Tag Archives: 2013 National Down Syndrome Congress converntion

Would I Cry?

When he was a senior in high school, my eldest child, Claude, called me a bad-ass mother (which I mistakenly took as pejorative until he explained the parlance of his generation). It’s true, my parenting mantra is “push and support.” So why, in the two years since he graduated high school, have I cried like a melodramatic helicopter mom at every turn in Claude’s life?  Fortunately, with each adult milestone Claude passes, the chest-wrenching feeling diminishes and I cry a little less. The day before this past Mother’s Day, I was dry-eyed as I snapped photos of my son, Hugo, who, dressed in a sports coat and white shirt, stood arm-in-arm with Claude, whose new REI outward-bound backpack was strapped on his back over a quick-dry travel shirt. Then Hugo and I watched Claude peel off his layers for airport security, walk through the TSA doorless doorway, reassemble himself and, turning towards us, wave before heading off to his gate. Ardently, Hugo and I waved in return. I sucked in my breath. “Oh, Mama,” said Hugo as he placed his arm around my shoulders and pulled me to his side, “don’t cry, Claude’s going to be fine.” Though his response was sweet, Hugo’s words were misplaced. My tears these past two years have not been out of concern for my eldest son—far from it. In fact, I never cry over Claude, not really. His beginnings are my endings and grief, mixed with no small amount of joy, is the source of these sudden showers.

"Dream or Working Virgin" by Vincente Cutanda
“Dream or Working Virgin” by Vincente Cutanda

The day after he graduated from high school in June of 2012, Claude boarded a Greyhound bus for his grandparents’ home and a fulltime job in northern Michigan. Each summer, my three oldest boys have stayed for weeks at a time with these same grandparents, my stepmother and her husband (who is not my father; yes, we are a very modern family), who live just a block from Lake Michigan. And yet the day after Claude left, I called my stepmother and cried so hard she could not understand my words, though she knew exactly what I was saying.

“I’ll…never have…the three of them…together…on a road trip…again…it’s over…how can it be that it’s already over? I never…took them…to Yellowstone or…or, or well…other places,” I said sounding like a five-speed transmission bucking a new driver, my diaphragm slam-dancing in my chest. My stepmom said she understood and let me reel on and on until there was nothing left to release and, as abruptly as it had started, the episode ended.

Look, it’s no secret that I love big kids, especially my own. And neither is it a secret that I’m not terribly crazy about small children, except my own. Small children are often noisy and irrational. I think perhaps that’s why I breast fed all my kids for so long—nursing consoles otherwise inconsolable children thereby quieting them, sigh of relief for that, which is to say nursing is selfish on my part. I love who these people I raised have turned out to be; still, gone are the warm days of feeling like a mother quail with my little chicks following behind me in a row as we explore the world both near and far. As it should be, the reward for good parenting is adult children who venture out into the world on the paths they choose. Be that as it may and even with a career and full life, I am not immune to a touch of melancholia at my nest emptying out.

Other Mothers, Other Children

When I was in high school a woman on my street often included me in activities with her own children—events at the local university, drive-in movies, Fourth of July fireworks. When I wanted to take piano lessons, she told me I could practice on her piano since my family didn’t have one. At the time, I wished this neighbor was my mother and her family my family. As an adult, she was one of several women after whom I fashioned my mothering. When my friend’s daughter was in her early twenties, the two of them traveled together to India, seeing large sections of that subcontinent country by train, their sparse belongings in backpacks.

And so, modeled after my friend’s adventures with her young adult daughter, for many years I told my boys I would take them each on a trip, just the two of us, the summer after they graduated from high school. But when Claude graduated, I was seven months pregnant with Lyra, my fifth child. And he took the only fulltime position he could find, with the streets department in Charlevoix, Michigan, because even using all of my savings, which we did, there was not enough money to pay for Claude’s expenses his freshman year at the University of Michigan. The fact is, even with him working that summer we still weren’t sure how we’d cover his expenses as Lyra was born just ten days before he moved into the dorms in Ann Arbor. The poor financial timing of Lyra’s birth was compounded by her unexpected diagnoses of Down syndrome and bilateral cataracts. I wasn’t able to resume working for many months.

The truth is having an older set and a younger set of children often means letting go of previous plans, which I am not always happy to do. Having raised three young boys largely on my own, it seems remarkable I signed up for a second tour of duty. But the trade-off is a no brainer because with Max I am not raising Leif and Lyra alone and neither am I raising my older three children alone. Two more children plus a father for them all.

Having It All

“Don’t come home when your term ends. Your scholarships are paying for this trip, stay a couple of weeks longer and travel,” I told Claude after he announced he had been accepted to study spring term in Granada, Spain. We did not immediately plan a mother-son adventure because a friend of Claude’s thought he might join him. But a few weeks after Claude flew to Spain that Mother’s Day weekend, the friend’s plans fell through. The timing was bad for me. I recently acquired a second investment property that needs work before I can lease it and I rent to graduate students who mostly arrive in July. Nor was a trip financially ideal because, again, I’d just acquired a second investment property that needs work before I can rent to graduate students who mostly arrive in July.

But this I know: Timing for important things never seems ideal and money always works out.

I went to my bank and they gave me a credit card with zero percent interest for twelve months. Claude, like me, prefers traveling on the cheap because if you stay in Hiltons, how is the experience any different than just staying in the States? Using Rick Steve’s Spain, we agreed to find affordable hostals (a step above a hostel, hostals are a step below a hotel and in France they are usually called “pensions”). Max told me not to worry about my properties; he’d take care of the incoming tenants, the workers. I worried about leaving Lyra, I worried it was too much to ask of Max who, you know, also has a fulltime job. “Don’t worry about us, we’ll be fine. Go, this is just what you need.” And so I did.

Spain with My Son

Instead of pre-marital counseling, couples preparing to make a lifelong commitment should leave the country together. The challenges of travel, especially in a country where the native tongue is not that of the traveler, often reveal the essence of a person’s character. How does someone respond to lost train tickets, missed trains, difficulties finding a room for the night, discovering that the locals substantially overcharged you, the tourist, and there’s nothing you can do but pay up? All these things happened to us. When the first of them was resolved by a taxi driver running up to us with Claude’s lost notebook, in which he had stored our 200€ ($260) train tickets to Valencia, we came upon the mantra for our trip: Everything always works out.

The last time I spent two weeks alone with Claude was before my second child, Hugo, was born nearly eighteen years ago. Claude is an interior guy, which I have long, if not always, known. But without the cacophony of siblings surrounding him, it became unmistakably clear that Claude, unlike all his brothers (and his mother) does not engage in unnecessary speech. He’s not inscrutable, in fact, his company is very pleasant but he does not chatter idly. However, two topics elict animated verbosity in Claude: art and politics. Trips can either be deep or broad; we chose broad and traveled to five cities in twelve days, giving our trip coherence by focusing on art (mostly in museums, but not always). Both of us have studied art history and to talk with Claude about the work we saw was to talk with an equal. Claude knows more about pop art and artists than I do and he remembers more about other periods and movements (in all fairness to the mother, the son has studied these subjects more recently than she).

But Claude is also an artist and much of what we saw inspired him. I learned he loves Goya, especially the less formalized works the artist painted for his own home rather than those for the Spanish Court. At the Guggenheim Museum in Bilbao, Claude turned to me and said, “I wonder how much an air brush would cost?” Whoopsie Piggle’s logo on WordPress, in which rows of silhouetted faces look forward while one golden face turns upward, is a piece Claude did with an airbrush. Ironically, if not ridiculously, now that Claude has dropped out of Michigan’s art school to study English and political science, he can take the art courses he always wanted to take but couldn’t when he had to follow the school’s prescribed programming.

More surprising to me, I discovered Claude speaks Spanish quite well. Well, how is that a surprise? the reader might think, the fellow just spent two months living in Spain. Sure, except that when he was in the third grade, the psychologist who diagnosed his severe dyslexia told me not to ever expect Claude to do well in foreign language and suggested I seek an accommodation to exempt him from studying foreign language in high school. That psychologist made so many of Claude’s successes possible when she accurately diagnosed him and guided me to effective remediation options. But traveling Spain with him as my personal translator, again I was reminded that even the best experts can unnecessarily and unintentionally limit a child. “I know this probably sounds corny,” I said to Claude as we walked in the middle of a large boulevard park toward the Mediterranean Ocean in Valencia, where we were told we’d find the best paella restaurants, “but I remember when you were brand new and only had instincts for eating and voiding. You were a blank little slate and in no time here you are getting us around a foreign country speaking a second language.” Claude didn’t respond, my observation only remarkable perhaps to an adult who has watched the newborn become the child who became a man.

Síndrome de Down

“Do you speak English?” I asked the man working at a Starbucks in Barcelona across the street from architect Antoni Gaudí’s unfinished, yet spectacular church, La Sagrada Famíla. Generally, I always try to speak the language of the country I am visiting, but I did not know how to say what I wanted to say in Spanish. Probably in his late twenties, the man had short black hair and a well-trimmed, equally black beard on a face of fine bones—simply put: he was a handsome Spaniard. He told me he spoke a little English.

“Yo tengo una hija con Down syndrome,” I said and my disobedient eyes welled up. The young man reached across the counter and grabbed my hands with both of his. “I hope one day she can work somewhere like this, with such nice people.” Claude, who had gone to the bathroom, walked up and leaned in as he often did when translating for me, but he didn’t say anything. Instead, he quietly watched the barista and I exchanged sentiments in languages neither of us really knew. As we walked out the door, only then did Claude speak. He asked if I was okay. Whether my encounter with the people at Starbucks left Claude touched, embarrassed or indifferent, I cannot say.

We had stopped into the Starbucks before visiting La Sagrada Famíla so I could use their Internet to resolve a pressing matter involving the rental houses. The table where we sat with our cafés con leches was only a few feet away from the narrow end of the service counter. I could see the employees as they worked behind the counter but I did not pay attention until a young woman, who had come from a back room of the café, walked passed our table and behind the counter with the rest of the employees. I whispered to Claude that I thought the woman had Down syndrome but he was writing in his notebook and glanced up only briefly. I went back to my work too, only to snap my head up seconds later when I heard yelling and laughter. The handsome Spaniard, with the fingers of his right hand pulled together and pointed in his own direction as his hand waved like a nodding head, was laughing and yelling at the woman with Down syndrome. She, in turn, lifted her right arm and using her hand like a knife, sliced her points back at the man. I was only briefly concerned by the loud interaction in a language I did not understand (which may not have been Spanish, but Catalonian, the distinct language of that region), because the mirth between the two of them was evident as was the man’s frequent use of the word “guapa,” or beautiful, as he addressed the young woman. When she again walked passed our table, this time carrying a bus tub of dirty dishes to the back room, she was chuckling to herself.

(Note: I have never seen anyone with Down syndrome working in a Starbucks in the United States but a simple Google search found that the most identifiable coffee retailer in the world has long employed people with the most common genetic disorder.)

Not infrequently, I saw other adults with Down syndrome in Spain and consistently I observed something subtle yet, I believe, significant: They spoke for themselves. Yes, as simple as that. They spoke and others listened and responded. You see, routinely in the United States when I have spoken with adults with Down syndrome, their family members often repeat, with added details, what was just said as if the person with DS needs to be translated. Or more disheartening, which has me questioning how most Americans respond when approached by someone with DS, the family members redirect the person with DS under the mistaken assumption that listening to someone with DS bothers me. (It is important to note that neither scenario occurred in the many conversations I had with adults with DS at the National Down Syndrome Congress convention that we attended the weekend after I returned from Spain. I wonder if family members felt they could let their guard down at such an event or if in general the population who attends these annual conventions have adopted a different approach?)

Drool over Quitapenas' daily menus on Facebook.
Drool over Quitapenas’ daily menus on Facebook.

“We don’t get upset about much,” Domingo explained when I asked him about what life was like for Spanish people with Down syndrome. Along with his wife, Marta, Domingo owns Quitapenas, the best tapas bar in Toledo, if not all of Spain. The first time Claude and I stopped in, for lunch, Domingo told us in a mix of Spanish and English, “This restaurant is like your home—have some drinks, eat here and you will feel at home.” Truer words were never spoken and we not only returned for dinner that night but we changed our train tickets, the ones that had toured Toledo in a taxi without us, to eat yet one more time at Quitapenas with our new friends. “People with síndrome de Down,” said Domingo, “they are just, you know, with us. It’s not, what you say, a big problem to us.” I have not done enough research to qualitatively understand how the Spanish treat their citizens who have Down syndrome, but from my two-week observation, Domingo’s assessment seems accurate.

Launched

After ten days and four cities, Claude and I returned to Madrid and, hands down, our favorite hostal, which is owned and run by Anuncia and Sabino, the Spanish grandparents anyone would want for their own. On the terrace of the fifth floor apartment, which has just five rooms for guests, Anuncia dries the bedding on laundry lines while just inside the family canary is brought in his cage for a few hours each day to sing for the passersby on the plaza below.

“I’ve had a great time, this has been such a good trip, Mama,” said Claude as we walked across the Plaza Mayor on our way back to Anuncia and Sabino’s after my last dinner in Spain.

“Me too. You know, Claude, when we get home and everyone is there and it’s crazy and I get overwhelmed, can you just remember that this is who I really am?”

I packed my stuff, and much of Claude’s, in both my backpack and an extra bag we had purchased for the purpose of making me a pack mule. Having purchased his ticket months before we knew I would be joining him, Claude’s flight home coincided with the first day the National Down Syndrome Congress convention. As a result, I left three days before Claude and, in case he did any more shopping, I took all his extra clothes and textbooks with me. Anuncia and Sabino came to the door to bide me farewell, even though “Claudio” was staying with them another night. Anuncia kissed me once on my left cheek and then many times on my right cheek and I began to cry. Life is a succession of farewells, or “passé bien” in Spanish, and our great trip was over. For two weeks, I felt like an old me I once knew, one who had time to dwell on the creativity found in museum after museum in city after city, a person who could have extended conversations with another adult, some of which lasted for days, a person who didn’t worry much. Yes, I missed my baby, Lyra, though truthfully, I did not think about my four children back in the States all that much, I knew they were fine without me. But return I must and return I did and not only did I leave behind, for a time, this man who is my son, I also left that old me, the carefree student who could wander Europe at will soaking in and sucking down to the marrow all that looks, feels and tastes good.

I was unnecessarily hesitant to ask Claude to go with me to the airport. Unbiden he announced that of course he was going to see me off. I was glad; the Metro ride required two transfers and a confusing 3€ charge just for entering the airport from the Metro station (and again when exiting). With Claude carrying the extra bag filled with his belongings, we walked from the Metro station to the airline’s counter to get my boarding pass, a distance longer than that between most Metro stops as was the walk from the counter to security. He walked through the security queue with me until he could go no further without a ticket and then he waited as I peeled off my layers of luggage, my jacket, my shoes. While doing so, I had a wonderful, if disjointed, conversation with a man and a woman who were behind me in the security line. Claude later told me he thought they were husband and wife, but they were father and daughter. Maria had on an elegant short-sleeved dress with a fitted, cream-colored bodice and a navy skirt. Her silky, dark hair, cut in a longish bob with bangs, moved like a curtain as she darted around like the rest of us to get her belongings into the security bins for the X-ray machine.

“My daughter has Down syndrome,” I said to the man in Spanish.

“Oh, wonderful! Hey, Maria, this woman has a daughter like you!” said the man, also in Spanish.

“My name is Maria,” said the beautiful young woman as she nodded at me and smiled. I learned that Maria, who lives in the Canary Islands with her family, is the second of four children, 27-years-old and, though he needn’t have told me, it was self-evident, the delight of her parents’ lives.

Claude, though a head taller than everyone else waving from behind the security line, could not seem to see me after I had reassembled my clothes and backpack onto my body. I walked back toward security, waving my arm widely, until I caught his attention. With the queue and the security operations between us, we looked at one another and smiled. I blew him a kiss and turned to walk to my gate. I looked back one more time and there he stood, my tall son, calmly waiting for me to disappear. I did not cry.

 

Comparing Lyra

Historically, I have not been a parent who has put much emphasis upon babyhood milestones. I was not concerned with the boys’ height and weigh percentiles. They held their heads up soon after birth, rolled over by three months, sat at around six months, crawled soon after mastering sitting, pulled up and cruised furniture by one year, walked at fifteen months. I never watched to see if they grabbed things by raking them into their hands or developed the pincer grip (thumb and forefinger). When I listened to them babble, I didn’t take note of what sounds they were making. Eventually, they all started talking—Hugo and Leif rather early (sentences at 18 months), Claude just before two years and Jules rather late (sentences at two and a half). The truth is, nothing about the way my four boys grew from infancy to babyhood to toddlers was remarkable.

All of that unremarkable development seems so luxurious now.

Getting Lyra Going

Lyra seems like any other baby. She sits up beautifully, reaches for toys, scooches 360 degrees in a seated position and backwards crawls. At nearly seventeen pounds, Lyra looks and behaves like any ten-month-old. But she is fifteen months old. Today, we have what we didn’t have a year ago, a span of time to see precisely what it means to have a developmentally delayed child. It is not that she can’t or won’t do certain things—she just acquires most skills at a slower pace.

We heard last summer at the NDSC’s convention that the purpose of therapies is not to hit milestones at the same time as most typical children—the purpose of therapies for children with Down syndrome is to teach them the best way to use their bodies. Because most babies with Ds have low muscle tone, or hypotonia, and laxity in their ligaments they often overcompensate with less than ideal habits, which can be hard to correct. For example, it is better to have a child with Ds slowly learn to walk with the proper foot strike on the ground than to have them walking earlier with pronated feet.

Lyra herself has a little compensatory trick she uses to go from sitting up to lying on her belly with minimal engagement of her core muscles: Sitting with her legs in front of her at 10 and 2 o’clock, she presses her face to the ground in between her legs and, finally, slides her legs out and back, like a swimmer’s arms doing the breast stroke. “Wow, is she flexible!” people have told me when they’ve seen her do this little gymnastic move. But this move does not train the muscles of her body to move the way she needs them to for later skills such as getting up to a seated position from her belly.

Imagine a tight spandex mini-skirt. Now imagine that a seam is sewn half way up the middle of the mini-skirt and you have Hip Helpers. Lyra wears them for an hour or so each day as she plays on her tumbling mat. With them on, Lyra cannot do the splits, and when she can’t do the splits, she engages inner thigh muscles, which is necessary for pulling up onto her hands and knees (the four-point position needed for crawling).

Lyra first popped up onto her hands and knees by herself four weeks ago, after months of working toward that goal. Every day she does it a little more and a little more. Once she gets her core strong enough, she will crawl on her hands and knees and as far as we are concerned, she can crawl for a good long while before walking. With my older kids, I was eager for them to walk because it meant I no longer had to worry about them crawling on dirty floors. However, crawling promotes kinesthetic brain development, helping the left and right sides of the brain to interact with one another—a fundamental requirement of later learning. Luckily, winter has set in here in Ohio and Lyra’s spends most of her floor time in our mildly clean house or that of her (far cleaner) daycare provider’s house.

Other Babies

Recently, we were invited to brunch at the home of friends we go far too long without seeing. Like our Leif, their son will be four in a few months and their daughter, whom Max had not yet met and I had not seen in six months, is eight months old. A baby ready to meet the world with eyes the size of shooter marbles, she seemed both relaxed and eager and didn’t hesitate when I took her from her mother’s arms. The first thing I noticed was how taut her core muscles felt under my hands as I held her. And then she reminded me that other babies grab on with their hands, like little monkeys who won’t fall off if you let go.

Lyra has a snuggly softness to her, even though she sits up ramrod straight, because her muscles are just never as taut as those of most typical babies. Though her hands are not flaccid noodles (as evidenced by the bruises she gave me a few weeks ago when pinching the underside of my upper arm while nursing) she does not grip onto me like a little monkey.

The two boys at Lyra’s daycare who were born the same summer as Lyra are now both walking. I remember when they first began rocking themselves on their hands and knees in preparation for crawling as Lyra does now. It was many months ago. Still, when seated together on the floor, the three babies play together as any group of one-year-olds will. Which is to say mostly parallel play with occasional toy snatching.

Hypotonia Is Everything

Low muscle tone. It is why Lyra does not hit the typical milestones. However, her muscles can be trained and they will get stronger. “The first two years with a Down syndrome baby are a lot of work,” Lyra’s current physical therapist told me and she’s right. As her parents, it is our job to make the work of Lyra’s muscles strategic, so she strengthens the right muscles and learns the best techniques for mobility, grasping, speech and feeding.

Twice a month, Lyra sees a team of therapists at Akron Children’s Hospital. The occupational therapist helps Lyra with her fine motor skills, things such as stacking rings on a stick, placing toys into a container (Lyra mastered getting toys out of containers long ago) and using that oh-so important pincer grip. The speech therapist helps us strengthen and organize Lyra’s mouth, using various tools and techniques, but Lyra is most happy when her speech therapist sings with her. On her last visit, Lyra said “down” repeatedly as her therapist sang “The Itsy-Bitsy Spider” while Lyra followed along, watching the therapist’s face. Lyra held the therapist’s hands, pulling them down with the rain that washed the spider out.

And, of course, Lyra receives physical therapy. We were able to see the ACH physical therapist before there was availability in what they call the “Infant Block” of all three back-to-back therapies. Since she first sat up on June 27, Lyra has made tremendous progress and I credit this progress to what we have learned in physical therapy. We’ve had to repeatedly change our goals for Lyra as she keeps meeting all that we set for her.

Another physical therapist comes to our home about every two months. The State of Ohio funds outreach programs for what they term “medically handicapped children” and with Down syndrome, Lyra qualifies. The benefit of home visits is that county physical therapist looks at the home setting, and can make unique recommendations. For example, last time she was here, she showed me that the tumbling mat that Lyra plays on is perfect, when folded in half, for Lyra to kneel next to with her knees on the ground and her arms on the mat (a variation of the four-point position).

Last year, Lyra worked for many weeks on rolling first from her belly to her back and then the reverse. Today she flips herself over and up whenever she wants, including the middle of a diaper change when it is entirely unhelpful and I have to remind myself of the time spent working with Lyra on her first major mobility acquistion. Eventually Lyra will master all the skills of mobility. And she will talk, feed herself, hold her pencils in a perfect pincer grip as she does her schoolwork. Someday conjuring the time once spent helping Lyra acquire the mastery of her body will be as abstract as remembering the work it took to successfully consolidate two full households into one, also a two-year gambit.

Keeping Calm

All of this intervention, of course, is only helpful if we incorporate it into as much of Lyra’s daily routine as reasonably makes sense. Most of the time I feel like we do a passable job, with some weeks better than others. Oh, sure, we bought a $150 speech kit at the NDSC convention last summer and other than taking out the honey bear cup (which facilitates drinking from a straw) the kit sat unopened and the two-hour video unwatched. For over four months. Recently, I took the kit along to Lyra’s speech therapy session. The speech therapist was delighted to explore the kit with us and showed me which items we should be using and how to use them. And then she asked if she could borrow the video. “Oh, please do!” I told her, thinking somebody should watch it (guilt bomb that it had become) and then maybe I could crib her viewing notes.

And that is how it is, we do what we can, we see steady progress and we let go of the milestones. Or, as I wrote in Fully Human and Needing a Civil Rights Movement, we remind ourselves:

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.

Great, got it. Check. And then we visit the doctors.

“Can she go from belly to sitting on her own yet?” No.

“Does she forward crawl on her hands and knees?” No.

“How about on her belly? Forward belly crawling?” No.

“Can she pick things up with a pincer grasp?” Maybe. Sometimes? I don’t know.

“Does she sing with you?” No. But she loves music!

“Is she cruising furniture?” Definitely not.

“Is she making p/b sounds?” I don’t know!

I know these questions, asked at well-baby pediatric visits and at the Down Syndrome Clinic, help assess Lyra’s skills in order to set goals, but as I answer the litanies, I shrink inside. We have to have goals, I understand. But the line between working towards goals and attempting to speed up the achievement of milestones can seem porous. Even Lyra’s pediatrician, Dr. M, who has a daughter with Ds, will highlight other children with Ds who have hit milestones at early ages, Someone did this, this and this and their child was walking by eighteen months. Well, what if Lyra isn’t? Is she a diminished child? Am I a derelict mother?

Age and Experience

Were Lyra my first child, maybe we would do everything for her that we now do and feel confident in our efforts. More likely, however, I think I’d be a basket case, never feeling like I was adequately working with my daughter and that her entire life’s happiness depended upon my ability to maximize early interventions. Questions about milestones from strangers and even friends might make me feel antagonized.

But Lyra is not my first child. I am older and have raised four reasonably well-adjusted boys. When I was a young mom, I learned something from my homeschooling friends that has served me well: Focus on outcomes. For example, in annual testing, Waldorf educated students don’t score at the same level as public school students, they generally score lower. But by the eighth grade, they generally score higher. Furthermore, Waldorf graduates often approach learning differently than their publicly schooled peers, having come up through a system that teaches the whole child, meaning not only their heads, but also their hearts and bodies, how to learn. The Waldorf pedagogy, which does not aim for testing outcomes grade by grade, seeks and often succeeds in cultivating an inquisitiveness that the students carry on to their subsequent endeavors.

This intense period of training Lyra and her body, strengthening her muscles, developing the correct skills will someday result in it all coming together. She will walk, talk, use utensils and much, much more. Whether this happens at 18 months, 24 months, 36 months, or even longer is not what is relevant. What is relevant is that she will, at her own pace, fully acquire all these skills and more. I know this because raising my boys trained me to trust my parenting instincts.

The Recurring Message

Funny thing, timing. As I worked to finish this essay, another mother of a child with Down syndrome shared this academic article from Britain, which compares responsive teaching to early intervention for children with Down syndrome. Looking at several studies conducted since the 1980s, researchers have found that babies with Down syndrome whose engaged mothers responded to the child’s initiated communication and activities scored higher on developmental testing than did the children whose engaged mothers generally tried to teach their babies something new (the poor babes with unengaged mothers, or ignorers, fared as badly as one would expect). Or put more simply, when the child directs the communication and activity, development is greater than when mom directs the communication and activity. Stop talk, talk, talking and start listen, listen, listening. Instead of “And now today we will learn this or that, little person,” observe your child’s interests and work from there.

Again, this dovetails the Waldorf pedagogy, which was thoroughly developed to meet children where they are with educational instruction. From the outside, a Waldorf education may look like not enough is being done soon enough to give a child the skills necessary to succeed. But as a bee cannot access the pollen of a closed bud, forcing open the blossom of a child’s mind is surely not a healthy path. Responsive communication, meeting children where they are, encourages engagement and, therefore, greater communication. Not surprisingly, this same article highlighting the greater level of success in responsive communication over a top-down early intervention approach in the developmentally disabled population points out that the same results were found in similar studies of typical children.

Our interventions with Lyra, and our the therapists who guide us, apply this approach. When Lyra babbles, we babble the same sounds back to her (she loves this), teaching her words as they naturally arise, such as “more?” and “please” when feeding her. We play with the toys she’s interested in and use them to encourage her movement. We fill small cups with her favorite snacks, which requires her to reach in and pick them up with her fingers rather than raking them up off of her highchair tray. And we do all of this occasionally, some days more than others.

What We See

Lyra pivoting in her high chair and leaning over the side with her attention riveted on Leif, seated next to her in his toddler chair, as he chatters away at the dinner table.

Lyra raising up her arms when we come close, letting us know she wants held.

Lyra taking her pajamas, diaper or whatever clothing she finds on the floor and moving them over her body as though she is trying to dress herself.

Lyra consistently and appropriately using the American Sign Language signs for “please,”  “more,” and “hi.”

Lyra enthralled with every moment of back-to-back Kindermusik classes (hers and Leif’s).

Lyra at the window on the Polar Express waving and saying hi for ten minutes to all the people dressed as elves at the “North Pole” (a.k.a. Peninsula, Ohio).

We see a bright little girl who calls us dada and mama and who is engaged with her brothers, her daycare provider, playmates and anyone else she happens to meet. Regularly, I watch Lyra observing other people in a manner that I can only describe as keen. She takes things in. Will we notice cognitive delays when she is older? Probably. If so, we will support the development of her cognitive skills just as we have her physical development. Our goal is not to get her, or any of our children, a Mensa IQ. Our goal is to raise happy, engaged and productive humans who find value in the lives they lead and who approach the world with curiosity and compassion.

Author Richard Ford once said, “I’ve chosen a life smaller than my ‘talents’ because a smaller life made me happier.” This is not to advocate mediocrity per se, but a higher level of being that takes into account multiple aspects of existence beyond external assessments of accomplishment.

We can only know ourselves through our interactions with others. The proverbial wise man on the mountain may have to confront his hunger, the elements, and certainly boredom. But he will not truly know himself until he is among other people, comparing himself to them and observing his own responses. We compare Lyra to other children from time to time, it’s inevitable. And it helps, me at least, keep a perspective on Lyra’s journey.

Other people compare Lyra too, giving us an added layer of interaction with the rest of humanity. We know this because no matter everywhere we go, people go out of their way to tell us how beautiful she is. They come out from behind counters at shops and gas stations, waitresses who are not tending our table make their way over in restaurants, strangers stop me on the street. This may sound harsh, but I really don’t think Lyra is beautiful, at least not in the conventional sense. Her eyes are small and prominent in her face are the characteristic features of Ds. Each time these unsolicited compliments are paid to Lyra’s beauty (always the adjective beautiful, none other, though if they talk a long while they inevitably also call her adorable), I want to ask if in so saying do they mean I see she has Down syndrome? And are giving some type of encouragement? I don’t know because I’ve never asked. I suppose their intention, regardless of the inspiration, is kindness.

I hope they will feel the same way when Lyra is an adult.

Lyra: Our First Year Together

LyraBeautyShot

Lifespans in Life

The majority of the Down syndrome blogs are written by families whose child diagnosed with Ds is under the age of three. In an online group I belong to, mothers openly wonder why this is the case and what happens to families who have older children with Ds?

I’m pretty sure I know. People move on in life and after three years, having a child with Down syndrome is no longer a novelty. The news of an extra chromosome in a new baby has been digested, how T-21 manifests in an individual child (particularly in terms of any serious medical issues) has been observed and, finally, the remediation for baby’s particular needs has been identified and (ideally) implemented. Baby’s Ds has normalized within his or her family. And just as families do with every baby, whether a child is born with a diagnosis or not, the family resumes dealing with the normal complexities of life.

I’ve seen similar situations many times over. Homebirthers have a hard time detaching from the midwives who’ve just helped them have amazing births. Many of these new moms consider becoming midwives, but only a few do. I’ve known women who, having worked through breastfeeding challenges with their own babies, go on to become La Leche League leaders. But few continue in leadership roles long after their last child weans. When children become school age, some mothers become ardent advocates for particular types of education or homeschooling. But by the time the kids are in middle school, or certainly high school, parents often relax on education. Many homeschoolers start attending school, and children who are privately educated through elementary and middle school frequently attend public high schools. Intensely held positions melt away as the needs of children change. And, too, children find their own paths and must strike out with lessening assistance from their parents.  Life, forever transitory, goes on.

Why I Write

I write because I am a writer. When prevented from writing for any length of time, I have a hard time sleeping because essays clutter my thoughts. When I was pregnant with Lyra, and had no idea the baby I was carrying had three 21st chromosomes, I began writing about my family. Oh, I’ve written about us before, an entire book, in fact. But this time, I began work on a series of essays and had several outlines in mind.

I also process life by writing, which is especially helpful with the harder stuff. My ex-husband, who throughout our marriage had tried to convince me that I was a chronic depressive and should, therefore, be unendingly grateful to have him in my life, told me some months after I left him how he envied my ability to figure things out by writing. Shortly thereafter, he stole my journal off of my computer and presented it to the divorce court as evidence that I was not mentally stable enough to have custody of our children. Leaving that marriage was scary business and, for the first year, I frequently questioned myself. I don’t know if the magistrate handling our divorce ever read my journal, but nothing came of it. Except further validating my decision to divorce.

Yes, writing essays about family became a different project than I had first envisioned because Lyra is a different child than we had anticipated. I write about our experience as we unpack our new lives, which now includes a daughter with Down syndrome and congenital cataracts.

Not Just a Down Syndrome Blog

As I routinely point out, and hopefully demonstrate, Whoopsie Piggle is a collection of essays about my family, of which Lyra, a child with Down syndrome, is one of five siblings. Certainly she is something of the star of the family, but in my experience, the babies in most families are the stars. If Lyra had merely 46 chromosomes would I know now what I do about Ds? No way. This first year with Lyra was like finding myself in a graduate program on Trisomy-21 and all the related medical, social and cultural issues. Writing what we have learned about our daughter, as well as Ds in general, again helps me process my life as it has now been redefined by my fifth child. And by being publicly available, perhaps it might help another mother, and her family, who discovers the baby she is carrying or just birthed has Down syndrome.

However, I have many essays living rent-free in my head like squatters that have little, if anything, to do with Lyra and her 47th chromosome. In the past year, I have written through our learning curve on Down syndrome, along with the medical challenges Lyra has faced. Now, a year after her birth, our family is a boat once again sure of its ballast. Which was also the case when my four older children had their first birthdays.

But before evicting those squatter essays onto the pages of Whoopsie Piggle, it seems appropriate to give Lyra a full blast of the spotlight.

Lyra’s Eyes—More Concerning than Down Syndrome

When I first held Lyra, I immediately noticed her eyes were “Downsy-shaped.” Shortly thereafter, I saw the ghostly pallor of her pupils. At an ophthalmologist’s office three days after her birth, we learned that Lyra had bilateral, congenital cataracts. We were referred to a second, pediatric, ophthalmologist, whom we saw that same day. He immediately scheduled surgical lensectomies for both of Lyra’s eyes.

Hanging around a pediatric ophthalmologist’s office as much as I have in the past year, where the waiting room is often filled with babies born with cataracts, one might easily assume congenital cataracts are common. They are not. Congenital cataracts occur in the United States (and the U.K.) in 3 to 4 out of 10,000 live births. That’s less than .4%, making it pretty rare. Though not considered a marker of Down syndrome, of the infants born with cataracts, the majority of them also have Down syndrome. But even within the Ds population, congenital cataracts are rare, effecting approximately 3% of babies born with Ds in the U.S.

Statistics Versus Reality or When the Number Is Yours

We feel very lucky—providentially, miraculously lucky—that Lyra was spared any of the heart defects commonly found in infants born with Down syndrome. However, for the first two months of her life, all Max and I could focus on were Lyra’s cataracts. Not her Down syndrome and the challenges it might present, but her blind eyes. Her cloudy lenses barred all images; only bright light gained access to her retinas. When she was a few weeks old, Lyra’s eyes started wandering waywardly in their sockets, never in tandem. Bereft of any visual input, the parts of Lyra’s brain that process vision remained unused. Left that way, those parts of her brain would have become effectively obsolete.

Lyra was six and seven weeks old when she had her lensectomies, first on her right eye, and then on her left. More than anything, I was anxious about Lyra having general anesthesia. At eight pounds, she was barely bigger than a bag of sugar. I did not cry when my midwife told me Lyra appeared to have Down syndrome, nor did I cry when genetic testing confirmed the diagnosis. But when a nurse took my six-week-old infant from my arms and walked her down a hallway to the surgical suite, Max and I stood watching until the doors closed. And then I turned into Max’s arms and wept, my sternum burning like I’d just run up a long hill. Please don’t let her die.

Five hours later, we were home where Lyra quickly recuperated. Because everything went so smoothly, the second surgery, exactly a week later, was not nearly as emotional. Soon after her lensectomies, Lyra began wearing specialized contact lenses and, as I described in “Lyra’s Eyes” so too began the bimonthly torture events otherwise known as lens changing appointments. Still too young to understand that contact lenses give her vision and should therefore be tolerated, if not welcomed, Lyra has only improved her fighting techniques. I walk into the exam room with a baby who momentarily transforms into an eel—slick with sweat and strong enough to twist in all directions. Lyra also uses the small openings of her eyes, a Ds marker, as one of her tactics. She shuts them so hard in these appointments that her upper lid sometimes turns inside out. An optical speculum is absolutely required. As are three people.

New Trick

After a year of successful contact wearing, I noticed one day in August that the contact in Lyra’s right eye was missing. We were in the Green Mountains of Vermont (read: far away from specialized pediatric ophthalmologists), where we’d just arrived for a two week vacation. Lyra’s right eye is the one with an elongated pupil, part of her iris having been nicked off during the lensectomy. Without the familiar bubble of an aphakic contact lens, Lyra’s pupil looked different, prettier even, or maybe just more normal, to me. I felt like I was seeing her sighted eye for the first time. With her lenses in, I am reminded of the band director I had my sophomore year of high school who wore glasses with a very strong bifocal correction. His eyes looked odd due to the magnification. When he took off his glasses, usually to rub his temples after trying to teach us a new piece of classical music, he looked normal.

“You know she won’t have to wear these lenses much longer,” said Lyra’s ophthalmologist when we returned home and I told him about the appearance of her lens-less eye. “When her eye is big enough, we can get her into a different lens without that big silicon bubble, I might even be able to fit her in them in the next few months. We’ll see.”

A few days after her missing lens was replaced, Lyra removed the lenses from both her eyes.  Astronomically expensive ($500+/pair), we searched but only found one. As a result we have:

  • Figured out how she takes them out. She puts her third finger in her mouth and her forefinger at the outer corner of her eye and pushes. We now remove her hand from her face whenever we see her doing this.
  • Purchased, as back up, glasses with the tiniest frames and the thickest lenses.
  • Been told by her eye surgeon that the new lenses without the thick silicon bubble are also smaller in diameter and, as a result, will suction more securely onto her eyeballs. He has ordered her first pair.

    Baby glasses with Mama glasses
    Baby glasses with Mama glasses

Seeing Clear and Straight

After her lensectomies and with her aphakic contact lenses, Lyra became a sighted child and her brain has developed as such. She looks towards sounds she hears or at people, animals and toys she wants. Soon after the lensectomies, Lyra’s right eye dominated her left, although both eyes regularly crossed inwardly, towards her nose. We patched the right eye for months, with little impact other than to irritate the skin around her eye.

The medical term for crossed eyes is strabismus and is based on the Greek word for “squint.” I learned this after I described to the surgeon how Lyra sometimes squeezes one eye shut while scrunching up the same side of her face. Many people who see her do this make Popeye references and more than a few have quoted the comic sailor man. I’m afraid we all laugh. Poor kid.

“We aren’t sure why kids with strabismus squint, but the best guess is that it helps them to focus,” Lyra’s eye surgeon told me in June. “I think we’ve done all we can with the patching. I’d like to schedule surgery to correct both of them.”

“Will this improve her vision, I mean, won’t that give her depth perception?” I’d heard from physical therapists that following surgeries for crossed eyes, kids often had big leaps in motor skills and coordination. I assumed this was due depth perception, which doesn’t develop when the eyes do not track in tandem.

“Yeah, well, she’ll have about a 25% chance of developing depth perception,” he said.

“Twenty-five percent? That’s pretty low!”

“I know. It’s only 50% in typical kids, no matter how young we operate. Sometimes it develops and sometimes it doesn’t but it’s half as likely with the Down syndrome. Still, you are going to see a big improvement in her vision. She’ll have a larger field of vision and things will make more sense to her.”

Eye Surgeries 3 & 4

The morning after her first birthday, both of Lyra’s eyes underwent muscle surgery to correct them from crossing. Knowing the operations were much less complicated than her lensectomies had been, I felt relaxed as we checked in at the hospital, visited amiably with the staff, Lyra’s surgeon and the anesthesiologist. But when the surgical nurse came to take Lyra from my arms, my throat felt strangled and once again Max and I held each other while watching a stranger walk down the hallway to the surgery suite with our now fifteen pound baby. Three bags of sugar and general anesthesia.

A few days post-op
A few days post-op

In the recovery room, I sucked my breath in when Lyra opened her eyes. With last year’s lensectomies, we couldn’t see the incisions because they were made on the backside of her eyes. But with the strabismus surgeries, red valleys rippled the once smooth, white surfaces between her nose and irises. The incisions looked like they had been made with a bread knife as the edges were not straight lines, but like the bric-a-brac trim stitched to the edge of Raggedy Ann’s apron.

For more than a week, Lyra’s eyes remained a gruesome sight, however, her vision improved immediately. A month later, Lyra does many things she didn’t do before, which we attribute to better vision. She suddenly developed “separation anxiety” and is no longer content being held by others when her father or I are nearby. She leans in our direction, looks at us and fusses while reaching for us with her arms. When playing on the floor, Lyra now raises her arms for me to pick her up whenever I am close to her. But she also sits for long periods of time playing with toys that are placed within her reach. She reaches farther ever day. And pivots more. Under the tutelage of physical therapists, we are teaching Lyra to go from sitting to lying down and vice versa. Crawling is coming.

When I have my contact lenses in, I can see very well. But if I cross one of my eyes (I can cross each of my eyes independently, impressing even Lyra’s ophthalmologist), where I should see one image I see two overlapping images. It’s terribly confusing, for which is the real item and which is the phantom double? Depth perception or not, seeing straight is certainly an improvement over seeing double.

The other thing, which may sound somewhat inappropriate, is Lyra looks better—the aspect of her face is surprisingly different with her eyes working in tandem. Is that because it is more normal? Perhaps. Do I love her any differently? Of course not.

What, More? More Lyra! At Least a Wee Bit More…

Before her hypothyroidism diagnosis, Lyra’s extremely slow growth rate was very concerning. She gained just two pounds in her first three months of life. So when Lyra had a growth spurt shortly after she began taking Synthroid, everyone was relieved and felt the problem was solved. However, at her 12-month well-baby visit, Lyra weighed 15 pounds even, only one pound more than she had three months earlier. Were she a typical baby, she’d have weighed almost 23 pounds by her first birthday as most babies grow two and a half times their weight in the first year and Lyra was seven pounds, ten ounces at birth.

“She’s slowing down again,” said Lyra’s pediatrician, Dr. M. “Her head measurement is really good, 75 percentile in the Down’s chart, but her height and weight have gone down in percentile since her 9-month visit.”

We talked about it. Lyra is still exclusively breastfed. Like many breastfed babies, my older boys all grew rapidly until they were about six months old. After that, they stopped putting on weight. Still, they also continued to grow in length, like pulled taffy I used to say. Lyra is not. In the end, Dr. M and I decided, well, nothing. As her brain size is not a concern, for now we’ll just keep monitoring the rest of Lyra’s growth.

Poop, Poop, Poop or The Miracle of Fruit-Eze™

WordPress lays an array of statistics in front of my eyes each day. Not only how many views I’ve had, but also the countries where Whoopsie Piggle has been read (over 40 so far, in all continents except Antarctica), and even the search terms used to find the site. Poop, it turns out, is pretty popular. Or, rather, searching for solutions to infant constipation is. Hundreds of hits on WP have been related to this issue.

At the National Down Syndrome Congress convention last July, Max and I attended a session led by the director of the Boston Children’s Hospital Down Syndrome Program on healthcare guidelines for children under the age of five. Constipation merited its own slide in her PowerPoint presentation, as it is such a common problem in the Down syndrome population where even at the cellular level, excretion is not as efficient as it is in the typical population. I once believed the underlying culprit for Lyra’s pernicious constipation was her hypothyroidism. But in a discussion with a scientist at the convention who was studying autoimmune disorders, I was told that even before she began pharmaceutical therapy, Lyra’s thyroid levels would not have caused her constipation. It seems the cause of Lyra’s constipation is simply her Down syndrome.

Given its pervasiveness, I’m surprised that more information is not readily available on how to address constipation without using laxatives. Many people with Down syndrome regularly take a product called Miralax, but it’s not considered safe for long-term use, something the Boston doctor mentioned in her talk. She then went on to tout the benefits of a diet high in fiber and an all-natural product called Fruit-Eze. (Yes, that’s purple and a link. If I could make lights blink around the name like an old-fashioned movie marquis, I would do that, too, I’m just so thrilled with this product.)

As far as I am concerned, that one tip merited all the exhausting travel and expense of attending last summer’s conference in Denver for I am here to sing the testimonial praises of Fruit-Eze. It is nothing more than a sweet jam of prunes, dates and raisins mixed with prune juice. Spread it on toast, mix it in baby food, eat it by the spoonful! Within days of giving Lyra two small spoonfuls in her food, one in the morning and one in the evening, we have been delightfully surprised to find stools in her diaper, sometimes twice daily! And no longer does she announcing their arrival with plaintive cries of pain because the poo is soft.

At $26 + shipping for a 32 ounce jar, Fruit-Eze is pricey, but well worth every penny. It is not at all hyperbole to say that Fruit-Eze has changed our lives.

The New Normal

A family of five children, the oldest is nineteen and the youngest is one. The oldest is off in his second year of college at the University of Michigan, living in a co-op where he cooks dinner once a week for 52 people and is learning how easy it is to cut the fingers of your left hand when chopping so many vegetables while back at home, the youngest complains as she cuts five teeth at once.

Hugo's new squeeze
Hugo’s new squeeze

The second oldest continues to find romance as the primary inspiration for his song writing, which he practices All The Time on the sexy new guitar he purchased with the money he made over the summer at Old Carolina Barbeque, while his sister sits on the carpet next to him, mesmerized by all music, but especially the songs of her brother.

1000965_10152214166733986_85384489_nThe third boy, so long the youngest, officially now the middle child, acts like a firstborn around his younger siblings, caring for them like a mini-me, his sister often found in his arms and most nights while I get dinner on, he feeds her, this boy who, like all mine do at 13, now grows as fast as corn on the white summer nights in Alaska, the fleeting traces of boyhood dissolving as he becomes lantern-jawed and long limbed like his older brothers and, just as they did at 13, this boy has stood up to his father and found, as did they, that there is no room in that relationship for any voices except one and now he must process why his father has abandoned him, too, when all he wanted was to be seen and heard, just like anyone else and it is all so much for a young man/boy but he is resilient, with brothers who guide him down the path they each traveled not long ago.

The last boy is also off to school, going all five days to the Waldorf school and he tells us he loves his sister, he loves her, he loves her and he can’t stop taking her ears in his hands and squeezing them even though we’ve told him so many times to Never Touch Her Ears and even though doing so means his sister can reach his long hair and pull it, which she always does because she loves pulling hair, especially her brother’s hair because he screams when she does and she has him right there in her lap, he doesn’t move lest she pull harder but he screams until someone extricates her fingers from his flaxen locks, which his dada refuses to cut because it is like a golden halo that floats around his face as he runs, runs, runs in the park-like yard, taking his pants down to pee in the grass, throwing dirt in the fish pond, digging in the sandbox, spraying everyone who comes close with the hose and when he falls asleep his muscles lose all tension and his head sweats just like the music brother’s head did when he was a boy, the music brother who announced when the littlest brother was still in the womb that “he will be like me and I shall raise him in my own image and I will call him Leif” and it was so.

Just a Child

I have a friend whose mother is from Japan. My friend once told me she did not hear her mother’s accent, which I thought was quite pronounced. Oh, she knew her mother had an accent. But in daily life, her mother is her mother, not her Japanese mother, whose voice she has listened to since the nautical days of earliest life.

We are always aware that Lyra has Down syndrome. We see it in her eyes and the manner in which she develops. But Lyra is no more our Down syndrome daughter than my friend’s mother is her Japanese mother; she is simply our daughter. Our fifth child. Her brothers’ sister. Who happens to live in the rich milieu that is this family, that is Whoopsie Piggle.

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.