"Change, when it comes, cracks everything open."
Dorothy Allen

Saturday, November 6, 2010

Autism rocks...and flaps and spins...

I have been neglectful, faithful readers, and for that I apologize.  I have, as always, had a crazy busy week, so the blogging has fallen behind again.

Stage in main hall

Like minded people.  Lots of us.

I spent the last 3 days (Wed, Thur and Fri) at an autism symposium in Toronto.  It was really good, and I am really glad I went.  I decided against staying up there, because I wanted to see the kids, so I drove up and back every day.  It was 4 to 5 hours of driving each day.  Craziness.  And on the third day, I got hit by a rock and got a big chip in my windshield that I now have to have fixed.   Mother fucker.

Anyhoo...the symposium was really good.  The first day was an all day session with a lady called Michelle Garcia Winner.  She is a specialist in social behavior and autism.  She works mainly with high functioning and Asperger's, but she had some great tips, and was very engaging and funny.  I found her talk very good and useful.  From her I really started to understand how I make assumptions that Sebastian understands the basic elements of socializing when that might not be true at all.  I assume that when I tell him to "smarten up", he knows that I mean "behave."  But he might not.  I also learned that declaring behavior appropriate or inappropriate implies that an emotional judgement has been made, and that it is better to call it "expected and unexpected" behavior.  She also gave me thoughts about new ways to interact with Sebastian, like working on "just me" and "thinking of others" times and expected actions, "weird thoughts", and observing the world around us.  Through observing, he will learn what I expect, and I might learn what he thinks.  Good session.

The next day was not so good.  The key note speakers were OK.  The first was fine, but boring, (since off the top of my head, I can't remember what she talked about) but the second...shit.  She was a geneticist, and obviously thought all the rest of us were too.  I actually got up and left before she was done (only 10 minutes).  It let me jump the food line across the street.

The afternoon was a bit better.  I went to one about Family Consortium planning.  This is planning for kids with disabilities, once they have grown into adults with disabilities.  Now, those of you that know me really well know that I don't talk about Sebastian's future a whole lot.  It hurts my heart.  I try and be realistic, but the facts are hard to swallow.  So I don't think about them.  I worry about what will happen when I die.  I know all parents worry about that.   But the fact is, most parents know that their kids will (likely) have a job, a partner, and be somewhat self-sufficient.  I have none of that as a consolation.  I feel a little better now that Sawyer is in the picture, but I don't want her growing up to resent the fact that she is destined to be her "brother's keeper." And I don't want that for him.  I need to stop writing about this, before the tears really come.

Even Axle got his "autism" on.
Anyway, the family consortium is like a group home, but one where the families of the individuals living in the home are almost entirely in charge.  They made final decisions on staffing and schedules and food and events and everything.  They work with a service provider that would provide staff and therapists etc, but the families get final say in everything.  It was a little boring, and since the speakers were from the US, they didn't know how things worked in Canada.  But it gave me hope and something to think positively about and that is always good.

The final session of the 2nd day was one that I was REALLY looking forward too.  It was called "I just can't help it: OCD and Autism".  Bastian's stimms have been really strong lately, and I was hoping for some concrete ideas to help manage or every diminish them.  But alas...it was another scientist, talking about how interesting his research is.  But none of it was practical or in anyway effective to the life we are living now.  *sigh*

Because of the low performance of Day 2, I considered bailing on Day 3.  I had gotten to go the symposium for about 60% off the normal price, so I felt I had gotten my money's worth.  But in for a penny, in for a pound, I guess.  I headed off again.

The kid has sass.

I am so glad I did.  Day 3 was wonderful.  I listened to two sessions with Paula Kluth.  If you have a school aged child with an intellectual disability, I highly encourage you to look her up.  Her primary focus is inclusion in schooling for children with disabilities, including autism.  She is engaging and smart and funny and her approach is just straight up common sense.  But she made me look at Sebastian differently.  She inspired me. She talks about kid's obsessions ( the very thing I was hoping to hear about the day before) and how they are not necessarily a bad thing.  That they can be used to help kids learn.  That they are not secondary to the kid's life, but an integral part of their personality that should not be shunted aside, or used as a reward.  If your kid loves dinosaurs, have him learn sequencing by looking at the different ages of dinosaurs.  If the kid loves washing machines let him learn to read with the owner's manual.  Use your kid's passions, collections, rituals and help them learn.  I immediately thought of Sebastian's papers and pictures.  How I could sneak sight words, daily instructions, math problems and other things into his papers.  I am working on it already. 
I also sat in on a sessions with Stephen Shore.  Professor Shore is on the spectrum (Aspergers) and was talking about sensory issues.  He was awkward to listen to at first, but as he continued, I was mesmerized.  He was talking about Sebastian.  About how it was impossible for him to sit for a haircut, because he could feel the pull of each individual strand of hair as it was cut.  About how certain textures under his fingertips or in his mouth were incredibly soothing, and others would make him vomit.  About how he would ignore his mother's call because he honestly didn't know that she was there, even though she was a foot away.  He talked about how some things that we call stims, or OCD rituals might actually be sensory issues and neurological requirements or body needs.  I immediately thought about Sebastian and his 5-second clips of movies.  Sebastian (for those that don't know) will watch and rewind the same 5 to 10 seconds of a movie, and watch it, for hours.  He will jump and flap and hum while he watches it, over and over and over and over...until either Geoff or I lose it, and scream at him to shut it off, or hide the remote control.  He can't stop it..no matter how many times I scold him, or talk with him or even slap his hand.  He CAN'T stop.  And now, rather than believe that it is something OCD driven, I wonder if it is sensory related.  Is it the movement on the screen (he tends to pick an action filled clip- someone flying, someone falling down)?  Is it the auditory repetition that he finds soothing?  I don't know.  He can't tell me.  So, my plan is to observe, and try my best to figure out why he does it.  And once I can figure that out, maybe I can figure out something else that can be done to meet this need he has.  And if I can do that, maybe I can find a way to meet this need in a way that doesn't inhibit but might actually encourage his integration into the "typical" world.  Big order.  HUGE.  But I'm gonna try.  And I am also going to stop yelling at him for it. 

So, in a nutshell, for those of you that made it through this one, was my week.  I found it so fascinating and encouraging.  I was depressed for a while, not because of the autism, but because there is so much time that has been lost.  I haven't done enough for him.  I don't do enough for him.  I get lost in other things, and in my own life, and I am leaving him behind.  But, I made a conscious decision to not think that way.  If he could learn something 3 years ago, he can learn it now.  And I won't be kicking myself in 2 years, thinking "Why didn't I try?"  I am just looking forward...and crossing my fingers. 

Autie and Neurotypical-
aka Sebastian and Sawyer
Rosie N. Grey
The N stands for "Neurotypical".

1 comment:

  1. sounds like a field where things are changing and huge changes may be in all your futures. hard work and hope have performed miracles!!!