Friday, March 30, 2012

Not Without a Fight

I hate it when I worry myself silly about something that turns out to be nothing...but even more than that, I hate it when I worry myself silly about something that turns out to be something.
So this whole transition process just sucks. We are losing our much-loved Early Steps team, and moving into unfamiliar territory. And from the start, I've felt uneasy about this process....but I convinced myself that everyone feels this way. Then came the first transition meeting, complete with condescending remarks about my "expectations" for Maddie's therapy within the school system. After that a new concern emerged...What if she doesn't qualify for these services? Is it even possible?? Everyone told me not to worry about that...She has a diagnoses, she will most-definitely get the services she needs...Relax! So I tried. But I couldn't shake the uneasy feelings and worry.
So Maddie had her screening this week, and now I know my worries and concerns were totally valid. She rocked blew them outta the water, awesome. They couldn't get over her vocabulary and how logical her thought process was. She charmed everyone in that place, and I was proud. But the area I was most concerned with was the PT screening...which was really non-existent. There was a small stair-stepped bridge that they asked her to walk over...She said "I need some help", so the lady offered her one hand. Maddie says, " I need 2 hands to do it", so the lady takes both of her hands and helps her over it. That was it. The entire mobility portion of the screening was those steps, and she couldn't do it without help. So after all the exams were complete, I made my way to the desk for the paperwork, and was shocked to hear the same lady say, "We really don't even need to schedule a PT evaluation, because she has AFO's and gets around fine with those." Surely. not. I turned around to look, and said, "What do you mean, no PT evaluation?" They then explained to me that it was "highly unlikely" that Maddie would qualify for any PT services...Adaptive PE only. I was baffled. "How can you possibly form an IEP for a child with Spina Bifida, and NOT do a PT evaluation??!! It was on, and the claws were out. After some discussion (mostly tearful rambling on my part) they decided that since Maddie was already getting PT through Early Steps, it would be best to go ahead and do a PT evaluation just to "cover all their bases". Wow. All along, this has been my nightmare. We've been denied for everything under the sun because Maddie is just "not disabled enough". Please don't get me wrong....I am so completely grateful that she is doing so well. And yes, like many have told me, I understand this is a good problem to have. But it doesn't change the fact that when Earlysteps ends in June, so does all of Maddie's therapy that came with it. We are completely depending on the school system to pick up where they leave off...and now I'm not sure if they will. I hope and pray that if Adaptive PE is all she gets, then it is also all she needs. And I have to trust that this will all work out just fine...but for now, I'm worried.

1 comment:

  1. We just went round and round for Esther-Faith's new IEP. I found some great resources. Shoot me an email... KarinShireyHenn (at) gmail (dot) com.



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