Susan Senator

I remember once, when I was in first grade, Mrs. Newman had us write all the numbers up to 100 and beyond. I can see the lined paper in front of me, and the fat pencil with its silver rounded match-head size tip gripped in my chubby hand. I wrote the numbers, “1, 2, 3..” I thought ahead and realized that I did not know what was after 100. Mrs. Newman was mean and so I knew I could not ask her. Everyone was writing their numbers and I asked to go to the bathroom. I left the room and just hid outside the classroom door for the rest of the period, my stomach in knots, because I just did not know those numbers and there was never any help, anywhere.

I still hate numbers, math, my old school, and especially that feeling of not knowing something everyone else seems to know: that feeling of being cut off from the others, floating, looking in from the outside. Loneliness, stomach ache, desperate to go and cry.

I was lucky enough to be able to arrange my life so that I am rarely ever in that position anymore. Because I still hate to ask for help. It’s amazing to me how quickly that teary choking feeling rises up when “I don’t get it.”

Most people probably don’t like to admit they need help. I guess there is shame that gets attached to it somehow. So I wonder how someone with a disability, who often needs help, feels about this. I wonder how Nat feels about his dependency on others.

I also wonder how Nat feels about the fact that so many people around him assume he needs help. This came up recently at a medical office, a practice I knew a lot about and was considering for Nat. I liked the way they were trying to think about adults with autism, to offer services beyond childhood.

Yet immediately I had to fill out paperwork that was all about “my child.” His year in school. His classroom therapies. His siblings, anyone else “in our home.” Nat is 25. He’s been out of school for years and he does not have therapies nor does he live in our home. Okay, I filled it all out anyway. But then the nurse came and chirped “Nathaniel?” and off we went.He was asked to take off his shoes, and asked if he could take off his shoes himself. He could. “Great job, Nat!” He was asked if he could step on the little red footprints to be weighed. He was congratulated for getting that right. He had to get his blood pressure taken, “This little band is going to squeeze your arm!”

At this point I wanted to squeeze her head but I said, “Oh, Nat is fine with being in a doctor’s office,” and I said it in a trailing way that invited Nat in to the conversation. He said nothing, but I felt that at least I had opened up the circle for him.

Similarly, when we were meeting with the doctor, I got ready to work out how to ask and answer questions about Nat with Nat right there in the room with us. I want to include him, but I know that he cannot always/often access the accurate responses about his health and life. My solution is to listen to the doctor’s question about his sleep habits for example and then answer, saying, “Nat, I think you sleep well these days, do you?”  Or about diet “Nat, you like most food, right? What did you eat today for lunch?” I try to give him a way into the conversation.

The doctor was better than the nurse had been but there was still that cringing moment when she said, “Great job, Nat!” after he’d answered a question, as if he’d discovered the cure for the common cold. I wanted to ask her, “How would you feel if someone squealed, ‘Great job!’ to you like that?” But I didn’t. Instead, I tried to show her another way. At the next opportunity when Nat responded to something, I said in a normal voice, “Nat, I like the way you’re talking to us.”  Just a small noticing, then we just moved on.

It’s hard enough being unable to keep up with everyone in the room — especially when they are talking about you. But Nat doesn’t withdraw in shame like I did/do. Nat just soldiers on,  listening carefully though appearing “in his own world,” talking to himself “stereotypies,” as the doctor put it. “Expressing himself,” as I put it. Thinking his thoughts.

But nothing proves it to you until that smile of his breaks loose all of a sudden, and his eye flickers at yours for an instant. Seductive in its powerful intelligence, he is almost winking at you across the room. If you are one of the lucky ones, it will stop you cold, and you are humbled.