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

When things are different.

Thursday, April 2nd, 3am: The first thunderstorm of the year. Waylon is awake. I make sure the door alarms are on and go back to sleep on the living room recliner.

5am: Thunder is rattling our windows. Waylon is sprinting back and forth in our living room with his ears plugged. I already know the unfortunate truth: the thunder and rain are the first of many things today that are going to be different. Lord, help us through this day.

6am: Waylon puts on his socks, shoes, and jacket. He paces the living room floor, "school, school, school, school".

"Not yet, buddy. Today is going to be different. First doctor, then school". Does he understand?

He went out to the garage to wait in the van.

7am: I clicked the baby's car seat in next to him in the van. To put it lightly, he is pissed. (The baby does not usually come with us). We have to be at KU in exactly one hour and 30 minutes. I strategically back the van out of the garage while blocking Waylon's meltdown blows from baby Lucy, who just wants to babble and jabber and play with her shoes.

7:15am: Of course, we are stopped for a freaking train. Waylon plugs his ears as it passes, "no train, no, no". Then he puts his sunglasses on (yes it is still raining) and chills out. "The train makes me mad, too, Waylon." Maybe I need to get myself a pair of those sunglasses.

8:15am: When traffic slows to a stop (stupid JoCo rush hour), he whines "No, no, no, no" between quick shallow breaths. The highway is for driving, you know. This is different. We're supposed to be on the sixth floor of the doctors building at KU Med in 15 minutes, and we're sitting in a parking lot on I-35. Now both of us are hyperventilating. And we really need to make it to this appointment. 

8:30am: We hurry out of the parking garage and into the doctors building. These stupid elevators. There are four of them, and they really tick him off. We push the button next to one, and never fail the one behind us opens. "No, no, no open door. No open door!" People get off, people get on, Waylon yells, "No open door! No open door!" He tries to pry open the door beside the button he pushed. When that doesn't work he just beats on it with closed fists. The open elevator leaves us. I think I need a t-shirt that says HE HAS AUTISM NOT A THIRD HEAD.

8:40am: We are finally off the elevator and on the sixth floor (literally). There is a really long hallway between us and the child psych registration desk, and try as I may, I cannot get him off the floor.

So I do a quick Moby wrap and attach Lucy to the front of me. I am now wearing one child and dragging the other down this stupid hallway. At least we're on the psych floor now. Surely they understand?

8:45am: We are 15 minutes late, but we've made it close enough to the registration desk that I can tell them his name, "If she'll still see us" I add. He is totally wigging out now, and I've had it. I point to the floor and say, "SIT". I meant for it to come out of my mouth sounding very stern and serious. But the truth is, I'm choking back tears and my voice is shaky and I sound like I'm on the verge of a nervous breakdown. (Maybe I am?) At this point, I am certain that either Waylon or Lucy will be taken away from me today.

And then, the most caring and patient child psychologist in the whole entire universe comes out to meet us in the hallway. She says in her sweet little entrancing voice, "It's going to be okay". (Oh thank God).

9:50am: Waylon walks out of the doctor's building like a perfect gentleman. There are no other people at the elevators, so we just wait patiently for the door next to the button to open. Back in the parking garage, I move Lucy's seat to the back row, where she is safe to babble and jabber and play with her shoes. She seems okay with that.

10:30am: Waylon is not real happy that we've arrived at his therapy center (but I am). He yells at the staff for a while, then heads back to start therapy. His lead therapist sits down with me with some graphs of data they've collected, and throws out some big words that mean We're Making Progress But Not Enough. And I smile and nod and then Lucy and I head back to the van.

These sweet people (who get paid a lot, but not enough) specialize in behavior modification. Before I pull out of the "Autism Families Only" parking spot, I say a little prayer of thanksgiving for his therapists, and asked the Lord that He might help them modify a whole lot of his behaviors before 4:30 this afternoon. Amen.