http://www.myfoxdetroit.com/dpp/news/deena_centofanti/yes-kids-can-get-multiple-sclerosis-20110317-wpms
If you listen to the interview, this family went through so much to finally get a diagnosis for their daughter. I have seen their story on other websites and it has always struck a chord with me. Why does it have to be so difficult?
On the diagnosis front we haven't made any progress. In fact we are stalled until the Endocrinologist appointment in May and then to the Neurologist again in July. ARGHHHH - that is so far away!
On the school front - well currently we are holding our own. We had our meeting and it was agreed that the school would begin to send work home for her when she is away - why that was such a big hairy deal I have no idea, it used to be done automatically.
The educational resource teacher administered the Kaufman Test of Educational Achievement (KTEA)
The KTEA provides a individually administered measure of educational achievement for those aged 4 years 6 months – 25 years (comprehensive form) and 4 years 6 months – 90+ (brief form). The test can be used to identify an individual’s strengths and weaknesses in three key domains: maths, written language and oral language. It can also be used as part of a comprehensive psychological, psychoeducational or neuropsychological test battery which can enhance understanding of the individuals total functioning.
She performed exceptionally well (90-97th percentile) in everything except written language in which she was average. In their eyes, this meant that she was not having any trouble keeping up with her classmates and that she was handling all the absences very well. According to her teacher (who has greatly changed her tune since the parent teacher meeting we had) "she is so smart! I tell her what she has missed, review it quickly and over one recess she is all caught up!" We reminded them of our concern regarding her foundational studies and they brushed us off. I maintain that the main benefit of this test will be in using it as a benchmark and next year I will request that it is done again to see if she gets the same results.
Another win for us was finally getting them to agree to a rest period for Leah during her lunch time. This was a hard fought battle for us, that ultimately required a doctor's note and a great deal of stubbornness on my part. Ultimately what matters is she now has a place to lay down and take a rest while the rest of the school is out playing. Then when they all come in, she rejoins her class and they all eat lunch. We set her up with an amazing little folding cot, her prayer quilt, a little pillow and a tiny little sleep mask! It all folds up, wraps with a bungee cord and pops into a locker in under a minute. We practised at home. In case anyone is wondering, the cot is a complete and total thing of beauty! So easy to use, lightweight but sturdy, folds up small and totally portable, comes soft sided carrying case with a shoulder strap - just like the lawn chairs. Can be found at your local WalMart for $24.99 and comes in pink. There is also a version that comes with a little attached sleeping bag but I think you have to specially order that one.
Leah says she is sleeping during this rest period and she hasn't come home yet so <fingers crossed> it is working!
What we didn't get was and sort of educational help from an EA or an IEP. The EA issue we will re-address next year after another assessment is done. The IEP - I haven't given up that battle yet!
Leah came home today, a little quieter than normal, seemed a little sad. When I sat down and talked with her, she said it was because she hadn't done very well on a math quiz. She brought it to me - she had gotten 5/12 and 3/15 on double digit subtraction - a new skill this year. We talked about it, I kept it low key, I wasn't upset with her and decided that she should rewrite the questions that she got wrong and do them again for practice. A little while later I went in her room to check on how she was making out....I found her sitting at her desk sobbing. My heart just shattered! She was sobbing because she had no idea how to do the questions. We settled down in the kitchen with Bethany and between us, a pile of pennies and lots of fingers, we walked her through it. It definitely took longer 15 mins (length of recess) for her to understand it and I was livid by the end of it. THIS is exactly what I have been trying to avoid for her. This is the type of problem I have been warning the school of. Why is it so hard for them to understand and when did they stop caring?
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