Friday, December 5, 2014

Where Do We Draw The Line?

It's hard to decide when to let Naomi get her way.  There have been times when I think I understand what she is talking about/what she wants /what her reasons are and then I find I was way off the mark. I think many autism parents go through this.  Last night was a good example.  We have gotten into a habitof reading 8 books before bed every night.  Last night, after I had gotten through the 8 books and was anxiously working toward "lights out", Naomi said "Mortimer!"    I took this to mean "I want you to read another book," as we have a book called "Where is Mortimer?"
"No, Naomi, we've done 8 books and it's very late.  We're not going to read any more.”
"Mortimer!"  She repeated.
"No! Naomi you've already picked all 8 books.  See? 1,2,3,4,5,6,7,8,"  I said counting each one.
"Mortimer in the bed!" She said.
"Okay," I said handing her the book to set beside her in bed.  It was an odd thing to do, but I was willing to let her sleep with a book if it would get us one step close to ‘lights out’.
She then jumped out of her bed and grabbed a teddy bear - who happens to look just like the character in "Where is Mortimer?"
That's a case where I figured out what I got wrong; there are many where I never figure it out.

Likewise, there are times when I know what she is saying, but I don’t understand the emotion behind it.  For example, last year Naomi got in to a silent ruminating, brooding mood.  It scared me because I know what could follow.  She kept saying "No page, bye-bye page! No reading."
"No reading what, sweetheart? Which page?"
She couldn't tell me.
My kid who happily went to school started dreading school.  She cried and cried in the car as we approached it.
In my sometimes over-polite manner, I wrote to Naomi's teacher in her communication book. "Naomi keeps saying "no reading, no page."  She seems really upset.  Could we skip reading for a couple of days?"  There was no response and judging by Naomi's behavior the reading war had intensified.
I called her supervisor.   Apparently there were 2 pages in a book Naomi was working on that she didn't want to read.  One was of a teacher, the other a police officer.  The text was “I can see a teacher” and “I can see a police officer”. They were kind of odd looking pictures but there was nothing distinctly villainous about them.  Apparently, her teacher was using all the ABA branded means to get her to read the pages.  She was denying her playtime or free choice and she was offering her tokens and things she liked if she would just read those 2 pages.  Sometimes Naomi would relent, but for the most part she would not.  She was clearly dreading that book.
When Steven heard about this, he came to a swift conclusion.
"Rip those pages out! " He said emphatically, and I agreed.
"Well, given the right reinforcer she has read them in the past," said the supervisor.
"Maybe so, but it doesn't quell her fear and she is ruminating night and day about this," I said.
We went on to describe a past experience at the public school where her behavior started like this and then became more extreme until we had a prescription for anti-psychotics.  We never figured out what was bothering her so much, but whatever it was went away when we changed schools.
The supervisor got it.  And while she didn't rip out the pages, she folder them over so they were no longer required material.  Naomi read the rest of the book without difficulty. To the rest of the world there was nothing particularly wrong with these pages, but to Naomi, they were horrible!
For the standard ABA theory this was a power struggle, something that required the right reinforcement.  To Steven and I this were something completely different.  Naomi was not in a power struggle. She was sincerely horrified by those pages.  This is where "Treat them the same as anyone else her age,' doesn't apply.   Most likely anyone else that age wouldn't be horrified by those pages and if he/she were, they would be able to explain why and resolve the difficultly.   The horror that Naomi felt seemed to transcend an explanation that could be given in language, but we knew it was there. 
Now we have a situation that isn't as black and white, but I am concerned.  Naomi has been emphatically saying "No Miss Samantha."  Miss Samantha is her counselor.   Naomi sees her once a week.  She isn't ruminating about her day and night, it just comes out every once in a while.  She can be distracted from thinking about Miss Samantha pretty easily.  She hasn't expressed any reluctance to go to school although that's where she sees Miss Samantha.  In short, it's not that serious.
I could ask to sit in on a therapy session, but I doubt that would give me much insight.  Samantha has told me about some of the things they are working on and what they are doing.  While I'm not particularly impressed, I don't think there is anything distinctly off-putting. It could be similar to those pages.  There is nothing that most of us can understand as being so awful, but it's awful in Naomi's mind.  I'm really tempted to tell the school "Naomi will no longer be getting counseling here."  End of story.
Someone outside of the autism world may say.  "Are you going to stop everything any time Naomi says she doesn't want to do it anymore?  What is that teaching her about life?  What is that teaching her about reality?"  And that's a fair point. But if we had forced Naomi to read those pages she dreaded, I imagine her behaviors would have intensified until she had to start on an anti-psychotic medication.  What is that teaching her? (By the way, I totally understand that medication is often necessary, but if you can avoid it by avoiding 2 pages in a book, that’s probably what should be done.)
So where do I draw the line?   No one gets to call the shots all the time.  Yet, I want to teach her that by bringing her problems to me we can change things and make them better.   I think I'll give it another week.  I know that the school will not be pleased if I stop her counseling and I want to pick my battles with them just as I pick my battles with Naomi.  To be continued.....

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