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Matt: Hi. Welcome back to Mollynook Podcasts. I’m your host, Matt Wilkinson. In this episode, I’m joined by Christine Holyfield, an assistant professor at the University of Arkansas. This episode is loosely the second part of my focus on how AAC, Augmentative and Alternative Communication, can be used and integrated into live theatrical performance. I highly encourage anyone who hasn’t already to listen to the episode prior to this one, where Tanika Peart broke down the fundamentals of AAC and some of the ways she has incorporated AAC into presentation and performance. In this episode, Dr. Holyfield and I further discussed performance and the arts in relation to AAC, as well as some of her research and how AAC can be made even more effective, useful, and accessible. As always, thanks for listening (reading).

Matt: Before we do anything, I’d love for you to introduce yourself. Maybe, title and where you’re working right now? And some of the research you might be doing?

Christine: Sure. My name is Christine Holyfield, I’m an assistant professor at the University of Arkansas in communication sciences and disorders, and I study augmentative and alternative communication for individuals with intellectual and developmental disabilities, mostly, who are school age, adolescent, or adults. And a lot of my research is focused on the development and evaluation of different technological features and instructional strategies that can enhance positive outcomes that result from augmented and alternative communication intervention.

Matt: That’s super cool— and we’re going to circle back around to this— really quickly, though, I googled you yesterday, uh, in preparation for this— did you just get— did you just publish something in ASHA?

Christine: I did. In the American Journal of Speech Language Pathology.

Matt: That’s really exciting.

Christine: Yeah. So, um, there’s a lot of different facets to AAC— if I may call it AAC instead of augmentative and alternative communication—

Matt: Yeah.

Christine: So, there’s a lot of different facets to AAC technology, and we’ve had so many great researchers over the years who have started to, uh, evaluate AAC technology and, just, have found that, look, if we give people who don’t have functional speech access to an alternative mode of communication… turns out that’s pretty good! For their communication, their language, their participation in the world, and we’ve been building— ‘we,’  —other people have been building the evidence and, um, I personally, at this point in my research, I’m interested in starting to, kind of, compare different routes that AAC technology can take to see which ones might be optimal for which people. And so one of those things is ‘representation’. And ‘representation’ is, you know, when— when people who use speech use speech, they represent a concept with the spoken word. And if someone who uses AAC uses speech, if it has voice output, they do that too. But to select that voice output, there needs to be some representation to show them where to select for that concept to be spoken, and so a lot of representation for people with developmental disabilities has been picture symbols, like line drawing, kind of cartoon looking things. People, um, in the education world are probably familiar with ‘Boardmaker,’ for instance. And the idea was one of inclusion and accessibility. This idea that— not a lot of individuals with developmental disabilities, who have limited speech, have great literacy skills. Sadly, a lot of them haven’t had access to great literacy instruction, and so the idea is, rather than representing with text, let’s give them these picture symbols. Um, but there actually hasn’t been a ton of comparative research to say that these picture symbols are all that great or, um, exactly how much they help. And a lot of times, when I was working as a speech language pathologist, I would be teaching these picture symbols and, um, the question came of, ‘why,’ if I’m doing this teaching— maybe I should be teaching what I call, ‘orthography,’ or, the written word that is a lot more meaningful in the world than these picture symbols that are very specific to AAC technology. And, so this study was kind of testing for school age individuals with autism spectrum disorder, who don’t have that many literacy skills, what’s the difference in terms of how easily they recognize these picture symbols versus text? And how easily they learn to use these picture symbols versus text on an AAC device?

Matt: Yeah. So my question, then, is why not include both?

Christine: Good question. One thing that kind of seems to be the case is— you or I, when we see these picture symbols and words paired with each other, um, we look at the word because we’re literate. It— it’s the most salient thing to us. And then when we do that, we’re not really paying attention to these picture symbols and how, kind of, weird they are a lot of times. But someone who, um, someone for whom orthography is not that salient because they aren’t, uh, functionally literate, then probably what’s gonna happen is they’ll look more to the picture symbols and um not the word. And, in fact, almost every default of AAC technology for people with developmental disabilities is these picture symbols paired with the word, and so probably if individuals who use AAC were looking at these words, we’d have a lot more people with a lot better literacy skills. But we’re not necessarily seeing that happening, and, so, um, yeah. It doesn’t seem like there’s a lot of literacy learning that happens when you make that pair, um, so you’re kind of teaching one or the other. And if you’re going to teach one or the other, if it’s faster to teach the picture symbols, by all means, let’s teach the picture symbols and get people communicating as efficiently as possible. But if it’s not really faster, then my clinical instincts would be, let’s teach something that has meaning everywhere in the world.

Matt: Yeah. No— I think that’s really— it sounds so important, and sometimes the pictures aren’t super representative of the idea that’s trying to be conveyed. So, I don’t know, like, ‘angry’ is generally easier to represent, but, like, ‘scared’ could also be ‘surprised’

Christine: Well, and, Matt, you hit on something really important— which is that, um, just like every individual might do better with a different representation, not all words are the same either. And that was something that came up in this study as well is there are words that in the field of AAC we consider to be ‘high imageability’ words, or words that are really easily represented by a picture, a photo, a drawing— things like, ‘tree,’ ‘dog,’ um, you know, things like that. And then there are words that, how do you represent it well? And it’s hard to— so things like, ‘want,’ or, ‘take,’ or, ‘do,’ or, ‘see,’ and it’s these words especially that, um, at least in this study, the individuals with autism who participated weren’t— they meant nothing to them without instruction. Um, and so it didn’t have— they didn’t really seem to add value in that way. And then, with instruction, they didn’t really seem to be easier to learn than the words and, so, um, that again goes back to— I don’t know that we always, like, as practicing speech language pathologists, see them as that weird because we always see the word paired with it, and when you see the word paired with it, it kind of automatically gives it meaning to you. But if that word means nothing to you because you can’t read it, a lot of the symbols are just really really weird. And they’re not based on any research that says, ‘this is a good way to show ‘want,’’ um, and in fact, there’s some research that we could be making symbols that show, ‘want,’ for example, in a much better way.

Matt: So what would come next for this research, like, what’s the goal long term?

Christine: I mean— so the goal is, eventually, everybody has access to whatever technology is most meaningful and usable to them, and requires the least amount of teaching. So we can spend more time teaching actual language and communication— and there’s always going to be a need for individualized assessment because no two people are alike and there might be some individuals who do really well, who really like picture symbols for whatever reason. Maybe they grew up watching— reading cartoons with— or— not cartoons— one of those, like a—

Matt: Comic strip?

Christine: Comics, yeah. I don’t— I just made that up. But, you know, there might be some reason why those are something they really like. That being said, uh, one thing that more of the leaders in our field are talking about is this idea of ‘precision AAC,’ or, um, us getting a lot more precise with what we’re doing to optimize outcomes. And the sooner that we can get someone with the technology that’s really right for them, the sooner we can get them further in their journey of becoming fully competent communicators. And that’s the goal.

Matt: And, you mentioned that one of your goals was AAC for individuals with even more challenge than, I guess, what was available at the time, is that true?

Christine: That is true.

Matt: Yeah.

Christine: So, um, for me, I would like to, and try to continue, to develop augmentative and alternative communication so that we can increase, um, the reach in terms of, um, supporting people who are in the earliest earliest stages of their language development journey. And I don’t mean that in terms of, they’re young children, I mean that in terms of, maybe they’ve had a lot of things stacked against them when it comes to their language journey, and their communication journey, and they have yet to, um, have the opportunity to make it too far. So, individuals who, maybe we’re not even sure are intentionally communicating in any way, or individuals who are intentionally— seem to be intentionally communicating, but aren’t doing so in a traditional way— reaching them more, to just, be more inclusive with our intervention, um, but one thing that’s sort of a catch-22, if you will, um, is that it seems to be, right now, that the more physically accessible we make an option for what we call ‘AAC access,’ the more cognitively demanding it becomes. And, so, a lot of times those things that physically might be helpful for someone who is, um, still developing language, might be really hard from a more meta— metacognitive standpoint. If, um, they have yet to develop those metacognitive skills, um, it’s a lot— it’s a lot more straightforward to reach out and touch something and something happens than it is to have to, like, click through and something happens. Or use your eyes and something happens. And so we, we needed to be thinking about every piece of the puzzle to make AAC accessible. Not only from a physical standpoint, but from a linguistic, cognitive, all— every standpoint.

Matt: So, if somebody, uh, is unable to use an eye gaze because it’s just too complicated for them at that point, what are some of the alternatives that are being looked at?

Christine: Um. for them, yeah— so, I mean, one hard thing is I there isn’t a ton, a ton, of research that’s happening in this area. So I can’t, um, tell you a lot of really great news about things that are happening there, but, um, one thing— like the work of Dr. Wilkinson, Dr. Light, with the visual scene displays, is on this idea of photographs, videos, these are very meaningful things, um, we can make really big hot spots, so that people can reach out with their whole hand and make a selection, and meaningfully interact in that way. Um, there are, um, some— there’s some work being done on more multimodal access, so maybe someone doesn’t have a perfect point, but maybe they might reach toward an AAC device and maybe they’ll reach toward that AAC device and make a noise, you know, they do something like that and maybe we can get the technology to recognize that as a selection, and that would be great. Where someone doesn’t even— someone might not even intentionally be doing it, maybe they’re seeing a photo that they like and they’re reaching toward it, and then it grows into a way that they’re accessing augmentative and alternative communication.

Matt: Yeah. This is just— so first of all, thanks for calling her ‘Dr. Wilkinson,’ and not, ‘your mom,’ (laughs) um, AAC— this is one of the reasons I wanted to focus on this. We had this first episode I did with Kirsten and I was like, ‘I’ll do a few of these,’ um, because AAC is pretty neat; but it’s just this, like, really cool thing that we’re in the middle of seeing— AAC is constantly evolving, it’s this technology that continues to grow, and it sounds like there’s a lot that needs to still happen, but it’s exciting hearing about what’s already been done.

Christine: Yeah it is. It is exciting. And I think, um, definitely to any listeners, you know, I feel as a researcher I’m always wanting to contribute more, and more, and more, and I’m always feeling like we don’t know enough, but, um, you know, it really is incredible. Um, you know, it’s not that long ago that, um… this isn’t a fun thing to think about, but it’s really not that long ago that a lot of individuals with intellectual and developmental disabilities got sent away to residential homes. Away from their families, away from their communities, and didn’t have a lot of access to communication, or a lot of opportunities to participate in life. And, of course, a lot more than AAC has affected that, but AAC has really opened up a lot of doors for people, and, um, the more technology evolves, the more opportunities happen. And one thing that, um, I think about a lot is there’s— there’s the developments that are happening in AAC, but these technological developments are happening behind, um, technological developments that are happening by people who have, you know, all the money, and everything in the world. And they’re selling new iPhones with new gadgets every year, however often they come out, and, um, you know, we get to take advantage of that as that stuff evolves. And, so, actually, there’s some, um, technology that’s developed out there that I think would be great to start applying to augmentative and alternative communication that we have yet to even apply. So it’s— it’s multiple levels of it. Where, yes, like, we need to keep developing new technology to make AAC better, but we also need to keep harnessing technology that’s being developed outside of AAC in a way that’s meaningful, or, maybe meaningful, um, inside of AAC.

Matt: Yeah— no, this came up last episode, too. There’s so much— it’s just— we’re in the middle of, uh, what’s it called? A technological revolution.

Christine: Technological revolution.

Matt: Yeah. Um— there was a couple of things that you said in there that I wanted to, um, kind of, follow through on. Which— one was— a couple months ago I decided that I wanted to— to catch up on the history of disability as it’s portrayed in, um, film. Because I just think it’d be good to have that basis, and you’re right. The first several decades of documentaries are just, like, really depressing. It’s pretty shocking what was being done to people who have disabilities up as recently as, like, the 1990s. Which is— it kind of, I guess, emboldened my desire to do this— both podcasts, but also site, with the focus on arts. Because I think it’s great how far we’ve come in terms of people who have disabilities are now able to get the support they need to be artists. And, um, I think AAC is a great tool in that realm. Is— do you think, first of all, there is potential for AAC to translate into, um, being used for more artistic pursuits? Such as a performance or reading a poetry or something like that?

Christine: I do. And, I mean, I have a lot of thoughts about this. But I— I first just want to say, like, even on the most, you know, foundational level, we’ve talked, you know, earlier about how when someone has access to a form of communication they have more opportunities to practice language, and build language, and develop a lot of skills. And so when you think about artistic expression or self-expression, a lot of it, in terms of poetry, writing song lyrics, whatever the case may be, a lot of it is very language rich. So when I think about that question, the first thing that comes to mind is, for people who don’t have speech, the more that they have access to AAC, the more that— the more they’re developing their language, and the more language you have, the more you can express, and the more you can share with the world about you. And so just on the most basic level for people who have limited speech, AAC provides an avenue for self-expression that really wouldn’t otherwise be possible, um, that being said, there’s still a lot that could be better about AAC, um, especially when it comes to the performing arts in the sense of— the voices aren’t always, um, don’t always have, like, the intonation, or expression, or feelings, that maybe would be evoked by, like, a traditional actor, for example. Um, and so I think there’s definitely opportunities there. Obviously the literacy piece, the more AAC can support that, the more opportunities for writing books, and poems, and things along those lines become available. And, um, then, just from the visual side of things, too, you know, a lot of high-tech or computer-based AAC devices have cameras. And I think there’s a lot of opportunities in terms of taking snapshots of, um, your world that are a form of self-expression. I mean, people do that, like, all day long now, you know, um, and so I think there are opportunities for growth out there definitely, but, um, already ways that AAC supports that sort of thing.

Matt: Yeah. Well, you— I think you’re, you’re absolutely right. And this goes back to this techno— technological revolution, is, it’s kind of amazing how quickly things have changed. Um— I actually— this is something that I had to cut from the last episode because we couldn’t remember the name of the show, I just googled it, but there was recently a sitcom which featured a, um, uh, one of the kids in the family used an AAC device, uh, called ‘Speechless.’

Christine: Yeah.

Matt: Which is so cool.

Christine: It was so cool. And he, um, you know, you mentioned, like, the documentaries being sad, and a lot of times, like, even— even sometimes today, you know, when a movie has a villain, a lot of times they have, uh, they might have a disability. Even if it’s, like, a scar and an eye missing, or something, like, it’s just a lot of times signals, ‘bad,’ um, in the media. And so for them to show, uh, an individual who, and the actor has cerebral palsy in real life— he doesn’t, I don’t believe he uses AAC in real life, I believe he relies on speech— but for them to show, just, the real life struggles and successes, and personality, of a teenager just being a teenager who happens to use AAC, it’s really cool.

Matt: You’re right. It’s such a huge step forward, and it’s nice to see stuff like this happening that that will, hopefully, adjust or re-contextualize people’s mindsets about things like AAC.

Christine: We have so much research now, not in AAC, but in, you know, social sciences, about how important representation is for everybody. And so for a per— for a child who uses AAC to be able to see a teenager using AAC on TV, and, just being a teenager, I think is really cool. But also, even before I knew what AAC was, I mean, I was, you know, a kid, and, um, if I— even having a family member with a communication disability— I still would see people out in the world who I didn’t know how to communicate with, and I didn’t know how to interact with. So I— I was scared that I would do it wrong, or I would mess up, or didn’t know what to do. And so, if ever that show helped someone have, you know, the confidence to say, ‘I know how to interact with someone who uses AAC a little better because I saw it on this TV show,’ I think that’s great.

Matt: Yeah.

Christine: So, one thing AAC intervention research has been doing more is evaluating ways that we can get people with limited speech out in the community, um, interacting with people who don’t know them, who aren’t familiar with them, and when I think about being a spectator in the arts, I think about going somewhere. I think about, um, talking to strangers to get my tickets, I think about, um, you know, making comments during the show, or after the show, you know, I— believe it or not— I usually have plenty of thoughts about, um, I— I can talk a little bit about things I see. So, um, you know, just— even basic stuff like being able to say what you want to see, to order the specific ticket or something you want, is all something that AAC can do. And just allowing for more full participation in the community, and a lot of stuff that, you know, we don’t even think of as a barrier to going to watch a concert or something, um, and there’s also the online piece, too, right? Like, we all buy our tickets, probably, and stuff like that online nowadays for a lot of concerts and shows. And, um, one thing AAC devices are getting better and better at doing is interfacing with websites and stuff like that so that, um, someone can, maybe, search for what they want to see. Order tickets, um, different things along those lines, that can really, um, create a lot more self-determination, um, or opportunities for self-determination in terms of viewing art.

Matt: It’s, um, when one thing catches up, everything else kind of comes with it.

Christine: I think that’s really the case. And, you know, I sort of alluded to this earlier— but everything’s so entwined in terms of, you know, from our cognition, to our communication, to our language, to how we express that language, and, um, if you’re supporting one thing, you’re probably supporting everything. And, um, the more that someone has an opportunity to fully participate in the world, the more they’re going to have experiences and thoughts to express, and then, of course, hopefully they’re using AAC, or have access to AAC to express those thoughts and experiences that they have.

Matt: Um— have you had any experiences working with anyone using AAC in that context?

Christine: So— more I’ve had experience with individuals who were taking classes at community college, for instance, and had to give presentations to the class and things along those lines. And that was a huge source of anxiety a lot of times for people who use AAC— or, for the people that I had worked with. I’m not speaking for all people who use AAC. But, so I know that’s very different and not art—

Matt: No, no, I think it’s definitely in the same realm.

Christine: Yeah. Getting up and, you know, showing yourself, and doing your thing, and being, you know, performing for others, whether it’s an academic task or an art task, I mean, it’s anxiety inducing for most anybody. I worked with, um, a college student who gave her first presentation in a class, and she always sat in the back of the class, and no one talked to her, no one really paid attention to her, I don’t even think they necessarily knew that she was like a student in the class, so much as wondering why she was there. And she gave a presentation, and everyone saw that she was smart, and she had good ideas, and that she was a whole heck of a lot like them, but just communicated in a different way. And people were crying, um, and I was just standing there— she had wanted me there more for moral support, but also some little, you know, I.T. support as well. And, um, I was just, like, couldn’t comprehend why this was, like, an emotional experience for these students because she’s presenting on something, like, not emotional. History or something, you know. Um, and then I just realized that they had such— their— their view of her wasn’t really as, like, this human college student. And they were just so, I think, impressed to see her present, just like them, and, also, um, maybe having feelings of— not feeling great about not having talked to her up until that point. And, um, after that presentation, you know, people talked to her before class and after class, and she was much more included. And I think the arts really have a potential to do a similar thing— when I can consume someone being themselves, showing who they are, showing what they have to offer to the world, then I’m probably gonna see them in a different light regardless of who that person is or whether or not they have a disability. And be more apt to want to interact with them and feel like I know them.

Matt: Yeah. No— it’s— it’s, uh, it’s unfortunate that they had to have that experience—

Christine: Yeah

Matt: —to want to interact with her… this kind of goes back to what we talked about in the, uh, previous episode. Where Tanika talked about, um, people are more, usually, likely to want to engage, or, like, think, ‘oh they can do this,’ if it’s somebody who, um, like geriatric, who went from having speech to not having speech. But, yeah. It’s just, um, I guess it’s a good opportunity for people to realize, ‘oh, you know, she is just like us,’

Christine: Yeah.

Matt: Thanks for joining me. This was great. I think, um, I mean— I definitely learned— I say this at the end of each episode but it’s true, I definitely learned a lot from this, um, this opportunity.

Christine: I thank you Matt for, um, caring about AAC, and people who use AAC, and choosing to spend your time in this way. It’s, um, we need it in the world, and I’m thankful you’re doing it.

Matt: Cool.

Matt: Hi, welcome back to Mollynook podcasts, I’m your host Matt Wilkinson. This episode is the third in my series all about AAC, Augmentative and Alternative Communication. Joining me today is Tanika Peart, the co-founder of ACE innovations, a company whose mission is to provide assistive technology solutions to individuals of all ages. Tanika specializes in AAC and in this episode, our focus is on how AAC devices can accommodate entertainment and artistic pursuits such as poetry, presentations, and theater. We also look a little closer at devices from the low-tech like PECS, a binder full of flashcards with vocabulary, to high-tech like eye trekking technology. If this is something you’d like to learn more about and haven’t already, make sure to check out the first episode of this season where my friend Kirsten broke down the basics of AAC and some of the common devices. And as always, thanks for listening (reading).

Matt: So before we do anything else uh I’d love for you to introduce yourself? 

Tanika: Um, my name is Tanika Peart, I am a speech pathologist, I live in New York City, I work, um, across the lifespan— early intervention, or birth to three, all the way up to geriatrics. Yeah, I do a lot in speech but I specialize in augmentative and alternative communication— AAC. 

Matt: Would you mind defining, I guess, a little bit more specifically what AAC is? What it’s used for? 

Tanika: Yeah, so, AAC— big fancy word— augmentative and alternative communication, but when you break it down, say, somebody you know is trying to communicate with somebody but the communication partner isn’t understanding them, they might use it to augment their speech to get that message across. And then there’s alternative communication, so alternative means, maybe, someone is non-verbal or does not have the ability to communicate, say, verbally or in another means. So it’s an alternative way of communicating in its entirety. So AAC isn’t, always, you know, those high-tech computers that you see, you know, like, if you were in class and you were passing a note, like, you couldn’t say it verbally but you need a way to communicate that message, so you write it down. And then you might pass it. Well, I guess now people are texting but— (laughs) in the same way, it’s like a way to augment your verbal speech by sending a text message. 

Matt: Yeah, this is why I’m so fascinated by— and I, kind of, want to like dig deeper into AAC—

 Tanika: Yeah. 

Matt —for this series is because AAC is very… there’s a very large range of what an AAC device can be, to the point where it’s almost… it can be so personalized and so individualized, um, and it just, I mean, I know there’s a lot of, you know, no-tech, low-tech, high-tech… 

Tanika: Yeah. 

Matt: And you kind of started to do this, what are some of the ‘common’ or, maybe, ‘popular’ or, I guess, broad examples of AAC devices? 

Tanika: Um, the popularity, um, you know, varies on a— kind of— the type of device, whether it’s low-tech, uh, which would be more like your PECS or whatever, your high-tech, which is, you know, direct selection with your finger on an Ipad, might be your Proloquo2Go, um, and then your high-tech could be, like, an eye gaze or a switch scan. It could be that, um, Snap Plus Core First and communicator software. 

Matt: So it sounds like— this might be the wrong word for this— it sounds like there’s a lot of different ways of interacting with an AAC device. 

Tanika: Yes 

Matt: So they can be, like I said before, personalized, almost? 

Tanika: Yes. 

Matt: What are some of the ways that you’ve seen of using an AAC device that don’t necessarily rely on speech? 

Tanika: Yeah. So we call that access, how you access the device. So we want to find the most reliable access point for that individual, so sometimes they have, you know, motor challenges that won’t allow them to isolate their finger to touch something on a tablet, but they do have head control and they’re able to, you know, tap their head, um, against a switch that could be, you know, at the the right side of your head. Um, so they might be able to— as if you might click through something on, like, with a mouse, they might be able to click through the vocabulary with their head. Um, so it’s really about finding what’s the most reliable point whether that’s a leg, whether that’s a finger, whether that’s your eyes, um, whether that’s just a smile and a blink. Um, we can find a way to give someone access to a communication device just by finding that point. 

Matt: Yeah, that’s amazing. I think especially as you get into the higher and higher tech examples, it’s just, like, so incredible what’s available now in terms of access. I’d never heard of smile or— I’ve seen eye gaze before. 

Tanika: Yeah there’s actually this really cool, um, relatively new, um, software, I guess I’ll call it, called a neuro-node and it’s actually— I believe their company originated in Australia but it’s ju— it uses sensors by the contraction of your, like, any type of muscle to be able to activate, like, a switch. So if you can only, you know, barely move your cheek up slightly, or if you can barely move a finger, like, um, barely isolate it— it can take that and use it as an activation on, like, a tablet or something like that. 

Matt: Really cool. That is cool. That’s amazing— that’s amazing and I mean, this has all happened so quickly. 

Tanika: Yeah I always say that. Like, whenever I go into a training or anything, it’s really— they can literally change overnight. I remember one time, there was an app, another popular app, actually, called Go Talk Now Plus and it updated, and it looked completely different because it was trying to, you know, advance itself. You know, be more, um, sophisticated or user-friendly. And I went into the training and it was completely different than what I had used the day before, but that’s how technology is; it’s constantly changing and updating. 

Matt: Yeah that is cool. And this is a great transitional point, I think, my assumption would be, early days AAC was about giving people access to being able to communicate their needs— but, I mean, I would hope, you know ideally, it’s— do you think there’s any way that AAC is moving towards, now, opening up for entertainment, or leisure, or, um, like, artistic purposes?

Tanika: Absolutely. I mean, I— I went to Penn State, one of, um, my professors— I was on an AAC grant there from Dr. Light— Janice Light— and she always— we would talk about the different functions of communication, like one is behavior regulation which would be trying to get someone to, like, do something for you, to meet needs. There’s social etiquette, where it’s, you know, ‘please,’ ‘thank you,’ um, all of those types of communicative, um, exchanges. Um, there’s information transfer, that’s where you wanna, um, like share something with somebody, and then there’s also, you know, social closeness, where you want to tell someone that you care and all of these things. And so there’s so many different ways of communicating and I feel like because a lot of people are, um, just wanting to get needs met, we forget about all of these other things where we do communicate for all these different purposes. To interact with others, to participate in leisure activities, and one being the arts, like, all of these things are things that people do to enjoy life, right? So, like, our goal, I believe, is to provide a means for them to be able to access and participate in those activities. So, kind of coming back full circle to what you said, absolutely. Like, my most successful AAC user would be able to do all of those things seamlessly using their AAC device to communicate those ideas or, um, to act, or to sing, or to— whatever that is. 

Matt: It’s just, like, really amazing, too— like we were saying with how how technology is moving so quickly, and I think it’s really encouraging that it is because, I mean, ideally we’ll reach that if we haven’t already really soon— for creating access for all different people—

Tanika: Yeah. 

Matt: to do those things like arts and entertainment. So, I guess, maybe, right now, uh, in your experiences have you seen firsthand or have you heard about any examples of AAC being used in— in that capacity? 

Tanika: Um, I definitely had, say, kids that are, um, participating in, say, activities where there might be singing or reciting of, um, lines per-say, where we were able to program what those lines would have been, or what those phrases, or, um, they’re not phrases— verses that they would be singing; we could program and then they’re able to activate the device to communicate and sing those or say whatever needs to be said. Um, this is a little bit different but we had students who would use it to, uh, say the pledge of allegiance, you know, um, and they would activate each verse, um, of the poem— I guess it’s technically what it is—you know, so, like, activate each one and they were able to do that, where normally they wouldn’t be able to. So, um, I totally could see, um, you know, transitioning into reciting poetry, being an actor or actress, you know? Saying your lines through communi— communication device. Because, really and truly, everything that would be expected to be done verbally is how this device helps. So anything that anyone would be able to do verbally, theoretically speaking, is able to be done with the use of AAC. 

Matt: Yeah that’s— and I feel like I’ve seen examples of this before, with even just pre-recording a speech or having the speech written out to be spoken, and then presenting it on stage. I guess, if an AAC user, maybe, in like a theoretical, uh, example, if somebody using an AAC device asks you how they could go about, for example, reciting a poem, are there any ideas that you have for how to make that happen? 

Tanika: Absolutely. So it it depends definitely on the type of user. Um, so say the user was using a tablet with what we call ‘direct selection’ with their finger, um, we could definitely have it set up where, for one, we can, depending on how sophisticated the user is with their device, they can say whatever it is the poem is with the vocabulary that’s already on there. They need a little bit more support, we could create some type of a folder or something that has, maybe, each line where they’re able to hit each line and it’ll say the entire phrase or line of whatever the poem is, and then there’s some users who, um, it takes them a little bit longer to be able to communicate, um, the entire message in that way, and you can put it all on one button where that person is able to go to the podium or whatever, they select the poem, and it will read from their device. Um, so there are many different ways to to do that. 

Matt: And I mean, I— I wish that more people would encourage, uh, that—

Tanika: Yeah 

Matt: because I think, even, and this is just from, coming from my experience, um, you know I was in a, uh, theater troupe in high school, uh, which, um, was half typically developing peers, is what we were called, and then half performers who have Down syndrome. And, um, you know some of them are up front singing and their heart out and that was super exciting, and some of them were just on stage in the back and they were just happy to be there, and I think it matters so much for all of them. You know? Even for somebody— I think just being present on stage and being part of that is so significant for so many people. 

Tanika: Absolutely. And I think that it’s— it’s so important not just, like, for that person, especially, obviously, for them to be able to do that, but also for others to see, you know? So many people feel like people with disabilities are incapable of doing these types of things— 

Matt: Or even that they just don’t want to because they might not show how they— that desire in the same way.

Tanika: Yeah, exactly, exactly. and I just think that, it’s everything that we do, right? Like, sometimes we just need support to do it. And it’s the same thing with that— they just need support communicating it, you know? And I think that it’s very interesting because I work with my, my colleague Carolyn, and we, um, we do a lot of assistive technology stuff too, which includes, like, environmental controls, where, um, you know, I remember— I know— if you remember the old-school, like, ‘clap on,’ ‘clap off,’ with the lights, um, those things, to help people be able to do that. And it’s very interesting how now, a very high-tech home has all of these controls and, ‘oh I can press a button for my, um, my blinds,’ or my, you know, to start the stove or whatever. But these are all things that people with disabilities would use and it’d be like, ‘oh this person, you know, needs these supports,’ I’m like, now everyone thinks it’s cool. Like, yes people did this from before, you know? 

Matt: Yeah. 

Tanika: So, like, now it’s kind of like, let’s just use that philosophy and realize that we all find things to be easier when we use different things. And it’s just another thing to be used. 

Matt: That’s a great point, you’re absolutely right. Yeah.

Tanika: The idea of, why’s it a big deal, you know? It’s like, if you need glasses, you get glasses. If you need help talking, you get an AAC device.

Matt: And you know what? In that same kind of, this is a little bit of a tangent, but I just found this so fascinating— those, um, ‘wacky,’ uh, with, you know, quotations, infomercials where it was like, ‘how am I gonna get all my pots into the cupboard,’ or whatever— a lot of those were devices that would be extremely helpful for people who have mobility issues. Or the— there was a glove that had a peeler built into the palm that you could use to peel fruit or whatever— that’s something that could easily be used by somebody who has, you know, more of a challenge, um, with fine motor techniques with their hands.

Tanika: Absolutely, yeah. That’s actually a great I’m actually going to write that down 

Matt: But yeah, I guess all that all that is to say, um, that, yeah, AAC devices, I think, it would be great if they were just seen as another mode of communication. And, you know, there’s all these stigmas around AAC, and I think it’s just in general, people who— who use different modes to communicate, or to get from place to place, and not necessarily negative, like, uh, ‘oh, they’re,’ you know, ‘bad,’ or whatever, but I think there’s a lot of times this sense of, like, uh, pity where there doesn’t need to be. 

Tanika: Absolutely. And I I think about that all the time— and I think, I mean, this is even more of a tangent, but I think this is where we just have to, or I at least encourage people to think about, like, ‘normal.’ So I feel like that’s all an extension of, like, what we create ‘normal’ to be. And then whenever there’s a variation from that, that’s where it starts to get, like, ‘ooh that’s not normal,’ but if we kind of think, like, ‘okay, what is ‘normal?’’ 

Matt: Yeah, no, I mean, I definitely agree. It’s, um, just— yeah, recontextualizing for yourself, like, or even just, instead of seeing someone with an AAC device and— and doing that thing where you, like, slow down your speech for them when they don’t need you to do that, but then giving them the time that they need to formulate their sentence in response. 

Tanika: Absolutely. And I think that a lot of people start to understand that when it flips on the geriatric side, which is why I’m very happy that I have that experience. I, kind of, got thrown into that part unexpectedly, but it’s very interesting how it shifts, like, say, someone has a stroke or, you know, a traumatic brain injury or something— people are very aware of what somebody is capable of at that point. And I think it’s not until a lot of people have experiences of their own where they know that somebody is capable, who might not be quote-unquote ‘normal,’ that’s when they’re like, ‘oh. They have the potential to do so much more.’ Whereas sometimes when you don’t have that, because of this perception of it being strange or abnormal or whatever, it is— it’s almost like the expectations are set so much lower, right? You know, and I think when we can understand that this is just a person who might look different or move differently, that doesn’t necessarily mean that they cognitively don’t understand what you’re saying. You know? What— why do we have that association with somebody who might move or look different? 

Matt: Definitely. I— I just saw, um, a website, uh, where you could type in words— you could type in, like, the lyrics to a song, and you could— the program could create a version of that song being sung by, like, one of you, any random artist. So, like, Kanye West was in there— that was the only one I saw— but there were other ones in there, too. So even singing, which I think is potentially one of the— to me that seems like one of the more challenging ways of programming for an AAC— 

Tanika: Yeah, and actually, as you’re going, I’m just going to follow you on that tangent there, there are, um, ways to change the voices— uh— like in most programs now. That wasn’t something that was possible before, where you can pick what you, or what the user, wants to sound like. 

Matt: I mean— the idea of giving somebody AAC, a lot of times people say, ‘oh it’s providing someone the what they need to have a voice,’ and now it sounds like it’s even getting to a point where you can actually choose exactly what you sound like with that voice. I just think that’s so cool. 

Tanika: Exactly. And I— I love that. I love that, because I remember, I had a kid, and he was reading a story in his class, and he was able to change the voice to a ‘bad guy,’ and so the story started to read ‘like this’ (bad guy voice) like that. Those are things that we do, you know, when we read. When you’re reading a story, we don’t have the same voice, we change it and he loved that. And to think that that’s something so simple that we take for granted, that we’re able to do, um, it’s just really cool. 

Matt: That is, like, the literal most exact, like, wow— what a great— what a great example. Because I think that’s exactly what this podcast’s goal was all about, is hearing about how can AAC be used in these creative, entertaining atmospheres. And being able to switch the voice depending on who’s speaking in the story, that’s so cool. 

Tanika: Yeah. Yeah and, like, that’s something that I think people don’t know is an option. You go through the setup, and we pick the voice, and we’re done with that— no! Like, we change our voices all the time. Like— you’ll have a user who’s, like, trying to imitate somebody and they want to change their voice, you know, and I think that one thing that I do want to say, that I think is very important, is that a lot of people don’t give AAC users enough time to learn their devices before they write it off. Or they’ll say that it’s too much— they’ll be like, ‘oh well I don’t want to change the voice because they’re having trouble with this, I don’t want to confuse that person.’ Well, you don’t know that you’re confusing them. I— I always say, for myself, I actually had a supervisor, her name was Bev— Beverly. And she always told me, she’ll— if there’s one thing that you learned, it’s to assume competence. And I take that with me everywhere. I’d rather start here and then have to simplify a little bit, than, like— I know what it’d feel like if someone came up to me— and it’s happened to me before— where someone thinks that I don’t understand, and I’m like, it’s offensive. Do you know what I mean? So why— why do we do that? Um, but what I’m saying is, I always say, whenever I’m giving someone an AAC device or encouraging someone to consider it, I always say— a typically developed a typically developing child hears tens of thousands of words before they’re expected to say one word. Like, they don’t say a word until they’re, like, a little over a year or older. Like, what is it? 12 to 18 months or whatever? And then we have an AAC user, some who might have some, you know, learning challenges or whatever— and we hand them this device and we say, ‘talk with it,’ they’ve never seen anybody do this before, they never— they don’t go around the world like this typically developing kid seeing people talk, their mannerisms, how to do all that, and then we just give it to them and then we say, ‘in a month I’m gonna make a decision whether or not this is appropriate for you,’ Right? No, like— like, it takes a very long time. So, when, like, say someone’s listening to this podcast and they want to try this, they’re like, ‘it’s not working,’ give it time. Like— give it more time than you think it needs. Because if you threw me into another country and expected me to perform in the arts in another language, learning other mannerisms, learning other inflections, I could not do that in two months. 

Matt: Yeah. 

Tanika: Or— unless I had some type of intensive program every day and I don’t work, like, I can’t do that. So don’t write it off. It might take a year. It might take a long time. But I think that it’s important for people to know that these things take time, you know? Think about the tens of thousands of models that— that typically developing kid gets before saying one word and think about how many models that AAC user got of somebody using it before they’re expected to say it; or how many models of somebody using their device to perform or do poetry or whatever before they’re expected to do that. 

Matt: No you’re absolutely right. And that’s what I was going to compare it to— is trying to learn another language in a month or whatever. It’s— yeah. So, I mean, that’s great— I think that’s really, really good, um, perspective. I was going to say advice— it is a good advice though. 

Tanika: I hope that, like, it’s just something to consider, you know? because I feel like AAC is new to a lot of therapists, a lot of people. And I think it be them being intimidated sometimes impacts the use it’s a little overwhelming and I get that— but I always say, just think about it. Whatever goals you would have for a kid who isn’t communicating, but you thought they were verbal, start there and incorporate the AAC with that, you know? Start there because once you start there and you start to build, it all make sense. And then you might have that user who is telling jokes and, you know, and that’s another cool thing with AAC is telling jokes— 

Matt: Didn’t you have a user— an AAC user whose first word was, um, ‘fart’?

Tanika: Yes! Yeah he was just like, ‘fart, fart,’ and he was dying laughing. And I remember the— I forget who it was, the teacher or the parent, or something— they’re like, ‘oh my gosh,’ and I was like, ‘careful what you wish for, now he’s started going around saying fart all the time,’ well this is your kid, this is the personality coming out, the jokes. You know, the— the, um, just the personality. Like, my goal is obviously to get individuals to communicate, but let their personality come out. 

Matt: Yeah. I mean I think that’s a huge part of communication— and that’s another thing that I think is so cool about AAC, is, I think if you see it for the first time and you don’t really know what it is, you might not be aware of that personality can come through. Like, in the case of saying ‘fart’ for the first time. 

Tanika: Yeah.

Matt: This is great— this has been a lot of fun. I think we should probably look towards wrapping up, um, if that’s okay. 

Tanika: Yeah. 

Matt: So I’d love to hear any closing thoughts, anything that you think would be a good wrap.

Tanika: Yeah, I mean, I guess the main thing for me is that expression of assuming competence. And, just, like, assume that whoever, like, or that person who has AAC is able to do so much because, you know, we all have things that we love to do, and we all have hobbies, and I feel like, um, just talking— like coming full circle— about what we were talking about with, like, the arts and everything like that, um, assume that the user can do that, and ask them, you might see them light up, you know? Like, just assumed that it’s possible, and that’s with the arts with everything, and I feel like it all just like falls into place. Your goals fall into place, your intervention falls into place, and it’s really just such a rewarding thing, to like, know, that you and the user are working to goals that they you both want. Not just ones that you created for them. You know what I mean? 

Matt: Yeah. 

Tanika: Just to assume competence, and to just support whoever it is in meeting their, their goals. 

Matt: Definitely. That was super cool. That was a great wrap-up. Um, so yeah— I mean, thanks so much for joining me. This was super, uh, informational for me. And a lot of fun. 

Tanika: Yeah, thanks for having me. I really had a lot of fun, too. And um I hope that somebody out there finds it useful

Matt: Hi. Welcome back to Mollynook Podcasts, I’m your host Matt Wilkinson. In this episode, I continue my exploration of AAC and turn my focus to the relationship between AAC (Augmentative and Alternative Communication) and live performance. Joining me are Kenz and Margalit, two members of the Penn State Sign Language Organization, a student run org which consults with a faculty advisor skilled in ASL. The two of them explain the way that ASL (American sign language) has been incorporated into the For Good performance troupe, a theatre troupe which provides performers with Down syndrome the opportunity to take center stage. A key role of the Sign Language Org is teaching that group of performers the signs to specific songs. ASL is a complete, natural language that has the same linguistic properties as spoken languages, with grammar that is different from English. It is also considered a form of AAC in the sense that it can be used to augment, or as an alternative, communication but it is good to remind ourselves that this is a fully-formed, rich language of its own.

Two quick notes before we begin: I’ve made sure our discussion of specific signs is accessible to listeners (readers) but if you want to see the signs demonstrated when we’re discussing them, I’d encourage you to check out the video version of this episode on mollynookfilms.com, which includes Kenz and Margalit demonstrating the signs. And on the topic of accessibility, a new page has been added to the Mollynook podcast site which will offer transcriptions of all the episodes. Season 2 is available now and season 1 will be soon. As always, thanks for listening (reading).

Matt: Hey everyone, how’s it going? 

Kenz: And then we’ll just like…  I am Mackenzie, and I am a senior here at Penn State, and I am the president of Sign Language Organization. 

Marg: Um, and hi I’m Margalit, I’m a sophomore at Penn State, um, and I’m the THON fundraising chair in Sign Language Organization. 

Matt: And you’re gonna be— are you leading the Sign Language Org next year? Or you’re leading For Good? 

Marg: For sure I’m gonna be taking over, um, For Good for the Sign Language Organization and being the primary like liaison between those two things, um, but we haven’t had elections yet for Sign Language Organizations so we’ll figure all that out later in the year. 

Matt: Cool. Well, a good place to start, then, is talking a little bit about what the Sign Language Org is and maybe how you guys got involved with it. 

Kenz: Sure. So, I entered Penn State as a freshman Communication Sciences and Disorders major which, is a big word for speech therapy, and they had this class offered to take, which was Deaf culture, and I just became really intrigued with Deaf culture and about the language of American Sign Language. I had known nothing about it previously and I heard through the CSD (which is the acronym for the big word Communication Sciences and Disorders) that there was a Sign Language Organization at Penn State and I said ‘no way’ I have to get involved. So I got involved as a freshman, knowing no sign language at all, and then I am now a senior and I am the president because I stayed dedicated to it and took, um, all of the outreach opportunities…  Marg, do you want to talk about how you got involved? 

Marg: Sure, um, I when I was in first grade, my teacher— his wife taught at a school for deaf students— um, and so in my first grade classroom we just learned, like, the abc’s and a couple of words, just because, you know, he was involved in that community. And ever since, like, learning the alphabet I always wanted to learn ASL, and then growing up I tried to teach myself a couple phrases and words, but it never really worked out, and ultimately one of the reasons I chose to go to Penn State for college and I looked into it was because I knew they had a sign language program, I knew they had a couple classes, um, and so when I got to Penn State— I’m a Human Development and Family Studies major, so not CSD, but— um, I knew I wanted to take sign language. And before— the sign language classes at Penn State, um, are really— not ‘competitive,’ but, they’re, like, hard to get into because a lot of people want to take them. So my first semester, I did not get into the sign language class, and I heard from a friend that there was a sign language club, I was like, ‘oh, well I have to join that,’ um, and so I’ve been involved since I was a freshman and now I’m in ASL 3 this semester. 

Matt: It’s nice to hear that it’s ‘competitive’ — that means there’s a lot of interest in learning sign language, which I think is really important. I also think it’s really cool that your— that you learned it in first grade, I think that’s also really important. I’d love to see sign language more commonly taught in elementary, middle, and high school. And then, let’s move, I guess from Sign Language Org into, um, what’s the connection between For Good and the Sign Language Org? 

Kenz: So, I got involved with For Good very early on when I joined Sign Language Org, which to say, I was nervous because we were going to be ‘quote, unquote’ ‘teaching’ the individuals sign language to these songs and— now, sign language, going back to that really quickly, Sign Language Org always just likes to promote the fact that we’re trying to spread Deaf culture and deaf awareness because this is not our first language, and we should be respectful to it, and we are just trying to provide awareness to the community. Marg, do you want to jump in about your experience? And then.. 

Marg: Sure, yeah, um, I— my first semester, I have a friend who is from State College, she went to State College High (I believe is the name of the high school) and she was involved in Best Buddies, um, which I was also involved in, in my high school. And she told me, like, there’s this group of performers, they all have Down syndrome, like, let’s go see them. And I went and it was so cool, I loved it, it was so much fun, and I at that point I wasn’t involved in Sign Language Organization, um, so it was actually perfect because I knew that I still wanted to be involved with something similar to Best Buddies in college, and I knew I wanted to learn sign language, so this was actually like the perfect match. And I remember the first time we all signed— or some people were singing and some people were signing— For Good, the song ‘For Good,’ and it was almost, like, magical. Like, everybody just singing and signing together. It was so fun.

Matt: I was just gonna say, I am— cause I did For Good in high school, um, as a peer volunteer— and then after I graduated I stopped doing For Good just because I ended up with a lot more work and school than I expected, but I went to see it the first time they, uh, incorporated sign language and it was like… it’s such a powerful experience realizing, like, oh: this is something for everyone now. Something just really quickly, to that point, too, that I thought was really cool is, I read this recently in an article— so you guys also are interpreting the signs alongside the For Good troupe, um, underneath the stage, like, on the ground in front of it, and I just read an article about sign language interpreters, when they’re doing performances they’re not performing they are providing that service to those, uh, who need— who are using ASL. So that’s really— I think it’s a good thing to clarify. And it’s also just kind of a neat thing. 

Kenz: And I just had to add on, um, it is also just a great way for those, maybe in the troupe, who have a harder time expressing their communication needs out loud and voicing it, they’re able to sign along with the songs, and it’s just amazing to see how that comes together and they’re able to do that. 

Matt: Yeah that’s really cool. Actually it’s funny that you brought that up, too, because this, um— I’m hoping that for this first, like, batch of podcasts for the new year we’re going to focus a little bit more on AAC, sign language being a form of AAC, so that’s also a good point. It’s— it’s cool that performers are also learning sign language so they might be able to use it themselves. Let’s even get more focused now, uh, and talk about interpreting. Do you guys, off the tops of your heads, maybe list some of the songs that, uh, the Sign Language Org has interpreted and then taught to the performers before? 

Marg: Yeah, um, last— I know the, the semester that I was most involved with, recently, it was ‘Happiness’ from Charlie Brown, um, ‘Oh What a Beautiful Morning’ um, from Oklahoma I believe, and, um, ‘For Good’ from Wicked. And I don’t know, Kenz, you’ve been in the troupe much longer than I have, so I don’t know if there are any others? 

Kenz: Um, For Good was definitely one that has always been the biggest— but I when I started and I took over for a previous president, Dana, is when I really started focusing in on all the songs, was Happiness. And I just love that. 

Matt: Yeah I think that’s all of them, actually. I think you— uh, and I think the— one of the other cool things about switching from in-person to Zoom, because of the pandemic, has been seeing sign language even more integrated into the For Good performances. So let’s talk about approaching them and, um, interpreting them. What does that process look like? 

Kenz: Right. So, again, I always preface this with, we’re hearing individuals just trying to spread awareness about the language with the most— utmost— respect, um, so as a hearing individual and as Marg said, she’s taken the ASL classes, I’ve taken both ASL classes with professor Sommar Chilton, who at the time was the only professor on campus teaching American Sign Language; and now we have Shasta who is a deaf professor on campus, I haven’t gotten the chance to meet her yet, super amazing. But I TA’d for American Sign Language as well, and we really focus on the grammar. So we approach the songs by first running through and reading all the lyrics, and we just write them out and then underneath every line we take those and we rewrite them in the ASL grammar, which is that ‘Topic-Comment’ structure; because we want to establish and set up the time that we’re in, if it’s in the past, if it’s in the present, and so on. 

Matt: Cool. That’s actually really interesting, I’d like to just talk quickly more about that, like, could you give an example of a sentence, uh, maybe from one of the songs, and then how you restructure it to fit into ASL’s grammar? 

Kenz: So, the one of the lines that I wrote down was from ‘Happiness’ when it says, ‘telling the time,’ we’re not going to be like, ‘telling’ the time, we do (sign) time and then look at it. So that was one that I thought of, and the same thing with ‘catching a firefly and setting it free,’ we have to first establish that there is a firefly before we can catch the firefly, so we say ‘firefly, catch.’ 

Marg: Yeah. That’s another thing— like, we’re not— when we translate the songs, it’s not like literal. Like, you’re not, um, it’s not like, ‘tell.’ Like, if you were gonna say, ‘telling’ and you would touch your, um, index finger to your mouth, like, you’re not ‘telling’ (speaking to) the time, it’s more like that sentence means, like, you’re looking at the time— so you have to think about what each line is actually— the meaning of each line— rather than just the literal words.

Kenz: Yeah.Because for every english word or sentence, there’s not a specific sign. So we’re translating it to what it would be in American Sign Language. 

Matt: Yeah. That’s so— this is actually— this leads right into my next bullet point I have written down which is, um, the literal meaning or, like, the literal translation versus the, um, idea behind it. The obvious one that I know is ‘for’ ‘good’ (signs: ‘for’ and ‘well’) right? But that’s not how you would, uh, sign the idea behind ‘for good’ um, so how do you approach that? How do you try to maintain the meaning of the song while also keeping it accurate, um, within ASL?

Kenz: So… that is, like, um, how you just did like the ‘for’ ‘good’ — in a sense, translating to American Sign Language, we’re trying to say that— that line is like, ‘because I knew you,’ like, ‘I’ve been changed for good,’ which basically is meaning, ‘for the better’ like, ‘for improvement,’ (signs: for the better). So we’re trying to take more, like, signs that are— yeah, Marg, do you know what I’m trying to say? 

Marg: Yeah I think so. I think, um, we’re trying to— you know as interpreters, your— the goal is to provide the best possible translation, um, to convey— because you know, if we as hearing individuals are sitting there listening to the song, like, when we’re listening the song ‘For Good’ we’re not, um, hearing, you know the literal meaning. It’s a song about friendship, it’s a song about the impact you’ve had on someone’s life, um, and so instead of having, like, the words up for interpretation, I guess, we— I think our goal is to convey, like, the emotional meaning of the song through sign language as well. 

Matt: I’m also curious, Dana mentioned this like three years ago (maybe more) uh, when I talked to her about this for something else, sometimes it seems like these signs— and sign language is a cool language too because a lot of times the signs themselves feel very intuitive, like once you know it you’re like, ‘oh of course,’ right? 

Kenz: Yeah

Matt: Um, so when Dana was talking about um coming up with some of the signs, she was talking about ‘through a forest,’ or something— I forget the exact song—(Kenz does sign for forest) yeah, and it’s cool, I— I don’t— I usually don’t use video for these, I probably won’t for this one, so do you want to describe what you’re doing? 

Kenz: Yeah, so for this, the sign is ‘forest’ which— Marg do you remember exactly which line that is? 

Marg: it’s like, ‘halfway through the woods,’ or something like that? 

Matt: Yeah that’s it. 

Kenz: Like, the woods obviously, like, because you can do many trees like this, or you can animate it like in lieu of where the music is still continuing to go. Like, we’re still continuing with our songs ‘halfway through the woods,’ and she just keeps— like, she holds that note out, so that’s essentially what we’re doing. And just make it more animated to follow along with the line. 

Marg: If people are just listening to this, like, Kenz has her, um, her right arm— she has it upright, um, like a tree— like standing up like a tree— and then it moves past her, and, like if you’re just looking at it, it looks like you’re— the person— is traveling through the woods. So I feel like, um, it’s very artistic. ASL is a very, obviously, very visual language, um, and so it just— you know— emphasizes the meaning of that, while also, you know, making it a more enjoyable visual experience, I think. 

Matt: Yeah, that’s what I was gonna say. It’s like a really beautiful, uh, interpretation of that line, where it’s not— because— what she is doing, like you said, is each arm is a tree and she’s throwing up multiple ones (going) behind her as if you’re going forward through the woods and it just adds so much. It makes it a very musical, like, the way that we interpret music, it makes it a very visual version of that, which is cool. Same with ‘comet,’ I love how ‘comet’ is— (Kenz demonstrates comet: pointer finger moving in front of her face, with her other hand balled up like a planet behind it) yeah I think that’s very cool. It’s the pointer finger going across and there’s a moon behind it, or something— some sort of planet, yeah. Do you guys off the top of your heads, maybe, uh have any other examples of where you’re, kind of, creating a visual? Like an interpretation that’s very visually driven like that? 

Kenz: I have ‘Happiness’ up so— 

Marg: I was going to say, my— I think my favorite line of ‘Happiness’ and my favorite one to sign, I can’t remember what the exact line is, but it’s something about, like, taking a walk and holding someone’s hand and the sign for walk is: you have, like, your two hands, um, they’re all five fingers are out and you’re like swaying them back and forth like mimicking feet and then that line goes on, you’re doing the walking motion, and then you grab the other hand and like sway it back and forth, um, and I think that line is just the cutest because, you know, it does a good job of showing you’re taking a walk and then you’re holding someone’s hand. 

Matt: I had never thought about that, too, that’s like that’s a neat, um, example of that. 

Kenz: That was a line that definitely stuck out, um, to the For Good Troupe too, because they were like, ‘I love that! You can just walk and hold hands,’ and I love that line— so cute. 

Matt: I had a great time learning ‘Oh What a Beautiful Morning,’ 

Kenz: Yes! 

Matt: ‘Happiness’ seems like a very easy song to get a handle on—

Kenz: Yeah. 

Matt: Yeah, what is your approach, usually— I know we talked about this a little bit before— but when you have those really, um, abstract concepts being brought up, like in, uh, the Oklahoma song, like you were saying before, what do you look for? How do you break down, like, a very uh abstract concept into a real or easier to sign, um, sentence? 

Marg: Sure, I mean, um, I know I wasn’t involved with the, um, glossing— glossing is just, like, translating that written English into the written ASL, um, but occasionally in Sign Language Organization we gloss songs like, I think we glossed, ‘All I Want for Christmas Is You,’ in December. And, like, when, when it’s those tricky lines, um, that are long and abstract, I think the best approach there is saying, ‘okay. What’s the key meaning of this sentence?’ like, ‘what is this sentence trying to get across?’ um, and then you can consider things like setting up things in your space. ASL is really unique in that, like, um, like if you want to say something about like, I think in ‘All I Want for Christmas,’ — I’m sorry I’m deviating away from that Oklahoma song — 

Matt: That’s okay, yeah. 

Marg: But I think I— it was like, ‘hang the stockings above the fireplace,’ or something and that was kind of a complicated line, so, like, the first thing we did was set up a fireplace, like, if you draw out the space and set up a fireplace, and then you can set up, like, okay: here’s a rack, and I’m gonna hang a stocking, um, so I think you can use those unique elements of ASL, like Kenz was saying. How, instead of— you wouldn’t sign, like, ‘turn your head,’ but instead you can simply, like, physically turn your head, um, so I think it would be like, ‘okay what’s the key meaning of the sentence? What do we want to get across? And how can we do that using the unique features of ASL?’ 

Matt: Let’s talk, I guess, a little bit about, um, teaching it, then. Because the other huge part of this is, um, you know— interpreting the song and then getting it down yourselves— and then you have to teach it to another group of people. What does that look like, how do you approach teaching it? 

Kenz: So teaching it— because I always— like I have been saying, these people are gonna be like wow this girl is so repetitive, I try to come across as respectful as possible because this is not my first language, so I am trying to continue to spread awareness and teach you the best I can— so it’s completely different, I would say, when I’m teaching, like, the For Good Troupe versus when I’m teaching just Sign Language Org in general. Like how Marg was saying, ‘All I Want for Christmas,’ — the For Good Troupe just loves to learn the signs, so I just absolutely love that, but we also want to keep it simpler in a way, since, now especially, it is on the Zoom platform for them, so we don’t want it to get too confusing and overwhelming. 

Matt: And you have a huge age range, too. I think the youngest one is like, seven— 

Kenz: Yes! 

Matt: — and then the oldest and you have is, like, 27 year olds. So that’s a huge age range to, um, accommodate. 

Kenz: And to keep engaged. And so we want— that’s why we pick songs that we’re going to sign that will keep them interested— and want to keep them signing. So my approach when I teach something, I’m not going to be like, okay, so I’m not going to teach them the whole alphabet. I teach them in ways that I will help myself remember the signs; because I think, ‘oh,’ like, I remember ice cream is just like licking an ice cream cone— ‘I’m eating my favorite ice cream.’ I try to make it relatable for them so that they’re able to remember the signs. 

Marg: I think, also, as mentioned before, a lot of the signs— maybe not right away— but when you learn the meaning behind each sign, it can be very intuitive. Like, I’m thinking the sign off the top of my head is ‘change’ which we do for, uh, the song ‘For Good’ — like you, if you saw an interpreter or someone, who, um, uses sign language do that sign, you may not know what it means right away, but um, if you’re explaining it to someone, like, ‘oh you have one hand on top and one hand on the bottom and then you switch them,’ like, then they’ll understand. Like, oh it’s changing. Um, and like a lot of it, once you know the word behind the sign or the meaning, it becomes very intuitive. 

Matt: That’s so interesting. Well, actually to that point, too, this is a little outside— you (Kenz) did the signs for the CSD group— but that was also being created, that was generated by the the people in the class, do you think that was— that was cool for you because you had a little bit more influence over what was being done? Or is there kind of a challenge there, too, in terms of, like, when someone is creating the song on the spot? They could come up with a word that you’ve never thought about, or a sign that you’ve never had to think about before…

Kenz: Yeah, no it definitely— well first, I felt a little bit more confident because I had already taught For Good and I was like, I got this. I have CSD 497, I can do it if they ask me to do it, and they asked me, and I was still nervous because it was— although the LifeLink students, some of them are in For Good, not all of them are. And it was also PSU students who I never— who had never shown up to Sign Language Org before so, I definitely, always, get a little nervous before I do that, because I’m afraid someone’s going to be like, ‘hey do you know, like, two different signs for that,’ or, ‘is there a different way you can sign that?’ because I don’t want to confuse everybody else and I don’t want to confuse myself. But it definitely helped me, and it helped me to become more confident even with this semester. 

Matt: Yeah. I mean, that’s, that’s, uh— I couldn’t imagine teaching someone else sign language. It’s, like, very— I can’t even— I’ve been doing sign language for a couple of months, since, uh, actually this since August, so a while now, (kind of in a sense) uh I don’t think I could keep up with anyone else who, uh, knows ASL. Though it’s— yeah— it’s like I don’t even know how to describe it because it’s not even it’s like, you almost have stage fright when you’re trying to put the signs together in the correct— 

Marg: Yeah 

Kenz: Yeah I know that— yeah, go ahead Marg. 

Marg: Yeah I know this summer, I um, I was standing in line at a grocery store and a woman behind me was wearing a mask with a window, um, and so, like, a clear window so you could read her lips. Um, and I, I asked her, I was like, ‘oh where did you buy your mask?’ because we had to get those masks for my ASL class in the Fall, and she was like, ‘I’m sorry, I’m deaf.’ And so I asked her if she knew American Sign Language, but, like, it was so rocky for me. Like, I could— I could barely get the signs out. I got very nervous, um, like I’m always practicing sign language, um, and, you know, going to these silent events, but you really can get, like, almost stage fright when trying to communicate. 

Kenz: Yeah and it happens to everyone, I believe. Because it happens to me when I sign with my Deaf friends, it happens to me if a deaf individual comes to my work, and I’m like, ‘oh,’ like, ‘I can sign,’ and then they ask me something and I’m like, ‘uh I kind of, like, forget so give me one second.’ And I think the stage fright— it doesn’t come across as a rude thing, it comes across that you care, because you want to be a part of Deaf culture and this language. And ‘big D’ Deaf, they have— they were born deaf, American Sign Language is their language, and hearing people, for the longest time, have discriminated against them. So just trying to be an ally for their community, it makes them feel more comfortable. 

Matt: Yeah. I think we’re getting close to wrap up, but before we end, uh, do you either of you want to tell, like, I don’t know, a moment from teaching ASL or maybe interpreting a song that was very, uh, impactful or affirming for you in some way? 

Marg: Sure. I mean, I don’t know— that ‘Happiness’ song— and when, with the line, like, ‘happiness is anyone and anything at all that’s loved by you,’ I get chills every single time we sign that line. I don’t know why, um, I think watching, I mean I missed when we were in person and you could really stand there and see everyone signing together, but it’s just such a wholesome song. And seeing everyone learn together is so nice. 

Kenz: I have to say, probably last spring semester, which is when— the first time that I had taught everything was going to be performed on stage. So I was, like, very nervous. But it was so impactful to me because I sat on the chair in the front row and they were all lined up to sign ‘Happiness’ and it just, like… it happened. Like it’s just in the blink of an eye, like, it was over. And I had someone record it so I could go back and watch it, and, it definitely impacted me— but for the way that I taught it, for the way that it came across, or, because I’m hearing and I’m teaching American Sign Language, and I just wanted it to come across as, like, we’re doing this for the better of the community. Not— and not only for the For Good Troupe, but for the audience members who are coming to see it. 

Matt: I think what’s so, uh, amazing about adding sign language is that it’s a very— it’s kind of an advocacy point, for everything, because you never know who in the audience will benefit from having the signs being done on stage; it’s a great kind of way to encourage people to go home and look up the signs for themselves, or even just start thinking about like, ‘oh that’s comet, that’s cool, now I know that.’ But I also think it’s really cool because, um, I think people who have Down syndrome, you know, they also get discriminated against a lot. And I think a lot of times people assume that they know less than they do or that, you know, they’re not as intelligent, maybe, as someone else, so I think having them performing the signs along with the Sign Language Organization is a very powerful, um, move. It’s really cool, and it, um, it really hits me. 

Kenz: Yeah me too— I get goosebumps. 

Matt: Um, so anything else? Any closing thoughts? 

Kenz: No I just love how you just— summed that all up. When they look— for the first time and they, um, did it on stage, I was just so impressed. Because how you said— um, I’m going to graduate school for speech therapy and I will work with children who have Down syndrome so I am not only advocating for the Deaf community, but for individuals with Down syndrome. And I was just so impressed. 

Marg: Um, yeah, the same thing. I mean, I— um, I said this before, but I think For Good is, uh, one of, like, one of my favorite things I’ve ever done. I loved, um, being in Best Buddies. Always, I’m very passionate about accessibility, um, in all forms. People with Down syndrome use ASL to communicate as well and so I just love how it all comes together. And it’s so, even, entertaining! Like, um, I was watching the performance with my sisters and it was just like, it’s so fun! It’s so fun to watch. At the end of the day, like, it’s a performance. So yeah.

Matt: Hi, welcome back to Mollynook podcasts, and happy 2021. To celebrate the new year, I’ve decided to launch this episode as the first podcast of Mollynook podcasts season 2. In this premiere episode, I chatted with my friend Kirsten, a graduate student at East Stroudsburg University about her experiences as an SLP extern (speech-language pathologist) and with augmentative or alternative communication, or AAC, devices. In this episode, Kirsten references ACRES, an organization we worked at together which provides support to adults on the autism spectrum; and a class at Penn State, CSD 497 which explored how communication goals can be supported through theater and performance techniques, both of which one can learn more about in my other podcast series, Pieces: the ACRES podcast, and Mollynook podcast season 1 episode 1. And as always, thanks for listening.

Matt: Hey how’s it going?

Kirsten: Good how are you?

Matt: Good. Um, why don’t you just start by telling me a little bit about what you’ve been uh doing for the last couple of years? What are you up to?

Kirsten: Yeah. So I left ACRES the summer after I graduated with my undergrad degree in communication sciences and disorders and I went ahead and started my Master’s degree at East Stroudsburg University that following fall for speech language pathology. And I have been mainly up to just grad school. That takes a lot of time so that’s what I’ve been doing— and I finished all of my coursework in December and so now we’re on to just externships and I have to hand in one big portfolio, and I have to take one test, and then I’m going to graduate and be done.

Matt: Wow that’s awesome.

Kirsten: Yeah so not bad. Lots of school.

Matt: Would you mind quickly, just, in your own words defining SLP?

Kirsten: Um, so an SLP is more than just speech and language because, obviously, we know more goes into speech and language. You have to be able to hear, you have to be able to think properly, you have to have proper brain functioning, breath support to talk, um, means, modalities— that’s where AAC can come in. Um and it’s much more than that— it’s cognitive stuff, too, so anything from the brain to the diaphragm.

Matt: I would love to hear a little bit more about something you mentioned about one of your— one of the people you work with in your externship; which is somebody who really likes singing and, uh, musical theater.

Kirsten: Yeah, so, um, I’ll kind of prelude this too with the fact that it was just so meant to be that I had taken the class at Penn State that Megan had talked about and that, um, Krista Wilkinson, your mom—

(Matt and Kirsten laugh, Matt’s mom co-founded the class)

Kirsten: And I originally walked in the class thinking it was just a neurology class because I was confused with the codes and my counselor had helped sign me up and I’m not a theater person, I can’t sing— I’m tone deaf. (Laughs)

Kirsten: And with having that background I actually had this client as part of my practicum. So I was seeing clients in our clinic on campus while taking classes and being a student. So after their first semester of grad school, you start seeing students, adults, patients, kiddos, from the school in the clinic and so this was one of them. And he’s an adult with Down syndrome and he particularly had a lot of trouble with articulation and just with the nature of Down syndrome and the anatomy changes, articulation— speech sounds can be very difficult for individuals with Down syndrome. And so he did use his phone as an AAC device and had an app… however he wasn’t a fan of using it. It really wasn’t super functional for him and so when I first met him he had told me that he loves musicals and he is obsessed with Cats and he is obsessed with—

Matt: Andrew Lloyd Webber, right?

Kirsten: Yes. He loves Andrew Lloyd Webber. He is obsessed with him. And so I was like, ‘okay.’ Like I’ll kind of, like, feed that into the activities. So we were working on “wh” questions and inferencing and so I pulled up a— like a picture from cats and be like, ‘hmm what are they doing? They’re on a stage, it looks like they’re moving, they’re all doing the same move,” and I struck a chord with him when I asked him— I played a song and I asked him what song it was from listening to just a few lyrics and he started singing and he was… clear as day with his singing voice and I was like, ‘oh my gosh,’ like this is the perfect opportunity. It sounds kind of weird and mom kind of looked at me super weird but I was like, ‘so here me out— we’re going to work on articulation through singing,’ because the way that he changes his position, and he sits up, and he’s straighter, and he’s he has a stronger breath support, his articulation is pretty clear— I mean it makes sense because when you sing you over articulate so we called it like a ‘sing-song’ voice. Then I’d ask him to say ‘hello,’ like in a very melodic way, and he was working on that, um, through sessions and he became a lot more clear, easier to understand.

Matt: It’s so interesting how music, which I think a lot of people think of as just a way to, um, entertain— or like it’s a very emotional thing— can be used in such a developmental… um, I wish I had a better word than ‘scientific’ off the top of my head, but you understand what I’m saying? Like it’s being used in this this other wholly unique way.

Kirsten: It really is and there— there is a very, like you said, scientific way to singing. How I kind of touched on— you change your position, you change your breath support, you change the way you articulate, um, and so you kind of use that to break it down and apply it to something else and then build it back up again.

Matt: And that’s also interesting that you mentioned from earlier— into our main conversation today— because he was using an AAC device. Let’s talk a little bit more about AAC. What is it? Do you want to, um, break down the acronym?

Kirsten: Yeah, absolutely. So AAC stands for augmentative and alternative communication. So augment means making something greater by adding to it, so supplementing. And alternative, obviously, is using a different method. So it just basically means that you’re using some type of device, or object, book, there’s lots of modalities to AAC. To augment/to supplement the speech that you do have or to be an alternative method if you do not have any speech.

Matt: Uh, I had no idea that there were so many categories for AAC. Aided and unaided, high-tech/low-tech, no-tech

Kirsten: Yup. I’ll kind of go through— I have, like, a whole— I had to write a whole paper on it. Um, and as I had mentioned to you when we were messaging back and forth about this, I did have the amazing ability and experience to be a research assistant underneath Dr. Janice Light, and she works at Penn State, in her AAC lab. And so I have a lot from her specifically because she really has made some amazing breakthroughs in the field. So Janice Light breaks it into four components for the purpose of AAC and that would be: to communicate one’s needs, information transfer, social closeness, and social etiquette. So really all the things we communicate for, that’s why we have AAC. And then we can break it down even further into the devices, and what exactly it is. So unaided communication is defined as use of some type of speech, gestures, sign language, facial expression, body language, um, to communicate. And then aided, of course, is exactly what it sounds like; you have some type of device or some type of object— or something— that you use outside of your body to help you with communicating. And then it gets broken down even further and there’s dynamic and static and all— (laughs) everything. You can really get overwhelmed with it. But you mentioned devices, so we’re gonna stick to devices. And the really cool thing with technology and how far we’ve come is that you or I hold a device in our hands every single day that is AAC and you don’t even realize it, and it would be our phones because we use texting, we use messaging, we use snapchat we use ticktalk now and these are all different ways that we communicate outside of just using our voices.

Matt: Something that I find, um, disappointing— something that’s a little annoying about the way that I think other people view AAC devices— is there is a tendency to think that someone using an AAC device might not, um, be as cognitively developed as someone else just because AAC devices take a longer time to use.

Kirsten: You’re absolutely right with that. I mean, that is something that is a stereotype that’s kind of placed on individuals who use AAC, but it’s absolutely not true. I mean look at Stephen Hawking: he had ALS and he used an AAC device— and he had it attached to his wheelchair and he is well known, super popular, super knowledgeable, and he was really only limited by the fact that he couldn’t verbally speak, and then once he had the AAC device there really was no limit besides, yeah, maybe you have to wait a little longer for him, or he has to pre-record his speeches or his messages, but that is definitely something that we do struggle with. And, um, we do kind of have to counsel families. When they hear, ‘your child’s gonna be using an AAC device,’ sometimes families hear, like, ‘oh my gosh my child’s never gonna talk.’ That’s just simply not the case. Especially nowadays, like I mentioned earlier, one of the components is augment and so that’s to supplement or add to, or make something greater, so absolutely people can talk and have their own voice. But sometimes it might just come out a little different, or it’s hard to understand, or it’s just easier for them to use the device to have more complex conversations.

Matt: I remember because my mom does a lot of work with AAC too— and I remember growing up when Ipads became, like, very much more common in our day to day, like, in schools for example. That was just such a breakthrough for her and for AAC in general— I mean, I know a very popular AAC device is a sheet with a bunch of images on it and you can point to them; and the Ipad effectively doing that but adding in voice or adding in you can scroll, I mean, I would assume that would make such a huge difference.

Kirsten: Yeah.

Matt: With these episodes, with these recordings, it’s always, um, I feel like I’m saying things that are very obvious, but I feel like they still need to be said, and I just think it’s important to address, like, that is a reality. And being patient with people who are using AAC devices is just, like, very important. They have things to say.

Kirsten: Absolutely. Absolutely. We actually experienced this, I’m sure Megan has probably told you the story, and I know you met the twin boys at ACRES, um, who use their devices on their Iphones. They first came to us without using their AAC device and they are pretty low, um, verbally; and we really didn’t know where their levels were at and we were really confused because mom was like, ‘yeah they had jobs in California, and— and they, like, they did all this stuff,’ and we were like, ‘we can’t even get them to like say yes or no back to us and we’re really struggling to relate to them,’ and we really, really advocated for them to start bringing their Ipods— and, um, I just remember the first time that they actually used it without even us prompting and the one of them, I was trying to tell a joke to, just kind of like, get some type of response, and he, I think, was just like, ‘no. All done.’ And I was just like, ‘all right,’ like, hey— he’s intentionally communicating and he’s there, and he understands me, um, and it was just we needed that AAC to kind of bridge the gap and make sure that, you know, he heard me all along. He just really did not like me so that’s why he didn’t—

Matt: he didn’t like your joke. (laughs) Well that’s what I think is so cool about AAC is the more I’ve learned about it the more inventive it is. I mean, it— it covers such a wide expanse of different ways of communication, uh, I was watching a documentary the other day and somebody had— uh, the head pointer they could use to point to stuff. They had cerebral palsy and they could also use it to paint, and it’s like, what a cool way to, like, adapt an AAC device to allow someone to communicate in so many unique ways, painting included. It’s amazing the spectrum that you can get with them— from just your hands, to an Ipad, to etc.

Kirsten: Yeah it is really neat. I think something that, um, I had learned through classes and watching videos that I thought was so cool is how adaptive we can really get with AAC. And it can be very complex, um, but it can be very simple, and so I watched a video, that they used a button which we call, like, it’s kind of like the ‘That Was Easy,’ Staples button, um, but it’s called a big mac and so it’s called a BIGmack button and you can, um, program them to say different things; and, um, I mainly see them a lot nowadays— I don’t know if you, um, I forget the account— but it’s a it’s an SLP that has a dog and the dog’s name is Stella and she uses BIGmack buttons that are programmed to say different words and the dog selects them to communicate with her. Which is really cool but they also can be used, I know, um, you know not everyone has their use of their hands or their arms and stuff, and so BIGmack buttons can be fastened to a wheelchair and you can use the side of your head to press it to say ‘yes’ or ‘no’ and all of that stuff. So it is really cool how functional yet diverse, and how adaptive, it can be.

Matt: Well that’s what I was going to ask, is, what’s one of the more— most unique AAC devices you’ve encountered? is that—

Kirsten: Yeah. Um, it’s— it’s kind of hard because they’re all so unique to the individual and so, um, I think definitely the coolest thing to experience was that I did, um, get to see a Tobii Dynavox being used. We had practiced this through the class at Penn State with AAC, to do eye gaze, so you don’t actually have to use your hands on anything. Um, it focuses and calibrates to your eyes, and it will track your eyes across the screen, and then you stare at whatever you’re selecting for, I think, three seconds. Um, and it’ll select it and that’s something that’s a lot harder than you think it is, and you’re calibrating a device to track your eyes and then you’re using that, um, and that was super, super complex, but so cool and there was just so much access to a lot of things because it’s a very high tech device so you can get onto the internet on that device, you can have your email set up, you can have text messages set up, you have pages, and pages, and pages, and pages that just keep going of language and options. I guess most unique as in, like, something not conventional, um, would actually be an experience that I had this semester working in the clinic. I had a little kiddo diagnosed with autism spectrum disorder and he was verbal and he did have some words, um, but a pretty limited vocabulary. And it was really hard to understand him sometimes, and so he would sometimes say he wanted the blue egg that we were working with and he would just say, ‘ooh, ooh,’ so you didn’t really know what he was saying. And mom was like, ‘yeah he has this PECS book that like his therapist once used, and they used it in school, but like, I don’t understand it, and it didn’t really work for us,’ and I was like, ‘okay PECS book is a form of AAC.’ And so it’s kind of a binder and it has velcro on the front and then inside there’s pages, and pages, of like, laminated pictures or line drawings with words on them, um, that you pull out and you can velcro to the front to create a sentence or a message, um, so she went ahead and brought that in for me and I spent the weekend endlessly cutting out these little squares and laminating and velcroing them onto pieces of paper to add to his book for him, and we didn’t necessarily use the book but we took out the phrase I wanted then I had, um, an activity that he loved with different colored easter eggs. And you’d open them up and there’d be some things— some little tiny object— and he loved opening up and guessing what the object would be so I pulled out a ton of colors and we used blocks like little, um, like, foam dice that I had and I stuck the pictures onto the blocks because I wanted him to say a three word sentence, but I also applied the picture to it, um, and so that was still considered AAC because he’s still using those blocks with the pictures on it to structure out a sentence and select; and so he would tap the block, um, corresponding to the word and say— so he’d say, ‘I want,’ and then we would practice with different colors and stuff. And I nearly fell on the floor the first day that he wanted my attention and I was focusing on the mom and the supervisor who was in the room having a conversation with me and he just very boldly was like, slamming the block and was like, ‘I want egg.’ (laughs)

Matt: That is like— I love hearing these stories of like, inventive ways of connecting with the people that, uh, you’re working with. That’s so cool.

Kirsten: Thank you.

Matt: It sounds like you spent a lot of time cutting out, um, squares.

Kirsten: I did spend a lot of time, um, but when it comes to my clients, and I think any SLP can relate, we’re willing to go above and beyond to make sure that they have means to communicate— and he was just one kiddo that was really struggling and weighing heavy on my heart, that mom was just kind of, at like, a tough block in her road, where she was like, ‘I just can’t communicate with him fully and he wants help and I know he wants help but he’s not communicating it,’ um, and so that was something that we used that she was starting to be able to use at home. Just because he, it was something that included all sentences, he could see it he heard me model it, he could touch it, and feel it, um, and it was a visual to him, and so it was helpful for him to break down a sentence, which can be overwhelming, to three different parts, and like you said, it’s— it’s unique. And it’s functional, and so that’s how cool AAC is.

Matt: That is really cool. And it kind of brings up another question I have, which is how do you, um, how do you like figure out the best, uh, type of device to use for a certain person? Like what’s that process look like? Because it sounds like he’s not using an Ipad.

Kirsten: Um it is— it can be a long road, um, so when you initially take on an individual client or patient onto your caseload, um, you obviously go through a plethora of assessments. If needed, um, if they’re not diagnosed with anything, or if they don’t have kind of a baseline of what their skills and abilities are, um, and where their strengths are, you start to do a ton of assessments. And so with AAC that can kind of look different, um, but it’s kind of, almost, like a trial and error period. So it’s a holistic approach. You kind of look at the family, and you look at what they need, you look at the individual and what they need, or what might work best for them at the time. So this little kiddo that I had shared about, he absolutely can use an Ipad, um, but mom had said he really wasn’t there and he could verbalize when he wanted or needed something, you just had to kind of get used to the sounds that he was making for certain items so he didn’t really need something super high-tech because we were just working on a lot of core vocabulary and just carrier phrases like the ‘I want’ and then again, trial and error, and this is something that, um, we get trained on through school. Especially going towards the higher-tech devices, um, you actually go ahead and write grants into different companies that make these devices, so you go ahead and write a grant in to Tobii Dynavox and you say, ‘hey I want to try out this device with my client, will you send us a device, and kind of grant us access to it for a specific amount of time to see if it’s the right fit for this person,’ and so it can be a long process if you’re trying out different devices and stuff, and sometimes, like with my little kiddo, he didn’t necessarily need something super complex at the moment. It was just something that we were using to augment his communication and to really just structuralize, um, what we wanted. Which was ‘mean length of utterance,’ so we wanted him to create more sentences that were longer than just ‘want’ or ‘help.’

Matt: Cool. I think that’s really interesting. I have this as my last note… it just says, ‘any other interesting stories from the field?’ is there something that stands out to you that you found was particularly cool or, um, I don’t know— affirming in some way, or life-changing, maybe?

Kirsten: Um, I mean a lot of— a lot of the stuff that you learn once you’re seeing clients, um, or out on externships, is just so different. It’s so nice to learn hands-on. And I think my most recent and my biggest accomplishment that was super affirming, like, ‘yes. Okay. I know what I’m doing, and this is why I’m here, and this works,’ was when I had that little kiddo and we used the blocks and it was just something so simple but it was such a huge breakthrough. Um that he was all of a sudden initiating, and he was using his voice, and it was clear, and he had the words there, he just needed to get them out. Um the most rewarding was that mom really saw how much he was progressing and she looked at me with, like, tears in her eyes, and was like, ‘oh my gosh, like, he can do it, like he’s fully capable of communicating with me.’ It just took a little creativity. And she was like, ‘I just need you to stay in the area. Can you work in the area? Can I hire you? Can you reach out to me once you graduate?’ and so I think just kind of seeing the kid breakthrough and then mom be so grateful was just kind of affirmative of like, this is why we do what we do, and this is why, um, I love something that facilitates the creativity, and uniqueness, and everything that we do.

Matt: Yeah that’s so cool. It’s— you’re basically giving someone a voice, which is really incredible.

Kirsten: It is. I think you make a really good point— we don’t even realize it. And we don’t even realize how much we rely on just our voices or our phones, or whatever we may use to communicate. Um, I guess kind of adding on to your last question, I do… like, a personal experience that I was just like, ‘AAC is just for everyone, and it works, and you can tie it in,’ um… but unfortunately this summer my grandma fell really ill and she was in the ICU and when she was intubated, um, obviously that causes trauma to your throat and stuff. And then when she woke up from intubation she was trying to communicate and just couldn’t. And so my uncle had come home and they were just like, ‘I don’t know what to do, I don’t know what to do,’ and I was like, ‘give me your Ipad, we’re downloading GoTalk NOW and we’re just gonna have simple buttons, like, ‘I want dad,’ ‘I need a nurse,’ ‘help,’ ‘I’m hungry.’’ Um, and unfortunately she wasn’t able to use it because they had gone back in and she declined and eventually passed away, um, but I think the breakthrough, with just seeing how much AAC affects people, is just… anyone can really use it. And you know, my grandparents, who don’t know technology, my pap was looking at it and I was teaching him how to use it and he was just, like, so overwhelmed, but then I heard him on the phone that night with his friend and they were asking for updates and he was like, ‘yeah my granddaughter made, like, this this thing on the Ipad and there’s buttons, and you like, press it, and it talks to you,’ and he was like, ‘I don’t really know… but it’s so cool, and like, it’s so fascinating, like Carol can use it, but like, you also use it for kids who, like, don’t have voices.’ Um, it was just cool to see, like, the crossover. And just the connection, and the light bulb go off for them, and how much we can really use AAC in all settings. So maybe if I ever do research one day, I think it’ll definitely be like, maybe, training for simple AAC use and, um, like different medical floors— like the icu where you do have patients who are intubated. Um and they could totally benefit from just an Ipad that you can pull up with an app that has simple phrases on it. That would really help bridge that gap of communication.

Matt: Yeah absolutely. I think, um, I just started learning sign language a couple of months ago and it’s such a, um— I’ve never had to use it, uh, in any context but it’s such a cool and valuable thing to just have on hand— literally— um, because you never know, right? And I kind of I think it’s— it’s kind of lame, honestly, that schools aren’t teaching sign language in, like, a very basic way as a part of their curriculum because I think it would be great if we all had some basic understanding of this language that can be very universal and can include a lot more people who don’t have the option to use their voice.

Kirsten: Yeah I 110% agree with you. I— my mom used signs with me when I was a baby and we just used simple signs like, ‘more’ and, ‘cookie’ and I use that with my clients, um, and actually have family who’s deaf and so that’s the reason why I kind of started learning sign language, because, um, no one learned sign language to communicate with them, so no one really ever communicated with them until we had more access to technology. Um, and messaging, and um, it does come in handy. I mean, I was at my grandma’s funeral and it was her— it’s her sister who’s deaf— and so I was communicating with my great aunt, and it happened so fast that we didn’t even think to bring an interpreter, and so I met her at the door and I signed to her— and it was the first time seeing her forever, and I signed, ‘hello, I’m so sorry, it’s good to see you,’ and she just sobbed, because she was like, ‘you can sign,’ like, ‘you can communicate with me,’ um, and it is something so important. I’ve worked at restaurants and I’ve had people come in and ask for a table in sign language and I was able to reply back in sign language and it’s life-changing for them. That people know.

Matt: Yeah. No, that’s amazing. I love those videos every year of like a Santa Claus, um, and the— yeah you know what I’m talking about— just, yeah I think that’s super cool.

Kirsten: Oh yeah. that’s— those are the best; I instantly start crying when I see those.

Matt: Awesome. As somebody who knew a lot less coming into this, I feel like I’m coming out with a pretty good understanding of AAC and some of the ways that it’s used. So, I mean, definitely good job.

Kirsten: Thank you. I’m really glad that, um, this was something that you were so open to and I’m glad that you brought this up because I was like, ‘oh man I love AAC! Of course I want to talk about it,’ um, but yeah thank you so much and you came prepared with a lot of really good questions and I think those are good questions that, um, a lot of people have. So hopefully we kind of can use this to answer some of those questions for other people and it has the same effect. Hopefully.