Sunday, November 20, 2005


Funny--I was reading on someone else's blog of their frustration at being a juggler, having so many balls in the air. This person does have a lot going on, but it's always odd to run head first into the assumption that a time will come life is calm, as though that is the status quo of life. Thunk! my forehead is bleeding.

For me it is the opposite: every once in a while the air clears and there is calm, briefly. It took me a long time to realize that the calm never lasts as long as I think it will, that calm is an aberration. I don't feel entitled to calm.

Entitlement: people commenting on products on the Apple website sure feel entitled to a level of performance from a $30 item that is a bit over the top. 'The armband looks like a bandaid' (couldn't you see that from the web images?); 'I am a small man and this armband looks gigantic on me--I look like my blood pressure is being taken at the doctor's office' (some other issues in play there); 'disappointed--all this remote does is skip ahead or back songs, turn it on and off, pause--a rip-off' (that's what the description said it did); and on and on it goes, the high-pitched yowling of the American consumer lost in the forest of products, yipping piteously, hoping to hear a friendly voice, hoping to find a way home . . . no--that's the Incredible Journey? Remember that novel aimed at 12-year-olds that always made the animal lovers among us burst into tears--the one about the 3 pets left behind while the family moves cross-country? . . . no, that's Toy Story, the movie about the 3 toys that manage to lose themselves while their owner merrily drives away . . .

Anyway, the definition of entitlement has become a bit stretched. Unless you really are entitled to something, and then people turn around and tell you, 'what, you think you're entitled to something?'

Robert's school is an inclusion school. That means that the classroom is supposed to be adapated to the child. After spending some time trying to figure out why Robert is not doing so well in school, starting to look into his classroom, his IEP, the way his teachers treat him, it turns out that my son is being warehoused by his elementary's school's Machiavellian use of the designation 'school/community-based'. Robert has to 'prove' that he can adapt to the classroom before he can move from a school/community based (i.e., hey, kid, you haven't got a real future, maybe the local supermarket will let you be a 'greeter' when you turn 16) designation to an academic designation. Talk about Catch-22. The threat of losing Robert's one-on-one aide has been held over our heads for the last 2 years, as kids who participate in 'full' Inclusion are not 'entitled' to aides--they have to prove they can adapt to the classroom.

Robert doesn't have a wheel-chair accessible desk; software programs, simple switch scanners, and adapted keyboards are not being used such that Robert can do his own classwork in a more independent manner; and after 3 years of effort, the county still hasn't figured out an appropriate communication system for him other than raising one hand for yes, the other for no. So my kid can't ask questions, must rely on someone holding a dry erase board at an angle that might be difficult for him to reach to point to an answer to a problem out of a pre-selected four, had to learn to do double-digit addition in his head because he couldn't use scratch paper or manipulatives (despite the fact that there are switch-accessible computer programs that would create virtual manipulatives for him). And when I pointed out that Robert had learned to do double-digit addition in his head, his special ed teacher poo-pooed it, saying, 'oh, we modeled things with manipulatives for Robert and we wrote out things on scrach paper for him.' My kid is sitting in a corner rubbing 2 sticks together while all the other kids have Bic lighters to start their educational fires.

The last time I got THIS angry it was at our then insurance company (CIGNA Healthcare--stay away, all of you, from that dishonest pile of garbage). Our case manager had gotten into verbal arguments with Robert's therapists that escalated into shouting matches, and had told his speech therapist that Robert 'didn't need to eat.' She had also been intentionally holding onto some of his therapy bills, not forwarding them for payment to the main insurer (and then the hospital was demanding payment from us), she was randomly, for the same course of treatment, requesting additional letters of medical necessity for some dates of treatment (say, 4 in a row), then making payment on another 3, while the previous 4 were being contested for payment and our family was being held financially responsible for them. She was trying to create a Kafka-esque web of unpaid bills that we couldn't really trace on our own, such that we were financially intimidated into continuing therapies for our son. I finally figured out what she was doing, found a sympathetic (or simply reasonable?) ear at the main insurance company, and straightened it out. She lost her job, but not before she tried calling my husband and demanding that he tell her employers that she had done a good job for us--this is the same woman who regularly reduced me to tears with her verbal abuse about our account and Robert's needs. We refused.

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