I’m realizing that when you are a parent, you not only have to live your own life, but you kind of feel like you have to live your child’s life, too. When Nat was a little guy, and all throughout his school years, I was never satisfied with the communication from teachers. It seemed that in the communication notebooks, I always read, “Great day,” or “Did all of his work.” Sometimes, during the more difficult phases (February and November, when he would become unhappiest and aggressive — can you blame him? They are the barfiest months of the year.) I would get “No issues.”<\/p>\n
I often devised little check-off sheets for the teachers, that took stock in what I wanted to know, such as, “who did Nat play with or talk to?” and “what book did Nat look at?” It was more work for the teachers to have to answer these questions daily, but I needed to know these things because Nat could not tell me himself. This little aid gave me a little more of what I was seeking, to be a fly on the wall of Nat’s school life, and I have to say that every single teacher not only used my little sheets, they were happy to. (To this day, I truly believe that people go into the service professions, like teaching, because they care about making a difference. That has been my experience, by and large, with 17 years of Nat in schools).<\/p>\n
And still, it was not enough. There was just more, more, more I wanted to know, but what, I can’t say. That inarticulable longing, the yearning of a lot of autism parents is as strong, or stronger, than any other emotion<\/span> they’re dealing with, I would bet.<\/p>\n One of the rare times that I was not happy with a school’s treatment of Nat was when he was around six. (and I am not <\/span>including in this recounting that terrible horrible year when he was ten, and expelled from a school program. That one, that “special education collaborative” does not even count as a school program. That one is off the charts terrible and as my grandma would have said: “a curse on all their heads.” I fart in their general direction. I salt their earth. Unfortunately most special needs parents have one of those wedged into their memories like an evil splinter. No, I am talking about all the other normal, hard-working, lovely staff we have ever worked with at all of Nat’s other school programs.<\/span>) But when Nat was around six, he developed his “silly talk,” or self-talk, and it completely freaked me out. What was this? I wondered. What were we supposed to do about it? Up until then, our only real problem with Nat was that he was utterly disengaged from us, for the most part, and very stimmy. His language had always been odd, developed from passages from books he loved. Charmingly odd. But the self-talk! That was not charming.<\/p>\n The school’s solution was to gently interrupt Nat and “give him something else to say.” This was one of the first times (of many) where suddenly the weight of Nat’s entire future crashed down onto my shoulders. Not like when they are babies and you know you are the one keeping them alive, basically. I mean that the message I got from the school was: if you don’t keep this up, he will be more autistic. One teacher even said to me, “however much more you can do for him now, he will be that much more capable later on. It’s your choice.” Or something like that. The way I heard this was that if I were to employ — around the clock — the techniques I had learned from the school, it would make Nat de-auticize (NancyBea’s<\/a> fantastically apt term). I was now to think of things for Nat to say — and constantly, because he was doing his self-talk constantly — as well as things I<\/span> wanted to say.<\/p>\n So here’s the formula: 1 autistic Natty + 1 mother (living her life+Natty’s) = 1 cured Natty.<\/p>\n But I am terrible at math. Over the years there would be many other such messages I would get, and I pretty much did them all, half-assed, tiredly, sadly. If I only had tried the diet a little longer, a little better. If I had only gotten him in the queue for Secretin. If I had driven that hour each way for the Auditory Integrated Therapy. If I had tried, just tried that drumming thing. If I had kept up the SI therapy. (If I had found a way to prevent him from attacking his therapists, he would have kept that one up.) If I had sat with him every single time another kid was around and facilitated appropriate play. If I had pushed the Floortime.<\/p>\n Instead, I worked tirelessly on finding him the very best teachers, on creating the most effective, comprehensive IEPs, on hiring tutors to work with him one-on-one in our home (based on Temple Grandin’s mother’s approach) so as to have someone in-his-face as much as possible, on finding him speech therapists who didn’t mind getting hit, on finding him the best medication combinations, the lowest dosages, that would mitigate aggression and relieve anxiety and stimulate speech. On taking him to this activity and that, trying every sport, every music therapist, blah blah blah.<\/p>\n