I guess it is autism time. One of the few lists I’ve stayed on since M was dx ASD (and we’re talking what, eight years now?) has quite a few parents with children who are getting ready to turn 18, have turned 18, or are well beyond 18. That means services basically stop. If they are low functioning (not where M falls) and in a special needs school (again, not where M is), school continues till 22, and then stops. Apparently if they are on Medicaid/disability as a child, they have to reapply as an adult, and often times are turned down and services just stop. Because 18 is a mystical, magical number where all your ailments and worries disappear. Watch out, don’t step in that.
I’m lucky we don’t have to worry about some things, but this isn’t one of them. My high functioning autistic child will likely be in speech therapy (at a minimum) for the rest of forever. I mean, it’s been eight years already, and he’s come so very far, but looking at (listening to?) his speech realistically, he has so very far left to go.
I believe his current insurance will cover him till 21, so there’s that at least. But will he qualify for disability as an adult? Who knows. Part of me hopes his doesn’t. Part of me is scared he is “disabled enough to need it but not disabled enough to qualify for it” – you know, like so many services he currently falls under that umbrella for.
So while I read about adult day care, adult living facilities, adult companions, and thank every deity I can think of and all the ones I can’t and all the ones we haven’t invented yet, that I don’t see that particular need in his future, I still wonder what will happen when it comes time to move out to college. Or an apartment. Or anything beyond the scope of tomorrow or next week really. Will he stay home? Will we continue to cram so many people into our limited space home? Will he move in with his brother? How about his sister? Maybe all three will be roomies? Is it even fair to even think, maybe, possibly, his brother will wind up being his sometimes companion, looking after him, making sure he doesn’t get into trouble? He is not his brother’s keeper. I was raised to be my sister’s keeper. I will never expect one of my children to do the same.
And again, he is so high functioning. Does he even need that kind of watching? Maybe I’m just borrowing worries from a future that will never exist? My biggest worries aren’t that he won’t bathe, but that he won’t realize he needs to replace his soap and shampoo. Not that he won’t eat, but that he’s run out of food to cook. Not that he won’t make it to class on time, but that he won’t realize it’s time to go because one last YouTube video or one last level of Five Nights at Freddy’s and it turns into five more hours worth of videos or gaming because what is this thing you call time?
My Gram & Zaide always told me not to borrow worries. Apparently I was a worried child. I worried about everything. One day my Zaide told me if everyone strung up their problems on a line, and could pick new problems, they would still go home with their own. I always took that to mean something along the lines of, they might be my problems, but they’re familiar, and not as bad as my neighbors. Now, I don’t know if that’s accurate, but it’s probably true. I grew up with the problems I was worrying about. They were mine. I knew what to expect from them, and if they came to pass, I’d know how to handle them. If I had someone else’s problems, I wouldn’t know where to start. So I remind myself of this little gem of wisdom whenever I have a problem or start worrying about something that might happen sometime in the far-flung future. Every step we take now is getting us ready for what might come later. If it doesn’t come, it’s only a bonus.
I’m still a worrier. Which is hilarious, because it’s only when I stop living in the now and start thinking about the future that I start to worry. Usually I’m a day-by-day kind of gal. It’s what happens after tomorrow that makes me nervous. Maybe that’s why M only measured time by tomorrow’s for so very long. He could tell you about yesterday, today, and tomorrow. Anything else was “after tomorrow” and he couldn’t be bothered with it. Some days I miss I miss the days of “after tomorrow” something fierce. If it was still “after tomorrow” I wouldn’t have to worry so much about after the next few years.
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