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.

Total Janey Time

Starting this week for a while, Tony has arranged his schedule at work so he can do the afternoon pick-up of Janey.  That is so wonderful it's hard to describe.  The drive back and forth to school has become increasing tough over the years.  I'm into my 14th year making that commute, through busy parts of Boston, with crazy Boston drivers, and lately, more often, a passenger that is disruptive, my Janey.  I feel myself re-energized just knowing I don't have to do that drive twice in a day.

I've decided, when Janey does get home, it's going to be Total Janey Time.  I've always thought one of the most important parts of the day as a parent is when kids first get home from school.  It's one of the reasons I haven't worked outside the home.  Kids need to reconnect after school, even older kids.  They need someone to listen to their stories, someone to take their complaints, someone to feed them.  I've loved being able to be that someone for the boys, and I've realize that has been missing with Janey, mostly because by the time I get home with her, I'm done for.  I often pass her off to Tony and rest a little, and she often gets crazy.  So as a trade-off, now she's going to get my best when she gets home.

What is Total Janey Time?  It's doing things with her that she loves, without trying one bit to make it a teaching time, a molding social skills time, a time for anything but fun and comfort.  It's what I've realized Janey is requesting when she constantly requests to "snuggle on Mama's bed"  And it's what I often don't do.  I seize on time with her to try to either teach her something or work with her on behaviors, or just try to do something with her that's MY thing, not hers, like reading a book or coloring.  Total Janey Time means snuggling her, playing the little games she loves with her, singing to her and just letting her be her.  We play Creep Mouse, we put our faces close together until it looks like we only have one eye, and I say "you only have one eye!" and she laughs, I sing clips of songs I know she loves, like "I went to the animal fair" or "John Jacob Jingleheimerschmit"  I don't try new songs or new games.  I clap her feet together and sing "chicks and ducks and geese better scurry", which I did once when she was about 3 and which she instantly loved for some reason.  We say our little routine "Let's talk about how much I love you!  I love you a..." and she says "million"  I say "I love you more than..." and she says "chickens!"  It makes no sense, but it makes her happy.  It's bonding, it's fun.  It's also about like you'd play with a toddler, and that is why I sometimes resist it.  It seems like it moves nothing forward.  But why shouldn't she have a time each day that's for HER?  She lives in a world she often doesn't understand, a world that I am sure is startling and stressful for her so often.  We all have things we do to center ourselves, to get back to feeling relaxed, and Janey needs that too.

After the first few days of this routine, Janey came in the door, and raced as fast as she could to "Mama's bed", a huge smile on her face, waiting to start the routine.  That was wonderful.  It's a huge reminder that we all need a time and place to feel completely accepted as we are.  It is what I think often gets left out of the day of a child with special needs.  We all want to help them learn, to help them understand and relate to the world around them, but that's a lot of work for them.  They need as much as any of us do to just have downtime.  I'm going to try hard to give that to Janey more consistently.

Weekly Work-ons

The last few weeks, I've been posting on the fridge a list of things for us to work on with Janey. We have a color, number, letter and emotion of the week, a command of the week (for example, this week is "be patient"), a body part of the week and a verb of the week. I'm hoping it gives everyone ideas for something to work on Janey with when they have a minute. I've noticed some good results---I've been saying "be patient!" a lot and Janey is starting to mimic it back appropriately, and she seems to like the body part---this week is "leg". I might add a few items---like an animal of the week, a opposite of the week, etc.

Something I think would be extremely helpful, and something I've searched for without success, is a list of skills and ideas to work on with Janey---something like an autism curriculum. Regular preschool curriculums don't work. They assume kids learn just by absorbing things around them---they do project based learning, books with the concepts to learn mentioned, self directed exploring of toys, etc. Janey needs to be specifically taught things. She isn't going to learn just by picking up things here and there. So I would love lists---here's the words she should understand, here's the animals a 6 year old should know, here's some verbs all kids need to learn. I try to make up my own lists, but it's not easy to do. It's something I might try to do someday, and make a web page about, just by winging it, but I am sure there are people that really know how to do that kind of thing. This is all of course to compliment what she learns at school---I'm not her primary teacher, I'm her mother. I don't want to be her primary teacher---if I did, I would homeschool her. But she needs more practice and reinforcement than typical kids, and I want to do a good job with that.

I think this is an area where all the focus on "autism recovery" and similar concepts takes away from educating the kids right here in front of us with autism. I could find a million pages on the web about how to "cure" Janey, but very few about how to work with the "uncured" Janey. What specifically does she need to learn? How can I best teach her? That is what I want to know.

Freddy's observations

Here's a few emails Freddy sent me, after working with Janey on colors using M&Ms. They show both how Janey is doing and how great a teacher/therapist/brother Freddy is! I've noticed what he found about the red family of colors to be true, and also how Janey doesn't seem to understand how words like "not" modify a sentence.

First of all, Janey asked for M&M's. I gave them to her, but with a task,

In a case with two different colored M&M's, to my surprise, Janey picked the correct M&M about 95% of the time when I asked something along the lines of, "Which one is GREEN?" She seemed to get orange and red mixed up, though.

In a case with three different colored M&M's, Janey picked the correct M&M around 75-80% of the time. Again, colors in the RED family, (red, orange, pink, etc.) caused trouble,

To try something new, I asked her, "Which M&M is NOT blue?"

In a case with two different colored M&M's, she picked the correct M&M below 50% of the time, In other words, she was guessing.

However, in a situation with more than two M&M's, around 80% or so of the time she picked the M%M that I specifically told her not to pick. So she basically ignored the word "not."

After about half an hour, she grew bored and decided to run around speaking to herself, and occasionally asked for crackers from me,
She's definitely making progress with her colors, nonetheless,

In my last email, I forget to mention some findings,

In a case scenario where there was one M&M on the table, and I asked her "What color is this?" the majority of the time she answered correctly. Her strong colors (the ones she answered correctly on her first or second attempted color) were blue, yellow, green, and brown. Everything in the red family (red, orange, etc.) were all referred to as pink unless I told her the correct answer.