Tuesday, March 11, 2014

Janey's Mysterious Mind and Memory

I wish more than almost anything I could go inside Janey's mind.  I wish I could do a mind meld, like Mr. Spock, and just for a little while, see what her thoughts are like.  It would help so much in making decisions about her.  I try hard to believe in one of the latest catch phrases "assuming competence"---I try hard to assume that Janey understands everything and has a huge amount of untapped potential.  But there are days when it's hard to keep up that belief.  It's hard to understand why, if she does have this potential, her talking doesn't progress, her learning remains for most areas very, very slow, her toilet training seems to have permanently stalled.  And of course highest on my mind lately---why a school full of people doing their absolute best for Janey for seven years have not been able to teach her enough for it to seem like the right thing to keep her there.

A few things happened this past weekend that made me realize how mysterious Janey's mind is.  One involved a popular toy---a Pillow Pets Dream Lites stuffed toy.  About two years ago, we saw an ad on TV for these pillow animals that light up and put stars of light onto the ceiling.  Janey, in a hugely rare moment for her, said "I want that"  I really have no idea why I didn't get her one.  I guess it seemed like a very expensive and somewhat silly toy, but I can count on one hand and have fingers left over how many times Janey has actually asked for a toy.  I should have eagerly grabbed the phone to order one.  Maybe we were feeling extra pinched for money, or something---I don't remember.  However, this past weekend, I saw a Dream Lite dog at my favorite thrift store, still in great condition, lighting all up.  I asked Janey if she wanted it.  She was half asleep and not in a talking mood, but she gave a half nod, so I tossed it in the cart.  When we got in the car, Janey suddenly said something I didn't understand at first, but recognized as an unusual original sentence.  I asked her to repeat it, and she actually did---"I want my toy!".  Wow.  Tony went through the bags and found the pillow dog right away.  Janey spent the car ride home pushing the button to turn on and off the lights.  Since then, she has kept the toy close.  She isn't fanatically in love with it, but it's obvious she has more interest in it than almost any other toy she has.  And I keep thinking---she really did see something she wanted, years ago, asked for it, saw it again and remembered it, and made the effort again to make sure she had it with her.  There are times that would seem out of her reach.  It's re-taught me something I keep having to learn.  If a child that almost never asks for any toy asks for one all of a sudden, just get it!

Janey was overall in a grumpy, sleepy mood last weekend.  I hadn't seen her smile in days.  And then her brother William came home for a surprise afternoon visit from college, and Janey was obviously thrilled.  She smiled nonstop for the rest of the day.  It's not like she rushed over to him and hugged him---she doesn't provide the kind of reactions that are that easy to read.  But in her own way, seeing him meant a huge amount to her.  I wonder if she often dwells on where exactly he is.  She's seen his room at college, we've talked to her about where he is a lot, but I think still she doesn't get it.  He suddenly went from being here to not being here, and seeing him again must be a huge relief to her.  It teaches me another of those lessons I need to be reminded of over and over---we have no idea what is really worrying her or upsetting her.

Janey's mind doesn't yield easily to analysis.  The clues to her thoughts, her worries, her wants and needs---they are subtle.  But when I work on understanding her, I do think it's true that there is so much more there than it would seem at first glance.  It's going to be my life's task to try to understand her.

3 comments:

Janet Singer said...

Great post. It reminds me of the story of Carly Fleischman (I'm guessing you must know of her?) who has autism...there is SO much more to her than anyone ever imagined.

Janet Singer said...

Great post! (This is Janet from ocdtalk.wordpress.com). It reminds me of the story of Carly Fleischman (I'm guessing you must know of her?) who has autism...there is SO much more to her than anyone ever imagined.

David Fee said...

The autistic mind is like Churchill describing Russia. "It is a riddle, wrapped in a mystery, inside an enigma." The weird thing my kids obsessively watch the 1941 movie, Dumbo, on a daily basis. Then I read this article.
Reaching My Autistic Son Through Disney http://www.nytimes.com/2014/03/09/magazine/reaching-my-autistic-son-through-disney.html?_r=0. It choked me up to realize my daughter may not have seen too many cartoons by age 4 but she became glued to the cartoon that has a lot of meaning for autistic people. Weird.