Susan's Blog

Sunday, February 16, 2014

I’d Like To Teach the World To Stim — in Perfect Harmony

The other day I had an email from an NYU sophomore asking if she could interview me for her Oral History class project. She wanted to know about mothering a child with autism. I told her that I’d love to, but that my son was now 24. She said that would be great anyway. She was down in New York, however, so we were not sure at that time how to proceed.

Then yesterday I was contacted by her project partner, Chris, who happened to be in Boston visiting a friend. Chris and I agreed to meet at my favorite coffee shop in town, Peet’s. Nat was home for the weekend, so I asked him to come with me; the interview was partly about him, so he should be there, too.

It was snowing really hard. I had to drop Nat off and then park, or he wouldn’t have been able to open the door against the hardened snow drift. We went into Peet’s together and found Chris, a smiling young man. Nat shook Chris’s hand. Then he went right to the glass case and started saying, “choc chih cookie,” before I had even gotten there. This was a happy development, however technically/socially incorrect it may have been, because Nat was so confident and was speaking up for himself without even being prompted! I did call him back to the end of the line, though. How can something be so right and so wrong at the same time, goes the love song, and it is also the song about Nat in the world.

Every time something like this get-together comes up now I realize either just in time or a little too late that Nat should be part of it. I can’t believe that I still have such a hard time thinking of him as a definite part of a get-together, rather than, well, luggage. That sounds horrible, right? But listen, to some degree, any time a parent has to bring a child along, it is a little like hefting more than you’d like. Until that child starts to grow up and become more visible, more there, he is more just cute baggage than anything else.

But Nat is not a child! Nat is 24. He is not luggage the way a toddler would be. He is 5’11” and very garrulous. No, he does not talk directly to the people we are with, but he is very much a part of the living, moving social noise of any gathering.

But: there was a time, and I still carry the trauma of that time, when Nat was highly unpredictable and scared me in public. It took years for me to get used to his being stared at, and also to realize that he was no longer going to try to hurt someone. He used to be so much less aware of what the outside world expected of him, and even if he did know, he did not know how to get the right behavior out of himself. He must have gone around with so much frustration I can only imagine it was the way third grade math was to me, but for Nat, it was every day of his life.

I need to remember that things have changed. I need to find a way to keep that fact with me, and bring Nat into every picture that is about him or that would interest him. He is a grown man and he seems so much more comfortable in the space around him. Certainly those around him get it better than they used to. They make room for his pointy widespread elbows, his faster pace, his sudden peals of laughter. He does not get stared at as much, or maybe I don’t notice it anymore. I’d like to think both are true, like maybe I now feel we are more deserving of respect, he and I, because of all we’ve been through together. Now he is a grown man, and a happy and confident one — albeit not speaking the language around him — and so people just see the man and they make room.

And indeed, we did find room at the long marble countertop against the cold wet window. I was in the middle while Chris asked me questions. Nat was on my left, scarfing his cookie and sipping cocoa with great animation. I think some of what Nat and I told Chris (in one mode or another) moved Chris to tears at times. Chris really got it. At the end of the interview I went to shake hands to say goodbye to him and he said, “Actually, I’m a hugger, so bring it in.” We hugged. Nat, however, is not as much of a hugger so in saying goodbye, he shook Chris’ hand, saying, “Hi Chris.”

As we walked back to the car, I tried to summarize the meeting because I was not sure if Nat knew why I had been talking so much about him to this stranger. I said, “People want to talk to me about you, Nat. A lot of people have little children with autism, like you. A lot of people want to know how to help their children be as great as you. You’re a really good person, Nat, and they want to know how to be a good person, like you.”

And we drove home through the heavy snow. Everything was just white and black, except the bright red lollipop stop light.


Do you think Nat understands that he has autism? I have never mentioned or tried to explain it to D because I think it would really upset him if he thought something was in some way “wrong” with him. He is always saying that he has “no issues”. Of course I guess someday he will have to know. Do you remember how old Nat was when you started discussing it with him? I kinda feel the same way as you, that I realize I’m enjoying going places with D cause he is a cool kid, and it’s no longer a chore to bring him into a public setting. So yay for that!! Sounds like a fun outing, I’m sure Chris got a lot out of it. Very cool!!

— added by eileen on Sunday, February 16, 2014 at 10:35 am

Hi Eileen,
I think I first mentioned it to him in his teens, when we were all watching “Rain Man” together, but that may be a fantasy. I at least wish we had mentioned it to him a while ago because I believe he has a right to know unique things about himself, but also to have an explanation for why things may be hard for him to do. I don’t know if he feels isolated or frustrated now but I’m sure he used to, before he understood the world better. Now he’s an old hand at it, and so I talk to him about autism. I often explain it this way: “autism is something that makes it hard for you to talk. I don’t have autism, and so I can talk easier than you. But you’re doing a great job.” That’s probably as confusing as anything else, but it’s the best I know how to do at this moment in time.

— added by Susan Senator on Sunday, February 16, 2014 at 11:15 am

Right now D has such a hard time seeing the big picture of things, that I don’t think he realizes things are harder for him then they would be for anyone else. He’s pretty verbal and he hasn’t said anything that makes me think he is aware. That being said, he does love gen ed and won’t even talk to the ese teacher he used to love and had for 4 years. I think he is afraid he will have to go back to her room. I think when the time comes when I do tell him, I will make sure to incorporate some of the blessings that autism has bestowed upon him, his great memory and attention to detail and artistic talent, stuff like that, so it won’t seem so negative. Don’t see that conversation occurring anytime soon, probably more like you first did with Nat, in his teens. BTW I love the title of this blog post. When I was in 4th grade, my sister and I sang that song in the school talent show. Electric guitars, maroon hot pants, matching blouses. There is a photo, somewhere!!

— added by eileen on Monday, February 17, 2014 at 11:24 am

Hi Susan,

I am glad that you were able to have this cool meeting with another family dealing with autism. I guess I don’t have expectations anymore when it comes to dealing with Charlie interacting with others, because he surprises me so much.

Recently I was contacted by a mom with a son about Charlie’s age and functioning ability. She asked if Charlie would like to be pen pals with her son. I really felt that it was way beyond his ability and since he HATES to write sentences, it would be futile. But I said we would try, without expressing my concerns, and gave Charlie’s address.

The first letter came, a single sheet talking about the boy’s favorite teams and colors and to my amazement, after reading the letter, Charlie wrote a full response. He used paragraphs, he talked about his dream car {which he plans to drive when he is twenty (!)} and asked the other boy about his favorite vehicle.

So we sent off his letter. Pen pals. I seriously never considered that he would be able to do that. Just goes to show, we never know until we let them try.


— added by Jan Bowser on Wednesday, February 19, 2014 at 8:31 am

Yay, Jan! and Yay, Charlie!!!! That guy will continue to surprise and delight us all.

— added by Susan Senator on Wednesday, February 19, 2014 at 12:58 pm