For the People Afraid to Ask Questions About My Child With Disabilities

I recently had a friend tell me she was not sure it was OK to ask me questions about my child who has multiple disabilities. In fact, she told me she wasn’t even sure the right questions to ask to begin with. And it got me thinking…

When we see something we don’t understand or is different we feel compelled to want to know the “why” or the “what happened.” Perhaps it’s part of the survival instinct. So, often times when someone approaches me and says, “What’s wrong with him?” my instinct is to say back, “Rude people are what’s wrong with him.” When I shift my schema and recognize that even in those awkward moments there is the possibility to make it teachable, I can have a lot more empathy for the individual asking. After all, I am not sure I am that much more comfortable with a stranger asking me a more direct question either. If someone were to asks, “Why is he making that hooting noise over and over?” I might have absolutely no idea myself in the moment.

Parents, whether we like it or not, we are the conduit to bridging our children with this
society. Even if one person out of 10 who ask, are asking to be nosy or rude, if we do not respond as an advocate, we make the assumption that all people who ask in that way are being nosy or rude. So, instead of “mind your own business” or “what’s it to you,” I try “I think what you meant to ask is that you notice that he can’t talk. This is his speech generating device, would you like to see how it works?” or “My child can understand everything you say and the way you asked that in front of him makes me uncomfortable. There is nothing wrong, but it seems like there is an aspect of his behavior you would like to know more about. He has autism and maybe one of us can tell you more.” Pollyanna much? Yes. But I believe it’s the only way we will truly build awareness.

On occasion, people want to ask how they can help. A lot of times people don’t realize we need help. And frankly, many of us have no idea what to say when you ask if you can help. Sometimes we feel our honest requests for help would be too much to ask of a family member or friend. And sometimes people just don’t want to do what you do need… so their perception becomes that you are are not taking their help when they offer up something unuseful. All can serve as barriers to asking the right questions… or giving the right answers for assistance.

People often make assumptions instead of asking at all. A young woman I know asked for advice in a situation about a member of her youth group. This teenager has autism and when the entire group is together she tends to get loud and runs out of the room.  This young woman sighed and said, “She only does it in big groups… attention… We are thinking of ways to let her know that maybe this group isn’t a good fit for her.” We discussed the fact that perhaps they were misreading the function of the girl’s behavior. She wondered aloud if they should contact the girl’s mother to try to figure it out. I wondered aloud what would happen if they just asked the girl herself, since she is her own expert. We cannot help but to look at others using our own lenses. But sometimes our lenses are smudged, rose colored or even broken. By not asking in this kind of situation, others assume they know what is best.

Let’s face it… it’s uncomfortable to ask about people who are different than we are. We may be curious, afraid of coming off as rude or have misread others cues. We may not want to know the answer; we may not want to change our own ways. We may already have assumptions and think we are right, we may be uncomfortable or frankly, some of us… we may just not care.

For those of us being asked, we may be offended, we may be hurt, we may not want to talk about it. We may not know the answer, we may not want to admit to an issue or call attention to it. We may not want to be reminded. We may not want to be rejected.

So, let’s all agree on something: asking and telling can be difficult.

Let’s move past it.

Families like mine… we are the awareness. How you choose to let that manifest is up to you. In my world, however, if you ask me, I promise to tell you.

Follow this journey on Running Through Water.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.