The Clothes Make the Man

I was driving around the block, in this new neighborhood, waiting to meet a friend when I came upon the stop sign. To my right, was the new high school. It was several stories high, all brick, and quite imposing. What I noticed most were all the steps to get in. The kids were all walking towards the school since it would be starting soon. It was a cool fall day and the boys were dressed mostly in jeans and short sleeved t-shirts or jeans a sweat jacket of some sort, unzipped and open. Many did not have on closed toe shoes. The girls were dressed similarly only the jeans were tighter and the t-shirts were smaller. They too, had a thin jacket, unzipped and open. The temperature was less than thirty degrees on this day. I thought about the clothes that I dressed Dear Son in today, a heavy fall jacket, long sleeve shirt and sweat pants. I looked around and couldn’t find any of the teenagers, dressed this warm.

I was taking in everything I could, as I slowly drove down the street. I was thankful I was in a school zone so I could absorb all of their actions. This was after all, the high school in our district, the one he should have gone to. I say should, because they denied his admission, even within the Special Education Cooperative, since they did not have the facilities to care for him. What they really meant was that he was too “disabled” for their school. Secretly, I was happy. I had been afraid to send him here, because none of the kids in his classroom would be here, nor any of his aides, nor any of the teachers that knew him. Heck, even the bus company changed. There would be no one that would know anything about Dear Son.

You can’t imagine how that would be. Some of the kids in his classroom could at least speak, and they could have provided some information about him but with no one, I worried about what might happen. Even with a new aide, you always wonder if they will be good to him and also if the school kids would be good. Most often, they just ignore these kids.

I was curious especially about their clothes. One of the advantages of special needs children, is that you can buy them whatever you like, at least if they can’t speak or express their wants or needs. With Dear Son, I could buy whatever I liked and did. I never had to worry about what the trends were at school and usually, he was one of the best dressed. He still fit in of course, but he looked great. I had a rule though, from the very beginning. I made sure never to buy any sweat pants of any kind. That was what disabled people wore and I certainly didn’t want him to “look” disabled. I returned every gift that he ever got, that included sweat pants. I was never ashamed of Dear Son but I loved to dress him well to not only celebrate him but also as a reminder that someone was at home who cared about him and that I was paying attention. Paying attention, meaning, if they were going to mess with him, I was going to find out and then they would have to deal with me. That’s always the fear of the parent of a disabled child, that someone will mess with them.

Dear Son is almost fifteen now and the past year or so hasn’t been kind to him. Not only has he gone through puberty and put on some weight with one of his meds, he can’t move much. This makes dressing particularly problematic since he can’t seem to help at all. I have had some training by the occupational therapists, but it’s still pretty difficult. It was this past year, that I finally broke down and purchased some elastic waist sweat pants. He has other pants certainly, some jeans and some khakis, however the easiest ones to put on and off are the sweat pants. I have to roll him from side to side to get on his pants and it’s nearly impossible to lift his hips off the bed to put on his pants. If I am trying to put on jeans or khakis, by the time I get them up on him, the zipper may be crooked and it’s hard to line everything up, which is where the sweat pants come in. Also, since he’s still in diapers, this is a major issue.

This clothing issue, is why I was so fascinated to watch the other teenagers walking to high school. Did Dear Son fit in anymore? How would he be perceived if he were “normal”? Not a fair statement at all since if he were normal, then he’d be wearing more fitted jeans, in different washes, like the ones that hang in his closet, but that he never wears. He’d also be dressing himself, buying some of his own clothes and certainly wouldn’t need any “extra” room in his jeans for his diaper or for his leg braces. It’s pretty hard at fifteen to buy jeans for him, since most of them are fitted, and don’t allow extra room for these things.

The clothing issue, is what prompted an e-mail from a friend of mine in another state. Her daughter is severely mentally and physically disabled and is extremely small for her age. She is eleven and size of a five year old. She participates in an online group and came across a message post one day where someone randomly asked why all disabled people were dressed like babies. She was crushed. They weren’t asking her, mind you, just asking a general question. She was in tears. She had just purchased a Disney t-shirt that she thought her daughter would love but after seeing the post, refused to dress her in it, because it might appear too “babyish”. Her daughter, wears a full body brace and requires elastic pants. She also wears a onesie cotton t-shirt with snaps, under her brace, to make it more comfortable, when she sweats. She e-mailed me to get my thoughts on this matter.

I find it ironic that mothers of disabled children worry so much about their clothing. We just want our kids to fit in and to be kids. It’s ironic because in Dear Son’s case, many of his high school peers wear pull on nylon sweat pants, and they aren’t disabled. Many normal girls also wear yoga pants so to dress them in pull up elastic pants, isn’t so horrible. I doubt normal teenagers worry they look disabled in sweat pants. Maybe we shouldn’t care so much either.

I thought about this as I dressed him for school today. In a defiant mood, I took his Lucky Brand jeans out of the closet and put them on. After several minutes, they were up. I reached in for the zipper to pull it up and there was the hang tag sewn next to the zipper. It said, “Lucky You”.

*Photo was taken in August of 2005 at age 13.5 years old. This is my favorite picture of Dear Son and is the last photo I have of him, where he was able to sit up straight, even if only briefly.