What Are My Goals for My Child?.....

Someone posted this question on the message board for our 1p36 support group. Its such a loaded question for me and I couldn't help myself in my response. It was so long, I thought it was worthy of posting

"I'm reluctant to share my dreams but what do I have to lose? Like my other children, I want Aaron to be the best that he can be. I don't know what that is right now but I'm trying to give him the best chance he has to get there. Dare I say I want him to have a job and live independently? I'm sure others think my goals are unrealistic but I'm not going to limit his potential just because some people have become experts in documenting what our kids CAN'T do. Knowing our kids' limitations and challenges is definitely important so that we can properly navigate our way to help them as much as possible. But at what point are the"experts" and "professionals" going to start studying and researching what therapies and programs address the "source" of our kids' problems and not just manage the symptoms? The source of our kids' problems don't just include missing genetic material. There are other issues. When is someone going to think outside of the box, like they did for Down Syndrome, and explore therapies our children will respond the best to, instead of throwing us a cookie cutter approach to their issues? When Down Syndrome was diagnosed early on, it was assumed these kids could not learn nor have productive independent lives.They went from being categorized as severe to profoundly delayed to moderate and even mildly delayed. Why? Because someone decided they had potential, taught them like everyone else, and if that meant starting a lot earlier than other kids and increasing the intensity of their intellectual curriculum, so be it. Down Syndrome going to college? Years ago it was "no way". Today its "yes way" but they had to take a different path than most. I have become Aaron's student in his first 15 months of life and I'm trying my best to apply what I have learned to his well being. My goals are sure to change as he grows and develops and I discover the path he will take. He is so young that my experience is very limited but that's just my two cents.Ronette (Aaron 15 months, 1p36 & IS)"

Why do I feel that I have to apologize for having dreams for Aaron? No one else apologizes for their neurotypical children. I guess its not having dreams per se but the types of dreams I have for him. Anyway just sharing my thoughts....