On World Down Syndrome Day, Three Truths

21 Mar

Today is World Down Syndrome Day – 3/21, representing the three copies of the 21st chromosome that define Trisomy 21. With a Little Moxie is hosting a bite-sized blog hop (thanks for getting me writing, Meriah!).  She suggested posting three truths – one fact, one fallacy and one photo – in the spirit of promoting understanding and inclusion. So here I go.

FACT: Understanding comes in small moments. Pay attention.

This is hard to describe in words, but I remember the first time I felt some clarity about what it was like to be my son. Not to be his mother, but to be him.

I watched him play in the backyard with his sisters two summers ago. He had recently become a sturdy, independent walker and was a few months away from turning 3. Our nature-loving girls were flitting around, grabbing grass, leaves, worms and whatnot, pulling pieces of branch from our trees and collecting them in sand buckets. Being his sisters of course, they have never excluded him from their games, but nor have they often made special effort to include him; he must fend for himself, which is just as it should be. He followed them around like a puppy, picking up things and dropping them again, tripping sometimes but regaining his balance. Often he fell forward, but stood right back up. He oohed and aahed, not saying words exactly but mimicking their cadence, imitating their pretend play. He craned his neck to see inside their buckets, always a step behind but yearning to be right where they were. Yearning to be right where they were. It hit me in a flash. Here was a small boy, gentle-souled, wanting only to be a kid, and totally succeeding without ever noticing all the walls that had to be knocked down along the way.

FALLACY: People with Down syndrome are not smart.

Though they may not be intellectuals in the academic sense and often their skills cannot be measured accurately on standardized tests, people with Down syndrome can accomplish great things. Because they are good visual learners, many children can read at or above grade level. Most attend regular schools and do everything their typical peers do. These days, more young people with Down syndrome are going to college, learning to drive and getting married. Among the most impressive gifts people with Down syndrome posses is a finely tuned emotional intelligence. It is one of their top strengths – yes, strengths. We assume that people with disabilities are flawed and our thoughts about them stop there.

Well, all of us are flawed. And all of us, including people who have Down syndrome, or people who are totally nonverbal or immobile, possess unique talents. One of my son’s talents is a cleverness about how to manipulate people. If you don’t believe me, try sitting near him with your iPad or smartphone and see how readily he chatters to you about his favorite things like Mickey Mouse or animals, sidling up to you and nearly sitting on your lap like he is in love. What he really wants is for you to let him play a game on your device – he loves people, but he loves electronic things most of all. And you will let him play this game, because isn’t he just the sweetest thing? (No, no he isn’t.)  Don’t ever treat a person with a cognitive disability – or anyone, really – like they are dumb. Chances are they understand more than you can ever imagine and posses a profound relationship to their world.

PHOTO: Schoolboy, 2012

School has been such a blessing for him and for us. We love it!

Schoolboy

At the top of this post, I mentioned that World Down Syndrome Day is about understanding and inclusion. And it is. But after the recent tragic death of a young man with Down Syndrome at the hands of the police, it is also about action. Read more: a pitch perfect editorial from The New York Times and a very comprehensive article by Maureen Rich Wallace that explains it all.

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6 Responses to “On World Down Syndrome Day, Three Truths”

  1. Lizz March 21, 2013 at 9:31 am #

    This is brilliant & moving. Thanks for sharing. We’re relatively new to life with DS, our son is 8 months old. I love reading about other little ones with DS, I find it really reassuring & positive xx

    • modernmessy March 21, 2013 at 10:24 am #

      Thanks for writing in, Lizz! I appreciate your comments. Congratulations on your son and I can’t wait for you to see what interesting things the world will have in store for you and your son in terms of new friends, new community, fascinating writing and loads of activities to enjoy.

  2. TUC March 21, 2013 at 11:06 am #

    “totally succeeding without ever noticing all the walls that had to be knocked down along the way”

    So true.

    • modernmessy March 21, 2013 at 11:52 am #

      I’m glad that part made sense. Sometimes I worry I’m overthinking things, but I’m glad it resonated with you. Thanks so much for leaving a comment.

  3. Meriah March 21, 2013 at 11:21 am #

    fantastic post. I couldn’t agree more with the fallacy – that’s been one floating around in my head for a while now – just sheer incredulity that people can equate ID with stupidity – when little could be further from the truth.

    • modernmessy March 21, 2013 at 11:54 am #

      thanks for your comment, Meriah. I think that is a revelation to many people, especially if they have no experience with intellectual disability. Before I had my son, I would not have known that either. I always try to put myself back in the place I was before him so I can identify where people are coming from and fill in the gaps in their knowledge. Just loving all these conversations you started.

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