Susan's Blog

Sunday, August 30, 2009

Declare Victory, Then Get the Hell Out

The successes of the Aspen camp, two very different years of Nat’s life, makes the wheels of my fantasy bus spin. He should live a life where more of that is possible. He is competent and capable in the physical realm, and eager to learn. Why couldn’t he live at least some of his adult life in that kind of environment? Maybe eventually he could be a counselor-in-training at the Extreme Sports Camp, or one like it. Or, as Ned suggested, work for the Parks system? What would it take, let me see:

– A job, to earn his stay.
– A place for him to be.
– A supervisor/support person who could direct him to various tasks.

Here’s what I imagine: Nat would have to help maintain a National Park campground. He already knows all sorts of maintenance and cleaning chores. So his job, what he gives to the Parks, the employer, would be that he could clean anything. He could sleep in a bunk somewhere, where other workers sleep. These people would have to be honorable and helpful, and that is something I would really have to explore. It’s always the people. The others are the problem. People make or break your life, especially if you are more vulnerable, like Nat.

And for the rest of his time, he could climb, hike, swim, and walk and walk and walk among trees, sunshine, and little critters. If he had a designated area that he was familiar with, he would not leave it, he would not go beyond the perimeter. I know Nat, and I know this about him: he does not bolt. He is a guy who knows where Home is.

This existence would not have to be all the time; it could even just be a few weeks out of the year, where Nat goes off to the West and works out there as summer help. We would not have to worry about street lights, or traffic. It would be like a vacation, and yet he would be doing all sorts of odd jobs, which are what he likes. I can ask him to do anything, get anything, go anywhere, and he does, eventually. Here’s how it went this morning, for example: “Nat, go get me the laundry out of the dryer and bring it up and help me fold.”
“No fold.”
“Yes fold. Then you can come back downstairs.”
“No downstairs!”
“Nat come on, please help me!”
And he does. And this is something he didn’t really want to do. But if he were in a place he enjoyed, like a camp-like setting, and he knew that after he finished he could go hiking on a steep trail with so-and-so, then wouldn’t he do it?

The real challenge, as I see it, is getting Nat to eventually realize that he does not always need to be the one who is taken-care-of. He can also be the one who takes care of something. That is a leap. But because he made the leap from being someone who did not see the value of playing with others, to someone who loves basketball because of being with others, I know that these leaps can be made. It takes exposure in a safe environment, and repetition of the exposure, until it becomes something known and expected. It also takes positive feedback, where he feels good about his participation.

So to help Nat grow from being passive and waiting for others to help him, into an adult who accepts that he has responsibilities that he must attend to, both for his own wellbeing and for others — that is the next big step, as I see it. The first steps have been taken; he already knows very well how to go to a job and do what is expected of him. He enjoys it, and he is dependable. He knows the happiness of being a good employee, in several different work venues (Meals on Wheels, Papa Ginos, and message delivery within his school).

Now he needs to learn, to internalize, that he is the one to do this job. That he is important, a part of something — just as he is now learning that he is part of a team. He needs to shoot for a basket when he gets passed the ball. That light went on at the State Games this winter. So my thinking is, you get the lights to go on by flicking them on and off a whole lot. You give him experience after experience — long or short, go for miniscule victories, see victory and triumph in the tiniest steps — so that he can store that in his repertoire. From repertoire to resume. Isn’t that what we all need to do to grow up and take our places in the world? But it all starts with just the right kind of experiences and exposure. Fearless exposure. Exposure that is happy with baby steps.

“Declare victory, then get the hell out,” as Ned says. But then, as soon as possible, go back in.


This isn't the best written article — but maybe there's a model for you here. It's the story of a woman with pretty involved autism who has a unionized office job. Because it's unionized, it pays enough for her to afford her own full-time job coach. For a while, I kept seeing her parents listed in local autism conference brochures as speakers (though I never made it to any of those conferences).

Ohio Mom

— added by Anonymous on Sunday, August 30, 2009 at 10:53 am

Hi Susan,

I was in Glacier National Park in Montana on vacation and it was beautiful. It would be a lovely place for your son to work for the season (May 15 to Sept 15, I think). Your vision is a good one – there were so many extraordinary young people working there on break from college. Americorps could perhaps match you with students interested in teaching or social work who could share the role of his job coach!

Mary Ellen

— added by Anonymous on Sunday, August 30, 2009 at 12:58 pm

Have you considered farming? That's one of our concepts. I know there are groups in Massachusetts working on starting something — it could dovetail nicely with the boom in community supported agricultural operations and urban farming in general.

— added by toadysmom on Sunday, August 30, 2009 at 10:11 pm