Two and half hours every day.  That is what we must accomplish here on the island.  My seven year old requires, like many Aspies with SPD, a great deal of work be done either with his cooperation or without it.  On the island, I have power…I can control the environment and there is a pretty good likelihood that he will be able to MAKE PROGRESS.  But the island isn’t really where it counts, is it?

Do you find yourself, when out in the world, thinking “if I were in charge, things would be DIFFERENT” thoughts all the time, wishing that they would just please not play pounding rock music at Taekwondo practice, wishing the choir director would PLEASE control the children and stop talking instead of rehearsing, wishing the lunchroom smelled more like food and less like, well, what IS that smell in elementary school cafeterias?  Do you wish that museums had quiet days, parks had parents who supervised their NT children like you have to supervise yours, babysitters who do not need to be paid hazard pay to safely allow you to do only NECESSARY things because you can’t afford adult recreation or free time?  I wish things like that constantly.

Then I come home to the island and we work some more.

Where we live, there is virtually no competent OT, so we must drive three hours one way to get to OT.  She is magnificent, has taught me what to take back to the island, what to buy, reduced our fees, commiserated about the mystifying ways of insurance (which alternately pays her or doesn’t based solely on the whim of the person who opens the mail, apparently), and has helped us MAKE PROGRESS.  But, da Creature and his pre-OT sister and I are still having to do the lion’s share of the hands-on work.

Do you remember when you had a life, a job, friends, a functional marriage, and thoughts about the future that did not end in “well, if he gets a little bit better at *blank*, then we can *blank*”?  We will wait until we have MADE ENOUGH PROGRESS.

Research brings us (the parents who must raise our autistic children in a virtual vacuum) more questions than answers, and once the experts reclassify the spectrum, many of us may lose access to services (which, at least here, are not worth the paper the IEP is printed on, and our advocate seems to think we are “lucky” so she has now closed our case since the IEP is “all fixed” now), and there is a general sense around me that if you want PROGRESS, you can’t wait for help to come from doctors or schools or community organizations, you have to help yourself.

So, on the island, the cost of PROGRESS is two and a half hours a day of direct conflict between da Creature, myself, and Asperger’s Syndrome/SPD (and whatever the heck genetic defect turned his pinkies in the shape of a sideways “v”).  In the world, which we MUST go into so we can regularly bombard him with all the unpleasantries of real life, the cost of PROGRESS is embarrassment, scorn, judgment, endless unwanted parenting advice, arguments with the occasional idiot black belt (wait…those are my costs…his are a whole other panoply of pain) and very little understanding, much less accommodation of what are real issues for my angel who tries SO hard.

The cost of progress?  Suffering.  The reward? Forward motion.  The goal? The island will be a distant memory because we were able finally to navigate the world.

Be Sociable, Share!

•