There is one thing I love unconditionally about autism. Calvin Michael Stroh-Simon. My baby-doll son. That kid in the picture with the face like an angel, who is right now filling the room with sweet little songs in his mysterious elf-language, sitting by the window watching the wind move, his favorite.
So wanna know what I hate unconditionally about autism? Just about every other friggin thing.
A big thing I hate, one of the biggest probably, is not being able to get through a day without slogging through some multi-step bureaucratic nightmare that takes a ream of paper, no less than 35 phone calls, and somewhere around 80 emails to negotiate from A to Z. Maybe that doesn't sound so bad, but if you know me well enough you know I'd rather get a soapsuds enema out of a power washer. I AM NOT GOOD AT THIS. I'm not built for it. I need directions, clear ones, step 1, step 2. It's why I bake amazing cookies and can crochet a nuclear device out of recycled T-shirts. Recipes. Instructions. Insert tab A into slot B, and all the better if there are illustrations or a youtube video.
Guess what. There ain't no fucking recipe for this everloving mess. Not even close.
Maybe picture it as a game of Chutes and Ladders, remember that fun little pastime where you could be a hairsbreadth away from the promised land of Chocolateville or whateverthehell, only to land on the fun little space that sends you flying back down to just about where you started? And there your little piece lands, right on its ass, wanting to punch things until all its little cardboard knuckles are bloody and raw? Remember that?
Well, ok, as usual I exaggerate. It's not that I "can't get through a day" without Chutes and Ladders hell. I can get through plenty of days without doing any goddamn thing anywhere on the whole goddamn board. But here's the bitch of the thing. Any day I take off from Chutes and Ladders is one where I haven't done everything that needs to be done for the boy and his care--and then by extension, for the 4 of us here who all live together in our crooked little house. Neglect the cable bill for too long, they stop letting you use the on-demand feature...disappointing but oh well. Neglect playing Chutes and Ladders for too long and the bad things that autism can do to your life grow and swell and bloat and you're worse than nowhere.
Oh, and there's a punchline. Any and all assistance you're trying to secure through this crazy-ass labyrinth might not even exist for all you know...or you may or may not be deemed worthy to receive it...because please, don't worry, if there's anything that we in the world of developmental disability know for sure, it's that we're not "entitled" to any of these gifts and graces we're devoting our lives, full time, to get our grubby 47-percenter hands on. So anybody overly concerned that I'm expecting a free ride while I lie here on my ass and eat unsold girl scout cookies, keep your shirts on, drink your tea.
That's all, just full of venom and self-pity and hormones and profanity and stupid stupid tearful rage today and I know if I post this people will say kind things and remind me things aren't really as bad as they seem.
So go.
(P.S. If you want you can even tell me I'm still pretty.)
2 comments:
You're beautiful. And I love you. And I hate that this sucks and paperwork sucks the life our of you. ((hugs))
do five push ups. girl ones are fine. not the comment you were expecting? it's not the comment i would have ever given 15 years ago when life was simpler, money flowed more freely, "taking responsibility" seemed exciting and adult like the way it looked when the seniors had car keys. as it turns out - it's not all that, and every step forward is a twelve step program right back to where you started. or even sometimes you go further back - like a bad spin on backwards evolution.
do five push ups. you know why? you can control those. and it's only you face to the smelly carpet with the dog sniffing at your cheek - and you get to choose if you are going to go back up from the face down position. and you do five. and you go on with your night. and then in the shower tomorrow you feel this strange little shadow of a muscle you didn't have this morning. and you are reminded that you did five. and the next day you might do six. you might do five again. and that's fine. but you did something that you accomplished.
i can only do 10. but when i finish i feel strong like bull. like i can take it on again. i think you need that. drop and give us 5. let tracy do 5 - just for her.
and yes - you're still pretty as far as i can see.
xo
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