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Tuesday, September 27, 2011

The Night Siege

It's one in the morning. Janey wakes up, and as always, comes to me. She wakes me up and says "Baby Einstein!". I say "It's nighttime now. We don't watch videos at night. We sleep at night. Snuggle down next to me and let's sleep". Janey says again, in a louder voice "BABY EINSTEIN". I repeat my lines. Janey kicks me. I tell her to stop and go to sleep. Variations of this repeat for a while, then she wakes up Tony. He says what I have said. We both lay down with her between us. She kicks up both, screams "I WANT BABY EINSTEIN!". She tries a little variation, by doing what is so often done to her, modeling the correct response "I say...YES!" We repeat tiredly the lines about it being nighttime, time to go to sleep. We then try ignoring. That only makes her more determined to get her point across. Several times she attempts to get up and put on the DVD herself. We bring her back to bed. It is now 2:30am. Tony has to get up for work at 4:30. I have to drive Freddy to the bus at 6. We both are at the point where tired doesn't even begin to describe it. Janey is wide awake, with the one thought in her mind. We look at each other, and wordlessly, Tony gets up and puts on Baby Einstein. Janey delightedly watches it for a few minutes, and then goes to sleep. She sleeps until 6:30, when she gets back up and asks for, yes indeed, Baby Einstein.

Now from Janey's point of view, as best as I can figure it. Janey wakes up. It is dark, and she isn't next to Mama. She gets up to go to Mama. In her mind, the Baby Einstein video is playing. But she needs to see it, to refresh her memory of some certain part, to tickle her brain, to scratch the mental itch which is bothering her. She doesn't have distraction techniques. When she wants Baby Einstein, she wants only that. She uses her words, as she has been taught, to tell Mama what she wants. Mama doesn't answer right. Mama must not get how important this is. She asks again. Mama again is saying no. Mama must not understand the question. She will tell Mama how to answer "I say...YES!" Mama laughs a little at that, and still says no. She decides Daddy might be the one to ask. He says no too. Meanwhile that need to see Baby Einstein is getting worse and worse. Mama and Daddy keep talking about dark, and sleep, and tired. Those words don't mean much. They are missing the essential point, that Baby Einstein must be watched. They tell her to sleep. But it's impossible to sleep. Time goes by---some hazy amount of time, and finally they see the light and put on the DVD. Janey sees what she needs to see. Her mind is quieted. She goes to sleep.

What lessons are learned here? I have very little idea. I've learned, over and over and over, that regular parenting techniques don't work on autistic kids, usually. They don't want to please you. They don't always feel tired in the night. They don't have the ability to shut off thoughts, or replace them with other thoughts. Often, there is a voice in my head telling me the "right" thing to do. "Don't give in to her! You need to stand firm!". But there is my body, saying I must sleep at all costs, Tony needs to get sleep before he goes driving on 128 at 5am. WE HAVE TO SLEEP. What good did the hour and a half siege do? No good. Janey didn't learn a lesson. Other times, when it was perhaps the weekend and we needed to get to sleep less, we've outlasted her. It has taken sometimes up to 6 hours. And she sleeps for a few hours, wakes and is in a terrible mood, and wants the same thing she wanted when she went to sleep.

And we have other kids, and jobs, and other parts of our lives. What I think of collectively as "The Books" and "The Experts" might say we should never have given in. But those books and experts always seem to deal in isolation---there is only the autistic child. There is no need to sleep, no older kids that need rides or forms signed or attention. No jobs. They also assume autistic minds are like regular minds in some core ways that I don't think they are. Janey doesn't seem to learn from the past as other kids do. She was not thinking "Gee, they don't seem very happy I woke them up. They aren't putting on my video. I should just go to sleep and not try this again". She is thinking one thing, and one thing only "BABY EINSTEIN".

And so another day in a half dream state, barely awake. Janey, as always seems to be the case, is bright and awake and shows no effects of lack of sleep. And so we go on.

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