Janey is not materialistic, and that's a problem

If you look up how to get a child with autism to do something they aren't inclined to do, there is almost always the same answer.  Use a motivator.  Use a reward.  Give it consistently for the target behavior, and not at other times.

When thinking about this, I thought at first "There's nothing that motivates Janey consistently"  But that's not really the case.  There is a lot that motivates Janey, but there is almost nothing that can be given as a reward to her easily.  There is a lot she loves, but not a lot that I would be able to only give her as a reward.

A typical rewards chart

What does Janey love?  What motivates her?  Silly attention, as the first thing that comes into mind---joking around with her with funny voices, or little games.  She lives for things like playing Creep Mouse or pretend tickle or high five with the whole "too slow" routine.  She adores those games.  But she doesn't adore any single one enough for it to work as a motivator for something like ABA or toilet use.  And I can't, or won't, withhold playful attention, the main way she likes to interact, to be something she only gets when she performs.

She loves music, of course.  But there isn't a certain song that would always be a reward.  She likes variety.  And it's not a case of any music.  It's not like she'd be willing to work to hear something she doesn't like or care about.  And again, I would never withhold music, her basically only hobby, from her, hold it out to get her to do what I want.  That would be cruel.

She loves food.  And I'd be fine with having some certain food be a reward for ABA or the like.  But there is no one food she's always into.  Some days, she adores chips or M&Ms, other days, she could care less about them.  Even the kind of foods that could work at home but not at school, like bacon or home fries, are not always something she wants.  Like most of us, she is in the mood for something different on different days.

Trinkets still motivate ME!

What about toys, or stickers, or beads, or something like that?  No, not at all.  She enjoys me looking at her sticker book with her, but actually putting individual stickers in it, or getting stickers as a prize---no interest.  There is not really a toy in the world she cares about.  In fact, there is not really any non-food physical object she is motivated by.  She is not materialistic, in the true meaning of the word.  Material things don't much interest her.

She likes a car ride, but not all the time, and in practicality, it's not something that would work as a reward---certainly not at school, and not all the time at home.  We are not going to put her in the car at 10 at night for using the toilet.  And it isn't practical to tell her she can't have a car ride until she does certain things.  Sometimes, we need her to go in the car.

As does candy...

I know that many kids with autism have a special interest---something that is hugely motivating to them.  And it seems like most programs to teach kids with autism skills count on this.  I don't know if Janey is unusual in there really not being a motivator for her that is usable as a reward.  I know she's not totally alone there----I'm thinking of you, Lindsey, and wondering if others have experienced this with their girls.

In some ways, I admire Janey.  She doesn't have the monkey on her back that almost all of us have---desire for what we don't have.  The things she loves most in life are free things---playing silly games with Mama or Daddy or her brothers, listening to the right song at the right time, being out and about and seeing the world.  But today, as I walked around the Target and looked at all the toys and snacks and stickers and countless things that would have been a huge reward to me (and still would be, to be truthful), I wished very much that teaching Janey could be achieved with something I could buy.

The divide

The anniversary weekend of Janey's breakdown last year was overall good---compared to a year ago, it was wonderful.  Most of the time, Janey was cheerful, and when she wasn't, we were able to find ways to make her happy again, pretty much.  However, because that's just how I am, I guess, I'm feeling kind of discouraged today.

A few incidents this weekend are what's on my mind.  Together, they illustrate the difficulties Janey has in learning and we have in knowing how to help her learn.

The first was a "diaper incident" of the worst kind.  I won't get into the details, but you can imagine.  It required an emergency shower, lots of laundry and an hour of floor cleaning.  It was the worst one in years, and it was depressing.

Janey knows how to use the toilet.  And she does use the toilet, when she feels like it.  She can sometimes go for a couple days and use it almost all the time.  But when she doesn't feel like using it, she doesn't.  And there seems to be no earthy way to convince her that she needs to use it ALL the time.  I read a book once about toileting training kids on the autistic spectrum, and I get annoyed every time I think of it.  The main thrust of it was to find what truly motivates your child, and then use the heck out of it to lure them to use the toilet.  Nothing motivates Janey that much.  And I honestly think sometimes she just isn't aware enough of her own body to use the toilet.  If she didn't let on that her appendix had burst, how is she expected to always know she needs to use the bathroom?  That where the divide is---the divide between what we want and reality, the divide created by lack of motivation and lack of understanding.

The other incident, while seemingly small, has been bothering me a lot.  Janey wanted to go for a ride in the car.  We had taken her already that day for two rides in the car, long ones.  It was evening, we were tired, the Patriots were on, there just wasn't going to be another car ride that night.  We told Janey that, but she kept trying.  And trying in non-screaming ways.  I think she felt somehow there was a key that would unlock the ride, something we weren't telling her but that she was determined to figure out.  First, she tried to dress herself.  She often does this, and leaves out major pieces, like all the clothes besides shoes.  When we still said no, she went and found a scarf, a scarf she hasn't worn since last winter.  She presented it to us, saying "This is your scarf!" and seeming to think maybe THAT was what we'd been looking for.

When we still weren't taking her, Janey came over and pointed to herself, and said "MY NAME IS JANE" in a very rehearsed way.  Then she said "Go for a car ride!" with confidence that she'd get the ride, finally.  I am quite sure she was demonstrating a skill that is something worked on in ABA therapy.  She had decided we were looking for her to work for the ride, as at school they have her work for rewards.

Somehow, it's a lot harder for me to see Janey trying very hard to figure out what we want than it is to just have her screaming. It's the divide again.  There is not a way I have found to explain to Janey why she can't do or have something she wants when she wants it.  I am saying to myself here "well, tough.  That's a lesson we all have to learn.  Sometimes the answer is just no"  But if you never, ever understand WHY the answer is no, the world must seem like an arbitrary and confusing place.

So much of what we try to do as parents is based on helping kids to understand the world---why we use a toilet, why we don't go for twenty car rides a day.  But with Janey, her cognitive issues leave many things impossible to explain.  Of course I explain anyway, with the meme of "assuming competence" in my mind.  But she doesn't understand much of it. I can't fix that.  She can't fix that.  We keep trying, but there are some walls, some divides, we aren't going to cross.

YouTube with ease

A few days ago, when trying to round up all three kids for dinner, I realized that all three of them were doing the exact same thing---browsing YouTube.  That was an amazing moment for me.  Usually, I think of Janey as a whole separate category of the family.  There's the boys, and there's Janey.  That might have been the case even if she hadn't been autistic.  She is a lot younger, and she is the only girl.  But her autism sets her apart even more.  The moments of her just being one of the gang are few.  And they are great.

Last night, I watched Janey on YouTube for a long time, and I was amazed.  She uses it with complete ease.  She doesn't type in things to search for, but other than that, she can pretty much do everything the boys do---skip ads, rewind parts of videos, pick a new video from the ones offered, use the back button, make videos smaller or larger, make them louder or softer---all as easier (or more) than anyone could do.  Her choice of viewing probably isn't typical for a nine year old---she loves The Doodlebops, Busy Beavers (a line of videos designed to teach English to non-English speaking kids), nursery rhyme videos, and my personal favorite, videos of people opening Kinder Eggs---but she watches them as intently and as addict-ly as her brothers do.

So why can she learn to use YouTube so easily and so well, when after 7 years at school, she has trouble naming letters, counting objects, speaking in full sentences, greeting familiar people?  I think the difference is motivation.  She is extremely motivated to use YouTube.  It's highly rewarding---interesting videos she can completely control, millions of them at the end of a mouse.  The rewards are immediate and pleasurable.  Letters?  Not so much.

The other answer is that she DOES know a lot of what school (and I) have worked to teach her, but she feels no need to let us know.  Many people working with Janey have suspected she can read.  I think she can, too---in fact, I KNOW she can read some words, because she can have two videos identical except for the title, and she knows which one is which.  But she has little motivation to read, or to SHOW us that she can read.  I think she might actually actively be hiding it.  Several times, when we were not looking, she somehow got to a video that I don't think was one of the choices along the side picked by YouTube.  I suspect, I really suspect, that she typed things into a search bar.  I have no proof of that, but I have my suspicions.

So, how do we make use of the YouTube watching skills?  That's the big question.  More and more, my inclination is to NOT actively try to make use of them.  She loves YouTube, I know she is learning from it, the videos she watches often are instructional type videos I couldn't FORCE her to watch if she didn't want to---maybe I just need to leave well enough alone.  The past seems to support this idea.  She hasn't learned the things we all have actively been trying to teach her, but she has learned with complete ease the things she wants to learn.  So maybe time actively trying to teach her things is better spent giving her time to teach herself, and the tools to do so.

All of this being said, I will go back to the happiness of the moment of realizing that all three of my kids were enjoying the same thing at the same time.  It was a special moment for me---one that for that moment anyway erased the divide that has always made it Janey and then the boys, and made it instead my three kids, the YouTube addicts.

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.

Socks and the Chips Store

Lately, I've been having an even harder time than I usually do finding matching socks for Janey. I swear I can buy 100 pairs of matched socks, and within weeks, I have 100 socks, none of which match each other. It's a mystery. But it's been getting worse and worse, and I think I figured out why. Janey keeps bringing me a couple socks and handing them to me. It's her way of saying "Let's get going!" She much prefers bare feet, and has figured out that when socks get put on her, it's time to go someplace.

And the place she wants to go all the time? The "Chips Store". The chips store is the CVS on the way to and from Janey's school. It's where we occasionally stop for Janey's treat---which is usually a can of Pringe's Salt and Vinegar Chips. It's something I'd do usually on a Friday, as an end of the week treat. Last week, because Janey asked so clearly and nicely, and because I needed something else there too, we went on something like a Tuesday. The next day, Janey again asked perfectly, saying something like "I want to go to the chips store. Can you say Please?" and I couldn't resist. Then a third day last week, I needed to pick up books at the library across from the CVS, so I told her if she was very, very good while I picked up the books (which she often is not---libraries bring out her urge to scream and throw things), we would go to the chips store. She was great in the library, so we went.

And of course, I've created a monster. She wakes up and the first thing she says to me is "Go to the chips store". She brings me socks, and sometimes for further emphasis, my pocketbook. She gets herself dressed as much as she can. She pulls out all the stops.

And that is fine, except I don't want her to have a can of chips a day. The medication she is on can cause weight gain, but hasn't in her at all yet. I worry about weight issues as Tony is an insulin-dependent diabetic, as are most all the members of his family. They have a hugely genetic form of Type 2 diabetes, which hits them hard. Despite all Tony's hard work, he is going to have to start having more shots a day and more testing. It's the auto-immune issue popping up again---my favorite autism theory. I have autoimmune thyroid disease, Freddy and I both have asthma, another auto-immune disorder---it pops up on both sides of the family all over.

I wish I could find something else Janey loves as much and is as motivated by as the chips store. She is not like some kids with autism, with huge obsessions with certain topics or foods or items, although she gets crushes on things for a while, like Funions or certain songs. But the chips store is showing me the power of her increasing ability to make connections and plans. She is thinking ahead---"I need socks on to go to the chips store". She is controlling her behavior---"I need to be quiet in the library if I want to go to the chips store" She is using speech to actually ask for the store. It's pretty cool to see. I wish they sold very small cans of Pringles---we'd go every day!