Susan Senator

I picked up Nat for Special Olympics State Games this morning and I noticed he had a red mark on his cheek. His caregiver thinks it happened from shaving, and so do I. She likes him to shave much more often than we did; Ned and I are terrible with that kind of grooming. It comes from years of choosing our battles, when so much having to do with Nat was hard, and so it felt like stuff like brushing hair could take a backseat. Toothbrushing is cursory, shaving is spotty, flossing — forget it. Yes, that’s right. I’m not proud of it, but something had to give sometimes. I do doctors, dentists, and group homes but I just can’t do everything.

That’s why I didn’t do The Diet for Nat. I tried, but totally half-assed, like for a day. I never did Auditory Integrated Training, either, or neurofeedback, or, God forbid, chelation.  Nat did take iron for a long time because his lead level once measured just a tiny bit higher than acceptable. But this was the traditional, long-approved medical treatment for lead, overseen by his pediatrician. Nat called it “irion,” and he said it smiling, because he could sense my tension around it — my guilt that he had to have it. Vile stuff, mixed into his juice.

Sometimes people still tell me about stuff that makes The Symptoms go away — the most recent thing I heard of was a particular parasite, a good one, that produces something that does something. I’m not being flippant. I am lazy and skeptical and tired. And guilty. I really didn’t try many therapies for Nat because it seemed like what if you did it and did it and did it and nothing happened anyway? You contort yourself for The Diet and then it yields nothing but nebulous, subtle stuff.  You get all the charts set up for your Home ABA and you follow through exactly one day. After that, it’s one big slide back into I can’t take data I’m just trying to live my life.

So what I have always done are bastardized versions of everything. I am the queen of The Half-Assed. I would do ABA only in a natural way like showing him the reward a few times a day so that he would be reminded at times when he was not doing the undesirable thing. In our case the undesirable was destroying stuff or hurting us.  The idea was to catch him at being good, and reward those moments. Do you know how difficult it is to try to find a moment when you’re not pissed off at your difficult child so that you can genuinely compliment him? But it worked — or maybe it didn’t. How the hell do I know why things got better? Maybe he just evolved out of it. For the longest time I credited his meds with damping down some of his excess energy that led to mischief/trouble. More and more I see his meds as part of the problem. I want to wean him off the stuff, but it’s hard to be systematic and harder to be courageous because there’s always the fear that aggression will return.

Those who judge autism parents feel that we should devote our entire lives to figuring things out, like why the aggression occurs — and we should, of course — and not simply medicate, or de-glutenize or ABA-ify. Yes! Of course. But how can anyone know when we can be done trying? Why, for instance, does Nat not use his iPad? Is it because as always Ned and I are not systematic enough, too half-assed about taking it out and showing him stuff? Or is it because we just know that he is not interested in it. That for Nat it is not exactly about inability to communicate; it is more about a lack of desire to. And sure, we can expose him to it constantly, make a true concerted effort, and then maybe eventually he will be so familiar with it that he will use it. So why don’t I do it? Do I have some kind of sick desire to keep him disabled?

Of course not. But do I have some kind of sick desire to have free time and also to let him be? Yes. But if I were not so selfish, would he be like my friend Tammy’s daughter Carly? I don’t think so. I think Carly wanted to talk. I think that Nat either doesn’t or it is just too complicated for him, and he knows that. Sometimes I believe, or feel, that Nat does not always want to be in the down position with people, the one who’s less capable. And talking puts him at a disadvantage. All the nuances, the noise, the expressions, the damn eyes. I feel this. He, like all of us, wants to be great at stuff, even if he doesn’t quite know it, and so I think he just pulls away from talking. I think he likes having his own language that he can control. With his self-talk, he can let me know what he’s thinking about sometimes if he chooses and other times he can guard it, or say, “NOOoo, Mommy will go away” when I try to guess.

So, I don’t know, I kept looking at that red mark on his face and feeling bad. One more thing that I can’t figure out, one more thing he can’t tell me. The caregiver didn’t seem to really know why it was like that. I know she cares, but she didn’t know why it was red. This has happened his whole life; school people telling me they don’t know why this or that happened. “Out of the blue,” was the phrase I hated the most in regard to Nat.  But really, how much effort is anyone, teacher or parent, supposed to put into this?

I had Nat come upstairs after dinner. I told him I’d get a warm washcloth, and he’d sit with that on his face. “Sit on the toilet while I heat it up, Sweetheart,” I said. So, being my literal Nat, he started to unbuckle his pants and to lower himself onto the toilet — just because I had told him to sit on it!! Oh, Nat. We still have so much ground to cover here. “No, Darling, I mean, just close the lid, use it as a chair.” I laughed a little, because you have to take it where you find it.

I know I could have given him the cloth to hold on his face, but I stood there and held it for him. The little bathroom was suddenly a quiet white space.  I looked down at his wild, unbrushed hair, and I simply mothered him.