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Friday, September 20, 2013

Puzzling out the rituals

After recently figuring out what Janey really meant by her common phrase "Snuggle on Mama's bed" (which I wrote about here), I've been more alert to other rituals or OCD-like needs that Janey has.  It's tricky to figure out, as she talks so little.  I think with many of the rituals, she just goes ahead and does them, quietly, because it's too much work to talk about them and because she's not driven socially to share them.  Others, though, involve us, and I'm realizing much of her speech she does have might actually be in service of trying to get us to understand those needs.

The big breakthrough this week involved how Janey is often bringing me clothes, and saying "Put on shirt" or "Put on pants".  This almost always happens when we get home from someplace, like school or shopping.  I figured, for years, she was asking me to change her clothes, and I usually did, because I try to do what she asks if there's no reason not to.  But often she would freak out as I tried to do this, get hysterical, take off all her clothes, throw the clothes around, and I'd say something like "Fine!  We won't put that on!" and think to myself "Why is it always this way?  Why does she ask for things she doesn't want?"  Lately, though, she's been more often bringing me a piece of my clothing.  I assumed she was confused, and wanted to put that on her, and I even did a few times, which she sort of half seemed to accept.  FINALLY, it struck me.  When she brings me clothes, she wants ME to change my clothes.  It's something I often do after coming home from someplace, a lot because I'm a slob and have spilled food on myself or gotten my pants muddy or something.  I guess in her mind that became a ritual---Mama changes clothes when she gets home.  When I didn't, I wonder if she felt uneasy---is Mama leaving right away again?  Why is she not doing what she is supposed to?  And gradually, she realized that some clothes were mine and some hers, and tried in her best way to show me what she meant by bring me my clothes.  This week, as soon as she brings me any clothes, I go change my clothes.  The look on her face is priceless.  It's so wonderful to see her realizing I finally understand.

The next step would be to do what she needs me to do before she asks.  I've tried to do that with the Mama's Bed issue.  Tony has been picking Janey up from school, and when I know they are about to get home, I get on my bed, so when she walks in the door, I'm where she needs me to be.  This has greatly reduced her screaming right upon getting home.  I might start to try that with the clothes.  When we get home, I'll let her know right away I'm changing my outfit, and see how that works.

There's lots of littler rituals we've noticed.  When we get in the car, Janey has to push on the central console area between the front seats.  When she walks by a certain bookcase, she touches the concrete block we used to make it.  She doesn't eat food until someone else touches it to their lips (for the first bite), which I think came from when she was a baby and I would test how hot or cold food was that way.

I can't imagine how it would feel to have certain things that need to be done a certain way when it's so hard to communicate that.  There have been times in my life I was quite affected by OCD.  It's been a long time since it's been a problem, but I well remember it, and how extremely strong the feelings are that things MUST BE DONE RIGHT.  I'm sure at least some of Janey's tantrums come from us just not getting what needs to be done.  I am not sure what to do with this knowledge.  I am sure there's medication she could take, but I am not sure I'm ready for that step.  There are cognitive ways to deal with OCD, but those would be beyond Janey.  I am trying to talk to her about her feelings in very simple terms, just saying things like "It's scary when Mama isn't where she's supposed to be, isn't it?" and I get that response---that look of surprise and thankfulness.  I think for now I'll just keep observing, and trying harder to figure out what Janey is telling me, even if she doesn't have the words to really explain it.  I think it's more important now to establish her trust by showing her I do understand than it is to try to overcome her rituals.  We'll keep on truckin'---keep on trying to figure out my puzzling girl.


Pam said...

Suzy, what a wonderful week of realizations for you!!! I hope it helps ease things for Janey and you!
It's funny (or maybe not so much) that even for my verbal Aspie kid, we have had similar issues where I didn't realize that the way I was talking or doing something with him was making life hard until that lightbulb went off....we are still dealing with it as he starts college and he is trying so hard to be independently dependent and we are not a happy bunch at times. Our situation can't be compared but I just wanted you to know that you aren't alone with those lightbulb moments. And they keep coming as life marches on in many ways!! Celebrate the realization and appreciate how they help!!
Thinking of you always! Pam

jeffreymwhite1 said...

Personally, I think you are a genius!

Suzanne said...

Jeffrey, thanks! Although it's far from true. Pam, it was such a wonderful thing to see your comment! It's kind of amazing how our lives have the parallels they do, going back as far as we do! It's true that talking doesn't always make it easier to figure out when we are doing something that is making it hard for them---I've certainly learned that with the boys! Thinking of you also!

Mary Leonhardt said...

I think you're amazing, Suzanne, for figuring all this out. So are you assuming, now, that much of the breakdown in Janey's behavior is a result of her frustration at not being able to communicate her rituals?

If this is true, then I wonder if there are any new programs out there (I'm thinking of ones that uses technology, perhaps)that Janey could use to communicate more easily. I'm wondering if finding such a program might be more important than keeping her mainstreamed.

I guess it depends on how her behavior is progressing. Are her breakdowns times becoming less or more frequent? If less, then perhaps she could stay where she is, and you could keep on with what you're figuring out at home.

But if her behavior is getting worse, then you may want to investigate programs that focus on communicate skills. Perhaps the rituals she feels like she needs to follow are overwhelming the current growth of her communication skills.

Plus, of course, there are programs and medications that directly target OCD. I had students who were treated successfully, although they were not on the spectrum. I understand that with autism it is a whole different ballgame.

Anyway, just my thought, for what they are worth. I think you're doing a fantastic job with this child.