Hearing myself on a bad day

Yesterday was a Bad Day.  Not the worst day ever, but not a very good day.  I read the news too much, and worried too much, about health care and education and Mary Tyler Moore dying and all else.  I am not political, but it's hard to keep from hearing political decisions and worries and anger unless you are in a remote location with no internet, TV or radio---coincidentally, the location I've been daydreaming about somehow going to.  So long before Janey got home from school, I was not in the best of moods.

Frog and Dog from Word World, feeling like I did yesterday

Janey got off the bus yelling.  It took me a few minutes to figure out what she was yelling.  It was a line from "Word World", one of her favorite shows, over and over---"Who's going to read my book on the radio?"  She was screaming it with the intensity you would usually save for warning people of a fire or flood.  I'm sure it was not easy on the bus driver, aide and other kids on the bus.  She screamed her way in, and I guessed that possibly she wanted to see that episode, and put it on.  She watched it, with not that much screaming, but then it was over and another one came on.  Janey didn't want to see the next one.  Not at all.

Tony says that Janey's screaming often hurts his ears.  I thought this was more of a figure of speech.  Maybe I'm half deaf already, but I hadn't had my ears literally hurt by a scream---until yesterday.  Janey's scream over the wrong show coming on felt like someone was poking an ice pick into my head through my ears.  It was truly ear-piercing.

I tried, and in my mind did a good job with, starting my calming patter with Janey as she screamed.  I said things like I knew she was upset, I wanted her to feel better, the wrong show was over...things like that.  However, I also must have said "I don't like it when you scream"  I know I must have said that, because that is the phrase she started repeating.  At the top of her lungs.  For a long, long fifteen minutes or so.  I hope I didn't really sound like her echoing of me.  If I did, I sounded like, well, someone seriously unhinged.

Finally, she calmed a bit and asked for a snuggle.  I put blankets over us, as she likes, and lay next to her and we sang together a bit.  Things seemed better.  Then---the bed was soaked.

As I pulled the sheets and blankets and everything else off the bed, I must have said "I'm so tired of this"  I didn't mean to.  I meant to...I don't know what I meant to say.  I meant to say whatever it is you are supposed to say to a twelve year old autistic girl who is sometimes toilet trained and sometimes not, and who refused at least three times that afternoon to try to use the toilet.  I don't know exactly what that right thing to say is.  I don't know if anyone does.  But she heard me.  She heard me and started repeating, again in scream mode "I'M SO TIRED OF THIS!"  For half an hour.

When Tony got home, I was pretty much reduced to a quivering, ranting mess.  Often upon his entrance after work, I say "Thanks for coming home".  I mean it.  I know there are men, and women, who would, after the years of coming home to a spouse who is acting like I was acting, would say "to heck with it" and just stop coming home.  Tony is not that man.  I am very lucky.  He took over with Janey and I sat for hours watching dumb shows on TV and trying to empty my mind.

Janey slept well last night, and woke up in what seemed to be a good mood.  I hope school is okay.  Reports are she's been having a tough time there lately too.  Yesterday her teacher said she was singing loudly in the morning, and I could picture it quite well.  I honestly don't know how the other kids in the room can work at all when Janey gets loud.

I don't know how to conclude this.  I wish I could say I'll try not to say things that aren't positive to Janey, that her repeating of them shows she hears negative messages from me.  But honestly, I don't know if I can be that perfect.  I don't know if anyone could, anyone on earth.  Most of the time, I can truly say I do the best I can, and I'll keep doing that, but some days, it's a lot harder than others, and I am sure that goes for Janey too.  Thanks for listening, my friends.

A Little Beyond Happy

Janey's wonderful weekend last weekend has been followed by what often follows some of her very best times---a bit of what I can for the lack of a better term "mania".  I know it's not classic mania, probably, and I know that is a loaded term and that it has a clinical meaning and that using it says something specific....but that is a shorthand term I've come to use in my mind for how Janey has been this week.

It's been milder than in the past, as her unhappy periods tend to now be also.  In the past, she often would sleep extremely little during these periods, going to bed very late and waking very early.  We haven't seen that---she seems to be in a teenager style sleep mode a little young, and it's hard to wake her up for school although she goes to bed quite early.  But it's there, and it can be quite something to deal with.

So what does she do when she's "manic" (and I will just call it manic without quotations from here on in!)?  She repeats phrases, over and over and over, far beyond the typical delayed echolalia.  Last night, it was "Okay, all right, I've learned my lesson already!".  Over and over, in the exact same tone, probably 500 times.  I think it might be a phrase from a movie she's watching on Netflix a lot, "Home", or it might be from an episode of a new Scooby Do series on there also, just based on tone of voice.  She eats, huge amounts.  After school yesterday she ate a whole container of feta cheese, a full jar of salsa, a good amount of frozen yogurt and some cookies, and then ate a ton of dinner---homemade chicken nuggets, and still was asking for food at bedtime.  And she laughs---a laugh that is sort of like a laugh track, unvarying and not terribly related to anything going on.  The laugh can turn into almost a shriek, especially out in public.  Sometimes it sounds close to a scream, and it takes looking at her for a minute to figure out it isn't.

One of the toughest things she does when manic is be a little free with her teeth.  It's not biting, but it's pushing her teeth into me, in a way that's hard to explain.  It can hurt, and it's scarily close to a bite.  Last night she also started hugging me in a way that turned into elbowing me.  I don't think she realizes she is doing these things, and telling her to stop and backing away doesn't seem to change much.  She goes right back to doing it as soon as she can, laughing at whatever I say in trying to stop her.  

Usually these manic periods don't last long.  I'm glad they don't, although with their lessened intensity, they are easier to take than they used to be.  But they still make me kind of sad for Janey.  It's like even feeling happy and good turns into something else for her.  It feels like playing a happy song and having it get stuck, repeating the same happy laughter-filled phrase until it loses all meaning and is like a trap.  And the mania seems to often be followed by a plunge into screaming and sadness, from one kind of intensity to another.  I am crossing my fingers and hoping very much that this time, that cycle is broken and she can go back to the amazing relaxed happiness of last week.  Please.

What Janey said about screaming

It's been a long week here, and it's only Wednesday.  Tuesday Janey had a scoliosis checkup at Mass General hospital, and today I had the special big event that comes with turning 50, a colonoscopy.  Monday I'd had a ultrasound to try to figure out why the Framingham Heart Study, which I am a part of, saw potential scarring in my liver as one of the routine research tests they do.  To top off the week, I have a mammogram this Saturday.  So not my favorite kind of week, and not Janey's, either.

The colonoscopy was fine, harder to prepare for than to have, and it didn't show any problems.  I don't know all about the liver tests yet, but what they saw was consistent with autoimmune liver disease, which I had some blood test positive for also.  I'm not letting myself get too worried, because I don't know enough yet to worry and I can't do much about it until I know more.  But this adds another potential autoimmune issue to a family pedigree full of them, and adds another bit to my feeling that Janey's autism is in some way autoimmune-driven.

The good news is Janey is almost done being screened for scoliosis.  They got a very good x-ray of her, which she stood still for in a booth-like place where she had to hold her hands up high.  She would not do that at all six months ago when we last went, so we were very proud of her, and it showed her curvature at a level low enough not to need a brace or surgery.  However, evidently the X-ray took up all her patience.  She was very ready to go after that, but we had to wait and see the doctor.  Janey let us know that she wasn't happy by means of her signature scream, loud and hysterical and I am sure heard by everyone in the hospital section.

When things calmed down and I was dressing Janey, and it was evident we were actually leaving, she said to me "I don't think there is any need for quite that much screaming!"  Well, that's a direct quote, but not one I had said that day at all.  I can't remember when I said it, but I think it was quite a while ago, when I had reached the end of my rope at some point.  It was one of Janey's longest utterances in a while.

What Janey said reminded me once again that nothing I say to her is unheard.  She listens very well.  She might not show any sign of it, or give any response to it, but she hears it and remembers it.  I need to always keep that in mind when I speak to her.

Last night, reflecting on all of it, as I was snuggling her to sleep, I said "Janey, I know you have a reason when you scream.  I might not know the reason, if you don't tell me, but there is one, I know.  You might hurt, or be scared, or be frustrated because you can't find the words to tell me what's wrong, but I know you are communicating when you scream.  I want us to find a way to tell each other what is wrong"  Janey didn't answer, but she gave me one of those looks that speaks volumes, a surprised and pleased intense look, a look that tells me as much as words could.

And so we go on.  We take it day by day.  When we have a tough day, we look to the next day.  When we have a good day, we don't take it for granted.  And by "we" I don't of course just mean our own family, but the larger "we", all of us with children that can't fully communicate, all of us with children that need us so very much.  It makes every fear, every concern, every health scare, so much more intense.  The stakes always feel high.  But we aren't able to have the luxury of thinking too far ahead.  We are needed too much in the present day.  And that's not a bad thing, to be needed that much.  Janey, sometimes maybe there IS a need for that much screaming, even if I say there isn't, but we will try to keep the screaming at a minimum and the hope at a maximum.

The Sun Did Not Shine

Yesterday was a snow day here, a start of spring unwelcome snow day.  Janey and I were home together all day.  I spent the day working on keeping her happy and occupied.  It went fairly well, overall, but by the end of the day, waiting for Daddy to get home, Janey started some screaming.  Then she said "The sun did not shine.  It was too wet to play.  So we sat in the house all that cold, cold wet day"  As most of you probably know, those are the starting lines of "The Cat in the Hat", one of Janey's favorite books.  It took me a minute to realize how appropriate the quote was, and just what Janey was saying.  It certainly was a sit in the house all day type of day.

Talking through quotes is just one of the ways Janey communicates in what could be called non-standard ways.  It's fascinating, but it's also very frustrating.  As she gets older, and some things get easier, the communication doesn't seem to be getting smoother, and more and more, I think it's a piece we have to work on.  I can figure out much of what Janey is trying to tell me, but I am not always going to be with her.  I wish so much we could find a way to help Janey talk to the rest of the world, and talk more easily to us.  I think so much of her frustration and anger could be helped by being able to tell people more easily what she is thinking.

On a day about a week ago, a day that featured much screaming, out of desperation I found an iPad app called GoTalk Now.  It was free and easy to set up, and looked like something Janey would be able to figure out.  It let me create 3 pages (in the free version) of touch screens with words or pictures or phrases, with up to 25 per page, that Janey could touch to hear out loud.  I hoped she might use this especially for emotions.  I made a page with my own face showing nine emotions, and my voice saying the words.  Janey understood easily that she needed to touch one of the faces to get the emotion spoken, but like almost all attempts of this kind, she wasn't interested in using it to communicate.  She did, though, take to one of the buttons, me making a silly face and saying "Silly!"  She hit it over and over, and each time since then I've tried to get her to use the app, which I expanded with a page of phrases she might need and a page of names, she quickly and easily goes to the feelings back and hits the silly button.  No matter how often I try to use the other pages or the other feelings, she is interested only in hearing "silly" over and over.

Janey watching TV

The way Janey communicates which TV show she wants is illustrative of the joys and frustrations of talking with her.  If she wants a show, she brings us the remote.  We ask her what she wants, and she says the name of the show.  We put on the TV and go to the Amazon Fire TV menu, which lets us access Netflix, Hulu and Amazon Prime shows.  If she has asked for a certain show, we go to that show, and I ask her what episode she wants.  She knows the names of a few episodes of a few shows, but usually, I wind up scrolling through all the episodes and saying their names out loud.  Janey points at the TV until we get to the episode she wants, and then she points to herself.  I confirm the episode name, she repeats it, and we put it on.  If I go past the episode in the scrolling, she points to the left, to show me to go back.  It all works most of the time, but it took literally years to get to this point, and still, now and then, we don't get what she is asking for.  She'll sometimes quote a line of dialogue from the show she wants, and if we don't recognize it, she's very upset.  Or she'll say something that is in the little picture illustrating the episode.  Our favorite example of this is an episode of Kipper, which shows Arnold, Kipper's little pig friend, with his head poking out of a box.  That is called "head in a box" and the first time we figured out that one, we laughed for a good long time.

As we get through our days, figuring out if we can what Janey is asking for, guessing at her sometimes cryptic way of getting her meaning across, I worry.  I worry because Tony and I will not live forever, and I want Janey to be able to talk to a wider world.  I want her to have a way to tell whoever she needs to tell what it is she wants and needs and thinks and feels.  There is so much she has to say---I am sure of it.  There must be a way, some way, somehow, to help her communicate in a way that is more universally understood than the way she does now.

Does autism acceptance include respecting NOT communicating?

I like to think I'm pretty good at accepting Janey for who she is, at celebrating what she brings to the world, at not wishing she was who she isn't.  However, I've never quite accepted one part of her---her limited communication.

Janey's speech is a mystery to me, and to many who know her and work with her.  It's hard to describe how it is.  I use the term "minimally verbal", which I am not sure is an official term.  Janey says a few things readily.  She asks for food and TV shows by name.  She asks to "snuggle on the bed" and for a shower.  She says "want disc" when she wants to hear music, in any form.  That's about it, for communication type talking.  However, she CAN say almost anything, in echolalia form.  She can recite movie or TV lines with precision and expression, for hours on end sometimes.  She can also sing what I believe is any song she's ever heard, in tune and with all the lyrics, although never on demand, just when she wants to.  So it's not a matter of a problem with forming words.

Of course, speech isn't the only way to communicate, but Janey doesn't communicate much in other ways either.  She has shown violent opposition to iPad type speech programs or PECS type picture exchange talking, at least at home.  She has no interest in sign language.  She doesn't like to point out things, or gesture.  She can't hold a pencil well enough to write, and shows no interest in doing so.  She isn't able to type.  Overall, her communication of any kind is quite limited.

And I don't accept that well.  I want her to communicate with me.  I want it very much.

This picture captures the look I'm talking about pretty well.

A scene that has been repeated hundreds of times...Janey and I are doing her favorite thing, snuggling on the bed, the bed she calls Mama's Bed although it's been her bed for years.  She is very happy.  I am singing to her, or making my fingers pretend to be people jumping up and down, or reading her a nursery rhyme book, or often, just smiling at her.  And then I go and spoil it.  I pressure her to talk.  I say something like "How was school?"  Or I start a sentence for her "Today at school I...."  Or when I'm reading a nursery rhyme, I stop in the middle "Humpty Dumpty sat on a wall, Humpty Dumpty had a great....", waiting for her to say "fall.  And hundreds of times, the same thing happens.  Janey's face falls.  She gets a tense, distant look.  She looks scared, anxious.  We have gone from connecting to not connecting, strangely enough, because I am trying to connect in the way I want to connect.

What if I accepted Janey is communicating just as much as she wants to?  That would be a radical thing for me to accept.  But it might also be a realistic thing to do.  Janey's speech has never really improved from the time of her big regression, at age 3.  It's sometimes wobbled---gotten better for a while, and then worse for a while, but it's never stayed consistently better.  And this is despite speech therapy three times a week for eight years now, despite being in a family that surrounds her with talking constantly (none of us are very good at ever shutting up), despite so many attempts to give her alternative ways to communicate.  No matter what I've done, she communicates just about the same amount as she ever has.  So what if I just decided to stop pushing her to do more communicating?

When I think about it, Janey HAS communicated her feelings about the subject of communication itself pretty plainly.  That look she gives me, and the fits she has thrown when we insisted she "use her words", the anger reactions to apps like Proloquo---that's communication, communication I have chosen not to accept, not to hear, because I don't like the answer.  What if I respected what she's told me?  What if I gave her credit for communicating just as much as she wants to?  She CAN talk.  She CAN use an iPad.  If she wants to communicate more, well, she's shown me over and over that if she wants to do a thing badly enough, she does it.  So maybe it's time to listen to her, and stop pushing her.  Maybe eight years of her firmly telling me in her own way that she's communicating as much as she wants to should be enough for me to finally get the message.  Maybe sometimes acceptance means accepting that what our child wants isn't what we want them to want---maybe.

Puzzling Out Janey's Limited Speech

Of all the mysteries Janey presents, the most frustrating one to me is her speech.  Why is it that she doesn't talk more, and that her talking basically never advances?  Or, perhaps the more correct question---why is it that she talks at all, while other girls with autism I've heard of that seem more advanced in most ways than her DON'T talk?  Either way, why is it so hard for her to communicate?

Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it.  Here are the reasons I ruled out, and why...

Inability to produce words verbally

That one is easy to rule out, because Janey can say anything verbally.  I know this because she DOES talk constantly, using delayed echolalia.  Janey can recite the full script of movies and TV shows she's seen years ago.  She can say several Three Stooges skits line for line.  She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing.  She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.

Lack of vocabulary

It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words.  But that doesn't seem to be the case.  The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words.  She knows amazing amounts of words---mostly nouns, but some verbs and adjectives.  She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more.  We have watched her do this in amazement several times.  She KNOWS the words.

Lack of understanding of spoken language

This would be more of a contender until recently.  But Janey has shown more and more how good her receptive language is.  The best way she shows this is by following complicated instructions.  She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own).  I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa.  I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus.  She knows what we are saying.

Lack of desire to communicate

I don't think this is it.  Janey asks us for things all day long, and often she is frustrated that we don't get what she means.  For example, her most used phrase for about a year now is "Snuggle on the bed"  However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others.  She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.

So----Why?  Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did?  Why, despite years of speech therapy three times a week, has she made no progress that lasts?  I don't know.

Many people have suggested augmented communication for Janey, like a speech program on the iPad.  I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested.  She isn't, not one tiny bit.  In fact, she now gets angry when she sees me showing them to her or even using them around her.  She immediately grabs the iPad and switches to something else.  Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it.  Janey is HUGELY sensitive to noise and sounds.  She is an auditory learner, unlike many kids with autism who are visual learners.  I think this makes AC doubly tough for her.  She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music.  So it seems like we are stuck with trying to get her to talk to conventional way.

I wish very much I could figure out how to help Janey with talking.  However, I am starting to feel it's not going to happen.  I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either.  Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so.  I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand.  I'd stop striving for more if she were happier.  But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking.  And so I will keep trying to figure it out.

Incredibly Little Sleep

How little sleep can people survive on?  Janey seems to have taken on that question with a vengeance lately.  She is sleeping less and less and less.  Since my chocolate vow, she's had no chocolate, and she seems less manic and much happier, but whatever was affecting her sleep is still affecting it.  The last three nights, she has slept about three hours a night.  She goes to sleep around 10 and wakes around 1.  Then she's awake the rest of the night.

We have taken all the steps we can think of to deal with this, of course.  We unplug all media at night now, so she can't watch TV or YouTube.  We lock the doors, which for now keeps her from going out of the house.  She is on medication that for most people, would cause better sleep.  We have tried melatonin.  We've done what we can think of, but still, she just isn't sleeping.

And of course, neither are we.  I think I sleep some in minute-long bursts, because I can't help myself, but in general, I'm awake.  Tony is home this week on vacation, and so I'm napping during the days and letting him get some sleep he needs.  Janey is going to summer school, and she is happy with that---hopping on the bus cheerfully and coming home in a good mood.  Unless they are letting her sleep all day at school and not telling us (which I doubt is the case), she's up all day, and for the last few days anyway, perfectly happy.

Deprived of TV during the night, Janey uses her resourcefulness and recites videos.  She walks around in a loop, through the kitchen, living room and bedroom, reliving Kipper episodes, mostly.  She says the same lines for ten or fifteen minutes, and then switches.  She goes to sleep in her bed, but during the night, comes to our bed and wants us to go to her bed.  We try not to do that, but when you haven't slept for hours, anything that might possibly help her sleep can start to seem pretty appealing, and so we do a bed swap, until the next time she decides to switch again.

From what I've read about manic episodes, I do think that might be what these sleepless periods are.  Janey seems to have endless energy during them, and her mind seems to be in overdrive.  She talks non-stop in delayed echolalia.  I think in the middle of these monologues is when I catch a moment of sleep, and then when she pauses for air, I wake up to check what she is doing.

Somehow, even this incredibly little amount of sleep isn't as tough as the days when Janey cries all day, but it starts to catch up with me quickly after a few days.  I am glad I don't have to drive any place, with Tony home.  I am not getting anything done during the day.  Words are coming more slowly to me even writing this than usual.  I'm living in a bit of a haze.

I don't think this will last forever.  We've seen this a few times before, and when Janey comes out of it, she sleeps a very lot for a few days---naps half the day and sleeps long nights.  We just have to get through it.  She's timed it well, anyway, to be during Tony's vacation.  I hope it's over by next week.  My biggest fear is that I am wrong, and it WILL last forever.  I am not at all sure how I could handle that.  I'm too sleepy to full think it out, which is probably a good thing for my sanity.

Mockingbird Monologues

We have a mockingbird living in our yard, and now and then, we are treated to his song.  If you've ever heard a mockingbird sing, you know how cool it is.  He sings for a long, long time, with little bits and pieces of all kinds of other bird songs and noises, and sometimes things like car alarms and squirrel and cat cries.  It's quite something to hear.

Last night, Janey barely slept, and she was in one of the the moods where she talked and sang non-stop.  All the talking was delayed echolalia from assorted videos, and the songs were like an iPod set on random---every genre, mood and rhythm of song coming up one after another.  Although I was collapsing from tiredness, for some reason I was struck by how very cool, like the mockingbird's song, Janey's monologues like that are.

Imagine a child who very rarely says much except the simplest phrases----"Snuggle on Mama's bed!  Ice cream, please, ice cream!  No, Mama!  Don't brush your hair!"  And then imagine that same girl using words far beyond any in her regular vocabulary to recite dialogue "Well, I don't call you a narrator!  I call you a big old secret teller, and I'm kicking you out of this story!"  or "What's the difference between a lie and a fib?  Well, a fib is just not quite telling the truth.  A lie, well, that's just a lie!  Why do you ask?"  "What's a top 10 countdown?  It's when you pick your ten favorite songs and count them down, starting at 10 and going to 10!"  Those quotes from Mickey's Magical Christmas, Angelina Ballerina and Elmo's Top 10 Countdown were ones Janey said in rapid succession last night, all with perfect diction and expression.

Then imagine a child who often screams for hours, who is not toilet trained, who is in many ways severely intellectually delayed, and imagine her singing these lyrics, perfectly in tune...

Oh, it's a jolly holiday with you, Bert
Gentlemen like you are few
Though you're just a diamond 
in the rough, Bert
Underneath your blood is blue!
You'd never think of pressing 
your advantage
Forbearance is the hallmark of your creed
A lady needn't fear when you are near
Your sweet gentility is crystal clear!

Forbearance?  Gentility?  How does it all work?  How is it possible that Janey can sing like that, and sing with expression and style, not at all robotically?  And then switch to "Pumped Up Kicks", then to "Rhinestone Cowboy", then to "Angels We Have Heard on High", to name just a few, all sung, to my ears anyway, perfectly?

Is Janey like the mockingbird?  Is there some little genetic piece of code we share with them, that is usually hidden, but in Janey, is expressed?  Does the mockingbird understand what it is singing and saying?  Does Janey?  I don't know.  Does it matter?  It does, I think.  Echolalia takes up so much of Janey's time that I want to understand it better.  Is it meaningful to her?  Why is it something she does so much of?  Should I discourage it, or embrace it?  Is it just an odd little quirk, a strange autism trick, or is it how Janey wants to talk?  I read the recent article that made the rounds about connecting through Disney, and I can understand that, but Janey's echolalia is different, her particular form of autism more isolating.  She doesn't enjoy sharing her echolalia.  She doesn't like to be joined in her singing or her reciting, not at all.

On some days, I just relax and enjoy the monologue.  On rare occasions, I just let myself be awed by Janey's mind, however different than the mainstream it might be.  Once in a while, I just love hearing her surprise me with her version of the mockingbird's song.

Heard in the Screaming Room

Overall, the past week has been a pretty good one for Janey.  She has been generally quite happy, with the school routine re-established.  But still, at times, there is the screaming.  When she is tired, or overwhelmed, or perhaps just when a scary thought goes through her head, she screams.  I've described her screams before, but words can't really capture them.  They are as loud as I think it would be physically possible for a 9 year old girl to scream.  They are deafening.  She doesn't hold back one single ounce of energy with them---her whole body goes into the scream.  They are incredible, and not in a positive way.

A few nights ago, Janey was cheerfully watching shows on Netflix when suddenly, she screamed.  I responded with the only strategy that has shown any promise against the screams.  I said "You're screaming.  We need to go to the Screaming Room"  The screaming room is the bathroom.  We go in there and I lock the door, which is a latch type lock up high.  I took Janey's hand and we went in.  She screamed a few more times in there, and then looked at me intently.  And then surprised me.  Huge amounts of Janey's speech are delayed echolalia.  She recites big portions of movies, TV shows, books, songs---we are quite used to hearing the reciting.  But this time, she was unmistakably echoing me.  I heard my voice, my intonations.  She said "You are screaming a very lot.  You are screaming because you are worried about where Daddy went".  I recognized the phrases.  They were from a previous time in the Screaming Room, about a week before, during one of Janey's horrible Christmas vacation spells.  I had been trying to put voice to her thoughts, guessing that she was upset because Tony was back at work.

After that echoed speech, I realized that just before the current scream, Tony had said "I'm going to try to sneak upstairs for a minute".  His brother lives upstairs, and Tony was going to go up and check on how he was doing.  I think Janey heard that, and the idea of Daddy being somewhere else was upsetting her, even if Daddy was going to be right back.  We came out of the screaming room and I told Tony what I'd figured out, and he told Janey she could come with him upstairs.  Crisis temporarily averted.

Cut to the middle of that night.  The reason previously that Tony was going to sneak upstairs without Janey is because when Janey visits her uncle, she always finds his stash of M&Ms, and eats some.  If Janey has chocolate after noontime, she doesn't sleep.  And of course, she had eaten some when up at her uncles, and of coruse, at 2 am, she woke up screaming.  I tell you, it's very hard in the middle of the night, when you are tired out of your mind after a long day and just want to stay asleep to carry out calmly the strategies you've worked out in the daytime.  But I tried.  When the screaming started, I said as calmly as I could "You're screaming.  Let's go to the screaming room".  And we did.

Once there, Janey screamed for a while, and then, again, stopped and looked at me.  She said "Friends should know each other's hopes and dreams!"  That is a direct quote from Janey's favorite movie of all time, The Care Bears Movie.  In my exhausted state, that phrase really hit me.  I hugged her and said "I really wish I did know your hopes and dreams.  I would do anything to know them.  I wish you could tell them to me"  Janey was taken aback by this show of emotion.  A few more screams, and then I guess even her energy was used up.  We went back to bed for the remaining few hours of the night.

And this is how we communicate with Janey---through cryptic short bursts of echoing talk, through guesses and interpretation.  It strikes me that maybe my degree in English wasn't a total waste.  I use the skills I've learned of teasing out meaning from text with Janey all the time.  She is the ultimate hard to read work---she doesn't give up her meaning without much close reading.  Janey---I'll keep trying.  Someday I'll maybe I'll get my doctorate in Janey.

The Huffington Post article

Last week, I was interviewed for an article about autism in girls by a reporter from The Huffington Post.  Here's the article--- link.  Being interviewed was an interesting experience!  It was much more nerve-wracking than I had ever pictured it being, not because of the reporter, who was very nice, but because I think I do better writing things down than talking about them live.  I can think about what I write here, but when talking, that internal edit has to be done much more quickly, and I kept worrying I'd say something wrong.  We talked about a lot of things, but the quotes in the article of course were mainly about the thrust of the topic of the article---how autism in girls is rarer and sometimes less easy to see.  I told the reporter before the interview I wasn't sure I was the ideal person to talk to, because Janey's autism isn't subtle.  Strangers on the street can diagnose her.  But the article is actually making me think more about why Janey wasn't diagnosed until she was past 3.  I don't think she was autistic before that.  I think she regressed.  But I know, from what I allow myself to think about before she regressed, that there were subtle little differences in her.  She talked much more to me than to others, and even close friends have told me they questioned how well I said she could talk.  She had a few odd behaviors, and once in a long while, I'd have a moment of wondering---is all okay here?  And there was her very, very late walking.  She didn't walk until she was past 2.  Was that just slow physical development, or something more?  It's very possible that her being a girl gave me just that extra bit of blindness to what was coming.

One thing I did want to clarify from the article is it saying Janey is non-verbal.  I didn't say that to the reporter, but I can understand why she might have thought it (if she didn't read my blog much).  Janey is certainly low-functioning, and a lot of autistic people who are low-functioning are also non-verbal.  But Janey does talk.  She is not really very FUNCTIONALLY verbal, though.  Her talking is of a limited kind.  She requests things, which is great.  Most of her talk is in this formula "I want bacon.  Bacon, please.  Bacon"  You can put anything else in the place of bacon, but she say it in that same way every time.  The rest of her talk is mostly delayed echolalia.  She recites parts of videos, TV shows and sometimes things people have said live to her.  Sometimes, she does this in a way I call in my head "cut and paste" talking.  She picks from her store of lines something that has relevance to what is going on.  For example, if she's made a mess and we are cleaning it up, she says a line from Kipper "I can't play with you right now.  I'm cleaning up YOUR mess!"  Or if she's in a hurry to get something to eat, and we are taking too long, she says "Wait for the milk!  Wait for the milk!", another Kipper line.  Janey also sings a great deal.  Her singing has never been affected by her autism, in that when she regressed in other ways, it didn't seem to affect the musical part of her brain.  She can sing probably thousands of songs, in perfect tune and with all the lyrics.  It's never done on command.  She's like a iPod set on random, with a song she might have heard years ago suddenly popping up.  The exception is Christmas carols, which if I start one, or even just say the name, she'll usually jump in and sing.  Her love for Christmas music is a huge part of her life.

If you are reading this blog for the first time after finding it from the HP article, welcome!!  I am thrilled and amazed, always, to have people from all over the world reading what I started out as just kind of an on-line diary of life with Janey post-diagnosis.  It's turned into something more---a way for me, and I hope for others, to feel less alone, to know there are others out there with autistic girls, all of us doing the best we can.  I hope if you are new to this sometimes lonely journey, you will find a place here to help just a little.  I'm thinking of all of you, and, on this pre-Thanksgiving day, thankful to all who journey along with me.

Deciphering Janey's Day

One of the most frustrating parts of having a child who is not really usefully verbal is never hearing about what she does when she isn't with me, firsthand anyway.  I adore hearing about my kids' days, but with Janey, the time we aren't together is usually a mystery to me.  I hold onto any tidbit I can get from teachers or paras or therapists, but the parts that are usually the best to hear about are the little incidental things, and it's also always telling what gets chosen to tell me by the boys.  You can guess a lot from what names you hear a lot and what classes are never described.  Janey, though, remains completely silent about her school days almost all the time.

This summer, though, she is saying a bit more on our rides home from summertime school.  It's not telling me about the day, but it's echolalia that I am pretty sure comes from school.  However, out of context, it creates puzzles that are near impossible to to solve, although it's fun to try.  Today, she kept yelling out "Roll the dice!  Okay, TWENTY FIVE CENTS!"  and at one point, "Have you got any chips?"  I'm assuming it was some kind of math game, and not that they were teaching the kids some low-level gambling.  I've also heard a name over and over---Elliott.  I was trying to figure out if he was a character on TV or a video, or a real live person.  That got solved today when I saw a little boy as I went to get Janey, sitting with her class, with an "Elliott" name tag.  That was pretty exciting to me---it was one of the first times I've heard from Janey about a child in her class that was a name I didn't already know.  I've heard quite a few quotes with his name is it..."Elliott!  Don't do that!  That's not funny!" (followed by Janey laughing her head off, as I guess to her it certainly WAS funny) and "Elliott!  Come back over here right now!"  I couldn't resist, as we were walking out, saying to Janey in that tone that comes from who knows where "Is Elliott your BOYFRIEND?"  If I were writing a book of parenting advice, I would certainly say not to tease kids that way, but hey, I'm human.  Janey is the 3rd child out of three I've found myself teasing about the opposite sex.

One of the most wonderful things teachers can do is to tell parents of special needs kids about what their kids do during the day.  I've been pretty lucky that way.  One thing I'm very conscious of at school is not asking for special treatment.  I know in the mornings and afternoons, teachers are getting lots of kids in and out of classrooms, and I try hard not to take up their time then asking questions.  But I hope other parents, and teachers, do understand that what they tell me or what I tell them is often the ONLY way communication goes back and forth, unless it's something written down.  Just a few times, I've gone to school different years and found every other kid wearing some special thing for some special day, or I've found out after the fact that a party date had been changed and Janey hadn't brought what she should have brought for it, or that an afterschool activity had been cancelled.  This happens very rarely, but even the few times felt tough for me.  Probably not for Janey, but when you have a child with special needs, you especially want them to be wearing silly clothes if that is what the day features, or to have a treat to give out if everyone else does, or so on.  Sometimes, a child's special needs creates special needs for the parents, specifically, a special need for communication.  Janey's teachers have used email more over the last few years, and I love that.  It can be read when there is time on both sides, it's there to refer to again if you need to---it's great!

One of my biggest dreams for Janey---that one day she'll actually, directly, tell me something about her day.  She'll say "We had music today" or "I played with my friend at recess".  I would love that so much.  Until then, I'll live for the little scraps she is starting to throw my way!

Responding to delayed echolalia

Most of what Janey says is delayed echolalia. She talks mainly in quotes, from videos, songs, from stories or poems she's heard, and less frequency, from actual speech of parents, siblings, teachers, etc.  It's always been very tough for me to figure out how to respond to her delayed echolalia.  I've read all I can on this, and asked a lot of people with knowledge of autism, and have gotten a variety of answers.  Some sources say to ignore the DE, which just feels wrong to me.  Others say to respond to what it seems like Janey is TRYING to say, for example, if she quotes part of a video about eating, to offer her food or ask if she is hungry.  I've also read I should point out that she is quoting, and try hard to get her to say something original.  None of those idea feel totally right to me, and of course, it's probably a case where NOTHING is totally right to do. 

Lately, I've been trying something new.  If I can identify the source of the delayed echolalia at all, and I can remember what comes next, I respond back with that.  For example, Janey quoted a part of an Angelina Ballerina video to me today about telling a lie, from when Angelina tells people her mother is having a baby when she isn't.  I remembered the quote, and said back "I have to admit, when you tell a lie, it's a whopper.  And a little embarrassing", which is what Angelina's parents say to her after her lie is figured out.  The look on Janey's face was enough to make me think I was on the right track.  Janey looked thrilled, like I was really getting her.  I had let her know I knew what she was thinking about, and I added to it.  Janey then said the next line, which I hadn't remembered, and looked at me eagerly, but I didn't have any more memorized.

I think what happened here is that I gave Janey an idea what a conversation feels like.  She said something, I responded with something that related to what she said and added to it.  She looked so happy, like I had figured out what she'd been looking for.  At this point, Janey's speech is not at a point where real conversations can happen often.  But that doesn't probably mean she wouldn't like the good feeling of having a conversation, and maybe somehow the delayed echolalia is partly an attempt to have one.  This also might be why she loves nursery rhymes or predictable fairy tales so much.  They let her start her version of back and forth conversations.

Of course, I wouldn't be me if I didn't have a lot of doubts about whether this kind of response is a good idea.  Am I just encouraging rote reciting?  Am I losing out on an opportunity to work on REAL speech?  What I've told myself back is that it's been many years now, and Janey doesn't seem to be making a lot of progress toward real speech.  At this point, I think the most crucial thing is to let her connect via talking, to keep her interesting in someday talking more usefully.  If I'm always answering her in a way that doesn't let her feel satisfied and happy, I don't think I'm encouraging her to talk.  As often, Janey is showing me what she needs, I think.  When I respond to her quoted speech with the next part of the quote, she gets a look in her eyes I don't often see, a happy, connected look.  She looks right at me, and looks eager to go on with the back and forth quoting.  I think I'm going to go with this approach for a while, and I might spend more time with Mother Goose type reading, to give her more lines to say back and forth that I am familiar with.  As almost always, I'm making it up as I go along.  It's the best I can do with the unique kid I've been given.

Janey Awareness, Autism Awareness

Today is International Autism Awareness Day.  I've said in the past I think I'm about as aware of autism as a person can be, but that's not really true.  I am aware of the way autism affects one little girl, and one family.  Autism is a huge spectrum.  There's the saying that has gotten to be a little cliched, but it's true---if you know one kid with autism, you know one kid with autism.  I had been thinking of writing in general about autism and what I'd like the public to be aware of, but I realized I'm not the expert in that.  I'm the expert on only one child with autism.  So here it is, my "Janey Awareness List"

1.  Janey is eight years old.  She's my third child, my first girl, the girl my husband Tony and I longed for.  She was born on her brother Freddy's seventh birthday.  Although she had some quirkiness from birth, she appeared to be basically normally developing until a bit before her third birthday, when she regressed severely.  She was diagnosed at age 3 years, 3 months with autism.

2.  Janey has low functioning autism.  She, like many children with autism, is intellectually disabled.  Although her skills are a little scattered, in general, she functions like a child of about 2.  She speaks, but around 98% of what she says is either simple requests ("I want Kipper, I want green candy, I want snuggle on Mama's bed") or echolalia, delayed or direct (repeated phrases from videos, books, past conversations, etc)  She says very little that is original or communicative beyond requesting.  She knows some letters and some numbers, inconsistently, some shapes, she can sometimes write a J and is working on the rest of her name, she can name single objects she knows when she's in the mood.  Learning this much academically has taken her 6 years of school (preschool through second grade, where she is now)

3.  Our lives are hugely, extremely impacted by Janey.  She literally cannot ever be unsupervised, not for even seconds.  She has the impulsive nature and lack of safety concerns of your typical 2 years old, in a fairly tall 8 year old's body, and she's pretty good with physical things like climbing and opening.  Someone must always be assigned to watching Janey, ALWAYS.  That means even if you have to leave the room for a very short time, like to run to the bathroom or check the mail.  Otherwise, Janey will put herself in dangerous situations or do things like pour liquids on the floor, or worse.

4.  Because of Janey's lack of ability to communicate and her swings in emotion, she can become very, very upset for long periods of time.  We have had stretches of days on end where Janey cried without stopping, all day, crying really being a mild word for what she did---more like screaming hysterically.  There are other days she laughs for hours on end, and wakes manically in the night still laughing.

5.  Janey attends an inclusion school, the William W. Henderson Inclusion School.  She is in a classroom with kids that are typically developing and with a few other kids with various special needs.  There are 2 teachers and an aide in the classroom, and Janey is also supported by a lot of specialists like physical therapists, occupational therapists, speech therapists, music therapists, an ABA specialist---it takes a full staff to education a Janey!  We love Janey's school, and are very lucky she is there.

6.  We don't know what caused Janey's autism, although I have plenty of theories.  I don't really believe in autism cures.  I don't have a fixed autism policy, belief or style.  I believe in doing a hodgepodge of whatever works.  Janey is on no special diets, takes no special vitamins.  I am not saying that those diets or supplements might not work for other kids, but we haven't chosen to go that route.

7.  Janey loves music.  She knows hundreds of songs by heart, and if the spirit moves her, she can sing them in tunes with the full lyrics, but not on command!  Listening to music with Janey is my favorite way to bond with her.  We listen to a huge variety of songs on the iPod in the car, and when Janey likes one, she asks to re-hear it, and I add it to her list, which she knows how to access when I put the iPod on a base at home.  She especially likes country gospel music (although our family is not very religious!), bluegrass, Weird Al, and most of all, Christmas music.  She sometimes is intensely bothered by certain songs, and it could be those are sung out of tune---I'm not really musical enough to know!

8.  One of the hardest parts of autism for me is the stares in public.  If I could make the general, autism-unaware public aware of one thing, it would be how hard the stares are.  If you see a child acting unusually, maybe making odd sounds or jumping up and down or crying when there doesn't seem to be a reason, or just acting much younger than they are, please try hard not to stare!  I never mind people making eye contact with me and smiling, just to let me know they see us and are supportive, but please don't just look at us like we are a sideshow!

9.  If you are interested in helping autistic kids and their families, my personal wish would be that you volunteer or give money or whatever to organizations providing direct support, direct services.  That means people that are working directly with autistic kids---giving the parents a break, giving the children opportunities for recreation, providing afterschool programs, camps, parties, things like that.  Just because an organization has "autism" in its name, that doesn't mean they work directly to help kids with autism who are living here and now.  They might support one very specific type of autism therapy they believe in, or they might give money for research.  I'm not knocking those things, but there are many families out there desperate for help RIGHT NOW.  They already have the kids with autism, and knowing what caused it or working for some long term "cure" is not going to get them through the day.  I speak from experience.  I am very lucky that Janey can attend afterschool and summer school.  I'm not sure how I'd survive otherwise, frankly.  Even with that, vacations and weekends can be brutal.  I'd do anything in the world for Janey, but there are times that her needs overwhelm our family.  I worry about families with single parents, or more than one autistic child, or less school time.  I worry about them very much.

10.  Janey is an amazing person.  I love her very, very much.  That being said, life with autism is tough.  It's tough for her, it's tough for our family.  Those are the two big points I'd like to emphasize in the end, I guess----that children with autism are people, beloved family members, children that are as precious to their families as any child, but that doesn't change the fact that raising an autistic child is extremely, overwhelmingly, unbelievably tough.  Or, to get back to my Janey-centered approach, I love Janey more than I could have ever imagined, and she is tougher than I ever imagined a child could be.

I'll end with a shout out to every family out there raising their own autistic child.  Here's to all of you.  I'm raising a toast in your honor.  Cheers, and my love.

Janey's Five Step Video Viewing Progression

Lately I've realized that Janey's viewing of movies and other videos follows a very strict sequence.  It's helping me understand some of her previously mysterious fits when watching videos.

Stage One---I put on something new for Janey, on Netflix or on VHS (we don't do DVDs for her much, as she very much likes to handle them, scratch them and lose them.  And VHSs are a dollar at our favorite thrift store, in terrific shape)  This might be a show or movie I'm pretty sure she'll love, something about a topic she likes or with characters she likes.  For an example, recently it was Toy Story.  She likes that type of computer animation, and the music seemed like something that would appeal to her.  However, no matter how perfect the match is, the first viewing is a disaster.  Janey will watch a bit, seemingly interested, and then get very upset and ask for something different.  I used to try to leave on the new video a bit longer, but now, I just take it out.

Stage Two---Two or three days go by.  I don't mention the video.  Then, out of the blue, Janey finds it.  She shows her ability to read in that one specific situation by always knowing her videos apart, even if there are no pictures.  I am not sure how she does it, but she does, even new ones.  It might be font, or letters, or who knows what, but she does.  She brings the video to me, or if it's Netflix, often finds it on her own and puts it on.  I don't mention her previous reaction, and neither does she.  She watches it eagerly and seems to love it.

Stage Three---the video goes into heavy rotation.  We watch, for example, Toy Story day and night.  Janey memorizes it, and says bits of dialogue at random times.  If there are songs, she learns them by heart.  The video is on her mind all the time.

Stage Four---Janey is still enjoying the video, but is starting to get upset while viewing it a bit more.  Sometimes, she starts crying during it, and we use our set phrase "If a video is making you sad, we turn it off".  She will accept that at first, but then obsessively ask for the video, watch it a bit, and then cry again.

Stage Five----The video completely freaks Janey out.  She is terrified of any even slightly scary parts.  This is true of videos you would not even picture having any scary parts, like Kipper or Sesame Street.  She still asks to watch it now and then, but then gets hysterical waiting for the scary parts to come on.  The video is added to the pile of unwatched shows.

I think it takes quite a few viewing for Janey to understand to some extent the plot of shows she watches.  Her initial enjoyment is just based on learning the dialogue and songs, and watching the images.  As she watches the show over and over, she starts to get it more, and characters like Ursula the Sea Witch in The Little Mermaid or Sid the Bad Kid Next Door in Toy Story come alive for her, and they are pretty scary.

I've learned a few things from figuring this all out.  One is that with much repetition, exact repetition of the kind that videos provide, Janey learns first to repeat the elements, and then actually learns what is going on.  It's her way of progressing with learning.  Other people might first watch for plot, and then get so familiar with the show they start to memorize it, but Janey does that backwards.  The other is that when Janey suddenly gets upset, in other contexts, it might be something she's heard or seen a lot of times before that has now clicked in as scary.  For example, she recently became nervous about sirens, after hearing them for years.  I think she finally connected them to the fast vehicles with flashing lights, and they are finally scary to her.

It's interesting that echolalia, or delayed echolalia, seem like vital step in Janey's understanding of the videos for content.  Maybe repeating the lines in her head allows her to work on understanding them.  I wish she'd not have to get scared after the understanding kicks in, or maybe I wish videos didn't all seem to have a bit scary parts.  But gradually, in small ways, I sometimes feel like I'm starting to get Janey.

Not a good day

Janey is not enjoying this 3rd snow day and 5th day off in a row from school.  She is very much not enjoying it, to the extent she has spent a huge portion of the day screaming at the top of her lungs.  This is despite my decision to put every ounce of energy into engaging her and keeping her happy all day, after yesterday being a bit hellish.  That is not working.  Right now I begged Freddy to take her upstairs to my brother-in-law's apartment for 15 minutes, so I didn't go insane.

I did keep her happy for minutes here and there.  We played a game where she picked if I hugged her, kissed her, or said what I call "nice words" to her, and she had to pick a finger out of three to show me which she wanted.  She caught on right away, and got lots of hugs and nice words.  Later, we did workbooks.  I decided to try just doing the workbooks myself and having her observe, and talking constantly about what I was doing.  It worked much better than trying to get her to do them, and I gave her a marker to hold and at times, she jumped in and did parts of them.  Someone mentioned here about error-free learning, and I haven't researched it yet, but that is what I was thinking of them.  Janey learns so much from videos, and I figure me doing something live might teach her even more.  It kept us sane for a while, anyway.  I'm pretty good at preschool workbooks, if I do say so myself.

Overall, though, it has been a day of screaming.  At one point, she was screaming "I can't take this any more!" which was heartbreaking to hear, although I think it was delayed echolalia she possibly could have heard from me, which is not something I felt proud of.  But there does come a point of just not being able to take it.  Thankfully, I have Tony and I have the boys.  And usually, I have school. Or I can take her someplace, which is not even very possible now with snowbanks covering even a lot of parking lots.

I feel like a failure after a day like today.  I think about some of the blogs I read where mothers seem to have eternal patience with their autistic kids, and whose kids seem endearingly quirky instead of completely impossible to understand and comfort.  Of course, Janey isn't always that way, but it's always a minute away from being that way.  I wish I could video the screaming, but I worry that if anyone saw it, they would think I was a highly unsuitable mother for taping her instead of somehow helping her, and they would not realize I'd spent the last many hours trying desperately to get her happy, and that nothing I can do makes a bit of difference, and that I'd literally do anything that would make her happier, if I knew what it was.

My 15 minutes are probably almost over.  Tomorrow will be better.

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.

Autism speech, or Janey's speech, anyway!

"You say you want to take my socks on, please"

Janey said that to me last night, as she was falling asleep.  It's a pretty typical line from her, but for some reason I thought about it a lot as I too fell asleep.  It has a lot of the elements of her language in it---a lot of what I'd like to figure out about her.

"You say"  --  Janey has started using that at the beginning of a lot of utterances.  It's a little piece of echolalia, from people telling her what to say.  For example, when she's screaming her head off, we might say "You say 'I feel sad!'"  Or if she's supposed to say hi to someone, "You say 'Hi, Maryellen!'"  Mr. Ken, Janey's ABA specialist, has worked on that, by just having us say what we want her to say without the instruction---if we want her to say hi to someone, WE say hi to that person, and then kind of gesture to Janey to follow.  He's very good at getting that to work---me, not as much.  But sometimes it's hard to implement.  When Janey is crying and I say "I feel sad!", it's understandable if she sees that as a statement about myself (and usually I AM sad, if she is)  Whatever the reasons, I think Janey has decided that "You say" is a handy way to start a sentence.

"You want"  ---  And there's the classic pronoun reversal!  I've read that it's very, very common in autism, and very hard to find a way to stop.  One place I read said they really don't understand how typical kids DON'T reverse their pronouns.  How do they learn that when someone says "I", they are talking about themselves, and that it's not just a way to refer to that person?  If Janey is asked "Do you want bacon?", it seems to make sense for her to say "You want bacon" to mean "I want bacon".  Janey doesn't always reverse her pronouns, and it seems a little random when she does and doesn't. But she often does, and I have no idea how to work on that.

"to take my socks on"  ---  That's Janey's other reversal, and not one I've heard is part of autism.  She says the opposite of what she wants a lot of times.  She wanted her socks OFF, so she says to take them ON.  That's a rare thing I remember from her pre-autism speech.  When she was two or so, she always said "Pick me down!" when she wanted to be picked up.  It's like she takes the state she's in, that she doesn't want to be in, and says that.  So we get "buckle me out!" when she wants her seat belt on, "put the TV off!" when she wants it on, "Turn off the light!" when she wants it on, and "Put on my pull-up!" when she wants it off.  It would be harder to figure out if it was not usually evident what she really means, but I still wish I could figure out how to have her clarify those statements.

"please"  -- Now there's a nice one.  Janey has gotten wonderful at saying please.  Most everything she says is a request, so please usually fits in there someplace.  She's even learned how to say it in a pleasing way, in a very sweet voice.  However, like everything with her, there's a catch.  We sometimes call please the magic word, and she believes that literally, I think.  If you say "please" nicely, anything can happen!  There can suddenly be bacon when there wasn't any bacon in the house before, we can go for a ride in the car at 3 am instead of sleeping, I can stop my foolish insistence on brushing hair if she asks nicely enough---it's a magical word indeed!  Her use of please is also delayed echolalia at work.  She's heard it enough, so it automatically gets put in there.

I love it that Janey can talk.  A lot of kids with her level of autism and intellectual disability can't, and there was a time right after her regression, for a few months, when we thought she was losing all speech.  Her speech, however, is deceptive.  Almost all of it is like the example here---a pieced together and echolalia filled and odd way to make a request.  But I'll take it.  I know I am lucky to be able to hear her voice.

Why doesn't Janey talk more?

For some reason, this question was hitting me like a ton of bricks this weekend.  Janey CAN talk.  She can say a lot of things.  She understands speech quite well, at least basic speech.  But her talking is very, very limited.  She uses phrases she's used before almost always.  A unique sentence from her, once analyzed,  almost always turns out to actually be delayed echolalia---something she's heard from a video, song, school, etc.  She learns new words very slowly.  An example is "towel", that I wrote about before---for years, she said "scarf" for "towel".  Now she says towel pretty consistently, but why did that take years, when she can memorize huge chunks of dialogue in seemingly a day?  And why are the sentences she say often so ungrammatical?  For example, they almost always start with "I want" and then use phrases that don't agree or fit, like "I want snuggle on Mama's bed", one of her most said sentences, or "I want go to visit Pino" (her uncle).  Why does she cry sometimes for hours because she can't find a way to tell us the simple thing she wants or what is bothering her?  Why does her speech not progress, despite great speech therapy and being around talkers and going to school?  Why is it so hard for her to answer questions?  Why does she often call people the wrong names, although I'm quite sure she knows their names?  For example, this morning when saying goodbye to me at school, she said "Goodbye, Ms. Janet!" (the name of her speech therapist), and in fact, all weekend almost everyone was called Mr. Janet, even Tony.  It is vanishingly rare she uses William or Freddy's name.  Why does she request things using a question?  The example of that is when she likes a song she hears in the car from my iPod.  She says (frantically) "DO YOU LIKE THAT SONG?"   That means "don't let the song end, replay it fast, I really like it"

There must be something just mixed up in the speech center of her brain, something that makes straightforward speech very tough.  I wish I understood it.  A strange example of the crossed wires or whatever they are was this morning.  She liked a song in the car, and said her usual "do you like that song?" but I was confused as to whether she meant a song that just had ended or one that just started.  She started screaming "Christmas!  Christmas!  Do you like that song?"  I hadn't played any Christmas songs, but I took a guess and played "Living on Love", an Alan Jackson song that has the word "wings" in it.  I think that was it---she's heard "wings" mostly in Christmas songs about angels.  Somehow, instead of the many straightforward ways she could have expressed herself, that was how she did it.

When Janey gets upset, we are trying more and more to encourage her to tell us what is wrong, but sometimes that almost seems mean, because it's so hard for her.  It just doesn't seem to come naturally to her to translate feelings into words.  We give her choices, starting the sentence for her "I am crying because I am...." and she will sometimes plug in "angry" or "sad", but I think those are usually guesses.

Lately she loves Happy Meals, but despite us using that word for them a lot, she asks for them by saying "I want chicken nuggets.  I want French Fries.  I want chocolate milk", breaking down what is in them.  Then we try to get her to say if she wants Burger King or McDonalds, but she will almost always pick whichever we say second in the question.  If she does mention them on her own, it's always "Old McDonalds", from the song.  When she makes an association like that, it's very hard for her to break it.  For example, she usually calls her ABA specialist "Mr. McKen" although his name is Mr. Ken, but both her classroom teachers last year had names that started with "Mc" and I think she came to see that as some kind of teacher preface.    It seems like once she learns a rule, she overgeneralizes it.

Sometimes I feel like if I could break the code that Janey's mind uses for speech, I could teach her things much more easily.  I wish I understood what the speech center of her brain is like.  I daydream often that the Vulcan Mind Meld is real, and I can join minds with her and figure out what goes on inside her brain.  I think it's an interesting and confusing place.

First time saying "towel"

Janey has always called towels "scarves". If she's in the bath and wants to get out, she says "You want a scarf!" The two have similarities, I guess, as they both get wrapped around you and keep you warm, but it seems like she's encountered towels much more in her life than scarves, and it always is interesting to me to try to figure out how she picks what word to use. Today, though, when she wanted to get out of the bath, she said "We'll get a towel, to wipe your nose" A lot about that is typical of Janey's speech. She often, but not always, reverses pronouns, a very common trait in autistic speech. She usually speaks in phrases, which often are echoed from ones she has heard once or twice. I can't imagine when we used a towel to wipe her nose, and it's a little gross to think of, but we must have said that. And I'm thinking she often gives a reason in the second part of the sentence, which I realize I usually do, and she's probably copying from me. I try to kind of "add value" to much of what I say to her, to give her more words to use. For example, I'll say "Let's get on your coat, to get ready for school" or "Put on your shoes, so we can go in the car" So in saying towel for the first time I can remember, Janey either copied a phrase she heard at some point, or created her own sentence using a set structure. If no-one had ever talked about wiping their nose in connection with towels, that's kind of more interesting. She might not have been able to think of how to describe what towels do---dry me off? Warm me up? but she could think of what PAPER towels sometimes serve to do in our house, as we don't usually buy tissues. She hasn't said paper towels either, but the word is the same.

The language part of Janey fascinates me. It's very unlike typical language. It seems like the language part of her brain just doesn't work in a typical way, and she has to use other skills to create language. She is extremely good at remembering exact words of songs, and I feel like she uses that for language---"Let me pull up a time I heard the word I want to say, and use that lyric to make them understand" And the fact that after all these years, she used "towel" for the first time makes me hopeful she is still progressing in vocabulary. I wish I knew better how to use Janey's strengths to help her do so.

Understanding Speech

One of the somewhat quiet bits of progress Janey has made in the last year or so is her big increase in understanding what we say. Previously, she probably talked more than she understood, had better expressive language than receptive, which is a rare setup I think mostly seen in autistic kids who are verbal but not really usefully verbal---kids like Janey that repeat a lot and use a lot of delayed echolalia. But lately, she is understanding much more, which can be seen by how she follows directions (when she wants to). For example, this morning she wanted to watch a certain episode of The Backyardigans. She brought me the Wii remote (as we watch it on Netflix through the Wii). That remote had dead batteries, and so I said "Bring me the other remote---this one isn't working". I say things like that often not expecting any response. It's part of just keeping on talking, giving her as much speech to hear as I can. But today, she immediately went over and found the other remote and brought it to me. I was very happy.

We have to be careful with this increased understanding at times. She listens to everything we say, and can get upset by things she hears and perhaps only half understands. If we mention dogs, or loud noises or other things that scare her, not in any context of something scary, she might hear the word and get upset. Or if we casually discuss ideas for dinner, and something like "Burger King" comes up, she is putting on her shoes and ready to head out for a chicken nugget treat. It's wonderful she understands like that, but hard too, in that she partially understands often, and I can't imagine what a confusing world that must create. My analogy is when Tony's parents were alive, and spoke in Italian dialect. I got so I could understand about half of it, so I could kind of follow a conversation, but not really. It felt very scary and lonely at times---better than not understanding at all, but in some ways not, because I could understand enough sometimes to misunderstand.

But it's progress. It's wonderful to be able to ask Janey to do little things like bring me the phone or go see Daddy and have her actually do what I say. It's a very nice step forward.