The Sticker Book

Recently, after being amazed by seeing Janey be tested as part of a research study, and after some surprising, great talking she's done, several thoughts are in my mind constantly.  One is how bored she might be.  Because her talking is limited, I think we often limit what we talk to her about.  Quite frankly, it can be hard to think of conversational topics when your conversation partner rarely talks back or brings up anything new.  So I've also been thinking about ways to expand her knowledge, to give her new ideas and facts and interests.

Puffy stickers

Janey is absolutely an auditory learner.  That seems to be rarer in autism than being a visual learner.  So much of what I read as advice for teaching kids like Janey assumes they are visual learners---picture schedules, communication devices that use pictures, choice boards with pictures---all that.  Janey prefers words.  She's made this quite plain, as plain as she is able.  I am the one that needs to figure out how to help her learn in an auditory way.

So---my inspiration for making a sticker book seems strange.  What are stickers if not little pictures? But when I had the idea of the book, I had a feeling I'd hit on something.  The trick is---the stickers are for ME.  I'm the one that loves them, I'm the one that learns well visually.  I'm the one that needs new ideas for talking.

And I love stickers.  There, I've admitted it---I'm a middle aged woman who adores stickers.  I always have.  So the idea of making a huge sticker book for Janey appealed to me very much.

Some Kawaii stickers!

I got started by ordering a sketch pad and a couple lots of stickers from Amazon.  I ordered a big pack of puffy stickers---sheet after sheet of different kinds, and a pack of stickers of the kind you put on cars, all assorted.  Then on Etsy I discovered something called Kawaii stickers.  I thought at first Kawaii was a brand, but it's actually Japanese for a concept much like "cute".  There are a HUGE amount of kinds of Kawaii stickers---I've since found a few online stores that sell them very cheaply, and I don't think I could ever run out of different types.

An animal themed page

I had a lot of fun sticking all the stickers I had so far in the book.  And then I gave it a try...I showed the book to Janey, picked a page at random and then a sticker at random, and showed it to her, and talked about it.  Talked about it in the way we've come to figure out she likes best---in a silly and highly enthusiastic way.  Several of her breakthrough sentences lately have been ones asking us to play various verbal games with her---pretending to sneeze, making high squeaky "monkey" noises, things like that.  The sticker I first hit on was a ghost.  I said something like "There's a ghost!  It goes WHOOOO HOOOO in such a creepy way!  See that silly ghost?"

A little bit edgy and weird for my near teen

Janey loved it.  We played with ghost noises for quite a while.  Then I switched pages and asked her to touch the sticker she wanted to talk about.  We were in a page of Shopkins stickers, and she found a picture of corn with eyes.  I talked that up a lot "That's so silly!  Corn never has eyes!  We eat corn!  It comes in cobs.  You like corn.  Let's find some more corn pictures!"  We found some more on that page, and some on other pages, and that led to other topics---one of the corn pictures featured a rainbow, and I started talking about colors, one had corn next to some other food, holding hands, and I talked about how they were friends...things like that.  Before I knew it, half an hour had gone by---a full and fun half hour.

Camping, cooking and Frozen

Since then, I've pulled out the sticker book every day, and Janey seems to be looking forward to it.  She finds her favorite stickers quickly, but is also open to new stickers.  I feel like I've increased how interesting and varied our talking time together is by a huge amount.  And...I have an excuse to look for stickers to add!

In the broader picture, the whole sticker book idea brings up a couple lessons I've learned along the way.  One is that Janey knows if we are enjoying what we are doing and are engaged in it.  I'm going to stick to a way of teaching that I like much more than one I don't, and with Janey's extreme ability to read tones of voice, she picks up on the fact I'm having fun, and she joins in.  Another lesson goes along with that well-used phrase "You've met one kid  with autism, you've met one kid with autism" All the visual schedules and picture-based AAC programs in the world don't change the fact that Janey learns by hearing.  And that I don't, and that I need to figure out how to bridge that gap, how to respect what she is learning every day a little more how to tell us.  If that allows me to indulge in a long-buried sticker passion---well, all the better.

On looking for positives, medication and feelings

Yesterday, the positives were a little easier to find.  They still took some mining, but not quite the all out intensive mile deep mining operation they had the few days before.

The change, and I hate to admit this was the change, was that we put Janey back on her medication.  Tony took her to her psychiatrist on Tuesday night, after things just getting close to completely unbearable with the screaming and aggression, and we got the okay to put her back on the two medications she'd been taking for a while (not the new one she took before getting sick)  I hated to do it.  But it's not about what I hate.  It's about Janey, and she certainly showed us that once she felt physically healthy again, she needed that medication.

What the medication does it make it possible to actually try other ways to help Janey---to calm her down just enough so that we can use other methods along with the medication to keep her happy.

Yesterday was a long day, still.  Janey, although screaming much less, still was doing her routine of asking to go to Maryellen's house, over and over.  Toward the end of the afternoon, she hit me when I said no.  She did this after seeming to think about it a moment, like she was thinking "Hmm, maybe a good slap in the face is what Mama needs to understand me.  I'll give it a try!"  There was that much of a delay.

I decided to try a little dialogue.  I said "Ask me again if we can go to Maryellen's house, and I will say no"  I didn't want to set her up to think I might say yes.  She asked again, and I said no, and then said immediately "Now you say 'I feel ANGRY, Mama'"  She said it, and I immediately did the whole positive routine---the high five, thumbs up, A-Okay, with a big hug and praise.  I then did the routine over again, about 10 times.  She loves routines and repeated speech, and she loves the praise bit, so she enjoyed it.

Then she surprised the heck out of me.  Around the 11th time we did the routine, instead of saying "Angry", she said "Sad"  I was truly taken aback.  I hugged her over and over and said "You feel angry AND sad!  Great job talking!"

I decided the time was ripe for some more feelings talking.  I had her guess my feelings, something that is very tough for her.  I made a very angry face, telling her beforehand I was going to, because I didn't want her to think I was really angry, and then I asked her what the face was.  I had to prompt her a lot to get her to say angry.  I did the same thing with sad.  Then happy, and she guessed happy much more easily.  In fact, she often said "happy" for sad or angry, which makes me wonder if she is confused about how people are feeling a lot of the time.

She gave me another surprise.  I asked her to make the faces.  She can't do angry or sad on command at all, although she can do happy---maybe because she WAS happy right then.  I was thinking she really didn't get making faces.  But then I asked her to do surprised.  I showed her a surprised face---no luck.  Then I said "Surprised faces have very wide open mouths.  Try surprised" and she did---perfectly.  I should have known.  She is so auditory.  A face that can be explained in words is so much easier for her to understand.  It made me feel a wave of sadness at how hard it must be to be that auditory but to have such a very hard time talking.

I hope today is again a calmer day.  It's been a long stretch here waiting for summer school to start.  It finally starts Monday, and I have to admit I'm looking forward to it like Christmas.  I kind of bet Janey is too.  We've had enough of each other, but I do hope we will end this long sickness/summer stretch on a slightly higher note.

A better weekend, with guesses why

I've said many times that Janey's moods often seem to have no rhyme or reason.  Of course, that doesn't stop me from trying to figure them out.  I have to.  If there's any pattern, I have to try to find it.  I think I do this more with bad moods than good ones, but I'm trying to make more of an effort to figure out Janey's good moods, as after all, they are the moods I want her to have more of.  This weekend was mostly a good mood weekend.  That's not to say there weren't crying moments, or hitting moments, but overall, Janey's mood was quite good.  So...why?

I have a few theories.

One factor might have been that we made an effort to get Janey out of the house for a good period of time each day.  These weren't exciting trips.  They were shopping trips with Daddy, going to a lot of different stores, and a trip to take William back to college.  But when we told Janey she was going to go for a ride in the car, each time, she was thrilled.  She is an easily bored kid at times, and she craves being places other than here.

Another possible factor----I tried, each night and each morning, to outline what the day to come would be like.  I think one problem on the awful day from hell last Thursday was I didn't do enough to explain to Janey why she was home.  I couldn't at night---we got the call about school once she was already asleep, but I think the minute she woke up, I should have explained very clearly that she was going to be home, Daddy was going to be at work, and her brothers were home.  Many people have suggested visual schedules for Janey, and we have tried them, as they have at school, but Janey simply isn't very visual.  I have never once seen her look at a visual schedule unless I directed her to.  But anyone that knows Janey knows that she remembers everything she hears.  She might not give an indication of that, but she listens very well.  So I've started saying each night something like "Tomorrow is a school day.  You will go to school, and Daddy will go to work.  Freddy will go to school, and William is away at his college school.  You will come home, and Daddy won't be home yet.  Freddy will come home, and then Daddy will come home."  I tell it slowly and in parts, and repeat it a lot, and I think this helps Janey know what to expect.  So she knew, this weekend, that Daddy was home and she was home.

We also had sunny weather, which we haven't had much of this winter.  Janey loves the sun.  She somehow remembered a song I can't recall playing for her, Katrina and the Waves singing "Walking on Sunshine" and she sang that a lot this weekend, with a look of joy on her face.

We also, as much as possible, gave Janey a lot of concentrated attention.  For whatever reason, she is no longer much interested in TV or videos.  I'm sort of glad about that, but I admit, we got used to that being a lot of her day.  So we are needing to step up to the plate and fill in that time.  Luckily, Janey has gotten very into books lately.  This is a dream come true for me.  We spent a large part of the weekend reading.  She loved hearing "McElligot's Pool", an old Dr. Seuss book, and we read a lot of other Dr. Seuss books.  We also played toys a lot.  I put all of Janey's toys in one big huge bag, and started doing something I call The Lucky Dip---just grabbing a handful of them and playing with what I get.  This keeps us from getting too stereotyped with the play, which is good because if you do something once with a toy, that becomes for Janey what always must be done with it, and she gets upset if I change the routine.

Food, of course, also helps.  Daddy gave Janey huge amounts of food she likes, mostly in the morning, which is her preferred schedule.  The bacon, chicken, greens and pesto were flowing freely.

And, maybe, the mood stablizer is doing something.  I don't know.  It's so hard to isolate out what medication might be doing or not doing, just like it's hard to figure out if anything I've written here had anything to do with Janey's mood, or if she just somehow internally felt happier.

You will forgive me if say that I don't think the mood will last.  I can hope it will, but that is not usually the case.  I think the best we can do is try to figure out how to extend the good moods when they occur and to shorten the bad moods when they happen.  So I'd be thrilled if this mood lasts a few days into the school week, even!

Should I even be writing about Janey?

Lately, I've read a few blog posts and articles that question the whole idea of sharing thoughts and stories about parenting an autistic child.  The gist of them is that it's not our story to tell as a parent---that someday, Janey may want to tell her own story and that she might not appreciate what I've written about her childhood being out there in internet-land.  It's a very valid thought to consider, and I have been thinking about it for a few weeks.  I've concluded that I think it IS valid for me to write about her, and I'll give my thoughts and reasons.

The first thought I had, to be honest, was that Janey will never be able to tell her own story.  I hope I am wrong there.  I hope that Janey does learn to read, to write, to be able to tell me her take on her life.  I hope that extremely much.  But I don't think she will.  I know there are non-verbal people with autism who do communicate very well, through writing.  But I don't think Janey will be one of them.  It's not that I don't think she would ever be capable of that, although I do have my doubts about that.  It's more that she is not very focused on written or visual communication.  She's an auditory person.  She talks probably more than would be expected for someone at her level of functioning in other areas.  She listens pretty well.  She seems to have vast, vast stores of auditory memory---songs, lines of conversation, full movies.  But she has resisted most any attempts to convert this knowledge into written form, or to use a visual communication method.  So maybe she'll dictate her story?  I don't think so.  I haven't ever really heard of an autistic person who was minimally verbal in a truly communicative way at Janey's age who then became verbal in a way that could tell stories of the past, or give perspective into what is inside her head.  I hope I am wrong there, but I honestly don't see Janey being able to tell the world her own story.

Next, I had to consider WHY I write about Janey.  There are two major reasons.  One is to keep myself sane.  Writing is my release, my way to getting through the days, of working through my own thoughts, of being able to face the future.  Quite selfishly, I need to write.  Less selfishly, I need to write to be able to be strong for Janey, and for the rest of my family.  I need to know I can sit down here at the computer and write about my life and Janey's life.  Without that, I think I might give up.  That's the ugly truth.  The other reason I write is to provide support to others with children like Janey.  I think over the years, I've done that some.  I've had people tell me they feel far less alone after reading my blog.  I've had a few people tell me that I helped them go on after tough times.  That means the world to me.  I don't advertise my blog much, and I'm not part of the larger blogging world.  I am not good at that kind of networking.  But somehow, over the years, people have found this blog and have told me it's been helpful to them, and that is absolutely one of the things I'm proudest of in my life.

And so here we get a bit of a vicious circle.  I write about Janey so I can continue to parent her---so I can have the strength I need to be the best parent I have to her.  I write also to hopefully, in some small way, give strength to other parents.  Raising a child with autism is not easy.  I don't think even the most positive parents would say it is.  And raising a child to reach their maximum potential, to maybe someday be ABLE to tell their own stories, is even harder.  We need all the help we can get.  We need support from others that truly understand.  We need to know there's an outlet for all the feelings that this tough parenting gig brings up---sadness, frustration, sometimes anger, sometimes despair and sometimes, yes, extreme pride and happiness.  We need that connection.  Without, I know I couldn't go on.  So in order to give Janey the best chance at a full life, and the little bit of a chance she might someday be able to tell her side of the story, I NEED to tell mine.

We all make mistakes as parents.  If anyone thinks they don't, they are probably making more mistakes than most.  So, if writing this blog is a mistake I'm making, I'll take that chance.  I'll take the chance that Janey will come back some day and hate me for writing it.  If that happens, I will accept that, because writing it would have helped me help her get to the point where she could express that.  I'll keep writing in the hopes one day Janey can tell me if I did the right thing or not.

Can Janey Read?

Janey's ABA instructor today brought up a topic which is something I wonder about now and then.  Can Janey read?  It seems unlikely.  She doesn't know her letters consistently, at least that she ever lets us know, she doesn't speak in full sentences for the most part, and any testing that has been done on her in terms of IQ or functioning level has put her in the severely intellectually disabled range.  But sometimes, there are tantalizing little hints that she might be able to read, at least some.  

Mr. Ken, the ABA instructor, told me about a program on the iPad Janey was using the other day, one that asked to identify objects both with spoken instructions and words on the screen.  He said the sound was turned down, but Janey was getting the answers right.  As we talked, she jumped on the iPad and went to a program which asked her to pick which of 4 scoops of ice cream was the vanilla scoop, again, without sound, and she picked correctly immediately.  Yesterday, one of her classroom teachers wrote that when they spelled out "C-O-O-K-I-E", Janey understood and said "Do you want a cookie?", meaning, of course, that she wanted a cookie.  And over the past year, we've seen little hints of reading, like Janey knowing the difference between videos that were identical except for the name of the video, like Disney sing-a-longs.

If you read all that, you might be thinking "well, it certainly sounds like she can read at least some.  Why does her mother sound so doubtful?"  I think there's a few reasons.  I am always VERY cautious about thinking Janey can do things that she can't.  I want to be sure before I believe.  That is my nature, I guess.  I'm skeptical.  Also, I know that our minds are primed to remember the good guesses and not the bad ones.  We remember all the times Janey seemed to be reading, and not the times she didn't have a clue what she was seeing.  And Janey is not hugely visual.  I think most of her learning is auditory, which would not make her someone, like a lot of kids with autism, that is cued into written words.  And there's her overall level of functioning.  Reading would be a huge step, like a child who had never sat up suddenly running.

But I know it's possible.  I know reading works in mysterious ways.  I have no idea how I learned to read, at 5.  I didn't learn via phonics.  Suddenly, I knew what the words said.  I still don't know how I read.  I do it automatically, and very, very fast---faster than anyone I know.  Janey might be a look-see reader like me.  She might have skipped steps along the way.  And in some ways, reading might be easier than talking for her.  It leaves out the social step, of having to communicate with another person.  You can read straight into your mind.  That also would make it harder to know for sure if she is reading.  Janey would not be inclined to want to impress us with her skills.  She has no desire to please anyone with what she can do.  If we figure out she can read, it might not actually change much, as I am quite sure she won't do it on command.  After all, she can also talk, but her talking is not really communicative, most of time.

With all that being said, I'd be thrilled if Janey somehow did learn to read.  More than almost anything, I can't imagine life without reading.  I read constantly, and I have since that mysterious day at 5 that I somehow started reading.  Reading is magical.  It's a dream I've had for Janey that I barely could let myself hope for.  And I still don't think it's going to completely come true, but even having it be a distant possibility is wonderful to dream of.

NOT Thinking In Pictures

I read an article in list form yesterday that kind of got me going, one of those "10 things you should know about autistic kids" type things. It was overall pretty well done, but more than twice, it stressed how you have to keep in mind that autistic kids are visual learners. Lately, it seems like I hear that constantly. I'm sure a lot of it comes from Temple Grandin and the whole "Thinking in Pictures". But NOT all kids with autism are visual learners or thinkers. I'm not inside Janey's mind, but I feel very confident in saying she is HEAVILY an auditory thinker and learner.

I base this on several things. One is that typical visual cues for kids with autism just don't work for her. Her teachers and therapists have noticed this too. I have never seen her show the slightest interest in a picture schedule, she has no interest in that picture kind of writing that is often used for kids with special needs, she is not interested in looking through books of pictures---none of that. On the other hand, she is and always has been EXTREMELY oriented to auditory things. This is shown in her fairly extreme echolalia, and her sensitivity to sounds (the "cracking noise") and her love of music. She is actually getting pretty good at following verbal directions, and she is highly tuned into the sounds of talking---if someone sounds angry or happy or annoyed.

In most books I've read about autism, there is a slight mention that a few kids with autism are auditory learners, but I think it's not too common. I think it's both an asset to Janey and a detriment to her learning. It's a detriment because so much of what is developed for kids with autism assumes they will learn visually. I can't see her using a icon kind of speech system, or PECS exchange pictures (that has been tried over and over with her, and everyone agrees it's kind of a bust, as she just likes to crumple the cards, I think to hear the velcro sound!) It's also hurting her ability to learn to know letters, or to someday read. I don't think her mind is set up to recognize shapes or letters very well. However, it's a asset because I think she can talk more than most kids with her level of involvement can. In most ways, from what I can gather, she'd be considered fairly on the low end of the autism spectrum. She has a great deal of trouble learning, she doesn't understand basic concepts like birthdays or "tomorrow", I would no more expect her to answer a question like "What do you do with soap?" than fly to the moon (I saw that question as an early one to teach kids in a book), I am not really sure she understands what family members are...but she talks. She asks for what she wants, she recites all kinds of lines, she even is starting just a little to play around with words. Last night she sang my husband a short parody of "You Are My Sunshine"----"You are my Daddy, my only Daddy..." I can say things like "bring me the phone" or even two step things like "close the fridge and bring me a cup" and if she's in the mood, she does it.

I can understand why most information and teaching is aimed at visual autistic kids. They are certainly the majority. But I think a little of it is that when high-functioning autistic people tell how they think, and they are visual learners, it's pretty hard for them to picture that other autistic people might not be. That's part of autism, after all---it's hard to see things from other people's perspectives. I can't tell you how many people have said that they understand autism a lot more after reading Temple Grandin. And although I admire her greatly, I don't think Janey is anything like her in terms of learning style.

As the blog is called---rarer in girls. And Janey gets another rare attribute in her auditory nature. Oh, well. Nothing like being unique---isn't that what I used to think?