Susan Senator

I guess I have to resign myself to the fact that there is always going to be some guilt and sadness around the decisions I’ve made for Nat. As I say this, I already can hear people rushing to tell me that it is the same for all kids, autistic or not. But no, this is different. Remember, I have two other neurotypical sons and this is different.

It’s different with Nat because he has very little say over what happens to him. No matter how conscious I am of his personhood, his adult self, his wants and needs and skills, because of his communication difficulties I have to make his decisions. I ask and I ask, contort the questions over and over to determine how he really feels about so many things, but often I don’t feel confident that he has really understood me or answered in a way that means something to him.  Nat’s brothers, on the other hand, can listen to and process what is said to them, and they can articulate questions that bring them answers to help them with decisions.  Even though Max so often cannot seem to plumb the depths of his feelings about something, I still feel that he is aware of what is being said to him. Sometimes I think he chooses not to make the effort to figure out how he’s feeling or what he thinks of something. That’s his way; he goes with the flow. But I don’t often think of Max as being buffeted by other people’s will.

Actually, as I write this, I’m realizing that maybe I do. Ever since Max was a little boy I have worried that he is too passive. From the time he was a toddler, he was the one who would yield to others. The bossy baby on the playground would always end up with Max’s toys. He would hand them over rather than fight, looking at me for answers. Why, Mommy? Why are they mean? Or was he saying, It’s okay, Mommy. I don’t mind. As he got older I worried about the same thing, in more complicated ways. His friend J seemed to tease him too much in kindergarten. His friend N was a subtle bully. His girlfriend H was very strong-minded and seemed always to get her way. And of course over the years Nat hurt him but still all his life Max only hit him once — with a toy hammer.

And yet, every time I would raise this issue of passivity to Max, he would give me this half smile that seemed to be conveying sympathy — for me. It was as if he felt sorry for me that I was so hung up on what other people did. And he was right. I remember asking him for advice sometimes — probably this was inappropriate but he seemed so wise and content, more than I ever had been at his age. I always kept it general, never mentioned names, but in reality I was trying to get his opinion on something that had occurred between a friend and me. And he really truly did help sometimes.

Over time I have come to realize that this quality of Max’s works both ways. On one hand, he may end up following more than leading. But on the other hand, he is so beloved, so respected and sought after by his peers and others, that it works for him. And really, he is a leader, though a reluctant one. At high school and then at college he founded clubs because he needed there to be a photography club and a Dr. Who club. He is just as much an older son as Nat is, because they are in parallel tracks, each striking out on their own very different adult lives.

And yet there is sadness for Nat because he is so much more passive that it pains me. It scares me. I can only hope that those he encounters, those entrusted with his care, will not take advantage of that. I stay involved in his life to the maximum, meeting and forming relationships with most of his caregivers. But still. And anyway, it is not really that fear that I’m talking about — his being a victim of a terrible crime — it is more on a day-to-day level, that I’m afraid he does not have much choice in anything he does.

And again, is that so bad? Don’t most adults have to work at jobs they don’t really like, are most marriages just what people want them to be? Isn’t life all about compromise and not getting what you want, and living with that as gracefully as you can? And who does that better than Nat?

But it is different for Nat. Because I don’t know if he even can tell himself what he wants, let alone others.  And therein lies the rub. The damn spot will not out no matter how much I rub.