Susan's Blog

Monday, May 9, 2011

Fear and Dogma Can Get in the Way

I was having dinner with a friend tonight and we were talking about the various autism programs around the state and their philosophies.  This friend is a colleague from the disability advocacy community, and he has had decades of experience with all of the programs and players in the adult disability community.  He has helped me plan for Nat’s group home, and he has explained all of the issues and challenges I have to confront to make this happen.

We were talking about how autism school founders are very passionate and forceful personalities — they have to be to do what they do — but that sometimes the schools end up being too dogmatic for anyone’s good.  Nat’s school is a terrific program, but their flaws are that they are too afraid of lawsuits, so they are too risk-averse; and that they are too invested in behavior modification.

But parents do it, too.  Risk aversion may not sound like a problem, but without risk you cannot have growth.  You have to be able to assess a person’s abilities and potential, as well as the moment and circumstances, and then try it if the difference between the former and latter are not too great.  You have to try things in order to open up your world.  You have to be willing to fail in order to succeed.  It’s a cliche for a reason.

Nat learned to ride a bike independently because I let him ride around the block, away from me.  I couldn’t help it; he just took off.  I had to pray he’d be okay.  But I had a lot of evidence to let me feel that he would be.  Why not?  Just because he’s disabled doesn’t mean bad things will happen to him more than if he were not.  And didn’t I feel just as terrified the first time Max got behind the wheel of a car?  But I still let him practice driving.  Risk needs to happen with our disabled kids, just as it needs to happen with our non-disabled kids.

We say, “Well, it’s just different with my autistic kid.  I can’t explain why.”  You know what?  We have to explain why.  We have to get to the bottom of that.  Because we might discover that it is irrational to feel that way.  There may actually be no real reason that the autistic child gets the kid gloves and the normal kid gets opportunities handed to him.

Too much of any one philosophy is probably too limiting.  We are human and we get sick of things.  Stuff loses its efficacy.  You need to change it up sometimes.  You need to step outside of the lines once in a while.  And so I remember a couple of times when Nat’s school and I bumped up against each other, and I just wanted to write about it so that maybe a reader or two can learn from this.  The first time we disagreed was when Nat was having a lot of outbursts of aggression.  I wanted the school to deal with Nat in their way, which was why I was sending him there, but I also wanted them to have Nat apologize to the staff or student that he’d hurt.

This being a behavioral school, there was no way they were going to draw attention to the undesirable behavior by having Nat apologize:  “I’m sorry I hit you.”  That would cause him to focus on the hit and to see that it was a big deal to that person, something that got attention and potentially become something that was therefore rewarding to him.  But, I would argue, Nat needs to learn real-world behaviors and consequences; he needs to know how to apologize.  He needs to understand that his actions have an effect on others.   Now Nat apologizes.  Not only that, he tells me when to apologize, by saying, “I’m sorry I yelled at you,” if I yell at him.  That is a beautiful thing.


I love that he says, “I’m sorry I yelled at you”.

Sometimes it is so hard to remember to assume my twins can understand everything I’m saying. Occasionally lately Brendan has reacted as if he understood when I’ve been talking about him in his presence. I’m trying to remember, and I’m going to say something to his teacher and aides, too.

— added by Alice on Tuesday, May 10, 2011 at 2:00 pm

You go girl. I taught Jeremy to say “sorry” a long time ago, and it has stuck! Even if he doesn’t always “care” if he does something inappropriate, he knows it. Also, typical people around him can hear an effort on his part to take responsibility for it. People like that 🙂 I agree the school thinks these kids will NEVER understand consequence of negative behavior…bulls**t! I try to get this across to them too, it’s very difficult.

— added by Candy on Tuesday, May 10, 2011 at 9:44 pm