A Long and Frustrating Process

Trevor had his testing for the school district today.  Because we live in such a tiny district they don’t actually do the testing themselves, but contract with our local EI center to do the testing.  This makes the transition process even more drawn out that usual.  Although his testing was done today, we don’t meet with the school district to get the results of the evaluation for another 3 weeks.  And so the waiting game continues…

Trevor did a great job throughout the evaluation.  He showed just how damn smart he is.  The evaluators remarked as they were doing the cognitive testing that they never get so far along in the book.  He was doing some 5 year old skills!  However, when it came to motor tasks he conversely showed just how behind he is in those areas.  He was so frustrated with the fine and gross motor tasks.  It breaks my heart to see him struggle like that.  Although we didn’t get the results as far as the school district goes, the EI team doing the eval did tell me whether or not he would qualify for continued EI services with his scores.  He continues to qualify in gross motor, fine motor, adaptive and social/emotional.  He doesn’t qualify in cognitive (which I knew he wouldn’t), but surprisingly he doesn’t qualify in communication either.  He has such scattered communication skills – he is obsessed with labeling and therefore has an amazing vocabulary, however he doesn’t communicate basic wants and needs (never says if he’s hungry, thirsty, tired, wet, needs to use the potty,etc.)  So even though he has some wonderful strengths in the language department (which of course I’m thrilled about, I love seeing his hard work pay off), he does still struggle with functional language and uses a lot of echolalia.  I was glad that the SLP told the school district rep that while Trevor’s scores don’t indicate a communication delay he does have communication issues and that they need to keep a close eye on this area.

I think the most frustrating part of this whole ordeal, even more frustrating than how long it takes to go through the entire evaluation and IEP process, is that the school district rep constantly reminds you that his delays have to affect his ability to access his education.  So even though his scores show he is globally delayed and needs help it’s not a guarantee he’ll get the help he needs.  And on the flip side there are areas (namely his significant sensory processing issues) that they don’t even look at during the evaluation.  And his sensory issues have a huge affect on his ability to access his education.  He would not be successful in a typical preschool classroom based solely off his sensory processing deficits, without even looking at his other delays.  I feel like all I ever do is fight for Trevor to get the help I know he needs.  The help the numerous doctors and therapists have told us he needs.  I am so tired of being an advocate for my son.  I really hope I’m over analyzing the situation and the rest of our transition process goes smoothly.  I hope that I don’t have to fight to get goals in his IEP, and that he is successful in the next part of his journey.

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2 thoughts on “A Long and Frustrating Process

  1. I enjoy reading your posts though I’ve never commented before. My son also has delays (mostly social at this point) and I have to agree with you that it is exhausting to keep fighting. I wish it wasn’t a battle to get what they need and that others were as willing as we are to give them help they need. Your son is gorgeous and you are doing a great job!

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