Monthly Archives: August 2013

Circling the Wagons

Have Children, Will Travel

In the patch of state fair zinnias outside our front door, I have been watching the bees hop from one bright blossom to another on these late summer evenings, the warm air drier than it was in high summer, a sure sign that autumn is collecting herself somewhere and soon to arrive in Ohio. Our family was like the bees this summer, hopping, or driving rather, from one colorful destination to another. In mid-June we went to Dayton, Ohio for my thirtieth high school reunion. Then, over the Fourth of July weekend, we drove to Northern Michigan where Jules had spent two weeks with his grandparents, having gotten there by Greyhound. A week later, I drove to Denver with Jules, Leif and Lyra. Ten days after returning from Denver, we left for Vermont and family camp at Karmê Chöling Shambhala Buddhist Meditation Center.

At the Great Smokey Mountains with Claude & Hugo, 1997. God knows what possessed me to dye my hair that one, and only, time.
At the Great Smokey Mountains with Claude & Hugo, 1997. Yes, that’s me (after my one, and only, adventure in hair color).

Busier than the past few summers, this one reminds me of all the summers before the long divorce with the older boys’ father when I frequently loaded the kids into the car and drove to far away places. Claude was three and Hugo just six months old on my first big road trip with multiple wee people. The three of us caravanned with a friend and her kids to the Great Smokey Mountains where the hiking was slow going, yet still fun, with a group of children all five and under. Hugo’s little face peered over my shoulder from the backpack I carried him in. When I bent forward to squeeze through a narrow passage in a cavern deep underground, Hugo’s poor little noggin smacked into a wall of rock. Hefty though he was, I carried Hugo in my arms for the rest of that subterranean tour.

“You must be crazy!” or “I could never do that!” people tell me now, as they have for decades, when they hear of the places I travel with small children and no other adult. I feel now, as I did then, that we were lucky. My work does not require me to be in one place. As long as I have access to a phone and Internet, I am able to manage most things from afar. But what they really mean, these astonished onlookers, is that they have no desire to travel alone with small children. If it is hard for small children to play contentedly in a house full of toys long enough for someone to make dinner, how on earth can they manage strapped into car seats for hours, sometimes days, at a time? Like anything, I respond, traveling well can be taught.

Training Up the Mama

A few months after taking them to the Smokies, I drove Claude and Hugo up to their grandma’s in Northern Michigan. Claude was three and Hugo nearly a year old—basically the same ages as Leif and Lyra are now. “The baby’s sad,” Claude repeatedly told me from his car seat in the back. So, holding the steering wheel with my left hand, I twisted my right arm upside down and stretched it into the back seat. My middle finger, nail side on his tongue, was in baby Hugo’s mouth. He would suck on it with incredible force, then intermittently breaking the suction with a loud POP of his lips before screaming. Again. And again.

I don’t think it can get any worse than this, I thought to myself. In those days, there were few exits, and even fewer with any businesses near the exits, once you crossed the Zilwaukee Bridge near Saginaw in the middle of the Michigan’s lower peninsula. I had no choice but to continue driving with my finger in the mouth of a baby behind my back whom I couldn’t even see. Taking inventory of myself, I was surprised to find I was calm.

If this is as bad as it gets, I can handle it. 

We stopped at the first gas station I could find, a Sunoco surrounded by a field of tall grass where I spread out a blanket and nursed baby Hugo. The blades, heavy with seed, nodded in the wind. Hugo nursed until he was milk drunk while Claude chased the grasshoppers that fluttered around us like miniature helicopters, their wings sounding mechanical against the steady chirping of unseen crickets.

Training Up the Little People

This summer, 19-year-old Claude and 16-year-old Hugo both have jobs and had to stay home when we drove to their grandma’s for the Fourth of July weekend. Leif and Lyra sat in their age-appropriate car seats while Jules was in the way back seat of the van as we snaked down the state of Michigan in post-holiday traffic. Rarely driving more than 15 mph, bicycling would have been faster. At thirteen and a half hours, our trip home took nearly twice as long as usual. Lyra and Leif alternately slept and played until eight hours into the trip when, just as we were gunning to get to Ann Arbor for dinner, Lyra started to cry. Not a crabby cry, but a “Why are you doing this to me? I really can’t take it anymore!” kind of cry. Unlike the boys when they were babies, Lyra doesn’t suck my finger for comfort and nothing any of us did soothed her. Like all of us, she wanted out. I wanted to weep with her. When I pulled her out of her seat in the parking lot of a Macaroni Grill, I wiped her wet face with a tissue before lifting her to my shoulder. She nuzzled the bare skin where my neck meets my shoulder. I began nursing Lyra next to the van and walked into the restaurant with her at my breast. For everyone’s sake, we had a leisurely dinner and the little kiddos slept the rest of the way home.

The drives to Denver and back were the kind I try to avoid: endurance tests. With dates to keep at both ends of the trip, there was nothing leisurely about them. On the way there, Jules was my endlessly helpful assistant. He managed the audio books, handed things to Leif and Lyra and, when necessary, sat in the very back seat so that Lyra could look at his face. This was sometimes the only thing that comforted her. For a while anyway.

Max, who flew into Denver, drove back with us. His help in all things, as well as his company, improved our return trip. But it also meant we had to keep an intense pace in order to get him back to work in Cleveland.

The twelve-hour drive to Vermont should have seemed like a short jaunt compared to Denver. But before I even began packing for Karmê Chöling, I was already looking forward to when we would get home. “I can’t wait until I don’t have to pack and plan for any more trips!” I told Max.

Stopping the Madness or Removing the Japanese Beetles from Life

Living life by getting through things is no way to live. In fact, I would say it is not even living. Being present for all of life—the ups, the downs, the routine and even the dull days—is grace and something worth striving for.

And yet of all times, I found myself working to just get through family camp at a Buddhist meditation center. Clearly, it is time for us to be home and stay there. To continue rooting in our still new-ish home, as well as this family, only created in the past few years.

Along with the helpful bees in our bed of zinnias, I noticed the arrival of Japanese beetle with their beautifully iridescent exoskeletons–coppery-colored wing sheaths and heads the green of Robin Hood’s foresty get up. Exotically gorgeous, these coleopteras embedded themselves in the large zinnia blossoms, moving slowly like indulgent guests at a spa. Often they are found coupling in their petaled beds and, rather than go elsewhere to eat, they consume the very flowers upon which they’ve mated. Before we left for family camp, we set out Japanese beetle traps. When we returned, they were satisfyingly laden with the dead bugs. Not very Buddhist of me, perhaps. But I’m willing to accept a little dead bug karma in this case.

Instead of driving back from Karmê Chöling on the interstate through New York State, we took scenic Route 20. It took us longer, yes, but it brought welcomed sanity into our hectic summer. Along the way, Max and I talked about our need to circle the wagons. Not forever, but for the time being. And just as we’ve plucked the Japanese beetles from the garden, we must do the same with as many distractions, no matter how lovely or fun they may appear to be, as we can in our lives.

And so, we have decided not to travel more than two hours away (other than taking Claude back to the University of Michigan) for the next six months. Nor will we have extended houseguests for at least the next year (we’ve had four in the two years that we’ve lived in this house with the latest, Nancy, having transitioned to her own home at the end of July). And instead of driving 40 minutes away for Lyra’s various therapies, she is on a waiting list at Akron Children’s Hospital, which is five minutes from our home. We are even giving ourselves permission to stay home when there are performances, fundraisers and other events that we typically feel obligated to go and enjoy.

It feels liberating. Like taking back our lives.

Kumbayah Birthday

IMG_2149The calm trip home from Vermont took two days and we arrived in Akron late on a Monday evening. The following Wednesday, our Lyra turned one.

On her birthday, I sent Lyra to daycare with her brother Leif. After all, she is a fifth kid and I hadn’t been home in two weeks.

That evening, I made a ratatouille with the fresh vegetables I had picked up that day from our CSA while Jules made lemon cupcakes from scratch. None of the boys had to work and were home to celebrate their sister’s birthday. Three of our dearest friends joined us including Vanessa, who is otherwise known as Lyra’s personal photographer. She brought a CD containing a slide show of Lyra’s birth, set to the Beatles song, “Here Comes the Sun.” Our home was full of our children and friends, all joyfully celebrating Lyra and this first year she has been with us.

It was also the last day Lyra was cross-eyed. She had surgery the following morning. More on that up next in “Lyra’s Latest: After Our First Year.”

Lyra’s Latest: Fully Human & Needing a Civil Rights Movement

Your daughter was born with Down syndrome. Do not expect her to read, write, do math or ever drive a car.

A physician said these words to the parents of a buoyant baby girl, aptly named Grace, in the days after her birth at UC Davis Medical Center. It sounds like something a doctor might have said in the 1960s. But in fact those words were spoken in August of 2012, the same month that our daughter, Lyra, was born. The parents who were told this spent the first months of their daughter’s life in a gloomy fog, bereft because of what they were told not to expect.

Too many physicians, people whose job it is to know the latest research and trends, do not understand the realities of a Down syndrome diagnosis but instead cling to limiting portrayals. Why is that? That falsehoods regarding a diagnosis of DS are tenaciously held and promulgated by anyone, but especially health care professionals, needles me as I try to understand why. The only explanation I’ve come up with is that it is still acceptable to discriminate against this specific population.

Which is why we need organizations like the National Down Syndrome Congress.

Driving to Denver: Our First National Down Syndrome Congress Convention

While always a resource for information, support and research, the primary function of the non-profit NDSC is holding the annual convention. For two and a half days, sessions are held addressing they myriad challenges families of people with Down syndrome face, as well as sessions for people with DS themselves, at different ages and developmental stages. Many families come every year and one such veteran of the convention, a mother from Arkansas, recommended we stick to the sessions that relate to our child’s age.

Max and I, both incurable students, were eager to attend but the roughly 1400-mile drive might have been a deal breaker if the destination were not Denver. The fact that Max’s sisters and their families live just outside of Denver sealed the deal. And so, taking ten-month-old Lyra,  3-year-old Leif and and thirteen-year-old Jules, who helped navigate and keep the babies happy, I drove to Denver. Max flew out two days after we left, yet arrived six hours before we did.

Shared Fear

The first session we attended was on speech development. Even though it was four and a half hours long, it was heavily attended. Primarily an overview of the benefits of early and ongoing speech therapy for children with a diagnosis of DS, for me the highlight of the presentation was a short video. In it, five young women with Down syndrome were interviewed. Sitting at a table together, they discussed their training—two women were certified pre-school childcare assistants, having taken 90 hours of training at their local community college—and their careers. They talked about boyfriends and parties. Easily understandable, their language was rich and their conversational styles flowed naturally and comfortably.

At a break, I began talking with the families around me. They, like me, want their children to speak clearly and fluidly. “People judge intelligence by speech, it’s not fair, but they do,” said one father, distilling one of my greatest fears about my daughter’s Down syndrome in one short sentence. The truth of his statement was like a figurine on a revolving dais spinning slowly in the middle of our conversation. That some people with DS have difficulty speaking may not be reflective of their cognitive abilities, but rather due to physical challenges including hypotonic mouth muscles and the forward placement of the tongue. This fact is not widely understood by the general population. Instead, those who speak unclearly, or not at all, are deemed ignorant and too often are dismissed as valid members of society.

Multiple Intelligences

In 1983, Howard Gardner’s book, Frames of Mind: The Theory of Multiple Intelligences, broke down general intelligence in humans to these eight modalities:

  • Linguistic intelligence
  • Logical-mathematical intelligence
  • Musical intelligence
  • Bodily-kinesthetic intelligence
  • Spatial intelligence
  • Interpersonal intelligence
  • Intrapersonal intelligence

In our society, general intelligence is primarily understood by the strength of someone’s linguistic intelligence and logical-mathematical intelligence. College entrance exams exclusively test these two modalities, which also happen to be the two most challenging modalities of intelligence for people with a diagnosis of Down syndrome.

On the other hand, it has been repeatedly shown that many people with DS are hyper-social and hyper-sensitive, that is, they have strong interpersonal intelligence. And many folks in the DS community joke that the 21st chromosome is the “music” chromosome as singing, dancing and listening to music are passions of a significant number of people with DS. Our own girl loves her music-man brother, Hugo. When she is fussy, Hugo often takes her to the living room and plays the guitar or piano while singing, just for her. She instantly quiets and remains content for as long as he makes music. She does not, however, fall asleep while her personal minstrel plays for her.

Nobody Walks in L.A.

When we weren’t in sessions, Max and I walked around the exhibit hall pushing Lyra in her stroller. There were things to buy like eyeglasses and clothing specifically designed to fit people with DS. We purchased a speech therapy kit for Lyra that includes several straws, to be introduced at graduating levels because, unlike a bottle or sippy cup, when drinking from a straw, the tongue naturally moves to the back of the mouth. I spoke at length with a remarkable young couple, Tim and Liz Plachta, who have created a post-secondary scholarship fund for people with Down syndrome.  Ruby’s Rainbow is named for their young daughter who has a diagnosis of DS.

At a table for Adam’s Camp, a program in the Rocky Mountains where five therapists work with five kids for five days to get a boost in therapy goals, we met a father whose child with DS was ten years old. No longer in shock and overwhelmed, like so many of the parents there with babies, this dad was relaxed. As he chatted with us, his three children crowded around Lyra’s stroller, making her smile and clap. He told me he and his wife plan their yearly vacations around two things: a week at Adam’s Camp for their son with Down syndrome (while his siblings are at the typical camp on the same YMCA campus) and the NDSC convention.

“You know, we came the first time to the convention when our boy was just a baby, just like your little girl there, and the keynote speaker was this woman from LA. She was an actress with Down syndrome and I recognized her from TV shows she’d been on. She also worked in an office and drove there in her convertible BMW. In L.A. That changed everything for us, like how we think about our son and his life. So we’ve been back every year since then.”

Unlike the actress with Down syndrome, I’m not so sure I can drive in L.A., where the traffic is notoriously congested and the drivers are, even more notoriously, aggressive.

The Goal of Therapies

Shortly after Lyra was born, our local support group gave us a copy of the book, Gross Motor Skills in Children with Down Syndrome by Patricia Winders. Ms. Winders was at the convention and presented one session for pre-walkers and another for children who are already walking. Max and I both went to the session on pre-walkers and I am glad we did. After breaking down the early stages of gross motor skills into five stages, she asked for baby volunteers and chose Lyra to demonstrate Stage 3. While she sits up quite solidly now, Lyra does not put her arms out to catch herself if she tips over and, as a result, we cannot leave her alone sitting up unless she is on a padded surface. Ms. Winders had Lyra doing any number of seemingly impossible tasks in no time flat.

A toddler's pronated foot
A toddler’s pronated foot

That was thrilling, but what stuck with me the most from that session was the feet of another child. They haunt me. With their lax ligaments, children with Down syndrome can easily develop pronated feet if they do not receive early interventions. Stage 4 was demonstrated by a two-year-old girl, who has been “cruising” furniture for a few months but was not yet walking independently. This small child’s ankles bulged over her instep while her toes splayed sideways looking almost like fins.

“Has anyone recommended she use Sure Step braces?” asked Ms. Winders.

“I took her to the orthopedic surgeon,” said the girl’s mother, “and he just said, ‘She has Down syndrome; she’ll walk funny,’ and he didn’t want to do surgery.” It doesn’t take a doctor to see that the girl’s feet would eventually cause her pain from the completely avoidable malformation that was occurring. This mother was not derelict; she had taken her child to a specialist. The doctor’s attitude is reprehensible, if not malpractice.

Patrica Winders rolled her eyes and told the mom to get her daughter in Sure Step braces, not something like Sure Steps, but precisely that brand. And she stated to the entire audience the same point that the speech therapists we’d listened to had told us in other sessions:

The goal of early interventions is not to speed up the achievement of developmental milestones; the goal is to learn the skills correctly, which is much easier to do than it is to unlearn incorrect patterns that a child has developed as compensatory techniques.

Breaking News and Controversy: To Have DS or Not? That Is the Question.

In the middle of the convention, I received a text message from my friend Mariko, whom I have known since high school. Mariko’s text had a link to this Boston Globe article in which researchers have been able to “turn off” the extra 21st chromosome in cells taken from a man with Down syndrome. The application of this research is a long way from being determined.

To be able to end or remediate the medical complications and the cognitive limitations many people with Down syndrome face may seem to many, at first blush, a no-brainer. But I felt stopped in my tracks. The NDSC mantra is “More Alike than Different” and their work in educating society and supporting families encourages an attitude of integrating, not marginalizing, people with Down syndrome. There are many slogans on things from T-shirts, to Facebook groups (including one I belong to), and the aforementioned non-profit, Ruby’s Rainbow, that refer to Down syndrome as “rocking the 21st chromosome.” So what does it mean if somewhere down the road the medical technology exists to eliminate the effects of that very chromosome?

In the days since I first heard of this new research, voices have piped up to state that this would be akin to cultural genocide, including this Canadian woman whose daughter has DS:

We’ve got a genetically similar community, visible minority who are being targeted and terminated globally. People think, Well, this is the way it is and these people just shouldn’t be.

This news initiated one of the most achingly honest conversations I have read on a social media Down syndrome support group. Generally, the comments on that group are full of cheers for each others’ children as they master some milestone or another. And just as often, words of comfort are given, and prayers offered, when families post about set backs or serious medical interventions, such as open-heart surgery. The idea of “turning off” the extra 21st chromosome strikes this chord with so many families: It is offensive that people do not accept our children the way that they are, but it is also true that our children struggle greatly not only with health issues but also learning their basic gross and fine motor skills, speech and hosts of other things that we in the “typical community” take for granted. People with Down syndrome may be more alike than different from people without an extra 21st chromosome, but their successes often come due to intensive interventions and plain old work. Hard work.

And after all that work, even if a child with Down syndrome grows into the most independent, successful adult, what awaits is a cruel sentence. Alzheimer’s is not a matter of if, but when. All adults with Down syndrome begin manifesting the physical pathology of Alzheimer’s in their forties. 80% will go on to develop dementia. And, yes, there was a session at the NDSC convention on this subject.

Again, what we don’t know is what this latest research will bring to bear on the lives of today’s children with a diagnosis of Down syndrome. Research on Down syndrome, and the attendant complications, is being conducted worldwide. At the NDSC convention, Lyra gave saliva samples to a scientist studying autoimmune disorders in Down syndrome (Lyra’s hypothyroidism is considered an autoimmune disorder) at the Linda Crnic Institute for Down Syndrome.

What Does it Mean to Have Down Syndrome?

If someday there is a medical way to “turn off” the extra 21st chromosome, I suspect that the Down syndrome community will treat it similarly to the way the Deaf community has responded to cochlear implants as described in this article:

The conflict concerning cochlear implants is centered on the definition of disability. If deafness is defined as a disability, as it is from the medical view, it is something to be altered and repaired. On the other hand, if deafness is defined as a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today’s society, should be readily accepted and supported. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.

I don’t know what we, or Lyra herself, would one day choose to do. Of course I would want to spare my child the suffering of early onset Alzheimer’s, but everything about my daughter’s diagnosis of Down syndrome has caused me to rethink so much of what I once assumed.

Ask Them

The bigger question is whether having Down syndrome is such a bad thing. Yes, all the medical and health issues suck, suck, suck. If I could wave a wand and take away all the attendant medical issues that come with Down syndrome, I would. Without hesitation.

But consider this: People with Down syndrome are vastly happier than people without Down syndrome. Physician and researcher Brian Skotko published the following findings:

  • 99 percent of adults with Down syndrome reported feeling happy with their lives
  • Another 97 percent said they liked who they were and
  • 96 percent liked the way they looked

Furthermore:

  • 97 percent of siblings ages 12 and older expressed feelings of pride about their brother or sister with Down syndrome and
  • 88 percent were convinced they were better people because of their sibling with Down syndrome

The Cost of Ignorance: Justice for Ethan Sayer

In Maryland last January, a young man with Down syndrome tried to watch Zero Dark Thirty for a second time in a movie theater before buying a second ticket (his family believes, based upon his phone record, that he was trying to do so with his cell phone). Three sheriff’s deputies, who were working mall security, brutally apprehended Ethan Saylor for this offense. Mr. Saylor’s caregiver was present and told the officers not to touch her client because it would escalate things. She was right. It did.

Instead of treating him like they would any other adult human, intead of listening to the simple advice of his care giver, instead of using training they claimed to have received for dealing with people with developmental disabilities, the sheriff’s deputies assaulted Ethan Saylor. And instead of watching Zero Dark Thirty at the time it was scheduled, the other audience members witnessed the beginnings of a murder. After being dragged out of their view, audience members report hearing Mr. Saylor cry, “I want my mommy!” as he was shoved to the floor, handcuffed and, according to the medical examiner who conducted his autopsy, asphyxiated. His death was ruled a homicide

In January of 2013, in the United States, a man with Down syndrome was murdered by the authorities. For a movie ticket? No, for being different.

In the community of families that include someone with a diagnosis of Down syndrome, we are all Ethan Saylor’s family. His murder is the worst fear of a parent with a child who has DS. I believe Ethan would not have been murdered had he been a man without Down syndrome.

IMG_2087I met Ethan’s mother and sister at the NDSC convention. Hardly their first time at the convention, they’ve been regular attendees since Ethan was Lyra’s age. They had a table set up with buttons. I took several. They had photos of Ethan from the time he was a baby, with tufty blonde hair, to his high school graduation. And they had displayed his collection of police and military paraphernalia—badges, patches, hats. Ethan, I learned from his sister, was a big fan of the police and military. One of their biggest.

I talked with his sister, a pretty woman in her twenties with blonde hair framing her face in soft ringlets and blue eyes that held my gaze while we spoke. She told me that the moms of kids with Down syndrome who have been keeping up the pressure, particularly in the blogosphere, have sustained Ethan’s family as they seek justice. It hasn’t come easily. The Sheriff’s department investigated its own officers and found no need to press charges. After the release of the Sheriff’s report, witnesses to the murder have contacted the family to tell them the report was inaccurate.

The Washington Post reported last week that, “with good reason, the Justice Department is now investigating the incident as a civil rights case.”

The NDSC Takeaway

Max and I learned so much at the National Down Syndrome Congress convention about how we can help our daughter realize her full potential. We found information, support, community and tools to help us be the parents she needs us to be.

But all we learned was not bright. We learned how far our society is from treating as fully human those who have a diagnosis of Down syndrome. From baby Grace, born in a modern hospital affiliated with a major university, whose life doctors summarily dismissed her life as having any potential, to Ethan Saylor, dying at the hands of the officers sworn to protect him as a citizen.

Next year’s NDSC convention will be in nearby Indianapolis in early July. If you’ve ever been interested in attending, I strongly encourage you to do so. You’ll find us there.