Mark W. Leach

@mark-w-leach | contributor
Mark W. Leach is a father, attorney, bioethicist and blogger who writes on the issues surrounding prenatal testing for Down syndrome. As part of his blog, he sometimes feature posts about his daughter, Juliet, who happens to have Down syndrome.
Mark W. Leach

A Decade With Down Syndrome: What a Difference 10 Years Has Made

This past Saturday, we had an opportunity to see what a difference a decade makes from the day you receive the diagnosis that your child has Down syndrome. This past Saturday, our friends Jim and Mynique McDonnell threw a birthday party to celebrate their oldest child, Parker, turning 10. It was quite a celebration. Jim and Mynique have regularly played the hosts with the mosts over the years. Fortunately, my family is on this invite list. Indeed, we were one of the first in this circle of friends. This is because, Parker’s parents learned he had Down syndrome, like our daughter, Juliet, when he was born. Parker’s aunt and I worked at the same law firm, and she connected Jim and I. Soon, my wife and I were visiting Jim and Mynique in their home, holding Parker and sharing what we’d learned up to that time, with Juliet being six months older than Parker. In those early days, every parent wonders what this life holds for them. Other parents have shared their concerns of when/if their child would walk, talk, run or play with other children. It’s just such a time of the unknown and every concern imaginable can cross a parents’ mind. This is not to say that these were Jim or Mynique’s concerns, but they are common concerns. Fast forward ten years to the scene this past Saturday, and you will see how those concerns can make us parents shake our heads almost in disbelief. In disbelief because at this party — held at one of those jump-house indoor places — you saw boys and girls with Down syndrome ranging in ages from 6 to 10 running, climbing, shooting baskets, scaling a ladder to then slide down a huge slide, and talking, laughing and carrying on with each other and the siblings without Down syndrome. I don’t know how many others took a moment to take it in — because this really is just the life we’re all used to at this point — but I sure did. I remember just five years ago when I would have been moving through the same obstacle course to help Juliet wind her way through the tubes and slides, her mother ever watchful, noticing every move to make sure Juliet didn’t take a tumble. Now, five years later, her mother went out with her girlfriends to a nightclub while I barely knew where Juliet or James were throughout the whole party. This is not to say each of these kids have not faced their own challenges. Juliet is unfortunately in what seems to be an every-other-year down cycle at school; another little girl had to travel to a specialist to disconnect a tethered spinal cord; some of the other kids have behavior issues that are being addressed; and Parker has received special instruction and hearing aids to minimize the effects of congenital hearing loss. But, even listing those conditions would ignore that Juliet’s brother, James, had a down year at school last year and had an MRI as an infant because of a possible tethered cord. I spoke with a mom there who would be a teacher for a close family member of mine who is attending the mom’s school for children with behavioral issues (and this family member only has 46 chromosomes). And during the time for pizza and cake, I saw a fellow father sign to his daughter some words, not because his daughter was hearing impaired, but because she had learned sign language as a child and that is an effective means of communicating across a loud room. So, some of the same challenges faced by those children with Down syndrome have been faced by their siblings and family members without Down syndrome. This group of parents used to meet once a month at Down Syndrome of Louisville (DSL) when our children were just babies. We would sit in a circle and exchange tips on therapies and share concerns. Then, our children attended weekly group developmental intervention therapy classes, readying them for preschool and kindergarten. Now, they attend school-age programming once a month. None of this – absolutely none of this – could’ve been envisioned when Juliet and Parker were born ten years ago. At that time, the concerns outweighed the dreams, at least for me. I worried about Juliet meeting developmental milestones as a child, thriving in school, having true friends. I couldn’t see that Juliet would introduce me into an entire circle of friends I probably would have never met otherwise, or that those friends would be some of the strongest friendships because they were forged during times of trials with each of us supporting the other. And, I couldn’t have envisioned that it would be my son who chose to play with Parker almost the entire evening and on the ride home, say more than once: Parker’s awesome. Indeed he is. Happy birthday, Parker. What will the next ten years hold for all of us? James, Parker, & Juliet This post originally appeared on Down Syndrome Prenatal Testing.

Mark W. Leach

My Daughter's Hands Told Us About Her Having Down Syndrome.

The hands of people can tell you many things. The hands of those with Down syndrome are no different. Beyond palm reading, noticing a person’s hands can tell you a bit of their story: dirt under the fingernails of someone who works in the garden, calloused palms of someone who pulls ropes on a ship, soft hands (like mine) from typing on a keyboard all day in an office. For people with Down syndrome, hands can even suggest their diagnosis. Prenatally, one of the soft markers for Down syndrome is a shortened pinky finger, which may curve inward, termed “clinodactyly.” This is a “ soft marker ” because such a finding by ultrasound is not definitive for any chromosomal condition, but it can suggest an increased likelihood for Down syndrome. Postnatally, a common characteristic pointed out to parents is the “single palmer crease.” Most people have two major lines across their palms. Some people with Down syndrome only have a single line. But I had this thought this past Sunday while observing my daughter’s hands at church. I watched how she used her index finger to follow along with the words in the hymnal how her other hand was clasped, as though she was holding a microphone, because when Juliet sings at home, she uses a karaoke machine to sing along how she held the small pencils in the pews as she worked through a seek-and-find how she turned the pencil around and around in her fingers in one hand how she intertwined her fingers as she prayed. Following along and singing the words of hymns were the result of years of inclusive schooling and work at home teaching Juliet to read. Those fine motor moves – holding a pencil and twirling it – were the result of hours and hours of occupational therapy. As Juliet sang and prayed aloud, I also thought how the first way she communicated with us was using her hands for sign language. When Juliet was born and her pediatrician talked about the single palmer crease and small pinky fingers associated with Down syndrome, that became my focus. But, now, 10 years since her birth, I notice those characteristics very seldomly. Instead, I marvel at all the things her small, soft hands can do. I suspect that’s the case whenever a diagnosis is given. A diagnosis is reductive. Before the diagnosis, your child is this being of unlimited possibilities. You spend your days dreaming about what he or she may do. After the diagnosis, your child is reduced to being just the medical condition, and the possibilities seem limited. But, given time, the fullness of your child returns. The diagnosis just becomes another part of her, but not the defining part of her, and you again marvel at all your child can and will do. My daughter’s hands told us about her having Down syndrome. They tell us so much more than that now. This post originally appeared on Down Syndrome Prenatal Testing. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .