Susan's Blog

Tuesday, July 25, 2017

Playing for Real

There are aspects to taking vacations with Nat that are unchanging. Because of his chronic anxiety there is always the need to think ahead and to plan so that he won’t be upset. There is always the spectre of his getting upset in the worst possible places like the beach or restaurant, or a store. Even when he’s not upset he’s very pronounced in his actions, his activity; he invites staring. Yes, it’s wrong for people to stare but they do. So for all of his life that’s one of the biggest things that has not changed: my discomfort of being with Nat in public.

My discomfort does not overshadow my joy in him, however. For the most part I feel great pride when I’m with him in public because he does not act out, and he really keeps himself together. Even when he’s doing his stimmy stuff he is so gorgeously outre, so vehemently himself, that I just feel so much love and admiration — along with a deep burning sense of outrage that the public does not. Plus I understand that the stims have a real purpose:  he is trying to organize himself, he’s trying to be comfortable in a world that greatly overstimulates and confuses him. His stims make him feel good, so they are good. I wish everyone else would understand that, but I think that if we just keep on taking him out there and making people familiar with what he does, maybe someday stimming will be much more widely accepted.

Certainly the worst part of being on vacation with Nat is how uncomfortable he is because of the necessary lack of routine. At some point, probably 10 years ago when he first started to live in group homes, we decided to have Nat stay with us on vacation for shorter periods of time than the rest of us. This is one of those terrible choices that we had to make and we still have to make in order to have a good time on vacation and please everyone — including Nat. This is not ideal but it’s the best I can do — don’t fucking judge me. This time, when he went back he seemed confused that we weren’t going back too. He took out our suitcase and wanted us to pack our clothes. He got more and more upset, hitting his head, talking loudly. I tried to get him to talk — so did Ned — but it’s hard for Nat at these moments. I felt really bad that I hadn’t given him the choice to stay the whole week. But it was too late to change the plan — we didn’t have enough meds for the whole week. And — ugly honesty —  I needed a break from the sheer effort of keeping Nat happy on a vacation.

We talked simply and to-the-point with him about what was happening, going over the rest of the week on his calendar. And he saw that the salient points were still the same: kayaking with day program tomorrow; Mom and Dad come get you Saturday.

I was/am so sad about having upset him and also giving him a shorter vacation. Eventually I told him that he gets too anxious on a full week of vacation and that it’s good that he has activities at his day program like kayaking which he’s going to do tomorrow. I said some people can’t do a long vacation. I tried hard to tell him the whole truth. I will try to figure out a better solution next time.

Even if I screwed up his departure, there are good things I did with Nat on vacation. I tried to figure out something that we can do together everyday that I consider quality time. On this vacation we rode bikes to my parents house on the cape and back everyday a six and a half mile ride that was really nice. However hard it is to ride with him on roads and to always be looking in my mirror to be sure that he’s okay I have this raging pride in the fact that he does so well on a bike. He goes as fast as he can but if I ask him to slow down he slows down he stops at stop signs if I do he knows the way I let him take the lead as often as I can. I want to yell out loud “this guy is autistic! Really disabled. BUT look and see what he does!!!! Can you, you staring judgemental asshole?”

Bike riding with Nat is a very conscious activity, where hyper-vigilance is required. Still, I can relax enough because I am confident in his ability to be safe. But there’s another kind of thing we do together which is the best, when we just fall into an activity. We just play. It happened when we went to Disney together. It happened when he was 12 and I was tired, and he was annoying, and we were on the couch together. On this vacation it happened when we worked on a jigsaw puzzle together. This is something he and I never do. And it was a significant size: a 300 piece one. That evening I found myself craving to do a puzzle. And without thinking too much about whether he’d say yes or know, without anticipating disappointment, I simply invited him to work on it with me. When I really want to do something with him I get strong and confident and he knows it and he wants to do it with me. He knew this with the biking and he knew this with the puzzle.

I don’t know what it is that I do that makes him aware of this and makes him feel like he can do it — yes I definitely feel like somehow confidence is a part of this a part of his communication challenges. His social reluctance feeds on his perception and his decoding difficulty, and vice versa. So if I feel confident in myself and in him he does too and then he wants to do the thing with me. Ah, but not always, and there’s the rub.
The beautiful things that I get to do with Nat are all the more special because they’re often surprises. I don’t realize at first just how strongly I want him with me. And I get surprised when he wants to.

But there we were picking up the pieces, turning them this way and that, trying to fit them in. Occasionally he would just look up and stare at me. Stare at me. I tried not to make a big deal of it. But I felt so flattered. I felt like I mattered to him. Stupid neurotypical me needs so much more feedback than I get with Nat. But that night, there it was. Was it as simple as I wanted him with me, no strings attached, and he then wanted to be with me? Oddly enough, the next day when I desperately tried to get it to happen again, he refused. All he wanted was to crumble the puzzle up.

So what made that night happen that way? Is it because neither of us overthought it? Is it just that we have to kind of sneak up on each other?

Monday, July 3, 2017

The Third of July

July 1 was my wedding anniversary. July 3 is an anniversary, too — but a terrible one. It’s been exactly a year since Nat came home with a big bruise on his chest and we then discovered he had fractured ribs. The state investigation yielded no clear findings, no evidence of abuse or neglect. We will likely never know what happened. And we have to grapple with the painful fact that Nat could not or did not tell us that he was in pain.

I had him come home last night for a special cookout because I knew he was going to be at his day program today and then at his group home for the Fourth. They are planning a cook-out with two other houses, so it sounded like it would be a pretty good celebration for him. We are not doing much of anything here, so I figured it was okay to have him be there on the holiday.

But family holidays should be family holidays. Even when the family doesn’t have a clue how to celebrate. Ned and I were going to go on a bike ride together today and Nat would probably enjoy it, but he is at his day program.

Driving in the car with him next to me, hearing the rise and fall of his self-talk, I felt the pain ball up tightly in my chest, but I told myself not to cry, not to show it. Not until I’d dropped him off at the day program. Why why why do I feel sad, I wondered. So sad, and yet he’s going to be having a nice enough day at the day program. And a cook-out tomorrow at the group home.

What makes him happy? I wondered this as I always always do. Looking around desperately for something that would connect us, I glanced at the radio and switched from NPR to Magic 106.7 — his favorite. I should always play it when he’s in the car but I can’t stand it. This selfishness I allow.

We were early at the day program and he said, “No early,” because he wanted to go in — either because he likes it or because it is the routine — (or both). So I decided we could spend a little time at a nearby farmstand with a muffin. He ordered it himself at the counter, the guy understood and did not make me corroborate what he thought Nat had said. One small victory. Nat ate the muffin in the front seat, coating his lap with a soft yellow layer of crumbs.

He was greeted by the assistant program director when it was time to go inside, and he walked in without looking back. I had to call him back so that I could get a Goodbye Kiss.

Is it okay to bring him to a carefully-manufactured adult life, and not keep him with me? On this most terrible anniversary, I cannot feel it is. I kept driving, though. Some part of me must feel that this is okay for him. He can’t live with me forever. Although he did for eight months last year after we discovered the injury.

The plan is for him to live very very close to me and be an intrinsic part of the family life while also building a life apart. He is doing that, but is it a happy life apart? The rolling cadences of his self-talk seem smooth but quiet. I suppose that’s good. Anxiety, for Nat, is clear and sharp as broken glass. So he’s not anxious, right?

But I can’t escape the press of sadness against my eyes, so at odds with the bright sun of the Almost Fourth.

It’s the Third of July, a date that now might always spill darkness over the Fourth’s majestic lit-up night skies.