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unlike far too many of today’s health care professionals, they need to give information based not on assumptions or on outdated and false stereotypes, but on facts.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.
After a summer of crop-killing drought, rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning, 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 exam 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 that 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. Furthermore I believed, whether intuitively or superstitiously, I would lose the baby if I had an amnio. That’s because my grandma, who mothered me unlike anyone else, had four boys because her only daughter died at birth. Grandma had a negative blood type and the blood of her baby girl, her second child, was positive. At the birth of her first child, Grandma’s blood had created antibodies against his positive blood type, which remained in her body and later killed her daughter. Since the 1970s there has been a remedy for this. After each of my babies’ births, for I too have negative blood, 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 only boys came. 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.” I saw a 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 bi-lateral cataracts. All of which left 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 days of Lyra’s life were filled with appointments: pediatricians, a geneticist, a genetics counselor, two ophthalmologists, and several lab technicians. I did not cry when Lyra’s diagnoses of Down syndrome and cataracts were explained to us, her father and I just pragmatically, if not numbly, proceeded with what we needed to do for our infant. On the weekend after Lyra’s birth, we finally stayed home. Our midwife came to check on us and during her visit my partner drolly mentioned that he had to change all the diapers while I just lazed about. After she left, I told him how embarrassed his stupid diaper joke had made me feel, how I could not believe after a week of traipsing from one specialist to another when I had just given birth that he would call me lazy, even in jest. Anger suffused with pain until hot tears rolled down my face when my rational brain stopped driving my mouth, “And I don’t even have a daughter who will want to do the things mothers and daughters do, like, like go shopping! And what about a wedding? And all those things, school, books, what will we have?”
Right then, just days after her birth, I did not know how having Down syndrome would affect Lyra and nobody could tell me because people with Down syndrome have a wide range of abilities. But only after my bubble of grief had popped open and spilled all over our bedroom could I look at the contents. First of all, what were all these sexist stereotypes I suddenly felt were taken from me? I don’t even like shopping. I’m what I call a “surgical shopper,” I’m in and out, zip-zap, going to the same stores where I know things fit my family. The idea of spending a day shopping makes me glaze over with catatonia. Why did I care about a wedding? I never thought about weddings when my four sons were born. That episode in our bedroom was the first of many installments in which I would question whether I felt a certain way or, later, if Lyra behaved a certain way because (unlike all my other children) she is a girl or because (unlike all my other children) she has Down syndrome. If Lyra had 46 chromosomes, would I have thought, shortly after her birth, about shopping and a wedding? I will never know.
What I do know is that with each newborn a family is reinvented and there is a period of adjustment for all its members. First, a couple becomes parents of an only child. If they carry on and have a second child, the family has an adult to child ratio of 1:1. Should they continue further and have three or more children, the parents are outnumbered and in a whole different league of parenting. Also, with each baby the sibling order is reconfigured. But as both our first girl and a child with multiple diagnoses, I questioned things with Lyra that I had not encountered with my previous newborns. How would having an extra chromosome affect her? How could we make sure any disadvantages or discrimination Lyra might face, as a woman with Down syndrome, not be compounded by the limitations of her vision? The truth is, we have no way of predicting the long-term significance of Down syndrome or bi-lateral cataracts on Lyra’s abilities. In some ways, that has been more unnerving than the diagnoses themselves, a sentiment echoed in one of the first books I read on Down syndrome in which a mother of an older child writes, “I wish I had worried less about who my daughter would become and enjoyed the baby she was.”
Our first two years with Lyra were as though I woke up to find myself unexpectedly enrolled in a graduate program on Down syndrome and, to a lesser degree, vision impairment. Lyra’s father and I have read (often not the same) many books, articles, and blogs on Down syndrome. We began attending different meetings of local support groups, as well as the annual conventions of the National Down Syndrome Congress, conventions that function much like academic conferences. But as a writer, I process life by writing. So, when Lyra was three months old, I began a blog about our entire family, with Lyra as the inevitable focus of most essays. There are now more than fifty of these essays and when I read back I see not just a record of Lyra’s first years, but also my own evolution in understanding Down syndrome.
In one of the first essays, I describe learning about Lyra’s diagnoses and, while we loved her immediately and perhaps with even more ferocity than with our other children, feeling unsettled about how her diagnoses, especially her Down syndrome, would manifest. Months later, I re-read that essay and cringed at two terms I had used, one of which I promptly removed. It was the word “healthy,” which I had used to describe what I had wanted my daughter, in fact all my children, to be. Webster’s defines healthy as “enjoying health and vigor,” with “ill” as the antonym. Webster’s also defines health as “the condition of being sound in body,” with the antonym of “illness.” It is true that anywhere from 40% to 60% of children born with Down syndrome also have heart disease, ranging from holes that close on their own to multiple, severe defects, and we have known far too many children Lyra’s age who have died in their third year of life due to heart conditions. But most children with Down syndrome who have heart disease do not die and instead their hearts are permanently repaired either naturally or surgically. Fortunately for us, the pediatric cardiologist who performed Lyra’s fetal echocardiogram was correct: Lyra’s heart is beautiful and beautiful is better than good. She had a post-natal echocardiogram that once again revealed a perfectly healthy heart.
The other term I cringed at, but left in that early essay, was “milder symptoms,” which I had used to describe what I wished for Lyra. “Milder symptoms” is a legacy of the terms “mildly retarded” and “severely retarded,” both of which were commonly used to discuss people with Down syndrome when I was growing up in the 1970s. Rather than remove the words “milder symptoms” I left them as an example, which I discuss in a separate essay, of how the language regarding Down syndrome has changed rapidly in my lifetime, paralleling all the other changes surrounding the housing, health care, education and integration of people with Down syndrome. In the past twenty years, the word “retarded” has been deemed derogatory in any context. The same needs to happen to the words milder/mildly and severe/severely, comparative words that are routinely assigned to the symptoms of illness including fever, pain, nausea, and rashes (just look to the previous paragraph for an example). They are also used to describe outbreaks such as the annual flu and epidemics of disease. But having a mild or severe case of an extra chromosome is akin to having a mild or severe case of pregnancy. You either do or you don’t; you either are or you aren’t. There is no degree of Down syndrome, just a wide range of abilities exhibited by people with three twenty-first chromosomes. And really, how is that any different than the wide range of abilities exhibited in the population with two twenty-first chromosomes, i.e., “typical” people?
Yes, my daughter has an extra twenty-first chromosome, which certainly has causal impact on who she is, but my daughter is not ill; she is one of the most robustly healthy children I know. At two-and-a-half years of age, Lyra had never needed antibiotics, never had an ear infection, though she had contracted a reasonable number of snotty-nosed colds. She eats, sleeps and energetically plays. When left to her own devices for even a minute, Lyra gets into cupboards, the dog water bowl and, her personal favorite, the bag of paper to be recycled. Just like any toddler. Furthermore, the Ohio government does not consider Down syndrome to be an illness. Since birth, Lyra has had six eye operations (three on each eye). She wears highly specialized contact lenses (charitably made by Bausch + Lomb who make no profit on her rare lenses) for aphakia, or eyes without natural lenses. Her natural lenses were removed when she was six weeks old to eliminate the cataracts and allow her brain to develop as a sighted person. She sees an ophthalmologist on a regular basis and presumably will do so for the entirety of her life. The Ohio Bureau of Children with Medical Handicaps (BCMH) has helped us with the costs related to Lyra’s vision, but they do not cover any expenses related to Lyra’s Down syndrome specifically because it is a condition that can be remediated with interventions. While I can argue that it is in the state’s best interest to insure that early interventions for children Down syndrome, including physical, occupational and speech therapies, occur regularly and with accredited providers, the state has categorized Down syndrome as a disability, not an illness. While they do provide modest, at-home interventions in the first three years of a child’s life, the state primarily uses the public school system to provide services to children with Down syndrome up to the age of twenty-two.
Re-reading what I wrote two years ago, I see the subtle belief I held that Down syndrome was in essence a form of illness, a false belief that is pervasively held. While undeniably used to withhold the status of full humanity to both men and women, the false application of illness has a particularly misogynistic history. Certainly as far back as the Victorian era, illness has been used to depict an idealized form of an adult female. The consumptive woman with luminously pale skin shown reclining, her limp body nearly lifeless, was a mainstay of fin de siècle art and literature. How better to deny full humanity to half of the population than to enlist its complicity to behave as wan and powerless beings in order to attract the other, dominate, half of the population? Nor did that misogynistic cultural norm disappear as each and every wave of feminism washed over society. Like racism, today misogyny is often hidden from open conversation and behavior, only to be expressed in subtler ways. Seeing Lyra’s full humanity requires overcoming not just perceived medical limitations, but deeply rooted social and cultural perceptions too.
If Lyra is not ill, what is she? In the past two generations, children with Down syndrome are experiencing previously unknown levels of intervention, education and rich social lives. This has resulted in an explosion of new statistics. One of the most dramatic is that life expectancy has increased in the past thirty years from 25 to 61 (and continues to rise). Meanwhile, life for people with Down syndrome is radically different than it was in the 1970s. Today, children with Down syndrome go to school, graduate, and some continue on to college or other post-secondary programs. Many adults with Down syndrome are successfully employed, an ever-increasing number are getting married and even, the most surprising to me, driving cars. Living independently as an adult with Down syndrome is now the norm, not the exception.
So are people with Down syndrome different from the rest of us with just 46 chromosomes? Yes, and no. What I have observed in my own child, who is two-and-a-half years old at this writing, is her development is delayed, but in consistent measure. Due to hypotonia, or low muscle tone, a hallmark condition of Down syndrome that is entirely unrelated to cognitive function, Lyra first sat up when she was ten months old. Her brothers all sat up at about six months. She also crawled, and later walked, when she was a year older than her brothers when they achieved these milestones. Hypotonia can also affect the muscles of the mouth. Not unlike trying to speak after being shot up with Novocain, so too can the speech of some people with Down syndrome be harder to understand. And because people commonly assume that poorly articulated speech signifies low cognitive function, it is important to us that Lyra work with a speech therapist, which she has done since she was three months old. An extroverted child who loves to talk, everyone in our family understands Lyra’s speech while other people understand most of what she says, which, again, is little different than most two-year-olds. As Lyra has acquired, one-by-one, the basic skills of living, my fears about my daughter’s abilities have, in equal measure, begun to dissipate. With time, I have come to see that she will get there—“there” being a fully autonomous person—at her own pace, but she will get there.
Yet no matter the successes of Lyra and others liker her, she lives in a society that overwhelmingly treats Down syndrome as an illness, which many people believe should be avoided at all costs. The pervasiveness of this false belief was driven home in the summer of 2014 when evolutionary biologist and ethicist Richard Dawkins tweeted his response to a mother who had asked him what he thought she should do if she discovered the baby she was carrying had Down syndrome: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later defended his tweet by saying to do so would avoid suffering, revealing his utter lack of knowledge about Down syndrome. Clearly Dawkins not only sees Down syndrome as an illness, but he holds the view that people who have an extra twenty-first chromosome are less than fully human. Exposing the tremendous amount of work that needs to be done to educate, well, basically the world. For if an eminent researcher like Richard Dawkins is unaware of the scientific evidence regarding Down syndrome, it troubles me to think what is required to disseminate these facts within the general population.
And, yet, Dawkins’ ignorant tweet was a gift. The response was thunderous and substantial and, as a result, the controversy that ensued reached people who previously knew little or nothing about Down syndrome. Op-ed pieces appeared in newspapers and bloggers wrote about “The Down Syndrome Advantage,” a phrase coined to describe not anecdotal stories, but the scientific evidence regarding Down syndrome, including the following facts:
The divorce rate in families with a child with Down syndrome is lower than in families with a child with other congenital abnormalities and in those with a non-disabled child.
In a sibling study, 88 percent of the respondents reported feeling that they themselves were better people for having siblings with Down syndrome.
Researchers have found that people with Down syndrome have significantly higher “adaptive” skills than their low I.Q. scores might suggest.
99 percent of people surveyed with Down syndrome (284 respondents), including people who are categorized as “medically fragile,” stated that they were personally happy with their own lives.
96 percent of people surveyed with Down syndrome liked the way they looked.
Before I had Lyra, there were things I planned to do if I ever had a daughter. Unlike my own upbringing, which implicitly stressed marrying a financially successful man over all other considerations, I would urge my daughter to find a career path that brought her joy, a sense of fulfillment and financial security. That making a commitment to someone who is financially successful is fine so long as that person truly loves her and makes her happy. To never let someone tell her she could not do something she wanted to do because she is female. That true beauty is derived from respecting and nourishing our bodies, minds and spirits and not to let anything cripple any part of her beautiful being.
The realization I have come to since the early days after Lyra’s birth is that her diagnoses need not change how I have long planned to raise a daughter because there is little, if anything, that Lyra will not be able to do or have simply because she has an extra twenty-first chromosome. What needs to change is the pervasive and radically false notions about Down syndrome that prevent my daughter, and others with Down syndrome, from being treated as fully human.
The first two years with a baby with Down syndrome are a lot of work, but then it all gets easier.
I have repeated that sentence, spoken by the caseworker from our county’s DD Board when Lyra was only a few months old, many times over in my thoughts. Lyra turned two years old in August of last year, and for the past six months, I have considered where Lyra is now, and also how our family has transitioned and developed with this fifth child, our only daughter who has Down syndrome.
Yet I have struggled in my attempts to write about this pivotal place where we find ourselves after long anticipation. Two months ago, I wrote “Two Years This Family” intending to immediately follow that essay with “Two Years This Daughter.” And I tried, writing two lengthy drafts that I promptly shelved. Instead, I found more enjoyment writing other pieces, which are also about Lyra, the reality of Down syndrome today and how our society, by in large, remains misguided in its understanding and treatment of people with Down syndrome. Those essays, like all my writing, did not come easily, but were the products of days spent at my desk, writing and re-writing until my brain, as it does after a long day of writing, would buzz like a nest of agitated hornets. That’s when I know to step away from my computer, consider a shower and head out for a long hike. A missing sentence or section or elusive phrasing will sift up, time and again, when I am deep in the woods, breathing hard as I hike up the hills of a two-mile trail in the metropark near our house, not concentrating, but lightly holding the piece of writing, as though it were floating like a cartoonist’s thought bubble, just above my head. It was good, hard work, resulting in essays that I submitted for publication rather than post on Whoopsie Piggle.
The problem with my previous attempts to write about Lyra at the age of two is the essays were boring to write and, thus, boring to read. It is my job, as a writer, to make the material engaging. But describing therapy sessions that began, in the case of speech, when Lyra was a few months old became a dry litany in my hands: we did this, and then this, and some more of this with a little added that, until here we are today, still doing some of the same, but not all the same and trying out some other things as well. Let’s skip the process for now and get to the results:
Lyra walks and
She talks and
She feeds herself and
She plays with toys, but more often disappears in the house and takes everything out of any cupboard, dresser drawer or laundry basket she finds within her reach that has been left unsecured. “I see it has been raining baby clothes,” Max says after Lyra has shoved, yet again, several of her shirts or Leif’s pants through the railings of the balustrade on the second floor of our home. Clean clothes purloined from the dressers in the adjacent bedrooms only to be flung onto carpeting coated in cat hair. Thanks, kids.
Yes, Lyra’s acquisition of early childhood milestones came later than for most typical children. But not all that much later and now, at two and a half, Lyra is pretty much like any two-year-old.
The difference lies less with our daughter than with us, which is what Lyra’s caseworker meant by “a lot of work.” Before Lyra, I had never broken down the mechanics of a baby learning to hold up her head, sit up, crawl or walk (gross motor skills). Neither had I considered that my babies picked things up by first using their fingers as rakes and later developing a precision pincer grip with their forefingers and thumbs (fine motor skills). Nor had I worked to train a baby’s tongue to move into the mouth and not rest on his lips (important for speech). I know how to drive a car even though I don’t know the first thing about the mechanics of automobiles. Similarly, I have long understood how to raise small children but my focus was on behavior and education, not how their little bodies went from infant blobs to motoring and motor-mouthed toddlers. They took care of that part of development themselves.
This begs the question, for me at least, how would Lyra have developed without interventions? I have no doubt that she would have learned to sit up, crawl and walk, but perhaps later. More importantly, I believe many of the interventions have helped Lyra learn how to move and use her body correctly, minimizing any overcompensation for her low muscle tone, or hypotonia, a hallmark complication of Down syndrome. And as a socially extroverted child, there is no question Lyra would be talking even if she had not had any speech therapy. However, she would be harder to understand. That is because we have spent over two years helping strengthen Lyra’s tongue and train it to stay, for the most part, in her mouth. The importance of tongue placement for speech was explained to us by Talk Tools founder and speech therapist, Sara Rosenfeld-Johnson, at the 2013 National Down Syndrome Congress convention. She told the audience to sit back in their chairs and lift up both legs so that they were parallel to the floor. She then asked us to move our legs, in tandem, from side to side, around in circles, up and down. After that, she asked us to scoot forward on our seats and try to do the same thing with our legs. What was simple when sitting back was nearly impossible when sitting on the edge of our seats. The same is true with tongues and speech. When positioned on the lips, a tongue is far harder to control and speech less precise than when a tongue is positioned inside the mouth.
There are many subtopics and nuances to Lyra’s interventions, such as the significance of music in Lyra’s learning or long-term breast feeding, that are important, sure, but those are perhaps best described in separate essays.
I wish I had worried less about the person my child would become and just enjoyed the baby she was.
I also regularly think of this quote, which I included in the essay, “Learning About Lyra,” more than two years ago. When I first read those words, just weeks after Lyra’s birth, in a book about children with Down syndrome, I knew I should do just that—stop worrying. And I also knew I could not. I had never had a child with Down syndrome. Before Lyra, I knew only one other child with Down syndrome, the daughter of an acquaintance, whom I met once, when she was a baby. After Lyra’s birth, I began to meet other families in the area through our local support group, The Upside of Downs. But equally as helpful has been a closed Facebook group for mothers of children with Down syndrome who were born the same year as Lyra. These support groups helped in the early days as we learned what we could expect for our daughter both immediately and as an adult. Yet I would be lying if I said I have not found myself, on occasion, comparing Lyra to other babies with Down syndrome who acquired developmental milestones before she did.
It turns out what has most helped me to stop worrying about Lyra is Lyra herself. As she moved out of infancy, her personality revealed itself, as any baby’s does. She’s an outgoing, curious child who loves music, dogs, cats and her brothers. Five-year-old Leif now complains that Lyra tackles him and all too often Lyra yells when he pries toys or cookies out of her hands. It’s no different than the way my first two children interacted when they were five and two.
Lyra, my youngest child, is my girl. And she’s Max’s girl. She’s her brothers’ sister and a friend to her mates at daycare. Two years after her birth, all that Lyra is has normalized. Her Down syndrome, her aphakia and contact lenses are no longer novel to us. Just as having a fifth child who is a daughter (a daughter!) has become routine. (Okay, so maybe the daughter part still tickles me like getting a long-desired present.) The point is we are a family of seven, each of us having different personalities and abilities. Claude, who is quiet and steady except when he’s excited, now writes fiction with content more intense than expected from someone so young. Hugo is confident, if not self-absorbed, demonstrably affectionate and sings like an angel. Jules, whose name means youthful, has the oldest soul of us all. He cares for everyone and everything while quietly carrying deep hurts and anger. Leif is like Hugo: bombastic, demanding and sharp-witted. Max, with his implacable patience, may have missed out on the thing he does so well, being a dad, had we not tumbled into his life when he was in his early forties. And I, who spent much of my childhood alone and lonely, never lack for company. Or love. (Could we queue in a little Sister Sledge here, please? You know the tune.)
Our home has been temporarily rearranged. The water bowl for the dogs and cats is now commonly found on the kitchen counter while the bathroom trash cans currently reside atop the closed lids of the toilets. A paper grocery bag containing paper recycling was handily located in the kitchen. Lately it can be found a few feet away in a lower level vestibule, which is inaccessible to the littlest resident of our home who knows how to climb up, but not down, stairs. She mastered stair ascension when she discovered the bin of bath toys hidden in the empty tub, alongside of which is a single step.
Lyra, our curious baby, is on the move and eager to exercise her self-determined mission: find all containers, empty them of their contents and, before spreading said contents far and wide, taste as many of them as possible. Hence, the reorganization of our home, something I have had to do four times before when each of my boys were curious and accomplished crawlers. She may be older than they were at this stage, but she doesn’t look it. Furthermore, her mind works just as theirs did—once a container full of clean diapers or dirty trash, toys or recycling (all equally appealing it seems), has been discovered, the site is frequently revisited.
From my earliest conception of Whoopsie Piggle, I planned to write about our entire family and not just our youngest child, Lyra, and her diagnosis of Down syndrome because her diagnosis neither defines who she is as a person nor who we are as a family. Yes, her diagnosis helps us to understand her needs in order to better meet them, just as the diagnoses of dyslexia helped us to meet the needs of her older brothers, Claude and Jules. In fact, in the past few months it has been harder to write essays isolating the latest in Lyra’s life. On occasion we have bigger issues to address, but most days are entirely mundane and typical of any household with a crawling baby. Lyra is no longer brand new. She exhibits a fully formed personality with many things that make her giggle (her brother Leif, getting tossed in the air, singing to the pretty baby in the mirror, kisses on her neck) and others that make her howl (diaper changes, bedtime, hunger, blood draws, contact lens changes). Lyra is an integrated and integral member of our family. Certainly she has made great developmental strides thus far this year and yet this fact makes her seem all the more typical and her accomplishments less, not more, noteworthy.
A Babyhood of Appointments
The first few years of life for a child with Down syndrome often require regular interventions in order to acquire well-developed gross motor skills (sitting up, crawling, walking, running) and fine motor skills (i.e., purposeful hand skills such as self-feeding), and speech. The common culprit underlying these delays is not necessarily a cognitive issue, but hypotonia, or low muscle tone, which affects almost all babies with Down syndrome. In talking with parents of older children with DS, including adult children, many recall the constant work in the early years of their child’s life. Since she was three months old, Lyra has had regular therapies (speech, physical and occupational). For the last six months, she has gone twice a month to Akron Children’s Hospital for what they call an “infant block” in which all three of her therapies are conducted back-to-back by a team of therapists who discuss and coordinate her care.
When older children and adults receive therapies, as many people do after an injury or medical event, the therapist trains the individual. But when the client is a baby, the therapists train the caregivers more than the client. Yes, Lyra recognizes her therapists and knows her way around the room where they conduct her appointments. But to Lyra therapy must seem like a play date. The occupational therapist blows soap bubbles for Lyra to pop with her forefinger, the speech therapist looks into a mirror with Lyra as together they sing songs and practice sounds, and the physical therapist pulls out toys that engage Lyra so deeply she doesn’t notice she had to climb a small hill or stand up on her own to reach whatever bright, noisy (and oh-so-non-Waldorf) plaything the therapist uses as bait. And then we try to replicate it all at home.
Meanwhile, back at home, Lyra is also visited by her Summit County Developmental Disability Board caseworker and her Cleveland Sight Center caseworker, both of whom observe her progress and also make recommendations, generally taking into account our home environment. For example, instead of buying an expensive Little Tikes climbing wall, as Lyra’s pediatrician had urged, they helped me arrange the tumbling mat we own over some pillows, which Lyra now repeatedly climbs up and over.
Sometimes the folks coming to our home tell us the very same thing I hear at the hospital. Other times, they do not. For example, after Army-crawling for three months, Lyra began crawling on her hands and knees and soon thereafter she started what we call “bear-walking,” or walking on her hands and feet. And even though it has given Lyra a speed and facility at dumping out trash, recycling, toys and whatever else she can find, we have been rooting her on. It’s thrilling to see her motor around and the hospital’s physical therapist agreed. Her caseworkers were less excited. Sure, it’s great that she’s getting stronger and moving. But her back legs were being held too far apart, like an upside down wide V, putting pressure on her hip sockets. Along with hypotonia, people with Down syndrome commonly have ligament laxity and by stressing the exterior of her hip sockets, the caseworkers explained, Lyra can wear down her ligaments thereby opening the door for a host of other issues, including chronic pain.
The solution? Hip Helpers. We used these many months ago, when Lyra was learning to sit up on her own, but they were all but moth-balled since Lyra took off Army-crawling in January. Like a pair of tight spandex shorts, Lyra’s daycare provider and I both refer to them as Lyra’s “Spanx,” the modern day equivalent of a girdle. Hugo calls them Lyra’s “mermaid thingies” as they keep her thighs together like a big fish tail. Under her dresses and skirts, Lyra’s Hip Helpers look like baby shorts, stylish even. With them on, however, she cannot zip around as easily. For now, that is. The goal is to retrain Lyra’s legs to move correctly, and not splayed out, as she ambulates, something she is highly motivated to do (so many trash/toy/recycling bins, so little time).
For two weeks, Lyra wore her Hip Helpers all day, every day. Then we had our next Infant Block appointment at the hospital where the physical therapist pointed out that Lyra locked her knees more when wearing the Hip Helpers. Also important, the hospital therapist questioned making Lyra struggle with a skill she had just acquired (bear crawling). And so, we agreed upon the middle path (or the Buddhist take on pretty much everything)–not too much, not too little and, as of this week, our busy monkey spends about half her days in her Hip Helpers.
Speaking with a Star
I just saw an adult with DS at the movie theater and I wanted to run up and hug him. It was like a celebrity sighting LOL. Is that just me?
~A post on a Facebook group for mothers with babies born in 2012 and 2013 and diagnosed with Down syndrome.
Comedian Rob Snow and his wife, Ellen, who live in Northeast Ohio, founded the non-profit organization, Stand Up For Downs. In his routine titled, “We Need a Sign,” Snow describes a walk he took shortly after his son Henry was born with Down syndrome. When Snow saw a family of children running and playing in their yard, including a girl with Down syndrome, he was momentarily riveted as he watched the girl doing and being everything any other child her age would do or be. When the children ran off, Snow noticed a woman, presumably the girl’s mother, looking at him with irritation, if not outright anger. She thought he was a rude gawker. The moment was awkward and Snow quickly walked away without explaining that he had a newborn son with Down syndrome. We need a sign to let one another know, “Yeah, me too, my child has Down syndrome.”
I laughed throughout most of Snow’s routine at a new parent event sponsored by our local support group when Lyra was only a couple of months old. But as he described staring at the girl and not finding a way to talk with her mother, color rose up my neck and my ears became hot with embarrassment. When Lyra was perhaps a week or two old, we had taken her and the boys to Five Guys Burgers for lunch. Asleep in her car seat, Jules sat with Lyra at a table while the rest of us got in line. Behind us, but separated by another group of people, was a family that reverse-mirrored our own—instead of four boys and a baby girl, they had several daughters and little son, who appeared to be about Leif’s age, which was two-and-a-half at the time. Leif and the little boy pushed the red cordon, hung between posts to form an orderly queue at the restaurant, with their hands to make it swing back and forth. The two little boys were twin-like–they stood at the same height, had equally white-blonde hair, and deep blue eyes. But the other little boy’s eyes had the characteristic shape associated with Down syndrome. Staring does not describe my behavior. I scrutinized the child, who had on a red zip-up hoodie from the Gap and blue jeans, an outfit nearly identical to Leif’s, and only tore my eyes away to shyly smile at the child’s father, a big man with a beard who smiled in return. I wanted desperately to tell him and his wife that my new baby had been diagnosed with Down syndrome but I was uncharacteristically struck speechless.
In the first few months after Lyra was born and we learned she has Down syndrome, I regularly wondered how having an extra chromosome would effect Lyra. Would she talk? Would I be able to understand her? Would she develop like other children or would she be a perpetual infant? I did not know and nobody could tell us. Sighting an older child, even one who was only two or three years old, when Lyra’s life had just begun, loosened my mind’s grip on my worst fears by showing me: This too is possible, a child more alike than different.
Last weekend, we were seated in the waiting room of the lab at Akron Children’s Hospital where we take Lyra quarterly to have her blood drawn for a thyroid level check. A woman and teenaged girl with Down syndrome walked in and I (rudely) listened to the mother give her daughter’s date of birth to the receptionist. The girl had recently turned fourteen, which makes her only a couple of months older than our son Jules. With Lyra in my lap, the mother and daughter began talking to us before they sat down.
“She loves babies,” said the mother.
“Yes, I do!” said the daughter.
When the phlebotomist called for Lyra, Max took her back while I stayed and talked with the two women, and a pattern I’ve now seen many times emerged: the daughter spoke and then the mother repeated and/or clarified what her daughter said.
Me: I love your nail polish.
Girl: My mom did my toes, but I did my hands.
Mom: I did her feet, but she did her fingers, well, most of them I see. She’s so independent; she tells me all the time, I’ll do it myself!
Me: What grade are you in?
Girl: Seventh grade. I love school, I’m a cheerleader.
Mom: She’s in the seventh grade; it’s a great school. They have a cheerleading squad called the “Sparkles.”
Girl: Yes, I’m a cheerleader.
Mom: She’s like a rock star at her school, seriously.
We stopped talking when Max brought out a sobbing Lyra with both elbows wrapped in Day-Glo pink cling tape, used these days instead of Band-aids to hold a gauze compress at the site of the blood draw. They had not been able to get a sample of Lyra’s blood and Max described a scene I’ve witnessed all too often in which the phlebotomist sticks Lyra’s arm with the needle but cannot find the vein and begins grinding the needle around in her arm in an attempt to locate the vein. We were told to bring her back on another day for another round of this torture.
As I begin comfort-nursing Lyra, the girl I had been talking with was called back for her blood draw and in what seems like less than a minute, she’s back out, tear-free.
“Wow, that was fast!” I told her.
“Yeah, I’m a big girl,” she said and Max slapped her a high-five.
Right Before Our Eyes—What We Did Not Know
“20/270, that eye is legally blind and 20/180, that eye is what they call ‘legally visually impaired’ but any school district would categorize her as legally blind,” said Lyra’s vision specialist.
“That’s with her contact lenses in?”
“Oh, yes. Without the contacts—well, she has no lenses inside her eyes, as you know, and without the contacts, it would be much worse.”
“But how can this be? Every time we see the ophthalmologist, he tells us her eyes look great and that he couldn’t be more pleased. And she sees us, the things she plays with. I mean, she certainly moves from one side of the kitchen to the other to get to the bag of paper recycling. Is it just that she remembers that it’s there?”
“Well, certainly her memory is helping play a role in how she uses her vision. This is a very non-medical explanation, but imagine what you see at 270 feet, she would need to be only 20 feet away to see the same thing. And I like to tell my parents that it is like a big funnel. Right now, Lyra is looking at the big world around her, but as she begins to focus on holding a crayon, writing, reading—really narrowing her field of vision for specific tasks, her visual limitations will become more apparent.”
I paused and thought of something I had long noticed: when Lyra is in my arms, her eyes are wide open, big and blue and often staring into my own. But when she is more than a couple feet away, she squints. I have a hard time capturing her in photos without her squinting, but usually when I am taking her picture, I am more than a couple of feet away. Just as when I try to read the clock in the morning without first putting on my glasses, Lyra squints in an effort to see more clearly.
“So what I want from you now,” I said, my voice becoming husky as I grabbed a tissue to mop the tears suddenly springing out from behind my glasses, “is for you to look into your crystal ball. Like, does this mean she’ll walk with a cane?”
“Well, first of all, I think her left eye is already better than when this last test was taken. And we have until she is about age five or six for her eyes to improve. Now when she starts walking, she’ll probably have glasses as well as her contacts because she’ll need the glasses to give her the ability to see in the distance, like a bifocal.”
“But it’s good she’s crawling for so long because she is learning where all the bumps are in your floors.”
“Wow, so I guess we can never move from this house.”
“Nope,” said the vision specialist and smiling playfully she added, “Nor can you ever move the furniture.”
“So what about when she’s out? She will need a cane then?” The notion of Lyra walking with a cane suddenly became emblematic of everything I feared about her being blind: With just a glance, anyone would recognize her two disabilities for which she may be unfairly assessed as not capable of any number of things she deserves, including employment, housing, and civility.
“Well, I can’t say for sure, but I don’t think so. However, we will teach her techniques, such as sliding the outside of her hand, with her fingers cupped so they don’t get caught behind things like fire extinguishers, alongside the wall of a room she’s unfamiliar with so she’ll not run into things.”
“Ahh,” I say as it all starts to click.
All We Can Handle
I’ve long known that Lyra’s ophthalmologist does not like to talk about Lyra’s vision, or about what procedures, or outcomes to anticipate. I know this because he’s told me as much. I chalk it up to needing to wait and see how Lyra develops. If she does great with contact lenses, stick with contacts and avoid more surgery. At her strabismus surgeries last summer, her ophthalmologist told us that as she got older he would be able to put her in different, less bulbous, contact lenses. Her vision was corrected for the world of a baby, roughly up to two feet away, but he said that he’d change her correction as she got older and began walking.
Because of these conversations, we believed all along that Lyra was seeing, well normally, like most any other baby. Instead she’s legally blind. I only worried about it when another mother wrote to me, a woman I do not know but who recently was put in touch with me by a mutual friend. This woman’s son, who is a few months younger than Lyra, was also born with bilateral cataracts and now sees at 20/60 and 20/90 and she was worried about what his future would be like. I wrote and told this mother what we are doing for Lyra but never heard from her again and I wonder if it isn’t because Lyra’s vision is substantially worse than her son’s vision. Her letter inspired me to call Lyra’s vision specialist and ask her to sit down and tell me what a vision acuity score of 20/180 and 20/270 mean for Lyra long term.
I imagine had the ophthalmologist told me in detail at Lyra’s first surgeries, more than a year and a half ago, what we would be facing when she was older, it would have overwhelmed me or, at the least, been so much information on top of the information we needed in the immediate moment, that I would have forgotten much of what he said. To be honest, perhaps he did tell us much of what we now need to consider and it did slip into the cracks of my overloaded brain.
Climbing mountains, no matter how high, happens one step at a time.
Normal Is As Normal Does
Lyra will turn two in August. She talks, uses sign language, plays with her brothers and her daycare friends, sings songs, makes animal sounds on her own and when asked, crawls, “sorts” laundry, pats my back just as I pat hers, just as all my babies often patted my back when held up to my shoulder because that is what I do to them. Lyra’s daycare provider could not love Lyra more if she were her biological niece. Everyday of her life, everywhere she goes, Lyra is encouraged to move her body in ways that will protect her health long-term, and avoid issues such as displaced hips and pronated feet.
We did not anticipate how musical Lyra would be when we gave her a name related to the word “lyrical.” Perhaps the name was providentially chosen for nothing pleases Lyra more than singing. Much of her speech has developed through song, she is calmed by song when sad and I even use it as part of my arsenal to distract her when need be. Placing her in front of the mirror on my dresser, Lyra and I sing together while pulling her hair back into a ponytail, something she otherwise resists.
For several weeks, Lyra’s team, including everyone in the family, her therapists and her daycare provider have talked about how it’s coming together beautifully for Lyra and all the progress she has made and continues to make. At Akron Children’s Hospital, the therapists tell me, each and every visit, what a thrill it is for them to see what new things Lyra has learned since her previous visit.
Learning Lyra is legally blind was not devastating, but to use a cliché, I felt the wind drop from the sails of all that wonderful momentum in Lyra’s development. This too? Isn’t Down syndrome enough? But that is me feeling sorry mostly for me and not Lyra who, after all, only knows what she knows. For her, life is full of loving people and good times. She’s as happy as a baby should be and not moping about because she has to work harder to crawl and can’t see as well as anyone else she knows. Again, for now at least, she isn’t aware of any differences. Who knows how she’ll feel one day when she does realize how her life is different? My personal experience now having met so many people of all ages with Down syndrome, as well as the scientific research, gives me every reason to believe Lyra will be happy with who she is.
So we breathe in, breathe out and pick up the phone. First call: The ophthalmologist to learn what we can do to improve Lyra’s vision before she turns five years old. Second call: The vision specialist to learn what compensatory techniques Lyra can begin learning now.
And, as with all things, our journey continues. One step at a time.
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.
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.
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.
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.
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.
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.
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.
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.
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.
The 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.
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.
“What’s the word you just used?” I asked Lyra’s ophthalmologist.
“Myelinate. It’s a coating over the nerves, just like that wire down there,” he said pointing to the floor where a thick cable traveled a short distance from the exam chair I was sitting in, holding Lyra in my lap, to the wall where it was plugged into an outlet. “Because those wires are insulated, currents travel faster than if they were not. Our nerves are the same and children with Down syndrome tend to myelinate a little later than other kids.”
Like her pediatrician, Lyra’s eye surgeon is incredibly smart. He observably delights in answering questions and, if we are discussing eyes and not nerves, he often dashes over to a poster on the wall that illustrates the anatomy of the human eye. At her last visit, I shared with him how she had changed since beginning treatment for hypothyroidism in early April. It’s not that she seems more intelligent, but rather she’s more alert and awake. A leader in a Ds support group told me that “our babies” tend to wake up at around nine months, but she was not sure why. Learning why from the ophthalmologist reminds me that I cannot rely on any one source—be it a book, website, support group or even a doctor who specializes in Ds—to fully inform me. I need to continually synthesize all the resources available to us, the parents of a child with Ds.
And I see the beginning of a lifelong pattern of questioning whether or not something is the direct result of Lyra’s Ds. Earlier, I had asked if she refused a bottle because of the hypotonia attendant to Ds. Because she is a champ at breastfeeding, which requires more muscle strength than drinking from a bottle, I believe Lyra’s rejection of bottles is purely personality and not due to any Ds related hypotonia. Now, we’ve learned, her new vivaciousness is attributable to her Ds and not her pharmacological treatment for her thyroid issues.
Because they are generally smaller than typical children, doctors use a growth chart specifically designed for children with Ds. At an appointment in late March, just a week before she began taking Synthroid for her hypothyroidism, Lyra was 24 inches tall, which put her in the 20th percentile for children with Ds. After two months on Synthroid, she was 26 inches tall, putting her in the 50th percentile for kids with Ds. She has gained nearly two pounds and now weighs a little more than 14 pounds. That keeps her where she was at in March, in the 30th percentile for weight, but, again, that may not be caused by anything atypical. Though she eats food, Lyra is exclusively breastfed and after six months of age, breastfed babies tend to gain weight more slowly than formula fed babies. This was true with all of my boys whom I used to joke about being on some virtual taffy-pulling machine—they’d grow taller and taller and taller without any commensurate weight gain. At nineteen Claude is still a lean drink of water, weighing in at 160 pounds on his 6’2” frame.
For several months, Lyra wore clothes sized for the average three-month-old. She grew, but so incrementally as to be stalled out at size three months. Most babies triple in weight their first year and darling outfits easily become hand-me-downs after only one or two wearings, size three months being a brief weigh station on a quick journey to size twelve months. Or so it had been with all four boys when they were babies. With Lyra, I grew downright sick of dressing her in the same limited collection of clothes. In May, I went out and bought her some new things sized 3-6 months—they fit but with room for growth. After all, she is my only girl and part of the fun is the pretty clothes. Now, at ten months old and after three months of taking Synthroid, I can finally dress Lyra in the size six months clothes I’ve been longing for her to grow into.
The delays aren’t as noticeable the first year because babyhood milestones have broad acceptable quantifiers of acquisition. You’ll notice more delays in the second year of life. ~A physical therapist from the county who evaluated Lyra at six weeks of age.
It’s been a long time since someone has asked me if Lyra is a baby doll or a real baby (see“Lyra’s Latest: Wee Teeny Peanut”). Not only is she bigger, she’s more active and wiggles in my arms rather than inactively reposing like a dolly. Recently, I began carrying Lyra like a proper baby—on my left hip. Though she does not yet sit up on the floor without assistance, she does sit upright in my arms (and in her bouncy seat, and her Bumbo, and next to anyone who sits with her on the couch). She hangs on to my clothes and, when she can reach it, pulls a silver pendant I often wear into her mouth, biting the cool metal to soothe her toothless gums. She also grabs for our glasses—Jules and Leif are the only people in the house who don’t wear them. Hugo often lets her succeed and she thanks him by coating his spectacles with drool.
Crawling is a four-point system of knees and hands. In Lyra’s physical therapy, we’ve focused on breaking down the components of front and back. When she’s on her belly, we gently encourage her to put weight on her arms. We also take turns sitting cross-legged on the floor with Lyra in the center of our laps. As she leans over a thigh to play with toys set out for her, we bend her legs and make her knees bear weight. We’ve been doing this since April after she mastered rolling over.
At the home daycare both Leif and Lyra attend there are two baby boys just a few weeks older than our girl. At the beginning of the year, I observed these boys rising up on their arms, later finding their knees, rocking on all fours, and eventually crawling. They now stand, albeit briefly, on their own before kerfloping back down on their diaper-cushioned bottoms. Soon they will be walking. It’s hard not to compare. Impossible, really.
And so we were thrilled when, three weeks ago, Lyra began lifting herself up on her arms, both with her elbows bent and with them locked. We continue to cheer for her whenever we see her lift up, doing her baby workout. Come on, peanut, give me five push-ups, lift, lift, lift! Sooo big! Big girl! That’s right! Yay, Lyra, yay!!!
At Lyra’s nine-month-old visit with her pediatrician, Dr. M asked me if Lyra was picking up pieces of cereal with her forefinger and thumb yet. “No, but she grabs them with her whole hand,” I told her. Not good enough. Lyra will be evaluated by an occupational therapist next week. Perhaps we are not objective on this count because she seems fine to us, regularly grabbing at things she wants, like my necklace or our glasses. When seated in her Bumbo, we have to clear an 18 inch circle around Lyra. This is because she will suddenly pivot in unpredictable directions and dart her hands to grab at whatever she sees—a glass bowl filled with apples, half full cups of hot coffee, sharp knives. Okay, no knives, but you get the point, if it’s there, Lyra’s liable to grab it. And really, that’s comforting on many levels. First of all, she’s seeing. She’s then processing the information and thinking (I imagine) gimme that! And, finally, she is successfully directing her hand to grab what she sees and wants.
Erupting from our house this past month are sounds like those from a stadium full of hometown fans watching their team win the championship. Lyra is given robust rounds of cheers when she lifts up on her arms. Her brother, Leif, has gotten many too as he has moved from diapers to underwear, even at night. Last week, Lyra decided to cheer too. If anyone says, “Yay!” Lyra lays open a knowing grin and with her fingers wide apart, she closely watches as her two hands and come together again and again. And we cheer again because it’s mighty cute.
She Poops. Pellets. Occasionally.
One of the many symptoms of hypothyroidism is constipation. And so I was quite hopeful that after Lyra had been on her medication for a few weeks, she would resume having soft and regular bowel movements. Things did seem to improve at first, and then they went back to the hard, black stools, produced every three to five days, which remind me of owl pellets found in the woods. But owls are carnivores while Lyra eats fruits, vegetables, oat cereal and fish when we have it; all of which she washes down with breastmilk. In other words, a diet that should keep things soft and regular.
I know Lyra’s cries better than I recall knowing those of my other babies. She grunts and squawks when she’s hungry but when she’s tired she whines and yells out. When she’s pooping, she hisses out a breathy scream of pain. I quickly move to open her diaper because her clay hard stools get wedged against her diaper. They can back up in her bottom if I don’t take her diaper off.
Recently a friend of ours recommended a homeopathic remedy. When chosen correctly, I’ve seen homeopathic remedies arrest illnesses with such remarkable speed it’s as though someone waved a magic wand. Which remedy to take is determined by what might otherwise seem like an odd assortment of questions. Seated next to me while I was nursing Lyra, my friend noticed Lyra’s head glistening with perspiration and asked, “Does she always sweat when she nurses?” She does. “Does she have trouble with constipation?” Oh, yeah. “Have her try a dose of calc carb, you can get it at the Mustard Seed.”
I bought the remedy a few days later. The information at the store said it helped cradle cap, the waxy debris that forms on the scalps of many babies. Lyra has that too. I gave her a dose two weeks ago. I gave her another one last week. The other night I was abruptly awakened by Lyra’s aspirant cries. “Turn on the light,” I told Max as I grabbed her from the crib next to my side of the bed. I peeled off Lyra’s jammies and cracked open her diaper. A ball of poo rolled forward in her open diaper, leaving no trail. Lyra sobbed as one does after a physical trial and I held her naked in my arms until she was calm.
I’m at a loss for what to try next. I’ve resisted stool softeners as they are not without side effects, but feel I may need to reconsider that decision if pooping does not become a less painful ordeal for Lyra. Whenever I am sure there is no other recourse, she has a couple of softer, less painful movements. And I again hesitate to interfere with I hope is a long, and nearly complete, process towards regulating.
When I pick Lyra up at daycare, I immediately nurse her. She sits in my arms and looks into my eyes, her left eye crossed in slightly, but both seeing me. She reaches up for my hair as I talk to her. When she finishes nursing and is seated in my lap, she repeatedly tilts her head back to look up at me while I talk to Jenny, her daycare provider.
“There is nothing your daughter will not be able to do because of her vision,” the eye surgeon told me several months ago. Last month, he wanted to put Lyra under general anesthesia to conduct a full exam of her eyes. It still takes three of us in his office to change her contact lenses, so examining the interior of her eyes when she is awake is not really an option.
They cancelled the examination, which is treated like surgery, when her blood work came back. After seven weeks on Synthroid, Lyra went from having too much TSH to not enough. The endocrinologist cut her dosage in half and we will test her blood again in July. If she has reached “therapeutic levels” of TSH, her eye surgeon will examine her eyes in August. The postponment of the initial exam under anesthesia was a blessing because the ophthalmologist has since decided that it is time to tighten Lyra’s eye muscles to correct her crossed eyes. Delaying the first proceedure means one less time Lyra has to undergo general anesthesia.
Long ago, in our first visit with her, Dr. M (whose daughter also has Ds) told us about our kids taking hits to the brain. “They have Ds, that’s a hit. If they develop anemia, that’s another hit. Then, if they have open heart surgery, they take another hit.” I asked her if their brains recover from the hit of open heart surgery. “No, the same is true with adults. There’s something about the reduction of pressure during surgery.” I don’t know if the brain takes a hit when undergoing general anesthesia, but it seems to me that it is something best avoided except when absolutely necessary.
As for her crossed eyes, it’ll be good to have them corrected and she’ll have better depth perception, if not overall vision, when they are tracking in tandem. I’ve often wondered which I eye I should look into when talking to someone with crossed eyes, as it’s impossible to keep my two tracking eyes on two different focal points. I don’t have that problem with Lyra and I cannot tell you why. As kitschy as it sounds, I think it’s because when I look at her, I see her with the love I have for her and my brain doesn’t have a chance to natter at me about which eye I should look at. I see my girl. Or my “sweetness” as Jenny calls her.
The Child I Most Needed to Mother
When I was five months pregnant with Lyra, I went to see an astrologer. It was not the first time I had met with this woman, who lives three hours away in Yellow Springs, Ohio. In 1997, Hugo was a colicky baby who cried in my arms while the astrologer, whose name is Lynn, described the meaning of all the various planets in my birth chart. Saturn in this house, the moon in that house, this aspect rising, another descending. Since that time, I have seen her every so often, sometimes after many years, for what is called a “progressive” or where things are now in my chart.
Without going into whether astrology is real or hockum, I recognize that belief systems have long intrigued me. So much so that my primary undergraduate degree is in religious studies. Personally, I don’t put much value in absolute truths, because they are absolutely subjective. I will say that each of my readings with Lynn have resonated in unanticipated ways.
“Your intuitive connection with this baby will be stronger than with any of your other children,” she told me as I sat full bellied in her consulting room. “As a result, this child will know when you are bullshitting and will tell you so. You will not be able to fool her, but she will read and know you with great empathy. Because of this bond, she will be a harder child to leave. Don’t be shocked if you find it hard to send her to daycare so you can go back to work fulltime.
I didn’t ask Lynn any questions about my baby, but she kept returning to her. Nor did I know that the baby I was carrying had Down syndrome, in fact, I’d been told otherwise. And yet Lynn’s description of the baby growing in my womb fit the description of a child with Ds in many ways.
“Because your moon is in Neptune, there is an interesting aspect to this baby. She will be deeply empathetic and so open that you should be cautious of who you let hold her. Do not pass her to someone she does not want to go to.”
After circling back time and again to talk about the baby during my hour long appointment with her, Lynn returned one more time as she ended our session:
“This is the child you most need to mother. Listen, I’m not saying she most needs you, but you most need her. There is more for you in this child, a deeper meaning in being her mother.” And then, almost as an afterthought, she threw out there, “Oh, and expect some sort of giftedness in this child, she’ll be musical or artistic.”
When the boys were little, I posted quotes in places where they would have no choice but to read them. The best spot is next to the toilet. Often, I would take discarded watercolor paper the boys had painted with pastel colors at the Waldorf school. I would cut the paper into shapes, flowers or just round-edged rectangles, and then I would sit down and slowly copy a quote that had struck me, such as one from Marcus Aurelius:
When you arise in the morning, think of what a privilege it is to be alive: to breathe, to think, to enjoy, to love.
Or a passage from a book like The Arabian Nights:
A fool may be known by six things: anger, without cause; speech, without profit; change, without progress; inquiry, without object; putting trust in a stranger, and mistaking foes for friends.
Other times, I would just pin cards to the wall or cut out quotes from the newspaper and tape them up. Of them all, what the boys committed most deeply to memory, and for years have frequently cited, is a small line from a long list of famous things Ben Franklin is purported to have said: Beer is a sign that God loves us and wants us to be happy.
Over time, and particularly when moving to the new house, these scraps of sayings have disappeared. Of all the ones I penned on watercolor so many years ago, the one I think of most often was an abridged quote from the Indiana lawyer-poet, Max Ehrmann:
You are a child of the universe…And whether or not it is clear to you, no doubt the universe is unfolding as it should.
“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.