(P.S. I have no idea why blogger is doing this horrific white thing to the text, I can't get rid of it, sorry.)
Today was Calvin's CSE meeting where we meet with the committee for special education to map out his program for this summer and the following school year. And it went exactly right, just like last year. Excellent team working with Calvin in a setting that could have been designed with him in mind, providing all the services he needs. And if there are services we don't know to ask for, his teacher and therapists do. And not only do they provide all that at school, they help Mike and I learn to extend it into the rest of our lives as well. What a concept. That's what you get at the Orange/Ulster BOCES STRIVE program. And as an extra bonus, you walk out with the same number of gray hairs you walked in with, and you don't need to start popping blood pressure pills like Tic Tacs.
I feel blessed and thankful beyond reason.
And I really mean beyond reason, and maybe against all odds, because all of the above being said, the fact that I know so many families that are suffering and struggling and fighting tooth and nail for their kids' even most basic educational needs makes me seethe with a rage I can't describe to you without starting to cry. I was warned, if your son needs BOCES, if he needs that restrictive environment, get him in there from the start or you're screwed. This was the warning I received from the parents who'd gone before and bought the load of crap about how appropriate the mainstream school setting would be for their child and are now suffering the consequences. I owe each and every one of these families a debt of gratitude I can never even begin to repay.
All this isn't just wrong, or sad, or tragic. It's criminal. And it quite literally breaks the law, although that doesn't seem to matter much, even for parents who try and use the courts to fight for their legal rights. They don't win. They spend their life savings and they still don't win. An old family saying comes in handy here: IDEA law? That and a piece of toilet paper and you can wipe your ass with it.
I know that in each of their cases it's nothing but money and politics at fault. That's all. Which makes it so much worse that it makes me feel like I'm choking and can't get air. I can't breathe, and these are "other people's children." Yes, there are excellent programs. Excellent professionals. Appropriate settings. All available, all a reasonable bus ride away...all dangled in front of parents who spend their lives researching and finding these programs but who cannot get to access them. Not without selling their homes, and an internal organ or two. It feels like spite. But don't take it personally. It's just politics.
And you wanna know the best part? Here's the best part, my favorite effing part of all. As the autism epidemic soars, and nothing continues to be done about it, eventually it won't be some piddly margin of children that will need special education. It'll be almost all of them. And as for educators, instead of having to worry about losing their jobs because of standardized test scores--a reality so stupid it's hard to believe anyone coming up with it has an IQ any higher than that of a can of soup--they'll be retraining so that they can teach their students how to walk, talk, use a spoon and fork, follow one-step directions, use the toilet, and survive a medical check-up or a haircut without withstanding feelings of horror so bad that the rest of us are lucky we don't have to go through it and instead just get to look on helplessly.
Yep, maybe when we come to this inevitable state of things--with no end in sight with regard to the systematic poisoning of tiny babies' brains so that people who are already millionaires and billionaires can profit some more--maybe, just maybe, the necessary services will start being made available to all those who need them. And kids without disabilities will be so much in the minority, nobody will know what to do with them.
So yeah, that's all coming, but in the meantime, rage and grief and endless endless heartache for family after family.
This note is public, so don't feel shy about sharing. All I know how to do is write. I don't know how to make the people who are responsible for this hideous damage stop doing what they are doing. But the more people who get pissed off about this the bigger the march on the White House Lawn will eventually be. And maybe that'll help.
Something has GOT to help.
(This is Cal with his phenomenal teacher...I'm spying from the sensory tent so as to observe oh so stealthily)
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