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Sometimes I Forget My Son Has Down Syndrome

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Sometimes I forget.

Don’t get me wrong, I don’t actually forget my son has Down syndrome. It is with us every day when we slog through reading basic books, every time I struggle to understand what he is trying to say, and every time I wonder if he doesn’t understand what I said or is just choosing to ignore me like a typical kid his age. Down syndrome is a daily part of our lives.

But that’s just it: it is constantly there. It is our normal. So sometimes I forget it’s, well, not normal for everyone else. We just go through our days, encouraging, teaching, making accommodations where needed and loving life with Joey. You know, just doing what’s “normal” and forgetting — until someone else reminds me. Maybe it’s a look, a whispered comment, a quiet step back and then I’m all too aware.

Last week we went to the zoo, just Joey and Mommy. My kids attend two different schools, so their days off don’t always line up. At first, I missed the extra time to myself, but since Joey’s interests are quite different than my teenagers’, I actually enjoy the separate days with just him or just my older kids. And the zoo is one of his favorite places in the world, so what better place to spend some one-on-one time?

We had a great time. We spend a lot of time at our local zoo, so Joey knows the plan — that the best animals are first (the penguins), where the carousel is, and the prime spot for viewing the grizzly bears. He runs from exhibit to exhibit at top speed, belly laughing with pure joy.

My feelings on this particular day were a little more mixed, though. We spend so much time in our bubble of normal — with friends and family, at church and at school — that I hadn’t been prepared for the reactions to my beautiful boy. I don’t mean the handful of kids who proclaimed, “Wow! He doesn’t have any hair!” That doesn’t bother me, it actually delights me. I love opportunities to share more about Joey with those who are sincerely curious.

Katy with her son Joey.

I hadn’t prepared myself, though, for the frozen smiles of adults who quietly ushered their children away from mine. Or the whispers and head nods between adults who wondered what was “wrong” with my son, who thought they were somehow sparing my feelings by not addressing us directly. (Spoiler alert: They weren’t.) I hadn’t expected people — kids and adults alike — to stare and withdraw slightly from us as we stood in line for the train.

It seems I forgot. I forgot that we are different, and that sometimes people fear what they don’t understand. Let me be clear: no one was mean to us. No one called my son names or told us we didn’t belong. They just saw something — someone — different, and they reacted.

So what do we do, my fellow mamas and dads of kids with disabilities? What do we do when people don’t know how to respond to us?

The way I see it, we have a couple of options. Sure, I could have gotten angry and lashed out. I don’t really see that as being a likely way to make people not treat us differently, do you? I might have loudly and passive-aggressively announced what an amazing boy Joey is and how it is just so sad when other people don’t see that. But again, I don’t think shaming people generally leads them to growth and understanding. I could have nursed and nurtured my hurt feelings and let their reactions ruin my day. But what good would that do? It would only have robbed me of the joy of watching my son loving his best life at his favorite place.

So I picked option D. I focused on having a fantastic time with my son. When I heard a child asking a question about Joey, I happily stepped in to answer and introduced them to him. I thanked God for the amazing family and friends who know and love Joey for who he is. And I continue to look for opportunities to show grace to those who don’t understand — and to kindly help them learn. Because Joey is so much more than a diagnosis or a difference. And he is definitely worth knowing!

Originally published: October 28, 2019
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