Sunday, September 11, 2016

I may not live to see our (AAC) glory, but I will gladly join the fight.

(Originally posted on our Facebook page on 6/9/16. That post, and comments, can be seen here.)

The AAC times, they are a-changing.

I believe this.

I believe that one day SLP students will sit in (a mandatory) AAC class and learn about the history of AAC.

They will learn about prerequisite skills for AAC . . .cognition that is not too low, being attentive and 'motivated to communicate', ability to match symbols to words, solid fine motor skills, minimal to no 'negative behaviors', not too young and not too old.

They will be appropriately shocked by the notion that there were once considered to be prerequisite skills for use of a robust AAC system.

They will learn about the AAC hierarchy . . . first a child must recognize and match photos with labels, then more abstract pictures. First a child must select from a field of 2, then 4, then 6, and so on up the even-numbered-marching ladder. First a child must be able to understand categories and which items belong in each category, because how else will they find breakfast foods? First a child must successfully use no tech, then low tech, then, if mastery is demonstrated, high tech.

They will be appropriately horrified.

They will wring their hands over the children who were victims of this outdated, dangerous approach to AAC. They will somberly reflect upon the children who lived and died and understood and sat in basement classrooms with no way to say anything meaningful, the way that we currently somberly reflect upon the children with disabilities who used to be placed in institutions at birth.

They will have trouble understanding.

They will say "But we know that typical kids learn to speak by saying words and having people respond---of course nonspeakers would learn AAC the same way."

They will say "We immerse typically developing babies in speech, because they can access and produce speech . . . of course we should immerse children with language difficulties in robust AAC, because they can access and produce that type of 'speech.'"

They will be grateful for the tools at their disposal, many of which I probably can't imagine.

They will introduce and implement AAC early and often as part of a first-level treatment approach for nonspeakers. And those nonspeakers will have more rapid increases in their development of communicative intent, their ability to share their thoughts, and their rate of speech development.

I believe this.

I believe that the voices we lend to this fight accelerate the process. I believe that every time we speak publicly about presuming competence, giving all the words, using robust systems early and often, and throwing away the ridiculous hierarchy, we reach new people. And while some of these new people will brush us off as idealistic, some will join the movement. Others will think twice the next time they sit down and pull out a small set of picture cards.

There's a line in the musical Hamilton that says, "I may not live to see our glory, but I will gladly join the fight." I believe that this lines directly up with our place in AAC history.

Presuming competence.

No effing prerequisite skills for robust AAC.

AAC immersion that isn't contingent upon rapid successful participation from the potential AAC user.

I may not live to see our glory, but I will gladly join the fight.

Fight with us.

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 ( 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.

Thursday, July 21, 2016

Movies and a Mission: the Prospector Theater

It is worth noting at the start of this post that this is NOT a sponsored post or a paid advertisement. There is some shameless gushing and praise, and in the world of blogs that seems to often involve compensation or free goods--that is not the case here (this is not a money-making blog, and I don't do sponsored posts). I'm just gushing because this is worth gushing over.

Oh, hello there.

It seems as if it's been 6 months and 6 days since my last blog post (but who's counting). Spring semester started at the end of January, and summer semester started 3 days after spring semester ended. I spent those two semesters working in the clinic (with my very own clients) and, well, I can be a mom and a student clinician, or a mom and a writer, but apparently I cannot be a mom, a student clinician, and a writer. Not yet, anyway :)  (This is where I should mention that I'm very active on the Facebook page, so that's the place to follow along and join in. I'm also going to try to move some of the "best" FB posts/reflections over here in my upcoming time off.)

Speaking of time off: I'm on vacation, folks. Maya's still in school, but the rest of us aren't. And because sometimes family time trumps school time (shh, don't tell) today we pulled Maya out of school to go somewhere more important.

The movies. 


It wasn't the movie (Finding Dory) that made the trip special (although the movie was great, and particularly resonates with families of children with disabilities---read more about that here). What made the trip really special was the theater.

You guys, this theater. The Prospector Theater (in Ridgefield, CT) is "a 501(c)(3) non-profit first-run movie theater that provides meaningful employment to people with disabilities."* That sentence alone is notable---as it is the only non-profit first run theater in the country, and because meaningful employment for people with disabilities is (devastatingly) hard to come by. The US Department of Labor Report from 2014 reported that 80% of adults with disabilities were unemployed.* 

But wait, there's more.

It's gorgeous. It's spotless. It's staffed by a group of friendly, professional people who are genuinely glad to see you and are working to ensure you have a good experience. The environment is warm, welcoming, and flexible. Movies aren't easy for Maya----she needs sensory supports, she needs movement, she needs flexibility. 

I can't remember how we first heard about the Prospector Theater, but I know that it crossed my Facebook feed around a year and a half ago (it has only been in existence since 2014). Last summer, when we thought the kids were ready for their first movie theater experience, I knew exactly where we were going to go---we headed to the Prospector Theater to see Inside Out. The experience was wonderful, and I knew that when we had the time for movie #2 (and something really captivating was playing, because movies can be a bit of work for Maya) we would return. And I knew that this time I would take pictures and write about it (what I didn't know is that we would haphazardly end up meeting the founder of the theater and getting a little tour). Which brings us to today. 

We were pretty excited.
image is a white wooden sign which reads "ridgefield library (forward arrow)Prospector Theater (right arrow)" posted in green grass

image is Will and Maya standing outside the entrance to the theater

We arrived early for the first movie of the day, and were literally the only non-employees there (more on that later). It gave us time to try out the bean bag chairs in the theater (which I totally would have stayed in, but the kids wanted to move back to the seats for the movie) and re-explore how beautiful (and meticulously clean) the theater is.

The theater our movie was being shown in:
image shows Will and Maya sitting in bean bags with the stadium seating section of the theater behind them

There were stars on the ceiling.
 image shows Will and Maya laughing in the bean bags, the blue lighting and stars on the ceiling is visible above them

The lobby.
 image shows an area of the lobby with fancy wood risers and different blocks to sit on. The bright pink walls of the mezzanine can be seen in the rear.

 This was inside the bathroom. Inside! It's so pretty.
 images shows Maya and I standing before a full length mirror, with white sparkly walls and dressing-room-style light bulbs lining the mirror

They have a bar. A coffee-but-also-wine-and-good-beer-on-tap bar.
image shows the entrance to the coffee and wine/beer bar, with small sign outside reading that "Beer & Wine are now served at Heads Up Cafe". The wall is exposed brick, and there is a spiral rack displaying t-shirts for sale outside of the entrance.

We were literally the only ones there to see Finding Dory at 10:45. An accidental private showing. We ate popcorn, we had a wrapping blanket and a few other sensory tricks ready. The usher in charge of our theater was courteous and helpful, and as the last scene faded away 3 employees appeared to assist with clean-up, thank us for coming, and bid us farewell. 

And we were just about to leave when I noticed that the founder of the theater was there. I know a bit of the backstory from following the theater on social media and checking out their website (more on that below)---the building had once been a theater, then a bank, then was scheduled for demolition. Valerie Jensen ended up taking over the building and having it restored/rebuilt into a stunning, fully accessible* 4-theater movie theater.  *really fully accessible: every theater and the projection booth are fully accessible, and all theaters support both closed captioned glasses that provide subtitles and high-quality headphones that stream dialogue and provide descriptions of scenery, etc.  Val, sitting with her computer in the lobby, was hard to miss---both because she is an active presence on the theater's Facebook page and because she has fluorescent pink hair.  We were half out the door (literally, Dave and Will were already walking to the car) when I turned back to say hi to her and compliment the great work and mission of the theater.

Long story short, we were there for another half hour. (The guys came back in from the parking lot.)

Val chatted with us, small talk at first, then more in depth. We talked about teaching (she is a former teacher as well) and about the theater.  She told us about seeing the need for meaningful employment opportunities for people with disabilities and responding to that need for jobs. The theater has 110 employees (known as Prospects) and receives thousands of applications. To create maximum job opportunities, the Prospects run every aspect of the theater--from concession stand to landscaping. She described the running of the theater as a model of inefficiency---everything takes a little more work than necessary to ensure the necessity of more job opportunities. 

We talked to her about AAC and Maya showed her Mini. Val excitedly led us to a mosaic on the second floor that she had created as a communication/conversational piece. Embedded among the colorful pieces are a variety of images and objects---and the purpose of the piece is to serve as a communication starter. She talked about how communication pressure could be lifted when two people approached the piece together---and that by simply following the lead of whatever a person gravitated toward or commented on, a communication partner could easily get to know someone better and find common interests.

One side of the piece
 image is of a brightly colored (blues and greens, mostly) mosaic that is the size and shape of a  fireplace

A close up: I spy Santa Claus
 image is a close-up section of the mosaic, with a picture of Santa's face in the middle and the words "yes I can" spelled out in letter tiles

There's Val's hot pink car
image is a close-up of another section of the mosaic, featuring a bright pink matchbox-style car

So, art as a communication support. How brilliant is that?

Eventually it was time to leave (we had lunch at a great spot within walking distance, fyi). Before we left we asked Val what the theater needed most---and the answer surprised us: it needs more patrons and more publicity. More folks walking through the door to see movies. I imagine that more special events, more birthday (and other) parties, more people stopping by to get coffee or buy a t-shirt would also be very welcome. BUT WAIT---if you're too far away to stop by regularly (or ever), you can still support their mission.  And it's easy to do!

First, follow the Prospector Theater on social media. Even if you don't live close to the theater, someone that you know might live close by. Or someone that you know may like or share the information with someone that they know who lives nearby. So, click here to like their Facebook page, and then go click "like" on a few recent posts. When you see them post stuff, like it (it doesn't matter if you like whatever movie is being promoted, you're clicking like to support their mission . . . although honestly they show all of the best current movies. Plus they're showing Goonies and ET this summer. Goonies and ET, people.)  That should get the FB algorithm to bump it onto a few of your friend's feeds, and to show you some of their upcoming posts. You can also find them on Twitter (here), and Instagram (here), and probably on other social media spots that I'm too old/out-of-the-loop enough to know about (what's a "snapchat"?).   

Next, share the heck out of this.Share this post, or the theater's website.  More people should know about this place, and there should be more places like this.

Also, if you're within a reasonable distance, go see some movies. As I mentioned, it's about an hour's drive for us---but a pretty drive. In the fall it must be stunning. The theaters are beautiful and underpopulated, and there are multiple meal options within a block or two. Take a drive and make a day/night of it. (Or, if you're not within driving distance, do you know someone who is? Be a stellar friend and buy them a gift card.)

Finally, the Prospector can host events---they have private party space. Do you know businesses looking for unique event space? Or people looking for a cool spot to host something? Or a unique birthday party idea? Here it is.

We can't wait to go back.

Maya, the flier she was reading about upcoming events, and Val
image is Maya standing next to Val, who is kneeling. They are jointly holding a flier with this week's movie offerings. The wooden risers of the lobby are behind them.

Again, not sponsored in any way--no goods or services have been provided to me. We (happily) bought tickets, concessions, and a t-shirt, and we had never spoken to anyone at the theater prior to today. 

*description and statistic taken from the theater's website and promotional flier

Thursday, January 14, 2016

The Wins Between Our Losses

You know when times are kind of challenging, but you’re fighting the good fight, and then some things start to go right and you win a few small victories, and you feel pretty good about yourself? When you see memes like this:


 . . . and think “Yeah, that’s right! I’m not giving up, I’m not discouraged, and I’m playing the hell out of my hand right now!”

This post is not for you.

(not right now, anyway)

Go enjoy your victories.  Celebrate them, roll around in them, delight in the fact that your skill and cleverness in playing your hand has pulled the chips in your direction. You are fantastic! You are working hard and it’s paying off! You deserve the breaks you’re getting!

(But maybe bookmark this for later. Not that I’m suggesting that this lucky streak is bound to end or anything, but, well, you know, life.)

The rest of you, the ones who see those memes right now and roll your eyes, or mutter to yourself, or narrowly resist the urge to click this window closed and quit reading this. . . this is for you.

Let’s talk about poker.

Yes, poker. The card game. Texas Hold’em, to be specific. For those reading who may not be card players, I offer a (very simple) overview to the game: Each player is dealt two cards (which are kept secret from the other players) and five communal cards are dealt face up to the table (in baby steps: 3 first, then 1, then the final card). Each player makes the best 5 card poker hand that they can (they must use their two “pocket” cards, and can use any three of the shared cards on the table). So if we consider this image below, the person seated across the table has pocket Ace-King, and their final hand would be two pairs, kings and tens (ace, king of spades, king of diamonds, ten of spades, ten of clubs). The player seated closer to use would have a full house, the winning hand (king-clubs, king-hearts, king-diamonds, ten-spades, ten-clubs). Got it? 

Poker, a game that requires skill and intelligence, but also incorporates chance, is a pretty solid parallel for many aspects of life. Almost all of the aspects, really, if you’re willing to think outside the box and really stretch your metaphor-making muscles. I’m going to narrow my view to special needs/AAC parenting, but if you think a bit wider the points that I’m about to make can apply pretty broadly.

When you’re new to the world of AAC, you are a new poker player. You have found yourself with a seat in an upcoming tournament, and there’s no backing out. You’ve never played before . . . actually, until yesterday you had never even heard of the game. So now what?

You read and research. You watch YouTube videos of other players, read poker blogs, and lurk in online forums where strategy and game play are discussed and analyzed. You learn the odds, and how to play in a way that will optimize the likelihood of your success.

And then the day of the tournament arrives, and it’s time to play. You’ve put in your time researching, and you know the best practices of playing poker. You have learned from the work of some of the top players in the field, and you are ready to get in the game. When the tournament director calls “Shuffle up and deal!” you are nervous, but confident.

You play conservatively at first. You fold a few hands, kind of hanging back. You’re in the game, but you’re starting slow, watching and learning. At the start of the next hand you check your pocket cards and see a pair of aces (it doesn’t get better than that, folks). You have the cards that you need and you know how you should play them. You bet smartly. Other players fold, and you are left facing only one opponent, who has pushed all in (bet all of her chips). You both turn over your cards and see this:

You have a pair of aces, your opponent has ace-ten. The likelihood of you winning this hand is 92%.  It’s time for the communal cards to be dealt. First the flop:

Now you have 3 aces, while your opponent only has a pair of aces. The likelihood of you winning this hand is 98%. The next card is dealt:

It's still 3 aces vs. a pair of aces. The likelihood of you winning is 91%. Final card:

You end the game with 3 aces while your opponent has beat the (formerly staggering) odds and has a straight (ten, jack, queen, king, ace).

You lose.

You had the right cards, you played smartly and boldly, you made the same correct decisions that anyone in your position would have made, and you lost anyway. Because, in poker, sometimes you lose anyway. 

It’s a game in which a poor hand can, indeed, be played well and triumph in the end.  But it’s also a game in which you can play your heart out---skillfully and cleverly and artfully---and then get beat. Beat from behind, beat by a hand that was overwhelmingly favored to lose, beat badly.

In fact, this is called a bad beat. A bad beat is a situation in which you have the cards that mathematically should have won, but they didn’t. It’s almost like the term a “bad break” but also fundamentally different : a bad break is something that you haven’t worked for and that occurs totally by chance. For example, if I know that Maya needs an AAC evaluation and I’m hoping that we are assigned Sarah (who is fantastic) but we are assigned Britney (who is awful), that’s a bad break. But if, during the evaluation, I present Britney with 40 pages of research about why I think a certain system would be most appropriate, and I have letters from doctors and therapists to support my ask, and Maya can demonstrate competency on the desired system, but Britney chooses to ignore this information and recommend something different? That’s a bad beat. I worked shrewdly and tenaciously to make all of the right moves, and I should have been successful, and I got beat. A bad break feels unfortunate, a bad beat feels unfair. 

Foot-stompingly, heart-breakingly, tears-of-frustration unfair. Upend the table, send the chips skittering across the floor, and quit the game unfair.

So then what? What happens after a bad beat?

Or, to take it over to AAC, what happens when you are pretty certain that you have the “right” AAC system and the “right” implementation strategies, and you’re not having success? What happens when you are targeting motivating and meaningful vocabulary, when you are modeling skillfully and often, when you are keeping things light and fun and positive, and your child seems uninterested or unable to participate? What happens when you see and hear other families with the same materials that you have, making the same implementation decisions that you are making, and they are sharing win after win, while you aren’t winning at all? 

You keep playing.

If you need to, you sit out a hand. If you have trouble not taking it personally (because you’re new to the game or because you’ve had a string of bad beats recently and it’s just. so. hard.) then you take a walk and have a cry or punch a wall or something. And then you sit back down and ante up. And you play.

And before I talk about why you keep playing, and how to recenter your mindset a bit, I’ll let you in on a secret. That bad beat hand that I described above, the one with the pocket aces? That really happened (mostly, anyway-I simplified the intro a bit, but the cards are real). Watch the whole thing unfold below:

I’ve watched this video an embarrassing number of times. At first I just enjoyed the shock and chaos after that king landed. Then I watched again to see Annie Duke’s celebration and apologies (if only life’s bad beats came with a “you don’t deserve that” acknowledgement and an apology). And then, I watched again, several times, and focused on Paul Wasicka. The loser. The victim of a big, bad beat. After the crowd quiets a little the camera swings over to him, sitting and smiling, and he speaks. Did you catch what he said?

“It’s not over yet.”

It’s not over yet comes easily to some people, myself included. I’m generally stubborn and sure-footed, more likely to stand my ground and fight back than to retreat and lick my wounds. But his demeanor, the zen-ish, probably-a-little-shaken-but-also-doing-just-fine smile . . .that does not come easily. When I see someone try something that I’ve suggested, to be met with greater success than I myself am having, little seeds of jealously, anxiety, self-doubt, and frustration sprout and take root.  If I don’t complain aloud, I certainly complain internally.  (Shockingly, this complaining does nothing to improve my situation.)

To recenter and move forward in the most clear-headed, non-emotional way possible, let’s consider this tag-team quote, which comes from Howard Lederer and Annie Duke (siblings and professional poker players). 

First, let’s take a look at that “If” because, in our shoes,  it’s an important word. When recovering from a bad beat, it makes sense to analyze your play. Step back and self-evaluate: are you really applying best practices? Is there anything that you could have done differently? After your self-analysis, reach out for help (or just for confirmation). Call on someone who is more experienced and has a generally good degree of success, and ask for their input. Are you using the correct materials, and the correct approach? Is there anything that you need to adjust?  Walk your way around that “if” and examine it from every angle until you’re sure enough to stomp it down. 

Now you’re left with “You’re making good decisions.” Yes. You are making good decisions. You suspected it to be true, and any doubts that may have sprouted after the bad beat have been stomped back down with expert confirmation (or you’ve made appropriate revisions to optimize the correctness of your decisions). In the game of poker, some things are left to chance. In AAC implementation there is a large amount chance, due to about a hundred variables that are just not in our control. The oscillating health of the AAC users that we are supporting, fatigue, sensory and attention challenges, access challenges, sporadic interest, environmental issues, lack of consistent support at school, and other things that we probably don't even perceive . . . we can work our best to understand the elements at play and seek to minimize the chance associated with these factors, but we cannot control these things. What we can control is the decisions that we personally make about implementation, advocacy, and support. And although you may not have much to show for it right now, you are making winning decisions. The best thing for you to do is keep playing. Which brings us to this:

We are playing the long game, folks. In poker, in life, in advocating for our children, in implementing an AAC system and supporting autonomous communication . . . the game is long. We cannot expect that each day (week, month, year) will feel victorious. I would guess that poker players who expect to win every hand are more likely to be shaken by a loss, while those who take their seats expecting to play several winning and several losing hands will have an easier time brushing one off and moving forward. In the video clip above, Paul Wasicka actually says “It’s not over” twice: once before the flop, when he had a 92% chance of winning the hand . . . and again after he lost. He’s playing the long game. He knows that the loss of this hand, while currently crushing, won’t matter at all if he’s able to win the overall game.

AAC implementation is a long, long game. After system selection, acquisition, and initial programming come exposure, motivation, modeling, enticing, teaching, supporting, modifying, and more programming. There is no shortage of language goals, either, with expanding vocabulary, expanding utterance length, targeting the many functions of speech, moving up the hierarchy of grammar, etc. There is always another thing-to-be-considered, there is always another hand to play.  And progress . . . it’s often inconsistent, slow, or unpredictable. We spent years (literally, years) modeling spontaneous, complete sentences without seeing similar production from Maya, until one Tuesday night, when suddenly she was creating spontaneous complete sentences. On that night, as I listened in awe, I no longer cared one bit about the three years of not hearing long, spontaneous sentences. I didn’t lament the time and effort that I had put in, or the months that we suffered the repeated bad beat of zero “progress” despite smart decisions and concerted effort. That night we won an important hand and collected a huge pot (the “pot” is the sum of the chips bet during a hand.)

Let’s talk about the pot for a moment.

A poker game will be comprised of many hands and the size of the pot will vary each hand (depending on how many people play the hand and how much they choose to bet). When a player is deciding to play a hand, they ideally create a mental ratio by comparing the pot size to the size of the bet that they need to stay in the game (this is called pot odds). (This is a little mathy, but stick with me, I’ll rephrase.) Generally speaking, if your odds of winning the hand are greater than or equal to the pot odds, you should stay in the game. Here’s a simple explanation from my statistician friend:

If you have a 20% of winning your current hand, you would expect to make your hand 20% of the time, or one in 5 hands. If the pot odds don't suggest you would recoup your money in 5 hands, you wouldn't consider it worth the bet.
In plain, non-numerical language, Annie Duke explains it like this, “The amount of the pot determines how sure you have to be that your hand is good.” As the size of the potential bounty increases, compared to a relatively small amount to risk, the more mathematically encouraged you are to play. Because you are paying in so little and standing to win so much, you can win only very occasionally and still break even or move ahead. For example, if it costs $10 to stay in a hand and you stand to win $100 in the pot, you could lose nine consecutive hands (-$90), win the tenth (+$90: the $100 pot minus your $10 bet), and break even. You could lose 90% of the time in that scenario and still be in decent shape. Ninety percent! That means that losing anything less than 90% of the time will have you actually increasing your chip pool over the course of the long game, slowly but surely.  If it doesn’t cost much to stay in the game and the pot is very large, your hand doesn’t have to be all that strong for it to make sense to play.

The wins between our losses just have to be big enough to keep us moving forward.

(And we have to stay in the game and believe that a win will come, eventually.)

In considering AAC implementation, the pots tied to each hand are pretty damn large.

Spontaneous, autonomous communication. Speaking to anyone, anywhere, about anything. Making jokes, being bossy, tattling, directing, asking questions, commanding, requesting, teasing, sharing feelings, telling stories, self-advocating, having access to all of the words. If you were silenced tomorrow, how much would it be worth to you to regain your ability to communicate? The pot is huge.

The bet isn’t that big. It’s showing up, modeling, continuing to learn about AAC. It’s practicing our implementation and advocating for more people in our children’s lives to use AAC with them. It’s teaching our teachers and therapists about total communication. It’s tiring. But it’s not a large bet, compared to what our children stand to win. (Yes, our children.) Because as personal as this feels, we’re not really the ones who truly have chips on the line.

We’re all playing as proxies. I sit at the table and play for Maya, because she’s not yet able to play for herself. I’ve learned the game to play in her place, until she might be able to take the seat herself, to direct her own AAC use and the support that she needs to continue increasing her skills and fluency. While I am emotionally tied to her winnings and losses, I have nothing on the line. I’m playing with her chips, trying to manage them as best I can. It’s a huge responsibility. I am doubly crushed by bad beats---once, selfishly, in a “but I’m doing everything that I’m supposed to do and this isn’t fair!” way, and then again in an “I’m sorry, Maya, I’m trying my best and we’re not winning right now.”

Not right now.

Not yet.

But maybe in this next hand.

Shuffle up and deal.

Related Links
Dealing with Doubt: Radiolab podcast segment that introduced me to the concepts of bad beats and pot odds.
Big Think interview with Annie Duke