March 6, 2011 at 9:22 am 1 comment

We had Gabe’s second IEP meeting and he still didn’t qualify. What kills me is that he cannot hold a crayon properly, still uses both hands, is extremely low tone, and tires easily. All of the therapists agree on this. He also had a psychological done last May at the NIH and then another one this December through my district and his scores went down. BUT…. his cognitive scores are average so the district says that even though he has these issues they are not affecting him cognitively or socially since the educational evaluation said his social skills are fine. What pisses me off is this is what I do for a living. I do these educational evaluations. You are with a child you have never met before for an hour maybe a little over an hour tops and you have to test their cognitive, language, social and emotional, adaptive, and motor skills. All of those in one hour. I think for me if I know a child is borderline then I am going to push for that child and make my report sound much worse than it is. I truly feel a child should not be hurt by the system because some scores are higher which ultimately skews the scores in the districts favor. I feel that no one was advocating for me or Gabe and the district chair was not the nicest person in the world. I kept saying how Gabe is always tired because of the ARPKD and how since he is so low tone he leans on me and the table. Meanwhile this chair has never even met Gabe and is just going on these reports and he kept saying well maybe he would benefit from the service but he does not have a big enough delay in his overall scores to qualify. One of the evaluators actually had the nerve to tell me I could get him services privately or through my insurance. That really pissed me off. Ummm…..hello…..do you know how much private OT services are? They could be 125-150 dollars for a 45 minute session. And I’m already having trouble paying all of my medical bills and I have insurance. Pretty decent insurance but with the economy my pretty decent insurance now has a huge deductible, large copays, and coinsurance, which means that after we pay our large deductibles and copays our insurance will only pay 90%. And that actually seems like a lot but Max and Gabe both had pulmonary function tests done recently. Any idea how much those cost? Close to $3000. So that was 250 dollars out of my pocket for both of those tests. So to say the least we are not going to be able to go the private route or the insurance route.

I feel the system has failed Gabe and I worry more than ever about him going to Kindergarten in September. Not only does he have this fine motor delay but he is often so tired throughout the day. Not to mention him wetting his pants. In a class of at least 20 I just hope he doesn’t get lost in the shuffle. Or worse I hope the teacher doesn’t get so frustrated with changing his pants all day that the rest of his issues get lost. I know I will advocate for him and I already have an appointment set up with the nurse to talk about all of this and am going to meet with the principal in May. But you know me…..worry, worry, worry. It should be my middle name.


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The Nerve Monday Memories

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March 2011
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