i'm glad to have found this thread. i've read everything, and want to read it over and over again carefully. it's a wealth of experience and knowledge. plus, a lot of the time, i just find knowing other people are in a similar place, and have had to fend off the same sorts of comments from well-meaning friends who want to try and help, without realizing there is no way they can understand without first walking a mile in your shoes and really, really knowing what it's like to spend 24/7 dealing constantly with the special issues in your life, to say nothing of the ongoing worry of medical, long term care, and support issues.
but i have good news too
my godson, who will be 13 in a month has asperger's. he is my best friend's child. ironically, my second son, who is a year younger, has something called the digeorge anomally. it's a genetic problem with lots of different components. one of teddy's problems is called non-verbal learning disorder and it is a severe problem, but not a common one, or even one that experienced educators and medical professionals are aware with. i say ironic, because non-verbal learning disorder (nvld) has some similarities to asperger's, although nvld kids do not share the genius qualities of asperger's kids, and are sometimes borderline retarded.
my godson is doing so well! although he has his quirks, in many ways, he is just a normal, gawky, teenage boy. after doing summer football workouts, he told me yesterday he'd decided against football b/c he didn't feel any "passion" for it. i've spent so many years watching and worrying and it is such an enormous blessing to watch him unfold into a beautiful, sensitive if slightly reclusive, young man.
my son is also a beautiful, wonderful child, but the issues with him are more pressing and constant. just getting her registered for another school year (something i just finished this morning) is an ordeal. explaining to teachers, doing enough shtick to get them on your side and willing to help with special needs, and on and on. it can be overwhelming and it was until he was in fourth grade. although his medical stuff had to be dealt with, my dh and mil stayed in denial on the mental/emotional stuff, until i finally researched and shopped aroound and found some specialists in this area. the diagnosis was obvious and they made it--he scored on all of the indicators for nvld.
having a diagnosis makes it easier in the sense that dh and i can remind ourselves some of the problems are neither his nor our fault, and that we just have to stay on the same team and all work through them. but the well-intentioned comments, or in all honesty, sometimes mean, spiteful jabs from people who are uncomfortable with kids who are "different" can be so difficult to deal with. i sometimes wish we could just be isolated in our own space, but then i remember teddy is going to have to function is this world full of people who can be cruel (he has some pretty incredibly little scars on his tiny body from repeat surgery, including a "zipper that goes virtually all away around his body at the chest line, and is bissected by two vertical scars from other heart surgery) or just indifferent. so we try to help equip him with the skills to deal with that--i guess a good, healthy sense of humor being among them.
i'm sorry to ramble
i really just wanted to say hi, and let y'all know how much i feel like i learned from reading all the posts here.