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Saturday, June 26, 2010


It's silly to say unbearable because, of course, what choice do we have? None. But it felt like the word for this morning. Janey cried much of yesterday---by crying I mean screaming---the horrible, top of the lungs, inconsolable screaming. She did get happy for a few hours in the evening. She woke up happy, and we were planning on going to some lawn sales for the first time in about a month, as that is how I make my living, and we haven't been able to. She started screaming just before we were going to go. We had planned to have William babysit,but we don't leave her with him in that state, so we took her. Huge mistake. She cried less intensely for the first few, got a tiny bit happy in the middle. Then the last one. It was on a dirt road, which you would not think there would be one of in the middle of Jamaica Plain, but there is. It was very hard to get to. As we went down the road, Janey started screaming. I don't think anyone could picture what her screams are like unless you've heard them. They are the scream of someone being tortured, someone in horrible pain, someone insane in an asylum. They are impossible to ignore, impossible to stand, but we have to, many hours a day lately. I tried to get out and go to some of the very good sales. Tony stayed with Janey. She was screaming so loudly I heard her all the way down the road. I came back, to say we just needed to go. Tony had her out of the car, trying to calm her down. Her screaming was so distressing that people were literally crying, trying everything to help her. They offered her water, milk, candy, anything she wanted from the sale. We explained (over her screams) that she was autistic. They wanted to help. I wanted out of there, I wanted to go home and never leave the house again. We got her in the car and came home. She is screaming now, while I write this. This in ON medication, the useless medication that has not helped a thing I can see.

I am at the end of my rope, but I can't let go, as there is nothing there under the rope. We have no choice but to keep on. We love her, we would do anything for her. But nothing works. Nothing. Nothing.

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