For the first few years that C had an IEP at school, I dreaded reading the goals – things like “needs to learn to pay attention” for a child with ADHD seemed, well, insulting. I kept using the analogy of a child with a visual impairment and would ask school staff “would you write on that child’s IEP that he/she needs to do a better job with sight reading?”. I know people got their backs up and were incredulous – afterall, how could I not agree that my son needed to pay attention? I’d like to think that a few people over the years have understood what I am trying to say – even if they couldn’t actually do anything about it.
I struggle day after day, particularly lately, with what is a part of my son that I need to accept (and advocate for others to accept) and what can be “worked on”. How do we find a happy medium where he is getting a clear message that he is loved, accepted and appreciated for WHO he is no matter what that entails? Isn’t that what we all want in life? I struggle with finding a balance between having healthy goals and objectives to work toward to set him up for success and allowing other people’s good intentions to slowly erode his self worth. When is it NOT “behaviour” (a term I really HATE now) but rather a symptom of the child’s disability? No one would dare to imply that a child with cerebral palsy is choosing not to walk or that a child with Rett’s syndrome is choosing not to uncurl their hands – and yet, it’s ok for people who surround my son to expect that he will exercise “good judgement” when it has been proven through appropriate testing that his brain lacks this intrinsic ability.