If you like to read heartwarming accounts, or tales of positive action and good results and special moments, you might want to skip this entry. I'm sure I'll get back to that, but for now, I haven't got that in me.
I wrote optimistically on Friday about trying a new way to deal with Janey's screaming. I felt enthused, and we saw some early good results from ignoring the screaming. I woke Saturday determined to work on that method. However, Janey didn't have the same determination.
We all can ignore screaming. But Janey doesn't like to be ignored, and so as soon as she figured out what game we were playing, she upped her own game a notch. We can ignore screaming, but it's a lot harder to ignore screaming when it's combined with grabbing various objects and flinging them around violently, or with biting her own arm so hard it leaves marks, or with smashing into her brother as hard as she can, repeatedly, or with taking any liquid that is available and spilling it on the ground. Or even just sticking to the basic screaming, but keeping it up at incredibly loud volumes for an hour, to the point that one gets quite concerned that anyone hearing her would assume she's being horribly injured. Or when, if you attempt to take her in the car to diffuse things, she rolls down the windows, throws things out the windows, thrashes around so much it's impossible to drive, hits anyone in the back seat with her and makes so much noise that passerbys are startled. Or turns off the TV or computer someone is trying to watch, over and over and over and over. Or strips off her clothes literally hundreds of times a day. That was yesterday.
There were little, tiny moments in between the horrible moments when Janey appeared perfectly calm and happy, when she sang or played outside or was sweet to us. But it's hard to relax and enjoy that when any hug can suddenly turn into fury, when from one second to the next happy talk can become deranged sounding screaming.
When Janey is like this, it's not living. It's surviving. We are shell-shocked. We look at each other and just wonder how we will make it to night. And when we slip and let ourselves think about the future---there doesn't feel like a future. There is no end in sight, ever. There is only Janey getting bigger, getting to the point where she will be stronger and we will be weaker.
I'm not going to put a silver lining here. I am going to say that it isn't always like this. If you read back in this blog, sometimes there are weeks or even months when Janey is delightful, wonderful, when the fact that she is autistic and intellectually disabled is not a big deal, because she is simply Janey and we are delighting in the Janey she is. I have hope that she will cycle back to that. That is how we do it, when people ask us how we do it. We hope.