EPISODE 247 [INTRODUCTION] [00:00:00] MD: Okay, everybody. In the latest edition of gratitude, I am incredibly grateful for some of the folks that are behind the scenes and pulling this podcast off. People that y'all don't even know about. So, I am talking about none other than Yoomi Kim and Soomi Chang, because these two Ð They are identical twin sisters, but these two women, they put everything into action. They help us get the contracts together for the speakers. They help edit all of these podcasts, all of the little intros. Every single time we get together with them, they leave Erin and I with so much heart, and so much joy, and so much laughter. Also, they made sure that we stop to eat, that we stop to hydrate at every single convention we go to, and I think [inaudible 0:00:59] the way that we mother everybody else. It's nice to be on the receiving end of that much love and support. Yoomi and Soomi, today, just so you know, we are incredibly grateful for everything that it is that you do. Also, before I forget, you're really, really going to enjoy today's episode because Dr.ÊAmy is brilliant. I definitely have booked her for additional things in the future. So, stay tuned because we have an AAC Awareness Day coming up in October and she's going to come back and guest speak on that. So yay, enjoy. Hi, folks, and welcome to First Bite: Fed, Fun, and Functional. A speech therapy podcast sponsored by SpeechTherapyPD.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP, CLC, the All-Things PFDs SLP. I am a colleague in the trenches of home health and early intervention, right there with you. I run my own private practice, Heartwood Speech Therapy, here in Columbia Town, South Carolina, and I guest lecture nationwide on best practices for early intervention for the medically complex infant, toddler, and child. First Bite's mission is short and sweet: to bring light, hope, knowledge, and joy to the pediatric clinician, parent, or advocate. [0:02:40] EF: By way of a nerdy conversation, so there's plenty of laughter too. [0:02:44] MD: In this podcast, we cover everything from AAC to breastfeeding. [0:02:49] EF: Ethics on how to run a private practice. [0:02:52] MD: Pediatric dysphagia to clinical supervision. [0:02:55] EF: And all other topics in the world of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts. [0:03:04] MD: To break down the communication barriers so that we can access the knowledge of their fields. [0:03:10] EF: Or as a close friend says, "To build a bridge." [0:03:13] MD: By bringing other professionals and experts in our field together, we hope to spark advocacy, joy, and passion for continuing to grow and advance care for our little ones. [0:03:24] EF: Every fourth episode, I join them. I'm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective; that of a new-ish clinician with experience in early intervention, pediatric acute care, and non-profit pediatric outpatient settings. [0:03:45] MD: Sit back, relax, and watch out for all heart's growth and enjoy this geeky gig brought to you by SpeechTherapyPD.com. [DISCLAIMER] [0:04:00] MD: Hey, this is Michelle Dawson. I need to update my disclosure statements. My non-financial disclosures, I actively volunteer with Feeding Matters, the National Foundation of Swallowing Disorders (NFOSD), and the Dysphasia Outreach Project (DOP). I am a former treasurer with the Council of State Association Presidents (CSAP), a past president of the South Carolina Speech Language and Hearing Association (SCSHA), a current board of trustees member with the Communication Disorders Foundation of Virginia, and I am a current member of ASHA, ASHA SIG 13, SCSHA, The Speech Language Hearing Association of Virginia (SHAV), a member of the National Black Speech Language Hearing Association (NBSLHA), and Dysphagia Research Society (DRS). Additionally, I volunteer with ASHA as the topic chair for the Pediatric Feeding Disorder Planning Committee for the ASHA 2023 convention in Boston. I hope you make it out there. My financial disclosures include receiving compensation for First Bite Podcast from SpeechTherapyPD.com, as well as from additional webinars and webinars associated with Understanding Dysphasia, which is also a podcast with SpeechTherapyPD.com. I currently receive a salary from the University of South Carolina in my work as an adjunct professor and Student Services Coordinator. I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders, as well as compensation for the CEUs associated with it from SpeechTherapyPD.com. Those are my current disclosure statements. Thanks, guys. [0:05:58] EF: The views and opinions expressed in today's podcast do not reflect the organizations associated with the speakers and are their views and opinions solely. [EPISODE] [0:06:06] MD: All right, everybody. Today is an outpouring of mischief, mayhem, and merriment post-ASHA if I ever heard of such a thing. Because that's how it works, right? You meet amazing people, and then amazing people know amazing people. So, on a Friday night at ASHA, almost a year ago, we got together with our dear friend, Alison Beam, and Alison Beam brought with her these two amazing women. One of them is the lovely lady that we're interviewing today, Dr. Amy Sonntag, and we got busy talking about AAC, and then the world, and then life, and there was joy and mirth. I instantly fell in love with her light and her spirit. After an appropriate time, and Michelle's anxiety had passed because this is an established fact, this [inaudible 0:06:54] speaker anxiety, I reached out to Dr. Amy and asked her to come on the podcast. And as luck would have it, it turns out, she also knows our Rocky. Talk about like a circle of love, right? She came on, but y'all, she has so much advocacy and does so much in the world of AAC. and she's on a board that I didn't even know existed, and you have to tell us about that. Like all these things, but like, we're talking about AAC vocab for the big kids, which is really, really cool about transitions for teenagers. I got to be honest, it makes me a little nervous because Bear said the word suss the other day, and I didn't know what he meant, but it means suspicious, I think. [0:07:38] AMS: I don't know. [0:07:39] MD: Yes, it was slang. I was like, "What? You're eight years old? What are you talking about, suss? What is this?" Then I was like, "Christian, is this a drug? Do we need to be worried?" He was like, "Oh my god, Michelle." There we are. Hi, Dr. Amy. Thank you for coming on. [0:07:52] AMS: Hi, Michelle. Thank you so much for having me. It's so fun to just meet really amazing people who know amazing people. When I heard Rocky Garcia on, one of my dear, dear friends, and cohort members from our SLPD program, I was just like, "Oh my gosh, this is just going to be so much fun." So, you are my first podcast, so thank you. [0:08:12] MD: Yay. I promise we won't bite. I mean, there's that. I did have to flip dog one time when she was a puppy and nipper, like on her neck, but that's because she got me. So we were like, who's the alpha female in this house? I'll be honest, the 14-pound Miniature Schnauzer really is, but like, I digress. Okay. We always like a good backstory. So, take us from the beginning. What made you want to be a speech pathologist? And tell us about where you are in the world and doing the things. [0:08:45] AMS: Thank you for asking that. I owe a debt of gratitude to a friend I grew up with named Carrie. Her mother and my mother were really good friends. Where we lived was really close to where they lived. Carrie was a year or two younger than me and was born with the umbilical cord wrapped around her neck, and was born with severe cerebral palsy, so she had very limited mobility. This is back Ð I'll just own my age. This was back in the seventies when we were born. Technology wasn't where it is now. But growing up with her, I always grew up with someone who had a significant disability in my life, because of course, our moms were always together because you need your tribe, you need your friends, you need your people. So, I got to be with Carrie a lot. I got to see how she lived in the world, and it was just another person. I remember growing up, I realized, when you start to think about what you want to do, I want to work with people like Carrie. Her mother was wonderful and would let me tag along to PT, OT, and speech sessions. They were all really interesting, but it was the speech therapists that really found ways that Carrie and I could communicate with one another, or that Carrie could communicate. And then, therefore, her mom would teach me how to do it, and I was like, I need to do that. I want to work with people like Carrie. At the time in the disability world, we've come a long way, we have a long way to go. But we've come a long way in various careers other than rehab professions. But at the time, it was speech-language pathology for me. So, I started Ð and it was a little bit Ð I got interested in articulation, and I got interested definitely language. It was all really interesting to me. But in my graduate work, and in my career, I kept coming back to, this is what I love, and this is what I want to do. As I practice, I keep getting people, and I think it's because the universe finds the people you need in the people who need you. I have found that the majority of my caseload along the way has almost always been people with pretty significant disabilities. They may need alternative access methods, or their communication can be really complicated, even if it is touch access, and figuring out how to communicate. I've been in my career 26 years now, and I don't think a week goes by that I don't send a little thank you in my mind, in my role to Carrie and her family, Connie and Don, her parents, for just letting me be part of that. Because I think about where would I be, and what would I be doing if it weren't for her. It's just Ð it's a really, really special place to be and to remember her. I think because of that, I have a lot of connection with my clients, and that it's not just about me, it's about them, and what they need, and what they want, and really listening to them, and knowing there was this larger family context. We need to put this all in. [0:11:49] MD: Empowering the caregivers, yes. My husband has a special needs brother who has CP, who's older than him, born in the seventies. Microcephalic, critical vision impairment, ASD. all the things. [0:12:03] AMS: Wow. [0:12:05] MD: The greatest Transformer and Power Ranger collection of all time. [0:12:09] AMS: She was Mickey Mouse. [0:12:10] MD: Yes. I'm like, he could probably retire by selling Hot Wheels, just saying. And the man loves him some bright, bold patterns and colors. So when he gets Ð because you can see them, right? When he gets dressed for his work, which is like his adult day program, he always has a polo shirt and khakis. My father-in-law laughs and says, "He looks like a perpetual easter egg." Also, well, I tell my husband, the man can grow a thicker beard than my husband, and so Ð "I'm too furry, you must shave me now." Like it's just Ð but it's great. Christian is like, "Yeah. Yeah." But yes, this is our joy. This is our life. Right? How blessed are we that we get to do what it is that we love to do and are perpetually inspired? [0:13:00] AMS: Definitely, definitely. I've been inspired by so many of my clients, and I always Ð as I'm working with somebody, I'm like, "Oh, I am doing this because of this client I saw before." Like, "Oh, I now know this because of this other client,Ó or "I now think about this a little bit differently because of someone else." There is that Ð I think about this and talk to my students about this a lot. Oh, I just realized I didn't answer the second part of your question. I think about this a lot as I work with students in the prongs of evidence-based practice. One of those prongs is your client, and their story, and their environment, and how important that is, and how we need to connect that to the research. But we also need to be sure that we are looking at not just the scientific evidence, but where is our client, and then where is our expertise from what we have done in the past, and what we have seen. [0:13:55] MD: Yes. Okay. You're talking about your students. You have come a long way from being a communication ally, as a tiny human to now, but talk to us about what is it that you do and how did you get there? [0:14:11] AMS: I am currently a clinical faculty member at the Ohio State University. I think we're contractually obligated to say Ôthe.Õ So I always chuckle at that a little bit. But at the Ohio State University and the Department of Speech and Hearing Science, and then I have an appointment in the College of Health and Human Services. I teach coursework in augmentative and alternative communication in our department and in an Assistive and Rehabilitative Technology Certificate Program that OSU launched a few years ago. This Assistive and Rehabilitative technology program, ARTC, is for multidisciplinary professionals to take coursework in assistive technology. There's an assistive technology course and a foundational course. Then, they can choose to take three of four or five other courses. One of those is AAC. In doing that, I not only get to teach masters level speech-language pathology students about AAC in one course, where I can really focus and design that around the SLP and the SLP role. But I now get to teach, and I'm just loving this so much, a multidisciplinary course for AAC. Where I have occupational therapy students, physical therapy students, audiologists, teachers, some practicing SLPs who are out working in schools, or in hospital settings Ð [0:15:37] MD: Is that online? [0:15:37] AMS: It is a completely online course. I can make sure Ð I bet you do some show links, and so I can put Ð I'll give you the link to that. The course is designed to have a certificate, to show your employer that you have an additional knowledge base of a systematic organization of assistive technology knowledge. But it's also designed to help someone prepare for and take the assistive technology professional examination for RESNA to actually have your assistive technology professional certification. That is an actual certification that gives you some additional letters after your name. There is a test that's related to that, and the test is very multidisciplinary. The ARTC program is designed to not only give you a foundation but, me as an SLP, if I need to take that exam, I don't know as much about wheelchairs, so I can take the course on seating and mobility as part of the ARTC program to be ready to pass that part of the ATP exam, which is through RESNA. [0:16:42] MD: Literally on my bucket list for 2024. [0:16:46] AMS: Oh my gosh. That's amazing. [0:16:47] MD: Also, and again, folks, my face is frozen, because of course, it has Ð and it's me writing down the notes. Apologies for the frozen face. But yeah, that's BCSS 2023. I don't know if we're going to make it, but we're trying. Then, ATP 2024. But we have to put Ð we have to claim this in the universe. So yes, okay. That's amazing. Okay. We have to sidebar afterward, because now I have 14 questions on that. I know, we need to get to the questions, but I have one more. You're a secretary on the board of an organization I've never heard about. What is this thing? [0:17:23] AMS: I am so sorry that you've never heard about that because that is telling us that we know this, that we need to continue to expand our membership. USSAAC is the United States Society of Augmentative and Alternative Communication. It is the North American branch of ISAAC, the International Society of AAC. It's actually, really, it's the United States but I think we do get members from Mexico and Canada. There might Ð I apologize, there might be its own organization in South America, I should know that, but I do not know all the international organizations. But one of the things that we are really committed to doing is promoting AAC awareness, use, and knowledge. It's been very geared towards people that work in the field of AAC in a multidisciplinary perspective as well as AAC users. The past president of USSAAC is an AAC user, Yoosun Chung. The current president is Amy Goldman, who is a longtime professional and ally in AAC. She does not use AAC, but our upcoming president is an AAC user, Tracy Rackensperger. She is a faculty member at another university. I'm drawing a blank on which one right now, I apologize, Tracy. Our upcoming president is also an AAC user. We're really looking at getting the voices of our membership, expanding our membership for people who use AAC, and meeting their needs. There are a couple of wonderful things that this organization does. One is a new speaker connection, where you're going to love this, based on what you told me before we started recording. If you are teaching an AAC course or you want someone who uses AAC to come talk about their experiences, there's a speaker connection aspect of our website, section of our website where you can get connected to someone who uses AAC to come to your class, to come to your organization, and talk about what it means to use AAC in their journey, or whatever you and that speaker determine you think is a good topic. [0:19:33] MD: I'm on their website right now, and the upcoming president is at University of Georgia. This is phenomenal. [0:19:38] AMS: It's really exciting. I was really honored to be elected to be on the board and be the secretary, and learning so much more than I knew before about what they did. The other big thing that we do that I think is important is, we had really high winds yesterday in Columbus, and they're coming, we have an initiative called the Disaster Relief Committee, and we are really working towards helping people who need AAC be able to communicate in the event of a disaster or an emergency. This initiative really grew out of the needs that people had from some of the major hurricanes and then some major flooding. As we continue to experience climate change, those big weather events are continuing to happen and happening in more places. So, we will help people who've lost their AAC equipment, help them get new equipment. We will help them be ready for that disaster or emergency and educate them on how to do that, and we will also provide low-tech communication board options on our website as well. One of the best things that we've done that few of my colleagues worked really hard on in USSAAC is a disaster relief text-based preparedness course. It is a seven-day text-based continuing education opportunity that will walk someone through how to be ready in the event of a disaster or an emergency. I'm in a research group with other USSAAC members. We are so close to publishing a pilot study we did with implementing this toolkit, but that is available for people at no cost on the website as well. I can definitely give you that so people can link to that. It's a wonderful course where you get a message each day, and it will tell you things to do, link you to more resources, forms to fill out, and how to be prepared. [0:21:28] MD: This is amazing. Well, one, if I could make the request now, I would be honored to have this organization on the podcast to talk about their work, and to raise awareness. [0:21:38] AMS: Oh, we would love that. Oh, that'd be fantastic. [0:21:42] MD: Yes, yes. Sidebar conversation number 47. That is the perfect segue that transitions into vocab selection. Because if we're talking about teenagers, then we're talking about that transition period in their lives. We have AAC users that will be independent living. We hope this is, or again, putting this in the universe. Folks, if you're in South Carolina, there's an organization called Able South Carolina. Their entire mission is to make independent or accessible living for individuals with disabilities, which is an amazing nonprofit. I want to shout them from the mountaintops. That vocabulary would not be part of a normal core, I would anticipate. I feel like that would be some fringe. That can be scary, especially for folks that are not used to getting into it with AAC. Oh my gosh. I have Ð Amy, this is phenomenal information. I'm so happy. Okay. Talk to me about vocab selection, and then you and I seriously have to talk later about USSAAC or USSAAC? [0:22:52] AMS: USSAAC. [0:22:53] MD: Okay. Yes. [0:22:54] AMS: Vocabulary selection is near and dear to my heart, because how do you communicate without vocabulary? Prior to my current position, I've had the privilege of working in private practice, in a school setting, pediatric hospital setting, as well as working as a consultant with an AAC manufacturer, and now, in a university setting. Vocabulary is always the topic. I think there are waves and shifts in terms of trends with anything. When I started in the field, graduated with my master's in the mid-90s, and technology wasn't near where it is today. We weren't walking around with computers in our pockets, and everyone with this high-quality screen in front of them all the time. Really the main way that people could have a good word-based vocabulary was with like a min speak system or unity or something like LAMP, and really focus on core vocabulary, and that is hugely important. But there was only one company that had it. Now that technology has really shifted, and we have so much better technology, almost every AAC company is like, "We have core. We have core,Ó and that's fantastic. We need core. Core is definitely what we use to put novel sentences together. With anything I say throughout this, I don't want anyone to think I don't believe in core vocabulary and that approach. But I think we've shifted, and I worry that we're shifting as a field to this dichotomy of core vocabulary being the only approach, and the only thing, and if you're not solely focused on core, you're doing it wrong. My current work, because of services for older teens and young adults are so much harder to find for those people who need AAC. I'm getting clients who, they may have had an AAC device or they're coming to me at 22, 23, 25,16, never had an AAC device. I think we can't just start with core sometimes with those clients. I think we need to really look at all of the approaches that are available to us and really match all of the features and technology that is in AAC devices and find the right mix for that particular client. Because if we don't, I think we missed the opportunity for someone who's 16, 18, 20, maybe even 12, who, it's their first time using AAC. They've had a lifetime of however long that lifetime has been of not having successful communication. They might have had a lot of barriers that they face to even communicate some basic feelings to their parents, and believe that they can communicate. I think we need to give them a way to have that success and that understanding of what communication can really do, then sometimes, back into building in that language development. We don't always get kids on our caseload at two and three, where we could start AAC, core vocabulary, and language development. If we do, that is phenomenal. But when we don't, how do we meet those needs so that they buy into AAC? [0:26:07] MD: This is the realm that I walk. I work with the littlest ones, right? There are so many barriers. In March, I spoke at the South Carolina Assistive Technology Expo on AAC for early intervention and caregiver empowerment. It was on that piece, but you can do it, and how Ð when I plug in, one, just trying to explain to parents that like this screen is okay because there's that fear of screens, that's a huge barrier, right? But I like to focus on mad, and I know that sounds crazy. [0:26:42] AMS: Not at all. [0:26:43] MD: You'll be a mom. Somebody babysit a two-year-old and tell me their emotion 97% of the time and they're angry. They're the Hulk, right? Because they have these Ð and what cracks me up is, especially for the kids that we treat, and not treat, but like because we work with, like they have this notion of what it is they want to do, and how they want to play. But sometimes, their bodies and their communication can't execute their master plan, right? Like I have this one little girl, and she loves to do fine motor activities, and her OT loves her, right? Because she needs fine motor skills, but she thrives in arts and crafts, but she gets frustrated because she can't do what it is that she wants to do. So she would resort to hitting, which is perfectly acceptable two-year-old behavior, right? We put mad on her LAMP, thank you. And oh my God, now she's picking up on when other characters on her TV shows are mad, and like telling us mad. But like, I know that's a fringe word, but this is my hypothetical question. At what point in time does a core word turn to fringe? Or there's a fringe word turned to core, right? Because that's important for her. [0:27:59] AMS: So many things to unpack there. Oh my gosh, I love it. I was just having part of this conversation with a couple of my students yesterday. Let me tell you, the future is bright. We've got some amazing young clinicians that are working, studying, and just giving everything they have to learning about AAC. I'm so fortunate that every single student in our program will go through the AAC clinic experience, and that they will get exposure to this. I think that alone is going to make things better. Yes. So thinking about first those young kids, definitely, it's a great time to really teach that language development, and what we teach is really important. Yes, mad is fantastic. The fact that you're doing something that's not just requesting like crayons. [0:28:48] MD: No. [0:28:49] AMS: Even if you're doing color and want, like those are good things, but I think we have to expand that and live in that moment. I think we need to look too, and this is another place I worry. The field is becoming Ð the AAC practitioners are becoming a little too this camp and this camp, there's a lot of research showing the benefit of using visual scenes with really young kids. So, a visual scene being a photograph or a picture that will help establish joint attention because kids love to look at themselves. I mean, thatÕs what they love to do and how adorable are they? Yes, it's one of my loves. I think it's kind of funny that I ended up now with mostly teenagers and adults. But we can do both. We can get a visual scene in there, establish some joint attention, get some connection between that child and the speaker, and then still shift into using LAMP and core vocabulary. I don't think this is an all-or-nothing thing. This idea of when does a core word become a fringe word? Well, this is just fascinating on so many levels. So core and fringe has been the vocabulary that we have used to talk about these words. Your core vocabulary, there are quite a few lists in studies of what constitutes core vocabulary. They vary a little bit, but they're pretty consistent. I, personally, even if the word mad isn't on a core list, I feel like that's a really important word, and that's something we should add. To me, I look at fringe words as words that are fleeting. For me, like dump truck. I don't use the word dump truck very often. That's really fringe. It's a noun. Unless there's a lot of construction going on, and then I'm seeing Ð I'm not talking about a dump truck. Coffee is officially a fringe word, but it's not for me. [0:30:42] MD: I was going to say, but is it Ð because for me, that is a core vocab word. [0:30:46] AMS: Exactly. Exactly. That is something Ð and I joke with my students when I'm teaching. Coffee and different types of wine, theyÕd better be on my communication device if you run across me someday. Make them easy to access. I think there's definitely that we need to consider like family names. Those are core. Those are absolutely core words. There's some newer research that's coming out that is Ð it's interesting. Sometimes it's talked about, like, "Oh, this is not core and fringe,Ó but I really think it's just a new spin and kind of a really functional spin on core and fringe. Because a lot of the Ð I don't want to say controversy, but maybe concern about core vocabulary is this idea that, "Well, they're not really the first 50 words. They're not really in those first 50 words that kids acquire." We can argue the research on that, in which study, and what's going on. But if we look at the language development literature, it talks about content words and function words. So content words are nouns, and verbs, and adjectives, and adverbs, and prepositions, and there aren't a lot of nouns in true core vocabulary, but nouns are important. So coffee, wine, Netflix, those are things Ð [0:32:01] MD: You mean the perfect Saturday? [0:32:04] AMS: Exactly, yes. Peanut butter, like that's Ð I love my peanut butter. I mean, those are going to be words that I want. They're my words, and they're used more in that early spoken language. Then you have function words that perform more of a grammatical function, pronouns, determiners, and auxiliary verbs. Pronouns are important, and they help finesse your language. I'm working on them with a client right now, and we're trying to see how much can he really figure out these pronouns. And then we discussed, but how much does it really matter if he can say the names of the people around him? But we do want him to have that ability to have a way to reference someone who Ð we haven't yet thought to put in his communication device, where it's like determiners. These are core words. This, that, those. Those are really important words. I want this, I want that. [0:32:57] MD: If you're listening, and you're an EI SLP, how many times does the mom say, "Do you want this or do you want that?" when they're talking about snacks or mealtime? This and that are huge, hugely empowering for being, because Ð sorry, you pulled a trigger. I once had a colleague, tell me Ð well, we were working on Teddy Grahams, and goldfish crackers via PECS, and he refused to participate, so he's not ready for an AAC device. I was like, but what if he doesn't want Teddy Grahams or goldfish crackers, and he wants something different, and he wants something over there or that one? It boiled down to a funding issue where the school district didn't have funding for AAC devices, but they didn't know that there were alternative routes. Once they went there in the conversation, like the whole Ð it completely flipped, and they got on board, but it was just very Ð [0:33:52] AMS: These function words, they emerge, they're not in the first 50, but they emerge after the first 50 words are acquired. I think we just need to think about when it makes sense to start to introduce these types of words, and then look at it from a language development lens. I don't ever want us to be so it is one way or the highway unless we have a lot of research to back that up. This is what needs to Ð we need to do and only need to do. I think the biggest thing in AAC we know about that is aided language stimulation, model, model, model, model without expectations. I love a systematic review that's been done on that by I believe, O'Neil, who did a systematic review meta-analysis on that. Basically, she's like, "Yes, it's done a lot of different ways, and they all work. They're all successful, so do it.Ó That's really important. O' Neil, Tara O'Neil I believe. [0:34:49] MD: O'Neil, okay. I'm writing this down. [0:34:50] AMS: Yes, I can send you the article. [0:34:52] MD: Okay, good. Because I never know if O'Neill is the I before E or if it's the E before I. I know that's Ð I can't spell and so Ð also, I feel like the reason I love AAC and PFD is they're both so new. And because the evidence is still kind of in its infancy, especially with these, like the video screens that you were talking about, the picture screens that had the words interactive. I just learned about those less than six months ago. Like didn't know that that was an option, because the trial devices that I have access to, they don't have that on there. But like, I don't know about these things, because home health is isolating. This is why we do the podcast to make this less isolating. Yes, continue. [0:35:36] AMS: Yes. Well, I think this is one of my concerns about LAMP, and I think LAMP has a wonderful vocabulary. Please, no one, please hear me saying that it's bad. This is the approach, this motor, and it's a good approach. It's a really good approach. Motor planning is good. We don't have enough research on motor planning. We absolutely don't have enough where the research is actually done on people with disabilities. There's been a lot of pilot studies that have demonstrated that with neurotypical adults this works really well and it makes you faster. But if that's all we have on a system or a set of words, we lose a lot of ability to make quick connections, or show someone, and talk about a picture on your screen. LAMP on an iPad doesn't have the capability to do a visual scene. I think there's some beauty. I mean, how often have we done something where we show someone a picture? I just sat with my nephew who's dealing with some medical things, and the doctor would come in, and he would have a picture of something that he needed to show the doctor, and he's pulling up the picture and talking about it. That's a real medical functional way to use it. But think about our vacations, and he was powerlifting, and he had this picture of a 17-year-old buff kid, and he showed that to the doctor. He's like, "Look, look how much weight I lost." But I know he's also showing it to his friends and like, "Look at me." [Inaudible 0:36:58] I mean, we use pictures to do this now. I mean, we are almost all walking around with these computers in our pockets, and so I think we need to do that. There's newer research on using video visual scenes to look at successful workplace transitions that you can video someone doing the steps of a job. And then they get to that step, and they watch the little video clip on their AAC device, and then they say the things that they need to say. Now, it's not generative language. Do we want generative language? Absolutely. But if it gets them employed in the community, makes more people see what AAC can do, then they see the limits of that too, and then they want more, and then they support the person to want more. Hey, we want to know about your weekend. What can we do to help someone do this, and how can we help this person? The person then becomes more motivated, hopefully, to connect with other people because they've had those successful communication attempts, the other domains of communication and communicative competence that were added. So not just, which Ð theyÕre important, linguistic, operational, social, and strategic. They are important, but really getting at those psychosocial factors, those motivations to communicate people's attitude about AAC, that communication confidence, and that resilience. We all fail. So how do we pick ourselves back up, dust ourselves off, and keep trying? [0:38:24] MD: Oh my God. We're doing a part two. Okay. Next thought, so what I have access to, I love Talk To Me Technologies and Control Bionics. They're the two that I have partnered with because they do send me devices for free. I love that they have access to different communication boards and communication programs embedded on. Then Control Bionics, with theirs, I have the Ð oh, bloody hell. Lane, you're going to kill me. Their EyeGaze one that just went on Zuvo? No. [0:38:52] AMS: Oh, I think it is Zuvo. [0:38:54] MD: Is it Zuvo? But is that with Talk To Me or Control? I'm doing a terrible job here. [0:38:58] AMS: Oh, that's Talk To Me Technology. Oh, I just got the email about the EyeGaze one from Control Bionics, and I'm like, "Oh, going to call my rep." [0:39:06] MD: Yes, because I have one of theirs. But what I love about it was that it has interactive games on the device. I'm probably preaching to the choir here. But wouldn't it be amazing if on these designated trial devices, especially for the ones with the patients, wouldn't it be amazing if we had multiple programs to trial such that they can flip back and forth between, and have the insurances pay for the multiple? Because I have a problem if a child is using multiple modalities to access communication, but insurance is only paying for one. [0:39:44] AMS: Yes. I think funding AAC could be its own, yes, its own thing, I did an AAC eval recently for a very severe cerebral palsy, uses EyeGaze, but is completely cognitively intact. And you don't need to be to use AAC, he just happens to be. In his home, he has what I call mission control. He's got like multiple screens around him. He uses his AAC device to write emails, and he uses Unity 144. So a pretty advanced program with word-based vocabulary, and he's super fast. He uses that to write emails, to program websites, and to help the PRC-Saltillo create different page sets for computer access in their devices. He can't get the computer side of his device funded, they won't fund that. But that's the majority of what he does with his communication device. Now, thankfully, it doesn't cost a lot out of pocket to turn that functionality on when you have a funded device. But I think funding needs to catch up with how we really use technology. We all use multiple systems. I was in search of Ð this is another place, Alison Bean and I, we love to geek out about is like productivity tools, and like how we keep our lives organized and keep track, and then how we fall off of our systems and come back. But one of the things I was always in search of was the perfect productivity tool that would do everything I needed. I came to the realization that that does not exist, that I have different types of systems I use for different things, and I work to integrate them as much as possible, even if that integration is me remembering. "All right, this is, and this section in Teams, and this is over on my to-do list over here,Ó and whatever it might be, and how we keep all those things organized and together. This is in Notability. Well, I'd love for Notability to be all, end all. Well, it's a whole lot of the thing I need for that, but it's not everything I need for something else. So, I think it's an interesting way that we can think about AAC too. This idea of Ð I walk into Starbucks, and I have the Starbucks app. My phone knows I'm there, it's pulling up on my phone. "Hey, wanna open me? Wanna get a coffee?Ó Why can't an AAC device go in and have the Starbucks menu pre-populated for someone in there to order? [0:42:05] MD: Universal access. [0:42:07] AMS: Yes. Are they using core to say, "I want a caramel macchiato, please?" Maybe not. Do we want to teach them, "I want a"? Absolutely. [0:42:16] MD: Have I literally programmed that into a kid's device to have their preferred non-caffeinated drink ordered at Starbucks? You better believe it. [0:42:26] AMS: Yep, definitely. We tell stories. As kids move beyond just learning language, even young kids, they tell stories. We shouldn't have to create every word of every sentence for a story that we're going to tell all the time. People are going to respond differently to your story, and what you're telling, and you want to be able to then expand on that. But you shouldn't have to do it every single time. The more we can help AAC users be more efficient in that communication and how they connect is so, so important. Then, we get more buy-in. I just have this idea, I love how you're Ð you're like, we're just going to keep putting things out in the universe, that we can get more people at Starbucks, at Target, at Meijer, in library book clubs, wherever people are that they learn more about what AAC can do and give people the space and the patience to really be able to communicate. [0:43:17] MD: Yes. [0:43:18] AMS: Whoa, it's a lot. [0:43:19] MD: I'm just thinking there's a coffee shop here in town, where they hire a lot of disabled teens and young adults to work. I haven't seen an AAC user in there, but like, how cool would that be to Ð I don't know. To start the conversation, but also maybe do a group outing. I don't know. Instead of doing therapy in a quiet private practice, but actually doing it in the community such that users see it in a place where one could gain future employment. [0:43:53] AMS: Definitely. I think then people see you there. This has me thinking of a couple of things. First, Caroline Musselwhite and Deanna Wagner, and dear friend, and colleague, Jane Odom who passed away over the summer. The AAC world lost an amazing ally way too soon. But they did a lot in Arizona with out and about groups like that to get people out in communicating in their environment. But thinking about this, too. If you go to Ð who hasn't been to the CDC website since March of 2020? But if you go to the CDC website, and look at categories of disability, there's a category for hearing impairment, a category for cognitive impairment. They don't have a category for communication impairments. [0:44:34] MD: No, but you know what they do have? Some very poorly worded CDC norms on when language acquisition should happen. Because folks, the CDC did not consult a speech-language pathologist when they were developing their developmental norms for spoken language. Now, you only need 50 words by two. Who knew with this not current evidence-based practice? [0:44:58] AMS: Yes. That should be the minimum, minimum, minimum, minimum. Oh my gosh. That is a whole other conversation, we could have too, is the number of clients I've worked with who could benefit from AAC at this young age who doctors tell them, "Well, they're not three yet, if they're not talking. Just wait till they're three." The longer we wait, the harder it becomes later on. We set someone behind in the long term. Then the curriculum moves so much faster as we try to include kids in the appropriate educational environments and then put them in the transition aspects of their IEP, helping them have realistic goals about what they want to do, and how they learn how to do all of this through, hopefully, this transition period in their IEP or good follow-up programs afterward. I know in Ohio, they serve where I am, the services for adults with developmental disabilities have just dwindled exponentially in terms of speech, OT, and PT. [0:45:58] MD: But the need is actually growing, and that part scares me. Is that our need is growing, and we don't have Ð I am in hopes, I turned 40 this year, which is monumental, and I'm loving Botox. The greatest gift to myself. Aside from that, we have this generation that's coming up that has seen children with disabilities in their classrooms and a part of their life for the first time, truly for the first time. I am in hopes that by having that actual disability Ð because I mean, you and I did not grow up for the most part. I mean, you had your one friend, but in the grander scheme, most of our generations did not actually see children with disabilities, because they were kept in a separate school. Or in my parent's generation, they were told to give them up for adoption, right? That's how close we are to this tidal wave of a shift, but I am in hopes that Ð you're right, our future is bright, that this younger generation of clinicians are going to feel empowered to advocate their siblings, their friends, because they know them. [0:47:15] AMS: I do a paper at the beginning of my AAC course for the multidisciplinary professionals. I have videos they can watch about different AAC users or AAC concepts. But one of the questions in it is, what have you seen of using AAC? What do you know? Then, if they haven't had anything, they can watch some videos, and then they can reflect on what they've seen, and kind of pull that together to begin the class, to kind of get them thinking. The shift, and now, I mean, these are 22 to 25-year-old people, and sometimes older. But the number of them are like, "Well, I knew this kid in my school and they used a thing" or "Oh, I worked as an aide for this person through an organization as a weekend caregiver, and they use this device. They were able to say this or do that.Ó Some of the things that they write about, they describe the person they were with. Then they describe the simplicity of the type of technology they're using. There's part of me that goes, you've got to be kidding me. They could have done so much more, I think, just based on this description. But then, I keep reading, and the takeaway for that person is huge. I realized that they could pick what they wanted, that they could tell me how they feel, that they could order a hamburger. I think, yes, they might have been able to do more. What do I really know because I never laid eyes on them? But what we are Ð we're starting to see that shift, and I can only hope that it moves forward with employment and meaningful volunteer experiences. [0:48:55] MD: Yes. Okay. So then, flip, take this one step further. We have gone so far away from their predetermined questions. We will get back there, I promise. But take this one step further. ASHA just created a caucus. They have a caucus for disability, which is new. One of my very dear friends, Bran Dalton, she's been on the podcast. She has gastroparesis. She is a J-tube user. She was like, "I feel seen, I feel validated." But one of my other friends, Renee, and I were having a conversation. You would love Renee. She works with adults, but she's a certified brain injury specialist, Renee Garrett. But like, we were talking about, why are we not seeing more speech-language pathologists that have disabilities? How amazing would it be to have an SLP who was an AAC user? Right? [0:49:49] AMS: Definitely. They're emerging in these other fields, and it's fantastic. There are Ð I think there are some who are SLPs, but not enough. I recently just had a potential student email me and say, she was not able to do nursing school, she's in a wheelchair, she doesn't have her thumbs. Because they couldn't find gloves that would work for her, and she would have trouble holding the instruments, they said nursing school wasn't an option. So she reached Ð she can speak, but she's like, "Is there any possibility that I could do speech-language pathology at OSU?" I'm like, ÒOkay, one. Wow, I wanted to say I can't believe you were told that." But that'll be her battle to determine what to do. But I'm like, "Here's what we can do, we can work with our ADA specialist at our university to find appropriate medical gloves for you. If you decide you really like the adult medical end of speech-language pathology, where you have to feed a scope for a FEES, or other tests, we can work to see how we can find accommodations in that way. We can look at how you can maneuver in our environment and figure this out." I think disability is a huge part of our new DEI initiatives in the field. Diversity, equity, and inclusion. Disability is a very big part of that. I don't think people with disabilities are going to be quiet much longer, and they shouldnÕt be. I think I'm learning a lot as I listen to myself say people with disabilities. I'm learning a lot with some people I know, students I know at OSU, who were part of this group they formed, called Buckeyes for Accessibility. That some really want to be disabled first, like it's their culture, they're a disabled person, instead of a person with a disability. So figuring out what that particular person prefers to be Ð how to be referenced is really important. I usually tell my class, you're going to see, I tend to default to person-first language right now but I'm learning, and shifting, and changing, and figuring out what is the best, best way that we meet people where they are and where they want to be now, so they can meet their dreams and larger goals. [0:52:09] MD: So then, when do we change from being speech-language pathologists? Because that's Ð what are we pathologizing, right? That's a conversation that we're going to have as a field in moving forward in the next couple years, because that immediately implies that individuals are less or in need. Now, there are individuals that we're treating that have had neck cancers, or have had strokes. Yes, that is Ð I understand our role there. But at the same time, when we listen to disabled individuals, when we listen to autistic voices and neurodivergent voices, it's a difference, not a disorder. But that ties back into the grander conversation today, a vocab selection, and us not projecting what we want on these individuals and their choices. Those individuals having the choice, especially as teenagers. I mean, I say this as a boy mom, and I am gravely concerned about the choices they will make as a teenager. But like, I mean, also we're still at the, "Did you brush your teeth today? For the love of all, [inaudible 0:53:21], you must wear deodorant." But that's where we are. [0:53:26] AMS: Yes. Hali Strickler, I did a presentation. If you're a member of USSAAC, if you choose to join USSAACC, we would love to have you. You don't have to be an SLP. Actually, even if you're not a member, you have free access to the USSAAC webinars that happen throughout the year. But if you are a USSAAC member and a speech-language pathologist, you get access to free ASHA CEUs to take those webinars. Then, you also have access to a recorded library of webinars that have already happened. You won't get the CEUs, but you have a great webinar resource. Hali Strickler, I did in April of last year, one of the best webinars I've ever taken, called Exploring AAC Access to Profanity and Slang. She goes through the research on when kids develop explicit language, and when they start using these. The age, I mean, I'm pretty Ð I thought I was pretty hip and cool and knowing that younger kids use this. But some of the ages that she threw out, I was like, "Holy moly, who knew?" The importance of us to allow this in on the devices, and learning when to use it and when not to use it. I mean, we all have to do that. [0:54:50] MD: Code switch. [0:54:51] AMS: Yes. When we can drop the salty language, which Ð that's probably not what my nephew would call it. He's cooler than I am. But when we drop that, and when we don't, which of our work colleagues is it okay to kind of say, "This is, mm-hmm ridiculous,Ó as opposed to, "This is ridiculous?Ó I think we've got to give them access and give them access at the appropriate time. [0:55:17] MD: So we have a PACT Austin rule that children are not allowed to cuss until they can vote. Okay. We've been saying this Ð my youngest couldn't hear for the first couple of years, and he was always confused forever and from ever. So, we've been saying this rule from ever, okay, and to quote the Bear. My husband was a West Pointer, his daddy was a West Pointer, my family was Navy Intelligence. Four-letter words are as fluent as articles of speech in our home, okay. Not at each other, just like, oh, it's just Ð they just fall gracefully. However, the boys know that they can't say these things until they can vote. A couple of years ago, Bear had strep throat, and so he was home. And of course, it was Election Day. My husband did his civic duty, he took Bear to vote with his strep throat, and Bear turns around, he goes, "Daddy, I can say S-H-I-T now." And he put it just like that, and Christian was like, "No." So he was like, "Yes, but only for today." I think Bear was like three, or four years old. But like, oh my gosh, he knew the rule, right? Like youngest child, he knew the rule. Folks, that happens way earlier than what we ever think, but that's right. Like Bear saying suss, or the Bear is me. My oldest is my husband all over, but the bear has my personality. Like, God help us all. But you're right, we have to give them that choice. Also, let's go here for a second, the ability to talk about sex. That makes people uncomfortable. I mean, it makes individuals that are typically developing uncomfortable, but we have to give our children Ð not children, tiny humans. But like our teenagers, they're having those questions and explorations, they need access. How many 16-year-olds made mischievous choices under bleachers or at make-out point? [0:57:13] AMS: Or are at risk. And that when you have a disability, and in a wheelchair, and unable to speak, you can potentially have an easy target on your back. To be able to talk about those things Ð I was talking to another student. I love that I get to talk to students about all this stuff, so it's so much fun. But we were talking about this, and she pulled up an article by Diane Bryan, which I think was published maybe 10 or 15 years ago, talking about the need to have the proper vocabulary for body parts on the device. I remember this big debate when the article came out about core vocabulary. You don't need to have the words penis, vagina, and breast on there, because you could say, "He touched me bad place." True. That's a really important thing to be able to talk about but then the other argument is, is that going to hold up in court? [0:58:08] MD: Yes. That's where my head went. [0:58:10] AMS: Yes. I think we need to really work with both. I mean, yes, "He touched me bad place." Yes. Perfect. That's a great thing to be able to say. But what bad place? Being able to do that, and continue to build that advocacy. I never expected when I started this podcast today with you, Michelle, that I would say this, penis, vagina, and breasts on your podcast. So here it is. [0:58:38] MD: Oh my God. [0:58:40] AMS: But they're important words. They are. They're important vocabulary. I'm really Ð I advocate for one of my clients who I just Ð you're not supposed to have favorites, but he's kind of a favorite. Really, he has the word pissed on his device. Right now, that's what his family is comfortable with. He's ready to have more. Mom is slowly coming around to it. This is a place where I talked to him about what I think he should be able to do. But it's like, you need to figure out how you want to talk to your family about this. I'll be part of that conversation if you want, but Ð and he respects his mother so much. He loves her. He knows how much she has helped him, and taking care of him, and advocated for him. There's also I think this back and forth of, he wants all those words, but he wants to respect his mom. I just think it's a beautiful, beautiful story. But he just recently got a tattoo. He was coming in with fake tattoos, and he gets so excited, and he wasn't allowed to have a real one, and he finally was allowed. And he came in this week and he said, I got my first tattoo. [0:59:46] MD: He said Òfirst tattoo.Ó [0:59:48] AMS: I know. It's my best thing. But the way he told us that, is he used this feature in his device, where he built that sentence ahead of time. Because he's an EyeGaze user, and he's kind of slow, and has quiet If you mis-activations depending on how his body is cooperating, and he's 25, 26, and his body's changing because of his disability in ways that are making it Ð ugh, breaks my heart, even more challenging for him. So, he uses this feature of a notebook in his device, and he built the sentence. "I got my first tattoo. What do you think?" And then went on with some other things. But he gets in the session, and it would have probably taken him 10 minutes to build that sentence. But we can jump right in and he can connect with his student clinicians and tell me about his tattoo. They can have some back-and-forth conversation right away, because he took the time ahead of time to build that in, and the device had a feature that would allow him to do that. Then we got to all talk about whether he should get it shaded, or colored, and all the things, but it is his first tattoo. [1:00:52] MD: Also, when he's going back for his second. [1:00:56] AMS: Exactly. Oh, and I think this is his concession. He told us his second is going to be up on his shoulder. This one's on his forearm. It's going to say, "I love mom," and then a big eagle on his back. Dude has some plans, and I love it. ItÕs just been a great AAC week. [1:01:16] MD: Yes. We need those wins. Okay. [1:01:20] AMS: So many things. [1:01:22] MD: I'm just like, this is great. Oh my God, I love you. Folks, this is why you go to ASHA, man, because you meet beautiful souls. [1:01:30] AMS: That was my first ASHA since COVID, my first big conference since COVID. I've done a smaller one, and that just made me so happy. Then, ASHA. I was a little Ð my husband is immunocompromised, so it was a little hard for me to be out, and I showed up that night. This past November, Michelle, and I was just like, "Okay, should I be in this restaurant? Should I be meeting all these people? I've already done all these things." And then I met you, and some of your colleagues, and I was just like, "I needed that so much." It has literally warmed my heart to this day even before the podcast. It's been amazing. [1:02:04] MD: Yes. Folks, I'm going to let the cat out of the bag. We have literally been planning since late last fall to do an AAC day already, like in September. Stay tuned. I'm not sure if the date has been published yet, but like moving pieces, also moving Michelle. We're going to do this in September. But oh my gosh, Amy. Okay, when folks have questions, because I guarantee you they will. Also, they're probably going to want to know how do we navigate the conversation with the caregivers and how to put Ð my family calls it a tooty-ta and the tallywacker. That would be the choices that we put on there. But like penis, vagina, and all the things. See, I can't even say it, but I grew up like that's how I was raised. You call it a tooty-ta and tallywacker. [1:02:45] AMS: Yes. We didn't use the real words growing up. They were kind of bad words. Like for me, like literally, to have just said that on the podcast, it was like, "Wow, I just did." I hope my mom doesn't listen. [1:03:01] MD: If my dad were listening, he'll be like, "Yep, that's what we call them." But if an SLP listening has questions about how do they navigate those conversations with caregivers to empower AAC users, how can they reach you? [1:03:16] AMS: They can reach out to me via my email, which is my last name, sonntag.12@osu.edu. [1:03:29] MD: Beautiful. All right. Folks, if you're so inspired, please check out USSAAC, and they do have an Instagram account, as well as a website. It's USSAAC. [1:03:43] AMS: And .org is their website. And that we are Ð we, being another person on the USSAAC board, I'll put we in there. Just because I'm going to share about it. But she created Ð did a lot of work to create a member finder on USSAAC, that people are starting to put their profiles in and populate. So, if you're someone who needs to find someone who knows about AAC in your area, that will be something that's growing on our site, so you can find people. If you're listening to this, and you are a USSAAC member, and you haven't created your profile, definitely, definitely do that. Amazing. No, I think there are so many things that this has spurred me to think about and talk about maybe in the future with you, Michelle, or however else in other ways. [1:04:27] MD: Oh my God, the mic is yours, and come back. Yes. [1:04:30] AMS: We'll have a good time. [1:04:27] MD: Yes. Yes, yes, yes. Folks, hit us up on First Bite Podcast on Instagram, find us there. You know we love it when you follow us on the First Bite Facebook page. We talk about upcoming courses, as well as share the information that our guests have shared with us. Sometimes we'll populate it over on the Facebook page. We love it when you give us five stars and the kind review on Apple podcasts. Those are all of the plugs because I don't like doing that part. Erin is so much better at that than me. Amy, thank you, thank you with my whole heart for coming on. [1:05:08] AMS: Thank you for the opportunity to just talk about something that I just love so much and care about so much. I truly appreciate your willingness. Thank you. [1:05:17] MD: Oh, I forgot my favorite part, Mad Money. At the end of every episode, we always talk about Mad Money. That's what my grandma called it, when you had a little money leftover at the end of the month. Is there a nonprofit that you would like folks to donate or tithe to? [1:05:31] AMS: Yes, I would love that to go to USSAAC. It could go to our general fund to support any of the things that we do if you're really interested in helping people who use AAC in the event of a disaster, or an emergency. There is a disaster relief line of that. But yes, we use that to continue to raise awareness of AAC and support good initiatives. That would be lovely. Thank you. [1:05:59] MD: Yes, always. This is this is grandma. It's all for grandma. Okay, I'm going to switch this over. But Amy, thank you. [1:06:06] AMS: Thank you. [OUTRO] [1:06:09] MD: Feeding Matters guides system-wide changes by uniting caregivers, professionals, and community partners under the Pediatric Feeding Disorder Alliance. What is this alliance? The alliance is an open-access collaborative community focused on achieving strategic goals within three focus areas; education, advocacy, and research. Who is the alliance? It's you. The alliance is open to any person passionate about improving care for children with a pediatric feeding disorder. Today, 187 professionals, caregivers and partners have joined the alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on PFD Alliance tab and sign up today. Change is possible when we work together. That's a wrap, folks. Once again, thank you for listening to First Bite: Fed, Fun, and Functional. I'm your humble but yet sassy host, Michelle Dawson, the All-Things PEDs SLP. This podcast is part of a course offered for continuing education through SpeechTherapyPD.com. Please, check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. As always, remember, feed your mind, feed your soul, be kind, and feed those babies. [END] FBP 247 Transcript ©Ê2023 First Bite Podcast 1