Have any of you been in contact with the Institute for the Achievement of Human Potential? A person can request a free copy of a very short DVD that has the stories of three children who have the same kinds of challenges that you all talk about in this forum. It's a super DVD. So far, I have only worked with one special needs child, but I was able to show the mother this DVD last week, and I think it might have helped her see him in a new light. My goal is to work with more special needs children and their families, but I want to do really well with this one, first. Good luck, all of you, with everything, and if anyone has any advice for me, I would appreciate it, because I am new and just starting out. But I'm so impressed with these kids and their families!
Oh, P.S. The one that I'm working with, a boy who's just turning seven, can't talk or walk, and he's on a feeding tube. He can't sit up for very long without slumping over, and he doesn't really like tummy time. But on his stomach, he can lift his head, and now he moves his arms and hands and legs more (a goal of the occupational therapist), and he likes to have little tastes of soft things while he's on the feeding tube, just as if it's a regular meal. He communicates, but his family is so afraid to hope, that they're in denial, so unless it's a really clear thing, they just think it must be a random motion. His eyes don't track together very well, but he likes to play games that make him follow something with his eyes from place to place. On the plus side, his hearing is very sharp, but it's hard for him to get anyone's attention off of him long enough for him to alert them that someone's at the door. Usually the dog barks first, but my goal is to be able to understand him well enough to be able to say, oh, thanks, is someone at the door? before the dog even notices. :) That's how sharp his hearing is. He has Cockayne's syndrome, and my lifelong goal, now, is to find a way to work with other children of the following four rare genetic disorders: CFC, Cockayne's, Costello syndrome, and Noonan's syndrome. Thanks for listening, and good luck with all of your families and children!