Sending your child of to school for the first time is hard for any parent. Suddenly, they will be spending more time at school with their teachers and classmates than with you, and as a parent, you have to learn to let go when you are used to being the center of your child’s universe.
They will go to school that first day, and you will worry. You will worry about them fitting in, making friends, liking their teacher, keeping up with the rest of the class, being bullied, being fast enough, smart enough, good enough. When your child has special needs, these worries are compounded exponentially.
With a disabled child, you know he won’t fit in. He won’t be like everyone else. In fact, he won’t be like anyone else. Your child will not find that other child who is just like him because that child isn’t there. He will always be different, separate by the very nature of his disabilities.
When the other kids are in recess and gym, your child will be in physical therapy, or occupational therapy, or speech. When the other kids will get a pass and use the bathroom on their own, your child will need help having his diaper changed. While the other kids will walk down the hallways, your child will be pushed in his wheelchair.
While the other kids will interact independently, your child will have an adult with him at all times (something you are so thankful for, yet so wish he didn’t need). You know this means that your child will not have the same opportunities as his classmates to form bonds and that the bonds he forms are more likely to be with the adults who support him.
Year on year, while the other kids are moving forward, becoming more independent, growing into themselves, I know it is most likely that your child will be going backwards. In the case of my son Sam, his disease will progress and he will become more and more dependent on others. You worry that, as time passes, you will watch him getting further and further away from his peers. You fear most of all that your child will know that this is happening. You wish you could be there, holding his hand, protecting him through it all, but you can’t.
You hope that the kids at school will be kind enough not to tease him for wearing diapers, being in a wheelchair, or wearing a helmet, but you can’t be sure. You hope that his differences will make him special in a good way, that he will become known and loved for his differences.
You hope most of all that through all of this, your child is happy. You hope he loves school. You hope that like you, the kids and teachers at school will be able to look past the disabilities and see your child for the resilient, determined, kind, funny person that he is. The person who so desperately wants to fit in, make friends, and be something other than the kid in the wheelchair.