This weekend I had the great pleasure of listening to a woman named Kathie Snow speak at a Convention for parents whose children have disabilities. Of all of the speakers we’ve listened to, and we’ve listened to a lot of them, her words will make the most impact on our lives, and that’s saying a lot. I mean, the other people gave us plenty of ideas about resources we can use in our home, how to access them, and now we will get to things that will change our lives (his life) for the better. The conference itself has allowed us to speak to other parents going through the same struggles we’ve gone through and hear their words of wisdom. But, Kathie raised a son with Cerebral Palsy and raised him just like any other child because, well, why wouldn’t she? And yes, raising our son means we have to supply some adaptive technology, teach him skills, and realize his limitations. It does not mean that he deserves to spend time away from his peers or that we should expect him to do less. Make no mistake, I’ve always said my son had more intelligence than he could ever communicate out loud. I knew that. But, I gave him less credit than he deserves.
But, how, if I realized he had intelligence that we had yet to unlock, did I fail to give him credit? Well, gave him less credit than he deserved by putting him in a life skills classroom instead of finding other ways to handle his behavior. I gave him less credit than he deserved by failing to give him responsibilities–real responsibilities–in the house. I gave him less credit than he deserved every time I talked about him in front of him, which ended a long, long time ago, but it did happen for a brief stint in his life and I still regret it because lack of articulation does not mean lack of ability to comprehend what we say. I gave him less credit than he deserved every single time I questioned his ability to do something for himself before allowing him the opportunity to try.
The biggest thing our son has missed that he needs, especially now that he’s older, is the feeling of self-determination. We do too much for him. We direct his entire life. We attempted to institute a chore system, but we failed by not making it consistent enough. When he started to destroy his room and the toys in his room by throwing fits in his room, we removed all of his toys from his room to protect the walls and his toys. The problem? When does he learn that it’s not okay to do that? When do we teach him responsibility and, therefore, raise his self-esteem? He could earn an allowance and then pay for any destruction, if necessary, but we never even thought about that. I guess, in our defense, we in the thick off all of it and couldn’t see our way out of it. We did what we felt would preserve our sanity and protect him. We made his room a safe place. Now it’s time to evolve, teach him responsibility, and let him actually be a 7 year old boy.
He deserves for us to treat him like his chronological age, not his developmental age. And as his parents, and his strongest advocates, this will also be something we must advise the school to do for him as well. If that requires assistive technology, then so be it. He will try, he will learn that it’s okay to fail, and we will support him 100%. In order for him to learn any of that, he has to first be granted the opportunity to try, and every child deserves that. It is, in fact, our moral obligation to give them that.