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.

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.