In a rare husband-wife moment (you know, those brief intervals between putting the kids to bed and doing the dishes before you can get yourself to bed), my hubby and I were talking about our son. Until recently, we have never used the word "disabled" to describe our sweet little boy. We've used terms such as "delayed" and "special needs". The word "disabled" evokes such negative images that we simply do not associate with our boy. But, the fact remains, disabled is what he is. At 3.5 years of age, he does not eat, he can not dress himself and he is unable to walk. These physical limitations most definitely impact the experiences of his day to day life, and ours as well.
This increased sensitivity to my son's physical challenges is most likely sparked by the ease with which my younger daughter is hitting her milestones. She started crawling last month; first a few tentative rocking movements, then full on reciprocal crawling within days. My son was almost 2 before he started to crawl. In watching her development, I better understand how my son's physical limitations have impacted his development. And, this makes me sad. He struggles. His body doesn't move with ease; he must make a conscious effort to turn his waist, or sit with his legs crossed in front of him, or out to the side. We are constantly reminding him, cueing him, to put his body in certain positions in order to facilitate overall body awareness and strength so that, one day, he will be able to walk. But, my daughter just does it. Her body naturally gets into these positions, and I am awed. I think "My, she's precocious."...but really, she's just typical. And that's when it became clear to me that my son is disabled.
And being able to say this actually makes it easier to accept him for who he is. It's really a flaw in my own thinking, I suppose. When I think of "delay", I think of something solveable, something that can be fixed. My son doesn't need fixing. But, he does need to learn how to live with his physical challenges in a way that allows him to participate fully in the world around him. Sure, he'll continue to get PT, OT and Speech, as well as feeding therapy (because, let's face it, eating is one of the great joys of life) so that he might lead a more typical life....but he will never be "typical". His traumatic start has guaranteed him a life full of "atypicalness".