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.

It's all stored up there somewhere!

A week or so ago, Janey woke up saying "You want your Bruno dog?"  Translated, this means she wanted Bruno.  Bruno is her cousin Zeben's dog.  She last saw Bruno about 2 years ago.  When he was here, she paid almost no attention to him.  She wasn't scared of him---he's littler than our cats---but she wasn't interested in him at all.  I never heard her say his name, and I had no idea she ever knew it.  She hasn't talked about him in the past years, and we haven't talked about him more than in passing.  Yet somehow, his name was stored in her mind, and something made her suddenly want him.

I've realized more and more that almost everything Janey hears, sees or experiences is stored in her memory.  We might not known it, there might not be any way to readily get her to let us know she can access those memories, but it's all there.

Thinking of that, I've been thinking how important it is to keep giving Janey new experiences, new things to learn, even when it's hard doing so.  I'm thinking of my trip to Maine.  The sleep issues and the screaming made parts of it tough, but Janey experienced a whole, whole lot in a few days.  She got to spend extended time with her grandparents, she got to climb rocks and see alpacas and go to a fair and sleep in a travel trailer.  All that is in her head, somewhere.  It's not lost.  Some day, when I'm least expecting it, a bit of it will be spoken of by  her, or she'll do something that shows me she learned from all we did.

A few more examples I saw today----Janey saw two of our cats sleeping, and said "Tommy and Ash!"  She's said Tommy before, but none of us had any idea she knew Ash's name.  He's the shy cat, and she has never before referred to him.  Later, she was having a good loud scream.  I was using my most recent strategy, which is making sure she isn't hurting herself or in the position to hurt anyone else, and then just saying "I see you are screaming.  Tell Mama if I can help you" and then just waiting it out.  I don't think Janey likes that strategy much, but it seems to work as well as any.  However, today, she said "Want to go to the screaming bathroom?"  I wrote here---link---about the Screaming Room, another screaming strategy I'd tried in the past with Janey.  It involves going into the bathroom with her and staying there with her until she stops screaming.  I'd given up on in a few months ago, but I'm going to give it another try, if that is what she is asking for.  It was the first time I remember her asking for a specific way to help with her difficult behaviors.

One of the hardest things for me about autism is the lack of feedback from Janey.  It can feel sometimes for days like I am talking to myself, like I am trying so hard to help Janey and nothing is getting through in the slightest.  But that isn't true.  I need to remember that.  Janey is learning all the time, and I love the rare times she lets me know 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.

Routines...Once again, I was clueless

If Janey ever does learn to talk well, I imagine one of the first things she'll have to say to me is "Why did it take you so darn long to figure out basic things about me?"  I don't know if Janey's personality is showing itself more strongly lately, or if I'm just paying more attention, or what, but this week, I am realizing that Janey really does like routines.

You are probably saying to yourself "Is this woman clueless or what?  Her daughter is autistic!  Don't all autistic kids like routines?"  Well, probably most of them do.  But with Janey, it's not always easy to tell.  Her problems with communication often leave us completely not aware what she is upset about.  The problem is complicated by the fact that Janey has a fantastic memory for small details.  That results in routines that are in her head, but that we would have no earthly way of knowing about or following, because she can't tell us about them, and we haven't even noticed they WERE routines.  Another barrier to me figuring this out---Janey is not at all bothered by new situations.  I guess, thinking about it, that makes sense.  Brand new situations don't HAVE a routine.  This explains something that always confused me---why the early weeks of school have always been among Janey's best weeks of the year.  I always thought it was that she was very happy to get back to school, and that's some of it, but it's also that she hasn't yet got the school year routines carved in stone, being in a new classroom and all, so it's not as disturbing if someone doesn't follow them.

A great example of how I'm slowly figuring this out----this weekend, I was getting Janey dressed to go shopping with Tony.  We did the pullup, the clothes, washing off her feet (as she somehow attracts dirt to her feet like a magnet) and washing hands and face.  I decided to skip brushing hair.  Her hair looked okay, and she hates it being brushed.  Her long hair is one thing I'm probably very selfish about.  I don't want her to have short hair.  I love her long hair, and I think she likes it too.  But brushing is a battle.  However, Janey balked at the door, went back in and grabbed the hairbrush and handed it to me.  I had skipped part of the routine.  I thought maybe because she was ASKING for her hair brushed, she'd be happier about it, but she wasn't---she screamed for it just the same.  But screaming or not, she felt it needed to be done.

Another example---one of the first times we took Janey to a neighborhood where my favorite thrift store is, Tony took William and her to a restaurant near it.  It was a rare attempt at restaurant eating, and by reports, not that successful.  She has some fries, but quickly got restless and they had to take most of the food home.  However, now every single time to go to the neighborhood and walk past the restaurant, she tries to pull us in there, open or not.  Somehow, that got processed as a routine, but I am quite sure if we did take her, she wouldn't like it any better than the first time.

I am sure there are hundreds of other routines I'm not aware I'm supposed to be following.  I think a lot of Janey's random screams and fits are because someone is not doing what they are supposed to be doing.  Once in a while, she can silently correct things, like how she often moves my arms or legs when we are reading or snuggling, so they are in the right positions, or how she finds a bag we once got of small red cocktail type straws that have become the only acceptable straw for chocolate milk.  But so many things are out of her control.  It's not that I would do them all, if I knew them, but if she could talk more and understand more, I could explain to her why we couldn't.  I could avoid the situations that would set up the need for a routine to be followed.  I would not be as surprised by her screams if I knew I wasn't doing what she thought I should.  For now, I will have to just do the best I can, with my memory that is not nearly as sharp as hers.

And now, for a bonus, a picture from Janey at school today!  It doesn't really have to do with the routines, but I love it anyway, and it shows how she is included and happy at school, working on a science experiment.  Thanks, Amy!