What You Can’t Tell About My Child With Down Syndrome Just By Looking

World Down Syndrome Day 2012 is tomorrow, Wednesday March 21, and events will be happening around the globe. The event on this blog: A guest post by Amy Julia Becker, a writer and mom of three. Her oldest daughter, Penny, has Down syndrome. Amy Julia blogs at Thin Places; her most recent book is A Good And Perfect Gift: Faith, Expectations And A Little Girl Named Penny. No matter what kind of special needs your child has, you’ll relate to what she has to say.

Two hours after our daughter was born, she was diagnosed with Down syndrome. The pronouncement shocked and saddened me, but I also felt confused. I thought all people with Down syndrome looked the same: Flat nose. Thick neck. Epicanthal fold of skin around the eyes. Short stature. Cherubic expression.

But I couldn’t see it. When I looked at our daughter, I saw pudgy cheeks and deep blue eyes and long eyelashes and a full head of black hair. I didn’t see Down syndrome. I saw Penny.

Whenever we went out together, I wondered—can people see the little girl that I see? Or are they only able to see a label, a diagnosis, a set of assumptions about who she must be or what she might not be able to do? I imagined a legal document that had been stamped with big red letters, “DRAFT.” And I wondered if people would only be able to see the big red letters, the markers that she did hold in common with other children with special needs. I wondered who would be able to read the letters underneath.

There are days when I have found myself reading those red letters: When Penny was two and I assumed she was throwing her cup on the floor due to a delay in development (I asked about it, and her therapist cocked her head and said, “Or she’s throwing her cup on the floor because she’s a two-year old”). When I thought it was because of Down syndrome that she was playing by herself during a play-date (and then I discovered that many first-born children do the same thing). When I attributed her misbehavior in school to learning disabilities (and then we put tubes in her ears and she could hear her teachers and the misbehavior disappeared).

But for the most part, I read the fine print. I see the sweetness of a little girl who wakes up every morning and whose first thought is to cuddle with me. The empathy of a little girl whose eyes well up with tears when one of her siblings starts to cry. I see the tenacity of a kid with low muscle tone and pronated feet who volunteers to go on stage and perform when the Irish dancers come to school. The perseverance of a child who asks every night, “Can we do some reading homework?” and who is, slowly, one word at a time, beginning to read whole books out loud.

I see the reasons to rejoice in her particular loveliness, and I see the challenges she faces. I see a world that rejects her because she will never conform to cultural ideals of beauty or success. I see a world that ignores her because she will never be fast enough or smart enough. I see the things that will make it difficult for her in the future—the trouble she has with math concepts, her insecurity in many social situations, her unwillingness to try new things.

A friend of mine has a poster on her wall with hundreds of children’s faces. Each child is dressed in a black t-shirt. Somehow, despite the uniform dress, or perhaps because of it, the striking result is not a sea of faces that look the same but rather a wall of particularity—the playfulness of that girl’s smile, the serious look on that boy’s face, the shaggy hair, the gorgeous eyes, the straight nose, the high forehead. It’s a wall of human diversity, and yet every one of the children has Down syndrome.

Penny is six years old now, and now I can list the physical markers of Down syndrome that are present in her body—her beautiful eyes, her pixie nose, her short arms, her thin hair. And now her diagnosis neither shocks nor saddens me. But one thing has remained the same since that first moment in my arms in the hospital. When I look at our daughter, I don’t see Down syndrome. I just see Penny.

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  1. [...] with special needs. I wondered who would be able to read the letters underneath.To read more, click here. (This post is the beginning of a guest post on Ellen Seidman’s blog, To the Max, in honor of [...]

  2. by Angela

    On March 21, 2012 at 1:35 pm

    An amazing woman with an Amazing family. God bless you all. Penny, you are beautiful and noone can ever say different! <3

  3. by Stephanie

    On March 21, 2012 at 2:02 pm

    She is such a beautiful young lady :) . Those with down syndrome can do more than close minded people think and it saddens me that the majority of society see someone with a disability and can’t see anything past that. Beautiful story and beautiful young lady :)

  4. by Tracy

    On March 21, 2012 at 5:43 pm

    Thanks for the fantastic article! Our daughter, Harper, was born on 4/15/11. Like your daughter, we learned that she had Down Syndrome after she was born, which was a shocking experience. We can relate to everything you said. And we have some anxiety about some challenges that Harper will face in the future. My logic is that Harper came into our lives for a reason and we will do our very best to enable her to live life to the best of her abilities.

  5. by Kathryn

    On March 23, 2012 at 3:40 pm

    My buddy in BBI has Down Sydrome.She is one of the sweetest,funniest people you will ever meet.

  6. by Brandy Turner

    On March 26, 2012 at 10:32 am

    My daughter is 6 years old and she was diagnosed with Down Syndrome. She has the prettiest Red hair and the funniest little girl I know. I feel the same way, I do not see Down’s when I look at her, just Madison. Great story.

  7. by Andreas Moser

    On April 1, 2012 at 11:03 am

    Only a bit more than a week after Down Syndrome Day, I was shocked by an Easter procession in Malta yesterday. Of all the participating children, one was visibly suffering from Down Syndrome. And guess which role they gave him to play? Have a look: http://andreasmoser.wordpress.com/2012/04/01/dingli-easter-procession-children/ – and be prepared to be shocked.