"Daddy just went asleep"

Early this morning, about 5:30, Janey woke me up by putting a Tupperware container of cheese on top of me.  This means she wants some cheese cut up.  We keep a knife right in the container for convenience.  In my sleepy state, I asked "Where's Daddy?", hoping he could do the job.

We ask Janey questions like that all the time, questions we don't really expect an answer to.  I've tried at times not to, to not to push her to talk when she doesn't want to.  But the questions sneak back, because that's a natural way of having a conversation, and in general, I like to talk to Janey like I would to most people.  It's easier, and it assumes competence, which is important to me.  But that doesn't mean she answers me...usually.

After a pause, I was very very surprised.  Janey said back to me "Daddy just went asleep".

It's hard to really explain how surprising that answer was, but there were many, many unusual things about it.  One is that it was original.  It wasn't echoing something she'd heard.  Almost all her speech that is more than a single word is an echo.  Sometimes it's echolalia that works just right in the situation she's in, but most of the time, it's not.  She'll say lines from a movie, or something that one of us said that caught her fancy.  She'll sing, or obsessively repeat our refusals "I'm not taking you for a car ride right now!  We don't have any salami!  It's time for bed!", things like that.

Janey will also often give yes or no answers (but sometimes mixing up yes and no).  It usually takes a couple tries.  We'll say "Do you want some crackers?" and wait for an answer, and then we'll rephrase it "Do you want some crackers, yes or no?" or perhaps "The food I want is...." giving her a fill in the blank.  And eventually, she'll say yes or not, or repeat "The food I want is crackers"

Almost all Janey's speech that isn't scripting or echolalia is used to express wants.  That's great.  We love knowing what she wants, and we will praise her heavily for saying something like "Want to go for a car ride?" or "Want to watch SpongeBob?", telling her we really appreciate her telling us what she wants.

So---what we almost never heard is speech that is original, speech that doesn't express a want, speech that answers a question, or speech that is a sentence.

When Janey does say something like she did this morning, there is a tone she uses we don't hear any other time.  It's slower, with less expression.  It doesn't flow out like her frequent scripted speech.  It's very deliberate.  And that is how she said "Daddy just went asleep"

Tony had not actually just gone to sleep.  He was in the bathroom.  But often, when Janey wakes up in the middle of the night and wants something, Tony will very justifiably say "I just went to sleep!"  And so, Janey heard my question and understood why I was asking it.  She understood the subtext---why are you waking me up to give you cheese?  Why aren't you asking Daddy?  (Tony usually is awake long before I am.  He's the world's ultimate morning person)

Progress with Janey can be very, very slow.  It can be so slow it appears not to be happening.  We can try to teach her something and see almost no progress for years and years and years.  But she's learning, at the pace she can and wants to.  Today's sentence was a wonderful reminder of that.  For whatever reason, speech of some types is incredibly hard for Janey.  I think the part of her brain that would form answers beyond yes or no, that would form original sentences, just doesn't quite work like other people's brains.  I think that accounts for the very different tone she uses for the rare times we get those sentences.  They require use of some other system in her mind.  It's like if we wanted to solve a math problem using only verbal skills, or wanted to walk without the automatic motor skills.

I don't believe in breakthroughs with Janey.  Having her say a sentence like she did today doesn't mean it's going to start happening all the time.  That's not the point.  In some ways, it's a reminder of why it's so hard for her to talk in that way.  Even in this case, the sentence wasn't quite accurate, and it wasn't quite grammatical.  But it happened, and we need to always remember that Janey had abilities and capacities that doesn't show themselves on a regular basis.

Every day, I am so proud of Janey.

More talking, less sleeping

Last week was winter vacation week here in Boston, the most dreaded vacation of all, at least for our family.  It comes a time of year when there is nothing you can do outside, when the weather is dreary, when Facebook is full of posts from people going away for vacation and if you are not one of those people, and you are dealing with a teenage autistic girl who doesn't care for a change in routine....it's no vacation.

An odd thing we have noticed over the years is that by the end of most any vacation week, when Janey is home with us completely, she talks more. I don't know why this is.  I know she's exposed to more language at school than at home, and she gets a lot of one on one attention there.  But maybe it's having two or more adults around her at all times, trying to keep her happy, or maybe she relaxes away from school like we all do a little, or who knows what.  But this vacation was no exception.

Over the course of a few days toward the end of vacation week, Janey said all kinds of things that surprised and delighted us.  One example---she was looking at my collection of postcards on the fridge.  I pointed to one she was looking at and said "What's on that one?" and she correctly said "a fox".  I then pointed to a cat and a horse, which she also named.  I stopped, as to not quiz her for too long, but she kept going, pointing to another and saying "That is a bear!" (correctly) and then to one with two cats, saying "Those are some cats!"  Perfect grammar, and spontaneous talking!

Later that day, her brother Freddy called.  Usually a perfect way to have Janey be totally silent is to have someone on the other end of the phone that would like to hear her talk.  But this time, she was actually answering Freddy's questions!  She recited her address and phone number, she responded to him singing a song she likes, and then, when I asked her "Do you know where Freddy is?" she said "Freddy is at college!"  Freddy and I were both taken aback.  We've told her that, many many times, but I think that's the first time she's ever said it.  It made me really happy, partly because I always worry that she just thinks her brothers sometimes disappear into no-where.  It was good knowing she knows where he is.

The next day, William called.  Janey wasn't quite as chatty that day, but late in the call, just for fun, I said "Where is William right now? and Janey said, right away, "William is in Chicago!"  We were on Facetime, and I tell you, William's face reflected my own in showing huge shock at that answer.  I KNOW she's never said Chicago before, and I truly didn't think she had any idea where William was.  We were all so happy.

In the middle of those two days of talking, there was, as there always is, a night. I think I'm starting to be able to sense as soon as bedtime comes on nights like that one that something is up.  Janey was just not tired.  We followed our bedtime routine, but she kept jumping up, asking for things, turning on the TV, getting food from the fridge...long past her usual bedtime of 7 or so.  At 10, she was still awake.  At midnight, she was still awake.  At 4 in the morning, she was still awake.  You get the picture.  She slept not a wink all night.

You would think that she'd be tired the next day.  But she wasn't.  She was peppy and lively and wide awake all day.  I figured at least she'd go to sleep early, or at the very least at her regular time.  But no.  She finally went to bed that next night at 9 pm.  She had woken the day before at 6 am.  So she was up for 39 hours straight.

I've written before how Janey once in a while just skips a night's sleep like that.  I think this time was the record time awake, but it's not that uncommon that she's cheery the day after a night without sleep.  It's like her body and mind simply don't need sleep some (thankfully fairly rare) nights.  However, Tony and I do.  We spelled each other, but still, people in their mid-50s don't function with that kind of fractured sleep too well.

I do think there's a connection between the increased talking and the lack of sleep.  Janey's brain is a fascinating thing.  It seems like it sometimes goes into overdrive, into a mode where all the knowledge she has stored is far more accessible than usual.  I can see why you wouldn't want to sleep, if that didn't happen to you that often.  You'd want to stay awake, and maybe your mind would keep you awake.

Sometimes it seems like a huge part of Janey's autism is a brain that shifts between levels of alertness, levels of operating speed and ease, more drastically than most brains.  Any report ever written about Janey mentions that what she can do depends very much on the day.  Some days, she is barely responsive.  Other days, she is so engaged that it's startling.

If Janey ever got to the point where we could both sleep while she's awake...well, that would be great.  I don't think the occasional sleepless nights are going away, and I accept that.  But boy, I don't think even a week later now, Tony and I are much recovered.  Now for some more coffee...

The Pepsi Challenge of unlocking Janey's knowledge

The other day, Janey and I were at her favorite after school place, the "ice cream store", which has been various chains and is now a 7-11.  She wanted soda, and I took a diet Coke out of the cooler.  She usually drinks just a sip or two and then Tony has the rest, and he is diabetic, so we get diet.  I hate diet soda, and I try to avoid corn syrup, so I don't drink regular soda usually (and of course all soda is unhealthy and we shouldn't have it and all that...but anyway...)  As we walked toward the register to pay, Janey yelled out "NO!"  When I asked her what was wrong, she grabbed the soda from my hands and said "No!  PEPSI!"

Janey looking ready to take on the world

Well, that was a huge surprise.  I don't think we've ever used the word Pepsi at home.  Not that we are opposed to Pepsi, but we just call soda "soda".  I had no idea, no idea on earth, that Janey would have the slightest idea there is a difference between Pepsi and Coke, or in fact even that there is a difference between store brand soda and brand name soda.

We went back to the cooler and I got a diet Pepsi out.  Then Janey surprised me again.  She said "NO!" and put back the diet Pepsi and got out a regular Pepsi.  Again, I was stunned. I had no idea she knew there was a difference between diet and regular soda.  So we bought the regular Pepsi, Janey had her usual few sips, and that was that.

I've been thinking a lot about this.  Janey doesn't often tip her hand and let us know what she knows.  Weeks or even months can go by without her saying a single new word, or doing anything really new.  But it's up there, stored in her brain.

When I got Janey's progress reports from school last Friday, there were surprises there too.  In OT, she has been typing the letters of handwritten words into the computer, to get the YouTube video she wants.  I was shocked she was able to do that, to match up written letters with keyboard letters.  The report said at first she typed each letter multiple times, but now she was learning to just hit each one once.  She has also been identifying classmates using TouchChat, an assisted communication program.  I didn't know she knew her classmates apart, to say nothing of being able to pick out certain ones.  At home, she often has trouble giving the right names to her two brothers even.

The problem with knowing that Janey has knowledge she doesn't let on she has is that there isn't always, or even often, a way to get at that hidden knowledge.  It's not very transferable from one context to another.  Like the thousands of songs I know that Janey knows by heart, the knowledge is stored in her brain but comes out only when she wishes it to, when the moment is just right.

Sometimes, though, I think Janey wants to access brain files and she can't, or she can't translate what she wants into speech.  The other day, she came home singing a tune I didn't recognize.  Then she wanted a video, and kept saying names of videos and then getting upset when I actually put them on.  Finally, after a long run of this, by chance she saw the icon for "Yo Gabba Gabba".  I read through the names of all the episodes, and she stopped me at one.  I put it on, she smiled a huge smile and in a minute I heard the tune she'd come home singing.

I was almost in tears thinking how it must all feel.  She knew exactly what she wanted, but the words didn't come.  I didn't remember the tune, and she couldn't think of "Yo Gabba Gabba", or couldn't get her mouth to say the words.  I'm glad we figured it out, but how often does this happen to her?  I know how I feel when something is at the tip of my tongue and I can't quite access what it is.  That's a very, very frustrating feeling.  What if I felt that all the time?

William and Freddy always picked Coke...

I wish I knew how to better help Janey say what she wants to say.  I am sure that much of the time when she acts out and I don't know why, it's from not being able to communicate.  I need to keep in mind the Pepsi incident, and try harder to give Janey a way to have her say, to get her non-diet Pepsi.  It's my personal Pepsi Challenge.

How girls and boys with autism differ....a collection of links

In response to a question on the Facebook companion page to this blog (thanks, Ragon!), I decided to look at various articles about the differences between girls and boys with autism, and give a list of links.  I'm not endorsing the articles here by including them---just trying to provide a variety of takes on the topic!  Three big points seem to keep getting mentioned---of course that less girls than boys are diagnosed with autism, that girls with autism tend to be diagnosed later, and that girls show autism differently, with less repetitive behaviors and more typical special interests.  There's a lot of talk about the brains of autistic girls and boys being different, and some about how the ratio is less skewed in children with intellectual disabilities.

If you have any articles you've found useful I didn't include (there are MANY out there!), let me know about them---I will probably do another post like this at some point.


http://www.autism.org.uk/about/what-is/gender.aspx

A pretty good piece.  It cites a lot of research, and does talk about how when there is an intellectual disability as part of the autism, the ratios get closer to 1 on 1.  But also a lot about how Aspergers type autism is harder to see in girls.

https://med.stanford.edu/news/all-news/2015/09/girls-and-boys-with-autism-differ-in-behavior-brain-structure.html

About the brain differences between girls and boys with autism, and about how boys tend to have more repetitive behaviors than girls.

http://www.icare4autism.org/news/2012/04/differences-in-autism-symptoms-for-boys-and-girls/

A short general review, including notes on how girls are more affected academically than boys, but tend to have less sensory sensitivities and repetitive behaviors.

https://www.verywell.com/differences-between-boys-and-girls-with-autism-260307

A list of differences between boys and girls with autism.  It mentioned as do several other articles that when girls have a special interest, it tends to be more typical than boys special interests--for example, being into music rather than train schedules.

https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

This is a longer and very interesting piece, although it does have a lot of the "girls with autism are harder to notice" type talk.  But it has a lot of fascinating ideas, like that girls with autism have brains that are more like typical boys than like boys with autism, and the idea that it might seem like girls are more severely affected than boys because it takes more clear-cut autistic behaviors for a girl to get diagnosed at all.

http://www.cnn.com/2012/04/04/health/mental-health/autism-sex-differences/

Talks about the differences in ratios in more pronounced autism, and about how sometimes autism in girls can show itself as severe shyness

http://www.health24.com/Medical/Autism/About-autism/girls-and-boys-have-different-autism-profiles-20161027

An interesting note about how girls and boys with autism both often have the same genetic mutations, but girls need twice as many as boys for the autism to be manifested.

https://www.theatlantic.com/health/archive/2015/10/the-invisible-women-with-autism/410806/?utm_source=SFTwitter

A long article that is quite well done, with three girls showcased, each with a different level of functioning and different issues as a result.  Talks about how girls are diagnosed later, as a rule.  A personal note---tells about a US researcher with a $13 million grant to study the differences between boys and girls with autism.  I hope there are some blockbusters findings from that study, as $13 would certainly go a long way in providing respite and recreations activities for the girls affected.

https://iancommunity.org/ssc/girls-autism-hiding-plain-sight

A lot about how girls with autism appear more typical than boys...but with the interesting note that girls tends to show more autistic behaviors at home than at school or elsewhere in public.

http://raisingchildren.net.au/articles/autism_spectrum_disorder_in_girls.html/context/1037

This is a good summing up type article, with a lot of the points other articles raise in bullet form.

Word Retrieval and Blaming The Cat

Yesterday, Janey tripped over a cord when I was vacuuming.  She screamed, and I turned off the vacuum and ran over to her.  She was fine---she didn't fall down, just lost her balance a little.  I started saying the things mothers say when their child is upset "What happened, sweetie?  Are you okay?" Of course I knew what happened, but there's kind of a patter that kicks in at times like that.  What surprised me was what Janey said.  In between tears, she said "Did Merg scare you?"

Merg is one of our cats.  He was nowhere near us at that time, and certainly didn't scare Janey.  I said "Merg scared you?" in surprise, and Janey said "Did Merg scratch you?"  With Janey's usual reversals, she meant of course that Merg scared and scratched her.

This incident made me think about how Janey's issues with word retrieval might be the cause of a lot of her anger and lashing out.  It so often seems like it's very, very hard for her to find the right words and sentences to use.  She knows what she wants to say, but she can't think how to say it.  So instead, she says something that DOES come to mind.  There was a time a few months ago when Merg did scare her, after she pet him a bit too much, and we asked her at that time "Did Merg scratch you?"  He hadn't, but the phrase stuck in her mind.  I'm sure we might have said then "Did Merg scare you?"  When Janey was scared by the tripping, somehow that script came to mind.

So often, Janey asks for things, and then when she gets them, she acts like you have done something very wrong in giving them to her.  I am thinking that many of these times, what she asks for is not what she wants at all.  She'll say "I want bacon!" or "I want Kipper!" when she wants SOME kind of food or SOME show, but not those specific ones.  And we, understandably, try to give her what she asks for, and I can imagine how frustrating that must be for her (and for us).

We have tried using visual aids to help Janey with this, like pictures of various foods or shows.  However, it often seems like the word retrieval is more than just not being able to say what she wants.  It extends to being able to point out what she wants.  She often brings us videos, videos she knows by pictures on them, and then when we put them on, there is again the fury.  Her mind seems to trip her up, like the cord did.  It isn't able to form either a word or a picture for what she really wants, although she knows what she wants in other ways.

It's hard to think of a solution to this problem.  It seems like there are circuits in her brain which just don't allow her to find words or pictures in an straightforward way.  I feel for her so much with this.  I can't imagine what it would be like to want something, to know it's possible to get, but to not be able to find the words to ask for her, or to be able to pick out the right picture, or write the word down, or really communicate in any way what it is that is wanted.

This problem also makes it very easy to unconsciously influence what Janey says.  Sometimes when we are desperately trying to figure out what is wrong, we give suggestions, and Janey grabs at them like a life ring.  For example, if she wakes up screaming, we might say "Do you want bacon?" and she'll echo that---"DO YOU WANT BACON?" So we think we've hit on it, only to make her bacon and see her get even more upset.  Even in the Merg-cat case, something we said months ago popped back up and lead to her accusing Merg of evil-doing he had nothing to do with.

At times, I feel like this problem with being able to communicate is a huge part of what makes Janey challenging.  Other children with autism seem to be able to use communication devices or programs like Proloquo, but I think that is when the problem is more with being able to use verbal speech.  Janey is easily able to form verbal speech---I think the problem is more being able to access in her brain either a word or a picture for what she wants.  And I wish very much I could help her more with this, help her communicate her wants and needs so we could better meet them.

The Return of the Screaming

Recently, we had the longest stretch of Janey being in a good mood ever.  It lasted about six weeks, and it was wonderful.  During that time, she had basically no bad days.  Almost every day was a happy day, a cheerful day.  She cried and yelled and bit herself very, very little.  It was one of the most hopeful times I've had since she was three and regressed.

I knew, reasonably, it wouldn't last forever.  For any of us, good moods don't last forever, and with Janey's history of cyclical mood swings, it's even more true for her.  So even when things were fantastic, I braced myself for them to stop being so.  Maybe I shouldn't do that.  I try hard to live in the moment, but for an overthinker such as myself, that is terribly hard.  I do enjoy the good times, very very much, but I think I find it important not to get unrealistic.  And so this current spell is not hitting me as hard as it otherwise would.

For the screaming is back.  It snuck back this past weekend, and has been in full force this week.  Not all day long---unlike the crying, this kind of screaming would be near impossible to keep up all day, but parts of each day have featured it.  It's the screaming that can't really be described, but I'll try.  It's the scream of someone in horrible pain, someone in such torment that they are not holding anything back.  Janey gets stiff all over, her face gets red and even sort of purple, she shakes, and she looks like her world is ending.  And she screams---so loudly it truly can make your ears ring.  She screams for periods of up to maybe half an hour, with barely a breathe in between.  And then---something makes it stop, and often, she is just fine afterward, cheerful and ready to go on with the day.

We search for reasons, of course.  The first thought is always pain---is she in some kind of awful pain?  She gets constipated, and at first, we thought that might be part of this spell, but she is no longer at all constipated and that didn't seem to help.  She doesn't have a fever, she doesn't show signs of sickness.  When we ask her to point to what hurts, she doesn't.  I wonder if it's a headache, but the fact that she ends the screaming after a bit and is just fine makes that seem unlikely.  So I think it's not really a pain thing, not physical pain, anyway.

Another theory I have is her lack of understanding of toilet training.  Earlier this week, she was holding in her urine.  I had put her back in underwear for school, after going to back to pullups for a while during another urine holding spell, but right away she started holding in urine again---going up to 14 hours without letting it out, and coming home, asking for a pullup and wetting right through it with a day's worth of held in pee.  We have noticed she sometimes seems more upset after peeing---does she think that we are upset with her just in general for needing to pee?  I can't imagine it---I know no-one at school would make her feel that way, and I know we don't, but I wonder if her mind just doesn't quite get the concept of toilet training, and someone sees the point as being not supposed to urinate at all.  Who knows?

Or maybe the screaming is her realizing her limitations.  I often wonder that.  Does she want to tell us things she doesn't know how to say?  Does she somehow understand what she can't do?  Or is she able to do things we don't know she can, and she is sick of us not getting that?

Maybe, the screaming is just an artifact of a brain with differences.  Maybe sometimes, the screaming is just triggered by an errant electrical impulse in her brain.  It's impossible to say.  We look for triggers, but so often, there are none we can see.  And so sometimes the best way to handle the screaming is to just accept it.  That is what I settled on doing last night.  I tried to see it as a part of her---not something I need to fix or figure out, but just what Janey was, right then.  I patted her back, I gave her a bath, I talked to her.  I didn't refer to the screaming.  I tried to assume she had no control over it, and that is would pass when it was ready to pass.  And it did.  She had a fairly good night, after a long screaming spell.  She screamed a little in the night, but not a lot, and is often the case, she is cheerful this morning.  We will see what the day holds.   But I'm thinking sometimes, part of accepting Janey is accepting that there are going to be behaviors we just don't understand, and maybe never will.

Frantic reciting

When I went to get Janey at afterschool yesterday, I could hear her coming down the hall from a long distance.  She was reciting the Pledge of Allegiance, in a loud and what I recognized as a frantic voice.  As soon as she finished it, she started again, sounding horrible, like someone trying very hard not to cry.  She kept saying it all the way to the car, and the first part of the ride home, getting increasingly upset.  It's a mode I've seen in Janey a few times before, but not for a while---her stuck mode.  She used to even call it that---she'd cry out in the middle of these episodes---"I'm stuck!"  I imagine it's like when you get a song stuck in your head, but with Janey's brain setup, it's far worse.  You can't distract her.  Any attempt to do so just results in her getting louder and more frantic.  I finally used the only technique I've found to work---giving her something else to recite.  I chose The Lord's Prayer, which might strike people as a little sacreligious or a little bit of an odd choice for an agnostic, but there have been times in my life when reciting that prayer in my head has calmed me down.  I figured it was an opportunity to teach her something potentially calming, and at least it would give her something else to say.  I've recited it to her a few times before, and she has said parts of it, but this time, she learned it fully in about 5 minutes.  We said it back and forth the rest of the way home, and it did seem to calm her some---not because of the content, I think, but just because it was something new.  She likes the "Amen", and she likes the daily bread part---maybe bread is something she can understand there, and she certainly likes her daily bread.

This all is another example of what Janey can do very easily---learn new things by rote.  It comes completely naturally to her.  Too naturally, maybe, because then the recitations get stuck.  It's also an example of the seat of the pants autism parenting I so often have to do.  I've never found a handbook for how to deal with a child that is stuck reciting the same thing over and over and can't be distracted.  I don't think it's a common enough problem, even maybe in autism, to have a "correct" solution.  It's one of those times I feel utterly alone.  I don't know what to do, I don't know if I'm doing something helpful or not helpful.  I only know what sometimes seems to work.  The whole episode left me drained.  There are a few other things going on lately that are a little scary, and I just fell apart a bit last night.  I had a defeated feeling---a "what the heck does anything really matter" feeling.  I don't have a cheery ending for this post.

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.

Motivation and Drive, the autism way

After I wrote yesterday about my frustration with Janey's learning, I thought very hard about how she does learn.  It struck me that two major things make her learning different that typical kids.  One is motivation.  She has to be internally motivated.  She is not motivated in any way by pleasing others, or just be the thrill of accomplishment.  She is motivated by actually getting to do or see or hear things she enjoys.  She also does not have a drive to move on, to find the next big thing, to seek novelty.  She would never enjoy a role-playing game, as I do on occasion, where the big fun is getting to the next level and seeing what is there.  She lives in the moment when it comes to learning.

The right motivation can drive Janey to do very complicated things, things we'd never guess she'd be able to do.  For example, she loves to pick videos on Netflix.  She isn't quite able yet to get to the Netflix program on her own, but to be fair that's tricky for all of us---it involves changing a setting on the remote, pushing the right button on a row of buttons and making sure the Wii is on, and going to the right place on the Wii with a different remote...it's a wonder it ever gets done.  But once you get her to Netflix, she can do it all.  She finds the right list of videos (Recently watched or favorites) by scrolling up or down, then when she gets to the right list, she scrolls right or left to find the picture of the video she wants.  She clicks on it, then finds where it says "Play from Beginning" and clicks that.  If she gets tired of a video (as she often does), she can exit out and switch to another one.  This is all from a girl who sometimes acts like she barely knows her own name.

However, without motivation, she will not do the most basic things.  She can put on her socks and shoes and coat when she wants to go someplace, but when she doesn't, she'll look at us helplessly like she has absolutely no clue what we could be expecting.  You can't convince or prod or force her to put them on.  She simply sees no reason to do so.  Our disapproval is not a reason.

The other big factor in her learning is the lack of desire to move on.  I realized that when watching her this morning playing with the First in Math program on the computer.  She was very eager to play with it.  She woke up and asked for it very first thing.  We went to the shapes matching game, where you pick shapes from a cloud of floating around shapes to make three in a row that are the same.  She can easily get the right shapes when she feels like it, but I realized she really doesn't care about that.  She likes the floating shapes, the music, the whole bit.  She puts shapes in the wrong place and then just watches the program float around.  I would be driven to see what happens if I get enough right in a row---I'd want to see what came next, what kind of reward there was, how the next level got challenging.  I was so driven I almost jumped in and just played the darn game myself.  But Janey was happy with it the way it was.  It wasn't that she might not have liked the next level too---but that just didn't motivate her.  I don't usually get into the whole "We can learn a lot from our children with autism" bit.  I feel like autism is a disability, not just a difference.  But in this particular case, I might make an exception.  When I let myself relax and just look at the shapes floating around, I could also see her point.  It was relaxing.  It was something in itself to do, not just a step to the next part.

However, kids with autism do need to learn.  I think the key is designing learning programs that understand them.  They have to be highly, highly motivating.  Getting something right has to result in a big reward, like a song the child loves or a video clip or so on.  But the actual tasks, in contrast, might have be kind of boring.  If Janey is happy just watching shapes float, the task might need to be taken down in interest a notch.  She needs to do the task to get to the reward, and therefore actually have some motivation to get the answer right.  Even writing this, I'm fighting that way of thinking.  It goes against my grain.  Learning should be natural, should be enjoyable!  Kids learn best when they are having fun!  All those phrases are hitting me.  But autism changes the rules, for a lot of things.  Learning might be one of them.

The other frustration

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

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

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

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

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

My imaginary trip into Janey's mind

I try all the time to figure out what Janey's mind must be thinking, to get a better idea what it would feel like to be her.  Lately, I've been using analogies of a library or a computer to try to get her unique way of thinking.

The library first----I picture myself walking into the library that is Janey's mind.  The first thing I notice is how many books there are.  There are books with lines from pretty much every video she's seen, every song she's heard, every conversation she's been present for.  There are books all over.  So, I try to look up a subject I want to read more about, and notice that there is next to no cataloging system.  No computer guides, no card catalogs, no librarians at the desk to guide me.  There is maybe a very general guide up on the wall to the rough area the books I might need are, but that's all.  So I wander at random, hoping to find what I need.  Frustrated, I mutter out loud "Where's the books about kings?"  Suddenly, a pile of books appear before me.  They all contain information on kings---there's one about We Three Kings, one about King Friday, one about the King of Joke-a-Lot, one about Burger King.  None of them might have what I'm exactly looking for, but I can recite a lot of lyrics, or suddenly get hungry for onion rings, or request a video out of the blue.  While I'm trying to figure out what to do next, there's a noise I don't expect.  Maybe it's a fire alarm, or a truck outside, or a crackling paper far away, but I hear it, and it distracts me from any more looking.  It's very distressing, not being able to find what I want, and I give up and cry.

Or the computer.  Janey's mind is a computer with a huge hard drive.  It's crammed full of hard info---as much raw information as any 8 year old would have, and more than many.  However, there are several problems.  The processing speed of the computer, the ability to connect and manipulate and interpret the data, is hugely slow.  It's like a 286 motherboard with a 1TB hard drive.  There is also only the most minimal of search engines.  It works like the old ads for Bing search used to, in making fun of Google---you search for "cat", and get all cat information from anywhere "The Cat in the Hat!"  "Cats at my house!"  "The Cat that Looked at the Queen"  "Cattails!"  It's also very hard to add certain kinds of information to the computer.  It has trouble storing pictures, much preferring audio files.  The greatest strength of this computer, though, is its music files.  They play more smoothly than almost anything else. The computer freezes up often when you try to do too much at once, and needs rebooting.  And programs that work one day might not the next, depending on what subroutines are running.  The computer is prone to viruses---if you type in commands in a harsh tone, or let it run too long, or vary the power, it just won't work.

These are guesses.  I don't know if either of these analogies are anything like Janey's mind, but I think they might be.  I use them to try to figure out how best to help Janey.  The crucial thing both mind models need is a better working search engine.  I need to figure out how to let Janey access what she knows.  I need also to minimize noise or viruses or anything that will slow down her systems.  I need to let her make use of the areas that she has in excess---to help her use her auditory memory and musical memory to help find information, and I need to find a way to help her increase her visual skills.  I need to try, slowly and gently, to do some construction and organizing at the library or some upgrading with the computer, to help her still be the same Janey I love, but to build on what she already has.

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.

Thank you for the music

I've written a lot here about Janey's love of music, but it's very hard to capture it in writing.  It's hard to explain it without seeing and knowing Janey.  It's not really just that she loves music, but that she seems to understand it, to appreciate it, on a level far beyond what she normally understands or appreciates.  She can hear a song once, and months later, ask for it and remember it and get excited when it gets back to a part she really loves.

A recent example was Janey asking over and over for "the angel song".  Well, there are lots of angel songs, especially Christmas ones.  She had also called a song recently that mentioned wings in it an angel song, so I tried playing that, but it wasn't it.  I played a bunch of Christmas songs, even though I like to save them for the season, but they weren't it either, and Janey was getting increasingly upset.  It's hard to see her like that---knowing what she wants, but just not having the words to explain it.  We were spending long periods of time by my computer using iTunes, trying to get the right song.  Finally, one night, she blurted out "And the Angels Sing!"  Somehow, she had remembered the title.  I don't know when she had heard that song.  It was on my playlist, but iTunes showed it hadn't been played.  I played it right away, and the look on Janey's face was one of the most wonderful things I've ever seen.  It was what she had needed to hear.  If you don't know the song, you can hear it here.  It's a beautiful Big Band tune.  We listened together, and when it got to the bridge, Janey started clapping and clapping, and looked close to happy tears.

That's another thing about Janey's love of music---it's very discriminating.  She doesn't like music in general, she likes the music she LIKES.  I think her love of songs is based on both the tone of the voices and the melody.  For example, in my playlist, I have a lot of songs by The Gatlin Brothers, both as a country group and here and there on country gospel albums that have lots of performers.  I don't always recognize them when they come up, but Janey does.  If a song is by them, even if she has never heard it before, she'll get very excited and ask to hear it again.  There is something about them she adores.  But others songs she loves sung by just about anyone, like "Over the Rainbow" or "Keep on the Sunny Side"

I think the most amazing moment with Janey and music was the first time she heard the Hallelujah Chorus from Handel's Messiah.  She suddenly started to clap loudly, the first time she had done that in response to music.  I looked in the back seat (we were driving) and she looked close to tears of happiness, clapping and looked amazed.  If you know the story about King George 2 and how he stood up when he first heard that chorus, you can see why what Janey did gave me chills.

I could be deluding myself about Janey's innate understanding of and appreciation of music, but I don't think so.  As they say, she comes by it naturally.  My mother is a church organist, William a very talented guitar player, and Tony's family has a lot of musicians.  Tony and I are avid listeners, and the house almost always has some music playing.  And from the start, Janey would sing when she couldn't or wouldn't talk.  I think whatever ravaged part of her brain, causing her autism, spared the musical part of her brain.  And like the ABBA song Janey would probably not find musically pleasing, I say thank you for the music, the joy it's bringing.

Helping Janey choose

When Janey is given a choice of two options, she almost always picks the second one mentioned.  For example, if you ask her "Do you want McDonalds or Burger King?", she'll say "Burger King", but if you switch the order around, she'll say McDonalds.  I am always looking for ways to help her choose what she really wants.  The method I've found that is easiest to use and seems to work well is the hand choosing method.  It works like this---I'll show Janey my two hands, made into fists, and assign each of them one of the choices.  I'll wave the first hand and say the first choice "McDonalds?" and wave the second hand and say the second choice "Burger King?"  Janey will then point to the hand she wants.  Sometimes she'll say the word too.  And in that situation, she doesn't just pick the second option, for some reason.  It seems like having something physical to touch leads to her making a real choice.

When I was thinking about this, I realized that it's often the case that giving Janey a physical cue works to help her understand.  Sometimes when we get home and it's time to get out of the car, Janey will just sit there.  I'm sure she knows it's time to go in the house, but it seems hard for her to get started.  I can say over and over "time to get out!  Let's go!  Time to go in the house!" and although she understands me, she ignores me.  But if I put out my hand to help her get out, she'll hop right out.  She doesn't need the physical help, she doesn't even hold onto my hand when getting out.  She just needs the physical gesture.  I've noticed I do this a lot without thinking about it.  When I want her to sit, I make a sitting motion.  When I want her attention, I tap her.  When she is not eating, I'll give her the first bite, or put the spoon to her mouth.

I don't really understand why physical prompts or objects help as they do.  I suspect it has something to do with the unique wiring of Janey's brain.  Maybe adding a second pathway to the area that needs to be activated helps.  Maybe showing the two hands emphasizes that there's a choice between two things, in a way words can't.  There is so much I don't get about how Janey thinks.  But if something works, I'll use it, whether I get it or not.