Celebrating Autism Day by going all AAC

I'll just call it Autism Day, without putting an "awareness" or "acceptance" or anything else on it.  Autism deserves a day, and it doesn't need any modifiers.

Proloquo2go

I'm starting something new this Autism Day.  Janey has never shown much interest in AAC apps (Augmentative and Alternative Communication).  This year, however, her school has been using a program called TouchChat to has her say certain things, like to help her ask other rooms if they have any recycling or to help her participate in morning meetings.  Reports were she showed some interest in it, and I decided to go for it---to really try to do AAC at home.

TouchChat

The first thing I needed was a more up to date iPad for her, and the very kind gift of a dear friend helped us out there and allowed me to buy Janey a brand new one.  She still is using the old one we got her, and that thing has been through hell and back, protected with a Gumdrop cover.  That is one product I will recommend to the stars and back.  So I've ordered a cover for the new iPad.  Today, since it's Autism Day, a lot of AAC programs were on sale (although not TouchChat).  Since we got the help with paying for the iPad, I decided to toss caution to the wind and buy 3 different AAC programs---TouchChat, ProLoQuo To Go and Aacorn.  The last two were on a good sale.  I figured I'd fool around with them some before showing them to Janey, and see which she likes, or if she likes a combination.  

Aacorn

So far, after just a little bit of testing by me, I really like Aacorn.  It is set up in a very kid-friendly way, and had a great tutorial.  But that's an extremely early observation.  I'll be writing about our AAC attempts in days to come, I'm sure.

How am I celebrating otherwise?  Well, Janey will get her trip to the ice cream store when she gets home, and we'll watch some videos, and Daddy will probably make her some soup for dinner, and we'll snuggle at bedtime.  There might be a car ride, too.  Nothing much different than what we do every day, because in a way, every day is autism day here.  We've figured out the routines that work, mostly, and we don't stray a lot from them.

I'm not going to try, this year, to say anything summing up or meaningful or awareness-raising for this day.  Part of that is just tiredness.  Part of it is a growing realization that thinking about autism as one entity, one type of life, is like calling all different kinds of fruits just "fruit".  There are way too many ways autism shows itself, way too many different variations, to be able to say much about the autism community in general without over-simplifying.  I can talk about Janey, and I can talk about our family, but I can't really speak for others in any general way.

I can, though, sent out a special wave of love to everyone out there with a life that includes autism, whether it be those who are autistic themselves or those who love someone with autism.  Happy Autism Day!

YesNo for iPod --- discovered in desperation!

Janey's crying was less today, but this afternoon started to return.  One thing we always worry is that Janey hurts physically someplace---that she has a headache or a stomach ache.  We were trying to ask her that, which she sometimes answers.  We've asked it by asking her "Do you need hurty medicine?" (meaning Tylenol) which she will answer.  Today, though, she was screaming so much that she couldn't answer, and I was hugely frustrated, thinking that there should be a simple way for her to just push a button to say yes or no.  I got on the app store looking for such a thing.  I looked briefly at hugely expensive speech apps, knowing I couldn't afford them and certainly couldn't learn them in a few minutes.  Then I found this app

Answers: YesNo HD

It was $3.99, and it looked very easy and like it would do what I wanted---just bring up a Yes/No screen.  I bought it in a frenzy, opened it and found the default setting was indeed just a yes/no answer.  I went back to Janey, asked her if she needed hurty medication, and showed her the screen, quickly hitting yes and no to show her how it worked.  She immediately hit the "No" button.  I then asked her a few other questions to see what she'd do, like did she want a hug, did she want bacon (which Tony was in the middle of making), etc, and she answered "yes".  I asked the hurty medicine again, and she said, again, "no".  So we had our answer!

It always feels weird to me to use software like that when Janey CAN talk.  But she can talk in certain contexts, and she also seems to have a very hard time with "no"---she answers yes or nothing at all.  I often find myself holding out two fists, labeled one "yes" as I wiggle it and then the other "no" as I wiggle it, and letting her pick a fist.  That seems to work for her.  I could still do that, but this seems like a more independent way for her to talk.

Looking at the software a little more, I saw you can make other easy choices available.  I quickly took pictures of Tony and of me, and gave her a "Mama/Daddy" choice button.  Just now, she said she wanted to cuddle.  We usually assume that is with me, but we gave her the choice and she picked Daddy, so that is what they are doing.

Janey's teacher this year and her ABA specialist are going to work on augmented communication, and I am very excited about that.  I think it might be a huge help to Janey, and something that might ease her frustration.  She is still crying today, but for about 10 minutes after first using the Yes/No, she was quiet and happy.  I'm going to try to add some more choices soon.  Even if it only helps for little bits of time, that's better than anything I tried yesterday.

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!

The other frustration

Lately I've been experiencing what for me is a new kind of frustration with Janey---frustration with her intellectual disability.  I can honestly say until this point, I was not bothered by her retardation.  I still am not, nearly as much as I am with the autism and the resultant behaviors, but I'm starting to feel that frustration, just a little.

Mainly, it's just not getting how she learns, or how she doesn't learn.  A good example is an app she was trying to do on the iPad last night---Jumpstart Preschool.  It's a little beyond her, but she's interested in it.  There was a matching task---you click on kites or umbrellas or something, which reveal a capital letter, and you need to find two that match, like Concentration.  She seemed to somewhat get what it wanted her to do, but she couldn't seem to get that she needed to try new kites if the first two didn't work.  She sat there clicking the same two kites for about 15 minutes.  I didn't jump in to help---I was trying hard to not do so, to see if she'd get it.  I don't think this was a case of stimming with the sounds.  I think she really wanted to do the matches, as when I finally jumped in and did one for her, she was delighted.  But she didn't or couldn't make the mental jump that would have told her---you need to click around to find the right letters!  Today, we were trying a math program her school uses---First in Math.  They had kind of a trippy game, where a slot machine looking bar showed something like two blue stars.  Floating around below it were all kinds of shapes in different colors.  You had to put a blue star with the other two blue stars.  Janey did understand this, and a few times, did it perfectly.  But other times, she put a shape over the shapes that were already there (which I don't think the program should have let you do) and then, she seemed to be totally thrown off, and kept putting the right shape over the wrong shape in the area where she'd get no credit for it.  She would do the same thing about 10 times, without seeming to realize that she had just done it right a little earlier.

Both those cases show the frustrating part.  It wasn't that Janey didn't get what the task was asking, I don't think.  But she wasn't able to make the mental corrections and steps to get it right.  It might have been a matter of motivation, but I don't think so---in both cases, she liked a lot how the program reacted when she got it right.

It struck me watching this that I would never, ever be a good homeschooling teacher for Janey.  I've realized this with my boys (although they made it very clear that had no desire to be homeschooled!)  I get frustrated far too easily.  I don't know how to teach, especially how to teach Janey.  There is probably a method that would work better than ones I try, but I don't know what it is.  And I just start thinking "How can she not get it?" and I know that's mean.  She doesn't get things because her brain is not set up to get them.  I don't believe it's all hidden in there someplace.  I think her brain has severe functioning problems.  She is able to use the parts of her brain that aren't as affected---rote memory, for a big huge one, and music, and gross motor skills and even fine motor skills in terms of technology---it was not that she couldn't manipulate the mouse at all.  But she can't learn new patterns easily at all.

I can accept in myself that I get frustrated with the autism.  No-one on earth, I don't think, could hear Janey's hourlong screaming spells and not be upset.  But the learning delays---I feel like I should have more patience.  I feel horrible that I get frustrated with that.  I guess it's an area where I should instead feel very grateful to her teachers and therapists, who have the patience in that area I do not.  And I do feel that gratefulness, but I wish I had that gift, the gift of teaching.

Hodge Podge Lodge

The title is a TV show that was on when I was very young, in which a woman who to me looked like a witch had kids over to her hut in the woods and showed them nature things, like cocoons.  But that doesn't really have to do with this post, although I always wonder if anyone but me remembers the show, or if I just dreamt it.  I meant the hodge podge part, a few little notes about this and that to do with Janey.

HP1----  Janey has gotten into Snow White and the Seven Dwarfs.  I've never really watched it before now, and it's a beautifully done movie.  It certainly has scary parts, like The Little Mermaid, but somehow they seem less terrifying, and I'm glad she made the change.  Today she brought it over to me, and wanted to watch it, but couldn't think of the name.  She spoke in that special tone she uses when she is having to think very hard about what she is saying, and said "I want Beauty and the Beast"  Which is very strange, as she's never seen that movie, only clips from it on singalongs.  But it's another Disney movie, and I wonder how the two got connected in her mind.

HP2 ----  This morning, when walking from our parking spot to school, Janey pulled me into a grassy lot near her school, because there were piles of fallen leaves there.  She wanted to kick them as we walked.  I loved that.  It's a universally fun thing to do, and one of those moments where the autism makes no difference.

HP3  ---  A few days ago, Janey was in silent mode.  That's an unusual mode for her, I mean a really silent mode.  She is usually noisy---either laughing, crying, echolalia talking, singing, pretty loud for a mostly non-verbal gal.  But those days she was just silent.  When she did talk to ask for something, she whispered it to me in a barely audible voice.  I really didn't like the silent days.  It threw me into a bit of a depression.  I'm not sure why.  Our family is fairly loud.  Not me on my own, but I've become loud in defense.  We shout from room to room, have animated "discussions" often, sing to ourselves---there are not a lot of quiet moments around here.  And I guess Janey usually fits right in with that.  Having her be so quiet scared me somehow.  She seemed very lost.

HP4  ----  I wonder how often Janey pretends not to know something to get out of doing things.  I used to not think this at all.  But today for some reason, I was showing her an app with aliens, where you had to match the color of the aliens to a space ship that showed up to take them away.  She wasn't a bit interested. She just kept asking for Angelina Ballerina.  But for some reason, I wanted her to try it.  So I said "First match the blue alien to the spaceship, and then I'll put it on" And she did it in a second, with a look on her face I am very familiar with from the boys---the look of "O---KAY!  I'll do it to shut you up"  She had no problem at all with it.  I was surprised, although I know she can do color matching, but the ease and the look were something else again.

HP5  ---  Not that I ever plan on getting a nanny, but reading about the horrible situation in NYC where a nanny killed two of the children she was charged with caring for, all I could think about was why it's so important to me to have Janey be in my care, my husband's care or her school's care, or that of very trusted family and friends.  Not that everyone doesn't feel that way.  But caring for Janey can be incredibly frustrating.  You have to love her to care for her well.  I couldn't hire someone to do that.  And at school, there are many hands to help.  Everyone who cares for Janey there loves her, but if they get overwhelmed, there is someone else there to take her for a bit.  It's another thing that makes autism parenting tough---I know Janey could try the patience of saints sometimes, and that I need to always make sure she is with someone I can completely, totally, wholeheartedly trust.

HP6  ---  I just did what I am always telling Tony not to do---let Janey have a little chocolate after noontime.  No sleep tonight!

Ten iPad apps Janey likes

Notice here I didn't say "Ten iPad apps Janey has learned a lot from" or "Ten iPad apps I like".  Over the year we've had the iPad, I've realized if Janey doesn't like an app, it does no good.  It can be the greatest learning app on the face of the planet, but Janey's not going to use it at home unless she likes it.  She knows very well how to use the button to take her back to the menu of apps, and she never hesitates to use it freely if something doesn't interest her.  However, the few apps she likes get used a fairly lot.  Not a HUGE amount.  I wouldn't say the iPad is quite the success with Janey I'd dreamt it might be.  She likes it, but as a toy she turns to now and then.  I think she's learned a little from it, by chance, when an app that appeals to her just happens to have a learning component, but it hasn't been any huge breakthrough devise for her.  That being said, I'm glad I got it for her.  Any toy she actually uses and enjoys is a good toy, and the rest of us have fun with it when she's not using it.  Anyway, here's the list, with links when I can find them!  (in no particular order)

1.  PianoBall

This is a simple piano app.  You get a keyboard that kind of looks like a xylophone, which you can change the color and tone of with little balls above the keyboard.  It plays various simple songs, and has a mode where little stars sparkle above the key you need to play next.  Janey actually does this now and then, but mostly just fools around the colors and keys.  I thought keyboard type apps would be Janey's favorite part of the iPad, but that hasn't really proven the case.

2.  Fish School

Schools of fish form the letters of the alphabet and numbers.  You move to the next letter by swiping across the screen.  This was the first app Janey got into, and she still likes it a fair amount.  It's nice and simple and colorful.

3.  Christmas Song Machine

This app would most certainly not be on MY favorites list, but I would say it's Janey's all time favorite.  It features kind of animated scenes playing with a background of Christmas songs being sung fairly badly.  You pick the song by a somewhat complicated process in Santa's Workshop, which Janey mastered easily, as she does with most things that that she really likes.  If you are into hearing O Holy Night sung annoyingly and repeatedly in mid-July, this is your app.

4.  Elmo's Monster Maker

This is a cool app with a lot to it, but Janey doesn't use it the way it was intended.  You pick a blank monster, and then pick eyes, a nose and a hat for him or her, and the monster comes to life.  The choices change seasonally---there are Christmas ones, there were ones for the Olympics, etc.  However, Janey likes the monsters blank-faced, which you can do, and she then makes them dance to various types of music---disco, Mexican and so on.  She does this over and over and over.  I've often tried to interest her in the faces, but that is not the point for her.  You might have better luck!

5.  Starfall ABCs   

This app is like one that is on the internet, and Janey played it first there at school, and was delighted to find it at home.  You pick a letter block and the app shows a few things that start with that letter.  Some of the letters have little activities, too, like filling in the letters to spell "camp" and getting a camp song.  Janey knows the letters she likes and picks them out, but otherwise, I am not so sure she learns a lot from this.  She enjoys it a great deal, though.

6.  Firstwords Christmas

This one actually DOES teach.  I was thrilled when Janey got into it.  You get mixed up letters of a word, and have to put them in the right place, like a puzzle.  When you do, the app says the word and moves a picture around, and makes a sound.  Janey has played this for hours.  Over the year, I've seen her ability to match letters increase hugely, partly because of this app.  There are all kinds of other Firstwords apps, but Janey is a big fan of Christmas things and likes this one far better than the others.

7.  FindMe (autism)

This is the only app specifically designed for autistic kids that Janey has gotten into.  You find a little boy in an outdoor setting that gets increasing busy as you get better.  When you have found him five times, you get a dancing shapes reward.  Whoever designed this knew exactly what would motivate autistic kids, as Janey will play this for a VERY long time to get that reward, which to me looks very boring, but to her is the ultimate treat.  I wish this game moved on beyond finding the boy, which Janey has gotten extremely good at.  If she had to find letters or numbers or shapes, I think she'd be motivated to do so.

8.  Noodle Words

This is a very, very well designed and cool app.  You open a magic box of words, pick a word, and then play with the word.  For example, "surprise" lets you get all kinds of surprises by touching it.  There are little guys at the bottom of the screen that interact with the words.  It's a nice clean looking screen graphically, so the word stars, and I think Janey has learned to recognize which words she wants to play with.  I wish they'd expand this to much more words.

9.  GoFun

Here's one of those "why in the world does she like this?" apps.  It's a puzzle app.  You pick a picture and then it turns into a puzzle to do.  The problem is that the puzzles are very badly done---with strange divisions into pieces and not great pictures.  Janey is obsessed with one of a leprechaun, and does the first few pieces of it over and over.  She never finishes it.  There are lots of puzzles, anyway, including a bunny one and a clock one she's done now and then.  I've downloaded all kinds of better puzzle apps, or better in my eyes, but they have no appeal to her.

10.  Working on the Railroad

Another app I wish was better, but one Janey likes a lot.  It consists of a video of the song being sung, and then a few "learning games"---putting shapes into, for some reasons, large letters, simple puzzles, etc.  The song is sung nicely and I think having it in the background during the activities keeps Janey working on them, but I wish there were more of them and they were a little better designed.

So there's her list.  This is no means a list of the best apps I've found.  There are many fabulous apps out there, often for free or for very small amounts of money, which is what I love about the iPad.  I'd love it even more if Janey liked more of those apps.  If someone could design a learning app that would truly appeal to autistic kids, they would be a hero in my eyes.  I'd love something that combined the appeal of FindMe with the design of Noodle Words and the letter learning of FirstWords, with music that is well done like in Working on the Railroad, and depth like GoFun.  If there was an app like that, and it was expandable, I'd pay pretty good money for it, and I'm sure a lot of schools would too.  But the designer would have to actually understand autism, or at least Janey's form of autism.  They'd have to get that autistic kids won't work for rewards they don't want, that music and moving objects are a huge draw, that repetition has to be a part of it, but with very gradual changes build in so the kids can't just do the same thing over and over for hours, that you have to design with the kid in mind and not the parents.  You can make a beautiful, full featured, amazing app that kids with autism will never touch, if it doesn't appeal to them.  Or, sadly, you can make a slapped together stupid app that for some reason appeals to autistic kids, and they will play it for hours.  That's life in Autism City, I guess.

Further thoughts on iPad apps and autism

Janey's had her iPad a while now. I would say it's a moderate success. She certainly enjoys playing with it, navigates it well and seems to be calmed by it. She is probably learning from it too, but it's not a huge, huge step forward, although I can see how it might be for some kids.

The big thing is finding the right apps. Janey likes some very specific things in an app. The big three words are PREDICTABLE, SIMPLE and REWARDING. The apps have to be without huge surprises. Janey likes to know pretty much what is coming next. They also have to be simple to use. They don't have to be one touch simple, but they can't have all kind of menus and choices, or she just gives up on them. They also have to be rewarding. This is the big problem with some of the autism-specific apps. They are SO simple and predictable that they are boring. Nothing happens that would make a kid keep playing. They seem like they might be good to use at school with someone human present to give rewards every now and then, but Janey just isn't motivated to keep going with them without something happening she likes.

Those things being said, I'm a little surprised at the type of apps Janey uses the most. They are far more educational than I would have guessed she'd pick. She likes ones that involve putting letters in place to make a word, or counting items. I thought she'd like music apps more, and she was very taken with a few Christmas ones, but in general, her taste in music is more sophisticated than the jingle-jangle tunes most kid apps seem to have.

Here's a list of five of her favorite apps!

Whizzit 123

This is a simple counting app. A number of the same item show up on the screen, and once each one is touched, the item changes somehow, such as a pinwheel starts to spin, and it's not able to be touched again, so you learn to count one thing at a time only once. Janey likes the smaller numbers of things on a screen. If a screen shows up with something like 15 flies, she knows how to go back to the start and get another screen! When she does successfully count everything, the game goes to the next screen. Janey loves the start screen for this app, too---it plays a song she likes!

FirstWords Christmas

There are a whole bunch of FirstWords apps, and Janey likes them all, but she likes this Christmas one best, even now that Christmas is over! A screen comes up with letters scattered about, like tiles, and you have to move the tiles into the right place to form a word. The word is already there, you just have to put the tiles over the letters. There is a picture on each sceen, and when you finish putting the letters in place, the picture spins around and makes a sound, and the next screen comes up (this is a crucial point, as if the next screen of something doesn't come up quickly, Janey loses interest). Janey loves doing this one for long, long periods, and has gotten noticably better at quickly moving the letters into place.

Find Me

This is the only specifically made for autistic kids app that Janey has gotten into, and it's a very good one! A boy shows up on the screen, and a voice asks you to find him. It starts very simply, with just the boy on the screen and nothing else, but very gradually, there's more in the background, like butterflies and trains and flowers, sometimes moving. Once you find the boy 5 times, a screen comes up with a music-box like song and shapes dancing around. This is the kind of reward Janey likes---it doesn't vary, and it's interesting enough to keep her playing, and she also seems to really like finding the boys, and how each time finding him is a little harder. Whoever wrote this app seems to really get kids with autism.

Zoo Train

This is a Busy Bee Preschool app. It has several parts, but Janey has completely no interest in anything but the word train part. In that, a train with a flatbed comes along with a word on it, and letters that need to be put in place, pretty much like the FirstWords app. Once you put them in place, the item shows up on the flatbed, and the train moves out of the station, saying the word as it goes. Janey likes trains fairly well, and I think she likes the movement. What she doesn't like in this one is that for every 5 words, you get a reward screen where you can pick a sticker. This disrupts her flow, and she has no interest in picking the stickers. She reacts as she often does to things like this---she goes back to the app selection screen and starts over, hoping to get past that part. It makes the app not that engaging, but she seems to like it enough to keep going back to it.

Peek-A-Zoo

This is one of my favorites, and Janey likes it moderately well. It shows a screen of 8 cartoon animals, and a question comes up, spoken and written, like "Who is Sleeping?" You have to pick the right animal, and then he comes up and makes his sound. This is very well done, and I think could be huge for autistic kids, but some of the questions are too abstract for Janey, like "Who is trying to hide?" where you have to find an animal that is fading in and out---she just doesn't seem to get that. But the music and the simplified pictures are enough so she plays this a fair amount.


I think there is still a HUGE world of apps to be written out there for autistic kids. I don't think anyone's written the "killer app" yet. I wish I knew how to write apps. I'd love one that could use your existing music collection as a reward. Janey would do a lot more to get to hear her favorite songs, like "Tie a Yellow Ribbon Round the Old Oak Tree", but kids apps just don't often contain songs about people getting out of prison. I'd also like a look-see reading app. I'm all for phonics, but for Janey, it's not how she's going to learn to read, if she does. I'd love an app with two words to choose from, and a reward if you pick the word that is spoken. I'd also like an app with two faces showing a feeling shown (photos) and you have to pick the correct emotion.

Overall, if you have an autistic child and can swing it at all, I think an iPad is worth it. Not a must-have, at this point, but worth it.

More thoughts on apps and autism

Many thoughts have been whirling around in my mind as I watch Janey interact with the iPad. A big one is---I think a lot of people don't get what drives kids with autism. There are two big traits that I think most kids with autism have, or at least that Janey has. One is a love of predictability over novelty---a lack of curiostiy. The other is a lack of motivation to do anything just to please others. In creating an app that really appeals to kids with autism, I think these have to be kept in mind. Janey isn't going to keep trying something just to see what happens. Many apps depend on this---the reward is getting to a new level, seeing or trying something new. This doesn't appeal to Janey. The reward needs to be something she can predict, but still likes. A good example of an app that works for her is called First Words Christmas (and there are other First Words apps too). You move letters into a word---for example, in "tree", the word tree is written, and the letters in tree are scattered about, and you have to overlay the "t" on the "t" in tree. When all letters are in place, a little music plays and the tree picture moves around. To me, it seems like a pretty boring reward, but Janey loves it. She loves the predictable routine, and the mild reward. Another good part of this app is once you finish one screen, it moves automatically to the next. Even if Janey is enjoying something, if given a chance, she might hit that very tempting menu button and go back to the general menu, if the next activity isn't put up there fast.

This has made me think about the possible overdiagnosis of autism, and the difference between having some cognitive delays and having autism with cognitive delays. If Janey was just delayed without the autism, a lot more apps might appeal to her. She might like the ones that allowed creativity, the ones I download in vain, drawing ones and sticker ones and the like. The curiosity and enjoyment of the free form would draw her in, and she would learn from them. But with autism and the delays, you lose that crucial piece. She has little curiosity. She likes her fun to be fun she's expecting.

I use a trick of quickly showing her apps she might like, and playing them a little in front of her, while she physically tries to move my hands. Then I go to the menu and click on the icon a few times, just to show her how to get there. This makes the app familiar to her, and once in a while, she goes back to it.

Janey got hung up on an app called Starfall Snowman. Starfall ABC is one of her favorite apps, and a great one. I thought she might try the Snowman app, which allows you to make a snowman and then hear a little story with your snowman featured. She liked it, but for a different reason. She'd hit "make a snowman" and then right away hit the X button to exit, and the app would say "Goodbye!" in a voice she loved for some reason. She would do this over and over and over for an hour, just to hear the Goodbye. I decided to delete the app, as she wasn't doing anything else on the iPad and I frankly couldn't stand it any more. The next time she went to play on the pad, she coudln't find the icon, and searched and searched in vain. It was so bad that she had to ask. She said "I want snowman game". I couldn't resist that, and put it back. I then sat there while she played it for about another hour, over and over. A few times, she hit something else by mistake, and very, very gradually, she started to try those other things. It taught me a lesson---I have to let her sometimes discover things on her own, and she will, just not at a normal pace. She doesn't watch the exact same videos every day, she doesn't eat the exact same foods. She does try new things, but very gradually, and I need to respect that.

Overall, it's been a good month or so for Janey. It was hard for me, as Tony went away on business for two weeks, but we all handled it, and it's great to have him back. I think for the first time in quite a few, I feel hopeful about Janey's progress. She is learning at school and at home, in her own extremely quirky way. It's good to see.

iPad update and sleep talk

Overall, I would say the iPad is a success. Janey really likes it, and that is something huge. It's very rare that she likes any object enough to actually request it and use it, except videos. I put lots of apps on, so she would have a greater chance of finding some she liked. Her favorite probably is called "Interactive Alphabet". It has an interactive picture for each letter, and is easy to navigate. The pictures engage her, especially a jack-in-the-box and a robot. She also likes Make It Pop, which has popcorn, balloons, bubbles and fireworks you can make pop. The popcorn counts as you pop it, the balloons have letters in them, etc. Both of these illustrate what is hard to find in apps. There are many great learning and special needs apps out there, but most of them require an element that Janey just doesn't have---a desire to learn new things. They might reward you with some little sound or picture for doing what is asked, but it's no-where near enough to make Janey choose to spend time with them. It's what always confuses me. It seems like many people developing programs for autism just don't get that part of autism, or Janey's form of it. She is not eager to please, or eager to learn, or eager to get to the next level. She likes what she likes, and she will do the same thing over and over until she masters it. A good app will have to sneak in learning, or have a built-in reward that is big enough to make her interested.

The other thing that has bothered me a bit is how expensive some of the autism related apps are. The "regular" kid ones are 1-3 dollars, mostly, but a lot of the autism ones are more like 20-200 dollars. It's something I've noticed so much---"special" toys and apps and programs cost so much more than "regular" ones. Is it a prerequisite to have a lot of money if you have an autistic child? Or does someone like taking advantage of how desperate a lot of special needs parents are?

The best thing about the iPad so far is how it calms Janey down when she is screaming and crying. Four or five times, I've brought it over to her in the middle of a fit and started playing it myself. She is interested enough to stop crying and play. That's worth the cost, right there.

And the sleeping? It's something I need to get a handle on. Night before last, Janey went to sleep about 7 and woke at 1am, and never slept the rest of the night. My husband was away on business, so it was all me, and it was hell. It's a special kind of torture to have to stay awake when you are desperately tired, because if you don't watch your child, they will wreck the house and hurt themselves somehow. I napped a lot during the day, and reports were she actually had a good day at school despite the lack of sleep. Her need for sleep is not normal. Some days, she sleeps a HUGE amount, others, very little, and she doesn't seem affected by either the way you would expect. It's an example of internal factors affecting her more than external ones, as often seems to be the case. If she is manic, she just doesn't need the sleep, and us wanting her to sleep makes no difference. I don't know how single parents do it. If you know a single parent with a special needs child, you will be doing your hugely good deed for the year if you can give them a little respite, or even just let them know how hard it must be for them.

iPad

I thought I'd update some on the iPad, as there is so much hype out there. I feel like it's the first big autism "cure" type trend I'm in the middle of. Of course, no-one is saying it's a cure, but it sometimes feels that way. I think that's why I resisted getting one.

So far, it's fair to middling with Janey. She loves the Starfall app. I'm sure that's because she's used it a lot at school, and so there are no surprises there. What impresses me is how well she can navigate it. I didn't realize she would be that skilled at moving from screen to screen, and getting back to where she wants to be. Mostly, she wants to see the same screen numerous times, and to do that, you have to go to the next screen and then back, or restart the program. So she's learned to do that with ease. It makes me a little hopeful about her future use of technology. She does "get" it in some ways.

However, I put lots of other apps on there (it's amazing how many great things you can get for a dollar or two) and she has little interest in them so far. I'm trying hard not to push them. I try to remind myself that she doesn't interact with things the same way I do. I'd be driven to try each one, to see what each one did, but she doesn't have that urge. And if I try to direct her, it either makes her less interested or doesn't affect her at all. I guess in some ways, that's like all kids. So I am trying to casually play with apps I think she might like, without talking or comment, to spark her interest.

It's an amazing piece of technology, but it's not the miracle devise for autism people want to think, at least for Janey. It does seem to work well with the way she likes to interact with things, and it is teaching her computer use skills. I can see her using more apps on it in the future, hopefully. I'm not sorry we got it, but in some ways, it can be depressing to try something that gets so much hype. It's the history of autism treatment, I think. It's because Janey and kids like her do have those strange, compelling moments of clarity, the splinter skills, the times when they are fleetingly so "normal". Even though I know very well otherwise, sometimes I can't help but be taken in by the wish that we will find the right key and unlock the "normal" Janey. And of course there isn't one. What there is is my own Janey, my beautiful mysterious girl.

Cheerier, and no miracles

Janey got out of her last crying spell fairly quickly. I'd say it lasted a week, and by last Friday, she was very, very cheerful---not manic, but cheery, smiling, talking---great. This weekend was terrific too.

Tony and I thought and thought and discussed and discussed and finally decided to get Janey an iPad, with the only respite money we've ever gotten from the state. We got a one time $500 last summer, and I had saved it thinking I might use it for the iPad, and then had pretty much decided not to, and then with all the 60 Minutes buzz, we decided to get it. It came down to it being worth a shot---that we figured it couldn't hurt, and we didn't want that money frittered away on small things for her. So we bit the bullet and bought one. I spent a long time looking up apps that would be good. I was a little surprised that the main communication app that was shown on 60 minutes costs in the hundreds of dollars. I can't afford that. But there are quite a few free apps, or ones that cost 1 or 2 dollars. I got both autism apps and toddler apps, as Janey functions at about a toddler level in terms of computers.

There's not going to be any miracles for her with the iPad, I know. She likes it okay, and from using it at school, can find her apps on it, open them and sort of run them. But interactivity is not her thing. She likes to watch passively. I didn't put any books that get read to you or videos on, on purpose, but the main thing she's done so far is go to Starfall, which she uses at school, pick the K and have it play a kangaroo hopping over and over and over and over again. I guess there's skill there---she must know what the K is, but it has no real usefulness---I don't think she could find a K in another context. She also likes a game called Fish School, where just by touching fish they rearrange themselves into the letters. What she REALLY loves is hitting the button that makes you back to the menu, and then rapidly hitting the app button she likes, so going back and forth between the menu and the app over and over. I got the program I saw on 60 minutes, to have her touch pictures of objects to see her receptive vocabulary, and when she was motivated feeling, she did very well. She knows lots of words, like "robot", "remote control", "harp" that she would never say, at least when she has 3 pictures to pick from.

And what is missing here is the desire to really communicate. The kids on the show that used the iPad well WANTED to communicate. Janey gets by, with her few words and her actions, and I don't think she has a strong desire to interact more than she does. I might be wrong. But I think that her mind just isn't terribly set up to want interaction with others most of the time. She likes people that she likes, she is not adverse to others being around, but she isn't dying to tell us all kinds of feelings or desires. I have no idea how to change that. I have no idea how to motivate her, none at all. Her motivation is at the level of finding that "K" to see the kangaroo, but she doesn't have the curiousity that would lead her to see what would happen with the M or the R. If I showed them to her, she might like them, and try them again, but there's no push to find out more. She doesn't want to please us, not that she wants to DISplease us, she just wants to live her life the way that feels like contentment to her. It's frustrating. But how can I change it?

Anyway, it's great she's been happy. It's great to see her smile. And who I am to judge what makes her happy, just because it's not exactly moving her forward?