Fully house nearly empty…for now

I have at times, like most parents, imagined my life with a different number of children:

What if Claude had been my only child?

What if I had stuck to my guns on zero population growth and birthed only Claude and Hugo?

What if Max and I had skipped having two more kids together? I’d be nearly done with the parenting of nonadults. Jules, who has one more year of high school, just turned 18.

Undeniably, my life would be different in any of these scenarios. But to imagine something is not the same as to wish for it.

Currently only one child, Lyra, is home with Max and me.

Jules and his girlfriend are in Northern Michigan. Leif, who will stay a few weeks with the grandparents, went with them. Jules comfortably drove everyone up there. I checked in on them throughout the long trip, but I knew they’d be fine.

It was different the first time a son of mine drove himself to Michigan. At the end of Claude’s first semester of college, he had a week between his second-to-last and last final exam. He took a Greyhound bus home and drove back to Ann Arbor for the test.

Before he left, I found some excuse to fill up the car for him at the BP in Fairlawn, right off I-77. Then, as he drove away, I whispered, “Please be safe, please be safe,” while my eyes welled up.

Some things do get easier.

After two years of saving and holding fundraisers, Hugo flew to Austria to study vocal performance in Graz for six weeks. Before he left, he came back from Rochester for wellness visits with doctors and the dentist.

While Hugo scheduled and got himself to his appointments, I was routinely involved. During a lunch meeting, I received four text messages and one call:

“So no fluoride, right?” Right.

“Do I need X-rays?” No.

“Just so I’m clear; I’m getting the fluoride and X-rays?” Hahaha.

“I need a filling for a chipped tooth, they’re checking on insurance.”

And that’s when he called, to get my OK for the $50 co-pay. Before I hung up, I told him how nice it was having him join my lunch meeting.

By the time I was Hugo’s age, I’d been on my own for years. Even then, I often wished I’d had someone to turn to as a young woman navigating adult decisions for the first time.

Hugo navigated the complexities of insurance coverage but understandably had questions. We soon commiserated over the amount of time it takes to get medical bills properly processed.

Apparently, Hugo and I are a lot alike. People regularly tell us as much. We’re both direct, extroverted and energetic. We have choleric temperaments, which is to say we are fiery.

Perhaps that is why he was the hardest kid for me to raise. His last two years of high school, I counted down the months until he moved out. The spring of his senior year he was so frustrating (not in my eyes alone), I had him move into a room at one of my rental homes.

Like me, Hugo values his independence. Moving him out early was reactionary on my part but, as it turns out, just what he needed. On his own, Hugo is more responsible and even tidier.

I drove Hugo back to Rochester so we could have time together before he left the country. Nobody makes me laugh like Hugo makes me laugh. We stopped at a Wendy’s in Erie for Cokes and when I asked for a biggie, nobody knew what I was talking about.

“These are our sizes,” said the cashier as she swept her hand under the row of cups.

“Okay, Mama, what’s with the baby talk?” asked a giggling Hugo. I looked it up on my phone and showed the two of them that Wendy’s did once, and for a long time, have a “biggie” size for a variety of items.

As soon as we were in the car, Hugo, a skilled raconteur, called Claude and retold the story, making it funnier and far more interesting than it was.

Still chuckling, we stepped into a T.J. Maxx to look for some things he needed for his trip. As we searched for backpacks, everything became hilarious and we found ourselves holding on to a fixture, belly laughing until tears rolled down our cheeks. When we finally stopped, we sighed loudly — several times.

Hugo, Claude and Jules Christensen all watch James Corden’s “Carpool Karaoke” with Paul McCartney. (Credit Max Thomas)

“You know,” said Hugo when we were back on I-90 East, “a lot of people have best friends they’ve known for years. I have good friends from when I was growing up, but my best friends really are Claude and Jules.”

Hugo will be a senior this fall, so it’s not like we aren’t used to him being away for months at a time. But there’s something different about him being so far away. Claude and Hugo especially sought to spend as much time together as they could before Hugo left. I had to tell Claude he could not call off work to hang out one last night with his brother.

It’s not always pretty. My boys will call each other out on transgressions in a hot second. But what a gift to have someone who will never walk away, who will always be in your life, point out when you are screwing up. Not to draw blood, but to push you to be your better self.

The armchair psychologist who lives in my head tells me I had five children because I was a lonely child. Funny thing, I love time alone. I enjoy a quiet house, including a week with only one child to feed. But that’s because the other four always return to fill it up. With a noisy mix of emotions all rooted in, yep, you guessed it, an abiding love.

This was first published in the Akron Beacon Journal on July 1, 2018

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Childhood abuse still echoes in adult survivors’ lives

In a room recognizably located in a nursing home, a tiny lady with white hair speaks in a bird-like voice to her young nurse, “I must hide under my bed.”

“Why?” asks the nurse.

“He’s coming!” says the old woman.

“Are we playing hide and seek?”

“No, my papa is coming, please don’t let him find me!”

The Spanish short film at the Cleveland Film Festival several years ago breaks from the scene with a message: Childhood abuse lasts indefinitely.

This column demanded to be written, no matter what else I had in mind. Why? Because in the two weeks since my last column, many women have shared their stories with me.

Some have been strangers sharing the impact, if not all the details, of their decades-long struggle with the abuse they suffered as children.

Others are women I’ve known since childhood, like one who told me about her teen rapist. I first met him, too, in elementary school.

Many women who wrote were sexually assaulted, but equally as many were physically abused. “I was told that my dad loved me as he bashed me around. It’s the loss of trust that is so damaging,” said one.

For any child abused, even if that child is now 30, 50, 70 years of age, I am deeply sorry other adults didn’t intervene. If I could strip away the lingering pain and replace it with enduring safety for the child-self left inside these adults, I would. Just as I wish I could give the same to my own child-self.

What I can do is love and protect my own children. For though child abuse may never be 100 percent eradicated, we can do better.

Celebrity shame

Since my last column, Woody Allen told the media in Argentina he should be the poster boy for the #MeToo movement. Why? Because he’s never had a complaint of assault from any of the hundreds of famous or just-starting-out actresses he’s worked with over the decades.

Great. He kept his sexual assault limited to the children in his family and never took it to work. Based on his logic, my dad, too, could be a poster boy for the #MeToo movement. (Unless my doctor writes me an unlimited prescription for Zofran, I need to avoid reading anything Allen says.)

Days later, Bill Clinton went on the interview circuit. He has a new fiction book, co-written with author James Patterson, about a president battling a cyberterrorist. As a result, the topic of Clinton’s affair 20 years ago with Monica Lewinsky has resurfaced. At the time, he was 49 and president of the United States. She was a 22-year-old college grad.

Clinton was defensive when asked about the affair on the Today show, claiming two-thirds of Americans sided with him at the time. He was comparative, wondering why he had to endure impeachment hearings when Kennedy and Johnson were never pressured to resign over their affairs. He touted his record of promoting women to high positions in government. And he attacked the reporter asking the questions.

Nothing he said conveyed an iota of contrition.

“Clinton’s smart and can afford the best PR firms, I’m sure,” I said as we discussed his tone-deaf answers over dinner. “Why didn’t his advisers better prepare him for these inevitable questions?”

“I’m sure they did,” said Max, “And he ignored them.”

When the Clinton impeachment hearings were going on, a friend of mine from a well-connected Democrat family wished Clinton would resign. I disagreed. I don’t now.

No party should parse between the personal behavior of a politician and the political gain of his policies. As Frank Bruni wrote in a recent column in the New York Times, nominating the first women to serve as secretary of state and attorney general does not compensate for eviscerating the life of a 22-year-old.

Lewinsky, who has admitted her own mistakes in allowing the affair, has become a modern-day Hester Prynne. Meanwhile, Clinton has gone about his life, amassing fortunes and building a library to commemorate his life and time in the Oval Office.

The thing about men like Allen and Clinton is no matter what outrage they face, they will never see the error of their ways. Perhaps they are all narcissists. But also, when predatory violence against women continues, sometimes for decades, with impunity, it underscores a predator’s notion that the rules don’t apply to him. Everyone who witnesses such abuse and does nothing is culpable.

Complexity of abuse

Today is Father’s Day. If you read my last column you might think I have nothing good to say about my father. But that is not true. The complexity of child abuse is that nobody is always evil, just as nobody is always perfect.

When I was an undergrad at OSU, I read a review of a British movie about an abusive family in the student paper. The college-age reviewer couldn’t understand how the father could beat the children in one scene and have a joyous Christmas celebration with them in the next. Clearly that writer had an upbringing devoid of violence.

Just as all parent-child relationships are layered, if not complicated, reconciling the history of parental abuse can be fraught with conflicting emotions. Making this even more difficult, abusers, and sometimes other survivors, often claim the abuse never happened.

In 2013, Emily Yoffe, formerly slate.com’s Dear Prudence writer, wrote a column on what adult children owe the parents who abused them as children. Her answer? Nothing, absolutely nothing.

“Holy moly, you are right! I’m a horrible excuse for a human being and what I did to you can never be excused. I am truly sorry for the endless suffering I have caused you. Tell me what I can do to help.” These are words I don’t expect Woody Allen and Bill Clinton (and Bill Cosby, Bill O’Reilly, Harvey Weinstein, etc., etc.) to say to their victims. Neither will most nonfamous parents who’ve abused their children.

“Make a list of all the persons you’ve harmed and become willing to make amends to them all.” That is step 8 in Alcoholics Anonymous’ 12-step program. It is also the step too hard for many to make. More people stop at this step, I am told, than any other.

For those with whom my last column resonated, do not give control to the people who harmed you by waiting for them to understand your pain and make amends. Seek whatever help you need, surround yourself with kind people — for most people are truly good — and be kind to yourself.

Be the adult you deserved in your life when you were a child and you will find what was taken from you. For me, parenting my kids as I wished I’d been parented has been the best thing I’ve ever done for myself.

The column was first published in the Akron Beacon Journal on June 17, 2018.

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No more: All sexual assault is intolerable

On February 1, 2014, Dylan Farrow published an open letter in the New York Times describing how Woody Allen, her adoptive father, had sexually abused her.

A week later on Facebook, I shared a Vanity Fair article that deconstructed, point-by-point, claims made by Allen’s defenders in response to Farrow’s letter. To my surprise, several friends of mine who’d never met argued heatedly over Farrow’s allegations.

At the time, Farrow was pilloried in the press and by people I know. Most believed, if anything, Farrow was a victim of her mother, Mia Farrow, and her longstanding anger at her former partner, Allen.

Reasons to question Woody Allen’s credibility were no more hidden than Poe’s ‘The Purloined Letter.’

When she was 20 and he was 55, Allen convinced his stepdaughter, Soon-Yi Previn, to pose nude in photos he took for his personal pleasure. That they later married and had two children does not make their initial interactions any less predatory on his part.

And Allen’s movies, particularly Manhattan, are crystal-clear windows into his attitudes about women. In his films, mature women are too demanding, too brittle. But young women don’t question older men and often see them as mentors, including in bed.

Ah, the everlasting myth, held and promulgated by men, that young women want to be sexually mentored by older men, no strings attached. (Excuse me while I take some Zofran.)

My story

When I was 16, my father arranged for his friend John (not his real name) to watch me bathe.

John lived two hours away and often visited for days at a time. Months earlier, he had listened in the next room when a boyfriend broke up with me because I hadn’t had sex with him. After the boy left, John, a trained counselor, comforted me.

As one of those adults who didn’t condescend to children, I trusted him.

On an August afternoon, I returned home from Michigan Beach, covered in tanning oil and sand. Sitting at the table next to the bathroom door, my father and John were stoned. They cheerfully blocked my way.

I remember their words, both flattering — there’s nothing more beautiful than a 16-year-old bathing — and shaming. Nothing could be more natural, they claimed when I resisted, than what they were suggesting, especially since John would be naked, too.

None of their words considered my humanity or agency.

For decades, I told myself it was nothing. I had a college friend who was raped by her father for years. Multiple friends have recounted awakening in the middle of the night to find their brothers freely groping them. I’ve known women who’ve passed out at parties and been raped. One woke up with her skin graffitied in permanent marker by her proud rapists.

When I was 19, a boyfriend told me he believed my father had sexually abused me. I vehemently denied it. He didn’t know about that summer afternoon and I found his accusations an unfair judgment of my father’s hippie lifestyle.

Later still, I studied feminist theory at OSU. In those classes, I learned about the male gaze, the objectification of women, the commodification of women’s bodies, the infantilizing of women as reflected in laws across the globe, including in the United States.

But knowledge of institutionalized misogyny did not undo what I had internalized: shame and guilt for that one day and an abiding distrust of most straight men. With the exception of a few close friends, I told no one.

In 2007, my grandma died and my eldest child turned 13. While the death of my father’s mother ripped the prosthetic closure off a festering wound (we were close and only then did I realize I never wanted her to know), I also considered my adolescent son.

What would I do if a friend of mine asked to watch him bathe?

After initial disbelief, I’d call the police. I’d call children’s services. I’d struggle not to commit crimes of violence.

I found a therapist and worked to unpack that day and all it has meant and done to me. And I wrote about it, but never anything I intended to publish. While lighter than before, those events were still mine to carry quietly.

Taking on Weinstein

The common thread of all sexual abuse is power imbalance. And the more powerful the abuser, the more freedom he has to continue abusing, even when it’s a wide-open secret.

Ronan Farrow knows this as well as anyone. He stood by his sister Dylan and claims Allen not only assaulted her and Soon-Yi, but several of his sisters. Ronan Farrow is a privileged white man, but it took more than his power as such to pursue the story on Harvey Weinstein. It took tenacity.

As a reporter at MSNBC and NBC, Farrow was told to drop his investigation of Weinstein. By then, several women had told Farrow of their encounters with the producer, reliving events he described as “their worst moments of a lifetime.” Farrow refused to stop and was released from his television jobs.

Fortunately, the New Yorker picked him up and his stories on Weinstein were printed. Those pieces, along with others published weeks earlier by Jodi Kantor and Meghan Twohey at the New York Times, electrified the #MeToo campaign. Women posted this small phrase on social media to open the world’s eyes to the pervasiveness of sexual assault.

The beauty of those two words smashed together with a hashtag is nobody who shares them has to go through what Dylan Farrow and so many other victims have (and still do): The shaming of the victim.

According to Rachel Denhollander, one of gymnast-doctor Larry Nassar’s victims, “pedophiles are reported at least seven times on average before adults take the reports of abuse seriously and act on them.”

Now, I pray, we have turned a corner.

Mia Farrow, left, becomes emotional as she listens to announcement for her son, Ronan Farrow, right, 2018 Pulitzer Prize winner for public service, during an awards luncheon ceremony at Columbia University, Wednesday May 30, 2018, in New York. (AP Photo/Bebeto Matthews)

In January, Dylan Farrow’s brother, Ronan, along with Kantor and Twohey, won a Pulitzer Prize for their investigative reporting on Harvey Weinstein and other powerful predators.

In April, after decades of drugging and raping women with impunity, Bill Cosby was convicted. Two weeks ago, Harvey Weinstein was arrested, his passport revoked and a GPS snapped on his ankle while he awaits trial for two counts of rape and one count of a criminal sexual act.

While I’ll never know, I don’t think my father was done pimping me out. I didn’t wait to find out. I moved back to my mother’s house in Ohio for my senior year.

For me and many others like me, the power of #MeToo is the recognition of all sexual abuse as harmful and intolerable. Abusers of all varieties — sexual, physical and emotional — rationalize gradations of abuse in order to keep the door open for further assault. This must stop.

Thank you Jodi Kantor, Meghan Twohey, Ronan Farrow and all the brave women who shared your stories with these reporters. May your truth-to-power efforts stop society’s willfully blind eye to sexual assault, thereby saving many would-be victims from the violence of predatory men.

And Dylan Farrow, I always believed you.

This column was first published in the Akron Beacon Journal on June 3, 2018.

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Simplicity & creativity need when potty training

“What about potty training?” I asked the doctor.

What I was really asking was, “But what does it mean to have a child with Down syndrome?”

Lyra was less than 36 hours old when we met with the geneticist to determine if, as it appeared, Lyra had Down syndrome.

In the years since Lyra’s birth, I have learned many in the national Down syndrome community view geneticists as “often not our friends.” Nothing could have been further from the truth with the geneticist we met at Akron Children’s Hospital.

“Yes, she has the adorable facial features common in Down syndrome,” were the doctor’s first words after she’d placed Lyra on the exam table.

When my first child, Claude, was born, I read babies require somewhere between 5,000 and 7,000 diaper changes before they are fully potty trained. With the 18-year spread of my five children, I’m a seasoned diaper changer.

For months after Claude’s birth, a diaper-service truck would come to our house once a week, pick up a bag of dirty diapers from our porch and leave a bag of clean ones. All cloth.

Later I bought my own diapers, washed them myself and hung them outside to dry. One of the most satisfying things I’ve observed is the sun bleaching of cloth diapers. No matter how many detergent commercials refer to “sun clean” or “sun fresh,” it means little until you experience the real thing.

Jules wearing the same rubber pants his mother wore in the 1960s.

I continued this with my second and third sons, though with Jules I gave up on fancy Velcro diaper wraps (they inevitably leaked) and went old-school, pinning his cloth diapers and popping him into a pair of rubber pants (now made of plastic, but still called rubber pants).

I didn’t use cloth 100 percent of the time. Day care providers require disposable diapers, and disposables are easier when traveling. But beyond being better for the environment, I had read that wearing cloth diapers aids potty training.

Like the ads say, babies always feel dry in modern single-use diapers. Newborns void without any recognition of the event. But if they feel the wetness, babies begin to connect the acts of voiding with the physical sensations that occur just prior. Eventually, they know they have to go and make it to the potty.

Sounds so easy.

Different methods

There are at least two methods of potty training. Some parents pick an age, commonly 2, and switch from diapers to underpants. My first day care provider, Edna Young, followed whatever type of potty training the parents of her charges chose, but she despised this first method.

“It’s just the adults who are trained to take the child to the bathroom,” she said. And also, “Parents who start too soon end up potty training much longer. Start when they are ready, and it happens very quickly, with little frustration for both the parents and the child.”

Edna taught me much.

My big boys potty-trained with few accidents by the time they were 3½. In preparation, potty seats appeared several months before needed.

When they were ready to try the potty seats, I had my boys pick out candy rewards. Gummy peach rings for number one and big chocolates for number two.

Each time we ran out, I replaced them with smaller candies until it was jelly beans and M&Ms. And then, I would only give them the reward when they asked for it. Eventually they’d stop asking.

This worked great with the first three children. Success was predictable, albeit with occasional accidents, and not an emotional ordeal that would scar the psyches of my boys. I believed I was a potty-training Supermom.

Then I had Leif. Whip-smart, I figured he’d be even easier to train than his brothers. Once again, I let a son pick out candy rewards not long after his third birthday. I stored them in glass jars on a shelf out of his reach in the bathroom — visual incentives.

Leif would ask for the candy, I’d remind him what he needed to do first and he’d give me the toddler equivalent of “meh.” Good hygiene need not accompany intelligence, or so I learned. Leif decided it was easier to let the rest of us change his diapers than be bothered toileting.

By his fourth birthday, we’d made little progress.

I complained to a much younger friend, who gave me this tip: Stop telling Leif he’ll get the candy rewards for using the potty. In fact, stop potty training altogether. Instead, whenever anyone else goes to the bathroom, make a big deal out of it.

Starting the next day, Max and my teen sons yelled out whenever they went to the bathroom and I showered candy upon them with excessive enthusiasm. In less than a week, Leif wanted in on the action.

Try, try again

That brings us to Lyra, my only baby who never wore cloth diapers. The first months of her life were spent visiting myriad health care professionals and preparing for eye surgeries at 6 and 7 weeks postpartum. We took every easy option available when so many important decisions were required of us.

When things settled down a few months later, we realized Lyra was regularly constipated. And while she’s not my first baby to suffer constipation, this was different.

People with Down syndrome, with few exceptions, have low muscle tone. Low muscle tone will delay when babies sit up, crawl, walk, run, hold a spoon or pencil. Low muscle tone in the mouth, and not poor cognitive functioning, is why many people with DS must work hard to speak crisply.

Human intestines, both small and large, have smooth muscles, and are also affected by low muscle tone.

Shortly before Lyra’s first birthday, we learned about Fruit-Eze. A jam-like blend of prunes, dates, raisins and prune juice, Fruit-Eze is a natural alternative to laxatives. Two tablespoons mixed into her breakfast each morning got Lyra going for about three years.

When she was 3, Lyra stayed dry every night for six months. But then she soaked her diaper every night for another six months. Too big for the Fruit-Eze to do its job without giving her more than she’d eat, Lyra was so constipated, her bowels were compressing her bladder.

A specialist told us to give Lyra Miralax, a product widely used by people with DS. At the same time, we learned it is not a true laxative, but works by pulling more fluid into the intestines. Determining the correct dosage took months.

Today, Lyra congratulates herself every time she uses the toilet. She also gives an enthusiastic, “Good job, Mama!” whenever she’s with me in the bathroom. (Do all young children follow their moms to the bathroom, or is it just mine?)

So, yes, potty training has taken longer with Lyra, but not for any of the reasons I might have imagined in the first days of her life.

Like so many things, people with Down syndrome just need more time to reach the same milestones as their typical peers.

The reward is well worth the wait.

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The End of an Era: 25 Years of Pregnancy and Breastfeeding

“How does that make you feel?” asked my physician. My eyes suddenly burned and I gulped before speaking, my voice hoarse with emotion.

“Wow, I wasn’t expecting that,” I said, wiping my eyes with the back of my hand.

After 25 years of pregnancy and breastfeeding, my youngest child has weaned.

I also cried when learning to nurse my first baby. Sobbed really. Sitting in a rocking chair, I begged my infant to latch on, tears on my face, breast milk everywhere except my baby’s mouth.

“Just 6 weeks, do this for just 6 weeks, and you can stop,” I repeated to myself.

Before breast milk, there is colostrum. A thick, serum-like liquid, colostrum is newborn super food. It is high in nutrients, antibodies, secretory immunoglobulins (protects mucous membranes), leukocytes (protects against bad bacteria and viruses) and a mild laxative to help eliminate the first stool (tar-like stuff called meconium). It also helps clear out excess bilirubin, which reduces the risk of jaundice, and it establishes beneficial bacteria in the digestive tract.

Whew! That’s a lot of heavy lifting. And because newborns have very small digestive systems, colostrum is super-duper concentrated. A little bit does the job. After two to three days, colostrum’s work is done and the milk arrives.

Whoa, Nelly! If a first-time nursing mother was getting a handle on breastfeeding during the colostrum days, she might still give up when her milk comes in.

Breasts often swell with the arrival of milk, making them taut and cartoonishly large (many a new dad has been told in no uncertain terms to put that camera away). This can make it harder for newborns to nurse, which is exactly what ta-tahs need to get back to a manageable size.

First-time nursing mothers and their babies are both rookies. Sure, babies come with instincts, but many struggle to figure it out. My second through fifth newborns all nursed like champs within an hour of birth. That’s because after nursing my first baby for over two years, I had the hang of it.

Zealots Not Wanted 

Yes, breastfeeding is very healthy for babies. It also helps a mother’s uterus return to its regular size and reduce postpartum bleeding. Long-term, due to a reduction in estrogen production while lactating, breastfeeding reduces a woman’s risk of breast and ovarian cancer.

But not everyone can or wants to breastfeed.

I read an article by a woman who regularly endured quips and comments from strangers, usually other women, about how breastfeeding would be better for her baby than formula. Besides the fact that it was nobody’s business what this woman fed her baby, breastfeeding was never an option for her. Her breasts had been removed years earlier to save her from the cancer they contained.

Other women find it difficult to return to work and pump their milk. I get it. I leaked like crazy the first year of my babies’ lives and can think of many jobs in which I might have chosen formula over the struggle to keep my shirts dry.

And some women just don’t want to breastfeed. That does not make them bad people or mothers. We live in a time and place where healthy alternatives abound.

On the flip side, women who breastfeed their babies in public may also feel harassed by strangers.

An editorial cartoon I once saw sums up the folly of this harassment: mall cops badgering nursing mothers who are seated in front of a lingerie store window featuring a 10-foot-square photo of a bra filled with a buxom bosom.

Currently, laws allow women to publicly breastfeed in 47 states, D.C. and the Virgin Islands. In South Dakota and Virginia, nursing mothers are exempt from public indecency or nudity laws (in effect little different than the other 47 states). Only Idaho has nothing on the books regarding public breastfeeding.

If a woman nursing her baby in public makes you uncomfortable, just move along.

Six weeks later

My midwives convinced me if I nursed my first baby for six weeks, it would benefit his health lifelong. But also after six weeks, nursing becomes much easier. Swelling is usually gone, nipple pain or sensitivity fades as breasts become accustomed to their new role.

And after six weeks, mom and babe are no longer rookies.

But the primary reason why I breastfed my children long term is whenever there is an easier way to do something, I’ll sign up. Breast milk is always ready, the right temperature, and the perfect formulation for your child. Yep, I breastfed because I’m a little lazy.

How long is normal?

The American Academy of Pediatrics (AAP) and the World Health Organization (WHO) both recommend exclusively breastfeeding babies until they are 6 months old. The AAP recommends continued breastfeeding along with appropriate foods until age 1 year or longer. The WHO recommends breastfeeding up to 2 years or longer.

But when does long-term breastfeeding become Last Emperor weird?

Katherine Dettwyler, a University of Delaware anthropologist has researched breastfeeding habits across cultures. According to Dettwyler, large-bodied mammals nurse until the first permanent teeth erupt, or 5.5 to 6 years of age for humans. Most European languages call the first set of teeth “milk teeth.”

I weaned Claude, Hugo and Leif when they were 2 years old because I was pregnant with the next baby. Pregnancy leaves me bone-weary and I needed to maintain as much of my bodily resources as possible.

Jules, who was 8 when I became pregnant with my next child, gradually weaned somewhere between the ages of 3 and 4.

Difference with Lyra

I nursed Lyra as soon as the midwife handed her to me. Red and screaming, Lyra’s eyes were scrunched shut until she began to suckle. When she finally looked at me, I thought her eyes looked “Downsy.” Three days later, her diagnosis of Down syndrome (DS) was confirmed.

Overwhelming evidence indicates that breast milk improves brain health in infants. Knowing DS impacts cognitive functioning, it was important to me to feed Lyra’s brain best by nursing her for as long as possible.

There is also growing evidence that long-term breastfeeding decreases the risk of childhood leukemia. While rare in the typical population, children with Down syndrome have a heightened risk of developing both types of childhood leukemia, particularly acute lymphoblastic leukemia (ALL). This risk is greatest during the first four years of life. (Interestingly, kids with DS also have higher survival and lower relapse rates than typical children.)

Lyra nursed multiple times a day until she was between 3 and 4. Whenever I was away from Lyra for more than 24 hours, I pumped to keep my milk established. Then, for about a year, she nursed first thing in the morning and last thing before bed.

For the past year, Lyra’s morning routine has been to get up, go to the bathroom, then run to my side of the bed, crawl in and nurse. As she has since she was an infant, she wraps her thumb and fingers around one of my thumbs and I close my hand over hers.

This February, when Lyra was exactly 5 1/2, she abruptly weaned. The end of nursing means my hair becomes blonder (hormones do strange things) and I lose a few pounds, things I quite like.

But gone, too, are the sweet morning snuggles with my girl.

This was first published in the Akron Beacon Journal on Sunday, May 6, 2018.

 

 

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Urban community comes together for schools and kids

While local communities must contribute, the OSFC has provided over $9 billion to the rebuilding of schools across the state in the past 20 years.

When Hugo was a first-grader at Case Elementary School, I attended meetings on the construction of the new building. We knew Case would be one of the last Akron schools to get rebuilt, which I figured would happen during Hugo’s fifth-grade year.

The doors of the new Case Elementary will open to students this fall. Hugo will be a senior at the University of Rochester.

You may have noticed I said “Case Elementary” and not “Case Community Learning Center.” Technically, I’m wrong, but can we talk?

The first time I saw an Akron school named a “community learning center” was when Portage Path Elementary reopened in the fall of 2010. It confused me. Did that mean anyone in the community could just walk in and use the resources of the school, you know, like a public library? Wouldn’t that be unsafe?

Of course, it would. But someone decided where two words, “elementary school” or “high school,” are clear to most Americans, three ambiguous words are better. I disagree.

Akron has a great sense of community. It’s the primary reason my family is committed to living here. And institutions can help foster community, but not simply by applying a label.

So I hope you, and my editors, will forgive me for calling a school a school.

My big boys went to myriad schools, both private and public, for kindergarten through eighth grade. But they have all attended Firestone High School. For many reasons, I feel Firestone is the ideal of what a public high school can be. Beyond standard academics, it has a school for the visual and performing arts, an international baccalaureate program and an engineering program.

Most importantly, it’s integrated. Diversity is as essential as English and algebra to a high school education because it gives daily, concrete form to the notion that all people are equally human. Just telling students in a homogenous district does not have the same impact.

My first three boys are athletes. Arguably, Hugo is the best but he did not participate in high school athletics because it conflicted with his musical pursuits. Claude (class of 2012) and Jules (class of ’19) are cross country runners and each has won the Akron city championship.

But winning beyond local championships is not common for most urban schools. Oh, it is done from time to time. In 2012, Firestone’s Sarah Meeks qualified for the state championship race in cross country and in 2015, Harley Moyer, also from Firestone, qualified for the 3,200 race at the state track championships.

But, by and large, the teams who win at district, regional and state competitions, year after year, are the wealthier suburban districts. The undeniable fact is they have more resources, including better facilities and more coaches.

Community steps up

The funding of new schools has been a tremendous benefit to Akron Public Schools. While OSFC does not cover all the costs associated with rebuilding schools, the cost is greatly reduced, which made rebuilding feasible.

What OSFC funding does not do is allow for improvements such as larger gymnasiums or football stadiums. Those can be incorporated into the master plan, but must be funded by local communities. As OSFC points out in its fact sheet, “lower wealth districts are less able to pursue such initiatives than are wealthier districts because of their smaller local tax base.”

This is where community comes in.

Last month, Claude and I attended a meeting with Firestone’s coaches and boosters representing sports from bowling to soccer to discuss improvements to the athletic facilities. The school’s athletic director proposed the installation of a new weight room and teaching the coaches up-to-date weight-training methods.

In the past, the weight room hasn’t always felt like it was available to all athletes. Certain teams, namely football and basketball, seemed to have priority. The new weight room, should it get funded, will have the capacity to train all of the school’s athletes.

On Aug. 4, Firestone’s first golf outing fundraiser for athletic programs will be held at Mayfair Country Club in Green. The primary beneficiary will be the weight room. The PTSA at Firestone also will match donations made by May 31, up to $10,000.

Back at Case …

Several years ago, Craig Sampsell, an intervention specialist at Case Elementary, saw a flyer for a 5K fundraiser for a private preschool. “Why don’t we do that?” he thought, and the Race for Case, a certified 5K, was born.

Its first two years, 2012 and 2013, the Race for Case raised money for technology, including SMART Boards, iPads, and desktop and laptop computers.

The next two years, the proceeds were used to upgrade the playground at the new Case. Fully funded by grants and the race proceeds, the new playground surpasses the minimum standards for ADA compliance and is far more deluxe than what OSFC funds alone would have purchased. This is a boon not only for Case students, but also for children in the community who can play there after school.

Last year, proceeds went toward building a greenhouse at the new Case Elementary.

This year, wanting to help other schools in the Firestone cluster, Sampsell reached out to Firestone boosters who want to upgrade the track and field to include a rubberized track and the installation of stadium lights. This will allow Firestone to hold track meets and the soccer team to host games at night.

“Most of our kids will eventually attend Litchfield [Middle School] and Firestone, so it makes sense to have our now-established race help with this project.”

Registration for the 2018 Race for Case allows participants to choose which project they wish the proceeds of their registration to benefit — either the greenhouse at Case or the track and field at Firestone.

Sampsell says the May 19 race is open to everyone and walking the course is an option. The 1-mile fun run will be at 8 a.m. and the 5K starts at 8:30. Register by the first week of May and you’re guaranteed a shirt, but walk-up registrations will also be available on the day of the race.

Most of the boosters working on these projects will no longer have children in the school district once the projects are completed, but their commitment to the community, the kids and the schools remains.

Boy, do I love Akronites.

Sign up here for the Race for Case.

For information on first Falcon Athletics golf outing, go to the Facebook page “Falcon Athletics Golf Outing” or contact Brian Fuller at bmf5454@gmail.com.

This column first appeared in the Akron Beacon Journal on Sunday, April 22, 2018.

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Getting Kids to Eat a Healthy Diet–Relax!

Mothers trying to get their kids to eat is such a universal stereotype, I’m pretty sure it’s hardwired in all women’s brains.

Long before humans farmed, we were hunter-gatherers. So, too, were our direct ancestors, Homo erectus, for nearly 2 million years. I’m also pretty sure for all those eons of food insecurity, women pushed their kids to eat as much as possible whenever food was available.

In 1939, Dr. Clara Davis, a Canadian pediatrician, presented the results of her longitudinal study on self-selection diets of young children. Entering the study as recently weaned infants, they were given 33 healthy foods to choose to eat at each meal for several years.

While the children chose different foods from one another (and different from the recommended diet at the time), they all ate similar proportions of proteins, carbohydrate and fats. Overweight kids slimmed down, underweight kids gained weight. One child with severe rickets chose to drink cod liver oil.

The takeaway? Present your children with healthy food options and they will eat a balanced diet. Maybe not each day, but over time.

Small children

For infants who are weaning off breast milk or formula, all food is new. With my first baby, I introduced rice cereal when he was 6 months old. He refused to eat it, or anything else, and exclusively breastfed until he was a year old.

He then became an adventurous young eater. My friends from South Asia marveled at toddler Claude eating spicy curries their own children wouldn’t try. (Indian cooking remains a favorite of Claude’s and for many years we took him to the Saffron Patch for his birthday.)

Some small children strike on a food they enjoy and then want it all the time. For months, toddler Jules wanted chicken. Always thin, I used to call Jules my “air fern” because he ate so little. If he wanted chicken, I made him chicken. Then he switched to eggs and for months, that was his primary protein.

Kids eat free at Macaroni Grill on Mondays and Tuesdays

Vegetables are a hard sell with most children. You can sneak it in them pureed when they are toddlers, but they won’t eat baby food forever. Again, find what vegetable they do like and go deep. Lyra loves broccoli right now. We give it to her nearly every day.

School-age children

Every kid I’ve ever met loves carbohydrates. Here are some tricks to get them to eat something that isn’t white and processed:

Give them false choices. For example: “You can have green beans or broccoli with your hamburger.” And then tell them no dessert until the vegetables are finished. If they leave anything on the plate, I prefer the protein over the vegetable.

Give them vegetables first. Hugo was my pickiest eater. I’d often make him eat five baby carrots or peanut-butter filled celery before I’d give him the rest of his lunch.

Hide the vegetables. My kids think spaghetti sauce is thick and stew-like. Ours always includes sautéed onions and garlic, grated zucchini and whatever other vegetables I can dice small enough so they won’t know it’s in there. Even the universally kid-abhorred mushrooms can slip by undetected if small enough.

Buy healthy carbohydrate alternatives. We get Ronzini SuperGreens pasta at Acme. It tastes fine, but has a lower glycemic index and more fiber that white pasta. Whole wheat pasta is also a healthier option, but I don’t like how gummy it is.

Always have fruit available. Our kitchen counter has a bowl of washed apples (Jules easily eats 10 pounds of apples a week) and a second bowl of other fruit. Clementines are great because little hands can peel them on their own.

My kids never have to ask to eat fruit, though I wish they’d always finish it. Sometimes in the bowl I find an apple with a trail made by a small mouth. She came, she nibbled, she returned the apple to its kin.

Teenagers

So far, all the teens I’ve raised have been boys. When Claude and Hugo were very little, a woman who taught me many parenting skills warned: When they are teenagers, you will not believe that a gallon of milk will be gone in one afternoon.

Around age 13, most boys experience a big growth spurt. Twice, once with Claude and once with Jules, they came down for breakfast taller than when they went to bed the night before. Their bones may ache, they often need more sleep. And, wow, do they eat.

When Claude was in high school, we called him the “Gaping Maw.” I double or triple most recipes not only to have enough for one meal, but also for leftovers. When Claude was growing, there were never any leftovers.

One benefit of teenage boys is we rarely throw away food. It all gets eaten.

Though 17, Jules is still growing. My onetime air fern, who had such light bones I carried him on my hip until he was 6, is now 6 foot 5. He’s a really good kid, but I can’t trust him with food I don’t want him to eat. Even if I tell him not to eat it and even if he promises he won’t, he still will. And there went the box of Malley’s Bordeaux Max gave me for Valentine’s.

When he was in the eighth grade, picky Hugo stopped eating carbohydrates. His portions became smaller and he rarely finished what was on his plate. I became worried that he was developing an eating disorder, but he vehemently denied it.

I took him to our pediatrician and also met with an eating disorder specialist. Hugo pulled through and later admitted he had been fasting in an unhealthy way, but didn’t believe he had an eating disorder.

Estimates are that only 5 to 15 percent of people in the U.S. with eating disorders are male. Because it is so uncommon in boys and men, it can be harder to detect because it might not occur to a parent that their son has an eating disorder.

If you have any inkling a child has an eating disorder, contact a health care professional immediately.

Today, Claude and Hugo mostly cook for themselves and regularly call me for recipes of various dishes they ate growing up. When he was in middle school, Jules became a fabulous cook and baker. He made his first salmon almandine at age 12. He’s too busy now to cook elaborate meals.

I miss those days and hope they eventually return.

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Sometimes the best decisions are the toughest

“She has an incredibly strong hunting instinct and you can’t change that,” my vet said. “One day, her instinct will override her training and it’ll happen so fast, there’ll be nothing you can do.”

I had asked the vet about Dorothy, our 1-year-old, 70-pound German shepherd and her obsession with our cats. Having tried everything, the vet made it clear there was only one decision, albeit hard, to make.

Last June, a month after we brought puppy Dorothy home, four tiny kittens marched out from under the porch of the house where Claude lives.

I drove over with Jules and Leif. Sure enough, when we pulled in the driveway, there they were: three white kittens and an orange one frolicking in the front yard. As soon as they saw us, they darted back under the porch.

The underside of the porch is open but covered with lattice. I slid the lattice to one side and sent Leif, who was 7 at the time, into the dusty space. One by one, he delivered the kittens to us.

What to do with four feral kittens? The best we can, because feral kittens become feral cats, which have more kittens. One of a Kind Pets was so full it was not accepting even young kittens. Nothing to do but take them home.

With eyes still blue, they were between 3 and 4 weeks old. A good age to tame feral kittens. At home in our back garage, we placed them in a sofa box we’d been saving because how much fun is a box big enough to hold a sofa?

Since they were too young for chemical flea treatment, I washed each kitten with dandruff shampoo, which stuns the fleas. While they were in their torpor, I pinched dozens of fleas off each kitten with a pair of tweezers.

Two weeks later, we trapped two more kittens at Claude’s house (I’m his landlady). Again, all-white kittens, but one significantly larger than its buddy, who was slightly smaller than the first four.

Turns out we had two white mama cats in the neighborhood. We eventually caught and spayed both, thanks to One of a Kind Pets, which has a very affordable trap-neuter-and-release program for feral cats.

Suddenly our household included seven people, three dogs, a 16-year-old cat and six kittens.

We quickly found a home for the largest of the six kittens. Claude said he wanted one, but I told him he must take two as I strongly believe, when possible, that pets should live with at least one other member of their species.

When they were old enough for flea treatment, the kittens moved into our basement laundry room. For weeks, I started my days by pouring a cup of coffee and heading down to the basement. When I’d open the door, the little kitten we took in last would stop playing and go hide. I named him Pipsqueak because he was so tiny and his meow sound like the noise from a squeeze toy.

Kittens play in the laundry room.

Sitting on the floor with my back against our upright freezer, I’d watch the kittens chase each other, tumble and roll. Like Jane Goodall with her chimpanzees, I mostly observed my wild subjects. Soon, Pipsqueak would cautiously rejoin the kitten rampage.

Playtime ended with the kitties making their way to my lap. There they licked one another and fell asleep as I stroked them.

When I went back upstairs to start my workday, I often was shocked to discover I’d spent 45 minutes or more sitting on my laundry room floor. It was perfect meditation — I stayed completely in the moment when watching them.

In September, the kitties turned 3 months old. Claude took his two back to his home and we let the remaining three roam free in the house. Dorothy immediately began stalking them. We figured she needed some time to get used to these new creatures.

But time only deepened Dorothy’s obsession. She was not allowed on the second floor or the basement. None of my dogs are allowed in the basement, which is where the cat boxes are kept, because cat boxes are to dogs what open bars are to college students.

Day after day, Dorothy paced back and forth between the bottom of the staircase leading to the second floor and the top of the staircase leading to the basement, waiting for a cat to try to pass.

Dorothy and Pipsqueak

So long as they could stay up on furniture, the cats came into the same rooms as Dorothy. When one settled on a dining room chair, Dorothy often sat next to it, her face level with the cat’s, aching for it to make a move. Several times she air-snapped at them.

When she went outdoors, Dorothy could not wait to get back inside. She began jumping on the back door regularly and only moments after being let out.

She begged to be let in even when all of us, the people, were outside in the yard. To her, the cats were prey and as a predator, she could not “leave it” as we all told her repeatedly.

She forgot about the cats only when we walked in the parks. Watching Dorothy, solid and lean, gallop at peak speed across a field is a glorious sight. She’d then come slide her big head between my body and hand so I could rub her ears while telling her what a good girl she is.

After a family discussion in which we had to choose which animals to keep, I called the people we bought Dorothy from and told them what our vet had said. They quickly offered to take Dorothy back, but asked if I wanted the rag doll kitten they’d adopted last summer. Their dogs were on constant alert around the cat. “I’d never forgive myself if I came home one day and found the cat’s neck broken,” said the mother of the family.

I was relieved they understood exactly what we had been struggling with. I thanked her but said with four cats, we were maxed out.

Good parents, like good pet owners, take into consideration what is best for each member of the family and the family as a whole. With divorce, relocating for jobs, choosing where and with whom to live, taking ego out of the equation isn’t always easy, but it is necessary. What is best for the children? Where will they thrive?

It may not be with you, and there is no shame in that.

I cried as I drove Dorothy to the breeder’s house. And I’ve cried since when I view photos of her playing happily with other German shepherds and bonding with one of the sons in her old, now new, family.

As much as Dorothy loved us, she is much happier in an environment where she’s not constantly struggling against her instincts.

This was first published in the Akron Beacon Journal on March 18, 2018

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Screen time: less is always more

In the 1980s, a bumper sticker that read “Kill Your Television” was common, especially around college campuses. A rather radical notion at the time, today, when most people have smartphones in their pockets, it seems charmingly quaint.

For many years, my school bus let me off at my house at 3:30. Minutes later, my mother would leave for work. I made my dinner and ate it alone in the kitchen while watching syndicated shows on our 12-inch black-and-white TV. I believe I’ve seen every Hogan’s HeroesThe Odd Couple and Adam-12 ever made. Multiple times.

When the news came on, I did my homework and got ready for bed so that at 8 p.m., network television’s prime time, I was ready. Many nights I watched until 11.

Lonely. If I had only one word to describe my soap-operatic childhood, I would choose lonely.

At 15, I ran away to my father and stepmother in Northern Michigan. During the 10 years I hadn’t seen them, I romanticized what life would be like with this other set of parents. I was soon disabused of those dreams. That is, except for family nights.

Those nights, my dad made popcorn on the stove top. He shook the dedicated pot until it overflowed as he poured batch after batch into large bowls.

We played rounds of backgammon or cards. My sisters and I often painted one another’s toenails. In the background was always the sound of … music. Proper hippies that they were, my parents did not own a television.

On those nights, I felt I belonged.

I remembered this when I had children of my own.

When my big boys were little, we had a tank-like monitor that got no television reception. We used it to watch videos or DVDs. Claude and Hugo had cartoon movies they watched repeatedly, but also had long runs with musicals such as The Sound of Music and Seven Brides for Seven Brothers.

(Tip: If anyone is interested in dating one of my boys, you have to pass the movie test. Tell that son of mine you love Seven Brides for Seven Brothers or you won’t make the cut. Their rule, not mine.)

By the late ’90s, Nintendo Game Boys were popular. I saw young children, including those of my friends, silenced at length by the little screens. I never wanted that to be my kids.

When Claude went to kindergarten, I made an ironclad rule that we would never own a gaming system or Game Boys. It was probably the best single decision I ever made as a parent.

This year, the World Health Organization added “gaming disorder” to its list of diseases. Rightfully so.

When I was in high school, my friends and I often hung out in video arcades on the weekends. We’d play Pac-Man and Space Invaders, flirt with boys. It was fun, but then we went home and did other things.

I talked with Claude a few months back when writing a column about the heroin epidemic. I asked him if not having video games was part of the reason he never used drugs. It’s been well documented that gaming companies use psychological strategies to make games addicting.

Claude agreed but then said, “You know, I think it’s as much that people who game all the time don’t make many real social connections.”

I’ve known many kids who played a ridiculous amount of video games and turned out just fine. But what do many children lose when they are drawn, as I was, to screens over all else?

“Holly is very bright, but they don’t give her much intellectual stimulation so she doesn’t stretch her mind.” My grandmother wrote this to my father in August 1979.

She was right.

Kids who do not have screens available find things to do. Eight-year-old Leif plays with his Legos; 5-year-old Lyra listens to her music while looking at her books. Leif plots out elaborate stories for his dinosaur figures; Lyra undresses her dolls and puts them to bed. Both children go outside and play in the yard.

They also listen to stories.

For 20 years, I’ve regularly checked out children’s audiobooks from the library. I think today’s increase in reading comprehension issues is possibly connected to children seldom getting the chance to imagine a story told to them.

Claude, who was diagnosed early on with severe dyslexia, became a voracious reader. In 2016, he graduated cum laude from the University of Michigan with a degree in literature.

Hugo, who quickly learned to read, was not a bookworm. Instead, he played the guitar, the piano and sang. His dedication to music earned him entry and scholarships at one of the best music schools in the country.

The summer he was 17, Hugo spent time with one of my most absurdly talented friends. She took him to a wedding of musicians in rural North Carolina. It was a three-day bluegrass jam fest. Hugo joined in on his guitar while my friend played her banjo. It remains one of Hugo’s favorite memories.

“How can I get my son to play guitar?” my friend asked Hugo. “He says he wants to but all he does is play video games.”

“Get rid of the video games,” Hugo said.

It’s not easy, once that Pandora’s box is opened, to remove games. Max recently learned this firsthand when he let Leif play Lego Creator Islands on our iPad. Sounds reasonable enough, right? In short order, it’s all he wanted to do. Max quickly put strict limits on Leif’s time with the Lego video game.

I make my living on the computer. I studied French film in college. I expect my kids will play video games at their friends’ homes. But as parents, we have the power to save our children from themselves. To teach them balance.

For two decades, my rule has been no screen time on school nights (with the Winter Olympics and the U.S. presidential debates as exceptions to this rule). Our only television is in the basement and the adult in charge must approve any viewing, which is limited.

Kill all your screens? No. But for everyone, especially kids, less screen time is always more.

This was first published in the Akron Beacon Journal on March 4, 2018

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Treat friendships as though your life depends upon them–for it does

Until this month, the last time my friend Jen Marvelous and I had a long, uninterrupted visit was Jan. 5, 1994.

I met Jen in a plant pathology class at OSU’s College of Agriculture. She and I alone seemed to notice that the professor’s solution to all plant problems was to hit them with chemicals. At our request, he let us co-teach a class on sustainable agriculture.

Jen moved to Kansas to work at the Land Institute after graduation, but always stopped by when she was back in Ohio. After lunch that winter’s day in ’94, we sat down in my living room with mugs of tea. I suddenly felt a hot wetness spread across my legs — my water had broken.

Our lunch visit lasted more than 24 hours as Jen stayed and helped with the home birth of my first child, Claude.

The second and third time I gave birth, again Jen was there. And when she had her second baby in 2003, I went to her house in Philadelphia to help care for her oldest daughter. Sasha and my third son, Jules, were both 3, so I took him along, too.

For decades, Jen and I have regularly gotten together whenever she visits her parents in Painesville. With kids in tow, we’ve been to parks and museums together across Northeast Ohio.

For several years, we’ve tried getting away together without our kids, but with nine of them between us, it’s hard. Now, however, our kids are older and more self-reliant. So when Jen recently accepted a new position at the University of Pennsylvania, she purposely gave herself two weeks between jobs.

Kayaking through mangrove forests in Florida’s Ten Thousand Islands

We each bought cheap flights to Florida, rented an economy car and toured the lower half of the peninsula together. We stayed with friends and at Airbnbs. We talked leisurely and at length for seven glorious days.

It was one of the best things I’ve done for myself in a long time.

Social beings

Lately, reports about the importance of a variety of relationships are in the news. Evidence indicates that being lonely can have the same negative effect on health as smoking and obesity.

Furthermore, couples that have been together for a long time find they feel more romantic with one another after spending time socializing with another couple than after a clichéd candlelight dinner for two. Socializing is the “spice of happiness,” according to social psychologists.

I’ve only recently focused on the importance of friendships for adults. But I have long thought about it for my kids.

In the 1970s, when I was a girl, nobody worried about finding friends for their kids. The streets were choked with children tossed outside until the streetlights came on. Stay-at-home moms were still common. If you wiped out on your banana-seat bicycle as I often did, in all likelihood a mom would come outside to wipe away your tears and blood.

Today, parents are often their kids’ social secretaries — regularly organizing supervised play dates. Yeah, that’s not me, but my first three boys, who are each three years apart, had built-in playmates. Still, they didn’t roam the neighborhood with other kids like I did.

Currently, there are no children in any of the homes near ours. Leif has Lyra, and they play together, but it’s not the same as it was for the older boys. We’ve had over several of Leif’s classmates, but it’s not regular time outside of school with friends. We’ve decided to sign him up for Boy Scouts and hope it will be just the ticket.

Alone in technology

Changes in child rearing are compounded by technology, another major culprit in loneliness. Children don’t learn appropriate social interaction when they communicate using devices rather than in person.

Technology exacerbating loneliness is not limited to kids. It makes people of all ages seem connected when, in fact, they are not.

Exhibit A: Me. I make most of my money sitting alone in front of a computer. I check my email and Facebook while I work. But clicking “like” for someone’s picture of their dog/kid/dinner is not the same as socializing.

Five years ago, I picked up a part-time job in a store. My time there is an energizing social outlet, where I interact and have relationships with my co-workers and the customers.

Some friends are lost when the commonality is gone — co-workers at a previous job, people whose kids went to school with yours, neighbors who move. Other people are just not value added. With more days behind me than ahead, I find it better to wish those folks well and move on.

I treasure all my close friends, yet there is something deeply rewarding about those friendships cultivated before parenthood, marriage or even adulthood. Friends who have seen each other develop and age yet who also recognize how much of who we are now was always there.

A poignancy of middle age is realizing “one day” may easily never arrive. In 1990, I studied for several months in France. I loved the country and the French people (they are chronic interrupters, just like me) and considered staying. But I was only two terms away from receiving my bachelor’s degree.

I returned to the U.S. promising myself I’d move to France soon after graduation. I have yet to step on French soil in the nearly 28 intervening years.

My friend Sam and I regularly promised to meet each other in Columbus. Like the lead vest dentists place on your chest before taking X-rays, I have been cloaked in a weighted pall since Sam was killed last month.

I can give you many reasons why we never had our date in Columbus, but because our one day will now never arrive for Sam and me, those reasons are as irrelevant to me as how many drops of rain fell today.

With the people you cherish, those who invigorate your days on this planet, do not count on one day getting together with them. Move around what are really just errata on your calendar, pick up the phone and make plans with those friends right now.

I am so glad Jen and I did.

This was first published in the Akron Beacon Journal on Sunday, February 25, 2018

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For Valentine’s Day, Send Love

Rather than chocolates and dinner at a crowded restaurant, would you like to fill your heart on Valentine’s Day?

Then check out the Valentine Project.

Co-founder Andrea Margida is no stranger to cancer. When she was 16, it took her mother. Later, her brother was diagnosed and, with treatment, survived.

But when Andrea was a young mother, she and her husband, Anthony, found themselves among a community that nobody wants to join — families whose children are diagnosed with cancer.

When she was 5, their daughter Michaela had brain surgery to remove a tumor at the top of her spinal cord. Luckily, the biopsy results were benign. Even though she didn’t have cancer, Michaela’s post-operative therapies were conducted in a pediatric cancer unit. And because of the concern for a recurrence, it is also where she went for annual brain scans and whenever she had a severe headache.

Today Michaela is a healthy young woman working on a Ph.D. in environmental science.

Remembering what it was like for their family before and after Michaela’s surgery, Andrea and Michaela volunteered in 2007 at Camp Quality, a summer camp for Ohio children with cancer and their siblings.

Their jobs were to buddy with one camper each and make it the best week possible. Michaela was 18 at the time and partnered with one of the siblings. Andrea was assigned to the sister of Michaela’s buddy, a 13-year-old girl with soft-tissue cancer. Andrea was told it would be the girl’s last summer.

Miraculously, she lived another eight years, years filled with difficult treatments, including a double mastectomy. She also returned to camp several times, allowing only Andrea to be her buddy. At 21, the young woman died with Andrea and Michaela by her side.

The third year that Andrea and Michaela volunteered at the camp, Andrea’s son Gregory joined them. It was he who had the idea to start the Valentine Project.

“What if we anonymously send each camper, both the kids with cancer and their siblings, a box of fun things for Valentine’s Day?” he asked and his family immediately got on board.

Gregory listed the 88 campers by first name, gender and age. Michaela used Facebook to invite students in her small, all-women college to choose a child and create a gift package. All 88 children were picked minutes after she published her post.

That was in 2010. The Valentine Project quickly grew after that first year. Families tell other families about it, as do staffers at children’s hospitals. Two years ago, the project expanded to include children with chronic illnesses and their siblings.

This year, Gregory, who is now 24, is piloting the project in California where he now lives.

What is it that makes the Valentine Project so special to the community of families with children who have cancer or chronic illness?

I spoke with Sara Taggart, whose third child, Annie, has osteogenesis imperfecta, or brittle bone disease. “There are so many things for kids with illness, but nothing for siblings. They have to take a back seat while the focus is on the sick child.”

For the Taggarts, Valentine’s Day is now like Christmas. Nobody knows what is in the packages. “People don’t skimp, and rather than pity, it feels like an outpouring of love from strangers.”

Entirely anonymous, children are listed by first name, age and gender. Donors do not know if the child they choose has an illness or is a sibling. Taggart told me this was really important because the gifts her kids receive are not chosen with Annie’s illness in mind.

“Can you imagine if people knew she had brittle bones?” Taggart asked. “They’d only send stuffed animals.”

Like many other recipient families, the Taggarts feel so touched by the Valentine Project they now sponsor a child each year. “The kids and I are thrilled when we shop for the child we’ve chosen to sponsor. It’s a great way to teach my kids the joy of giving.”

So how does the Valentine Project work? I admit I couldn’t fully comprehend it until I made a trip to Andrea and Anthony’s home in Alliance, widely known as the Valentine House.

Eligible families register on the Valentine Project’s website. It is also where people can choose a child to sponsor or to donate money.

Cash donations help pay for shipping. This year 889 boxes will be sent out in Ohio and 116 in California, totaling $20,040 for shipping.

Meanwhile, back at the Valentine House, the ground floor has been taken over by the project. Just inside the kitchen door, I found a mountain of donation boxes sent from all over the country.

As action breeds understanding, I put together a package.

Each child has a number, which the donors write on the shipping box. On Andrea’s kitchen counter, gift tags are organized by number with the child’s name, gender and age.

I picked and opened a box and pulled the corresponding gift tag. My package was for an 8-year-old boy. I inspected the contents of the box. Anything referring to illness, such as cards with the words “Stay strong” or “Keep fighting,” are removed. These packages are meant to be a reprieve from the immersion of acute or chronic illness.

Along with whatever the donor chooses to send, each package must contain a stuffed animal, something to do (craft, board game, art supplies), and candy. If any of these items are missing, the Margida living room has a “shop” of toys to make each package complete. Mine needed a stuffed animal.

Valentine packages ready for shipping boxes.

Finally, I chose a handmade pillowcase patterned with bright lizards on dark green leaves. I filled the pillowcase with the gifts and tied it with the gift tag. Once assembled, my package went in the dining room. There, assembled packages were neatly stacked under the large table, the buffet and in every corner.

The front parlor has packaging materials on a table. Next to the table, unassembled boxes are stacked higher than I am tall.

“Tonight, FedEx will bring over a truck,” Andrea explained. The packages are boxed, the boxes labeled and then stored in the truck until it’s full. FedEx then takes the boxes to their facility where they have secure storage.

“Everything ships on the same day. We’ve sent one truck already,” Andrea told me.

Part of why the Margidas went to the cancer camp all those years ago was to teach their children to have compassion and to give to others. Every step along the way, the Valentine Project teaches countless volunteers the value of giving. Giving money, yes, but also time and energy. Giving creative ideas and products, like the pillowcases.

A troop of Girl Scouts came to the Valentine House and colored the heart-shaped return labels that go on every package. Students from the University of Mount Union and Walsh University keep the “shop” organized. They also regularly build and box packages.

In other cities across the state, people offer their homes as drop sites for packages and then drive them to the Valentine House.

“I know we’re not solving world hunger,” Andrea told me, “but we see the impact this has on families. It reminds them they are loved and that there are good people in the world.”

What better message to send on Valentine’s Day?

This was first published in the Akron Beacon Journal on February 11, 2018

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January Stillness

Each December, I look forward to the frozen quiet of January.

Holiday décor goes back in boxes and the boxes go back on shelves in the furnace room. It’s a relief to reclaim the living room as adult space.

For arable farmers, at least in this part of the country, the fall harvest is put up and the spring planting is months away. Walk outside and winter seems to say, rest, try to rest.

Dogs and taking long walks have been two constants of my life. Long before I had kids, I had dogs. And before I had dogs, I walked.

I enjoy many of the trails in our parks, but hike the same one most days. Walking the same path day after day is a subtle gift. Skunkweed that fills coves in the spring is later replaced by wild columbine, which later still is covered over with fallen leaves and then snow.

For the better part of three months, when the temperatures are well below freezing, I rarely see another person on the trail. This is my reward for being undeterred by the cold. A forest muffled by deep snow when even the animals are quiet is a stark reprieve from the sensory clutter of modern life.

Until last week, this winter has been hearty, which is fabulous. The kids can ski and sled. The dogs don’t get muddy. And every night when the temperatures hover around zero, fleas, ticks and mosquitoes are exploding in their winter homes. Hooray! After last year’s balmy winter, we had to spend a fortune on flea and tick treatments for several months.

The epochs of my adult life can be divided by sets of dogs. First were Goldie and Alex, a shepherd mix and a sable sheltie. I got Goldie when I was 17 and both she and Alex died when I was 31 and the mother of two small boys.

Bruce Springsteen once said about having children, “You know, all of a sudden, your dogs are just gonna be dogs.” But those dogs adopted before I was a mother were the hardest to lose. They were my proto-children.

Next came Greta, another shepherd mix, and Hoover, my first tri-color sheltie. When young, Greta could pick off a chipmunk running up the side of a tree and shake it dead before I could holler for her to stop. Though past her prime when we moved to Akron, Greta still enjoyed darting after creatures, including bumblebees, then returning to me over and again.

As years passed, our walks became slower so Greta could keep up. One summer day, as I forged up a steep hill, I realized Greta was no longer with me. I turned and saw her lying on the trail 25 yards behind. I called to her and she looked up at me.

Greta was a smart dog and if you have ever had a truly smart dog, you know how well they can communicate. More than once, Greta woke me in the night, presumably to be let out. I’d walk with her to the door and open it only to find Hoover accidentally left outside. As he trotted in, Greta would lie back down on her bed.

That day on the trail, Greta’s eyes told me she wanted to come, but couldn’t. A dignified dog, she was also embarrassed.

I walked to Greta and helped her stand. She ambled a few paces before dropping back to the ground. Not as heavy as she’d been in her prime, she was still easily 45 pounds. I picked her up like a lamb, my arms around the tops of her four legs, her body on my chest.

I walked as far as I could and set her down. She walked as far as she could before I picked her back up. We repeated this until we crested the hill. Though she lived another year, that was Greta’s last hike.

After Greta died, I brought home Lily, my bi-black sheltie. Hoover was 9 and for the next few years, Lily kept him active. I would watch from my kitchen window as they sneaked up and chased each other around a row of privet.

“Please don’t be dead, please!” said all of us many times after Hoover, at age 12, went deaf. When asleep, he’d lie stock-still until touched, no matter how noisy we were.

That’s when Lily became Hoover’s assistant. When I’d call the dogs to come, Lily would dart to Hoover and let him know to look at me. He would, and then come running as best as he could on his arthritic legs.

I know it sounds like I’m anthropomorphizing my dogs, but dog owners understand it’s true. These pack animals work together.

Now 7, Lily’s the old dog. Angus, my second tri-color sheltie, and Dorothy, my big German shepherd, are barely out of puppyhood. It took Lily awhile to remember how to frisk. She’d lived with a senior dog for so long, she acted like one herself.

Creatures grow up and, if we are lucky, we grow comfortably old before we die.

Statistically, we know some of us will not be so lucky. Before 40, the deaths of friends are rare and often accidental. By middle age, illness, especially the Emperor of All Maladies, begins claiming a life here and there.

In Jules’ small classroom at the Waldorf School, two parents did not live to see their eldest children enroll in high school. The first died of melanoma, the second due to liver cancer. Both were in their 40s.

“To love one another, to have compassion even for those who would do us harm, that is the point.”

Sam’s 5th grade photo below mine.

I turn in my columns on Tuesdays. Before these words from my last column were inked on newsprint, Sam, my friend for more than 40 years, had been killed.

Half an hour before she was shot in the chest, she told another friend she was going home to tell her husband of 33 years she was leaving him.

To lose someone prematurely to illness or accident seems unfair. But in the end, it just is. A death like this requires volition, actively choosing to end a life. The grief for a slaying victim defies acceptance because it didn’t have to be.

Compassion remains the point.

I made the three-hour trip to West Milton, Ohio, for the calling hours. Sam raised four boys to manhood, including her stepson. All four of them stood alongside their mother’s casket and comforted more than 100 people. Sam would be proud.

These young men, their wives and children, and Sam’s parents all need endless compassion as they face the months ahead, which includes a trial.

Back home the next day, a dry snow looked like the rice cereal I once added to my babies’ applesauce. It swirled around my boots as I walked across the field to the woods. The dogs barked and chased one another, delighted to be in the park. Delighted to be alive.

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Buddhist family finds joy and friendship in church choir

Those of you who regularly read this column know we are a Buddhist family. Our children learn Buddhist teachings, stories and, starting at around age 4, how to meditate. At 10, they undergo a 9-day rite of passage at a Buddhist meditation center in Vermont.

So it may surprise you to learn that Max, Claude, Jules and I sing in a Christian church’s choir.

It all started with Hugo.

He first sang at Westminster Presbyterian Church the fall 2011, his freshman year at Firestone High School. The church is also the home of West Side Vocal Academy, which has an ongoing relationship with the vocal program at Firestone. That is how Hugo came to know the church’s music director and organist, Jim Mismas.

We met Jim and his husband, Bruce Stebner, while attending a concert at Westminster. For a couple of years, we’d run into them at performances, in the store where I work or around town. What started as friendly hellos became longer and longer chats until one November Jim and Bruce invited Max and me to a party at their house. Since then, we regularly have each other over for dinners and parties.

A Note to Parents of Young Children

You are in the trenches. Don’t listen to anyone who tells you children don’t get easier as they get older, they absolutely do. And if you are lucky (and by lucky I mean if you raise them to be enjoyable, curious people), your children may one day be vibrant additions to your social circle. Exhibit A: Our big boys have their own close relationships with Jim and Bruce, separate from our own.

Hugo, whose vocal talent first was recognized by Sue Wallin at the West Side Vocal Academy, studied both with Ms. Wallin and Jim. It was Jim who taught Hugo to sight read music, an important skill for a singer. When Hugo gave a recital at Westminster last spring, Jim automatically assumed he’d accompany Hugo on piano. That’s like having David Remnick insist on editing my manuscripts.

When our eldest son, Claude, was still in college, he went to France with Bruce. A professional artist, each summer Bruce takes a group of students to the Loire Valley. They set up easels alongside the river, in villages with cobblestone streets, or country lanes. Painting all day, they break only for lunch.

At night, they eat like the French–long dinners with plenty of wine and conversation. Claude, who’s been painting for several years, sold his first painting to the restaurateur of the establishment they visited most evenings.

Back in Akron, Claude and Bruce regularly paint together.

When our third son, Jules, was scheduling classes for his sophomore year in high school, choir conflicted with biology. Learning this, Jim said, “Well, he should join the church choir.”

The Westminster choir is full of professional singers. Vocalists at Firestone who show talent and industry are honored when asked to sing with the choir. Hugo wasn’t asked until his senior year.

Jules was appropriately grateful for the opportunity Jim gave him. Every Sunday, he put on a dress shirt and tie and walked to church while the rest of us drove to Cuyahoga Falls to meditate with our Buddhist “sangha,” or congregation.

Last June, we celebrated Bruce’s birthday with small party at the couple’s home. Along with other friends, Claude and Jules were there. Hugo would have attended were he not working for the Boston Symphony Orchestra. Leif and Lyra stayed home with a sitter.

The dinner was as French-styled as the backyard—pea gravel pathways weave through herb and vegetable gardens. After sunset, strings of lights softly illuminated the long table covered with floral tablecloths where we sat. Whether or not it was the case, my memory’s soundtrack for the evening includes Edith Piaf and accordion café music.

Departing as late as it would all year, the sunlight was gone when Jim told us he had a secret announcement.

“I’ve been making arrangements with the church, but this won’t be public for a few weeks. I’m retiring after the upcoming season. For 53 years of Sundays I’ve made music for Jesus and it’s time to let someone else take over.”

Stunned, we were all stunned. And full of food, wine and love.

“Oh, I wish I could sing in the choir your last year!” I said.

“Well, you can,” Jim quickly replied, disabusing us of our long-held notion that choir was open only to those with the voices of angels. Max and Claude also signed up that night.

Most Sundays since September, we’ve been at church by 9:15. We drop off Leif and Lyra at Sunday school and for the next hour, we practice with the choir before slipping on our blue robes and golden stoles. Then, processing two by two, we sing our way into the sanctuary for the service.

Guess what? We are having the time of our lives. The choir is a raucous bunch, many of whom are, yes, professionally trained and also graciously helpful. Beginning each week singing beautiful music with joyful friends is, well, a blessing.

But what about sitting through a Christian service?

The young minister, who one-on-one is a quiet man, gives sermons that complement our Buddhist beliefs. At the pulpit he is gentle, yet not shy in addressing important issues.

After Charlottesville, he spoke about the importance of free speech, including hate speech. But he then pointed out the pain of those who are targeted by hateful, often violent, language. We need to stand with, support, and when necessary, protect the victims of hate speech.

To a packed church on Christmas Eve, when many a pastor would try to convert the occasional visitor to a full-time congregant, Westminster’s pastor made a brave choice. Without passing judgment, he asked the crowd to consider how to reconcile believing in Jesus as the Prince of Peace with the overwhelming number of guns, approximately 300 million, or one for each man, woman and child, in the U.S.

I like this guy. And the community at Westminster Presbyterian Church. We all do. It is yet another example of how living in Akron is a gift that keeps on giving.

No, I do not believe all central tenets of Christianity. Buddhist theology also has a miraculous birth story and, just prior to becoming an enlightened teacher, the Buddha was repeatedly tempted by a Satan-like being.

Whether these are facts or allegory is not the point. Love one another, have compassion, even for those who would do you harm. That is the point.

Christmas Eve fell on a Sunday last year. Thus, we sang both in the morning and at the evening candlelight service. Hugo was home from college and also joined the choir that day. Before the morning service, a group of seven good friends clustered together for a photo: Our big boys, Jim and Bruce, Max and me.

Max, Hugo, Jules, Bruce, Claude, Jim and Holly

This column was published in the Akron Beacon Journal on January 14, 2018

 

 

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The problem with Ohio’s Down syndrome abortion ban

Look for the fishies at the KCL pond

In many serious discussions about Down syndrome, abortion is the ghost in the room.

Teaching medical professionals to give accurate and appropriate information when announcing prenatal diagnoses, state funding for early interventions, state funding for K-12 education, federal funding for research, even health care costs — these issues either directly or indirectly relate to the abortions of fetuses with Down syndrome (DS).

I was in my 40s when pregnant with my last two children and knew I had an increased risk of having a baby with Down syndrome. However, I allowed only non-invasive testing because I would not have terminated a pregnancy due to a diagnosis of DS.

With both pregnancies, I was told there were no concerns based on the results of blood work and high-level ultrasounds. At the birth of my last child and only daughter, Lyra, we immediately recognized two markers of Down syndrome, the shape of her eyes and her sandal toes (each big toe is located far from the four smaller toes, as if designed for flip-flops). Later that week, genetic testing confirmed the diagnosis.

We quickly learned that what we thought we knew about Down syndrome was little and mostly incorrect. As a writer, I process difficult issues and emotions by writing. Three months after Lyra’s birth, I began blogging at Whoopsiepiggle.com, documenting my development as a mother of a child with DS.

Our love for Lyra was immediate and fierce. Max and I felt like we were taking a crash course on DS. We worked to give her the best start possible, including regular speech, physical and occupational therapies. But our first years as parents of a child with DS were also filled with enormous fear. On top of that, I was overwhelmed parenting three teens and two tots, regardless of Lyra’s diagnosis.

Soon, we understood that there has never been a better time to be born with DS. In a column on May 6, 2017, “Busting myths on life with Down syndrome” (http://bit.ly/2E9onV4), I outline how people born with DS today can expect to lead lives more alike than different from their typical peers.

Knowing what I do now, I would encourage any woman who receives a prenatal diagnosis of DS to learn the current facts and strongly consider continuing her pregnancy, even if she feels she would give the child up for adoption (the waiting list to adopt a baby with DS is longer than that to adopt a typical baby).

Avoid bias

I speak each fall to first-year medical students at Case Western Reserve University. I encourage them to guard against bias when interacting with patients who have disabilities and their parents.

And yet, this past fall, I told the students that I and many, though not all, parents of a child with DS oppose the state bill outlawing the abortion of a fetus prenatally diagnosed with Down syndrome.

Nobody likes abortion, not even abortion rights advocates. But, legal or not, abortion has been around as long as pregnancy. The solution to lowering abortion rates is to find out why women have them and address those issues.

I learned at the National Down Syndrome Congress convention in 2014 that the termination rate of fetuses diagnosed with DS is higher in Southern states, where elected officials are overwhelmingly Republican and abortions harder to obtain, than in cities in the North. The reason given is simple — services and supports for children with disabilities are limited in many parts of the South.

In recent years, Denmark and Iceland have adopted policies to entirely eliminate people with DS from their populations. All women receive free prenatal testing in these two countries and are encouraged to terminate when a fetus is discovered to have DS.

Most do, but not all. I know a woman raising a child with Down syndrome in Denmark. Because there are so few children with DS in that country, supports are commensurately limited. And this, I suspect, contributes to many other women choosing not to carry a fetus with Down syndrome to term.

Ethicists around the globe have called for women to terminate pregnancies of children with DS. Richard Dawkins, a Brit, claims doing so reduces suffering. This flies in the face of all research conducted on people with DS and their families.

Australian ethicist Peter Singer, much of whose work I find enlightened and inspiring, believes fetuses with DS should be aborted because they increase the cost of health care for the rest of a country’s citizens. Determining the value of a human life based purely on cost is a slippery slope. What happens when one day we can prenatally test for schizophrenia, bipolar disorder, autism or addiction?

Funds for testing

In the United States, funding for DS research overwhelmingly favors further development of prenatal testing over the development of drugs to improve health and cognition. The primary point of prenatally diagnosing a fetus with DS is to allow for the option of termination. Thus, federal research dollars effectively promote elimination over amelioration.

I know a family who moved back to Northeast Ohio shortly after giving birth to a son with DS. The region where they were living in Michigan had little access to the medical care and educational programming important for a child with DS.

I know a family that moved from Akron to Bath because they felt their child with DS would receive a better education, with more supportive services, in Revere schools than in Akron Public Schools.

In Ohio, the state provides services to children with DS through the county developmental disability (DD) boards for the first three years of life. Then, from age 4 to 22, state services are administered through the public schools.

Our statehouse is controlled by the Republican Party and has been for many years. The same legislators who voted to outlaw abortion of fetuses with DS also voted this past year to remove language that would have increased funding to county DD boards.

The federal Individuals with Disabilities Education Act guarantees as a right for children with disabilities, including DS, a free, appropriate public education. And yet everyone knows all Ohio school districts are not created equal. Some families, like the one I mentioned, move to districts with better resources. But for many that is not an option.

Furthermore, just because a child is guaranteed an education doesn’t mean schools comply, and parents regularly sue school districts for enforcement. Here in Ohio that happens in the Sixth Circuit of the U.S. Court of Appeals.

The Sixth Circuit has a mixed record with disability rights. A recent decision stated a school could not be penalized for strapping a preschool child with disabilities to a toilet with a leather belt because it was part of the school’s pedagogy. Think about that.

Ultimately, I believe underlying the move to eliminate people with Down syndrome is a bias against people perceived to have lower intelligence. Therefore, this is for me an issue of civil rights.

Which is why it’s important to point out that the law outlawing the abortion of fetuses with DS has little, if anything, to do with protecting people with DS. If our state legislators truly cared about this population, they’d put our money where their mouths are.

They’d adequately fund county DD boards, including everything from early interventions for babies to job training and housing with qualified, well-paid staff for adults.

All of Ohio’s public schools would receive the funding to provide equitable education for all students, including those with developmental or intellectual disabilities.

Today, Ohio women wanting to terminate a pregnancy in which the fetus has been diagnosed with DS will need to travel to a state where it is legal. And those who do not or cannot will find themselves in a state that inadequately addresses the needs of their children.

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Give Generously and Benefit Greatly

Give generously. While this may sound like a contradiction to my previous column on giving lightly, it is not. Let me explain.

Falling prey to the Madison Avenue depictions of Christmas trees exploding with wrapped gifts from under their boughs will not bring endless happiness to your children. In fact, it is more likely to promote agitation.

Consider instead giving a few choice presents while using this festive season to talk to your kids about the benefits of charitable giving.

Every December solicitations from non-profits fill both email and postal boxes. Give to a charity before the New Year’s Eve ball falls on Times Square and another tax deduction for the year may be gained.

Christians take to heart Matthew 25:34-40 in which God blesses those who give to people in need and visit the sick and imprisoned, for it is the same as giving to the Lord. We who live in warm homes with stocked cupboards and closets full of clothes and shoes are indeed fortunate.

In December 2010, I read an article to my boys from Parade magazine on the Shoestring Philanthropist, Marc Gold. In 1989, Gold toured India and found small donations were often life-changing or even life-saving. One dollar bought antibiotics for a woman who would have died without them. Thirty-five dollars bought her a hearing aid that allowed her to return to work.

Impressed by how such small sums of cash could bring such great good, Gold asked 100 of his friends to donate a little money. They did and his non-profit, 100 Friends (100friends.org), was created. Through 100 Friends, Gold has helped thousands of people in more than 50 developing countries.

Lead by example

Children take most to heart not what we parents tell them, but what we do. And what I show my children, I hope, is that while generosity is highlighted at this season, it should not be restricted to one month of the year.

With a credit card, I make monthly, automatic donations to several non-profits that are important to me. While my kids couldn’t list these organizations, they know there is a list and that WKSU is on it (a dollar a day) because I dole out the members’ swag. My boys proudly wear sweatshirts, scarves and hats bearing our NPR station’s logo.

Last December at age 16, Jules gave to the Coral Reef Foundation and the Rainforest Trust. He also bought his first Federal Duck Stamp. Issued by the U.S. Fish and Wildlife Service, the Federal Duck Stamp is one of the oldest conservation efforts in the nation, having raised over $950 million since it was introduced in 1934.

Giving one-time or monthly gifts are great ways to help organizations doing valuable work. But what about the people in your daily life? Those people who, throughout the year, make you look good, live well, and give you added time by doing work so you don’t have to?

Because you are a faithful subscriber to Ohio’s best daily newspaper (right?), you know your paper carrier is up long before sunrise, delivering the Akron Beacon Journal to your door before your alarm clock bleats. This month, give your carrier a card with some cash in it. We give $20.

Rain, snow, sleet and heat waves are nothing for the men and women of the U.S. Postal Service. Not only do they bring your mail six days a week, mail carriers are the eyes and ears of a neighborhood. Your mail carrier may one day stop a crime or save your life. Again, give them a card with some cash.

If you are so lucky as to have someone else clean your house, give a year-end bonus. And for the love of all that is right in the world, if you leave town for the holidays and won’t need your home cleaned, still pay the person! Your cleaning person’s bills do not go away when you do.

You put your head in the hands of your hairdresser several times a year. It’s nothing short of foolish not to tip them well. Tip generously all year and you’ll hardly notice the difference, but your stylist will. The same goes for nail technicians. And at the end of the year, tip extra.

I wish everyone had to work as a server the summer before graduating high school. Thereafter, when dining out all people would always tip well and behave graciously. Ohio’s minimum wage for tipped employees is currently $4.05 an hour. Nobody can earn a living wage on $4.05 an hour.

Tip well because it’s the right thing to do.

How much? Twenty percent is an easy sum to mentally calculate and in most cases — whether tipping a server, hairdresser or nail tech — the difference between 15 and 20 percent is little more than a cup of Starbucks coffee.

Giving benefits givers

Giving generously benefits not only the recipient but also the giver. Repeatedly, studies have shown people with fewer resources give more generously, and more often to strangers, than the wealthy. The less you make, the more you understand the struggles of others.

And yet the wealthiest person can benefit from philanthropic giving, even when initiated for less than charitable reasons.

Few may remember that in the 1990s, Bill Gates was almost universally despised. In 2000, a U.S. federal judge determined Microsoft had engaged in anti-competitive practices resulting in a monopoly that should be split apart. I was pregnant with Jules and remember everywhere I’d go people were having schadenfreude-filled discussions about the decision.

Today Jules is 17 and most people think Bill Gates is a pretty nice guy. What happened? That same year the U.S. justice department was going after Microsoft tooth and claw, Gates and his wife Melinda launched the Gates Foundation. Coincidence? I don’t think so.

Like many at the time, I believe the Gates Foundation was created to improve public opinion of Bill Gates and his mega corporation, Microsoft. But I also believe, as is often the case with philanthropists, that the work of the Gates Foundation has changed its funder for the better.

Fighting hunger, disease and overpopulation, while also working to improve education, in over 100 countries has made Mr. Gates a passionate advocate of those who are the least among us.

So please, give generously for everyone’s sake, including your own.

Merry Christmas!

This column first appeared in print in the Akron Beacon Journal on December 17, 2017

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Giving lightly is good for kids and the planet

My eldest child will turn 24 next month. This means I have been acquiring toys for nearly a quarter of a century.

That first year I was a mother, we often visited friends who had a 3-year-old. In their living room were neatly organized baskets filled with animal figures, blocks, books. I was in graduate school at the time (read: poor) and remember wondering if my little boy would ever have such lovely toys.

Now I envy the clutter-free sparseness of those early years.

In the mid-’90s, I scoured thrift stores where I scored wooden train sets and, years before they became collectors’ items, old Fisher-Price toys. We have the wind-up record player, the wind-up radio, the barn set and many animals.

Over the years, I chose toys thoughtfully. Few were plastic, none electronic. Blocks, puppets, animal figures, wooden train sets, games, puzzles, Magnetix and lots of books.

The year my third son turned 10, I likely would have begun shedding our toy collection.

But instead, I gave birth to my fourth son. And so I kept all we’d acquired in the 16 years before Leif was born. And though he was born into a household with an enviable collection of toys, not surprisingly, he still expects presents.

The cost of too much

Kim John Payne is a family therapist and educator whom I heard speak many years ago. After working in refugee camps with children who never knew anything but uncertainty due to war, Payne moved to London. There he discovered middle-class children exhibiting similar symptoms of post-traumatic stress disorder (PTSD) as refugee children, though they’d not experienced traumatic events like the refugees.

What gives? Payne coined the term “cumulative stress reaction” or CSR, and claims that both groups of children were suffering from overactive amygdalae, the part of their brains that controls survival instincts, i.e., what to do when threatened. Fight? Run? Freeze?

In his book Simplicity Parenting, Payne recommends a number of things to restore calm to the children suffering from CSR. What struck me most were his visits to the homes of families in his therapy practice. He’d arrive while the child was at school. In the child’s bedroom with the parents, Payne would pull out a garbage bag and tell the parents to fill it.

Inevitably, this task was difficult. Each toy, book, trinket was somehow special but Payne was uncompromising and the bag was filled. And then he’d pull out a second bag. And then a third.

“What happens when your child only has 10 books to choose from? Predictability, that’s what,” Payne said when I heard him speak.

Yes, I’m sure most kids who returned home to discover themselves relieved of three trash bags of toys were none too happy about it. But who does not feel calmer and think more clearly after finally clearing off a cluttered desk, room or home?

Christmas roundup

Now here comes Christmas. (Yes, these Buddhists celebrate Christmas with gusto.)

Most years I assess things during the first weeks of December. Games and puzzles with missing pieces are tossed, as are books with missing pages. Anything broken is also chucked. Toys everyone has outgrown are donated. (I keep a small box of toys for visiting babies and toddlers.)

When the big boys were little, the only gifts I bought them were stocking stuffers. The big gifts were what the relatives sent. They still had plenty.

Leif was nearly 3 years old when he had an inkling of what’s happening on Christmas morning. He pulled the paper off his first present, a small set of Thomas the Tank Engine trains and a floor map on which to move them about. Leif played with Thomas not only the rest of Christmas Day, but also for a week or more while all of his other presents remained wrapped and under the tree.

I still fill the stockings. But now the big boys get more practical things like lip balm, gift certificates, shaving cream. Under the tree, I give them what I want to receive: Good socks. I believe good socks and underwear go a long way in making life better. If you doubt me, think how miserable uncomfortable underwear and droopy socks make you feel.

Here’s an unabashed product plug: Bombas socks. I’ve given each of the big boys two pairs of their merino wool socks for a few years now. For each pair of socks purchased from Bombas, the company donates a pair. According to their website, socks are the No. 1 item requested in homeless shelters and Bombas has donated over 5 million pairs of socks to date. Now that’s an all-around feel-good gift.

The truth is, while the big boys like Christmas presents, without childhood magic, it’s just a relaxing morning in our pajamas. Last year, Claude told me the best part of Christmas for him now is watching people open the gifts he’s given them.

Buy, buy, buy

Maybe one day we’ll be one of those families who take a trip over the last week of the year. But for now, we still have our two littles, Leif and Lyra. And I admit, each year I struggle to fight the crushing message to buy, buy, buy!

It is well documented that Americans disproportionately consume the earth’s resources when compared not only to Third World and developing countries, but also other industrialized nations. A continuous loop of manufacture, sell, use briefly and discard underpins our economy.

Nonbiodegradable plastics fill our landfills and waterways. Microplastics have entered the marine food chains, which should be a concern for anyone who eats seafood.

I work part-time in a store that sells toys and other really cool things, and I am just as susceptible in the final days of holiday shopping to worry that I have enough for each person to unwrap. In my office closet are toys I bought last December. As we were frantically wrapping everything after the littles had gone to bed last Christmas Eve, I realized it was too much.

And what does giving too much end up doing to your children? Well, possibly giving them a version of PTSD. It’s not good for the planet and it’s not good for the kids.

I intend to give lightly this Christmas, purchasing just a few quality items my family members need. With my intention published in this paper, perhaps this year I can resist the pressure and temptation to spend more than I should on things we don’t need.

Heck, once I wrap the toys hiding in my office, I’m quite possibly done!

This was first published in the Akron Beacon Journal December 3, 2017

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Giving Lightly–It’s Good All Around

My eldest child will turn 24 next month. This means I have been acquiring toys for nearly a quarter of a century.

That first year I was a mother, we often visited friends who had a 3-year-old. In their living room were neatly organized baskets filled with animal figures, blocks, books. I was in graduate school at the time (read: poor) and remember wondering if my little boy would ever have such lovely toys.

Now I envy the clutter-free sparseness of those early years.

In the mid-’90s, I scoured thrift stores where I scored wooden train sets and, years before they became collectors’ items, old Fisher-Price toys. We have the wind-up record player, the wind-up radio, the barn set and many animals.

Over the years, I chose toys thoughtfully. Few were plastic, none electronic. Blocks, puppets, animal figures, wooden train sets, games, puzzles, Magnetix and lots of books.

The year my third son turned 10, I likely would have begun shedding our toy collection.

But instead, I gave birth to my fourth son. And so I kept all we’d acquired in the 16 years before Leif was born. And though he was born into a household with an enviable collection of toys, not surprisingly, he still expects presents.

The cost of too much

Kim John Payne is a family therapist and educator whom I heard speak many years ago. After working in refugee camps with children who never knew anything but uncertainty due to war, Payne moved to London. There he discovered middle-class children exhibiting similar symptoms of post-traumatic stress disorder (PTSD) as refugee children, though they’d not experienced traumatic events like the refugees.

What gives? Payne coined the term “cumulative stress reaction” or CSR, and claims that both groups of children were suffering from overactive amygdalae, the part of their brains that controls survival instincts, i.e., what to do when threatened. Fight? Run? Freeze?

In his book Simplicity Parenting, Payne recommends a number of things to restore calm to the children suffering from CSR. What struck me most were his visits to the homes of families in his therapy practice. He’d arrive while the child was at school. In the child’s bedroom with the parents, Payne would pull out a garbage bag and tell the parents to fill it.

Inevitably, this task was difficult. Each toy, book, trinket was somehow special but Payne was uncompromising and the bag was filled. And then he’d pull out a second bag. And then a third.

“What happens when your child only has 10 books to choose from? Predictability, that’s what,” Payne said when I heard him speak.

Yes, I’m sure most kids who returned home to discover themselves relieved of three trash bags of toys were none too happy about it. But who does not feel calmer and think more clearly after finally clearing off a cluttered desk, room or home?

Christmas roundup

Now here comes Christmas. (Yes, these Buddhists celebrate Christmas with gusto.)

Most years I assess things during the first weeks of December. Games and puzzles with missing pieces are tossed, as are books with missing pages. Anything broken is also chucked. Toys everyone has outgrown are donated. (I keep a small box of toys for visiting babies and toddlers.)

When the big boys were little, the only gifts I bought them were stocking stuffers. The big gifts were what the relatives sent. They still had plenty.

Leif was nearly 3 years old when he had an inkling of what’s happening on Christmas morning. He pulled the paper off his first present, a small set of Thomas the Tank Engine trains and a floor map on which to move them about. Leif played with Thomas not only the rest of Christmas Day, but also for a week or more while all of his other presents remained wrapped and under the tree.

I still fill the stockings. But now the big boys get more practical things like lip balm, gift certificates, shaving cream. Under the tree, I give them what I want to receive: Good socks. I believe good socks and underwear go a long way in making life better. If you doubt me, think how miserable uncomfortable underwear and droopy socks make you feel.

Here’s an unabashed product plug: Bombas socks. I’ve given each of the big boys two pairs of their merino wool socks for a few years now. For each pair of socks purchased from Bombas, the company donates a pair. According to their website, socks are the No. 1 item requested in homeless shelters and Bombas has donated over 5 million pairs of socks to date. Now that’s an all-around feel-good gift.

The truth is, while the big boys like Christmas presents, without childhood magic, it’s just a relaxing morning in our pajamas. Last year, Claude told me the best part of Christmas for him now is watching people open the gifts he’s given them.

Buy, buy, buy

Maybe one day we’ll be one of those families who take a trip over the last week of the year. But for now, we still have our two littles, Leif and Lyra. And I admit, each year I struggle to fight the crushing message to buy, buy, buy!

It is well documented that Americans disproportionately consume the earth’s resources when compared not only to Third World and developing countries, but also other industrialized nations. A continuous loop of manufacture, sell, use briefly and discard underpins our economy.

Nonbiodegradable plastics fill our landfills and waterways. Microplastics have entered the marine food chains, which should be a concern for anyone who eats seafood.

I work part-time in a store that sells toys and other really cool things, and I am just as susceptible in the final days of holiday shopping to worry that I have enough for each person to unwrap. In my office closet are toys I bought last December. As we were frantically wrapping everything after the littles had gone to bed last Christmas Eve, I realized it was too much.

And what does giving too much end up doing to your children? Well, possibly giving them a version of PTSD. It’s not good for the planet and it’s not good for the kids.

I intend to give lightly this Christmas, purchasing just a few quality items my family members need. With my intention published in this paper, perhaps this year I can resist the pressure and temptation to spend more than I should on things we don’t need.

Heck, once I wrap the toys hiding in my office, I’m quite possibly done!

This was first published in the Akron Beacon Journal December 3, 2017

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Thankful for Thanksgiving

This coming Tuesday, Max will bring home our pasture-raised, freshly killed turkey. I will be waiting for him in the kitchen with a bottle of dry Riesling.

No, not to toast the beginning of Thanksgiving, but to mix with kosher salt and several herbs. The turkey will go in a brining bag placed inside our largest cooler. Pour the wine brine on the turkey, seal the bag, surround it with ice, close the cooler and load it into the back of the minivan.

Check, check, check, check. We’re almost ready.

Earlier that day, someone — it’s beginning to look a lot like me — will drive to Rochester to pluck Hugo from college. The house sitter will stop by for an introduction to the four animals we’ve acquired since last Thanksgiving. “Has it been a year again already?” we’ll say to each other.

Food, wine, small gifts will be packed next to the turkey’s cooler that night so in the morning we can toss our clothes and toiletries in the cars and go.

Wednesday, when we’re all antsy to hit the interstate before 9 a.m., someone will suggest coffee and breakfast from Starbucks so we won’t have to clean the kitchen.

And for good reason. It’s a seven- to eight-hour drive to Grandma and Grandpa’s house in Northern Michigan.

When the big boys were little, we went home for Thanksgiving every other year. Since 2012, however, we’ve made the trip each year. One reason is that the grandparents’ next-door neighbor, who ironically spends Thanksgiving in Ohio with her children, graciously encourages us to stay in her empty home. Looking back, I can’t imagine how we used to make the Thursday feast with only one stove and oven.

Grandma is a culinary prodigy. When her own children lived at home, she used a bread mixing bucket our Mormon ancestors hand-carted across the American plains a century earlier to make all our bread, 10 loaves every two weeks. Compared to her granola, the stuff sold in stores seemed like rolled flakes of cardboard. Her renowned burritos included tortillas made from scratch with masa harina.

After Grandma cooks him, Max carves Tom Turkey

Thanksgiving is Grandma’s magnum opus. A few things have changed over the years: We’ve added Mama Stamberg’s cranberry relish to the table. Instead of steamed broccoli and cauliflower with cheese sauce, we’ve improved the classic green bean casserole topped with French’s Crispy Fried Onions. If you use fresh beans and homemade white sauce, it’s not a pasty soup-like dish, but refreshingly light with the canned onions adding a savory crunch.

Sacrosanct are Grandma’s core dishes: the turkey, stuffing, gravy, fruit salad, herbed rolls and pies. Years ago, she wrote all her Thanksgiving recipes down for me and taught me how to make pies.

Pies are one of the few baked goods I make and I think mine are now as good as Grandma’s (some might say they’re a wee better because I use lard for my crust instead of Crisco, but don’t tell Grandma).

Yet neither Jules, who had a two-year preoccupation with bread baking, nor I can master Grandma’s herbed rolls.

Watching her, it looks so easy. Mix whole wheat dough with herbs, roll three small balls for each muffin cup, add a dollop of butter and bake. Warm from the oven, their knobby tops are crispy, their insides chewy without being tough. They alone are worth the drive.

“I can’t wait for Thanksgiving,” is the refrain said with increasing frequency by all the big boys starting when school resumes in the fall.

That’s also when Max starts bringing home different bottles of wine, telling me not to open them because, “These are for Thanksgiving!”

Why do we love this holiday so deeply? More than any other?

We’ve talked about it. Gift giving can be stressful and seem contrived. Not a problem at Thanksgiving. And with no specific religious component, Thanksgiving is every American’s holiday. We can all be grateful and give praise to any or no deity.

Close quarters and full bellies–Claude and Hugo

At Thanksgiving our family is both all together and unplugged from the chug-a-chug of our busy lives, with cooking and washing dishes our only chores. Because we are not at home, we are guilt-free for not using the long weekend to take care of projects around the house or at work.

Instead, Max brings his toolbox and revels in helping Grandma fix this and that at both her house and the neighbor’s where we stay.

The big boys and Grandpa, who’s a sexton, drive out to the cemetery. They help clear away the remaining leaves and do whatever needs to be done before the deep cold of winter in Northern Michigan takes hold. It is there that the boys connect with Grandpa, a laconic man who, behind his curmudgeonly aspect, is as soft as a jet-puffed marshmallow.

Otherwise we eat, watch movies, eat, play euchre, eat, listen to Hugo sing and play guitar, eat.

Lyra running to see Santa

To keep our livers from overloading on the rich and plentiful meals, we walk daily along the icy shore of Lake Michigan. The day after Thanksgiving we stroll to town, get our picture taken with Santa and watch as the 20-foot pine tree lights up in the park next to the marina, now void of boats, for the first time that holiday season.

And when there’s snow, we head to Dodger’s Hill, a short cross street with a steep incline that the city doesn’t plow all winter long, leaving it for tobogganers of all ages.

Being busy is like a chronic disease in modern America. Everyone says how busy they are as though not being busy is unacceptable. I try not to overschedule my children with extracurricular activities, instead letting them wander around the house bored. If they complain, I give them a job. They all learned to self-entertain at an early age.

Yet try as I might, I fall into the busy trap. I freelance from home, work part-time in a store (a sanity boost), care for five children all of whom have needs, volunteer both locally and for national Down syndrome groups. You get the drill, and undoubtedly have one of your own. Balancing what is important with what is necessary is easier some weeks than others.

Max and the big boys also step into the busy trap. Especially Hugo and Jules, who are juggling both school and work.

Over the years our solidarity on celebrating Thanksgiving with the grandparents at their house has only grown. For a handful of days, we relax together with few unwanted distractions.

All things truly are transitory.

Eventually this cherished family ritual will end. Knowing this makes each year all the sweeter, my gratitude all the greater, for the time I have with my family on this, our favorite holiday weekend.

Happy, happy Thanksgiving!

This was first published in the Akron Beacon Journal on Sunday, November 20, 2017

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Don’t Let Your Sons Grow Up to Be Predators

One of my favorite books by Richard Scarry is The Bunny Book. In it, family members of a baby bunny wonder what he will be when he grows up. Cowboy? Firefighter? Doctor? Farmer?

No, none of these. What baby bunny wants to be when he grows up is a daddy bunny who cares for his children. Rather avant-garde kid lit when first published in 1955, The Bunny Book is as relevant today as ever.

When my eldest son, Claude, was in kindergarten, I read The Courage to Raise Good Men by Olga Silverstein. A therapist, teacher and mother, Silverstein argued against the belief that mothers need to let go of their sons and that boys must avoid emotions associated with women.

We all know the clichés: Stop coddling that boy. Big boys don’t cry. Mama’s boy. Feminization of men is destroying the nation.

However, after working as a family therapist for more than three decades, the most common marital problem Silverstein saw was men who were emotionally disconnected. She determined that not nurturing the emotions of sons results in “lost boys, lonely men, lousy marriages, midlife crises.”

And, I would add, an increase in the dehumanization of women. If a man is emotionally disconnected, he cannot empathize with the feelings of others. Couple this with the vigorous patriarchy of our society and too often women become little more than objects, conquests to be taken either by charm or force, then discarded like a used napkin.

Anyone who’s been conscious this past month has heard about movie producer Harvey Weinstein’s long history of sexually assaulting women. Also hard to miss has been the #MeToo campaign in which women who have been sexually harassed or assaulted are posting these two words on their social media accounts.

Men in powerful positions preying on women and getting away with it for years is a scandal that repeats all too regularly. And the sad truth is for every Harvey Weinstein, Roger Ailes, Bill Cosby or Bill O’Reilly, there are thousands of other predators who are never stopped.

Protecting daughters

My only daughter has Down syndrome. The rates of sexual abuse of people with intellectual disabilities, both men and women, are higher than for the general population. My plans to protect Lyra are the same as they would be for a daughter who did not have Down syndrome: talk openly with her about sexuality, what is appropriate, what is not and how to protect herself from sexual harassment and assault.

Yet until there is a wholesale change in how our culture views women and the men who violate them, I will worry for my daughter’s safety. As most any parent of any daughter does. It’s a second #MeToo that walks hand-in-hand with the first.

I have four sons who believe women are fully human, which makes them feminists. I recently asked the three big boys why they treat women as their equals, and why they disparage men who do not. What was it in their upbringing to make them different from the predators we hear about in the news and, horrifyingly, some of my sons’ peers?

Their answer? Nothing and everything.

Nothing in that there is no single thing I did or said that made my sons respect women as their equals. Sure, I’ve given them all the “No means no, even if first she said yes” talk. But that alone did not form their feminist beliefs.

“Because you’re our mom,” said 20-year-old Hugo, “that’s everything.”

Lyra and Leif play with the fairy outfits they both received in their Easter baskets this past spring.

My children were never forced into rigid gender roles. They had some superhero pajamas but others patterned with fish, stars or gnomes. When Claude was 3, he wanted to dress up as a witch for Halloween. Rather than tell him only girls can be witches, I bought him a pointy hat, a small broom and a wand.

My boys played with Brio trains and Matchbox cars, but they also had stuffed animals and, yes, dolls. For boys, just like girls, may one day grow up to be parents.

As for girls, Hugo also pointed out that all three of my big boys have maintained friendships with girls starting in toddlerhood. While many boys and girls start to self-segregate by gender around the fourth grade, my boys did not.

Claude’s best friend for years was a girl he met in the first grade. At Miller South School for the Arts, Hugo studied art and musical performance, concentrations with more girls than boys. As for Jules, who looked like a girl until he cut his long blonde hair at age 12, he is drawn to people who are thoughtful, curious and nonaggressive. Some are men, more are women.

Guiding sons

Letting boys be fully emotional when they are little should be easy. Don’t shame them for crying when hurt or for telling you when they are scared. I hug my boys and tell them I love them every time we part. As adults, they do the same not only with Max and me but also with each other.

Many adults find emotional teens difficult. They are physically big and verbally articulate. It’s hard to always remember with a teenager that there are no wrong emotions; emotions just are, and need acknowledgment. Even if the teen is telling you what an awful parent and person you are. My advice? Buck up and lean in.

One day when Claude was 15, we were driving with his brothers and Max to a swimming spot in the Chagrin River. Claude didn’t want to go and refused to speak.

“Claude won’t talk because he’s mad I made him come with us,” I said after a question from Max had been met with stony silence.

Still looking out the car window, Claude said, “Shut up,” then paused before saying, “you bitch.”

I told Max to pull the car over. He parked and I told Claude to give me his cellphone and get out of the car. Two hours later when we returned to Max’s locked-up house, we found Claude, drained of both anger and energy, drinking from the hose in the backyard.

At the time, I was two years into my 39-month divorce. Divorce is hard for kids. Claude, who was angry with his father in general, felt guilty when he was angry with me over everyday stuff and held it in.

“Look,” I told him, “you are allowed to be angry with me; I can take it. Don’t bottle it up until it explodes and then you say things to me that you will never, ever say to me again, understand?” We talked for over an hour in Max’s basement that afternoon.

Two days later, as I drove us home from a school event, Claude spoke of his deeper fears and emotions. It was dark when I parked in our driveway where he and I stayed and continued talking for two more hours.

The manliness of my sons is in no way diminished for their emotional connectedness. It is enhanced, as they are able to be fully present for women, men and themselves.

If, as a society, we are ever going to make significant progress toward ending the pervasiveness of men harassing and assaulting women, it will be when more families have the courage to raise men with the full range of emotions, not just anger and a sense of entitlement.

This essay was first published in the Akron Beacon Journal on November 5, 2017.

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Sweet Halloween Traditions

When I was a girl, I kept a running list. Each item on the list started with the words: “When I’m an adult I will …”

Today I only remember how a handful of those sentences ended. One was “… buy nice toilet paper like Charmin.” This was because my mother used the five-finger discount at the bars where she worked, filling her saddlebag-sized purse with, among other things, POM industrial toilet paper. It was as soft as a cat’s tongue.

Also on the list was “… buy fantastic candy for trick-or-treaters.” I am happy to honor this promise made by my child self to my adult self. However, for eight years we lived on Oakdale Avenue in a neighborhood with few children. On the Saturday before Halloween, Akron’s official Beggar’s Night, the houses on our street were mostly dark. As a result, for years the boys and I returned to Ohio City, where we had lived in Cleveland, to trick-or-treat with friends.

Then, in summer of 2011, we moved to a home in the heart of West Akron. That October I excitedly bought dozens of full-sized Kit Kats, Butterfingers and Reese’s Peanut Butter Cups.

Claude and Hugo were still in high school and agreed to hand out the candy so Max and I could both take Jules and Leif trick-or-treating (Lyra was born the following summer). The boys conspired to have Hugo pass out the treats while Claude, made up as a monster and cleverly hidden in a pile of leaves, would jump out and scare the kiddies.

Their plan was a bust, as not a single costumed kiddo came a-begging at our door. After an hour of waiting for the doorbell that never rang, the big boys instead watched horror films and ate a good way through the stash of candy bars. (Claude and I hid from each other, found and re-hid the remaining Butterfingers, our favorite candy bars, for several days.)

Jules and Leif, Beggar’s Night 2011

Perhaps our street is too busy or the houses too far apart for trick-or-treating. More likely,however, is something else Max and I learned that night: The residents on the cross streets a stone’s throw from our house so overwhelmingly participate in Beggar’s Night, it feels like a festival.

And by participate, I don’t mean they just hand out candy.

The first house we stop at each year is haunted. Walk in the front door and follow a pathway that winds through the living room, over to an inky-dark enclosed porch and out the back door. Along the way animatronic ghosts, ghouls, spiders and skeletons greet each visitor. The bowls of candy are equally active. Uncle Fester’s head chats away in one, while a hand, presumably Thing, tries grabbing the hands of treat takers in another.

Further down the street is a pirate who is more than a little intimidating when trick-or-treaters first approach him. For those who are brave, he not only hands over candy, he’ll sing a rollicking pirate song.

One of many decorated yards in our neighborhood

Around the corner is a house in which the entire front yard is repurposed into an elaborate graveyard full of skeletons, vampires, werewolves and other creepy creatures. The first week of each October, the grave keeper starts building his cemetery, first erecting a faux wrought iron fence, then tombstones start popping out of the ground and so on until the entire piece de resistance comes together on Beggar’s Night.

In more houses than not, groups of adults sit in driveways around a fire, many drinking beer, all enjoying the evening. They ask the kids about their costumes and are overwhelmingly generous with their treats.

My child self dreamed of a neighborhood like this.

So do children today, which is why many people come from other neighborhoods to trick-or-treat in ours. And the neighbors welcome everyone. Being generous with Halloween candy, big bags of which are only a few bucks at any grocery store, is an easy way to spread sweet joy.

After three blocks of dense trick-or-treating, Leif begs to stop. He wants to return to the first house, the one that is haunted, before we head home. This has become our ritual.

This year, Leif started anticipating Halloween as soon as school resumed in late August. All this month, he has asked us to slow down when we drive past the house that will be haunted. He wants to see if the owners have started putting it together.

“You know, except for the presents, I think Leif likes Halloween as much as Christmas,”

said Max on a recent drive-by of the haunted house. Leif’s not alone. Not only in West Akron but also across the country, Halloween has vaulted beyond jack-o-lanterns and candy to a big-time holiday.

Sure, much of this has to do with retailers getting us to buy more things we don’t really need. I have two large storage tubs of Halloween décor, one with tabletop ghosts, skulls, ravens, candles and more for indoors and the other filled with things to spooky up our yard. All of which 7-year-old Leif adores arranging and attending, each night turning on anything that lights up or moves.

The job of a parent is multifactorial. We are tasked with the health of children’s bodies, minds and spirits. But one more responsibility, which I did not recognize until my first two boys were old enough to reminisce, is this: Parents are the curators of their children’s memories.

No matter which ones you celebrate, holidays are excellent fodder for memory-making. I have no doubt that one day Leif and Lyra will look back with fondness at the Beggar’s Nights of their childhoods in Akron.

And as for my childhood promise to hand out fantastic candy, I have a plan.

When Leif and Lyra no longer need us to marshal them to the door of each house, Max and I will dress as medieval peasants. One of us will pull a wagon laden with full-sized candy bars, followed by the other who will shout, “Bring out your dead!” and ring a bell.

And in our neighborhood of Halloween fanatics, this treat caravan (a riff on Monty Python and the Holy Grail) will fit right in.

This essay was first published in the Akron Beacon Journal on October 22, 2017

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Choosing Words to Live By

This was first published in the Akron Beacon Journal on August 27, 2017

Call them slogans, mantras or sayings. Chosen thoughtfully, they can reflect a personal moral code. If your actions, words or even thoughts don’t jibe with your moral code, don’t waste time deliberating. Variations of “Do unto others as you’d have others do unto you” probably tops the list of universal sayings. Other slogans, however, are specific to a person, family or community.

Years ago, my graduate adviser told me to pick one word as a guiding note when writing my thesis. It was a travel memoir about the cross-country road trip I took with my three sons the summer I told their father I wanted to separate. One word for what ended up a 13-chapter book took some thinking, but not so much as you might expect.

“Rooted” gave spine and structure to my thesis. That may sound odd for a story about traveling thousands of miles with three boys in a five-speed Matrix, but the time and space clarified my decisions. Having quit my supporting role to my ex-husband’s starring one, I declared what I needed in a marriage.

And, perhaps more importantly, after more than 40 years of peripatetic living, in 2007 I solidly planted my flag in Akron, a city my ex never wanted to live in and could not wait to leave.

The divorce was a tedious 39-month passage from who I was to who I became. Repeated readings of William Ury’s books on mediation guided me in choosing a phrase for saying no. When I learned my ex regularly drove all three boys in his Tacoma pick-up that seated only three, I told him, “I’m not comfortable with that.”

It’s also what I said the final time I found him in my home, against court orders.

“Just what do you think I’d do?” he said, trying to change the subject.

“It doesn’t matter, I’m just not comfortable with that.”

When he sneeringly mocked my words as he pushed his way to the door, I recognized how much they’d empowered me.

Finding values

Perhaps all slogans empower, because in order to have one, you must know what you value.

My parenting mantra is “push and lift, push and lift.” Push your kids to work hard on what’s important, including their personal goals. Lift them by showing up and supporting their efforts. And sometimes parents do best by letting children fail.

Helicopter parenting has taken off in recent years. If the goal of parents is to act as agents for their children in perpetuity, then, by all means, they should hover over their children. And lest you think I’m being cheeky, the New York Times recently published an article on the rise of parents insinuating themselves into their children’s job interviews, salary negotiations and even on-the-job disciplinary actions.

My goal is to raise competent adults who can take care of themselves and enjoy life based upon their own definitions of success.

Like a magpie, 20-year-old Hugo has long been drawn to everything interesting on his path. At Firestone High School, he took academic courses in the summer because he couldn’t fit them, or even a lunch period, in during the school year. An instrumentalist who sang his freshman year, Hugo graduated a singer who plays instruments.

The fall of his senior year, Hugo was section leader for the marching band, applying to colleges and preparing for vocal competitions. By October, he’d lost 20 pounds and complained of indigestion. I quietly monitored his health while waiting for him to realize something had to give.

When his indigestion turned into chest pains, I took him to the emergency room. His heart was fine; he had stress-induced GERD (acid reflux). The ER doc said the band could figure out how to live without Hugo as he was, after all, a senior.

A few days later, Hugo decided. I sat next to him when he told the band directors he was quitting and why. It was tough. He felt he was letting down his section and the band. The band directors all too willingly seized on his fears and tried to guilt him into staying. Hugo politely, but firmly, stuck to his decision.

I’d like to say that’s the last time Hugo bit off more than he can chew, but it’s not. However, from that failure and the painful solution, Hugo understands himself better. He now recognizes sooner when his schedule starts spinning beyond his control, making dialing it down easier.

Embracing differences

Personal slogans that work for one person may not work for someone else. “Have a soft plan” is one I live by. When taking a trip, I plot out the journey, yet leave things open for serendipity. I don’t want to miss talking with an interesting person, taking a sublime hike, eating a fabulous meal, meandering in the funkiest antique shop because I’ve scheduled things so tightly there’s no room for chance encounters.

Ha! Did that make me sound cool or what? The flip side is I eschew details. Not only did I never properly pack a diaper bag, but also I rarely carried one. A diaper and a Ziploc of wipes easily fit inside a purse.

That meant I carried neither a cupboard of snacks nor a Santa sack of toys. A couple of times a baby of mine exploded beyond the boundaries of his diaper. That’s when I learned that carefully organized plastic grocery bags protect a car seat just fine. This go-with-the-flow approach keeps me calm, but can drive other people nuts.

As everyone knows, we recently enjoyed a solar eclipse here in Ohio. I put it on the calendar weeks earlier, lest we forget. No chance of that. A week before the event, it was the best nonpolitical news story to be had. Yet we never picked up eclipse glasses (and according to my Facebook feed, neither did anyone else I know).

That morning I showed Jules a website on how to build a camera obscura. He made three before the moon began soft-shoeing his way between Earth and her star. Hugo, who’d taken Lyra to speech therapy, called from the eclipse events at the Seiberling Nature Realm where we’d planned to meet, saying it was impossible to park there. So we stayed home, and soon decided we’d dodged a bullet.

Meanwhile, Lyra plays with the dogs

For not only was it a sunny day, but it also was doggedly hot. Going in and out of the air-conditioned house to grab icy drinks between views on our cardboard devices was refreshing. And with no rush, Max built one more camera obscura out of a 7-foot box. It required a small ladder to see through its peephole and provided a fantastic view.

So there you have some slogans that have helped me personally, as a parent and in general. In the months ahead I’ll share the one slogan that guides me when talking to my kids about the consequential subjects of money, sex and drugs.

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Titles, Travel and Time

“A rose by any other name would smell as sweet,” said Juliet, referring to her lover’s surname, “Montague,” his family bitter rivals with her own, the Capulets. And while she is right—a name alone cannot change the odor of a plant—I suspect far fewer noses would sniff something referred to as, say, skunkweed.

For writers, titles are excessively important. We are compelled to come up with something catchy in order to capture the attention of our precious and elusive targets: readers. For while there are high-paying jobs awaiting every exceptional computer engineer in the world, the most talented writers are, I’m afraid, the cliché dime a dozen.

I once, for example, gave an essay the shocking title “Die with Me,” which sounds like it might be a piece on group suicide. Indeed, it was a death wish–that the dying in my life allow me to attend and midwife their transition, as I was unable to do for my grandmother. She died alone, not wanting to bother anyone with the business of exiting this life.

Newspapers, it turns out, relieve a writer from the tedious work of titling.  There, titles are called headlines and copy editors come up with headlines that physically fit the printed page and, for the online version, contain words their search engine optimizers tell them are terrific bait for clicks. It’s like in the film industry where one production company creates a movie and an entirely different company creates the “Coming soon to a theater near you,” make-them-want-to-see-it trailer (I love trailers).

Some writers have a knack for writing clever titles. The task, however, makes me anxious and several times I have changed titles of essays posted online (where I can edit in perpetuity).

But, like many things, it’s easier to be the critic than the creator.

The headline for my first column in the best daily paper in Ohio, the Akron Beacon Journal, introduced me and my “unusual family.” Hmm, if we are unusual, I wondered, what does a typical family look like? Our family has two loving parents, which is not as standard as it once was, I concede. Five children fathered by two different men? Blended families were common way back in the 1970s when I was a girl. Two sons with learning disabilities and a daughter with a chromosomal abnormality? Given the improvement in diagnosing several disabilities in recent decades, that puts us in league with about half the families I know.

While my family history is not common knowledge and some facts are a bit salacious, I doubt any of it makes us unusual. In fact, after 8 months of rumination, the only “unusual family” I can think of is the fictional one in the novel Geek Love by Katherine Dunn (check it out).

Other than that, the headlines have been mostly fine and happily not my province. Until June. That’s when I wrote about taking our kids up to their grandparents in Northern Michigan for a few weeks. Most years, either Max or I drove the 450 miles each way in two days because we had to hurry back to our jobs. This year, for the first time in our relationship, we both work for ourselves and, therefore, were able to stay a few days longer because we can now work remotely. Sure, we walked the dogs on the beach a few times, but I would not call it a trip that included “relaxation by the lake” as the headline indicated.

Following up on the false equation of Time Away = Relaxation, the headline of my last column read: “Camp allowing family to relax, refresh.” To call our Buddhist family camp relaxing is like saying your Jewish neighbors relax each year at a kibbutz in Israel. Hauling gear and small children up and down a mountainside several times a day while sharing bathrooms with hundreds of other families is not relaxing. Nor is the six hours of work each camper has to do while there. That’s on top of the daily ½ hour of cleaning areas assigned by the class your child attends. It’s all good, but hardly relaxing.

Practicing kyudo archery for rites of practice at Karmê Chöling’s family camp

I’ve spent a good bit of time at Buddhist meditation centers over the years and the truth is people go a little crazy when there. Meditation divorces the mind from the pell-mell busyness we are all so accustomed to, if not addicted, in our modern lives. Quiet the mind and things arise that are easily avoided at home. Family camp is particularly crazy as kids never stop moving and, three days in, they begin melting down all over the mountain. The dates for camp used to change each summer until it was decided to always schedule it as late in the summer as possible. Why? So it occurs when the sun sets a little earlier, helping the kids to sleep more.

This year, I was in the dorm bathroom rather late one night when it was blessedly quiet. Only one other woman was there with her two small children. Her daughter, who was about six, fussed at getting her breathing treatment, after which, she resisted inhaling her Flonase. “Oh, I love Flonase,” I said, trying to distract the child, “It smells like lilacs!” Her weary mother, whose husband could not attend camp because of work, was still cajoling her daughter to cooperate when I left the bathroom. A few minutes later, she walked by me in the main house living room, carrying her son in her arms while her daughter followed behind, repeating chant-like, “I’m sorry you’re my mommy.”

Look for the fishies at the KCL pond

The next morning when the kids were in class, I ran into the mom and asked if I could hug her. Needing no more encouragement, she fell into my arms where I held her long and tight. When we released she looked like Roy Lichtenstein’s “Crying Girl,” tears pooling in her eyes and cascading down her face. “I know she’s not sorry I’m her mom, but I just wish I could be more patient with her.” Ah, what parent hasn’t said that out loud? The truth is, this woman was patient with her daughter. And frustrated. And deeply human. Little kids are tough, man.

Relaxing with young children is like the proverbial butterfly that cannot be chased. I relax best at dinners with my family. But vacations? Never. Sitting with a book on the beach makes me feel sweating and itchy just thinking about it.

I have no interest in climbing Mount Everest, but I’ve climbed a mountain in Michoacán, Mexico at dawn one winter’s day to see the monarch butterflies awaken and flood the air.

For several days, I walked alone on the streets of Rome when I was seven-months pregnant with Jules, finding ancient, medieval and Renaissance structures around every, and I mean every, corner.

Ten summers ago, when I was still the only one with a driver’s license, I took my three boys on a cross-country road trip in my 5-speed Matrix. For many reasons, that journey has become a pivotal memory for all four of us. I packed carrots, apples, cheese sticks, bread, peanut butter, jelly, Nutella, and Red Bull. My pact with the boys was if we could spend less than $20 at restaurants each day during the week, we’d splurge on weekends at a fancy dinner. They were game and we all lost weight, even Jules who was air-fern thin before we left Akron.

Three summers ago, I joined my eldest son, Claude, in Spain after he’d studied in Granada for a term. Madrid-Toledo-Valencia-Barcelona-Bilboa-Madrid, we circled that lovely Iberian country seeking art and tapas. Gracious Spaniards, delicious food (shout out to Marta Diaz Valderas at Casa Aurelio near the cathedral in Toledo!), fabulous museums and architecture greeted us at each stop along the way. The entire trip, including my airfare and all our trains, cost $3,000.

Life is like a bull I want to grab by the horns, throw down, cut open, drink the pulsing blood from its veins and the marrow from the bones I crack open. For even if I am the healthiest 51-year-old alive, and also the luckiest, that still only leaves me with 40 more good years of life.

Relaxing vacations are for those who watch life pass by. I will not wait for death because I know he waits for me.

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Raising Dogs and Kids: It’s more alike than different.

This article first appeared in the Akron Beacon Journal on July2, 2017

Raising children is remarkably similar to raising dogs. I’m reminded of this anew, having taken in two puppies in the past year.

For more than 30 years, I have had a series of German shepherd and Shetland sheepdog pairs. But when Greta, our last German shepherd, died seven years ago, instead of replacing her in kind, I took in a second Sheltie, Lily.

Last summer Hoover, the older Sheltie died, at age 15. Everyone who met him remarked that Hoover really liked him or her. Never pesky, he would lie down next to guests, keeping polite company. “Yes, he sure does,” I would respond, without mentioning he liked everyone.

Hoover’s temperament was no fluke. Jules and I drove to Montreal last July for another Sheltie: Angus, a tricolor like Hoover, bred by the same woman. Days after we returned home, Max, whose birthday is in September, began calling Angus his “early birthday present” while I call him my “favorite son.”

Lily, Angus and 4-mo-old Dorothy

Then in May, I brought home Dorothy, a black German shepherd puppy. Perhaps it’s my age. Many middle-aged women often become cat ladies or dog ladies, adopting far more animals than their children can understand. I like cats and have always had them, but I am a dog lady.

With Lily, Angus and Dorothy, we have, for the first time, three dogs. Our pack.

Here’s how I raise puppies and children:

Babies cannot be naughty, nor can puppies 8 weeks and younger.

Dog mothers know this and tend to all their puppies’ needs for the first months of life.

In utero, babies know no hunger, only warmth and the voice of their mother. When they cry, it’s for a reason. There are many ways to successfully raise children, but on crying babies, I am directive: pick them up. Crying is the only way babies have to communicate. (I’m not talking about colicky babies who cry for hours on end, requiring a parent to put them down and walk away for sanity’s sake.)

Begin training early; do not make excuses for age. And remember, consistency pays off.

The day I bring a puppy home, we begin work on the following commands: “sit,” “come,” and most importantly, “go potty.” They must always sit before receiving a treat and must take all treats gently from the hand.

As soon as they begin to talk, I teach my children manners. “Yes, please” or “No, thank you” is what they say when answering a question. This not only makes life more pleasant, it opens doors for them later on.

Be emotionally available.

Only good can come from doting on a well-behaved dog. My pups sleep in crates until they are fully housebroken. After that, I am happy to have them sleep near us.

Children whose emotional needs are met when young are generally confident and independent when older. If you let your child crawl into your bed after a bad dream, they are less likely to grow into a disaffected teenager.

Praise whenever you can.

Tell dogs they are good all the time, not just when they follow commands. Praise allowed dogs to remain perfectly still in an MRI machine for 13 minutes during a research experiment.

With children, however, praise behavior, not the child. For example, “You worked hard on your homework” rather than “You are so smart.” (See “The Inverse Power of Praise” by Po Bronson.)

Show children you love them often, not just when they are successful. Once or twice a year, I take each of my kids to lunch at a restaurant on a school day. The older boys now wax nostalgic over those dates.

You got to move it, move it.

Puppy brains and child brains work best when the bodies housing them are regularly active. I take my dogs on 2- to 3-mile walks most days. On the days I cannot, the puppies chew what they shouldn’t, have accidents, and won’t leave the other animals alone.

Likewise, I cringe when I hear of classrooms in elementary schools losing recess because the kids have been too loud, didn’t listen, or didn’t stay in their seats. Unlike John Rosemond, the syndicated parenting columnist, I do believe ADD and ADHD are real, but that it is mostly situational. Kids who spend too much time in front of screens and not enough time outdoors will struggle with attention and self-control.

If you can, have more than one dog and more than one child.

Both species will be happier. The sibling relationship is the longest relationship of a person’s life. While not all siblings remain close, when they do it is invaluable.

Not all dogs are the same. Not all kids are the same.

Shelties are ridiculously easy to train because they innately aim to please. German shepherds, on the other hand, are many wonderful things but, like a clever child, repeatedly check to see if you are truly in charge.

Likewise, if I had stopped after my first son, Claude, I would have thought myself God’s gift to parenting. Then I had Hugo, who weighed in at 10 pounds with eyes swollen shut after a difficult birth and was then colicky for four months. From Day 1 he has challenged my ability to be the parent he needs.

Respect those in your care.

I do not insult my dogs by teaching them tricks like “shake” or “roll over.” And they do not insult themselves by begging. As with my children, I raise dogs whose company is enjoyable. Why, I wonder, would anyone want it otherwise?

Embrace leadership.

I suppose it’s hard for some people to be in charge of their children and pets, whether from a misguided sense of fairness or a retiring personality. But everyone has boundaries and if the parent does not clearly set them, the child will push to find them. That’s when parents lose control and begin yelling, or worse.

Small children and puppies do best with parents who are benevolent dictators. For the young, it’s stressful when life is not predictable. Later, when the children are mature, parents can become presidents of democracies whose citizens effectively self-advocate. And when they are adults, if you have earned their trust and respect, your children will regard you as an adviser and confidant.

And that is the brass ring of parenting.

 

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Busting the Myths on Down Syndrome

This column was published on Ohio.com on May 6, 2017. One column only scratches the surface on the topic of life with Down syndrome in the United States in 2017. For more articles, videos and profiles of adults with Down syndrome, please refer to my public Facebook page, “Whoopsie Piggle,” or my blog of the same name on WordPress.

 

 

Two women walk into two separate pediatric medical genetics offices. Both are told by genetics counselors that they are carrying fetuses with Down syndrome and not to expect their children to function beyond the abilities of a 6-year-old child. Ever.

When and where did this happen? The United States in the 1950s? A former Soviet bloc country in the present day?

No. This happened in 2017 at University Hospitals and the Cleveland Clinic. No joke.

Every September since our daughter Lyra was born, I’ve spoken to first-year medical students at Case Western Reserve University. Too early into their medical educations to know what medical specialty they will ultimately practice, these students are the ideal audience.

Why? Because health care professionals in all specialties need to hear this: People with Down syndrome are fully human and today lead lives little different than the students themselves.

One day those students may be the gatekeepers for who receives care, or who even exists. Therefore, unlike far too many of today’s health care professionals, they need to give information based not on assumptions or on outdated and false stereotypes, but on facts. After all, medicine is a science, and science is founded on the pursuit of facts.

So let’s go over some facts:

• Most people with Down syndrome (DS) are born with a mild to moderate intellectual disability, according to the National Down Syndrome Society, which is to say most will function at levels considerably higher than that of a 6-year-old.

• People with Down syndrome have been found in clinical studies to have significant adaptive skills, allowing them to function at levels higher than expected based upon IQ alone.

• Increasingly, children with Down syndrome go to school, graduate from high school and go on to post-secondary education, including college. Many will drive, get jobs, live independently and marry.

In a study in which people with Down syndrome over age 12 were asked to weigh in, “nearly 99 percent of people with DS indicated that they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they look. Nearly 99 percent of people with DS expressed love for their families, and 97 percent liked their brothers and sisters. While 86 percent of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations.”

And what of the families? More facts:

• The incidence of divorce is lower in families with a child who has Down syndrome than in families who have children with other disabilities and, get this, families whose children are all nondisabled, according to the American Association on Intellectual and Developmental Disabilities.

• In a study of older siblings of a person with Down syndrome, 94 percent expressed feelings of pride for their sibling with DS, and 88 percent cited that they are better people for having a sibling with DS. I venture it’d be hard to replicate those numbers among families with just typical children.

The “Down syndrome advantage” is a phrase that has been coined in light of these and many similar studies. And from my own nonscientific research, confessions of a grandchild with DS being their grandparents’ favorite is so common, it’s almost unanimous.

Yes, challenges exist for parents raising a child with Down syndrome. About half of babies born with DS have congenital heart defects, though most are corrected completely with surgery. Also, most children with DS are born with low muscle tone, which not only results in delayed gross motor skills (sitting up, crawling, walking) and fine motor skills (eating with utensils, self-dressing, writing), it also impacts speech. Our daughter Lyra has been in speech therapy most of her life and may well continue throughout her life.

But there has never been a better time to be born with Down syndrome, at least in most parts of the United States and many other countries, though not all.

So why do so many medical providers persist in sharing horridly inaccurate opinions, as opposed to the facts, as shown in scientific research, when delivering a diagnosis of Down syndrome? I believe this is mostly a generational issue. I cannot recall meeting or hearing of a health care professional under age 40 who is negatively biased towards people with DS.

In fact, among women receiving a prenatal diagnosis of Down syndrome, the number who choose to terminate has decreased slightly in recent years, according to a study published in the journal Prenatal Diagnosis. The presumption is that today’s young women, unlike my generation, grew up seeing people with DS on television, as well as knowing people with DS in their schools and communities. Firsthand exposure to people with DS is the antidote to the biased notion that people in this population cannot function beyond the level of a 6-year-old.

The summer Lyra turned 2, we went to a family-friendly party in a sprawling yard. I had a fabulous conversation with a smart and funny woman my age. Nearby, Lyra was hustling about in her newly perfected bear walk.

“She’s so cute, how she crawls on her hands and feet,” said the woman.

“Yeah, it takes them much longer to crawl and walk with Down syndrome.”

“Wait, your daughter has Down syndrome?”

“Oh, yes,” I said.

“You are so much stronger than I could have been,” the woman said and I disagreed with her. “No,” she continued, “I’m telling you that you are stronger than I was. In my late 30s, I was still single and had IVF to get pregnant. When I was pretty far along, they told me the baby had Down syndrome and gave me two days to decide. I couldn’t do it. I would have been alone, I … I didn’t do it.”

“I have no judgment,” I said, knowing this woman made the best decision she could with the information she was given. I then watched the features on her face rearrange themselves, her eyes going from narrowed and intense to wide and open.

“But I see your daughter and,” she paused, “it makes me wonder.”

I gave her my card, but not surprisingly, I never heard from her. In less than two minutes, I watched a woman think she could not possibly have raised a child with Down syndrome to wondering deeply, perhaps painfully, what her life might really have been like with a child who had Down syndrome. All the wonderful possibilities, along with manageable challenges, that her health care professionals neglected to tell her.

Contact Holly Christensen at whoopsiepiggle@gmail.com.

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A Few Points on Parenting

Published 4/8/17 on Ohio.com

A friend only a few years into her adventures as a mom posted on my Facebook wall: “You need to write a parenting manual for me.”

I think about parenting a lot and have for a long time. So I quickly responded:

1. You will screw up but your kids will always give you a do-over.

2. Show up. Be present in heart and body whenever you can. Don’t beat yourself up when you can’t.

3. Push your kids to be the best they can be and then support them in their efforts.

4. Read NurtureShock, by Po Bronson and Ashley Merryman.

5. Remember, nobody will ever know you as well as your kids do. Nor will anyone else love you as unconditionally. Remember this especially when they are acting ugly and/or mad at you.

6. Make your parenting decisions thinking about how your child will look back at age 20 and wish you’d parented.

7. Love them knowing it’s the best investment you’ll ever make.

8. Responsibility breeds contentment.

9. It’s not your job to make your kids happy. That’s their job.

Am I an expert? Hardly. I am like a research scientist who collects data and applies the findings in my own lab with plenty of trial and error. Still, the results have been largely successful, which is both a pleasure and a relief. Relief because children learn best from what has been modeled for them.

My parents met at a freshman-sophomore mixer at Chicago Teachers College in the mid-’60s. I was born the day after my mother turned 19. Being a teen when giving birth does not guarantee poor parenting, but in my case, neither of my biological parents ever committed themselves to the task. (And if this sounds petulant, let me be clear: their neglect was far and away better than their attention, which was often violent in word and deed.)

For my mother, I was an inconvenience she would hand off to others frequently but never permanently, because that would make her look, well, like a bad mother.

Luckily they were not the only adults in my life. Even though years of my childhood passed without seeing them, my father’s mother and his second wife immediately and always claimed me. Neither was perfect (who is? see point 1), but my grandmother loved me like the daughter she never had, which is to say unconditionally, no matter what I did (oh, the list is long).

And my stepmother, who divorced my father in the early ’90s, and her husband are the grandparents my three big boys grew up with and adore (see point 2). None of us can recall when they realized Grandma and Gramps, married 22 years this month, are not biologically related to us.

Parenting is work just about anyone can get. But parenting well is a humbling exercise in leadership (see points 6 and 9) that can never be completely mastered. For each day is the first day of having a family the way it is. And while that may be hard to observe every 24 hours, compare years and it becomes clear:

Until this year, I had never had a child with a college degree who was earnestly, if not anxiously, trying to course his adult life.

Until two years ago, I had not realized my recipe for college acceptance and funding did not apply to my second son the way it had for my first son and me (study your butt off in all subjects and it will work out). My second son works hard at one thing: music (see point 3). He is also far more talented than either he or I knew when he began auditioning for schools.

Until months after his second birthday, my third son did not talk. He remains a quiet observer, which is how he has amassed a stunning amount of knowledge on all inhabitants of the planet Earth for one so young (16). In this house of creatives, I did not anticipate a biologist, particularly one who, like a tenured professor, can calmly give presentations to large groups of people.

Until my fourth son was a toddler, I had never experienced a child of mine being a daddy’s boy. The first three were barnacled to me when they were little, but then again, they did not have Max until they were older.

And until my daughter came into my life, I did not know I could love a child so hard I would try to use all my skills, and develop new ones, to change the world for her.

The pain of being an unwanted child bleeds like a wound that looks healed over until you pick at the scar. How I might have turned out had my parents wanted me, I cannot know. But it is from this wound that I chose to study parenting even before I knew I would have children of my own. And parenting my children with intention has cauterized, for the most part, my injuries (see points 5 and 7).

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Learning About Lyra: Four Years into Our Journey

When Lyra was a few months old, I first wrote an essay titled, “Learning About Lyra.”  Now, more than four years later, we have traveled far down the road of our journey with our daughter. This short piece was published in the Akron Beacon Journal on March 12, 2017 and can be found on Ohio.com. Please feel free to share it, especially with anyone who has learned their baby has Down syndrome.

“Is there a vagina?” I asked the midwife the moment I pushed a baby out of my womb for the final time.

My fifth child is my first daughter. Or so the doctors had told me during an ultrasound 18 weeks into my pregnancy. But reading ultrasounds is a subjective art and there are no guarantees. We knew this.

Pregnant at 46, I refused amniocentesis because of the small chance the procedure could cause me to lose the baby. The blood work and ultrasounds in the middle of my pregnancy did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and “beautiful is better than good.”

Bluish and slippery when the midwife handed her to me, the baby energetically bleated dissatisfaction. With eyes squeezed shut, she easily began to suckle my breast. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect.

When she finally opened her eyes, I mentioned they looked “Downsy.” Then I noticed the ghostly pallor of her pupils and the bulk of skin on her neck. The midwife, who had listened to Lyra’s heart the moment she was born, said, “I’ll fully examine the baby in a few minutes, just hold and nurse her for now.”

In the middle of our bed, Max and my son Jules huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.

Our daughter has Down syndrome. And she was blind. The murky white of her pupils was due to bilateral cataracts. When she was born, I knew nothing about Down syndrome; what little I thought I knew was just outmoded and inaccurate stereotypes. Nor did I know anything about raising a child with visual impairment.

On Lyra’s second day of life, we met with a genetic therapist. She took her time answering our questions, which was the start of our education of what it really means to have Down syndrome today in the United States. It is radically different from when Max and I were growing up. For example: When I graduated from high school in 1983, the life expectancy for someone with DS was 25. Now it is 60 and increasing.

The weeks after Lyra’s birth were chock-full of appointments, verifying she had Down syndrome (DS), that she had no life-threatening conditions (about half of babies born with DS have heart defects, most of which can be fixed) and, most urgently, taking care of her cataracts.

At 6 and 7 weeks of age, Lyra’s natural lenses were removed, one surgery at a time, at Akron Children’s Hospital. Because implants are not recommended in children so young, Lyra wore contact lenses until she was 3, when she switched to glasses.

At 3 months, Lyra weighed 9 pounds 12 ounces, less than two of my boys weighed at birth. She didn’t reach her baby milestones at the same age as her brothers due to hypotonia, or low muscle tone, found in nearly all babies with Down syndrome. Yet she remained in the range of normal development compared to typical babies.

Accomplishing this was due in part to participating in Akron Children’s Hospital’s physical, occupational and speech therapies for over two years. We became so close to her therapists that I had mixed feelings when Lyra no longer needed their services. I was thrilled for her success but sad to leave our team.

The truth is, nobody knows what the journey will be with any child. I have two sons with severe dyslexia who required significant interventions. I have another son who turns to gold anything he sets his mind to — music, sports, academics and visual art. Yet it is this ridiculously talented son who regularly commandeers immense amounts of my attention and energy. Watching not only who they become but also how similar and how different each child is from the others is one of the joys of raising a large family.

Today Lyra is 4 and Max and I both feel like we have graduate degrees in Down syndrome studies. But more importantly, we now know our daughter. She’s a talkative extrovert with a chipper personality, unless you try to make her do something she does not want to do. Then she’ll fight you with the might and cunning of an oiled otter. She loves music and, if she likes you, she’ll ask for your hand so you can sing and dance Ring Around the Rosie with her.

Did we grieve over Lyra’s diagnoses? Max immediately and steadfastly saw her as perfect. At first, however, I felt robbed of doing the things I imagined I’d do with a daughter. But I was wrong. Lyra is the daughter I always wanted who does everything any daughter could do, just sometimes at a slower pace.

In future columns, I will further introduce Lyra, and others who shatter the perception that a life with DS is a limited one.

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Where in the World Is Whoopsie Piggle?

When people are ready to, they change. They never do it before then, and sometimes they die before they get around to it. You can’t make them change if they don’t want to, just like when they do want to, you can’t stop them. ~Andy Warhol

Max was ready to change. That had long been clear. Even before he moved to Akron, which made his daily commute twice as long as it had been, he wanted to work elsewhere. Like many major decisions, at first all he knew was he wanted something different, something that let him do the parts of his work that he loved and allowed him to do the other parts of his life he also loved. The process of figuring out just what that would look like took time.

He looked for jobs in Akron, sporadically applying to available positions he found interesting, like in-house counsel for Sterling Jewelers and Akron Public Schools. After a year of casual searching, Max became serious and set up appointments to meet with partners at numerous Akron law firms. Roughly 18 months after declaring he wanted to work in Akron, Max suggested hanging up his own shingle and becoming a solo practitioner. The first time he said it, he acted like he was joking. A few weeks later he said it again, and then with increasing frequency until it was no longer a suggestion but a moment of self-clarity: “I am not just eager to open my own practice, it excites me! This is what I need to do.”

Being miserable at work is not contained by the hours on the time clock. Your misery hops in your satchel and sits in the passenger seat on the drive home, it waltzes into your house beaming displeasure when you do the things you enjoy with the people you love because your job misery owns you, never lets you forget you should be working at home instead of relaxing, constantly reminding you that soon you must leave and take your misery back to your place of employment where you will be held prisoner for yet another day.

I was open to anything.

In August of 2015, Max left his corporate law firm and went to work for Max W. Thomas, LLC. Since then, even when things are at their most difficult, he has never said, “I hate my job.” When he left his misery in an office tower in downtown Cleveland for good, an unfamiliar contentment replaced the space it had occupied.

But let’s get real: Many days have felt like the last scene in Thelma and Louise. Our household income plummeted, we have lived largely on Max’s retirement savings, which means he’s had enormous tax bills. We have navigated insurance without an employer providing coverage, which for us is not as simple as finding an affordable plan for catastrophic care when our child with special needs is a frequent user of health care. A few months after Max left his corporate job, my blood pressure shot up to 168/110 and my doctor prescribed lisinopril. A year later, she doubled my dosage as my numbers had soared yet again.

2016

A doozy of a year for many people. For me it meant helping Max in his legal practice (I may be an unofficial paralegal before I die), continuing to proofread for the clients I have had now for several years, ramping up my hours at World Market from 10 to 24. And then there are the kids. We do not make enough money to hire a nanny, so we juggle and deeply rely on our Google calendar to make sure we are all where we need to be when we need to be there.

Something had to give and it was my writing. There just wasn’t time to write even as life was handing me great new material. Instead, I revisited previously written pieces, editing and submitting them to various publications. This fall, Max suggested we work to pull together my book on Down syndrome and e-publish it because it takes less time to edit existing essays than start from scratch.

The struggle is real, yet we know we are on the right path. After a few months of getting his office organized—he could easily teach a continuing legal education course on starting up a solo practice and how to find the right equipment and services at nominal cost—his practice picked up and has steadily increased most months.

The fact that I could not write even a few sentences in my daily journal was frustrating and, honestly, a full-time career in retail would for me be a tag-you’re-it job in terms of misery. But I always believed it to be a temporary state of affairs. And so it was.

Serendipity or providence, whatever the case may be, I was approached this fall by the Akron Beacon Journal to write a column on parenting. My first column will appear this Sunday, January 29, in the Lifestyle section. For readers who do not live in Akron, the column will also be posted on Ohio.com and I will share it on Whoopsie Piggle’s Facebook page. They will be different than the essays here because I am limited to approximately 750 words. But the content will be what you expect from Whoopsie Piggle.

Beyond the topsy-turvy of starting a business, there has been much to write about this past year and I hope to make up for lost time in my column. I plan to write additional essays on this site that go beyond the scope of my column (What a surreal election and new president, huh?).

Having an audience for Whoopsie Piggle has kept me writing for the better part of four years, with 2016 being the glaring exception. The feedback I have gotten from so many of you, both online and in-person, means more than you can probably imagine (though I hope my former professor, Tom Dukes, knows how much his support has meant to me). I invite you to read my column and, please, share it with others.

Thank you and see you in the funny pages!

Meanwhile, here are some highlights from 2016:

 

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Lyra’s Eyes at Three

Whoopsie Piggle can be found on “Down syndrome Blogs,” a site that aggregates Down syndrome blogs by category. One of the categories where Whoopsie Piggle is listed is “Dual Diagnosis” because Lyra was born with congenital cataracts in both of her eyes. Since her birth, the idea of my child being blind has been far more worrisome for me than her diagnosis of Down syndrome and while I hope this essay appeals to a variety of readers, I most wish to share what we have learned with parents of children who have both Down syndrome and vision impairment issues. 

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This past fall I finally gave up. And when I did, my relief surprised me.

“You know, even in kids without Down syndrome, somewhere between 18 months and four years old they typically stop tolerating contacts,” said Lyra’s ophthalmologist more than a year earlier when we started having problems keeping contacts in Lyra’s eyes. When she was a baby the same doctor had said that he would prefer to keep Lyra in contacts for as long as she tolerated them. The word “tolerate” when used in a medical setting sounds like a biological event over which there is little control, such as when organ transplants are tolerated or rejected by the recipient’s body. But in the case of contact lenses “tolerate” is a euphemism referring to behavior.

Lyra began wearing contact lenses when she was six weeks old. Because she was born with cataracts in both eyes, her natural lenses were surgically removed. Unlike when an adult has cataract surgery, however, synthetic lenses were not swapped in where the natural lenses had been removed. That’s because Lyra’s eyes continued to grow for at least another year after her surgeries. When her eyes were done growing, transplants were theoretically an option, which one of the younger doctors in the ophthalmology practice suggested.

“Young doctors love to operate,” said Lyra’s surgeon, who is the head of the practice, “but when you get older you recognize it is sometimes better to wait. Now if she comes to me at eighteen and says she wants implants, I’ll do them. But if she can do fine with contacts, it’s better to wait.” I agree for three important reasons: First of all, intraocular transplant surgeries in children under the age of five have far more complications, resulting in additional eye surgeries up to 72% of the time. Secondly, accurately determining what strength to give a surgically implanted lens on a child who is preliterate and unable to perform the typical acuity tests (Which one is clearer? A or B?) is never ideal, and, finally, I believe by the time Lyra is eighteen the field of intraocular lens transplantation will only have improved, perhaps significantly.

But back to tolerating contacts. The first two years Lyra wore them, I occasionally found one of her eyes nakedly free of any contact. Usually when this happened, the lens was ready to be replaced, which we did with the staff at the ophthalmologist’s office every three to four months. A new lens is shiny and clear, but over time protein accumulates, dulling the surface. I’m sure as they get dirtier, the contacts are less comfortable and I was not surprised when Lyra rubbed them out from time to time. This started happening more frequently after Lyra’s second birthday. Then this past spring, a few months before Lyra turned three, the pollen count rocketed higher than in most years. Lyra and everyone else in the house became sneezing snot buckets. Contacts disappeared weekly and at roughly $150 per lens, replacing them is not something to sneeze at. “It’s time,” said the doctor, “she’s spending too much time wearing only one lens and it’s too stressful putting new ones in this often.”

Two things in Lyra’s life have never been easy and have only gotten harder as she’s become bigger and stronger: quarterly blood draws to monitor her thyroid levels and contact lens changes. When she was a baby, I sat with Lyra on top of my legs with her head on my knees as one nurse put the speculum in her eye while the other one removed her old lens and put in a new one. The speculum was always necessary because Lyra clamped her little eyelids closed so tightly it was impossible to keep them open using fingers alone. When she was larger, I held Lyra sideways in my lap while one nurse held her head, another operated the speculum and a fourth nurse conducted the lens change. Always, Lyra screamed herself hoarse and became slippery with sweat. After doing this weekly for a month I lost all determination to keep her in contacts.

“Many kids love glasses and stay in them for years,” said the doctor when they removed her final contact lens. Even though there was only one lens to remove, afterwards Lyra remained upset and refused to wear her new glasses in the doctor’s office, wanting nobody and nothing near her eyes. I tried again later that day when we were home and she promptly pulled them off her head and flung them across the room. Now what? I fretted. She can’t go around with absolutely no correction. Her prescription is +19 in one eye and +20 in the other, qualifying her as legally blind (for comparison, I am quite nearsighted and my prescription is -3.75 and -4). I contacted the vision impairment specialist who used to come to our house with Lyra’s county caseworker. She sent me a list of tips for getting kids to wear their glasses, which assumed you could get them on the kid in the first place. I went to bed that night believing we might need implant surgery after all.

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Lyra loves her glasses and kitties. This is inarguably her favorite shirt.

The next morning when I got up and went to the kitchen for coffee, Max was sitting at the table. “Look at Lyra,” he said. Because she sits at the end of the table, her back was toward me when I entered the kitchen. I came around and there she was, wearing her glasses while eating her breakfast. With the exception of the following day when she hid them in a pot inside the oven of her toy kitchen, Lyra has willingly worn her glasses ever since. In fact, when she gets up in the morning she often says, “Hi! I want axes.” Which is how she pronounces “glasses.”

Why was I so resistant to abandon contact lenses? What I told myself was that Lyra would not be able to see as well in glasses as she could in contacts. For anyone who has worn both glasses and contact lenses, it is often the case that contacts give a more precise, if not significant, correction. In part because the lens is directly on the eye and not a few centimeters away. But it was Max who hit on the larger reason. Max, who took Lyra’s diagnoses in stride since the very beginning and never grieved over Lyra’s Down syndrome because, as he told me, he just loves her so much as she is. That hasn’t changed, but with fierce love comes the desire to protect. “I wish she didn’t have to wear glasses because it’s one more thing that identifies her as different,” he said to me about a week after Lyra switched to glasses.

Though variation is substantial, people with Down syndrome, unlike other conditions, bear identifiable physical features. Chief among them are almond-shaped eyes due to epicanthal folds of the upper eyelids and flatter facial profiles. In the morning when she sits on my dresser in front of the mirror where I brush her long blonde hair, Lyra looks glamorous. But she cannot work with hair in her face and she cannot see without her glasses. Once her hair is smoothly secured in colorful elastic bands, I place her glasses over her head and around her neck like a necklace, then pull her hair over the safety band that connects the stems. Quickly Lyra grabs the frames and perfectly positions them on her face. “Hi!” she then says every time, looking me in the eyes.

Her glasses are so thick they feel almost like marbles when I rub them clean with soap and water, as I do many times a day. In contact lenses, Lyra often squinted, making her eyes look small. The magnification of her glasses is so powerful her eyes appear owlishly big, drawing attention to her face. Her vision impairment is now as patently obvious as her Down syndrome. More than before, in public people comment on how cute Lyra is. Like three-year-old boys in ties and sports coats, glasses on such a small girl looks endearingly adult. But what happens when Lyra is a teenager and, later, a woman? I have long felt more at ease with Lyra having Down syndrome than I do with her vision issues. And here’s why–Lyra is healthy, a social extrovert and very bright. Understanding that Down syndrome effects cognition, at three-and-a-half years old Lyra is no longer an enigma. She will do well in life with the right support, which we give her and will do so for as long as we can. Beyond us, Lyra is blessed with four adoring brothers whom I have no doubt will look out for their sister when Max and I are dead. (It happens and we don’t pussyfoot around in talking about it.) But my daughter as someone who is legally blind? What that means long term is not so clear.

In Ohio, services are provided at the home by the state, through the county of residence, until a child is three years old. Then the child is eligible for public preschool and it is there that services continue. Lyra is fortunate to have as her classroom teacher a vision impairment specialist. We have long heard that children with Down syndrome have strong visual memory but after raising two kids with severe dyslexia, I was not expecting Lyra to read before five as do many other children with Down syndrome, including our pediatrician’s daughter. Yet today Lyra recognizes and verbally identifies almost the entire alphabet, numbers one through nine, and at least five colors. For now, the letters and numbers she looks at are quite large, certainly not as small as the print in a typical children’s book, which leads to what comes next. When we recently saw Lyra’s ophthalmologist for the first time since her last contact lens was removed he was thrilled with her vision and said, “Somewhere between 12 and 18 months from now we will make the switch to bifocals. I want to wait a while because it’s a difficult transition, the kids fall a lot and it takes a while.” On the other hand, he also told me it would take two to three weeks for Lyra to adjust to glasses and that only took 24 hours.

Meanwhile, Lyra’s teacher is exposing her to braille and signed her up with a non-profit that sends us braille books every few months. The ones that are typical toddler books with clear braille stickers overlaid upon the text we keep at home. Others are simply white 8.5 x 11 pages covered with bumpy dots. We put those in Lyra’s backpack and send them to her teacher.

IMG_3333Like so many changes resisted in life due to fear of the unknown, I wish we had switched to glasses sooner than we did. We would have saved Lyra several traumatic contact lens changes. She still drops to the ground in an unfamiliar setting if she is unable to discern the topography of the ground or floor but otherwise seems to see as well as most other three year olds. An added benefit is her glasses have transition lenses, meaning they get dark when exposed to sunlight. In contacts, I could never get Lyra to “tolerate” sunglasses. Now sunglasses are just part of the package and she looks pretty cool.

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Mid-century Mark

static2.politico

“You belong to AARP?” I asked my father twenty years ago when he mentioned a discount he’d received due to his membership. A man who never refuses assistance, I figured he had pulled one over on the retired people’s lobby. But that wasn’t the case.

“Yep. You only have to be fifty to join,” he said. While fifty is still the official age of enrollment, AARP is happy to confer senior status as of January 1 of the year someone turns fifty. Born at the end of 1965, I had just turned forty-nine when I received my first membership card last winter allowing not only me but also my partner to become members based solely upon my age. Just one more benefit I can offer to Max as an older woman.

When I was in the fifth or sixth grade, the staff and faculty of my elementary school went all out to celebrate the fiftieth birthday of our principal, Mr. Tomlinson. A sturdy man who spoke only when necessary and never needed to smile, it was hard to imagine his younger self. In his defense, our regular visits together in his office were not to congratulate me for any achievements. Half a century, that is really old I thought looking at him from across his desk. A classmate who occasionally joined me in Mr. Tomlinson’s office wrote in his birthday greeting, “Fifty looked a lot older when we were younger!” And by younger, fifty looked pretty old just ten years ago.

“When you are in your forties, your children are older but you still have your looks,” a much older friend told me when I was pregnant with my first child in my late twenties. She also had aphorisms for the other decades of a woman’s life, but I only remember the one. When my forties arrived, I found some truth to her words as there was a freedom in having older children while still relatively young myself. That is until I had my fourth and fifth children at ages forty-four and forty-six. People tell me my littlest children will keep me young, but more than once have I thought, Whew, Im too old for this, these two could be my grandkids in which case I could send them home to their parents. Fortunately their father enjoys the routine of getting the two Littles, as I call them, ready for bed each and every night.

Doll HandWhile I may have looked much the same as I had the previous decade, when I turned forty, I began to notice wrinkles in places I never imagined. Like the tops of my wrists where lines appeared seemingly overnight giving my hands a doll-like quality. You know, the kind that a child can turn in the plastic socket. Or pull off altogether revealing a small ball at the end of the palm and the hollowness of the entire arm. But it’s not so gruesome as I once imagined, this aging of the body. On most days, it feels like puberty only slower, watching what you assumed was the way you would always look slowly shift and change.  And, just like puberty, it includes acne. For years, I have noted women in their fifties who look fabulous not because they look young, but because they no longer seem invested in pleasing anyone but themselves with their appearance. Carefree short hair, fun earrings and bold eyeglasses on faces both weathered and softened by the elements and time. Today my hair is short, my earrings are fun and my glasses (when I can find them) are colorful. It is not as though I am unconcerned with my appearance. I still love make-up, jewelry and more shoes, boots and coats than any one person has need to own. But I am content with my physical form, even as it is softer in substance, rougher in texture and more lined than it once was.

Like seeing numerous cars the same color as your new vehicle, as my forties wound down I noticed these lists written over the years by people turning 50. Sprinkled with humor, the thrust is Hey, I’m wiser at 50 than I was at twenty. Or thirty. Or even forty. Last spring I read an article in the Atlantic that defined those possessing wisdom as “satisfied, calm and grateful” and that studies show this is more commonly found in older people because they are less reactive to negative stimuli. But beyond learning to regulate emotions, at around the age of 50 many people begin to have more realistic expectations of themselves than they did, say, in their 20s when life looks for many as though it will go on indefinitely. As expectations realign with reality, disappointments in life are understandably fewer.

I don’t have a big list of things I’ve learned after trotting around the earth for half a century. In fact, pretty much all the elements of most of those lists was best summed up by Andy Warhol in a single quote:

When people are ready to, they change. They never do it before then, and sometimes they die before they get around to it. You can’t make them change if they don’t want to, just like when they do want to, you can’t stop them.

I have been both the person futilely trying to change others and the one who has changed in spite of great resistance from the very people I previously had tried to change. At fifty, the friendships (and acquaintances) I have with people I have known from every decade of my life, going back to elementary school, constitute the sauce of a rich life. But just as importantly, I learned in the last decade to let go of relationships that were either toxic or continuously draining including a spouse, two parents, and a number of people I once considered friends. I wish none of them ill, but like a house with termites, no long-term good can be expected in keeping such company.

I am a fifty-year-old mother of five children and therein lies the other truth I have come to know: You are only as happy as your least happy child. Nineteen years and one week before my fiftieth birthday, I gave birth to my second child and since then there has been a round-robin game of who sits in the hot seat of maternal worry. At this moment, and for the first time since my eldest child began kindergarten, all of my children are flourishing. Claude, once diagnosed with severe dyslexia, has spent four successful years at the University of Michigan and will graduate this spring. Hugo, who might never have gone to college given his recalcitrant procrastination and misplaced priorities, is thriving at one of the best music programs in the nation. Jules, my other dyslexic, has taken to high school and its workload with aplomb. Leif, whose fiery temper gave his senior citizen parents a run for their money for three long (long, long) years, began kindergarten at the local public school this fall and *presto* became a boy who now delights in most things and happily goes to bed each night at eight o’clock. And then there is our Lyra, the bright star of our family show, who also began public school this fall and has had an explosion of speech and skills in the past three months. Best of all, my children have concrete, loving relationships with one another, which includes disagreements, misunderstandings and arguments. But they always work through it because there is, for now, nobody else with whom they have a closer relationship. Which is what I wanted for my grown children from that first moment I was a mother of more than one child.

All those years of worrying now seem unnecessary. Sure, it’s easy now to see that everything worked out beautifully. Yet I do not doubt future episodes of difficulties will befall my children, along with my attendant concern, for in every life a little rain must fall. Until I was in my mid-twenties, I said I would never have children. Nobody, therefore, is as surprised as I am that I am a mother of so many. Yet here I am and with the three Biggins – that’s what I call them – there is little else that gives me more delight than seeing all the years of raising them come together and finding I now have these (tall, handsome) adult men in my life who are as engaging as anyone I have ever met.

However, raising children and running a household is only a portion of who I am and my greatest frustration in life has come from putting my career and personal goals in the back seat while bringing up my babies. And there I find my only regrets. Many things would I tell my younger self to do differently if I could: Don’t drop out of graduate school, give up your assistantship and move to Boston in a fruitless attempt to save your marriage. Don’t let your husband talk you out of good job offers time and time again. But most importantly, don’t think you can ever change anyone other than yourself because you can’t and you are wasting precious time trying.

Then again, we are who we are because of the experiences we have had. And at fifty, my little corner of the world is better than I ever imagined it might be even just ten short years ago when I was too young to join AARP.

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Presume Brilliance

lyra

Two years ago when Max and I attended our first National Down Syndrome Congress (NDSC) convention, Lyra was 11 months old and I was panicky. I felt we had a small window to engage her mind, teach her body to move optimally, and lay the groundwork for speech intelligibility. We left our first convention with lots of information and a plastic box from Talk Tools filled with straws, horns and bite sticks. Once home, we promptly bought a tumbling mat for gross motor exercises and began weekly sessions of physical, occupational and speech therapies at Akron Children’s Hospital. Because of these and other early interventions I have (mostly) abandoned my fears over what we may have missed.

Now three years old, Lyra walks, talks, feeds herself, helps get dressed, is potty training and does most everything expected of a preschooler. Meanwhile, Max and I have largely hurdled our Down syndrome learning curve by reading books, meeting doctors and therapists, attending programs, and getting to know other families. But just as important is Lyra herself. Not only can we now see the relative impact Down syndrome has on her abilities (not so much as we thought on the day she was born), but over the past three years, her personality has unfurled—she’s plucky, sweet and, yes, smart. Lyra is our music-loving, temper-throwing, messy-eating girl. She adores her brothers, her dogs and her cats and refers to each by name. She loves going to preschool and daycare but fights like a greased monkey when getting her contact lenses changed, her blood drawn or her teeth brushed. A daddy’s girl, she cries when Max leaves for work and eats all her food when he sits next to her at the table after defiantly refusing to try a bite for me.

Lyra is not Down syndrome; Lyra is fully human. A human who has Down syndrome.

The Long View

As our focus on Lyra shifts away from the acquisition of basic life skills, the only therapy she needs, for now, is speech. We confirmed this in Phoenix this past summer at the NDSC convention. For three years in a row physical therapist Pat Winders has evaluated Lyra’s gross motor skills at the convention. This year Lyra walked and ran for Ms. Winders, both in her braces (and shoes) and barefoot. “She’s doing great!” said Ms. Winders. “Her heels look straight, her feet are bending and her thighs are moving behind her as she strides. Keep her in Sure Step braces for a couple more years and then switch to an orthotic insert like Chipmunks. Remember, we don’t want our kids in physical therapy forever, she’s doing everything she should right now.” (Whew!)

As we explore educational options for Lyra and how we might advocate for her, we are no longer panicked. Currently she is thriving in preschool, and there is time to research what comes next. After three years of what sometimes felt like a graduate program on Down syndrome and early interventions, we can now look up and consider the long view of life for Lyra. And there is no better place to observe what her life as an adult might be like than at the NDSC convention.

Down Syndrome Self-Advocates

“Oh, look, there’s Aaron!” I said to Max. After a leisurely breakfast on the opening day of this year’s convention, we walked to the hotel hallway reserved for the self-advocates’ events, which include elections to the NDSC board. Each year we are greeted by Aaron who introduces himself, shakes our hands and asks that we help him get elected.

For you see, as much as the annual NDSC convention is a place for parents of children (of all ages) with Down syndrome to gain valuable information and make meaningful connections with other families, the convention is equally significant for teens and adults who have Down syndrome. The NDSC’s mission is to improve the world for people with Down syndrome through an organized collaboration of families of people with Down syndrome, the communities in which they live and, importantly, self-advocates. And their board of directors reflects this composition. Each annual convention has rooms dedicated to the board elections and self-advocate committees.

“How old do you have to be in order to vote in board elections, Aaron?” I asked, wondering when Lyra could participate. Aaron did not know so we approached a young couple walking toward us with supplies to decorate a table. Like so many self-advocates at the convention, they promptly introduced themselves. The four of us chatted about where we were all from when suddenly the woman poked the man’s side with a shrink-wrapped package of cardboard containers. “Don’t just stand there talking, help me open these,” she said teasingly. Both in their twenties, neither could remember when they first participated in the NDSC elections as they have been voting for many years.

We turned to a delicate woman working on a nearby table, her salt and pepper hair swept up in a Gibson Girl bouffant. “I don’t know remember when they can first vote, it’s been so long ago for my son, maybe fifteen?” She said and then asked, “How old is your daughter? Three? Are you working on speech? It is so important to work on speech. Have you met my Tony? You haven’t? It seems like everyone knows my Tony. He’s 27. Oh, you must meet him, where is he? Well, I’m sure we’ll run into each other again and I’ll introduce you.” We ran into Tony’s mom repeatedly over the next three days, but never managed to meet Tony. He was always off with his friends squeezing the most out of a weekend where Down syndrome is the rule, not the exception.

Seeing Myself in Sarah

What was once new is now familiar. After leaving the self-advocates’ hallway, we walked to the exhibit hall to find our friends. We hugged the founders of Down Syndrome Diagnosis Network, an organization that does such important work nationwide it is hard to imagine it has been in existence only a few short years. From DSDN we went to another young non-profit named for the daughter of founders Tim and Liz Planchta. Ruby’s Rainbow grants scholarships to people with Down syndrome for post-secondary education, whether it be college, job training or enrichment programs. Once unheard of, post-secondary education is becoming as common an expectation for people with Down syndrome as it is for all high school graduates, and with good cause. Many adults with Down syndrome are living independently and post-secondary education maximizes their employment options (um, you know, like it does for everyone). I regularly hear from adults with Down syndrome how important it is to them to be productive members of their communities.

After visiting friends, Max and I strolled through the exhibit hall. Writer Sarah Savage Cooley was selling her books at a table. In Of Love & Loss Poetry or Tears? she uses poetry to tell her story of falling in love, getting married, difficulties, divorce, and continued feelings of loss post-divorce. Writers commonly process major challenges in life, like divorce, by writing about them (I wrote a 300-page book about the end of my marriage). Ms. Cooley, who has Down syndrome, is no different. But it was The Selected Essays of Sarah Savage Cooley that rooted me to the floor in front her table. In “Following My Dreams,” she rails against her treatment as a child in a special education program:

When I was going to school I was normal like everyone else, but I was put into special education to get special help. Wherever I went I had an aide in each class. I am a hard worker, wanted to be independent. Instead I had an aide who helped me with the class work, the aides talked to the teachers. I even had special homework assignments. I always left the classroom with the aide for special help. I wanted to stay in the classroom to do regular classroom assignments like everyone else…When I had an aide in each class I felt so uncomfortable. I wanted to be an individual who goes to high school with her friends, goes to classes. But in each class I went to there was an aide who was with me, who didn’t want me to have my own space.

In “Found Out What My Future Will Be,” Sarah describes her frustration over the job she has instead of the career she wants:

I just wish everyone could stop treating me special and let me grow up and go my own way in my life and let me focus on my dream… It’s important for me to become a book author. That’s all I ever wanted to be in my life, and it’s the one thing I want to do for my future…I wasn’t planning on working at the Disabilities Rights Center for the rest of my life…I want to be in one place that I love, to go to college, study writing, work at a place of my dreams that comes true for me, be who I want to be, become a book author, and explore the world around me.

“You know, Sarah,” I said as I closed her book, “I am a writer and all I want to do is work on my book. But I have another job because I need to make money.”

“Me too!” she said, looking up at me through her wire-rimmed glasses, “All I want to do is write my book!”

We bought two of Sarah’s books, signed for Lyra. Moments later, we met a medical fellow from the Thomas Center for Down Syndrome at Cincinnati Children’s Hospital who researches depression in people with Down syndrome. I told him he should meet Sarah Cooley and read her books, poignant writing about the interior life of a person with Down syndrome. “Oh, I know her work,” the young doctor told me. “It’s required reading at the Thomas Center.”

I am writing a book on Down syndrome for people who do not know someone with Down syndrome because I want to eradicate the misperceptions of what it means to have three twenty-first chromosomes. Sarah Savage Cooley, using the same means of expression as me, the written word, has achieved this. Her books, in the hands of those who guide the research on and the care of people with Down syndrome, are changing perceptions. Sarah’s life has not always been easy, but she’s channeled her misery and frustration into her craft, thereby positively affecting the lives of countless people she will never meet. There is not much more a writer can hope to achieve.

Wait, Was That Who I Think It Was?

I think I saw Don’t Limit Me Megan! I texted to one of my oldest friends, Mariko.

Huh? She wrote back.

The video you sent me, girl with DS talking in classroom!

On my way to the ladies room, a young woman with long dark hair glided by me in a linen dress with black piping. Several minutes later it clicked: That was Megan Bomgaars! Many months earlier Mariko, who has a niece with Down syndrome, sent me Ms. Bomgaars’ YouTube video, “Don’t Limit Me,” which reminds me of my parenting mantra: “Push and support.”

All children have limited power in society and need adults to advocate on their behalf. I have done so for each of my five children. But children are not pets or, as Bomgaars says in her video, mascots. In her video, Bomgaars underscores the importance of holding the same high, but not impossible, standards for my daughter with Down syndrome as I do for my other children while also supporting her when necessary, which for Bomgaars included a school aide. (Yep, people with Down syndrome are not a monolithic group and can have different opinions.) Every educator should watch “Don’t Limit Me” and listen to woman with Down syndrome insightfully describe what is needed when educating children with Down syndrome.

The Awesome Tim Harris

WithTimHarrisParents at the NDSC convention often reminisce about the self-advocate keynote speakers they have heard over the years, which I attribute to two things: One, these keynote speakers are first-hand, living examples of people with Down syndrome leading rich, full lives. Secondly, in a weekend mostly spent listening to the trained experts on Down syndrome, including health care professionals, educators, researchers or lawyers, it is as important and so rewarding to listen to the true experts on Down syndrome: Adults with Down syndrome.

I arrived in the grand ballroom just as restaurateur Tim Harris danced onstage to Pharrell Williams’ song “Happy.” Speaking to over a thousand people, Harris was as commanding and infectious a keynote speaker as I have heard at any conference or convention, including those not related to Down syndrome. Here are a few snippets from his speech:

I am Tim Harris, I’m 29 years old and I am living my dreams! When I say “Oh, yeah!” you say, “Oh, yeah!”

Oh yeah! (Tim Harris)

Oh, yeah! (Audience)

I serve great food and lots of hugs. I have hugged over 70,000 people. The world needs more hugs. I’m doing my part, are you doing yours? Stand up and hug the people next to you!

Oh yeah!

Oh, yeah!

Believe in yourself. Fifteen years ago, Tim’s Place was only an idea. Today, it’s a tourist destination.

Oh, yeah!

Oh, yeah!

People ask me and my family advice and I did what any awesome person would do: I started a non-profit, Tim’s Big Heart Foundation, to help other people with disabilities start their businesses. Matt Cottle is here tonight to tell you about the bakery he started with the grant he got from my foundation.

(Mr. Cottle, who has autism, stepped up to the podium and spoke with the deadpan delivery of comedian Steven Wright as he described the hundreds of scones and other pastries his parents patiently let him produce in their house as he mastered baking. On the website for his business, The Stuttering King Bakery, Mr. Cottle points out that 91% of adults with autism are unemployed and his mission is “to impact the autistic world and serve as an inspiration for other autistic people to be productive, active members of the community.” Mr. Cottle hopes to one day open a brick-and-mortar bakery where he will employ others who have autism.)

I want to thank not only Matt for opening his bakery, but his family for supporting him and his dreams. (Mr. Cottle returned to his seat with his family.)

I am a superhero. My super power is love.

Be the light. When I was born, people told my parents they were very, very sorry I had Down syndrome. I guess they didn’t know how awesome I’d be. I’m sure it was scary for my parents but they always saw the light in me.

Use your light to help others. Everyone can be awesome.

Oh, yeah!

Oh, yeah!

Meeting Mr. Awesome

On the last day of the convention, I ran into a man in the lobby as I was turning with Lyra in my arms.

“Are you Tim Harris?” I asked.

“I’m Tim,” he said.

“You gave such a great talk the other night!” I told him.

“Thank you. But, but, tell me, is this your daughter? Do you know she is awesome? She is going to grow up and do awesome things and my foundation is going to give her a grant to follow her dreams. Don’t ever forget she is awesome!” And then he was gone, ushered out by his family who, perhaps more than everyone else, struggled to stay on schedule.

“You know, I heard he didn’t used to be so good at talking with people, that his success has really propelled him into everything he is now,” said one of our friends when I told him Lyra and I had just met Tim Harris.

It’s an upward spiral: the more Tim Harris accomplishes, the more he can accomplish. Do people like Tim Harris, Megan Bomgaars and Sarah Savage Cooley have the support of their families and friends? Certainly. But is that not true of most, if not all, people leading genuinely successful lives? Imagine, however, if their parents had believed that a child with Down syndrome would not read, write, do math—let alone write books, make films, own restaurants and start foundations? Sadly, that misconception is still widely held among people who do not know someone with Down syndrome and even a few who do. Yet these three adults and others with Down syndrome are not only succeeding personally, it is far from hyperbole to say that they are making the world a better place for others. Who among us can say the same?

Just as Lyra teaches us at home, these adult self-advocates teach me more than any session I have attended at the NDSC convention. When I talk with someone like Sarah Cooley or watch Megan Bomgaars’ video or listen to Tim Harris speak, I am inspired by them to live my life better, fuller and kinder. They are models not just for what my daughter can aspire to become, but what I can aspire to become too.

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Lyra’s Meme: People-First Language

In case you missed it on the Whoopsie Piggle Facebook wall, here is the meme created with the help of my friends, photographer Shane Wynn and text-adding queen Tiffany Stafford. Since October 1, just five days ago, it has been seen by more than 70,000 people and shared countless times.

We created this meme as part of our contribution to Down Syndrome Awareness Month in the United States, which is every October. But all year we encourage everyone to use “people-first” language. Lyra has Down syndrome, she is not Down syndrome. What seems a minor shift in speech has enormous impact on how people with disabilities are viewed and treated.

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A Year After a Painful Week

It has been a year since I wrote “A Painful Week in the Down Syndrome Community,” about three toddlers who died. Two left suddenly: a boy who contracted meningitis, unrelated to his Down syndrome, and a girl who suffered complications from a second heart surgery. Both of their families have created non-profits in honor of their children, T21 Ryder’s Foundation and Fiona’s Hope Totes. The third baby, Annie Wojtowicz, died slowly of heart failure in the arms of her family.

11699b0256fc7c39525a3d41267d538aI learned of Annie two weeks before she died while I was preparing to travel in Europe with my eldest son. I cried every day as I watched, via Facebook, this small girl grow weaker, her face more swollen, her eyelids red and puffy. My children asked me why I kept returning to Annie’s Facebook page when it made me so sad, they told me to stop, but I couldn’t. In her and her family I saw Lyra and our family, two daughters with Down syndrome born months apart, both with dual diagnoses, but only one of which was fatal. Annie died a year ago today and her family has shared their grief with the world on her page, Annie Golden Heart. In the days after Annie died the page was taken down, but then it returned and many people, including myself, continue to follow Annie’s family. As I traveled Spain with my son, I carried with me these three families while on Annie’s page I saw her funeral, her freshly covered grave, the unbearable sorrow in her parents’ eyes. I lit candles at every La Pieta station we found at every church we visited.

On Father’s Day 2014, Ryder and Fiona were only days gone while Annie had but three days left to live. The day before, I cashiered at World Market, where I work a handful of hours each week. It was busy, as it often is the day before a holiday, with people buying last-minute gifts and I felt cheerfully distracted from the sorrowful week. Then a woman my age bought a Father’s Day card with a photo of a child’s tiny bare feet atop a pair of leather oxfords, clearly dancing with her daddy. Tears suddenly rolled down my cheeks.

“I’m so sorry,” I said to the customer. “My daughter has Down syndrome and there have been babies her age who have died this week. Your card makes me think of their families.” People who have a relative with Down syndrome often speak of the uncanny coincidences that are seemingly commonplace in this community.

“I had a sister with Down syndrome who died when she was a baby because they couldn’t fix her heart back then,” said the customer as she held my eyes with her own. “My parents never got over losing her.”

Grief is a foreign country that makes citizens of all who travel there. Only previous visitors can fully understand the experience of those who find themselves suddenly dropped in the place that changes everything forever. While the only way through grief is to grieve, no two journeys are the same. But often the loss of a child is described as the most intense grief. The natural order calls for children to bury their parents, not for parents to bury their children.

In the year since these three children died all in one week, several other babies have gone too. The stories of children succumbing, often to heart or respiratory conditions, are shared and then these families disappear from the closed Facebook groups concerning Down syndrome. Our pediatrician, Dr. M., whose own daughter has Down syndrome, gave me a big hug in her office last summer. “I can’t do Facebook groups because I see so much loss just practicing medicine. We can each handle only so much.” Annie’s family continues to openly share their process and in so doing are, for me at least, something of a proxy for all those who have lost a child with Down syndrome this past year. Her parents and sisters regularly visit and decorate her gravesite and when the groundskeepers clear off the toys and tchotchkes, it exacerbates the pain of having had Annie herself taken from them. It seems to me that cemeteries should have special allowances for the decorating of children’s graves, particularly in the first year after the child has died.

Last August bioethicist Richard Dawkins tweeted to an expectant mother who asked him what she should do if her fetus was diagnosed with Down syndrome, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later claimed his position was humane as seeking to avoid suffering. The response was terrific. Articles appeared in places like the New York Times questioning the use of the term “suffering” as it relates to having a child with Down syndrome given the significant scientific research that proves just the opposite, something I, too, wrote about in “What Suffering? The Down Syndrome Advantage.” People with Down syndrome are overwhelmingly happy with their lives, their parents’ marriages are stronger than the national average (based upon divorce rates) and most siblings cite having a brother or sister with Down syndrome as a highly positive experience.

Annie’s family has observably suffered. The other families who have lost children with Down syndrome understandably, if not privately, have suffered too. At times, Annie’s father has posted a depth of suffering that is concerning. Suffering that is so great because the love is so deep.

Today, it turns out, is also an anniversary of a different kind. It is the fifth birthday of a little boy with Down syndrome in our local community. In a post that includes several pictures of the two of them together, his father writes, “Thanks for helping find my why, buddy!”

With any child comes the risk of unimagined suffering. But also the greater likelihood of immeasurable love and joy.

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That Which Doesn’t Kill the Kid

No one saves us but ourselves. No one can and no one may. We ourselves must walk the path. ~The Buddha

That which does not kill us makes us stronger. ~Friedrich Nietzsche

Hoping to nap for fifteen minutes in the middle of an afternoon in late March, my eyes snapped open at the sound of the bedroom door smacking into the wall. Hugo had flung it open and was bouncing towards me with his arms and legs bending and twirling at every joint like Ray Bolger as the Scarecrow.

“Guess who got into Eastman?” he asked, his voice pitched high and squeezed, nothing like the resonant baritone he’d advertised to several colleges during winter auditions.

“What?” I asked as I sat up in the middle of my bed.

“My phone just rang and it said ‘unknown’ so I almost didn’t answer it, but it was the admissions director and, ohmygodohmygod! I’ve been accepted to Eastman!” I leapt out of bed, embraced Hugo, who picked me up and twirled me around before we began bouncing up and down while spinning round and round.

“What about the money?” I asked when we stopped moving.

“They’ll send me an email with my financial aid package in a couple of days and so will the University of Rochester because I registered for a dual degree, but I can’t combine the packages.” At the time, neither of us really understood what this meant, nor did we care. The Eastman School of Music accepted Hugo, O-M-freakin-G!

Okay, so until last October, I’d never heard of The Eastman School of Music because, frankly, I know squat about preparing a professional musician. “Eastman is the Harvard or Yale of the music world,” the artistic director of an arts performance organization in the Cleveland area told me. I cannot imagine the scenario in which I would encourage one of my children to apply as an undergraduate to an Ivy League school, institutions of learning that were solidly branded before PR firms existed to encourage branding, because there are plenty of fine colleges without the high cost and pressure of an Ivy. As for the top-tier music schools, repeatedly Hugo and I have heard that these places give their undergraduates limited time with, and little attention from, faculty. In other words, they charge a premium price to receive training from a graduate students. Except, however, at Eastman. Still, given all the hoopla about Eastman, we had low expectations when we drove to Rochester for his audition on a snowy day in January. Then, within an hour after arriving, we just knew: Eastman is where Hugo belongs.

Well, Maybe

Then that proverbial other shoe dropped. Eastman offered Hugo a generous financial aid package of $41,000 a year. It costs $65,000 a year. “Hugo, I cannot advise you to take out nearly $100,000 in private loans for any degree, but particularly a degree in music.” The other offers had also come in—two universities offered Hugo a full ride, ironically both my alma mater, Ohio State University, and his bio-dad’s alma mater, Miami University of Ohio. Two other schools, Baldwin Wallace and Capital University, offered him packages that would have cost only $2,000 a year. Capital University in particular made it very clear that they wanted Hugo in their program. Being wanted feels good, and Capital has strong faculty and a well-regarded music education program. Then, in April, when competing at the National Association of Teachers of Singers, which is open to both high school and college-level students, Hugo observed a camaraderie among the Capital students that is not necessarily commonplace among vocal performance students.

“I’m okay with going to Capital, in fact, the idea of it makes me happy,” he told me sometime during the week before May 1, the national deadline to commit to a college or university.

Money, Money, Money

Lynne Twist, a co-founder of the Hunger Project, an organization with the lofty mission of eradicating world hunger, wrote in the The Soul of Money that money is like water—we need it to live, but it must flow. If we do not allow it to flow, it becomes like a stagnant pool. But more importantly, Twist encourages aligning finances with values and recognizing the falsity of what she calls “the myths of scarcity,” which are: 1) There is never enough; 2) More is better; and 3) That’s just the way it is.

Looking back, my basic needs have been met throughout my life. From time to time and by necessity, expenses are problems that need creative solutions. My belief that my needs will be met through hard work and creativity was never so challenged as when I left my ex-husband. Throughout our marriage, he had discouraged me, both directly and through subterfuge, from pursuing a career (even telling me in the months before I left him that he feared I would meet someone else should I become gainfully employed). When he quickly withheld money after I had told him I wanted to separate, I applied for food stamps and Medicaid. I cleaned houses with a friend and took out student loans while finishing my MFA. Times were lean, but my boys and I were fine. In the second year of our long divorce when my ex-husband refused to contribute ever again to Jules’ education, the Waldorf school provided financial aid for his tuition and his tutor for his dyslexia reduced her fees. As their father believes the child support garnished by the state from his paycheck is his contribution towards the boys’ college education, a belief he has steadfastly held and often reiterated, Claude received a non-custodial parental waiver for the purposes of calculating financial aid at his college and receives, based upon my income, the highest need-based package available.

My mother’s constant refrain when I was growing up was, “We don’t have enough money.” Yet we always lived in nice, if not expensive, houses bought in public school districts with good reputations. We had newer cars, plenty of food and clothing. Though not deluxe, and often combined with work-related conventions, there were vacations. “I don’t know how I’ll pay the bills,” said my mother each time a paycheck arrived. Perhaps a function of her generation more than her obsession with control, I was forbidden from looking at any bills and, therefore, had no sense of what it cost to run a household. Of all the things that made me anxious as a child, worrying about how the bills would get paid was not high on my list but her continual cries of the wolf at the door added warp and weft to an already stifling pall of stress.

I wanted something different for my children. When each has turned three, I gave them jobs and money. For years I deposited their weekly allowance, determined at the rate of a dollar for each year of their age, into their bank accounts. By the time they were ten years old, Claude and Hugo had saved enough to purchase a $500 certificate of deposit. And when they turn 13, I show them my online checking account statements. “Here’s the deposit, and here are the expenses,” I explain as we scroll line-by-line through two months of entries. I’d like to say all this has made my kids equally thrifty, but personality is a powerful determiner of behavior. Claude and Jules, who may as well be identical twins born six years apart, sit on enviable nest eggs. While not skinflints, they use their money for purchases that are considered. Hugo, on the other hand, better make a ton of money. Magnanimous by nature, he spends whatever cash he has rapidly and generously. As a result, he’s usually broke. Sometimes when he’s in a financial pinch, he’ll throw his guitar on his back and head to a bustling area to busk, playing guitar and singing so passersby will toss cash into his open guitar case. It works. For now.

Walk the Talk: Turning Over Every Rock

I wrote the Eastman School of Music and asked for more money. They upped Hugo’s financial aid package to $45,000. While generous and far more than the full cost of all the other colleges to which Hugo had applied, it was not enough, even if Hugo won every private scholarship for which he has applied this spring. That’s when Hugo determined that his number two choice, Capital University, was more than fine. But also we investigated the University of Rochester’s package, learning two important things. First off, the UR paperwork mistakenly had listed Hugo as not interested in financial aid and to correct that error, I spent two days filling out and emailing documents needed to process Hugo’s financial aid application for UR. It was like doing my taxes five times over. What we also learned was the reason Hugo was listed as a dual degree is because on his application he wrote that he wanted to pursue a bachelor of arts degree, or BA. We did not know at the time that the degree the Eastman School of Music gives vocal performance majors is a bachelor of music, or BM. (Remember when I said I know squat about preparing a professional musician?) At 3pm on April 29, we learned that Hugo’s UR financial aid package requires us to cough up only $6275 a year. However, it also requires Hugo to enroll as a dual-degree major—vocal performance and something from the University of Rochester, like history or English.

It was no slam dunk and we had 48 hours to make a decision.

The Challenge of Talent

I practice because I think I’m making progress. ~Cellist Pablo Casals at age 90

More than any other person or topic, Whoopsie Piggle essays are frequently about our daughter, Lyra, and how her dual diagnoses of Down syndrome and bilateral cataracts have and have not effected who she is, repeatedly underscoring that Lyra is not the syndrome she has nor is Down syndrome an illness. She is fully human and deserves the same rights and privileges as all other humans. But her Down syndrome and vision impairment undeniably influence her identity. And for both diagnoses, Lyra has teams of professionals, including doctors and private therapists who work with her at Akron Children’s Hospital and state-employed therapists who visit her at our home. Beginning next fall, Lyra will have a new team of therapists working with her at an integrated public preschool. I also have a local support group, a national Facebook support group, aggregated by the age of our children with Down syndrome, and Max and I attend the annual National Down Syndrome Congress’s convention. If I have a problem or question regarding Lyra or her Down syndrome, I have multiple resources at my disposal.

IMG_2563Undeniably, the second member of our cast of characters about whom I most write is Hugo. He is simply the hardest child I have had to raise primarily because he is someone who excels easily. And for that there are no squadrons of professionals to help guide my parenting. Hugo the second born who, unlike his first and third-born brothers, has encountered but one significant challenge in his life: simply himself. Claude and Jules, both dyslexic, required years of remediation to learn to read. Hugo picked it up in the first weeks of the first grade. Claude and Jules struggled with the coordination to play baseball, while Hugo is a natural catcher and, to a lesser degree, pitcher. Claude, who is three years older than Hugo, forced himself to ride a bicycle when it looked like five-year-old Hugo was going to do so first. Along the way, and seemingly because of their struggles, Claude and Jules developed incredible self-discipline and strong work ethics in all that they do. It is how they overcompensate, something Hugo, who succeeds at whatever he attempts, never needed to do. That is, until he wanted something he could not possess merely by desiring it to be so.

Music is for Hugo what water is for those with gills, what air is for those with lungs, what jet streams are for those with wings. Every instrument he picks up, he soon plays well and he went to the Akron School of the Arts at Firestone High School as an instrumentalist. Before long, however, he knew differently. Hugo is a vocalist whose voice, with time and training, has become rich, his phraseology clear and engaging, and he takes the stage with the pleasant confidence of someone who enjoys performing. I suppose it was always there, this unpolished vocal talent. But he did not stumble upon it. Another young man, someone Hugo grew up with and who was his teammate throughout eight years of Little League baseball, was the star vocalist of their class the day they entered high school. This needled Hugo’s competitive side and he worked his freshman year, his sophomore year and his junior year to surpass the other singer. Their senior year, Hugo was named king of the madrigal choir, a role that is not just musical, for together the king and queen manage the choir from booking gigs, collecting fees, arranging transportation, calling for additional rehearsals and whatever else comes up.

Great. This kid does one thing well. With most everything else, however, his modus operandi is a devil-may-care attitude. My parenting mantra is “Push, Support; Push, Support” push them to strive for what they desire in life and then support them to reach their own goals (and, sure, a few of my own). Instead for Hugo, and only for Hugo, the mantra is “Push, Push, Push, Dammit, PUSH!” Consider:

Chores: For most of their childhoods, the boys had Saturday chores that included floors (vacuum and Swiffer), bathrooms (scrub sinks, toilets and tubs, wipe mirrors and counters) and dust (wipe all furniture surfaces, lifting and dusting under objects). They rotated these three jobs each fall so they all learned how to keep house (their one-day partners can thank me). Do the job right and you can be done in less than an hour. Do the job poorly and you get to do it again. Three times over was the average for Hugo and I came to dread Saturdays.

Homework: “Hugo, how is it you had an A in math last term and an F this term?” I asked him when I received his final report card for the fifth grade. “Well,” he told me without a drop of irony, “the teacher just started assigning too much homework.”

True confession: Through grade school and middle school, I received mostly As in language arts and social studies. In math and science, Ds and Fs, but mostly Fs, were not uncommon. And I did not care. Nor did my mother. My freshman year in high school, my Latin teacher changed that. But nothing has happened to Hugo to make him determined to succeed in courses that do not specifically interest him. Yet. But the truth is in college, unlike high school, coursework is primarily in the student’s areas of interest and all required courses have multiple options.

Big Picture

Waldorf educator and author Jack Petrash once said that it is the job of parents to get children to do their work and it is the job of children to get out of as much work as they can. All kids dawdle, make excuses and cut corners when presented with chores or homework in a subject they don’t love—at least all my children do. And when a child is clever, so too are their methods. When Hugo was about six years old, I remember stopping mid-sentence in a tug-of-war talk with him. “Why am I negotiating with you?” Somewhere between the acquisition of speech and that day when I suddenly realized what was going on, Hugo had been riding me to town and back, requiring me justify my demands of him. I stopped negotiating (mostly), but he continues to ask me why.

No, Hugo is not the bean counter, he’s not the detail guy—except when he is. He prepares, over-prepares even, in all his musical endeavors. And Hugo is a leader. He responds positively to sound leadership and, particularly in his last two years of high school, he provides strong leadership, whether as section leader in marching band, leading the madrigal choir with his partner, the queen, or working with the students in the intermediate choir at the request of his choir director. He wants to start coaching Little League baseball next year when he comes home from college. Can he be self-absorbed? Sure–after all, he is a teenager. But he also easily gives his time and energy to help others, including me. He is far more willing, in fact, to rearrange his schedule when I need help with errands or picking up the little kids than Claude ever was in high school.

Supporting Hugo

I have pushed Hugo to do his best. “No matter how talented you may be nor how much a music school wants you,” I told him, “with bad grades you won’t get into a university.” I hired a tutor to help him with math and prepare for the ACT. I have paid for many years of music lessons, which he cared about so deeply that at times I stopped sending him when he was not turning in homework. It was the only consequence that felt punishing to him and got his attention.

I also support Hugo when he gets lost in his ambition and needs reeled back. Last fall he was so overcommitted, he became ill. I told him he would be better off doing less, but did not force him to quit anything. He came to that decision on his own. I went with him when he resigned from marching band, saying only what was necessary when the band directors became jaw-droppingly inappropriate. (Marching band is currently off the table for Jules, Leif and Lyra.)

Now life has handed Hugo something he wants dearly at the cost of facing what he knows are some of his weaknesses—time management and prioritizing multiple demands made of him. He will, in essence, need to excellently serve two demanding masters. It is a path most anyone would find daunting. The Buddhists (and probably all great teachers) say that when you must make an important choice, choose the harder path. The harder path will likely cause discomfort, thereby disrobing you of your delusions. The harder path is the path of transformation, choose it and you may become the person you wish to be. Avoid it and you will never know the true value of your potential or even, perhaps, who you truly are.

His Choice

“What do you think I should do?” Hugo asked, lying on the floor of my bedroom. It was the day before he had to commit to a college. We spent the afternoon together. Nobody else was home.

“It is not for me to decide, Hugo,” I said, lying on my bed. “In order to go to Eastman, you must do a dual degree, which means by default you’ll be overscheduled. You’ll either learn to manage your time and prioritize your work or you will flunk out, probably in your freshman year.”

“Yeah, I know.”

That same day, Hugo talked to four Eastman vocal performance majors who are in the dual-degree program. They all said it was hard but worth it. The reason Hugo put down a BA on his application is because I have always told the boys to get BAs and not BFAs because a liberal arts undergraduate degree is a buffet of learning and an opportunity that comes only once. Graduate school is the time for specializing and professional degrees. And Hugo, like Claude (and me), enjoys history, art and foreign language. He also loves chemistry.

“Mama?” Hugo called as he walked down the hallway first thing the next morning. He walked into my bedroom still in his bathrobe, a cup of coffee in his hand. It was May 1, national college commitment day. “I’ve decided I’d regret it the rest of my life if I didn’t go to Eastman.”

“Ok. Call the admissions director at Eastman and let her know. I’ll send in your deposit.”

Thrilled and scared in equal measure, and also relieved to have the college admission odyssey behind him, he chose well.

 

 

 

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Raising Voters

As a mother I sometimes parent by fiat, with no negotiation. There are small things–such as We never, ever buy items displayed in the check out line at the grocery store. But most are big things related to how we treat others and the earth. If I were put in charge of the United States, I have another small list of items that mirrors my mom-as-dictator list. Most of these items are civil rights issues. For example: treat all humans equally and, in the case of criminals and drug addicts, work for rehabilitation and not simply punishment (while also recognizing that certain crimes and criminals necessitate life in prison). But also near the top of my list would be compulsory voting as voting is inarguably an essential component, if not the most essential component, of a healthy democracy. Since 1948, the highest turnout of eligible voters in the United States for a national election was 65%. That was in 1976 and since then, the numbers have been under 60% except for 1992 (61%), 2004 (61%) and 2008 (63%). In non-presidential election years, the turnout hovers around 40%–far lower than the turn out rate in most other established democracies. This is in spite of a number of non-profit organizations working tirelessly to increase voter turnout. One such group, Rock the Vote, is a non-partisan organization that for over twenty years has worked to get young people registered and committed to voting. Their current work targets the so-called millennial generation, or millennials, the largest generation in the history of the United States (yep, bigger than the boomers).

Visiting our legislators in DC (and the Smithsonian).

Visiting our legislators in DC (and the Smithsonian).

I do not know who reads this blog, but given that I write largely about family issues, including raising one child who has Down syndrome, I suspect a number of you are parents. So for those of you with young children, let me tell you this: You have far more power to influence your children to vote than any non-profit does, no matter how many cool young celebrities they employee to talk, sing and dance in their commercials. But, like pretty much everything else, you have to model the behavior you wish to see. Yes, I often took my kids with me when I vote on Election Day at our polling station. Due to progressive (read: excellent for democracy) changes recently in Ohio voting regulations, I generally vote at my county’s board of elections in the weeks prior to Election Day. But in many years voting is not an annual one-day event; it is the culmination of weeks, if not months, of work on all our parts. In both local and national elections, my children have gone with me on leaflet drops, canvassing for candidates and Get Out the Vote (GOTV) campaigns. When they were younger, I never asked my kids if they wanted to join me, I just packed them up and brought them along. (Truth be told, as a complete stranger it is easier to get someone to open their door when accompanied by children.)

I know going to the doors of the homes of complete strangers is not something that everyone is comfortable doing. Heck, I’m not comfortable doing it, but I push past my comfort zone and walk up to houses in neighborhoods where I know nobody. Like any positive endeavor that causes a little nervousness—public speaking, asking your boss for a raise, giving a heartfelt apology—the feeling when finished is satisfaction. And when they join in the effort, even passively, that satisfaction is not lost on the children.

In the general election of 2008 Akron Public Schools were closed on election day because many of the polling stations were located in the schools. As a result, my son Hugo, who was 11 years old a the time, was home alone. I worked at my job, my eldest son, Claude, was at the University of Akron and Jules was a second grader at the Waldorf school. “I’m going to the Obama headquarters today,” Hugo told me over breakfast. A few blocks from our house, Hugo walked himself to the headquarters and was promptly put to work rolling posters. I cannot tell you how proud I am that Hugo worked on that historic day for our soon-to-be president, particularly because it was his own idea. And in recent years, as they have become young men, my three oldest boys are civically engaged. Claude regularly works on local campaigns when he is home from college (and grouses with me about our deep dissatisfaction with the leadership in the Ohio Democratic Party, which despite having replaced the chairman after last year’s series of bone-headed mistakes seems to remain same-old, same-old. Shouting out for younger blood and fresh ideas, O, party of ours!). Hugo worked with me on GOTV on Election Day 2012 and we were giddy with the positive reception we received. And Jules travelled with me in the winter of 2014 to Washington D.C. where we met with our senators and representatives to encourage their support for the ABLE Act, which subsequently passed ten months later.

A family that votes together...

A family that votes together…

For most of their lives, I believed that when each of my children turned 18 I would march them straight to the board of elections to register to vote. And with Claude, I did. I plucked him out of school, took him to the BOE, snapped a picture of him with the county worker who helped him with his form, and then took him out for a nicer than usual lunch. Last November, Hugo turned 18 and while I could make many excuses, the fact is I did not prioritize getting Hugo registered. I deeply regret this because next week we have a special election in our county with just one question on the entire ballot: Do you support the levy for our county library system? Yes or no? With the decline in housing prices due to the recession, the funding for our library system has commensurately dropped. Yes, this is a local issue, but supporting library systems is invaluable nationwide. Carl Sagan once said, “Frederick Douglass taught that literacy is the path from slavery to freedom. There are many kinds of slavery and many kinds of freedom. But reading is still the path.” Today, however, libraries also have become de facto public after-school programs for latchkey children nationwide.

imgresWhen Hugo was in middle school, he walked most days down a hill to the adjacent library in a transitional neighborhood (the direction in which it was transitioning was not clear). I had three kids in three schools all far from one another and because he was safe in the library, I picked up Hugo last. Filled with children from 2:30 until they closed at 6 p.m., I saw librarians taking their non-funded mission seriously, providing extra programming, leading book clubs, holding craft events, game days and, once a week, showing a movie. Today, our county library system works with the local food bank to provide nutritious snacks for the kids, some of whom eat their school lunch at 10:30 in the morning. If our levy does not pass next week, this phenomenal public resource will cut its staff in half, from 400 to 200 employees countywide. Hours will also be slashed. They start with the weekend hours, but with such drastic cuts, I imagine after-school hours and programming will also shrink.

With my newly-minted voter

With my newly-minted voter

In our family, we do not passively observe and discuss government. Sure, we talk about what we do and do not like in local, state and federal government. But then we work for the values we hold important, particularly equal rights. Because I have seen too many elections, especially in the spring, decided by just a handful of votes, I deeply regret my inaction. Even though I long ago learned the library levy would be on the May ballot, I failed to have Hugo register in time to be eligible to vote in next week’s election. Instead, he accompanied me to the board of elections earlier this week. I voted; Hugo registered and we had lunch at a restaurant across the street from the main library in downtown Akron. Mea culpa, by complacency, I screwed up.  And so, dear readers, if you have an election next week, please vote (yes, Democrats and Republicans alike, go and vote). Readers who live in Summit County, Ohio, the jobs of two hundred people in our community depend upon your vote. As do all the citizens served by our libraries, including the children who safely work on their homework, play games and read books after school when nothing else is available.

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Why My Children Are Now Fully Vaccinated

With winter’s departure, the long-dormant mud in the meadow of the K-8 Waldorf school my youngest sons attend is back. So, too, is whooping cough. Six years ago when there was an outbreak at the school, my son Jules, who was then in the second grade, caught it. A dreamy, lithe child with large eyes, I watched for three months as his body convulsed while he coughed for minutes at a time, leaving his ribs aching and his eyes floating in tears from the exertion. Unlike his two older brothers, I had not vaccinated my son for pertussis, commonly known as whooping cough.

Lately, after several outbreaks of measles in the United States, there has been renewed media attention given to the anti-vaccination movement, much of which would leave any reader thinking that anti-vaxxers are either ignorant of basic science or sociologically indulgent, willing to coast on the high vaccination rates of others. I am neither.

When my first child was born in January of 1994, many societal constructs were being questioned with some Americans opting out of what had seemed inviolate institutions just a generation earlier. While not all practiced equally by the same groups of people, things such as co-habitation before marriage, homeschooling, homebirth, organic and local agriculture were no longer unheard of and, at least in the case of premarital co-habitation, were well on the way to becoming a new norm. It was in this milieu that I gave birth, at home, to my first child. I had medically appropriate prenatal care throughout my pregnancy and after my son was born, the midwives administered a PKU test, pricking his heel and filling dots on a card with his blood to be sent to the local health department to screen for about 40 possible disorders. I also received a Rhogam shot to prevent my negative blood type from creating antibodies lest any future fetus have positive-typed blood. Circumcision is not religiously significant to me but was another previously accepted protocol for all infant boys with many hospitals often performing the procedure as a matter of course. I read all I could on circumcision and found no compelling reason to cut off my infant son’s foreskin.

syringeChoosing whether and when to vaccinate, as well as what vaccines to give my child, was not so simple for me as choosing homebirth or foregoing circumcision. After reading everything I could find, I decided to follow a middle path of my own. Japan, hardly a backwards country, was at the time initiating vaccines for children not at birth, but at the age of two. With the exception of Haemophilus influenza Type b, or Hib (which is most harmful to children under the age of five, but especially babies), I decided I would begin vaccinating my son at the age of one, when his immune system had developed. I believed, with good reason, that as an exclusively breast-fed baby for nearly nine months, he was benefitting from my immunity.

In the 1990s, I was hardly alone in struggling with concerns about vaccinating my child. At the time, many educated parents questioned several important things about vaccines. The vaccine for DPT (diphtheria/pertussis/tetanus), for instance, was often cited as being mixed in dirty solutions. This was confirmed for me when I met with my son’s pediatrician to begin vaccinating him in the winter of 1995. We were living in Boston at the time and she told me that Massachusetts had created its own batch of DPT, available only in that state, to avoid using the tainted batches found in the rest of the country. However, that same pediatrician was incredulous when I insisted upon strictly giving my son the killed polio vaccine because it was possible, albeit a very small risk, to contract polio from the live vaccine. “You have to give the live vaccine in the first dose because it has to go through the gut, which is how the disease enters the body,” she told me. When I mentioned that diphtheria was also contracted through the gut but the vaccine for that disease was not given through the gut, she had no response. I stuck to my guns and four years later, in 1999, the United States abandoned the use of live polio vaccines.

There were also issues with other vaccines in the 1990s. In 1998, the rotavirus vaccine was introduced and recommended by the American Academy of Pediatricians for all infants. It was pulled the next year when several children required surgery for intestinal blockages directly linked to the rotavirus vaccine. It was eventually reintroduced in 2006, which means it took seven years of research to resolve the issues with a vaccine that for one year had been recommended for all infants in the United States.

And then there is the thimerosal controversy. A derivative of mercury, which is highly toxic in certain formulations (but not in elemental liquid mercury), thimerosal was still abundantly used to preserve vaccines in the 1990s. At the same time, autism diagnoses exploded to what felt like epidemic proportions. A diagnosis that was rare, though not unheard of, in my childhood became so common in my early years as a mother that it felt like an inevitably with each pregnancy. So significant was the increase of autism and Asperger’s (which is now seen as part of the spectrum of autism) it seemed implausible to think the increase was simply due to improved methods of diagnosis. Thus, it is not surprising to me as someone who lived and bore children in the 1990s and early 2000s that parents were susceptible to claims that thimerosal in vaccines caused autism. Eventually, in 2011, an article in the British Journal of Medicine thoroughly discredited any connection between thimerosal and autism. But by then my firstborn was seventeen years old and my third son, Jules, had long recovered from his pertussis.

Neither out of stupidity, nor out of entitled indulgence did I vaccinate my children differently. I struggled to find the best way to protect my children from disease and from the risks in vaccinating. Sure, the chances of contracting polio from the live vaccine were very slim, but if it is your child who is the one in a million, the results are no less devastating because 999,999 other children did not contract the disease.

My third son was born in the summer of 2000 and like his brothers I had him immediately vaccinated for Hib. When he was a year old, I began his regular vaccinations. But then we moved and I did not complete the cycle. Today, I struggle to recall why that was and I do not believe I simply had forgotten to complete the booster schedule; there was an element of choice. A choice made in part due to continued distrust of less significant vaccines. I read several articles in non-mainstream publications that cited the inefficacy of the annual flu shot. Then, in November of 2009, The Atlantic published a comprehensive article on the flu vaccine that pretty much agreed, across the board, with the non-mainstream publications.

My oldest son is now twenty-one years old and many of the issues I had with vaccines when he was an infant have been resolved, which may be due in part to the fact that a small percentage of the population began opting out, thereby putting governmental light on their concerns whether real, as in the case of polio and rotavirus, or not, as in the case of thimerosal and autism. But when I watched pertussis debilitate my son Jules for three months in 2009, I had what I call a “Coming to Jesus Meeting” with myself in which recognized the following:

  • None of today’s vaccines come with the risk of developing the disease for which the vaccine is being given such as it was with live polio.
  • Not only has the thimerosal/autism theory been thoroughly debunked, since 2001 thimerosal has been removed or greatly reduced in nearly all vaccines.
  • Furthermore, with cleaner, safer vaccines it is important to consider the collective benefit of herd immunity. I worry about infants who are exposed to the pertussis that is now roaming the halls and playgrounds of my children’s school.

I reviewed my three sons’ vaccination records and had them all brought up-to-date and inoculated for things I had chosen to forego in the past, such as Hepatitis A and B. I went on to have two more children in my forties, both of whom have been fully vaccinated on schedule in part due to the approach of my pediatrician. An M.D. PhD, our pediatrician is never condescending when she talks candidly with me about the latest research on vaccines. My fifth and final child, who is also my only daughter, has Down syndrome. People with Down syndrome can have suppressed immune systems and my pediatrician told me that studies of children with Down syndrome have shown that vaccination not only protects these children from the specific diseases, it also improves their immune systems overall.

Where there is a need, vaccines should be improved and gone are the days when physicians can talk to most patients or the parents of patients in a patriarchal, top-down manner and expect unquestioned obedience. Medical personnel owe it to their patients to give them accurate, up-to-date information without any trace of condescension. For the history of vaccination, inarguably one of the greatest scientific advances in human history, is not uncomplicated. But today, more than ever, the benefits far and away outweigh any risks and I hope that one day soon pertussis, measles and mumps can go the way of small pox, which has been eradicated through vaccination. (The same would be true of polio but extremists in parts of the Middle East have gone so far as to murder health workers in order to prevent the administration of the polio vaccine in their regions.) Because no child should unnecessarily suffer, as my son did, from a disease that is entirely preventable.

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Seen as Sick: Conjuring Illness to Deny Full Humanity

“Is there a vagina?” I asked the midwife.

After a summer of crop-killing drought, rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning, opened our windows and a soft breeze cleared out the re-circulated air. Sitting on my side of the bed, I looked out the screen door to our veranda while I waited for each contraction, watching the soft rain, breathing in the fragrant storm. When I began to push, just a couple of hours after hard labor had begun, the storm seemed to move with me. Still falling in straight lines, the rain grew heavy and splattered noisily on the heat-hardened ground. Fifteen minutes later the baby emerged, the rain stopped and, as unbelievable as it sounds, the clouds parted just enough for a shaft of sunlight to settle onto the soaked lawn.

My fifth child is my first daughter. Or so the doctors had told me during a level II ultrasound exam eighteen weeks into my pregnancy. But reading an ultrasound is a subjective art and there are no guarantees of the analysis. We knew this.

Because I was 46, I underwent many prenatal tests while expecting my last child. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and that beautiful is better than good. Having decided we would not terminate a pregnancy if the fetus had Down syndrome, my partner and I passed on an amniocentesis. Furthermore I believed, whether intuitively or superstitiously, I would lose the baby if I had an amnio. That’s because my grandma, who mothered me unlike anyone else, had four boys because her only daughter died at birth. Grandma had a negative blood type and the blood of her baby girl, her second child, was positive. At the birth of her first child, Grandma’s blood had created antibodies against his positive blood type, which remained in her body and later killed her daughter. Since the 1970s there has been a remedy for this. After each of my babies’ births, for I too have negative blood, I was given a RhoGam shot that prevented my body from building antibodies to positive blood.

Grandma kept trying for a daughter, even when my grandfather did not agree, but only boys came. When I learned my fifth child was female, I believed an amniocentesis would cause me to lose my baby just as the Rh factor took Grandma’s daughter. It isn’t logical, I understand, but I felt very strongly about this connection. I still do.

Bluish and slippery when the midwife handed her to me, the baby screamed long and loudly. Her eyes remained closed as I began nursing her. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect. When she finally opened her eyes, I mentioned that they looked “Downsy.” I saw a bulk of skin on the back of her neck, and then the ghostly pallor of her pupils. I mentioned these things to the midwife, who had listened to Lyra’s heart the moment she was born, and she told us she’d fully examine the baby in a bit, to just hold her for a while. In the middle of our bed, Lyra’s father and one of her brothers huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.

My daughter has Down syndrome. And, when she was born, she was blind. The murky white of her pupils, the color of breast milk in a glass bottle, was bi-lateral cataracts. All of which left me to revisit what I thought I desired in a daughter, what it is to have Down syndrome and, ultimately, what it means to be fully human.

The first days of Lyra’s life were filled with appointments: pediatricians, a geneticist, a genetics counselor, two ophthalmologists, and several lab technicians. I did not cry when Lyra’s diagnoses of Down syndrome and cataracts were explained to us, her father and I just pragmatically, if not numbly, proceeded with what we needed to do for our infant. On the weekend after Lyra’s birth, we finally stayed home. Our midwife came to check on us and during her visit my partner drolly mentioned that he had to change all the diapers while I just lazed about. After she left, I told him how embarrassed his stupid diaper joke had made me feel, how I could not believe after a week of traipsing from one specialist to another when I had just given birth that he would call me lazy, even in jest. Anger suffused with pain until hot tears rolled down my face when my rational brain stopped driving my mouth, “And I don’t even have a daughter who will want to do the things mothers and daughters do, like, like go shopping! And what about a wedding? And all those things, school, books, what will we have?”

Right then, just days after her birth, I did not know how having Down syndrome would affect Lyra and nobody could tell me because people with Down syndrome have a wide range of abilities. But only after my bubble of grief had popped open and spilled all over our bedroom could I look at the contents. First of all, what were all these sexist stereotypes I suddenly felt were taken from me? I don’t even like shopping. I’m what I call a “surgical shopper,” I’m in and out, zip-zap, going to the same stores where I know things fit my family. The idea of spending a day shopping makes me glaze over with catatonia. Why did I care about a wedding? I never thought about weddings when my four sons were born. That episode in our bedroom was the first of many installments in which I would question whether I felt a certain way or, later, if Lyra behaved a certain way because (unlike all my other children) she is a girl or because (unlike all my other children) she has Down syndrome. If Lyra had 46 chromosomes, would I have thought, shortly after her birth, about shopping and a wedding? I will never know.

What I do know is that with each newborn a family is reinvented and there is a period of adjustment for all its members. First, a couple becomes parents of an only child. If they carry on and have a second child, the family has an adult to child ratio of 1:1. Should they continue further and have three or more children, the parents are outnumbered and in a whole different league of parenting. Also, with each baby the sibling order is reconfigured. But as both our first girl and a child with multiple diagnoses, I questioned things with Lyra that I had not encountered with my previous newborns. How would having an extra chromosome affect her? How could we make sure any disadvantages or discrimination Lyra might face, as a woman with Down syndrome, not be compounded by the limitations of her vision? The truth is, we have no way of predicting the long-term significance of Down syndrome or bi-lateral cataracts on Lyra’s abilities. In some ways, that has been more unnerving than the diagnoses themselves, a sentiment echoed in one of the first books I read on Down syndrome in which a mother of an older child writes, “I wish I had worried less about who my daughter would become and enjoyed the baby she was.”

Our first two years with Lyra were as though I woke up to find myself unexpectedly enrolled in a graduate program on Down syndrome and, to a lesser degree, vision impairment. Lyra’s father and I have read (often not the same) many books, articles, and blogs on Down syndrome. We began attending different meetings of local support groups, as well as the annual conventions of the National Down Syndrome Congress, conventions that function much like academic conferences. But as a writer, I process life by writing. So, when Lyra was three months old, I began a blog about our entire family, with Lyra as the inevitable focus of most essays. There are now more than fifty of these essays and when I read back I see not just a record of Lyra’s first years, but also my own evolution in understanding Down syndrome.

In one of the first essays, I describe learning about Lyra’s diagnoses and, while we loved her immediately and perhaps with even more ferocity than with our other children, feeling unsettled about how her diagnoses, especially her Down syndrome, would manifest. Months later, I re-read that essay and cringed at two terms I had used, one of which I promptly removed. It was the word “healthy,” which I had used to describe what I had wanted my daughter, in fact all my children, to be. Webster’s defines healthy as “enjoying health and vigor,” with “ill” as the antonym. Webster’s also defines health as “the condition of being sound in body,” with the antonym of “illness.” It is true that anywhere from 40% to 60% of children born with Down syndrome also have heart disease, ranging from holes that close on their own to multiple, severe defects, and we have known far too many children Lyra’s age who have died in their third year of life due to heart conditions. But most children with Down syndrome who have heart disease do not die and instead their hearts are permanently repaired either naturally or surgically. Fortunately for us, the pediatric cardiologist who performed Lyra’s fetal echocardiogram was correct: Lyra’s heart is beautiful and beautiful is better than good. She had a post-natal echocardiogram that once again revealed a perfectly healthy heart.

The other term I cringed at, but left in that early essay, was “milder symptoms,” which I had used to describe what I wished for Lyra. “Milder symptoms” is a legacy of the terms “mildly retarded” and “severely retarded,” both of which were commonly used to discuss people with Down syndrome when I was growing up in the 1970s. Rather than remove the words “milder symptoms” I left them as an example, which I discuss in a separate essay, of how the language regarding Down syndrome has changed rapidly in my lifetime, paralleling all the other changes surrounding the housing, health care, education and integration of people with Down syndrome. In the past twenty years, the word “retarded” has been deemed derogatory in any context. The same needs to happen to the words milder/mildly and severe/severely, comparative words that are routinely assigned to the symptoms of illness including fever, pain, nausea, and rashes (just look to the previous paragraph for an example). They are also used to describe outbreaks such as the annual flu and epidemics of disease. But having a mild or severe case of an extra chromosome is akin to having a mild or severe case of pregnancy. You either do or you don’t; you either are or you aren’t. There is no degree of Down syndrome, just a wide range of abilities exhibited by people with three twenty-first chromosomes. And really, how is that any different than the wide range of abilities exhibited in the population with two twenty-first chromosomes, i.e., “typical” people?

Yes, my daughter has an extra twenty-first chromosome, which certainly has causal impact on who she is, but my daughter is not ill; she is one of the most robustly healthy children I know. At two-and-a-half years of age, Lyra had never needed antibiotics, never had an ear infection, though she had contracted a reasonable number of snotty-nosed colds. She eats, sleeps and energetically plays. When left to her own devices for even a minute, Lyra gets into cupboards, the dog water bowl and, her personal favorite, the bag of paper to be recycled. Just like any toddler. Furthermore, the Ohio government does not consider Down syndrome to be an illness. Since birth, Lyra has had six eye operations (three on each eye). She wears highly specialized contact lenses (charitably made by Bausch + Lomb who make no profit on her rare lenses) for aphakia, or eyes without natural lenses. Her natural lenses were removed when she was six weeks old to eliminate the cataracts and allow her brain to develop as a sighted person. She sees an ophthalmologist on a regular basis and presumably will do so for the entirety of her life. The Ohio Bureau of Children with Medical Handicaps (BCMH) has helped us with the costs related to Lyra’s vision, but they do not cover any expenses related to Lyra’s Down syndrome specifically because it is a condition that can be remediated with interventions. While I can argue that it is in the state’s best interest to insure that early interventions for children Down syndrome, including physical, occupational and speech therapies, occur regularly and with accredited providers, the state has categorized Down syndrome as a disability, not an illness. While they do provide modest, at-home interventions in the first three years of a child’s life, the state primarily uses the public school system to provide services to children with Down syndrome up to the age of twenty-two.

Re-reading what I wrote two years ago, I see the subtle belief I held that Down syndrome was in essence a form of illness, a false belief that is pervasively held. While undeniably used to withhold the status of full humanity to both men and women, the false application of illness has a particularly misogynistic history. Certainly as far back as the Victorian era, illness has been used to depict an idealized form of an adult female. The consumptive woman with luminously pale skin shown reclining, her limp body nearly lifeless, was a mainstay of fin de siècle art and literature. How better to deny full humanity to half of the population than to enlist its complicity to behave as wan and powerless beings in order to attract the other, dominate, half of the population? Nor did that misogynistic cultural norm disappear as each and every wave of feminism washed over society. Like racism, today misogyny is often hidden from open conversation and behavior, only to be expressed in subtler ways. Seeing Lyra’s full humanity requires overcoming not just perceived medical limitations, but deeply rooted social and cultural perceptions too.

If Lyra is not ill, what is she? In the past two generations, children with Down syndrome are experiencing previously unknown levels of intervention, education and rich social lives. This has resulted in an explosion of new statistics. One of the most dramatic is that life expectancy has increased in the past thirty years from 25 to 61 (and continues to rise). Meanwhile, life for people with Down syndrome is radically different than it was in the 1970s. Today, children with Down syndrome go to school, graduate, and some continue on to college or other post-secondary programs. Many adults with Down syndrome are successfully employed, an ever-increasing number are getting married and even, the most surprising to me, driving cars. Living independently as an adult with Down syndrome is now the norm, not the exception.

IMG_1954So are people with Down syndrome different from the rest of us with just 46 chromosomes? Yes, and no. What I have observed in my own child, who is two-and-a-half years old at this writing, is her development is delayed, but in consistent measure. Due to hypotonia, or low muscle tone, a hallmark condition of Down syndrome that is entirely unrelated to cognitive function, Lyra first sat up when she was ten months old. Her brothers all sat up at about six months. She also crawled, and later walked, when she was a year older than her brothers when they achieved these milestones. Hypotonia can also affect the muscles of the mouth. Not unlike trying to speak after being shot up with Novocain, so too can the speech of some people with Down syndrome be harder to understand. And because people commonly assume that poorly articulated speech signifies low cognitive function, it is important to us that Lyra work with a speech therapist, which she has done since she was three months old. An extroverted child who loves to talk, everyone in our family understands Lyra’s speech while other people understand most of what she says, which, again, is little different than most two-year-olds. As Lyra has acquired, one-by-one, the basic skills of living, my fears about my daughter’s abilities have, in equal measure, begun to dissipate. With time, I have come to see that she will get there—“there” being a fully autonomous person—at her own pace, but she will get there.

Yet no matter the successes of Lyra and others liker her, she lives in a society that overwhelmingly treats Down syndrome as an illness, which many people believe should be avoided at all costs. The pervasiveness of this false belief was driven home in the summer of 2014 when evolutionary biologist and ethicist Richard Dawkins tweeted his response to a mother who had asked him what he thought she should do if she discovered the baby she was carrying had Down syndrome: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later defended his tweet by saying to do so would avoid suffering, revealing his utter lack of knowledge about Down syndrome. Clearly Dawkins not only sees Down syndrome as an illness, but he holds the view that people who have an extra twenty-first chromosome are less than fully human. Exposing the tremendous amount of work that needs to be done to educate, well, basically the world. For if an eminent researcher like Richard Dawkins is unaware of the scientific evidence regarding Down syndrome, it troubles me to think what is required to disseminate these facts within the general population.

And, yet, Dawkins’ ignorant tweet was a gift. The response was thunderous and substantial and, as a result, the controversy that ensued reached people who previously knew little or nothing about Down syndrome. Op-ed pieces appeared in newspapers and bloggers wrote about “The Down Syndrome Advantage,” a phrase coined to describe not anecdotal stories, but the scientific evidence regarding Down syndrome, including the following facts:

  • The divorce rate in families with a child with Down syndrome is lower than in families with a child with other congenital abnormalities and in those with a non-disabled child.
  • In a sibling study, 88 percent of the respondents reported feeling that they themselves were better people for having siblings with Down syndrome.
  • Researchers have found that people with Down syndrome have significantly higher “adaptive” skills than their low I.Q. scores might suggest.
  • 99 percent of people surveyed with Down syndrome (284 respondents), including people who are categorized as “medically fragile,” stated that they were personally happy with their own lives.
  • 96 percent of people surveyed with Down syndrome liked the way they looked.

Before I had Lyra, there were things I planned to do if I ever had a daughter. Unlike my own upbringing, which implicitly stressed marrying a financially successful man over all other considerations, I would urge my daughter to find a career path that brought her joy, a sense of fulfillment and financial security. That making a commitment to someone who is financially successful is fine so long as that person truly loves her and makes her happy. To never let someone tell her she could not do something she wanted to do because she is female. That true beauty is derived from respecting and nourishing our bodies, minds and spirits and not to let anything cripple any part of her beautiful being.

The realization I have come to since the early days after Lyra’s birth is that her diagnoses need not change how I have long planned to raise a daughter because there is little, if anything, that Lyra will not be able to do or have simply because she has an extra twenty-first chromosome. What needs to change is the pervasive and radically false notions about Down syndrome that prevent my daughter, and others with Down syndrome, from being treated as fully human.

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Hiking, Dogs, and Fading Angels

“Oh, Lily, someone else is in our park!” I told my bi-black sheltie after a woman attempting to jog on the icy path startled me from my thoughts. Winter’s grip is finally weakening here in northern Ohio, evidenced by emerging populations. Last week I was awakened by the cheer-eeee of a red-winged blackbird announcing his return, causing me to smile before opening my eyes. Later that day, I did not smile at all as I saw ribbons of tiny ants marching on our kitchen countertops and around the trashcan. The Ant Spring Ball occurring inside our dishwasher was abruptly concluded with what must have seemed to the participants like a previously unpredicted tsunami.

10926241_10152923121570660_93094696278365792_oAnd now the humans have returned to our park. My life thus far contains two constants: hiking and dogs. Our side of Akron is nestled into an expansive county park system that rolls into the even larger Cuyahoga Valley National Park. I have several favorite trails I hike a couple of times a year, including those in O’Neil and Hampton Woods, but day in and day out, I hit the same trail in the same park. And for the better part of three months, when the temperatures are well below freezing, I rarely see another person on the trail, which I curmudgeonly feel is my reward for being undeterred by the cold or as the Germans say, “There is no bad weather, only bad clothing.” A forest muffled by deep snow where even the animals are quiet is a stark reprieve from the sensory clutter of modern life.

I am not as good at getting my butt on my meditation cushion each day as I am at getting my feet on the trail. In sitting meditation the focus is on the breath, training the mind to stay put, both in the moment and in the room, with the practioner. On the cushion, my mind wanders and bolts like a feral mustang refusing to be captured. And while not exactly a trained Clydesdale when hiking, repeating the same steps on the same path over and over I observe the same plants, the same ravines, the same coves and, thus, notice the slightest changes. Lately, I’ve been working on a list of things to stop beating myself up about. One is my poor attendance on the cushion. Instead of I really should sit everyday for at least 15 minutes I now think I am cultivating my mindfulness training with each step I take on my hikes. Check. And carry on.

As I hike the same path, most days I am preoccupied with things that have happened or things I need to do. Somewhere along the way, however, the chatter in my head often stops, if only briefly. Creatures capture my attention, be they large deer springing up the hillside, their white tails bopping with each leap, worms coating the leaves after a fall rain or those intrepid little spiders on the vast slicks of ice. And for a moment, I am in the moment. And that is all there is.

The first two months of this year, the mercury never rose above freezing. Each of the many deliveries of snow was stacked upon the previous one. I start my hikes by crossing an open field, which was easier when I could find my boot prints from the previous day. But many times either new snow had filled up my prints or the wind had covered them over. Like walking through wet concrete, trailblazing in knee-deep snow is hard work. “Yeah, but you get a better work out,” I’d hear in my head. It was the voice of my eldest son, Claude, a distance runner, who accordingly dismissed my complaints on a hike several winters ago.

Fading AngelsOn the weekends, Max joins me and my hikes are different because we talk. But as the snow grew deeper and deeper, the trail narrowed like a river valley, forcing us to march one-by-one and speak less. In late January, in the middle of the open field, Max stopped, turned and threw himself back onto the soft, fresh snow. Sliding his arms up and down and his legs in and out, he made a snow angel. With temperatures struggling to reach 20 degrees, his snow angel lasted for weeks. Every few days I photographed the outline as it became muted, while the peaks pushed up by his arm movements rounded into what looked like the globes of a soft bosom. When most sections of the angel’s outline finally disappeared, only I recognized the few remaining ripples in the otherwise flat snowscape as lingering evidence of my man’s body.

Yesterday, the fourth day in of our first thaw in months, the snow had compressed down in the daily melt, which then hardened into ice at night. But as I had all winter, before starting my hike, I slipped over the soles of my boots the unfortunately named “crampons.” A slipper’s skeleton made of silicon, crampons suddenly make any shoe or boot like the adult punch at a holiday party: spiked. Helpful all winter, right now they are essential. Without them, going down the ice-slick hills would be dangerous while going up them would be impossible. And yet, ice be damned, spring is certainly coming for the spiders have joined me, as they always do in early spring, on the frozen trail, their dark, spindly bodies high-contrast and out of context on the snow banks. I wonder where they erupt from as the ground is still seemingly sealed in the white snow and grey ice as though restricting for just a little bit longer the advent of mud season, when I will also need my crampons to keep from sliding into ravines.

I used to bring both our shelties, Hoover and Lily, with me on my hikes, but stopped the year we moved into our house. It was a wet summer and the long hair of the dogs, who resemble small collies, would get so muddy I had to bathe them, or at least hose them off, when we got home. Besides, at about an acre, our back yard is big enough that the dogs seemed to get plenty of exercise chasing each other and the squirrels. Then this past November Hoover nearly died from pancreatitis and though, at nearly 14 years old, his recovery was remarkable (thank you Metropolitan Veterinary Hospital), Hoover’s energy has not fully returned. He has instead slid into his old dog days, preferring sleep to all else other than food and affection. While that’s fine for Hoover, Lily is only four and not at all interested in a geriatric lifestyle. And so Lily has joined me and for the better part of the past three months, and on most days she and I have had the park all to ourselves. For Hoover’s sake, I sneak Lily into the car, which is not terribly hard. The silver lining of Hoover’s now near-complete deafness is that he does not hear me call for Lily when we leave, so there are no hard feelings.

Before Lily, there was Greta, a shepherd mix who loved best of all long hikes. Unlike the shelties, Greta hunted on our hikes. When she was young, she could pick off a squirrel or chipmunk running up the side of a tree and shake it dead before I could even holler for her to stop. Even when she was past her prime and no longer a rodent-killing machine, Greta followed along on hikes, darting after creatures then returning to me over and again. As the years passed, our hikes became walks as Greta moved more slowly. At the end of my daily hike is a steep hill and one summer as I slowly made my way up I noticed only Hoover was with me. Turning to call her, I saw that Greta had lain down on the trail a good 25 yards behind me. I called her and she looked at me. She was a smart dog and if you have ever had a truly smart dog, you know they look at you differently than other dogs do; they look at you knowingly. I hiked down to Greta and helped her up. She ambled a few paces before dropping back to the ground. Not as heavy as she’d been in her prime, she was still easily 40 pounds. I picked her up like a calf, my arms around the tops of her four legs, her body on my chest. I walked as far as I could and set her down, she walked as far as she could and then I picked her back up. We repeated our turns until we crested the hill. Though she lived another year that was her last big hike. From then on, Hoover alone went with me. And now he is the old one, staying home on his bed in the kitchen, happy in the warm fray of the family.

While spring, of all seasons, heralds birth and beginnings, death never withdraws. For one thing, as the temperatures rise and the snow melts, all the carcasses created in the winter thaw too, a dog’s delight. Until Greta was so old she no longer darted off, I kept her on leash for weeks after the big thaw began, lest she come back smelling of carrion. People also die and on the second day of spring a few years back when the peepers were in high concert season, I received a text message that a friend had succumbed to cancer the day before. The death of that friend, whose youngest children are twins just three years older than Claude, seems to be the first of many people around my age to die at the hand of the Emperor of All Maladies. Tomorrow my son Jules, who is fourteen, and I will be attending the funeral of a classmate’s mother, the second parent in his small Waldorf class to die of cancer. His classmate is the oldest of five children. As a Buddhist, I have no god to rail against for the existence of cancer and its affliction of people who have so much life left to live. And even if I did, what would that change?

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Where There Is Love

“I don’t buy cartoons for Valentine’s, you know that,” I said, standing in the kitchen. Hugo snatched up my hands in his and lifted them up as though he were going to kiss my fingers. Instead, he began running in place, giving my hands little squeezes to punctuate his points.

“No, but wait, wait, The Book of Life is both a love story and a musical. And…it’s really, really good, and you loved it too!” he said in the little-kid voice he uses when he wants something from me. “Please, please, please? Oh, and, uh, guess who’s never seen it? Go ahead, guess!”

“Oh, that poor girl,” I said knowing exactly whom he meant, “What has she seen? Anything?”

“Nope, nothing important. Not until me.”

Hugo, who might categorize such things with different criteria, is in his first serious relationship. Soon after he and his young lady became an item last fall, Hugo started steadily showing her all his favorite movies, many of them past Valentine’s gifts, including Across the Universe, Seven Brides for Seven Brothers, and last year’s mold-breaker (because it’s not a musical but, oh, so wonderful), About Time.

I took Hugo’s argument under serious consideration, as I have in the past, but perhaps more so this year. For next year, with any luck, Hugo will not be here; he will be off at college training his already lovely baritone to perform on professional stages. Yes, our Valentine’s tradition of giving the kids a DVD of a (usually classic Hollywood) musical will continue and, as has been the case with his older brother, Claude, I am sure Hugo will return home each year and view the latest love story. But it’s different when they are living mostly away at school and this one, Hugo, particularly needs to go to a college somewhere far enough away that he can’t pop over and do his laundry on the weekends. Or beg me to do it for him.

Time Turns

IMG_1955But it is not only Hugo who will transition this year. Max and I try to find ways to bind our two little children’s experiences with those of the big boys, which isn’t always easy given the nine-year gap between Jules, the third child and Leif, the fourth. That is why we decided, among other reasons, to send Leif to the Waldorf school when he was three (and had finally potty trained), the earliest the school accepts preschoolers. For two years, Leif and Jules have been schoolmates, sharing the same rituals and traditions, including making Valentines for all their classmates and teachers.

Jules was six months old when I first enrolled Claude and Hugo at the Waldorf school in January of 2001 and we began making the 70-mile round trip drive from our home in downtown Cleveland to the school, doing so for three school years before moving to Akron. Rather than drive 140 miles each day by going home and returning, I stayed in Akron most days, often volunteering at the school. With Jules in a baby backpack, I helped prepare and serve the once-a-week hot lunch. When he was older and could walk and follow instructions, toddler Jules was my assistant, passing out napkins and silverware to the “big kids” in the preschool/kindergarten class.

At our Waldorf school the students stay with the same teacher from grades one through eight. Now in the eighth grade, Jules and all his classmates have been together since kindergarten, the only exception being a child who joined them at the beginning of first grade. Next year, as we do not have a Waldorf high school, these kids will enroll in at least five different schools with only one child possibly joining Jules at Firestone High School. Rather than making his Valentines as he has always done, this year Jules bought a box of notecards. He wanted to write something to each of his classmates because Jules has recognized, somewhat suddenly with this sweet holiday, that a large part of his childhood, really his entire life thus far, is formally ending.

Knowing When Love Is Real

There I was, all last fall I telling Hugo, Research schools and apply now. I cajoled him, Just think of all the cool places you could go next year! I explained ad infinitum the benefits, If you start applying now we can have this all done by winter break! And I threatened punishment if he did not apply to some freaking colleges already, with absolutely no results. Then, in late November, his vocal coach told him to apply to the Eastman School of Music. For those of you who don’t know, like me until a few months ago, the Eastman School of Music is on the same level as music schools such as Oberlin, Indiana University, and Juilliard; it’s a “reach” school. Yet once some other, non-related, adult told Hugo to apply to this vaunted college, he was like, “Oh, sure, no problem, I’ll get right on that.” Thanksgiving weekend, while the rest of us were with Grandma and Grandpa in northern Michigan, Hugo stayed home and recorded a DVD with the help of his vocal instructor, filled out the application, wrote the essays and sent it all off to Eastman. A month later, we learned he had passed the pre-screening and was invited to audition. And somehow this also inspired Hugo to go ahead and apply to five more schools over the holiday break. Note to self: This boy always pulls important stuff out of his butt last minute. Your adrenal glands will thank you for not worrying next time he procrastinates.

I drove Hugo to Rochester the night before the audition in the midst of a severe snowstorm. With much of Interstate-90 down to one lane, I stayed behind semi-trucks when I could because, in the rapidly accumulating snow, they laid down a set of tire tracks I could follow. What should have been a four-hour drive took more than six even though we did not stop once until we arrived at our hotel. In the quiet disorder of the unplowed parking lot, the cars looked tumbled about as though tossed like fistfuls of dice. I stepped out of the driver’s seat of our car and when I pushed on my spine and twisted, it sounded like someone opening a tent’s heavy-gauge zipper.

“Look,” I told Hugo while we were still driving through Pennsylvania, “It’s a long shot, both getting into Eastman and getting the money we’d need. But here’s the thing, it’s your first audition, so you can tell the rest of the schools that you auditioned at Eastman and they’ll know that meant you made it through the pre-screening. And besides, it’s good practice auditioning at a place like that.”

The next morning, the drive to the audition was as dismal as the night before. Snow still fell heavily and we were running late. Two minutes after I pulled onto the freeway outer belt surrounding Rochester, a cop pulled me over. And gave me a ticket. The Eastman School of Music fully occupies one city block in downtown Rochester. I pulled up to the main entrance and Hugo jumped out of the car. The moment he walked into the auditorium, he told me later, the dean of the school began speaking. By the time I had parked the car, walked over and found Hugo, the dean was gone, replaced on stage by a jazz quartet. When they stopped playing, the applicants were separated from their parents.

When did we each first feel it? I can’t say. Maybe immediately. Certainly when we met for coffee an hour after he had left the auditorium with the other students. Eastman is the place for Hugo. Nowhere else have I ever seen this boy—the one who daily pounded on the window of his daycare while sobbing when I dropped him off, who was horribly misfit in his Waldorf class only to feel abandoned when he transferred to our city’s public middle school for the arts and who eagerly wants to be done with high school—completely in his element. And although he was giddy, he remained centered, if not surprisingly relaxed, when his ability to read music was tested and faculty members interviewed him. More excited than nervous, Hugo took me with him to warm up in a small soundproof room with a piano. I rubbed his neck and shoulders and listened to him go through the three pieces he’d prepared. Then we waited in the green room.

“Can I see him perform?” I asked a graduate student after Hugo had been led onstage.

“No, but you can hear him through the crack between those doors,” he told me, pointing to a set of doors that were an exit from the first row of the auditorium. I pressed my ear to the crack only to jump back when the woman who had introduced Hugo pushed the door open on her way back to the green room. And for a brief moment, seconds only, I saw Hugo onstage, smiling and singing as if there was nothing he would rather be doing, which, on any day, there isn’t. How did he do? If he does not get into Eastman, then it was not meant to be for there is nothing he could have done better at any moment that day.

And This Year’s Movie Is…

Each year before purchasing my Valentine movie for the boys, I check for a film I love so much I have (without their knowledge) never let them see the more famous remake. And while I have a few, this film stars one of my all-time favorite actresses, Irene Dunne. She of crackling wit with Cary Grant in the films The Awful Truth and My Favorite Wife, both of which are said to have been largely improvised. Not a comedy, however, the movie I have sought for years, with no luck, as it remained unavailable on video or DVD, is the epic musical, Show Boat.

poster-show-boat-1936_01-1A success on Broadway, the Kern and Hammerstein musical boldly deals with issues of race, who can legally marry, and single-motherhood and is as timely today as when it was released in 1936. Reviving the role she played on Broadway, Helen Morgan, with her dusky voice, plays the “passing as white,” mixed-race star of the show boat. Morgan’s own life was no less tragic than that of her most memorable role and she died of cirrhosis five years after the film was released. But if that is not enough to invite anyone to watch this early film version of Show Boat, the chance to listen to actor Paul Robeson sing “Ol’ Man River” should be enough. Unfortunately, for a number of reasons, including Paul Robeson being blacklisted for his affiliation with communism, the original Show Boat was entirely unavailable from 1940 until 1983. I have only seen it twice myself at special showings in repertory theaters, the last time being many years ago. But with love comes faith and as I again looked up this film last week on Amazon, I hooted with delight to find it is now available on DVD. I ordered it immediately.

Not only to please Hugo, my next fledgling, I also ordered The Book of Life for even though this Guillermo del Toro production is a cartoon, like last year’s film, it is as much a movie about the love of family, friends, and place as it is about lovers.

Now, please, go find someone to hug. Or watch movies. Or both. Happy Valentine’s Day!

 

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Two Years This Daughter

 

The first two years with a baby with Down syndrome are a lot of work, but then it all gets easier.

I have repeated that sentence, spoken by the caseworker from our county’s DD Board when Lyra was only a few months old, many times over in my thoughts. Lyra turned two years old in August of last year, and for the past six months, I have considered where Lyra is now, and also how our family has transitioned and developed with this fifth child, our only daughter who has Down syndrome.

Yet I have struggled in my attempts to write about this pivotal place where we find ourselves after long anticipation. Two months ago, I wrote “Two Years This Family” intending to immediately follow that essay with “Two Years This Daughter.” And I tried, writing two lengthy drafts that I promptly shelved. Instead, I found more enjoyment writing other pieces, which are also about Lyra, the reality of Down syndrome today and how our society, by in large, remains misguided in its understanding and treatment of people with Down syndrome. Those essays, like all my writing, did not come easily, but were the products of days spent at my desk, writing and re-writing until my brain, as it does after a long day of writing, would buzz like a nest of agitated hornets. That’s when I know to step away from my computer, consider a shower and head out for a long hike. A missing sentence or section or elusive phrasing will sift up, time and again, when I am deep in the woods, breathing hard as I hike up the hills of a two-mile trail in the metropark near our house, not concentrating, but lightly holding the piece of writing, as though it were floating like a cartoonist’s thought bubble, just above my head. It was good, hard work, resulting in essays that I submitted for publication rather than post on Whoopsie Piggle.

The problem with my previous attempts to write about Lyra at the age of two is the essays were boring to write and, thus, boring to read. It is my job, as a writer, to make the material engaging. But describing therapy sessions that began, in the case of speech, when Lyra was a few months old became a dry litany in my hands: we did this, and then this, and some more of this with a little added that, until here we are today, still doing some of the same, but not all the same and trying out some other things as well. Let’s skip the process for now and get to the results:

  • Lyra walks and
  • She talks and
  • She feeds herself and
  • She plays with toys, but more often disappears in the house and takes everything out of any cupboard, dresser drawer or laundry basket she finds within her reach that has been left unsecured. “I see it has been raining baby clothes,” Max says after Lyra has shoved, yet again, several of her shirts or Leif’s pants through the railings of the balustrade on the second floor of our home. Clean clothes purloined from the dressers in the adjacent bedrooms only to be flung onto carpeting coated in cat hair. Thanks, kids.

Yes, Lyra’s acquisition of early childhood milestones came later than for most typical children. But not all that much later and now, at two and a half, Lyra is pretty much like any two-year-old.

The difference lies less with our daughter than with us, which is what Lyra’s caseworker meant by “a lot of work.” Before Lyra, I had never broken down the mechanics of a baby learning to hold up her head, sit up, crawl or walk (gross motor skills). Neither had I considered that my babies picked things up by first using their fingers as rakes and later developing a precision pincer grip with their forefingers and thumbs (fine motor skills). Nor had I worked to train a baby’s tongue to move into the mouth and not rest on his lips (important for speech). I know how to drive a car even though I don’t know the first thing about the mechanics of automobiles. Similarly, I have long understood how to raise small children but my focus was on behavior and education, not how their little bodies went from infant blobs to motoring and motor-mouthed toddlers. They took care of that part of development themselves.

This begs the question, for me at least, how would Lyra have developed without interventions? I have no doubt that she would have learned to sit up, crawl and walk, but perhaps later. More importantly, I believe many of the interventions have helped Lyra learn how to move and use her body correctly, minimizing any overcompensation for her low muscle tone, or hypotonia, a hallmark complication of Down syndrome. And as a socially extroverted child, there is no question Lyra would be talking even if she had not had any speech therapy. However, she would be harder to understand. That is because we have spent over two years helping strengthen Lyra’s tongue and train it to stay, for the most part, in her mouth. The importance of tongue placement for speech was explained to us by Talk Tools founder and speech therapist, Sara Rosenfeld-Johnson, at the 2013 National Down Syndrome Congress convention. She told the audience to sit back in their chairs and lift up both legs so that they were parallel to the floor. She then asked us to move our legs, in tandem, from side to side, around in circles, up and down. After that, she asked us to scoot forward on our seats and try to do the same thing with our legs. What was simple when sitting back was nearly impossible when sitting on the edge of our seats. The same is true with tongues and speech. When positioned on the lips, a tongue is far harder to control and speech less precise than when a tongue is positioned inside the mouth.

There are many subtopics and nuances to Lyra’s interventions, such as the significance of music in Lyra’s learning or long-term breast feeding, that are important, sure, but those are perhaps best described in separate essays.

I wish I had worried less about the person my child would become and just enjoyed the baby she was.

I also regularly think of this quote, which I included in the essay, “Learning About Lyra,” more than two years ago. When I first read those words, just weeks after Lyra’s birth, in a book about children with Down syndrome, I knew I should do just that—stop worrying. And I also knew I could not. I had never had a child with Down syndrome. Before Lyra, I knew only one other child with Down syndrome, the daughter of an acquaintance, whom I met once, when she was a baby. After Lyra’s birth, I began to meet other families in the area through our local support group, The Upside of Downs. But equally as helpful has been a closed Facebook group for mothers of children with Down syndrome who were born the same year as Lyra. These support groups helped in the early days as we learned what we could expect for our daughter both immediately and as an adult. Yet I would be lying if I said I have not found myself, on occasion, comparing Lyra to other babies with Down syndrome who acquired developmental milestones before she did.

It turns out what has most helped me to stop worrying about Lyra is Lyra herself. As she moved out of infancy, her personality revealed itself, as any baby’s does. She’s an outgoing, curious child who loves music, dogs, cats and her brothers. Five-year-old Leif now complains that Lyra tackles him and all too often Lyra yells when he pries toys or cookies out of her hands. It’s no different than the way my first two children interacted when they were five and two.

Lyra, my youngest child, is my girl. And she’s Max’s girl. She’s her brothers’ sister and a friend to her mates at daycare. Two years after her birth, all that Lyra is has normalized. Her Down syndrome, her aphakia and contact lenses are no longer novel to us. Just as having a fifth child who is a daughter (a daughter!) has become routine. (Okay, so maybe the daughter part still tickles me like getting a long-desired present.) The point is we are a family of seven, each of us having different personalities and abilities. Claude, who is quiet and steady except when he’s excited, now writes fiction with content more intense than expected from someone so young. Hugo is confident, if not self-absorbed, demonstrably affectionate and sings like an angel. Jules, whose name means youthful, has the oldest soul of us all. He cares for everyone and everything while quietly carrying deep hurts and anger. Leif is like Hugo: bombastic, demanding and sharp-witted. Max, with his implacable patience, may have missed out on the thing he does so well, being a dad, had we not tumbled into his life when he was in his early forties. And I, who spent much of my childhood alone and lonely, never lack for company. Or love. (Could we queue in a little Sister Sledge here, please? You know the tune.)

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Two Years This Family

Two years ago, I wrote about our Thanksgiving with family in northern Michigan. As has been the case for more years than I can remember, last month we again made our biennial pilgrimage up the mitten-shaped state, our van loaded with children, a dog, a fresh-killed organic turkey, presents and everything else needed for the long weekend. Usually, it hardly seems as if two years have gone by since we all sat down to our favorite meal ever: Grandma Liane’s holiday spread. But not this year.

Much has changed in these past two years, particularly because of Lyra. Two Thanksgivings ago, she was still a freshly made person on this planet. Born in August of 2012, we were all still readjusting to the new family order. And really, more than Lyra being our only daughter, and perhaps even more than her diagnosis of Down syndrome, having five children radically changed life as Max and I knew it. In the past two years, several of my essays have described our struggle to find balance and calm, but only recently have we had the perspective to realize why our equilibrium feels constantly challenged: Parenting five children, unlike four, kicks our butts. If our home were a dollhouse with the back wall removed, those who peered inside would find a house as full of frantic activity as any Keystone Cops film, with a commensurate amount of efficiency. But just as the slapstick cops of the silent film era eventually managed to get where they needed to be, so too have we continued to find our children (if not always ourselves) fairly functional, one even fledging.

Besides little Lyra, the person who has changed the most in the past two years is the eldest child. In the fall of 2012, Claude was a freshman at the School of Art and Design at the University of Michigan. That October, he eagerly returned home for autumn break. Orange bled pink in the late afternoon sky that silhouetted Claude’s profile as he sat in the passenger seat on the drive back to Ohio, questioning out loud his choices. Months later, Claude determined he was just in the wrong major, but those first few months of college, he felt vaulted into an existential crisis. That he felt pressured was not unreasonable, the university was receiving nearly $50,000 a year, largely paid by scholarships, grants and loans, for Claude to be there and he was not sure it was worth it.

IMG_1565The experience echoed his kindergarten year when my bright little boy hated school because, as we later learned, he was severely dyslexic. But just as remediating his learning disability cured his academic low self-esteem in grade school, after switching to the College of Literature, Arts and Sciences at the University of Michigan, Claude eventually felt he was were he belonged. Initially resistant to becoming an English major because, as he told me, he didn’t want to do what his parents did, he’s no longer much interested in anything else. Unlike me, however, his focus is poetry (I have an M.F.A. in creative writing, but then again, Max has his Ph.D. in English Renaissance poetry). While what he does with his life is still an unfolding story, Claude came to Thanksgiving this year looking more like a person comfortable in his own skin than I have ever known him to be. He also came in his girlfriend’s car. And, yes, she came too. He tells me that he and his girl might not go home for the summer this year, they may stay at the co-op where they both live, and work on things that are harder to do during the regular school year. My boy, a man now, who was so unsure of his life two years ago, isn’t launching. He’s launched.

Next to launch, hopefully, will be Hugo. Every year, either Hugo’s birthday or mine falls on Thanksgiving weekend. Our birthdays are exactly one week apart and at the end of November. Two years ago, Hugo turned 16 the Friday after Thanksgiving and we spent the day driving home because the Saturday after Thanksgiving Hugo was scheduled at his then-job, grooming dogs at a canine salon (read: washing scared, furry creatures who frequently bit and defecated on said “groomer”). Even though nobody wanted to leave Grandma’s that soon and the only reason we did so was to get him to his job, Hugo was disappointed at how his sixteenth birthday turned out and he sulked about it. For several months. So last year, in order to acknowledge Hugo’s feelings, however misplaced, we took the entire family to Kalahari, a ginormous indoor water park, the night before and the night of Thanksgiving. For three months, all the big boys talked about how excited they were with this plan. We had over two days of aquatic fun (though, honestly, I would rather have been in the toilet bowl ride with the biggins’ than in the kiddie pool with the babies) and a Thanksgiving meal that, while not as good as Grandma Liane’s, was pretty spectacular with all the traditional dishes plus a prime rib carving station and tables of desserts that would make Willy Wonka drool. Then, on the morning we were packing to leave, Hugo told us, “You know, I realize I’ve pretty much outgrown water parks.” Oh, that kid.

Lily & Hoover, 2012

Lily & Hoover, 2012

This year, we left him at home. No, not to punish him. His vocal instructor strongly encouraged him to apply to a specific music school, which had a December 1 deadline. While we were working our way into food comas in Michigan, Hugo was videotaping three songs for his pre-screening, filing out the application and writing the essays. We left our younger dog, Lily, with Hugo to keep him company. Our older dog, Hoover, however, went with us. Of all the dogs I have had in my adult life, it is only Hoover who has indiscriminately loved everyone he meets. “Boy, your dog sure does like me,” is a refrain we have heard countless times from innumerable mouths. Not pesky, Hoover walks slowly up to each guest, wagging his tail in greeting. If a guest is seated in our house, Hoover will lie by his or her feet, not requiring anything, but always grateful for a scratch of the head or belly. Last month we thought our sweetheart Sheltie was dying of kidney failure. Then, after nearly 72 hours of IV fluids and penicillin, Hoover made a marked recovery from what is now believed to have been pancreatitis. Still, the day we left for Grandma’s house, Hoover had yet another full week of antibiotics to take and, let’s face it, my confidence that Hugo would consistently remember to give the dog his pills was non-existent. Besides, from now until the day he takes his last breath, which at over 13 years old could be any day, Hoover is on the deluxe pampering plan. I frequently imagine, unfairly, I’m sure, that Hoover is milking his recent medical crisis: You know, I’m a sweet, but old, old dog. I could go at any time. Those scraps on your plate might be the last I taste. Rub my belly today, for tomorrow I may die. Well, even if he is milking it, nobody minds spoiling the old boy, who was loved up by many hands all the holiday weekend long.

Two years ago, my essay on Thanksgiving considered the constituent ingredients of family, blood not necessarily being one of them. Cooking in two kitchens in side-by-side houses, which really is one of the best ways to have all the dishes of a good Thanksgiving spread come together at once, Leif and Jules traipsed back and forth collecting and delivering whatever ingredients were needed at the other kitchen. Other than these errands and the big dinner itself, I hardly saw Leif. Unlike his older brothers, all of whom clung to me like marsupial offspring until they were in grade school, Leif’s independence is at once surprising and refreshing. Perhaps it is because he was only five weeks old when we first packed him off to daycare three days a week so I could finish my master’s thesis. Or maybe having so many older brothers, who all seem like adults from Leif’s perspective, along with a father who parents all the children as much as I do, his needs are always tended whether or not I am available. Or it may just be the way he came into the world. Whatever it is, Leif abandoned us in the guesthouse and remained his Grandma’s constant companion, both day and night, for the entire weekend. I am not sure who this pleased more: Max and me for a lessened load of child duty, Leif for the indulgent treatment his grandma gave him (we, who have no cable TV, found her serving him hot breakfast on a TV tray while he sat in Grandpa’s recliner, watching cartoons), or Grandma who loves nothing more than to take care of someone, especially if they are little and a little difficult, both categories to which Leif qualifies.

In ways I had not yet considered two years ago, I see the transitory beauty of family. More people will be welcomed into our eccentric complexity, which may be unique in substance, but no less eccentric or complex than most families. From time to time, one or another of us will ask or be asked, and may choose, to formalize our relationships to one another, as recently was asked of me. No, not what you might be thinking. Max and I are content with our arrangement.

“I want to ask you to consider doing something before I die that I have wanted to do for over forty-five years,” said my stepmom.

“Wow, now there’s a way to set up a question!” I said, laughing. Although she giggled at my comment, when she next spoke I thought my stepmother, who came into my life shortly after my third birthday, sounded a little nervous.

“Would you consider letting me legally adopt you as my daughter?” she asked.

Of course.

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Correction: Older Moms Are Having More Babies. Period.

In the essay I posted yesterday, “Some Words About Down Syndrome,” I referred to the long-cited statistic that while older mothers have a higher chance of becoming pregnant with a baby with Down syndrome, most children with Down syndrome are born to younger mothers because the majority of babies are born to women in their 20s and 30s. While this was certainly true up until recently, the tide has changed. Since the 1970s, presumably as more women pursue advanced degrees and careers, so too have they postponed childbirth. Now, it seems, the numbers have tipped. Women having children over the age of 35 has skyrocketed, having tripled between the years 1975 to 2000, and this 35+ age group now has slightly more than 50% of the pregnancies of a child with Down syndrome. But, as has been brought up in previous essays, younger moms are slightly less likely to abort a fetus diagnosed with Down syndrome than older moms. This fact leads me to suspect younger moms are still having more babies with Down syndrome that older chicas like me, but I do not have any statistics, one way or the other, on live births.

This interest fact was pointed out to me this morning by Mark Leach, whose blog, “Down Syndrome Prenatal Testing,” is one I regularly rely on for accurate statistics and information. The link provided here will take you to his article on the change in maternal statistics in the past 40 years. I highly recommend to anyone interested in issues related to Down syndrome and the ethical concerns surrounding prenatal testing to visit his blog.

This correction underscores the point of yesterday’s essay: There is always more to learn.

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A Few Words About Down Syndrome

lyrarword1Dear Young Mamas of Children with Down Syndrome:

As you all probably know, it is more likely for a woman my age (46 when I had my daughter Lyra) to have a baby with Down syndrome than it is for those of you in your twenties or thirties. But because more women are having babies in their twenties and thirties than in their forties, most children with Down syndrome are born to you younger mamas (even now as more women in their forties are having babies than ever before). This explains why I have so many Facebook friends who are ten, fifteen, twenty or more years younger than me. We are all mothers of little ones with Down syndrome.

You younger mamas inspire me. In the two years since my daughter Lyra was born, many of you have created non-profits with valiant missions: to educate medical professionals about Down syndrome, to support families who have children with Down syndrome, to reach out and help families with medically fragile children both with and without Down syndrome. But mostly you mamas ask questions of each other, using this tool of your generation, the Internet, to find support and guidance as we all navigate the stages and attendant issues of raising children with Down syndrome.

Your passion for your children reverberates in your posts and pictures. Any one of you would bare-knuckle your way up weather-worn peaks or ford valley rivers rushing with spring snow melts to find what your children need and implement what you’ve determined makes sense for them and your families. You also get mad, furious sometimes, when someone says something that seems, if not hurtful, then downright tone deaf. And, yet, time and again, you calmly respond to comments and questions that I know upset you. You give accurate information but, more importantly, you share your stories and the stories of your children. And in these exchanges, as much as it may sound like hyperbole, you are changing the world for our children.

I, as a mother of a child with Down syndrome, am guilty of saying the very things that so upset you and I offer you not an excuse, but an explanation. You are right, language is very important. I raised all of my children to know that there are police officers, fire fighters and mail carriers even though I did not grow up in an environment that was thoughtful about much of anything, let alone language. As a young woman, particularly after I finally enrolled in college at age 21, I recognized the subtle, yet potent, harm caused by sexist language and eschewed it from my own speech. In my twenties, I caught on quickly.  All people, regardless of gender, race, religious beliefs, sexual orientation, national origin or age, should be treated as the full human beings they are and given equal opportunities to participate in society. That they are not has motivated most, if not all, of my political activism for nearly 30 years. Yet a fool I may well be because until I was 46 and held my infant daughter, I had not considered language as it relates to Down syndrome. It had to be directly pointed out to me.

12096046_1018159554872799_1299163800322496535_nThe first or second time I met with our local support group, I recall stopping myself as I said to the coordinator “Down syndrome child.” I apologized and she graciously told me not to worry. People-first language, i.e. a person who has Down syndrome as opposed to a Down syndrome person, is so easy to understand. However, this took a few weeks for me to consistently remember and apply a simple turn of a phrase that identified my daughter as a person, not her condition. Lyra was probably three months old before I had habituated people-first language in my speech.

A few months after Lyra was born I wrote the essay, “Learning About Lyra,” describing how we learned of her diagnosis only after she was born. I reread my essay a few months ago and realized I had used the word “healthy” in opposition to a Down syndrome diagnosis. Lyra, thankfully, is one of the most robustly healthy babies I know. To confuse a diagnosis of Down syndrome with poor health is incorrect. But books and articles concerning pregnancy and childbirth still make that mistake. You young mamas recently rallied a national parenting magazine to remove language from an article that referred to expectant mothers “wishing for a healthy baby but maybe having one with Down syndrome.” Lyra taught me, simply by being the baby in our house, that the word “healthy” used in opposition to Down syndrome makes no sense, which is why I removed it from my essay.

But because the essays in Whoopsie Piggle are about our journey, I did not remove from that essay my covert wish in the first days of Lyra’s life that she test positive for mosaic Down syndrome because of the possibility of “milder symptoms.” It’s a simple phrase that most people wouldn’t notice, but one I would not use today because, again, it connotes illness. I might instead state that my desire for mosaic Downs was implanted by the hope that, in the wide range of abilities children with Down syndrome have, my child would have the highest level of abilities possible. Part of that was my very real grief at the diagnosis, a grief most parents go through only to discover the child they have is perfect because he or she is a real child who is as lovable and as frustrating as any other child.

“Milder symptoms” is a legacy of the terms “mildly retarded” or “severely retarded” and, as harsh as those words sound in our ears today, they were once widely used phrases, certainly as I was growing up and, notably, in much of my adulthood. Consider, for example, that until 1992, The Arc, one of the oldest American organizations supporting parents of children with Down syndrome as well as the children themselves, had the word “retarded” as part of its name. Their website has a thoughtful explanation of how their name changed over time and why it no longer includes the word “retarded.” Closer to home, it was just five years ago, in October of 2009, that the State of Ohio and all its counties were required to remove the word “mental retardation” from any governmental agency or board. Around the City of Akron, billboards went up stating that Summit County MRDD was becoming Summit County DD. That was just five years ago.

If you are 25 years old, five years is pretty much all of your adult life. But at nearly 50 years old, well, things that happened five years ago seem on par with things that happened last month, it’s all so recent. I cannot recall when I no longer thought it was acceptable to refer to a person with Down syndrome as “retarded,” and assume it was after my dad and stepmom began working in a group home in the 1980s. But it wasn’t until a few months after Lyra’s birth, while listening to a performance by comedian Rob Snow  at an event for new parents of children with Down syndrome, that I understood that the word “retarded” is an unacceptable pejorative in any sentence. Again, once pointed out, I absolutely agreed. However, as embarrassing as it is, I have since caught myself on two occasions saying “retarded,” once referring to a cash register where I work and the second time referring to myself when talking with, of all people, Lyra’s occupational therapist. When I did, I immediately slapped my hand over my mouth in horror as though I’d just burped up a vile part of myself. Please, understand, young mamas, rewiring brain pathways is a process, especially the older and more calcified the brain. Yes, I believe everyone needs to recognize the hurtfulness of this and other derogatory words and make every effort to change and all of us can do so—it’s just that some of us have to unlearn habits that younger folks thankfully never learned.

So back to those people who use inappropriate words to talk about Down syndrome or your child. If they are asking questions with earnest curiosity, please continue to listen to the heartfelt intentions over the deeply flawed words. For those of us over forty, few of us had positive opportunities to know people with Down syndrome when we were growing up. If we ask a sincere question with clumsy or even hurtful words, gently point out to us how other words are more precise and not hurtful.

Sometimes all you need to do is listen.

There is a woman who is very important in our lives. Just a year older than I am, she tells me Lyra was put in her life to teach her about Down syndrome. “There was this mongoloid boy in my neighborhood,” our friend said to me when Lyra was still an infant. She then paused and looked over at me uncomfortably, “that’s what we called him.” She had brought him up to tell me a story about finding him alone, at age three, sitting on the street curb, partially dressed. She had not thought of him in years, perhaps even decades. But when she spoke of him, the word she had always used for that boy popped out, as though attached by mortar. I did not have to tell her the the once commonplace word “mongoloid” was wrong both for people with Down syndrome and people from Central Asia. When she heard the word come out of her mouth, I did not have to say a word. In an instant our friend witnessed for herself that word’s impropriety and knew she would never abide anyone calling Lyra “a mongoloid girl.”

More recently this same woman told me, “When I was in college, I worked with these young women who were retarded, they didn’t have Down syndrome, but they were, you know,” and she paused, not knowing how else to describe the condition these women had, before awkwardly saying, “retarded.” She was in tears recalling how these women had been treated. I told her the women were what we now call developmentally disabled, and she said, “Oh! Okay, developmentally disabled.” Our friend does not tell me these stories in order for me to correct her language, she tells me because in knowing and loving Lyra, she sees how unfairly people were treated whom she knew decades ago. And that she bore witness to their treatment and did nothing about it is cringingly painful to her, even though her complacency was based upon her understanding at the time. She did not know what she knows now. Motivated by a compassionate curiosity to discuss Down syndrome using the only language she had known, our conversations have changed the words she uses just as knowing Lyra has changed her understanding of Down syndrome.

The hardest comment to respond to is, in my opinion, They are all so sweet, these children with Down syndrome. This monolithic categorization is a stereotype that denies the full range of human emotions, as well as the expression of those emotions, in people with Down syndrome. And while it is statistically true that higher percentages of people with Down syndrome claim being happier with their lives than the typical population, calling them “all so sweet” is simply a stereotype. What happens when someone does not behave in accordance with the stereotype they have been labelled by the dominant members of society? In January of 2013,  three sheriff’s deputies in Maryland brutally murdered 26-year-old Ethan Saylor over a movie ticket when he did not behave like a “sweet man with Down syndrome.” But now I am just preaching to the choir. You mamas know this story, and too many others like it. It is our shared fear that one day this and other widely held misconceptions of what it means to have Down syndrome will cause our children to suffer and possibly irrevocable harm.

NPR’s Ted Radio Hour had an installment on stereotypes in which the last two pieces, while both about racial stereotypes, could just as easily have been about Down syndrome stereotypes. Jamilla Lysicott compares complimenting a black person for being articulate to complementing an elderly person for being lucid. I can easily imagine a person with Down syndrome being “complimented” for being both articulate and lucid. Paul Bloom digs into the history, the science even, of stereotypes. We know, he says, not to ask a toddler for directions or an elderly person to help us move heavy furniture. Those are both stereotypes that are usefully accurate as they have been developed over the entire span of human existence. Not so with racial stereotypes, which are far more recent in human history (until a few thousand years ago, people stayed put with their own kind), and wildly inaccurate. The solution to breaking down harmful stereotypes? Not surprisingly, it’s meeting individuals from the group being stereotyped.

And that’s where we come in, mamas, and papas too, of children with Down syndrome, we all have a duty to educate those who do not understand Down syndrome, changing societal perceptions one-by-one. Look, if a world-renowned researcher like Richard Dawkins can be wildly ignorant of the facts of Down syndrome in this day and age, most of us “regular folks” deserve a pass for our ignorance and a hand up in becoming informed. Please take advantage of every opportunity to share what you know, even when queried with bumbling and outdated language. Continue to hear the intentions over the poorly-worded questions. A few short years ago, the person asking the poorly-worded questions could have been me. And, as hard as it might be to believe, in a few years that person may be you as our society continues to evolve past where we are now. Or, as my very well-read, open-hearted grandmother once told me when she was in her seventies, “The more I know, the more I realize I don’t know.”

Thank you, Mamas, I am continually grateful to walk on this journey with all of you.

Holly

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Degrees of Difficulty: Little and Big Kids

Little Kid Hard

Once upon a time, I had three little boys each born three years apart. Even before the third boy arrived in the summer of 2000, many a day I could not remember when I last had taken a shower or even brushed my teeth. That is because small children, particularly those under the age of five, have constant, immediate needs. Many involving body fluids, both the voiding of theirs (pee, poo and vomit) and the consuming of mine (breast milk). While I do have fond memories of that time, particularly when we were outdoors, hiking in the Hocking Hills in southern Ohio or the Cuyahoga National Valley Park up north, for the most part, I recall that time in my life in darker tones. In a few short years I’d gone from being on a PhD track, in which I took stimulating courses, had vibrant conversations and certainly did a whole lot of work, to, well, minimal adult conversation and an abundance of body fluids.

Of course I loved my small children, none of whom walked before fifteen months, which I believe was because I carried them so often. And even though the first few days that I nursed my first baby, I repeatedly told myself, If I can just make it through six weeks of this, it’ll be good, I ended up nursing all my children well past two years of age. Once I had the hang of it, I found nursing to be lazy-easy—it’s always ready, perfectly warmed, and quiets a crying babe in a New York minute. But also, I love the feeling of my children nestled into my body knowing that while they nurse, they possibly feel as content as they ever will.

Candid shot in 1998 with Hugo and Claude

Yet no matter how much I enjoyed listening to my three little boys learn to talk or saw how their faces lit up whenever they first saw me in the morning, the resignation from my adult life felt woefully permanent. And then, not infrequently, some sadist would observe me in a harried state, perhaps nit-picking lice in Hugo’s hair in a park while trying to keep the other boys from wandering off, or dashing into a children’s store to buy something off the sale rack because one of them (yeah, probably Hugo) had exploded a volcano of poo out the back of his diaper, all the way up and past the collar of his outfit, reaching the hair on the nape of his neck. Sigh. And this is when a woman (never a man), maybe an acquaintance, but often a stranger, would cackle her unsolicited opinion:

It doesn’t get any easier when they get older, trust me, honey, they just have different problems.

I now know that is just plain bunkum. And cruel. Yes, big kids can bring on bigger problems like school work, sex, drugs and college applications (maybe not in that order), but let’s be clear on what else big kids can do:

Feed themselves

Brush their own teeth

Bathe themselves

Dress themselves

Wipe their own behinds

Put themselves to bed

Dishes

Laundry

Think abstractly and have rational conversations

Big kids, hands down, are easier. Life with our two caboose babies, Leif and Lyra, underscores this point for me each and every day. So when I see little children with a mother whose hair is kinda greasy, spit-up marks on her shoulders, bra askew from nursing, and patience straining in her voice, I make sure to tell her:

It gets easier. So. Much. Easier.

The Low Down on the Big Kid Hard

Here’s the scoop: what your little kids do day in and day out may have a cumulative effect on what kind of people they will become, but there is little to mess up. Love them, feed them mostly nutritious food, make sure they get plenty of sleep, and odds are your kids will turn out just fine. Even throw in a few days of eating all garbage food, not getting enough sleep and a some less-than-perfect-parenting moments and still the odds are that your kids will turn out just fine. But when they are older, a child’s actions can have immediate and long-term, even lifelong, consequences. Unprotected sex can result in disease and/or pregnancy. Experimenting with drugs and alcohol can be a distraction from what is important, can effect brain development and, worse case scenario, can lead to addiction. Less than optimal achievement in high school can result in fewer options after graduation.

My approach has been to push and support my kids from the beginning. People think my children are polite because they say “Yes, please” or “No, thank you” when offered something. This training began simultaneously with speech development, which is why it is routinized to the point of seeming innate. The hard work of parenting is in sticking to your choices. Again, and again, and again. Or as Waldorf teacher and author Jack Petrash says, it’s the job of parents to get kids to do their work and it’s the job of kids to try to get out of their work. It’s not that any one moment of parenting is arduous, it’s providing consistency, staying in your seat as the parent even as your child endlessly challenges you. Pick your coat up off the floor and hang it on your hook, Go back upstairs and make your bed, Put your dishes in the dishwasher, thousands and thousands of times over. For years I would ask Hugo every night before bedtime if he had brushed his teeth. He always said Yes to which I always replied Let me smell your breath prompting him to answer Just a second before he dashed off. Whether he actually brushed his teeth or just swished some minty toothpaste in his mouth, I never knew unless I followed him to the bathroom, which I rarely did. (For the record, once he was of an age where kissing might occur, Hugo developed high oral hygiene standards.)

Beyond my ability to control, because it is part and parcel of my personality, and therefore my parenting, is that I talk openly with my kids, starting at a young age, about life choices, including sex and drugs, and the consequences. And I do so well before the important events or choices are at hand. So, for example, I bought a large box of condoms years before they were necessary and placed it in the hall closet, letting the boys know I wasn’t encouraging sexual activity, but should they or any of their friends become sexually active, to use protection and why. Mostly this has been a successful approach, though on at least one occasion my openness backfired. I had read accounts of men recalling how horrified they were, some even thinking they might be dying, when they began having nocturnal emissions because nobody had told them it might happen. Oh, my, I didn’t want my boys to have such fears and I told them about wet dreams when Claude was about ten and Hugo seven. Thereafter, and for a long, long time, neither boy accepted invitations for sleepovers for fear it would happen at a friend’s house, which, of course, it never did.

As for drugs, I grew up in the seventies with marijuana in all my parents’ households. In my dad’s family, marijuana was openly acknowledged. My mother, however, repeatedly responded like a child caught in an illicit activity: she would tell me the joints I found in her wallet, bedroom, car, etc. belonged to a friend who had asked her to hold on to them for a few days. Though I never pressed my mother as to why her friends designated her the keeper of the joints, some on roach clips and partially smoked, I was as unconvinced of her explanations as, well, any parent might be. What I tell my kids about pot, which is the drug they have regularly been exposed to in their peer groups, is that in high school they are too young to smoke it. If I hear they try it at college, I won’t be surprised, but please, I urge them, wait until your brains are fully developed. So far, as far as I know, they have followed my advice. Then again, it may have absolutely nothing to do with me. Claude is a serious distance runner and Hugo a highly motivated vocalist. I think smoking anything might not fit into their lives.

So Not Perfect

The only problem I have in my life right now is her,” said Hugo to Max last spring, referring to me. The three of us were sitting in my office discussing Hugo’s grades. It was his junior year, arguably the year in high school that most impacts college acceptance rates and financial aid packages. Hugo, who has always challenged me to improve my parenting, to rethink strategies, to confirm that no matter what he does, I’ll still be there with him, had worn me down. Many times in the past year, I have written essays about Hugo but never posted them on the pages of Whoopsie Piggle. He said he wanted to go to college and study vocal performance and music education, but his grades in his academic classes were not what he needed. Oh, they were probably good enough to get him into a school, particularly along with his high ACT scores, but not good enough to assure the financial aid package necessary for him to accept admission. As Claude and I have paid for all of Claude’s college expenses, I assume the same will be true for Hugo. Which means he needs as close to a full ride as he can get.

“If I could move out right now, I would,” said Hugo. For months, Hugo would tell both Max and me what we wanted to hear, that he had a plan and was finally on top of his academic coursework (he has always maintained straight As in his music classes), only to find just the opposite, his academic grades had slipped further, simply because he wasn’t doing the work. When he said he wanted to move out, I turned to my computer to find when he could legally do so in Ohio.

“I’m afraid, Hugo, we are stuck with each other until you are eighteen,” I told him. In the end, I gave up. Not on Hugo, but on his dream of going to a highly-rated music school. The problem was not that Hugo was goofing off, smoking pot or having sex instead of studying in the courses he didn’t find interesting. He was in band, three choirs and, over the winter, indoor drumline. It was too much. But there comes a time when a parent must stop making decisions by fiat and let a child live with the consequences of his own choices. It killed me to see him focusing on things that were not going to benefit him in the long run (band, drumline), at the expense of what he claimed were his long-term goals (a bachelor’s degree in vocal music).

Summer came and we literally moved on. Hugo went to visit friends on Ocracoke Island and Raleigh, North Carolina, then he spent a week at Baldwin Wallace College for an intensive vocal program, before heading to Karmê Chöling with us for family camp. On the way home from family camp, Claude dropped Hugo off at band camp. Five weeks after school resumed, I realized we were in the same situation as last year, except worse. In addition to his regular choirs and band, Hugo has joined the Baldwin Wallace Men’s Choir and, also by invitation, the choir of a nearby Presbyterian church where the choir director is also on the faculty at Baldwin Wallace. And, on top of his regular high school classes, Hugo now takes two courses for both high school and college credit at the University of Akron.

When the chest pains began at band camp, Hugo thought was just indigestion. Five weeks later, Hugo weighed only 141 pounds, having dropped nine pounds off his six-foot frame, and the chest pains, he belatedly confessed, were more frequent and severe. I scheduled an appointment with the doctor for the following week. But it was the next day, while talking with me in the kitchen, that  Hugo bent over and grabbed the edge of the counter and I witnessed one of his attacks for the first time. He had a second attack a few minutes later. It was terrifying. I took him to the emergency room where, after running several tests, the doctor told Hugo his body was telling him he couldn’t do everything he was doing. “Band is killing me, but I can’t quit,” Hugo told the doctor.

“Do you think they can’t get on without you?” asked the doctor, “Because they are going to have to do just that next year.”

In a perfect world, Hugo would have recognized last summer, before the season started, that band would be too much. Once in and overwhelmed, he did not want to let down his section mates. However, when he spoke with them in the days after visiting the ER, they told him they understood. Exactly one week after going to the ER, Hugo quit band. Fortunately, I went with him when he told the band and drum directors, neither of whom expressed genuine concern for Hugo, his health or his grades. Their sole concern was what effect it would have on the band. For his part, Hugo did most of the talking and held his own. I resisted the urge to pipe up until the band director’s comments went from just inappropriate (Oh, I wish I would lose weight when I get stressed!) to aggressive (So you tell me, Hugo, since you want to study music education, how you would re-write and re-organize this program with you not in it, I mean come on, this is what you want to study, music ed, and if your body reacts like this to stress, maybe you should think about studying something else.)

“Hold it right there, he doesn’t deserve that. He’s seventeen and figuring things out,” I said and shortly thereafter, we left the cramped office. We went home and a few days later, Max pointed out that Hugo was back, meaning he’s himself again, more relaxed, playing guitar in the kitchen most nights after dinner. And then Hugo’s father came to town.

The Elephant in the Room

In the winter of 2007, after six months of intermittent pain in my right side, my physician ordered an MRI. The results revealed nothing and yet the pain not only continued, it intensified and became constant. Three months after the MRI, the pain abruptly stopped on the very day I told the father of the three big boys that I wanted to separate. Contrary to public appearances, it was never a happy marriage, but leaving was the hardest decision I have ever made.

One by one, as the boys have become teens, they have told their father how they feel and what they want from him. And each time their father has responded by telling them that their relationship with him is a two-way street and, when they do not just fall in line with his directives, he stops seeing them. Shortly after he turned thirteen, Jules alone saw his father for dinner one night a week and for lunch every other Saturday.

On a Saturday in August of 2014, Jules came to Max and me telling us, “I feel so trapped. Papa just called to say he’s getting off the highway with all his friends from the Cleveland Waldorf school and he’s taking me to go with them to some park and play boules. I just want to go to lunch.” We counseled Jules to call his father back and tell him just what he had told us, which he did. Rather than having lunch with Jules and joining his friends later, his father cancelled that day’s visit with Jules. They had dinner later in the week, and when Jules came home he was a mess of emotions. “Papa just told me over and over how unkind I was to not want to meet and get to know his friends, like, you know, this and everything else he’s done, I don’t want to be alone with him ever again.” Jules begged Hugo to join him at the mealtime visits with their father from then on and Hugo readily agreed. Two things happened at the next visit: their father told them he was moving to the Middle East in five days and, when Hugo went to the restroom, Jules was again told what a horrible boy he was to not spend time with his father’s friends. Five people breathed with relief when a certain plane left Ohio for Dubai.

Now, for whatever reason, their father wants to move back to Ohio. What he says to anyone who will listen is that he misses his three sons so much that he is doing everything he can to find work in the area. Toward that end, he let us know he would be in nearby Cleveland looking for work in early October and wanted to visit with the boys.

“I told him none of us believe him when he says he wants to come back for us, such bullshit. I told him it’d be easier for me if he just stayed away. He gave me that two-way street garbage again,” said Claude after his father visited him for the first time at the University of Michigan, where Claude is in his third year.

Jules was adamant that he never be alone with his father and wasn’t. The two times they met for dinner, Hugo was there too.

Hugo. Earlier this year when I took their father back to court for violating (yet again) the divorce decree, he claimed it unreasonable for him to contribute to the boys’ expenses because they don’t discuss their activities with him. Besides being untrue, it is an abdication of basic parental responsibilities, which is exactly how the court viewed it. For a few months, their dad began paying for some their expenses. Hugo, who never misses an opportunity, started asking his father to pay for all kinds of things. As soon as his father came to town, Hugo worked on getting a computer. But a funny thing happened. Hugo’s throat got sick. It felt constricted and he couldn’t sing with the fullness of his voice, and one day he couldn’t even speak in normal tones. It was the week before the most important vocal competition of Hugo’s life thus far, at Miami University of Ohio. Miami University is not only my ex-husband’s alma mater, he also taught there for a time. Eager to drive Hugo to the competition, his father said they could stay two nights in a hotel and he would show Hugo the campus the day after his competition.

I took Hugo to Lyra and Leif’s pediatrician, Dr. M, for his throat. She had never seen Hugo before and I’d never seen Dr. M in action with a teenager. In twenty minutes, he was crying as she laid it out for him. “Hugo, you say you don’t care about your dad, but you are seriously pissed at him. Because he won’t give you what you really want, which is for him to be a real father, you feel like taking him for whatever you can get. But the problem is that you are an honest person and this makes you feel conflicted. Let me ask you, is this a vocal competition you want to do well in? And so you are going to go there in a car with a man who once told you he was taking you to southern Ohio but instead took you to Tennessee and so understandably you don’t trust getting in the car with him? Let me ask you this, are you nuts? Write your dad, tell him why you want a computer and tell him he doesn’t get to parachute into your life when it’s convenient for him. You may want a relationship with him, but it’s on your timetable now, not his. This is your senior year, and he does not get to mess it up just because suddenly he says he’s ready. Maybe you tell him you’ll talk after the competition, maybe not. Maybe you won’t be ready until after you graduate. It’s your call, buddy, because he does not get to hijack your life.”

Hugo wrote the letter to his father. He told his father not to attend the competition. Hugo and I went to Miami University. In the first round of performances, the two singers before Hugo were nervous sopranos and it showed in their voices. When Hugo walked onstage with the accompanist, I could tell he was relaxed. He opened with a piece by Franz Schubert and although his German was lousy, his voice was sublime. And powerful. Hugo was named one of six finalists.

“I would not have made finalist if my father had been there,” Hugo told me on the way home.

One Kid, Always Hard

So maybe this kid, Hugo, is no easier, maybe even harder, as a teen than he was as a little guy. A little guy who had colic for six months (or maybe it’s like a fish story and the number grows larger with each retelling), the toddler who cried like we would never meet again every time I dropped him off at daycare, often resulting in tears of my own, the kid who never felt he fit in at any of his schools, even the Waldorf school.

“Hugo craves your constant attention,” Max recently said to  me, “and simultaneously pushes against it, it’s so strange.”

Life is complicated, people are complicated. As a parent, perfection is not required, but showing up is. Even without his father’s latest theatrics, Hugo’s senior year is an all-hands-on-deck time. I’ve stopped taking on new clients for now and drastically cut my hours at my “for fun” job at World Market. College applications are time consuming and at the same time, much like Claude in his senior year, Hugo is ambivalent at the prospect of moving out and on with his life in a few short months. He’s excited. He’s nostalgic. He’s nervous. I know this because every day he pulls me aside, corners me in the kitchen, or just plain hunts me down, to talk.

My little kids were so much work in large measure because I chose attachment-style parenting. I’m sure I made this choice in an attempt to heal my own upbringing with checked out parents. But I also believed it when I read that attachment-style parenting resulted in independent, undisaffected teens and, later, adults. I don’t know where Hugo will end up next year. His strong work ethic in all things musical, even more so than his raw talent, might very well result in him getting the financial aid package he needs to study vocal performance and music education at one or more of the schools he is considering.

What I do know is this: No matter what happens, Hugo will be fine. Whether or not cultivated by attachment-style parenting, Hugo is resourceful, hardworking and empathetic. He doesn’t always apply himself the way I want him to in all things, but what kid does? In fact, it would be weird if he did. If anything is easy with little kids it is that their needs (food, sleep, voiding) are pretty clear. Just as I had to get through the first difficult weeks of breastfeeding my first child, I see Hugo struggling to get through his six last months of high school, which requires nuanced parenting on my part. But Hugo’s got this, even if he doesn’t yet know it, and I still have his back.

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What Suffering? The Down Syndrome Advantage

I see you and Max acting so bravely, but nobody asks for a child with Down syndrome.

I recalled those sugar-coated words of sympathy, spoken by a relative of ours a few weeks after our beautiful, healthy daughter was born, when I read of Richard Dawkins’ advice to an expectant mother. Dawkins is an Oxford professor of evolutionary biology and an ethicist, who is perhaps best known for his 2006 book, The God Delusion, written to contend with those who deny the existence of evolution. In August of 2014, Dawkins tweeted to a woman who had inquired what he thought she should do if the fetus she was carrying tested positive for Down syndrome:

“Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

Dawkins’ tweet went viral (I think largely because of his use of the word “immoral”), which he later defended as the humane position to take in order to avoid suffering. His position reveals how much remains to be done to educate everyone who does not know someone with Down syndrome, which was underscored when the outrage at his tweet seemed more focused on Dawkins’ atheism than his stand on aborting all fetuses with Down syndrome.

I don’t find Dawkins’ atheism to be any more controversial than the multitude of religions practiced by humans worldwide. What bothered me is that this somewhat firebrand scientist, who is not afraid to challenge dominant thinking, simply accepted an unsubstantiated position widely held by most people, i.e. Down syndrome equals suffering, and uncritically endorsed exactly what happens in the majority of cases where a woman discovers the fetus she is carrying has Down syndrome—the termination of her pregnancy.

This disconnect is not a function of religion, compassion, or a lack thereof, but is rather the result of a stunning lack of facts.

Not Your Grandparents’ Down Syndrome
Before the 1980s most people, including me, did not grow up knowing anyone with Down syndrome. That is because, until the 1980s, the overwhelming majority of people with Down syndrome were institutionalized, often beginning at birth.

Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in 1964, a longitudinal study was conducted comparing a group of infants with Down syndrome who were institutionalized to a group who were raised at home. The study continued until the children were eight years old and found the children who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.” These studies were some of the the the earliest steps in re-thinking what it means to have Down syndrome and to reconsider the wholesale institutionalization of this population.

I was born in 1965 and never saw a single child with Down syndrome enrolled in any of the ten schools I attended, in four different states, from kindergarten through high school. Nor did I grow up seeing adults with Down syndrome working, as they commonly do today, in grocery stores, restaurants, offices or any other businesses that serve the public.

The first people I met with Down syndrome were adults in group homes where my parents worked. Overwhelmingly, these residents with Down syndrome had lived most of their lives in institutions, only moving into group homes when, in the 1980s, the institutions were dismantled by the U.S. government. As I explain in my essay, “Changing Expectations,” what I as a young woman mistook as the reality of life with Down syndrome was based upon meeting people who had spent their entire lives institutionalized. The consequences of life-long institutionalization, where social and emotional deprivation is the norm, is catastrophic for any human being, as shown in studies (and these) of typical children raised in Romanian orphanages in the 1980s and ’90s.

It was not until the 1970s that the two major U.S. organizations that advocate for people with Down syndrome, the National Down Syndrome Congress (1973) and the National Down Syndrome Society (1979), were created. Both organizations make clear that caregivers—parents, teachers, friends and extended family—should set the bar high for kids with Down syndrome. For children with Down syndrome most often meet, and regularly exceed, the goals set before them.

At the same time that children with Down syndrome were beginning to be raised at home and national organizations were advocating on their behalf, the therapeutic professions, including physical, occupational and speech, began working with infants and young children with Down syndrome. Four decades later, these professionals and others have continued to discover more and better ways to enhance the physical and linguistic skills of children with Down syndrome. In other words, when our now two-year-old daughter Lyra is 18, it is likely that she will be capable of more than what most 18-year-olds with Down syndrome are capable of today. That is because today we know much more about therapies and interventions for young children with Down syndrome than we did 18 years ago and this trend will only continue.

We live in exciting times for people with Down syndrome. There is every reason to expect a baby born today with Down syndrome to live a full and productive life, including mainstream schooling, college or other post-secondary training, independent living, careers, marriage and even (what surprised me the most) driving automobiles.

And this is where the disconnect of information exists. People who are not in the Down syndrome community, as well as many medical professionals who should know better, overwhelmingly still believe, perpetuate, and make decisions based upon grossly false assumptions about Down syndrome.

Put simply:

  • Historically, the abilities of people with Down syndrome were wrongly underestimated.
  • The end of institutionalization combined with appropriate medical and therapeutic interventions have radically increased the abilities, skills and life expectancy of people with Down syndrome.
  • In era when so much is possible that people with Down syndrome truly are more alike than different from the typical population, the Down syndrome population is being targeted, usually under the misguided assumption of minimizing suffering, for significant (and in the case of Denmark, complete) elimination.

The Down Syndrome Advantage

Lyra and Leif who play, and fight, like all siblings

Lyra and Leif who play, and fight, like all siblings

Dawkins’ tweets on Down syndrome and abortion was simply a personal statement of what is the dominant opinion in North America and Europe. Statistics show that most women who discover their fetus has Down syndrome elect to terminate the pregnancy, even in Ireland where abortion is illegal. A week after Dawkins’ tweets went viral, an op-ed piece appeared in the New York Times. In“The Truth About Down Syndrome,” authors Jamie Edgin and Fabian Fernandez cite several statistics from research on people with Down syndrome and their families, including some that I have presented in previous essays:

  • The divorce rate in families that have a child with Down syndrome was found to be lower than in families that have a child with other congenital abnormalities and lower than those that have a non-disabled child.
  • In a sibling study, 88 percent of the respondents reported feeling that they themselves were better people for having younger siblings with Down syndrome.
  • 99 percent of people surveyed with Down syndrome (284 respondents), including people who are categorized as “medically fragile,” stated that they were personally happy with their own lives.
  • Researchers have found that people with Down syndrome have significantly higher “adaptive” skills than their low IQ scores might suggest.

These and similar statistics are why the phrase “the Down syndrome advantage” has been coined. For it seems, when reviewing the now substantial body of scientific research on life for people with Down syndrome and their families, that rather than suffering, most of these people are experiencing a higher quality of life than all those poor folks who do not have Down syndrome or a family member with Down syndrome. Why, then, does the perception of suffering persist?

Latent Bias for the Developmentally Disabled

There has been plenty of research on the existence of latent racism, as Nicholas Kristoff reported in August of 2014, even people who “deplore racism…harbor unconscious attitudes that result in discriminatory policies and behaviors.” Similarly, the term “suffering,” when used in a discussion about developmental disabilities, seems to be code, perhaps subconsciously so, for latent discrimination against people with lower intelligence.

For example, bipolar disorder is a genetic condition and while schizophrenia may not be genetic, it is certainly a biological event and these two mental illnesses often afflict people of incredible intelligence and creativity, who can and regularly do suffer greatly, as do their families. And while those who have mental illness share with the developmentally disabled a long overdue need for greater support, compassion and medical research, I don’t detect a movement afoot to prenatally eliminate intelligent people with mental illnesses simply because they and their families will surely suffer.

An even better comparison might be cystic fibrosis, a genetic disease that until the 1950s killed most children with the condition by the age of five. In a time span mirroring the same decades in which medical progress has occurred in the treatment of children with Down syndrome, today babies born with cystic fibrosis can be expected to live well into their thirties or forties, or approximately half as many years as the average population. In their shorter lives, a person with cystic fibrosis can expect frequent medical appointments and, not uncommonly, emergency hospitals stays. That is to say that the majority of people with cystic fibrosis are more medically fragile than most people with Down syndrome. However, people with cystic fibrosis do not have delays or disabilities in cognition related to their condition. Do people with cystic fibrosis suffer? I leave it to them to say, but their lives are no less, and often are far more, medically compromised than the lives of people with Down syndrome. Are people with cystic fibrosis less valued members of society because of their shorter life spans? It seems not and, again, there is no push to eliminate prenatally people with cystic fibrosis no matter how much they and their families might suffer.

The standard all too often applied when considering a prenatal diagnosis of Down syndrome is the avoidance of presumed (and statistically unproven) suffering outweighing the value of a diverse population. This same standard is never applied when discussing the lives of people with average or above average IQs who have congenital or genetic conditions other than Down syndrome, even when those conditions lead to unquestionable and significant suffering.

Granted, today there are no prenatal tests available for many of these conditions, but that may likely change. And when it does, there should never be any movements to eliminate entire populations of people with mental illness or cystic fibrosis like there currently is to eliminate people with Down syndrome. Rather, as a society we should devote funding for research to find effective means of ameliorating the negative effects of of these and other conditions. Yet repeatedly I have heard from researchers who work on finding ways to improve the lives of people living with Down syndrome that funding for research on Down syndrome has been reduced in the past few years, being diverted instead to prenatal testing research.

Informed by Experience

While it is true that in Europe and North America the majority of fetuses that test positive for Down syndrome are aborted, the number of women choosing to keep their babies when receiving a positive test for Down syndrome has increased slightly in the past two decades. Researchers believe this is because “women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers — perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street.”

To know someone who looks or lives differently than you is to discover their inherent humanity, evaporating any “otherness.” People with Down syndrome are indeed more alike than different, but they are also inspiring. Inspiring because of their accomplishments in a society that remains largely ignorant of what it means to have Down syndrome. Inspiring because, yes, a person with Down syndrome often has to work harder than his or her siblings and classmates to achieve the same things. But time and again, they go on to succeed, and even surpass, expectations.

Those of us in the Down syndrome community know the value of people with Down syndrome and many families have publicly invited Dawkins to meet their sons and daughters. Toward that end, I speak with other families each year to first-year medical students at Case Western Reserve University. We share our experiences of having a child with Down syndrome, while older children with Down syndrome speak directly with the students. I am always impressed by the level of engagement of these students, who seem to get it, that people with Down syndrome are fully human, long before listening to us. Last year, when I mentioned adoption agencies that specialize in the placement of children with Down syndrome, one of the professors interrupted me.

“I just want you all to know,” she said, “that there are far longer waiting lists to adopt children with Down syndrome than for typical children.”

Which is to say a significant number of people do, indeed, ask for a child with Down syndrome.

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Nothing to Fear: Human Rights for People with Down Syndrome

Sarah and I were in Pittsburgh for Quilt Market where we stayed at the downtown Westin. When the elevator stopped on our floor there was a man dressed in business attire already on it. I looked over at him and could see tears welling in his eyes. By the time we got to the second floor to get off, the tears were rolling down his checks. My first impression was maybe he just got fired from his job. Then I thought maybe he was in town for a funeral. As Sarah and I walked off, he came over to us and asked if he could share something. He could barely get the words out but managed to tell me that he and his wife had been expecting their fourth child, a girl, and they knew she had Down syndrome but his wife miscarried three weeks ago. My natural reaction was to give him a hug and tell him how sorry I was. His reply brought tears to my eyes, too. He said, “Thank you for saying that. Everyone else is telling us it was the best thing that could have happened. I see your daughter and she is beautiful.” I was at a loss for words so I gave him another hug and then we went our separate ways. But I thought about that interaction all weekend. Why are people so afraid of Down syndrome that they would tell a grieving family it was for the best? ~A post in my Facebook feed this past spring.

My essays on Whoopsie Piggle have, by design, emphasized how having a child with Down syndrome is little different than having a child without Down syndrome, which is also why not all my essays focus exclusively on my daughter Lyra and her DS. I read somewhere that we are all on the path of disability whether caused by age, illness, accident or an extra chromosome. Tangentially, I have discussed medical issues that are more common in people who have Down syndrome, most particularly vision issues as Lyra was born with bilateral cataracts (occurring in 3% of newborns who have DS versus .03% of those born with 46 chromosomes). More recently, and painfully, I have written about the congenital heart problems that affect approximately 40% of the population with Down syndrome. Before this summer, I had met so many babies and young children who had undergone successful heart surgeries that I unintentionally dismissed the gravity of these cardiovascular diagnoses. And then three babies, all the same age as Lyra, died in just one week this past June. I wrote about babies Ryder, Fiona and Annie in “A Painful Week in the Down Syndrome Community.” Without rescinding my position that having a child with Down syndrome is little different than having a child without DS, I believe it is vital to discuss the possible medical complications that can accompany a diagnosis of Down syndrome. Why? Because uninformed fear causes people to say hurtful things. Because poorly informed medical personnel say fear-driven, and largely inaccurate, things when giving an expectant mother the news that the child she is carrying has an extra twenty-first chromosome. Because in some parts of the world, including regions in the United States and Canada, the Down syndrome population is undergoing a quiet campaign of genocide.

Children May Die

In my last essay, I wrote about traveling in Spain this summer with my oldest son, Claude. Watching my firstborn become a fully-fledged adult has made me ridiculously emotional. I don’t think of myself as a crier. As a child I learned not to cry at all costs. I rediscovered my tears when I became a mother, but in the past two years, I surprise even myself with sudden and unpredicted weepiness. I mentioned crying as I told a Starbucks barista in Barcelona how delightful it was for me, a mother of a child with Down syndrome, to see the respectful and fun relationship the café employees had with their team member who has Down syndrome. What I did not write in that essay was that every morning in Spain, every single morning, I cried. Most mornings, Claude rose and went for a run, leaving me to shower and get dressed. Before I did, however, I’d pull up Facebook on my phone while still lying in bed and weep over the pages of the babies who had died the week before I’d joined Claude in Spain. After her first heart surgery more than a year ago, Fiona’s remarkable parents created Fiona’s Hope Totes, which has its own Facebook page. This non-profit delivers care packages to families in Minneapolis/St. Paul who are experiencing an unexpectedly extended hospital stay with a sick child. The day before she died, Fiona’s family posted an urgent request for prayers as Fiona had been rushed back to the hospital due to complications after a second heart surgery. In the weeks after she died, that post requesting prayers remained the last post on the page, like a scream that wouldn’t fade as the family privately grieved.

Baby Annie’s doctors would not place her on a heart transplant list, whether due to complicating medical issues or the fact that she had Down syndrome remains ambiguous (that there is discrimination against the developmentally disabled getting organ transplants is not ambiguous, the subtle discrimination is real). Annie’s parents opened their lives to the world on her Facebook page, Annie Golden Heart. When I learned of her situation, Annie was alive, but in hospice attended by her parents and two sisters. Each day, I followed her page, hoping for a miracle, hoping as her story drew substantial attention from people worldwide that someone, somewhere would find a way to save that baby. Instead, day-by-day as I and countless others watched, Annie grew bluer, more lethargic and puffy. And then she died. In Spain, I saw the daily posts of a family submerged under and shattered by grief. Pictures of a baby’s grave more preciously decorated than any child’s bedroom, photos of a healthier Annie just months earlier including a collage of the once smiling tot with vibrant red hair and the facial features of her daddy. However, the photo that made me touch my iPhone screen with my finger, as though I could pass comfort through my device, was of Annie’s oldest sister with her face painted to look like a tiger. The caption read: Today is Nicole’s 9th bday. She has been a great sister to Annie. We are so thankful to Marie for taking the girls out today to have fun since it’s still very hard for us to even leave the house. Happy Birthday, Tiger!!!!

Only recently did I learn that baby Ryder had group B meningococcal disease, the most common strain of bacterial meningitis found in the United States (though Ryder did not live in the U.S.). I have found no evidence that having Down syndrome makes a person more susceptible to meningitis or the consequences of the disease more severe. What Ryder’s family is going through I would not wish upon anyone, but his Down syndrome had nothing to do with his death. I carried those babies, Fiona, Annie, and Ryder, with me as I traveled Spain with Claude.images When we visited churches, I looked for La Pieta stations in which Mother Mary holds her dead son, Jesus, just after he’s been removed from the cross. When I found them, I lit a candle for those families. You do not have to be Christian, only human, to feel the emotions of that station in Mary’s life. It’s easy to imagine for centuries parents who have lost a child have found La Pieta a sanctuary of familiars.

When I returned to the States, I was too busy to look at Facebook for a few days. When I did, I saw that Annie’s page had been taken down and Fiona’s Hope Totes had resumed. Fiona’s valiant family was once again delivering care packages to families. Everyone’s journey with grief is unique and there is no accepted protocol except to grieve. A few days later, Annie Golden Heart was again a page on Facebook. I found Ryder’s page and his parents and two older brothers have taken Ryder’s favorite toy, Bear-Bear, traveling with them and posting photos of the white bear at an aquarium, a theme park and in the arms of Ryder’s older brother who took Bear-Bear to bed with him for comfort.

The Ones Who Live

Most babies born with heart defects survive due to surgical corrections that have, in most parts of the world, become routine procedures. But sometimes babies born with congenital heart defects, both with and without Down syndrome, die. And the parents who lose children with Down syndrome grieve every bit as much as other parents. But what about the children with Down syndrome who live?  Most, but not all, babies born with Down syndrome have developmental delays. Meaning, things just take longer and sometimes more support is required along the way. Though hitting developmental milestones later than their peers without DS, most people with Down syndrome will walk, talk, dress themselves, read, go to school, graduate high school, cook, receive post-high school education or training, get jobs, fall in love, live independently, grow old and, like us all, one day die. That is “typical” life with Down syndrome. But what about the babies who face medical challenges beyond developmental delays and heart defects?A friend recently posted that she worries about telling people her son with Down syndrome has seizures. She is glad “he’s alive and he’s mine” but fears that someone else expecting a baby with Down syndrome who knows her son has seizures may chose an abortion based upon his case. Another friend told me about a woman who is a single mom of a boy with DS who is probably deaf, cannot talk, and cannot walk.

We, in first world countries, live in a medically miraculous time. A time unlike any known to humanity, in which death does not often visit us until we are middle aged. My ex-husband’s family lived for well over a hundred years in a small town in southeastern Ohio. Over the years, I heard stories of an ancestor named Flavia. Born in Germany, she studied music and had been introduced to at least one famous composer. In their tiny town in Ohio, Flavia taught music to children and had a parrot that often provided vocal accompaniment. On a visit back home (as my ex-husband used to call it), his aunt told us that Flavia’s gravestone had been vandalized and repaired. Later that afternoon, we stopped at her grave, which we had learned only that day was very near the city’s brick firehouse. I have no recollection of Flavia’s gravestone; I only remember the two stone lambs carved in marble on top of much smaller gravestones next to Flavia’s. Cholera claimed two of her children, ages four and six, in one summer, something nobody had ever mentioned. In the nineteenth century childhood death was not remarkable, yet families grieved as deeply as they do today. Visit any cemetery that dates back before the existence of antibiotics and you will find entire sections devoted to children, families who birthed eight, ten, or more children only to bury all but one or two.

Overwhelmingly, modern medicine is good, but not everything can be fixed. In the typical population, children are born regularly with, or later develop, learning disabilities, autism spectrum disorders, seizures, cancer, mental illness, vision and hearing difficulties. As of now, and unlike Down syndrome, these conditions cannot be detected with prenatal testing. However, that will likely change. And when it does, what will then be considered acceptable? Who defines which babies are perfect enough to be born? In human history, one need look no further than the past century to find pernicious programs to reduce or eliminate certain groups. Black women in the United States were frequently sterilized without their knowledge or consent. The Nazis target Jews, gypsies, homosexuals and the developmentally disabled (among many others) for systematic elimination. As the child of Christian missionaries in China, Pearl S. Buck regularly found the corpses of female newborns who had been discarded like trash. Looking back, this much is clear: once a society has decided that certain groups are not equal or good enough to exist, that decision is never static. If today it seems reasonable to seek a society free of members with Down syndrome, I guarantee that in the near future, particularly as prenatal testing begins to tease out more and more pre-existing conditions or potentials, the slippery slope of genocide will expand.

Weeding Out Variation

That Down syndrome is diagnosable, not only at birth, but also in prenatal testing, is good because, unlike autism or dyslexia, which are subjective diagnoses, results come easily and quickly. With an accurate diagnosis, appropriate support can be given to maximize the potential of an individual diagnosed with Down syndrome. However, because it is a yes-or-no clinical diagnosis, parents can also elect to abort a fetus because it has Down syndrome. Let me be transparent: I believe abortion should be safe and legal. I also believe it should be extremely rare and that support, including free birth control, should be available to all women to reduce the number of abortions. However, what the population with Down syndrome now faces is not an issue of abortion rights, but human rights. To target a specific segment of the population for elimination is simply genocide. We now have the medical means to tell a woman with a simple blood test whether or not her fetus has Down syndrome, underscoring two important points:

  • d6255c3f346e773727932e0f5a74b58aMaking abortion illegal won’t stop the termination of pregnancies where the fetus has Down syndrome any more than it would end abortion for fetuses with 46 chromosomes. In Ireland, where abortion is illegal, the abortion rate for pregnancies where the fetus has tested positive for Down syndrome is 50%.
  • Once we’ve chosen as a society to decide who is human enough to live and who needs to be eliminated, watch out. Any group could be next.
  • Unbiased, accurate information is every woman’s right when receiving a diagnosis of Down syndrome for her fetus or newborn.

In the U.S. we know, based upon statistics, approximately how many babies should be born each year with Down syndrome. But, on average, only about half as many are. For several years in Denmark, aggressive prenatal testing accompanied by counseling that encourages aborting fetuses with Down syndrome has brought the rate of Down syndrome termination to a consistent 90%. In France, it’s over 80%.

My Child Is a Figurative Billboard

In early June, before all those sweet babies left us, my partner Max and I went to a party. We brought four of our children, Hugo, Jules, Leif and Lyra, to the family-friendly event at a beautiful home with a sprawling yard. I had a fabulous conversation with a woman who was smart and funny. After a long conversation, we separated and then reconvened. Lyra was nearby hustling around on all fours with her newly-perfected bear walk.

“She’s so cute, how she crawls on her hands and feet.”

“ Yeah, it takes them so much longer to crawl and walk with Down syndrome.”

“Wait, your daughter has Down syndrome?” the woman asked, looking astonished.

“Oh, yes,” I said. To me it is obvious Lyra has DS, but I am now firmly located on the inside of the larger community of those who have family members with DS and can recognize it more readily than I could before Lyra was born.

“You are so much stronger than I could have been,” the woman said and I disagreed with her. “No,” she continued, “I’m telling you that you are stronger than I was. In my late 30s, I was still single, I had IVF to get pregnant. When I was pretty far along, they told me the baby had Down syndrome and gave me two days to decide. I couldn’t do it. I would have been alone, I…I didn’t do it.”

“I have no judgment,” I said, knowing this woman made the best decision she could with the information she was given. I then watched the features on her face rearrange themselves, her eyes going from narrowed and intense to wide and open.

“But I see your daughter and,” she paused, “it makes me wonder.” I gave her my card, but not surprisingly, I never heard from her. In five minutes, I watched a woman think she could not have possibly raised a child with Down syndrome to wondering deeply, perhaps painfully, what her life really might have been like as the mother of a child with Down syndrome.

Educating the Gatekeepers: Medical Professionals

It is tragically ironic that at a time when we better understand Down syndrome as a range of developmental delays and that those who are diagnosed with DS often positively respond to appropriate interventions, the termination rates in pregnancies with a diagnosis of Down syndrome are escalating to an alarming degree, in some places to the point of annihilation. We have the knowledge to diagnose and remediate Down syndrome but far too often, the message given with the diagnosis over-emphasizes worst case scenarios or contains information that is ridiculously inaccurate. (See the opening quote of “Fully Human and in Need of a Civil Rights Movement.”) Medical professionals, whose job it is to know the latest research findings, are not always giving scientifically accurate and balanced accounts of what it means today to be born with Down syndrome. In fact, statistics suggest that more often the opposite is true. My own understanding of Down syndrome has dramatically changed since the birth of my daughter. What I once saw as the reality of life with Down syndrome I now realize was based upon meeting people who had spent their entire lives, often beginning at birth, in institutions. My daughter stands on the shoulders of the past two generations of people born with Down syndrome who have been raised at home and in their communities, many of whom have worked with physical therapists, occupational therapists and speech therapists. Just as with her brothers, we expect Lyra to strive, even work hard, for all she can accomplish while we support her efforts in any way we can.

Preaching Past the Choir

Parents who have children with Down syndrome know that our children are more alike than different, that they enrich our communities and deserve, as do all human beings, to live full, productive lives. However, until everyone who does not have the pleasure of knowing someone with Down syndrome is made aware of the full humanity of people with Down syndrome, the population remains at risk for a quiet campaign of prenatal genocide and medical discrimination, whether in the form of inaccurate information at diagnosis, low expectations of children with Down syndrome (she’ll walk/talk/learn poorly because she has Down syndrome), or unequal access to medical care, including organ transplants. There are a number of organizations working to eradicate discrimination against people with Down syndrome by educating people everywhere. Please feel free to share the names of organizations you know of in your comments. Here are some that are doing very important work:

  • The National Down Syndrome CongressThese are the folks who conduct the annual convention we have attended each year since Lyra’s birth have as their campaign “More Alike than Different.” Their mission is “provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome, and work to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.”
  • The National Down Syndrome SocietyWith the mission “to be the national advocate for the value, acceptance and inclusion of people with Down syndrome,” NDSS often takes the lead on legislative issues such as the ABLE Act (read about the ABLE Act in “Miss Lyra Goes to Washington“). NDSS is the national sponsor of the Buddy Walk, a fundraising and awareness campaign that takes place each year in cities across the United States. Our local support group, The Upside of Downs, is an affiliate of NDSS.
  • Down Syndrome Diagnosis NetworkThis newly formed organization was created by a group of Mamas who have babies the same age as Lyra. DSDN’s long-term goals include filling in the gaps of inadequate support systems. In addition to supporting new families, DSDN is focused on changing the diagnosis conversation with the vital mission to help “parents give their medical providers feedback on the quality of their prenatal or birth diagnosis conversation.  DSDN provides health professionals the necessary resources in order to deliver future diagnoses with unbiased information and support.” Read: gatekeeper education campaign. The work of DSDN is paramount, now more than ever.
  • The National Center for Prenatal and Postnatal Down Syndrome ResourcesComplementing the work of DSDN, this organization is a clearinghouse of the most up-to-date information regarding Down syndrome. Furthermore and significantly, this organization tirelessly advocates for legislation, state-by-state, requiring accurate information be given with a diagnosis of Down syndrome. For information on the various states that have passed legislation requiring accurate information to accompany a DS diagnosis, and how it has been carried out, read this.
  • The National Down Syndrome Adoption Network: Not everyone, for whatever reason, can raise a child with Down syndrome, like the single mother who struggles to raise her son who is also medically fragile. And no matter how much education is given, there will still be some families who simply may not want to keep a child with Down syndrome. NDSAN is a non-profit that works both with birth families seeking placement of a child with Down syndrome and families who wish to adopt a child with Down syndrome with the mission of ensuring “that every child born with Down syndrome has the opportunity to grow up in a loving family.”

The Choices People Make

Along with the families who lost their babies this summer, I have thought frequently about the woman I met at the party who had terminated her pregnancy. Her desire for a baby had to be substantial as IVF is a painful, lengthy and expensive process. But then she was given frightening information and the directive to decide in two days what she would do. Knowing what I know now, I can only wonder: What if she had met Lyra before she received the diagnosis? What if she—and thousands of expectant mothers like her—had been given accurate information along with resources for support? I cannot help but believe, based upon the change I saw this woman undergo in five minutes, that today she would be the proud mother of a child with Down syndrome. And if all women were to receive the full and unbiased information that they deserve as autonomous adults, would we then be closer to a society that values the human rights of its Down syndrome citizens, rather than one that tacitly endorses the elimination of that population? I believe that, yes, we would.

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Would I Cry?

When he was a senior in high school, my eldest child, Claude, called me a bad-ass mother (which I mistakenly took as pejorative until he explained the parlance of his generation). It’s true, my parenting mantra is “push and support.” So why, in the two years since he graduated high school, have I cried like a melodramatic helicopter mom at every turn in Claude’s life?  Fortunately, with each adult milestone Claude passes, the chest-wrenching feeling diminishes and I cry a little less. The day before this past Mother’s Day, I was dry-eyed as I snapped photos of my son, Hugo, who, dressed in a sports coat and white shirt, stood arm-in-arm with Claude, whose new REI outward-bound backpack was strapped on his back over a quick-dry travel shirt. Then Hugo and I watched Claude peel off his layers for airport security, walk through the TSA doorless doorway, reassemble himself and, turning towards us, wave before heading off to his gate. Ardently, Hugo and I waved in return. I sucked in my breath. “Oh, Mama,” said Hugo as he placed his arm around my shoulders and pulled me to his side, “don’t cry, Claude’s going to be fine.” Though his response was sweet, Hugo’s words were misplaced. My tears these past two years have not been out of concern for my eldest son—far from it. In fact, I never cry over Claude, not really. His beginnings are my endings and grief, mixed with no small amount of joy, is the source of these sudden showers.

"Dream or Working Virgin" by Vincente Cutanda

“Dream or Working Virgin” by Vincente Cutanda

The day after he graduated from high school in June of 2012, Claude boarded a Greyhound bus for his grandparents’ home and a fulltime job in northern Michigan. Each summer, my three oldest boys have stayed for weeks at a time with these same grandparents, my stepmother and her husband (who is not my father; yes, we are a very modern family), who live just a block from Lake Michigan. And yet the day after Claude left, I called my stepmother and cried so hard she could not understand my words, though she knew exactly what I was saying.

“I’ll…never have…the three of them…together…on a road trip…again…it’s over…how can it be that it’s already over? I never…took them…to Yellowstone or…or, or well…other places,” I said sounding like a five-speed transmission bucking a new driver, my diaphragm slam-dancing in my chest. My stepmom said she understood and let me reel on and on until there was nothing left to release and, as abruptly as it had started, the episode ended.

Look, it’s no secret that I love big kids, especially my own. And neither is it a secret that I’m not terribly crazy about small children, except my own. Small children are often noisy and irrational. I think perhaps that’s why I breast fed all my kids for so long—nursing consoles otherwise inconsolable children thereby quieting them, sigh of relief for that, which is to say nursing is selfish on my part. I love who these people I raised have turned out to be; still, gone are the warm days of feeling like a mother quail with my little chicks following behind me in a row as we explore the world both near and far. As it should be, the reward for good parenting is adult children who venture out into the world on the paths they choose. Be that as it may and even with a career and full life, I am not immune to a touch of melancholia at my nest emptying out.

Other Mothers, Other Children

When I was in high school a woman on my street often included me in activities with her own children—events at the local university, drive-in movies, Fourth of July fireworks. When I wanted to take piano lessons, she told me I could practice on her piano since my family didn’t have one. At the time, I wished this neighbor was my mother and her family my family. As an adult, she was one of several women after whom I fashioned my mothering. When my friend’s daughter was in her early twenties, the two of them traveled together to India, seeing large sections of that subcontinent country by train, their sparse belongings in backpacks.

And so, modeled after my friend’s adventures with her young adult daughter, for many years I told my boys I would take them each on a trip, just the two of us, the summer after they graduated from high school. But when Claude graduated, I was seven months pregnant with Lyra, my fifth child. And he took the only fulltime position he could find, with the streets department in Charlevoix, Michigan, because even using all of my savings, which we did, there was not enough money to pay for Claude’s expenses his freshman year at the University of Michigan. The fact is, even with him working that summer we still weren’t sure how we’d cover his expenses as Lyra was born just ten days before he moved into the dorms in Ann Arbor. The poor financial timing of Lyra’s birth was compounded by her unexpected diagnoses of Down syndrome and bilateral cataracts. I wasn’t able to resume working for many months.

The truth is having an older set and a younger set of children often means letting go of previous plans, which I am not always happy to do. Having raised three young boys largely on my own, it seems remarkable I signed up for a second tour of duty. But the trade-off is a no brainer because with Max I am not raising Leif and Lyra alone and neither am I raising my older three children alone. Two more children plus a father for them all.

Having It All

“Don’t come home when your term ends. Your scholarships are paying for this trip, stay a couple of weeks longer and travel,” I told Claude after he announced he had been accepted to study spring term in Granada, Spain. We did not immediately plan a mother-son adventure because a friend of Claude’s thought he might join him. But a few weeks after Claude flew to Spain that Mother’s Day weekend, the friend’s plans fell through. The timing was bad for me. I recently acquired a second investment property that needs work before I can lease it and I rent to graduate students who mostly arrive in July. Nor was a trip financially ideal because, again, I’d just acquired a second investment property that needs work before I can rent to graduate students who mostly arrive in July.

But this I know: Timing for important things never seems ideal and money always works out.

I went to my bank and they gave me a credit card with zero percent interest for twelve months. Claude, like me, prefers traveling on the cheap because if you stay in Hiltons, how is the experience any different than just staying in the States? Using Rick Steve’s Spain, we agreed to find affordable hostals (a step above a hostel, hostals are a step below a hotel and in France they are usually called “pensions”). Max told me not to worry about my properties; he’d take care of the incoming tenants, the workers. I worried about leaving Lyra, I worried it was too much to ask of Max who, you know, also has a fulltime job. “Don’t worry about us, we’ll be fine. Go, this is just what you need.” And so I did.

Spain with My Son

Instead of pre-marital counseling, couples preparing to make a lifelong commitment should leave the country together. The challenges of travel, especially in a country where the native tongue is not that of the traveler, often reveal the essence of a person’s character. How does someone respond to lost train tickets, missed trains, difficulties finding a room for the night, discovering that the locals substantially overcharged you, the tourist, and there’s nothing you can do but pay up? All these things happened to us. When the first of them was resolved by a taxi driver running up to us with Claude’s lost notebook, in which he had stored our 200€ ($260) train tickets to Valencia, we came upon the mantra for our trip: Everything always works out.

The last time I spent two weeks alone with Claude was before my second child, Hugo, was born nearly eighteen years ago. Claude is an interior guy, which I have long, if not always, known. But without the cacophony of siblings surrounding him, it became unmistakably clear that Claude, unlike all his brothers (and his mother) does not engage in unnecessary speech. He’s not inscrutable, in fact, his company is very pleasant but he does not chatter idly. However, two topics elict animated verbosity in Claude: art and politics. Trips can either be deep or broad; we chose broad and traveled to five cities in twelve days, giving our trip coherence by focusing on art (mostly in museums, but not always). Both of us have studied art history and to talk with Claude about the work we saw was to talk with an equal. Claude knows more about pop art and artists than I do and he remembers more about other periods and movements (in all fairness to the mother, the son has studied these subjects more recently than she).

But Claude is also an artist and much of what we saw inspired him. I learned he loves Goya, especially the less formalized works the artist painted for his own home rather than those for the Spanish Court. At the Guggenheim Museum in Bilbao, Claude turned to me and said, “I wonder how much an air brush would cost?” Whoopsie Piggle’s logo on WordPress, in which rows of silhouetted faces look forward while one golden face turns upward, is a piece Claude did with an airbrush. Ironically, if not ridiculously, now that Claude has dropped out of Michigan’s art school to study English and political science, he can take the art courses he always wanted to take but couldn’t when he had to follow the school’s prescribed programming.

More surprising to me, I discovered Claude speaks Spanish quite well. Well, how is that a surprise? the reader might think, the fellow just spent two months living in Spain. Sure, except that when he was in the third grade, the psychologist who diagnosed his severe dyslexia told me not to ever expect Claude to do well in foreign language and suggested I seek an accommodation to exempt him from studying foreign language in high school. That psychologist made so many of Claude’s successes possible when she accurately diagnosed him and guided me to effective remediation options. But traveling Spain with him as my personal translator, again I was reminded that even the best experts can unnecessarily and unintentionally limit a child. “I know this probably sounds corny,” I said to Claude as we walked in the middle of a large boulevard park toward the Mediterranean Ocean in Valencia, where we were told we’d find the best paella restaurants, “but I remember when you were brand new and only had instincts for eating and voiding. You were a blank little slate and in no time here you are getting us around a foreign country speaking a second language.” Claude didn’t respond, my observation only remarkable perhaps to an adult who has watched the newborn become the child who became a man.

Síndrome de Down

“Do you speak English?” I asked the man working at a Starbucks in Barcelona across the street from architect Antoni Gaudí’s unfinished, yet spectacular church, La Sagrada Famíla. Generally, I always try to speak the language of the country I am visiting, but I did not know how to say what I wanted to say in Spanish. Probably in his late twenties, the man had short black hair and a well-trimmed, equally black beard on a face of fine bones—simply put: he was a handsome Spaniard. He told me he spoke a little English.

“Yo tengo una hija con Down syndrome,” I said and my disobedient eyes welled up. The young man reached across the counter and grabbed my hands with both of his. “I hope one day she can work somewhere like this, with such nice people.” Claude, who had gone to the bathroom, walked up and leaned in as he often did when translating for me, but he didn’t say anything. Instead, he quietly watched the barista and I exchanged sentiments in languages neither of us really knew. As we walked out the door, only then did Claude speak. He asked if I was okay. Whether my encounter with the people at Starbucks left Claude touched, embarrassed or indifferent, I cannot say.

We had stopped into the Starbucks before visiting La Sagrada Famíla so I could use their Internet to resolve a pressing matter involving the rental houses. The table where we sat with our cafés con leches was only a few feet away from the narrow end of the service counter. I could see the employees as they worked behind the counter but I did not pay attention until a young woman, who had come from a back room of the café, walked passed our table and behind the counter with the rest of the employees. I whispered to Claude that I thought the woman had Down syndrome but he was writing in his notebook and glanced up only briefly. I went back to my work too, only to snap my head up seconds later when I heard yelling and laughter. The handsome Spaniard, with the fingers of his right hand pulled together and pointed in his own direction as his hand waved like a nodding head, was laughing and yelling at the woman with Down syndrome. She, in turn, lifted her right arm and using her hand like a knife, sliced her points back at the man. I was only briefly concerned by the loud interaction in a language I did not understand (which may not have been Spanish, but Catalonian, the distinct language of that region), because the mirth between the two of them was evident as was the man’s frequent use of the word “guapa,” or beautiful, as he addressed the young woman. When she again walked passed our table, this time carrying a bus tub of dirty dishes to the back room, she was chuckling to herself.

(Note: I have never seen anyone with Down syndrome working in a Starbucks in the United States but a simple Google search found that the most identifiable coffee retailer in the world has long employed people with the most common genetic disorder.)

Not infrequently, I saw other adults with Down syndrome in Spain and consistently I observed something subtle yet, I believe, significant: They spoke for themselves. Yes, as simple as that. They spoke and others listened and responded. You see, routinely in the United States when I have spoken with adults with Down syndrome, their family members often repeat, with added details, what was just said as if the person with DS needs to be translated. Or more disheartening, which has me questioning how most Americans respond when approached by someone with DS, the family members redirect the person with DS under the mistaken assumption that listening to someone with DS bothers me. (It is important to note that neither scenario occurred in the many conversations I had with adults with DS at the National Down Syndrome Congress convention that we attended the weekend after I returned from Spain. I wonder if family members felt they could let their guard down at such an event or if in general the population who attends these annual conventions have adopted a different approach?)

Drool over Quitapenas' daily menus on Facebook.

Drool over Quitapenas’ daily menus on Facebook.

“We don’t get upset about much,” Domingo explained when I asked him about what life was like for Spanish people with Down syndrome. Along with his wife, Marta, Domingo owns Quitapenas, the best tapas bar in Toledo, if not all of Spain. The first time Claude and I stopped in, for lunch, Domingo told us in a mix of Spanish and English, “This restaurant is like your home—have some drinks, eat here and you will feel at home.” Truer words were never spoken and we not only returned for dinner that night but we changed our train tickets, the ones that had toured Toledo in a taxi without us, to eat yet one more time at Quitapenas with our new friends. “People with síndrome de Down,” said Domingo, “they are just, you know, with us. It’s not, what you say, a big problem to us.” I have not done enough research to qualitatively understand how the Spanish treat their citizens who have Down syndrome, but from my two-week observation, Domingo’s assessment seems accurate.

Launched

After ten days and four cities, Claude and I returned to Madrid and, hands down, our favorite hostal, which is owned and run by Anuncia and Sabino, the Spanish grandparents anyone would want for their own. On the terrace of the fifth floor apartment, which has just five rooms for guests, Anuncia dries the bedding on laundry lines while just inside the family canary is brought in his cage for a few hours each day to sing for the passersby on the plaza below.

“I’ve had a great time, this has been such a good trip, Mama,” said Claude as we walked across the Plaza Mayor on our way back to Anuncia and Sabino’s after my last dinner in Spain.

“Me too. You know, Claude, when we get home and everyone is there and it’s crazy and I get overwhelmed, can you just remember that this is who I really am?”

I packed my stuff, and much of Claude’s, in both my backpack and an extra bag we had purchased for the purpose of making me a pack mule. Having purchased his ticket months before we knew I would be joining him, Claude’s flight home coincided with the first day the National Down Syndrome Congress convention. As a result, I left three days before Claude and, in case he did any more shopping, I took all his extra clothes and textbooks with me. Anuncia and Sabino came to the door to bide me farewell, even though “Claudio” was staying with them another night. Anuncia kissed me once on my left cheek and then many times on my right cheek and I began to cry. Life is a succession of farewells, or “passé bien” in Spanish, and our great trip was over. For two weeks, I felt like an old me I once knew, one who had time to dwell on the creativity found in museum after museum in city after city, a person who could have extended conversations with another adult, some of which lasted for days, a person who didn’t worry much. Yes, I missed my baby, Lyra, though truthfully, I did not think about my four children back in the States all that much, I knew they were fine without me. But return I must and return I did and not only did I leave behind, for a time, this man who is my son, I also left that old me, the carefree student who could wander Europe at will soaking in and sucking down to the marrow all that looks, feels and tastes good.

I was unnecessarily hesitant to ask Claude to go with me to the airport. Unbiden he announced that of course he was going to see me off. I was glad; the Metro ride required two transfers and a confusing 3€ charge just for entering the airport from the Metro station (and again when exiting). With Claude carrying the extra bag filled with his belongings, we walked from the Metro station to the airline’s counter to get my boarding pass, a distance longer than that between most Metro stops as was the walk from the counter to security. He walked through the security queue with me until he could go no further without a ticket and then he waited as I peeled off my layers of luggage, my jacket, my shoes. While doing so, I had a wonderful, if disjointed, conversation with a man and a woman who were behind me in the security line. Claude later told me he thought they were husband and wife, but they were father and daughter. Maria had on an elegant short-sleeved dress with a fitted, cream-colored bodice and a navy skirt. Her silky, dark hair, cut in a longish bob with bangs, moved like a curtain as she darted around like the rest of us to get her belongings into the security bins for the X-ray machine.

“My daughter has Down syndrome,” I said to the man in Spanish.

“Oh, wonderful! Hey, Maria, this woman has a daughter like you!” said the man, also in Spanish.

“My name is Maria,” said the beautiful young woman as she nodded at me and smiled. I learned that Maria, who lives in the Canary Islands with her family, is the second of four children, 27-years-old and, though he needn’t have told me, it was self-evident, the delight of her parents’ lives.

Claude, though a head taller than everyone else waving from behind the security line, could not seem to see me after I had reassembled my clothes and backpack onto my body. I walked back toward security, waving my arm widely, until I caught his attention. With the queue and the security operations between us, we looked at one another and smiled. I blew him a kiss and turned to walk to my gate. I looked back one more time and there he stood, my tall son, calmly waiting for me to disappear. I did not cry.

 

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Part 3: After a Dying Week

I should be packing. I leave in less than 48 hours to join my oldest son, Claude, in Spain for two weeks of backpacking adventures. It usually takes me one to two weeks to write (and re-re-re-re-re-write) an essay before I’ll post it and yet this essay is the third this week that I’ve written, and posted, in a few short hours.

It’s those three babies.

Providence or Coincidence

It’s often mentioned in Down syndrome communities that remarkable coincidences happen with seeming regularity. For many, they seem providential. Under “Religion” on my Facebook profile, I have “rabid agnostic.” Yes, I’m a practicing Buddhist, but who am I to say one religion is more true than another. (As a religious studies major in college I was often asked, especially at parties, which religion was the most true. Truth is in the eye of the believer and followers of all faiths equally believe in what they believe.) One person’s God is another person’s universal plan is another person’s coincidence.

I work at World Market. If you don’t know it, think Pier One with food. I don’t work there often—a closing shift, one or two times a week. Then, for no explained reason, I was scheduled from noon to five the Saturday before Father’s Day. A woman came to my register with Father’s Day cards. One of them pictured little bare feet below the hem of a dress standing atop a man’s pair of shoes, presumably dancing. I took a quick glance inside the card. With every step, I love you more. Happy Father’s Day.

“Oh, my, I think I’m gonna cry,” I said and promptly teared up.

“Oh, you really are!” said the customer.

“I’m sorry. I have a daughter with Down syndrome and a baby I know died yesterday after her second heart surgery. Her family is planning a funeral now, on Father’s Day weekend.”

Yes, I chat with my customers all the time, but this was far beyond anything I typically reveal. Thoughts of Baby Fiona’s family, which had not left me since I had heard the news, did not leave me when I clocked in at work. Baby Fiona, who had a successful second heart surgery, was sent home, only to be rushed back to the hospital two days later. She died five days after her surgery. As I’ve written before, her family started Fiona’s Hope Totes a year ago after Fiona’s first heart surgery, packages for families unexpectedly spending extended stays with a child in the hospital.

“Oh, please don’t apologize,” said the customer who was about my age. She gently continued, “I had a sister with Down syndrome who died when she was only one because, back then, they couldn’t operate on their hearts like they do now. It stayed with my parents for the rest of their lives.” I looked her in the eye and apologized for her family’s loss, briefly holding the moment together before the world rushed back in and I began ringing the rest of her items while cheerfully talking to her like any other customer.

Of all people, I lost my composure with someone who intimately understood what Fiona’s death meant.

Carrying On

Baby Fiona was buried this past Friday. The day before, a member of my Facebook group (moms with babies who have Down syndrome who were born in 2012 and 2013) took a card and a check to Fiona’s family. In a couple of days, we had collectively donated over $800 for Fiona’s Hope Totes.

Baby Annie, She of the Golden Heart, about whom I also wrote in “A Painful Week in the Down Syndrome Community,” was buried yesterday. On her Facebook page her family posted pictures of her tiny, white casket. I first saw a photo of her large, guardianesque father standing near the small, white box that now holds his daughter instead of his strong arms. A photo of her mother, seated in front of the casket with one of Annie’s sisters standing next to her, showed a woman who has been through hell and isn’t sure she will ever leave.

It’s not clear whether Annie was wrongly denied a heart transplant or not. But what is clear is that people with disabilities, including Down syndrome, do not have the same access to transplant lists as people without disabilities. Discrimination against the developmentally disabled is illegal, yes, but it has been clearly established that subtle discrimination greatly affects who gets on organ transplant lists. At the core of the issue is the value of human life. Who decides and why? Is it economics? Is it academics? Is it how many widgets a person can make? What factors are weighed in deciding who gets to live and who doesn’t? Who has a chance to survive and who must die in the arms of his or her devastated family?

What a Week

Anyone need a drink after this week? TGIF. Love ya, ladies. ~a mom on (‘12/’13) Moms with Kids Rockin’ the Extra Chromosome

Gallows humor. This weekend, many of us raised a toast to the deceased babies, their families, and each other.

Meanwhile, another friend has been with her mom in hospice for weeks, posting photos of days when her mom was young and feisty, her adoring father in many of them. A good death is like a good birth; if you are lucky, you are midwifed in and midwifed out. When the mother of my heart, my father’s mother, lay dying, I could not be with her because I lived more than a thousand miles away. But I have been there for others as they lay dying and it is a gift and an honor to be there.

As sad as we are when our elders leave—I miss my grandma daily—it is not the same as losing a child. Losing a child is to completely upturn the natural order of things and never have them completely set right again. My grandma lost her only daughter, shortly after birth, due to the Rh factor. Her lifelong grief so affected me that I refused to have an amniocentesis when I was pregnant with Lyra. My grandma had four boys and I have four boys. If I had done anything to risk it, I might have lost my only daughter just as she lost hers. Magical thinking? Perhaps. Yet I have never regretted my decision.

Uplifting Site

“What can I expect with her cataract surgery?” a new mother asked me a few months ago. Like Lyra, this woman’s daughter had been born with Down syndrome and bilateral cataracts. The baby has the same team of ophthalmologists as Lyra, which means I felt comfortable telling this mother not to worry, though of course she would. Baby H did fine with her eye surgeries, though one eye needed a second surgery to remove scar tissue. Earlier this year I had been in a marketing group in which all participants had family members who are developmentally disabled. One mom explained that her daughter had once worked at a mainstream job but now worked at a county program, which was better for her daughter socially because she enjoyed being in a program where the other people were like her. Remembering that, I decided immediately upon meeting Baby H’s mom that Baby H was destined to become Lyra’s best friend because the girls have so much in common.

Baby H was scheduled for heart surgery in July. After nearly two years of living with a baby with Down syndrome, a population of which forty percent are born with congenital heart defects, and I’m used to other babies going in for heart surgery. Open heart surgery seems strangely routine, no matter whether it’s a hole in the heart or something else. Ultimately, however, Baby H couldn’t wait until July. She was hospitalized on Mother’s Day and declared too weak for her to undergo the surgery she needed to fix why she was so sick. Weeks passed and Baby H remained in Akron Children’s Hospital PICU. I asked a friend who told me after last winter’s hospitalization of my son, Jules, that her mom had a direct line to God, to please have her mom pray for Baby H.

Two weeks ago, Baby H was strong enough for surgery. The surgery took hours upon hours and when done, her heart was too swollen for them to suture her chest. They closed her up a few days later. This week, she was finally extubated and her family has held her in their laps for the first time in over a month.

I went to Baby H’s Facebook page this week to lift my spirits.

Gratitude

When we learned after Lyra was born that she has Down syndrome and cataracts, Max and I told each other, Well, at least neither is life threatening. We thought we knew what we meant and we did. Intellectually. These past ten days have broken us down. We feel connected to these children with Down syndrome, and their families, who did not make it and both of us have cried repeatedly, suddenly and at length. Lately when I look at Lyra, all I see is her her energy, pink color and robust health.

Our hearts ache for the families of Ryder, Fiona and Annie Golden Heart (she’ll never be just Annie to us). It’s not the natural order of things to bury a child and I have no doubt that these parents, like the parents of my customer at World Market, will carry their children with them all of their days. The siblings too.

Fully Human

Now what happens? Here I’ve been working on a book proposal about the need for a civil rights movement for people with Down syndrome and I had no idea that there was undeniable discrimination with regards to who is placed on the transplant lists. It just didn’t occur to me. Now learned, I will not forget. I’ll carry it with me all of my days and do what I can to end this discrimination by continuing to write about what it is we can expect from people with Down syndrome, which is far more than most people realize. Educate those who do not know what it really means to have Down syndrome, especially those in the medical community, many of whom are woefully and shockingly unaware of the facts and yet often have the power, both positively and negatively, to make a difference. Advocate for people with Down syndrome to lead full and productive lives. Defy discrimination and stereotypes with each and every success story, exploding false and outdated conceptions of Down syndrome. Educate. Advocate. Defy.

I will do it. The mamas at my Facebook group are doing it. The folks and families at the Upside of Downs are doing it. Rob and Ellen Snow at Stand Up for Downs are doing it. The Down Syndrome Diagnosis Network is doing it. Numerous large national organizations, like the National Down Syndrome Congress and the National Down Syndrome Society, are doing it. Please join us in ending discrimination against the developmentally disabled. If I haven’t convinced you yet, stay tuned. I’m on a mission.

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Part 2: Defining and Defying: Discrimination of the Developmentally Disabled

Yesterday, I wrote about three babies in our Down syndrome community, all the same age as our daughter, Lyra, who died in the same week. One of the deaths sparked many national discussions on the issue of organ transplantation and whether or not people with disabilities are equitably placed on transplant lists. While touching on the issues of soft bigotry, I want to follow up and dig a little deeper on the issue of discrimination against the developmentally disabled. Though it is illegal to discriminate against a person with a developmental disability, it is undeniable that discrimination still occurs, which should come as no surprise. Ask any person of color if the illegality of racial discrimination has provided him or her with a life of equal treatment.

Discriminating against a specified group of people is to deny that they are fully human. To have those who make important decisions—medical professionals, law enforcement officials, teachers, employers, politicians, to name a few—deem a population as lesser human inevitably results in unequal access to medical care, justice, education, jobs and protection under the law as provided to those groups who are considered fully human.

A friend reminded me this morning of the American civil rights heroine, Ruby Bridges:

Ruby Bridges, a brave little African-American girl, entered an all-white school on November 14, 1960.

As soon as Bridges entered the school, white parents pulled their own children out; teachers refused to teach while a black child was enrolled.

Only one person agreed to teach Ruby and that was Barbara Henry, from Boston, Massachusetts, and for over a year Mrs. Henry taught her alone, “as if she were teaching a whole class.”

Every morning, as Bridges walked to school, one woman would threaten to poison her; because of this, the U.S. Marshals dispatched by President Eisenhower, who were overseeing her safety, only allowed Ruby to eat food that she brought from home.

Another woman at the school put a black baby doll in a wooden coffin and protested with it outside the school, a sight that Bridges said “scared me more than the nasty things people screamed at us.”

Though it was over 50 years ago, the openly vicious hatred of a little girl simply for the color of her skin doesn’t seem so long ago (perhaps because I was born only five years later). Yet today, who would question that this was unmitigated racism or that clearly Ruby was not seen as an equal human being in the eyes of many of the white citizens of her town? And  while there are those who still believe that black children should not attend schools with white children, they are not likely to stand screaming about it on the curbside with casketed effigies of black children.

No, today discrimination is subtle, which, in some ways makes it more pernicious than what Ruby Bridges faced. For one thing, it’s harder to identify and easier for the perpetrators of discrimination to genuinely believe they are not biased against a particular group of people. Such is clearly the case with developmentally disabled Americans in need of an organ transplant. As pointed out in this article (published in 2004), in light of the Americans with Disabilities Act becoming law in 1990, developmentally disabled Americans have “moved from automatic exclusion to selective inclusion” in organ transplantation, often meeting many barriers along the way that organ transplant candidates without developmental disabilities do not face. The methods are so subtle as to be unrecognizable even by the perpetrators themselves:

There is certainly a sense…that these negative attitudes often have as much to do with not being as energetic in treating people with disabilities as it does with being actively resistant to treating them. People have been and are the victims of both benign neglect and active denial of treatment. Many respondents have been told that surgery or transplantation was just not offered to people with disabilities.

So why are some medical professionals less energetic in treating people with developmental disabilities? In many articles I have read, patients and their families report being told by their medical professionals that persons with developmental disabilities are not capable of following the intensive post-transplant care regiments or that they do not physically handle transplant surgery as well as the typical population, yet the very opposite is true.

Maybe it is obvious, but the question needs to be asked: Why are people with developmental disabilities discriminated against, which by definition means that significant (and often powerful) members of society do not see the developmentally disabled as fully human? Personally, I believe exaggerated value is placed upon one component of being fully human—cognitive ability. That people with greater levels of intelligence are considered more valuable to society and their lives worth saving more so than the lives of the developmentally disabled. Never mind that the range of cognitive abilities in people with Down syndrome is wide, never mind that any threshold of intelligence is never a predictor of a productive life. And by productive, I mean many things beyond economics, for while it is true that more and more adults with Down syndrome are entering the workforce, there is immeasurable value in how one person affects the lives of so many others.

Which brings me back to the three little ones who died in the past seven days. Their lives have touched countless people. Perhaps those of us who have had intense discussions about organ transplant policies this week will carry on the work of defeating the discrimination against those with developmental disabilities so that instead of “selective inclusion” there will be equal access to organ transplants. I sure hope so.

However, if discrimination were removed entirely from the scene, people with disabilities would still have a problem getting life saving transplants because there are not enough organs.

SIGN UP TO BE AN ORGAN DONOR RIGHT AFTER YOU FINISH THIS ESSAY.

 

 

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Part 1: A Painful Week in the Down Syndrome Community

Real Community, Virtually

When Lyra was four months old, I met a woman at a meeting for new parents of children with Down syndrome. A few weeks later, she sent me an invitation to join a Facebook group titled “(’12/’13) Moms with Kids Rockin’ the Extra Chromosome.” I remember thinking the title was a bit cumbersome, but I don’t recall what I expected when I clicked the “join” button. Not much I suspect for, at first, I hardly looked at or commented on the page. I was busy with my family, my baby and her diagnoses of Down syndrome and bi-lateral cataracts and all the adjustments that go along with any new baby. Today, I have a list of all I did not know or anticipate:

  • I thought the group was local, but it is not. Though most members are Americans, the group has families from all over the world.
  • I had not anticipated the value of an immediate and large group of moms whose kids with Down syndrome were the same age as my child and, therefore, will go through the same stages of development at roughly the same times as my child because…
  • It did not occur to me at first that this would be a lifelong group, but once it did I was floored that something like it hadn’t been created before and reminded that, for all its distractions, the Internet’s impact can be profoundly positive.
  • I could not have imagined how close I would become with some of the other moms. Back in the old days, before Facebook, I never participated in chat rooms. Even today, I do not belong to many Facebook groups. Yet there are women I have only met through this group whom I regularly turn to for input. Recently, one of the moms with whom I corresponded almost daily has largely dropped off due to a difficult pregnancy. I miss her as much as if I had a best friend living next door who moved to another state.
  • I did not know how much I could cherish the children who give us reason to have a Facebook group nor how invested I would feel in their developmental milestones. Videos of crawling, walking, talking, straw-sipping babies have me cheering in my seat at my computer as if I was watching the Chicago Cubs win the World Series.
  • I certainly did not expect my heart to be broken.

Then one week, in June of 2014, three babies died. Baby Fiona died after complications from her second heart surgery. Baby Ryder was fine when he went to bed, had a fever and rash in the morning and was gone by two in the afternoon. And Baby Annie. Baby Annie was not given a heart transplant, for reasons that remain unclear, and her family—mother, father, and two older sisters—have watched her progressively become weaker and bluer. She died early this morning.

Bad things happen all over the world each and every day and it is not humanly possible to feel the appropriate amount of grief for each loss. The deaths of these three babies hits home, however, and I do not recall a week in which I have cried so much and so hard for people I have never met, other than on Facebook.

“Why so many all at once?” my 13-year-old son, Jules, asked me as I wept over Baby Annie’s last photos. I told him I don’t know, but if a heart cannot be fixed, perhaps two years is a typical life expectancy.

The Hearts of Our Children

Forty percent of babies born with Down syndrome have some form of congenital heart disease. Some are easy fixes such as small holes that today can be surgically patched or sometimes even close on their own. Others are severe and may be beyond surgical repair, in which case the only option for survival is a heart transplant.

Baby Annie’s Facebook page stated the only thing that would save Annie’s life was a heart transplant but because she had Down syndrome, she was not placed on the donor list. The outrage of families whose children have DS has been potent. A petition appeared on Change.org asking President Obama to outlaw transplant discrimination for those who have developmental disabilities.

A day or two later, the National Down Syndrome Congress posted the following:

In 1996, Sandra Jensen, a 34-year-old woman with Down syndrome, needed a heart-lung transplant to survive. As far as anyone knew, she would be the first patient with Down syndrome to receive an organ transplant, and initially she was denied. Along with her doctor and her family, Sandra had to fight for the right to receive a transplant. The case gained nationwide attention, arguing that Down syndrome should not be enough to automatically deny a patient a transplant. Sandra won. In January, 1996, she received the requested transplant at Stanford University Medical Center. Her case was seen as a test of whether hospitals could use blanket categories to deny treatment. Since the passage of the Americans with Disabilities Act and the establishment of related federal regulations, discrimination against people with disabilities in medical treatment is prohibited.

Today, there is an internet petition (change.org) asking the President of the United States, “Why are children with Down syndrome not considered for organ transplants?” While we love grass roots advocacy, we want to set the record straight by saying it is not true that people with Down syndrome are automatically denied life saving treatment based on their diagnosis of Down syndrome today.

Making decisions around organ transplantation is a terribly complicated process, and the supply of organs for donation is quite limited. People are denied transplants for a variety of reasons. A patient who feels he is being denied solely on the basis of Down syndrome needs to appeal through the hospital system.

Make today the day you sign up to be an organ donor, and help more people receive the organs they desperately need.

Yes, organ transplantation is a complicated process with many factors necessarily taken into consideration. Yet there seems to be ample evidence and agreement that “soft” bigotry exists when it comes to placing a person with a developmental disability on a transplant list. Anecdotally, more than one mom on my Facebook group has had a cardiologist tell her that should all other options fail, a child with DS would not make it on the heart transplant list because a person with a developmental disability cannot be expected to follow through with the extensive post-operative care. (Hello? A two-year-old with or without Down syndrome is not the one responsible for the post-operative care, the caregivers are.) Yes, it is illegal to discriminate but at the end of the day the facts overwhelmingly point to inconsistencies in how doctors decide who to place on the donor lists and given the high proportion of congenital heart defects in children with DS, a disproportionately low number of people with DS make it onto the lists.

When we attended last summer’s NDSC convention, one of the biggest takeaways for me was how so many medical professionals in the United States have arcane and patently wrong notions about what it means to have Down syndrome. In the days after the convention I wrote “Fully Human and in Need of a Civil Rights Movement,” highlighting, in part, the existing discrimination against the developmentally disabled. It has been nearly a year since we attended our first NDSC convention and I have only become more aware and, yes, outraged, at the discrimination against people with developmental disabilities that continues largely unquestioned.

Max, whose professional paths, first as an English professor and later as a lawyer, have made him a stellar researcher, was on the computer until very late last night, trying to make sense of the organ transplant list issues. When he came to bed, he said, “Baby Annie will be the Rosa Parks on this issue, Holly; she will not die in vain.” I hope he is right and that the numerous conversations begun during her prolonged suffering and now, after her death, have infused momentum into individuals, groups, and national organizations to end disability bias in organ transplants.

There are so many details about Baby Annie’s medical journey that are unknown to the public. I read that a national Down syndrome organization was ready to advocate for her to be put on the list until they learned of further medical complications in her case. However, the fact that a national Down syndrome organization has as part of its mission the advocacy of organ transplants for people with DS underscores that soft bigotry is a pervasive and ongoing problem, which kills our children.

What We Can Do

Awareness is the first step to solving any problem. Please share this post, the posts of others and, certainly the articles linked here. And, as always, speak out to your politicians, many of whom may not even be aware a problem exists, just as I was unaware until these sweet babies left us.

Baby Fiona’s family started a wonderful non-profit after one of Fiona’s earlier hospitalizations. Fiona’s Hope Totes are care packages for families experiencing an unexpectedly extended hospital stay with a sick child. As of now, I believe the program is just in Minneapolis-St. Paul, Minnesota where Fiona lived with her family. I can easily imagine it becoming a national non-profit. Please consider donating to this charity to honor Fiona and help other families as they face medical odysseys.

Baby Annie was in hospice care for the last several weeks, surrounded by her family, who needless to say, did not leave her side. A fundraiser has been established to help her family. Please consider contributing to this family who has loved so hard and suffered so deeply.

And, finally, please, please, please become an organ donor today, if you have not already.

(Kimchilatkes I miss your sagacious ability to tease through complicated issues now more than ever. Your voice is sorely missed and will return, I hope, very soon.)

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Lyra’s Latest: In Need of the Next Map

Our home has been temporarily rearranged. The water bowl for the dogs and cats is now commonly found on the kitchen counter while the bathroom trash cans currently reside atop the closed lids of the toilets. A paper grocery bag containing paper recycling was handily located in the kitchen. Lately it can be found a few feet away in a lower level vestibule, which is inaccessible to the littlest resident of our home who knows how to climb up, but not down, stairs. She mastered stair ascension when she discovered the bin of bath toys hidden in the empty tub, alongside of which is a single step.

Lyra reorganizesLyra, our curious baby, is on the move and eager to exercise her self-determined mission: find all containers, empty them of their contents and, before spreading said contents far and wide, taste as many of them as possible. Hence, the reorganization of our home, something I have had to do four times before when each of my boys were curious and accomplished crawlers. She may be older than they were at this stage, but she doesn’t look it. Furthermore, her mind works just as theirs did—once a container full of clean diapers or dirty trash, toys or recycling (all equally appealing it seems), has been discovered, the site is frequently revisited.

From my earliest conception of Whoopsie Piggle, I planned to write about our entire family and not just our youngest child, Lyra, and her diagnosis of Down syndrome because her diagnosis neither defines who she is as a person nor who we are as a family. Yes, her diagnosis helps us to understand her needs in order to better meet them, just as the diagnoses of dyslexia helped us to meet the needs of her older brothers, Claude and Jules. In fact, in the past few months it has been harder to write essays isolating the latest in Lyra’s life. On occasion we have bigger issues to address, but most days are entirely mundane and typical of any household with a crawling baby. Lyra is no longer brand new. She exhibits a fully formed personality with many things that make her giggle (her brother Leif, getting tossed in the air, singing to the pretty baby in the mirror, kisses on her neck) and others that make her howl (diaper changes, bedtime, hunger, blood draws, contact lens changes). Lyra is an integrated and integral member of our family. Certainly she has made great developmental strides thus far this year and yet this fact makes her seem all the more typical and her accomplishments less, not more, noteworthy.

A Babyhood of Appointments

The first few years of life for a child with Down syndrome often require regular interventions in order to acquire well-developed gross motor skills (sitting up, crawling, walking, running) and fine motor skills (i.e., purposeful hand skills such as self-feeding), and speech. The common culprit underlying these delays is not necessarily a cognitive issue, but hypotonia, or low muscle tone, which affects almost all babies with Down syndrome. In talking with parents of older children with DS, including adult children, many recall the constant work in the early years of their child’s life. Since she was three months old, Lyra has had regular therapies (speech, physical and occupational). For the last six months, she has gone twice a month to Akron Children’s Hospital for what they call an “infant block” in which all three of her therapies are conducted back-to-back by a team of therapists who discuss and coordinate her care.

When older children and adults receive therapies, as many people do after an injury or medical event, the therapist trains the individual. But when the client is a baby, the therapists train the caregivers more than the client. Yes, Lyra recognizes her therapists and knows her way around the room where they conduct her appointments. But to Lyra therapy must seem like a play date. The occupational therapist blows soap bubbles for Lyra to pop with her forefinger, the speech therapist looks into a mirror with Lyra as together they sing songs and practice sounds, and the physical therapist pulls out toys that engage Lyra so deeply she doesn’t notice she had to climb a small hill or stand up on her own to reach whatever bright, noisy (and oh-so-non-Waldorf) plaything the therapist uses as bait. And then we try to replicate it all at home.

Meanwhile, back at home, Lyra is also visited by her Summit County Developmental Disability Board caseworker and her Cleveland Sight Center caseworker, both of whom observe her progress and also make recommendations, generally taking into account our home environment. For example, instead of buying an expensive Little Tikes climbing wall, as Lyra’s pediatrician had urged, they helped me arrange the tumbling mat we own over some pillows, which Lyra now repeatedly climbs up and over.

Sometimes the folks coming to our home tell us the very same thing I hear at the hospital. Other times, they do not. For example, after Army-crawling for three months, Lyra began crawling on her hands and knees and soon thereafter she started what we call “bear-walking,” or walking on her hands and feet. And even though it has given Lyra a speed and facility at dumping out trash, recycling, toys and whatever else she can find, we have been rooting her on. It’s thrilling to see her motor around and the hospital’s physical therapist agreed. Her caseworkers were less excited. Sure, it’s great that she’s getting stronger and moving. But her back legs were being held too far apart, like an upside down wide V, putting pressure on her hip sockets. Along with hypotonia, people with Down syndrome commonly have ligament laxity and by stressing the exterior of her hip sockets, the caseworkers explained, Lyra can wear down her ligaments thereby opening the door for a host of other issues, including chronic pain.

The solution? Hip Helpers. We used these many months ago, when Lyra was learning to sit up on her own, but they were all but moth-balled since Lyra took off Army-crawling in January. Like a pair of tight spandex shorts, Lyra’s daycare provider and I both refer to them as Lyra’s “Spanx,” the modern day equivalent of a girdle. Hugo calls them Lyra’s “mermaid thingies” as they keep her thighs together like a big fish tail. Under her dresses and skirts, Lyra’s Hip Helpers look like baby shorts, stylish even. With them on, however, she cannot zip around as easily. For now, that is. The goal is to retrain Lyra’s legs to move correctly, and not splayed out, as she ambulates, something she is highly motivated to do (so many trash/toy/recycling bins, so little time).

For two weeks, Lyra wore her Hip Helpers all day, every day. Then we had our next Infant Block appointment at the hospital where the physical therapist pointed out that Lyra locked her knees more when wearing the Hip Helpers. Also important, the hospital therapist questioned making Lyra struggle with a skill she had just acquired (bear crawling). And so, we agreed upon the middle path (or the Buddhist take on pretty much everything)–not too much, not too little and, as of this week, our busy monkey spends about half her days in her Hip Helpers.

Speaking with a Star

I just saw an adult with DS at the movie theater and I wanted to run up and hug him. It was like a celebrity sighting LOL. Is that just me?

~A post on a Facebook group for mothers with babies born in 2012 and 2013 and diagnosed with Down syndrome.

Comedian Rob Snow and his wife, Ellen, who live in Northeast Ohio, founded the non-profit organization, Stand Up For Downs. In his routine titled, “We Need a Sign,” Snow describes a walk he took shortly after his son Henry was born with Down syndrome. When Snow saw a family of children running and playing in their yard, including a girl with Down syndrome, he was momentarily riveted as he watched the girl doing and being everything any other child her age would do or be. When the children ran off, Snow noticed a woman, presumably the girl’s mother, looking at him with irritation, if not outright anger. She thought he was a rude gawker. The moment was awkward and Snow quickly walked away without explaining that he had a newborn son with Down syndrome. We need a sign to let one another know, “Yeah, me too, my child has Down syndrome.”

I laughed throughout most of Snow’s routine at a new parent event sponsored by our local support group when Lyra was only a couple of months old. But as he described staring at the girl and not finding a way to talk with her mother, color rose up my neck and my ears became hot with embarrassment. When Lyra was perhaps a week or two old, we had taken her and the boys to Five Guys Burgers for lunch. Asleep in her car seat, Jules sat with Lyra at a table while the rest of us got in line. Behind us, but separated by another group of people, was a family that reverse-mirrored our own—instead of four boys and a baby girl, they had several daughters and little son, who appeared to be about Leif’s age, which was two-and-a-half at the time. Leif and the little boy pushed the red cordon, hung between posts to form an orderly queue at the restaurant, with their hands to make it swing back and forth. The two little boys were twin-like–they stood at the same height, had equally white-blonde hair, and deep blue eyes. But the other little boy’s eyes had the characteristic shape associated with Down syndrome. Staring does not describe my behavior. I scrutinized the child, who had on a red zip-up hoodie from the Gap and blue jeans, an outfit nearly identical to Leif’s, and only tore my eyes away to shyly smile at the child’s father, a big man with a beard who smiled in return. I wanted desperately to tell him and his wife that my new baby had been diagnosed with Down syndrome but I was uncharacteristically struck speechless.

In the first few months after Lyra was born and we learned she has Down syndrome, I regularly wondered how having an extra chromosome would effect Lyra. Would she talk? Would I be able to understand her? Would she develop like other children or would she be a perpetual infant? I did not know and nobody could tell us. Sighting an older child, even one who was only two or three years old, when Lyra’s life had just begun, loosened my mind’s grip on my worst fears by showing me: This too is possible, a child more alike than different.

Last weekend, we were seated in the waiting room of the lab at Akron Children’s Hospital where we take Lyra quarterly to have her blood drawn for a thyroid level check. A woman and teenaged girl with Down syndrome walked in and I (rudely) listened to the mother give her daughter’s date of birth to the receptionist. The girl had recently turned fourteen, which makes her only a couple of months older than our son Jules. With Lyra in my lap, the mother and daughter began talking to us before they sat down.

“She loves babies,” said the mother.

“Yes, I do!” said the daughter.

When the phlebotomist called for Lyra, Max took her back while I stayed and talked with the two women, and a pattern I’ve now seen many times emerged: the daughter spoke and then the mother repeated and/or clarified what her daughter said.

Me: I love your nail polish.

Girl: My mom did my toes, but I did my hands.

Mom: I did her feet, but she did her fingers, well, most of them I see. She’s so             independent; she tells me all the time, I’ll do it myself!

Me: What grade are you in?

Girl: Seventh grade. I love school, I’m a cheerleader.

Mom: She’s in the seventh grade; it’s a great school. They have a cheerleading squad called the “Sparkles.”

Girl: Yes, I’m a cheerleader.

Mom: She’s like a rock star at her school, seriously.

We stopped talking when Max brought out a sobbing Lyra with both elbows wrapped in Day-Glo pink cling tape, used these days instead of Band-aids to hold a gauze compress at the site of the blood draw. They had not been able to get a sample of Lyra’s blood and Max described a scene I’ve witnessed all too often in which the phlebotomist sticks Lyra’s arm with the needle but cannot find the vein and begins grinding the needle around in her arm in an attempt to locate the vein. We were told to bring her back on another day for another round of this torture.

As I begin comfort-nursing Lyra, the girl I had been talking with was called back for her blood draw and in what seems like less than a minute, she’s back out, tear-free.

“Wow, that was fast!” I told her.

“Yeah, I’m a big girl,” she said and Max slapped her a high-five.

Right Before Our Eyes—What We Did Not Know

“20/270, that eye is legally blind and 20/180, that eye is what they call ‘legally visually impaired’ but any school district would categorize her as legally blind,” said Lyra’s vision specialist.

“That’s with her contact lenses in?”

“Oh, yes. Without the contacts—well, she has no lenses inside her eyes, as you know, and without the contacts, it would be much worse.”

“But how can this be? Every time we see the ophthalmologist, he tells us her eyes look great and that he couldn’t be more pleased. And she sees us, the things she plays with. I mean, she certainly moves from one side of the kitchen to the other to get to the bag of paper recycling. Is it just that she remembers that it’s there?”

“Well, certainly her memory is helping play a role in how she uses her vision. This is a very non-medical explanation, but imagine what you see at 270 feet, she would need to be only 20 feet away to see the same thing. And I like to tell my parents that it is like a big funnel. Right now, Lyra is looking at the big world around her, but as she begins to focus on holding a crayon, writing, reading—really narrowing her field of vision for specific tasks, her visual limitations will become more apparent.”

I paused and thought of something I had long noticed: when Lyra is in my arms, her eyes are wide open, big and blue and often staring into my own. But when she is more than a couple feet away, she squints. I have a hard time capturing her in photos without her squinting, but usually when I am taking her picture, I am more than a couple of feet away. Just as when I try to read the clock in the morning without first putting on my glasses, Lyra squints in an effort to see more clearly.

“So what I want from you now,” I said, my voice becoming husky as I grabbed a tissue to mop the tears suddenly springing out from behind my glasses, “is for you to look into your crystal ball. Like, does this mean she’ll walk with a cane?”

“Well, first of all, I think her left eye is already better than when this last test was taken. And we have until she is about age five or six for her eyes to improve. Now when she starts walking, she’ll probably have glasses as well as her contacts because she’ll need the glasses to give her the ability to see in the distance, like a bifocal.”

“Okay.”

“But it’s good she’s crawling for so long because she is learning where all the bumps are in your floors.”

“Wow, so I guess we can never move from this house.”

“Nope,” said the vision specialist and smiling playfully she added, “Nor can you ever move the furniture.”

“So what about when she’s out? She will need a cane then?” The notion of Lyra walking with a cane suddenly became emblematic of everything I feared about her being blind: With just a glance, anyone would recognize her two disabilities for which she may be unfairly assessed as not capable of any number of things she deserves, including employment, housing, and civility.

“Well, I can’t say for sure, but I don’t think so. However, we will teach her techniques, such as sliding the outside of her hand, with her fingers cupped so they don’t get caught behind things like fire extinguishers, alongside the wall of a room she’s unfamiliar with so she’ll not run into things.”

“Ahh,” I say as it all starts to click.

All We Can Handle

I’ve long known that Lyra’s ophthalmologist does not like to talk about Lyra’s vision, or about what procedures, or outcomes to anticipate. I know this because he’s told me as much. I chalk it up to needing to wait and see how Lyra develops. If she does great with contact lenses, stick with contacts and avoid more surgery. At her strabismus surgeries last summer, her ophthalmologist told us that as she got older he would be able to put her in different, less bulbous, contact lenses. Her vision was corrected for the world of a baby, roughly up to two feet away, but he said that he’d change her correction as she got older and began walking.

Because of these conversations, we believed all along that Lyra was seeing, well normally, like most any other baby. Instead she’s legally blind. I only worried about it when another mother wrote to me, a woman I do not know but who recently was put in touch with me by a mutual friend. This woman’s son, who is a few months younger than Lyra, was also born with bilateral cataracts and now sees at 20/60 and 20/90 and she was worried about what his future would be like. I wrote and told this mother what we are doing for Lyra but never heard from her again and I wonder if it isn’t because Lyra’s vision is substantially worse than her son’s vision. Her letter inspired me to call Lyra’s vision specialist and ask her to sit down and tell me what a vision acuity score of 20/180 and 20/270 mean for Lyra long term.

I imagine had the ophthalmologist told me in detail at Lyra’s first surgeries, more than a year and a half ago, what we would be facing when she was older, it would have overwhelmed me or, at the least, been so much information on top of the information we needed in the immediate moment, that I would have forgotten much of what he said. To be honest, perhaps he did tell us much of what we now need to consider and it did slip into the cracks of my overloaded brain.

Climbing mountains, no matter how high, happens one step at a time.

Normal Is As Normal Does

Lyra will turn two in August. She talks, uses sign language, plays with her brothers and her daycare friends, sings songs, makes animal sounds on her own and when asked, crawls, “sorts” laundry, pats my back just as I pat hers, just as all my babies often patted my back when held up to my shoulder because that is what I do to them. Lyra’s daycare provider could not love Lyra more if she were her biological niece. Everyday of her life, everywhere she goes, Lyra is encouraged to move her body in ways that will protect her health long-term, and avoid issues such as displaced hips and pronated feet.

We did not anticipate how musical Lyra would be when we gave her a name related to the word “lyrical.” Perhaps the name was providentially chosen for nothing pleases Lyra more than singing. Much of her speech has developed through song, she is calmed by song when sad and I even use it as part of my arsenal to distract her when need be. Placing her in front of the mirror on my dresser, Lyra and I sing together while pulling her hair back into a ponytail, something she otherwise resists.

For several weeks, Lyra’s team, including everyone in the family, her therapists and her daycare provider have talked about how it’s coming together beautifully for Lyra and all the progress she has made and continues to make. At Akron Children’s Hospital, the therapists tell me, each and every visit, what a thrill it is for them to see what new things Lyra has learned since her previous visit.

Learning Lyra is legally blind was not devastating, but to use a cliché, I felt the wind drop from the sails of all that wonderful momentum in Lyra’s development. This too? Isn’t Down syndrome enough? But that is me feeling sorry mostly for me and not Lyra who, after all, only knows what she knows. For her, life is full of loving people and good times. She’s as happy as a baby should be and not moping about because she has to work harder to crawl and can’t see as well as anyone else she knows. Again, for now at least, she isn’t aware of any differences. Who knows how she’ll feel one day when she does realize how her life is different? My personal experience now having met so many people of all ages with Down syndrome, as well as the scientific research, gives me every reason to believe Lyra will be happy with who she is.

So we breathe in, breathe out and pick up the phone. First call: The ophthalmologist to learn what we can do to improve Lyra’s vision before she turns five years old. Second call: The vision specialist to learn what compensatory techniques Lyra can begin learning now.

And, as with all things, our journey continues. One step at a time.

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