Susan's Blog

Friday, January 8, 2010

I Guess It’s Working

I admire Nat for his ability to stick with his jobs, to find what is good in them and to keep going. I don’t know if he feels like he has no choice, though. I don’t know if he knows the concept of choice. Sure, you can ask him to choose between ice cream and oreos, and he will, (or he’ll cleverly say, “Yes.”) But to know that he can protest or question working? The thing is, when you let yourself believe that someone may not understand much, you can drive yourself crazy wondering what he does know.

Why can’t I just decide what I think Nat knows and just leave it at that? For that matter, why can’t I decide something and just leave it at that, without looking back and revisiting?

When I give my “Making Peace With Autism: Family Life, Autism, and the Pursuit of Happiness” talks, I discuss my family’s arc of coming to terms with autism: how we went through wondering and worrying about what was going on with Nat; how we then learned and grieved and learned some more (the learning curve, or really, the learning mountain); and then, how we accepted and connected. Recently I have added the concept of letting go of the child and coming to terms with the adult he is becoming.

But am I truly coming to terms with Nat’s adulthood? If I’m continually questioning what he knows or doesn’t know, if I’m continually squeezing myself into his brain and seeing the world as he might, am I still too wrapped up in him?

I did let him go to some degree when I moved him to the residences at his school. It really seemed like an opportunity for him, to learn that other people could help him and that his Home wasn’t the only place he could live. But I have worried so much about what he makes of this change. The way I think of Nat, almost anything goes! I torture myself by never allowing an end to a phase.

I wonder if other people just come to a milestone and they don’t keep tripping over it. I wonder if discussing the arc of a family’s autism understanding is relevant to others. The way I handle that is I tell my audience that they should take home what is relevant and throw away the rest. I have no agenda to convince you to view autism or family life the way I do. I’m just telling you about my experience and what I’ve learned.

Maybe the work experience is different for Nat than it is for me. In the end, the only job I’ve ever felt truly comfortable with is writing — which I’ve been doing for 25 years (if anyone wants to publish any of my novels, let me know!). I’ll write anything for anyone. I’m a writing slut.

How about Nat? Is he a pizza-box slut? He is the unstoppable box-maker. He has risen to his old high levels of production; this past week he was back to earning his soda (he also gets a paycheck but the soda is more relevant to him). So even though they have really faded back the job coach, he is now able to work as he used to. One day — OMG — he may not even need a job coach. Kinahura.

So he must get it. He must like it. Or wouldn’t he be having fits?

It is so hard to realize that this is who Nat is now: a mensch who is game for just about any new experience, whether it’s living somewhere else, or work, or games, or friends. Little Nat was so different, so timid about everything. So uninterested in new things, toys, people, places. I never imagined he’d be living in basically a dorm, and working four jobs. Maybe Nat has learned a kind of confidence because he’s had so much success as a teen and a young man. I hope so. And one day, maybe I’ll know so.


I'm no expert, but it sounds like he IS a pizza-box slut! Now that's confidence! You go, Nat!

— added by Brenda on Saturday, January 9, 2010 at 2:40 pm

From what I know, Nat is certainly able to express displeasure… So the fact that he isn't, means to me that he's AOK! I am glad to see that you are enjoying his successes. — Cathy in CT

— added by Cathby on Sunday, January 10, 2010 at 7:40 am

Maybe Nat is just growing up:) I never thought by daughter would end up working for the same school I work for and somehow be living on her own. I mean, I knew she probably would, but the odds on some days were not so good. And now, she only needs money now and then and even sometimes offers (not that I take her up on it much) to pay it back. So Nat is doing what the rest of the world is; he is unique in his needs and worked harder than most of us has ever had to to get there, but there he did get!

— added by michele on Sunday, January 10, 2010 at 10:00 am