Welcome to Holland
There is a great short essay by Emily Perl Kingsley about having a kid with a disability. I’ll link it here. It’s really short. I’ll wait while you read it.
Back? Good. I’ll warn you now, this is a very long post.
I haven’t talked a lot about my experiences with Alex (otherwise known as Banshee in other posts) but I think it’s about time.
Before I get started, let me tell you exactly what he’s affected by, so you’ll know what I mean later on. He has Cortical Blindness/Cortical Visual Impairment, which means that he’s legally blind. He has some vision, but it works like a short in a lamp. Sometimes he can see, sometimes he can’t. On good days he can watch TV (albeit three inches from the screen) on bad days, he runs into walls and is exceptionally cranky. His eyes aren’t the problem, it’s his brain (although, in our most recent Opthamologist appt, he did find some scarring on Alex’s optic nerves). It can’t process the signals it gets all of the time. His left eye works much better than his right, so depth perception is a bitch. He uses a cane to get around, and I must say, I may be biased, but he’s cute as hell tooling around with that cane. He’s really good with it.
He’s microcephalic, which means that his brain is very small for his age. It isn’t as visually noticable as it was when he was a baby, but his head is a little small for his body. Microcephaly can cause developmental delays (and has in his case). Alex is a special case, because Microcephaly can often be devestating to a child, making them extremely handicapped and very ill. Alex is the exception to the rule (which makes him completely awesome, but more about that in a bit.)
He’s also hemiplegic, which means that his left side works much better than his right. His right arm stays bent most of the time, and the muscles stay very tight (hypertonicity). His right arm is more of a “helper” arm than a fully functioning arm. He can use it to help balance things, but not for anything that requires fine motor skills (like tying shoes or buttoning clothes). His right leg is only mildly affected, and the only thing you’ll see is that he develops a limp if he’s tired, sick, or ornery.
He has developmental delays, meaning that he’s functioning at about a five year old level, and some behavioral issues (meaning he is prone to flip out over things that would just only mildly tick other kids off) and some self-soothing issues (which, unfortunately, manifest themselves by his spinning around in circles, chewing on his fingers, and occasionally hitting himself or banging his head against things).
If you’re wondering, I didn’t drink, smoke, or do drugs while I was pregnant with him. I had a mostly normal pregnancy, except for when I went into anaphalactic shock due to a new food allergy. When he was just a few hours old, he contracted meningoencephalitis which caused brain swelling and grand mal seizures and had to spend almost four weeks in intensive care. The M-E fried his brain and left parts of it dead, which is why we have the issues we have today.
More after the jump.
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