Our autistic son has an ongoing problem: he scratches himself. We can’t really talk to him because he doesn’t have the language, and his understanding of basic hygiene is dubitable, in any case. I don’t think he would be able to control himself even if he understood why it’s important not to scratch. Autistic kids are very impulse-driven.

And of course, on top of that, he has sensitive skin that probably itches more than other people’s. Even when we apply various creams, we have to be careful. Maybe you apply too much and something stings, making it worse, but we don’t know that either because Michael can’t tell us. His communicative abilities aren’t developed enough to tell us such subtle things. And that’s been a challenge since he was very little. He’s eight years old now.

It sort of happens in periods, I guess. This spring wasn’t so bad in that regard. It only started after the summer—this year’s cycle of scratching.

When you are in a chronic state of emergency with regard to your child—not just about this, but about everything else he does as an autistic child—the feeding therapy, learning to socialize, learning to communicate, getting the right school, trying to ensure he has a future even if he never develops the capacities that normal adults would have… when you have to deal with this, and you have too few resources, then even if you weren’t already paranoid, you will become paranoid. You’ll be in this heightened sense of emergency all the time.

He had this scratch on his cheek for three weeks that sort of opens and closes, even though we apply various creams that are supposed to help healing. I believe now there is some scar tissue underneath, which has made it a bit harder, and it’s also a bit reddish, but not too much, I guess. If you push down on the skin, the blood will flow away, so at least it doesn’t seem to be an internal infection or inflammation. But, you know, there is probably some inflammation around the puncturing of the skin.

And recently I noticed that there was a little bit of a top on one of the lesions, and that made me think emergency thoughts. Because, you know, three years ago we had him operated on for a boil, and that started like a lump under his skin that just grew worse and worse.

I’m pretty sure that this is probably some scar tissue combined with maybe some infection. And of course, that could become a boil if it becomes trapped. But for now, it seems like it’s open, so I guess we can apply some disinfectant cream. I have to talk to the dermatologist sometime today.

But of course, it is in the back of my mind all the time. You know, what if this becomes worse? And when we have this particular issue dealt with, one way or another, then there will be another, and another, and another. I’m just not… I need a way to deal with this on top of all the other problems. And I don’t know what that way is.

It’s like you have this… the skin is sort of a micro-universe of those constant worries. And they take up a lot of time and energy. And I just feel so sad and despondent inside that it’s come to be like this. You can’t have one fucking normal day where you don’t have to think about these things. You can just be happy and, you know, go to the movies, enjoy a good movie, and be happy about that. The people who are able to do that have no idea how privileged they are.

Even if we have some quiet days, you know, there’s always the baggage. There’s always the thing you drag on in your mind. You know, when is the next thing going to happen?

And I guess that’s part of the job of being a special needs parent. And I don’t know how to deal with it. There have been periods where I felt that I couldn’t do it anymore. Then I’ve had to do it anyway. And my husband, of course. And our other child, our daughter. Guess it’s hard on her too.

So what am I saying with all this? I really don’t know. I don’t think there’s any ending to this particular tale. I mean, there is obviously no ending, because, you know, it just goes on and on. That’s what the tale is about. It’s about a situation that goes on and on.

But what I’m trying to say is that when I talk to people, I often try to round it off with something hopeful, something cheerful, or, you know, as realistic as I can be while looking at some of the bright aspects. But I don’t feel like that right now. I just feel this big empty hole inside me and I wish that someone could just come and take it away. And I could get peace, just for a little while, in my mind.

Yeah. So I guess that’s how this tale is going to end. That I wish I could have peace. And if that’s a rotten ending, then I agree with you totally. It’s not the ending I want. I have to make a better one tomorrow. That’s something I have to do. That’s a mandatory task.

But maybe tomorrow will be the same result. I don’t know.

I have to keep trying. I have to keep trying. Until one day.