Strange Mail

On Christmas Eve, I received a form in the mail letting me know that the state will pay to institutionalize Joey. As I write this, he is lying on the futon, listening to his mp3 player and singing (wordlessly, tunelessly) along to the Frozen soundtrack. He’s four years old now, and the way that the system views him is changing.

Mister Book and I long ago concluded that Joey would likely not be one of the children to “recover” from autism; now that he is four, the state is coming to the same conclusion. His hours of behavioral therapy (ABA) are being cut, and while the cuts are not dramatic, his ABA supervisor has explained that they will probably continue to be cut every three or six months.

81DPO+m5S8S._SL1500_Joey has moved on from the mp3 player, and is playing with one of those Fisher-Price cash registers—it’s mid-morning, and he’s hanging out in a diaper, resisting any suggestion that maybe it’s time to put on some clothes. Kit was recently potty trained, and while both boys went through the same training routine, Joey just wasn’t able to do it. He doesn’t have the body awareness necessary. Joey has another week off from school, and while I’m trying to keep him somewhat busy (he is Captain Cabin Fever), he has been extraordinarily sweet and even-tempered for his break so far. I’ve been carrying him in the Ergo, and the Mister and I have decided that we’ve got to set some money aside for a preschool Kinderpack—one of the only carriers that can accommodate a kid Joey’s size—because boywearing is so good for his mood and stress levels. Can I say boywearing? Babywearing just doesn’t seem like the right word when I’m strapping a four-year-old to my back. The Ergo is holding up admirably, but it’s really not meant for bigger kids, so the strap cuts into my stomach . . . and when Joey climbs down, it is clear that his butt is asleep.

I can’t move past that mail; Joey is a really excellent little dude, and it’s jarring to get an official announcement that he is now big enough and disabled enough that the state will institutionalize him if I wish. Joey’s Regional Center worker has already checked a box saying “No thank you, we have made other arrangements (in-home care),”; maybe she has some sense of how upsetting it can be to get this offer. I might have filled in that blank with something less official-sounding, like “Please don’t take my baby.”

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5 thoughts on “Strange Mail

    • Certainly that was part of what left me so rattled—ah, you have identified me as someone who gives her children away. Thank you, California.

  1. Yup I’m appalled at the suggestion that Joey or my little one with special needs should be institutionalized. Insane. Joey adores his mom and vice versa.

  2. so they are willing to pay for institutionalization but not for the continued support of an ABA worker? What the heck?
    Are there any types of programs locally that can help with body awareness? What about a private gymnastic class? Rather than just traditional OT, this can give kids (& parents) a chance to interact in a more traditional setting. Just a thought because the gym MG goes to is looking at running a specific class mid-day, in conjunction with the individual ABA workers and a consultant to set it up. We are obviously not in your area but perhaps there is something similar locally for you.

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