Tuesday, August 23, 2016

The book formerly known as "Curious George Gets a Talker"

Welcome, friends, to the former home of the book "Curious George Gets a Talker." 

(If you're brand new and don't know what I'm referring to, it was a super neat PowerPoint book that I wrote about Curious George using a communication device, and then I cut up photocopies of our George books with my kids and we put talkers in them. It was pretty neat :) )

If this disappearance is coming as a shock, let me explain.

When I made the book, it was for my kids (my daughter, Maya, who uses a communication device by necessity, and her little brother, Will, who uses a communication device because we are an AAC family). We had fun doing it and they *loved* the finished product. Per usual, when I create resource-y things, I put it up here to share with the intent of supporting other AAC users. AAC folks loved it and all was good. It was translated into multiple languages! I received touching emails with photos and videos of their kids reacting to it! Until . . .

The next day someone asked about copyright. Knowing nothing of copyright stuff, I had no idea whether it was an issue. I wasn't selling anything, I saw oodles of homemade character crafts elsewhere online (ahem, pinterest), and other friends chimed in citing fair use law, so I thought it was probably fine. But, being a fine upstanding non-thief-y type of person, I emailed the Curious George people (actually the Houghton Mifflin Harcourt people) to self-report the usage. I explained the project, sent them the book, and asked whether it was permissible to leave in place or whether it should be removed. (This is also why I didn't repost the link on Facebook or share the translated versions---I thought it was wiser to wait to hear back from HMH.) After a few days I got a reply that my email had been passed to a different department, and I didn't hear anything else until today.

(Side note: I can't help but wonder how many emails they get self-reporting potential copyright infringement. Not many, I would guess. Ha.)

Earlier this evening I received a very polite email from the HMH folks saying that, while they appreciated the effort to provide resources to the disability community, there are "strict editorial standards for creating new stories featuring the character," and they requested that I pull the file down. 

And so . . . 


But wait, there's more.

While HMH requested the removal of the booklet due to the copyright, they were "inspired by [our] story" and as a gesture of appreciation they have offered to make a donation in Maya's name of 100 HMH children's books to a nonprofit of our choosing. (They also are sending us a small gift basket of books for Will and Maya, which is lovely.)

That's pretty cool. Considering that not only did they have no obligation to be charitable, they actually could have been righteously indignant, it's very generous.

So the book isn't here anymore. I'm not really bummed about it, though. It reached some kids (most importantly to me, my own). The books that will be donated will reach some more kids. My kids and I had a blast making it. If only I could draw, we could have made it with other characters to begin with . . . which brings me to the next point:

While the character images in my book belonged to HMH, the story was mine. It was a pretty good story from an AAC perspective: there was modeling, multiple communicative functions, multiple communication partners, multiple communicative environments, etc. Curious George, while beloved and adorable and well-known, is not essential for the story to work. The main character could really be any animal (I'm particular to Parker the poodle, but Sara the squirrel or Harry the hamster or Carl the cat or really anyone could work).

But I can't draw. 

And so if you, dear reader, happen to be an illustrator, or happen to know an illustrator, or just like to draw (simple, emotive, child-friendly) characters in your spare time . . . well, get in touch (uncommonfeedback@gmail.com). If anyone can make it work, I'd be happy to attach the story to someone new.  

Our kids need more AAC stories.  (And I can't help draw them, but I can happily help with the stories----so if any book folks out there want to run with this, well . . . it's a good idea. And I'm happy to help.)


(Totally unrelated side note: this is the first week of my new semester, and posts have been pretty thin here since I started back in grad school. If you want to keep up with us, our Facebook page is really the place to go!)

Monday, August 1, 2016

21 Days of AAC Challenge: 2016

New, 2016-style Introduction:
We are freshly back from AAC family camp (which I will definitely blog about at some point, but if you'd like to see some snippets from camp you can see them on our FB page: here, here, here, and here). It's that last post that's leaving me hungry to do more, to be a better support for my AAC-using daughter, particularly as she often wants to use her (mostly unintelligible to strangers) speech and reject her device. I'm scared that she's losing her skills (well, because she is---more on that here) and I'm scared of the implications for her future if she doesn't maintain/increase her AAC fluency. 

And so, friends, it's AAC challenge time!

And this year, there's a friendly new (free) printable.  First, check out the details of the AAC modeling challenge below (re-run from last year). At the bottom you'll find the oh-so-easy printable calendar. *THIS CALENDAR IS NOT MANDATORY.* Nothing is mandatory---this is all made-up, remember? But for those who like the self-satisfaction that comes with crossing off another day, or who enjoy the data collection of jotting a (very) few daily notes, this new addition is for you. 

And now, the details: 


If you are a member of an AAC family, you have likely heard that the most important thing that you can do (after providing your child with a robust ready-to-support-language system and presuming competence) is model. Modeling (also known as aided language stimulation, aided language input, and ALgS) is when you use your child's AAC system to communicate, with several variations:

(words spoken via AAC are in bold)

  • Use your child's system to highlight certain words as you also speak: "We are having fun." 
  • Use your child's system to build whole phrases/sentences instead of speaking. "Your turn."
  • Use a separate device with the same language file (this works if you have 2 iPads and your child is using a communication app) as your own AAC device. (This is also called dual device modeling). (Same examples as above, just with your own talker.)
Of course, you could also highlight words without speaking them, or build whole phrases/sentences while speaking them, or use a combination of single and dual device modeling, or probably a bunch of other possible modeling plans that I haven't listed. 

(Is this starting to feel complicated?)

And then there's the question of which words/phrases to model. There's a lot of emphasis on core words and core vocabulary (core words = the words that make up the large majority of a person's vocabulary; including versatile, simple words like eat, push, go, stop, in, up, this, it) . . . but we also know that sometimes the stuff that gets our kids most interested in talking are the fringe words (names of tv characters, favorite toys, words like fart, poop, gross). And then there may be essential words/phrases/topics that we know are important for our child to start incorporating (communication repair phrases like That's not what I said, social interaction phrases like What's your name, questions, words to describe pain/seizures/medical conditions, introduction strategies, etc.)  Not to mention the wealth of questions that immediately arise as soon as you try to model:

For beginners:
  • Wait, which words should I highlight? 
  • Should I only model present tense verbs or should I use all of the tenses?
  • Do I need to pick a set of words and only model those 5-10 words until my child is using them?
  • Should I model one word at a time or more than one? When should I ever model full sentences?
  • What if my child isn't paying attention when I'm trying to model? Should I wait? Make him/her watch? Quit and try again later? Keep going?
For intermediate/advanced:
  • My child usually knows where words are better than I do, am I really adding much by continuing to model?
  • How can I balance between hitting new language targets while also remaining fluid and flexible in conversation (rather than feeling like a lesson)?
  • When should I recast/correct my child's production (eg. using AAC to restate their sentence while correcting verb tense, or adding articles, etc), and when should I ignore the errors?

It can be overwhelming.

Depending on your degree of over-thinking-ness, it can be really overwhelming. (My over-thinking-ness degree is high, for the record).

And yet, undeniably, modeling is essential. 

Modeling provides children with accessible language input (input in a language that they will be able to access and then also use, whereas they may not be able to attempt to use the speech that they are hearing constantly). Children are immersed in speech from birth, but AAC users receive only a tiny fraction of that accessible language modeling in their AAC language. While many families can count on AAC to be modeled during weekly speech therapy sessions, consider these thoughts from Jane Korsten:

The typically developing child will have been exposed to oral language for approximately 4,380 waking hours by the time he begins speaking at about 18 months of age. 
If someone is using a different symbol set and only has exposure to it two times a week, for 20 – 30 minutes each, it will take the alternate symbol user 84 years to have the same experience with his symbols that the typically developing child has with the spoken word in 18 months!!! 
The typically developing child will demonstrate language competency around 9 – 12 years of age having been immersed in and practicing oral language for approximately 36,500 waking hours. For 9 – 12 years that child has been using and receiving corrective feedback while practicing with the spoken word. 
At twice a week, 20 – 30 minutes each time, it will take the alternate symbol user 701 years to have the same experience.

If we are to make any sort of dent in closing that gap, AAC modeling needs to become something that we do at home (and in the grocery store, and while out on a walk, and in the doctor's office, and . . . you get the idea)---for AAC beginners, of course, but even for our intermediate/advanced users. 

Here are some things that are great about modeling:
  • It provides children with an increased amount of accessible language input (as mentioned above)
  • Hands-on modeling time sneakily forces the modelers to become more familiar with the vocabulary placement and to increase their fluency with the system
  • Modeling will undoubtedly lead to programming/opening more words in the system, as you will notice things that you want to say but can't, because words are missing
  • Using AAC will validate your child's system, in a subtle-but-real way that says I think this is such a great way of communicating that I want to use it, too!

Things that are challenging about modeling (aka "reasons that maybe sometimes I don't want to model") and why those are also great:
  • My child wanders away when I am modeling and then the whole thing seems pointless. Keep modeling anyway. Children who use AAC need to be determined to get their point across: AAC is slow, sometimes hard to hear, sometimes awkward or cumbersome. Our kids will have listeners who wander away----they need to see that it's worth sticking it out to communicate your thoughts. You're not just modeling the words, you're modeling what it looks like to use a communication system. You're modeling that you are comfortable using AAC, that you value it and don't quit just because listeners are indifferent. Stick it out. 
  • My child finds the words much faster than I do. I feel awkward searching for so long between each word.  You are not only modeling words, you are modeling what to do when you are looking for a word that you don't know (I guarantee that our kids have words in their heads that they don't attempt to say with their devices simply because the words aren't programmed in or they don't know where to find them).  Use this opportunity to say things like "Huh, I want to say enormous but I don't know where that is . . . do you have enormous in here? . . . let's take a look" while you model how to use the search feature. You can model how to use a synonym if the exact word isn't in there, or how to use a button like "I don't have the word that I want" or "I need a new word." You are modeling how to fight to get your message across, how to not quit because it is hard. (Also, if you ask your child for help finding words they may love being the expert :) )
  • I feel awkward using the device while out-and-about. Of course, I want my child to use his/her system anywhere, but I am a speaking adult, and I feel strange wearing an iPad and using it to talk in line at Starbucks. I get it. I want Maya to feel empowered and proud and awesome when she wears and uses her talker, and yet I sometimes feel sheepish doing the same. I'm not a big fan of drawing extra attention to myself in public, and holding an electronic device and tapping on it with your kids is going to solicit some looks (and maybe comments too, about how we are all addicted to devices now). But we are awesome when we model in public. Maya has shown me, time and again, that she is generally resistant to using the talker in new places (so much to see and do that it's hard to care enough about communicating to slow down and do it). I need to model that it's worth taking the time to communicate everywhere---that we can pause on our walk to comment on something we see, that I can stop to ask a question, that it's ok (more than ok!) to take the time to use the device whenever, wherever.
  • My child sometimes pushes my hands away when I try to use his/her talker. This one, actually, is the one reason that I would back off (temporarily) on the modeling. If you don't have a second device available for modeling and your child is showing this type of possessiveness over his device, I would honor it and simply try again later. I would ask permission ("can I use your talker to say something?") and/or choose a time when he isn't much interested in using it. 

Despite knowing how important modeling is, sometimes I drop the ball. ("Sometimes" has sometimes been for a while, for the record.) Sometimes it's hard to stay motivated. Sometimes life gets in the way, or I forget, or it starts to seem not that important. Sometimes we all need a jumpstart.

So here's my proposal: For the next 21 days, join me in committing to modeling with renewed vigor and enthusiasm. Do not worry about whether you are doing it "right", just do it. I will post nightly threads on our Facebook page that provide an example of some type of modeling that I did that day (because sometimes simply seeing what someone else is doing is enough to have you thinking "Oh, that's it? I can do that."). I (strongly) encourage you all to jump in---post to the daily thread, check in, share pictures or stories from your day of modeling. Ask questions. Share ideas/activities.  Just keep going.

21 Days of AAC Challenge Frequently Asked Questions*:
-Why 21 days?
Once upon a time, I learned that it takes 21 days of doing something (like exercising or waking up early) to form a habit. When the idea of this AAC challenge sprang into my head, along with it came the 21 day time frame---perfect for forming the habit of daily modeling, I thought. Then I googled and learned that the whole 21-days-to-form-a-habit thing is an odd, non-scientific myth . . . but I think it's still a great amount of time for a challenge, so I'm sticking with it. 

-How long do I need to model for it to count? 10 minutes? 30?
This is a made up challenge without points or prizes. You earn your "day" of modeling by actively deciding to model and jumping in. Extra imaginary points will be assigned if you model throughout the day. (I think this is the sort of thing where success compels you to do it more---I have found that making myself model actually makes me want to do it more.)

-I'm kind of new to modeling and don't know where to even start--help?
Here are a few great getting started resources:

But remember, the whole point of this is just to get more comfortable with modeling, and to form the modeling habit----it doesn't have to be structured or magical, it just has to happen.

-My kid isn't a beginner anymore---is my modeling really that useful?
Yes. You are modeling how to be an active, determined AAC user in a fast-paced world. You can pick higher-level language targets (using comparative and superlative adjectives, using contractions, increasing the number of questions asked, taking a larger number of conversational turns, starting to use and introduction strategy, modeling sentences with active verbs and then their counterparts with passive verbs, etc etc etc) to model. 

-This is a great idea, but  . . . (we're about to go on vacation//it's the first week of school//we are throwing a family barbecue this weekend//insert other life-gets-in-the-way excuse here) . . . maybe I could start next week instead?
No, you have to start now. 

Ok, actually I am just some lady on the internet and I can't hold you accountable for anything . . . but I think you should start now. Life is busy, and it will always get in the way. Particularly for our AAC users, who have to stop, form an idea, find the words to say the idea (often dealing with motor challenges while doing that) and then communicate it. That's a struggle. It's not fair for us to think "gah, it's too hard to start today" while our kids have to do it everyday. Suck it up, buttercup.

Join me, guys. This is going to be really fun! 

I'll share a few bonus ideas (like, "If you're looking for something to focus on today, try incorporating more adjectives" or something) along the way, in case you're struggling to come up with fun new stuff. This is going to be Facebook based (rather than blog posts) because it's still too painful to type a lot (my arm is on fire right now), and FB allows for it to be more interactive---I want to see your ideas and pictures and stories, too. At the end of the 21 days maybe I'll try to compile it into one giant blog post so that it will be easier to find. 

Happy modeling!

*"frequently asked questions" = "questions that I just made up right now"

Ok, here's the calendar. It's a very simple August calendar. Each day there is are two faces---circle the smiley if you modeled, circle the sad face if you didn't (but seriously, you can do all smileys. It's only 21 days). There is also a spot for "notes"----jot down anything (words added, new things said, highlights, lowlights, etc) or nothing. The printable PDF is here. 

image is a printable calendar for tracking modeling

Join us. Chime in on Facebook. Share. Motivate each other. Collaborate and problem solve together. 

AAC families, unite!

Image is Dave and Maya, sitting on a low grey brick wall. 
Dave is modeling on a device while Maya, who is wearing Mini, is looking on.