This afternoon was hellish. There is no other word for it. The morning wasn't any piece of cake either, but things really kicked into gear this afternoon. It's hot as, well, hell, about 98 and humid. Janey didn't sleep well last night, and although she slept in some this morning, we all are tired. I left to go to my therapist about 10:45---the one time in the week that is just for me to rant, as I tell him. As I left, Janey was screaming for a car ride. Freddy was staying with her. I told him if it got to be too much he could call me and I'd come right home (it's right around the corner). He was a trooper and handled her. When I got home, feeling refreshed from getting out of the house for once and having some time to vent, I was determined to do just what Janey needed to keep her happy.
She was no longer interested in a car ride. What she wanted, or thought she wanted, was for me to put on shows for her and then get out of the TV room. So I did that. In the course of about an hour, I changed shows literally about 30 times. Most of these times included tears from her when I didn't immediately understand what show she wanted. As soon as the show was on, she'd say "Go away!" and point to my bedroom. I'd go in there, and about a minute later, she'd come in with the remote for me to change the show again. If I said ANYTHING besides a very cheerful, chipper "Of course!", she would scream---the ear-splitting scream. One of the times I said "Okay" in a neutral kind of voice, just as an experiment, and that earned an especially loud scream.
About every third show, Janey asked me to cuddle on her bed with her. I did. The cuddles lasted at most 30 seconds. And then---back to the shows, the sending me away, the asking for a new show...
You might ask, very reasonable, why I let this go on for an hour. The answer is...I'm tired. I tried the more measured approach the last few days, the #3 approach I mentioned in my last post. I showed her a timer app, told her "just a minute" over and over, used "first" and "then" to explain...and it wasn't going well. To say the least. This morning, with my tiredness and hers, was the breaking point. Very often, just doing what Janey wants keeps her happy. She does ask to change shows, but not at that pace. She does scream, but not constantly. But today, whatever haunts her brain at times was in full force. I think it's OCD. The changing of shows and the cuddling for a second and the fact I need to leave the room---all rituals, rituals I think she is using to try to ward off the feeling that something is off, something bad is going to happen, something isn't right.
I know those feelings. I've had those feelings, so many times. I am on medication for those feelings. I understand those feelings---I have the tools and cognitive abilities to know they are a glitch, something off in my brain, a chemical mis-read. But Janey doesn't. To her, the compulsions, the rituals, are something that, when she's fired up, simply feel like complete necessities. And often, doing them for a while calms her. Not today.
After an hour, I was at the end of my rope. I turned off the TV and suggested a shower. That often can break the chain. Not today. Janey did want a shower, but she screamed all during it. She threw my iWatch onto the floor, the watch I was given as part of the Framingham Heart Study to track my movements. If it breaks, there will never be another one. It didn't break, but it hit the floor hard. Janey got out of the shower after a few minutes, still screaming. I was feeling shaken. I called Tony, to talk me down, which helped, but poor Tony, having to deal with a traumatized wife and a screaming daughter on the phone. For a long, long, long time, after I hung up, Janey screamed. I spoke to her as soothingly as I could, while literally praying for calm. I am fairly agnostic, but you know the saying about foxholes.
And then---Janey calmed down, for now. I put the TV on computer mode, so she could pick her own videos, which she is doing. She hasn't asked for anything during the 15 minutes or so it's taken me to write this. Just now she's come over and asked for a car ride. Traffic outside is backed up outside our house to the point that getting out of the driveway even would take a while, and I can't drive when Janey is volatile. It's too dangerous. So, she has settled for a walk to the store.
Why do I write this? It's not, as sometimes parents like me are said to be doing, to get sympathy. Raising Janey is my job, and my privilege. Sympathy is not something I need or want, not the kind of sympathy that says "Your life is so hard!" or "I could never do what you are doing!" Everyone's life is hard, and most everyone, if they happened to have a child like Janey, could raise them. It's not to try to get help. I've given up on that. The kind of help that would actually, you know, help, doesn't exist. Additionally, I'm pretty good at taking care of Janey, and today was almost more than I could stand. I would not put Janey or anyone else in the position of having to try to handle this kind of day.
Why do I write about days like this, then? I write so others living this life know they aren't the only one. I write because the most helpful thing ever for me is knowing that there are others like Janey, other parents like Tony and me. There are lots of people living this life. I write because that's what I do. I've always written---diaries, reviews, letters, postcards, stories---I'm never not writing. I write for the same reason others volunteer time or money, or talk to their congressmen, or run for office, or do research---because it's the way I can try to contribute to others living a life with a child with autism.
But I also write for Janey. I write because she can't. I write because she is an amazing, wonderful person who is living a very hard life, much, much harder than I am. She is dealing with many of the same demons I've dealt with my whole life, but without the ability to understand the tricks the mind plays on us. She's dealing with parents who sometimes get to the end of their ropes and stop doing the things she feels need doing. She's dealing with a world that doesn't always welcome her kind of diversity. She's living a life that is not an easy life, and she deserves to have her story honestly told, as best as I can. And so my title means both that she still screams, but also that I am still screaming out our story, after all these years.