The System

January 11, 2011 at 6:53 pm Leave a comment

I had an IEP meeting for Gabe today. When we went to NIH last May the psychologist said he had a fine motor weakness. He did receive physical therapy as a baby and all of my boys are low tone. They take after me! I knew he was weak but blew it off. In October his whole nursery school class received an informal evaluation from an OT who said he needed it. So I referred him to the district. He had his evaluations in December. I was not thrilled with the OT eval but didn’t say anything because I really thought he would qualify. Plus his teacher and the psychologist agreed on how weak he is. Well at the meeting today he did not qualify for services because he is only 1.2 standard deviations below the norm and not 2.0 below. Ugh. I was so annoyed. It got pretty heated and the chairperson is not happy with me. I said I wanted to table the meeting, I was not in agreement, and wanted a re evaluation. I asked what my due process rights are as a parent and he said none because I didn’t sign anything, which I actually think is not correct.

What frustrates me is the system. There are always gray areas and this person just didn’t see it that way. Gabe has so much going on in his life why add another stress when he gets to kindergarten. Why not nip it in the bud now???  I wanted to say to this person that Gabe has high blood pressure, is anemic, is about to start growth hormones, pees in his pants a dozen times a day…. all related to his ARPKD and all out of my control. This fine motor weakness can be in all our control by just giving him OT. I did try to talk about the whole medical aspect but he kept referring back to the fact that it is not affecting him educationally/cognitively since he scored fine on those tests. So even though he has a fine motor weakness it isn’t adversely impacting him educationally.

I’m going to fight it but just need to figure out how! The system sucks. I totally lost it after the meeting because as usual it’s all of the little things together that add up and push me over the edge.

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