Update Notes

Janey has been at her new school for about two weeks now.  That's far too early to really draw any conclusions, but I think mostly, overall, it's been a good transition.  Or at least much better than I had feared.  Janey is taking the bus quite readily, which alone makes my day a lot easier, and I get some good reports.  Today's report wasn't quite as good---they get a paper which has a circled happy or sad face saying "Today I had a.. (either Good Day or Hard Time), and today, Hard Time was circled, and it said Janey did a great job at recess but had a hard time at working, at lunch and during iPads.  Several other day's reports have mentioned a hard time working, but she excels at recess!  I hope as she settles into the routine, she will work more readily.

At home, things have been tough.  Janey's good spell, which was in full force when she started the new school, is now certainly over.  She is coming home and screaming---screaming at full intensity.  Even Freddy, who stays calmer than almost any of us, was shaken a few nights by how extreme the screaming was.  She does seem to get over it more quickly than at some times in the past, but it comes back often.  We are trying to feed her the minute she comes in the door, and to make bedtime earlier, as I think she comes home tired and hungry.  The screaming also gets triggered lately by ANY television or videos.  Janey seems frustrated by not quite being able to control the TV---it's too complicated with the switches and modes to switch between Netflix, Amazon and broadcast and even old fashioned VHS.  She is happier usually with YouTube, which she seems to be able to navigate more easily.

This weekend, Tony witnessed a bit of a breakthrough.  He came over and noticed Janey had put a long string of "k"s in the search box for YouTube.  He asked her what she wanted to see, and she said "Kipper!"  I do think she was trying to type Kipper.  She did it again yesterday.  It was exciting for us to see her making that kind of association between a word sound and a letter.

I think I had a hope, somewhere in my mind, the part of my mind that isn't terribly realistic, the part that should have learned better by now, that since Janey switched to the new school during such a great mood stretch, she would stay happy for good.  I wouldn't have said that, if anyone asked, but there was some kind of hope, some kind of feeling that maybe she was outgrowing everything tough.  The screaming lately, combined with arm biting and some crying, seem hard to take.  They are always hard to take, but somehow they are harder when I let myself hope, even almost subconsciously, that they are gone.  I know people sometimes see me as a pessimist, because I don't get overly excited when Janey is doing very well.  But the truth is, I'm much more of a hopeless optimist than I let on.  I have to push back those natural optimist feelings, because the fall back to reality is so very hard.

However, there is much good lately.  I remain hopeful we made the move to the new school at the right time---not too early and not too late.  I am hopeful that Janey will start learning more.  I am hopeful that we will continue to gradually understand her screaming and crying better, and respond to it better.  I am hopeful that she will be happier as the weeks and months and years go by.  We are so lucky to have so many people sharing that hope, and working to make it a reality.

Gold in the Ocean

I've read there's lots of gold in seawater. It's there, but it would be very, very hard to separate it from the water.  Do we look at the sparkling ocean and think "Wow, it's so beautiful because of the valuable gold it contains?"  I don't think most people do.  They love the ocean for other reasons.  Lately, I've been thinking about this a lot as a metaphor for Janey's brain.  I think there are amazing things inside her brain.  I think she has ideas, music, opinions, sassy backtalk, arguments, words of love and all the other parts of a child's personality that they share with us when they talk.  But getting all that out?  Sometimes it's like getting gold out of ocean water.  To carry the metaphor further, I don't want Janey to be valued for what might be in her mind.  I want her to be valued for what she is right now.

But what if we could figure out a good method to get the gold out of the water, effectively and safely?  That would be great.  I'd go for it.  But say I tried and it didn't work.  Would I think devalue the seawater?  Would I think less of its beauty, and value, and usefulness?  I hope not.

I would dearly love Janey to be able to better communicate.  I dream of it.  I long for it.  But over the years, she has made very little progress in this way.   This was brought home to me today as  I prepared for an appointment we had this morning to start the process of Janey being followed by the autism team at a big hospital.  I was looking over reports and IEPs and notes from years back, and I was struck hard by how I think Janey talked more at 4, a year after her big regression, than she does now.  Her talking ebbs and flows, but it can in no way be seen as a graph going up.  She isn't talking more as she gets older.  I don't think if she ever will.  This is despite lots of speech therapy, great teaching, Tony and my and the boys efforts, ABA, an iPad, everything we can think of.  There's a good chance we will never, ever hear the great things I believe are in her mind.  They may stay locked in there forever, at times letting us have a little glimpse of the treasure, but for the most part, inaccessible.

I want the world to value Janey just as she is.  But the biggest battle I have is with myself.  I need to truly accept Janey as she is.  I'd like to think I do that, but sometimes, I go beyond just hope to pushing, to probably letting Janey know that I wish she would talk more.  For example, last night Freddy was quizzing me on things he'd learned in school.  For fun, he quizzed Janey too, asking her to tell him a number.  We didn't expect an answer, but she piped up "Like, four?"  I was thrilled, and praised her highly.  I then started asking her lots more things, I guess trying to strike while the iron was hot---asking her to tell me a letter, to point to her brother, to tell me a shape, to spell her name, to give me the names of the cats----none of which she answered.  And as I watched her face, it turned from happy to confused to blank.  She tuned out.  I am sure I showed that I was thrilled by that glimpse of the gold in the seawater.  Do I act as excited when she claps along to her favorite bluegrass music?  Do I praise her for dancing around, for smiling, for just being herself?  I need to.  I need to show her that she is valuable not just for her potential, for what she might be have locked away and lost the key for, but also for who she is, right now.

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!

Looking back on 2012---what Janey learned, what I learned

The year ending is, of course, making me look back and try somehow to sum up 2012, and figure out what kind of a year it was for us all.  In thinking about it, I do think it was quite a year of progress for Janey in some ways, and maybe more, a year of changed thinking for me.

Janey did some real learning in 2012.  The biggest jump was in her use of technology.  Some of this she might have already known, but I realized she knew it.  She can use the iPad with ease, she can pick videos on YouTube when given a bunch of picture choices, she can get to YouTube from a Google pages with an icon of it, she can, as I just recently figured out, turn on my camera and take pictures.  In today's world, being about to use devices like the ones she can is a good sign.  She also learned more academics than in past years.  She sort of knows some letters and numbers, she will do some worksheets at school, she can write J and once in a long time, kind of write her name, she is more interested in books than in the past.  She is still not even at anywhere near a preschool level in most areas, and she might not ever be, but that is more than the past.  The summer featured a toilet training jump forward, which sadly is not still going on quite as well, maybe with the need for winter clothes and our increasing insistence that she keep clothes on, but she does use the potty at school on a semi-regular basis, and sometimes uses it at home.  In the summer, there were days when she used the potty almost all day.  She also seems very slightly to understand her feelings more.  She is learning the words for sad and angry and happy, and uses them once in a while.  She cried less this year than most---there were still long crying days, but certainly less of them.  She learned to ask for songs in the car by name, and to say "do you like that song?" quickly at the end of a song to ask me to play it again.  She usually comes back when I scream "Janey!  STOP!" if she runs from me.  The mischief Dennis the Menace phase last year has certainly lessened, although it still happens at times.

Of course, there were still a lot of frustrating areas.  I don't think Janey's talking improved at all.  She still uses speech strangely and not that well.  She asks for things, usually with pronouns reversed "Do you want a Kipper video on?" and she repeats things, with delayed echolalia still being the vast majority of what comes out of her mouth.  She almost never answers us.  She still gets frustrated hugely and cries instead of communicating often.  She has gotten bigger and looks more autistic than in the past.  She makes a sound while out in public almost all the time, her "ahhhhh-ahhhhh" sound, and flaps her hands and pulls on her eyes. People pretty much always know now she is "different".  She relates very little to kids her age.  She tries to take off her clothes at home almost all the time.  Her sleep if anything is not as good as it was.  She goes to sleep too early often, and wakes way too early. She puts things in her mouth, more than ever, actually.  Constant vigilance is required to make sure she's not mouthing anything dangerous.  She occasionally hits me, harder now that she is older.  She has days where she makes constant demands, and is furious if we don't immediately obey her.  She is still very, very autistic.  The diagnoses of low functioning autism and intellectual disability are very accurate.

And what did I learn?  I think the biggest lesson I learned was to truly feel and believe that I am the expert on Janey.  The visit with the developmental pediatrician was a turning point for me.  I realized that she did not at all know what was best for Janey, or she decided what she felt was best through a very narrow viewpoint.  I understand Janey as well as anyone can understand her.  I am no longer thinking in any way there is some expert out there who can teach me about Janey, can help me help her.  I don't think such an expert exists.  If one does, I certainly haven't found them.  I don't mean there aren't people who can teach her, can love her, can take wonderful care of her.  There are---her whole school staff, basically.  But in terms of someone who is an autism expert and can tell me how to get more out of Janey, how to "fix" her or modify her behavior or figure out what makes her tick---I am that person.  I am the expert on Janey.  It's a lonely feeling, but it's a freeing feeling too.  I've not ever been the kind of person to search for a cure, but I have believed there are people that have seen Janeys before, that can tell me what her outcome will be, can give me gems of advice that will make her life and my life easier.  I'm pretty sure now there isn't.  Like all kids with autism, like all kids without autism, in fact, she's one of a kind.  And because she's one of a kind out at the edges of the bell shaped graph, each of her traits has less other kids sharing it. People can help me teach Janey, can help me care for her, and can share my love of her, but in terms of understanding her---that's all Tony and me.

I want to add a thank you to everyone who reads this blog.  Your friendship, comments and thoughts mean the world to me.  When I write here, I feel so much less alone, and I hope I have done the same for others.  To everyone in the autism family, and those who love someone with autism, all my heartfelt best wishes for a very, very happy 2013.

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.