The first year of my daughter’s life felt like graduate school on all things Down syndrome (DS). Shortly before her first birthday, I attended the Down Syndrome Congress annual convention where I learned about many interventions and supports that would maximize her potential to live a full — and possibly independent — life.
At that 2013 convention, I knew several other mothers. We had met on a Down Syndrome Diagnosis Network’s closed Facebook group for mothers. The groups are organized by the ages of their children with DS. Many of us were meeting each other, as well as many of our babies, in person for the first time.
Information, while powerful, can also be intimidating. With a panicked look on her face, a mother approached me in a hallway and told me she’d just learned that our children would inevitably develop dementia in their 50s.
In one moment, everything I’d envisioned for my daughter’s life suddenly felt like a large steamship moving out to sea, getting smaller and smaller.
The life expectancy of a baby born with Down syndrome in the 1980s was 25. Today it is 61 and continues to climb. As the number of people with Down syndrome living into old age increased, it became evident that 80% to 90% of those older than 50 exhibited signs of dementia.
In the same four decades, research on Alzheimer’s has increased substantially, including in the DS population. We now know that by their 40s the brains of people with DS will have acquired the pathologies, or physical changes, for Alzheimer’s (such as amyloid plaques) with most becoming symptomatic in their 50s.
I recently interviewed Dr. Elizabeth Head, a neuropathology core co-investigator at the Alzheimer’s Disease Research Center at University of California Irvine. While she collaborates with researchers studying Alzheimer’s in the general population, her research is focused specifically on the Down syndrome population.
This win-win approach, in which anything learned about Alzheimer’s by either research team benefits everyone, is encouraging. But what about treatments unique to people with DS? Will today’s research yield treatments and therapies that will minimize my daughter’s likelihood of developing dementia?
Dr. Head’s answer is a cautiously optimistic yes. Her team and others are conducting longitudinal studies, in which volunteers with Down syndrome participate for many years, discovering relevant data that are the building blocks for future treatments.
Using biomaterial from the DownSyndrome Achieves biobank at Cincinnati Children’s Hospital Medical Center, the many scientists in Dr. Head’s team look for biomarkers to identify who is on the trajectory to developing dementia and — just as important — who is not. Only the DSA biobank is open to all qualified researchers and not specific to one institution.
Dr. Head’s observational studies, as well as others occurring around the world, suggest that 10% to 15% of people with DS are resistant to dementia even when the brain pathologies associated with dementia are present.
“Knowing which brain proteins may be involved, we can then perhaps develop interventions and some of those interventions will be more effective based upon the age of the person,” Dr. Head said. “What works for someone in their 40s might not work well for someone in their 30s.”
In recent years, scientists have determined that the brain remains plastic throughout our lives, including in old age. This means that there isn’t an age for which potential interventions for improved cognition should no longer be studied.
Perhaps the best news from Dr. Head is that just because a family didn’t begin interventions for their loved one with DS as a baby or small child does not mean that person is on a trajectory for something bad later.
Many studies looking at treatments for Alzheimer’s in people with DS are occurring now, with more in the works. There is great promise that in the coming decades a diagnosis of DS will no longer mean that dementia is nearly inevitable.
There is also a growing body of research that, as with the general population, lifestyle choices can minimize the likelihood of a person with DS developing dementia. These lifestyle choices, which can be implemented today, include a nutritious diet, exercise, rich social interactions and continuous learning.
Dr. Head encourages families to include simple exercises like walking daily, eating nutrient-rich foods and having adults with DS continue to learn new skills. She suggests taking classes, such as cooking (another way to increase healthy meal options) or learning to play an instrument.
“Nothing should be held back from people with Down syndrome,” Dr. Head said.
The donation of biomaterial of people with Down syndrome, such as blood, is modestly painful but significantly impacts the work of Dr. Head and her team as well as other DS researchers around the world. I strongly encourage people with DS to donate biomaterial for this and other research.
Families know how hard their loved ones with Down syndrome work from the first day of life. Their levels of cognition and independence have the potential to be maintained throughout life by supporting the important and exciting research occurring today.
This was first published in the Akron Beacon Journal on Sunday, December 11, 2022.
SAIL students attend a general education classroom, as well as specials (gym, art, music) with neurotypical peers, and return to their SAIL classroom with its dedicated intervention specialist for additional instruction. Some students require an aid, others do not. The time spent in the general education classrooms provides positive language and behavior modeling, along with academic instruction.
In the decades after World War II, families in America and other countries whose newborns had Down syndrome were told it was in everyone’s best interests that the child be placed in an institution immediately, usually never to be seen by the family again.
Warehoused, neglected and often abused, frequently for the duration of their lives, these people did not develop to their full potential, but not because they had Down syndrome. Institutionalization was a self-fulfilling prophecy of low expectations.
That study was one of the early steps in rethinking what it means to have Down syndrome and reconsidering the wholesale institutionalization of this population.
(Now is a good time to grab a paper and pencil to write down some of the many educational acronyms I’m about to spell out. Ready? OK.)
In 1975, Congress passed what is now known as the Individuals with Disabilities Education Act (IDEA), requiring public schools to no longer restrict children with intellectual and/or physical disabilities from attending.
In the decades since, as children with intellectual disabilities now mostly remain with their birth families (or are adopted by other families), and early interventions in speech, physical and occupational therapies have become commonplace, previous assumptions of what a Down syndrome diagnosis means have been decimated.
And yet, as a mother of a child with Down syndrome, I am not always confident that I am providing my daughter, Lyra, with the education she needs. In hindsight, her first three years of life — when I was panicked about her correctly learning how to walk, talk and use her hands — seem like a cakewalk.
Shortly after her third birthday, Lyra became a preschooler at Akron Public Schools’ Early Learning Program, which enrolls kids with and without disabilities. For three years, Lyra was in a classroom with fewer than 10 students staffed by several adults, and received regular therapies along with academic instruction.
At age 6, Lyra began kindergarten in a general education classroom at Case Elementary. Her IEP called for her to work with an intervention specialist (what we used to call a special ed teacher). That educational structure is called “cross category,” or “cross-cat” for short, as the children are instructed in general education and special education settings.
Then, in 1964, a longitudinal study compared a group of infants with Down syndrome who were institutionalized to a group who were raised at home. Eight years later, findings showed that 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.”
Sometimes Lyra’s intervention specialist would “push in” and provide supplementary instruction to Lyra in the classroom. Other times Lyra would get “pulled out” and taken to her intervention specialist’s room for lessons.
Still, kindergarten in a classroom with one teacher and more than 20 students, many of whom had never attended preschool, was challenging. Lyra repeated kindergarten the next year and for the first time an aide was assigned to help her stay on task.
That seemed to be just what Lyra needed. The results of standardized tests conducted just after winter break of her second kindergarten year indicated Lyra was on track for the first grade the next fall.
Two months later, COVID hit and Akron Public Schools, like many urban school districts, went 100% remote for 12 months.
Last month, testing of K-12 students revealed that children nationwide regressed in math and reading during the pandemic. This is regardless of whether a child was in states like Texas or Florida, where public schools were mandated to reopen early in the pandemic, or in states like Ohio where the districts were allowed to remain closed for a year or more if they so chose.
That said, children on IEPs lost more ground than their friends without an IEP. Trying to have my then 8-year-old with an intellectual disability learn via a computer screen was absolute folly.
Lyra’s academic work ethic also regressed, which became readily apparent when Akron reopens its school buildings in March 2021.
Thus, at the recommendation of her school team, we agreed to have Lyra attend second grade in a multiple disability (MD) classroom (formerly called special-ed classrooms). MD classrooms do not follow the same Ohio curriculum as the general education classrooms and the longer a child is in an MD classroom, the more difficult it becomes for her to switch back.
Lyra’s experience was mixed. She relearned academics, and how to work in class and follow a structured day. But she was also one of the highest performers in a class where she was one of the youngest students. That is not a good thing. I felt as though I had failed my daughter.
Last spring, I asked Lyra’s IEP team about Akron Public Schools’ new SAIL program, which stands for Students Adapted Individualized Learning, and if she met the criteria for placement. SAIL students must be able to work in a general education classroom without being disruptive, which Lyra is.
Developed by Tammy Brady, the district’s special education director, SAIL is designed for the few students whose abilities fall betwixt and between MD classroom and cross-cat placements.
Currently, APS has five elementary and three middle school buildings with SAIL, serving children from across the district. Each elementary building has two SAIL classrooms divided by grades: one for kindergarten through second grade, the other for third through fifth grade. Each class can have a maximum of 10 students.
This fall, Lyra was placed in a third- through fifth-grade SAIL classroom at Resnik. At the end of each school day, her SAIL teacher sends an email telling us about Lyra’s day. For the first month, I teared up every time I read these daily reports.
Her teacher regularly comments on how hard Lyra is working, how well she is doing in math (she’s working with numbers in the thousands) and reading (she nails the third grade vocabulary). We also hear how well she’s interacting with other students in her general education and SAIL classrooms.
With the addition of SAIL classrooms, APS is more fully in line with the federal requirements of IDEA. Though a program still in its infancy, SAIL is showing great promise and is something the district can be proud of having developed.
As a society, we’ve come a long way since the days of my childhood, when I never saw people with intellectual or physical disabilities in the public schools I attended. By simply keeping beloved family members with intellectual disabilities at home and providing them with an appropriate education, today many of these people grow up to have full, and often independent, lives. As it should be.
With our daughter Lyra’s birth, we learned, among many things, the importance of language when discussing her diagnosis.
In my lifetime, using the word “retarded” to describe a person with Down syndrome has become entirely unacceptable. I understood this perhaps as early as the 1970s. However, I still used the word to describe nonhuman things that might frustrate me from computers to proposed legislation.
I had to work at it, but I have completely scrubbed the r-word out of my vocabulary. Why? Because it has become a put-down in all contexts with the original referent being people with Down syndrome. Though the word was never ideal, it was once commonly used, including by the very organizations that support people with DS.
The Arc is one of the oldest of these organizations. Until 1992 it was known as “ARC,” an acronym for “Association for Retarded Citizens.” Their website includes a thoughtful explanation of why the name was changed, and that today the only r-word to use when referring to people with intellectual disabilities is “Respect.”
Here in Ohio, each county had a “mental retardation and developmental disability” (MRDD) board until 2009 when they were all retitled “developmental disability” (DD) boards.
When Lyra was 2 years old, I reread an essay I had written soon after her birth. While waiting several days for Lyra’s chromosomes to be analyzed, I wanted her diagnosis to be mosaic Down syndrome, in which not all cells have a third 21st chromosome. Why? Because in those first days after an unexpected diagnosis, I hoped for Lyra to have “milder symptoms,” as though Down syndrome were an illness.
“Milder symptoms” is a legacy of the terms “mildly retarded” or “severely retarded.” Even today, books and articles concerning pregnancy and childbirth still sometimes use the language of illness, such as this example from a parenting website: “While everyone wishes for a healthy baby, you may have one with Down syndrome.” (Disability rights activists petitioned the publication and the language was eventually changed.)
Lyra, thankfully, is a robustly healthy child. While some children with Down syndrome have other health issues, to confuse a diagnosis of DS with poor health is as incorrect as confusing deafness or blindness as poor health.
Also important to all people living with any diagnosis is people-first language. Lyra is not a Down syndrome girl, she’s a 6-year-old girl, a kindergartner, a sister to her four brothers, and a lover of music, books, playgrounds and cats. The British cartoon “Peppa Pig” is Lyra’s favorite show, from which she’s learned to pronounce several words in the Queen’s English including “luh-vley” for “lovely.”
And Lyra has Down syndrome. She’s not a Down’s kid, she’s a kid. Just as any person with any diagnosis is a person, not a diagnosis.
Yet the first months of Lyra’s life, I stopped myself multiple times as the words “Down syndrome child” slipped past my lips. People-first language is so easy to understand. However, it took time for me to consistently apply a simple turn of a phrase that identified my daughter as a person, not as her diagnosis.
“They are all so sweet, people with Down syndrome.” I’ve heard this many times, particularly in the months after Lyra’s birth. While it is statistically true that higher percentages of people with Down syndrome claim being happy with their lives than the typical population, calling them “all so sweet” is a stereotype that denies the full range of human emotions in someone with DS.
And what can happen when someone does not behave in accordance with the stereotype ascribed by society? In January 2013, Ethan Saylor, 26, was killed when he did not behave like a sweet man with Down syndrome.
While his caretaker had stepped out to retrieve her car, Saylor, an ardent fan of law enforcement and the military, slipped back into the movie theater where he’d just seen “Zero Dark Thirty.” Because he’d not bought a second ticket, the theater manager alerted security officers, all off-duty sheriff’s deputies. Saylor’s caretaker returned just as the deputies arrived and warned them not to touch him because it would cause him to “freak out.”
Rather than listen to the person who knew him, the deputies dragged Saylor down to the side of the movie screen, just out of the sight of the audience. Because of his failure to buy a $12 ticket, Saylor was wrestled to the ground, his larynx was fractured and he died of asphyxiation. Rather than watching the movie, the audience listened to Saylor cry for his mommy in his last moments of life.
Until I was 46, I gave the disability rights movement little thought. Since Lyra’s birth, however, I think every day about the need for acceptance and inclusion of all people with disabilities in all facets of life. This includes medical care, education, employment, housing and relationships. It also includes freedom from harassment both in public and at home.
Acceptance is born from understanding and understanding is best gained by exposure. That is why October is National Down Syndrome Awareness Month — to introduce our communities to our loved ones with DS, who are often their own best advocates, and to dispel misinformation about what a DS diagnosis means.
Words matter. Choose yours with empathy. And when someone uses outmoded or inappropriate language, consider their intent. If someone is using the only language they’ve known to discuss Down syndrome, but they are doing so kindly, I welcome it as a teachable moment. For I, too, have had a long history of needing important matters, including the language of disability, pointed out to me.
This was first published in the Akron Beacon Journal on October 21, 2018.
Many families make flyers to send home with the classmates of their children with Down syndrome. I’ve seen several made by friends of ours, who helped us with ours.
Rather than wondering if Lyra has Down syndrome or why one student in the classroom receives extra assistance, a flyer gets in front of the proverbial bus. Information can dispel misunderstanding and fear and encourage acceptance.
Tomorrow is Lyra’s first day of kindergarten. She will be fully included in a general ed classroom with “push-ins” (assistants come into her classroom rather than pulling her out). There is not a single study that shows improvement for students who are in segregated classrooms based upon disability.
Furthermore, not only do typical students who grow up with a classmate with an intellectual disability become normalized to diversity, they, too, also benefit academically from inclusion.
Whoopsie Piggle can be found on “Down syndrome Blogs,” a site that aggregates Down syndrome blogs by category. One of the categories where Whoopsie Piggle is listed is “Dual Diagnosis” because Lyra was born with congenital cataracts in both of her eyes. Since her birth, the idea of my child being blind has been far more worrisome for me than her diagnosis of Down syndrome and while I hope this essay appeals to a variety of readers, I most wish to share what we have learned with parents of children who have both Down syndrome and vision impairment issues.
This past fall I finally gave up. And when I did, my relief surprised me.
“You know, even in kids without Down syndrome, somewhere between 18 months and four years old they typically stop tolerating contacts,” said Lyra’s ophthalmologist more than a year earlier when we started having problems keeping contacts in Lyra’s eyes. When she was a baby the same doctor had said that he would prefer to keep Lyra in contacts for as long as she tolerated them. The word “tolerate” when used in a medical setting sounds like a biological event over which there is little control, such as when organ transplants are tolerated or rejected by the recipient’s body. But in the case of contact lenses “tolerate” is a euphemism referring to behavior.
Lyra began wearing contact lenses when she was six weeks old. Because she was born with cataracts in both eyes, her natural lenses were surgically removed. Unlike when an adult has cataract surgery, however, synthetic lenses were not swapped in where the natural lenses had been removed. That’s because Lyra’s eyes continued to grow for at least another year after her surgeries. When her eyes were done growing, transplants were theoretically an option, which one of the younger doctors in the ophthalmology practice suggested.
“Young doctors love to operate,” said Lyra’s surgeon, who is the head of the practice, “but when you get older you recognize it is sometimes better to wait. Now if she comes to me at eighteen and says she wants implants, I’ll do them. But if she can do fine with contacts, it’s better to wait.” I agree for three important reasons: First of all, intraocular transplant surgeries in children under the age of five have far more complications, resulting in additional eye surgeries up to 72% of the time. Secondly, accurately determining what strength to give a surgically implanted lens on a child who is preliterate and unable to perform the typical acuity tests (Which one is clearer? A or B?) is never ideal, and, finally, I believe by the time Lyra is eighteen the field of intraocular lens transplantation will only have improved, perhaps significantly.
But back to tolerating contacts. The first two years Lyra wore them, I occasionally found one of her eyes nakedly free of any contact. Usually when this happened, the lens was ready to be replaced, which we did with the staff at the ophthalmologist’s office every three to four months. A new lens is shiny and clear, but over time protein accumulates, dulling the surface. I’m sure as they get dirtier, the contacts are less comfortable and I was not surprised when Lyra rubbed them out from time to time. This started happening more frequently after Lyra’s second birthday. Then this past spring, a few months before Lyra turned three, the pollen count rocketed higher than in most years. Lyra and everyone else in the house became sneezing snot buckets. Contacts disappeared weekly and at roughly $150 per lens, replacing them is not something to sneeze at. “It’s time,” said the doctor, “she’s spending too much time wearing only one lens and it’s too stressful putting new ones in this often.”
Two things in Lyra’s life have never been easy and have only gotten harder as she’s become bigger and stronger: quarterly blood draws to monitor her thyroid levels and contact lens changes. When she was a baby, I sat with Lyra on top of my legs with her head on my knees as one nurse put the speculum in her eye while the other one removed her old lens and put in a new one. The speculum was always necessary because Lyra clamped her little eyelids closed so tightly it was impossible to keep them open using fingers alone. When she was larger, I held Lyra sideways in my lap while one nurse held her head, another operated the speculum and a fourth nurse conducted the lens change. Always, Lyra screamed herself hoarse and became slippery with sweat. After doing this weekly for a month I lost all determination to keep her in contacts.
“Many kids love glasses and stay in them for years,” said the doctor when they removed her final contact lens. Even though there was only one lens to remove, afterwards Lyra remained upset and refused to wear her new glasses in the doctor’s office, wanting nobody and nothing near her eyes. I tried again later that day when we were home and she promptly pulled them off her head and flung them across the room. Now what? I fretted. She can’t go around with absolutely no correction. Her prescription is +19 in one eye and +20 in the other, qualifying her as legally blind (for comparison, I am quite nearsighted and my prescription is -3.75 and -4). I contacted the vision impairment specialist who used to come to our house with Lyra’s county caseworker. She sent me a list of tips for getting kids to wear their glasses, which assumed you could get them on the kid in the first place. I went to bed that night believing we might need implant surgery after all.
The next morning when I got up and went to the kitchen for coffee, Max was sitting at the table. “Look at Lyra,” he said. Because she sits at the end of the table, her back was toward me when I entered the kitchen. I came around and there she was, wearing her glasses while eating her breakfast. With the exception of the following day when she hid them in a pot inside the oven of her toy kitchen, Lyra has willingly worn her glasses ever since. In fact, when she gets up in the morning she often says, “Hi! I want axes.” Which is how she pronounces “glasses.”
Why was I so resistant to abandon contact lenses? What I told myself was that Lyra would not be able to see as well in glasses as she could in contacts. For anyone who has worn both glasses and contact lenses, it is often the case that contacts give a more precise, if not significant, correction. In part because the lens is directly on the eye and not a few centimeters away. But it was Max who hit on the larger reason. Max, who took Lyra’s diagnoses in stride since the very beginning and never grieved over Lyra’s Down syndrome because, as he told me, he just loves her so much as she is. That hasn’t changed, but with fierce love comes the desire to protect. “I wish she didn’t have to wear glasses because it’s one more thing that identifies her as different,” he said to me about a week after Lyra switched to glasses.
Though variation is substantial, people with Down syndrome, unlike other conditions, bear identifiable physical features. Chief among them are almond-shaped eyes due to epicanthal folds of the upper eyelids and flatter facial profiles. In the morning when she sits on my dresser in front of the mirror where I brush her long blonde hair, Lyra looks glamorous. But she cannot work with hair in her face and she cannot see without her glasses. Once her hair is smoothly secured in colorful elastic bands, I place her glasses over her head and around her neck like a necklace, then pull her hair over the safety band that connects the stems. Quickly Lyra grabs the frames and perfectly positions them on her face. “Hi!” she then says every time, looking me in the eyes.
Her glasses are so thick they feel almost like marbles when I rub them clean with soap and water, as I do many times a day. In contact lenses, Lyra often squinted, making her eyes look small. The magnification of her glasses is so powerful her eyes appear owlishly big, drawing attention to her face. Her vision impairment is now as patently obvious as her Down syndrome. More than before, in public people comment on how cute Lyra is. Like three-year-old boys in ties and sports coats, glasses on such a small girl looks endearingly adult. But what happens when Lyra is a teenager and, later, a woman? I have long felt more at ease with Lyra having Down syndrome than I do with her vision issues. And here’s why–Lyra is healthy, a social extrovert and very bright. Understanding that Down syndrome effects cognition, at three-and-a-half years old Lyra is no longer an enigma. She will do well in life with the right support, which we give her and will do so for as long as we can. Beyond us, Lyra is blessed with four adoring brothers whom I have no doubt will look out for their sister when Max and I are dead. (It happens and we don’t pussyfoot around in talking about it.) But my daughter as someone who is legally blind? What that means long term is not so clear.
In Ohio, services are provided at the home by the state, through the county of residence, until a child is three years old. Then the child is eligible for public preschool and it is there that services continue. Lyra is fortunate to have as her classroom teacher a vision impairment specialist. We have long heard that children with Down syndrome have strong visual memory but after raising two kids with severe dyslexia, I was not expecting Lyra to read before five as do many other children with Down syndrome, including our pediatrician’s daughter. Yet today Lyra recognizes and verbally identifies almost the entire alphabet, numbers one through nine, and at least five colors. For now, the letters and numbers she looks at are quite large, certainly not as small as the print in a typical children’s book, which leads to what comes next. When we recently saw Lyra’s ophthalmologist for the first time since her last contact lens was removed he was thrilled with her vision and said, “Somewhere between 12 and 18 months from now we will make the switch to bifocals. I want to wait a while because it’s a difficult transition, the kids fall a lot and it takes a while.” On the other hand, he also told me it would take two to three weeks for Lyra to adjust to glasses and that only took 24 hours.
Meanwhile, Lyra’s teacher is exposing her to braille and signed her up with a non-profit that sends us braille books every few months. The ones that are typical toddler books with clear braille stickers overlaid upon the text we keep at home. Others are simply white 8.5 x 11 pages covered with bumpy dots. We put those in Lyra’s backpack and send them to her teacher.
Like so many changes resisted in life due to fear of the unknown, I wish we had switched to glasses sooner than we did. We would have saved Lyra several traumatic contact lens changes. She still drops to the ground in an unfamiliar setting if she is unable to discern the topography of the ground or floor but otherwise seems to see as well as most other three year olds. An added benefit is her glasses have transition lenses, meaning they get dark when exposed to sunlight. In contacts, I could never get Lyra to “tolerate” sunglasses. Now sunglasses are just part of the package and she looks pretty cool.
Two years ago when Max and I attended our first National Down Syndrome Congress (NDSC) convention, Lyra was 11 months old and I was panicky. I felt we had a small window to engage her mind, teach her body to move optimally, and lay the groundwork for speech intelligibility. We left our first convention with lots of information and a plastic box from Talk Tools filled with straws, horns and bite sticks. Once home, we promptly bought a tumbling mat for gross motor exercises and began weekly sessions of physical, occupational and speech therapies at Akron Children’s Hospital. Because of these and other early interventions I have (mostly) abandoned my fears over what we may have missed.
Now three years old, Lyra walks, talks, feeds herself, helps get dressed, is potty training and does most everything expected of a preschooler. Meanwhile, Max and I have largely hurdled our Down syndrome learning curve by reading books, meeting doctors and therapists, attending programs, and getting to know other families. But just as important is Lyra herself. Not only can we now see the relative impact Down syndrome has on her abilities (not so much as we thought on the day she was born), but over the past three years, her personality has unfurled—she’s plucky, sweet and, yes, smart. Lyra is our music-loving, temper-throwing, messy-eating girl. She adores her brothers, her dogs and her cats and refers to each by name. She loves going to preschool and daycare but fights like a greased monkey when getting her contact lenses changed, her blood drawn or her teeth brushed. A daddy’s girl, she cries when Max leaves for work and eats all her food when he sits next to her at the table after defiantly refusing to try a bite for me.
Lyra is not Down syndrome; Lyra is fully human. A human who has Down syndrome.
The Long View
As our focus on Lyra shifts away from the acquisition of basic life skills, the only therapy she needs, for now, is speech. We confirmed this in Phoenix this past summer at the NDSC convention. For three years in a row physical therapist Pat Winders has evaluated Lyra’s gross motor skills at the convention. This year Lyra walked and ran for Ms. Winders, both in her braces (and shoes) and barefoot. “She’s doing great!” said Ms. Winders. “Her heels look straight, her feet are bending and her thighs are moving behind her as she strides. Keep her in Sure Step braces for a couple more years and then switch to an orthotic insert like Chipmunks. Remember, we don’t want our kids in physical therapy forever, she’s doing everything she should right now.” (Whew!)
As we explore educational options for Lyra and how we might advocate for her, we are no longer panicked. Currently she is thriving in preschool, and there is time to research what comes next. After three years of what sometimes felt like a graduate program on Down syndrome and early interventions, we can now look up and consider the long view of life for Lyra. And there is no better place to observe what her life as an adult might be like than at the NDSC convention.
Down Syndrome Self-Advocates
“Oh, look, there’s Aaron!” I said to Max. After a leisurely breakfast on the opening day of this year’s convention, we walked to the hotel hallway reserved for the self-advocates’ events, which include elections to the NDSC board. Each year we are greeted by Aaron who introduces himself, shakes our hands and asks that we help him get elected.
For you see, as much as the annual NDSC convention is a place for parents of children (of all ages) with Down syndrome to gain valuable information and make meaningful connections with other families, the convention is equally significant for teens and adults who have Down syndrome. The NDSC’s mission is to improve the world for people with Down syndrome through an organized collaboration of families of people with Down syndrome, the communities in which they live and, importantly, self-advocates. And their board of directors reflects this composition. Each annual convention has rooms dedicated to the board elections and self-advocate committees.
“How old do you have to be in order to vote in board elections, Aaron?” I asked, wondering when Lyra could participate. Aaron did not know so we approached a young couple walking toward us with supplies to decorate a table. Like so many self-advocates at the convention, they promptly introduced themselves. The four of us chatted about where we were all from when suddenly the woman poked the man’s side with a shrink-wrapped package of cardboard containers. “Don’t just stand there talking, help me open these,” she said teasingly. Both in their twenties, neither could remember when they first participated in the NDSC elections as they have been voting for many years.
We turned to a delicate woman working on a nearby table, her salt and pepper hair swept up in a Gibson Girl bouffant. “I don’t know remember when they can first vote, it’s been so long ago for my son, maybe fifteen?” She said and then asked, “How old is your daughter? Three? Are you working on speech? It is so important to work on speech. Have you met my Tony? You haven’t? It seems like everyone knows my Tony. He’s 27. Oh, you must meet him, where is he? Well, I’m sure we’ll run into each other again and I’ll introduce you.” We ran into Tony’s mom repeatedly over the next three days, but never managed to meet Tony. He was always off with his friends squeezing the most out of a weekend where Down syndrome is the rule, not the exception.
Seeing Myself in Sarah
What was once new is now familiar. After leaving the self-advocates’ hallway, we walked to the exhibit hall to find our friends. We hugged the founders of Down Syndrome Diagnosis Network, an organization that does such important work nationwide it is hard to imagine it has been in existence only a few short years. From DSDN we went to another young non-profit named for the daughter of founders Tim and Liz Planchta. Ruby’s Rainbow grants scholarships to people with Down syndrome for post-secondary education, whether it be college, job training or enrichment programs. Once unheard of, post-secondary education is becoming as common an expectation for people with Down syndrome as it is for all high school graduates, and with good cause. Many adults with Down syndrome are living independently and post-secondary education maximizes their employment options (um, you know, like it does for everyone). I regularly hear from adults with Down syndrome how important it is to them to be productive members of their communities.
After visiting friends, Max and I strolled through the exhibit hall. Writer Sarah Savage Cooley was selling her books at a table. In Of Love & LossPoetry or Tears? she uses poetry to tell her story of falling in love, getting married, difficulties, divorce, and continued feelings of loss post-divorce. Writers commonly process major challenges in life, like divorce, by writing about them (I wrote a 300-page book about the end of my marriage). Ms. Cooley, who has Down syndrome, is no different. But it was The Selected Essays of Sarah Savage Cooley that rooted me to the floor in front her table. In “Following My Dreams,” she rails against her treatment as a child in a special education program:
When I was going to school I was normal like everyone else, but I was put into special education to get special help. Wherever I went I had an aide in each class. I am a hard worker, wanted to be independent. Instead I had an aide who helped me with the class work, the aides talked to the teachers. I even had special homework assignments. I always left the classroom with the aide for special help. I wanted to stay in the classroom to do regular classroom assignments like everyone else…When I had an aide in each class I felt so uncomfortable. I wanted to be an individual who goes to high school with her friends, goes to classes. But in each class I went to there was an aide who was with me, who didn’t want me to have my own space.
In “Found Out What My Future Will Be,” Sarah describes her frustration over the job she has instead of the career she wants:
I just wish everyone could stop treating me special and let me grow up and go my own way in my life and let me focus on my dream… It’s important for me to become a book author. That’s all I ever wanted to be in my life, and it’s the one thing I want to do for my future…I wasn’t planning on working at the Disabilities Rights Center for the rest of my life…I want to be in one place that I love, to go to college, study writing, work at a place of my dreams that comes true for me, be who I want to be, become a book author, and explore the world around me.
“You know, Sarah,” I said as I closed her book, “I am a writer and all I want to do is work on my book. But I have another job because I need to make money.”
“Me too!” she said, looking up at me through her wire-rimmed glasses, “All I want to do is write my book!”
We bought two of Sarah’s books, signed for Lyra. Moments later, we met a medical fellow from the Thomas Center for Down Syndrome at Cincinnati Children’s Hospital who researches depression in people with Down syndrome. I told him he should meet Sarah Cooley and read her books, poignant writing about the interior life of a person with Down syndrome. “Oh, I know her work,” the young doctor told me. “It’s required reading at the Thomas Center.”
I am writing a book on Down syndrome for people who do not know someone with Down syndrome because I want to eradicate the misperceptions of what it means to have three twenty-first chromosomes. Sarah Savage Cooley, using the same means of expression as me, the written word, has achieved this. Her books, in the hands of those who guide the research on and the care of people with Down syndrome, are changing perceptions. Sarah’s life has not always been easy, but she’s channeled her misery and frustration into her craft, thereby positively affecting the lives of countless people she will never meet. There is not much more a writer can hope to achieve.
Wait, Was That Who I Think It Was?
I think I saw Don’t Limit Me Megan!I texted to one of my oldest friends, Mariko.
Huh?She wrote back.
The video you sent me, girl with DS talking in classroom!
On my way to the ladies room, a young woman with long dark hair glided by me in a linen dress with black piping. Several minutes later it clicked: That was Megan Bomgaars! Many months earlier Mariko, who has a niece with Down syndrome, sent me Ms. Bomgaars’ YouTube video, “Don’t Limit Me,” which reminds me of my parenting mantra: “Push and support.”
All children have limited power in society and need adults to advocate on their behalf. I have done so for each of my five children. But children are not pets or, as Bomgaars says in her video, mascots. In her video, Bomgaars underscores the importance of holding the same high, but not impossible, standards for my daughter with Down syndrome as I do for my other children while also supporting her when necessary, which for Bomgaars included a school aide. (Yep, people with Down syndrome are not a monolithic group and can have different opinions.) Every educator should watch “Don’t Limit Me” and listen to woman with Down syndrome insightfully describe what is needed when educating children with Down syndrome.
The Awesome Tim Harris
Parents at the NDSC convention often reminisce about the self-advocate keynote speakers they have heard over the years, which I attribute to two things: One, these keynote speakers are first-hand, living examples of people with Down syndrome leading rich, full lives. Secondly, in a weekend mostly spent listening to the trained experts on Down syndrome, including health care professionals, educators, researchers or lawyers, it is as important and so rewarding to listen to the true experts on Down syndrome: Adults with Down syndrome.
I arrived in the grand ballroom just as restaurateur Tim Harris danced onstage to Pharrell Williams’ song “Happy.” Speaking to over a thousand people, Harris was as commanding and infectious a keynote speaker as I have heard at any conference or convention, including those not related to Down syndrome. Here are a few snippets from his speech:
I am Tim Harris, I’m 29 years old and I am living my dreams! When I say “Oh, yeah!” you say, “Oh, yeah!”
Oh yeah! (Tim Harris)
Oh, yeah! (Audience)
I serve great food and lots of hugs. I have hugged over 70,000 people. The world needs more hugs. I’m doing my part, are you doing yours? Stand up and hug the people next to you!
Believe in yourself. Fifteen years ago, Tim’s Place was only an idea. Today, it’s a tourist destination.
People ask me and my family advice and I did what any awesome person would do: I started a non-profit, Tim’s Big Heart Foundation, to help other people with disabilities start their businesses. Matt Cottle is here tonight to tell you about the bakery he started with the grant he got from my foundation.
(Mr. Cottle, who has autism, stepped up to the podium and spoke with the deadpan delivery of comedian Steven Wright as he described the hundreds of scones and other pastries his parents patiently let him produce in their house as he mastered baking. On the website for his business, The Stuttering King Bakery, Mr. Cottle points out that 91% of adults with autism are unemployed and his mission is “to impact the autistic world and serve as an inspiration for other autistic people to be productive, active members of the community.” Mr. Cottle hopes to one day open a brick-and-mortar bakery where he will employ others who have autism.)
I want to thank not only Matt for opening his bakery, but his family for supporting him and his dreams. (Mr. Cottle returned to his seat with his family.)
I am a superhero. My super power is love.
Be the light. When I was born, people told my parents they were very, very sorry I had Down syndrome. I guess they didn’t know how awesome I’d be. I’m sure it was scary for my parents but they always saw the light in me.
Use your light to help others. Everyone can be awesome.
Meeting Mr. Awesome
On the last day of the convention, I ran into a man in the lobby as I was turning with Lyra in my arms.
“Are you Tim Harris?” I asked.
“I’m Tim,” he said.
“You gave such a great talk the other night!” I told him.
“Thank you. But, but, tell me, is this your daughter? Do you know she is awesome? She is going to grow up and do awesome things and my foundation is going to give her a grant to follow her dreams. Don’t ever forget she is awesome!” And then he was gone, ushered out by his family who, perhaps more than everyone else, struggled to stay on schedule.
“You know, I heard he didn’t used to be so good at talking with people, that his success has really propelled him into everything he is now,” said one of our friends when I told him Lyra and I had just met Tim Harris.
It’s an upward spiral: the more Tim Harris accomplishes, the more he can accomplish. Do people like Tim Harris, Megan Bomgaars and Sarah Savage Cooley have the support of their families and friends? Certainly. But is that not true of most, if not all, people leading genuinely successful lives? Imagine, however, if their parents had believed that a child with Down syndrome would not read, write, do math—let alone write books, make films, own restaurants and start foundations? Sadly, that misconception is still widely held among people who do not know someone with Down syndrome and even a few who do. Yet these three adults and others with Down syndrome are not only succeeding personally, it is far from hyperbole to say that they are making the world a better place for others. Who among us can say the same?
Just as Lyra teaches us at home, these adult self-advocates teach me more than any session I have attended at the NDSC convention. When I talk with someone like Sarah Cooley or watch Megan Bomgaars’ video or listen to Tim Harris speak, I am inspired by them to live my life better, fuller and kinder. They are models not just for what my daughter can aspire to become, but what I can aspire to become too.
In case you missed it on the Whoopsie Piggle Facebook wall, here is the meme created with the help of my friends, photographer Shane Wynn and text-adding queen Tiffany Stafford. Since October 1, just five days ago, it has been seen by more than 70,000 people and shared countless times.
We created this meme as part of our contribution to Down Syndrome Awareness Month in the United States, which is every October. But all year we encourage everyone to use “people-first” language. Lyra has Down syndrome, she is not Down syndrome. What seems a minor shift in speech has enormous impact on how people with disabilities are viewed and treated.
It has been a year since I wrote “A Painful Week in the Down Syndrome Community,” about three toddlers who died. Two left suddenly: a boy who contracted meningitis, unrelated to his Down syndrome, and a girl who suffered complications from a second heart surgery. Both of their families have created non-profits in honor of their children, T21 Ryder’s Foundation and Fiona’s Hope Totes. The third baby, Annie Wojtowicz, died slowly of heart failure in the arms of her family.
I learned of Annie two weeks before she died while I was preparing to travel in Europe with my eldest son. I cried every day as I watched, via Facebook, this small girl grow weaker, her face more swollen, her eyelids red and puffy. My children asked me why I kept returning to Annie’s Facebook page when it made me so sad, they told me to stop, but I couldn’t. In her and her family I saw Lyra and our family, two daughters with Down syndrome born months apart, both with dual diagnoses, but only one of which was fatal. Annie died a year ago today and her family has shared their grief with the world on her page, Annie Golden Heart. In the days after Annie died the page was taken down, but then it returned and many people, including myself, continue to follow Annie’s family. As I traveled Spain with my son, I carried with me these three families while on Annie’s page I saw her funeral, her freshly covered grave, the unbearable sorrow in her parents’ eyes. I lit candles at every La Pieta station we found at every church we visited.
On Father’s Day 2014, Ryder and Fiona were only days gone while Annie had but three days left to live. The day before, I cashiered at World Market, where I work a handful of hours each week. It was busy, as it often is the day before a holiday, with people buying last-minute gifts and I felt cheerfully distracted from the sorrowful week. Then a woman my age bought a Father’s Day card with a photo of a child’s tiny bare feet atop a pair of leather oxfords, clearly dancing with her daddy. Tears suddenly rolled down my cheeks.
“I’m so sorry,” I said to the customer. “My daughter has Down syndrome and there have been babies her age who have died this week. Your card makes me think of their families.” People who have a relative with Down syndrome often speak of the uncanny coincidences that are seemingly commonplace in this community.
“I had a sister with Down syndrome who died when she was a baby because they couldn’t fix her heart back then,” said the customer as she held my eyes with her own. “My parents never got over losing her.”
Grief is a foreign country that makes citizens of all who travel there. Only previous visitors can fully understand the experience of those who find themselves suddenly dropped in the place that changes everything forever. While the only way through grief is to grieve, no two journeys are the same. But often the loss of a child is described as the most intense grief. The natural order calls for children to bury their parents, not for parents to bury their children.
In the year since these three children died all in one week, several other babies have gone too. The stories of children succumbing, often to heart or respiratory conditions, are shared and then these families disappear from the closed Facebook groups concerning Down syndrome. Our pediatrician, Dr. M., whose own daughter has Down syndrome, gave me a big hug in her office last summer. “I can’t do Facebook groups because I see so much loss just practicing medicine. We can each handle only so much.” Annie’s family continues to openly share their process and in so doing are, for me at least, something of a proxy for all those who have lost a child with Down syndrome this past year. Her parents and sisters regularly visit and decorate her gravesite and when the groundskeepers clear off the toys and tchotchkes, it exacerbates the pain of having had Annie herself taken from them. It seems to me that cemeteries should have special allowances for the decorating of children’s graves, particularly in the first year after the child has died.
Last August bioethicist Richard Dawkins tweeted to an expectant mother who asked him what she should do if her fetus was diagnosed with Down syndrome, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later claimed his position was humane as seeking to avoid suffering. The response was terrific. Articles appeared in places like the New York Times questioning the use of the term “suffering” as it relates to having a child with Down syndrome given the significant scientific research that proves just the opposite, something I, too, wrote about in “What Suffering? The Down Syndrome Advantage.” People with Down syndrome are overwhelmingly happy with their lives, their parents’ marriages are stronger than the national average (based upon divorce rates) and most siblings cite having a brother or sister with Down syndrome as a highly positive experience.
Annie’s family has observably suffered. The other families who have lost children with Down syndrome understandably, if not privately, have suffered too. At times, Annie’s father has posted a depth of suffering that is concerning. Suffering that is so great because the love is so deep.
Today, it turns out, is also an anniversary of a different kind. It is the fifth birthday of a little boy with Down syndrome in our local community. In a post that includes several pictures of the two of them together, his father writes, “Thanks for helping find my why, buddy!”
With any child comes the risk of unimagined suffering. But also the greater likelihood of immeasurable love and joy.
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.)
As you all probably know, it is more likely for a woman my age (46 when I had my daughter Lyra) to have a baby with Down syndrome than it is for those of you in your twenties or thirties. But because more women are having babies in their twenties and thirties than in their forties, most children with Down syndrome are born to you younger mamas (even now as more women in their forties are having babies than ever before). This explains why I have so many Facebook friends who are ten, fifteen, twenty or more years younger than me. We are all mothers of little ones with Down syndrome.
You younger mamas inspire me. In the two years since my daughter Lyra was born, many of you have created non-profits with valiant missions: to educate medical professionals about Down syndrome, to support families who have children with Down syndrome, to reach out and help families with medically fragile children both with and without Down syndrome. But mostly you mamas ask questions of each other, using this tool of your generation, the Internet, to find support and guidance as we all navigate the stages and attendant issues of raising children with Down syndrome.
Your passion for your children reverberates in your posts and pictures. Any one of you would bare-knuckle your way up weather-worn peaks or ford valley rivers rushing with spring snow melts to find what your children need and implement what you’ve determined makes sense for them and your families. You also get mad, furious sometimes, when someone says something that seems, if not hurtful, then downright tone deaf. And, yet, time and again, you calmly respond to comments and questions that I know upset you. You give accurate information but, more importantly, you share your stories and the stories of your children. And in these exchanges, as much as it may sound like hyperbole, you are changing the world for our children.
I, as a mother of a child with Down syndrome, am guilty of saying the very things that so upset you and I offer you not an excuse, but an explanation. You are right, language is very important. I raised all of my children to know that there are police officers, fire fighters and mail carriers even though I did not grow up in an environment that was thoughtful about much of anything, let alone language. As a young woman, particularly after I finally enrolled in college at age 21, I recognized the subtle, yet potent, harm caused by sexist language and eschewed it from my own speech. In my twenties, I caught on quickly. All people, regardless of gender, race, religious beliefs, sexual orientation, national origin or age, should be treated as the full human beings they are and given equal opportunities to participate in society. That they are not has motivated most, if not all, of my political activism for nearly 30 years. Yet a fool I may well be because until I was 46 and held my infant daughter, I had not considered language as it relates to Down syndrome. It had to be directly pointed out to me.
The first or second time I met with our local support group, I recall stopping myself as I said to the coordinator “Down syndrome child.” I apologized and she graciously told me not to worry. People-first language, i.e. a person who has Down syndrome as opposed to a Down syndrome person, is so easy to understand. However, this took a few weeks for me to consistently remember and apply a simple turn of a phrase that identified my daughter as a person, not her condition. Lyra was probably three months old before I had habituated people-first language in my speech.
A few months after Lyra was born I wrote the essay, “Learning About Lyra,” describing how we learned of her diagnosis only after she was born. I reread my essay a few months ago and realized I had used the word “healthy” in opposition to a Down syndrome diagnosis. Lyra, thankfully, is one of the most robustly healthy babies I know. To confuse a diagnosis of Down syndrome with poor health is incorrect. But books and articles concerning pregnancy and childbirth still make that mistake. You young mamas recently rallied a national parenting magazine to remove language from an article that referred to expectant mothers “wishing for a healthy baby but maybe having one with Down syndrome.” Lyra taught me, simply by being the baby in our house, that the word “healthy” used in opposition to Down syndrome makes no sense, which is why I removed it from my essay.
But because the essays in Whoopsie Piggle are about our journey, I did not remove from that essay my covert wish in the first days of Lyra’s life that she test positive for mosaic Down syndrome because of the possibility of “milder symptoms.” It’s a simple phrase that most people wouldn’t notice, but one I would not use today because, again, it connotes illness. I might instead state that my desire for mosaic Downs was implanted by the hope that, in the wide range of abilities children with Down syndrome have, my child would have the highest level of abilities possible. Part of that was my very real grief at the diagnosis, a grief most parents go through only to discover the child they have is perfect because he or she is a real child who is as lovable and as frustrating as any other child.
“Milder symptoms” is a legacy of the terms “mildly retarded” or “severely retarded” and, as harsh as those words sound in our ears today, they were once widely used phrases, certainly as I was growing up and, notably, in much of my adulthood. Consider, for example, that until 1992, The Arc, one of the oldest American organizations supporting parents of children with Down syndrome as well as the children themselves, had the word “retarded” as part of its name. Their website has a thoughtful explanation of how their name changed over time and why it no longer includes the word “retarded.” Closer to home, it was just five years ago, in October of 2009, that the State of Ohio and all its counties were required to remove the word “mental retardation” from any governmental agency or board. Around the City of Akron, billboards went up stating that Summit County MRDD was becoming Summit County DD. That was just five years ago.
If you are 25 years old, five years is pretty much all of your adult life. But at nearly 50 years old, well, things that happened five years ago seem on par with things that happened last month, it’s all so recent. I cannot recall when I no longer thought it was acceptable to refer to a person with Down syndrome as “retarded,” and assume it was after my dad and stepmom began working in a group home in the 1980s. But it wasn’t until a few months after Lyra’s birth, while listening to a performance by comedian Rob Snow at an event for new parents of children with Down syndrome, that I understood that the word “retarded” is an unacceptable pejorative in any sentence. Again, once pointed out, I absolutely agreed. However, as embarrassing as it is, I have since caught myself on two occasions saying “retarded,” once referring to a cash register where I work and the second time referring to myself when talking with, of all people, Lyra’s occupational therapist. When I did, I immediately slapped my hand over my mouth in horror as though I’d just burped up a vile part of myself. Please, understand, young mamas, rewiring brain pathways is a process, especially the older and more calcified the brain. Yes, I believe everyone needs to recognize the hurtfulness of this and other derogatory words and make every effort to change and all of us can do so—it’s just that some of us have to unlearn habits that younger folks thankfully never learned.
So back to those people who use inappropriate words to talk about Down syndrome or your child. If they are asking questions with earnest curiosity, please continue to listen to the heartfelt intentions over the deeply flawed words. For those of us over forty, few of us had positive opportunities to know people with Down syndrome when we were growing up. If we ask a sincere question with clumsy or even hurtful words, gently point out to us how other words are more precise and not hurtful.
Sometimes all you need to do is listen.
There is a woman who is very important in our lives. Just a year older than I am, she tells me Lyra was put in her life to teach her about Down syndrome. “There was this mongoloid boy in my neighborhood,” our friend said to me when Lyra was still an infant. She then paused and looked over at me uncomfortably, “that’s what we called him.” She had brought him up to tell me a story about finding him alone, at age three, sitting on the street curb, partially dressed. She had not thought of him in years, perhaps even decades. But when she spoke of him, the word she had always used for that boy popped out, as though attached by mortar. I did not have to tell her the the once commonplace word “mongoloid” was wrong both for people with Down syndrome and people from Central Asia. When she heard the word come out of her mouth, I did not have to say a word. In an instant our friend witnessed for herself that word’s impropriety and knew she would never abide anyone calling Lyra “a mongoloid girl.”
More recently this same woman told me, “When I was in college, I worked with these young women who were retarded, they didn’t have Down syndrome, but they were, you know,” and she paused, not knowing how else to describe the condition these women had, before awkwardly saying, “retarded.” She was in tears recalling how these women had been treated. I told her the women were what we now call developmentally disabled, and she said, “Oh! Okay, developmentally disabled.” Our friend does not tell me these stories in order for me to correct her language, she tells me because in knowing and loving Lyra, she sees how unfairly people were treated whom she knew decades ago. And that she bore witness to their treatment and did nothing about it is cringingly painful to her, even though her complacency was based upon her understanding at the time. She did not know what she knows now. Motivated by a compassionate curiosity to discuss Down syndrome using the only language she had known, our conversations have changed the words she uses just as knowing Lyra has changed her understanding of Down syndrome.
The hardest comment to respond to is, in my opinion, They are all so sweet, these children with Down syndrome. This monolithic categorization is a stereotype that denies the full range of human emotions, as well as the expression of those emotions, in people with Down syndrome. And while it is statistically true that higher percentages of people with Down syndrome claim being happier with their lives than the typical population, calling them “all so sweet” is simply a stereotype. What happens when someone does not behave in accordance with the stereotype they have been labelled by the dominant members of society? In January of 2013, three sheriff’s deputies in Maryland brutally murdered 26-year-old Ethan Saylor over a movie ticket when he did not behave like a “sweet man with Down syndrome.” But now I am just preaching to the choir. You mamas know this story, and too many others like it. It is our shared fear that one day this and other widely held misconceptions of what it means to have Down syndrome will cause our children to suffer and possibly irrevocable harm.
NPR’s Ted Radio Hour had an installment on stereotypes in which the last two pieces, while both about racial stereotypes, could just as easily have been about Down syndrome stereotypes. Jamilla Lysicott compares complimenting a black person for being articulate to complementing an elderly person for being lucid. I can easily imagine a person with Down syndrome being “complimented” for being both articulate and lucid. Paul Bloom digs into the history, the science even, of stereotypes. We know, he says, not to ask a toddler for directions or an elderly person to help us move heavy furniture. Those are both stereotypes that are usefully accurate as they have been developed over the entire span of human existence. Not so with racial stereotypes, which are far more recent in human history (until a few thousand years ago, people stayed put with their own kind), and wildly inaccurate. The solution to breaking down harmful stereotypes? Not surprisingly, it’s meeting individuals from the group being stereotyped.
And that’s where we come in, mamas, and papas too, of children with Down syndrome, we all have a duty to educate those who do not understand Down syndrome, changing societal perceptions one-by-one. Look, if a world-renowned researcher like Richard Dawkins can be wildly ignorant of the facts of Down syndrome in this day and age, most of us “regular folks” deserve a pass for our ignorance and a hand up in becoming informed. Please take advantage of every opportunity to share what you know, even when queried with bumbling and outdated language. Continue to hear the intentions over the poorly-worded questions. A few short years ago, the person asking the poorly-worded questions could have been me. And, as hard as it might be to believe, in a few years that person may be you as our society continues to evolve past where we are now. Or, as my very well-read, open-hearted grandmother once told me when she was in her seventies, “The more I know, the more I realize I don’t know.”
Thank you, Mamas, I am continually grateful to walk on this journey with all of you.
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.
Sarah and I were in Pittsburgh for Quilt Market where we stayed at the downtown Westin. When the elevator stopped on our floor there was a man dressed in business attire already on it. I looked over at him and could see tears welling in his eyes. By the time we got to the second floor to get off, the tears were rolling down his checks. My first impression was maybe he just got fired from his job. Then I thought maybe he was in town for a funeral. As Sarah and I walked off, he came over to us and asked if he could share something. He could barely get the words out but managed to tell me that he and his wife had been expecting their fourth child, a girl, and they knew she had Down syndrome but his wife miscarried three weeks ago. My natural reaction was to give him a hug and tell him how sorry I was. His reply brought tears to my eyes, too. He said, “Thank you for saying that. Everyone else is telling us it was the best thing that could have happened. I see your daughter and she is beautiful.” I was at a loss for words so I gave him another hug and then we went our separate ways. But I thought about that interaction all weekend. Why are people so afraid of Down syndrome that they would tell a grieving family it was for the best? ~A post in my Facebook feed this past spring.
My essays on Whoopsie Piggle have, by design, emphasized how having a child with Down syndrome is little different than having a child without Down syndrome, which is also why not all my essays focus exclusively on my daughter Lyra and her DS. I read somewhere that we are all on the path of disability whether caused by age, illness, accident or an extra chromosome. Tangentially, I have discussed medical issues that are more common in people who have Down syndrome, most particularly vision issues as Lyra was born with bilateral cataracts (occurring in 3% of newborns who have DS versus .03% of those born with 46 chromosomes). More recently, and painfully, I have written about the congenital heart problems that affect approximately 40% of the population with Down syndrome. Before this summer, I had met so many babies and young children who had undergone successful heart surgeries that I unintentionally dismissed the gravity of these cardiovascular diagnoses. And then three babies, all the same age as Lyra, died in just one week this past June. I wrote about babies Ryder, Fiona and Annie in “A Painful Week in the Down Syndrome Community.” Without rescinding my position that having a child with Down syndrome is little different than having a child without DS, I believe it is vital to discuss the possible medical complications that can accompany a diagnosis of Down syndrome. Why? Because uninformed fear causes people to say hurtful things. Because poorly informed medical personnel say fear-driven, and largely inaccurate, things when giving an expectant mother the news that the child she is carrying has an extra twenty-first chromosome. Because in some parts of the world, including regions in the United States and Canada, the Down syndrome population is undergoing a quiet campaign of genocide.
Children May Die
In my last essay, I wrote about traveling in Spain this summer with my oldest son, Claude. Watching my firstborn become a fully-fledged adult has made me ridiculously emotional. I don’t think of myself as a crier. As a child I learned not to cry at all costs. I rediscovered my tears when I became a mother, but in the past two years, I surprise even myself with sudden and unpredicted weepiness. I mentioned crying as I told a Starbucks barista in Barcelona how delightful it was for me, a mother of a child with Down syndrome, to see the respectful and fun relationship the café employees had with their team member who has Down syndrome. What I did not write in that essay was that every morning in Spain, every single morning, I cried. Most mornings, Claude rose and went for a run, leaving me to shower and get dressed. Before I did, however, I’d pull up Facebook on my phone while still lying in bed and weep over the pages of the babies who had died the week before I’d joined Claude in Spain. After her first heart surgery more than a year ago, Fiona’s remarkable parents created Fiona’s Hope Totes, which has its own Facebook page. This non-profit delivers care packages to families in Minneapolis/St. Paul who are experiencing an unexpectedly extended hospital stay with a sick child. The day before she died, Fiona’s family posted an urgent request for prayers as Fiona had been rushed back to the hospital due to complications after a second heart surgery. In the weeks after she died, that post requesting prayers remained the last post on the page, like a scream that wouldn’t fade as the family privately grieved.
Baby Annie’s doctors would not place her on a heart transplant list, whether due to complicating medical issues or the fact that she had Down syndrome remains ambiguous (that there is discrimination against the developmentally disabled getting organ transplants is not ambiguous, the subtle discrimination is real). Annie’s parents opened their lives to the world on her Facebook page, Annie Golden Heart. When I learned of her situation, Annie was alive, but in hospice attended by her parents and two sisters. Each day, I followed her page, hoping for a miracle, hoping as her story drew substantial attention from people worldwide that someone, somewhere would find a way to save that baby. Instead, day-by-day as I and countless others watched, Annie grew bluer, more lethargic and puffy. And then she died. In Spain, I saw the daily posts of a family submerged under and shattered by grief. Pictures of a baby’s grave more preciously decorated than any child’s bedroom, photos of a healthier Annie just months earlier including a collage of the once smiling tot with vibrant red hair and the facial features of her daddy. However, the photo that made me touch my iPhone screen with my finger, as though I could pass comfort through my device, was of Annie’s oldest sister with her face painted to look like a tiger. The caption read: Today is Nicole’s 9th bday. She has been a great sister to Annie. We are so thankful to Marie for taking the girls out today to have fun since it’s still very hard for us to even leave the house. Happy Birthday, Tiger!!!!
Only recently did I learn that baby Ryder had group B meningococcal disease, the most common strain of bacterial meningitis found in the United States (though Ryder did not live in the U.S.). I have found no evidence that having Down syndrome makes a person more susceptible to meningitis or the consequences of the disease more severe. What Ryder’s family is going through I would not wish upon anyone, but his Down syndrome had nothing to do with his death. I carried those babies, Fiona, Annie, and Ryder, with me as I traveled Spain with Claude. When we visited churches, I looked for La Pieta stations in which Mother Mary holds her dead son, Jesus, just after he’s been removed from the cross. When I found them, I lit a candle for those families. You do not have to be Christian, only human, to feel the emotions of that station in Mary’s life. It’s easy to imagine for centuries parents who have lost a child have found La Pieta a sanctuary of familiars.
When I returned to the States, I was too busy to look at Facebook for a few days. When I did, I saw that Annie’s page had been taken down and Fiona’s Hope Totes had resumed. Fiona’s valiant family was once again delivering care packages to families. Everyone’s journey with grief is unique and there is no accepted protocol except to grieve. A few days later, Annie Golden Heart was again a page on Facebook. I found Ryder’s page and his parents and two older brothers have taken Ryder’s favorite toy, Bear-Bear, traveling with them and posting photos of the white bear at an aquarium, a theme park and in the arms of Ryder’s older brother who took Bear-Bear to bed with him for comfort.
The Ones Who Live
Most babies born with heart defects survive due to surgical corrections that have, in most parts of the world, become routine procedures. But sometimes babies born with congenital heart defects, both with and without Down syndrome, die. And the parents who lose children with Down syndrome grieve every bit as much as other parents. But what about the children with Down syndrome who live? Most, but not all, babies born with Down syndrome have developmental delays. Meaning, things just take longer and sometimes more support is required along the way. Though hitting developmental milestones later than their peers without DS, most people with Down syndrome will walk, talk, dress themselves, read, go to school, graduate high school, cook, receive post-high school education or training, get jobs, fall in love, live independently, grow old and, like us all, one day die. That is “typical” life with Down syndrome. But what about the babies who face medical challenges beyond developmental delays and heart defects?A friend recently posted that she worries about telling people her son with Down syndrome has seizures. She is glad “he’s alive and he’s mine” but fears that someone else expecting a baby with Down syndrome who knows her son has seizures may chose an abortion based upon his case. Another friend told me about a woman who is a single mom of a boy with DS who is probably deaf, cannot talk, and cannot walk.
We, in first world countries, live in a medically miraculous time. A time unlike any known to humanity, in which death does not often visit us until we are middle aged. My ex-husband’s family lived for well over a hundred years in a small town in southeastern Ohio. Over the years, I heard stories of an ancestor named Flavia. Born in Germany, she studied music and had been introduced to at least one famous composer. In their tiny town in Ohio, Flavia taught music to children and had a parrot that often provided vocal accompaniment. On a visit back home (as my ex-husband used to call it), his aunt told us that Flavia’s gravestone had been vandalized and repaired. Later that afternoon, we stopped at her grave, which we had learned only that day was very near the city’s brick firehouse. I have no recollection of Flavia’s gravestone; I only remember the two stone lambs carved in marble on top of much smaller gravestones next to Flavia’s. Cholera claimed two of her children, ages four and six, in one summer, something nobody had ever mentioned. In the nineteenth century childhood death was not remarkable, yet families grieved as deeply as they do today. Visit any cemetery that dates back before the existence of antibiotics and you will find entire sections devoted to children, families who birthed eight, ten, or more children only to bury all but one or two.
Overwhelmingly, modern medicine is good, but not everything can be fixed. In the typical population, children are born regularly with, or later develop, learning disabilities, autism spectrum disorders, seizures, cancer, mental illness, vision and hearing difficulties. As of now, and unlike Down syndrome, these conditions cannot be detected with prenatal testing. However, that will likely change. And when it does, what will then be considered acceptable? Who defines which babies are perfect enough to be born? In human history, one need look no further than the past century to find pernicious programs to reduce or eliminate certain groups. Black women in the United States were frequently sterilized without their knowledge or consent. The Nazis target Jews, gypsies, homosexuals and the developmentally disabled (among many others) for systematic elimination. As the child of Christian missionaries in China, Pearl S. Buck regularly found the corpses of female newborns who had been discarded like trash. Looking back, this much is clear: once a society has decided that certain groups are not equal or good enough to exist, that decision is never static. If today it seems reasonable to seek a society free of members with Down syndrome, I guarantee that in the near future, particularly as prenatal testing begins to tease out more and more pre-existing conditions or potentials, the slippery slope of genocide will expand.
Weeding Out Variation
That Down syndrome is diagnosable, not only at birth, but also in prenatal testing, is good because, unlike autism or dyslexia, which are subjective diagnoses, results come easily and quickly. With an accurate diagnosis, appropriate support can be given to maximize the potential of an individual diagnosed with Down syndrome. However, because it is a yes-or-no clinical diagnosis, parents can also elect to abort a fetus because it has Down syndrome. Let me be transparent: I believe abortion should be safe and legal. I also believe it should be extremely rare and that support, including free birth control, should be available to all women to reduce the number of abortions. However, what the population with Down syndrome now faces is not an issue of abortion rights, but human rights. To target a specific segment of the population for elimination is simply genocide. We now have the medical means to tell a woman with a simple blood test whether or not her fetus has Down syndrome, underscoring two important points:
Making abortion illegal won’t stop the termination of pregnancies where the fetus has Down syndrome any more than it would end abortion for fetuses with 46 chromosomes. In Ireland, where abortion is illegal, the abortion rate for pregnancies where the fetus has tested positive for Down syndrome is 50%.
Once we’ve chosen as a society to decide who is human enough to live and who needs to be eliminated, watch out. Any group could be next.
Unbiased, accurate information is every woman’s right when receiving a diagnosis of Down syndrome for her fetus or newborn.
In the U.S. we know, based upon statistics, approximately how many babies should be born each year with Down syndrome. But, on average, only about half as many are. For several years in Denmark, aggressive prenatal testing accompanied by counseling that encourages aborting fetuses with Down syndrome has brought the rate of Down syndrome termination to a consistent 90%. In France, it’s over 80%.
My Child Is a Figurative Billboard
In early June, before all those sweet babies left us, my partner Max and I went to a party. We brought four of our children, Hugo, Jules, Leif and Lyra, to the family-friendly event at a beautiful home with a sprawling yard. I had a fabulous conversation with a woman who was smart and funny. After a long conversation, we separated and then reconvened. Lyra was nearby hustling around on all fours with her newly-perfected bear walk.
“She’s so cute, how she crawls on her hands and feet.”
“ Yeah, it takes them so much longer to crawl and walk with Down syndrome.”
“Wait, your daughter has Down syndrome?” the woman asked, looking astonished.
“Oh, yes,” I said. To me it is obvious Lyra has DS, but I am now firmly located on the inside of the larger community of those who have family members with DS and can recognize it more readily than I could before Lyra was born.
“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, I 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 five minutes, I watched a woman think she could not have possibly raised a child with Down syndrome to wondering deeply, perhaps painfully, what her life really might have been like as the mother of a child with Down syndrome.
Educating the Gatekeepers: Medical Professionals
It is tragically ironic that at a time when we better understand Down syndrome as a range of developmental delays and that those who are diagnosed with DS often positively respond to appropriate interventions, the termination rates in pregnancies with a diagnosis of Down syndrome are escalating to an alarming degree, in some places to the point of annihilation. We have the knowledge to diagnose and remediate Down syndrome but far too often, the message given with the diagnosis over-emphasizes worst case scenarios or contains information that is ridiculously inaccurate. (See the opening quote of “Fully Human and in Need of a Civil Rights Movement.”) Medical professionals, whose job it is to know the latest research findings, are not always giving scientifically accurate and balanced accounts of what it means today to be born with Down syndrome. In fact, statistics suggest that more often the opposite is true. My own understanding of Down syndrome has dramatically changed since the birth of my daughter. What I once saw as the reality of life with Down syndrome I now realize was based upon meeting people who had spent their entire lives, often beginning at birth, in institutions. My daughter stands on the shoulders of the past two generations of people born with Down syndrome who have been raised at home and in their communities, many of whom have worked with physical therapists, occupational therapists and speech therapists. Just as with her brothers, we expect Lyra to strive, even work hard, for all she can accomplish while we support her efforts in any way we can.
Preaching Past the Choir
Parents who have children with Down syndrome know that our children are more alike than different, that they enrich our communities and deserve, as do all human beings, to live full, productive lives. However, until everyone who does not have the pleasure of knowing someone with Down syndrome is made aware of the full humanity of people with Down syndrome, the population remains at risk for a quiet campaign of prenatal genocide and medical discrimination, whether in the form of inaccurate information at diagnosis, low expectations of children with Down syndrome (she’ll walk/talk/learn poorly because she has Down syndrome), or unequal access to medical care, including organ transplants. There are a number of organizations working to eradicate discrimination against people with Down syndrome by educating people everywhere. Please feel free to share the names of organizations you know of in your comments. Here are some that are doing very important work:
The National Down Syndrome Congress: These are the folks who conduct the annual convention we have attended each year since Lyra’s birth have as their campaign “More Alike than Different.” Their mission is “provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome, and work to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.”
The National Down Syndrome Society: With the mission “to be the national advocate for the value, acceptance and inclusion of people with Down syndrome,” NDSS often takes the lead on legislative issues such as the ABLE Act (read about the ABLE Act in “Miss Lyra Goes to Washington“). NDSS is the national sponsor of the Buddy Walk, a fundraising and awareness campaign that takes place each year in cities across the United States. Our local support group, The Upside of Downs, is an affiliate of NDSS.
Down Syndrome Diagnosis Network: This newly formed organization was created by a group of Mamas who have babies the same age as Lyra. DSDN’s long-term goals include filling in the gaps of inadequate support systems. In addition to supporting new families, DSDN is focused on changing the diagnosis conversation with the vital mission to help “parents give their medical providers feedback on the quality of their prenatal or birth diagnosis conversation. DSDN provides health professionals the necessary resources in order to deliver future diagnoses with unbiased information and support.” Read: gatekeeper education campaign. The work of DSDN is paramount, now more than ever.
The National Center for Prenatal and Postnatal Down Syndrome Resources: Complementing the work of DSDN, this organization is a clearinghouse of the most up-to-date information regarding Down syndrome. Furthermore and significantly, this organization tirelessly advocates for legislation, state-by-state, requiring accurate information be given with a diagnosis of Down syndrome. For information on the various states that have passed legislation requiring accurate information to accompany a DS diagnosis, and how it has been carried out, read this.
The National Down Syndrome Adoption Network: Not everyone, for whatever reason, can raise a child with Down syndrome, like the single mother who struggles to raise her son who is also medically fragile. And no matter how much education is given, there will still be some families who simply may not want to keep a child with Down syndrome. NDSAN is a non-profit that works both with birth families seeking placement of a child with Down syndrome and families who wish to adopt a child with Down syndrome with the mission of ensuring “that every child born with Down syndrome has the opportunity to grow up in a loving family.”
The Choices People Make
Along with the families who lost their babies this summer, I have thought frequently about the woman I met at the party who had terminated her pregnancy. Her desire for a baby had to be substantial as IVF is a painful, lengthy and expensive process. But then she was given frightening information and the directive to decide in two days what she would do. Knowing what I know now, I can only wonder: What if she had met Lyra before she received the diagnosis? What if she—and thousands of expectant mothers like her—had been given accurate information along with resources for support? I cannot help but believe, based upon the change I saw this woman undergo in five minutes, that today she would be the proud mother of a child with Down syndrome. And if all women were to receive the full and unbiased information that they deserve as autonomous adults, would we then be closer to a society that values the human rights of its Down syndrome citizens, rather than one that tacitly endorses the elimination of that population? I believe that, yes, we would.
When he was a senior in high school, my eldest child, Claude, called me a bad-ass mother (which I mistakenly took as pejorative until he explained the parlance of his generation). It’s true, my parenting mantra is “push and support.” So why, in the two years since he graduated high school, have I cried like a melodramatic helicopter mom at every turn in Claude’s life? Fortunately, with each adult milestone Claude passes, the chest-wrenching feeling diminishes and I cry a little less. The day before this past Mother’s Day, I was dry-eyed as I snapped photos of my son, Hugo, who, dressed in a sports coat and white shirt, stood arm-in-arm with Claude, whose new REI outward-bound backpack was strapped on his back over a quick-dry travel shirt. Then Hugo and I watched Claude peel off his layers for airport security, walk through the TSA doorless doorway, reassemble himself and, turning towards us, wave before heading off to his gate. Ardently, Hugo and I waved in return. I sucked in my breath. “Oh, Mama,” said Hugo as he placed his arm around my shoulders and pulled me to his side, “don’t cry, Claude’s going to be fine.” Though his response was sweet, Hugo’s words were misplaced. My tears these past two years have not been out of concern for my eldest son—far from it. In fact, I never cry over Claude, not really. His beginnings are my endings and grief, mixed with no small amount of joy, is the source of these sudden showers.
The day after he graduated from high school in June of 2012, Claude boarded a Greyhound bus for his grandparents’ home and a fulltime job in northern Michigan. Each summer, my three oldest boys have stayed for weeks at a time with these same grandparents, my stepmother and her husband (who is not my father; yes, we are a very modern family), who live just a block from Lake Michigan. And yet the day after Claude left, I called my stepmother and cried so hard she could not understand my words, though she knew exactly what I was saying.
“I’ll…never have…the three of them…together…on a road trip…again…it’s over…how can it be that it’s already over? I never…took them…to Yellowstone or…or, or well…other places,” I said sounding like a five-speed transmission bucking a new driver, my diaphragm slam-dancing in my chest. My stepmom said she understood and let me reel on and on until there was nothing left to release and, as abruptly as it had started, the episode ended.
Look, it’s no secret that I love big kids, especially my own. And neither is it a secret that I’m not terribly crazy about small children, except my own. Small children are often noisy and irrational. I think perhaps that’s why I breast fed all my kids for so long—nursing consoles otherwise inconsolable children thereby quieting them, sigh of relief for that, which is to say nursing is selfish on my part. I love who these people I raised have turned out to be; still, gone are the warm days of feeling like a mother quail with my little chicks following behind me in a row as we explore the world both near and far. As it should be, the reward for good parenting is adult children who venture out into the world on the paths they choose. Be that as it may and even with a career and full life, I am not immune to a touch of melancholia at my nest emptying out.
Other Mothers, Other Children
When I was in high school a woman on my street often included me in activities with her own children—events at the local university, drive-in movies, Fourth of July fireworks. When I wanted to take piano lessons, she told me I could practice on her piano since my family didn’t have one. At the time, I wished this neighbor was my mother and her family my family. As an adult, she was one of several women after whom I fashioned my mothering. When my friend’s daughter was in her early twenties, the two of them traveled together to India, seeing large sections of that subcontinent country by train, their sparse belongings in backpacks.
And so, modeled after my friend’s adventures with her young adult daughter, for many years I told my boys I would take them each on a trip, just the two of us, the summer after they graduated from high school. But when Claude graduated, I was seven months pregnant with Lyra, my fifth child. And he took the only fulltime position he could find, with the streets department in Charlevoix, Michigan, because even using all of my savings, which we did, there was not enough money to pay for Claude’s expenses his freshman year at the University of Michigan. The fact is, even with him working that summer we still weren’t sure how we’d cover his expenses as Lyra was born just ten days before he moved into the dorms in Ann Arbor. The poor financial timing of Lyra’s birth was compounded by her unexpected diagnoses of Down syndrome and bilateral cataracts. I wasn’t able to resume working for many months.
The truth is having an older set and a younger set of children often means letting go of previous plans, which I am not always happy to do. Having raised three young boys largely on my own, it seems remarkable I signed up for a second tour of duty. But the trade-off is a no brainer because with Max I am not raising Leif and Lyra alone and neither am I raising my older three children alone. Two more children plus a father for them all.
Having It All
“Don’t come home when your term ends. Your scholarships are paying for this trip, stay a couple of weeks longer and travel,” I told Claude after he announced he had been accepted to study spring term in Granada, Spain. We did not immediately plan a mother-son adventure because a friend of Claude’s thought he might join him. But a few weeks after Claude flew to Spain that Mother’s Day weekend, the friend’s plans fell through. The timing was bad for me. I recently acquired a second investment property that needs work before I can lease it and I rent to graduate students who mostly arrive in July. Nor was a trip financially ideal because, again, I’d just acquired a second investment property that needs work before I can rent to graduate students who mostly arrive in July.
But this I know: Timing for important things never seems ideal and money always works out.
I went to my bank and they gave me a credit card with zero percent interest for twelve months. Claude, like me, prefers traveling on the cheap because if you stay in Hiltons, how is the experience any different than just staying in the States? Using Rick Steve’s Spain, we agreed to find affordable hostals (a step above a hostel, hostals are a step below a hotel and in France they are usually called “pensions”). Max told me not to worry about my properties; he’d take care of the incoming tenants, the workers. I worried about leaving Lyra, I worried it was too much to ask of Max who, you know, also has a fulltime job. “Don’t worry about us, we’ll be fine. Go, this is just what you need.” And so I did.
Spain with My Son
Instead of pre-marital counseling, couples preparing to make a lifelong commitment should leave the country together. The challenges of travel, especially in a country where the native tongue is not that of the traveler, often reveal the essence of a person’s character. How does someone respond to lost train tickets, missed trains, difficulties finding a room for the night, discovering that the locals substantially overcharged you, the tourist, and there’s nothing you can do but pay up? All these things happened to us. When the first of them was resolved by a taxi driver running up to us with Claude’s lost notebook, in which he had stored our 200€ ($260) train tickets to Valencia, we came upon the mantra for our trip: Everything always works out.
The last time I spent two weeks alone with Claude was before my second child, Hugo, was born nearly eighteen years ago. Claude is an interior guy, which I have long, if not always, known. But without the cacophony of siblings surrounding him, it became unmistakably clear that Claude, unlike all his brothers (and his mother) does not engage in unnecessary speech. He’s not inscrutable, in fact, his company is very pleasant but he does not chatter idly. However, two topics elict animated verbosity in Claude: art and politics. Trips can either be deep or broad; we chose broad and traveled to five cities in twelve days, giving our trip coherence by focusing on art (mostly in museums, but not always). Both of us have studied art history and to talk with Claude about the work we saw was to talk with an equal. Claude knows more about pop art and artists than I do and he remembers more about other periods and movements (in all fairness to the mother, the son has studied these subjects more recently than she).
But Claude is also an artist and much of what we saw inspired him. I learned he loves Goya, especially the less formalized works the artist painted for his own home rather than those for the Spanish Court. At the Guggenheim Museum in Bilbao, Claude turned to me and said, “I wonder how much an air brush would cost?” Whoopsie Piggle’s logo on WordPress, in which rows of silhouetted faces look forward while one golden face turns upward, is a piece Claude did with an airbrush. Ironically, if not ridiculously, now that Claude has dropped out of Michigan’s art school to study English and political science, he can take the art courses he always wanted to take but couldn’t when he had to follow the school’s prescribed programming.
More surprising to me, I discovered Claude speaks Spanish quite well. Well, how is that a surprise? the reader might think, the fellow just spent two months living in Spain. Sure, except that when he was in the third grade, the psychologist who diagnosed his severe dyslexia told me not to ever expect Claude to do well in foreign language and suggested I seek an accommodation to exempt him from studying foreign language in high school. That psychologist made so many of Claude’s successes possible when she accurately diagnosed him and guided me to effective remediation options. But traveling Spain with him as my personal translator, again I was reminded that even the best experts can unnecessarily and unintentionally limit a child. “I know this probably sounds corny,” I said to Claude as we walked in the middle of a large boulevard park toward the Mediterranean Ocean in Valencia, where we were told we’d find the best paella restaurants, “but I remember when you were brand new and only had instincts for eating and voiding. You were a blank little slate and in no time here you are getting us around a foreign country speaking a second language.” Claude didn’t respond, my observation only remarkable perhaps to an adult who has watched the newborn become the child who became a man.
Síndrome de Down
“Do you speak English?” I asked the man working at a Starbucks in Barcelona across the street from architect Antoni Gaudí’s unfinished, yet spectacular church, La Sagrada Famíla. Generally, I always try to speak the language of the country I am visiting, but I did not know how to say what I wanted to say in Spanish. Probably in his late twenties, the man had short black hair and a well-trimmed, equally black beard on a face of fine bones—simply put: he was a handsome Spaniard. He told me he spoke a little English.
“Yo tengo una hija con Down syndrome,” I said and my disobedient eyes welled up. The young man reached across the counter and grabbed my hands with both of his. “I hope one day she can work somewhere like this, with such nice people.” Claude, who had gone to the bathroom, walked up and leaned in as he often did when translating for me, but he didn’t say anything. Instead, he quietly watched the barista and I exchanged sentiments in languages neither of us really knew. As we walked out the door, only then did Claude speak. He asked if I was okay. Whether my encounter with the people at Starbucks left Claude touched, embarrassed or indifferent, I cannot say.
We had stopped into the Starbucks before visiting La Sagrada Famíla so I could use their Internet to resolve a pressing matter involving the rental houses. The table where we sat with our cafés con leches was only a few feet away from the narrow end of the service counter. I could see the employees as they worked behind the counter but I did not pay attention until a young woman, who had come from a back room of the café, walked passed our table and behind the counter with the rest of the employees. I whispered to Claude that I thought the woman had Down syndrome but he was writing in his notebook and glanced up only briefly. I went back to my work too, only to snap my head up seconds later when I heard yelling and laughter. The handsome Spaniard, with the fingers of his right hand pulled together and pointed in his own direction as his hand waved like a nodding head, was laughing and yelling at the woman with Down syndrome. She, in turn, lifted her right arm and using her hand like a knife, sliced her points back at the man. I was only briefly concerned by the loud interaction in a language I did not understand (which may not have been Spanish, but Catalonian, the distinct language of that region), because the mirth between the two of them was evident as was the man’s frequent use of the word “guapa,” or beautiful, as he addressed the young woman. When she again walked passed our table, this time carrying a bus tub of dirty dishes to the back room, she was chuckling to herself.
(Note: I have never seen anyone with Down syndrome working in a Starbucks in the United States but a simple Google search found that the most identifiable coffee retailer in the world has long employed people with the most common genetic disorder.)
Not infrequently, I saw other adults with Down syndrome in Spain and consistently I observed something subtle yet, I believe, significant: They spoke for themselves. Yes, as simple as that. They spoke and others listened and responded. You see, routinely in the United States when I have spoken with adults with Down syndrome, their family members often repeat, with added details, what was just said as if the person with DS needs to be translated. Or more disheartening, which has me questioning how most Americans respond when approached by someone with DS, the family members redirect the person with DS under the mistaken assumption that listening to someone with DS bothers me. (It is important to note that neither scenario occurred in the many conversations I had with adults with DS at the National Down Syndrome Congress convention that we attended the weekend after I returned from Spain. I wonder if family members felt they could let their guard down at such an event or if in general the population who attends these annual conventions have adopted a different approach?)
“We don’t get upset about much,” Domingo explained when I asked him about what life was like for Spanish people with Down syndrome. Along with his wife, Marta, Domingo owns Quitapenas, the best tapas bar in Toledo, if not all of Spain. The first time Claude and I stopped in, for lunch, Domingo told us in a mix of Spanish and English, “This restaurant is like your home—have some drinks, eat here and you will feel at home.” Truer words were never spoken and we not only returned for dinner that night but we changed our train tickets, the ones that had toured Toledo in a taxi without us, to eat yet one more time at Quitapenas with our new friends. “People with síndrome de Down,” said Domingo, “they are just, you know, with us. It’s not, what you say, a big problem to us.” I have not done enough research to qualitatively understand how the Spanish treat their citizens who have Down syndrome, but from my two-week observation, Domingo’s assessment seems accurate.
After ten days and four cities, Claude and I returned to Madrid and, hands down, our favorite hostal, which is owned and run by Anuncia and Sabino, the Spanish grandparents anyone would want for their own. On the terrace of the fifth floor apartment, which has just five rooms for guests, Anuncia dries the bedding on laundry lines while just inside the family canary is brought in his cage for a few hours each day to sing for the passersby on the plaza below.
“I’ve had a great time, this has been such a good trip, Mama,” said Claude as we walked across the Plaza Mayor on our way back to Anuncia and Sabino’s after my last dinner in Spain.
“Me too. You know, Claude, when we get home and everyone is there and it’s crazy and I get overwhelmed, can you just remember that this is who I really am?”
I packed my stuff, and much of Claude’s, in both my backpack and an extra bag we had purchased for the purpose of making me a pack mule. Having purchased his ticket months before we knew I would be joining him, Claude’s flight home coincided with the first day the National Down Syndrome Congress convention. As a result, I left three days before Claude and, in case he did any more shopping, I took all his extra clothes and textbooks with me. Anuncia and Sabino came to the door to bide me farewell, even though “Claudio” was staying with them another night. Anuncia kissed me once on my left cheek and then many times on my right cheek and I began to cry. Life is a succession of farewells, or “passé bien” in Spanish, and our great trip was over. For two weeks, I felt like an old me I once knew, one who had time to dwell on the creativity found in museum after museum in city after city, a person who could have extended conversations with another adult, some of which lasted for days, a person who didn’t worry much. Yes, I missed my baby, Lyra, though truthfully, I did not think about my four children back in the States all that much, I knew they were fine without me. But return I must and return I did and not only did I leave behind, for a time, this man who is my son, I also left that old me, the carefree student who could wander Europe at will soaking in and sucking down to the marrow all that looks, feels and tastes good.
I was unnecessarily hesitant to ask Claude to go with me to the airport. Unbiden he announced that of course he was going to see me off. I was glad; the Metro ride required two transfers and a confusing 3€ charge just for entering the airport from the Metro station (and again when exiting). With Claude carrying the extra bag filled with his belongings, we walked from the Metro station to the airline’s counter to get my boarding pass, a distance longer than that between most Metro stops as was the walk from the counter to security. He walked through the security queue with me until he could go no further without a ticket and then he waited as I peeled off my layers of luggage, my jacket, my shoes. While doing so, I had a wonderful, if disjointed, conversation with a man and a woman who were behind me in the security line. Claude later told me he thought they were husband and wife, but they were father and daughter. Maria had on an elegant short-sleeved dress with a fitted, cream-colored bodice and a navy skirt. Her silky, dark hair, cut in a longish bob with bangs, moved like a curtain as she darted around like the rest of us to get her belongings into the security bins for the X-ray machine.
“My daughter has Down syndrome,” I said to the man in Spanish.
“Oh, wonderful! Hey, Maria, this woman has a daughter like you!” said the man, also in Spanish.
“My name is Maria,” said the beautiful young woman as she nodded at me and smiled. I learned that Maria, who lives in the Canary Islands with her family, is the second of four children, 27-years-old and, though he needn’t have told me, it was self-evident, the delight of her parents’ lives.
Claude, though a head taller than everyone else waving from behind the security line, could not seem to see me after I had reassembled my clothes and backpack onto my body. I walked back toward security, waving my arm widely, until I caught his attention. With the queue and the security operations between us, we looked at one another and smiled. I blew him a kiss and turned to walk to my gate. I looked back one more time and there he stood, my tall son, calmly waiting for me to disappear. I did not cry.
I should be packing. I leave in less than 48 hours to join my oldest son, Claude, in Spain for two weeks of backpacking adventures. It usually takes me one to two weeks to write (and re-re-re-re-re-write) an essay before I’ll post it and yet this essay is the third this week that I’ve written, and posted, in a few short hours.
It’s those three babies.
Providence or Coincidence
It’s often mentioned in Down syndrome communities that remarkable coincidences happen with seeming regularity. For many, they seem providential. Under “Religion” on my Facebook profile, I have “rabid agnostic.” Yes, I’m a practicing Buddhist, but who am I to say one religion is more true than another. (As a religious studies major in college I was often asked, especially at parties, which religion was the most true. Truth is in the eye of the believer and followers of all faiths equally believe in what they believe.) One person’s God is another person’s universal plan is another person’s coincidence.
I work at World Market. If you don’t know it, think Pier One with food. I don’t work there often—a closing shift, one or two times a week. Then, for no explained reason, I was scheduled from noon to five the Saturday before Father’s Day. A woman came to my register with Father’s Day cards. One of them pictured little bare feet below the hem of a dress standing atop a man’s pair of shoes, presumably dancing. I took a quick glance inside the card. With every step, I love you more. Happy Father’s Day.
“Oh, my, I think I’m gonna cry,” I said and promptly teared up.
“Oh, you really are!” said the customer.
“I’m sorry. I have a daughter with Down syndrome and a baby I know died yesterday after her second heart surgery. Her family is planning a funeral now, on Father’s Day weekend.”
Yes, I chat with my customers all the time, but this was far beyond anything I typically reveal. Thoughts of Baby Fiona’s family, which had not left me since I had heard the news, did not leave me when I clocked in at work. Baby Fiona, who had a successful second heart surgery, was sent home, only to be rushed back to the hospital two days later. She died five days after her surgery. As I’ve written before, her family started Fiona’s Hope Totes a year ago after Fiona’s first heart surgery, packages for families unexpectedly spending extended stays with a child in the hospital.
“Oh, please don’t apologize,” said the customer who was about my age. She gently continued, “I had a sister with Down syndrome who died when she was only one because, back then, they couldn’t operate on their hearts like they do now. It stayed with my parents for the rest of their lives.” I looked her in the eye and apologized for her family’s loss, briefly holding the moment together before the world rushed back in and I began ringing the rest of her items while cheerfully talking to her like any other customer.
Of all people, I lost my composure with someone who intimately understood what Fiona’s death meant.
Baby Fiona was buried this past Friday. The day before, a member of my Facebook group (moms with babies who have Down syndrome who were born in 2012 and 2013) took a card and a check to Fiona’s family. In a couple of days, we had collectively donated over $800 for Fiona’s Hope Totes.
Baby Annie, She of the Golden Heart, about whom I also wrote in “A Painful Week in the Down Syndrome Community,” was buried yesterday. On her Facebook page her family posted pictures of her tiny, white casket. I first saw a photo of her large, guardianesque father standing near the small, white box that now holds his daughter instead of his strong arms. A photo of her mother, seated in front of the casket with one of Annie’s sisters standing next to her, showed a woman who has been through hell and isn’t sure she will ever leave.
It’s not clear whether Annie was wrongly denied a heart transplant or not. But what is clear is that people with disabilities, including Down syndrome, do not have the same access to transplant lists as people without disabilities. Discrimination against the developmentally disabled is illegal, yes, but it has been clearly established that subtle discrimination greatly affects who gets on organ transplant lists. At the core of the issue is the value of human life. Who decides and why? Is it economics? Is it academics? Is it how many widgets a person can make? What factors are weighed in deciding who gets to live and who doesn’t? Who has a chance to survive and who must die in the arms of his or her devastated family?
What a Week
Anyone need a drink after this week? TGIF. Love ya, ladies. ~a mom on (‘12/’13) Moms with Kids Rockin’ the Extra Chromosome
Gallows humor. This weekend, many of us raised a toast to the deceased babies, their families, and each other.
Meanwhile, another friend has been with her mom in hospice for weeks, posting photos of days when her mom was young and feisty, her adoring father in many of them. A good death is like a good birth; if you are lucky, you are midwifed in and midwifed out. When the mother of my heart, my father’s mother, lay dying, I could not be with her because I lived more than a thousand miles away. But I have been there for others as they lay dying and it is a gift and an honor to be there.
As sad as we are when our elders leave—I miss my grandma daily—it is not the same as losing a child. Losing a child is to completely upturn the natural order of things and never have them completely set right again. My grandma lost her only daughter, shortly after birth, due to the Rh factor. Her lifelong grief so affected me that I refused to have an amniocentesis when I was pregnant with Lyra. My grandma had four boys and I have four boys. If I had done anything to risk it, I might have lost my only daughter just as she lost hers. Magical thinking? Perhaps. Yet I have never regretted my decision.
“What can I expect with her cataract surgery?” a new mother asked me a few months ago. Like Lyra, this woman’s daughter had been born with Down syndrome and bilateral cataracts. The baby has the same team of ophthalmologists as Lyra, which means I felt comfortable telling this mother not to worry, though of course she would. Baby H did fine with her eye surgeries, though one eye needed a second surgery to remove scar tissue. Earlier this year I had been in a marketing group in which all participants had family members who are developmentally disabled. One mom explained that her daughter had once worked at a mainstream job but now worked at a county program, which was better for her daughter socially because she enjoyed being in a program where the other people were like her. Remembering that, I decided immediately upon meeting Baby H’s mom that Baby H was destined to become Lyra’s best friend because the girls have so much in common.
Baby H was scheduled for heart surgery in July. After nearly two years of living with a baby with Down syndrome, a population of which forty percent are born with congenital heart defects, and I’m used to other babies going in for heart surgery. Open heart surgery seems strangely routine, no matter whether it’s a hole in the heart or something else. Ultimately, however, Baby H couldn’t wait until July. She was hospitalized on Mother’s Day and declared too weak for her to undergo the surgery she needed to fix why she was so sick. Weeks passed and Baby H remained in Akron Children’s Hospital PICU. I asked a friend who told me after last winter’s hospitalization of my son, Jules, that her mom had a direct line to God, to please have her mom pray for Baby H.
Two weeks ago, Baby H was strong enough for surgery. The surgery took hours upon hours and when done, her heart was too swollen for them to suture her chest. They closed her up a few days later. This week, she was finally extubated and her family has held her in their laps for the first time in over a month.
I went to Baby H’s Facebook page this week to lift my spirits.
When we learned after Lyra was born that she has Down syndrome and cataracts, Max and I told each other, Well, at least neither is life threatening. We thought we knew what we meant and we did. Intellectually. These past ten days have broken us down. We feel connected to these children with Down syndrome, and their families, who did not make it and both of us have cried repeatedly, suddenly and at length. Lately when I look at Lyra, all I see is her her energy, pink color and robust health.
Our hearts ache for the families of Ryder, Fiona and Annie Golden Heart (she’ll never be just Annie to us). It’s not the natural order of things to bury a child and I have no doubt that these parents, like the parents of my customer at World Market, will carry their children with them all of their days. The siblings too.
Now what happens? Here I’ve been working on a book proposal about the need for a civil rights movement for people with Down syndrome and I had no idea that there was undeniable discrimination with regards to who is placed on the transplant lists. It just didn’t occur to me. Now learned, I will not forget. I’ll carry it with me all of my days and do what I can to end this discrimination by continuing to write about what it is we can expect from people with Down syndrome, which is far more than most people realize. Educate those who do not know what it really means to have Down syndrome, especially those in the medical community, many of whom are woefully and shockingly unaware of the facts and yet often have the power, both positively and negatively, to make a difference. Advocate for people with Down syndrome to lead full and productive lives. Defy discrimination and stereotypes with each and every success story, exploding false and outdated conceptions of Down syndrome. Educate. Advocate. Defy.
Yesterday, I wrote about three babies in our Down syndrome community, all the same age as our daughter, Lyra, who died in the same week. One of the deaths sparked many national discussions on the issue of organ transplantation and whether or not people with disabilities are equitably placed on transplant lists. While touching on the issues of soft bigotry, I want to follow up and dig a little deeper on the issue of discrimination against the developmentally disabled. Though it is illegal to discriminate against a person with a developmental disability, it is undeniable that discrimination still occurs, which should come as no surprise. Ask any person of color if the illegality of racial discrimination has provided him or her with a life of equal treatment.
Discriminating against a specified group of people is to deny that they are fully human. To have those who make important decisions—medical professionals, law enforcement officials, teachers, employers, politicians, to name a few—deem a population as lesser human inevitably results in unequal access to medical care, justice, education, jobs and protection under the law as provided to those groups who are considered fully human.
A friend reminded me this morning of the American civil rights heroine, Ruby Bridges:
Ruby Bridges, a brave little African-American girl, entered an all-white school on November 14, 1960.
As soon as Bridges entered the school, white parents pulled their own children out; teachers refused to teach while a black child was enrolled.
Only one person agreed to teach Ruby and that was Barbara Henry, from Boston, Massachusetts, and for over a year Mrs. Henry taught her alone, “as if she were teaching a whole class.”
Every morning, as Bridges walked to school, one woman would threaten to poison her; because of this, the U.S. Marshals dispatched by President Eisenhower, who were overseeing her safety, only allowed Ruby to eat food that she brought from home.
Another woman at the school put a black baby doll in a wooden coffin and protested with it outside the school, a sight that Bridges said “scared me more than the nasty things people screamed at us.”
Though it was over 50 years ago, the openly vicious hatred of a little girl simply for the color of her skin doesn’t seem so long ago (perhaps because I was born only five years later). Yet today, who would question that this was unmitigated racism or that clearly Ruby was not seen as an equal human being in the eyes of many of the white citizens of her town? And while there are those who still believe that black children should not attend schools with white children, they are not likely to stand screaming about it on the curbside with casketed effigies of black children.
No, today discrimination is subtle, which, in some ways makes it more pernicious than what Ruby Bridges faced. For one thing, it’s harder to identify and easier for the perpetrators of discrimination to genuinely believe they are not biased against a particular group of people. Such is clearly the case with developmentally disabled Americans in need of an organ transplant. As pointed out in this article (published in 2004), in light of the Americans with Disabilities Act becoming law in 1990, developmentally disabled Americans have “moved from automatic exclusion to selective inclusion” in organ transplantation, often meeting many barriers along the way that organ transplant candidates without developmental disabilities do not face. The methods are so subtle as to be unrecognizable even by the perpetrators themselves:
There is certainly a sense…that these negative attitudes often have as much to do with not being as energetic in treating people with disabilities as it does with being actively resistant to treating them. People have been and are the victims of both benign neglect and active denial of treatment. Many respondents have been told that surgery or transplantation was just not offered to people with disabilities.
So why are some medical professionals less energetic in treating people with developmental disabilities? In many articles I have read, patients and their families report being told by their medical professionals that persons with developmental disabilities are not capable of following the intensive post-transplant care regiments or that they do not physically handle transplant surgery as well as the typical population, yet the very opposite is true.
Maybe it is obvious, but the question needs to be asked: Why are people with developmental disabilities discriminated against, which by definition means that significant (and often powerful) members of society do not see the developmentally disabled as fully human? Personally, I believe exaggerated value is placed upon one component of being fully human—cognitive ability. That people with greater levels of intelligence are considered more valuable to society and their lives worth saving more so than the lives of the developmentally disabled. Never mind that the range of cognitive abilities in people with Down syndrome is wide, never mind that any threshold of intelligence is never a predictor of a productive life. And by productive, I mean many things beyond economics, for while it is true that more and more adults with Down syndrome are entering the workforce, there is immeasurable value in how one person affects the lives of so many others.
Which brings me back to the three little ones who died in the past seven days. Their lives have touched countless people. Perhaps those of us who have had intense discussions about organ transplant policies this week will carry on the work of defeating the discrimination against those with developmental disabilities so that instead of “selective inclusion” there will be equal access to organ transplants. I sure hope so.
However, if discrimination were removed entirely from the scene, people with disabilities would still have a problem getting life saving transplants because there are not enough organs.
SIGN UP TO BE AN ORGAN DONOR RIGHT AFTER YOU FINISH THIS ESSAY.
When Lyra was four months old, I met a woman at a meeting for new parents of children with Down syndrome. A few weeks later, she sent me an invitation to join a Facebook group titled “(’12/’13) Moms with Kids Rockin’ the Extra Chromosome.” I remember thinking the title was a bit cumbersome, but I don’t recall what I expected when I clicked the “join” button. Not much I suspect for, at first, I hardly looked at or commented on the page. I was busy with my family, my baby and her diagnoses of Down syndrome and bi-lateral cataracts and all the adjustments that go along with any new baby. Today, I have a list of all I did not know or anticipate:
I thought the group was local, but it is not. Though most members are Americans, the group has families from all over the world.
I had not anticipated the value of an immediate and large group of moms whose kids with Down syndrome were the same age as my child and, therefore, will go through the same stages of development at roughly the same times as my child because…
It did not occur to me at first that this would be a lifelong group, but once it did I was floored that something like it hadn’t been created before and reminded that, for all its distractions, the Internet’s impact can be profoundly positive.
I could not have imagined how close I would become with some of the other moms. Back in the old days, before Facebook, I never participated in chat rooms. Even today, I do not belong to many Facebook groups. Yet there are women I have only met through this group whom I regularly turn to for input. Recently, one of the moms with whom I corresponded almost daily has largely dropped off due to a difficult pregnancy. I miss her as much as if I had a best friend living next door who moved to another state.
I did not know how much I could cherish the children who give us reason to have a Facebook group nor how invested I would feel in their developmental milestones. Videos of crawling, walking, talking, straw-sipping babies have me cheering in my seat at my computer as if I was watching the Chicago Cubs win the World Series.
I certainly did not expect my heart to be broken.
Then one week, in June of 2014, three babies died. Baby Fiona died after complications from her second heart surgery. Baby Ryder was fine when he went to bed, had a fever and rash in the morning and was gone by two in the afternoon. And Baby Annie. Baby Annie was not given a heart transplant, for reasons that remain unclear, and her family—mother, father, and two older sisters—have watched her progressively become weaker and bluer. She died early this morning.
Bad things happen all over the world each and every day and it is not humanly possible to feel the appropriate amount of grief for each loss. The deaths of these three babies hits home, however, and I do not recall a week in which I have cried so much and so hard for people I have never met, other than on Facebook.
“Why so many all at once?” my 13-year-old son, Jules, asked me as I wept over Baby Annie’s last photos. I told him I don’t know, but if a heart cannot be fixed, perhaps two years is a typical life expectancy.
The Hearts of Our Children
Forty percent of babies born with Down syndrome have some form of congenital heart disease. Some are easy fixes such as small holes that today can be surgically patched or sometimes even close on their own. Others are severe and may be beyond surgical repair, in which case the only option for survival is a heart transplant.
Baby Annie’s Facebook page stated the only thing that would save Annie’s life was a heart transplant but because she had Down syndrome, she was not placed on the donor list. The outrage of families whose children have DS has been potent. A petition appeared on Change.org asking President Obama to outlaw transplant discrimination for those who have developmental disabilities.
A day or two later, the National Down Syndrome Congress posted the following:
In 1996, Sandra Jensen, a 34-year-old woman with Down syndrome, needed a heart-lung transplant to survive. As far as anyone knew, she would be the first patient with Down syndrome to receive an organ transplant, and initially she was denied. Along with her doctor and her family, Sandra had to fight for the right to receive a transplant. The case gained nationwide attention, arguing that Down syndrome should not be enough to automatically deny a patient a transplant. Sandra won. In January, 1996, she received the requested transplant at Stanford University Medical Center. Her case was seen as a test of whether hospitals could use blanket categories to deny treatment. Since the passage of the Americans with Disabilities Act and the establishment of related federal regulations, discrimination against people with disabilities in medical treatment is prohibited.
Today, there is an internet petition (change.org) asking the President of the United States, “Why are children with Down syndrome not considered for organ transplants?” While we love grass roots advocacy, we want to set the record straight by saying it is not true that people with Down syndrome are automatically denied life saving treatment based on their diagnosis of Down syndrome today.
Making decisions around organ transplantation is a terribly complicated process, and the supply of organs for donation is quite limited. People are denied transplants for a variety of reasons. A patient who feels he is being denied solely on the basis of Down syndrome needs to appeal through the hospital system.
Make today the day you sign up to be an organ donor, and help more people receive the organs they desperately need.
Yes, organ transplantation is a complicated process with many factors necessarily taken into consideration. Yet there seems to be ample evidence and agreement that “soft” bigotry exists when it comes to placing a person with a developmental disability on a transplant list. Anecdotally, more than one mom on my Facebook group has had a cardiologist tell her that should all other options fail, a child with DS would not make it on the heart transplant list because a person with a developmental disability cannot be expected to follow through with the extensive post-operative care. (Hello? A two-year-old with or without Down syndrome is not the one responsible for the post-operative care, the caregivers are.) Yes, it is illegal to discriminate but at the end of the day the facts overwhelmingly point to inconsistencies in how doctors decide who to place on the donor lists and given the high proportion of congenital heart defects in children with DS, a disproportionately low number of people with DS make it onto the lists.
When we attended last summer’s NDSC convention, one of the biggest takeaways for me was how so many medical professionals in the United States have arcane and patently wrong notions about what it means to have Down syndrome. In the days after the convention I wrote “Fully Human and in Need of a Civil Rights Movement,” highlighting, in part, the existing discrimination against the developmentally disabled. It has been nearly a year since we attended our first NDSC convention and I have only become more aware and, yes, outraged, at the discrimination against people with developmental disabilities that continues largely unquestioned.
Max, whose professional paths, first as an English professor and later as a lawyer, have made him a stellar researcher, was on the computer until very late last night, trying to make sense of the organ transplant list issues. When he came to bed, he said, “Baby Annie will be the Rosa Parks on this issue, Holly; she will not die in vain.” I hope he is right and that the numerous conversations begun during her prolonged suffering and now, after her death, have infused momentum into individuals, groups, and national organizations to end disability bias in organ transplants.
There are so many details about Baby Annie’s medical journey that are unknown to the public. I read that a national Down syndrome organization was ready to advocate for her to be put on the list until they learned of further medical complications in her case. However, the fact that a national Down syndrome organization has as part of its mission the advocacy of organ transplants for people with DS underscores that soft bigotry is a pervasive and ongoing problem, which kills our children.
What We Can Do
Awareness is the first step to solving any problem. Please share this post, the posts of others and, certainly the articles linked here. And, as always, speak out to your politicians, many of whom may not even be aware a problem exists, just as I was unaware until these sweet babies left us.
Baby Fiona’s family started a wonderful non-profit after one of Fiona’s earlier hospitalizations. Fiona’s Hope Totes are care packages for families experiencing an unexpectedly extended hospital stay with a sick child. As of now, I believe the program is just in Minneapolis-St. Paul, Minnesota where Fiona lived with her family. I can easily imagine it becoming a national non-profit. Please consider donating to this charity to honor Fiona and help other families as they face medical odysseys.
Baby Annie was in hospice care for the last several weeks, surrounded by her family, who needless to say, did not leave her side. A fundraiser has been established to help her family. Please consider contributing to this family who has loved so hard and suffered so deeply.
And, finally, please, please, please become an organ donor today, if you have not already.
(Kimchilatkes I miss your sagacious ability to tease through complicated issues now more than ever. Your voice is sorely missed and will return, I hope, very soon.)
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.
Imagine you discover that your great-aunt, who recently died, left you $3,000. She had not told anyone she planned to leave you a small sum of money and so it comes as a complete surprise to you and the rest of your family. Because she knew you make minimum wage at your job, your aunt felt you could use the money to buy a few things you can’t afford, maybe a new television or some furniture for your apartment. She said as much in her will. What she did not know, however, was that her gift would devastate your life.
Imagine that shortly after finishing high school, you find a job at a fast food restaurant in your neighborhood. You love your job. You feel like a useful member of a team of co-workers and enjoy helping the customers who come to the restaurant. You work hard and look forward to your shifts. After six months, the manager of the store tells you she is pleased with your work and would like to increase your hours to full-time. You would love to say yes, but you cannot.
What’s key to these scenarios?
As an adult American diagnosed with Down syndrome, you are allowed no more than $2,000 in savings in order to keep your Social Security income, your Medicaid health insurance and even, in many instances, your housing and your job. You are not getting rich on your SSI. In Ohio, for example, the maximum you can receive is about $700 a month. Overwhelmingly, your employment options will earn you at most minimum wage (currently $7.85 an hour in Ohio) and if you are working at a Medicaid-subsidized group program, you might only receive a small stipend.
But you want to work; you want to be able to afford things that most Americans take for granted—new clothes, glasses that fit your face, furniture for your apartment, maybe even a down payment on a home of your own. You are a contributing member of society and just want the opportunity to work without the fear of losing the safety net that is so pivotal to your health and independence.
These scenarios and others like them really happen. All. The. Time. The Upside of Downs, a Northeast Ohio support group for people with Down syndrome and their families, regularly receives phone calls from frantic families as they grapple with the sudden loss of so many important things for their child or sibling because of a mere $2,000 windfall or a child who worked too many hours one month and, as a result, are denied Medicaid benefits the following month. Without Medicaid, prescription drugs are often beyond the financial means of an adult with Down syndrome. Furthermore, housing and vocational waivers are provided through Medicaid and their loss could leave you homeless, with no where to go.
Not What Grew Up With
Growing up, I did not know children with Down syndrome because in the 1960s and ‘70s, institutionalization was still common and mainstreaming was not. I first met adults with Down syndrome in the 1980s when the institutions were closing and group homes were opening. I believed the abilities and behaviors of those adults I first met represented the norm for someone diagnosed with Down syndrome. I was terribly wrong. What I observed was primarily the effects of lifelong institutionalization, often from infancy.
I regularly catch myself remarking, with some surprise, “Wow, Lyra is so bright!” and then I wonder why am I surprised. Lyra lives in a rich home environment with two loving parents and four adoring brothers. Twice monthly she works with her team of three therapists: speech, physical and occupational. Our days take into account how to help Lyra overcome her primary challenge—not her cognitive abilities, far from it—but her hypotonia, which affects her speech, her mobility and her fine motor skills (think pincer grip). Lyra is socially engaged, full of speech, both spoken and signed, and eager to learn.
Truly, as a mother of four older children, the only substantial delays I see in Lyra right now are her size (wee, teeny peanut) and her low muscle tone. I fully expect her to read, go to college, drive a car, live on her own and have a rewarding job. She may marry and, yes, even have a child of her own. This is not the Down syndrome of my childhood,when babies where locked away and processed en masse in ways that did not allow anything near the full development children with Down syndrome are capable of. Why would it? Early and continuous institutionalization stunts the full development of all children, including those with the typical number of chromosomes.
Achieving a Better Life Experience (ABLE) Act of 2013
For nearly ten years, organizations such as the National Down Syndrome Society (NDSS), activists and self-advocates (persons with Downs syndrome who speak out about the issues they face) have worked on a bill known as the ABLE Act. In short, the ABLE Act would allow people with Down syndrome and other disabilities to have tax-free savings accounts as an expansion of the existing IRS 529 rules, currently used to save for college tuition. Similarly, the ABLE Act 529 accounts would allow people with Down syndrome to save for qualifying expenses such as housing, transportation and medical costs. Most importantly, people could keep up to $100,000 in their ABLE account to supplement their current governmental benefits without fear losing those benefits.
Wow! $100,000 sounds like a lot of money!
Yes, if given $100,000 in one tax-free, lump sum that would be a whole heap of cash. But consider this: When Max and I graduated from high school in the mid-1980s, the life expectancy for someone born with Down syndrome was twenty-five years. Putting aside the distressing idea of losing any child in their twenties, that life expectancy would mean that even though we had Lyra in our mid-forties, we could expect to outlive and continuously provide for her as needed. Now, just thirty years later, the life expectancy for babies born with Down syndrome is sixty years (and rising). No matter how healthy our lifestyle, it’s safe to assume that Max and I will not be centenarians.
So what happens to our daughter when we are gone? How do we plan for her? Just as importantly, how do we assist our other children, Lyra’s four brothers, who will care for her when we are no longer here? She may outlive us by many decades, in which case $100,000 no longer sounds like all that much money to work with.
And this is what Jules and I told our elected officials in Washington D.C. on February 27.
Meeting Old Friends for the First Time
Half an hour after we arrived at our hotel in Arlington, Virginia, Jules sat with me at one of the two tables reserved for Ohio activists, mostly parents, but also siblings and self-advocates. We listened to members of the NDSS discuss the importance of the ABLE Act, the Congressional Down Syndrome Caucus and the intersection between Down syndrome and Alzheimer’s disease before a presenter from Soapbox Consulting coached us on how to talk about these topics with our legislators and their staff members.
And then we had what felt like a family reunion. Because of the Internet, I know many people who have children with the diagnosis of Down syndrome. After our training session, I hugged people with whom I have had online conversations but never met in person, including Jenny Jacobs. Jenny had the brilliant idea to start a Facebook group for families with children who were born in 2012 and 2013 with the diagnosis of Down syndrome. This Facebook group is an amazing resource for information and support, creating a virtual community to turn to with questions, concerns and celebrations at all stages of our children’s development.
When first invited to join this Facebook group, by another mom who lives in Northeast Ohio, I thought it was a local group and all the members posting lived nearby. It was only when a woman with whom I had several exchanges mentioned that she lived in Oakland, California, did I realize that the group was national. At dinner that first night, Jenny told me that it is actually international, as it includes families in Canada and Australia.
The Oakland mama powers out mighty essay after mighty essay on her blog, KimchiLatkes, many of which I have shared on my Facebook wall. Back in December, she told me about the NDSS conference and legislative “march” in support of the ABLE Act. She also invited us to share her hotel room. I have never participated in dating websites such as Match.com or eHarmony, but I suspect I know what it feels like to first meet someone with whom you have had many email conversations, shared photos, and possibly even a few phone calls. I wondered how my Oakland friend and I would find each other—would we like each other as much in person as we seemed to whenever it was convenient to chat online? In this instance, it turns out the online relationship was a good predictor: two nights in a row, for hours after our babies and Jules had fallen asleep, we laid on each of our beds in the dark hotel room and talked like middle school girls at a sleepover.
Meet and Greet on Capitol Hill
Our task was pretty simple. We needed to ask our Ohio legislators to:
Co-sponsor the ABLE Act or thank them if they already have.
Sign a letter requesting that the ABLE Act be brought to the House or Senate floor for a vote as soon as possible.
Sign a letter urging a hearing on, and funding for the research of, the intersection between Down syndrome and Alzheimer’s disease.
And finally, to join the Congressional Down Syndrome Caucus (House members only).
Of the four legislators we were scheduled to meet with, three were already co-sponsors of the bill and happily agreed to sign a letter urging the ABLE Act up be brought up for a vote. One congressman was already on the Congressional Down Syndrome Caucus, and the other, a newly elected member, seemed open to the idea. All four listened to the information we gave them on the intersection of Down syndrome and Alzheimer’s.
Dear Readers: We need your help!
The only outlier in all this was Senator Rob Portman, a Republican from southern Ohio. His aide insisted that Senator Portman supports the ABLE Act philosophically, but will not commit to co-sponsoring the legislation until he learns the Congressional Budget Office’s (CBO) analysis of what these tax-free savings accounts would cost the federal government in lost tax revenue.
The people I spoke with at the march believe the CBO’s number would come in between one to one and a half billion dollars a year. But that number strictly looks at lost tax revenue. It does not take into account the taxes that would be paid by adults with Down syndrome who are able to work as many hours as they wish without fear of losing their needed benefits. Nor does it take into account differences that are more difficult to tease out with standard accounting, such as loss of sibling income and, therefore, tax revenue, as families must currently make hard choices on how to care for their brothers or sisters with Down syndrome.
Fellow Ohioans, please call Senator Portman’s office and let him know that the benefits of the ABLE Act far outweigh the costs and that it is not unreasonable to consider the ABLE Act budget tax-neutral for all the reasons mentioned above.
Fellow Americans in other states, please visit this NDSS link, which not only discusses the ABLE Act in detail, but also contains links that identify which senators and representatives, state by state, have co-sponsored the ABLE Act. Please check and see if your legislators are co-sponsors and if not, contact them and ask them to consider doing so.
There is nothing wrong with families caring for one another. But families should not be restricted in their ability to do so because one member is diagnosed with Down syndrome. Adults with Down syndrome should not have to choose between employment opportunities, including how many hours they work, or Medicaid. Adults with Down syndrome need to be able to work meaningful jobs, save the money they earn, and live to their highest potential. And when that happens, so too will it no longer be surprising for adults with Down syndrome to lead lives that look little different than yours or mine.
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.
I have a thousand words or more for each of the pictures from this recent photoshoot of my littlest children. I easily have several thousand words describing my journey with the photographer.
But now is the time for the writer to step aside and let the visual artist, Vanessa Gilbert, speak with images as only she can do.
If you are a reader located in NE Ohio, I strongly recommend that you consider hiring my dear friend the next time you want to have professional photos taken. She’s amazing with kiddos of all ages, composition and final products. See for yourself:
“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.
Prescript: In July of 2013 we learned about Fruit-Eze. A jam-like product made entirely of fruit, it worked wonders on the constipation that routinely flared up even after Lyra began taking Synethroid. She has a tablespoon each and every morning. Available online, Fruit-Eze is nothing short of miraculous.
Warning: As the title indicates, or so I believe, expect baby poo descriptions in this piece. Squeamish Readers, please proceed with caution.
“It could be her thyroid,” said Dr. M at Lyra’s six-month check up. “It’s standard of care for Down syndrome to check it now anyway.” I was at Lyra’s six-month check up and, just as I had at her five-month check up, I explained to Dr. M that iron supplements had constipated Lyra. What I hadn’t told Dr. M was that ten days after we started giving Lyra the multivitamins with iron, we had stopped. Dr. M very strongly recommended giving Lyra an iron supplement but Lyra’s cereal has just as much iron in it as the vitamins. Thus, I didn’t see any reason to continue dosing her with the vitamins when I just knew they had caused Lyra’s unrelenting constipation.
Here’s what I know about constipation: If you have it, the only people you might tell is your significant other or your doctor. Then again, you might not. But if it is your baby who is constipated, that little person’s bowel movements will consume your thinking, day after day, and you will talk about it to anyone who will listen. Nearly all else in your life becomes less important than your baby’s bowels. It isn’t even necessary to document when the baby pooped last. You know the date like you know your own birthday. And this is because a constipated baby is generally a very sad baby. The term “colicky” isn’t about temperment, but describes a baby who has irregular digestion and is pretty grumpy about it.
I learned all about this back in the 90s with my Hugo, whose birth was by far my most difficult. Weighing in at 10 pounds and with a chest circumference that was larger than that of his big head, we called him “Huge-o” for several months. He also got stuck on his way out of the womb. After I had delivered what seemed like his soccer ball-sized head, the midwives realized he had shoulder dystocia and while I puffed like a locomotive going up a steep hill, the midwives safely repositioned him. It took a while, but he came out just fine. A couple of days later, however, I developed a nasty uterine infection and was put on Augmentin, a big-gun antibiotic. It cured my infection but, through my breast milk, it also trashed Hugo’s digestive tract. He cried nearly every waking moment for the next five months. Born in late November, I drove him in the car on bumpy roads to soothe him. If he fell asleep, I pulled into parking lots, parked and, with the car running, worked on crossword puzzles. Three-year-old Claude, in the seat next to Baby Hugo, was under strict orders of silence if the baby fell asleep. Though more often than not, Claude also nodded off after a long drive to nowhere in an overly heated car.
Hugo cried because he hurt. He would go nine to twelve days without a bowel movement. I felt über-environmental—using cloth diapers was a breeze with Hugo; rarely was there any messy clean up. Just weeks of easy-to-wash, low-odor, pee-pee diapers. When he did go, however, Hugo blew like a volcano. Between the volume and the force with which he expelled it, I would often first spy Hugo’s poo at the nape of his neck, just above his collar. Everything would have to come off and at least twice, when strolling him on the tile floor of the Lane Avenue Mall in Columbus, I had to dash into Baby Gap to buy him clean clothes (you would think I kept an outfit on hand, but since it was so rarely needed, I would get lulled into lugging very little gear).
Hugo eventually normalized, but I recall those early days with an element of Post Traumatic Stress Disorder. It may sound like I’m joking, but I’m not. For months, Hugo’s shrieks of pain and subsequent nursing frequently punctuated what little sleep I got. During the days, I could not accomplish much of anything other than trying to calm him, which meant holding him around the clock or driving him on bumpy roads. I have heard that psychologists compare a lengthy episode of parenting a colicky baby with torture, and I believe it. With the pregnancies of every child after Hugo, I prayed for anything but another colicky baby.
Lyra, like all my other babies except Hugo, quickly and regularly produced the kind of lovely poos that babies who are exclusively fed breast milk produce. The color of Dijon mustard, they smelled yogurty, and she produced them two to three times a day. That is, until we gave her the vitamins that included iron. And then, snap, she just stopped going. After five days, I gave her a pediatric suppository and what came out was dark and tar-like. Damn iron I thought. After ten days on the vitamins, we stopped and figured that in a week her stools would once again be mustardy and regular. But that didn’t happen. We began working with her diet, first giving her prunes to eat, then, a few weeks later, switching her cereal from rice (which can be binding) to oatmeal. And we began giving her a daily dose of algal DHA because it is good for brain development. It is also oily and should help move things along. We regularly massage her belly and her day care provider gives her Reiki treatments. She has never been fed formula, which also can bind, but exclusively drinks breast milk.
All to no avail.
Instead, Lyra’s weekly bowel movements have become heart-breaking spectacles, which the whole family often attends. After several days without a stool, Lyra’s abdomen tightens like a rock slab as she fusses inconsolably. Rarely does Lyra pass the stool on her own now and she has become what I call “Our Little ATM.” I pop in a small glycerin suppository and in return, Lyra strains and pushes out black pellets. We hold her legs and massage her tummy and her brothers coo to her soothingly, while she wails with pain and sometimes, just before a hard pellet of poo erupts, droplets of blood seep through her anus. The only comfort for us is how quickly Lyra settles after everything’s passed. Then five days later, it starts all over again.
Dr. M Scores Again
The reason Dr. M insists Lyra take iron is because anemia, or iron deficiency, reduces the oxygen getting to the brain. And a brain getting less oxygen risks a drop in IQ and with Lyra’s Ds, it is imperative to avoid additional hits to her IQ.
At first blush, it may seem that I am anti-medical. I had all of my children at home. Until Lyra, I never participated in the American Academy of Pediatrics schedule for well-baby visits. I’m not interested in taking a healthy baby to see the doctor. And also, I don’t follow the AAP’s vaccination schedule, as I mentioned in “Finding a Pediatrician, or The Continuum of Jewish Women.”
But I am not anti-medical. In fact, I am deeply appreciative of modern medicine and all that it can do. Had Claude been born 50 years earlier, he likely would have died of dehydration by his first birthday, which was a common cause of childhood death prior to the 1950s when IVs became widely available. Claude had a vomiting virus and in less than 24 hours had shriveled up. The skin on his stomach stayed wrinkled like a raisin’s after a doctor pinched and released a one-inch section between her forefinger and thumb. Claude was rushed to the emergency room and given fluids intravenously.
Had I given birth to Hugo 75 years earlier, I might have died from my uterine infection, as antibiotics only became available in 1935. And certainly, had Lyra been born just a handful of decades ago, her cataracts would not have been surgically removed and she would have been blind.
But I find that the medical professions are often in the position, whether or not providers like it, of treating the symptoms of illness without effectively addressing the underlying causes. We observed an example of this when Lyra had her eye surgeries. Both times as we waited for Lyra to awaken in the post-op recovery room, most of the other patients were recovering from tonsillectomies. The cries of these children were as raw as the pain in their throats.
“I thought they didn’t do many tonsillectomies anymore,” I said to the nurse attending Lyra after her second surgery.
“Oh, no, they have been on the rise. It’s the bulk of what we see in here,” she said and when I asked why, she told me, “It’s sleep apnea. So many children are heavy now and they develop sleep apnea.
“So they take out their tonsils?” I asked.
“Yep,” she answered.
It shocks me that children should undergo surgery, which is hardly without risks, for something that is correctable with diet. But physicians have little to no ability to change what is likely an entire family’s eating habits in order to get one child to lose enough weight to resolve that child’s sleep apnea. So they quickly fix the symptom by surgically opening the airways with tonsillectomies.
That is not how I live. When my children or I have a health concern, I consider what might be the source of the issue and seek to resolve it. For example, Jules has had unremitting nasal drainage all this school year. I could just give him antihistamines, which I have now and again when he couldn’t sleep. But as the problem appeared systemic, I have worked with him to clear out sugar, wheat and dairy from his diet to see if that helps. Two weeks later, he stopped complaining of drainage.
And this is why we have not treated Lyra’s constipation with laxatives, which would only further decrease her body’s ability to properly process and eliminate her stools. Her constipation, as horrible as it is, is not her problem but rather the symptom of a bigger problem.
In the case of Lyra and her constipation, it seems the introduction of iron was simply an unrelated factor, even though the timing suggested otherwise. As it turns out, the blood tests confirmed that Lyra has developed hypothyroidism. Her actual thyroid levels were fine. But the thyroid gland is the lackey of the pituitary gland. Like a shift supervisor at a factory, the pituitary gland monitors the thyroid gland’s output and responds by secreting something called TSH. TSH tells the thyroid gland how hard to work. When it wants the thyroid gland to work harder, the pituitary gland sends out more TSH. In Lyra’s case, her pituitary gland was making, according to some charts, twice as much TSH as is normal in order to get her thyroid gland to produce the proper amount of thyroid.
We were referred to the Endocrinology Center at Akron Children’s Hospital where I asked, just to be sure, that they retest Lyra’s blood. They found the same results as Dr. M’s lab. We were seen by a nurse practitioner who, after having me describe Lyra’s symptoms, asked if anyone else in the family had suffered from constipation. I told her about Baby Hugo and she said, “Oh, I tell parents it’s not so much how often they go, but what the consistency is. If we have mashed potato stools, it’s okay, but the hard pellets are not.” Had I known that sixteen years ago!
On April sixth, we began giving Synthroid, a synthetic thyroid replacement drug, to Lyra. At first, we smashed a tiny pill between two spoons, mixed the resultant powder in a cup with a teaspoon or so of breast milk, drew it up in an oral syringe and gave it to her. On April seventh, our clever girl began blowing raspberries when she felt the plastic syringe touch her mouth. Between what she sputtered out of her mouth and the reality that some of the powder remained in both the cup and the syringe, we weren’t sure how much of her dose she was actually getting.
Beginning this week, I now slide the small pill down her throat with my finger and promptly nurse her. She gagged a little the first time, but hasn’t since. We know she has the full dose in her body and once she’s been on the Synthroid for six weeks, we will have her blood tested again. After that, we get to visit the Endocrinology Center every three months until Lyra is four or five years old. It is quite likely that Lyra will need to take some form of thyroid replacement her entire life. I am just glad we caught it so soon, since thyroid can affect so much, including many things that are already concerns for people with Down syndrome.
For now, we are looking for softer stools, however often they pass. And perhaps, too, our wee teeny peanut will get a little bigger.
Update, April 21, 2013:
“You want to smell something wonderful?” I asked Max this afternoon, before sticking Lyra’s behind in his face. He was working at his desk in his home office when I brought Lyra in from the minivan after returning from Jules’ track meet. As soon as I’d plucked her from her car seat, I’d smelled it: pungent, breastmilk poo.
Sure enough, when I opened Lyra’s diaper a few minutes after making Max sniff her derriere, I was greeted by the lovely site of an oh-so-typical poo. That is, typical for a baby who is exclusively breastfed–mustardy orange with a butyeric odor, kind of like movie theater popcorn–who isn’t suffering from hypothyroidism.
Fifteen days after she began taking thyroid replacement drugs, our girl has regulated. The days of rock hard pellets are behind us, or so I pray.
“We gotta go,” I mouthed to Hugo, who nodded at me while pounding out rhythm and blues on the school piano, playing back up for a couple of guitarists. It was an odd Valentine’s Day. Jules was in Florida and Max was having dinner with his 90-year-old godfather, whose younger brother had died earlier that week. That left just Hugo and me, along with the babies. Rather than cook, we went to the Waldorf school for a potluck and open mic. Leif, who had uncharacteristically clung to me since we’d arrived an hour earlier, softly chanted I want to go home for several minutes before I reluctantly pulled Hugo off the piano.
Once home, I changed Leif into his pajamas. His torso was warm, too warm. I tilted him back in my arms and felt his forehead. Hot. “You don’t feel good, do you?” I asked him and the eyes looking back at me were glassy.
The next day, Lyra, who turned six month’s old on Valentine’s Day, had her latest check up with Dr. M, her pediatrician. Just shy of twelve pounds, Lyra remains in the less than 4th percentile for typical children, but around the 40th percentile for children with Down syndrome. The biggest “problem” with her size is clothing. Those sized 0-3 months clothes are generally for children weighing 8-12 pounds. Some of her clothes this size, especially those with footies, are getting small, but clothes sized 3-6 months are voluminously large on her. The few things that fit well get washed often.
At Lyra’s appointment, I negotiated the supplementing of iron with Dr. M, which she strongly advocates because anemia can lower a child’s IQ (it has to do with oxygenation of the brain). Unfortunately, iron can also cause constipation, which happened with Lyra as soon as we gave it to her. In order to avoid a potential problem, I feel we have created a real one. Constipation is a commonly associated with Down syndrome and something Lyra did not have until we introduced iron to her system. I have taken her off of the vitamins and pointed out to Dr. M that the cereal we give her (Happy Bellies brand) also contains iron.
“Why don’t you try adding some extra fiber to her cereal to get her going again,” said Dr. M and she wrote down a brand name on the “Babies at Six Months” handout. She then said, “Before you go, do you want me to look in Leif’s ears and throat?” Leif was still hot. Some people are sweet when they don’t feel well (Claude and Jules) whereas others are crabby (Hugo, Leif and, to be frank, me). During our appointment, Leif had thrown himself on the ground several times, tried to run out of the room when the nurse came in, pushed the stool to the wall so he could reach the light switch. Thank heavens Dr. M blocks out extra time for visits with children with DS.
“His ears look fine, his nose is clear and I don’t see anything in his throat,” she told me after I wrestled him down for her. Other than a fever and an attitude, Leif was fine. That was Friday.
Two days later, we were at Akron Children’s Hospital’s Emergency Room. By Sunday evening, Leif’s head had become a ramped up mucus factory that poured its products not only from his nose, but also from both his bloodshot eyes. His eyes were slits in his puffy face and he looked like he’d been stung by a swarm of bees. When we put him to bed, he had slept briefly before waking up, screaming in pain. But most concerning, and why we ultimately made the call to go to the ER, was he had refused to eat or drink for much of the day and his lips were cracked and bloodied from dehydration.
Leif was diagnosed with rapid onset, bilateral, acute conjunctivitis and bilateral, acute otitis media or in lay terms: a bad case of pink eye in both eyes and equally bad ear infections in both ears. They put him on Augmentin and because he’s never been on antibiotics before (and Augmentin is really strong), Leif’s eyes cleared up within 24 hours.
What’s This Got to Do with Lyra?
I wear contacts, I’ve had pink eye. You can’t wear contacts when you have pink eye. For me, that’s no biggie, I just wear glasses for a while. But if Lyra gets pink eye and cannot wear her contacts, she effectively cannot see. Recently, my own eye doctor, who also fits contacts on children who have had lensectomies, showed me what Lyra can see without her lenses. In an open container the size of a shirt box, the doctor keeps glass lenses lined upright in several rows, like poker chips. He handed me one of these diagnostic monocles by the tab in its wire frame and told me look through it with one eye closed. It was like looking through glass block. I could see light and color about as well as before, but shape and distance were impossible to comprehend. Were that my vision, I wouldn’t be able to walk safely down an open hallway.
When Lyra is older, she could wear glasses if she needed to. For her condition, however, it would require lenses that are extremely thick and made of glass, not the lightweight polycarbonate most eyeglass lenses are made of today. Right now, she’s too little for the glasses she’d need and taking a break from her contacts would potentially affect her brain’s vision development. In order to literally grow the part of the brain that processes vision, the brain needs the eyes to see, and see well. As I described in the post “I See You and You See Me,” this is why Lyra had her lensectomies at such a young age (six and seven weeks old).
Lyra’s surgeries were dramatic, so it’s no wonder people often ask for updates on her eyes. The good news is that there is not much to report. Her eyes healed from surgery without any complications. She wears extended wear contacts that are aphakic. Aphakia simply means an eye without a (natural) lens. Eyes have lenses that, when working perfectly in pairs, provide 20/20 vision. Thus, aphakic contact lenses (or glasses) are not corrective lenses, but rather replace the surgically removed lenses. Many people, particularly as they get older, don’t have perfect lenses and need either glasses or contact lenses to correct their vision. Less common, and not universally recommended, is refractive surgery in which a corrective lens is surgically implanted over the natural lens to correct nearsightedness.
Lyra’s aphakic contacts do not look like my contacts. It is easy to see them in her eyes—the edges often look like a piece of Saran Wrap that isn’t fully adhering to her eyeball. Also, her pupils are clearly magnified, which makes them look huge, like manga pupils. I asked Lyra’s surgeon about the way her contacts look a week after her second surgery. Something I love about her surgeon is that he clearly gets geeked up when I ask him to explain how what he does works.
“So you wear contacts, right?” he asked and I nodded. “Well, your prescription is probably somewhere between three and six.”
“It’s about a four,” I said.
“Lyra’s is a 20. And that’s why they are shaped this way,” he said as he showed me the lens he was about to place in Lyra’s left eye. On the tip of the surgeon’s forefinger the contact rested as it would in her eye. He held it up so I could see it in profile. My contact lenses when viewed from the side look like the arc of the sun just before it sets on the horizon. Lyra’s look like a UFO because the center of the lens pops up, like the control room where the aliens sit when they fly their saucer ships. That’s where all the magnification is and why her pupils look so big.
The pupil on Lyra’s right eye is not round but elongated at the top, looking a little like a cat’s eye. A small portion of her iris, just above her pupil, was unintentionally removed in her lensectomy. When I pointed it out to the doctor, he said it happens and her blue eyes made it more noticeable. He didn’t seem concerned, but I was and wanted to know if it would affect her vision.
“No, not at all,” he said. “She’ll just have this one unusual looking eye. You know, the other night I was watching the news on TV and I saw a reporter who had the same thing. Years ago, that reporter would have tried to hide her elongated pupil with a cosmetic contact, but we’ve come a long way. Your daughter will be fine both physically and socially.”
Early on, the surgeon told us he’d keep Lyra in contacts as long as she’d tolerate them, forever even. I thought by “tolerate” he meant something medical, but he didn’t. It became clear to me what he did mean when I spoke with another mom in the waiting room just before Lyra’s contacts were cleaned for the first time. This woman’s daughter, who does not have Ds, was born with a cataract in one eye.
“After my daughter’s surgery,” she told me, “she wore a contact, but I couldn’t get the thing in or out, you know? And it popped out all the time! I mean she would just scream and I couldn’t hold her still, so they gave her the glasses, but she kept pulling them off. Finally they agreed to do the surgery. But now I don’t think she’s seeing in that eye and that’s why we came in.” A pretty child of about three, she wanted to see my baby. Seated with Lyra in my lap, I looked into the girl’s big, brown eyes when she came over to us. Her left eye looked blind.
“That’s because her mother has a hard time getting her to wear a patch on her good eye,” said the surgeon. In the exam room, I told him how upset, no, completely freaked out I was at the idea that after the surgeries our Lyra could still be blind. “Things are ironically easier for your daughter because she had bi-lateral cataracts. She doesn’t have a dominant eye.” As for the difficulty that mom had changing her daughter’s contact lenses, the surgeon told me that because of Lyra’s Ds her eyelids were very different, making it harder to insert and remove the contact lenses. Therefore, he told me, they will be conducting the cleanings in his office for the foreseeable future.
Okay, that was a relief to hear. But then we went through what was to become a nightmarish monthly ritual:
1) A nurse’s aide comes into the exam room and has me lie Lyra down on my lap with her bottom against my tummy and her head near my knees. After thoroughly washing her hands, she tries to hold Lyra’s eye open with one hand so that she can place a small suction cup (designed to adhere to contact lenses) on Lyra’s contact. As soon as the aide tries this, Lyra clamps her eyes shut and screams like she’s been cut with a scalpel.
2) The aide leaves the room and comes back with a nurse. The nurse pulls an optical speculum out of a drawer and, after two or three attempts, manages to get it properly in Lyra’s eye. This is never a pretty site. With her eyelids forced open, the aide again tries to suction out the contact. It still doesn’t work, so she instead tries to use a long cotton swab to push the lens off of the center of Lyra’s eye. Once, this made the eye bleed. All the while, Lyra is screaming and sweating as I continue to hold her arms to her sides and the nurse firmly holds her head.
3) After several attempts, the aide again leaves and brings back the surgical fellow, a woman from India, who attended both of Lyra’s surgeries. Using a different speculum, the surgical fellow quickly removes both contacts. As soon as the second lens is out, I pull Lyra up and hold her on my chest to calm her down.
4) Putting the cleaned contacts back in is almost as difficult as getting them out and only achieved, again, by the surgical fellow.
“I won’t do it next time,” I told Max after the second time I had to be the thug who held Lyra down while they tortured her in the exact same fashion two months in a row. “Her appointment to clean her contacts next month is at 8 a.m. You can take her before you go to work.” When he took her at the end of January, I told Max before he left, “Insist they bring the surgical fellow in first, not last.”
“It wasn’t that bad,” said Max when he called me after the appointment. “The surgical fellow was in surgery, so they sent in the nurse’s aide and she got the first lens out on the second try.” Unbelievable. I certainly want this to be as easy and painless as possible for Lyra, but it seemed unfair that it had been such an ordeal when I had taken her. Perhaps the team had gotten their technique down. Perhaps Lyra has become better accustomed to having her eyes messed with. But I’m afraid she did worse with me because she felt my emotional distress at holding her down against her very strong will.
“Also,” said Max after returning from Lyra’s breezy appointment, “the doctor upped the strength of her lenses and we both agreed that her left eye was crossing in and so we have to start patching her right eye for one hour every day. Oh, and she doesn’t have to get her contacts changed for two months now.”
I don’t know if it is the increased strength of her new lenses or the fact that we are now several months past her surgeries and her brain has had time to catch up to the visual input, but the way Lyra sees has changed recently. Maybe it’s the new lenses working together with the more developed brain. Whatever the underlying causes, it is as though Lyra has awakened. She quickly turns towards the direction of sudden sounds. She recognizes people and rewards them with full-faced smiles.
We find we do best when we treat patching Lyra’s eye the same way we do exercise: Do it first thing in the morning or it probably won’t happen. And because of the little girl I met in the waiting room at the surgeon’s office, you can be sure we do. Lyra fusses most of the time while the patch is on and after about half an hour, she often shuts her left eye. She isn’t sleeping, but seems to be telling us, “If you don’t take this damn patch off of my good eye, I’m outta here.”
Keeping Her Eyes Clear
Pink eye is extremely contagious. And even though antibiotics might have rendered him non-contagious, the fact that Leif cannot keep his hands off of Lyra makes me anxious. Five days after Leif began taking Augmentin, I took Lyra to her surgeon’s office to make sure she didn’t have conjunctivitis. I had lost all objectivity and her eyes looked symptomatic to me. We saw a different surgeon in the practice and he told me Lyra’s eyes were clear, but gave me his cell phone number with instructions to call if anything changed.
That same afternoon, my eye doctor told me I had a mild case of bacterial conjunctivitis. Mild enough that he would not have prescribed antibiotics except that I live with Lyra. The next morning, the same doctor told Max that he had a pretty bad case of it. That’s three out of six of us currently living in the house. My hands snag our clothes when I fold laundry because they are so dry from how much I wash them these days.
I love winter. I love the snow and the deep freshness of cold air. I love being cozy in a warm house with a fire in the fireplace or pies baking in the oven. But I want this winter to end. I cannot remember a cold and flu season that has come close to affecting us as much as this one has, where all of us have been sick more than once. Leif is still not 100% himself and it’s been two weeks since he first came down with a fever.
The next day the mercury is over 50 degrees Fahrenheit, you can be sure the windows of our house will be wide open. Meanwhile, we wash everything we can and often. Linens, hands, surfaces, faces. Knock on wood, so far it’s working and Lyra remains clear eyed.
The day after Lyra was born, I called my obstetrician, who had willingly provided prenatal care and medical back up for my home birth. And I explained that while otherwise healthy, Lyra appeared to have Down syndrome. Within minutes, I received a call from the pediatric practice she uses for her own children telling us to come in immediately. Lyra was seen before she was even 24 hours old. The doctor who examined our newborn daughter gave us the necessary referral to the Genetics Center at Akron Children’s Hospital where we went the following day to confirm that Lyra has Down syndrome.
True Confession: My children do not go to a pediatrician
Okay, so maybe it’s not such a biggie, as in confessional biggie, that my children go to the same family practice as I do. But let me add that I have never scheduled “well baby visits” for my children. My kids are, for the most part, fabulously healthy. I take them to the doctor, or in our case the nurse practitioner, when they are sick or need a physical for sports. How my children are growing compared to other American children was never something I was interested in enough to spend time in an office and pay good money to find out.
Frankly, the point of these so-called well baby visits is primarily to keep the American Academy of Pediatrics (AAP) vaccination schedule, which I do not follow. Vaccinations have been a controversial issue since before Claude was born nearly 20 years ago. Like many things (such as hospital vs. home birth, educational approaches, how the food we eat is grown or raised), I have questioned the status quo on vaccination, but I also avoid zealotry. Proponents and opponents of vaccination are both ardent in their opinions. I am not opposed to vaccines, yet neither do I follow the recommendations of the AAP. I wait until my children are a year old to begin vaccinating them (except for Hib); I don’t give them all the vaccinations that are recommended (most children are not at risk of contracting hepatitis, for example), and I do not have them administered all at once. I am not advocating my approach for other families, but rather this is the compromise I have come to for my family after much research and many conversations with a wide array of health care providers.
Max and I soon understood, however, that with Lyra we would have to adjust our approach. This included finding a pediatrician with whom we felt we could develop a relationship as we encounter health care concerns with our daughter that we’ve never had with our other children. The pediatric practice my obstetrician sent us to seemed appropriate for a number of reasons. First, since they are affiliated with Akron Children’s Hospital, it presumably would be easier to coordinate Lyra’s care and records with other ACH docs, such as her ophthalmologist. Second, one of the pediatricians in the practice has a nephew with Ds, something I had learned through the Upside of Downs support group. Finally, it seemed appropriate precisely because it is the practice to which my OB takes her own children, as she is the physician whom I have trusted through two “advanced maternal age” home births.
But then, after our first visit, I had to call this pediatric practice without the assistance of my OB. On three separate occasions when I called, the phone rang once and then I was put on hold without any human interaction. For up to 15 minutes, I listened to techno hold-music that was regularly interrupted by the recording of a woman’s voice that went something like this:
Letters to keep heat on in the home are only signed during the months the state accepts the letters and will only be signed if there is a medically compromised child in the home.
After hearing this condescending message up to 30 times per call to the office, I felt like it was my heat that was going to be turned off and that I really ought to argue with someone about it.
The last time I called that pediatric office was to ask for a prescription to have Lyra’s hearing tested. When a live human being finally answered, she told me I would need to leave a message on the nurses’ line and someone would call me back within 24 hours. I left the message but never, ever received a return call. No matter how qualified their physicians might be, a practice with a phone system that bars access is not a workable option.
The Continuum of Jewish Women
One of the beauties of middle age is some narrative arcs reveal themselves. And so it is that at nearly every significant, if not extremely stressful, juncture in my adult life, Jewish women have helped me out. I can’t say why that is, though I no longer believe it to be coincidental because it now seems predictable. Here are three examples from a much longer list:
1) University. When I wrote my undergraduate thesis in religious studies at Ohio State University, my departmental advisor was a committed devotee of the then-rampant theory of Deconstruction. He felt I worked like an old-fashioned historian, one who looks for facts and truths. While I understood irreducible truths are hard, if not impossible, to find in human interactions and events, I was never able to discern how he wanted me to approach my project. I met with him regularly and left every time feeling frustrated and rather dumb. In the end I went with what I knew how to do (hypothesis, research, results), and my advisor was unwilling to approve my thesis. On my thesis committee was a history of art professor with whom I had taken four classes and who later became the dean of the graduate school at OSU. While strongly disagreeing with my advisor, she told him she would work with me to craft my thesis to his satisfaction. And she did, even though her own scholarly research and writing, along with teaching, made her one of the busiest professionals I have ever known. Ten weeks later, my thesis was unanimously approved, even though the substance of the work remained the same.
2) Children. After several frustrating years of trying to understand why my oldest son, Claude, wasn’t learning in school, a triumvirate of Jewish women helped turn things around. An Orthodox psychologist first diagnosed his dyslexia and then she helped me to navigate his remediation. For several months, Claude worked every Sunday morning with an Orthodox occupational therapist at her home in an Orthodox neighborhood in Cleveland (during his appointments I went to the neighborhood bakery and bought seeded corn bread). For several years, I took Claude twice a week to the home of a tutor I found through the American Dyslexic Association, who, yes, is also Jewish. After Claude finished tutoring, Jules too was diagnosed with dyslexia and back we went. With little break in between, I’ve been going to this woman’s house for a decade. Without these three women, I don’t know how I would have facilitated my boys’ mastery of reading (mastery may sound like hyperbole, but Claude scored 34 in reading on his ACT, which is nearly perfect).
3) Divorce. There is an aphorism in the legal profession that clients choose attorneys who have similar personalities to their own. Jerks pick jerks, efficient types pick efficient types, et cetera. I like this adage because my divorce attorney is a class act who worked with me for just shy of four long years (including post-decree enforcement). Highly regarded by her colleagues and the courts, she and her associates are hard negotiators who worked to end things quickly without sacrificing either what my boys and I needed or an ounce of their own professionalism. That the process took so long is due largely to the fact that the defendant went through a series of four attorneys and with each succession, we had to start all over again. Divorce sucks. A protracted divorce with someone driven by animosity is a nightmarish ordeal. I can’t imagine how I would have gotten through it with any other attorney.
Back to finding a pediatrician
Through the Upside of Downs organization I have met a number of families from Medina whose pediatrician has an eight-year-old daughter with Ds. People in Akron don’t often go to Medina, 15 miles west, for things like doctors, even though they commonly drive 40+ miles to physicians in Cleveland. I decided to meet Dr. M and after the first call, I knew we had found our practice. The person who promptly answered the phone also scheduled our appointment, asking me, “Dr. M loves patients with Down syndrome and she schedules longer visits with them, is that okay?” When Lyra and I went to that first appointment, Dr. M spent over an hour and a half with us. At the next appointment, only a couple of weeks later so we could monitor Lyra’s weight, Max came too. Again, Dr. M spent another hour and a half with us and she told Max, as she had previously with me, “I’m a New York Jew and I’m just gonna tell you what I think.” Well, of course she is.
And what does Dr. M think?
She thinks we can have a respectful dialogue about vaccines and she backs up her recommendations with data. Just as importantly, she doesn’t try to make me feel like a bad mother for not following the standard of care on this issue.
She thinks that the more intelligent the parents, the more likely a child with Ds will have a higher IQ, but the kids with Ds who have higher IQs also have greater rates of ADD. “I know what you’re gonna ask,” Dr. M said when I was going to ask what was the highest IQ we could expect, “but first you tell me the highest level of education you and her father have.” It was only after I answered that she told me the correlation between parental intelligence and that of children with Ds.
She believes in pushing early reading because it comes easily to many kids with Ds and not only does it give them another way to communicate, it makes them feel good about themselves. Note: Many kids with Ds read by age three. They are visual learners with strong short-term memories.
She believes in physical and speech therapies and wrote prescriptions for me on our second visit. Crawling strengthens the brains of all kids, making it particularly important for kids with Ds to learn. But kids with Ds often don’t crawl without intervention (they scoot or roll to get where they want to go). Speech therapy involves anything related to the mouth and we have not had much success in getting Lyra to take a bottle.
Basically, Dr. M believes in getting in there with all available resources and pushing these kids to be the best they can be. In so many ways, it is little different than what I learned to do with Claude and Jules to overcome their dyslexia. It doesn’t mean abandoning all else and focusing our entire lives on Lyra, but rather incorporating into our daily lives what will help her develop and succeed to her highest potential. For years, driving to school with Claude and Jules has been the time to practice sight words. Whenever I sit with Lyra in my lap, I move her around in ways that help strengthen her back and core muscles. Not the entire time, but a little here and a little there.
At our last visit, Dr. M went over the results of the echocardiogram Lyra had in late November. “So they think there’s a shadow here,” said Dr. M as she drew on the exam table paper a box divided into four sections and then told me to imagine it was a heart. Pointing to where the shadow was on Lyra’s echocardiogram, she said, “This is the patent foramen ovale and it is found in all fetuses because they are not using their lungs and, therefore, the heart circumvents the lungs in utero. After the baby is born, this hole closes up in the first weeks of life. Typically. But in 20% of adult autopsies on the general population, this hole is still there. So, we’ll check again in a few months. Other than finding nothing, this is the best result you could get on her echo.”
Yes, that’s how she talks and it comes out rapid-fire fast. I love it. Hit me with more than I already know and if I don’t understand, I’ll ask. If Lyra really does have a patent foramen ovale hole, it will likely close on its own. If it doesn’t, that doesn’t necessarily mean she’ll need it surgically closed. But if she should, it is not open-heart surgery, which is hard on a patient. Instead, foramen ovale holes are surgically closed by going through a vein in the artery.
“So let me get this straight,” said Dr. M at the end of our last visit, “her heart is good, her hearing is perfect, her growth is average. Other than the cataracts in her eyes, it looks like this kiddo has no other major health concerns, right?”
“Yep, none that I am aware of,” I said.
“You are really, really lucky, you know that?”
Yes, yes I do. We are very grateful that our daughter does not have any of the many serious medical conditions that often accompany those diagnosed with Down syndrome. Max and I frequently say so to each other. But we still have a child with a genetic disorder and we are lucky because of the enormous support we have in our community as we meet the needs of our youngest child. Not only the professionals, like Dr. M., not only the other families we’ve met through the Upside of Downs, but people who are part of our wider community and have been since before Lyra’s birth. Friends from the Waldorf school, friends from our professional lives, friends who are just friends—so many of whom have step forward with a kind word, a meal, prayers, offers to transport other children, teach us all sign language. Our day care provider, who performs reiki and went to speech therapy with us, so loves Lyra that I don’t ever worry about leaving her.
I have at various times in my life felt isolated, even when among others. This is not one of those times. If, as I wrote in my last post, Lyra galvanizes us as a family, she also resonates outside our family, revealing to us just how we are connected to and held by our larger community. For this, we are indeed really, really lucky.
In the roughly three months in which I’ve been writing this blog, the WordPress.com stats reveal far and away that the most popular posts are those about Lyra. While Whoopsie Piggle will never be exclusively about our daughter, I have decided to include periodic updates on her, titled, “Lyra’s Latest,” and, like today’s post, will have a secondary title regarding the specific update. I came to this decision while writing about the past few months of Lyra’s life, which made for an unreasonably long post—even for me. This week I plan to post a handful of “Lyra’s Latest,” cut and refashioned from that intial tome of a post.
* * *
Here is a near verbatim conversation I have several times a week:
Friendly Stranger: Oh, what a sweet baby, that’s a new one! How old is she?
Me: Five months.
Friendly Stranger: Really? Oh, my, is she small. Was she a preemie?
Friendly Stranger: How much did she weigh at birth?
Me: Seven pounds, ten ounces. She has Down syndrome and they tend to be smaller.
Friendly Stranger: Really? Oh, bless her heart, she’s so beautiful.
I think so too, but Lyra is not beautiful in the conventional sense. For one thing, she’s still pretty bald, as were all my babies for the first six to twelve months of life. And some of these well-meaning strangers tell me Lyra doesn’t look like she has Down syndrome, which in my opinion isn’t true. Her eyes have small openings and turn slightly upward in the outer corners as do those of most people with an extra 21st chromosome.
A dear friend, whom I’ve known since I was fifteen, has a niece with Down syndrome. She called me a few days after I had written about Lyra’s diagnosis on Facebook. But first, she called her sister to ask advice on what to say or, perhaps more importantly, what not to say. I have had the occasional person apologize when I told them Lyra has Ds. Just last week someone asked me if I was devastated when I learned. No, I wasn’t but neither am I offended by these questions and comments. I put them into the same category I put the things people say to someone who is undergoing a difficult time in life, be it the loss of a job, the loss of a loved one, or a divorce—it’s better to say the wrong thing than to say nothing at all.
On the other hand, many people tell me how all those they’ve known with Ds are incredibly loving. While I cannot speak to another person’s experience, I hesitate to categorize any group of people so broadly. It reminds me of the “noble savage” theory taught in anthropology classes. It is easy to dismiss the humanity of a group of people, such as indigenous populations, if they are described as entirely savage (generally prior to being conquered) or more advanced spiritually (generally post-conquest). Kids with Ds have behavior issues just as kids without Ds do. A mother told me that her daughter with Ds would use her hypotonia to make her body entirely limp when she didn’t want to do something. Ever hear of “dead weight?” It’s used to describe how heavy someone is to carry when they are unconscious and what a child with Ds is like when they make themselves go limp. Imagine that as a tactic in the arsenal of a toddler’s tantrum. In public. For now, Lyra is too young to have tantrums and so small it wouldn’t matter if she did.
When someone apologizes because I’ve told them my daughter has Ds, I take it as an acknowledgement of the work I have ahead of me that I had not anticipated when I was pregnant. Like my mother-in-law once said to me, “No matter how sweet they say people who have Ds are, it is not something you asked for.” No, it wasn’t. But there are many things that a child can be born with that are not so easily diagnosed as Ds. Most autistic children do not begin presenting their symptoms until they are toddlers. And children with mental illness often appear perfectly healthy until adolescence or even later. The emotional journeys of parents who have children with autism or mental illness is as challenging, if not harder in many instances, than having a child with Down syndrome. The test for Ds is not subjective, it is clear and many families, like us, know their child’s diagnosis almost immediately after birth, if not before. Because I have two sons with learning disabilities, I have a sense of the anguish of parents who know something is not quite right with their child, but for years cannot figure out what the diagnosis is and, therefore, how to provide the appropriate support.
As for her size, at her five-month check up with her pediatrician, Lyra was one ounce shy of weighing eleven pounds. That puts her in the fourth percentile on the growth chart for typical children. But there is another growth chart, one for children with Ds. On that chart, Lyra is in the 40th percentile for weight, 50th for height and 60th for head circumference. In other words, pretty average. My boys, on the other hand, were all big babies; Hugo weighed ten pounds at birth and Jules was just two ounces smaller. None seemed to lose any birth weight and people often assumed my newborns were at least three months old. Before Lyra, I’d never used newborn-sized clothing for any of my babies. At five months plus, Lyra still wears some newborn items and nothing bigger than size 0-3 months. It’s like having a baby doll. In fact, more than once have I been asked, “Is that a real baby or a doll?” Seriously.
Most of the time, I don’t notice Lyra’s size. She’s just our baby. It is when I see other babies that I realize how diminutive she is. At the home daycare where Leif and Lyra go each week, there is a family with whom we share some uncanny similarities. The mom has the same first name as me, though she spells hers “Hollie.” Last year, she and her husband were, like us, expecting their fifth child in August. Baby Jack is two weeks older than Lyra but when I see them together, they look months apart. For one thing, Jack is a third as big as Lyra, weighing more than 15 pounds. He has huge eyes and is developing beautifully. Next to him, Lyra looks like the newborn people mistake her for.
And really isn’t that how it is with much of life? By comparison with others, we gain perspective on our own lives. What we do with that perspective is up to us—whether we open ourselves to envy or just observe an apparent difference, understanding that other differences, as well as similarities, exist. Throughout my childhood and into my 20s, I envied the lives of other people—from friends and family to complete strangers. I used to wish I’d been given up for adoption at birth or given to my grandparents to raise, so that I could have had a different life. But as time has passed and I’ve watched our lives unfold, I see everything before led to where I am now, with the family that is far more than I had ever imagined. Sometimes that means far more chaos and complexity than I’d imagined, but for the most part it means more love and contentment. And our wee teeny peanut, like some mighty-mini superheroine, galvanizes the seven of us as a family.
Definition of GALVANIZE
a: to subject to the action of an electric current especially for the purpose of stimulating physiologically <galvanize a muscle>
b: to stimulate or excite as if by an electric shock <an issue that would galvanize public opinion>
: to coat (iron or steel) with zinc; especially: to immerse in molten zinc to produce a coating of zinc-iron alloy
“Is there a vagina?” I immediately asked the midwife.
After a summer of crop-killing drought, it rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning and opened our windows and a soft breeze cleared out the re-circulated air. Sitting on my side of the bed, I looked out the screen door to our veranda while I waited for each contraction, watching the soft rain, breathing in the fragrant storm. When I began to push, just a couple of hours after hard labor had begun, the storm seemed to move with me. Still falling in straight lines, the rain grew heavy and splattered noisily on the heat-hardened ground. Fifteen minutes later the baby emerged, the rain stopped and, as unbelievable as it sounds, the clouds parted just enough for a shaft of sunlight to settle onto the soaked lawn.
My fifth child is my first daughter. Or so the doctors had told me during a level II ultrasound eighteen weeks into my pregnancy. But reading an ultrasound is a subjective art and there are no guarantees of the analysis. We knew this.
Because I was 46, I underwent many prenatal tests while expecting my last child. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and beautiful is better than good. Having decided we would not terminate a pregnancy if the fetus had Down syndrome, my partner and I passed on an amniocentesis. More importantly, I felt certain I would lose the baby if I had an amnio. Like me, my grandma, who mothered me unlike anyone else, had four boys. Her only daughter died at birth because of the Rh blood factor. Grandma had negative blood and, like her first child, her baby girl’s blood was positive. At the birth of her first child, a boy, Grandma’s blood created antibodies against his positive blood type, which remained in her body and, later, killed her daughter. I, too, have negative blood and my daughter’s is positive, but since the 1970s there has been a remedy for this. After each of my babies’ births, I was given a RhoGam shot that prevented my body from building antibodies to positive blood.
Grandma kept trying for a daughter, even when my grandfather did not agree, but she only had boys. When I learned my fifth child was female, I believed an amniocentesis would cause me to lose my baby just as the Rh factor took Grandma’s daughter. It isn’t logical, I understand, but I felt very strongly about this connection. I still do.
Bluish and slippery when the midwife handed her to me, the baby screamed long and loudly. Her eyes remained closed as I began nursing her. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect. When she finally opened her eyes, I mentioned that they looked “Downsy.” Then I saw the bulk of skin on the back of her neck, and then the ghostly pallor of her pupils. I mentioned these things to the midwife, who had listened to Lyra’s heart the moment she was born, and she told us she’d fully examine the baby in a bit, to just hold her for a while. In the middle of our bed, Lyra’s father and one of her brothers huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.
My daughter has Down syndrome. And, when she was born, she was blind. The murky white of her pupils, the color of breast milk in a glass bottle, was due to bi-lateral cataracts. Leaving me to revisit what I thought I desired in a daughter, what it is to have Down syndrome and, ultimately, what it means to be fully human.
The first weeks of Lyra’s life whirled past us as we dashed to one appointment after another, first verifying her Down syndrome (DS), that she had no life threatening conditions (as can often be the case with babies with DS), and, most urgently, taking care of the cataracts in her eyes. Once her eyes were surgically cleared, we had an impending presidential election to absorb so much of our attention—along with daily life in a family of seven.
We made ourselves busy. Too busy to really take in what it means to have a child with Down syndrome. Too busy to spend time with uncomfortable questions as they slither up from the cracks of my mind. On the day Lyra was born, the midwife wisely counseled us to stay off of the computer for a while, to just spend time with our daughter. But just as important was to find support and accurate information as to what a diagnosis of Down syndrome means today in the United States.
I wish I had worried less about who my daughter would become and enjoyed the baby she was. ~ a mother, quoted in Babies with Down Syndrome
The test for Down syndrome is a yes-no test. Your child either has an extra 21st chromosome or she doesn’t and the results are back in as early as 48 hours. Lyra was born at home on a Tuesday. On Friday, we received the call confirming her diagnosis. But no test can tell you the severity of your child’s Down syndrome. You just have to wait and see.
There are, however, varieties of Down syndrome, including something called Mosaic Down syndrome in which not all of the cells contain the extra 21st chromosome. To learn what type of DS a child has requires a karyotype test, for which it takes many weeks to receive the results. Even though about 95% of children with DS have Nondisjunction Trisomy 21, or an extra chromosome in all of their cells, for nearly three months, I held on to the odds that Lyra was one of the 5% with Mosaic DS. She has few markers, I reasoned with myself, she’s developing beautifully and while there are no guarantees that a child with Mosaic DS will have milder symptoms, fewer medical problems or an easier life, I wanted it to be so. I wanted it because maybe, just maybe, Lyra would have fewer struggles. And, yes, be more typical.
Which is just magical thinking.
In a healthy mind, magical thinking can help us cope with something very difficult. In 2005, Joan Didion published her memoir, The Year of Magical Thinking, about her life in the months after her husband died suddenly of a heart attack. In essence the first three stages of grief on the Kübler-Ross model—denial, anger, and bargaining—all represent an element of magical thinking. The last two of the five stages, depression and acceptance, strike me as the points at which reality sets in.
Did we grieve because Lyra has Down syndrome? I know I did. But not all the time. Max immediately saw her as perfect and has continued to do so. The constant refrain from all of her brothers was and is, She’s so dang cute! Mostly, I enjoyed her for the baby she was, sweet and easy to hold, but I cannot help but wonder, as a child and adult, who she will become. At three months old, she only weighed 9lbs. 12 oz., which is less than two of my boys weighed at birth. She didn’t hold her head up as well as they did at three months due to hypotonia, or low muscle tone, which is a common characteristic of Down syndrome. But she remained in the range of normal development, even when compared to a typically developing baby her entire first year.
I have heard many people with Down syndrome children speak of uncanny coincidences, odd and, yes, magical things that occur with and around their children. Martha Beck wrote an entire book on it, Expecting Adam. When word got out that Lyra has DS, many friends recommended the book and one gave me a copy. Beck and her husband were in PhD programs at Harvard when they discovered they were pregnant with their son Adam, who has Down syndrome. Odd things happen throughout the pregnancy that Beck ultimately decides are very spiritual in nature, perhaps the work of angels or other spiritual beings.
On a warm day in late October when I had just finished reading Expecting Adam, I was overwhelmed with my day’s schedule, our clutter-filled house, the children needing to be reminded of things like, shut the door when you come in. Where are my angels? I have a child with Down syndrome too! I thought petulantly. That evening, I took two-month-old Lyra and went to a Down syndrome support group meeting, leaving my two-year-old son, Leif at home with his older brothers. As soon as I pulled into the parking lot where the meeting was held, my son Hugo called me.
“I don’t know what happened,” he said, fear in his voice.
“What?” I asked.
“Well, I was in the living room and Jules was in the kitchen,” he said.
“Yeah, so?” I asked.
“Leif had been in the basement, at least I thought he was in the basement, watching a movie,” Hugo continued.
“Okay, what is it?” I asked holding my cell phone ever tighter in my right hand.
“Well, I don’t know exactly what happened,” said Hugo and I wanted him shake him.
“What the hell happened?” I yelled.
“You don’t have to yell!” Hugo snapped back. “Leif must have gone out back through the porch and, uh, somehow the gate wasn’t locked because, well, this lady came to the door with Leif. She said he was on the street.”
We live on the busiest street in a small city. There are four lanes of traffic in front of our house. Across the street is a large church that has a playground where we often take Leif. A few days later, I learned the entire story. Leif had started to cross the street with no regard to traffic. A woman driving down the street saw a man, who was walking on the sidewalk, stop and pull Leif back onto the sidewalk. And then the man continued on his way. When the woman in her car saw that Leif didn’t belong to the man who’d pulled him to safety, she parked her car, got out, and went up to our little boy. She asked him where he lived and brought him home. Later, the woman told a friend the story. The friend knows us and called me.
I read the paper every day. Bad things happen all the time. Two strangers likely saved my son’s life. Was it the work of angels? Fate? Or mere coincidence? I can’t say. But I hung up the phone and thought of my earlier complaint. “I’m sorry, I take it all back! We’re good! Thank you!” I said outloud.
Max and I both believed we could have a child with special needs if we were audacious enough to try for a second baby together. At least, we occasionally mentioned it to each other in the year after we had Leif, who was born without any diagnoses when we were 44 years old. I wondered if trying again was hubristic, was I daring the gods, did I think I was somehow superior to the odds of having a baby with an extra chromosome, which were high? No, I did not. In fact, I quietly believed the odds were more than high. I believed they were certain.
Clearly many would see this as an unacceptable outcome because more than half the women in the U.S. who learn they are carrying a fetus with Down syndrome elect to terminate the pregnancy. Others, like Martha Beck, may see having a child with Ds as a gift, a reward for parents who might feel chosen by a higher power. To me, it’s neither.
As with all my children before I conceived them, I felt that there was a child out there, the last one, waiting to come to our family, and that it was my girl. Max would also on occasion say things like, “It would be nice for Leif to have a sibling close to his age; he’ll be so young when Jules goes off to college.”
And so, when Leif was just two months shy of his second birthday, we bought an ovulation kit and Lyra was conceived the first month we used it. On Thanksgiving Day.
But What Can We Expect?
On Lyra’s second day of life, we had a long discussion with a genetic therapist. She took her time with us as we began to learn that the expectations for children with Down syndrome are radically different than they were when we were growing up. For example, consider this fact: When I graduated from high school in 1983, the life expectancy for someone with DS was 25. Now it is 60 and increasing.
Today, children with Down syndrome benefit from early interventions including speech, physical and occupational therapies. There are highly organized support groups nationwide including, in Northeast Ohio, The Upside of Downs, a group who has been tremendously helpful to us from the moment we first contacted them. There are also national organizations including the National Down Syndrome Congress whose video, “More Alike than Different,” explodes old notions of what adults with DS are like and what they can do. As does the documentary movie, Monica and David, about a married couple, who both have DS.
The success stories are encouraging and truly heart warming—I easily become weepy watching them. But like buying a new car and suddenly seeing everywhere the same car, in the same color, it now seems that I see children and adults with Down syndrome all the time, not just at functions for families in the DS community, but as I am out in daily life. And clearly not all of them function as highly as the young people in the aforementioned videos.
The truth is none of us know what our journey will be with any of our children, whether or not they have Down syndrome. I have two sons with severe dyslexia who have required significant interventions. I have one son who turns to gold anything he sets his mind to—academics, sports, music, visual art. And it is that son who regularly commandeers immense amounts of my parenting time, attention and certainly energy. I could not have predicted any of these journeys with my oldest three sons when they were babies in my arms. I love none of them any more or any less for who they have become. Rather, much of the joy in having a large family is getting to watch both how similar and how different each child is from the others.
With Lyra we are immediately aware that we have a unique journey. There is a helpful analogy often told in the Down’s community about giving birth to a baby with Down syndrome. It’s as though you were preparing for a trip to Italy—you found your dates, purchased the items you thought you needed. Perhaps you’ve been to Italy before and are looking forward to returning. Or maybe it is your first time, but friends of yours who have been to Italy before tell you what to expect, how to plan for your trip. The big day comes, you board a plane and make the long, tiring flight to Italy. But when you disembark, you find yourself in Holland.
We arrived in Holland with Lyra, because we quickly knew she had Down syndrome. And like customs officials at international airports, in the first year of her life, we met with an onslaught of medical officials as we worked to make sense of where we were. Even after more than a year of familiarizing ourselves with our situation, we don’t yet know on which roads our journey with Lyra will take us or what cities we will end up in. Only as she grows, and we learn how having that extra chromosome specifically affects Lyra, will we be given our unique map to follow in this territory that in one short year was no longer felt foreign.
“Your daughter sees like a newborn,” said her eye surgeon, “even though she’s two months old.”
Two months old? Isn’t that the same as newborn or at least, newly born? Well, yes, in terms of adjusting to another child in the household. But in terms of brain development, two months old is, well, getting up there.
Lyra was born on August 14 with many markers of Down syndrome (DS) and cataracts in both eyes. Because I am 46, I underwent many prenatal tests, except an amniocentesis, while expecting Lyra. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when I had a fetal echocardiogram, the cardiologist said everything looked beautiful and, “beautiful is better than good.” Having decided we would not terminate a pregnancy if the baby had DS, Max and I passed on an amnio.
Superstitiously or intuitively, I was certain I would lose the baby if I had an amnio. My Grandma Dorothy, who was a mother to me, had four boys and I have four boys. Her only daughter, her second child, died at birth because of the Rh blood factor. Grandma had negative blood and her baby girl’s was positive. I too have negative blood and my daughter’s is positive, but since the 1970s there has been a remedy. After each of my babies’ births, I was given a RhoGam shot, which prevented my body from building antibodies to positive blood.
Grandma kept trying for a daughter, even when my grandfather did not agree, but she only had boys. I, too, kept trying for daughter (albeit with full support from my partner), and when I learned my fifth child was female, I felt an amnio 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 emotionally very strong about this connection. I still do.
Lyra was born on a Tuesday. On Wednesday, we were squeezed into an appointment at a pediatricians’ office affiliated with Akron Children’s Hospital (ACH). They referred us to ACH’s pediatric geneticist whom we saw on Thursday and before we left, a vial of Lyra’s blood was drawn for genetic testing. On Friday, the blood results confirmed Lyra’s Down syndrome. The following Monday we saw our first pediatric ophthalmologist, who sent us to a second surgeon, who immediately scheduled Lyra for surgeries at the tender ages of six weeks and seven weeks.
Why so young? Because a newborn’s brain is bubbling with growth and without any visual input, Lyra’s brain would not have developed all the necessary components to process what it is to have sight. The same can be true of hearing and the other senses. Neurologist and author Oliver Saks has written accounts of adults regaining hearing only to be miserably confused and want to return to the deaf world their brains’ knew and understood. In the Val Kilmer film, At First Sight, a blind man has an operation to regain his vision. In a poignant scene, he cannot make sense of glass and ends up breaking a window.
And that’s how Lyra came to have eye surgery at the tender age of six and seven weeks. Each eye had to be dilated for a week post-surgery to minimize scarring after which she began wearing contact lenses. She’s too young for surgical implants–her eyes are still rapidly growing. Her contact lenses are similar to mine and will be cleaned monthly and replaced every three months. The correction, however, is not at all similar—I don’t see very well without my glasses or contacts as my prescription is about a -4. Lyra’s prescription is a +20.
Oddly, I did not think of Lyra as blind until the first cataract was removed. But she was. When she was a month old and coming out of the newborn sleepiness, we noticed her eyes were starting to wander around, each rambling about in its socket. Her brain was becoming the brain of a blind person.
Only one in 10,000 kids with Down syndrome are born with cataracts, though most kids with cataracts have DS. Of all the possible and serious medical problems attendant to DS (heart problems of varying degrees of severity occur in forty to sixty percent of people with DS), we are grateful cataracts is all Lyra has to deal with. We felt that way immediately and said so to the ophthalomologist the first time we met him. Just as soon as he put her second contact in her left eye, her eyes began tracking in sync, her brain quickly discovering how to process all the visual stimulation she is now receiving.
She has now been wearing both her lenses for one week and it is as if she has been awakened. She searches for our faces when she hears our voices, looks at our eyes and smiles. I loved my blind girl fiercely, but this smile of recognition by my now seeing daughter is incomparable to any other I’ve known. No lover has melted my heart with a single gaze the way this recently born peanut has. Many years ago, when my big boys were wee, I learned a children’s song in which the verse goes, “I see you and you see me, la-la-la-la-la-la-la.” When I sing it to Lyra, as I often do lately, it is not a sweet, meaningless ditty. It says everything about the first two months of our life with Lyra and hers with us.