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colleenoz

Just venting

colleenoz
12 years ago

I feel so angry about my friend's grandson. A couple of years ago or so he started tripping over and falling for no apparent reason. After months of tests he was diagnosed with Friedrich's Ataxia, a degenerative genetic condition (very very rare) which essentially means his muscles will degenerate over time. FA sufferers generally don't live much past their mid-20s :-( and this boy is 15 now. He's been in a wheelchair for a few months as a concession to his now very weak legs, which he finds very hard to bear. It's a small town and now he's the "weird kid".

What angers me is that the school here seems to have thrown him to the wolves, whether consciously or thoughtlessly who knows.

In his grade, all students do two weeks of work experience where they are matched to local businesses and do some simple work there to see if it's the sort of job they might like later on in life and get a taste of the discipline of work. This boy was all set to start at one local business, and on the morning he was supposed to start they contacted him and basically told him not to come in, they wouldn't let him do work experience as they felt his wheelchair would be a safety hazard in the confined spaces of their store. I can sort of see their point, but could they not have decided this when the students were being matched with businesses and could the school not have ensured he was appropriately matched? As it was he ended up spending the two weeks at home while all his classmates got excited about working.

Now his class is away at a tourist destination for a school camp. As the place they have chosen is a place where you go hiking to admire the wonders of nature, it's an activity that again this boy is precluded from, and again he's staying at home while all the others have fun. Could they not have shortlisted destinations and activities that would include this boy? As a bonding exercise I think it's a cruel failure and a chance to teach compassion and consideration passed up.

His parents have made many complaints to the school over his treatment but I suspect the school may have decided they're just complainers and is ignoring them. I'm glad my daughter isn't at school under this administration because my thought would be that if they can ignore the needs of a student who obviously has problems and needs some extra help, would they ignore even more the needs of students who don't obviously need help? I certainly wouldn't want my child going to such an uncaring school. Fortunately it's nearly the end of the school year and next year he will be attending a different, larger school which will one hopes be better equipped to help this boy.

It's so sad that, to be blunt, he doesn't have a lot of time left and what little time he has is being made miserable by uncaring bureaucracy.

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