The Things Janey Cannot Change---a plea for serenity

 Last night, while Janey was lingering in the shower after I washed her hair, she said "Want to get out?" I knew what this meant, and it wasn't that she wanted to get out.  She wanted me to adjust the water, to make it hotter or colder.  

I started to reflect then, and kept reflecting all night and into today, on how little influence time and examples and corrections seem to have on Janey.  For years and years and years now, whenever she has said "Want to get out?" while in the shower, I've tried to get her to say what she really means. I've said "Do you really want to get out, or do you want me to fix the water?"  I've tried taking her at her word, and reaching in to help her get out.  I've tried getting her to repeat "I want you to fix the water" before I will do it.  I've tried everything I can think of.  And still, Janey asks to get out when that's not what she means.

I can think of so many other examples like this.  One that keeps coming to mind started at age four, when she first starting with ABA.  The therapist had a Slinky Janey liked, and Janey would ask for it saying "Yoyo?"  I think she started calling it that because she liked to have it bounce up and down, like a yoyo.  The therapist seemed to feel it was important to have Janey ask for it correctly, and would never give it to her unless she said Slinky.  And Janey never would say "slinky" unless she was prompted to, no matter how much she liked the Slinky.  Last month, I showed Janey a slinky from some box of sensory toys I'd gotten.  Janey grabbed it, saying, of course, "Yoyo!"  I don't remember Janey playing with a Slinky in all the 13 years since she was four, and if she did, I'm sure no-one called it a yoyo.  But that's her name for it, and it didn't change.

When Janey wants us to put a show on for her, and we ask which one she wants, she says "This one!"  Although we are driven crazy by this, and we are super motivated to get her to be more specific, although we have tried every single idea we could possibly think up to get her to stop the whole "This one!" bit, it doesn't work.  She still says it, every time.

The same unchanging Janey shows up in ways besides talking.  She is drawn to beds when she has a full bladder, with predictable results.  Believe me, she knows that's not a behavior we like.  Believe me, we have tried extremely hard to stop her from that behavior.  But it continues, year after year after year.  Janey likes to rock in the car to music.  Doing this rubs her neck against the seat belt, and cuts into her neck at times.  I'm sure this hurts, but even that doesn't change her rocking.  Janey stuffs her mouth full of foods she likes, especially salami.  We have tried so hard to stop this---giving her only little pieces at a time, staying near her and constantly reminding her to chew and swallow before taking more, cutting off her salami supply---all to no avail.  

It's hard to understand why Janey persists with behaviors and speech and routines that just don't work well, or actively can hurt her, or that provoke non-positive reactions.  I have to assume it's very, very, very hard for her to change a behavior or label or phrase once it's established.  This worries me.  We are used to her.  We get frustrated, but we love her and accept her, even sometimes through gritted teeth.  But the wider world?  The world without us with her?  I can see how she could seem willful, stubborn, provoking.  I can see how it would be hard for others to understand the depth of her mental barriers to change.

By this point, we've accepted that Janey simply can't change in some ways.  It's not like she doesn't learn when she can.  Anyone who has seen her hands flying using her iPhone or navigating or a web browser, or singing obscure verses of Christmas carols knows she can learn some things extremely well.  And I'm sure she would want to be able to effectively communicate with us; I'm sure she doesn't like hurting her neck or choking on too much food; I'm sure she's tired of our angry reactions to wet beds.  And I know we are motivated to do whatever we can possibly do to try to help her learn the stuck-in-wrong words or behaviors.  We, and she, just can't do it.

What is my message here?  I guess it's to plead for the world's understanding for Janey and all the others like Janey.  They are doing their best.  Those of us working with them are doing their bests.  But as the Serenity Prayers says, even to a non-religious heart like mine, let's all work on serenity to accept the things we can't change.

Here's a picture taken today of my bewildering, beloved Janey.