Wednesday, July 3, 2019

Yep, progress, just not the kind I had in mind


Max walked into the house the other day after a breakfast outing with Dave, and I took off the damp bandana bib he had on. He wears it to catch excess saliva; the operation we got two summers ago was a fail. Because of his cerebral palsy, Max has oral-motor challenges that result in drool. He uses scopolamine patches; they're meant for sea sickness but since they have the side effect of drying up the mouth, doctors sometimes prescribe them for people with cerebal palsy. They help Max but don't totally do the job.

He wears wristbands to wipe his mouth, yet typically isn't aware that he is drooling. While I am grateful that it does not make him feel self-conscious, at the same time I seriously hope he will be aware of it someday as it can be off-putting to people, and may hold him back from job opps.

Dave doesn't love the bibs—he thinks they make Max look babyish, even though they are mostly plain navy blue fabric . We've had issues finding absorbent ones over the years and lucked out because recently, the mom of someone who works at a camp Max goes to sews, and she offered to make a bunch for him. Shout out to Susie, our bandana angel.

So I took off the bib. And Max shook his head and said, "On!" That was a first, as Max has never cared about wearing them. I got excited—maybe this was the start of drool awareness. Except later that day, Dave told me that when he and Max were having breakfast, Max got a little upset because some water spilled on the shirt he was wearing. It was his Los Angeles shirt, which Dave bought for him on Etsy because Max has decided he is for sure moving to California (it started after he and Dave were there in February). 

It turns out that Max tried to wear this shirt every single day at camp last week. His counselor kept texting me that she was doing her best to rinse it, but she finally persuaded him to put on other tees. We just bought two more.

So, Max didn't want to mess up his L.A. shirt. Which explains why he was into the bandana bib. So while he didn't want to wear it for the reasons I'd hoped, he's showing concern for taking care of something he loves, and that's progress. I'll take it!

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Thanks for sharing!



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