Saturday, July 14, 2007
Autism blogging, part one
I have so much on my mind right now that the possibility for numerous rambling, self-referential posts looms large. So let me go by topics. I have noticed that I am more open in comments on other people's blogs than on my own about some of the realities of my life. Such as my son being on the mild end of the autism spectrum.
I don't talk or think much about this in my day to day life any more for a few reasons: I no longer drive for hours each week carting him to special therapies and interventions; I worry about the labels we give our children and how it limits us all to focus too much on the deficits; I am used to our routines and have (mostly) adjusted my expectations; and he is very high-functioning. Also, because explaining often doesn't seem worth the time it takes.
The short version is that he was diagnosed with Sensory Integration Dysfunction at age 4 after a series of weird tests which were required if he was to be allowed to stay in his hoity-toity pre-school (where we sent him hoping its calming atmosphere would allow him to blossom, whereas the very stimulating pre-school where he had been made him nuts). Turns out, we did everything they asked and they still kicked him out ("We're just not set up for a child with special needs like his") the day before we were to leave on a long vacation and just before public schools were getting ready to start. We hurriedly enrolled him in kindergarten, which turned out to be a wonderful thing.
SID can mean many things. It's kind of an umbrella diagnosis for kids demonstrating autism-like behaviors in some areas, but not in others. My guy is not Aspberger's syndrome, which is a little farther along the spectrum, but you may have heard of Aspberger's, which seems terribly common these days. (Many have noted the correspondence in the rise of autism spectrum disorders with the rise of a) vaccines and b) C-sections. I 'll not debate that here).
While on vacation I spent two nights with a friend who adopted three kids (siblings), all of whom turned out to have fetal alcohol syndrome, to greater or lesser degrees. She and I bonded back in those early days after the diagnosis when I was adjusting to the idea of being a mom of a "special needs" child. I remember a day when I took my son to a local indoor pool and he went into full-blown hysteria. There was absolutely no child psychology technique that could have calmed him down. I just had to do everything in my power to get him re-dressed and out of there. Later he begged me never to take him to the "talking pool" again. After my initial confusion, I realized that the loud echoing nature of the indoor pool had scared the bejeebers out of him. One of his areas of sensory dysfunction is around sound. He has extremely good hearing, with little to no capacity to distinguish between sounds or filter them. So he hears everything at once. This makes focusing on what a teacher is saying in a classroom full of squirmy boys and girls very difficult and showing up at a pool with loud splashing and squealing echoing around the room downright unbearable. But at the time of the pool incident it was this friend to whom I could confess, "Some days, I just want a normal child."
As is typical of autism spectrum children, mine is gifted in certain areas and absolutely obsessive about those things which interest him. It is beyond comprehension for him that other people are not endlessly fascinated with the machinations of elevators, for example. So we compromise. He got to choose the places we visited on our first two days in DC and they were the buildings with his favorite elevators. But for my side, we also got to enjoy other parts of the buildings, once there. So we rode elevators all over town: the Library of Congress, the Botanical Gardens, the Museum of Natural History, the parking garage in downtown Silver Spring and, his all time favorite elevator, the Old Post Office on Pennsylvania Avenue (in the photo). Other than the parking garage, all of them have pretty nice exhibits attached, as well. So it was a good trip for both of us.
Like with some of my own stuff (which can make my life hell, but also keeps it interesting), there are days when I still think, "I just want a normal child," but many more when I think how much of life has been opened up to me that I never would have noticed before if it weren't for this unique and wonderful and maddeningly obsessive little person with whom I get to share my life.