Every single thing we do

Hey girl. I just love love love that you messaged me and asked for input on your paper about autism. Sorry it took me like forever and a week to get back with you. Could you just tell your professor that getting an hour of time from an autism mom is kind of like milking a chicken?

So anyways, you asked what I know about psychosocial rehabilitation. Can I tell you the truth? Nothing. Nada.

We have done years of autism therapy – speech therapy, occupational therapy, DIR/Floortime, TEACCH, ABA. We have read and written Social Stories, been to social skills classes, we've used PECS, and learned about verbal behavior and pivotal response training. I pride myself in the number of books I've read and the hours I've spent researching nearly every evidence-based autism therapy. And you want to know about psychosocial rehabilitation?

So I googled it. 

Turns out, there's an overwhelming amount of stuff out there on psychosocial rehabilitation- and I am like crazy-tired. The best my blurry eyes and foggy brain can tell, it sounds like psychosocial rehabilitation is not really any one specific type of therapy- but instead, it is a general idea of how to encourage people with autism to keep developing and learning, and thereby enhancing their overall quality of life (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1636121/ ). (Are you getting nervous about asking for my help yet?)

So then I got to thinking- wait a minute- isn't that every single thing that we do? Every single thing- from his Picture Exchange Communication System (PECS) when he was in preschool, to Social Stories about how to get through the grocery store, to big things like his ABA (Applied Behavioral Analysis) therapy center... All of it is so that we can help Waylon continue to develop and learn and thereby enhance his quality of life. 

Someone told us once, that no matter how severe your child with autism is, if you can teach them one small skill- you have given them a small slice of independence and thereby enhanced their quality of life. For example- if Waylon has to live in a group home someday and relies on someone to fix his meals, and help him bathe, and pay his bills- if he can tie his shoes, he has the independence to go outside whenever he wants. So maybe part of Waylon's psychosocial rehabilitation between now and adulthood is teaching him to tie his shoes. Right?

Waylon will never stop needing support to help him develop and learn, to maintain his quality of life. So this means that Waylon (and the rest of the one in 68 kids with autism who will be adults someday) will need this psychosocial rehabilitation for their entire lives.

There was a very interesting series on dateline NBC last week about this- you should watch it- http://www.nbc.com/dateline/video/dateline-april-12-2015/2857335. Get your kleenexes ready.

You know what? I'm not quite ready to think about Waylon, the adult. But I suppose it's important to get ready. Because when the time comes (which will be sooner than I realize, I'm sure), I want the world to be ready for Waylon.

I hope this was helpful, even if it was forever and a week late. And I hope you get an A! PS- I think I'm going to turn this into a blog post, too. Win-win!

Thank you for doing your part to help get the world ready for my son.

Lindy