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Dec 18

Adventures in Legal Blindness

Nobody wants to hear that her child is legally blind.

Which is part of my problem, I don’t like the fact that he’s visually impaired.  I haven’t come to terms with the reality of it.  I still think, on some level that I know damn well is completely irrational, that if he isn’t labeled as legally blind – he isn’t blind.

Sam was classified as legally blind after the accident.  After the first year, his vision had improved to the point where he wasn’t legally blind, but still significantly visually impaired.  Because we are homeschooling, it was easy to kind of gloss over the reality.  I didn’t have to face that he couldn’t survive in a regular classroom, because I read everything to him.  I didn’t have to deal with the reality that he couldn’t see well enough to write anything – because I’d just do the writing for him.

Then we started the IEP process.  The TVI discovered pockets of blindness in his central vision, which changes things.  On a bunch of different levels, because it raises the idea that he might have cortical visual impairment, which may or may not be something that we can work with – meaning it might be possible for his vision to improve.  Or not.  Nobody seems to know the answer, and it’s not clear to me that it’s worth figuring out.  His score on the CVI scale is the highest you can get while still registering, and I don’t know that it’s worth putting him thru the amount of testing he’d have to do.

But either way – it looks like he does need to be classified as legally blind.

Only it turns out that he was never, in fact, removed from the registry.  So he’s been legally blind all along.  Or as my grandfather used to say (for reasons I can’t fathom now) – he’s blind in one eye and can’t see out of the other.  Which used to be funny – until it was suddenly a perfect description of my son.

There’s nothing about this I like.  Nothing is good about having to explain to my son that he is legally blind, and he won’t be able to get a drivers license.  His doctor and therapist both recommended that we keep it loose, flexible.  Explain that a lot can happen in the next few years – medical advances, his brain can find work arounds – it’s possible that he might be able to drive.  Maybe.  There’s self driving cars too – and lots of kids don’t bother getting a license at all, they just uber everywhere.

But every last little bit of this sucks, and I hate it.

My son is the bravest, sweetest, kindest kid in the world, and he somehow manages to accept the unthinkable, to adjust to the disability and make it okay, and it breaks my heart and makes me unbelievably proud at the same time.

1 comment

  1. Jacqueline

    Thanks for sharing your honest feelings navigating this journey with your son. My son is 9 years old and blind. I know we will have more of these types of conversations in his future. We were a homeschooling family before he went blind at 6, now in public school so he can have services. I recently left my job to advocate for my son and to learn about everything that has to do with this new journey for our family, including public school and IEP’s and learning braille myself, psychologist appts, etc. Like your son, my son has also had a fantastic attitude. We can too!!! <3

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