Wednesday, October 15, 2014

The Mythical "Services"

I've written before about how some services can be more harmful than helpful. That's probably no surprise if you've read about shock "treatment" and some of the uglier aspects of ABA. (I should mention that the ABA therapy we experienced was not generally cruel, was helpful in some regards, and was even sometimes enjoyable for my son. The problem was that overall it was an extremely poor fit for his personality, and the practitioners were not flexible enough to adjust. He's currently in a very different form of ABA program with very different goals -- basically it's ABA mainly in the recordkeeping and that the Regional Center will pay for it! --  and loves it.)

But what's on my mind right now is the idea that "services" are the Holy Grail for parents with disabled children.

I'm not discounting the very real frustration of parents or disabled adults who can't get the services they need from the agencies that are supposed to help them. That's wrong, and it sucks, and it needs to change.

But I'm very aware this morning, not for the first time, that services aren't a magic bullet. We get respite services, 24 hours a month. And we rarely use them all because we can't find a provider who can accomodate our needs. 

Yesterday was... bad. My husband has been away on a business trip, and I'm thoroughly sleep-deprived. Of course my son is stressed out too because his father is away. Almost everything you can imagine went wrong and by the end of the evening, I was completely out of spoons.

Thankfully, I talked with my husband and he had some suggestions for what I needed to do, that I was too exhausted to think of for myself. This morning I feel human again. I'm lucky to have had that long distance support. But it would have been even more awesome to have some hands-on support this week. Services that I theoretically have, that are already paid for... and yet I can't get.

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