They say it’s impossible to know how good your homeowner’s insurance really is until you file a claim.
The same can be said of your local hospital.
Until 2012, I had only a handful of experiences at Akron Children’s Hospital.
When he was in the second grade, Jules was tested and diagnosed with dyslexia at ACH. One of their orthopedists confirmed Hugo’s mild scoliosis and told him he had nothing to worry about. And ACH’s sports medicine department diagnosed Claude’s Osgood Schlatter disease, an inflammation of growth plates at the end of the tibia common in athletes who are growing rapidly.
Lyra, however, is an ACH frequent flyer. This month alone she has 11 appointments.
On her second day of life, we met for the one and only time with Dr. Catherine Ward-Melver, a kind geneticist who confirmed Lyra’s diagnosis of Down syndrome.
On her third day of life, we met Lyra’s ophthalmologist, Dr. Richard Hertle, whom we’ve seen multiple times a year ever since. He has operated on each of her eyes two times.
When she was 5 months old, Lyra was diagnosed with hypothyroidism, a condition common in people with DS. Certified nurse practitioner Stephanie Marszal in the endocrinology department is also someone we see regularly. Our visits with her are like double dipping, for Marszal worked in a pediatrician’s office before specializing in endocrinology. She provides both an update on Lyra’s thyroid and an extra wellness visit.
In the second half of her first year, Lyra began the infant block of therapies offered at ACH. Physical, speech and occupational therapies in back-to-back half-hour appointments make effective use of everyone’s time. Children from birth to 3 years old are eligible with a qualifying diagnosis.
Speech therapist Shelly Vaughn had Lyra singing Itsy-Bitsy Spider at our first visit, leaving me slack-jawed. Heather Reiss, her occupational therapist, got Lyra to work, work, work on both fine and gross motor skills all while Lyra thought she was playing. When she aged out of the infant block, I cried because I had grown so close to these ladies.
These days, Lyra has four speech therapy and two occupational therapy appointments per month. When we pull into the parking lot, Lyra chirps eagerly from her car seat, “Lisa, Miss Margaret!” Still, I sit in on enough sessions to know they make our girl work. Recently Margaret Norin, Lyra’s OT, told me, “I wish just once my clients with DS would say ‘Yes!’ the first time I ask them to do something!” Oh, yes, I could not agree more.
With Down syndrome comes a cascade of tests to rule out various issues. Annually we visit Dr. Diane Langkamp in the Down syndrome clinic to make sure we are on top of these things. (Down syndrome clinics are overwhelmingly located in the northeastern U.S. and I do not take for granted that we have one in Akron.)
Last year, an ACH otolaryngologist (ear, nose and throat doctor) ordered a sleep study for Lyra. Kids with DS have a higher rate of sleep apnea due to certain anatomical features. Any child not getting enough sleep has an increased risk of developmental delays, and children with DS need fewer, not more, developmental obstacles.
Most people with DS not only have low muscle tone, they frequently have ligament laxity. One common effect is foot pronation — ankles tilting toward one another while the toes splay outwards, fin-like — so Lyra has worn braces on her feet since she began walking.
But ligament laxity also affects the cervical spine. An injury to the atlantoaxial joint, or the first and second cervical vertebrae, can lead to paralysis or worse. So on July 20, Lyra had a spinal MRI under general anesthesia to examine the joint.
This past Thursday, Lyra also had an eye exam under anesthesia. Were she a more “compliant” patient, this would not be necessary. But Lyra fights like an oiled otter when getting examined up close and personal. Dr. Hertle needed to determine her first bifocal prescription and also test her for glaucoma. Because of her congenital cataracts and subsequent lensectomies, Lyra has a higher risk of glaucoma than the average bear.
Dr. Hertle. If I could put heart emojis in my column, they’d be here. When I learned my newborn needed eye surgery ASAP, I called a friend in a related field and asked who was the best in Ohio. Doctors hate talking about which practitioners are better, but as a friend of more than 30 years, this doc made some calls for me.
We’d be hard pressed to find a better pediatric ophthalmologist. Gentle and effective with Lyra (remember: oiled otter), when asked questions about the eye and his surgical techniques Dr. Hertle lights up like a boy getting his first puppy.
I learn other things from him too. When Lyra was 9 months old, she suddenly seemed to “awaken.” Dr. Hertle explained to me that the nerves in children with Down syndrome myelinate later than in typical kids: “See that wire down there,” he said pointing to an outlet with a thick cord plugged into it. “Because it’s insulated, electricity can travel faster. The same is true of nerves when myelination has occurred.”
I know of only two things lacking at ACH: One, the food could be better. Across the country, hospital restaurants serve food that is healthy, delicious and affordable. ACH has made some baby steps (two thumbs up for the cafe in the Kay Pavilion) but there is still ample room for improvement.
Also, all departments, including the ER and the surgery centers, should have more than popsicles and graham crackers (Goldfish, please).
The second deficit is big for us: No optometry. Because of her vision impairment, Lyra qualifies for a state insurance program called BCMH (Bureau for Children with Medical Handicaps). It helps with her visits to Dr. Hertle, but ideally we’d be able to use it for her glasses, too.
Lyra has no lenses, natural or artificial, in her eyes. Her glasses are essential and expensive. In order to use the BCMH insurance, however, our primary insurance must get billed first. The only optometrist’s office in the northern half of Ohio that takes both our primary insurance and Lyra’s BCMH is at Nationwide Children’s Hospital in Columbus.
But these concerns are no more than a couple of cirrostratus clouds in a bright blue sky. Not a week goes by that I don’t thank the universe that it takes me less than 15 minutes to get Lyra to some of the top medical professionals in the country.
Not only is it an immeasurable convenience for Summit County residents, ACH has no shortage of business, or so Lyra’s neurologist told me recently. Which means ACH provides great medical care where it is greatly needed.
I know parents of children with Down syndrome who have moved to different states for better medical care. That decision is one we will never have to make. If ACH were an insurance company, we’ve filed just about every possible claim. And since the results typically exceed our expectations, we know firsthand how good it really is.
This was first published in the Akron Beacon Journal on Sunday, July 29, 2018.
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.
Historically, I have not been a parent who has put much emphasis upon babyhood milestones. I was not concerned with the boys’ height and weigh percentiles. They held their heads up soon after birth, rolled over by three months, sat at around six months, crawled soon after mastering sitting, pulled up and cruised furniture by one year, walked at fifteen months. I never watched to see if they grabbed things by raking them into their hands or developed the pincer grip (thumb and forefinger). When I listened to them babble, I didn’t take note of what sounds they were making. Eventually, they all started talking—Hugo and Leif rather early (sentences at 18 months), Claude just before two years and Jules rather late (sentences at two and a half). The truth is, nothing about the way my four boys grew from infancy to babyhood to toddlers was remarkable.
All of that unremarkable development seems so luxurious now.
Getting Lyra Going
Lyra seems like any other baby. She sits up beautifully, reaches for toys, scooches 360 degrees in a seated position and backwards crawls. At nearly seventeen pounds, Lyra looks and behaves like any ten-month-old. But she is fifteen months old. Today, we have what we didn’t have a year ago, a span of time to see precisely what it means to have a developmentally delayed child. It is not that she can’t or won’t do certain things—she just acquires most skills at a slower pace.
We heard last summer at the NDSC’s convention that the purpose of therapies is not to hit milestones at the same time as most typical children—the purpose of therapies for children with Down syndrome is to teach them the best way to use their bodies. Because most babies with Ds have low muscle tone, or hypotonia, and laxity in their ligaments they often overcompensate with less than ideal habits, which can be hard to correct. For example, it is better to have a child with Ds slowly learn to walk with the proper foot strike on the ground than to have them walking earlier with pronated feet.
Lyra herself has a little compensatory trick she uses to go from sitting up to lying on her belly with minimal engagement of her core muscles: Sitting with her legs in front of her at 10 and 2 o’clock, she presses her face to the ground in between her legs and, finally, slides her legs out and back, like a swimmer’s arms doing the breast stroke. “Wow, is she flexible!” people have told me when they’ve seen her do this little gymnastic move. But this move does not train the muscles of her body to move the way she needs them to for later skills such as getting up to a seated position from her belly.
Imagine a tight spandex mini-skirt. Now imagine that a seam is sewn half way up the middle of the mini-skirt and you have Hip Helpers. Lyra wears them for an hour or so each day as she plays on her tumbling mat. With them on, Lyra cannot do the splits, and when she can’t do the splits, she engages inner thigh muscles, which is necessary for pulling up onto her hands and knees (the four-point position needed for crawling).
Lyra first popped up onto her hands and knees by herself four weeks ago, after months of working toward that goal. Every day she does it a little more and a little more. Once she gets her core strong enough, she will crawl on her hands and knees and as far as we are concerned, she can crawl for a good long while before walking. With my older kids, I was eager for them to walk because it meant I no longer had to worry about them crawling on dirty floors. However, crawling promotes kinesthetic brain development, helping the left and right sides of the brain to interact with one another—a fundamental requirement of later learning. Luckily, winter has set in here in Ohio and Lyra’s spends most of her floor time in our mildly clean house or that of her (far cleaner) daycare provider’s house.
Recently, we were invited to brunch at the home of friends we go far too long without seeing. Like our Leif, their son will be four in a few months and their daughter, whom Max had not yet met and I had not seen in six months, is eight months old. A baby ready to meet the world with eyes the size of shooter marbles, she seemed both relaxed and eager and didn’t hesitate when I took her from her mother’s arms. The first thing I noticed was how taut her core muscles felt under my hands as I held her. And then she reminded me that other babies grab on with their hands, like little monkeys who won’t fall off if you let go.
Lyra has a snuggly softness to her, even though she sits up ramrod straight, because her muscles are just never as taut as those of most typical babies. Though her hands are not flaccid noodles (as evidenced by the bruises she gave me a few weeks ago when pinching the underside of my upper arm while nursing) she does not grip onto me like a little monkey.
The two boys at Lyra’s daycare who were born the same summer as Lyra are now both walking. I remember when they first began rocking themselves on their hands and knees in preparation for crawling as Lyra does now. It was many months ago. Still, when seated together on the floor, the three babies play together as any group of one-year-olds will. Which is to say mostly parallel play with occasional toy snatching.
Hypotonia Is Everything
Low muscle tone. It is why Lyra does not hit the typical milestones. However, her muscles can be trained and they will get stronger. “The first two years with a Down syndrome baby are a lot of work,” Lyra’s current physical therapist told me and she’s right. As her parents, it is our job to make the work of Lyra’s muscles strategic, so she strengthens the right muscles and learns the best techniques for mobility, grasping, speech and feeding.
Twice a month, Lyra sees a team of therapists at Akron Children’s Hospital. The occupational therapist helps Lyra with her fine motor skills, things such as stacking rings on a stick, placing toys into a container (Lyra mastered getting toys out of containers long ago) and using that oh-so important pincer grip. The speech therapist helps us strengthen and organize Lyra’s mouth, using various tools and techniques, but Lyra is most happy when her speech therapist sings with her. On her last visit, Lyra said “down” repeatedly as her therapist sang “The Itsy-Bitsy Spider” while Lyra followed along, watching the therapist’s face. Lyra held the therapist’s hands, pulling them down with the rain that washed the spider out.
And, of course, Lyra receives physical therapy. We were able to see the ACH physical therapist before there was availability in what they call the “Infant Block” of all three back-to-back therapies. Since she first sat up on June 27, Lyra has made tremendous progress and I credit this progress to what we have learned in physical therapy. We’ve had to repeatedly change our goals for Lyra as she keeps meeting all that we set for her.
Another physical therapist comes to our home about every two months. The State of Ohio funds outreach programs for what they term “medically handicapped children” and with Down syndrome, Lyra qualifies. The benefit of home visits is that county physical therapist looks at the home setting, and can make unique recommendations. For example, last time she was here, she showed me that the tumbling mat that Lyra plays on is perfect, when folded in half, for Lyra to kneel next to with her knees on the ground and her arms on the mat (a variation of the four-point position).
Last year, Lyra worked for many weeks on rolling first from her belly to her back and then the reverse. Today she flips herself over and up whenever she wants, including the middle of a diaper change when it is entirely unhelpful and I have to remind myself of the time spent working with Lyra on her first major mobility acquistion. Eventually Lyra will master all the skills of mobility. And she will talk, feed herself, hold her pencils in a perfect pincer grip as she does her schoolwork. Someday conjuring the time once spent helping Lyra acquire the mastery of her body will be as abstract as remembering the work it took to successfully consolidate two full households into one, also a two-year gambit.
All of this intervention, of course, is only helpful if we incorporate it into as much of Lyra’s daily routine as reasonably makes sense. Most of the time I feel like we do a passable job, with some weeks better than others. Oh, sure, we bought a $150 speech kit at the NDSC convention last summer and other than taking out the honey bear cup (which facilitates drinking from a straw) the kit sat unopened and the two-hour video unwatched. For over four months. Recently, I took the kit along to Lyra’s speech therapy session. The speech therapist was delighted to explore the kit with us and showed me which items we should be using and how to use them. And then she asked if she could borrow the video. “Oh, please do!” I told her, thinking somebody should watch it (guilt bomb that it had become) and then maybe I could crib her viewing notes.
The goal of early interventions is not to speed up the achievement of developmental milestones; the goal is to learn the skills correctly, which is much easier to do than it is to unlearn incorrect patterns that a child has developed as compensatory techniques.
Great, got it. Check. And then we visit the doctors.
“Can she go from belly to sitting on her own yet?” No.
“Does she forward crawl on her hands and knees?” No.
“How about on her belly? Forward belly crawling?” No.
“Can she pick things up with a pincer grasp?” Maybe. Sometimes? I don’t know.
“Does she sing with you?” No. But she loves music!
“Is she cruising furniture?” Definitely not.
“Is she making p/b sounds?” I don’t know!
I know these questions, asked at well-baby pediatric visits and at the Down Syndrome Clinic, help assess Lyra’s skills in order to set goals, but as I answer the litanies, I shrink inside. We have to have goals, I understand. But the line between working towards goals and attempting to speed up the achievement of milestones can seem porous. Even Lyra’s pediatrician, Dr. M, who has a daughter with Ds, will highlight other children with Ds who have hit milestones at early ages, Someone did this, this and this and their child was walking by eighteen months. Well, what if Lyra isn’t? Is she a diminished child? Am I a derelict mother?
Age and Experience
Were Lyra my first child, maybe we would do everything for her that we now do and feel confident in our efforts. More likely, however, I think I’d be a basket case, never feeling like I was adequately working with my daughter and that her entire life’s happiness depended upon my ability to maximize early interventions. Questions about milestones from strangers and even friends might make me feel antagonized.
But Lyra is not my first child. I am older and have raised four reasonably well-adjusted boys. When I was a young mom, I learned something from my homeschooling friends that has served me well: Focus on outcomes. For example, in annual testing, Waldorf educated students don’t score at the same level as public school students, they generally score lower. But by the eighth grade, they generally score higher. Furthermore, Waldorf graduates often approach learning differently than their publicly schooled peers, having come up through a system that teaches the whole child, meaning not only their heads, but also their hearts and bodies, how to learn. The Waldorf pedagogy, which does not aim for testing outcomes grade by grade, seeks and often succeeds in cultivating an inquisitiveness that the students carry on to their subsequent endeavors.
This intense period of training Lyra and her body, strengthening her muscles, developing the correct skills will someday result in it all coming together. She will walk, talk, use utensils and much, much more. Whether this happens at 18 months, 24 months, 36 months, or even longer is not what is relevant. What is relevant is that she will, at her own pace, fully acquire all these skills and more. I know this because raising my boys trained me to trust my parenting instincts.
The Recurring Message
Funny thing, timing. As I worked to finish this essay, another mother of a child with Down syndrome shared this academic article from Britain, which compares responsive teaching to early intervention for children with Down syndrome. Looking at several studies conducted since the 1980s, researchers have found that babies with Down syndrome whose engaged mothers responded to the child’s initiated communication and activities scored higher on developmental testing than did the children whose engaged mothers generally tried to teach their babies something new (the poor babes with unengaged mothers, or ignorers, fared as badly as one would expect). Or put more simply, when the child directs the communication and activity, development is greater than when mom directs the communication and activity. Stop talk, talk, talking and start listen, listen, listening. Instead of “And now today we will learn this or that, little person,” observe your child’s interests and work from there.
Again, this dovetails the Waldorf pedagogy, which was thoroughly developed to meet children where they are with educational instruction. From the outside, a Waldorf education may look like not enough is being done soon enough to give a child the skills necessary to succeed. But as a bee cannot access the pollen of a closed bud, forcing open the blossom of a child’s mind is surely not a healthy path. Responsive communication, meeting children where they are, encourages engagement and, therefore, greater communication. Not surprisingly, this same article highlighting the greater level of success in responsive communication over a top-down early intervention approach in the developmentally disabled population points out that the same results were found in similar studies of typical children.
Our interventions with Lyra, and our the therapists who guide us, apply this approach. When Lyra babbles, we babble the same sounds back to her (she loves this), teaching her words as they naturally arise, such as “more?” and “please” when feeding her. We play with the toys she’s interested in and use them to encourage her movement. We fill small cups with her favorite snacks, which requires her to reach in and pick them up with her fingers rather than raking them up off of her highchair tray. And we do all of this occasionally, some days more than others.
What We See
Lyra pivoting in her high chair and leaning over the side with her attention riveted on Leif, seated next to her in his toddler chair, as he chatters away at the dinner table.
Lyra raising up her arms when we come close, letting us know she wants held.
Lyra taking her pajamas, diaper or whatever clothing she finds on the floor and moving them over her body as though she is trying to dress herself.
Lyra consistently and appropriately using the American Sign Language signs for “please,” “more,” and “hi.”
Lyra enthralled with every moment of back-to-back Kindermusik classes (hers and Leif’s).
Lyra at the window on the Polar Express waving and saying hi for ten minutes to all the people dressed as elves at the “North Pole” (a.k.a. Peninsula, Ohio).
We see a bright little girl who calls us dada and mama and who is engaged with her brothers, her daycare provider, playmates and anyone else she happens to meet. Regularly, I watch Lyra observing other people in a manner that I can only describe as keen. She takes things in. Will we notice cognitive delays when she is older? Probably. If so, we will support the development of her cognitive skills just as we have her physical development. Our goal is not to get her, or any of our children, a Mensa IQ. Our goal is to raise happy, engaged and productive humans who find value in the lives they lead and who approach the world with curiosity and compassion.
Author Richard Ford once said, “I’ve chosen a life smaller than my ‘talents’ because a smaller life made me happier.” This is not to advocate mediocrity per se, but a higher level of being that takes into account multiple aspects of existence beyond external assessments of accomplishment.
We can only know ourselves through our interactions with others. The proverbial wise man on the mountain may have to confront his hunger, the elements, and certainly boredom. But he will not truly know himself until he is among other people, comparing himself to them and observing his own responses. We compare Lyra to other children from time to time, it’s inevitable. And it helps, me at least, keep a perspective on Lyra’s journey.
Other people compare Lyra too, giving us an added layer of interaction with the rest of humanity. We know this because no matter everywhere we go, people go out of their way to tell us how beautiful she is. They come out from behind counters at shops and gas stations, waitresses who are not tending our table make their way over in restaurants, strangers stop me on the street. This may sound harsh, but I really don’t think Lyra is beautiful, at least not in the conventional sense. Her eyes are small and prominent in her face are the characteristic features of Ds. Each time these unsolicited compliments are paid to Lyra’s beauty (always the adjective beautiful, none other, though if they talk a long while they inevitably also call her adorable), I want to ask if in so saying do they mean I see she has Down syndrome? And are giving some type of encouragement? I don’t know because I’ve never asked. I suppose their intention, regardless of the inspiration, is kindness.
I hope they will feel the same way when Lyra is an adult.
The majority of the Down syndrome blogs are written by families whose child diagnosed with Ds is under the age of three. In an online group I belong to, mothers openly wonder why this is the case and what happens to families who have older children with Ds?
I’m pretty sure I know. People move on in life and after three years, having a child with Down syndrome is no longer a novelty. The news of an extra chromosome in a new baby has been digested, how T-21 manifests in an individual child (particularly in terms of any serious medical issues) has been observed and, finally, the remediation for baby’s particular needs has been identified and (ideally) implemented. Baby’s Ds has normalized within his or her family. And just as families do with every baby, whether a child is born with a diagnosis or not, the family resumes dealing with the normal complexities of life.
I’ve seen similar situations many times over. Homebirthers have a hard time detaching from the midwives who’ve just helped them have amazing births. Many of these new moms consider becoming midwives, but only a few do. I’ve known women who, having worked through breastfeeding challenges with their own babies, go on to become La Leche League leaders. But few continue in leadership roles long after their last child weans. When children become school age, some mothers become ardent advocates for particular types of education or homeschooling. But by the time the kids are in middle school, or certainly high school, parents often relax on education. Many homeschoolers start attending school, and children who are privately educated through elementary and middle school frequently attend public high schools. Intensely held positions melt away as the needs of children change. And, too, children find their own paths and must strike out with lessening assistance from their parents. Life, forever transitory, goes on.
Why I Write
I write because I am a writer. When prevented from writing for any length of time, I have a hard time sleeping because essays clutter my thoughts. When I was pregnant with Lyra, and had no idea the baby I was carrying had three 21st chromosomes, I began writing about my family. Oh, I’ve written about us before, an entire book, in fact. But this time, I began work on a series of essays and had several outlines in mind.
I also process life by writing, which is especially helpful with the harder stuff. My ex-husband, who throughout our marriage had tried to convince me that I was a chronic depressive and should, therefore, be unendingly grateful to have him in my life, told me some months after I left him how he envied my ability to figure things out by writing. Shortly thereafter, he stole my journal off of my computer and presented it to the divorce court as evidence that I was not mentally stable enough to have custody of our children. Leaving that marriage was scary business and, for the first year, I frequently questioned myself. I don’t know if the magistrate handling our divorce ever read my journal, but nothing came of it. Except further validating my decision to divorce.
Yes, writing essays about family became a different project than I had first envisioned because Lyra is a different child than we had anticipated. I write about our experience as we unpack our new lives, which now includes a daughter with Down syndrome and congenital cataracts.
Not Just a Down Syndrome Blog
As I routinely point out, and hopefully demonstrate, Whoopsie Piggle is a collection of essays about my family, of which Lyra, a child with Down syndrome, is one of five siblings. Certainly she is something of the star of the family, but in my experience, the babies in most families are the stars. If Lyra had merely 46 chromosomes would I know now what I do about Ds? No way. This first year with Lyra was like finding myself in a graduate program on Trisomy-21 and all the related medical, social and cultural issues. Writing what we have learned about our daughter, as well as Ds in general, again helps me process my life as it has now been redefined by my fifth child. And by being publicly available, perhaps it might help another mother, and her family, who discovers the baby she is carrying or just birthed has Down syndrome.
However, I have many essays living rent-free in my head like squatters that have little, if anything, to do with Lyra and her 47th chromosome. In the past year, I have written through our learning curve on Down syndrome, along with the medical challenges Lyra has faced. Now, a year after her birth, our family is a boat once again sure of its ballast. Which was also the case when my four older children had their first birthdays.
But before evicting those squatter essays onto the pages of Whoopsie Piggle, it seems appropriate to give Lyra a full blast of the spotlight.
Lyra’s Eyes—More Concerning than Down Syndrome
When I first held Lyra, I immediately noticed her eyes were “Downsy-shaped.” Shortly thereafter, I saw the ghostly pallor of her pupils. At an ophthalmologist’s office three days after her birth, we learned that Lyra had bilateral, congenital cataracts. We were referred to a second, pediatric, ophthalmologist, whom we saw that same day. He immediately scheduled surgical lensectomies for both of Lyra’s eyes.
Hanging around a pediatric ophthalmologist’s office as much as I have in the past year, where the waiting room is often filled with babies born with cataracts, one might easily assume congenital cataracts are common. They are not. Congenital cataracts occur in the United States (and the U.K.) in 3 to 4 out of 10,000 live births. That’s less than .4%, making it pretty rare. Though not considered a marker of Down syndrome, of the infants born with cataracts, the majority of them also have Down syndrome. But even within the Ds population, congenital cataracts are rare, effecting approximately 3% of babies born with Ds in the U.S.
Statistics Versus Reality or When the Number Is Yours
We feel very lucky—providentially, miraculously lucky—that Lyra was spared any of the heart defects commonly found in infants born with Down syndrome. However, for the first two months of her life, all Max and I could focus on were Lyra’s cataracts. Not her Down syndrome and the challenges it might present, but her blind eyes. Her cloudy lenses barred all images; only bright light gained access to her retinas. When she was a few weeks old, Lyra’s eyes started wandering waywardly in their sockets, never in tandem. Bereft of any visual input, the parts of Lyra’s brain that process vision remained unused. Left that way, those parts of her brain would have become effectively obsolete.
Lyra was six and seven weeks old when she had her lensectomies, first on her right eye, and then on her left. More than anything, I was anxious about Lyra having general anesthesia. At eight pounds, she was barely bigger than a bag of sugar. I did not cry when my midwife told me Lyra appeared to have Down syndrome, nor did I cry when genetic testing confirmed the diagnosis. But when a nurse took my six-week-old infant from my arms and walked her down a hallway to the surgical suite, Max and I stood watching until the doors closed. And then I turned into Max’s arms and wept, my sternum burning like I’d just run up a long hill. Please don’t let her die.
Five hours later, we were home where Lyra quickly recuperated. Because everything went so smoothly, the second surgery, exactly a week later, was not nearly as emotional. Soon after her lensectomies, Lyra began wearing specialized contact lenses and, as I described in “Lyra’s Eyes” so too began the bimonthly torture events otherwise known as lens changing appointments. Still too young to understand that contact lenses give her vision and should therefore be tolerated, if not welcomed, Lyra has only improved her fighting techniques. I walk into the exam room with a baby who momentarily transforms into an eel—slick with sweat and strong enough to twist in all directions. Lyra also uses the small openings of her eyes, a Ds marker, as one of her tactics. She shuts them so hard in these appointments that her upper lid sometimes turns inside out. An optical speculum is absolutely required. As are three people.
After a year of successful contact wearing, I noticed one day in August that the contact in Lyra’s right eye was missing. We were in the Green Mountains of Vermont (read: far away from specialized pediatric ophthalmologists), where we’d just arrived for a two week vacation. Lyra’s right eye is the one with an elongated pupil, part of her iris having been nicked off during the lensectomy. Without the familiar bubble of an aphakic contact lens, Lyra’s pupil looked different, prettier even, or maybe just more normal, to me. I felt like I was seeing her sighted eye for the first time. With her lenses in, I am reminded of the band director I had my sophomore year of high school who wore glasses with a very strong bifocal correction. His eyes looked odd due to the magnification. When he took off his glasses, usually to rub his temples after trying to teach us a new piece of classical music, he looked normal.
“You know she won’t have to wear these lenses much longer,” said Lyra’s ophthalmologist when we returned home and I told him about the appearance of her lens-less eye. “When her eye is big enough, we can get her into a different lens without that big silicon bubble, I might even be able to fit her in them in the next few months. We’ll see.”
A few days after her missing lens was replaced, Lyra removed the lenses from both her eyes. Astronomically expensive ($500+/pair), we searched but only found one. As a result we have:
Figured out how she takes them out. She puts her third finger in her mouth and her forefinger at the outer corner of her eye and pushes. We now remove her hand from her face whenever we see her doing this.
Purchased, as back up, glasses with the tiniest frames and the thickest lenses.
Been told by her eye surgeon that the new lenses without the thick silicon bubble are also smaller in diameter and, as a result, will suction more securely onto her eyeballs. He has ordered her first pair.
Seeing Clear and Straight
After her lensectomies and with her aphakic contact lenses, Lyra became a sighted child and her brain has developed as such. She looks towards sounds she hears or at people, animals and toys she wants. Soon after the lensectomies, Lyra’s right eye dominated her left, although both eyes regularly crossed inwardly, towards her nose. We patched the right eye for months, with little impact other than to irritate the skin around her eye.
The medical term for crossed eyes is strabismus and is based on the Greek word for “squint.” I learned this after I described to the surgeon how Lyra sometimes squeezes one eye shut while scrunching up the same side of her face. Many people who see her do this make Popeye references and more than a few have quoted the comic sailor man. I’m afraid we all laugh. Poor kid.
“We aren’t sure why kids with strabismus squint, but the best guess is that it helps them to focus,” Lyra’s eye surgeon told me in June. “I think we’ve done all we can with the patching. I’d like to schedule surgery to correct both of them.”
“Will this improve her vision, I mean, won’t that give her depth perception?” I’d heard from physical therapists that following surgeries for crossed eyes, kids often had big leaps in motor skills and coordination. I assumed this was due depth perception, which doesn’t develop when the eyes do not track in tandem.
“Yeah, well, she’ll have about a 25% chance of developing depth perception,” he said.
“Twenty-five percent? That’s pretty low!”
“I know. It’s only 50% in typical kids, no matter how young we operate. Sometimes it develops and sometimes it doesn’t but it’s half as likely with the Down syndrome. Still, you are going to see a big improvement in her vision. She’ll have a larger field of vision and things will make more sense to her.”
Eye Surgeries 3 & 4
The morning after her first birthday, both of Lyra’s eyes underwent muscle surgery to correct them from crossing. Knowing the operations were much less complicated than her lensectomies had been, I felt relaxed as we checked in at the hospital, visited amiably with the staff, Lyra’s surgeon and the anesthesiologist. But when the surgical nurse came to take Lyra from my arms, my throat felt strangled and once again Max and I held each other while watching a stranger walk down the hallway to the surgery suite with our now fifteen pound baby. Three bags of sugar and general anesthesia.
In the recovery room, I sucked my breath in when Lyra opened her eyes. With last year’s lensectomies, we couldn’t see the incisions because they were made on the backside of her eyes. But with the strabismus surgeries, red valleys rippled the once smooth, white surfaces between her nose and irises. The incisions looked like they had been made with a bread knife as the edges were not straight lines, but like the bric-a-brac trim stitched to the edge of Raggedy Ann’s apron.
For more than a week, Lyra’s eyes remained a gruesome sight, however, her vision improved immediately. A month later, Lyra does many things she didn’t do before, which we attribute to better vision. She suddenly developed “separation anxiety” and is no longer content being held by others when her father or I are nearby. She leans in our direction, looks at us and fusses while reaching for us with her arms. When playing on the floor, Lyra now raises her arms for me to pick her up whenever I am close to her. But she also sits for long periods of time playing with toys that are placed within her reach. She reaches farther ever day. And pivots more. Under the tutelage of physical therapists, we are teaching Lyra to go from sitting to lying down and vice versa. Crawling is coming.
When I have my contact lenses in, I can see very well. But if I cross one of my eyes (I can cross each of my eyes independently, impressing even Lyra’s ophthalmologist), where I should see one image I see two overlapping images. It’s terribly confusing, for which is the real item and which is the phantom double? Depth perception or not, seeing straight is certainly an improvement over seeing double.
The other thing, which may sound somewhat inappropriate, is Lyra looks better—the aspect of her face is surprisingly different with her eyes working in tandem. Is that because it is more normal? Perhaps. Do I love her any differently? Of course not.
What, More? More Lyra! At Least a Wee Bit More…
Before her hypothyroidism diagnosis, Lyra’s extremely slow growth rate was very concerning. She gained just two pounds in her first three months of life. So when Lyra had a growth spurt shortly after she began taking Synthroid, everyone was relieved and felt the problem was solved. However, at her 12-month well-baby visit, Lyra weighed 15 pounds even, only one pound more than she had three months earlier. Were she a typical baby, she’d have weighed almost 23 pounds by her first birthday as most babies grow two and a half times their weight in the first year and Lyra was seven pounds, ten ounces at birth.
“She’s slowing down again,” said Lyra’s pediatrician, Dr. M. “Her head measurement is really good, 75 percentile in the Down’s chart, but her height and weight have gone down in percentile since her 9-month visit.”
We talked about it. Lyra is still exclusively breastfed. Like many breastfed babies, my older boys all grew rapidly until they were about six months old. After that, they stopped putting on weight. Still, they also continued to grow in length, like pulled taffy I used to say. Lyra is not. In the end, Dr. M and I decided, well, nothing. As her brain size is not a concern, for now we’ll just keep monitoring the rest of Lyra’s growth.
Poop, Poop, Poop or The Miracle of Fruit-Eze™
WordPress lays an array of statistics in front of my eyes each day. Not only how many views I’ve had, but also the countries where Whoopsie Piggle has been read (over 40 so far, in all continents except Antarctica), and even the search terms used to find the site. Poop, it turns out, is pretty popular. Or, rather, searching for solutions to infant constipation is. Hundreds of hits on WP have been related to this issue.
At the National Down Syndrome Congress convention last July, Max and I attended a session led by the director of the Boston Children’s Hospital Down Syndrome Program on healthcare guidelines for children under the age of five. Constipation merited its own slide in her PowerPoint presentation, as it is such a common problem in the Down syndrome population where even at the cellular level, excretion is not as efficient as it is in the typical population. I once believed the underlying culprit for Lyra’s pernicious constipation was her hypothyroidism. But in a discussion with a scientist at the convention who was studying autoimmune disorders, I was told that even before she began pharmaceutical therapy, Lyra’s thyroid levels would not have caused her constipation. It seems the cause of Lyra’s constipation is simply her Down syndrome.
Given its pervasiveness, I’m surprised that more information is not readily available on how to address constipation without using laxatives. Many people with Down syndrome regularly take a product called Miralax, but it’s not considered safe for long-term use, something the Boston doctor mentioned in her talk. She then went on to tout the benefits of a diet high in fiber and an all-natural product called Fruit-Eze.(Yes, that’s purple and a link. If I could make lights blink around the name like an old-fashioned movie marquis, I would do that, too, I’m just so thrilled with this product.)
As far as I am concerned, that one tip merited all the exhausting travel and expense of attending last summer’s conference in Denver for I am here to sing the testimonial praises of Fruit-Eze. It is nothing more than a sweet jam of prunes, dates and raisins mixed with prune juice. Spread it on toast, mix it in baby food, eat it by the spoonful! Within days of giving Lyra two small spoonfuls in her food, one in the morning and one in the evening, we have been delightfully surprised to find stools in her diaper, sometimes twice daily! And no longer does she announcing their arrival with plaintive cries of pain because the poo is soft.
At $26 + shipping for a 32 ounce jar, Fruit-Eze is pricey, but well worth every penny. It is not at all hyperbole to say that Fruit-Eze has changed our lives.
The New Normal
A family of five children, the oldest is nineteen and the youngest is one. The oldest is off in his second year of college at the University of Michigan, living in a co-op where he cooks dinner once a week for 52 people and is learning how easy it is to cut the fingers of your left hand when chopping so many vegetables while back at home, the youngest complains as she cuts five teeth at once.
The second oldest continues to find romance as the primary inspiration for his song writing, which he practices All The Time on the sexy new guitar he purchased with the money he made over the summer at Old Carolina Barbeque, while his sister sits on the carpet next to him, mesmerized by all music, but especially the songs of her brother.
The third boy, so long the youngest, officially now the middle child, acts like a firstborn around his younger siblings, caring for them like a mini-me, his sister often found in his arms and most nights while I get dinner on, he feeds her, this boy who, like all mine do at 13, now grows as fast as corn on the white summer nights in Alaska, the fleeting traces of boyhood dissolving as he becomes lantern-jawed and long limbed like his older brothers and, just as they did at 13, this boy has stood up to his father and found, as did they, that there is no room in that relationship for any voices except one and now he must process why his father has abandoned him, too, when all he wanted was to be seen and heard, just like anyone else and it is all so much for a young man/boy but he is resilient, with brothers who guide him down the path they each traveled not long ago.
The last boy is also off to school, going all five days to the Waldorf school and he tells us he loves his sister, he loves her, he loves her and he can’t stop taking her ears in his hands and squeezing them even though we’ve told him so many times to Never Touch Her Ears and even though doing so means his sister can reach his long hair and pull it, which she always does because she loves pulling hair, especially her brother’s hair because he screams when she does and she has him right there in her lap, he doesn’t move lest she pull harder but he screams until someone extricates her fingers from his flaxen locks, which his dada refuses to cut because it is like a golden halo that floats around his face as he runs, runs, runs in the park-like yard, taking his pants down to pee in the grass, throwing dirt in the fish pond, digging in the sandbox, spraying everyone who comes close with the hose and when he falls asleep his muscles lose all tension and his head sweats just like the music brother’s head did when he was a boy, the music brother who announced when the littlest brother was still in the womb that “he will be like me and I shall raise him in my own image and I will call him Leif” and it was so.
Just a Child
I have a friend whose mother is from Japan. My friend once told me she did not hear her mother’s accent, which I thought was quite pronounced. Oh, she knew her mother had an accent. But in daily life, her mother is her mother, not her Japanese mother, whose voice she has listened to since the nautical days of earliest life.
We are always aware that Lyra has Down syndrome. We see it in her eyes and the manner in which she develops. But Lyra is no more our Down syndrome daughter than my friend’s mother is her Japanese mother; she is simply our daughter. Our fifth child. Her brothers’ sister. Who happens to live in the rich milieu that is this family, that is Whoopsie Piggle.
Your daughter was born with Down syndrome. Do not expect her to read, write, do math or ever drive a car.
A physician said these words to the parents of a buoyant baby girl, aptly named Grace, in the days after her birth at UC Davis Medical Center. It sounds like something a doctor might have said in the 1960s. But in fact those words were spoken in August of 2012, the same month that our daughter, Lyra, was born. The parents who were told this spent the first months of their daughter’s life in a gloomy fog, bereft because of what they were told not to expect.
Too many physicians, people whose job it is to know the latest research and trends, do not understand the realities of a Down syndrome diagnosis but instead cling to limiting portrayals. Why is that? That falsehoods regarding a diagnosis of DS are tenaciously held and promulgated by anyone, but especially health care professionals, needles me as I try to understand why. The only explanation I’ve come up with is that it is still acceptable to discriminate against this specific population.
Driving to Denver: Our First National Down Syndrome Congress Convention
While always a resource for information, support and research, the primary function of the non-profit NDSC is holding the annual convention. For two and a half days, sessions are held addressing they myriad challenges families of people with Down syndrome face, as well as sessions for people with DS themselves, at different ages and developmental stages. Many families come every year and one such veteran of the convention, a mother from Arkansas, recommended we stick to the sessions that relate to our child’s age.
Max and I, both incurable students, were eager to attend but the roughly 1400-mile drive might have been a deal breaker if the destination were not Denver. The fact that Max’s sisters and their families live just outside of Denver sealed the deal. And so, taking ten-month-old Lyra, 3-year-old Leif and and thirteen-year-old Jules, who helped navigate and keep the babies happy, I drove to Denver. Max flew out two days after we left, yet arrived six hours before we did.
The first session we attended was on speech development. Even though it was four and a half hours long, it was heavily attended. Primarily an overview of the benefits of early and ongoing speech therapy for children with a diagnosis of DS, for me the highlight of the presentation was a short video. In it, five young women with Down syndrome were interviewed. Sitting at a table together, they discussed their training—two women were certified pre-school childcare assistants, having taken 90 hours of training at their local community college—and their careers. They talked about boyfriends and parties. Easily understandable, their language was rich and their conversational styles flowed naturally and comfortably.
At a break, I began talking with the families around me. They, like me, want their children to speak clearly and fluidly. “People judge intelligence by speech, it’s not fair, but they do,” said one father, distilling one of my greatest fears about my daughter’s Down syndrome in one short sentence. The truth of his statement was like a figurine on a revolving dais spinning slowly in the middle of our conversation. That some people with DS have difficulty speaking may not be reflective of their cognitive abilities, but rather due to physical challenges including hypotonic mouth muscles and the forward placement of the tongue. This fact is not widely understood by the general population. Instead, those who speak unclearly, or not at all, are deemed ignorant and too often are dismissed as valid members of society.
In our society, general intelligence is primarily understood by the strength of someone’s linguistic intelligence and logical-mathematical intelligence. College entrance exams exclusively test these two modalities, which also happen to be the two most challenging modalities of intelligence for people with a diagnosis of Down syndrome.
On the other hand, it has been repeatedly shown that many people with DS are hyper-social and hyper-sensitive, that is, they have strong interpersonal intelligence. And many folks in the DS community joke that the 21st chromosome is the “music” chromosome as singing, dancing and listening to music are passions of a significant number of people with DS. Our own girl loves her music-man brother, Hugo. When she is fussy, Hugo often takes her to the living room and plays the guitar or piano while singing, just for her. She instantly quiets and remains content for as long as he makes music. She does not, however, fall asleep while her personal minstrel plays for her.
Nobody Walks in L.A.
When we weren’t in sessions, Max and I walked around the exhibit hall pushing Lyra in her stroller. There were things to buy like eyeglasses and clothing specifically designed to fit people with DS. We purchased a speech therapy kit for Lyra that includes several straws, to be introduced at graduating levels because, unlike a bottle or sippy cup, when drinking from a straw, the tongue naturally moves to the back of the mouth. I spoke at length with a remarkable young couple, Tim and Liz Plachta, who have created a post-secondary scholarship fund for people with Down syndrome. Ruby’s Rainbow is named for their young daughter who has a diagnosis of DS.
At a table for Adam’s Camp, a program in the Rocky Mountains where five therapists work with five kids for five days to get a boost in therapy goals, we met a father whose child with DS was ten years old. No longer in shock and overwhelmed, like so many of the parents there with babies, this dad was relaxed. As he chatted with us, his three children crowded around Lyra’s stroller, making her smile and clap. He told me he and his wife plan their yearly vacations around two things: a week at Adam’s Camp for their son with Down syndrome (while his siblings are at the typical camp on the same YMCA campus) and the NDSC convention.
“You know, we came the first time to the convention when our boy was just a baby, just like your little girl there, and the keynote speaker was this woman from LA. She was an actress with Down syndrome and I recognized her from TV shows she’d been on. She also worked in an office and drove there in her convertible BMW. In L.A. That changed everything for us, like how we think about our son and his life. So we’ve been back every year since then.”
Unlike the actress with Down syndrome, I’m not so sure I can drive in L.A., where the traffic is notoriously congested and the drivers are, even more notoriously, aggressive.
The Goal of Therapies
Shortly after Lyra was born, our local support group gave us a copy of the book, Gross Motor Skills in Children with Down Syndrome by Patricia Winders. Ms. Winders was at the convention and presented one session for pre-walkers and another for children who are already walking. Max and I both went to the session on pre-walkers and I am glad we did. After breaking down the early stages of gross motor skills into five stages, she asked for baby volunteers and chose Lyra to demonstrate Stage 3. While she sits up quite solidly now, Lyra does not put her arms out to catch herself if she tips over and, as a result, we cannot leave her alone sitting up unless she is on a padded surface. Ms. Winders had Lyra doing any number of seemingly impossible tasks in no time flat.
That was thrilling, but what stuck with me the most from that session was the feet of another child. They haunt me. With their lax ligaments, children with Down syndrome can easily develop pronated feet if they do not receive early interventions. Stage 4 was demonstrated by a two-year-old girl, who has been “cruising” furniture for a few months but was not yet walking independently. This small child’s ankles bulged over her instep while her toes splayed sideways looking almost like fins.
“Has anyone recommended she use Sure Step braces?” asked Ms. Winders.
“I took her to the orthopedic surgeon,” said the girl’s mother, “and he just said, ‘She has Down syndrome; she’ll walk funny,’ and he didn’t want to do surgery.” It doesn’t take a doctor to see that the girl’s feet would eventually cause her pain from the completely avoidable malformation that was occurring. This mother was not derelict; she had taken her child to a specialist. The doctor’s attitude is reprehensible, if not malpractice.
Patrica Winders rolled her eyes and told the mom to get her daughter in Sure Step braces, not something like Sure Steps, but precisely that brand. And she stated to the entire audience the same point that the speech therapists we’d listened to had told us in other sessions:
The goal of early interventions is not to speed up the achievement of developmental milestones; the goal is to learn the skills correctly, which is much easier to do than it is to unlearn incorrect patterns that a child has developed as compensatory techniques.
Breaking News and Controversy: To Have DS or Not? That Is the Question.
In the middle of the convention, I received a text message from my friend Mariko, whom I have known since high school. Mariko’s text had a link to this Boston Globe article in which researchers have been able to “turn off” the extra 21st chromosome in cells taken from a man with Down syndrome. The application of this research is a long way from being determined.
To be able to end or remediate the medical complications and the cognitive limitations many people with Down syndrome face may seem to many, at first blush, a no-brainer. But I felt stopped in my tracks. The NDSC mantra is “More Alike than Different” and their work in educating society and supporting families encourages an attitude of integrating, not marginalizing, people with Down syndrome. There are many slogans on things from T-shirts, to Facebook groups (including one I belong to), and the aforementioned non-profit, Ruby’s Rainbow, that refer to Down syndrome as “rocking the 21st chromosome.” So what does it mean if somewhere down the road the medical technology exists to eliminate the effects of that very chromosome?
In the days since I first heard of this new research, voices have piped up to state that this would be akin to cultural genocide, including this Canadian woman whose daughter has DS:
We’ve got a genetically similar community, visible minority who are being targeted and terminated globally. People think, Well, this is the way it is and these people just shouldn’t be.
This news initiated one of the most achingly honest conversations I have read on a social media Down syndrome support group. Generally, the comments on that group are full of cheers for each others’ children as they master some milestone or another. And just as often, words of comfort are given, and prayers offered, when families post about set backs or serious medical interventions, such as open-heart surgery. The idea of “turning off” the extra 21st chromosome strikes this chord with so many families: It is offensive that people do not accept our children the way that they are, but it is also true that our children struggle greatly not only with health issues but also learning their basic gross and fine motor skills, speech and hosts of other things that we in the “typical community” take for granted. People with Down syndrome may be more alike than different from people without an extra 21st chromosome, but their successes often come due to intensive interventions and plain old work. Hard work.
And after all that work, even if a child with Down syndrome grows into the most independent, successful adult, what awaits is a cruel sentence. Alzheimer’s is not a matter of if, but when. All adults with Down syndrome begin manifesting the physical pathology of Alzheimer’s in their forties. 80% will go on to develop dementia. And, yes, there was a session at the NDSC convention on this subject.
Again, what we don’t know is what this latest research will bring to bear on the lives of today’s children with a diagnosis of Down syndrome. Research on Down syndrome, and the attendant complications, is being conducted worldwide. At the NDSC convention, Lyra gave saliva samples to a scientist studying autoimmune disorders in Down syndrome (Lyra’s hypothyroidism is considered an autoimmune disorder) at the Linda Crnic Institute for Down Syndrome.
What Does it Mean to Have Down Syndrome?
If someday there is a medical way to “turn off” the extra 21st chromosome, I suspect that the Down syndrome community will treat it similarly to the way the Deaf community has responded to cochlear implants as described in this article:
The conflict concerning cochlear implants is centered on the definition of disability. If deafness is defined as a disability, as it is from the medical view, it is something to be altered and repaired. On the other hand, if deafness is defined as a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today’s society, should be readily accepted and supported. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.
I don’t know what we, or Lyra herself, would one day choose to do. Of course I would want to spare my child the suffering of early onset Alzheimer’s, but everything about my daughter’s diagnosis of Down syndrome has caused me to rethink so much of what I once assumed.
The bigger question is whether having Down syndrome is such a bad thing. Yes, all the medical and health issues suck, suck, suck. If I could wave a wand and take away all the attendant medical issues that come with Down syndrome, I would. Without hesitation.
But consider this: People with Down syndrome are vastly happier than people without Down syndrome. Physician and researcher Brian Skotko published the following findings:
99 percent of adults with Down syndrome reported feeling happy with their lives
Another 97 percent said they liked who they were and
96 percent liked the way they looked
97 percent of siblings ages 12 and older expressed feelings of pride about their brother or sister with Down syndrome and
88 percent were convinced they were better people because of their sibling with Down syndrome
The Cost of Ignorance: Justice for Ethan Sayer
In Maryland last January, a young man with Down syndrome tried to watch Zero Dark Thirty for a second time in a movie theater before buying a second ticket (his family believes, based upon his phone record, that he was trying to do so with his cell phone). Three sheriff’s deputies, who were working mall security, brutally apprehended Ethan Saylor for this offense. Mr. Saylor’s caregiver was present and told the officers not to touch her client because it would escalate things. She was right. It did.
Instead of treating him like they would any other adult human, intead of listening to the simple advice of his care giver, instead of using training they claimed to have received for dealing with people with developmental disabilities, the sheriff’s deputies assaulted Ethan Saylor. And instead of watching Zero Dark Thirty at the time it was scheduled, the other audience members witnessed the beginnings of a murder. After being dragged out of their view, audience members report hearing Mr. Saylor cry, “I want my mommy!” as he was shoved to the floor, handcuffed and, according to the medical examiner who conducted his autopsy, asphyxiated. His death was ruled a homicide
In January of 2013, in the United States, a man with Down syndrome was murdered by the authorities. For a movie ticket? No, for being different.
In the community of families that include someone with a diagnosis of Down syndrome, we are all Ethan Saylor’s family. His murder is the worst fear of a parent with a child who has DS. I believe Ethan would not have been murdered had he been a man without Down syndrome.
I met Ethan’s mother and sister at the NDSC convention. Hardly their first time at the convention, they’ve been regular attendees since Ethan was Lyra’s age. They had a table set up with buttons. I took several. They had photos of Ethan from the time he was a baby, with tufty blonde hair, to his high school graduation. And they had displayed his collection of police and military paraphernalia—badges, patches, hats. Ethan, I learned from his sister, was a big fan of the police and military. One of their biggest.
I talked with his sister, a pretty woman in her twenties with blonde hair framing her face in soft ringlets and blue eyes that held my gaze while we spoke. She told me that the moms of kids with Down syndrome who have been keeping up the pressure, particularly in the blogosphere, have sustained Ethan’s family as they seek justice. It hasn’t come easily. The Sheriff’s department investigated its own officers and found no need to press charges. After the release of the Sheriff’s report, witnesses to the murder have contacted the family to tell them the report was inaccurate.
The Washington Post reported last week that, “with good reason, the Justice Department is now investigating the incident as a civil rights case.”
The NDSC Takeaway
Max and I learned so much at the National Down Syndrome Congress convention about how we can help our daughter realize her full potential. We found information, support, community and tools to help us be the parents she needs us to be.
But all we learned was not bright. We learned how far our society is from treating as fully human those who have a diagnosis of Down syndrome. From baby Grace, born in a modern hospital affiliated with a major university, whose life doctors summarily dismissed her life as having any potential, to Ethan Saylor, dying at the hands of the officers sworn to protect him as a citizen.
Next year’s NDSC convention will be in nearby Indianapolis in early July. If you’ve ever been interested in attending, I strongly encourage you to do so. You’ll find us there.
“What’s the word you just used?” I asked Lyra’s ophthalmologist.
“Myelinate. It’s a coating over the nerves, just like that wire down there,” he said pointing to the floor where a thick cable traveled a short distance from the exam chair I was sitting in, holding Lyra in my lap, to the wall where it was plugged into an outlet. “Because those wires are insulated, currents travel faster than if they were not. Our nerves are the same and children with Down syndrome tend to myelinate a little later than other kids.”
Like her pediatrician, Lyra’s eye surgeon is incredibly smart. He observably delights in answering questions and, if we are discussing eyes and not nerves, he often dashes over to a poster on the wall that illustrates the anatomy of the human eye. At her last visit, I shared with him how she had changed since beginning treatment for hypothyroidism in early April. It’s not that she seems more intelligent, but rather she’s more alert and awake. A leader in a Ds support group told me that “our babies” tend to wake up at around nine months, but she was not sure why. Learning why from the ophthalmologist reminds me that I cannot rely on any one source—be it a book, website, support group or even a doctor who specializes in Ds—to fully inform me. I need to continually synthesize all the resources available to us, the parents of a child with Ds.
And I see the beginning of a lifelong pattern of questioning whether or not something is the direct result of Lyra’s Ds. Earlier, I had asked if she refused a bottle because of the hypotonia attendant to Ds. Because she is a champ at breastfeeding, which requires more muscle strength than drinking from a bottle, I believe Lyra’s rejection of bottles is purely personality and not due to any Ds related hypotonia. Now, we’ve learned, her new vivaciousness is attributable to her Ds and not her pharmacological treatment for her thyroid issues.
Because they are generally smaller than typical children, doctors use a growth chart specifically designed for children with Ds. At an appointment in late March, just a week before she began taking Synthroid for her hypothyroidism, Lyra was 24 inches tall, which put her in the 20th percentile for children with Ds. After two months on Synthroid, she was 26 inches tall, putting her in the 50th percentile for kids with Ds. She has gained nearly two pounds and now weighs a little more than 14 pounds. That keeps her where she was at in March, in the 30th percentile for weight, but, again, that may not be caused by anything atypical. Though she eats food, Lyra is exclusively breastfed and after six months of age, breastfed babies tend to gain weight more slowly than formula fed babies. This was true with all of my boys whom I used to joke about being on some virtual taffy-pulling machine—they’d grow taller and taller and taller without any commensurate weight gain. At nineteen Claude is still a lean drink of water, weighing in at 160 pounds on his 6’2” frame.
For several months, Lyra wore clothes sized for the average three-month-old. She grew, but so incrementally as to be stalled out at size three months. Most babies triple in weight their first year and darling outfits easily become hand-me-downs after only one or two wearings, size three months being a brief weigh station on a quick journey to size twelve months. Or so it had been with all four boys when they were babies. With Lyra, I grew downright sick of dressing her in the same limited collection of clothes. In May, I went out and bought her some new things sized 3-6 months—they fit but with room for growth. After all, she is my only girl and part of the fun is the pretty clothes. Now, at ten months old and after three months of taking Synthroid, I can finally dress Lyra in the size six months clothes I’ve been longing for her to grow into.
The delays aren’t as noticeable the first year because babyhood milestones have broad acceptable quantifiers of acquisition. You’ll notice more delays in the second year of life. ~A physical therapist from the county who evaluated Lyra at six weeks of age.
It’s been a long time since someone has asked me if Lyra is a baby doll or a real baby (see“Lyra’s Latest: Wee Teeny Peanut”). Not only is she bigger, she’s more active and wiggles in my arms rather than inactively reposing like a dolly. Recently, I began carrying Lyra like a proper baby—on my left hip. Though she does not yet sit up on the floor without assistance, she does sit upright in my arms (and in her bouncy seat, and her Bumbo, and next to anyone who sits with her on the couch). She hangs on to my clothes and, when she can reach it, pulls a silver pendant I often wear into her mouth, biting the cool metal to soothe her toothless gums. She also grabs for our glasses—Jules and Leif are the only people in the house who don’t wear them. Hugo often lets her succeed and she thanks him by coating his spectacles with drool.
Crawling is a four-point system of knees and hands. In Lyra’s physical therapy, we’ve focused on breaking down the components of front and back. When she’s on her belly, we gently encourage her to put weight on her arms. We also take turns sitting cross-legged on the floor with Lyra in the center of our laps. As she leans over a thigh to play with toys set out for her, we bend her legs and make her knees bear weight. We’ve been doing this since April after she mastered rolling over.
At the home daycare both Leif and Lyra attend there are two baby boys just a few weeks older than our girl. At the beginning of the year, I observed these boys rising up on their arms, later finding their knees, rocking on all fours, and eventually crawling. They now stand, albeit briefly, on their own before kerfloping back down on their diaper-cushioned bottoms. Soon they will be walking. It’s hard not to compare. Impossible, really.
And so we were thrilled when, three weeks ago, Lyra began lifting herself up on her arms, both with her elbows bent and with them locked. We continue to cheer for her whenever we see her lift up, doing her baby workout. Come on, peanut, give me five push-ups, lift, lift, lift! Sooo big! Big girl! That’s right! Yay, Lyra, yay!!!
At Lyra’s nine-month-old visit with her pediatrician, Dr. M asked me if Lyra was picking up pieces of cereal with her forefinger and thumb yet. “No, but she grabs them with her whole hand,” I told her. Not good enough. Lyra will be evaluated by an occupational therapist next week. Perhaps we are not objective on this count because she seems fine to us, regularly grabbing at things she wants, like my necklace or our glasses. When seated in her Bumbo, we have to clear an 18 inch circle around Lyra. This is because she will suddenly pivot in unpredictable directions and dart her hands to grab at whatever she sees—a glass bowl filled with apples, half full cups of hot coffee, sharp knives. Okay, no knives, but you get the point, if it’s there, Lyra’s liable to grab it. And really, that’s comforting on many levels. First of all, she’s seeing. She’s then processing the information and thinking (I imagine) gimme that! And, finally, she is successfully directing her hand to grab what she sees and wants.
Erupting from our house this past month are sounds like those from a stadium full of hometown fans watching their team win the championship. Lyra is given robust rounds of cheers when she lifts up on her arms. Her brother, Leif, has gotten many too as he has moved from diapers to underwear, even at night. Last week, Lyra decided to cheer too. If anyone says, “Yay!” Lyra lays open a knowing grin and with her fingers wide apart, she closely watches as her two hands and come together again and again. And we cheer again because it’s mighty cute.
She Poops. Pellets. Occasionally.
One of the many symptoms of hypothyroidism is constipation. And so I was quite hopeful that after Lyra had been on her medication for a few weeks, she would resume having soft and regular bowel movements. Things did seem to improve at first, and then they went back to the hard, black stools, produced every three to five days, which remind me of owl pellets found in the woods. But owls are carnivores while Lyra eats fruits, vegetables, oat cereal and fish when we have it; all of which she washes down with breastmilk. In other words, a diet that should keep things soft and regular.
I know Lyra’s cries better than I recall knowing those of my other babies. She grunts and squawks when she’s hungry but when she’s tired she whines and yells out. When she’s pooping, she hisses out a breathy scream of pain. I quickly move to open her diaper because her clay hard stools get wedged against her diaper. They can back up in her bottom if I don’t take her diaper off.
Recently a friend of ours recommended a homeopathic remedy. When chosen correctly, I’ve seen homeopathic remedies arrest illnesses with such remarkable speed it’s as though someone waved a magic wand. Which remedy to take is determined by what might otherwise seem like an odd assortment of questions. Seated next to me while I was nursing Lyra, my friend noticed Lyra’s head glistening with perspiration and asked, “Does she always sweat when she nurses?” She does. “Does she have trouble with constipation?” Oh, yeah. “Have her try a dose of calc carb, you can get it at the Mustard Seed.”
I bought the remedy a few days later. The information at the store said it helped cradle cap, the waxy debris that forms on the scalps of many babies. Lyra has that too. I gave her a dose two weeks ago. I gave her another one last week. The other night I was abruptly awakened by Lyra’s aspirant cries. “Turn on the light,” I told Max as I grabbed her from the crib next to my side of the bed. I peeled off Lyra’s jammies and cracked open her diaper. A ball of poo rolled forward in her open diaper, leaving no trail. Lyra sobbed as one does after a physical trial and I held her naked in my arms until she was calm.
I’m at a loss for what to try next. I’ve resisted stool softeners as they are not without side effects, but feel I may need to reconsider that decision if pooping does not become a less painful ordeal for Lyra. Whenever I am sure there is no other recourse, she has a couple of softer, less painful movements. And I again hesitate to interfere with I hope is a long, and nearly complete, process towards regulating.
When I pick Lyra up at daycare, I immediately nurse her. She sits in my arms and looks into my eyes, her left eye crossed in slightly, but both seeing me. She reaches up for my hair as I talk to her. When she finishes nursing and is seated in my lap, she repeatedly tilts her head back to look up at me while I talk to Jenny, her daycare provider.
“There is nothing your daughter will not be able to do because of her vision,” the eye surgeon told me several months ago. Last month, he wanted to put Lyra under general anesthesia to conduct a full exam of her eyes. It still takes three of us in his office to change her contact lenses, so examining the interior of her eyes when she is awake is not really an option.
They cancelled the examination, which is treated like surgery, when her blood work came back. After seven weeks on Synthroid, Lyra went from having too much TSH to not enough. The endocrinologist cut her dosage in half and we will test her blood again in July. If she has reached “therapeutic levels” of TSH, her eye surgeon will examine her eyes in August. The postponment of the initial exam under anesthesia was a blessing because the ophthalmologist has since decided that it is time to tighten Lyra’s eye muscles to correct her crossed eyes. Delaying the first proceedure means one less time Lyra has to undergo general anesthesia.
Long ago, in our first visit with her, Dr. M (whose daughter also has Ds) told us about our kids taking hits to the brain. “They have Ds, that’s a hit. If they develop anemia, that’s another hit. Then, if they have open heart surgery, they take another hit.” I asked her if their brains recover from the hit of open heart surgery. “No, the same is true with adults. There’s something about the reduction of pressure during surgery.” I don’t know if the brain takes a hit when undergoing general anesthesia, but it seems to me that it is something best avoided except when absolutely necessary.
As for her crossed eyes, it’ll be good to have them corrected and she’ll have better depth perception, if not overall vision, when they are tracking in tandem. I’ve often wondered which I eye I should look into when talking to someone with crossed eyes, as it’s impossible to keep my two tracking eyes on two different focal points. I don’t have that problem with Lyra and I cannot tell you why. As kitschy as it sounds, I think it’s because when I look at her, I see her with the love I have for her and my brain doesn’t have a chance to natter at me about which eye I should look at. I see my girl. Or my “sweetness” as Jenny calls her.
The Child I Most Needed to Mother
When I was five months pregnant with Lyra, I went to see an astrologer. It was not the first time I had met with this woman, who lives three hours away in Yellow Springs, Ohio. In 1997, Hugo was a colicky baby who cried in my arms while the astrologer, whose name is Lynn, described the meaning of all the various planets in my birth chart. Saturn in this house, the moon in that house, this aspect rising, another descending. Since that time, I have seen her every so often, sometimes after many years, for what is called a “progressive” or where things are now in my chart.
Without going into whether astrology is real or hockum, I recognize that belief systems have long intrigued me. So much so that my primary undergraduate degree is in religious studies. Personally, I don’t put much value in absolute truths, because they are absolutely subjective. I will say that each of my readings with Lynn have resonated in unanticipated ways.
“Your intuitive connection with this baby will be stronger than with any of your other children,” she told me as I sat full bellied in her consulting room. “As a result, this child will know when you are bullshitting and will tell you so. You will not be able to fool her, but she will read and know you with great empathy. Because of this bond, she will be a harder child to leave. Don’t be shocked if you find it hard to send her to daycare so you can go back to work fulltime.
I didn’t ask Lynn any questions about my baby, but she kept returning to her. Nor did I know that the baby I was carrying had Down syndrome, in fact, I’d been told otherwise. And yet Lynn’s description of the baby growing in my womb fit the description of a child with Ds in many ways.
“Because your moon is in Neptune, there is an interesting aspect to this baby. She will be deeply empathetic and so open that you should be cautious of who you let hold her. Do not pass her to someone she does not want to go to.”
After circling back time and again to talk about the baby during my hour long appointment with her, Lynn returned one more time as she ended our session:
“This is the child you most need to mother. Listen, I’m not saying she most needs you, but you most need her. There is more for you in this child, a deeper meaning in being her mother.” And then, almost as an afterthought, she threw out there, “Oh, and expect some sort of giftedness in this child, she’ll be musical or artistic.”
When the boys were little, I posted quotes in places where they would have no choice but to read them. The best spot is next to the toilet. Often, I would take discarded watercolor paper the boys had painted with pastel colors at the Waldorf school. I would cut the paper into shapes, flowers or just round-edged rectangles, and then I would sit down and slowly copy a quote that had struck me, such as one from Marcus Aurelius:
When you arise in the morning, think of what a privilege it is to be alive: to breathe, to think, to enjoy, to love.
Or a passage from a book like The Arabian Nights:
A fool may be known by six things: anger, without cause; speech, without profit; change, without progress; inquiry, without object; putting trust in a stranger, and mistaking foes for friends.
Other times, I would just pin cards to the wall or cut out quotes from the newspaper and tape them up. Of them all, what the boys committed most deeply to memory, and for years have frequently cited, is a small line from a long list of famous things Ben Franklin is purported to have said: Beer is a sign that God loves us and wants us to be happy.
Over time, and particularly when moving to the new house, these scraps of sayings have disappeared. Of all the ones I penned on watercolor so many years ago, the one I think of most often was an abridged quote from the Indiana lawyer-poet, Max Ehrmann:
You are a child of the universe…And whether or not it is clear to you, no doubt the universe is unfolding as it should.
“I recently read that all people with Down syndrome develop Alzheimer’s in their forties or fifties, is that true?” I asked the pediatric geneticist as she examined our two-day-old baby. A few months earlier, I had read a Newsweek cover story about the care of adult children with developmental disabilities. The sentence about Alzheimer’s had leapt out at me even though I had been told there was little reason to suspect the baby I was carrying had Down syndrome or any other medical concerns. When she was born, however, she had several Ds markers—upslanted eyes, a tongue that darted out of her mouth, and sandal toes (her big toes are far from her little toes, almost as though they were attached as an afterthought). Even before we went to the lab to have her blood drawn, we understood that the genetic testing would only to confirm what we already knew. We had known it in our hearts since I had commented, moments after her birth, that Lyra’s eyes looked “kinda Downsy.”
“You know,” said the geneticist, “it’s really hard to predict what you can expect, what with all the therapies they have developed, things have changed so much in the last twenty years for children with Down’s.” That sentence stuck in my head even while the first few weeks of Lyra’s life found us submerged by what having a child with Down syndrome can mean, including finding resources to help us learn what we could about our daughter’s condition and, of course, dealing with her cataracts and eye surgeries. All the while, the geneticist’s words whispered repeatedly in my mind, with all the therapies they have developed.
The remarkable increase in life expectancy in recent decades was one of the first facts we learned about Down syndrome and it highlights the dramatic improvement in the research, care, and therefore, quality of life for a person born with Ds today. In 1985, shortly after Max and I graduated from high school, the life expectancy for a person born with Ds was just 25. Today it is 60 and that number is expected to continue increasing as modern medical research also continues to advance the understanding and amelioration of Ds. Not only are people with Ds living longer, they are living vastly different lives than they would have half a century ago. In fact, as the National Down Syndrome Congress has shown with their “More Alike Than Different” campaign, today most people with Ds can expect to lead rather, well, “typical” lives.
Why Are Things So Different?
Until the 1960s, most children born with Down syndrome were institutionalized. When I was growing up, it was rare to see someone with Ds. I never had a classmate with Ds nor do I recall any special classrooms for children with Ds in any of the schools I attended. And I am not aware of any families who had children with Ds, which doesn’t mean that they didn’t exist, but those that did were perhaps institutionalized and not discussed.
Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in1964, a study was conducted comparing infants with Ds who were institutionalized to a group that were home raised. The study continued until the children were eight years old and found that children with Ds who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.”
It was not until the 1970s that the two major U.S. organizations that advocate for people with Down syndrome, the National Down Syndrome Congress (1973) and the National Down Syndrome Society (1979), were created. Both organizations make clear that caregivers—parents, teachers, friends and extended family—should set the bar high for kids with Ds. Children with Ds most often meet and regularly exceed the goals set before them. The myths on what people with Ds are like and capable of have been falling like scales from our eyes and today there is every reason to expect a baby born with Ds to have a full and productive life, including mainstream schooling, college, independent living, careers, even marriage and (what surprised me the most) driving automobiles. All of which indicates that as a society, we were operating on grossly false assumptions for many decades, tragically so for children born with Ds prior to the 1970s.
Not So Pretty
In the mid-1980s, my father and stepmother worked in a group home for adults with developmental disabilities, including some with Down syndrome. Across the nation, long-standing institutions that had housed people with developmental and physical disabilities were closing and group homes were opening to meet the need to care for many of these people. My parents worked in a freshly constructed ranch-style home, built to house eight residents. In the center of the ADA accessible house was a kitchen and living room, and on both sides of these common areas were four bedrooms, one for each resident.
I was eighteen in the spring of 1984 when I took a Greyhound bus from Tucson, where I was living with my grandma, to Northern Michigan. I had not visited my family since leaving two summers earlier. When my father picked me up at the bus station in Traverse City, the hour long ride to the house was awkwardly filled with fits and starts of conversation. We had not yet talked about why, after living with him and his family my junior year of high school, I had decided to return to Ohio and live with my mother for my senior year. And we never did. Instead, we talked about my half-sisters and other people we both knew. Eventually my dad began telling me about the job working at the group home and we both relaxed. My dad felt like he had finally found his career calling and with his eyes cast on the road ahead of us, he effortlessly described his work, the words pouring like water from a full pitcher.
The day after I arrived, my dad took me to the group home to meet the people he worked with. Many of the residents were in wheelchairs and most were overweight. When my father talked with the residents, introducing me to each of them, I could not understand what they were saying. I tried to be friendly, but the truth was, I couldn’t wait to leave. I didn’t see people, I saw drool and adult diapers.
“How do you work with those people every day?” I asked my dad when he got home, “Isn’t it depressing?” Which was a fair question. Depression was like a card my dad carried to excuse himself for his significant inactions, especially as they related to those of us who, from time to time, would reasonably wish to lean on him. People like his wives and children. Then again, I ask myself, who among us has not risen to his or her better self with strangers while our seamier aspects are saved only for those who know us best?
“You know, Hol,” he told me, “if you got a job there, after a week you would no longer notice the disabilities of the residents. They’d just be the people you worked with, just like anywhere else.”
“But they aren’t like the people anywhere else,” I said.
“Actually, they are. You would soon know them as Jim or Bob,” he said naming a few of the residents at the group home. “You’d know what they like and how they’re doing, just like you would with anyone in any job. And really, Hol, you’d no longer see their disabilities, you’d just see them as the people they are.”
Let me stop and say that I am not upset with the younger me who, the first time I was introduced to severely disabled adults, recoiled. At the same time, my chest physically aches to think that anyone would feel similarly about my daughter when she is grown. My ignorance was ugly, but I did not remain ignorant.
As with many things, education builds awareness, exposure builds understanding.
My father worked at the group home until he moved to Arizona in the early 1990s, where he also worked with adults with developmental disabilities. Over the years, I came to feel I knew some of the people he worked with because of the stories he shared. Many had spent their entire lives in institutions, which was at the root of some of their more difficult behaviors. For instance, both my parents told me they worked to get the group home residents to eat their meals slowly and not scarf their food without swallowing. In the institutions, residents were fed in large cafeterias with little oversight and many had learned to eat as fast as possible in order to prevent anyone from stealing their food. Back then, eating at a table in the group home was often a resident’s first experience in family style dining with no threat of bullying.
My dad became particularly close to one of his clients in Michigan. A quadriplegic, Jim found work typing out address labels (this was before computers were ubiquitous). My father jerry-rigged a helmet by affixing the writing end of a pencil above the center edge of the helmet’s brim. With the helmet strapped firmly under his chin, Jim’s head bobbed over an electric typewriter as he used the pencil’s eraser to type out names and addresses on sheets of labels. Jim used the money he earned typing labels to buy gifts for his girlfriend. She lived in a different group home and Jim saw her on weekdays at the adult day care facility they both went to. Like Jim, his girlfriend was in a wheelchair. But on more than one occasion, the two of them somehow managed to get their shoes and socks off and were found sitting away from any activity, their bare feet entangled.
One evening when I was living in Boston, my dad called me from Arizona. In 1995, before cell phones found their way into everyone’s pockets, long distance calls were expensive and, thus, infrequent. Claude was a year old and I’d long gotten over my squeamishness of body fluids. Beyond diapers, I’d thought nothing of holding my baby as he repeatedly vomited on me a few days before his first birthday. Comforting my child trumped the sour smell of puke. Sure, he was a baby, my baby even. But nothing could have made me love him any less than I did including, as I discovered a few years later, a learning disability.
“My friend Jim died,” said my dad when he called. It was the closest I’ve come to hearing my dad cry. Maybe he was crying. I didn’t ask.
“Who’s Jim?” I asked instead and he reminded me of the resident in the Michigan group home. Once he’d moved to Arizona, my dad came home only a couple of times for important events like weddings. When he did, he always went over to the group home where he’d worked to visit Jim. My dad did not learn about Jim’s death until weeks after his funeral, but even if he had learned immediately, he would not have been to leave work and travel so far on short notice. Sitting in my kitchen in Boston, I listened to my father as he talked about his friend at length, a telephonic memorial service of two.
Those Therapies They Have Developed
One of the common issues that nearly all children with Down syndrome face is hypotonia, or low muscle tone. It can cause them to have trouble eating, speaking, learning to sit up, crawl, walk and run. (For more on the challenges facing babies with Ds, consider clicking the link for this well-written post from the blog, “Noah’s Dad.”
As expected, Lyra does have hypotonia, but I believe it is only mild to moderate. She does not spring with wirey muscles like my boys did when they were infants and babies, but neither was Lyra ever a “limp noodle” as so many babies with Ds are described. When she was four months old, I began taking Lyra to both speech and physical therapy at an office recommended by our pediatrician, Dr. M.
Physical Therapy or Breaking It Down to Pull It Together
When my dyslexic sons, Claude and Jules, learned to read, we had to break down the cognitive understanding of sounds and symbols. With Jules, I had to spend months making up silly rhymes and alliterative phrases so that he could hear the similar sounds. Once letters and their sounds were memorized, all combinations had to be taught. And because the English language is comprised as much of exceptions as it is rules, countless “sight words,” or words that don’t follow the rules, had to be memorized too.
So it is teaching Lyra to move her body through space—something I took entirely for granted with my four previous children. The first thing Lyra’s physical therapist, Heather, showed me was to pull Lyra up into a seated position by her wrists. Lifting Lyra slowly, her neck muscles engage and get a work out. By the time she was five months old, she was not only holding her head on her own but she keeping it upright as we bounced her on an exercise ball. Yes, the exercise ball is a big part of her PT, which for now has the overarching goal of getting Lyra to sit up and crawl. Lyra gets a better abdominal and arm work out each day than I do (though my muffin top and bat wings tell me I need to correct that).
Little things feel like milestones. Things like Lyra jumping in her bouncy seat, her head held erect as she springs her body up and down, or rolling on the floor from her back to her tummy and over again onto her back, or purposefully reaching her hands and arms towards a toy she wants, or sitting upright in the middle of our laps where we can catch her when she lists. Lately, Lyra’s been bearing weight on her hands and arms when she is on her tummy, a sure sign that crawling is coming. We want Lyra to crawl, and crawl for a long time, not only so she can move herself to where she wants to go, but also because of the well-documented, kinesthetic brain development that crawling enhances.
Speech Therapy or Everything to Do with the Mouth, Including Eating
For two months, Lyra’s speech therapist helped us try to teach Lyra to take a bottle. When she was nearly six months old, we all gave up. This is the first of what I suspect will be a lifetime of wondering whether something about Lyra is simply her personality or her Down syndrome. With the bottle, I believe it is personality. She breast feeds like a champ, which requires more muscle strength than bottle feeding. However, the time spent with the speech therapist was not invaluable as we learned many mouth exercises that we continue to practice. These exercises, mostly mouth massage—both inside and out—have helped Lyra “organize” her mouth. As a result, her tongue thrusting has greatly reduced and she has had no trouble learning to eat solid foods from a spoon.
Later this month, we will revisit the speech therapist to evaluate Lyra’s speech. But at nine months old she has long blown raspberries, babbles what sounds like the cadences of a distance conversation and then, as if providing commentary on the speech of those around her, will say, “Blah, blah, blah.” These are all very good signs for speech development.
My Head and My Heart
When I hold my baby girl, I do not see her Down syndrome, I see my daughter. We all adore her and love to make her laugh, but she is mostly like any other baby. Jules delights in walking his fingers up Lyra’s sides to her armpits to get her to belly laugh. Leif holds Lyra’s hand and jumps with her as she hops up and down in her bouncy seat. All too often when they are playing on the floor, Lyra manages to grab a fistful of Leif’s long hair and pull it with all her might, causing her brother to scream in pain. The big boys send Max and me on dates, willingly keeping both of their younger siblings, caring for them with a naturalness that belies experience.
But here is a true confession that makes me cringe: I am still a work in progress. I know in my head that when she is older I will see and love Lyra as I do now. Maybe she will be as accomplished and “mainstreamed” as the adults with Ds in the “More Alike Than Different” video. But maybe she won’t.
I recently saw a lovely child with Ds, who was perhaps nine-years-old, happily engaging other people, especially little children. But when she spoke, I could not understand her and in that moment, and I felt the scabs peel off of my heart to reveal how attached I am to speech. I had to take Lyra to a corner of the room and nurse her while I quietly wept. I looked down on her dainty round head and, wondering if she’d ever speak clearly, I felt smacked by what is not alike, but different, about my child with Down syndrome.
A few moments later, a young mother whose son is only weeks older than Lyra came and sat by me. She has a soft voice with a southern accent I cannot place, but which calmly drew me out of my sorrow. She told me her child could not keep food down because of reflux and he was chronically ill because, as they had recently discovered in a swallow study, he aspirates his liquids. A first time mom, this woman’s dedication to her child is both fierce and gentle. Knowing how overwhelmed I was with my firstborn, who had no physical challenges whatsoever, this woman’s tender acceptance of her child and his mighty challenges guided me back to my center and I stopped leaning into my fears of the unknowable future.
We are a very verbal and literary family and we all enjoy talking, reading and writing. Two of us have made careers out of it and Claude may well too. My head tells me that Lyra will communicate effectively because she already does. She is not shy and her desire to interact with other people will propel her abilities to speak and/or sign (just as my own extroverted nature helped me learn French when I was a student in France). As her life unfolds, my heart will catch up with my head and I will continue to see my daughter as the person she is, not the extra chromosome she has.
What gets me into trouble is forgetting to stay in the moment.
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.
“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.