Sunday, October 21, 2007
A Clockwork Autism
Sometimes I think we live in two worlds. We have the nt world (neurotypical, non asd) and then we have the asd world, i.e., 'my peeps'. I think it's like a sub -culture complete with it's own language broken down into letters and acronyms. I remember reading the book 'A Clockwork Orange' and it had it's own dictionary in the back to explain what some of those crazy words were (I still remember 'oddy knockies' by the way). In the world of my peeps we have our most loved aba, with it's sd's,vi cv's, and fba's and the lovely meat acronymn (it has something to do with medical, environmental, and I cannot remember the rest). We even have abc charts, which might not be exclusive to aba. We have asd, hfa, as, and the most cherished pdd-nos. I personally love the nos, it's so vague yet so filled with hope. Then you have the realm of pt and ot and sometimes even st. If you are feeling adventurous there is a DAN! protocols with gfcf, clo, b12, dmg and it's brother tmg , as well as gse and ldn. They have oat tests (which have nothing whatsoever to do with oats). You might be considering tddmps (I might be wrong on those letters) or be using ala, or perhaps going the natural route with the ncd. You will be nervous for your upcoming cpse meeting and creating your iep , although these terms aren't limited to the autism community.
All snarkiness aside, I really do feel at home in my new found social subculture. When bubs was first dx, (love dx as an abbreviation, as well as rx and tx) we had early intervention at our home. Bubs got 19.5 hours of aba, and 30 minutes of ot two times a week. It was incredibly isolating. Basically you were imprisoned to your house and autism was the old ball and chain. Besides the fact that you basically are sitting home feeling sorry for yourself, your whole day revolves around accommodating a bevy of therapists and listening to their various and creative excuses of why they are going to be cancelling that day (uh, my dog has a hangnail, so I won't be coming). However, the thought of sending my little 2 year old bubs to a center based school for six hours a day was beyond my comprehension. After a very long year though, I changed my tune. Sending bubs to his school has really been a wonderful experience for all of us. He loves it, is doing amazingly well and I as a person (as well as a mom)have really gained a lot from him being there. We have a sense of belonging, of acceptance and the fact that everyone in his school was on the same journey. There is that instant camaraderie amongst the war torn - and although it doesn't necessarily mean meeting best friends galore (although in my case it has), sometimes the spark ignites and you find out you have much more in common with some people than just the asd. And sometimes other parents are just plain weird. But I am veering off course here. I guess my point would be is that as bubs grows, we find ourselves straddling these two worlds, one foot in each. Perhaps some would say the goal would be to leave our little comfortable spot and venture on down the nt side of town. We are in our last year at bubs' wonderful school so it will be interesting to see where we wind up.
Posted by Essential Amy at 9:21 AM