Janey's Mysterious Mind

If I had one wish, I would put aside the regular wishes like a billion dollars or unlimited more wishes (well, maybe not that one!) and wish to be able to be inside Janey's mind for just one day.  If I could see how her mind really worked, what the set-up is in there, what she understands and what she doesn't, I think I could be a better parent to her.

I have a few examples from recent days of my glimpses into Janey's thinking and abilities.  They are interesting, but like blurred photos or an book with some pages missing, they give me only a hint of what is whirling up there in her mind.

One of the things I'd most like to see is how she arranges memories.  I have a feeling they are like YouTube clips, little stored segments that come up when the right keyword is entered in.  The other day, I put a Kermit the Frog top on Janey.  I said "Look at this shirt!  There's a picture of Kermit the...." waiting to see if she would finish the phrase.  She didn't at first, and I let it go, but a minute later, she said "Kermit the Frog!" Then she started reciting, word for word, a skit from Sesame Street, something on a video I'm quite sure she hasn't seen in years, as we lost it, where the Count gets a job as an elevator operator and Kermit gets on the elevator.  She knew all the lines, as she usually does.  I picture her brain getting the Kermit keyword and bringing up the clip, stored in complete form.  It's an interesting form of memory, but it doesn't allow for easy answering of questions.  She knows who Kermit is, but unless I'd known why she was talking about the Count, I wouldn't have gotten what she was saying.

Other times, Janey uses the clips to try to communicate.  This evening, she took a shower and I was drying her as she got out.  As it wasn't a washing hair shower (she just likes to take showers a lot, and sometimes I let her just take one to enjoy the warm water), her hair wasn't really wet, and I wasn't drying it.  That wasn't the usual routine, and Janey had the look of wanting to tell me something.  Suddenly, she said "Yeah, Sister!" and then started singing "I'm gonna wash that man right out of my hair!"  She likes that song, and she's seen the clip from South Pacific, where the star dries her hair with a towel.  She was telling me that I needed to dry her hair.  I pictured her doing something like a Google Image search, finding someone doing what she wanted doing, and then using her memory to try to give me that image.  It's complex and interesting, but it's not practical in a lot of situations.

Although long periods can go by without Janey showing her hand, I do think somewhere in her mind, in some conditions, she can read.  This morning, Tony put on The Pink Panther on YouTube for her when she asked for it.  We've often noticed that when we aren't looking, suddenly the computer is on something totally different than what we put it on.  We assume usually she is clicking on the little suggested videos that come up next to the video she is watching, but sometimes, that seems unlikely.  Today, I was watching her when she didn't realize I was, and I saw something surprising.  She closed YouTube, then reopened the browser and went to the bookmarks (she could have done this right from YouTube, but she is very tidy on the internet and often just goes around the house closing computer windows)  The list of bookmarks was quite long, and she scrolled down it and found what I believe she was looking for, Weird Al's "White and Nerdy"  She clicked on it and happily watched it, then was able to click on some other Weird Al stuff that came up on the sides.  I don't know how she could tell that particular bookmark was what it was without reading it.  When she saw I was watching her, she gave me a look that was a little sheepish.  I said "You can read, can't you?"  Of course, no answer.

I was thinking this all through today, and feeling a little frustrated.  Why can't Janey put her amazing memory and her hidden abilities to use?  Then it occurred to me---she does.  She doesn't do so in the way we might want, but she does.  She enjoyed remembering the Kermit video, she managed to tell me what she wanted me to do with her hair, she got to watch the Weird Al video she wanted.  When I push for more, the times I have, she either simply acts like she doesn't know what I am talking about or she gets actively upset.  So---do I accept she's doing what she wants to do?  Or do I call her bluff and try to make her use her abilities to be more like the rest of us?  I don't know the answer to that.

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.

Motivation and Drive, the autism way

After I wrote yesterday about my frustration with Janey's learning, I thought very hard about how she does learn.  It struck me that two major things make her learning different that typical kids.  One is motivation.  She has to be internally motivated.  She is not motivated in any way by pleasing others, or just be the thrill of accomplishment.  She is motivated by actually getting to do or see or hear things she enjoys.  She also does not have a drive to move on, to find the next big thing, to seek novelty.  She would never enjoy a role-playing game, as I do on occasion, where the big fun is getting to the next level and seeing what is there.  She lives in the moment when it comes to learning.

The right motivation can drive Janey to do very complicated things, things we'd never guess she'd be able to do.  For example, she loves to pick videos on Netflix.  She isn't quite able yet to get to the Netflix program on her own, but to be fair that's tricky for all of us---it involves changing a setting on the remote, pushing the right button on a row of buttons and making sure the Wii is on, and going to the right place on the Wii with a different remote...it's a wonder it ever gets done.  But once you get her to Netflix, she can do it all.  She finds the right list of videos (Recently watched or favorites) by scrolling up or down, then when she gets to the right list, she scrolls right or left to find the picture of the video she wants.  She clicks on it, then finds where it says "Play from Beginning" and clicks that.  If she gets tired of a video (as she often does), she can exit out and switch to another one.  This is all from a girl who sometimes acts like she barely knows her own name.

However, without motivation, she will not do the most basic things.  She can put on her socks and shoes and coat when she wants to go someplace, but when she doesn't, she'll look at us helplessly like she has absolutely no clue what we could be expecting.  You can't convince or prod or force her to put them on.  She simply sees no reason to do so.  Our disapproval is not a reason.

The other big factor in her learning is the lack of desire to move on.  I realized that when watching her this morning playing with the First in Math program on the computer.  She was very eager to play with it.  She woke up and asked for it very first thing.  We went to the shapes matching game, where you pick shapes from a cloud of floating around shapes to make three in a row that are the same.  She can easily get the right shapes when she feels like it, but I realized she really doesn't care about that.  She likes the floating shapes, the music, the whole bit.  She puts shapes in the wrong place and then just watches the program float around.  I would be driven to see what happens if I get enough right in a row---I'd want to see what came next, what kind of reward there was, how the next level got challenging.  I was so driven I almost jumped in and just played the darn game myself.  But Janey was happy with it the way it was.  It wasn't that she might not have liked the next level too---but that just didn't motivate her.  I don't usually get into the whole "We can learn a lot from our children with autism" bit.  I feel like autism is a disability, not just a difference.  But in this particular case, I might make an exception.  When I let myself relax and just look at the shapes floating around, I could also see her point.  It was relaxing.  It was something in itself to do, not just a step to the next part.

However, kids with autism do need to learn.  I think the key is designing learning programs that understand them.  They have to be highly, highly motivating.  Getting something right has to result in a big reward, like a song the child loves or a video clip or so on.  But the actual tasks, in contrast, might have be kind of boring.  If Janey is happy just watching shapes float, the task might need to be taken down in interest a notch.  She needs to do the task to get to the reward, and therefore actually have some motivation to get the answer right.  Even writing this, I'm fighting that way of thinking.  It goes against my grain.  Learning should be natural, should be enjoyable!  Kids learn best when they are having fun!  All those phrases are hitting me.  But autism changes the rules, for a lot of things.  Learning might be one of them.

My imaginary trip into Janey's mind

I try all the time to figure out what Janey's mind must be thinking, to get a better idea what it would feel like to be her.  Lately, I've been using analogies of a library or a computer to try to get her unique way of thinking.

The library first----I picture myself walking into the library that is Janey's mind.  The first thing I notice is how many books there are.  There are books with lines from pretty much every video she's seen, every song she's heard, every conversation she's been present for.  There are books all over.  So, I try to look up a subject I want to read more about, and notice that there is next to no cataloging system.  No computer guides, no card catalogs, no librarians at the desk to guide me.  There is maybe a very general guide up on the wall to the rough area the books I might need are, but that's all.  So I wander at random, hoping to find what I need.  Frustrated, I mutter out loud "Where's the books about kings?"  Suddenly, a pile of books appear before me.  They all contain information on kings---there's one about We Three Kings, one about King Friday, one about the King of Joke-a-Lot, one about Burger King.  None of them might have what I'm exactly looking for, but I can recite a lot of lyrics, or suddenly get hungry for onion rings, or request a video out of the blue.  While I'm trying to figure out what to do next, there's a noise I don't expect.  Maybe it's a fire alarm, or a truck outside, or a crackling paper far away, but I hear it, and it distracts me from any more looking.  It's very distressing, not being able to find what I want, and I give up and cry.

Or the computer.  Janey's mind is a computer with a huge hard drive.  It's crammed full of hard info---as much raw information as any 8 year old would have, and more than many.  However, there are several problems.  The processing speed of the computer, the ability to connect and manipulate and interpret the data, is hugely slow.  It's like a 286 motherboard with a 1TB hard drive.  There is also only the most minimal of search engines.  It works like the old ads for Bing search used to, in making fun of Google---you search for "cat", and get all cat information from anywhere "The Cat in the Hat!"  "Cats at my house!"  "The Cat that Looked at the Queen"  "Cattails!"  It's also very hard to add certain kinds of information to the computer.  It has trouble storing pictures, much preferring audio files.  The greatest strength of this computer, though, is its music files.  They play more smoothly than almost anything else. The computer freezes up often when you try to do too much at once, and needs rebooting.  And programs that work one day might not the next, depending on what subroutines are running.  The computer is prone to viruses---if you type in commands in a harsh tone, or let it run too long, or vary the power, it just won't work.

These are guesses.  I don't know if either of these analogies are anything like Janey's mind, but I think they might be.  I use them to try to figure out how best to help Janey.  The crucial thing both mind models need is a better working search engine.  I need to figure out how to let Janey access what she knows.  I need also to minimize noise or viruses or anything that will slow down her systems.  I need to let her make use of the areas that she has in excess---to help her use her auditory memory and musical memory to help find information, and I need to find a way to help her increase her visual skills.  I need to try, slowly and gently, to do some construction and organizing at the library or some upgrading with the computer, to help her still be the same Janey I love, but to build on what she already has.