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“Why? Does Amy have a mental disability?”

posted Tuesday February 18th, 2014

For a long time — longer than I like to admit — I thought of Sophie as my kid who has Down syndrome. Somewhere along the way, that fell aside. And it’s not like I never think about it — I think about it dozens of times a day, I bet — but most of the time, Sophie is just Sophie.

I don’t give the rest of the world as much credit — and maybe I should. Here’s a good example.

Recently, we got the chance to spend the entire day with one of my best friends and her family — her husband and two boys, both in middle school. Annabelle and Sophie love these boys, the husbands have something to say to each other, and it’s always a treat to spend time with my friend. Life is too busy; we don’t get to do it enough.

It was a great day. The worst part was when it came to an end. My friend’s younger son wasn’t happy about that, he wanted us all to come over to his house to see his tortoise. We promised a rain check and headed home after a flurry of hugs and air kisses.

Last night, the phone rang. It was my friend. (And here I’ll paraphrase.)

“So we were talking at dinner about how it’s not appropriate to use the R-word,” she began, “and I said, `You know, Amy and Sophie would be really sad if they ever heard you use that word.’”

At that point, her younger son looked confused, and asked, very sincerely, “Why? Does Amy have a mental disability?”

I laughed till I couldn’t breathe, and my friend was chuckling pretty hard, too.

But after we hung up the phone, I got a little teary, thinking about how awesome it is that this kid — I think he turns 12 next month — only sees Sophie as another little kid, a girl who likes croissants and is always up for a game of Go Fish.

We ate lunch outside the other day as the four kids played tag, and it’s true, Sophie couldn’t quite keep up. But she held her own, and had fun, and it was okay that the other three had to slow down at some points for her. Watching the game was a reminder that as hard as it is, mainstreaming is worth it. Fighting to keep her with her peers in junior high is worth it. And pushing her out there into the world is worth it — and not just for her benefit.

And now if you’ll pardon me, I’m going to climb down from the soap box — and  go back to giggling.

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Tags: Filed under: Down syndrome by Amysilverman

4 Responses to ““Why? Does Amy have a mental disability?””

  1. My oldest son, who is seven, has a classmate with Ds. I occasionally ask him things about her and even used her as an example when I tried to explain his little brother’s extra chromosome. He doesn’t get it. He just doesn’t recognize any difference. I’m interested to see how his awareness unfolds as he gets older. When did Annabelle ‘get it’? Does she ever lament her sister’s disability?

    Still thoroughly enjoying your posts. Thanks for your honest perspective.

  2. Happy dance! And who says soapboxes and giggles have to be mutually exclusive?

  3. Hey Amy — Annabelle “got it” a while ago — she’s 12 now, it’s been a few years. Sure, there are sibling issues and I know she gets frustrated with Sophie but I have to say that mostly she’s just really into her sister…. Recently she posted a picture of Sophie on instagram that said something like “Sophie >>>>> the rest of the world.” I’ll take it! Your son will get it; I think it’s cool that for now he doesn’t. :)xo

  4. That is AWESOME! :)

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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