Dance Like No One is Watching…When a Disabled Teenager Comes of Age

The school van drove up into our driveway. Inside the van was Dear Son, his classmate Jen, his medical assistant and his teacher. They had stopped by to take pictures of each child in front of their home for a school project. I happened to see them and came out to the van.

Dear Son was sitting inside the van, slumped over in his wheelchair, in the far back of the van, near the rear window; his classmate sat in front of him. Jen was his favorite classmate for some time now, as they have attended school together for several years. A few years back, they rode the school bus together and used to flirt all the way home. Although Dear Son had no language, they would make faces at each other and laugh. His classmate, a darling young lady, has difficulty walking but can talk and walk, although pigeon toed.

On this particular day, sitting in the van, I saw Dear Son differently, not as my own Dear Son but as a disabled teenage man. Perhaps it was the image of the two of them inside, as opposed to a lot of other children on the bus. Nonetheless, it was different. Over the years, I made a point of never photographing Dear Son in his wheelchair, because I wanted people to see the person first and not his disability. Once he turned thirteen and got much larger, I had fewer options and will now take pictures of him in his wheelchair. Sitting in the van in the wheelchair, he looked disabled, an image that was almost startling to me. They opened the door, lowered the ramp and pushed Dear Son out of the van. They asked if they could take a picture of us, since I was standing there. I obliged. I asked if they wanted to come in however they had other pictures to take and were soon on their way.

So it was unusual when I received the e-mail from Dear Son’s teacher. The e-mail contained the photo of Dear Son and I, and along with it, a note from his teacher saying that Dear Son was having a great week in school and that they were working on dancing. The assignment was that the students had to ask one of their teachers to dance (they have a teacher and several aides in the classroom) and then the teachers would dance with them. She said that Dear Son was “always reluctant” to ask anyone (via his communication switch) however they continued to prompt him until he finally did it. Once they said yes, he enjoyed himself. She said they grabbed his hands and moved to the music.

The e-mail bothered me quite a bit. It was not like Dear Son to be reluctant to do anything in social situations. He is quite the extrovert, unlike both his mother and his father. I worried that perhaps Dear Son’s reluctance was because he felt bad about being disabled. Dear Son can be a bit unusual sometimes, in social situations. Many years ago, I took him to a restaurant for dinner and he refused to eat because he didn’t want anyone to see him being fed. He did the same thing at the park a few years back, when I bought him some ice cream. He refused to eat it in front of kids his age but gobbled it right down in the privacy of the back seat of our car, when we were out of view from the other kids.

When he went to bed last night, I had a conversation with him about dancing. I told him any girl would be lucky to dance with him. I said that I had a little secret to share with him. I said the girls are worried about not being picked to dance and boys worry about the girls saying no. I said any girl would be excited to be asked to dance with a handsome man and that they wouldn’t turn him down. I wasn’t sure if he believed me, but I tried to get him to feel better. This year at school, they are working hard with the kids and doing more “adult” things in the classroom, things that their peers would be doing. Dancing is one of them.

I spoke with his teacher this morning about my concerns. She had contacted me regarding an issue with our new feeding pump. She stated that she thought Dear Son felt bad that he was disabled; she reasoned that he felt the teachers would have expectations that he would dance on his feet and twirl them around and he couldn’t do any of that.

The fact of the matter is that Dear Son has been unable to weight bear for four years now. His torso falls to the side in his large wheelchair. His arms/hands have little or no functional movement. His large fingers look swollen more often than not and all of his fingers are double jointed. If you are not careful, you almost feel as if you could dislocate or break them right off. They have no tone. To make matters worse, none of his peers even look at him in the wheelchair when we are out on our walks.

His teacher went on to say that, when the teachers said yes and grabbed his hands, he seemed relieved that they understood he could not dance the same as the other kids, and that it was o.k. She said that, “once he holds the teacher’s hands and he starts dancing, he gets a great smile on his face and his hands start moving! He’ll pull them a little closer or moves their arms side to side…it’s really awesome!”

I’ve worked hard all his life to make Dear Son feel good about who is he. I think that good self esteem and good self worth are the best gift you can give a child. I am pleased that he is enjoying himself and hope that he continues to dance. It is my wish that whatever he does, he looks beyond his physical abilities/disabilities and be proud of who he is. There is a beautiful saying that starts like this…”May you sing like no one is listening, dance like no one is watching…” Maybe we should stop right there. Just “dance like no one is watching.”

Note: Dear Son is sixteen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.