Wednesday, February 23, 2011


     A little while ago, B told me that she was the only invisible kid in her class. By this, she actually means, "invisible disability". She's not. Half the kids have a disability that is recognised, and likely there are a couple more that have a disability but no diagnosis. But she is the only kid in her class that constantly has to be with a worker, she can't even walk down the stairs by herself, and she is the only one that barely attends class, has a parent pick her up and drop her off everyday, and has a special computer. I'm sure it makes her feel very conspicuous.
     Even if I wasn't the type of mom who feels that she has to know all about her own health, so she'll learn to advocate for herself, or that thinks that she gets to have input into her care, or thinks that personal experiences of otherness need to be freely addressed, there is no way she would not understand that she is different than other kids. She has doctors and medication and different rules at home and at school. She is disabled, and she is very aware of that.
     But I don't like that if you ask B who she is, one of the first things, if not the first thing, she will say is disabled. She is so many other things. I am not ashamed of her being disabled, and I don't want her to be either, but I don't want her identity to be so closely reliant on what the perceived limitations of disability are. And yet, other than constantly reinforcing all the other things she is, beautiful, smart, kind, I don't know how to direct her away from the glaringly bright spectre of disability which inserts itself into every aspect of her life.
     A week or so ago she was reading a book on body language. Out of the blue, she turned to me and said, "Very few people want to be my friend," and I felt such sorrow for her. How does a kid that can't interact with peers in the ways they interact make friends? She can't go anywhere without the interfering presence of her mom or another adult. At school she is apart because of the attention and support she receives. She doesn't understand her peers, and cannot engage them at a preteen level, and she is wholly isolated by the fact that there simply exist no social groups of children like her. The groups for children with developmental disabilities always include children with behavioural issues, which she just can't cope with, or require an IQ under 70, and the groups for sensitive, anxious, shy kids are never able to accommodate her seizures. There are no seizure social groups, and having a seizure disorder does not usually include developmental problems. Everywhere she turns, she's the odd one out.

     And so she has adult friends, or little kid friends, which are nice friends but not the same. And as much as I am sure there MUST be other kids like her, finding a group that accommodates moderate delay AND a sensitive nature AND a chronic health problem has proven impossible for me up to this point. And my requests to the medical profession for assistance in contacting such families have met with no success.
     And so how do I help her see past her disabilities?


  1. Have you tried the Epilepsy Foundation in your area? They have pre-teen support groups. My mom was always after me to go to a meeting when I was younger. Maybe B could meet someone there.

  2. Here we have the BC Epilepsy Society, and they don't have anything. I've asked a few times. They have chat rooms, but B can't type well enough to join those freely.