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.

Talking about angry

I had a feeling yesterday afternoon would be a tough one.  Tony had a doctor's appointment after work, and so was going to be a few hours late coming home.  Janey doesn't care for that---not at all.  We've lately had some pretty good afternoons, but we do so by following a routine that is quite unchanging, right down to what I say when.  She gets off the bus, I tell her I missed her a million and was crying seven times for her.  I've said that every day for many years, and if I don't say it, she is not pleased.  Then she takes off her shoes and flings herself on her bed, and hugs Special Pillow for a bit, then asks for cheese.  I get it, cutting her slices.  She then asks for salami, and then does her own hunt to see what else there is.  I try to have a jar of salsa around, for a lower calorie treat.  She eats that, and then wants to snuggle again for a bit, then she asks for videos.  Sometimes she tells me which one she wants, something she wants me to browse.  Either way, we watch them until it's time for Daddy to get home, around 4:45.

A sign that would do no good

I told Janey early on that Daddy was going to be late.  She didn't react, but like clockwork, at 4:40 she started looking for him.  I reminded her he wasn't going to get home at his regular time.  Once it became apparent I was telling the truth, she started to scream.  And then screaming got loud, fast.  I ignored it as long as I could, but then, I asked her to stop.  She didn't, and I asked more firmly.  She didn't again, and I suggested she go in the "screaming room", a long ago strategy to try to contain her screaming to one room, the bathroom.  I went with her.

In the bathroom, after more screaming, I did what we so often do---thought up a song on the fly.  It was more of a chant, really.  It went "Janey is ANGRY because Daddy is LATE!"  I clapped on the "angry" and the "late".  Janey started repeating it near immediately, and we chanted it probably a hundred times.

How I must have sounded to Janey

Then she surprised me.  I did what I often do after she gets a sentence down.  I said the "Janey is angry because..." part and left the ending out, expecting her to say "Daddy is late".  Instead, she said "Mama said NO!"  She said the "no" in a (I hope) very overstatedly nasty voice, and while saying it, shook her finger in my face.

Well, I hope I don't sound like that when I say no, and I don't THINK I usually shake my finger in her face, but I can't say it's impossible....And I thought about it.  A little before Janey started screaming, I did say no to her.  She asked for more cheese.  We are trying to think about calories a bit more with her, and she'd already had a good deal to eat, so I said I didn't think we needed more cheese right then.  She didn't react much at the time, but I guess it stayed in her mind.  Or perhaps she was referring to when I told her not to scream, after she had started the screaming.  Either way, I made her angry and she let me know.

I've been working on getting Janey to verbalize her feelings, or on a more basic level, to recognize what she feels as angry or sad or hungry or happy or surprised, every chance I get.  I feel like the more she understands what her feeling are, the more she can tell us what she is feeling.  Yesterday felt like a bit of a breakthrough.  Maybe it wasn't the answer I wanted, but she told me that I made her angry. I am going to look at how I say "no".  There will still of course be times I have to say it, but I'll try to say it in a kinder and softer way.

After the screaming talk, the afternoon actually went well.  Janey calmed down a huge amount, and we watched videos and had a good time.  Just before Tony got home, one of her videos talked about having a cold and sneezing, and Janey started one of her favorite games lately, pretending to sneeze.  We do a lot of pretending like that---pretending to sleep, or cry, or get angry, or cough.  It seems like a way to work on feeling and symptoms and so on without actually having to get angry or sick.  I'm pleased that Janey seems to get the concept of pretending, at least in a basic way.  We pretended to sneeze back and forth for a good ten minutes, and then Daddy was home at last.  And I took full advantage and closed myself up and read for a long time.  Not a bad afternoon, overall.

When Janey got studied and blew our minds

Janey is part of a study of autism at Boston University.  They are interested in kids who are low verbal---who talk but don't talk a lot, and she fits right into that category.  We first started with them just right before all hell started breaking loose, when Janey went to Bradley Hospital and then in fairly short order had her appendix burst, so quite a while went by without us going to the study.  I called them a few months ago and got us started again, and we've been twice since then.

Dedicated parking!

BU has a great setup for the study.  They have a dedicated area, which has been designed to be very autism-friendly.  It's calm feeling, there are toys and books in the waiting area Janey actually has an interest in, they have a dedicated parking space for participants (a BIG deal in the city!) and most of all, everyone we have met working on testing or on interviewing parents seems to be absolutely wonderful at what they do.

Janey seems to love going to the study.  She's never one to have much trouble separating from us, and she goes off happily with the tester while Tony and I get interviewed about her by the head of the study.  The few times we went a few years ago, and the first time we went this go-round, the interviewing lasted as long as Janey's testing, but this last time, we finished the interview and so got an offer to go watch Janey being tested, through a one way mirror.

Well---that is where we got our minds blown.  We saw a Janey we've never, ever seen.  She seemed totally at ease, and very, very on.  She's been in a great mood lately, so that was part of her, but a lot of the credit has to go to the tester, a young woman who had the perfect mix of calm voice, persistence, encouragement and firmness.  

The testing was a mix.  Part of it was identifying pictures, and Janey whizzed through that---words I knew she knew like "cow" and "apple", but lots of action verbs, which I had no idea she really knew.  For example, a picture of a boy swimming got the response "The boy is swimming"---perfect grammar and a full sentence.  With a picture of some birds, Janey first said "bird" and then when asked how many, she actually counted them and correctly answered "four".  We looked at each other in the darkened observation room in amazement.

Some of the tasks were non-verbal things, like sorting silverware or doing little block puzzles.  Janey had no trouble at all with most of them.  Sometimes, she had to be encouraged along a bit, but she didn't get upset, she kept working and she did them!

It was interesting to us that what she consistently got wrong was what I've never had any luck at all teaching her---colors.  She honestly seems to have no clue about colors, and sometimes I wonder if she might be colorblind.  I've been told, though, that many kids with autism have a hard time with colors.  She also gets a little confused on shapes.  She called a star a diamond---sort of like she knew it was one of the more exotic shapes but couldn't bring the name to mind.

Toward the end of the session, Janey was getting a little restless, and she started singing to herself.  It took me a while to recognize the song, but when I did, I was happy---it's a song I love that she's never shown much interest in---"I'd Really Love To See You Tonight".  An old 70's soft rock classic!  She just kept singing the first few lines---"Hello, yeah, it's been a while, not much, how 'bout you?"  She probably sang those 100 times over.  What struck me was how although it looked like she wasn't really paying any attention to the tasks at hand, she kept getting them right.

On the way home, as I processed the whole experience, a few thoughts kept popping up.  One is that Janey's mind truly is different than most.  Not less than most---different than most. It made me think how often I've assumed she was paying no attention, because in her situation I'd not be able to pay attention while screaming or singing or watching a show intently, but from seeing her at work, I realized her mind seems to work on more than one track at once.  

I also kept wondering how often Janey is bored out of her mind.  I've always suspected and in fact felt quite sure she knew more than she showed, but I don't think I realized how much more.  However, it's so hard to access that knowledge, and to know what she knows and how to teach her.  Tony put it well.  He said he always tries to not bring work home mentally, to leave work thoughts at work, and it's like Janey does that with school, and in fact with much she learns in any way.  If it's not something she needs to show in a particular situation, she doesn't show it.  I've asked her to count lots of times, and to use action verbs, and all that---but she seems to feel they aren't something she needs to show she knows, unless it's obviously a testing situation (and then of course only if she is in the mood)

I'm very glad we are part of the BU study. It's the kind of study I heartily support---not one that is aiming to figure out WHY she is autistic (and unspokenly, figuring out how to prevent future autism) but one that is trying to figure out the autistic mind---for that is indeed also my main task in life---figuring out Janey.  It's going to be a lifetime study on my part, and one worthy of the time spent.

Janey's Mysterious Mind

If I had one wish, I would put aside the regular wishes like a billion dollars or unlimited more wishes (well, maybe not that one!) and wish to be able to be inside Janey's mind for just one day.  If I could see how her mind really worked, what the set-up is in there, what she understands and what she doesn't, I think I could be a better parent to her.

I have a few examples from recent days of my glimpses into Janey's thinking and abilities.  They are interesting, but like blurred photos or an book with some pages missing, they give me only a hint of what is whirling up there in her mind.

One of the things I'd most like to see is how she arranges memories.  I have a feeling they are like YouTube clips, little stored segments that come up when the right keyword is entered in.  The other day, I put a Kermit the Frog top on Janey.  I said "Look at this shirt!  There's a picture of Kermit the...." waiting to see if she would finish the phrase.  She didn't at first, and I let it go, but a minute later, she said "Kermit the Frog!" Then she started reciting, word for word, a skit from Sesame Street, something on a video I'm quite sure she hasn't seen in years, as we lost it, where the Count gets a job as an elevator operator and Kermit gets on the elevator.  She knew all the lines, as she usually does.  I picture her brain getting the Kermit keyword and bringing up the clip, stored in complete form.  It's an interesting form of memory, but it doesn't allow for easy answering of questions.  She knows who Kermit is, but unless I'd known why she was talking about the Count, I wouldn't have gotten what she was saying.

Other times, Janey uses the clips to try to communicate.  This evening, she took a shower and I was drying her as she got out.  As it wasn't a washing hair shower (she just likes to take showers a lot, and sometimes I let her just take one to enjoy the warm water), her hair wasn't really wet, and I wasn't drying it.  That wasn't the usual routine, and Janey had the look of wanting to tell me something.  Suddenly, she said "Yeah, Sister!" and then started singing "I'm gonna wash that man right out of my hair!"  She likes that song, and she's seen the clip from South Pacific, where the star dries her hair with a towel.  She was telling me that I needed to dry her hair.  I pictured her doing something like a Google Image search, finding someone doing what she wanted doing, and then using her memory to try to give me that image.  It's complex and interesting, but it's not practical in a lot of situations.

Although long periods can go by without Janey showing her hand, I do think somewhere in her mind, in some conditions, she can read.  This morning, Tony put on The Pink Panther on YouTube for her when she asked for it.  We've often noticed that when we aren't looking, suddenly the computer is on something totally different than what we put it on.  We assume usually she is clicking on the little suggested videos that come up next to the video she is watching, but sometimes, that seems unlikely.  Today, I was watching her when she didn't realize I was, and I saw something surprising.  She closed YouTube, then reopened the browser and went to the bookmarks (she could have done this right from YouTube, but she is very tidy on the internet and often just goes around the house closing computer windows)  The list of bookmarks was quite long, and she scrolled down it and found what I believe she was looking for, Weird Al's "White and Nerdy"  She clicked on it and happily watched it, then was able to click on some other Weird Al stuff that came up on the sides.  I don't know how she could tell that particular bookmark was what it was without reading it.  When she saw I was watching her, she gave me a look that was a little sheepish.  I said "You can read, can't you?"  Of course, no answer.

I was thinking this all through today, and feeling a little frustrated.  Why can't Janey put her amazing memory and her hidden abilities to use?  Then it occurred to me---she does.  She doesn't do so in the way we might want, but she does.  She enjoyed remembering the Kermit video, she managed to tell me what she wanted me to do with her hair, she got to watch the Weird Al video she wanted.  When I push for more, the times I have, she either simply acts like she doesn't know what I am talking about or she gets actively upset.  So---do I accept she's doing what she wants to do?  Or do I call her bluff and try to make her use her abilities to be more like the rest of us?  I don't know the answer to that.

Being Tough---my own way

First, I want to thank everyone who reads this blog.  You guys keep me going.  I wish I could know you all in real life.  Maybe someday, I'll travel around and try to meet every last one of you.  In the meantime, it's great to hear from you here, have you as friends on Facebook or just know you are out there someplace!

Last week I was hit with a huge amount of self-doubt.  There were lots of reasons, some I'm not going to get  into just yet, but I was feeling hugely down on myself.  But today, thanks to thinking about things a new way with the help of all of you, I'm feeling much better.

I'm never going to be tough in some ways.  You will not see me organizing fundraisers, or hiring top advocates to come with me to IEP meetings, or educating everyone that looks at Janey with a hint of anything but total support.  I am thankful there are people that can do those things.  If there weren't, we'd be back in the bad old days, and Janey would not even get an education.

But I am tough in other ways.  I can't tell you how many times I've had a morning that for many, for most outside the wonderful world of Holland trips, would be the roughest morning they've ever had, and still, I somehow got Janey dressed and ready for school, and drove her there.  I don't know how many nights from hell I've had, where Janey barely slept, screamed or laughed all night, was possessed by whatever possesses her, and still, I got up the next day and went about my life.  I've stood strong while Janey lashed out at me with hitting or biting, and responded with hugs and comfort.  I've continued to shop while Janey screamed in a way most people have never heard a child scream, all the while holding her hand and whispering words of encouragement.  I'm not looking for rewards for this, but I'm realizing it's something to be proud of.

Many times, I've felt guilty because I don't go to more school meetings, I don't go to autism rallies, I don't go to the statehouse to advocate for autism.  I feel I don't do enough for the greater autism world.  But this morning, a song came into my head.  I'm not very religious, but I love religious music.  It's my form of faith, I guess.  Going to Sunday School growing up in rural Maine, there was a children's hymn we sang every Sunday.  Here are the lyrics...

Jesus bids us shine with a clear, pure light
Like a little candle, burning in the night
In this world of darkness, we must shine
You in your small corner and I in mine!

I've always loved that hymn.  I picture a huge, dark room, and me in one of the corners, burning a small candle to fight the big darkness.  I can't light up the whole room, but I can light up my corner.  And that is what I am trying to do with this blog.  I can light my little corner.  I can write honestly and truthfully and in a heartfelt way.  That is something I am able to do, and it's my way of lighting my small corner.  It's my way of being tough, but true to myself.  And I'll keep doing it.

The storm and the screaming

We are in the middle of what the weather people keep reminding us is an historic storm here in the Boston area.  I was skeptical, but yes indeed, it's pretty bad looking out there, and they keep saying it's going to get a lot worse.  Driving has been banned, and it's a little cool looking at the major road we live on almost empty---like a tiny taste of living on a back road for just tonight.  I'm able to enjoy the view and the storm because Tony made it home.  He was away all week, and had to fly back into Boston today, which was a very, very iffy proposition.  He got an earlier flight than he planned, and made it home around 1 pm.  I was thrilled to see him.  Janey didn't have an extra bad week, but being a single parent even for a week of the three kids---it's more than I can do.  Or I shouldn't say that, because if I had to do it, I'd do it.  I'm being just like the "I don't know how you do it" people.  But I'm glad I don't have to do it.  It's very hard.  I don't get a break in the night when she wakes, I don't have some to ask to watch her for a while so I can rest or work, I don't have someone to laugh instead of cry with, I don't have a co-worker in the incredibly tough job that is Janey parenting.

Janey missed Tony.  It's hard to say how she feels, exactly, about him being gone, but I tried to prepare her, and then, throughout the week, remind her as I picked her up at school that he was "gone on an airplane trip, but Daddy will come back"  I made up a few songs, and repeated the basic message as much as I could---Daddy is gone for a while, but he will come back.  Today, when I knew he'd be home in just a few minutes, I told her "Guess who is coming home from their airplane trip?" and she said "Is it Daddy?"  I was thrilled with that.  I haven't heard her ask that kind of question before.

She was very happy to see Daddy, but within a few hours was screaming more than she had for a while.  I'm guessing it's a few things combined.  The weather is weird, and she must see that.  She was excited to the point of overexcited to be with Tony, and that can turn fairly quickly into overwhelmed screaming with her.  She also probably expected them to go out someplace right away, as they often do---an exciting trip to the store or something---and we are banned by law from going anyplace right now!  A little part of it might have had nothing to do with Tony.  She was playing for the first time in a while with the talking robot doll I got her for Christmas, and the doll, Serefina, says "If you're there, SAY SOMETHING!" which she kept repeating.  I asked her if that was scaring her, and told her we could put the doll away, and it might have been coincidence, but that seemed to calm her down.  I don't know if she totally gets that the doll isn't alive, and by coincidence, she's been watching Toy Story lately, which could possible put the idea of living toys in her head.  Who knows?  It's like a complex guessing game or mystery figuring out what is in her head, and one that has no answer key, so I never know for sure if I get it right.

We'll be riding out the storm for a few days here.  I hope we get through it without too much insanity.  I'm very thankful we're all together and warm and have enough food to last us.  Hope anyone else in the path of this winter monster does too!

A Bedtime Song

For years now, as I got Janey to sleep, I've sung her songs. I did this with her brothers too. I'm no expert singer, but I love thinking of them someday hearing the songs I sing and thinking of me, and it's also just a relaxing way to calm down at bedtime. For the past year or so, part of my bedtime routine with Janey has been to first ask her if she will sing ME a bedtime song. Her part of the routine is what her part in many of our routines is---to say nothing. But last night, after I asked for the maybe 300th time "Will you sing me a bedtime song?", she replied. She replied by singing me all of "Row, Row, Row Your Boat", perfectly and in her sweet, sweet little voice. Tony happened to be there to at the time, and we both were crying our eyes out---luckily it was dark as Janey would not have gotten why we were crying!

Janey has always loved music, but the last month, it seems her love had kicked up a notch. She is starting to notice and have opinions about certain songs and singers more, which she shows by asking for the songs over and over. I've got to give a shout-out to The Gatlin Brothers, who I know just about nothing about. They are Janey's favorite group, starting from her love of her favorite song "All the Gold in California" Why exactly this song speaks to her so much is beyond me, but boy, does she love it. She has also gotten extremely fond of "Tie a Yellow Ribbon 'Round the Old Oak Tree". She loves to belt out the line "Now the whole damn bus is cheering", which I kind of hope she doesn't sing at school! She also loves "Morning Train" by Sheena Easton and "Everyday" by Buddy Holly. I've made a little playlist of her songs for the car, and although I must admit I'm getting sick of them a bit, it's worth it to see the joy on her face when they play, and to hear her singing them at random times. It's a lot of fun to see what her taste in music is.

Music is also a way we can all have fun as a family, even with TV watching. Janey was mesmorized by Madonna's half time Super Bowl show, and she loved watching the beginning of the Grammys with us. It's wonderful when we have something the whole family enjoys and we can do it together, without it being a situation where we are doing something FOR Janey---not that we mind that, but it's more fun to just do something WITH Janey. All five of us love music, although we have differing levels of talent, and I look forward to seeing what the next song Janey falls in love with is!

Mania

One thing Janey does that I haven't seen mentioned in anything I've read about autism----she has manic spells. When she is in one, she talks non-stop while running back and forth around the house. It's when we hear the most talking, but it's a long monologue without any connection to much. She tells stories, sings whole songs, recites nursery rhymes, lists things, and just never stops. It's very, very odd to see. Last night she was in one. She started out talking about candlesticks, she is a little obsessed with Jack Jump Over the Candlestick. Tony put down a little candle for her (not lit of course and not in a stick!) and she jumped over it about a million times. She sang the entire patriotic sing-along the Pops did for the fourth, she talked about Ravenpaw a lot (Maryellen's cat that she is also obsessed with), she told Kipper stories, she jumped around crazily, on and on. She does more talking during one of the those times than she does the entire rest of the week. It makes me know the words are in there someplace, but just don't come out on demand.

I have started pointing my finger in rhythm to certain sentences she needs to use, like "I want to watch Maisy", with a point for each word. It seems to help her to say them.

A phrase she often adds to the end of sentences about things she wants is "to feel me better", for example, tonight she said "Daddy, I need a blanket to feel me better".

Everything I read says talking at all at age 4 with autism is a good sign. But her talking just really never seems to progress, it often goes backwards.

One encouraging time today---she wanted an M&M and I said "what color?" and she said right away, "Blue". So at least she understands the category of colors.

Getting tired so this is getting random!