A lot of raising Charlie has been speculation. In the beginning I speculated about how disabled he would be–how the damage to his brain would effect his body. Now that he’s older, I speculate about what he’ll be able to accomplish and even what’s bothering him when he cries. I also speculated a lot about what to tell people who are curious about Charlie’s disability. Adults I’m fine with, but I never knew exactly what I would say the day a child asked me why Charlie doesn’t walk or talk like everyone else.

Well, Saturday I got my first go at it.

I should back up a bit and explain that my husband discusses Charlie’s disabilities on a need-to-know basis only. He might say, “my kid has issues,” but he neither invites nor encourages open dialogue. Actually, he’s that way about everything, but I find that it’s awkward with regards to Charlie because we end up at parties where people are asking him why he won’t go run around with the other kids. Gah.

So Saturday we go to a party at the boss’s house. There were at least thirty children there–mostly ranging in age from three to nine–running this way and that in their crazy costumes

An executive decision was made by my husband to just show up in the wheelchair. From his perspective, it would save a lot of conversations–hi, we’re in a wheelchair, we’re disabled, please don’t expect me to run anywhere any time soon.

I’ve pushed Charlie a lot of places–stores, restaurants, malls, schools–none of this quite prepared me for the frenzy of bringing his bright yellow wheelchair into a crowd of over-stimulated grade-schoolers. The buzz was audible as we made our way across the yard. In particular, two tall, leggy nine-year-old girls headed straight towards the chair as if magnetized–one shouting loudly to the other, “what’s wrong with him?”

Whoa.

Crazy Hair Day at School

I felt myself bristle like a cat when I heard that one. Let me tell you something–any of you who read this and don’t have a kid with special needs–I honestly do not think that there is anything “wrong” with Charlie. I’m not telling you that to make you feel better, and if you pressed me, I would, of course, admit that he has several ongoing medical issues, but wrong? No. He is exactly as he should be. Really. I view these things as facets of him and not as things to be “fixed.” Like a kid with crooked teeth or allergies, I am aware of and monitor his issues, but I truly do not see them as defects–they are just part of who he is.

Anyway, I, of course, did not clobber said nine-year-old, but then her friend approached me. She was the daughter of one of Hubby’s co-workers, a sweet girl with a big heart, and she asked me “Is that your son?” and then, “umm. . .is he. . ummm. ?”

That’s when teacher mode kicked in. I prompted her, “are you asking about his disability?”

“yes”

“he has cerebral palsy.”

“Oh. What’s that?”

“He was very sick at birth and now his legs don’t always do what he wants them to do. His arms work pretty good, though. He can’t talk either.”

“Oh. OK. I’m sorry.”

“Don’t be. Really.”

I probably could have handled it better and I’m sure I could have handled it worse. It wasn’t a perfect answer, but it was good enough for the moment. If I’d been better prepared, I probably would have taken a moment to explain to her that you don’t need to tell someone that you’re sorry and maybe suggested a better response.

Children are, by nature, socially awkward–they haven’t had every lesson seared into their brains just yet. No time like the present to start teaching them about disabilities, getting them familiar with the language that surrounds them, and letting them know it’s OK to ask about strengths and weaknesses. Is it hard to deal with the bluntness of children sometimes? Absolutely, but I taught teens and pre-teens for years, so I know that their question don’t come from a place of malice–they come from curiosity. I’d rather them ask  questions and be interested than have them taught to look the other way when they see someone who is disabled–even if it is a little hard on my heart.

Few people sign up willingly to the parents of the disabled. For many of us, raising a child with disabilities is trial by fire with us figuring things out as we go along.  I’m not great at this stuff, but I’m working at it and just hoping I don’t mess up too badly in the process.

How do you handle it?