It’s been a setback weekend. And it’s not even bedtime on Saturday…ye-ay us!!!
As I type this J is sitting in his TV room wearing a beanie that has an icepack attached to it. This is because he has a lovely goose egg that starts to go away and then the SIB starts again and…hello, Mr. Goose Egg.
Since this is on the same side where the hand that is evil and hit hims is located, he cannot hold it without feeling that it’s a pointless task because it’s boring, and he then puts the icepack on the table and the goose egg doesn’t get any smaller (but the coffee table gets nice and cool.)
I am a never-say-die person so I took a beanie I’d made a few years ago, and I laced a ribbon through the band, and then slipped the icepack in, and fitted it to J’s head. The initial reaction was “no…I want to hit myself instead of this,” but then he realized it was soothing and he’s been walking around wearing it for over an hour.
But the hitting continues. It happens as soon as the wrist stabilizer is removed. It is a compulsion. We know this. It doesn’t make it any less difficult for anyone involved.
The one thing I have come to realize is that the Charlie by Revlon commercials of the late Seventies lied. No, I can’t have it all. No, I can’t look sophisticated while doing it. No, this is not just going to “go away.”
After a grueling day, which shouldn’t have been grueling, I am going to take a different tack on Monday. Instead of playing loosey-goosey with J’s time and letting him be a little in control, I am taking it all away. For the time being, at least. I think he needs us to focus him more than he has been, and that’s what I intend to do.
Dada and I talk a lot. We always have. We talk about politics, the weather, our children, movies, music, and how to handle all the curve balls that life insists on pitching at us. Today we talked about things that scare us, and one of them is that we are fully aware that we are doing this alone, and we can’t do it alone. That it is being done in this fashion is indicative of the fact that we ARE alone.
So…what do we do?
We make a new schedule. We drink more coffee. We sleep less. We work harder. We concentrate of the important stuff and we let the tiny things fall off like flakes of confetti. We trust that all this will work, and that we’ll get to the other side of this crisis before it gets to the other side of us.
It’s as simple as that. We cannot give up. We cannot give in. We cannot choose to not do what needs to get done and hope that it’s the right course of action.
No. We will do this. We will not figure out Autism, but we will find a way around some of its corners and bends because we have done it before, and it wasn’t easy then, and it won’t be easy now.
Maybe we’ll need meds again. Maybe we need to find someone to come in and clean the house for me. Maybe we need more pinch-hitters to come help so I can take a shower if I need one while Dada is not home.
I am a little resentful, and I know I shouldn’t be. A lot of people who said they’d be there for us have simply fallen out of the picture. I don’t mind this for myself as much as I mind it for J. These people promised him, tears in their eyes, that they would come see him, call, or he could come visit them. And then came the radio silence.
I know, and I want to reassure you that this is heartfelt and I’m not trying to be nice to myself, that people are busy, and that we cannot be, are not, should not be the center of anyone else’s life. I know this. We have been doing this basically by ourselves for a very long time. But…
People forget that J understands more than he lets on. Granted, J can be obtuse about abstract things, but he does understand when you say “I promise” or you tell him you’re going to do something. When people cry and tell him how much they love him, and that they’ll come see him and then they don’t…it hurts. If I tell J that we’re going to the movies, and I have to cancel that because he has been rude and that’s the consequence I’ve used to make him correct his behavior, I tell him how very sorry I am but we’ll have to do it some other time. It makes me feel like shit, but if I’ve said “if you do THIS when I’ve asked you to stop, I will have to do this other thing to show you that your behavior means something.” And, yes, it pisses him off and he doesn’t always understand WHY I’m doing what I’m doing, but I reinforce this in several ways (for example: PECS Prison…it has a window and everything, and J knows that if I say “we’re not doing this because of that” the PECS card goes in that envelope…sadly waving at us through the window…)
If I tell J “I will come in here in ten minutes and hug you and kiss you,” I go in there in ten minutes and do what I promised. If I say “well will do our exercises in half an hour,” I am in there in half an hour. J remembers these things…and if I am coming down the stairs to get him and he knows it’s time for something, he meets me halfway. He waits for Dada to come home; I tell him beforehand if he’s going to be late.
So, in a way, J had been waiting for some of the people who cried, promised, insisted (while looking him in the eye) to come around. And they haven’t. All I am left wondering is if they thought he wouldn’t take to heart what they said to him. TGG is on J’s shitlist because he left to make his own life one day, and didn’t really sit with J to explain. WE tried to, but TGG didn’t, and J now acts like “ah…you’re here…how nice of you.”
I don’t know if my strategy will work, but it’s the only one we have right now that seems somewhat viable. Less sleep, more coffee, less loosey-goosey, more structure…
Wish me luck…coffee bean donations are not necessary…yet…