When Janey got studied and blew our minds

Janey is part of a study of autism at Boston University.  They are interested in kids who are low verbal---who talk but don't talk a lot, and she fits right into that category.  We first started with them just right before all hell started breaking loose, when Janey went to Bradley Hospital and then in fairly short order had her appendix burst, so quite a while went by without us going to the study.  I called them a few months ago and got us started again, and we've been twice since then.

Dedicated parking!

BU has a great setup for the study.  They have a dedicated area, which has been designed to be very autism-friendly.  It's calm feeling, there are toys and books in the waiting area Janey actually has an interest in, they have a dedicated parking space for participants (a BIG deal in the city!) and most of all, everyone we have met working on testing or on interviewing parents seems to be absolutely wonderful at what they do.

Janey seems to love going to the study.  She's never one to have much trouble separating from us, and she goes off happily with the tester while Tony and I get interviewed about her by the head of the study.  The few times we went a few years ago, and the first time we went this go-round, the interviewing lasted as long as Janey's testing, but this last time, we finished the interview and so got an offer to go watch Janey being tested, through a one way mirror.

Well---that is where we got our minds blown.  We saw a Janey we've never, ever seen.  She seemed totally at ease, and very, very on.  She's been in a great mood lately, so that was part of her, but a lot of the credit has to go to the tester, a young woman who had the perfect mix of calm voice, persistence, encouragement and firmness.  

The testing was a mix.  Part of it was identifying pictures, and Janey whizzed through that---words I knew she knew like "cow" and "apple", but lots of action verbs, which I had no idea she really knew.  For example, a picture of a boy swimming got the response "The boy is swimming"---perfect grammar and a full sentence.  With a picture of some birds, Janey first said "bird" and then when asked how many, she actually counted them and correctly answered "four".  We looked at each other in the darkened observation room in amazement.

Some of the tasks were non-verbal things, like sorting silverware or doing little block puzzles.  Janey had no trouble at all with most of them.  Sometimes, she had to be encouraged along a bit, but she didn't get upset, she kept working and she did them!

It was interesting to us that what she consistently got wrong was what I've never had any luck at all teaching her---colors.  She honestly seems to have no clue about colors, and sometimes I wonder if she might be colorblind.  I've been told, though, that many kids with autism have a hard time with colors.  She also gets a little confused on shapes.  She called a star a diamond---sort of like she knew it was one of the more exotic shapes but couldn't bring the name to mind.

Toward the end of the session, Janey was getting a little restless, and she started singing to herself.  It took me a while to recognize the song, but when I did, I was happy---it's a song I love that she's never shown much interest in---"I'd Really Love To See You Tonight".  An old 70's soft rock classic!  She just kept singing the first few lines---"Hello, yeah, it's been a while, not much, how 'bout you?"  She probably sang those 100 times over.  What struck me was how although it looked like she wasn't really paying any attention to the tasks at hand, she kept getting them right.

On the way home, as I processed the whole experience, a few thoughts kept popping up.  One is that Janey's mind truly is different than most.  Not less than most---different than most. It made me think how often I've assumed she was paying no attention, because in her situation I'd not be able to pay attention while screaming or singing or watching a show intently, but from seeing her at work, I realized her mind seems to work on more than one track at once.  

I also kept wondering how often Janey is bored out of her mind.  I've always suspected and in fact felt quite sure she knew more than she showed, but I don't think I realized how much more.  However, it's so hard to access that knowledge, and to know what she knows and how to teach her.  Tony put it well.  He said he always tries to not bring work home mentally, to leave work thoughts at work, and it's like Janey does that with school, and in fact with much she learns in any way.  If it's not something she needs to show in a particular situation, she doesn't show it.  I've asked her to count lots of times, and to use action verbs, and all that---but she seems to feel they aren't something she needs to show she knows, unless it's obviously a testing situation (and then of course only if she is in the mood)

I'm very glad we are part of the BU study. It's the kind of study I heartily support---not one that is aiming to figure out WHY she is autistic (and unspokenly, figuring out how to prevent future autism) but one that is trying to figure out the autistic mind---for that is indeed also my main task in life---figuring out Janey.  It's going to be a lifetime study on my part, and one worthy of the time spent.

One morning with Janey (and thoughts about progress)

Janey woke this morning at six, which is a pretty typical time for her.  She's been sleeping better lately, or I should say she's in a good sleeping phase, as that goes back and forth.  She woke up cheerful and singing, which is the case about half the days, and is more the case if she wakes up after having crawled into bed with Tony and me during the night, and one of us is still in bed.  I think she has a fear of being alone.  She got up and right away started her morning list of wants "Strawberry milk, please!  Toast and butter, please!  I want bacon!  I want oatmeal!"  Breakfast is her big meal, and she ate most all of those!

After eating, Janey wanted some videos, and I put them on, and changed them at her will.  She is less into Netflix lately, probably because we were having some kind of problem with the remote for a while, and it wasn't responding to her button pushes, which made her very upset.  So now she is relaying on good old fashioned VHSs, which don't fail her much!  After a bit of watching, she fell back asleep, which is another new pattern for her.  It makes it a little tricky getting her ready for school.  I put it off until the last possible moment, but she is still very annoyed when I wake her to get dressed.

Dressing goes fairly well, and hair brushing relatively well.  Janey doesn't care for her hair being brushed at all, but she now tolerates.  I say most days "I'm going to be extra gentle today" and if I skip it, she's say "EXTRA GENTLE!" and remind me.  I got her teeth brushed and her coat on and we got out the door.  However, Janey suddenly ran back in and got a book she'd been into lately---a Wo Wo Wubsey book called "A Tale of Tails"  I asked her if she wanted to take it in the car, and she excitedly jumped, happy I'd figured her out.

The ride to school was great, as it's Christmas music season!  We listened to a Boston Pops singalong of modern Christmas songs, which ended with a big doing of "Jingle Bells"  Janey was clapping and smiling and laughing, and I loved seeing it.  She was so thrilled just to hear the songs she knows, and appreciative of the arrangement.  I love seeing her enjoy music!

When we got to school, Janey insisted on bringing the book in with us.  That made me very happy.  It's recent she's falling in love with certain books, and I couldn't be more thrilled.  I have used the methods I used with the boys over the years to try to get her to become book obsessed---having many, many books around the house, always dropping everything if she wants to be read to, leaving books she might like where she'll find them on her own, instead of trying to force her to listen to them, and not treating books like they were made of glass---letting them be as freely used as toys would be (A million thanks to Mary O'Grady Leonhardt, whose book Keeping Kids Reading has inspired me so much so many times---she reads this blog, and it's to me like having one of my idols read it!)  These methods seem to be finally paying off with Janey, and she's developing a huge attachment to some books, and wanting them read over and over.  With the recently discovery she can at least read some, this means even more to me.

Janey walked into the school with a smile, holding her book.  One of the sweet girls from her class saw her and walked down with us to her room, and Janey entered the classroom as happy as could be, book in hand, ready for her day.

On my drive home, for some reason I started thinking about progress.  On the outside, it might seem like Janey hasn't made a lot of progress over the years.  If you went strictly by test results, by speech, by graphing charts, it would look like she hasn't.  She still doesn't talk much.  She still couldn't pass a test requiring basic preschool skills like knowing shapes and colors and letters.  She isn't fully toilet trained.  She doesn't dress herself well.  She requires watching every second.  She is still very, very autistic.

However, thinking about the morning, I realized that there is actually a lot of progress that has been made, in less tangible ways.  From sleep getting a little better, to her tolerating things like hair brushing, to her letting me know she wanted the book with us, to her love of music being ever more shared with others, to her happy entry into the school and her smile at her friend, to just being more consistent, more predictable, more present---the days are easier than they used to be.  She is still very tough.  If you compared her to other kids her age---well, that would be depressing.  She is still intellectually disabled.  However, through her own maturing and our own increasing ability to understand her, she is progressing.  She's making significant progress, in ways that can be felt more than quantified.  An ordinary morning, broken down, is a series of little moments of progress.  You go, Janey!

Heavy Metal Parodies vs. Identifying Shapes

This morning, Janey was in a talkative mood.  She danced around the house, repeating anything we said and bringing in her own quotes and songs.  It's fun to listen to her when she's like that.  Then, she stopped and sang "Is he dead or evil?" over and over and over.  For those of you who might not be as familiar with heavy metal music as I am (and you are lucky indeed), that was a parody of a part of "Iron Man" by Black Sabbath.  The actual line says "Is he alive or dead?" but Janey certainly captured the essence of metal music. She hears it all the time, due to William being an extremely devoted metal fan and also a budding metal artist, who has recorded three of his own metal albums full of his own songs.

It struck me that although that was cool to hear, it wasn't totally unusual for Janey.  She often plays around with songs and gives them different lyrics.  It's something we all do a lot around the house, for whatever reason, and it's something I do to teach her things---put the steps to a song, or the take-home message to a melody.  Janey can play with music with ease.

That contrasts with some other skills, skills the school and us at home have worked with her on for years, and which she still has trouble with.  She can usually name a circle, now, and her ABA specialist, Mr. Ken, is going to start working with her on generalizing that skill, to name things that are circular, like pizza or cookies or a full moon.  I'm glad she's learning this, and its great to see her achieve.  But it's slow going.  She's been learning shapes for 6 years now, and she hasn't mastered them.  However, some things she learns in an instant, or quite easily.  She learns a new song upon hearing it once or twice.  If I put a new app on the iPad she likes, she immediately knows where the icon is, how to enter it, and either knows or quickly figures out how to play it.  I never sat down and showed her how to raise the sound on the iPad, or to pick shows on Netflix, or how to do many other things she does on a daily basis.  How is it that some things are so easy for her to learn, and some so hard?

Motivation is part of it, but not all of it. She can be incredibly motivated to earn a reward, but still not be able to do the task that earns it.  And her limited speech skills are also not something that can explain all of it.  Limited verbal skills don't usually lend themselves to parody songs.  It just seems like her mind is a patchwork of ability and lack of ability.  It's what makes her mysterious, and what I think makes intellectual disabilities different in people with autism than in other people.  Other kids seem to be able to learn with a slow and steady approach.  It takes them longer, but they get there.  Janey seems to learn in jumps, or not at all.  It feels like I can't teach her, because she doesn't learn what I ask her to learn.  She learns what she decides to learn.  It's frustrating, but at times also fascinating.  I don't see it as there being all kinds of unlockable areas of her brain, particularly.  I see it more as a very unevenly planted garden.  You can water and water, but you're not going to get flowers where none were planted.  However, where they were planted, sometimes they will grow just on their own, without a bit of help from you.

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.

Weekly Work-ons

The last few weeks, I've been posting on the fridge a list of things for us to work on with Janey. We have a color, number, letter and emotion of the week, a command of the week (for example, this week is "be patient"), a body part of the week and a verb of the week. I'm hoping it gives everyone ideas for something to work on Janey with when they have a minute. I've noticed some good results---I've been saying "be patient!" a lot and Janey is starting to mimic it back appropriately, and she seems to like the body part---this week is "leg". I might add a few items---like an animal of the week, a opposite of the week, etc.

Something I think would be extremely helpful, and something I've searched for without success, is a list of skills and ideas to work on with Janey---something like an autism curriculum. Regular preschool curriculums don't work. They assume kids learn just by absorbing things around them---they do project based learning, books with the concepts to learn mentioned, self directed exploring of toys, etc. Janey needs to be specifically taught things. She isn't going to learn just by picking up things here and there. So I would love lists---here's the words she should understand, here's the animals a 6 year old should know, here's some verbs all kids need to learn. I try to make up my own lists, but it's not easy to do. It's something I might try to do someday, and make a web page about, just by winging it, but I am sure there are people that really know how to do that kind of thing. This is all of course to compliment what she learns at school---I'm not her primary teacher, I'm her mother. I don't want to be her primary teacher---if I did, I would homeschool her. But she needs more practice and reinforcement than typical kids, and I want to do a good job with that.

I think this is an area where all the focus on "autism recovery" and similar concepts takes away from educating the kids right here in front of us with autism. I could find a million pages on the web about how to "cure" Janey, but very few about how to work with the "uncured" Janey. What specifically does she need to learn? How can I best teach her? That is what I want to know.