
So I've been doing respite care for a couple of families for the past few months. Jumped through the hoops to get my fingerprint card-- which included going a couple rounds with a review board to get a misdemeanor marijuana possession charge still on my record from college overlooked-- and attended the training. I work from home on a couple of businesses, this gives me another revenue stream that also gets me out of the house and gives me a little bit of that sort of low-grade direct human contact that I used to get from going into an office, which is good for me, because with my lifestyle the way it is I can get to feeling isolated pretty easily.
Did it on the recommendation of a close friend who has two girls who qualify for respite. 9 and 12, cerebral palsy and autism respectively. They're both super high-functioning; they have their quirks, but nothing too far outside the range of what I'd consider "normal," at least on short acquaintance.
After spending a day a week with them for a couple months running, I'm starting to understand them a little better, though. The 9-year-old with CP, for example, is a little clumsy, always dropping stuff, but what the heck, kids are clumsy, right? It's only recently that I'm starting to fully appreciate that the amount of effort it takes her to JUST be "a little clumsy" is basically the equivalent of someone without CP doing world-class ballet every waking moment of their lives. Turns out that when she was born the doctors told her mom that she would likely never walk.
Her sister, the 12-year-old with autism, is rail-skinny because the sensation of chewing and swallowing bothers her, and looks closer to 9 than to 12, but other than that she's a pretty normal happy little kid. She doesn't naturally grok the concept of personal space or boundaries; the first time she met me she just walked up without a word and climbed up in my lap like a cat would.
Those two, 99% of the time I can treat them like I would any other kids and it works out fine; the trick is recognizing the other 1% and acting appropriately to their needs. I'm working on it, and I f*ck up sometimes; I'm only just starting to know how little I actually know. There's only so much a one-day workshop sipping cheap coffee at a place that smells like a DMV can actually teach you, and their mom has tried to fill me in, but you also can't completely impart 12 years of tacit knowledge about a child's needs over lunch.
The other family is a little different, they've got an adult son with Down's, and it's pretty severe. I guess a fair number of folks with Down's are able to live semi-independently and work paying jobs, and he doesn't seem like he'll ever be one of those. His folks tell me that he's got behavioral issues, tantrums, acting out, that kind of thing. He never does any of that stuff with me, but then, when he's with me I don't have any other priority than making sure he has a good time. When he's with his folks, they've got to try to live their lives, meaning that they can't always bend over backwards for him.
He doesn't like the word "slow," which I get, because it's a word that people use as a pejorative, but it's also a pretty descriptive word. He just plain lives his life at a slower pace than the rest of us. It takes a conscious mental shift for me to adjust my pace to his.
It's tough for me sometimes, because he reminds me a little of my brother. My brother didn't have Down's, he had Klinefelter's, which is pretty rare and affects people pretty differently. In my brother's case, he had very low testosterone, which led to lethargy, weight problems, and being more than a bit of a shut-in. He lived with my Mom until he died of sudden heart failure at the age of 27. My respite client with Down's is a lot farther from typical than my brother was, but he still reminds me of him, and that's tough sometimes, but probably good for me.
Holding it in seems to be common, dosing him with “looseners” will probably just mean more mess (I speak from some experience - fiber/prunes). The holding in won’t stop, but because it’s softer, there will be more “escaping”. Scheduling “poop-time” (if it’s something you can manage and pinpoint the right window) would probably work out more favourably.
Our son was much younger but we had to put him on the toilet every 15 minutes for a couple weeks to get him trained. Then it was like a few days every 30 minutes, 45, 60, etc. It was brutal but at least he complied most of the the time and finally he got it once we worked up to 90 minutes. Had to remove the pull-up to make it uncomfortable.
This would not work with his brother who will fight like his life depends on not sitting on the toilet for 2 minutes. He's still not 100% potty trained for #1 and we have to bribe him with candy. If he does have an accident making him clean it up (even if you have to do hand over hand with him) seems to work as a small deterrent.
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