Bird on the Street

Passing

11:39 pm

One day in my comment section, several people discussed the difficulty they face having a child that is “secretly disabled.” I made that term up, but I’m talking about child and adults who who don’t have outward signs of their disability–or those whose outward signs aren’t obvious.

For the first three years of Charlie’s life, we lived as secretly disabled. We pushed him in a regular stroller, he eats by mouth, blonde curls cover the shunt in his head and clothes cover the scars on his body.

But there were questions. Charlie could “pass” for normal, but not perfectly. His eyes have nystagmus (shake), he slumps and has trouble sitting up straight. He looks sleepy. So there were questions–lots of questions–and comments: “He’s so sleepy!” “Somebody’s sleepy!” or “Is it nap time?” It was grating. I could lie and agree or say nothing at all. I never corrected people–to do so would be uncomfortable–so I let it go, the whole time feeling like a liar and a fraud. That’s a lot to handle when you just ran to the store for some peanut butter.

For school, we ordered Charlie’s wheelchair. I take him to school in it and it’s his main mode of transportation when he’s there. Sometime we use it in restaurants or to go for a walk around the neighborhood.

With the wheelchair, we are out. No one asks if he’s sleepy. There’s no confusion if he doesn’t respond to a greeting or question. The world sees him as he is–disabled. The chair doesn’t change Charlie’s abilities. It doesn’t make him different in any way. But I love it (except for how much it weighs–I don’t love that). I love not having to explain or excuse ourselves. I love just being rather than faking something that we’re not.

I wonder about the people who don’t have wheelchairs, though. People who don’t have an option. People standing on the edges of who they really are because honesty and openness would make people uncomfortable. I wonder how many of them are out there and are they grateful they can “pass?” Or do they wish for their own version of the yellow wheelchair?

Kid playing

Filed Underother stuff

Compare and Contrast

1:04 am

I spend a lot of time making decisions about Charlie’s care. I worry about his doctor’s appointments, therapy goals, his medication list, and even more basic things like if he’s watching too much TV or eating too many processed starches.

When I makes these decisions, I always feel confident–I can list the pros and cons, the cost, the potential rewards versus the potential risks. I feel and sound completely competent.

and then I see someone else’s child do something that mine cannot–walk, talk, read, solve quadratic equations (kidding!), whatever. Really, it doesn’t even matter what the accomplishment is. I get upset.

Have I done the right thing? Am I doing the right things? I question my decisions and there’s just no way to compare my child to another. Cerebral Palsy is such a vague, uncertain term that means very little. I do know that no one has ever looked at Charlie’s brain without being shocked by how bad it looks. I know that I should be happy with all that he can do–that he smiles at me and loves my company, that he can master any DVD player, and that he’s finally beginning to understand social conventions such as eye contact and smiles. I AM happy, but I still question my choices and wonder if I could be doing more.

Will this this feeling ever go away? Will I ever feel satisfied with the decisions I’ve made?

I don’t know. child playing a game

Filed Underconfessions

Fitting In

11:31 am

Yesterday when I picked Charlie up from school (success, by the way), his teachers eagerly recounted a story from earlier in the day. During outside time, they sat Charlie down in his little chair and his teacher began to sing to him since he’s such a music lover. Before she knew it, a crowd of Preschool girls had formed around them with each little one begging to be the next one to sing to Charlie. All of them delighting in his smile and begging to take a turn. The teachers said he was just mobbed. I had hoped that school would teach Charlie that he’s not the center of the Universe. That might not be possible.

After school we swung by our small local grocery where the owner compliments him on how well he’s sitting up in the cart these days and the manager shouts “Charlie” trying to get Charlie to turn around. When it’s time for me to leave, that same manager rushes to grab my bags and take them out to the car because he knows I’ll have to wrestle Charlie’s uncooperative legs out of the cart.

Later in the evening I approached my first PTA meeting with utter trepidation. My husband did not want to attend (he preferred napping on the couch) and so I went alone. I took an empty seat next to a young mom and sat there debating whether or not to strike up a conversation. I knew that if I asked her a question about her child, then I would have to answer questions about mine and inevitably I would have to explain at least a bit about Charlie’s situation. I’m not embarrassed or ashamed of Charlie, but I wasn’t sure how she’d react. Some people just start ignoring you once they realize that you’re not going to be able to compare art projects and height and weight percentiles. Don’t they realize that if they became friends with me, they could win every time for enternity? People should be fighting to hang out with me.

I finally did strike up a conversation (who am I kidding? I can’t shut up) and to my delight, when I told her my son was in Early Intervention Preschool she smiled and told me that she’d heard nothing but good things about the program. She asked if I like the teachers and if Charlie was enjoying school. I couldn’t have asked for a better response.

I don’t know what I envisioned for Charlie in his school and in the larger community. Some people have big ideals to be fulfilled with respect to their special needs child. I am not one of those people. I am content in the now. I’m sure that to some this post will seem strange since the last one was basically a complaint about someone in my community. It’s not perfect, but no place is perfect, and I believe that one negative comment cannot outweigh the many, many good things that I have seen and experienced. We are a part of of things, we are fitting in and finding our place, and for now, that is enough.