Sunday, November 18, 2007

Ramblings

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I signed up to be a parent member for my school districts cpse/cse meetings. I have to admit, part of the reason (most of the reason) I volunteered to sit in on those meetings was purely selfish. I want to learn all I can about the wheeling's and dealings of the committee on special education. I want to learn how the laws work, how they don't, how they manipulate the law, and probably most importantly, what kinds of services are available. I am a very nosy person as well. I have to say, even after sitting in on an orientation program for the parent members, I am not entirely sure what my role is. I sat in on my first 4 meetings last week. Two of the meetings were fairly benign, I don't know if I am 'allowed' to talk about the particulars (kind of like jury duty?) but suffice it to say, no major issues going on with the kids. The other two were a little more dubious. One of the kids was in the wrong placement. He was most certainly (in my opinion) not getting the right services and he had a dx. After the mom left I asked the school psychologist why he was not placed somewhere more appropriate (and better in my opinion) and she said in a kind of crunchy, sappy, somewhat condescending tone that it was kind of a touchy subject with the parent, and the parent wasn't ready to hear certain things about her child and there wasn't enough time to get a proper placement, blah blah and more blah. I said that no one ever thought to spare my feelings in our early days of autism. I realized then and there that no matter how much I hated hearing those words and actually hated the people telling me those words (just because those words were coming out of their mouths) that I should count my lucky ass stars that they didn't care about hurting my feelings. Yeah, it was hard, and it was a heartbreaking painful experience to go through, but it really got us to act, and it got us lots of services. No one minced words when it came to Bubs and I really think it was a form of tough love for us. I look at where my Bubs is now, and I shudder to think where we would be if the powers that be (early intervention) were scared of making me cry. Incomprehensible.

In the second meeting where the red flags were flying loud and proud, the child appeared on paper (and I say this because I have never met the child, I just heard the reports) to have asd, borderline cars score, speech delay, flapping, echolalia, and the list goes on and the child only got one hour of service per week. The said child scored higher on the cars then my son and by description really sounded like a child with asd. One freakin hour of service. The parents were just thrilled that the child didn't have an asd dx. The older wiser me couldn't figure out why they wouldn't persue it, if anything for more help for their kid. Looking back, in the beginning of this journey, I would have paid someone large sums of money to tell me bubs was just fine, don't worry, it's just a speech delay. As time progressed, I wouldn't have believed someone if they told me that. Now, I don't care what you call it, I look at Bubs for the sweet joyful, amazing kid he is, and I can rest easy knowing that I moved heaven and earth to help him be the best Bubs he could be.
Basically as parent member, I wanted to reach across the table, give those poor parents a hug first, then a shake, and tell them to just forget about the label. At this point, the label is your friend, the label will get you help!!!! The proverbial window is open right now, get in there while you can! An hour a week, that's total bullshit. I felt like such a jerk and somewhat lacking in integrity (and/or a pair of balls) sitting there being quiet. But I wasn't too sure it was 'within my boundaries' to start preaching hellfire and brimstone.
I am rambling here, it's Sunday night, I am a little fried from my action packed weekend.

5 comments:

Drama Mama said...

The DX is a friend in the early stages, I agree.

It's biting us in the ass now, as our daughter transitions off the spectrum.

It's really great that you are serving on the board.

Keep us posted, will you?

Cyndi said...

You've been tagged. You're supposed to write 8 interesting or random things about yourself, and then ask 8 other bloggers to do the same. Have fun! :o)

bonbon momma said...

Drama,
I totally hear you on the 'biting in the ass' part. I worry next year when bubs is in kindergarten that teachers will write off some of his behaviors as 'typical of children on the spectrum' instead of just adressing him as a person. I don't want anyone underestimating him or using the dx to keep him back. I wouldn't be surprised if they take away is dx somewhere around third grade and replace it with adhd. It's tricky but it really was a necessary evil in our case.

bonbon momma said...

cyndi,
oh boy! I don't even know if I know eight bloggers,lol.

M said...

That's so unfortunate that the parents are satisfied with 1 hour given that there's no asd diagnosis. I would scream if Liam only got an hour a week (I'd like to scream that he only gets 4 hours a week but right now it's baby steps). Denial is a horrid thing. I hope they realize dx or no dx it's obvious there are serious problems than an hour will not address. Too bad.