Family’s tragedy shows need for sentencing reform, affordable childcare

February 24, 2019August 7, 2022 whoopsiepiggleLeave a comment

The grisly murder of Washington Post columnist Jamal Khashoggi, allegedly by order of his country’s de facto head of state, Saudi Crown Prince Mohammad bin Salman, caused me and many other Americans to finally recognize the horrific genocide occurring in Yemen, also by bin Salman’s order.

One dramatic event can shed light on a greater, if not systemic, problem.

Here in Summit County, the sentencing of Wynter Parker’s parents for her accidental death is such an event. Her parents’ felony convictions and prison sentences will not bring Wynter back. Nor will they vindicate her tragic, but absolutely accidental death.

My last column responding to Tierra Williams’ and Dariaun Parker’s prison sentences generated more responses from readers than any other column by fourfold. More than half of them wrote “There but for the grace of God go I” letters like this one:

“I once returned home from a doctor’s appointment to find my naked toddler walking down the street. My son, who is now 54, had unlocked the door and went on an adventure while his father, who had worked the third shift, sat sleeping in a chair. Had he intentionally abused or neglected his child? NO … though he did get quite a lecture, he was devastated. I pray the court will rethink their awful sentence and allow this family to reunite and gather their lives after their terrible loss.”

Many readers saw institutionalized misogyny in the charges and sentencing. Like me, they surmise that if the situation had been reversed — had the mother been home when Wynter slipped outside, and the father had returned from errands and then done everything he could to save his child — the father would not have been charged.

And many readers saw institutionalized racism, as do I. I don’t believe that if my daughter wandered outside and died of hypothermia, my husband and I would ever be charged with a crime, because we are white, middle-class professionals.

It is tempting to vilify Judge Alison McCarty for her egregious sentence and finger-wagging, telling the parents, “That’s an untenable situation,” referring to Williams driving to clients’ homes to style their hair while Parker worked on a musical career for which he had yet to earn income. “Not a lack of love, a lack of attention. Not all of the time, but some of the time, which put both of the children at risk.”

Untenable is what America expects of its working poor. On the same day my last column was published, the New York Times ran a piece by Katha Pollitt, who believes universal affordable day care would create more economic mobility than universal free college tuition. The Economic Policy Institute’s recent state-by-state analysis of the annual cost for infant care found it is often comparable to, if not more expensive than, annual tuition at a state college.

Pollitt states that parents “on tight budgets may be forced to seek informal, cheaper care. A neighbor … might be a godsend — or she might just plunk her little charges in front of the TV, take too many children or not know how to handle an emergency.”

Last Sunday, Catherine Rampell’s column in this paper pointed out that women’s issues are economic issues, including affordable child care. However, “policies that affect mothers’ ability to work are too often framed as being mainly about fairness, feminism, personal fulfillment and family bonding.”

Wynter Parker’s parents, like all working poor and middle-class families, could use policies that extend fairness and family bonding while also making good economic sense.

Finding a job

Also untenable is a legal system that makes gainful employment for working poor families nigh impossible. Thanks to the folks at Community Legal Aid and the University of Akron Law School’s Reentry Clinic, I’ve learned much about felony convictions in the past two weeks.

Felony convictions substantially limit opportunities for employment after release. As one reader wrote, “I was in retail management for years. When looking at applications, the minute our eyes went to ‘felony conviction’ the app went in the dead file.”

Williams and Parker first pleaded not guilty to the charge of child endangerment, a third-degree felony. That seems reasonable, as Wynter’s death was accidental. But before sentencing, they switched to guilty pleas, presumably on the advice of their attorneys.

A person with a felony conviction for child endangerment is legally ineligible to work in 616 types of employment in Ohio. Some convictions are eligible to be expunged, or to have the records sealed a year after the sentence has been served. But not child endangerment.

The prosecutors, knowing the lifelong effects, sought a felony conviction not only for the father who was with the child when she wandered, but also for the mother who was not, and who did everything possible to rescue her daughter when she found her.

Effectively, the felony conviction of Wynter Parker’s parents has probably sentenced her two siblings to childhood poverty.

Williams and Parker could have been convicted but not sentenced to prison. That they were likely gave Wynter’s siblings additional life sentences of poverty. According to the Pew Charitable Trusts, “two factors influenced by parental incarceration — family income and children’s educational outcomes — have direct implications for children’s future upward economic mobility. The growth of incarceration in America has intergenerational impacts that policy makers will have to confront.”

Plight of the poor

Last Sunday at Westminster Presbyterian Church, Pastor Jon Hauerwas reminded congregants that, “Jesus was a poor man. He was one of them. And so, he spoke empathetically about the plight of the poor.” The prayer of confession that day included, “We have not stood by those who are hated, bullied or excluded. Comfortable with the way things are, we are too complacent, even complicit with injustice and prejudice.”

In response to American outrage at the murder of Jamal Khashoggi, Congress is now reconsidering America’s relationship with Saudi Arabia as it relates to Yemen.

For those who are outraged by the sentences given to Williams and Parker, I encourage you to no longer be complacent, lest you be complicit in unjust sentencing of life in poverty and limited opportunities, not just for this family, but any family who tragically loses a child to an accidental death.

We as a society can support families rather than seeking a pound of flesh. In some cases, Children Services may need to supervise after an accidental death, until it believes affected families are appropriately able to care for their remaining children.

We can seek sentencing reform. I petition my state representative, Emilia Sykes, and my state senator, Vernon Sykes, to craft legislation that would limit, if not eliminate, felony charges for the accidental deaths of children. Rather than seeking retribution, guidelines should be crafted outlining appropriate measures to take, and services to provide, when a family loses a child due to an accidental death.

And we can advocate for affordable, quality child care, so poor parents have the support they need to lead productive lives, which has the potential to lift them and their children out of poverty.

As for Williams and Parker, they can petition Gov. Mike DeWine for clemency, and I strongly hope Williams does. Beyond that, a year after they complete their full sentences, including parole, each can apply to the county courts for a Certificate of Qualification for Employment (CQE). In theory, if granted, this certificate would prove to potential employers that the parties have been fully rehabilitated and should be considered for employment.

Lyra attempting to escape, yet again, last week.

To find your state legislators, go to https://openstates.org/find_your_legislator. Write to them for change and you’ll feel better than you have since learning of Williams’ and Parker’s convictions and sentences.

Question: Why do amusement parks, fairs, even some shopping malls have “Lost Child Centers,” essentially child recovery offices?

Answer: Because in the blink of an eye, any child can and often will wander out of sight.

This column was first published in the Akron Beacon Journal on Sunday, February 24, 2019.

Prison sentence for child’s accidental death benefits no one

February 8, 2019August 7, 2022 whoopsiepiggle2 Comments

My daughter, Lyra, has become a runner. I don’t mean she’s racing fellow kindergartners in track, but like with many children with Down syndrome and autism spectrum disorder, she takes off with no regard to safety or even a destination.

I have written about her running and all that we’ve done to keep her safe, from making our doors impossible for her to open to strapping a GPS monitor belt on her that lets us know if she’s left our property.

Thanks to neighbors, strangers and the Akron police, Lyra has returned home safely each time she has run. But what if, God forbid, she was struck by a motor vehicle? Or wandered to a nearby pond and drowned? What crime would her father, Max, and I have committed?

Years ago, when a friend of mine was in medical school, she dropped off her two older children at preschool before driving her baby to daycare. When she arrived at the daycare facility, she discovered the baby was not in her car.

My friend, who went on to receive an M.D.-PhD., is very smart and extremely competent. But raising three small children while attending medical school was demanding, if not overwhelming. My friend had no idea where her baby could be that day. Had she left her in her car seat in the parking lot at the preschool?

Trembling, she returned to the preschool. She found the baby asleep in her car seat on the floor of the preschool classroom, a fortress of cardboard bricks built around her by the young pupils.

One winter’s evening, a friend of mine who is an artist put his 3-year-old daughter to bed before returning to his studio to work. While the studio was attached to the house, it also had an exterior door used by customers.

Much later that evening, my friend was shocked when someone knocked at the door. He opened it, and there was his little daughter in her nightgown and boots. No coat, hat or mittens. She’d taken herself to the swing set, played and then toddled to the studio door when she became very cold.

But what if my friend hadn’t gone to the studio that night? What if he’d gone to bed and hadn’t heard his child knocking? She would certainly have died before morning. What would have been his crime?

On Feb. 2, 2018, 2-year-old Wynter Parker wandered outside on a day when the temperature didn’t reach above 19 degrees. She had been at home with her father, Dariaun Parker, then 23, who had been up all night recording music. Sleep deprived, perhaps he nodded off because it was Wynter’s mother, Tierra Williams, who found her.

Williams, who was then 22, had been running errands with the couple’s 4-year-old child. When she returned home and found her daughter outside, she immediately wrapped the girl in blankets and called 911. Tragically, Wynter died from the effects of severe hypothermia.

In articles, including in this paper, county prosecutors state that neighbors called the police before because the couple’s children were outside unattended. But the authorities did not report the family to Summit County Children Services, which they are required to do when they believe children are endangered. Lyra has run three times, and the police have been called each time. Children outside unattended is not a crime nor, in all instances, necessarily negligence.

There are parents who brutally beat their children and some who murder their own babies, or murder the children of romantic partners. Those people should be prosecuted to the fullest extent of the law and prevented from ever harming a child again.

But what of a mother who leaves her daughter with the child’s tired father? Or the tired father who agrees to stay with the child? And that one time everything goes completely wrong and the child dies not because of any malicious intent on the part of either parent?

More than 36 children die each year in the U.S. from vehicular hyperthermia, or heat stroke, because a caregiver leaves them in a car on a hot day. Compared to a child who wanders away, the parent who leaves a child in a car is an active agent in the child’s death. It’s the parent who buckles a child into a car seat and then forgets to retrieve them.

The worst punishment a parent can suffer is the death of a child. Perhaps that is why the judge overseeing the case of a 6-month-old’s death last summer in Medina from vehicular hyperthermia sentenced the baby’s father, 22-year-old Christopher Lee Stewart, to two years of probation. Stewart did not intend to harm his child. That she died due to his actions will likely haunt him all his days.

Dariaun Parker and Tierra Williams, however, have been sent to prison for their daughter’s death. Two years for Parker and 18 months for Williams, neither of whom had a criminal record, nor, as far as any news reports reveal, did they have any reported history of drug or alcohol abuse.

Judge Alison McCarty, who sentenced the parents, told them she would consider granting them an early release, which they can request after serving 30 days because they received sentences of less than two years. The decision on whether to grant the early release will be up to McCarty.

There isn’t a parent alive who hasn’t had a heart-clutching moment when realizing if a situation had gone even a little differently, great harm would have resulted. My daughter who runs, my friend who couldn’t remember where she’d left her baby, my other friend whose daughter wandered outside on a winter night. And many more stories of my own and others.

Should Williams and Parker have received supervision from Children Services after Wynter’s death? Absolutely. But how does sending them to prison benefit society? We live in a country that does not believe in free, quality childcare for our working poor but now we will pay a total of three and a half years of prison costs, approximately $30,000 a year.

As for punishment, their daughter died.

And what crime did the couple’s other two children commit? For they, too, are being punished. According to Creasie Finney Hairston, professor and dean at the Jane Addams College of Social Work at the University of Illinois, “The arrest and removal of a mother or father from a child’s life forces that child to confront emotional, social and economic consequences that may trigger behavior problems, poor outcomes in school and a disruption or severance of the relationship with the incarcerated parent that may persist even after the parent is released from prison.”

Judge McCarty didn’t have enough compassion for the remaining children to at least sentence the parents consecutively rather than concurrently.

So I ask, what crime did these parents commit that merits the additional destruction of their lives and the lives of their other children, not to mention the expense to the state, by incarceration?

This column will appear in the Akron Beacon Journal on February 10, 2018.

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Finding joy in a cold, snowy winter

January 29, 2019 whoopsiepiggleLeave a comment

If you want someone to blame for last week’s weather, look no further. For several months, I have been using all my mojo to call up a hale and hearty winter in Northeast Ohio. I began doubting my powers as we slogged through a muddy autumn and early winter. But then, success! A large polar vortex broke apart, sending one section straight down from Canada to the Midwest.

I feel most alive when outside on a crisp winter’s day. The air is void of pollution-trapping humidity and with each inhalation my lungs quickly warm frigid air. Bundle up to shovel, sled, cross-country ski or walk the dogs in deep snow, and soon clothes are coming off. Even on bitterly cold days, if the sun is strong and the wind low, it’s easy to stay warm.

Give me hard winters and mild summers over mild winters and hot summers. For when it’s hot, there’s only so much you can take off.

I suppose there are location-bound Akronites, here because of jobs or family. But I chose Akron and part of what I love about this place are the (typically) snowy winters. I lived in Columbus for 10 years where winter is six months of dreary skies from which white stuff occasionally drops and promptly melts. Freezing rain rules Central Ohio winters, and there’s nothing fun about freezing rain.

But snow, oh, my! In the snow belt across the nation, kids build snow forts and snow creatures (we had a 15-foot dragon one year) and enjoy pelting one another with snowballs.

Leif and Angus at the Sand Run Park sledding hill on MLK Day.

Here in Akron, we can do even more with our snow. The Summit County Metro Parks have sheltered fire pits at their many sledding hills and skating rinks. Granted, the skating rinks require more than snow, they need frigid temperatures, which is one more reason to call down a polar vortex.

We also have great skiing here. Sure, the slopes at Boston Mills and Brandywine aren’t the Rockies, but guess what? My kids can ski at resorts with large slopes because they learned how, starting at age 7, in the very affordable school ski programs BMBW offers. When Claude and Hugo each turned 18, I bought them their own downhill skis, which they’ve taken to various slopes across the country.

Beyond the fun of our wintry winters, they are also vital. Frigid temperatures are the bane of invasive species — both fauna and flora. Brown marmorated stink bugs, emerald ash borers, gypsy moths, hemlock woolly adelgid and more destroy trees and crops across Ohio.

Indigenous animals evolved with indigenous plants. When invasive plants take over habitats, they crowd out native species, thereby denying food resources to Ohio’s wildlife.

Like most invasive bugs, invasive plants also often originate from temperate climates and die back in cold winters. Japanese honeysuckle, bush honeysuckle and common privet are all invasive plants. So, too, is purple loosestrife, phragmites (common reed), garlic mustard, autumn-olive and more.

Many invasive plants were introduced by gardeners. These include ornamental pears and Buddleia, the butterfly bush, which does not feed the butterflies found in Ohio. Please consider removing cultivated invasive species from your gardens and replacing them with beautiful native plants (or even non-natives that aren’t invasive).

Fungus is another problem addressed by cold winters. Bat and amphibian populations have been devastated by fungal infestations due to mild winters. Who doesn’t love to hear spring peepers heralding the renewal of life each spring or watch bats swoop in the skies on a summer’s eve, clearing out large quantities of mosquitoes? I do.

And then there is my dark side. I derive a nearly perverse pleasure when imagining the death by cold temperatures of three of Ohio’s native pests.

Number 3: Poison ivy. After a stern winter, this noxious sumac is not so glib the following spring and summer. It stays where it should, in the darker recesses of wooded areas, rather than running amok as it will after a mild winter.

Two of my boys are terrifically allergic to poison ivy. Fun fact: pregnancy can change the immune system of women, including their allergy status. The visceral feeling of running hot water on a poison ivy rash is indelible. But I’ve not experienced it since the birth of my eldest child, 25 years ago.

Number 2: Ticks. After 2 consecutive mild winters, I found the blood suckers on my pets every month in 2018. Granted, I walk my dogs in woods and fields most days, but I pulled off ticks, which look like grayish kernels of corn after a day of feasting on a host, almost daily last summer. I found the last tick of the year on one of our cats on Christmas Day.

Number 1: Fleas. When I was a girl, I remember my mother whispering that one of our neighbors had fleas. She indicated fleas infest homes that aren’t very clean. It’s true I will never win the Good Housekeeping seal of approval for a spotless home. But a spotless home isn’t healthy either. Nor does the dirt bring the biting beasties inside. The pets do, particularly cats.

For many years, we had one cat. His name is Boggart, but I referred to him as “Last Cat.” Then, in June 2017, at the house where Max has his law office, a feral cat had six kittens under the front porch. We found homes for three and kept three.

Last summer, another litter of two kittens was born under the same porch. We were able to catch only one.

“I’m going to call him Cuddlebug,” said Leif, who is the only one small enough to crawl under the porch and retrieve kittens.

Our four recent additions to the family.

“We’re not keeping him, Leif,” I said as we drove the kitten home to clean him up. Yet now there are five cats. (I swear we aren’t hoarders, but feel free to call us weird cat people. It puts us in good company.)

For several weeks last summer, the back of Leif’s legs looked like he had chicken pox, so dotted were they with flea bites. All of the over-the-counter flea treatments that worked in prior years failed. For three months before the first frost, I spent $140 a month on prescription flea treatments from our veterinarian. Those fortunately did the job, making them worth every penny.

So revel with me over the beauty, fun and environmental function of this glorious winter. And in wishing a frozen pox on our native pests.

This was first published in the Akron Beacon Journal on Sunday, January 27, 2019.

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The Golden Rule of Parenting: Just Show Up

January 13, 2019 whoopsiepiggleLeave a comment

When I met the big boys’ father in the early 1990s, he was a young architect. He worked at a drafting table with draftsmen’s pencils shaved into fine points with specialized sharpeners. I can still hear the whir of his leads spinning to precision, the mechanical sharpener held in one hand, the pencil in the other, white shirt sleeves rolled up just past elbows.

His blueprints were produced little differently than those of Howard Roark, as played by Gary Cooper, in the 1949 movie “The Fountainhead.”

Not long after our first child, Claude, was born, his father learned to draft in CAD, or computer-aided design. The pencils, sharpeners, drafting table and true blueprints became instantly obsolete.

Boston, 1995. I carried baby Claude, either in a backpack or a sling, throughout a city in which I knew nobody and where few locals were receptive to people whose ancestors hadn’t fought in the Revolutionary War. Three days a week, Claude’s father left extra early for work to receive CAD lessons from an officemate.

We moved back to Ohio soon after Claude began walking. In his home office, I watched my then-husband slide his mouse across a pad to open boxes on his computer screen, click and drag images around until buildings took shape.

Contemporaneously, hand-painted animated movies, many stunning works of art (see the opening scene of Disney’s “The Fox and the Hound”), gave way to the precision of computer-generated imagery. With every step forward, something must be left behind. Are today’s architecture students even required to draw by hand?

The boys’ father wanted to be an artist, like his mother. His father wanted him to be an engineer. The dilemma was solved when he decided to become an architect.

Like me, the boys can hardly imagine their father sitting down without him drawing with whatever was available, be it ink and sketchbooks or crayons and newsprint.

The boys went to schools in Akron that emphasize the visual arts, from the Waldorf School, which is why we moved to Akron, to Miller South School for the Arts and, finally, Firestone High School’s School of the Arts.

My sons draw both intricately and with the looseness of people comfortable doing so. Claude’s first major at the University of Michigan was art and design. The month before his first semester, I spent all my savings, about $5,000, buying the computer and software suite his program required.

Claude switched his major to English literature before I ever saw him working on computer design. Instead, Jules was the first of my sons who reminded me of watching my ex-husband design on the computer.

Working in the biology department at the University of Akron last winter, Jules developed, with much trial and error, a tool to extract pollen from the anthers of a specific plant. Once collected, the pollen grains were counted. After hand-drawing his ideas, Jules drafted them on the computer, using free software.

“Would you ever want to contact your father and ask him about computer drafting?” I asked Jules.

“No,” he responded promptly. “He’d just make it all about him.”

My ex-husband lives two states away. He never contacts the boys, even when he’s in Ohio. It’s been nearly four years since they’ve seen him.

Once there was a boy who could draw. His talent was innate but also influenced by spending time with his mother, a trained artist. Somewhere on his path to adulthood he lost his way, becoming less like his mother and more like his father.

Recently, Claude had the opportunity to pitch a brochure design for an Akron governmental office. He worked on it using the now-outdated version of Adobe Illustrator that was part of the software package purchased seven years ago for college.

Wanting feedback on his brochure from Max and me, Claude brought over his laptop the night before it was due. As I heated up a plate of leftover meatloaf, mashed potatoes and green beans for him, Claude’s program crashed, and he lost most of his work. Two weeks’ worth.

It’s happened to anyone who works on a computer. Re-creating lost work takes less time than generating it from scratch, but it still sucks. All I could do was make him a cup of coffee and sit beside him, starting this column.

There are many things I wish I’d done differently with my children. After our divorce, it became achingly clear that in choosing my ex-husband, I’d given my sons a parent who was little different than my own. With a few more years of therapy under my belt, I would have chosen differently, as I later did.

Years of trying to make a happy marriage without the essential ingredients left us empty-handed. But I’d do it again — all 15 years of futility — to have Claude, Hugo and Jules in my life.

The skills of my first three sons are an amalgam of their parents’. They draw as easily as their father, and work as hard as I do to write well. (Good writing is born more from determined tenacity than natural talent.)

The pre-verbal baby I carried around Boston turned 25 last week, on the 12th day of Christmas. I’ve always thought of him as my gift from the Magi. While I wrote on my laptop, Claude re-created his brochure with relative ease, occasionally asking me to look at his progress. He finished shortly before 1 a.m.

All parents have regrets. There is no perfect parent, and what child wants one? The first and last rule of successful parenting isn’t so much what a parent brings to the table, only that they come to the table. Not helicoptering, but simply showing up. Be present when your children need you, while also teaching them to become self-reliant.

This column was first published in the Akron Beacon Journal on January 13, 2019.

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Updates on popular columns from 2018

January 3, 2019 whoopsiepiggle2 Comments

Reader response to my columns reads like the title of a country and western song: “Special girl, dogs and old cars.” Far and away, I receive more letters about our daughter, Lyra, and issues related to her Down syndrome than on any other subject. But readers also filled my email in-box over columns about our animals and, surprising to me, my 2003 Toyota Matrix.

As 2018 winds down, here are updates on some of those columns.

Our dog Dorothy

We had not meant our house to become a cattery, but feral cats had six kittens under our porch in the summer of 2017. We found homes for three (including two adopted by our son Claude) and kept three. We already had one rickety cat, who himself had been born to a feral mother in 2001.

After a discussion last spring with our veterinarian, Dr. Julie Brown-Herold, we realized our 1-year-old German shepherd could not live in a house with cats. Dorothy, who regularly kills squirrels and chipmunks, relentlessly hunted the cats.

Finding a home for four cats is nigh impossible. Meanwhile, our small-animals menace is gentle with all humans including babies. My friend Sheri Brown, from whom I’d purchased Dorothy, re-adopted her.

The Browns (www.noblek-9.com) have 10 German shepherds on a large property near Alliance. Dorothy, who loves playing rough with the big dogs, is a happy girl. This month, she became a first-time mama and a good one, too. We watched her birth the first six of her 10 pups via FaceTime and visited them when they were 14 days old.

Some people believe it hard, even wrong, to resettle a pet in another home, because the animal would be bereft without its current owner. In my experience, this is not the case. Rescue animals, not all of whom are victims of abuse or neglect, regularly settle in to new homes where they are much beloved.

As with children, it is important to ask what is best for each individual, assessing the situation honestly and with as little ego as possible. Sometimes major changes, no matter how difficult, are exactly what is needed.

When Lyra runs

Running, without thought of destination or concern for safety, is a common and terrifying behavior in people with Down syndrome and autism spectrum disorder. I learned this soon after Lyra was born, but she never ran off. That is, until this summer when she did so three times in one week.

I received many letters, mainly from parents whose own children have run. They were grateful to see the behavior highlighted in the Akron Beacon Journal, educating the public about running and its prevalence with these diagnoses. Often, parents of children who run feel judged because most people do not understand how our kids can vanish in the blink of an eye.

One long email response came from a mother who ultimately placed her 17-year-old daughter in a residential facility. Beautifully written, I had tears in my eyes when I finished reading her story. This mom has since begun blogging and wrote a piece about her daughter’s running, which I recommend reading. (https://frommyperspective.blog/2018/11/14/about-runners-it-is-a-real-problem/)

As for Lyra, we now use AngelSense GPS. Lyra’s adopted grandpas, Bruce Stebner and Jim Mismas, paid for the device, which is little bigger than a Matchbox car. We attached it to a belt that Lyra, so far, enjoys wearing.

The more she wears it when home, the more information the GPS gathers. If Lyra strays from our yard — or even to the back end of our yard where we seldom go — Max, Jules and I receive a text notification from AngelSense. We can open the app on our phones and it will show us where Lyra is.

One woman wrote to tell me she installed deadbolts requiring a key to lock and unlock not only on the outside of the door, but on the inside, too. We now have the same type of deadbolt on our front door because Lyra was able to turn the interior knob of the original deadbolt. Our fear was even with the AngelSense, if Lyra were to walk out the front door, she could get to our busy street in the short time it takes AngelSense to alert us and for us to look at the app.

“Keep the car!”

Next to our girl who’s safely carried us far and wide.

That was the subject line of multiple emails I received after writing about my 2003 Toyota Matrix, which has 238,000 miles and needs a new battery, alternator and at least one tire.

These letters, all written by men, were full of fun stories with old cars. One told me of his 1999 Honda Accord, which has “been to 37 states, Canada, was parked for about an hour in front of Fats Domino’s house while I was inside with The Man, and has shared all sorts of other adventures which I can’t share since the statutes of limitations haven’t expired on some of them.”

I grin every time I read that sentence and realize I am not alone in anthropomorphizing my favorite vehicle.

While I certainly do not have enough money to buy a new car, I also cannot currently afford the repairs needed for my Matrix. I have decided to wait for my tax refund in February and then make a decision. I’m leaning toward repairing my girl, unless there is more bad news when I take her in.

Thank you for reading my column and keep the letters coming. Blessings to you all for 2019.

This was first published in the Akron Beacon Journal on December 30, 2018.

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Beloved car may be nearing end

December 17, 2018 whoopsiepiggle2 Comments

According to Buddhist teachings, the root of all aggression is desire. Not being attached to a specific outcome — be it with events, people or things — reduces suffering. Buddhism also emphasizes the importance of compassion and, therefore, detachment is not the same as being emotionally null.

In 1988, I moved into a home two blocks north of Ohio State University’s campus with two roommates. Built in the 1920s, the home was simple. The few kitchen cabinets were original, the interior doors were gum wood varnished in a yellowish tint popular 100 years ago.

My roommates eventually graduated and moved away. I stayed, worked at OSU and bought the house. My then-husband moved in with me and I birthed our first two sons in my little house, which is less than half a mile from Ohio Stadium.

Hugo was born during the 1996 OSU-Michigan football game. The neighborhood, which had thrummed with activity all morning, hushed as though plunged into a soundproof room, just as I began pushing. When he was born 21 minutes after kickoff, I heard the cheers of more than 100,000 spectators, seemingly welcoming a new Buckeye to the world.

Two years later, my husband took a job in Pennsylvania and I agreed to the singularly worst financial decision of my adult life: selling the house. In my peripatetic childhood, houses were temporary, way stations for a few weeks or months. I chose my OSU house and stayed there many times longer than I had my parents’ many houses.

Before we left, I crawled through the hole in the closet ceiling of the bedroom where Claude had drawn his first breath. I walked on the rafters away from the attic entrance and, under one of the roof joists, I tucked my love letter to the house.

Throughout the 20 years since, my nighttime dreams are regularly set in that home. Again and again, I return to the first house that sheltered more than my physical body.

In 2002, I picked out my freshly minted girl, a Toyota Matrix. Hearkening the first and best movie in the Wachowski sisters’ series, I didn’t christen her anything else. The dealership had a red Matrix in stock, but red is not my color. Shipped in from a dealership in another state, my girl is light blue and has a roof rack.

The Matrix has been to northern Michigan and back more times than I can calculate. For many years, she carried us to Vermont for our Buddhist family camp where one year a local mechanic replaced her clutch.

Yes, my girl is a 5-speed. If you haven’t driven a standard transmission, you haven’t driven a car. With an automatic, the car does all the thinking, the human just presses one pedal to accelerate, another to slow down. With a stick shift, car and human merge together. As responsive as a horse who knows by the slightest pressure of a human leg what her rider wants, my girl likes to go fast.

Parents are the maestros of their children’s memories. From holidays and birthdays to predictable evenings after school or summer weeks spent with grandparents. The most significant memories cannot be predicted, but reveal themselves when the children have grown.

Such was the cross-country road trip the three big boys and I took in the Matrix the summer of 2007.

We drove south from Akron, turned right in Georgia, noodled across the South and Southwest, our path zigging and zagging wherever we left I-10 to visit many treasures, both geographic and archaeological, along the way. We carried on westward until we hit the Pacific Ocean in Paso Robles.

Every bucket list should include driving along California State Route 1, a dramatic concrete ribbon fit tight against the coastline like lovers spooning in bed. We again turned right at Yosemite National Park and made our way back to Ohio. Many days the four of us spent 10 or more hours in the Matrix. Today the boys describe the trip as seminal to their childhoods.

When I was pregnant with Leif, Max bought a minivan and the Matrix became the kid car. Claude drove it his last two years of high school. Hugo did the same.

Claude took the Matrix to Ann Arbor his final semester of college. Six months later, Hugo worked at Tanglewood Music Center in Massachusetts and the Matrix went with him.

Though her motor is still incredibly responsive, the Matrix has aged into a jalopy. The driver’s side window remains permanently closed with duct tape sealing the edges. An inch above the dashboard, a crack runs the entire length of the windshield. The reflection in the right-side mirror, an off-market replacement, wobbles like a fun-house mirror. I stopped replacing hubcaps long ago.

Seemingly out of politeness, the Matrix avoids more than one major expense a year. I have justified a big repair here, tires there, because it’s still cheaper than a car payment and she has continued to be reliable.

Two years ago this month, the clutch went out and came in at just under $1,000. A week later, Claude took Hugo back to school in Rochester and the Matrix broke down in Buffalo. This time it was the transmission.

Because my first ABJ column had not yet run, I know Jim & Sons Transmission treats all customers like family. They drove a tow truck to Buffalo and brought our Matrix back. I bit the bullet and replaced the transmission, but swore it was the last big fix for my girl.

And here we are. She now needs a new battery and alternator, about $600.

Another Buddhist lesson is that sometimes the best thing to do is nothing. I must decide if it’s time to shoot our valiant horse or spend the money so Jules, too, can have his turn with the best little car in Akron. And while I do, she rests peacefully in our driveway.

This column was first published in the Akron Beacon Journal on December 16, 2018.

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Curiosity, essential to learning, is threatened by social media

December 3, 2018 whoopsiepiggleLeave a comment

The Tuesday before Thanksgiving, Claude picked up Hugo in Rochester and together they drove through Canada to their grandparents’ home in Northern Michigan. On their way, they listened to 1984. Hugo is taking a class on George Orwell, and Claude is reading along.

The rest of us also arrived on Tuesday, but much later, having headed out on the 450-mile trip after school let out. And then, like many families, we cooked, ate and did dishes. And repeat. But in other ways, we strayed from the presumed Thanksgiving conventions (as probably every family does).

Wednesday morning, the boys helped bury a body at the city cemetery. As soon as each of them was big enough to hold a shovel, they have helped their grandpa, the city sexton, in the graveyard. It’s there that they’ve come to know their grandpa, and they all enjoy the time together.

Other than the Macy’s Parade, the television stays tuned to Turner Classic Movies. It’s like another welcome guest for the long weekend. The movies on TCM provide crack-sharp dialogue, grand song-and-dance sequences from the Depression era and visually saturated Technicolor musicals from the postwar decades. Who can resist?

Each day, Hugo and I walked the dogs along Lake Michigan. With summer tourists long gone, Petoskey stones, which are unique to Northern Michigan, are as easy to find as fleas on a squirrel. Walking on water-smoothed stones, their colors vibrant when wet, my boy and I chatted. Loud waves crashed on the shore and periodically large ones chased us back, flooding a spot where we were just standing.

We always bring board games, but inevitably play euchre every night. Our games are loud, with players swearing and laughing. Grandma is a euchre shark and will not hesitate to take someone’s seat without invitation. As she’s not one to relax, we love it when she joins us.

I enjoy my young adult children. We share many interests and regularly talk about politics, art, music, literature, science and more. Their knowledge of an array of topics is both broad and deep and I learn many things from my sons.

I assumed most families with young adult children were similar to ours. Then I began teaching college freshmen. Oh, I’ve taught them before, but not since I was in graduate school, and the world is a different place than it was a decade ago.

Adults have always complained about younger generations. Socrates, who lived in the 5th century B.C.E., said, “The children now love luxury; they have bad manners, contempt for authority; they show disrespect for elders and love chatter in place of exercise. Children are now tyrants, not the servants of their households.”

But I love working with 15- to 25-year-olds. Their frontal lobes are connecting to the rest of their brains and the ability for complex thinking explodes. Think of the stereotype of college students sitting around saying things like, “Dude, if the universe is expanding, where is it expanding to? Whoa!”

Back when music was distributed on albums, and later CDs, most purchases were made by 16- to 26-year-olds. This age group has always been a sponge not just for information, but also art, ideas and complex concepts. It’s no coincidence most undergraduate college students are 18 to 22 years old.

The household I grew up in did not expose me to culture, literature, philosophy or art. Though we regularly stayed with family in Chicago, the only museums I visited were on school field trips.

But I was curious and by high school, I was reading voraciously, not just contemporary fiction, but also classics. I also watched movies, again, both new releases and classics. I remember crying inconsolably at 17 after watching Barbara Stanwyck in “Stella Dallas.”

My point is, even without parents presenting the lusciousness of reading good books, watching good movies, studying both history and current events, curious teens can, and often do, find these treasures on their own. Or at least they did.

My classes are filled with bright students. However, when I ask them if they’ve read relatively well-known young adult books, most say no. When I ask if they’ve watched relatively recent movies, most say no. And then there’s music.

In The Glass Castle, we read about a segregated swimming pool. I recounted the story of management at a Las Vegas casino ordering a pool be drained of its water after a black entertainer swam in it. I mistakenly thought the swimmer was Nat King Cole (it was Sammy Davis Jr.) and asked my 40 students if they know who he was.

Not a one. “OK,” I said, “what about his daughter, Natalie Cole?” Nope, even though she died just three years ago, none of my students knew either of the famous Coles.

I now play music as my students enter the classroom. We’ve listened to many jazz icons — Getz, Davis, Fitzgerald and, of course, Nat King Cole. “Shall we start with a little music?” I ask when I enter the classroom and, to my heart’s delight, my students say yes.

For extra credit, I bring in my New York Times Sunday paper, back copies of the New Yorker, the Smithsonian, the Atlantic and more. For five points, they read an article and write a couple of paragraphs describing the content and analyzing the writing. Several have told me it’s the first time they’ve read a newspaper.

My students are eager to learn; few seem to glaze over when we discuss an array of subjects from politics to graphic novels. So why haven’t they found their way to the brain banquet of arts, history and culture? To answer this, I gave a brief lecture on Karl Marx.

“Opiate of the masses” is how Marx described religion. Were he alive today, he may still hold to his definition, but more than religion, I also think he’d zero in on the tamping down of curiosity caused by smartphones combined with social media. We’re all susceptible to these time vampires, myself included.

When they were in high school, two of my sons switched their smartphones back to basic cellphones because it was affecting their ability to do other things — including homework. I have at least one student in my classes whose deep addiction to his phone parallels the symptoms of drug addiction.

I wish I had a global solution for this very real problem. What I do have is advice for parents: Limit the time your children spend with screens. Do not give them smartphones when they are teenagers. No matter what their peers think, a child without a smartphone is not missing out on anything, but gaining everything.

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LIFE Project teaches parents how to advocate for kids’ educational needs

November 24, 2018 whoopsiepiggle1 Comment

By the time he’d finished the third grade, my eldest son, Claude, had attended a public school, a parochial school, a Quaker school, a Waldorf school and a Montessori school.

The following year, when he was in the fourth grade, he attended the Lawrence School, a private school in Broadview Heights that specializes in remediating learning disabilities.

Of all those schools, Claude only switched once because of a long-distance move — from Centre County, Pa., to Cleveland. Why so many schools? Because I was desperate.

As a little guy, Claude was obviously bright. He had a vivid imagination, creating a flower kingdom with his toddler brother, Hugo, under the thicket of forsythia that grew in our backyard in Pennsylvania. He often wore a handmade, felt Batman mask in public and when asked his name, he’d reply, “I’m Claude, the masked-rider boy.”

When interested in something, Claude went deep. Around age 5, he was our resident expert on beavers and their muddy constructs.

However, after his first three years of school, he remained unable to distinguish numbers from letters.

I first became concerned when Claude was in kindergarten. Though it was a wonderful school with two teachers in each class and plenty of play time, Claude soon became anxious about attending. I eventually learned, as is common, he was aware other students were easily understanding the academic lessons, while he was not.

And so began my questioning. Teachers at all his schools told me not to worry. “Boys mature more slowly,” they’d say. But I knew something was wrong. I grew obsessively concerned as more time passed, routinely reminding myself to focus on my other two little boys, too.

Then, in the summer Claude was a rising third-grader, one short conversation changed everything.

While at the Buddhist family camp in Vermont that we went to every year, a woman who’d also been attending for a few years mentioned she was a pediatric occupational therapist. I told her Claude held his pencils like violin bows. She asked me several questions and then declared, “You need to have him evaluated for learning disabilities.”

Such a simple thing, really, and one every educator I’d questioned should have offered to do. Why didn’t they? I believe because Claude wasn’t a behavior problem, the public schools prioritized their more difficult students over him. Private schools often do not have access to the substantive interventions found in public schools, and having him diagnosed might have resulted in his withdrawal from those schools.

That fall, Claude’s evaluation revealed he is severely dyslexic.

Firstborns bear the burden of rookie parents. Even though I was college-educated and very invested in my children’s educations, I did not know Evaluation Team Reports (ETRs, then called Multi-Factored Evaluations, or MFEs) existed, much less that I had the right to request one.

Nor did I know there are attorneys who specialize in education law and help families receive the services their children need. Though, even if I had, I likely would not have pursued retaining a lawyer because of the expense.

This is why I am truly thrilled about the LIFE (Learning Is For Everyone) Project, a pilot program launched by Community Legal Aid in Akron. In workshops held across the city, parents can learn what educational services are available and how to ask for them.

The materials Community Legal Aid created for this program are invaluable. A workbook with 11 pages of questions and information helps determine what problems a child is having in school.

Depending on the results of the first workbook, there is a workbook for an ETR, which is the first step in establishing an Individualized Education Plan (IEP) for a student. There is also a workbook for 504 plans, which are for students who do not meet the qualifications of an IEP, but who still need accommodations and supports to succeed.

Also included in the packet of materials is a glossary of terms and definitions. Educational jargon and acronyms are intimidating. As the current principal of Firestone High School knows, until very recently, I was unable to remember 504 plans, sometimes referring to them as “524s” or “those 500-things.”

Finally, to empower parents to advocate for their children, there is a template containing sample letters, general forms, as well as a copy of each of the four different types of intervention plans. Also found in this section is a seven-page list of community resources for concerns ranging from addiction to school transportation.

Parents who attend the workshops are walked through the first workbook, identifying their children’s needs. Then, either in small groups or one-on-one, staff from Community Legal Aid discuss with parents how to initiate and proceed with requesting interventions from the schools for their children.

To be clear, Community Legal Aid finds Akron Public Schools very responsive to the children in the district who need additional support. This has also been my personal experience. But there are children, like my Claude, who can fall through the cracks simply because their parents cannot ask for things they don’t know exist.

At this time, Community Legal Aid intends to hold a few workshops each grading period in different parts of the city. If successful, the program could be expanded to the other large school districts Community Legal Aid serves in its eight-county region, including Canton, Warren and Youngstown.

Once properly diagnosed, Claude began appropriate interventions. By the end of the third grade, he was reading chapter books. He went on to get a degree in English literature from the University of Michigan and writes for The Devil Strip, an Akron arts and culture publication.

Claude has done well, but I’ll always wish he’d been properly diagnosed in kindergarten, which is why I also wish the LIFE Project had existed 20 years ago.

LIFE Workshops

Community Legal Aid LIFE (Learning Is For Everyone) workshops will be offered Nov. 27 at the REACH Opportunity Center, 390 W. Crosier St., Akron; and Dec. 13 at Findley Community Learning Center, 65 W. Tallmadge Ave., Akron.

Workshops take place from 6 to 8 p.m. and include refreshments and children’s activities. The free workshops cover support available to students from kindergarten through 12th grade. To register, go to www.communitylegalaid.org/events or text SCHOOL to 77453.

This was first published in the Akron Beacon Journal on November 19, 2018.

Civil Rights · Uncategorized

Raising a family of voters

November 1, 2018August 7, 2022 whoopsiepiggle2 Comments

Put me in charge of everything and I’d immediately mandate compulsory voting. In the 26 countries with compulsory voting, not only is turnout high (even when enforcement is weak), but a wider demographic of the electorate is politically informed.

For better or worse, I am not in charge of everything. I am, however, in charge of my children’s upbringing. While there are many dedicated nonprofits working tirelessly to register and turn out eligible young voters, nothing has more power than what is modeled at home.

My own parents voted regularly — my mother and her husband casting votes to the right of the John Birch Society while my father, at least once, voted for Comrade Gus Hall for president. My stepmom remains politically active and is currently precinct captain for the Democrats in her county.

When my boys were little, I took them with me to my polling station so they could see voting in action and become familiarized with how it works. But I didn’t stop there.

In 2003, when we moved to Akron, I packed up the boys, then ages 9, 6 and 3, and drove to Columbus. We met with our then-state senator, Kimberly Zurz. We also met with the legislative aide of our congresswoman, Barbara Sykes.

Intimate with the positions of their bosses, legislative aides allow politicians to be responsive to their constituents in a way no single person could do. Never refer to them as “just legislative aides” because the work of these public servants is invaluable to good governance.

In the fall of 2004, the boys and I spent several Saturdays in multiple Akron neighborhoods dropping leaflets for the Democrats. We also housed volunteers who came to Ohio from other states, including Oliver Moles, a man in his 70s from D.C. Moles grew up on Rhodes Avenue in Akron and for weeks the boys listened to dinner conversations either about politics or midcentury Akron.

In 2008, Akron Public Schools were closed, as is often the case, on the day of the November election. At the time, 11-year-old Hugo was the only one of my children who had the day off. Claude was at Akron Early College High School, which follows the University of Akron’s schedule, and Jules was at a private school. I worked in Youngstown.

Home alone, what did Hugo do? He walked to the nearby Obama campaign headquarters and asked if he could volunteer. They gave him a stack of posters to roll up. When Hugo told me what he had done, I could not have been more proud.

When they were in high school, the boys helped me canvas, seeking out registered voters at their homes to get out the vote. First-time canvassers are understandably nervous about knocking on strangers’ doors.

The day of the 2012 presidential election, 17-year-old Hugo went with me for a few blocks before I gave him his own list. With 3-month-old Lyra strapped to my chest in a baby carrier, doors opened easily for me. “Get in here with that baby!” more than one woman told me.

But a young man all alone? Hugo was sure he’d be met with suspicion, but when we reconvened, he was bouncing on his toes with delight. He’d had several engaging conversations and felt he’d made a difference.

When my children turned 18, I make a big deal about voter registration. With Claude and Hugo, who have winter birthdays, I pulled them out of school to visit the Summit County Board of Elections. Once registered, we went out for lunch before returning to school.

The first year Claude attended the University of Michigan, he mailed in an absentee ballot. Then in 2015, Ohio Secretary of State John Husted threw out absentee ballots that were not postmarked, even though the U.S. Postal Service cannot guarantee all mail will receive a postmark. Almost 900 mail-in ballots in Summit County were thrown out in that year’s November election.

Not only do I want every adult citizen to vote, but I also expect their legally cast votes to be counted. Since the presidential election in 2000, voter suppression, which had lain mostly dormant since the Civil Rights Movement’s successes in the 1960s, has raised its reinvigorated head across the country.

Waiting for our ballots at the Summit Co. Board of Elections

Jules turned 18 last June and rather than make a fuss over his registration, his brothers and I waited until his first election. After a delayed bus trip from Rochester and an Uber ride from Cleveland, Hugo arrived in Akron at 2 a.m. on the second Friday of early voting. Claude, who has been a weekend canvassing captain this fall, took the afternoon off from work. At home, the four of us again reviewed the ballot issues before driving to the board of elections.

“You didn’t ask us if we would come home to vote, you ordered us to,” laughed Hugo when I told them I’d let my college students know about our family voting early and in person for several years now.

Hugo’s correct; after Husted purged so many absentee ballots, I did tell them we could not trust the system unless we showed up in person. I told them to come home from college to vote. But I also didn’t “ask” Hugo to power wash the garage, help Leif put up Halloween decorations and polish a pair of my boots while he was home. And from that list of things I told him to do, he did zero.

But Hugo went out of his way to vote in person. For my kids, it’s second nature, and I don’t doubt they will be active citizens their entire lives.

It’s never too late to start participating in our democracy. If you’ve never voted, I encourage you to register and to support measures that make voting easier, not harder. The Summit County Board of Elections is open daily for early voting, including from 1 to 5 p.m. Sunday and 8 a.m. to 2 p.m. Monday. Go vote!

Christensen Early Voter Brigade Oct. 19, 2018

This was first published in the Akron Beacon Journal on Sunday, November 4, 2018.

Civil Rights · Lyra's Latests

A few words about Down syndrome

October 22, 2018August 7, 2022 whoopsiepiggleLeave a comment

With our daughter Lyra’s birth, we learned, among many things, the importance of language when discussing her diagnosis.

In my lifetime, using the word “retarded” to describe a person with Down syndrome has become entirely unacceptable. I understood this perhaps as early as the 1970s. However, I still used the word to describe nonhuman things that might frustrate me from computers to proposed legislation.

I had to work at it, but I have completely scrubbed the r-word out of my vocabulary. Why? Because it has become a put-down in all contexts with the original referent being people with Down syndrome. Though the word was never ideal, it was once commonly used, including by the very organizations that support people with DS.

The Arc is one of the oldest of these organizations. Until 1992 it was known as “ARC,” an acronym for “Association for Retarded Citizens.” Their website includes a thoughtful explanation of why the name was changed, and that today the only r-word to use when referring to people with intellectual disabilities is “Respect.”

Here in Ohio, each county had a “mental retardation and developmental disability” (MRDD) board until 2009 when they were all retitled “developmental disability” (DD) boards.

When Lyra was 2 years old, I reread an essay I had written soon after her birth. While waiting several days for Lyra’s chromosomes to be analyzed, I wanted her diagnosis to be mosaic Down syndrome, in which not all cells have a third 21st chromosome. Why? Because in those first days after an unexpected diagnosis, I hoped for Lyra to have “milder symptoms,” as though Down syndrome were an illness.

“Milder symptoms” is a legacy of the terms “mildly retarded” or “severely retarded.” Even today, books and articles concerning pregnancy and childbirth still sometimes use the language of illness, such as this example from a parenting website: “While everyone wishes for a healthy baby, you may have one with Down syndrome.” (Disability rights activists petitioned the publication and the language was eventually changed.)

Lyra, thankfully, is a robustly healthy child. While some children with Down syndrome have other health issues, to confuse a diagnosis of DS with poor health is as incorrect as confusing deafness or blindness as poor health.

Also important to all people living with any diagnosis is people-first language. Lyra is not a Down syndrome girl, she’s a 6-year-old girl, a kindergartner, a sister to her four brothers, and a lover of music, books, playgrounds and cats. The British cartoon “Peppa Pig” is Lyra’s favorite show, from which she’s learned to pronounce several words in the Queen’s English including “luh-vley” for “lovely.”

And Lyra has Down syndrome. She’s not a Down’s kid, she’s a kid. Just as any person with any diagnosis is a person, not a diagnosis.

Yet the first months of Lyra’s life, I stopped myself multiple times as the words “Down syndrome child” slipped past my lips. People-first language is so easy to understand. However, it took time for me to consistently apply a simple turn of a phrase that identified my daughter as a person, not as her diagnosis.

“They are all so sweet, people with Down syndrome.” I’ve heard this many times, particularly in the months after Lyra’s birth. While it is statistically true that higher percentages of people with Down syndrome claim being happy with their lives than the typical population, calling them “all so sweet” is a stereotype that denies the full range of human emotions in someone with DS.

And what can happen when someone does not behave in accordance with the stereotype ascribed by society? In January 2013, Ethan Saylor, 26, was killed when he did not behave like a sweet man with Down syndrome.

While his caretaker had stepped out to retrieve her car, Saylor, an ardent fan of law enforcement and the military, slipped back into the movie theater where he’d just seen “Zero Dark Thirty.” Because he’d not bought a second ticket, the theater manager alerted security officers, all off-duty sheriff’s deputies. Saylor’s caretaker returned just as the deputies arrived and warned them not to touch him because it would cause him to “freak out.”

Rather than listen to the person who knew him, the deputies dragged Saylor down to the side of the movie screen, just out of the sight of the audience. Because of his failure to buy a $12 ticket, Saylor was wrestled to the ground, his larynx was fractured and he died of asphyxiation. Rather than watching the movie, the audience listened to Saylor cry for his mommy in his last moments of life.

Until I was 46, I gave the disability rights movement little thought. Since Lyra’s birth, however, I think every day about the need for acceptance and inclusion of all people with disabilities in all facets of life. This includes medical care, education, employment, housing and relationships. It also includes freedom from harassment both in public and at home.

Acceptance is born from understanding and understanding is best gained by exposure. That is why October is National Down Syndrome Awareness Month — to introduce our communities to our loved ones with DS, who are often their own best advocates, and to dispel misinformation about what a DS diagnosis means.

Words matter. Choose yours with empathy. And when someone uses outmoded or inappropriate language, consider their intent. If someone is using the only language they’ve known to discuss Down syndrome, but they are doing so kindly, I welcome it as a teachable moment. For I, too, have had a long history of needing important matters, including the language of disability, pointed out to me.

This was first published in the Akron Beacon Journal on October 21, 2018.

Civil Rights · Uncategorized

Those who sexually assault women do not consider them fully human

October 7, 2018August 7, 2022 whoopsiepiggle2 Comments

Earlier this semester, students in my English composition classes at the University of Akron read Jonathan Swift’s “A Modest Proposal.”Written in 1729, Swift’s satirical solution to rampant poverty in Ireland was for English overlords to buy and eat 1-year-old Irish babies.

Swift compares the Irish to livestock, which is to say, less than human. My students and I discussed other groups of people who’ve been considered less than human, and to what end. Africans in order to justify slavery. Jews, Roma, Scinti, homosexuals and the intellectually disabled in order to justify genocide. Latino immigrants to justify tearing children away from their parents.

Then there are women. In a recent column, Nicholas Kristof wrote, “In surveys, when men are asked whether they have ever had sex with a woman or girl without her consent, a surprising number cheerfully say they have, without considering themselves rapists. They simply perceive themselves as fun-loving guys in a hunting game in which a ‘no’ can be vitiated with alcohol and muscular assertiveness; they leave smirking and the women leave traumatized.”

Politics aside, the twists and turns in the current Supreme Court confirmation saga are generating important conversations. My son Hugo called me from school the day after the hearings of Christine Blasey Ford and Brett Kavanaugh to discuss what happened. Friends with daughters are sitting them down to talk about sexual assault, underscoring that should they, God forbid, ever be assaulted, to please tell their parents immediately.

I was 25 when the Senate Judiciary Committee held hearings regarding Anita Hill’s allegations of workplace sexual harassment by her boss, Clarence Thomas. In a nationally televised, live broadcast, I saw a courageous young woman harassed yet again. I quickly realized the men I once viewed as elder statesmen were little different than schoolyard bullies.

The Kavanaugh proceedings were reminiscent of those from 1991. Like other women my age and older, I wonder what, if any, progress has been made in the ensuing 27 years.

The same year Dr. Blasey alleges Judge Kavanaugh sexually assaulted her, I was invited to a party at the summer house of a wealthy young man in northern Michigan. His father owned, among many businesses, a ship that served dinner each night on Lake Michigan. Many of the ship’s waiters were college mates of the son, and their home was, for a few months, a de facto frat house.

Shortly after I arrived, a group of men passed me, two of them holding a semi-conscious woman upright as they dragged her to another room. She wore a sweatshirt, but no pants. Using permanent marker, her rapists, for that’s what they were, had graffitied her legs with words like “slut” and “whore” and images of male genitalia. I knew the woman. We were both rising seniors in the same high school.

I wish I could write I stopped the men and found a way to take my classmate home. But in my ignorance, formed by societal norms and reinforced throughout my childhood, I wondered why she let those guys do that to her. I left as soon as I could and never returned.

This past summer at the University of Rochester, where Hugo is a senior, all seven fraternity houses were vandalized. Two female students spray-painted the words “I Was Raped Here” on the front of each house. The women had been raped at two of the houses and they knew, firsthand, women who were sexually assaulted in each of the others.

Earlier this year, I listened to an episode of the podcast “Hidden Brain.” Titled “Why Now,” the piece asks why the #MeToo movement exploded last year, bringing down several powerful men, many of whom had been accused of sexual assault for years, even decades.

The podcast describes how “preference falsification” can explain why women often choose not to report. It’s because they’ve witnessed what happens to women who have. At best, they are ignored, their allegations dismissed. At worst, as alleged of Harvey Weinstein, powerful men can destroy their victims’ careers, devastating lives they’ve already traumatized.

Women weigh the benefit versus the cost of coming forward with allegations of sexual assault. Both Anita Hill and Christine Blasey Ford recounted anguishing at length with their decisions. All too often, women accurately determine the costs outweigh the benefits, leaving perpetrators free to assault again.

But in the era of #MeToo, the preference falsification has begun to reverse. “The social proof has changed,” says the host of “Hidden Brain.” Society, for this moment, has switched the burden of proof from the victim to the accused. The current Supreme Court confirmation process seems a test of whether this reversal will continue.

As with all difficult issues, the two most powerful tools of parents are modeling and talking. Ideally, all children would grow up in families where both parents respect one another. For children who do not, the examples of other families — those of their friends, relatives, and even acquaintances — can provide a vital counterpoint.

But even when parents do respect one another, it is still important they talk to their children, to cultivate relationships where children are comfortable bringing home difficult questions and discussions.

Tell your underage daughters and sons to avoid parties with alcohol, and to be hyper-cautious when attending them after turning 21.

Tell your sons no means no, even when first told yes.

Tell your daughters it is never OK — no matter what she wears, how much she drinks or any other variable — for a man to touch her body without her explicit consent. Neither is it OK for anyone to discuss sexual matters, either in earnest or jest, without her explicit consent.

“Boys will be boys” and “It’s just locker-room talk” are code phrases that trivialize and dehumanize women in order to justify sexual assault. Feminism is the radical notion that women are fully human. It seems obvious, but the endless stories of sexual assault indicate we have a long way to go before the full humanity of women is accepted as a universal truth.

This was first published in the Akron Beacon Journal on Sunday, October 7, 2018.

Uncategorized

Capstone trip with young adult children marks new relationship

October 3, 2018 whoopsiepiggle1 Comment

A Viking inheritance as sure as my blue eyes, wanderlust courses through my veins. I’ve purchased less expensive houses and driven old cars to have more money for travel. Any dog I adopt and any child I birth quickly learns to enjoy road-tripping.

When he was 6 months old, I conked Hugo’s head on the stone ceiling of an underground cavern in Tennessee. Bending over to step through a narrow passageway, I forgot the head of my baby, who was strapped onto my back, stuck out further than my body. He was fine and, along with 3-year-old Claude, I spent several days hiking in the Great Smoky Mountains with Hugo on my back.

The notion of a capstone trip was born in 2007 at the Grand Canyon North Rim. Like me, 10-year-old Hugo wanted to return, stay in one of the park’s cabins and hike the Kaibab Trail to the canyon’s bottom.

“How about the summer after you graduate from high school, we come back, just you and me?” I asked Hugo.

Hugo is now a senior in college and we’ve yet to return to the Grand Canyon. Like his brother before him, after graduation, Hugo worked full time to help pay for college.

Instead, and perhaps better, I’ve traveled alone with each of my two eldest sons after they studied abroad. Four years ago, Claude went to Granada, Spain. When his program finished, we met up at the Madrid Airport and spent two weeks falling in love with the people, food and multiple cultures across the Iberian Peninsula.

This past summer, Hugo studied in Graz, Austria. A fine program with top-notch teachers, many of whom perform in Europe’s big opera houses, it is also private. That meant Hugo could not expect study abroad grants or loans from his college.

Instead, he gave recitals, received a scholarship from the Friends of Eastman Opera and simply worked, both during school years and summers.

Nearly two years after he auditioned and was accepted, Hugo made his final payment.

Meanwhile, I, too, squirreled away money, figuring I needed $2,000 plus the price of my airline ticket. When I returned to the States, my credit card dedicated to the trip had a balance of $2,100.

Like Claude four years earlier, Hugo met me at the airport. The next day, we traveled by bus from Vienna to Prague and two days later to Berlin. Three days before leaving Europe, we flew back to Vienna.

We always travel on the cheap in part because it’s what we can afford, but also what I prefer. If you stay at Hilton hotels in other countries, your experience will be different than if you stay with locals. In Spain, Claude and I averaged about $50 a night at modest local hotels.

In the time since my trip with Claude, a new kid has arrived on the accommodations block: Airbnb. Average cost: $30 per night. Heaven for Holly is staying in the homes of locals and learning about their lives. Our last host, a delightful 24-year-old named Heribert, studies art history. His large apartment in Vienna is about $1,300 a month and as an Austrian citizen not only is his tuition free, but he also receives a stipend for living expenses.

For my children and me, the unexpected is where adventure awaits. That’s why we travel on our own and not in organized tour groups. Mishaps are inevitable. And in the response to both delightful and stressful situations lies a traveler’s character.

Hugo always loved maps. Our time at the Grand Canyon was part of a cross-country road trip in our 5-speed Toyota Matrix. In 2007, GPS systems were around, but not ubiquitous. We used a road atlas and, as I was the only driver, Hugo was my navigator.

In Europe, Hugo took navigating to the next level. In each city, he figured out public transit and Google-mapped walking directions. He also found and booked our Airbnb reservations and travel tickets to each city.

On our last day in Vienna, we left with enough time to have lunch at the airport before boarding. Twenty minutes into the ride, we realized we’d taken the right train, but in the wrong direction. We got off in a sleepy alpine village and waited half an hour for a train heading toward the airport.

Hugo repeatedly apologized, telling me how stupid he felt. Going the wrong direction on a train, particularly in a foreign country, is not only an easy mistake to make, everyone has done it (if someone says otherwise, they’re lying).

“So long as we catch our flight, it’s all good,” I told him. “But if we miss our flight, we’ll just book a new one, possibly without having to pay more.”

We caught our flight but not lunch. Hunger makes the best sauce, and hours later at Heathrow Airport, we made quick work of two large plates of fish and chips.

Traveling far from home with each of my young adult children crystallizes two decades of work. Yes, work, along with love, humor and the growth of both child and parent. Together every minute, seeing amazing things for the first time while also figuring out unfamiliar languages and ways of living (a toilet paper dispenser in a bathroom stall in Prague left me feeling more ignorant than any human ever has), a person who started as a collection of cells in my uterus becomes mostly my equal.

Perhaps because I trained them to travel like me — have a plan, but keep it loose in order to take advantage of unexpected delights — some of the best days of my life have been trekking in foreign places with my adult sons. That they, too, treasure this time together is more dear to me than any gift.

First published in the Akron Beacon Journal on Sunday, September 23, 2018.

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Runners: A terrifying behavior in certain children, including one of my own

September 23, 2018September 23, 2018 whoopsiepiggle1 Comment

“One of the first questions I ask parents who come to my office is, ‘Do you have a flopper or a runner?’ ” The audience laughed knowingly.

We were listening to a talk given by a doctor of behavioral medicine at the first National Down Syndrome Congress convention Max and I have attended. Lyra was only 10 months old at the time, but already we’d heard stories about floppers and runners.

Children with Down syndrome can, and frequently will, use their low muscle tone to transform themselves into immovable objects — “floppers.”

By the time she was 2 years old, if Lyra didn’t want to do something asked of her, she sometimes dropped to the floor and went completely limp.

Back then, it was easy to pick her up around the waist and cart her off like an oversized football. But last month at her 6-year physical, Lyra weighed 40 pounds. I now wait for Lyra the Temporary Statue to reanimate, ignoring her when possible.

Except in places like parking lots, flopping comes with few risks to a child’s health or well-being. Running, on the other hand, is almost always extremely dangerous and, therefore, deeply terrifying.

“Some children and youth with autism spectrum disorder (ASD) or intellectual disability (ID), have challenges understanding safety issues and communicating with others … a child might run off from home to play in the pond down the street — and be unable to respond to his name or say where he lives. This can happen quickly, even under constant supervision,” according to the Centers for Disease Control and Prevention’s website.

Running is not free-range parenting. Soon after Claude was 11 and Hugo was 8, they were allowed to ride their bikes far from our house, including downtown Akron. But they understood how the world works. The only problem they encountered was a stolen bike, which Hugo hadn’t secured. He saved for a new bike and never again forgot to take his lock.

I maintain a Facebook page, “Whoopsie Piggle,” devoted to information on Down syndrome and disability rights. As a resource for parents dealing with runners, in June I shared blogger Meriah Nichols’ updated post on solutions for this serious problem. Weeks later, we were those parents.

On the run

In mid-July, I sat on our front stoop with Leif and Lyra. We live on a busy street, but our house sits far back from the road. I went inside to refill my glass of water, gone all of 30 seconds, when I heard Leif screaming, “Lyra, no! Come back!”

I dashed to the door. Leif was running after Lyra, who was racing toward the sidewalk. I ran after them both, repeatedly yelling, “Lyra, stop!” which seemed only to increase her joy at running. Fortunately, she stayed on the sidewalk and I caught her just as she reached the light at the first intersection east of our home.

How a kid with low muscle tone can run so fast beats me but, again, it’s something families in the Down syndrome community know well. When Lyra doesn’t want to get examined in a doctor’s office, she fights like a pro. Staff at Akron Children’s Hospital called her the Incredible Hulk after a recent exam.

Also in July, Lyra first succeeded in opening the doors in our home. “Oh, no!” said Lyra’s occupational therapist when I told her. “I have parents ask me to teach their kids to open doors and I always refuse. I mean, sure, it’s great her hands are getting stronger, but you need to make sure she doesn’t escape.”

The next week, Max had a parental sixth-sense moment. “Where’s Lyra?” he asked. We searched the house, then the yard. Max got in our minivan and drove around the block while I ran to check the playground at the church across the street.

Max found Lyra on the street behind our house. People, some of whom we know, had her. Our backyard gate was open and we assume she walked over to our next-door neighbor’s yard, which extends to the street behind our houses. Lyra knows the way because it’s how we walk to the house of a friend of Leif’s.

Deputized by fear, we’ve all upped our diligence to protect Lyra. We all repeatedly make sure the gate is locked. The doors in the house are locked. And yet …

Less than a week after her dramatic disappearance, we were cooking dinner when the doorbell rang. “Probably somebody campaigning,” I said to Max as I walked to the door. I found Lyra on our stoop with two women. They had seen her trotting purposefully down West Exchange Street and went after her.

Luckily, one of the women knows me because her daughters went to Firestone with Claude and Hugo. However, she only connected that Lyra was also my child from reading my columns. Divine providence or great good luck. Either way, our debt to these women is immeasurable.

Extra precautions

“How to keep your bolting child safe is one of the biggest concerns for many parents of kids with disabilities … and I think only another parent of a child with a disability really gets it,” writes Meriah Nichols. Our children “run away without conscience, with a complete disregard for safety or caution, almost an inability to stop.”

What can we do?

We have walked our fence and blocked the places where Lyra might squeeze through the wrought-iron bars.

Last spring, we dismantled our dangerously derelict play set, which Lyra loved. With my tax refund, I bought a new, bigger play set. However, because we’re considering selling our house to reduce expenses, we delayed construction. Now it’s (mostly) built and keeping Lyra engaged. If we move, I’ll buy another one.

And we are investing in an AngelSense GPS tracker for children. Nichols calls it the gold standard of solutions for dealing with runners.

What can you do?

If you see children who seem too young to be walking alone, or possibly disabled and alone, calmly approach them. If they refuse to engage but continue on, call 911. First responders should be, and often are, trained on how to respond to children with intellectual disabilities or ASD who have run.

After Lyra’s last (and most terrifying) running episode, the police came to our house and took down her information. They did this so if, God forbid, it ever happens again, the department knows who she is and where she lives.

“It takes a village to raise a child” is a well-known African saying. This summer, Max and I felt like it has taken our village to keep our daughter safe and whole. And for this it is impossible to fully express our gratitude.

This was first published in the Akron Beacon Journal on September 9, 2018.

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Cultivating a household of readers

September 16, 2018September 21, 2018 whoopsiepiggle1 Comment

“Did you hear they’re making a TV show of Donald Duck Adventures? You know, the one we had a subscription to?” asked Hugo.

There was no subscription to Donald Duck Adventures. In 2003, I called and told the publisher I would pay for 12 issues up front if they mailed them to us when published.

My eldest son, Claude, did not read until the third grade, the year he was diagnosed with dyslexia. Though clearly intelligent, he had developed low academic self-esteem. The definition of a learning disability is when a person’s academic performance is notably lower than their IQ would indicate. Like the right combination to a vault of riches, once we had an accurate diagnosis, effective remediation could begin.My children live in a home with few screens and endless reading material. Only last year did I break down and get DirecTV after Max bought our only television, located in the finished basement.

I forbid video games in my home. Sure, my big boys played video games at their friends’ homes. My rule is not “no gaming ever,” though I counseled them to avoid violent games (they didn’t).

Instead of passively spending their days in front of screens, my children play and fill their time with books, newspapers and magazines.

At library sales, I buy children’s books like penny candy, most in new condition. Going on a road trip? Head to the library to borrow audiobooks everyone will enjoy. Some of our favorite audiobook authors are Cornelia Funke, Eva Ibbotson, Roald Dahl, Sid Fleischman and, of course, J.K. Rowling. As a family, we named our only girl Lyra after the main character in The Golden Compass (skip the movie, get the audiobook).

We subscribe to (and read) the Akron Beacon Journal, the Plain Dealer, the Sunday New York Times and the West Side Leader. When Max and I began dating I was shocked he did not have a newspaper subscription. “How do you read the comics?” I asked, a question he found odd from a 40-something woman.

Each night before dinner, someone clears the newspapers off the table before setting it. Nearby on the floor I keep three baskets: one for local papers, one for magazines and one for the New York Times. Every few weeks, I cull through them, finding stories I missed or that might interest someone else in the family. I set those pieces aside and recycle the rest.

In this era of fake news, newspaper subscriptions are more important than ever. Most fake news is generated on the internet where anyone can post anything, whereas legitimate newspapers rigorously fact-check what they put in print (see Doug Livingston’s piece from January at http://bit.ly/2uvigYD). If they get it wrong, corrections are published and if articles are found to be intentionally misleading, those involved usually lose their jobs.

We also subscribe to more magazines than we can all read. However, each magazine is read, if only in part, by at least one of us. Jules, our budding biologist, reads National Geographic, Audubon, several birding magazines and, until recently, Automobile. I receive The Sun and Creative Nonfiction. Max and Jules just switched from Cook’s Illustrated to Milk Street, a new cooking magazine. And we all read the New Yorker, Smithsonian, the Atlantic, Time, Down Syndrome World and This Old House.

Our fourth son, Leif, is now 7 and I see again how this works. He has organized dozens of dinosaur stickers on the four walls of his bedroom by the geological period in which they lived. A new book on dinosaurs guarantees a delighted “Awesome!” but Leif also loves his Junie B. Jones collection. As I type this, I hear him giggling every so often. He’s downstairs listening to the audiobook In a Glass Grimmly by Adam Gidwitz.

Then there are comics. Until last year, Leif had someone read Garfield to him every morning. Now he reads it, and other strips, to himself. Most mornings, all of us talk about which strips made us laugh and the updates in those with ongoing storylines (in recent years, Sally Forth has developed rich and relevant narratives, while Mary Worth, with a new team of artists and writers, is still like a train wreck I can’t help but glance at). Max, who once looked askance at my love of comics, now reads them while the coffee brews, before anyone else is up.

Cartoons made my kids look not only at newspapers, but also Newsweek (back in the day) and the New Yorker. The last page of the New Yorker is the first page we all read. That is where you’ll find their cartoon-captioning contest, and this page has taught me how the best cartooning is as much the caption as it is the art, for most submissions are heavy on the obvious, light on the ironic and overwritten. Hats off to the pros.

When I was a girl, Harvey, Disney and Archie comics filled rounders near the checkout lanes in grocery stores (Mad, a nonsaccharine favorite, was hidden in the magazine aisle). Like most kids, I read my comic book stash over and over. Reading anything repeatedly develops literacy skills, while the drawings help decode language without the stigma of little-kid picture books. All this makes comic books perfect for struggling readers.

In 2000, when I first purchased comics for children, I couldn’t find any that were particularly kid-friendly. At that time, superheroes all needed serious therapy to get over their dark and brooding psyches. Resorting to the internet, I found reprinted collections of Disney comics by Carl Barks, which led me to Gemstone Publishing and the “subscription” to Donald Duck Adventures. Later, the boys moved on to other comics, including classic superhero collections, and eventually graphic novels.

Today, Claude and Jules (who is also dyslexic), often sit at the table so engrossed with a book, they cannot hear me speaking. Currently, Jules is enjoying the Earth Sea series by Ursula LeGuin and Botany of Desire by Michael Pollan. Claude, who recently earned a degree in English literature and now writes for the Devil Strip, is reading Sparrow by Mary Doria Russell and A Connecticut Yankee in King Arthur’s Court by Mark Twain (again).

Meanwhile, the one who needed no help learning to read reads the least. However, Hugo just finished, and wants every American citizen to read, On Tyranny by Timothy Snyder.

And it all started with comics.

This was first published in the Akron Beacon Journal on July 28, 2017.

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Flyer for Lyra’s classmates

August 26, 2018August 26, 2018 whoopsiepiggleLeave a comment

Many families make flyers to send home with the classmates of their children with Down syndrome. I’ve seen several made by friends of ours, who helped us with ours.

Rather than wondering if Lyra has Down syndrome or why one student in the classroom receives extra assistance, a flyer gets in front of the proverbial bus. Information can dispel misunderstanding and fear and encourage acceptance.

Tomorrow is Lyra’s first day of kindergarten. She will be fully included in a general ed classroom with “push-ins” (assistants come into her classroom rather than pulling her out). There is not a single study that shows improvement for students who are in segregated classrooms based upon disability.

Furthermore, not only do typical students who grow up with a classmate with an intellectual disability become normalized to diversity, they, too, also benefit academically from inclusion.

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Mom, stepdad and kids work together to create a family

August 12, 2018 whoopsiepiggleLeave a comment

The wedding of our friends Michael and Jessica, celebrated 10 years ago this week, was an event that brought together more than just two people.

For weeks, people prepared the farmhouse of Jessica’s grandmother. In the backyard, the couple were wed by Michael’s father on a platform built by Jessica’s father, covered with an awning sewn by Michael’s mother. The flowers were a year in the making — chosen varieties grown in the gardens of several friends filled dozens of vases.

Jessica’s father gave the first toast, saying everything an adult child wants to hear from a parent. Unbelievably touching then, it became more poignant when he died less than two years later from an aggressive brain tumor.

And when the day gave way to a moonless night, everyone gathered around what looked like a derelict gazebo. Easily 12 feet tall and 5 feet wide, boards of all shapes and sizes created a pattern reminiscent of webs built by drugged spiders. Built by Jessica’s firebug uncle as his gift, he ignited the structure. The celebratory pyre was tremendous, if not a little scary.

Several hours after we’d arrived, my boys, Max and I all sang Strawberry Fields Forever as we walked under the starlit sky to our car, parked a few blocks down the street.

That magical day seemed a nod from the universe. For that’s when my boys first met Max.

Photo from the 2008 wedding: From left, Claude, Hugo, Jules and Holly Christensen, Max Thomas. (Photo courtesy Holly Christensen)

While we had long been friends, a year after I became newly single, Max and I discovered among all the things we shared in common was a budding crush. It was March when he first kissed me, kindling something I thought unavailable to 40-somethings.

Five months later, when Max accompanied us to the wedding, I told the boys he was an old friend. We left it at that during the following months even as Max came to our house for dinners and invited us all to movies.

“What would you think if I started dating?” I asked the boys over dinner one evening in October.

“Oh, no! No, no, no!” said 11-year-old Hugo.

“What if I told you I already am?”

“What? Who?” asked Hugo, bolting up from his seat at the table.

“I know,” said 8-year-old Jules with a sly smile. My quiet boy has always been a great observer (though not so good at remembering names). “The guy with the glasses.”

The next time Max came for dinner, Hugo walked up to him and said, “So, I hear you’re dating my mom. Can I have 20 bucks?” Max politely declined.

At the time, I was taking night courses for my master’s degree. Before long, Max began driving to my house after work to cook dinner and stay with the boys until I returned. The first night, I did not leave instructions with Max, for Claude was 14 and the boys knew the rules.

Silly me, they hoodwinked Max. When I walked in the door at 10 p.m., nobody was ready for bed, all the dishes were dirty and homework was still spread across the dining room table.

That was the first time Max saw me angry with my children.

In the following 10 years, those little boys grew into men and a lifelong bachelor became a seasoned father. In the process, we’ve learned how to accommodate our habits and personalities, sometimes changing along the way.

For instance, Max and I do dishes differently. Before putting anything in the sink of hot soapy water, I rinse off all the muck. Max tosses everything as is into the hot soapy water. The boys do dishes my way. Many times, too many they say, Max tosses a sauce-coated serving spoon or a greasy pan into their wash water. They howl, he apologizes but can’t seem to completely break the habit.

Living together also means polite pretense vanishes. If I am mad at someone, I say so, at times with more diplomacy than others. Oddly enough for an attorney, Max avoids conflict. For years, when something bothered him, he quietly, but obviously, fumed. It drove the boys crazy and they’d call me and say, “Mama, Max is doing that thing.”

Going from zero to five kids in four years, Max soon learned all emotions are valid, even the messy ones. He now tells the boys when he’s upset with them, keeping me happily out of the middle. I’ve had to work on that, too. Raising children with someone who isn’t their biological parent elicits in me what I think is an evolutionary response to protect those genetic packets called children.

I can complain about my children’s behavior, their attitudes and when they disappoint me. I might even yell in their faces (not often and, really, just Hugo). But when Max corrects the boys, my first impulse is to defend them, whether they merit a defense. Even now.

A family photo from 2015. Holly and Lyra Christensen, Claude Christensen, Leif Thomas, Max Thomas, Hugo Christensen, Jules Christensen. (Photo: Shane Wynn)

Sons of single mothers do not need a man in their lives to show them how to be successful adults. Women are adults who can do that. And I did. But my relationship with Max has modeled something invaluable — that a man can love and support a strong woman without needing to control her. And even the best relationships require work and compromise.

Like our friends Michael and Jessica, Max and I came together not as two individuals, but as two larger families. Because of their ages when they met him, each son has a different relationship with Max. Unlike his brothers, Jules has few memories of life before Max. All three frequently tell Max how glad they are to have him in their lives.

And it all started at a rollicking wedding at a farmhouse.

This was first published in the Akron Beacon Journal on Sunday, August 12, 2018.

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Akron Children’s Hospital: Great for everyone, invaluable for frequent flyer

August 3, 2018August 4, 2018 whoopsiepiggleLeave a comment

Ophthalmologist Dr. Richard Hertle, Lyra and dad Max Thomas before Lyra’s procedure on Thursday, July 26, 2018. (Photo: Holly Christensen)

They say it’s impossible to know how good your homeowner’s insurance really is until you file a claim.

The same can be said of your local hospital.

Until 2012, I had only a handful of experiences at Akron Children’s Hospital.

When he was in the second grade, Jules was tested and diagnosed with dyslexia at ACH. One of their orthopedists confirmed Hugo’s mild scoliosis and told him he had nothing to worry about. And ACH’s sports medicine department diagnosed Claude’s Osgood Schlatter disease, an inflammation of growth plates at the end of the tibia common in athletes who are growing rapidly.

Lyra, however, is an ACH frequent flyer. This month alone she has 11 appointments.

On her second day of life, we met for the one and only time with Dr. Catherine Ward-Melver, a kind geneticist who confirmed Lyra’s diagnosis of Down syndrome.

On her third day of life, we met Lyra’s ophthalmologist, Dr. Richard Hertle, whom we’ve seen multiple times a year ever since. He has operated on each of her eyes two times.

When she was 5 months old, Lyra was diagnosed with hypothyroidism, a condition common in people with DS. Certified nurse practitioner Stephanie Marszal in the endocrinology department is also someone we see regularly. Our visits with her are like double dipping, for Marszal worked in a pediatrician’s office before specializing in endocrinology. She provides both an update on Lyra’s thyroid and an extra wellness visit.

In the second half of her first year, Lyra began the infant block of therapies offered at ACH. Physical, speech and occupational therapies in back-to-back half-hour appointments make effective use of everyone’s time. Children from birth to 3 years old are eligible with a qualifying diagnosis.

Speech therapist Shelly Vaughn had Lyra singing Itsy-Bitsy Spider at our first visit, leaving me slack-jawed. Heather Reiss, her occupational therapist, got Lyra to work, work, work on both fine and gross motor skills all while Lyra thought she was playing. When she aged out of the infant block, I cried because I had grown so close to these ladies.

These days, Lyra has four speech therapy and two occupational therapy appointments per month. When we pull into the parking lot, Lyra chirps eagerly from her car seat, “Lisa, Miss Margaret!” Still, I sit in on enough sessions to know they make our girl work. Recently Margaret Norin, Lyra’s OT, told me, “I wish just once my clients with DS would say ‘Yes!’ the first time I ask them to do something!” Oh, yes, I could not agree more.

With Down syndrome comes a cascade of tests to rule out various issues. Annually we visit Dr. Diane Langkamp in the Down syndrome clinic to make sure we are on top of these things. (Down syndrome clinics are overwhelmingly located in the northeastern U.S. and I do not take for granted that we have one in Akron.)

Last year, an ACH otolaryngologist (ear, nose and throat doctor) ordered a sleep study for Lyra. Kids with DS have a higher rate of sleep apnea due to certain anatomical features. Any child not getting enough sleep has an increased risk of developmental delays, and children with DS need fewer, not more, developmental obstacles.

Most people with DS not only have low muscle tone, they frequently have ligament laxity. One common effect is foot pronation — ankles tilting toward one another while the toes splay outwards, fin-like — so Lyra has worn braces on her feet since she began walking.

But ligament laxity also affects the cervical spine. An injury to the atlantoaxial joint, or the first and second cervical vertebrae, can lead to paralysis or worse. So on July 20, Lyra had a spinal MRI under general anesthesia to examine the joint.

This past Thursday, Lyra also had an eye exam under anesthesia. Were she a more “compliant” patient, this would not be necessary. But Lyra fights like an oiled otter when getting examined up close and personal. Dr. Hertle needed to determine her first bifocal prescription and also test her for glaucoma. Because of her congenital cataracts and subsequent lensectomies, Lyra has a higher risk of glaucoma than the average bear.

Dr. Hertle. If I could put heart emojis in my column, they’d be here. When I learned my newborn needed eye surgery ASAP, I called a friend in a related field and asked who was the best in Ohio. Doctors hate talking about which practitioners are better, but as a friend of more than 30 years, this doc made some calls for me.

We’d be hard pressed to find a better pediatric ophthalmologist. Gentle and effective with Lyra (remember: oiled otter), when asked questions about the eye and his surgical techniques Dr. Hertle lights up like a boy getting his first puppy.

I learn other things from him too. When Lyra was 9 months old, she suddenly seemed to “awaken.” Dr. Hertle explained to me that the nerves in children with Down syndrome myelinate later than in typical kids: “See that wire down there,” he said pointing to an outlet with a thick cord plugged into it. “Because it’s insulated, electricity can travel faster. The same is true of nerves when myelination has occurred.”

I know of only two things lacking at ACH: One, the food could be better. Across the country, hospital restaurants serve food that is healthy, delicious and affordable. ACH has made some baby steps (two thumbs up for the cafe in the Kay Pavilion) but there is still ample room for improvement.

Also, all departments, including the ER and the surgery centers, should have more than popsicles and graham crackers (Goldfish, please).

The second deficit is big for us: No optometry. Because of her vision impairment, Lyra qualifies for a state insurance program called BCMH (Bureau for Children with Medical Handicaps). It helps with her visits to Dr. Hertle, but ideally we’d be able to use it for her glasses, too.

Lyra has no lenses, natural or artificial, in her eyes. Her glasses are essential and expensive. In order to use the BCMH insurance, however, our primary insurance must get billed first. The only optometrist’s office in the northern half of Ohio that takes both our primary insurance and Lyra’s BCMH is at Nationwide Children’s Hospital in Columbus.

But these concerns are no more than a couple of cirrostratus clouds in a bright blue sky. Not a week goes by that I don’t thank the universe that it takes me less than 15 minutes to get Lyra to some of the top medical professionals in the country.

Not only is it an immeasurable convenience for Summit County residents, ACH has no shortage of business, or so Lyra’s neurologist told me recently. Which means ACH provides great medical care where it is greatly needed.

I know parents of children with Down syndrome who have moved to different states for better medical care. That decision is one we will never have to make. If ACH were an insurance company, we’ve filed just about every possible claim. And since the results typically exceed our expectations, we know firsthand how good it really is.

This was first published in the Akron Beacon Journal on Sunday, July 29, 2018.

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When households merge: What to do with all that stuff?

July 25, 2018 whoopsiepiggleLeave a comment

In the 1967 film Barefoot in the Park, newlyweds played by Jane Fonda and Robert Redford move into their first apartment together. They own so little, the apartment holds their vibrant emotions more than their meager belongings.

I envy such simplicity.

When my first son was 9 months old, we moved from a house in Columbus to a shotgun apartment in Boston. In the weeks preceding our move, my ex-husband visited his brother and sister to collect his inheritance. Years earlier, the three siblings had divided up their parents’ belongings, but my ex didn’t have a place for things like 12 Queen Anne chairs, drop-leaf tables, a sideboard and two hutches.

In Boston, it was immediately evident we should have left the heirlooms with their previous caretakers.

Dividing the apartment like a river, a narrow hallway ran front to back with doors to small rooms on both sides. At its terminus, the hallway opened into the kitchen with a table and four chairs.

All other rooms, however, could’ve been mistaken for antique shops. Furniture lined every wall, often stacked two high. One room was inaccessible, warehousing all that fancy dining room furniture.

Many of the antiques had been built by my ex-husband’s great-grandfather, adding a layer of obligation to keep and preserve every single piece. In 14 years of marriage, we moved, with all that furniture, five times.

When we separated and a moving van drove away with all he owned, I felt relieved of an unwanted curatorship. Rooms where heavy furniture once towered felt vast and airy. Where I had been overwhelmed, I became calm.

The boys also liked the freed-up space and we were mindful of adding anything new. A couch and a wing-backed chair given to us by friends were all we acquired.

And then …

Gourmet kitchen

Lamb shank roasted with berries and a layered root vegetable casserole was the first meal Max cooked for me after he’d put an addition onto his house, which included a gourmet kitchen. More than the granite countertops and hickory cupboards and floors, I loved the layout of the kitchen — both open and cozy.

The rest of the house, however, was a curious blend. Max’s father had lived there for more than 20 years before he died in 1999 and much of his furniture and collectibles remained. Added to this were the contents of Max’s household, acquired during the years he lived in Philadelphia and Iowa City before returning to Ohio when his father became ill.

Books of poetry, fiction and literary criticism, from Max’s previous career as an English professor, filled shelves in several rooms. Artwork, including African masks, recalled long-ago trips taken by Max’s dad. Some things were stunning, like the table lamps with Buddhist figures for bases. Others were trinkets valued only for the connection to their previous owner.

The first years of our relationship, Max and I maintained our two homes, even after Leif was born. We started calling his home in Chagrin Falls our pied-à-terre, a village getaway from “big city life” here in Akron.

For well over a year, our friend and realtor, Barb Snyder, patiently showed us houses. With two homes already, we weren’t in a rush. Every month or two, we’d put together a list of properties we wanted to view.

Many newer homes had ideal floor plans for our large family. The houses we already owned were both early 20th century Arts and Crafts style. Old homes with doors made of solid wood, doorknobs of brass with decorative scutcheons, rooms with quirky features. We were very tempted by a home built in the ’60s with terrazzo flooring in the entryway. But the hollow-core doors and sterile bedrooms nixed it for us.

After the sellers dropped the price significantly, a home built in 1940 popped into our price range. We knew instantly. Rooms that flow with doors of solid wood and decorative trim. An acre and a half in the city with a 5-foot-tall wrought-iron fence enclosing the back yard. A month later it was ours.

Months to move

As we sold neither of our previous houses, we took several months to move. Endless moving. I opined over the couple I know who built a modern home in Peninsula and when they sold their century home in West Akron, sold nearly all their possessions in a tag sale and started afresh.

That couple has more money than we do.

The homes Max and I moved from were about 2,000 square feet each. At 3,000 square feet, the one we moved into is bigger, but still required substantial downsizing.

We had yard sales at Max’s Chagrin Falls home and at our new home. We sold stuff on Craigslist (it’s amazing what people will buy; seriously, Craigslist anything before throwing it out). And yet, we still had enough for an extra house.

So it was fortuitous when I bought the home next to my old one on land contract. We quickly filled it with our extraneous furniture. When Max opened his solo law practice, we made the ground floor of the new home his office. Our extra dining room table became his conference table.

The second and third floors became an apartment for Claude and Hugo when home from college. After he graduated in December 2016, Claude moved in permanently and began paying rent.

But wait, there’s more.

Still, sections of our garage and basement are filled with stuff we never use, will likely never need and, in some cases, cannot even say what it is. Over time, we’ve become largely blind to these piles, which include all the boxes we used when moving.

A Buddhist friend recently said managing a household like ours requires a continual balancing of order and chaos. Homes that are too tight and tidy restrict creativity, even joy. But extreme disorder makes clear thinking difficult.

And it’s not just an adult thing. Kids thrive with relaxed order. For one thing, it allows them to more easily find the toys they want. It also provides predictability and predictability fosters security.

This summer, I’m leading the charge. And I have a very willing crew. We have been in our house for seven years now. Enough time to lessen our attachment to items no longer of use. Room by room, floor by floor, things are going on Craigslist, to Goodwill and, on rare occasion, the trash. We can let go of once-precious possessions so they can bring joy to someone else.

And thereby bring us some much-needed simplicity.

This was first published in the Akron Beacon Journal on July 15, 2018.

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Fully house nearly empty…for now

July 6, 2018July 7, 2018 whoopsiepiggleLeave a comment

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

June 17, 2018June 17, 2018 whoopsiepiggleLeave a comment

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

June 4, 2018June 4, 2018 whoopsiepiggleLeave a comment

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

May 21, 2018 whoopsiepiggle1 Comment

“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

May 8, 2018May 8, 2018 whoopsiepiggleLeave a comment

“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

April 25, 2018April 26, 2018 whoopsiepiggleLeave a comment

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.

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!

April 10, 2018April 10, 2018 whoopsiepiggle1 Comment

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

March 27, 2018March 27, 2018 whoopsiepiggleLeave a comment

“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.

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.

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

March 27, 2018March 27, 2018 whoopsiepiggleLeave a comment

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 Heroes, The 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

March 7, 2018 whoopsiepiggleLeave a comment

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

February 14, 2018 whoopsiepiggleLeave a comment

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

January 28, 2018 whoopsiepiggleLeave a comment

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.”

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

January 19, 2018 whoopsiepiggleLeave a comment

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

December 29, 2017 whoopsiepiggle1 Comment

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

December 15, 2017December 17, 2017 whoopsiepiggle1 Comment

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

December 3, 2017 whoopsiepiggleLeave a comment

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

December 3, 2017December 3, 2017 whoopsiepiggleLeave a comment

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

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

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.

The cost of too much

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.

Christmas roundup

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

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.

Buy, buy, buy

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

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.

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

November 20, 2017November 20, 2017 whoopsiepiggleLeave a comment

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.

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.

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

Civil Rights · Uncategorized

Don’t Let Your Sons Grow Up to Be Predators

November 5, 2017August 7, 2022 whoopsiepiggle2 Comments

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

October 26, 2017October 26, 2017 whoopsiepiggle1 Comment

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.)

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

Lyra’s first Beggar’s Night, 2012

Leif trick-or-treating with both his pumpkin and Thomas the Tank Engine , 2012

2013, Littles in same costumes as 2012

2016, Lyra in Leif’s old chicken costume, Leif as a T-Rex yet again.

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Choosing Words to Live By

August 28, 2017August 28, 2017 whoopsiepiggleLeave a comment

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.

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

August 17, 2017August 17, 2017 whoopsiepiggle2 Comments

“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.”

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.

July 2, 2017July 2, 2017 whoopsiepiggleLeave a comment

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.

Goldie and Alex, my first pair, in 1992.

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.”

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

May 6, 2017May 6, 2017 whoopsiepiggle1 Comment

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.

Kelsi graduating from Clemson

Mikayla at Bethel

Clayton at UNLV

Luke at Saginaw Valley State University

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

April 9, 2017April 9, 2017 whoopsiepiggle1 Comment

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

March 12, 2017March 14, 2017 whoopsiepiggleLeave a comment

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.”

Perfect newborn

Jules & Lyra

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.

Lyra at one

Lyra at two

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.

Lyra at three

Lyra after playing in muddy puddles on a recent spring-like day

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?

January 26, 2017 whoopsiepiggle2 Comments

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

January 5, 2016January 5, 2016 whoopsiepiggle2 Comments

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.

__________________________________________________________

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.

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.

Like 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

December 3, 2015December 6, 2015 whoopsiepiggle1 Comment

“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, I’m 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.

While 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.

Lyra's Latests · Uncategorized

Presume Brilliance

October 29, 2015April 25, 2017 whoopsiepiggle2 Comments

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

Parents 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.

Lyra's Latests · Uncategorized

Lyra’s Meme: People-First Language

October 6, 2015 whoopsiepiggle2 Comments

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.

Lyra's Latests

A Year After a Painful Week

June 18, 2015December 10, 2015 whoopsiepiggle3 Comments

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.

I 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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