Abby’s First ACCT Therapy in Years
Today, Abby had her first ACCT therapy session in years. She’s had a Tobii eye gaze device since around third grade, and this will be her fourth device. They’ve come a long way — from big, heavy, clunky machines that only worked for a few hours before needing two huge batteries swapped out two or three times a day, to now being run on a larger iPad.
The team at school has been telling me about this new device for about a year, but with everything Abby’s been through lately — and with her aging out of the school system — I just wasn’t up for another fight for anything.
We recently went three months without her food or supplies being paid for because insurance and the system absolutely stink. The rage I feel sometimes, while trying to be the perfect mom and advocate, is impossible to express. Now that she’s turned 21, they’ve decided to put all her food, enteral supplies, briefs, and more on hold while they get yet another prior authorization. For a kid with a total and permanent disability. But I digress.
Anyway, the last time we went in for a device, I was so frustrated. We went from her being able to go in, say she was thirsty or wanted to eat, and get the approval — to having to try every device available for months and prove over and over that she could use something she’d already been using for a decade and a half before anyone would sign off. I just didn’t have the patience or the energy for another round of that.
Today, though, I swallowed my helicopter-mom advocate pride and said, “Go ahead and do it like you would any other kid. Set it up and see how she does.”
I’ve never let Abby use one of their pre-made vocabularies before. I’ve always programmed every single button on every page — every picture, every link. I think it’s important, with symbol-based communication, to always use the same picture for the same word or phrase. That’s her language. Abby’s language has always been Boardmaker — besides the ESP and eye gaze, of course.
Today they used a full board with what’s called TD Snap. It’s very pre-programmed, and I always assumed it would be too much for her — not personal enough. Once again, I underestimated that girl.
I sat next to her wanting to scream when she asked for Taylor Swift and then Ed Sheeran. The tears came when I asked if she liked it and she said, “I like that. This is great. I love you, Mom.”
By the end of the first visit, the SLP was already asking which stand we wanted and said she was ready to start her report to get the device ordered.
The first visit!
She’ll still go to therapy each week while we get it customized and add vocabulary specific to her, but my girl did it! The first time!
Fly, baby girl. Fly.
I’m so proud of her I could run down the street screaming. I can’t believe I ever thought she might regress after school ended. Not this chick.
💜 Happy Rett Syndrome Awareness Month. 💜
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