Susan's Blog

Monday, May 9, 2011

Nat Without Limits

I have really been thinking about this different set of standards we have for disabled people.  We think that we have to handle our guys with kid gloves.  This weekend I was with my family at my childhood home in Connecticut — as enlightened and loving a group as there can be — and I was struck by how it was still difficult for some of the family to address Nat directly about things. “Just ask him,” I kept saying to people.

People in general are skittish around Nat, and I can’t blame them, he has been volatile in the past.  Plus you don’t want to have an interaction that falls flat; it just doesn’t feel good.

But every day it seems that I am seeing more and more of Nat himself.  Nat, without limits.  I am seeing him fully, without a barrier of assumptions.  Just him and me.  I find I explain things to him assuming he understands a good deal of what I’m saying, even though he seldom answers, and if he does, it is with this baby-talk kind of simplicity.  When someone is as adorable as Nat, it is difficult not to let that fact take over how you treat him.  I keep saying to myself, “He can’t help how his speech comes out.  He probably doesn’t feel satisfied with the way he talks.  Imagine how that must feel.”  So I don’t want to add to his potential unhappiness, by talking down to him.

When others talk down to him, not realizing what they’re doing, I feel so bad for him now.  For people to talk about him in front of him:  it makes me want to cry.  How patient he is, to put up with that.  How frustrated he must feel, to be aware of his difference, his clunky tongue and knotted words, and not to be able to set people straight.  To feel compelled to talk to himself, unable to break the habit because it feels so good, but also to know on some level that it sets him apart from everyone.

The torment of having an autistic child is not knowing what he knows, so you don’t know what level to interact.  And you don’t know what to hope for.

More and more, I am talking to Nat without adapting anything.  Yesterday I got him to calm down over something very upsetting to him — my brother in law was wearing a sports jacket, and to Nat this looked like something you should only wear outdoors.  I had him sit down next to me.  I watched his visible efforts to get this not to bother him, but he couldn’t.  He covered his ears, wrung his hands, walked and walked, muttered about “outside,” and was just so unhappy and frustrated.  I watched him running around.  Other family members watched, too, but I don’t think they understood how I could be bursting with pride.  For I could see how he was struggling so hard not to escalate.  You could see it in his panicked eyes, his busy hands, his stomping.

He did not escalate.  But he needed help.  And I knew that and I stayed with him.  Finally I found a photo on my parents’ fridge, of my brother-in-law in a sports jacket at an inside event!  Nat relaxed soon after that.  And now he knows.  Because I talked to him and he understood.



— added by Timmy's mom on Tuesday, May 10, 2011 at 5:35 am

I haven’t had to do it at home, I can usually get my youngest to understand or we can compromise some how (but I have the one’s from school and there’s a few minor issues lately that I want to add to the book), but they do it at school…. Social stories. Yes, I know he’s grown man but knowing how to react may settle him down more. The Teacher tells me mine goes to the book, reads the story and calms on his own.

Things like suit jackets, using a program like “writing with symbols” if he’s use to pecs, and write a sentence or 2 about different types of clothing – don’t forget that coats are OK in malls etc. Keep the language simple and add that picture.

What to do if someone is on the phone and he has to wait.

The ACS told me my youngest has all the words, is able to manipulate them using phrases from tv, computer, and us but still needs help learning how to answer questions. He needs to learn to build the answers. It would follow that in strange social situations he needs to learn to build a correct response in a strange situation.

The book can be kept in his room. Nobody needs to know except you and Nat.

Just an idea.

— added by farmwifetwo on Tuesday, May 10, 2011 at 7:40 am

I think it’s amazing you knew what was bothering him.

— added by jrbwalk on Tuesday, May 10, 2011 at 8:23 am

Ever since I read about Carly Fleishman I have become incredibly careful around people with autism. They ALL know a lot more that we think…I’m absolutely convinced of that now. Bravo to you Susan for seeing and feeling this with Nat.

— added by Candy on Tuesday, May 10, 2011 at 9:22 pm