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.

Night Waking without Day Sleeping

For 5 out of the last 6 nights, Janey has been awake most of the night.  The problem is never falling asleep.  She goes to sleep easily, between 7:30 and 8:30.  But then, around 1 or 2, she wakes up.  She wakes up completely, ready to rumble.  She asks for food, videos, a bath, "go to the ice cream store", whatever.  She seems to have no idea it's night.  Nothing, I mean nothing, we can do gets her back to sleep.  And so we are awake, at least one of us.  We try to take turns, so that Tony and I both get some sleep.

I've of course researched this and talked about this before.  I've gotten lots of helpful ideas this way, or at least helpful in theory.

1.  Create a safe space, put Janey in there, don't let her out, so you can sleep anyway.

Our apartment is small, but with one son in college and the other mostly sleeping on the 3rd floor of our house (the apartment is small, but the overall house is big, and we are on the 1st floor), we do have spare rooms.  However, putting Janey in one of them alone is not an option, because of her self-injurious behavior.  If she's upset, and being alone in a room with us not answering her whims will make her upset in a short amount of time, she bites and scratches herself.  No matter how empty the room is, she has the tools to hurt herself, and that is not something we can live with.

2.  Melatonin

Tried it.  No effect, none.  Nothing.  Maybe it works better to get kids to sleep at night, and not for night waking, or maybe, like with a lot of medications, Janey has a very high tolerance.

3.  Other medications

Janey's new medication, Tenex, for the first few days seriously made her tired.  In the daytime.  But even then, not at night much.  After a couple days, it doesn't seem to be making her tired at all, which is very good news for the day, as it's helping otherwise, but very bad news for the night.  Our pediatrician said we could give Janey Benedryl when she was just not sleeping.  One Benedryl and I'm out like a light, but again---no effect on Janey.  None.

4.  Completely giving Janey no attention, besides just saying "time to sleep" and lying down with her.

Yeah.  Tried that one a million times.  Janey is not terribly dependent on our encouragement through attention to keep asking us for what she wants.  We can say "time to sleep", turn off all the lights, and still, a hundred times, a thousand times, she says "Kipper?  Ice Cream?  Bacon?  TV on?  Go in the car?  Backyard?"  If we don't answer, she starts screaming, assuming we didn't hear.  Or she cries.  Or hits us.  Believe me, we've tried the no response bit for hours on end.  No effect.

5.  Giving in and staying up with her, assuming she'll sleep when she's tired

She likes that one, but the "sleep when she's tired" part never arrives.  It just becomes a daytime routine at night---videos, food, jumping up and down---and she usually winds up staying up all night, from 2 on.  And then all day, until 8 the next night.  She just seems to be one of those people who doesn't require a great deal of sleep.

6.  Punishments

Like what?  No punishment that we could actually use has any effect on Janey.  Time out?  That requires us to sit right there and monitor her, which she has learned to tolerate until the time out ends, at which whatever behavior started it starts right up again.  No videos?  Sure.  She'll just scream, cry, bit herself, freak out, keep us up all night.  That's our most common try---saying to her "If you are going to be awake, no food.  No videos.  No entertainment"  She doesn't give up.  I think this has to do with her weak sense of what is night and what is day.  Sure, she thinks, we are being resistant, but eventually it's somehow that magical time when you get breakfast again, and if she keeps asking and screaming OVER and OVER and OVER, that time will arrive.

7.  Rewards

Again, like what?  Stickers on a chart to get a reward?  Janey has zero understanding of this.  Promises if she will stay in bed?  She has no real wants except immediate things, and she doesn't understand long term promises, like things that will happen in a few hours.  We could say "If you stay in bed and let Mama and Daddy sleep, we will get you ice cream in the morning"  She doesn't get what morning is, she doesn't make the connection between doing something now and getting something later.

I could go on and on.  I don't want to be defeatist.  I very badly want a solution here.  I have a lot of hope that once school starts, her sleep will improve.  The night waking still occurs during the school year, but much less.  And I realize this might just be a case of her not needing the sleep we do.  Maybe, I hope, in 10 years or something, she'll be able to be left alone awake while we sleep.  I have to admit, though, when we are walking around like zombies day after day from not sleeping, that thought isn't a lot of comfort.

But...the days are better lately.  And that is great.  If we were only awake to enjoy it.

Small Triumphs

I won't lie---the last week has been a tough one.  Janey has been crying a great deal, and has starting with the biting of her arm again, and added a new fun one in---scratching herself badly.  I cut her nails short, and at summertime school, they are keeping a jacket on her all the time for the arm biting (they have AC) but the crying---it's tough.  We really don't know what's up.  It's probably just one of those swings Janey has at times---a bad few weeks, a good few weeks, a great few weeks, a hellish few weeks---and we are never sure why.

But today, there were a few small triumphs, in the middle of a day of screaming and crying.

The first was a good library trip.  Last time at the library, which I wrote about, Janey had a fit.  Today, after picking her up at school, I told her right away we were going to the library, but I was going to just get books at the desk this time, no walking into the stacks.  I also told her if she could be a good girl in the library, we'd get a treat at the CVS, whatever she wanted (the CVS is next to the library).  Janey cried most of the way to the library, so I wasn't hopeful.  But once we got in there, she truly held it together and didn't cry at all, and stayed with me and was perfect.  So off to the CVS we went.  I was thinking that one nice thing about Janey vs. "normal" 8 year olds is that I CAN tell her she can get whatever she wants at the store, because she won't decide that what she wants is all the toys, or a hugely expensive odd thing like an "as seen on TV" wonder knife or something.  She walked right in to the store to the area where the chips are, and for the first time I remember, didn't immediately grab the thing she wanted.  She stood and looked at all the chips for quite a while, and then picked a bag of sour cream and onion ones.  I felt like she really understood the whole deal---the behaving at the library, the treat and even the picking out of the treat.  It felt nice.

When we got home, I had some packing of books I'd sold that I very much needed to do.  I put on The Goofy Movie for Janey, her current favorite, but after watching it a bit, I turned to see she was out of sight.  I was in the middle of taping something, and actually finished the taping---a risky 20 seconds or so---and then went to find Janey.  I found her in the bathroom, and I started looking right away for her usual mischief---toilet paper all over, toothpaste squeezed out, her trying to take a bath with clothes on---but inside, she saw she was wiping herself, after very, very successfully using the big girl potty for what sometimes becomes a huge mess.  I was thrilled.  She has never used the big potty for that on her own before---we've caught her about to go a few times and taken her there, but this was all her.  She got a big high five (after hand washing).

Even though most every moment not described here consisted of crying, I decided to take a risk and go to the post office with her, as I had things that very much needed mailing.  I told her that if she could be good at the post office, we'd get a doughnut.  That was probably too much for today.  She cried most of the time at the post office, even though it was very quick there and the clerk knows her well and was very sweet to her.  When we got out, she looked at me with tears in her eyes and said "David Donald Do?  Dreamed a dozen donuts and a duck dog too?"  which is a quote from Dr. Seuss's ABCs.  I got her the doughnut, mostly for understanding what she was supposed to be doing and what the reward was, which is a step forward.

I have been trying, in one of my many tries at a new way of thinking or a new strategy, to see the crying as just a background thing---not something that has to be fixed or dealt with right away.  A few times today, I told Janey to try hard to calm down, and then walked away to give her a minute or two to do so.  That goes against so much of what is my instinct, but it seemed like she was trying.  I praised her a lot for even a minute of non-crying.

Maybe I'm able to see the good in today because it's the weekend, Tony is home for a few days to help, and Janey is going to the respite house for 6 hours tomorrow.  I'm going to keep trying to pick out the good from even the tougher days.

You catch more flies...

You catch more flies with honey than with vinegar.  That's a phrase I heard often from my mother, and it's a true one, one I try to keep in mind.  Sometimes, with Janey, it can seem like it just doesn't work.  Nothing seems to work---honey, vinegar, being patient, being strict, being anything.  But I was in despair over the seat belt situation, and decided to try some honey therapy.

I thought about what has worked in the past to keep Janey happy in the car.  The unbuckling mostly seems to happen when Janey is upset or restless, and wants something I can't get her while driving or in the car at all.  It follow that if I keep her happy and occupied, she will be more likely to stay in her belt.  So I downloaded a whole bunch of versions of her new favorite song "Turn Your Radio On"  I wish there were more versions even of it out there, but I found 7 or so.  Then I stocked up on her favorite car snacks---Pringles.  I decided that during the drive, we'd keep her music playing and her snacks flowing.  I did that for the last few rides---success!  Janey was happy and content, and no seat belt taking off!  I praised her heavily after each ride, which usually doesn't seem to affect her either way, but in this case, maybe because I had been SO loud and angry about the unbuckling, seems to make her very happy and proud.

I don't pretend the problem is solved, but my point here kind of is that once again, I had to learn the lesson that Janey is not typical, and that I can't always follow typical kid rules with her.  You would really think I'd know that by now.  But I was feeling angry and upset over the seat belt, and I didn't feel like "rewarding" her for bad behavior.  What I wasn't keeping in mind is Janey doesn't think that way.  She doesn't do things to please me, and as a converse, she doesn't do things to make me angry.  She doesn't manipulate, or at least not in that complex a way, I don't think.  She certainly wasn't thinking "I'll be bad with my seatbelt for a few days, so I can get Mama to do anything to keep me happy, and then I'll score some good tunes and snacks" She isn't thinking that way.  I have to, at this point, do what works, without worrying about whether it's Parents Magazine approved, because Janey isn't Parents Magazine approved.  She doesn't follow the rules, so I am sometimes forced not to, either.  I need to be able to drive without fear, and so I will do what it takes.

And in case this way doesn't keep working, I have to thank my great friends, Michelle and Julie, both of whom are sending me different kinds of seat belt locks and harnesses!  I am the luckiest person on earth when it comes to friends, I truly think.  I am humming some Beatles in my head, getting by with a little help from my friends.  It seems appropriate.  At times when I am just plain overwhelmed, when I can't even think straight from stress, my friends have always helped me get by.

So, I'm preparing for today's drive.  We'll listen to some old time gospel and eat ourselves silly on unsuitable snacks, and we'll get by.

My dream iPad app for Janey (and maybe others with autism)

I've thought and thought and thought about what I'd love to see in an iPad app for Janey.  I don't know the first thing about apps or writing them, so I don't know what really goes into it, but I know that many kids with autism have a huge interest in the iPad, and I don't think they are being well served.  There are many communication programs, most of which cost a huge amount and I think are more for schools to buy, and there are lots of toddler or preschool apps that Janey and other kids might be very interested in, but which have design areas that make them not great for teaching her.  I think someone writing the killer app to home educate a child with autism might make a killing, as well as being revered by many, many parents!

Here's what the app would be like.  It would have to first, be very simple to enter.  So many apps require all kinds of choices right at the start, and easily go by mistake to a screen to buy content, or to confusing menus.  You'd have to be able to click on the app and start playing.  Once you did, it would have to feature a very clean screen---not all kinds of hopping or dancing around icons.  I'd picture something like this---a screen with a circle, square and a triangle.  The voice says "touch the circle"  If Janey did that successfully, she'd get a couple seconds of a customizable reward.  In her case, it could be the opening lines of a song she loves, or a piece of a video.  Then, automatically, it would go back to a question screen, and have, randomly or not, a totally different kind of question---this time, it could have 3 numbers, or 3 letters, or 3 faces, with a question about them.  The change there prevents obsessive doing of the same task over and over, which Janey gets into doing.  The program could have a way of analyzing how Janey is doing, and then slowly making itself more complex.  I'm picture a program that could go from capital letters right onto, gradually, reading, or from counting to numbers to adding and in my dream world, on to algebra or something, all done in such a slow and measured way that there are no disturbing jumps in cognition needed.

The BIGGIE is what the program would do if you got an answer wrong.  It would do NOTHING.  It would not make an interesting sound, or say "No, you need to try again" or anything at ALL.  It would move on to another question, in a totally different area, with no reward.  The problem with most programs is that they, without meaning to, reward wrong answers.  Janey loves it when wrong answers result in a shaking no head, or a popping sound, or anything at all.  She even likes it when the game just eliminates the wrong answer and leaves the right ones, or leaves them all there.  I think she likes savoring the wait for the reward, and so picks the right answer last in those cases.  There needs to be no incentive at all for getting a wrong answer!  No punishment either, of course, except not getting to see the highly coveted reward.

The reward would have to be very easy to set up as a personal reward.  What Janey would like might be nothing like what another child would like.  If a child was into Thomas the Tank Engine, it could be a little clip of their video.  If the child was into plumbing (as my older son used to be), it could be a diagram of pipes.  With Janey, it could be a listen to "And the Angels Sing" or "All My Rowdy Friends Are Coming Over Tonight" or "That's Rock and Roll", to name a few of her assorted favorite songs.  Until a child's taste changes, the reward should be predictable and the same every time.  Typical kids would get bored of this, but Janey anyway would feel very gypped if she was expecting one reward and got another.  The reward should also end after a bit automatically.  If it's left up to the child to say how long they want it, they will keep using it forever.

If an app like this already exists, I wish I could find it!  I don't think it does.  There are a few that come close.  One is "Find Me", which was written especially for autistic kids, but it is very limited to one task---finding a little boy against an increasingly crowded background.  It gets the reward just right, but Janey has reached the highest level it goes to and although she still plays it happily now and then, she is no longer learning anything new from it.  Another app that almost works is the First Words group of games.  They require kids to place letters in the right place to form a word (with a template provided) and once the letters are in place, a picture dances around and music plays.  The problem with this one is that it always starts with the same easy words, and goes in a completely identical path each time.  Janey knows that the words get longer and harder, so she just restarts the program at a later time to get back to her easy starting words!

Of course, there are lots of ways to learn besides on the iPad.  But I think the iPad does have a huge appeal to kids like Janey.  It's portable, so they can play in whatever odd body position feels right for them (and Janey gets into some crazy ones!), it exists at both home and school and it's "normal"---it's not an autism only thing, although Janey would not care about that, but overall, I do like her to be into things that other kids might possibly be into also.

We live in an amazing age, where I can even get picky about what kind of apps I want on technology that I would have given up years of my life to have as a kid!  We are lucky that way, to be sure!

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.

The Chips Store

Here's Janey getting her salt and vinegar chips from "the chips store", aka the CVS. She knows right where to go to get them. The other day she thought she'd try some sour cream and cheddar instead, which surprised me greatly, but today she was back to her old faithful. Then she thought she'd get creative and grab a Hershey's Almond---this was after I had paid, and she tried to open it, rendering it unsalable. So I went back and bought it. The cashier said "Don't you want one that isn't all crushed for her treat?" and I said no, she crushed that one so I'd buy that one, but she certainly wasn't getting it as an additional treat! The cashier looked a little troubled by my strictness. She meant well, but that's a message I'd rather not send "Can you give me a fresh new Hershey's Bar to replace the one my daughter crushed when she was attempting to steal it? I don't want her treat to be all mushed!" Of course, Janey doesn't get stealing, but she does get that we don't open things in stores and we don't get things unless I say it's okay. I thought about not letting her have the chips, either, but those were a reward for being very good at the library, and that is an example of where the autism does modify my parenting. I don't think at this point Janey would have had any idea what not giving her the chips had to do with her mushing the candy. She did get it about the candy---she asked for it over and over and I told her over and over why she couldn't have it, and why it was going to be a treat for Freddy instead. It all gets complicated, and who knows if I am handling it all correctly, but there's no guidebook for this kind of thing. We are all making up the rules as we go along.