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Presume Brilliance

lyra

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

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

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

The Long View

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

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

Down Syndrome Self-Advocates

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

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

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

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

Seeing Myself in Sarah

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

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

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

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

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

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

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

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

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

Wait, Was That Who I Think It Was?

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

Huh? She wrote back.

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

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

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

The Awesome Tim Harris

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

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

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

Oh yeah! (Tim Harris)

Oh, yeah! (Audience)

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

Oh yeah!

Oh, yeah!

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

Oh, yeah!

Oh, yeah!

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

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

I want to thank not only Matt for opening his bakery, but his family for supporting him and his dreams. (Mr. Cottle returned to his seat with his family.)

I am a superhero. My super power is love.

Be the light. When I was born, people told my parents they were very, very sorry I had Down syndrome. I guess they didn’t know how awesome I’d be. I’m sure it was scary for my parents but they always saw the light in me.

Use your light to help others. Everyone can be awesome.

Oh, yeah!

Oh, yeah!

Meeting Mr. Awesome

On the last day of the convention, I ran into a man in the lobby as I was turning with Lyra in my arms.

“Are you Tim Harris?” I asked.

“I’m Tim,” he said.

“You gave such a great talk the other night!” I told him.

“Thank you. But, but, tell me, is this your daughter? Do you know she is awesome? She is going to grow up and do awesome things and my foundation is going to give her a grant to follow her dreams. Don’t ever forget she is awesome!” And then he was gone, ushered out by his family who, perhaps more than everyone else, struggled to stay on schedule.

“You know, I heard he didn’t used to be so good at talking with people, that his success has really propelled him into everything he is now,” said one of our friends when I told him Lyra and I had just met Tim Harris.

It’s an upward spiral: the more Tim Harris accomplishes, the more he can accomplish. Do people like Tim Harris, Megan Bomgaars and Sarah Savage Cooley have the support of their families and friends? Certainly. But is that not true of most, if not all, people leading genuinely successful lives? Imagine, however, if their parents had believed that a child with Down syndrome would not read, write, do math—let alone write books, make films, own restaurants and start foundations? Sadly, that misconception is still widely held among people who do not know someone with Down syndrome and even a few who do. Yet these three adults and others with Down syndrome are not only succeeding personally, it is far from hyperbole to say that they are making the world a better place for others. Who among us can say the same?

Just as Lyra teaches us at home, these adult self-advocates teach me more than any session I have attended at the NDSC convention. When I talk with someone like Sarah Cooley or watch Megan Bomgaars’ video or listen to Tim Harris speak, I am inspired by them to live my life better, fuller and kinder. They are models not just for what my daughter can aspire to become, but what I can aspire to become too.

Two Years This Daughter

 

The first two years with a baby with Down syndrome are a lot of work, but then it all gets easier.

I have repeated that sentence, spoken by the caseworker from our county’s DD Board when Lyra was only a few months old, many times over in my thoughts. Lyra turned two years old in August of last year, and for the past six months, I have considered where Lyra is now, and also how our family has transitioned and developed with this fifth child, our only daughter who has Down syndrome.

Yet I have struggled in my attempts to write about this pivotal place where we find ourselves after long anticipation. Two months ago, I wrote “Two Years This Family” intending to immediately follow that essay with “Two Years This Daughter.” And I tried, writing two lengthy drafts that I promptly shelved. Instead, I found more enjoyment writing other pieces, which are also about Lyra, the reality of Down syndrome today and how our society, by in large, remains misguided in its understanding and treatment of people with Down syndrome. Those essays, like all my writing, did not come easily, but were the products of days spent at my desk, writing and re-writing until my brain, as it does after a long day of writing, would buzz like a nest of agitated hornets. That’s when I know to step away from my computer, consider a shower and head out for a long hike. A missing sentence or section or elusive phrasing will sift up, time and again, when I am deep in the woods, breathing hard as I hike up the hills of a two-mile trail in the metropark near our house, not concentrating, but lightly holding the piece of writing, as though it were floating like a cartoonist’s thought bubble, just above my head. It was good, hard work, resulting in essays that I submitted for publication rather than post on Whoopsie Piggle.

The problem with my previous attempts to write about Lyra at the age of two is the essays were boring to write and, thus, boring to read. It is my job, as a writer, to make the material engaging. But describing therapy sessions that began, in the case of speech, when Lyra was a few months old became a dry litany in my hands: we did this, and then this, and some more of this with a little added that, until here we are today, still doing some of the same, but not all the same and trying out some other things as well. Let’s skip the process for now and get to the results:

  • Lyra walks and
  • She talks and
  • She feeds herself and
  • She plays with toys, but more often disappears in the house and takes everything out of any cupboard, dresser drawer or laundry basket she finds within her reach that has been left unsecured. “I see it has been raining baby clothes,” Max says after Lyra has shoved, yet again, several of her shirts or Leif’s pants through the railings of the balustrade on the second floor of our home. Clean clothes purloined from the dressers in the adjacent bedrooms only to be flung onto carpeting coated in cat hair. Thanks, kids.

Yes, Lyra’s acquisition of early childhood milestones came later than for most typical children. But not all that much later and now, at two and a half, Lyra is pretty much like any two-year-old.

The difference lies less with our daughter than with us, which is what Lyra’s caseworker meant by “a lot of work.” Before Lyra, I had never broken down the mechanics of a baby learning to hold up her head, sit up, crawl or walk (gross motor skills). Neither had I considered that my babies picked things up by first using their fingers as rakes and later developing a precision pincer grip with their forefingers and thumbs (fine motor skills). Nor had I worked to train a baby’s tongue to move into the mouth and not rest on his lips (important for speech). I know how to drive a car even though I don’t know the first thing about the mechanics of automobiles. Similarly, I have long understood how to raise small children but my focus was on behavior and education, not how their little bodies went from infant blobs to motoring and motor-mouthed toddlers. They took care of that part of development themselves.

This begs the question, for me at least, how would Lyra have developed without interventions? I have no doubt that she would have learned to sit up, crawl and walk, but perhaps later. More importantly, I believe many of the interventions have helped Lyra learn how to move and use her body correctly, minimizing any overcompensation for her low muscle tone, or hypotonia, a hallmark complication of Down syndrome. And as a socially extroverted child, there is no question Lyra would be talking even if she had not had any speech therapy. However, she would be harder to understand. That is because we have spent over two years helping strengthen Lyra’s tongue and train it to stay, for the most part, in her mouth. The importance of tongue placement for speech was explained to us by Talk Tools founder and speech therapist, Sara Rosenfeld-Johnson, at the 2013 National Down Syndrome Congress convention. She told the audience to sit back in their chairs and lift up both legs so that they were parallel to the floor. She then asked us to move our legs, in tandem, from side to side, around in circles, up and down. After that, she asked us to scoot forward on our seats and try to do the same thing with our legs. What was simple when sitting back was nearly impossible when sitting on the edge of our seats. The same is true with tongues and speech. When positioned on the lips, a tongue is far harder to control and speech less precise than when a tongue is positioned inside the mouth.

There are many subtopics and nuances to Lyra’s interventions, such as the significance of music in Lyra’s learning or long-term breast feeding, that are important, sure, but those are perhaps best described in separate essays.

I wish I had worried less about the person my child would become and just enjoyed the baby she was.

I also regularly think of this quote, which I included in the essay, “Learning About Lyra,” more than two years ago. When I first read those words, just weeks after Lyra’s birth, in a book about children with Down syndrome, I knew I should do just that—stop worrying. And I also knew I could not. I had never had a child with Down syndrome. Before Lyra, I knew only one other child with Down syndrome, the daughter of an acquaintance, whom I met once, when she was a baby. After Lyra’s birth, I began to meet other families in the area through our local support group, The Upside of Downs. But equally as helpful has been a closed Facebook group for mothers of children with Down syndrome who were born the same year as Lyra. These support groups helped in the early days as we learned what we could expect for our daughter both immediately and as an adult. Yet I would be lying if I said I have not found myself, on occasion, comparing Lyra to other babies with Down syndrome who acquired developmental milestones before she did.

It turns out what has most helped me to stop worrying about Lyra is Lyra herself. As she moved out of infancy, her personality revealed itself, as any baby’s does. She’s an outgoing, curious child who loves music, dogs, cats and her brothers. Five-year-old Leif now complains that Lyra tackles him and all too often Lyra yells when he pries toys or cookies out of her hands. It’s no different than the way my first two children interacted when they were five and two.

Lyra, my youngest child, is my girl. And she’s Max’s girl. She’s her brothers’ sister and a friend to her mates at daycare. Two years after her birth, all that Lyra is has normalized. Her Down syndrome, her aphakia and contact lenses are no longer novel to us. Just as having a fifth child who is a daughter (a daughter!) has become routine. (Okay, so maybe the daughter part still tickles me like getting a long-desired present.) The point is we are a family of seven, each of us having different personalities and abilities. Claude, who is quiet and steady except when he’s excited, now writes fiction with content more intense than expected from someone so young. Hugo is confident, if not self-absorbed, demonstrably affectionate and sings like an angel. Jules, whose name means youthful, has the oldest soul of us all. He cares for everyone and everything while quietly carrying deep hurts and anger. Leif is like Hugo: bombastic, demanding and sharp-witted. Max, with his implacable patience, may have missed out on the thing he does so well, being a dad, had we not tumbled into his life when he was in his early forties. And I, who spent much of my childhood alone and lonely, never lack for company. Or love. (Could we queue in a little Sister Sledge here, please? You know the tune.)