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.

All Are Welcome---except, of course, when they aren't

As I made a depressing round of calls this week to try to find a source of outside of school speech therapy for Janey, as I once again looked at summer camp opportunities and realized that the Extended School Year program at the public schools was really her only option, as I thought about how restless Janey is on the weekends, I did some thought exercises.  How would we feel, in today's society, to think that activities, programs, lessons, camps, enrichment opportunities, all those things that are "open to everyone" are in fact closed to one small group of people?  How would we feel knowing that we exclude with polite speech and "of course you understand" and "we aren't equipped to deal with that sort of needs" and "we staff for children who can be in a 4 child to one adult ratio" and "we generally deal with younger children with more potential to someday return to regular classrooms (an actual quote)" and "we'd be happy to help you if you could hire a one on one aide to accompany your child" and many, many other such ways to say NO---we don't include your child?  If this were done on the basis of sex or religion or race or nationality, we'd be outraged.  But because the child in question, the children in question, are autistic, labeled as "low functioning", not "able to follow directions"---well, that's just life.

And the thing of it is, I usually accept it as just life.  I am not a fighter.  I was not especially chosen to fight this autism fight.  I accept reality.  I say "of course I understand".

And the other thing of it is, I don't want Janey where she isn't wanted.  She is so sensitive to tone of voice, to the mood of a room, that she often bursts into tears at tense moments occurring on such TV shows as "Daniel Tiger's Neighborhood" or "Clifford" or "Yo Gabba Gabba".  These are shows aimed at toddlers and preschoolers.  If Daniel's mother is annoyed at Daniel, or Clifford upsets Emily Elizabeth, or the Gabba folk have a misunderstanding, Janey will scream and cry and pound the TV.  So how would she do at a program or camp or activity that just plain doesn't want her there?  How would THEY deal with her toileting accidents, or arm biting, or such?  Would she be yelled at, or worse?

Although I might not like it, I can understand why Janey might not be able to attend some things.  In an ideal world, she should be able to go to anyplace "open to all".  But she can't.  But I cannot accept that after making all kinds of calls,having two kinds of insurance for her, being willing to pay,  there isn't even a place that will provide her with speech therapy, or a social skills group.  I can't accept that she can't attend the city's rec department summer program FOR KIDS WITH SPECIAL NEEDS.  I still can manage to get upset that she had to leave the inclusion school we loved.  I hate it that the only respite we are referred to, over and over and over, is a program we tried, where we personally witnessed a staff of two, one working on checking in children, supposedly supervising approximately 15 kids with severe special needs---a program held up as "the best"---one that now does officially say they can't deal with kids that need one on one attention.

I'm feeling angry today.  And I will calm down.  I'll go back to understanding that "everyone included" doesn't mean that.  I'll go back to realizing Janey is a special case.  I already do realize, very much, that we are incredibly lucky she is welcomed and loved and embraced by the public school she attends---that I can put her on the bus each morning knowing she is cared for all day, and there is a summer program for her that does the same.  But in this city, this country, this place with the money to wage wars and send people into space and provide young sports players with equipment and travel, the city that gave my sons so many incredible opportunities, there is so little for those among us with the most needs.

The TV Standoff

About a month ago, Janey started turning off the TV any time something was on that she didn't want to see any more.  This would be fine, but she then turns it back on, turns it off, turns it on, all in rapid succession.  This isn't great for the TV, and is also pretty annoying, and it doesn't make her happy either---it sends her into a fury.  So we made a rule.  If the TV gets turned off, we unplug it.  No more TV for a while.  We are very consistent about it, and very firm.  So...you'd think that the problem would be quickly solved.  You'd think wrong.

Janey likes TV and videos a lot, sort of.  It's more like a love/hate relationship.  She likes certain shows VERY much, like Kipper.  However, after watching any show much, there are certain parts she likes and certain parts that scare her, or just bug her.  She used to get to those parts, and then ask us to watch something else, but I guess the turning off of the TV was a more direct way to handle the problem.  So we made our stand.  Basically, all it has done is stopped any TV  watching from happening.  If the TV is on, Janey pretty much immediately turns it off, we unplug it, she screams, and then eventually stops asking for it for a bit, then asks again, and after it's been a while, like two or three hours, we go over the rules again, put something else on, and she turns it right off.

I've always wanted to be the kind of mother with kids that just don't watch TV, but over the years, I've realized that I really don't care that much.  I think kids self-regulate, as long as you don't let it be all there is to do.  William watched a ton of TV when he was younger.  As he got older, homework and guitar took over his life, and he watched very little.  When he did, it was a history show.  Freddy never watched much TV.  He and I get into a few shows together---we were big Breaking Bad fans--and we love watching them, but TV was never his thing.  Janey liked TV more from the start.  I think a lot of kids with autism do, and I think they learn a lot from it, especially videos, which are always the same and which can teach in a way she relates to.  She isn't TV obsessed, but to be honest, there isn't a lot else that she enjoys as an indoor activity. She doesn't like to be read to, she doesn't know how to draw, she has next to no interest in toys.  We listen to and sing a lot of music, and I try very hard to engage her in other things, but TV has always been a big part of her life, and I've come to the point where I don't feel like I have to apologize for that.

And now, if we keep standing our ground on the TV turning off, there isn't any more TV.  Even if we don't, the TV is going to break from constant off and on, and we aren't in a great position right now to get a new one.  What do we do?  This reminds me of the taking clothes off outdoors standoff.  Janey can't take off her clothes outside---we are firm on that.  If she does, we bring her straight inside, which she hates.  She loves being outside.  But for a while this summer, she constantly took off her clothes almost the minute she got outside.  I don't think she really got it.  But we couldn't really compromise.  I think it was more that she got out of the habit finally than she accepted the limit, as she still occasionally does take off her clothes, and we go inside.

These stand-offs are another example of how "normal" parenting techniques just don't work with Janey, much of the time.  She doesn't really seem to get consequences. She has no desire to please us.  She isn't very good at thinking out how her actions will play out.  And so, although she very much wants her Kipper or Sing-A-Longs or Yo Gabba Gabba or whatever, she can't seem to figure out what she needs to do to still be able to watch them, just as she doesn't seem to get why taking off her clothes leads to an end of outside time.  Common sense would say that if we stand firm long enough, it will work, but common sense is not always right.  Even I am starting to miss Kipper the Dog.

What Does Janey Actually Say?

It's very, very hard to explain Janey's talking to anyone who hasn't heard her, and even people who have heard her, but only occasionally or in certain settings, don't really get a complete view of how she talks.  I tried today to write down everything she said.  I missed a lot, but I captured a bit.  Her speech is divided into I'd say 4 categories.  One is actually talking, to ask for something or give or get information (mostly the asking).  One is direct echolalia, something repeated right after she hears it, usually exactly, but sometimes a little altered.  One is delayed echolalia, a phrase or saying from a video or something she's heard someone say a lot.  And the fourth isn't really talking, but spontaneous singing.  The fourth could be considered part of the delayed echolalia, but it seems different to me.  Here's some examples---

First, the actual talking

I want you to get me soda
I want tuna
I want mayonnaise
Oatmeal.
I want pizza.


That's it, for a whole day.  I'm sure there must have been a little more, but not much.  You can see it's all food requests.  There weren't reversed pronouns today, and it was mostly full sentences, but not exactly a huge amount of conversation.

Next, the direct echolalia

Do you remember that now?
Oh, Janey, chimpanzee!
Go Patriots!  (the Patriots play a big game today!)
But you don't open the oven.  That's too naughty.


Mostly just repeated, but the oven one had the "that's too naughty" added on by her.

Now, the big one---delayed echolalia

A storybook?  And you call that a present?  (from Beauty and the Beast Enchanted Christmas)
Well, I'm not going anywhere.  I'm exhausted.  It's best that I say here, in case they come back (Kipper)
Who is eating my cake?  It's Arnold!  (Kipper again)
Don't hit!  Don't hit her!  That's very naughty! (I'm not sure when I said that, but I am pretty sure I did)
Do I look weird?  Not weird at all.  But you look kind of different, in a cool way (Yo Gabba Gabba)
Do you happen to know whose bowl you're eating?  MINE!  (from a sing-a-long video, spoken part)

So mostly videos, with the no hitting thrown in.  That could be a video too, I'm thinking, but I don't recognize it.

Then the singing

"Stand by Me"
"Waltzing Matilda"
"There's a Hole in the Bucket"
"You're a Grand Old Flag"
"Eensy Weensy Spider"

The singing is usually the whole first verse of a song, sometimes more, right in tune and nice and loud.

So....some days Janey talks a lot, but she never says a lot that's actually communication.  Once in a while, the delayed echolalia could be cut and paste type talking, saying something she wants to say.  That might have been the case with the "I'm exhausted" today, or the hitting being naughty, but usually, it seems more like random playbacks of phrases stored in her head.

There's a lot that Janey's speech almost never has.  She almost never answers questions, at least without a ton of prompting, and then they are only fact type questions like "What's your name?" or "What shape is that?"  She almost never just talks about things, like commenting on the cats, or snow, or what she is doing.  She never has conversational volleys, where we talk back and forth.  If you took away the singing and different types of echolalia, her talking would basically be her asking for food, videos and once in a while, things like a bath or crayons.

I've read lots of times that it's promising when autistic kids have echolalia, that it's a good sign that they will speech more in the future.  But Janey is eight, and I don't think she's improving.  If I read back on old blog entries here, I think it could be argued she's talking real language less overall.  It's frustrating.  I wish there were more literature out there about echolalia.  Why do some kids with autism have it and some not?  Does it have a meaning?  How should I respond to it?  I'd love a book about echolalia, or at least a lengthy article!  More than anything, I'd like a book specifically about Janey.  I've said that before.  The handbook to her, her speaking and rest of her, doesn't exist.  Or else I'm writing it, and I don't feel up to it, some days.

Better today, but what happened?

Janey is better today, thank goodness.  I don't know if we could have taken another day, although of course we would have, because we have no choice.  But it was a tough, tough, tough, tough couple of days.  Today there is some crying, but no-where near constant, and some long happy times in between.  Tony is actually able to watch the Patriots in relative peace while Janey watches a YouTube episode of Mickey Mouse Clubhouse.  I hope tomorrow is okay at school.  If she had still been like she was yesterday, I would have kept her home, although I'm sure people at school would have said I should send her, but I can't.  It would be like sending a very sick child to school, although the acute illness was mental, not physical.  But today she is mostly just Janey, never easy but her regular self.

So what happened?  Who knows?  The theories people have told me through comments are great.  I love getting ideas like that.  I think the biggest contenders are 1---a cognitive jump that resulted in some brain jumblings and anxiety  2---a low level illness of some kind that she couldn't explain to us, and that didn't have enough obvious outside symptoms for us to see  3---too much chocolate at some point, or other food with caffeine.  Maybe she snuck coffee at home or school  4---something small setting her off to start with, and then the crying feeding on itself, and just not being able to get stopped by her.

And what made it better?  Again, who knows?  Today Tony took her out a few times, which we did yesterday too, but also it was warm enough today so she could run around some in the driveway.  She need that time outside, more than most anyone I know.  He took her to the grocery store and let her pick out what she wanted to eat, which was pistachio nuts.  It seemed like after she ate a bunch of those, things turned around.  I looked them up and saw they have lots of B6, copper and manganese, whatever that is, so maybe she needed those nutrients and somehow knew what to pick.  Maybe her mind finished processing whatever was bothering it.  A bit ago, she said "I'm still happy when I'm crying"  We think that's a quote from Yo Gabba Gabba somehow, but she uses quotes to say what she wants, sometimes, and maybe she was trying to tell us she needed the crying for some reason.  Again, probably not, but you just don't know with her.

Janey grabbed my camera again today, and when I went to check my pictures, I found a few surprise self-portraits!  The first picture is one of those, and the second is one I took of her just now, watching her show and pulling at her eye---two of her favorite activities.

The Grinch shirt is my little piece of Bad Autism Mother dressing.  She was being grinch-like, so I put on her grinch shirt.  Hey, I'm not saint.  Let's hope tomorrow she can wear a cheery, sparkly, happy shirt.  Please!

"I'm just here for the Yo Gabba Gabba!"

One of the interesting parts of having a blog is being able to see stats on it.  I try not to get hung up on them.  I don't really write this blog to get stats, or to count up how many followers I have, or so on.  Mostly, I write it because I have to---because when I am overwhelmed with the life of a mother of a child with autism, I have to write.  I've always reacted to life's tougher moments that way, which is why high school required about 10 diaries worth of writing for me, none of which I hope anyone ever reads, unless you are very interested in hearing about what boys talked to me in study hall or on the bus, with detailed analysis of what they were wearing and what they REALLY were saying between the lines and what a nasty person the new girl they are going out with is...you get the picture.  I write because I am compelled to write.

Lately, however, in looking at the stats for this blog, I see a huge amount of new people looking at it, and almost all of them are here because of a post I wrote about Yo Gabba Gabba, in which I included some pictures.  I guess some search engine directs people looking for Yo Gabba Gabba information to here.  I wonder if they are kind of disappointed by the extreme lack of solid info on DJ Lance Rock and the crew once they get here.  If you are one of those readers, I wanted to just say "hi" to you, and to say---stick around and read a little about autism, if you wish.

You might be saying now "No, sister, I have no interest in autism.  My kid is fine.  Maybe a little seriously into the whole gang of monsters on Yo Gabba, but no autistic!"  And I say---I know.  I have some non-autistic kids myself.  But chances are, whether you have a child with autism or not, if the current statistics don't lie, you are going to be encountering some kids with autism along the way.  They maybe be included in your child's class, or they might be in a special class at their school.  You might see them at the playground, or at the beach, or on a bus.  You might have one as a niece or nephew, or the child of a friend.  But unless you live in a world very unlike mine, you will intersect at some point with autism.  And you might want to learn more about it.  It's a pretty interesting world, if I might say so.  It's also a tough world.  Maybe that glazed-eyed woman in your office is dealing with an autistic child.  Maybe that kid at the grocery store throwing a tantrum is a poster child for the autistic spectrum.  Maybe the boy in the class your daughter is telling you about, the one that only wants to talk about bridges or Thomas the Tank Engine or flags of the nations, maybe they are autistic.  They are out there everyplace!

So, if you happened on this blog but you don't have a child with autism, welcome!  Before I had a child with autism, I read a lot about it, just because it was interesting to me.  The reality of autism is not quite as interesting as reading about it was, but I understand if you are just curious, if you just want to glimpse another way of thinking.  And if you learn a little about what the autistic world is like, all the better!

The crying white monster on Yo Gabba Gabba

                                                      A NOTE!
For some reason, I've figured out that these pictures come up very high in the Google Images search for pictures of Yo Gabba Gabba.  I hope if you've found them that way, you don't mind that this isn't really a Yo Gabba Gabba blog!  It's a blog about my daughter with autism.  If you'd like to learn more about life with a child with autism, this post----  link --- is a bit of a sum-up I posted recently. Thanks!

Janey's latest passion is Yo Gabba Gabba. For the uninitiated, Yo Gabba Gabba is one seriously weird TV show. It's the kind of TV show I could picture being watched on college campuses after, well, illegal mind altering. It is about a guy, DJ Lance Rock, and his gang of toys that come to life, assorted odd little guys. There's lots of music by alternative type bands, lots of far out animation and weird cut scenes. It's the kind of show you watch the first time and think "what the heck?" But after time, it grows on you.

My favorite part of the show is the very, very simple social lessons it teaches. I think someone involved in the show must have a child with autism, or understand autistic kids, because the lessons are taught in the way we have to teach Janey. No long fables, no coming to your own conclusions, no vagueness. They are saying like "Don't Bite Your Friends", "Don't Hit Your Friends", "Don't Say Mean Things to Our Friends", etc. They are sung over and over, and illustrated with very simple little scenes---one of the monsters gets over-excited and bites his friend, one of the guys hits the other and so on.

And there's an extremely weird character that's on a few shows that truly impresses me, in an off-beat way. It's a crying monster, Gooble. The monster is tall and white and obviously very sad. The other characters do ask why he cries all the time, but DJ Lance Rock pretty much tells them---we don't know, but we will still be nice to him. He's our friend.

It struck me seeing this how very, very rare it is on kids shows to see an emotionally different child. Kids shows are chock full of lessons about not treating people who LOOK different than us differently. Any kid watching TV much at all will learn that lesson a thousand times over. We learn also about kids in wheelchairs, kids that can't see or can't hear, and kids that talk different languages. But when, ever, do we learn that some kids ACT differently? And act differently FULL TIME, not just shows about kids having a bad day and crying and then it gets figured out and fixed? I don't think much, ever.

Janey cries a lot. There are days she cries most all day. She is a lot like Gooble that way. We usually don't know why she is crying. Kids have asked me that, and I don't have an answer, except just that Janey is that way, sometimes. Other days, Janey laughs all day with no reason, or sings the same song over and over, or looks blankly into space, or plays with her hands. This isn't an easy, 20 minute show, problem. It's not that someone took away her toy and she is sad about it, or that she is not feeling good. The emotional displays are part of her. So it amazed me, thrilled me, that a show actually seemed to get that kids need to learn that. It's a great, great lesson. We are all different, not just physically or in terms of abilities, but in terms of how we act. I'd love to see more kids TV that addresses that. If the rise of autism is true, I would bet it's a huge growth market for TV.

Meanwhile, we'll be enjoying the inspired weirdness of Gooble and the rest of the gang.