This column was published on Ohio.com on May 6, 2017. One column only scratches the surface on the topic of life with Down syndrome in the United States in 2017. For more articles, videos and profiles of adults with Down syndrome, please refer to my public Facebook page, “Whoopsie Piggle,” or my blog of the same name on WordPress.
Kelsi graduating from Clemson
Mikayla at Bethel
Clayton at UNLV
Luke at Saginaw Valley State University
Two women walk into two separate pediatric medical genetics offices. Both are told by genetics counselors that they are carrying fetuses with Down syndrome and not to expect their children to function beyond the abilities of a 6-year-old child. Ever.
No. This happened in 2017 at University Hospitals and the Cleveland Clinic. No joke.
Every September since our daughter Lyra was born, I’ve spoken to first-year medical students at Case Western Reserve University. Too early into their medical educations to know what medical specialty they will ultimately practice, these students are the ideal audience.
Why? Because health care professionals in all specialties need to hear this: People with Down syndrome are fully human and today lead lives little different than the students themselves.
One day those students may be the gatekeepers for who receives care, or who even exists. Therefore, unlike far too many of today’s health care professionals, they need to give information based not on assumptions or on outdated and false stereotypes, but on facts. After all, medicine is a science, and science is founded on the pursuit of facts.
• In a study in which people with Down syndrome over age 12 were asked to weigh in, “nearly 99 percent of people with DS indicated that they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they look. Nearly 99 percent of people with DS expressed love for their families, and 97 percent liked their brothers and sisters. While 86 percent of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations.”
And what of the families? More facts:
• The incidence of divorce is lower in families with a child who has Down syndrome than in families who have children with other disabilities and, get this, families whose children are all nondisabled, according to the American Association on Intellectual and Developmental Disabilities.
• In a study of older siblings of a person with Down syndrome, 94 percent expressed feelings of pride for their sibling with DS, and 88 percent cited that they are better people for having a sibling with DS. I venture it’d be hard to replicate those numbers among families with just typical children.
The “Down syndrome advantage” is a phrase that has been coined in light of these and many similar studies. And from my own nonscientific research, confessions of a grandchild with DS being their grandparents’ favorite is so common, it’s almost unanimous.
Yes, challenges exist for parents raising a child with Down syndrome. About half of babies born with DS have congenital heart defects, though most are corrected completely with surgery. Also, most children with DS are born with low muscle tone, which not only results in delayed gross motor skills (sitting up, crawling, walking) and fine motor skills (eating with utensils, self-dressing, writing), it also impacts speech. Our daughter Lyra has been in speech therapy most of her life and may well continue throughout her life.
But there has never been a better time to be born with Down syndrome, at least in most parts of the United States and many other countries, though not all.
So why do so many medical providers persist in sharing horridly inaccurate opinions, as opposed to the facts, as shown in scientific research, when delivering a diagnosis of Down syndrome? I believe this is mostly a generational issue. I cannot recall meeting or hearing of a health care professional under age 40 who is negatively biased towards people with DS.
In fact, among women receiving a prenatal diagnosis of Down syndrome, the number who choose to terminate has decreased slightly in recent years, according to a study published in the journal Prenatal Diagnosis. The presumption is that today’s young women, unlike my generation, grew up seeing people with DS on television, as well as knowing people with DS in their schools and communities. Firsthand exposure to people with DS is the antidote to the biased notion that people in this population cannot function beyond the level of a 6-year-old.
The summer Lyra turned 2, we went to a family-friendly party in a sprawling yard. I had a fabulous conversation with a smart and funny woman my age. Nearby, Lyra was hustling about in her newly perfected bear walk.
“She’s so cute, how she crawls on her hands and feet,” said the woman.
“Yeah, it takes them much longer to crawl and walk with Down syndrome.”
“Wait, your daughter has Down syndrome?”
“Oh, yes,” I said.
“You are so much stronger than I could have been,” the woman said and I disagreed with her. “No,” she continued, “I’m telling you that you are stronger than I was. In my late 30s, I was still single and had IVF to get pregnant. When I was pretty far along, they told me the baby had Down syndrome and gave me two days to decide. I couldn’t do it. I would have been alone, I … I didn’t do it.”
“I have no judgment,” I said, knowing this woman made the best decision she could with the information she was given. I then watched the features on her face rearrange themselves, her eyes going from narrowed and intense to wide and open.
“But I see your daughter and,” she paused, “it makes me wonder.”
I gave her my card, but not surprisingly, I never heard from her. In less than two minutes, I watched a woman think she could not possibly have raised a child with Down syndrome to wondering deeply, perhaps painfully, what her life might really have been like with a child who had Down syndrome. All the wonderful possibilities, along with manageable challenges, that her health care professionals neglected to tell her.
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.
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?)
“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.
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.
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.
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.
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.
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.
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.
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
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.
I 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.
“I recently read that all people with Down syndrome develop Alzheimer’s in their forties or fifties, is that true?” I asked the pediatric geneticist as she examined our two-day-old baby. A few months earlier, I had read a Newsweek cover story about the care of adult children with developmental disabilities. The sentence about Alzheimer’s had leapt out at me even though I had been told there was little reason to suspect the baby I was carrying had Down syndrome or any other medical concerns. When she was born, however, she had several Ds markers—upslanted eyes, a tongue that darted out of her mouth, and sandal toes (her big toes are far from her little toes, almost as though they were attached as an afterthought). Even before we went to the lab to have her blood drawn, we understood that the genetic testing would only to confirm what we already knew. We had known it in our hearts since I had commented, moments after her birth, that Lyra’s eyes looked “kinda Downsy.”
“You know,” said the geneticist, “it’s really hard to predict what you can expect, what with all the therapies they have developed, things have changed so much in the last twenty years for children with Down’s.” That sentence stuck in my head even while the first few weeks of Lyra’s life found us submerged by what having a child with Down syndrome can mean, including finding resources to help us learn what we could about our daughter’s condition and, of course, dealing with her cataracts and eye surgeries. All the while, the geneticist’s words whispered repeatedly in my mind, with all the therapies they have developed.
The remarkable increase in life expectancy in recent decades was one of the first facts we learned about Down syndrome and it highlights the dramatic improvement in the research, care, and therefore, quality of life for a person born with Ds today. In 1985, shortly after Max and I graduated from high school, the life expectancy for a person born with Ds was just 25. Today it is 60 and that number is expected to continue increasing as modern medical research also continues to advance the understanding and amelioration of Ds. Not only are people with Ds living longer, they are living vastly different lives than they would have half a century ago. In fact, as the National Down Syndrome Congress has shown with their “More Alike Than Different” campaign, today most people with Ds can expect to lead rather, well, “typical” lives.
Why Are Things So Different?
Until the 1960s, most children born with Down syndrome were institutionalized. When I was growing up, it was rare to see someone with Ds. I never had a classmate with Ds nor do I recall any special classrooms for children with Ds in any of the schools I attended. And I am not aware of any families who had children with Ds, which doesn’t mean that they didn’t exist, but those that did were perhaps institutionalized and not discussed.
Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in1964, a study was conducted comparing infants with Ds who were institutionalized to a group that were home raised. The study continued until the children were eight years old and found that children with Ds who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.”
It was not until the 1970s that the two major U.S. organizations that advocate for people with Down syndrome, the National Down Syndrome Congress (1973) and the National Down Syndrome Society (1979), were created. Both organizations make clear that caregivers—parents, teachers, friends and extended family—should set the bar high for kids with Ds. Children with Ds most often meet and regularly exceed the goals set before them. The myths on what people with Ds are like and capable of have been falling like scales from our eyes and today there is every reason to expect a baby born with Ds to have a full and productive life, including mainstream schooling, college, independent living, careers, even marriage and (what surprised me the most) driving automobiles. All of which indicates that as a society, we were operating on grossly false assumptions for many decades, tragically so for children born with Ds prior to the 1970s.
Not So Pretty
In the mid-1980s, my father and stepmother worked in a group home for adults with developmental disabilities, including some with Down syndrome. Across the nation, long-standing institutions that had housed people with developmental and physical disabilities were closing and group homes were opening to meet the need to care for many of these people. My parents worked in a freshly constructed ranch-style home, built to house eight residents. In the center of the ADA accessible house was a kitchen and living room, and on both sides of these common areas were four bedrooms, one for each resident.
I was eighteen in the spring of 1984 when I took a Greyhound bus from Tucson, where I was living with my grandma, to Northern Michigan. I had not visited my family since leaving two summers earlier. When my father picked me up at the bus station in Traverse City, the hour long ride to the house was awkwardly filled with fits and starts of conversation. We had not yet talked about why, after living with him and his family my junior year of high school, I had decided to return to Ohio and live with my mother for my senior year. And we never did. Instead, we talked about my half-sisters and other people we both knew. Eventually my dad began telling me about the job working at the group home and we both relaxed. My dad felt like he had finally found his career calling and with his eyes cast on the road ahead of us, he effortlessly described his work, the words pouring like water from a full pitcher.
The day after I arrived, my dad took me to the group home to meet the people he worked with. Many of the residents were in wheelchairs and most were overweight. When my father talked with the residents, introducing me to each of them, I could not understand what they were saying. I tried to be friendly, but the truth was, I couldn’t wait to leave. I didn’t see people, I saw drool and adult diapers.
“How do you work with those people every day?” I asked my dad when he got home, “Isn’t it depressing?” Which was a fair question. Depression was like a card my dad carried to excuse himself for his significant inactions, especially as they related to those of us who, from time to time, would reasonably wish to lean on him. People like his wives and children. Then again, I ask myself, who among us has not risen to his or her better self with strangers while our seamier aspects are saved only for those who know us best?
“You know, Hol,” he told me, “if you got a job there, after a week you would no longer notice the disabilities of the residents. They’d just be the people you worked with, just like anywhere else.”
“But they aren’t like the people anywhere else,” I said.
“Actually, they are. You would soon know them as Jim or Bob,” he said naming a few of the residents at the group home. “You’d know what they like and how they’re doing, just like you would with anyone in any job. And really, Hol, you’d no longer see their disabilities, you’d just see them as the people they are.”
Let me stop and say that I am not upset with the younger me who, the first time I was introduced to severely disabled adults, recoiled. At the same time, my chest physically aches to think that anyone would feel similarly about my daughter when she is grown. My ignorance was ugly, but I did not remain ignorant.
As with many things, education builds awareness, exposure builds understanding.
My father worked at the group home until he moved to Arizona in the early 1990s, where he also worked with adults with developmental disabilities. Over the years, I came to feel I knew some of the people he worked with because of the stories he shared. Many had spent their entire lives in institutions, which was at the root of some of their more difficult behaviors. For instance, both my parents told me they worked to get the group home residents to eat their meals slowly and not scarf their food without swallowing. In the institutions, residents were fed in large cafeterias with little oversight and many had learned to eat as fast as possible in order to prevent anyone from stealing their food. Back then, eating at a table in the group home was often a resident’s first experience in family style dining with no threat of bullying.
My dad became particularly close to one of his clients in Michigan. A quadriplegic, Jim found work typing out address labels (this was before computers were ubiquitous). My father jerry-rigged a helmet by affixing the writing end of a pencil above the center edge of the helmet’s brim. With the helmet strapped firmly under his chin, Jim’s head bobbed over an electric typewriter as he used the pencil’s eraser to type out names and addresses on sheets of labels. Jim used the money he earned typing labels to buy gifts for his girlfriend. She lived in a different group home and Jim saw her on weekdays at the adult day care facility they both went to. Like Jim, his girlfriend was in a wheelchair. But on more than one occasion, the two of them somehow managed to get their shoes and socks off and were found sitting away from any activity, their bare feet entangled.
One evening when I was living in Boston, my dad called me from Arizona. In 1995, before cell phones found their way into everyone’s pockets, long distance calls were expensive and, thus, infrequent. Claude was a year old and I’d long gotten over my squeamishness of body fluids. Beyond diapers, I’d thought nothing of holding my baby as he repeatedly vomited on me a few days before his first birthday. Comforting my child trumped the sour smell of puke. Sure, he was a baby, my baby even. But nothing could have made me love him any less than I did including, as I discovered a few years later, a learning disability.
“My friend Jim died,” said my dad when he called. It was the closest I’ve come to hearing my dad cry. Maybe he was crying. I didn’t ask.
“Who’s Jim?” I asked instead and he reminded me of the resident in the Michigan group home. Once he’d moved to Arizona, my dad came home only a couple of times for important events like weddings. When he did, he always went over to the group home where he’d worked to visit Jim. My dad did not learn about Jim’s death until weeks after his funeral, but even if he had learned immediately, he would not have been to leave work and travel so far on short notice. Sitting in my kitchen in Boston, I listened to my father as he talked about his friend at length, a telephonic memorial service of two.
Those Therapies They Have Developed
One of the common issues that nearly all children with Down syndrome face is hypotonia, or low muscle tone. It can cause them to have trouble eating, speaking, learning to sit up, crawl, walk and run. (For more on the challenges facing babies with Ds, consider clicking the link for this well-written post from the blog, “Noah’s Dad.”
As expected, Lyra does have hypotonia, but I believe it is only mild to moderate. She does not spring with wirey muscles like my boys did when they were infants and babies, but neither was Lyra ever a “limp noodle” as so many babies with Ds are described. When she was four months old, I began taking Lyra to both speech and physical therapy at an office recommended by our pediatrician, Dr. M.
Physical Therapy or Breaking It Down to Pull It Together
When my dyslexic sons, Claude and Jules, learned to read, we had to break down the cognitive understanding of sounds and symbols. With Jules, I had to spend months making up silly rhymes and alliterative phrases so that he could hear the similar sounds. Once letters and their sounds were memorized, all combinations had to be taught. And because the English language is comprised as much of exceptions as it is rules, countless “sight words,” or words that don’t follow the rules, had to be memorized too.
So it is teaching Lyra to move her body through space—something I took entirely for granted with my four previous children. The first thing Lyra’s physical therapist, Heather, showed me was to pull Lyra up into a seated position by her wrists. Lifting Lyra slowly, her neck muscles engage and get a work out. By the time she was five months old, she was not only holding her head on her own but she keeping it upright as we bounced her on an exercise ball. Yes, the exercise ball is a big part of her PT, which for now has the overarching goal of getting Lyra to sit up and crawl. Lyra gets a better abdominal and arm work out each day than I do (though my muffin top and bat wings tell me I need to correct that).
Little things feel like milestones. Things like Lyra jumping in her bouncy seat, her head held erect as she springs her body up and down, or rolling on the floor from her back to her tummy and over again onto her back, or purposefully reaching her hands and arms towards a toy she wants, or sitting upright in the middle of our laps where we can catch her when she lists. Lately, Lyra’s been bearing weight on her hands and arms when she is on her tummy, a sure sign that crawling is coming. We want Lyra to crawl, and crawl for a long time, not only so she can move herself to where she wants to go, but also because of the well-documented, kinesthetic brain development that crawling enhances.
Speech Therapy or Everything to Do with the Mouth, Including Eating
For two months, Lyra’s speech therapist helped us try to teach Lyra to take a bottle. When she was nearly six months old, we all gave up. This is the first of what I suspect will be a lifetime of wondering whether something about Lyra is simply her personality or her Down syndrome. With the bottle, I believe it is personality. She breast feeds like a champ, which requires more muscle strength than bottle feeding. However, the time spent with the speech therapist was not invaluable as we learned many mouth exercises that we continue to practice. These exercises, mostly mouth massage—both inside and out—have helped Lyra “organize” her mouth. As a result, her tongue thrusting has greatly reduced and she has had no trouble learning to eat solid foods from a spoon.
Later this month, we will revisit the speech therapist to evaluate Lyra’s speech. But at nine months old she has long blown raspberries, babbles what sounds like the cadences of a distance conversation and then, as if providing commentary on the speech of those around her, will say, “Blah, blah, blah.” These are all very good signs for speech development.
My Head and My Heart
When I hold my baby girl, I do not see her Down syndrome, I see my daughter. We all adore her and love to make her laugh, but she is mostly like any other baby. Jules delights in walking his fingers up Lyra’s sides to her armpits to get her to belly laugh. Leif holds Lyra’s hand and jumps with her as she hops up and down in her bouncy seat. All too often when they are playing on the floor, Lyra manages to grab a fistful of Leif’s long hair and pull it with all her might, causing her brother to scream in pain. The big boys send Max and me on dates, willingly keeping both of their younger siblings, caring for them with a naturalness that belies experience.
But here is a true confession that makes me cringe: I am still a work in progress. I know in my head that when she is older I will see and love Lyra as I do now. Maybe she will be as accomplished and “mainstreamed” as the adults with Ds in the “More Alike Than Different” video. But maybe she won’t.
I recently saw a lovely child with Ds, who was perhaps nine-years-old, happily engaging other people, especially little children. But when she spoke, I could not understand her and in that moment, and I felt the scabs peel off of my heart to reveal how attached I am to speech. I had to take Lyra to a corner of the room and nurse her while I quietly wept. I looked down on her dainty round head and, wondering if she’d ever speak clearly, I felt smacked by what is not alike, but different, about my child with Down syndrome.
A few moments later, a young mother whose son is only weeks older than Lyra came and sat by me. She has a soft voice with a southern accent I cannot place, but which calmly drew me out of my sorrow. She told me her child could not keep food down because of reflux and he was chronically ill because, as they had recently discovered in a swallow study, he aspirates his liquids. A first time mom, this woman’s dedication to her child is both fierce and gentle. Knowing how overwhelmed I was with my firstborn, who had no physical challenges whatsoever, this woman’s tender acceptance of her child and his mighty challenges guided me back to my center and I stopped leaning into my fears of the unknowable future.
We are a very verbal and literary family and we all enjoy talking, reading and writing. Two of us have made careers out of it and Claude may well too. My head tells me that Lyra will communicate effectively because she already does. She is not shy and her desire to interact with other people will propel her abilities to speak and/or sign (just as my own extroverted nature helped me learn French when I was a student in France). As her life unfolds, my heart will catch up with my head and I will continue to see my daughter as the person she is, not the extra chromosome she has.
What gets me into trouble is forgetting to stay in the moment.
“Is there a vagina?” I immediately asked the midwife.
After a summer of crop-killing drought, it rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning and opened our windows and a soft breeze cleared out the re-circulated air. Sitting on my side of the bed, I looked out the screen door to our veranda while I waited for each contraction, watching the soft rain, breathing in the fragrant storm. When I began to push, just a couple of hours after hard labor had begun, the storm seemed to move with me. Still falling in straight lines, the rain grew heavy and splattered noisily on the heat-hardened ground. Fifteen minutes later the baby emerged, the rain stopped and, as unbelievable as it sounds, the clouds parted just enough for a shaft of sunlight to settle onto the soaked lawn.
My fifth child is my first daughter. Or so the doctors had told me during a level II ultrasound eighteen weeks into my pregnancy. But reading an ultrasound is a subjective art and there are no guarantees of the analysis. We knew this.
Because I was 46, I underwent many prenatal tests while expecting my last child. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and beautiful is better than good. Having decided we would not terminate a pregnancy if the fetus had Down syndrome, my partner and I passed on an amniocentesis. More importantly, I felt certain I would lose the baby if I had an amnio. Like me, my grandma, who mothered me unlike anyone else, had four boys. Her only daughter died at birth because of the Rh blood factor. Grandma had negative blood and, like her first child, her baby girl’s blood was positive. At the birth of her first child, a boy, Grandma’s blood created antibodies against his positive blood type, which remained in her body and, later, killed her daughter. I, too, have negative blood and my daughter’s is positive, but since the 1970s there has been a remedy for this. After each of my babies’ births, I was given a RhoGam shot that prevented my body from building antibodies to positive blood.
Grandma kept trying for a daughter, even when my grandfather did not agree, but she only had boys. When I learned my fifth child was female, I believed an amniocentesis would cause me to lose my baby just as the Rh factor took Grandma’s daughter. It isn’t logical, I understand, but I felt very strongly about this connection. I still do.
Bluish and slippery when the midwife handed her to me, the baby screamed long and loudly. Her eyes remained closed as I began nursing her. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect. When she finally opened her eyes, I mentioned that they looked “Downsy.” Then I saw the bulk of skin on the back of her neck, and then the ghostly pallor of her pupils. I mentioned these things to the midwife, who had listened to Lyra’s heart the moment she was born, and she told us she’d fully examine the baby in a bit, to just hold her for a while. In the middle of our bed, Lyra’s father and one of her brothers huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.
My daughter has Down syndrome. And, when she was born, she was blind. The murky white of her pupils, the color of breast milk in a glass bottle, was due to bi-lateral cataracts. Leaving me to revisit what I thought I desired in a daughter, what it is to have Down syndrome and, ultimately, what it means to be fully human.
The first weeks of Lyra’s life whirled past us as we dashed to one appointment after another, first verifying her Down syndrome (DS), that she had no life threatening conditions (as can often be the case with babies with DS), and, most urgently, taking care of the cataracts in her eyes. Once her eyes were surgically cleared, we had an impending presidential election to absorb so much of our attention—along with daily life in a family of seven.
We made ourselves busy. Too busy to really take in what it means to have a child with Down syndrome. Too busy to spend time with uncomfortable questions as they slither up from the cracks of my mind. On the day Lyra was born, the midwife wisely counseled us to stay off of the computer for a while, to just spend time with our daughter. But just as important was to find support and accurate information as to what a diagnosis of Down syndrome means today in the United States.
I wish I had worried less about who my daughter would become and enjoyed the baby she was. ~ a mother, quoted in Babies with Down Syndrome
The test for Down syndrome is a yes-no test. Your child either has an extra 21st chromosome or she doesn’t and the results are back in as early as 48 hours. Lyra was born at home on a Tuesday. On Friday, we received the call confirming her diagnosis. But no test can tell you the severity of your child’s Down syndrome. You just have to wait and see.
There are, however, varieties of Down syndrome, including something called Mosaic Down syndrome in which not all of the cells contain the extra 21st chromosome. To learn what type of DS a child has requires a karyotype test, for which it takes many weeks to receive the results. Even though about 95% of children with DS have Nondisjunction Trisomy 21, or an extra chromosome in all of their cells, for nearly three months, I held on to the odds that Lyra was one of the 5% with Mosaic DS. She has few markers, I reasoned with myself, she’s developing beautifully and while there are no guarantees that a child with Mosaic DS will have milder symptoms, fewer medical problems or an easier life, I wanted it to be so. I wanted it because maybe, just maybe, Lyra would have fewer struggles. And, yes, be more typical.
Which is just magical thinking.
In a healthy mind, magical thinking can help us cope with something very difficult. In 2005, Joan Didion published her memoir, The Year of Magical Thinking, about her life in the months after her husband died suddenly of a heart attack. In essence the first three stages of grief on the Kübler-Ross model—denial, anger, and bargaining—all represent an element of magical thinking. The last two of the five stages, depression and acceptance, strike me as the points at which reality sets in.
Did we grieve because Lyra has Down syndrome? I know I did. But not all the time. Max immediately saw her as perfect and has continued to do so. The constant refrain from all of her brothers was and is, She’s so dang cute! Mostly, I enjoyed her for the baby she was, sweet and easy to hold, but I cannot help but wonder, as a child and adult, who she will become. At three months old, she only weighed 9lbs. 12 oz., which is less than two of my boys weighed at birth. She didn’t hold her head up as well as they did at three months due to hypotonia, or low muscle tone, which is a common characteristic of Down syndrome. But she remained in the range of normal development, even when compared to a typically developing baby her entire first year.
I have heard many people with Down syndrome children speak of uncanny coincidences, odd and, yes, magical things that occur with and around their children. Martha Beck wrote an entire book on it, Expecting Adam. When word got out that Lyra has DS, many friends recommended the book and one gave me a copy. Beck and her husband were in PhD programs at Harvard when they discovered they were pregnant with their son Adam, who has Down syndrome. Odd things happen throughout the pregnancy that Beck ultimately decides are very spiritual in nature, perhaps the work of angels or other spiritual beings.
On a warm day in late October when I had just finished reading Expecting Adam, I was overwhelmed with my day’s schedule, our clutter-filled house, the children needing to be reminded of things like, shut the door when you come in. Where are my angels? I have a child with Down syndrome too! I thought petulantly. That evening, I took two-month-old Lyra and went to a Down syndrome support group meeting, leaving my two-year-old son, Leif at home with his older brothers. As soon as I pulled into the parking lot where the meeting was held, my son Hugo called me.
“I don’t know what happened,” he said, fear in his voice.
“What?” I asked.
“Well, I was in the living room and Jules was in the kitchen,” he said.
“Yeah, so?” I asked.
“Leif had been in the basement, at least I thought he was in the basement, watching a movie,” Hugo continued.
“Okay, what is it?” I asked holding my cell phone ever tighter in my right hand.
“Well, I don’t know exactly what happened,” said Hugo and I wanted him shake him.
“What the hell happened?” I yelled.
“You don’t have to yell!” Hugo snapped back. “Leif must have gone out back through the porch and, uh, somehow the gate wasn’t locked because, well, this lady came to the door with Leif. She said he was on the street.”
We live on the busiest street in a small city. There are four lanes of traffic in front of our house. Across the street is a large church that has a playground where we often take Leif. A few days later, I learned the entire story. Leif had started to cross the street with no regard to traffic. A woman driving down the street saw a man, who was walking on the sidewalk, stop and pull Leif back onto the sidewalk. And then the man continued on his way. When the woman in her car saw that Leif didn’t belong to the man who’d pulled him to safety, she parked her car, got out, and went up to our little boy. She asked him where he lived and brought him home. Later, the woman told a friend the story. The friend knows us and called me.
I read the paper every day. Bad things happen all the time. Two strangers likely saved my son’s life. Was it the work of angels? Fate? Or mere coincidence? I can’t say. But I hung up the phone and thought of my earlier complaint. “I’m sorry, I take it all back! We’re good! Thank you!” I said outloud.
Max and I both believed we could have a child with special needs if we were audacious enough to try for a second baby together. At least, we occasionally mentioned it to each other in the year after we had Leif, who was born without any diagnoses when we were 44 years old. I wondered if trying again was hubristic, was I daring the gods, did I think I was somehow superior to the odds of having a baby with an extra chromosome, which were high? No, I did not. In fact, I quietly believed the odds were more than high. I believed they were certain.
Clearly many would see this as an unacceptable outcome because more than half the women in the U.S. who learn they are carrying a fetus with Down syndrome elect to terminate the pregnancy. Others, like Martha Beck, may see having a child with Ds as a gift, a reward for parents who might feel chosen by a higher power. To me, it’s neither.
As with all my children before I conceived them, I felt that there was a child out there, the last one, waiting to come to our family, and that it was my girl. Max would also on occasion say things like, “It would be nice for Leif to have a sibling close to his age; he’ll be so young when Jules goes off to college.”
And so, when Leif was just two months shy of his second birthday, we bought an ovulation kit and Lyra was conceived the first month we used it. On Thanksgiving Day.
But What Can We Expect?
On Lyra’s second day of life, we had a long discussion with a genetic therapist. She took her time with us as we began to learn that the expectations for children with Down syndrome are radically different than they were when we were growing up. For example, consider this fact: When I graduated from high school in 1983, the life expectancy for someone with DS was 25. Now it is 60 and increasing.
Today, children with Down syndrome benefit from early interventions including speech, physical and occupational therapies. There are highly organized support groups nationwide including, in Northeast Ohio, The Upside of Downs, a group who has been tremendously helpful to us from the moment we first contacted them. There are also national organizations including the National Down Syndrome Congress whose video, “More Alike than Different,” explodes old notions of what adults with DS are like and what they can do. As does the documentary movie, Monica and David, about a married couple, who both have DS.
The success stories are encouraging and truly heart warming—I easily become weepy watching them. But like buying a new car and suddenly seeing everywhere the same car, in the same color, it now seems that I see children and adults with Down syndrome all the time, not just at functions for families in the DS community, but as I am out in daily life. And clearly not all of them function as highly as the young people in the aforementioned videos.
The truth is none of us know what our journey will be with any of our children, whether or not they have Down syndrome. I have two sons with severe dyslexia who have required significant interventions. I have one son who turns to gold anything he sets his mind to—academics, sports, music, visual art. And it is that son who regularly commandeers immense amounts of my parenting time, attention and certainly energy. I could not have predicted any of these journeys with my oldest three sons when they were babies in my arms. I love none of them any more or any less for who they have become. Rather, much of the joy in having a large family is getting to watch both how similar and how different each child is from the others.
With Lyra we are immediately aware that we have a unique journey. There is a helpful analogy often told in the Down’s community about giving birth to a baby with Down syndrome. It’s as though you were preparing for a trip to Italy—you found your dates, purchased the items you thought you needed. Perhaps you’ve been to Italy before and are looking forward to returning. Or maybe it is your first time, but friends of yours who have been to Italy before tell you what to expect, how to plan for your trip. The big day comes, you board a plane and make the long, tiring flight to Italy. But when you disembark, you find yourself in Holland.
We arrived in Holland with Lyra, because we quickly knew she had Down syndrome. And like customs officials at international airports, in the first year of her life, we met with an onslaught of medical officials as we worked to make sense of where we were. Even after more than a year of familiarizing ourselves with our situation, we don’t yet know on which roads our journey with Lyra will take us or what cities we will end up in. Only as she grows, and we learn how having that extra chromosome specifically affects Lyra, will we be given our unique map to follow in this territory that in one short year was no longer felt foreign.