CARRIE, October 2017:
This is morning. It is not something I would call a prison, and yet sometimes, it’s hard not to. We don’t know what’s going to happen when we have to take care of our son for the rest of our lives. Will he be able to handle himself? What about money? What about friends, loved ones, after we are gone? It’s as simple as that. That’s the overall equation. The mornings are small echoes of that, I guess.
This morning, I woke up at five o’clock. Jonathan was sleeping on a mattress on the floor beside Michael to make sure he gets through the night. Michael usually wakes when he kicks off his duvet, so one of us has to put it back on him. If he wakes up and starts getting agitated, we might not get much more sleep that night, so it’s for the best. Sometimes Emma sleeps on the floor beside Michael instead and corrects his duvet during the night when he kicks it off.
But this morning, it was five o’clock and Jonathan couldn’t get Michael back to bed. He had to get Michael up from the mattress on the floor, take him to the bathroom—where I’m training him to pee immediately when he gets up because he usually fills three diapers very quickly and makes a mess of his clothes. He has to learn it at some point, even though it’s very difficult for him.
Jonathan prepares the bathroom, opens the door, and turns on all the lights. Then I set up my laptop in the kitchen, which is the next stage in this very meticulously planned journey we have to follow for Michael in the mornings because he’s so agitated when he wakes up.
I don’t know what it is about autistic kids and transitions. Falling asleep was an issue before we got the medicine. Maybe it’s their difficulty with transitions generally, or something about their internal body sensations being off. They wake up feeling wrong somehow.
So we have to prepare everything meticulously, or Michael will start acting up. He did this morning. He wasn’t in a good mood. After he finished peeing on the toilet, he went to the table. We haven’t figured out how to get him to wipe himself yet, so I do that by the table before he sits down. I change his diaper, and then the little Chromebook is set up and ready to go.
Hopefully, there are no problems with the connection or the internet. It has to be on the exact page of YouTube that he knows and it has to be minimized to 25% zoom for some reason. I’ve given up trying to get him to use 100% zoom. I have to assume his eyes are all right because he’s pretty good at spotting things when we go outside for a walk.
Then I have to prepare his breakfast, which still consists, after a couple of years of feeding therapy training, of three bottles of milk, water, and juice. Then there’s the bread, which is a special kind I can only get at one bakery downtown. He eats a little bit of other types of bread, but very little. So I have to get that ready, a slice of that, and then if he asks for an ice cream, he gets it because that will get his blood sugar up. That’s the only thing he eats aside from the bread. He doesn’t eat the cone; he just eats the ice cream off the cone. Well, that’s not entirely true; sometimes he eats the cone, but it’s very rare.
I know it sounds like we’re feeding him junk, but that’s all he’ll take in. The worst alternative is that he stops eating, so that’s what we have to do.
Oh yeah, and then I forgot to get the small rubber things—we call them chewies—out of the freezer. He likes to fiddle with them and chew on them. The therapist at school said it’s good for the muscles in his mouth, which aren’t trained very well. So it might also help him eat if he trains and desensitizes those muscles. But he likes them cold, that’s why they’re in the freezer. They’re made of a kind of rubber that’s supposed to be safe for children; I think it’s silicone or something.
I got a bit confused right now because it’s so early and I didn’t sleep well either. The damn thing is, when I’m in my own bed, even when my husband isn’t there, I sometimes sleep poorly. And that’s awful because it was my turn to sleep well tonight.
What I wanted to say about the chewies is that he can have something to fiddle with so he doesn’t scratch himself. He’s got this tendency to scratch his skin, and that can cause infections. That’s bad because he’s a very poor patient. He can’t swallow pills with antibiotics. We can barely get him to keep a band-aid on without tearing it off immediately, and sometimes he does anyway. There’s been a bit of a problem, but this summer has been especially bad with the scratching. We’re trying all kinds of creams and periods without creams and so on. There are some periods where it doesn’t happen, but other periods it just comes back.
I use so much energy on that. I’m more fussy about it than Jonathan, of course. He’s a state trooper with the Yuma department, and he’s out there, maybe sometimes pointing a gun at people, so of course he doesn’t have the bandwidth for obsessing over Michael’s scratching. But I’m homebound, at least right now, because work options are terrible, and so is my ability to go to work, except maybe for weekends, which I need to rejuvenate, and Jonathan needs them to rejuvenate too.
So we really had to accept that our family has helped us with some money recently. I just don’t feel anything about it anymore because it’s necessary to survive. We have to not work all the time and we have to be able to take care of Michael.
Emma gets up, and she’s two years older than Michael. She just does everything herself. She’s very sweet in the morning and doesn’t make any fuss. Sometimes she helps me with packing Michael’s school bags. I have to pack a school bag for Michael with changing clothes because he pees in his clothes, diapers, his lunch box with his special food items, and this big thermal bag with milk and juice and water where I’ve put supplements in—the supplements I could find that don’t taste of anything. It always takes at least twenty minutes to prepare that.
When we finally get Michael settled, I usually have to go to the bathroom, but I can’t before I’ve dealt with Michael or he’ll act up. It’s the same with Jonathan. So we’re sort of standing there, trying to get to the bathroom first after we’ve finally made Michael calm. There’s a lot of stress there. And then we circle back and try to get a shower ourselves and try to give something to Emma, and then, of course, pack Michael’s bags.
It’s all very confusing. Maybe it sounds confusing when I’m telling it. Even though there’s a steady structure that we follow, it’s also chaotic. Or maybe chaotic isn’t the right word, because I know exactly what will happen at every moment, every beat, every second—whether I’m going to get to pee or Michael is going to act up or whether I’m just jumping around because I didn’t get enough coffee myself. I know all those things and reactions by heart now.
So that’s not the chaos. I guess the chaos is that we’re forced into this defensive posture every morning, following these very strict patterns in order to take care of Michael, and our own needs are really just an afterthought. Emma’s needs are an afterthought. And that’s the prison.
That’s what makes me think of prison, even after I’ve dropped Michael off at his special school and have a couple of hours where I can decide whether I want to rest and sleep or tackle those piles of laundry or work on his feeding therapy. It’s the feeling of no choice. In a prison, at least you usually have an idea of when you’re going to get out. For us, it’s life. We don’t know if we’re going to get out because we don’t know how Michael is going to be when he grows up, how much he’s going to need us.
Presumably, things will change for the better, and we’re doing our very best with the limited resources we have, but the fact is that we don’t know. And in a way, it’s a terrible way to live. Because what keeps you hopeful when your marriage is hollowed out and you’ve got this incredible responsibility and very few resources, physical or monetary? And you’re just in it for life, maybe, and your own dreams and hopes, the things you tried to do in your twenties, thirties, and God, soon forties… all the mistakes I made, I will never get a chance to rectify them and just live the life that I want because now I’m stuck here with this responsibility.
So how do you deal with that mentally? Most of the day you don’t. You just press on and make things work, but there are these times like now when I’m in between tasks and concerns, so to speak, and I’m just sitting here, my body sort of shutting down all by itself for twenty minutes or so before I have to do another chore, have to go shopping. I only have about two hours left before I have to go get Michael again.
And I’m looking out into the garden and thinking about this. There’s a fence around the garden; it’s not a very big fence, but for me, it’s like a really strong fence, you know, keeping me in here. And I honestly don’t know how to deal with this.
Right now, we’re in this period where a lot of things have been stressful again, and we’re just running on willpower and, you know, a supposed Call of Duty—that’s what Jonathan would say, something like that. I think that’s a game, but never mind. This is not a game, definitely not a game.
So how do I play it? How do I play a game where you apparently can’t win? How do I play that in a way so I feel that I can achieve something—something that’s not just meaningful, but also… I don’t know… something akin to reaching a kind of peace, I suppose? How do I do that? That’s the question.
But the fence around my prison is still there, just staring back at me. And there are no answers right now. I have to go out and do what I have to do and hope that if there are some answers, then I will find them later.
Just one answer, though, that has come to me after trying to summarize all this. It is that I have to make this not feel like a prison, even if I’m going to stay here. That is the first answer. Perhaps it is the only answer.
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