Musings of a Marfan Mom

Talking to Your Kids About Disability


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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  1. And that mother’s discomfort with disability is WHY her child is not empathetic. Children are taught attitudes by example.


  2. Children learn from what they live. Oddly I learned that it’s better to ask from a friend who was born with out a hand. Lee asked her what happened and I went to shush him and she said let him ask, that it was okay to be curious. Lesson learned.


  3. That’s a great lesson. I talk a great deal with the boys, particularly Joshua, about how or why people may be different. But I may have also shushed him in front of the other child and then had a conversation with him in private. I appreciate hearing this kind of advice. However, I think to some extent it also depends upon the type of disability as to whether questions or comments are appropriate. I have an uncle with significant mental illness, and he would be unable to handle anyone asking any type of question about what is wrong or why he looks different, etc. Sometimes it is difficult to discern how to best handle this type of situation.


    marfmom Reply:

    Yes, it can be difficult to tell when it’s appropriate. I’m not sure what the answer is. I know that most people I know would prefer to be asked. I’ve definitely read a blog post or two where people get upset about it, and as you said, a particular diagnosis could also make that more difficult. If M had been having a meltdown, I’d rather not be asked because I’d be trying to help him calm down.


  4. Thank you Maya, and Heather for your thoughtful comment. Many times we’re told what not to say, but not what TO say. And yes, sometimes questions appropriate for one person or family are not the best for another. I may not have wanted to invade your family’s privacy but I often remind my kids that we usually can’t change what we’re born with.


  5. Not everyone knows how to react in every situation. I wouldn’t have known what that chewy necklace was until a few weeks ago my granddaughter who is working in child care told me about having 5 biters out of a class of 12 under her care. The kids are redirected to use their chewy instead of biting other kids. They are too young to use their words to express frustration. Certainly by hearing your experience now I have a better understanding. People don’t mean to be unkind, they just don’t know how to handle a new situation a lot of the time. And I think it was sweet of M to complement the little girl on her pretty dress. He sure is loveable because that is how he is being brought up.


  6. I hate it when I let teaching opportunities like that pass me by…


  7. Another great post. I know the exact feeling you are describing. When my boys were on oxygen as babies, strangers would peer over their stroller expecting to see two cherubs, and many would be shocked to see the oxygen prongs on their faces. Others would keep their eyes from even looking at the boys. And that hurt. All I could see was two beautiful babies, and that is what I wanted the world to see as well. Maybe it’s because we don’t want to ever think babies or small children can be sick. But the truth is, on oxygen, my boys scared people.

    Sometimes, other children would get curious. They’d point and ask their parents, many of whom would shush them and try to shuffle them away. Whenever a small child would approach and ask about the prongs, I would smile. “They help the babies breathe,” I’d explain, then be extra sure to smile at the child’s Mom or Dad to say it was ok.The kids would just nod, say “oh, ok” then run back to their parents as if it were no big deal.


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