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unlike far too many of today’s health care professionals, they need to give information based not on assumptions or on outdated and false stereotypes, but on facts.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.
I see you and Max acting so bravely, but nobody asks for a child with Down syndrome.
I recalled those sugar-coated words of sympathy, spoken by a relative of ours a few weeks after our beautiful, healthy daughter was born, when I read of Richard Dawkins’ advice to an expectant mother. Dawkins is an Oxford professor of evolutionary biology and an ethicist, who is perhaps best known for his 2006 book, The God Delusion, written to contend with those who deny the existence of evolution. In August of 2014, Dawkins tweeted to a woman who had inquired what he thought she should do if the fetus she was carrying tested positive for Down syndrome:
“Abort it and try again. It would be immoral to bring it into the world if you have the choice.”
Dawkins’ tweet went viral (I think largely because of his use of the word “immoral”), which he later defended as the humane position to take in order to avoid suffering. His position reveals how much remains to be done to educate everyone who does not know someone with Down syndrome, which was underscored when the outrage at his tweet seemed more focused on Dawkins’ atheism than his stand on aborting all fetuses with Down syndrome.
I don’t find Dawkins’ atheism to be any more controversial than the multitude of religions practiced by humans worldwide. What bothered me is that this somewhat firebrand scientist, who is not afraid to challenge dominant thinking, simply accepted an unsubstantiated position widely held by most people, i.e. Down syndrome equals suffering, and uncritically endorsed exactly what happens in the majority of cases where a woman discovers the fetus she is carrying has Down syndrome—the termination of her pregnancy.
This disconnect is not a function of religion, compassion, or a lack thereof, but is rather the result of a stunning lack of facts.
Not Your Grandparents’ Down Syndrome
Before the 1980s most people, including me, did not grow up knowing anyone with Down syndrome. That is because, until the 1980s, the overwhelming majority of people with Down syndrome were institutionalized, often beginning at birth.
Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in 1964, a longitudinal study was conducted comparing a group of infants with Down syndrome who were institutionalized to a group who were raised at home. The study continued until the children were eight years old and found the children 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.” These studies were some of the the the earliest steps in re-thinking what it means to have Down syndrome and to reconsider the wholesale institutionalization of this population.
I was born in 1965 and never saw a single child with Down syndrome enrolled in any of the ten schools I attended, in four different states, from kindergarten through high school. Nor did I grow up seeing adults with Down syndrome working, as they commonly do today, in grocery stores, restaurants, offices or any other businesses that serve the public.
The first people I met with Down syndrome were adults in group homes where my parents worked. Overwhelmingly, these residents with Down syndrome had lived most of their lives in institutions, only moving into group homes when, in the 1980s, the institutions were dismantled by the U.S. government. As I explain in my essay, “Changing Expectations,” what I as a young woman mistook as the reality of life with Down syndrome was based upon meeting people who had spent their entire lives institutionalized. The consequences of life-long institutionalization, where social and emotional deprivation is the norm, is catastrophic for any human being, as shown in studies (and these) of typical children raised in Romanian orphanages in the 1980s and ’90s.
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 Down syndrome. For children with Down syndrome most often meet, and regularly exceed, the goals set before them.
At the same time that children with Down syndrome were beginning to be raised at home and national organizations were advocating on their behalf, the therapeutic professions, including physical, occupational and speech, began working with infants and young children with Down syndrome. Four decades later, these professionals and others have continued to discover more and better ways to enhance the physical and linguistic skills of children with Down syndrome. In other words, when our now two-year-old daughter Lyra is 18, it is likely that she will be capable of more than what most 18-year-olds with Down syndrome are capable of today. That is because today we know much more about therapies and interventions for young children with Down syndrome than we did 18 years ago and this trend will only continue.
We live in exciting times for people with Down syndrome. There is every reason to expect a baby born today with Down syndrome to live a full and productive life, including mainstream schooling, college or other post-secondary training, independent living, careers, marriage and even (what surprised me the most) driving automobiles.
And this is where the disconnect of information exists. People who are not in the Down syndrome community, as well as many medical professionals who should know better, overwhelmingly still believe, perpetuate, and make decisions based upon grossly false assumptions about Down syndrome.
Historically, the abilities of people with Down syndrome were wrongly underestimated.
The end of institutionalization combined with appropriate medical and therapeutic interventions have radically increased the abilities, skills and life expectancy of people with Down syndrome.
In era when so much is possible that people with Down syndrome truly are more alike than different from the typical population, the Down syndrome population is being targeted, usually under the misguided assumption of minimizing suffering, for significant (and in the case of Denmark, complete) elimination.
The Down Syndrome Advantage
Dawkins’ tweets on Down syndrome and abortion was simply a personal statement of what is the dominant opinion in North America and Europe. Statistics show that most women who discover their fetus has Down syndrome elect to terminate the pregnancy, even in Ireland where abortion is illegal. A week after Dawkins’ tweets went viral, an op-ed piece appeared in the New York Times. In“The Truth About Down Syndrome,” authors Jamie Edgin and Fabian Fernandez cite several statistics from research on people with Down syndrome and their families, including some that I have presented in previous essays:
The divorce rate in families that have a child with Down syndrome was found to be lower than in families that have a child with other congenital abnormalities and lower than those that have a non-disabled child.
In a sibling study, 88 percent of the respondents reported feeling that they themselves were better people for having younger siblings with Down syndrome.
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.
Researchers have found that people with Down syndrome have significantly higher “adaptive” skills than their low IQ scores might suggest.
These and similar statistics are why the phrase “the Down syndrome advantage” has been coined. For it seems, when reviewing the now substantial body of scientific research on life for people with Down syndrome and their families, that rather than suffering, most of these people are experiencing a higher quality of life than all those poor folks who do not have Down syndrome or a family member with Down syndrome. Why, then, does the perception of suffering persist?
Latent Bias for the Developmentally Disabled
There has been plenty of research on the existence of latent racism, as Nicholas Kristoff reported in August of 2014, even people who “deplore racism…harbor unconscious attitudes that result in discriminatory policies and behaviors.” Similarly, the term “suffering,” when used in a discussion about developmental disabilities, seems to be code, perhaps subconsciously so, for latent discrimination against people with lower intelligence.
For example, bipolar disorder is a genetic condition and while schizophrenia may not be genetic, it is certainly a biological event and these two mental illnesses often afflict people of incredible intelligence and creativity, who can and regularly do suffer greatly, as do their families. And while those who have mental illness share with the developmentally disabled a long overdue need for greater support, compassion and medical research, I don’t detect a movement afoot to prenatally eliminate intelligent people with mental illnesses simply because they and their families will surely suffer.
An even better comparison might be cystic fibrosis, a genetic disease that until the 1950s killed most children with the condition by the age of five. In a time span mirroring the same decades in which medical progress has occurred in the treatment of children with Down syndrome, today babies born with cystic fibrosis can be expected to live well into their thirties or forties, or approximately half as many years as the average population. In their shorter lives, a person with cystic fibrosis can expect frequent medical appointments and, not uncommonly, emergency hospitals stays. That is to say that the majority of people with cystic fibrosis are more medically fragile than most people with Down syndrome. However, people with cystic fibrosis do not have delays or disabilities in cognition related to their condition. Do people with cystic fibrosis suffer? I leave it to them to say, but their lives are no less, and often are far more, medically compromised than the lives of people with Down syndrome. Are people with cystic fibrosis less valued members of society because of their shorter life spans? It seems not and, again, there is no push to eliminate prenatally people with cystic fibrosis no matter how much they and their families might suffer.
The standard all too often applied when considering a prenatal diagnosis of Down syndrome is the avoidance of presumed (and statistically unproven) suffering outweighing the value of a diverse population. This same standard is never applied when discussing the lives of people with average or above average IQs who have congenital or genetic conditions other than Down syndrome, even when those conditions lead to unquestionable and significant suffering.
Granted, today there are no prenatal tests available for many of these conditions, but that may likely change. And when it does, there should never be any movements to eliminate entire populations of people with mental illness or cystic fibrosis like there currently is to eliminate people with Down syndrome. Rather, as a society we should devote funding for research to find effective means of ameliorating the negative effects of of these and other conditions. Yet repeatedly I have heard from researchers who work on finding ways to improve the lives of people living with Down syndrome that funding for research on Down syndrome has been reduced in the past few years, being diverted instead to prenatal testing research.
Informed by Experience
While it is true that in Europe and North America the majority of fetuses that test positive for Down syndrome are aborted, the number of women choosing to keep their babies when receiving a positive test for Down syndrome has increased slightly in the past two decades. Researchers believe this is because “women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers — perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street.”
To know someone who looks or lives differently than you is to discover their inherent humanity, evaporating any “otherness.” People with Down syndrome are indeed more alike than different, but they are also inspiring. Inspiring because of their accomplishments in a society that remains largely ignorant of what it means to have Down syndrome. Inspiring because, yes, a person with Down syndrome often has to work harder than his or her siblings and classmates to achieve the same things. But time and again, they go on to succeed, and even surpass, expectations.
Those of us in the Down syndrome community know the value of people with Down syndrome and many families have publicly invited Dawkins to meet their sons and daughters. Toward that end, I speak with other families each year to first-year medical students at Case Western Reserve University. We share our experiences of having a child with Down syndrome, while older children with Down syndrome speak directly with the students. I am always impressed by the level of engagement of these students, who seem to get it, that people with Down syndrome are fully human, long before listening to us. Last year, when I mentioned adoption agencies that specialize in the placement of children with Down syndrome, one of the professors interrupted me.
“I just want you all to know,” she said, “that there are far longer waiting lists to adopt children with Down syndrome than for typical children.”
Which is to say a significant number of people do, indeed, ask for a child with Down syndrome.
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.
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.