My preschool days with N were like nothing I could ever have imagined. My life had gone ridiculous on me. In a typical day, I had to do crazy things to help him cope. I would spin him (and me), and spend large amounts of time finding things that spin for him to watch, everywhere we had to be. My house was a disaster beyond my wildest nightmares from the lined-up items here there and everywhere, a mess that i could not just clean up (read related blog post to find out why). There were endless sprints from the laundry room or kitchen to the tv room to hit the “replay” button on the dvd player every three minutes, while trying to get a household chore half accomplished. And then there was dealing with the ongoing saga of toilet training failure. And also there was his aversion to wearing clothing, and dressing him and redressing him again and again. And there were my speech therapy exercises where I would get down to his level, on my hands and knees, and try to make eye contact with him, and go crazy with joy when it happened. I can still taste the soap of a million bubbles I blew in his face, while tediously repeating the word “bubbles”, with my most child-inviting voice, over and over, to get him to use the word to request them. Ugh! I remember thinking, if this keeps up I am going to go nutso.
I desperately needed to find another parent who could relate to this strange life I was experiencing. Maybe give me some tips for maintaining sanity. I cannot remember how it was that I came to find my first autism Parent Support Group. I eventually tried a few. Inevitably, however, most of the parents were complaining about problems of a higher functioning autistic child. It makes sense, because there are more higher functioning kids than ones like mine. It seemed that we were autistic among the autistic. I found myself feeling like we were somewhere off the charts completely, after attending parent support groups. It was not helpful, it was kind of depressing and further isolating, to tell the truth. Because I could not even relate to them. So what could I say? The last thing I want to do is deny anybody their feelings…”you think you have it bad? hear my story!”
So in my case the parent support groups did not benefit me much. I think that for low functioning kids the definition of community needs to be reexamined. Perhaps parent support groups for low functioning autism need to be formed by more than one region together (or be provincial). I would really have liked to know I was not alone back then. Eventually I did find other parents with similar issues, but it took many years to find my peers.