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Tuesday, April 7, 2015

Screaming Trumps Theory

For a few weeks, Janey was very happy.  As is usually the case with her, we really weren't sure what was working---her new medication, spring finally arriving, the new behavior plan at school---it's never easy to say.  But she was calm, sleeping well, talking a bit more...and although I try hard to keep an even keel, I was feeling more hopeful about the future than I had in a while.

When things are going smoothly with Janey, I am able to step back and think more about autism and her particular form of it from a theoretical perspective.  I was doing more reading of books on autism, reading more on-line information about various approaching to teaching and learning in autism, and waking up mornings enthused to try new things.  In reading some about the rapid prompting method of teaching kids with autism (RPM), although I haven't yet researched it deeply, I was struck by how the kids are taught facts and information, not just building blocks of learning or emotional things.  One night, when looking out the window with Janey at night, I started telling her about stars, and how they are faraway suns.  I wound up talking to her about astronomy for a long time, while she seemed to be listening eagerly.  I had the feeling, as I have so many times, that I had hit on something important, that I would do things differently from here on in.

And then---Janey has a day when she screams all day, when she cries without ceasing, when she hits us or tries to bit us over and over.  She has a night where she wakes at one in the morning and never goes back to sleep, while she endlessly repeats lines from videos or songs.  She has days where her only words are "Snuggle on the bed!" and when I lie down to do so, she is calm for just a moment and then kicks me, hits me, screams.  She has days where she constantly reaches into her pullups and smears...well, you get the idea.  She has the days that try our souls.

Maybe other people are better at this than me, but when Janey has days like that, the theories go out the window.  It's very, very hard to feel hopeful and ready to try new things when you haven't slept, when you are in pain from repeated hits or kicks, when you are spending your days cleaning up tough messes.  It's hard to wake each morning ready to test some exciting new theory when the day before was what most people unblessed with a child like Janey would consider the toughest day of their lives, but which for us was just another long, long day in a series that stretches back years and into the future for...the rest of our lives.

I think this kind of weariness is why schools are better at staying consistent with behavior plans or teaching methods.  The teachers are extremely devoted to the students, but they know the day ends and they go home, they know the week will be over in time and they will have a weekend, they know summer always comes around.  For parents, that is not the case.  It never ends.  And when a child has been screaming for hours, when you have been hit over and over, when you haven't slept well in nights---well, I guess it takes a stronger person than I am to still calmly follow a particular theory or teaching method.  For me, it takes the energy I have to just try my damnedest to calm Janey down, to keep her clean and fed, to get her to sleep.  And to meet the needs of my other children, to keep dishes and laundry from taking over, to be an approximation of a functioning human being.

If....if Janey didn't have the extreme behaviors...if she were still just as affected by autism and learning issues, but she was more the unreachable kind of autism than the behaviorally challenging kind...well, I think I'd do pretty well.  That is where the image people have of God somehow handing out kids to the ones who can best handle them breaks down severely.  I feel like my strengths as a person and parent are not matched well to being Janey's mother.  I do the best I can, but I simply don't have the energy, physical or mental, to be the type of parent that would be best for her.  So I muddle along.  I get from day to day.  And over and over, screaming trumps theory.

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