Every day for a week

 I've been neglecting this blog lately.  Most of that is the whole pandemic related every day feeling the same bit.  It feels like nothing changes, like we are all just in a big holding pattern.  But thinking about it yesterday, I realized actually lots has been happening.  Being with Janey 24/7, we are every day learning more things about her and figuring out more ways to engage her, and understanding more how her mind works.  I've had a lot of thoughts I'd like to share, but I kept feeling like I had to wait to write until I tied them all together and had some perfectly worded way to sum them up.  When thinking about this last night, I realized I just need to write, to get back in the habit.  So bear with me as I start my week of blogs---a little each day!

I'll start with---how are we doing?  Okay.  We're doing, well, okay.  Like everyone else, we are tired of this whole bit, but hopeful that maybe a light at the end of the tunnel is starting to be visible. Janey hasn't been in school in person since March, not a day.  At one point she was offered a hybrid model, which would have resulted in the end in her having about 4 days total in school before it shut down again.  I sensed that the renewed shutdown was coming, and I just didn't think it was worth the risk to send her.  I'm glad I didn't.  Now only a very, very few kids in Boston are going to school, and Janey is not one of them.

Remote learning---well, that' s not easy with Janey.   Her teachers and therapists have been trying hard.  Janey now pretty much tolerates the morning meeting, which lasts about 10 minutes, starting at 8 o'clock.  She will sometimes watch recorded lessons, with varying amounts of interest.  I can get her now and then to do a little bit of work on paper, circling things or listening to short stories.  But it all adds up to vastly, vastly less school than actual school, probably about 1/100th as much.  And no real social contact, no special things like swimming or dance, no time away from her family.  When I think about her being 16, and how limited her life is----well, it's not great.

And from the perspective of Tony and me---that's tough too.  We have absolutely no time at all without fully caring for Janey.  School always gave us a bit of time to breath, to nap if necessary, to regroup.  Caring for Janey is a lot like caring for a toddler in an adult's body, day and night and day and night.  We are tired.  Janey's sleep hasn't been great, to say the least.  About once a week, she doesn't sleep at all, and maybe two more nights of the week, she sleeps very little.  We can kind of catnap while she's awake, but not fully sleep (and I must give a shoutout to Tony, who does the vast majority of the night caring) and Janey wakes us up often to get help with videos, ask for food, ask for car rides, all that.  We are hugely worn out.

But it all could be a lot worse.  None of us have gotten sick, thank goodness.  Janey will wear a mask to go to the grocery store, the one place we go, and Tony takes her there almost every day.  Except for when we were trying hard to recreate school at home, which caused a huge pushback from Janey and some very tough behaviors, she has been mostly cheerful, and often a very lot of fun to be with.  We are getting by.

I'll write a lot more in the week, about Janey's speech, about remote learning, about things I've discovered about how she learns, about music and car rides and siblings and so.  For now, I'm just sending out love to all of you, and hoping you are coping.  Let me know, so we can all support each other!

What the AAC consult said and what I think

At Janey's IEP meeting, I requested she be evaluated by a specialist in AAC (Augmentative and Alternative Communication).  She has had access to an iPad with Touch Chat, an AAC program, at school, and we recently got her a new iPad at home and put Touch Chat on it.  My main goal with all of this is to find a way to decrease Janey's frustration with what I think is word finding problems---when she knows in her head what she wants to say, but can't find a way to say it.  I also just wanted to give her another way to communicate, because although she does talk, her speech is limited.

The consult was done about a week ago, and I got the report this week.  It was a good report---thoroughly done, and I felt the woman who did it got a pretty clear picture of Janey's speech as it stands now.  Her conclusion?  That AAC apps are not something that will help Janey's speech, that in fact, they actually distracted her from communicating functionally.

I was not totally shocked by this conclusion.  There's a couple reasons for that.  One is that for years, I had sort of thought the same thing.  When I had downloaded test versions of several systems like Touch Chat, Janey had no interest, and in fact really seemed to not like the programs.  She even said one time, when I said something like "this can help you talk", a very clear statement "I CAN TALK"  The other reason is that I have been told through the grapevine that the powers that be in the school system (not the teachers or therapists, but the higher-ups) never want to say kids will benefit from AAC, because then they have to pay for iPads or the like.

However, I have to say I don't think I agree that AAC is not a useful tool for Janey.  The main reason the woman evaluating Janey concluded it wasn't is that although she can navigate the system and she show an interest in exploring it, she isn't using it to communicate.  My answer there is---Yeah.  That's why I would like her to get HELP with using it.  It seems like what is being said is something like "She shows she could use it, and she shows an interest, but she doesn't already use it to communicate, so we aren't going to recommend teaching her to communicate with it"  That seems like saying "well, this kid has the capacity to read, and is interested in reading, but she doesn't read yet, so we won't teach her"  It just doesn't seem to make sense.  And isn't exploring a way to learn?  When babies learn to talk, not every single utterance is for communication.  The tester noted that Janey kept pressing the "stop" and "go" buttons, over and over, without a break.  Maybe she was figuring them out?  Maybe she wanted to learn them by repetition?  Maybe she was just having fun with them, and what is wrong with that?

Also, Janey DID, in the presence of the woman doing the evaluation, communicate with Touch Chat.  In the report, she said Janey navigated through a few levels of the application to say "Eat Goldfish Crackers"  However, the reports said that the tester didn't have any edibles with her, and it didn't seem to bother Janey, because she didn't seem to be asking for something to eat.  Now, just exactly how did the woman doing the test know that?  When Janey used the device to say something, why was it assumed she wasn't really saying what she was saying?  I do know the impulse to think "She doesn't really mean that".  For example, at home, Janey has quite a few times gone through several menus to make Touch Chat say "I don't want to wear white.  I want to wear orange"  Because Janey has never, even either shown she knows colors or objected to any certain color being worn, my first impulse was to just think she was playing around.  But I realized that's a pretty big thing to assume.  Maybe Janey never had a WAY to tell me that before.  Maybe she really does hate white clothes.  Maybe she wants more orange in her wardrobe.  No matter what, it seems pretty presumptuous to give someone a way to communicate and then when they do, to assume it means nothing.

To be fair, I really am not sure myself if AAC is going to help Janey with communication, and I don't know if Janey wants to use it or not.  After the initial few days with the Touch Chat (and Proloquo) at home, Janey has been rejecting using them, at one point very pointedly by means of hitting me in the face (I made her stay on her bed and not have TV for a while, but I left the Touch Chat out for her in case she wanted to speak ill of me on it!)  But I think she deserves a chance.

The good part?  Janey's wonderful teacher agrees with me.  Today, I sent her new iPad into school, and the teacher is going to update Touch Chat with things like the names of her classmates and with phrases they working on.  She is going to continue to make it available at school, and we will continue to make it available at home.

I'm trying not to get discouraged.  But at times, I do.  It has seemed over the years this same kind of scenario has played out a lot.  I am told there's some kind of help available.  When I actually decide to try to get that help, it's not actually available in Janey's specific case.  This isn't quite like that.  Nothing stopped us from getting Touch Chat on our own (and I'm glad we did, because if we had wanted to get it paid for by the schools, we would have been out of luck).  We are so, so lucky that Janey has a teacher that believes in her and works closely with us to coordinate our efforts.  But still---it feels often like a theme.  Janey just doesn't quite fit into any program.  She's not "high-functioning", as the music classes we looked into required.  Special Olympics, while friendly and welcoming, was not at all aimed at kids like her.  And now, her particular combination of being able to talk some and not being instantly inclined to communicate through technology---she isn't quite right for AAC either.

More and more, I realize there just isn't a lot out there to help.  And more and more, I appreciate the hands-on school people, the teachers and therapists and aides and all that don't say "she's not quite what we are looking for" but instead just accept her and work with her and love her.  And that is what we will keep doing at home, too.

Janey's 11th first day of school

Janey started 7th grade today.  When I sat down to count, it surprised me a bit that it was first day of school number 11 for her.  She started 3 year old kindergarten just after she turned 3, and she went to 5 year old kindergarten twice...it all adds up to 11 first days of school.

I'll have to say, of all those first days, today might be the one I felt the most anxious about.  That seems counter-intuitive, but it's true.  Mostly, this is because of how summer school went.  Janey seemed truly unhappy for the first extended time at school.  She resisted the bus, she came home seeming upset every day, and eventually, when her teacher told me she was having a very hard time getting through the days, I took her out for the last week or so.  I think I should have done so sooner.  After about a week to decompress, we saw the happy Janey again.  We went on our long trip to take William to Chicago and to see my dear friend Michelle and her family in Ohio, and Janey was amazing.  The only really rough times were when we cruelly tried to get her to use the bathroom at rest stops before eating.  Once we stopped doing that, she was happy almost the whole time.  She slept well in the hotels, traveled, made herself at home at Michelle's house, listened to a ton of music, all that.  We reflected that we didn't think a trip with a more typical 13 year old would have been as tear-free!

I spent a lot of time the last few days thinking about the contrast between the time Janey was in summer school and the trip.  It can sometimes feel, in the midst of Janey being unhappy, that that is just her default state, that what we do makes no difference.  But that's not true.  Of course, we can't go on trips every day, but the things the trip featured---novelty within a familiar framework, tons of music, exercise she enjoyed (playing in hotel pools), much one on one attention---those are proven ingredients for a happy Janey.  And as Janey gets older, it seems like school gives her less and less of what makes her happy.

Of course, the standard response to that would be "school is meant for learning, not entertainment".  And my response back---well, it's been 11 years now.  And Janey hasn't shown she wants or is able to learn what the schools have to teach.  It's not for lack of good teachers or lack of trying.  Most kids in her program DO learn.  They learn to read and write and do math.  They do amazingly well.  I think Janey has spoken.  She's not interested in that kind of learning.  And as she gets older and diverges more from even the standard autism path, it might be getting harder for her to find the level of comfort at school she needs to be relaxed enough to learn at all.

So---what can I do?  I don't think the school I imagine for Janey exists.  I'm not even sure myself what I picture the school being.  Or if what I picture even is a school.  But I can picture what she'd love---a place where she could be outside as much as possible, where she could have access to music at all times, where she would go on excursions to parks, take rides on buses and trains, play in water, rest when she was tired, be read to and look at books, work on basic cooking, be taken to stores and helped to purchase items, be encouraged gently to talk more...that's my dream.

And you might have had the thought I've had.  That sounds like home schooling.  And that has crossed my mind.  But, to a person, everyone who has spent time with Janey has emphatically said to me what I know to be the truth---I couldn't do it.  Not just I don't want to do it---I couldn't, physically or mentally.  Healthwise, I could not make it without the respite that school provides.  Mentally and physically, doing it all alone, I would very quickly be too tired to provide the atmosphere Janey would thrive in.  I know that.  During the weeks this summer we were at home and she was not at school, I was drained beyond what I can explain.  We wound up staying home with Janey watching videos, with a daily walk to get ice cream.  That's all I could do.  That is not what Janey needs.

What happens when No Child Left Behind leaves your child behind?  I know that the schools are required to try to teach Janey, and I know for so many kids, that is a good thing, that there are kids that in the past would not have been offered the chance to learn to read or write that are thriving with that chance.  But in our quest to give each child a chance, can the vision of success be expanded?  Can we give Janey and the other Janeys out there the chance to be the best they can be, even if that best requires a very different kind of school environment?  That is what I am going to be trying to figure out.

Screaming Trumps Theory

For a few weeks, Janey was very happy.  As is usually the case with her, we really weren't sure what was working---her new medication, spring finally arriving, the new behavior plan at school---it's never easy to say.  But she was calm, sleeping well, talking a bit more...and although I try hard to keep an even keel, I was feeling more hopeful about the future than I had in a while.

When things are going smoothly with Janey, I am able to step back and think more about autism and her particular form of it from a theoretical perspective.  I was doing more reading of books on autism, reading more on-line information about various approaching to teaching and learning in autism, and waking up mornings enthused to try new things.  In reading some about the rapid prompting method of teaching kids with autism (RPM), although I haven't yet researched it deeply, I was struck by how the kids are taught facts and information, not just building blocks of learning or emotional things.  One night, when looking out the window with Janey at night, I started telling her about stars, and how they are faraway suns.  I wound up talking to her about astronomy for a long time, while she seemed to be listening eagerly.  I had the feeling, as I have so many times, that I had hit on something important, that I would do things differently from here on in.

And then---Janey has a day when she screams all day, when she cries without ceasing, when she hits us or tries to bit us over and over.  She has a night where she wakes at one in the morning and never goes back to sleep, while she endlessly repeats lines from videos or songs.  She has days where her only words are "Snuggle on the bed!" and when I lie down to do so, she is calm for just a moment and then kicks me, hits me, screams.  She has days where she constantly reaches into her pullups and smears...well, you get the idea.  She has the days that try our souls.

Maybe other people are better at this than me, but when Janey has days like that, the theories go out the window.  It's very, very hard to feel hopeful and ready to try new things when you haven't slept, when you are in pain from repeated hits or kicks, when you are spending your days cleaning up tough messes.  It's hard to wake each morning ready to test some exciting new theory when the day before was what most people unblessed with a child like Janey would consider the toughest day of their lives, but which for us was just another long, long day in a series that stretches back years and into the future for...the rest of our lives.

I think this kind of weariness is why schools are better at staying consistent with behavior plans or teaching methods.  The teachers are extremely devoted to the students, but they know the day ends and they go home, they know the week will be over in time and they will have a weekend, they know summer always comes around.  For parents, that is not the case.  It never ends.  And when a child has been screaming for hours, when you have been hit over and over, when you haven't slept well in nights---well, I guess it takes a stronger person than I am to still calmly follow a particular theory or teaching method.  For me, it takes the energy I have to just try my damnedest to calm Janey down, to keep her clean and fed, to get her to sleep.  And to meet the needs of my other children, to keep dishes and laundry from taking over, to be an approximation of a functioning human being.

If....if Janey didn't have the extreme behaviors...if she were still just as affected by autism and learning issues, but she was more the unreachable kind of autism than the behaviorally challenging kind...well, I think I'd do pretty well.  That is where the image people have of God somehow handing out kids to the ones who can best handle them breaks down severely.  I feel like my strengths as a person and parent are not matched well to being Janey's mother.  I do the best I can, but I simply don't have the energy, physical or mental, to be the type of parent that would be best for her.  So I muddle along.  I get from day to day.  And over and over, screaming trumps theory.

Three Surprises in Ten Minutes

Janey has been tough lately.  She's been wearing us out, trying out patience, discouraging us a good deal.  Last night was no exception.  She was cranky, volatile, angry, and we were tired out of our minds.  And then, within a very short period of time, she surprised us with her unique and her quirky language three times, and left us laughing instead of crying.

The first incident stemmed from her love/hate relationship with "Little Bear".  Little Bear is one of the mildest TV shows you could ever watch, a sweet story of the adventures of a human-like bear, his family and various other animal friends.  We really don't get why Janey is so worked up by it.  She asks to watch it constantly.  When we put it on, she will watch about 5 minutes of it and then blow up, always.  She freaks out spectacularly and gently or not turns off the TV.  Last night followed that pattern.  She asked for it, we said as we always do "But that show makes you very upset!  Do you PROMISE not to hit the TV or scream if we put it on?"  Yes, we are suckers.  We know her promises are not sincere, but we give her another chance, over and over.  We put it on, and the same thing happened that always happens.  She screamed after a few minutes and slammed her hand into the TV to shut it off.  Tony told her to go to bed (it was close to bedtime) and said "I am not proud of you!"

That's when she surprised us.  She said back, in a voice familiar to parents of preteens everywhere "I am not proud of you either!"  We looked at each other astonished, and couldn't help starting to laugh.  It was so unexpected, but at the same time, so typical of a child her age.  I'd never heard her use the world "either" before, and she rarely responds to anything in that kind of sentence.  We were frankly delighted.

However, she was still supposed to stay in her bed.  We lay down with her, trying to get her to sleep. She faked being ready to sleep for a few minutes, and then surprised us the second time.  Using a sing-songy silly voice, she said "I have to go potty.  I want to make a stinky.  I need to make a poopy.  I want to have a....(imagine her going on and on for about 10 different words that are euphemisms for needing to use the bathroom)"  We had no idea she even knew some of those terms.  And we were fairly sure she didn't actually have to use the bathroom in that way, as she already had just a bit earlier, but she knows the one thing that will always allow her to get out of bed.  So I took her in, and of course, it was a ruse, but still...we again were shaking our heads and chuckling.

When she was back in bed, surprise number three came along.  She said, in a slow and careful voice "acetaminophen".  We had given her generic Tylenol over the weekend when she was banging her head and it appeared she had a headache, and she had learned the name somehow from our talking to each other.  We asked her if she wanted acetaminophen, and she said yes.  We were, again, shocked.  It's not an easy word, and not one she's heard a lot.

All three of these happenings illustrate what is so fascinating and at the same time frustrating about Janey.  She doesn't learn in traditional ways.  You can plug away at trying to teach her the most basic things for literally years, and she shows no sign of having learned them.  Or she learns them and then seems to forget them, like with writing her name.  But inside her head, there is so much going on, and when the time is just right, it comes out, giving us a tantalizing glimpse of a Janey we wish we could see more often.

It's all stored up there somewhere!

A week or so ago, Janey woke up saying "You want your Bruno dog?"  Translated, this means she wanted Bruno.  Bruno is her cousin Zeben's dog.  She last saw Bruno about 2 years ago.  When he was here, she paid almost no attention to him.  She wasn't scared of him---he's littler than our cats---but she wasn't interested in him at all.  I never heard her say his name, and I had no idea she ever knew it.  She hasn't talked about him in the past years, and we haven't talked about him more than in passing.  Yet somehow, his name was stored in her mind, and something made her suddenly want him.

I've realized more and more that almost everything Janey hears, sees or experiences is stored in her memory.  We might not known it, there might not be any way to readily get her to let us know she can access those memories, but it's all there.

Thinking of that, I've been thinking how important it is to keep giving Janey new experiences, new things to learn, even when it's hard doing so.  I'm thinking of my trip to Maine.  The sleep issues and the screaming made parts of it tough, but Janey experienced a whole, whole lot in a few days.  She got to spend extended time with her grandparents, she got to climb rocks and see alpacas and go to a fair and sleep in a travel trailer.  All that is in her head, somewhere.  It's not lost.  Some day, when I'm least expecting it, a bit of it will be spoken of by  her, or she'll do something that shows me she learned from all we did.

A few more examples I saw today----Janey saw two of our cats sleeping, and said "Tommy and Ash!"  She's said Tommy before, but none of us had any idea she knew Ash's name.  He's the shy cat, and she has never before referred to him.  Later, she was having a good loud scream.  I was using my most recent strategy, which is making sure she isn't hurting herself or in the position to hurt anyone else, and then just saying "I see you are screaming.  Tell Mama if I can help you" and then just waiting it out.  I don't think Janey likes that strategy much, but it seems to work as well as any.  However, today, she said "Want to go to the screaming bathroom?"  I wrote here---link---about the Screaming Room, another screaming strategy I'd tried in the past with Janey.  It involves going into the bathroom with her and staying there with her until she stops screaming.  I'd given up on in a few months ago, but I'm going to give it another try, if that is what she is asking for.  It was the first time I remember her asking for a specific way to help with her difficult behaviors.

One of the hardest things for me about autism is the lack of feedback from Janey.  It can feel sometimes for days like I am talking to myself, like I am trying so hard to help Janey and nothing is getting through in the slightest.  But that isn't true.  I need to remember that.  Janey is learning all the time, and I love the rare times she lets me know that.

YouTube with ease

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

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

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

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

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

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

Reading to Janey

I didn't have a lot of preconceived dreams about what being a mother would be like before having kids, but I had one very strong one!  I dreamt of reading to my kids.  I had all kinds of fantasies about how we'd pick out a huge pile of library books and read them all, and go back the next day and get more, and how I'd have to negotiate about how many bedtime stories I'd read, all the while being secretly thrilled they wanted more than there was time to read.  Well---like most parenting fantasies, this one never came to pass.  I read a fair amount to the boys, but it was never as big a part of their lives as I'd wished, and neither of them read much for pleasure.  And Janey---reading to Janey---well, it's different than what I pictured.  But I'm starting to realize it still can be a great way for us to connect.

The first thing that has to happen with Janey and reading is that she has to love the book.  It's very hard to figure out what books she is going to love.  Her choices seem pretty random to me---a Wo Wo Wubsey book about tails?  A book about a dog encountering different sounds?  A random clothes catalog?  I can pick out a book I'm sure is going to be something she'd like, and she firmly closes it the minute I open it.  I have to go with what she likes, for whatever reason.  Right now, the book she's picked is a book of nursery rhymes, with very simple versions of the rhymes and with embossed pages.  (here is is, if you are interested)

Once we have the book, there's the reading.  But it's never a straightforward, read from beginning to end, read all the words reading.  Instead, after I read a few words, Janey grabs the book and closes it.  Then, if she really likes the book, she re-opens it, finds the part she likes and hands it back to me, saying something like "Humpty Dumpty!" which means I am to re-read that part.  I do, and often she points to it again.  I read it again.  This can go on for 10 or 15 rounds.  After a while, before I go insane, I quickly sneak in another rhyme.  That usually causes the book to get grabbed and shut.  But then, sometimes, when she reopens it, it's to request the rhyme I snuck in.  It has to be her idea.  And so we go on, sometimes for a long time.  We might only read 4 or 5 of the rhymes total, but we read the heck out of the ones she likes, and she is delighted.  She loves hearing them, and doesn't get bored.

I used to get very frustrated by this type of reading.  I felt like all we were doing was sort of a form of echolalia via my reading---I was doing the echolalia for Janey.  But I've tried to get a new attitude about reading.  The point, with Janey, isn't really to read a book.  It's to interact, and when we do our reading routine, we are interacting.  Janey is communicating what she wants to hear, I am spending time with her doing something we both enjoy, she is very possibly connecting the words I often put my finger under as I read with the sounds---she might be learning to read.  And she is happy.  She is getting joy out of a book, and isn't that the point?  I have had to adjust my thinking about books quite a bit.  Books can be like toys, and in fact Janey is much more likely to interact with a book than with a traditional toy.  Wasn't that my dream, in a way?

My mental list of dreams for Janey is not long.  I hope she is happy in life, and safe, and loved.  But I will admit in that list is a strong hope she will learn to read well enough to read on her own, to enjoy reading.  She can read a little---we have seen that despite what I think is her desire for us to not know she can.  But if I ever see her sit down with a book and read it to herself, well, that will be a top ten lifetime moment for sure.

Our school goals for Janey

Lately, for various reasons, I've been thinking a great deal about what my goals are for Janey's schooling.  In thinking about them, some are much like everyone's goals for their children, and some are quite different.  It's been an interesting thought process working them out.  I thought I'd post them here, and see if anyone has any thoughts or ideas about them.  If you do, I'd love to hear them!

Our goals for Janey

1. We want Janey to be happy, as much as is possible.
2. We want Janey to be safe, physically and emotionally.
3. We want Janey to learn to the extent she is able to learn
4. We want Janey to be around people who love her and understand her.
5. We want Janey to be part of a community of all different people, not just those with autism. We want her to be around typical kids and adults as well as others with disabilities.
6. We want Janey to be exposed to as much music and dance as possible, for we feel those are her strongest areas.
7. We want Janey to have consistency in her life---to be at a school that she will be able to continue at for many years. We want to minimize transitions in her life.
8. We want others to get to know Janey, in order to enrich her life and theirs. We want to give other children a realistic and true view of autism.
9. We want Janey to be able to experience as many of the normal parts of childhood as she can---holiday celebrations, school programs, classroom jokes and drama and community, playground time, all the parts of public school that we look back on as adults fondly.
10. We want Janey to know she is valued for just who she is.

"Good night, Daddy!"

Last night, as I was working on getting Janey to sleep, she jumped up and went out to the kitchen where Tony was.  A very common occurrence, usually because she wants to ask for food of some kind, but not this time.  Tony came over to me a few minutes later and said "Did you tell Janey to come tell me good night?" I said I didn't, and he said "She came out here and came up to me and said 'Good night, Daddy!'"  And that is huge.  She has never, ever, ever done something like that spontaneously before.  She sometimes, once in a while, would say something like that if I specifically asked her to, if I said "Go say good night to Daddy", but on her own?  Never!  To say we were thrilled is an understatement.  It's the kind of thing that Mr. Ken, her ABA specialist, and also everyone at school has been working on for years and years, and last night was the latest example that it's finally catching on.  It's a great example of what I need to work on---faith that in time, whether Janey seems to be showing results or not, she will learn.  It's hard to wait until a child is eight to hear them tell you good night for the first time on their own, but I dare say it's a lot sweeter after that long of a wait!

The Grocery List

Tony told Janey this afternoon he was going to take her to the grocery store.  She was quite happy, as she loves going to the store.  A few minutes later, she brought us the little notepad Tony uses for grocery lists.  We told her that was great---she had made the connection between the list and shopping.  But then she found a pen and grabbed the pad, and looked like she was going to try writing on it.  That was unusual---at home anyway, she has little interest in drawing or scribbling or any pencil to paper activities.  Then she stopped, put down the pad and started to scream.  She'd been having a banner weekend, and had been cheery for days, so we were startled.  She yelled for a bit, and then said "GREEN CANDY!"  Green candies are those striped round mint hard candies---she loves those.  And we figured it out, or we think we did.  She wanted to put "green candy" on the list.  Tony right away wrote it on the list, and drew a little picture next to the words, and showed it to her, and she seemed a bit calmed down.

The whole episode brought up a lot of questions and emotions in me.  First, did we interpret correctly?  Figuring out what Janey is trying to say is often a puzzle.  Did she just say green candy because she was trying to comfort herself when she was upset, maybe because she wasn't on the way to the store yet?  I guess I'm a natural skeptic, but I often default to assuming Janey isn't meaning to convey the more complex meanings that some of her actions could be interpreted as.  But assuming she was wanting to write green candy on the list---well, that's a little heartbreaking.  It would mark the first time we were aware of her being aware of her own disabilities.  She knew that people can write things down---the kids in her class write all the time.  And she knew that Tony wrote things on that paper to remind him to get them at the store.  So she got the notepad and then, boom, it hit her.  She couldn't write.  She had no idea how to put green candy on the list.  And that would be a sad moment for anyone.

Or I could do as I would like to do more often---see this as an opening, see it as a good thing.  She was making a cognitive breakthrough---getting what writing is all about.  That's a much cheerier way to look at it.   But it would be more cheery if I felt she was within any kind of reach of being able to write.  She has very few even prewriting skills.  Once in a while, she can make a J, or try at a circle or line, but that has taken years and years to get to, and it's pretty hit or miss.  I should, if I were being less of a negative person, think about technology---how she could use her iPad to make a list, how we could take a picture of the green candies and use them to start teaching more more iPad communication.  But she has shown huge resistance to any attempts at that.  Her calm, happy state lately has come about partly because of my realization about how much she gets stressed by my attempts to teach her---I'm going to write about that soon.  She is much more willing to learn at school, but even there, it's slow, slow going.

So I'll say honestly my main feeling today at her frustration was sadness, because she was sad, and because it seemed like she realized what she couldn't do.  Tony and I talked about how we had almost hoped that day would never come---the day when she realized she was different than other kids, and couldn't do the things other kids can do.  And it might not ever come fully, but today felt like a little bit of that knowledge had hit her, and it's hard to for me to see that, and I am sure, harder for Janey to feel it.

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.

Being a Skeptic

I wish I wasn't a skeptic.  But I am.  I don't take much at face value.  Once I got a big pile of Skeptic magazines at a thrift store and read through them all.  They depressed the heck out of me, but I couldn't stop reading.  The favorite phrase of skeptics is "extraordinary claims require extraordinary evidence", and I have to admit I do agree with that.  If you are telling me something that is hard to believe, I need very strong evidence to be convinced.  I wish I wasn't like that.  I wish I had more faith.  I wish I could believe more of what I hear without that voice in my head saying "I think there's more to this.  I'm not sure this is true.  I need to learn more about this before I accept it".  But I can't.

Lately, I am reading more and more about people with autism who are non-verbal or have very limited verbal abilities using typing to show that they have far more going on in their heads that anyone would have guessed.  Now, I do believe that Janey, and a lot of kids, have far more in their minds than they can express.  That is part of autism---that what a person with autism knows is not always easy to get at.  And I know that sometimes with Janey, she needs a hand over her hand to get her started in picking the right answer.  I also know it's EXTREMELY hard, when I do this, to keep from nearly unconsciously guiding her to the right answer.  Sometimes I'm almost sure I'm not, but then I realize I am.  Then I step back and make sure what I am doing is just a very light touch to get her started.  I have started closing my eyes when doing this, to keep from being able to guide her.  Or I put up something between me and the screen she is seeing, to make sure I don't guide her.  And when I do this, she gets a lot less answers right.  I don't EVER want to delude myself into thinking Janey can do things she can't.  This is because that does her a HUGE disservice.  I value Janey for who she is, not who I wish she was.  

I know this is a very touchy area.  And I know that some people with autism type independently, and I know some people start out with what is called Facilitated Communication (read about it here) and then move on to typing on their own.  And I think it's possible that some people communicating through FC (as it's nicknamed) are truly typing their own thoughts.  But I am skeptical.  Saying I am skeptical means something hugely different than saying I don't believe people.  It means I want proof.  I think in this particular situation, proof is something hugely important.  It makes a huge difference in Janey's life.  If people with autism that appear to be even lower functioning than Janey are able to go to college and write poetry and so on using FC, then I need to rearrange my thinking about Janey.  But I am not going to do that on faith, and the history of proving FC is true so far is pretty checkered.  

This article is what got me thinking---it has a lot of interesting information.  (see it here)

I don't ever want to say that I don't believe people.  And that is not what I am saying.  I am saying that I am a huge stakeholder in the task of finding out exactly what people with autism are capable of.  I don't just have an academic interest.  I have a heartfelt, extremely personal interest.  I don't wish to tell anyone else what to do, what to believe, what to think.  I would never want to do that.  My work, my life's task, is to let Janey be what she can be, what she can truly be, and to celebrate her for that.

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.

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.

One Man Show

I wish I could remember who is was, but someone at Janey's IEP meeting said that when Janey is not in a responding mood, working with her is like a one man show.  That was such a great line to describe how it can feel when you don't get any responses at all from her!  When Janey gets in that kind of mood, the completely non-responding mood, you can start to feel like a clown or magician or speech-giver working in front of a totally quiet audience.  You have no way of knowing if she's taking in any of what you say.  You can pull out all the stops, do everything she usually likes, and she just looks at you blankly.  That is one of the most frustrating of the states Janey gets into.

It was making me think about the many, many different modes Janey has.  That was a huge theme at her meeting---how inconsistent she is.  A lot of education for special needs is based on not moving on until the child shows competence at a certain level.  With Janey, one day she can blow you away with how well she knows a subject, while the next you'd think she didn't know a thing about it.  It is as extreme as what surprised me most at the meeting---that when Janey is in exactly the right mood, she can write her name "Jane", and in fairly good printing!  I was shocked by that.  On other days, she can't even seem to hold a pencil.

Janey's modes seem to come in groups.  For example, there's the talkative excitable mode.  That is when she seems almost manic---talking a lot but also very, very wild, sleepless, running around, reciting phrases.  Then there's the talkative relaxed mode, which is probably my favorite---when Janey is happy but not wild and talking a lot more than usual.  With the sad moods, there's loud sad, where she screams all day, and soft sad, where she is just not responsive, where she wants to be alone and sleep.  There's cheerful and cooperative, and there's cheerful and "Dennis-the-Menace"  Cheerful and cooperative might not involve much talking, but she will do as you suggest, and will do things like putting on her shoes when we say we say we are going someplace.  Cheerful and Menace is when she pours out bottles of soda or dishwashing liquid, where she runs away from us dangerously but laughing.  There's more moods than that, but you get the picture.

I want to think Janey can always absorb what is going on around, even when she appears to not be.  I've read about a few kids with autism that suddenly in their teens were able to communicate much better than in the past, and they said one of the main things they wanted people to know was that they were understanding what was being said even if they couldn't respond.  So even when Janey is in one-man-show mode, I am trying more lately to explain things to her, to tell her what noises are that she might be hearing, to read books to her, to take care not to say things around her that might upset her.  It can't hurt.

I worry a little about Janey getting bored, if she really can understand much more than she can demonstrate.  What if she can already read, at times, and we are over and over teaching her her letters?  What if she gets everything that is being said to her, and is sick of hearing my voice telling her the same lessons over and over?  But I think it's more likely that when she's in some of her modes, she truly doesn't know the same things she does when she's in a different mode.  Or more---she can't access the knowledge.  That part of her brain library is temporarily locked up.

I think if science could figure out this---why kids with autism can't always access what they know---it would be a huge stride forward in helping them learn.  I hope it's being studied, somewhere.

Ways I'm not smart, ways Janey is

Janey's recent testing has led me to think a good deal about what "smart" means.  You can take smart as something a test can measure.  If you do that, well, I would test smart.  I am good at the skill of taking the tests that have been chosen by a lot of educators to define what they have chosen to define as smart.  However, over the years, I've had many occasions to realize that doing well on those tests means---doing well on those tests.  Not a lot else.  If you look at my life in terms of financial success, or major academic success, or artistic success, or a lot of other measures of success, I would not test very high at all.  The tests don't predict much, except that you will probably do well on future tests of the same kind.  There are a lot of ways I'm not smart at all.

I learned quite a few of these ways during high school.  I'm hopeless at foreign languages.  Everyone around me was learning vocabulary right and left, and I just couldn't.  This is also a problem with me for learning names.  I don't have a good memory at all for verbal words.  Janey is extremely good at this, obviously.  She seems to store every word she's ever heard someplace in her brain, and when she wants to, she can recite them back.  I also could not for the life of me remember the names of various parts of things, like in biology.  I remember studying for a test on the parts of a fetal pig.  My friends seemed to be to be able to glance at the pig and know all the parts.  I truly worked hard at trying to learn them, but failed miserably.  I also learned, well before high school, that I am about the worst athlete on earth.  The horrible memory of a relay race in gym that involved my team not being able to move along until I got a basket still burns.  The WHOLE TIME OF THE CLASS was me trying to get the basket, with about 20 girls around me snickering.  When I see Janey run or climb, I am always stunned by her natural grace.  It goes without saying I can't dance or do aerobics type stuff, while Janey seems able to learn a dance routine she sees after one view.

I also don't have the gift of being able to push myself to work very hard.  My school grades were good, but they could have been much better.  I see how William works at his homework, and I know I never put in a tenth of that effort.  When Janey wants to do something, she doesn't give up.  I'm a giver-upper.

I remember very plainly the moment I realized I was just not musical.  I had been playing the trumpet for 7 years at that point.  I was the worst trumpeter in the band.  Most of the time, I was just faking it, not playing at all.  It struck me like a ton of bricks "I am just not good at this.  No matter what, I'm not musical"  It was actually a relief.  I believe in that kind of realism in life.  Not everyone is good at everything.  Janey doesn't play instruments, but she can instinctively sing in tune.  She appreciates good music, and knows the difference between that and bad music.  She has the musical gift.  I don't.

I am also the messiest person on earth.  I've always been that way, and I probably always will be.  It's an area where no matter how hard I try, and off and on I HAVE tried, I just can't keep things neat.  This was the case with my desk in elementary school, this was the case with my locker in high school and this is the case with my house.  I don't see the mess well.  I don't know how to keep things organized.

There are things I'm good at.   I'm one of the fastest readers you are likely to meet.  People tell me I'm a pretty fair writer.  I'm not bad at trivia.  But overall, the ability to score as a "gifted" child on IQ tests has done very, very little for me in life.  And I need to keep that in mind.  I believe in reality.  I'm not going to dismiss the fact that Janey will most likely not learn to read well, not graduate from high school, not hold a job.  But none of that means she doesn't have areas where she is very, very smart, smarter than I'll ever be.

Motivated to get it wrong

This morning, I worked with Janey on an on-line reading program her school uses and that you can use at home, Lexia.  Janey was happy to use it.  She was familiar with it from school, and was able to use the mouse pretty well and do the activities it asked her to.  At her level, it's mainly picking a letter, hearing how it sounds and what kind of words it is used it, doing a little game like a puzzle or a find-a-letter picture and then listening to two words and picking the one that starts with the letter you are working on.  Janey did well until that last part, and I noticed something odd about how she did on that part.  She got the answer wrong EVERY time.  There were only 2 letters to pick from, and the program was smart and moved them around after you got it wrong once, and pure chance would say she'd sometimes get it right, but she didn't.  And I soon realized why.  If you got it wrong twice, the voice said "Let me help you think about this" and then picked the answer for her.  Janey echoed "Let me help you think about this" in the exact tone of the computer voice, and laughed like crazy.  She had quickly figured out how to get what motivated her, by not getting the answer right.

That made me think how often something like that happens with Janey.  She isn't motivated to get things "right", whatever our notion of right is.  She isn't motivated to make other people happy.  She's motivated by herself---by what makes her happy.  So she'll spend long periods of time doing what look to me to be boring apps on the iPad if they make a sound she likes as a reward.  She'll work to get at foods we don't want her to have right then, if she can get a bite or two before we start all the yelling and showing her what a mess she made.  She doesn't care we are upset---she got what she wanted.

It explains a lot what makes learning hard for Janey.  It might not even be so much that learning is hard---it's that motivating her to learn is hard.  She can do quite complicated things when she wants to.  She's pretty much figured out Netflix instant viewing.  She knows if she wants strawberry milk, she needs to bring me milk, the strawberry powder, a glass and a spoon.  She can somehow "read" the VHS tapes, even ones without pictures, if it results in the right one being put on.  She knows the words to every Christmas song out there, and if you'll sing with her and leave out words, she'll show that.  But things she isn't motivated to do?  No way.  It's why giving her little rewards like M&Ms can bring out knowledge we had no idea on earth she knew, like the time she spelled her last name or said which brother was bigger.

And that's the challenge of autism and learning, right there.  How do you get your child to WANT to learn the things they need to learn?  I usually have no idea.

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.