Name: margalit
Location: Massachusetts, United States Professional writer, educational advocate, opinionated ultra liberal mother of 18 year old twins, living life in the slow lane due to hypertrophic cardiomyopathy, congestive heart failure, and diabetes.

email: margalitc at yahoo dot com

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Monday, June 02, 2008

Going through the years of paperwork

In preparation for the Girl's latest IEP meeting on Friday, for which I need huge vibes, I've been sorting through all her paperwork since kindergarten. I figured preschool records were a big over the top, right?

It's so strange. She's been tested time and time again, and every single time she does miserably at the same few subtests and well above average on other subtests. Every time it's the same subtests, and yet the schools keep making excuses for why she does so poorly. I can't believe I never picked up on this before, but I've never sat down and gone through huge piles of records for the past 11 years, either. I usually just take the last few years, since the last batch of testing. But this time I wanted to go through it all, and boy and I glad I did.

The excuses the schools have made for the serious discrepancy in her subtest scores are kind of amusing. She was tired, she was bored, she was distracted, she has ADHD, she lost interest. It's amazing how many excuses there were for what appears to me to be a serious pattern since her first testing in 3rd grade. She's always had an IEP, she's definitely got some pretty serious issues, but when I started putting all the IEP meeting reports together, I was astounded to see how much had fallen through the cracks.

Does she still need speech therapy? Well, no. Not unless they teach her how to modulate her voice or to shut up all together. Wishful thinking. But that doesn't mean her speech problems are gone. If anything, they're just as severe as they were years ago. She's got word retrieval issues. Yes, speech therapy taught her how to navigate around words for compensation, but that doesn't mean that she doesn't still have the issue. It's no longer in her IEP.

The reason we're having this meeting is that this year the school decided that she no longer has an NVLD due to 'their testing'. It doesn't work that way. Nobody just falls right off the spectrum once they have been placed on it. NVLD isn't something that one gets over. You have it for life.

I hate the confrontation at these meetings when it's my own kid. I love them when I'm fighting for a client's kid, but when it's my own child, I get so ticked and overwhelmed and hurt by the way the meetings are held. I really hate them. So I bring an advocate to help me center myself and to keep me on track.

I know what my kid needs, and I know how important it is to have a good IEP for my Girl to perform well in school. We'll work through it. But it just makes me nuts that so much has been dropped or lost along the path to this current IEP.

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Blogger Daisy said...

Word retrieval and auditory processing issues are huge. These problems can certainly contribute to difficulties in school -- especially in reading/English classes.

2/6/08 7:08 PM  
Blogger thecatsmeow said...

Yikes...how terribly familiar! As another NLDer who "fell through the cracks" (more like gaping chasms, no?), I can totally understand your disgust with an educational system that still doesn't "get it". Unfortunately we didn't have those "years of paperwork", because although they realized early on that I had issues, they weren't smart enough to pay proper attention. Thus, I didn't get a proper dx until I tried to go to college and fell apart academically. Ick! At least you're fully aware of her issues, which I could not say for anyone close to me. (Not assigning blame here, they just didn't understand those things 20 or 30 years ago...)

These days I know so much about the bureaucracy surrounding disability it's not even funny...and it doesn't stop once you get out of school, either. (Like you said, NLD isn't something you magically get rid of!) But at least now, after years of craziness, I've managed to settle into a decent career despite everything. I hope your daughter has the same fortune...

2/6/08 7:11 PM  
OpenID surpriseofunfolding said...

Ugh - it sounds like some stress comingup for you. I'm glad your daughter has a knowledgeable adn loving advocate in her mom. My brother struggled with dyslexia in his school years and went on to successes at school & work (masters in electrical engineering) - but he sure needed the help along the way.

Sending you good vibes.

Also, I used your thoughtful comment to kick start my latest blog entry - I hope you don't mind ?

2/6/08 11:13 PM  
Blogger Robin said...

I think bringing your own advocate is a brilliant idea. We brought M's psychologist to ours and it affected the whole dynamic of the meeting in a very positive way.

I'll be thinking major good thoughts for you and the girl.

3/6/08 12:36 AM  
Blogger madamspud169 said...

There's a lady who blogs about the problems she has with the schools and her autistic spectrum children. The schools and the law have failed both her and her kids in the most disgusting ways imaginable. She isn't allowed by law to homeschool, so you would think the school system would have facilities for children with various disabilities. Right? Ummmm, No! There's no school places where her child could learn safely and happily so she has to battle not only the schools but the law as well to try to get an education for her child.

Her blog is http://www.laaneworld.com/

She does a lot of pay-per-posts but the real life problems are interesting. I think you'll like them too.

3/6/08 5:19 AM  

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