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Wednesday, April 6, 2016


The scream.  It's incredibly loud, and incredibly sad.  It's a scream of despair, of extreme pain, of furious anger.  It will literally hurt your ears, wake you from a dead sleep, startle you into jumping.

Sometimes, it's in response to a request that can't be instantly filled.  Last night..."I want salami!"  I told Janey we were out of salami, and there it was, the scream.  Sometimes, it's during a video Janey has been watching happily for years.  Little Bear has the mildest of mild arguments with Cat?  Scream.  Sometimes, it's out of absolutely no-where we can see.

If the scream made Janey feel better, if the scream seemed to be an effective means of communication, if the scream was a sensory thing that let out steam---I would not try to find ways to stop it.  It would still restrict us from going places, it would still make it sound like Janey was being tortured, but I would accept it.  But the scream doesn't seem to help anyone, especially Janey.  It's almost always accompanied by arm biting---deep biting of Janey's right arm.  The arm has permanent bite marks.  Sometimes, after the biting, Janey says "My arm is hurty!" with tears in her eyes.  The biting, like the screaming, does not seem like a choice.  I am quite sure Janey doesn't want to scream, or to bite her arm.

What do I do about the screaming?  I don't know.  I have tried literally everything I can think of.  Nothing has worked.  We have tried ignoring, we have tried responding to what we can guess is the cause, we have tried a certain place in the house to go to scream, we have tried just hugging her when she screams, we have tried explaining calmly to her that we don't know why she is screaming and we would like her to tell us in words what is wrong.  Nothing seems to help.  When Janey is in a good mood, she doesn't scream.  When she's in a mildly upset mood, she screams at times.  When she is in one of her very, very bad moods, she screams most of the day.

I would do almost anything to help Janey feel better, to make her not need to scream and bite herself.  I would give her my voice, like The Little Mermaid movie she loves.  I would subtract twenty years from my life, as is said in "At This Moment", one of Janey's favorite songs.  I would give up everything I enjoy.  I would pretty much give my life.  That is how much I wish Janey was happier, how much I wish she didn't feel the despair that leads her to scream and to hurt herself.

When it comes to the scream, all the autism philosophies, all the methods of teaching, all the labels and interventions and behavior plans and ideas, all my sanity, they all go out the window.  All I can feel is sadness, sadness that my daughter I love more than anything is feeling the kind of pain that causes a scream like that, a self-injurious bite like that.  This is not something that can be sanitized, can be made part of anyone's agenda.  This is the horror of the child you love needing help you just can't give.  I'm sorry, Janey.

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