Musings of a Marfan Mom

Talking to Your Kids About Disability

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Yesterday the boys and I went to church with my mom. Vacations from school tend to be hard for kids on the spectrum, and this break is particularly taxing on M. Not only is he not in school, but we’re in another state, in a house he’s never been to, with family he hasn’t seen in awhile, in a different climate, and without his dad (Mark left a couple days ago to go back to work). We’re all feeling a little stretched and worn.

So, to cope with this, M was using his chewy at church. It’s basically a necklace with a rubber charm that is safe to chew on. It keeps him from chewing less appropriate things, like his clothes. He was also fidgeting in his chair like WHOA. He’s not yet 5. Church is long. It happens.

Once the service ended, M noticed a girl his age in a frilly, bright pink dress. “You have a pretty dress,” he told her. She glared at him and hid behind her mother’s legs.

“That was nice of you to say, M,” I told him. I thought maybe the girl was just shy, till she asked (and not in a curious way), “Mommy, why is he chewing that thing?!”

Her mother shushed her and pulled her away.

M didn’t appear to notice, but I tried not to cry. I thought about saying something, but I don’t want to call attention to things he doesn’t notice.

For every person who acts shocked that M is autistic, we have instances like these, where other kids notice and don’t want to be around him. It’s heartbreaking. But what was more frustrating I think, was the mother’s response.

I get that talking about disability can be uncomfortable. I get that without experience, you might not know what to say. My plea to all you parents of typically-developing kids is this: Please do not shush your children and make this a taboo subject to talk about. In doing so, you create an air of mystery about disability, or even make it appear to be shameful or embarrassing.

In this situation, although asked in a rude way, it’s a legitimate question for a little kid to have. My son is hanging sideways in a chair with a necklace stuffed in his mouth, chomping away. It looks weird, I know. The best response here would have been “I don’t know, why don’t you ask him nicely?” M would have told her straight up. He’s not embarrassed about his chewlery. There’s no reason to be. But if not that response, the mother could have said “looks like a necklace,” or, “I don’t know but it makes him happy.”

Instead, a teaching opportunity was lost. The chance for a connection was lost.

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