User:Woozle/blog/2009-03-18 0735 Life With Josh

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Life With Josh
2009-03-18 0735

I'm not sure anybody really understands how completely Josh dominates our day-to-day existence, even when he's not here. I'm not sure I can explain it very well, either.

If any of you (whoever you are... I have no idea if anyone actually reads this) have ever parented a baby, then you know what kind of job that is. It's 24/7, interruptions at any hour of the day or night, constant messes to clean up, incidents to prevent, feedings to conduct.

In some ways Josh is better than that. You just put the food on the table and he eats it (with his hands, and gets grease on everything). He does most of his own toileting (except for wiping... unless he gets tired of waiting and does it himself, when he's likely to use up every scrap of paper in the downstairs bathroom and not necessarily get clean). When he's in a good mood, he keeps himself more or less occupied.

But imagine a somewhat self-sufficient baby. You can't talk to it, and it can't talk to you, but most of the time this isn't a problem.

Now imagine that baby adult-size, with an athlete's strength and endurance.

Imagine having to lock all the outside doors (and keep the keys hidden), to keep the baby from escaping outside and running away faster than you can catch him, walking heedlessly across busy streets and over to his grandparents' house to eat all the cheese in their refrigerator... possibly without any pants on.

Imagine having to lock the doors of many of the inside rooms to keep that baby from getting into things (remember: this baby can reach high shelves, turn doorknobs, use keys, and break or remove any child-lock known to science), and having to give the other kids (ages 8 and 10 when this started) their own set of keys so they could get into their own bedroom or go outside to play.

Imagine that this (adult-sized) baby will sometimes start hitting his younger brothers if he doesn't get what he wants. If you lock him in one part of the house to keep the other kids safe, he may start hitting the walls or the windows, or start slamming the medicine cabinet door (with its glass mirror, which miraculously hasn't broken yet), or hit any pictures hanging on the walls (which he has broken; we can't hang pictures anymore if we want them protected from dust and Josh).

When Josh is in the house, it's best just to check on every unidentified noise (is he laughing, crying, about to start hitting things? was that yell a child being attacked, or a child playing at being attacked? was that thump Josh knocking something over, or just a cat leaping down from a height?), regularly check to make sure Josh seems to be happy, make sure his juice cup isn't empty, offer him food before he gets hungry (once he gets too hungry, it can be difficult to get him to start eating, and it spirals downward from there).

When Josh is out of the house, that's the time we spend doing maintenance: changing his bedclothes, making copies of his movies before he destroys them (we're gradually building up a library of copies on my hard drive, so this won't go on forever, but finding software which successfully copies commercial DVDs took a lot of time, and the process is slow), and trying to make progress through a mental healthcare system which was designed for people either significantly more or significantly less functional than Josh is (sometimes both; he's more functional physically and less so communicatively than most autistic kids, but he's not an immediate or constant danger to himself or others) and which has been ravaged by privatization and decimated by budget cuts both before and after the current economic meltdown.

We missed Benjamin's teacher conference yesterday because we were focused on trying to get SSI for Josh, which apparently could help with getting him set up in a group home (and should help our financial situation too, while he's still living here, though at this point it's probably not enough), and forgot about it. We sat for about an hour and got an appointment for April, where they'll probably turn him down again (it may depend on whether they specifically ask about bonds, and whether Sandy's bank balances happen to total more than $2000 when we go in there -- how do you answer a question like "how much do you have in the bank?" when it generally goes from a high of maybe $3000 some months down to almost zero? And when they don't allow you to count debt of any kind against that balance? And when you know that any answer over "$2000" automatically disqualifies you? Whose bright idea was this system, and what goals does it serve?).

Oh, right, and when we're not working on Josh projects, sometimes we try to get a little bit caught up on stuff for the other kids... or even (selfishly) try to work on our own projects – like (in my case) trying to earning a little money (...or at least doing the work, and hopefully finding time to generate invoices for it later on; I've got about $1000 of work I did in December or January which needed some revisions to the invoices, and I haven't had time to fix that yet) so I don't have to borrow from Sandy and further accelerate her debt-spiral. I'm also two three years behind in entering supplier catalogs for and many weeks behind in placing supplier orders because there are some things which need to be fixed before I can even generate the lists of things to order.

This is turning into more of a free-form ramble than I had originally intended (partly because I started it last night but then got interrupted by the fact that one of the DVDs I had burned for Josh wouldn't play and it was upsetting him -- so I spent the rest of the evening trying to fix the problem and didn't get to finish the post when the thoughts were still clear in my head), so I'm going to wrap it up here and hope that it makes some kind of sense overall.

Also, it's time to take Zander to school.