EPISODE 77 [INTRODUCTION] [0:00:05] MBH: Thanks for joining us at Keys for SLPs, opening new doors for speech-language pathologists to better serve clients throughout the life span; a weekly audio course and podcast from SpeechTherapyPD.com. I'm your host, Mary Beth Hines, a curious SLP who embraces lifelong learning. Keys for SLPs brings you experts in the field of speech-language pathology, as well as collaborative professionals, patients, and caregivers to discuss therapy strategies, research, challenges, triumphs, and career opportunities. Engage with a range of practitioners, from young innovators to pioneers in the field as we discuss a variety of topics to help the inspired clinician thrive. Each episode of Keys for SLPs has an accompanying audio course on SpeechTherapyPD.com, available for 0.1 ASHA CEUs. We are offering an audio course subscription special coupon code to listeners of this podcast. Type the word KEYS for $20 off, with hundreds of audio courses on demand and new courses released weekly, it's only $59 per year with the code word KEYS. Visit SpeechTherapyPD.com and start earning ASHA CEUs today. [OVERVIEW] [0:01:24] MBH: Welcome to this episode of Keys for SLPs, Keys to Aphasia-Inclusive Holiday Celebrations. I'm host Mary Beth Hines. Before we get started, we have a few items to mention. [DISCLOSURES] [0:01:35] MBH: Here are the financial and non-financial disclosures. I am the host of Keys for SLPs and receive compensation from SpeechTherapyPD.com. I work at Life Speech Pathology and Voices for ParkinsonÕs. Genevieve Richardson is the owner of Life Speech Pathology and LIFE Aphasia Academy. She also receives compensation for this presentation from SpeechTherapyPD.com. Genevieve is an ASHA member and participant in special interest group to neurogenic communication disorders. [INTERVIEW] [0:02:07] MBH: Now, we welcome our guest today. Genevieve Richardson, MS, CCC-SLP. Genevieve is the driving force behind Life Speech Pathology, a private practice located in Austin, Texas, with telepractice in 12 states. She has developed LIFE Aphasia Academy, an educational and support hub for individuals and families living with aphasia. With nearly three decades of experience in adult rehabilitation, Genevieve is dedicated to improving the lives of individuals with aphasia and their families. She specializes in chronic aphasia, apraxia, dysarthria, and cognitive communication deficits. Her patients range from those just starting outpatient treatments to those who have had a long journey with aphasia and are months or years after onset. Genevieve is also the host of Listen for LIFE Aphasia, a podcast that inspires, supports, and provides resources for people with aphasia and their families. Recently, she developed a five-part video training series called welcoming the unwelcome guest called aphasia during the holidays. Genevieve also offers a free masterclass titled, From Challenges to Cheer: Crafting Aphasia-Inclusive and Supportive Holiday Gatherings. Her goal is to equip patients and their families with valuable strategies and action plans to decrease stress and enhance communication during the holiday season, despite the challenges of aphasia. Genevieve, you are busy. [0:03:45] GR: I'm listening to you talk and I think no wonder I'm tired. [0:03:52] MBH: Well, we are so happy to have you hear on Keys for SLPs to talk about aphasia-inclusive holiday celebrations. [0:03:59] GR: Thank you. I'm tickled to be here, and this is just such a great time of year to tackle this big topic. [0:04:09] MBH: Absolutely. Well, let's start by telling us about your journey as an SLP, and how you decided to specialize in aphasia through teletherapy, and eventually recognize the need for specific family training on aphasia inclusion during the holidays. [0:04:25] GR: You got it. So, the long and the short was, I grew up kind of in the hospital system. My mom is an RN and case manager. She's retired recently, and I was trying to figure out what on earth am I going to do with my life? I actually thought I was going to be an accountant. By the time Ð it was the summer between my sophomore and junior year of college. My mom introduced me to a speech pathologist at her hospital, and his specialty was helping people talk again after a laryngectomy. What I learned that summer is that every story matter. These folks that had gone through laryngectomies had turned over a new leaf, and they were all about getting out there, sharing their story. It didn't matter so much to them that they now had a stoma in their neck, and they had all the complications that went along with that. But they were happy to talk about their story, and inspire others to keep moving forward. So, I basically went back to my university. I was at Cal State Fullerton at the time, and found out they had communication disorders program. I'm like, ÒMust be meant to be.Ó I literally changed my major. I went home and told my parents, ÒOh, by the way, I'm going to be a speech pathologist, and I need to get a Master's.Ó That was the beginning of my journey. I knew from that time working with those folks who had gone through the laryngectomies that I didn't necessarily think I'd work directly with that population, but I wanted to work with adults. I loved the story aspect. I loved being able to work with people and help them in whatever way to get their story heard by others. So, that's how I got into speech pathology. [0:06:25] MBH: Well, we are so happy that they inspired you, because you in turn, have inspired so many others. So, glad you joined this field. How did you come to specialize in telepractice and eventually specialize in aphasia? [0:06:40] GR: Terrific. So, just in general, my journey was through acute rehab. I did that my first four years. Then I did acute medical, then I did home health. And it was during my years of doing home health that I was looking for another angle, another method for treating aphasia. I felt like the tools that I had were not enough. So, I loved home health for the fact that I could go into somebody's home, and pretty quickly, determine what are the top two things we can work on because we only get so many visits in home care, and it all had to be functionally based. And we didn't have time to do a protocol. I couldn't do a lot of the things we are trained to do in our field, not in that setting any way. So, I attended a conference in San Diego, by Bill Connors, and he talked so much about neuroplasticity, and the population he served was chronic aphasia, and he just had such a different angle and perspective that I had never heard before. Bill was just such a generous guy and that he was already in telepractice. He said, ÒYes, if any of you have questions, we can always just jump on the computer and talk about it, because he was all about inspiring speech pathologists to try telepractice, because he himself had built a very successful business. And he saw people across the US and internationally. Anyway, I worked with Bill. He was just so generous with his time. Well, it ended up my family and I, we moved from California to Boston, and it was during this transition that Bill brought me on board with his business aphasia toolbox. That's when I got into telepractice in 2014, and that's when Ð so, for all of you calculating, pandemic was 2020. So, I was in it over six years before the pandemic hit, and everybody had to go to telepractice. We started out on Webex, that was a very corporate system, and I loved it because we had a whiteboard. So, I know I'm going on a little tangent about telepractice here, but it was so awesome in that whatever I typed on the whiteboard, we could then share with the client after the session, and that served as a jumping-off point for them to do their own home program. So, I love that. I didn't have that doing in-person work and I thought that was just so amazing. And then as Webex turned into Ð not turned into, but then we had Zoom and there were other platforms. I've been using Zoom for the last, I don't know, three-ish years, three, four years. Anyway, I just came to love telepractice for the right person, and you and I we've talked a lot about telepractice before, and telepractice is not for every person, but for the person that it is for, it is a super powerful tool. And for the chronic aphasia population, for the adult population, I think it's wonderful. Because we have Google at our fingertips. It's right there. We can do person-centered care, life participation care. They want to know about reef corals, and we need reading material about coral and splicing coral, whatever, I can pull it up nearly instantly and we can jump right into that for treatment. So, that's my little soapbox about telepractice. I wouldn't be here today, if it weren't for the years I spent with Bill, and really learning from him. He was, I thought revolutionary in his approach to working with chronic aphasia. Not only aphasia, but apraxia, dysarthria, cognition, and I was able to blend everything I learned from him plus all of the years of functional treatment I'd done from home care and acute rehab. When Bill passed away suddenly, in 2020, that's when everything really changed for me, and there was really not a place for our clients to go. There wasn't anybody else, serving them kind of the way we were, and talking about it with my husband and my family. I just knew I needed to pick up the baton and run with it, and that's how Life Speech Pathology and LIFE Aphasia Academy came to be. [0:11:34] MBH: Well, I am sorry about Bill's passing. I know he was a good friend of yours, and such an inspiration for us all. Do you know when like the first year he did telepractice was? [0:11:44] GR: He started in 2005. [0:11:49] MBH: Wow. [0:11:49] GR: He was on a platform called ooVoo. So, when I was in that course with him, that neuroplasticity course about aphasia, he literally had two of his clients come on, on ooVoo and showed us. He was able to demonstrate in that conference how it worked. But really, it was two talking heads, much like we are right now. You can't see us. You can hear us. But it's Zoom. Think of it just like Zoom. Two talking heads and a chat box. That's all he had. But that's what he started in 2005. So, he was definitely a pioneer in the field and he trained hundreds, if not thousands of speech pathologists over his career to do telepractice. [0:12:37] MBH: He was. He was certainly a pioneer. I want to dive into aphasia inclusion. But it dawned on me while we were talking that some people including SLPs, are not always familiar with the term chronic aphasia. Can you define that first? [0:12:52] GR: Sure. I think it depends on the literature that you look at. Some literature would say chronic aphasia starts after that kind of nebulous three-month period of time of spontaneous recovery. I tend to think of it as like a six-month period. Again, it's arbitrary. But the person, the family has usually gone through the rehab process. They've been discharged, and they are living their life, they're at home and trying to figure it out. So, any time, probably after discharge from outpatient, sometimes three months, sometimes six months. That's kind of where I think that chronic aphasia, kind of borderline is. So, I love that area, because this is when families, they've settled in. Some of the chronic stress. Some of the shock of everything related. If it's a stroke situation has kind of worn off, and they've had some time to try and figure out how to get their feet back under them, and start new routines, and figure out where do they go from here? What does life now look like? Let's look at identity and responsibilities. That is when the families really can start hearing what us professionals have to contribute to help them move forward. When you're in the hospital, the families and the person with aphasia, they are just surviving. They're just trying to get through. They haven't had time to cope and process. So, six months and after, that's really when the training, I believe, is most effective and most powerful. That's part of why I started LIFE Aphasia Academy because I wanted that to be separate from the private practice, traditional medical therapy. I wanted LIFE Aphasia Academy to approach families in a different way, to give them support, education, training that they might not otherwise receive. [0:15:09] MBH: Well, and that is really what your whole holiday-focused aphasia inclusion during the holidays is all about. It's really training the families to work through the holidays and enjoy the holidays with their loved one with aphasia, and also helping the person with aphasia advocate for themselves. [0:15:27] GR: Absolutely. So, last year, I tend to make lots of these eBooks. I get this inspiration, usually in the middle of the night, and then I get busy and create it. So last year, I had made an eBook called Talking Turkey, about aphasia inclusion at the holiday. [0:15:44] MBH: Very clever, very clever. [0:15:46] GR: it just resonates with me, because we don't have conversations about aphasia. We don't have conversations to inform others as to what it is and how it presents, and then what can others, how could they still form connections with a person who has aphasia? Because what happens when you don't understand a disease or a condition, people avoid it. They stay away. They're embarrassed. They don't want to show pity. They don't want to make the other person who has aphasia feel bad, so they avoid. Then, that leads to isolation. So, I started this thing about aphasia inclusion. I don't know if I'm the first one, it doesn't matter. But that's what I called it, last year at this time. So, this year, I've taken it a step further, and I know we're going to get into all of that. But in general, aphasia inclusion, just like we include other people that have other things going on, or their preferences, whatever the case may be, why can't we do it for aphasia too? [0:16:55] MBH: Absolutely. The other thing about aphasia inclusion, you talked about people not knowing how to interact with the person with aphasia, but also the person with Aphasia sometimes isolates themselves, because they don't know how to interact with others, with limited communication. All right, so aphasia inclusion, let's define just what inclusion means in today's society? Well, in general inclusion, we talk about diversity and representing everyone for whatever their preferences are, or wherever their history and background is. We also talk about inclusion from the aspect of accessibility and accommodation. How do we as a society, provide accessibility and accommodation? Education and awareness, equity and fair treatment, these are all prime words and phrases that we've all become very familiar with over the last many years. Inclusive policies, practices, community engagement, dialogue. That's a big, like, for me, that's the big star next to that one when I think about aphasia, inclusion. Support systems and networks, that's another star for me. Respect for individual identity. It's so important as a society to understand where a person's coming from and how we can interact with them. Why can't we apply that to a person with aphasia? It's a little more complex for the person with aphasia, because every aphasia is different, right? Every person starts from a different place with their own memories, and skills, and education, and family environment. And then you throw an aphasia on top of that, and as we, in the field that work with folks with aphasia, there's no two people alike. Yes, we can sometimes categorize somewhat, but it's very different. So, empowering and advocacy is probably my third star, as far as aphasia inclusion goes, and that's what I focus on. So, in general, that's inclusion from a society, as I see it, from a societal perspective, with some caveats to aphasia, and what I perceive is important, and it's not just what I perceive. It's the conversations I have with my clients, and also with their families. [0:19:35] MBH: Absolutely. Okay. Well, let's talk about teaching as far as aphasia inclusion goes, teaching self-advocacy, and teaching the family to advocate. [0:19:46] GR: Oh, it's so important. So, if we can just talk about, by the time I meet somebody, let's say someone is six months to a year after a stroke, and I do my consultation with them, and we get through the evaluation. Then, I really start hearing the stories because families are not ones to complain. They're grateful for the time, and the energy, and the investment of someone that understands where they are. So, sometimes it takes a while to hear the stories and their experiences. Number one, I feel like I have to start at the beginning about aphasia education. What is it? What is the brain? I mean, as far back as left hemisphere, right hemisphere. Left hemisphere controls the right side of the body, blah, blah, blah. It's not like I'm giving a neuroanatomy lesson by any means. But I do this thing and I learned it from Bill. He called it the visual definition of aphasia. And it's as if you are holding up a pen. You're the speech pathologist, you're holding up a pen and you ask the person to name it. Well, what is the pathway in general, through the brain and what has to happen? All of the processes that need to occur for that person to come up with and then say the word pen. So, I love to start there with new families because they start to understand how the brain processes information, how complex it is, that you can't just say he has word-finding problems, because that's a blanket term, as far as I'm concerned. Well, why does he have word-finding problems? And that's part of my job, and why I really try to dig into it. But I find that in general, with families, we have to start with education, we have to start with awareness. Sometimes there's misconceptions by families that he's acting up, or he's acting this way on purpose, or they project, I don't know, if it's project. That psychological term. But they have these ideas in their head about, well, he does it because he wants to be difficult, or he wants to be challenging or mean, or he's just trying to make me do more work. Well, these are a lot of misconceptions. Additionally, when I meet someone who has chronic aphasia, say, a year or two after their stroke, they've often developed some really bad communication habits. One example of that, I started with a gentleman, he's in his early eighties and he has significant aphasia and apraxia. His greatest strength is his listening. He can understand basic conversation, he can understand the basic news, those kinds of things. But you have to talk just a bit slower, and you need to give him a couple extra seconds of processing time. Well, he had no self-esteem. When his wife would sit in on the visit, I would ask him a question, and heÕd automatically turned to her, for her to answer. He would never even try. He acknowledged, like question came in, and then he turns to her for her to answer. Well, I tell you, that was the first thing that we addressed. We had to do tasks to build his self-confidence, so that he could start the process of processing, so that he was willing to try. We also had to get him to realize that even if it didn't come out right, or he didn't understand it, or he needed a repetition, completely okay. We had to teach him to advocate for himself to ask for what he needed. More pausing, more time, say it again. So, we have to start from the very basics when you're working with someone with chronic aphasia. Empowerment is built in. It's hard to parse all these things out because they have to happen almost simultaneously. We have to build confidence. We have to teach them that when they ask for something, number one, it's necessary and it's okay, and we're going to accommodate them. But so many people with chronic aphasia feel like I had one person say one time feels like they're constantly beat down. And what happens when you kick a dog too many times, right? They don't try. They don't try, they cower. And if you push them too hard, they bite. Right? I won't say that any of my chronic aphasia folks bite. but the point is, it's important We have to look at all of the situation. I don't just go in and go, ÒOh, you need semantic feature analysis or we're going to do VNeST, or we're going to do NARNIA. I don't go in with the thought of the treatment I'm going to do with them. I look at who is this individual? What do they need? Can we get past some of these habits that the person has come up with, as well as their families? So, we can get past that and get the person with aphasia thinking and processing. Because we know that imitation is them using our frontal lobe, right? If we give them something, and they say it right back to us, they're just being the parrot. They're using our brain. They're not thinking it on their own, and that's an important aspect of working with someone with chronic aphasia. So, I feel like I got on my soapbox again, Mary Beth. Reel me back in. [0:25:52] MBH: Well, when you think of those habits, and then you combine them with the misconception, that is often people, families and people with chronic aphasia, often have the misconception of, if they've passed this window of spontaneous recovery, then they have reached their full potential. Part of that is the insurance programs and there are only a limited number of visits. So, sometimes they feel like, ÒOkay, I've graduated, this is it.Ó So, they developed those habits or continue with those habits. [0:26:25] GR: They do. That's why it's so important. So, if we can go back to my days of working with Bill, telepractice was not a covered service prior to the pandemic. Medicare didn't recognize it. Insurances didn't recognize it, nor did they reimburse for it. So, the folks that Bill worked with, were the ones that weren't willing to settle. They found him word of mouth. He often got his referrals word of mouth because he was a big lecturer, and he interacted with speech pathologists across the country. When one of their patients would say, ÒWell, you're discharging me, but what's next?Ó That's how Bill would get those referrals. So, there's a mindset. I know, I'm preaching to the choir, the speech pathologists out there that might be hearing this. But there's a mindset. Those that are willing to do treatment that's paid for, they may not be happy about it, but they'll stop treatment when Medicare says you're done, or the therapist says, ÒMedicare says you're done.Ó Versus those that are not willing to settle. That are always looking for that next, how do I get past this? And those are the folks that make the progress years later. I don't believe in a plateau. Yes, there is spontaneous recovery, and we hope that the therapists that are interacting with that person during that period of spontaneous recovery are doing everything they can to maximize it. But our system right now is short. If I think back to when I was first in acute rehab, my first job at a master's program, freestanding acute rehab. That was Ô94, I started my CFY. And we had clients staying in this hospital 8 to 12 weeks. I left there four years later, and it was like a three-week stay. That's a huge period of time and recovery that's now getting pushed to outpatient. Because we found that in the acute rehab part, that's when we could comprehensively work really well as a team, and they are getting reinforced all day long. Because that's how our system worked in that hospital at the time. The nurses knew what we were reinforcing in speech pathology, and what PT and OT were doing. So, the they got comprehensive help and ongoing education. You go from an eight-week stay to a three-week stay. That's five weeks of education and training they're not getting now. I know the stays continue to get shorter. [0:29:16] MBH: And with the three-week stay, their medical condition isn't more of an acute state. When you give a full eight weeks of in-patient therapy, well, there are probably five weeks where they're more stabilized and now those five weeks are at home, maybe with outpatient and then a limited number of outpatients and visits. I know we're here to talk about aphasia inclusion, but having the ability to see anyone where they are, and not make the person and their family transport to the outpatient clinic is really an advantage of telepractice. [0:29:48] GR: It is, again, for the right person. [0:29:50] MBH: All right. So, along these lines, sometimes people when they are discharged it's kind of an all-or-nothing approach. Well, if I don't have therapy anymore, I have nothing. Let's talk about group therapy and how that contributes to acceptance and inclusion. [0:30:06] GR: It's so important for individuals with aphasia to realize they are not alone. One of my favorite things in my practice is I've developed a couple of different groups, and I'm very conscientious about matching up folks that have kind of similar symptoms, but also that they have somebody else to connect with. So, I have a conversation group, with three gentlemen, and we talk sports, and teach them how to interact with each other. They have conversations without me. Sometimes I don't even need to be there. I mean, we're doing stuff in the group, of course, but they can email each other outside of group, and it gives them that connection. Because when you feel alone, you don't put yourself out there. But when you feel like you are part of something, part of a community, then people will engage more. They'll try more things, or they'll try different language strategies, whatever it is, when they're with people that they feel safe with. So, there is an absolute important part of group therapy in what we do. [0:31:14] MBH: So, empowerment, acceptance, inclusion, and connection, really feeling connected. [0:31:19] GR: So huge. Again, I mean, those are four really big words, but they all work together. [0:31:25] MBH: Before we jump into aphasia inclusion at the holidays, I think we've painted a picture of what aphasia inclusion means. But let's talk about a person with aphasia in their family, or maybe just the person with aphasia, and their friends who are not with them all the time, every day, in the home, that person goes to a restaurant. And let's talk about aphasia inclusion in an everyday situation in a restaurant. [0:31:48] GR: So, great example. There are some restaurants that have these great big, colorful, laminated menus with pictures of just about every dish. The writing is a little bit bigger, and it's having the pictures and the bigger writing, and the bigger format of these menus. That's really aphasia-inclusive, right? It's so much easier. I prefer those menus. I hate, as the older I get, and now I have to wear these dumb reading glasses. If I didn't bring my glasses with me, half the time I can't read a menu and I got to pass it to my kids to read it to me. Well, what if you have aphasia on top of that? You don't have any idea what's on that menu if you don't have beautiful pictures. So, what can we do to make a restaurant experience more inclusive? I mean, I'd love to get to the point where we could influence restaurants and coffee shops to have picture menus with larger print, those kinds of things. But in the meantime, until we can get to that, in therapy, I will often work with my clients to figure out where are their favorite places to go, and I will pull up an online menu. We'll blow it up really big on the screen. We can print it out. We can find pictures to go with their favorite dishes. And I can very easily copy and paste those pictures, put it on the menu, so that the person can plan ahead. They're going to go to a deli, and they've got two or three different things they want to order. So, maybe, before they leave, they look at their menu that they have at home, and they figure out what they're going to order. In therapy we then practice. How do they order it? Do they point to it? Do they say it? What is the case? Do they do their best to order what they want? And if the waitress or the waitstaff is pushing them and rushing. They may have a self-advocacy strategy of give me just a minute or I know what I want to say. [0:34:02] MBH: It's all plan B. They may have it written out. [0:34:06] GR: They may have it written out. They may have our picture. If they carry an iPhone or an Android, they may have a picture of what they want to order on their phone that they can then hold up and show. ThereÕs so many different ways to do it. So, until we can get all restaurants, we're not going to. But we can try, that's a pipe dream. Restaurants to have these great big menus with beautiful pictures of what people are ordering. In therapy. We can work on it. But I want to empower families to break down the task, to plan it, to do just like I would do in therapy, to help the person with aphasia say what they want to order. Because what's a life without choices? That's not much of a life. [0:34:53] MBH: And what's life with someone else speaking for you? [0:34:58] GR: There might be a night that I want salmon and not steak. What if my husband ordered steak from every time we went out? I might not. I might be happy 80%, but not all of it. I wouldn't want an assumption to be made. I want to have a say in what I want and what I want to communicate. So, that's what we want to do for our folks who go to restaurants, or the coffee shop, or they meet their friends for coffee, happy hour every week. They need to know how they can order. So, I'm all about, let's figure it out and empower. You don't have to have their own speech pathologist to do it. I want to empower them to be able to do it on their own. [0:35:45] MBH: All those are just little steps toward independence and connection. As human beings, we all need to feel connected, right? [0:35:52] GR: Absolutely. [0:35:54] MBH: All right. So now, let's jump into the holidays. When we talk about socializing and inclusion, specifically during the holidays, what are some of your suggestions? [0:36:05] MBH: So, I'm going to go at this from the perspective of different people who have aphasia, because I have the conversations. My clients that I see, I know them inside and out. We're not just working on therapy. I understand who they are, what makes them tick, their preferences. I might even know all of their dog's names and the vetÕs name. I mean, that's part of our connection. So, when it comes to the holidays, in general, holidays can be stressful, right? Because new activities on top of everyday activities. Expectations to live up to. Interacting with people that maybe you only see once a year, and maybe in your family, there are some difficult personalities or challenging situations. Or maybe you don't like the holidays at all, for whatever reason, and hearing one more Christmas song, seeing the Salvation Army guy on the corner just aggravates you. We can have Ð again, I know that there's a spectrum. But in general holidays, it just adds more on top of everyday life. So, what does the person with aphasia want? [0:37:24] MBH: Not to interrupt you, but it's also a time to reminisce, and that can be really hard on people with Ð reminisce on what happened, maybe if it's their first year out after their onset. What happened last year? What the holidays were like five years ago? Or what the holiday was like when I was running the kitchen? And now I can't do that. [0:37:48] GR: So, if we take it from the perspective of you, the speech pathologist, what is your holiday like? Are you the cooker. I'm the cooker. That is my love language. It's what's important to me. I love to cook. So, for me, it's always trying to outdo my own self, every year, good or bad. I'm always trying to up it. I'm always trying to do something better. So, think of it just from a human perspective. You, who was listening to this episode, what is your holiday tradition? What is your identity at the holidays? What are the challenges you have in your family? One of my dear clients, he lives in Chicago. It was an anniversary party and it was he and his wife's 50th anniversary, and he was dreading his brother coming to the holiday because of his brother's personality, and the topics that he brings up, and how he's always poking people to get a rise out of them. So, we had to talk about, well, we understand what his brother's spots are, so to speak, right? We know what that animal is. So, let's take it from the perspective of my clientÕs aphasia. What tools can we give him? What perspective can we give him and strategies to help mitigate that specific situation? So, we prepared. We spent weeks working on it, not the whole time. I don't want to say that that's all we worked out. We worked on lots of things. But we always touched on it to help him process and deal with some of that emotional baggage of how he interacts with that particular brother and he was able to execute the strategies. He had a toolbox of strategies, and he was able to execute during that anniversary party, and it went off swimmingly. There were no conflicts, because he had anticipated and prepared, and knew how to manage his energy. What I mean by that is, not only his outlook on the interaction, but also if he knew he had a three-hour period of time until he became really exhausted because of his aphasia, he knew how to manage the situation that he's got a three-hour span of time, and what's he going to do when he starts getting tired? When his speech gets worse, right? When he starts getting frustrated more easily, because his aphasia gas tank is empty. [0:40:32] MBH: And I continue to work on the words in the language to use in Ð [0:40:36] GR: All of it. What he would say, if his brother said this, what he could say back. Because like I said, he knew his brotherÕs spots. He knew what was likely to happen. And he also knew who he could lean on in the family, that would help defuse any situations that came up. So, he literally had conversations with some of these folks before the party, so that they could be on the lookout, so that they also had some tools, so that they kind of got their game plan together. [0:41:13] MBH: I love the term that you've used for that, an aphasia ally. [0:41:17] GR: I think it's so important. Because our folks with aphasia, they may have a significant other, or they have an adult kid that knows them best. That's an awful lot of responsibility on just one person. What if we could share that responsibility and knowledge with one or two other people? Why not go into a holiday situation where you have another ally. Identify who's coming, and then have the conversation beforehand. Again, anticipate, prepare, think through strategies, understand what your communication limitations might be, and/or when your gas tank gets empty. What does that look like? And what can you do about it? So, that's why I think the holidays are a unique situation to kind of drive home to the family, and those that care for someone who has aphasia, to really accelerate the learning, right? Because when you don't have pressure, think about studying for a test in university. I'm a procrastinator at heart. That is me. Two weeks in advance, I know that that test is coming up, but I won't necessarily start studying them. I will put all my effort in a few days leading up to it. So, why can't we use the holidays as that kind of pressure point, to really drive home communication partner training. Looking at the environment, looking at strategies, looking at self-advocacy, for the person themselves to advocate for what they need, as well as that aphasia ally, or the significant other, that can also advocate in a nice, respectful way. You don't have to give a dissertation. You don't have to stand up in front of Ð you sit down for dinner at Thanksgiving. You don't have to give a dissertation about Thanksgiving. That's not what I mean. It's about making some connections with prime people that are going to be at that holiday gathering. [0:43:33] MBH: All of those things contribute to decreasing the level of stress. [0:43:38] GR: It's aphasia inclusion. [0:43:40] MBH: Mm-hmm. And really being able to advocate Ð sometimes that point of advocacy stems from just asking the person well, what are you really worried about? Because they don't have the language to explain it. Sometimes it might take the whole session to get to that point. What are you worried about? Because if they can't express what they're really worried about, you can't think of a strategy, and problem-solve together, and work together if you really don't know what it is. And sometimes it's not that obvious. [0:44:11] GR: It's not. So, that's where some targeted questions can go. My example of my patient going to his anniversary party and anticipating his brother, trying to identify what those pressure points might be. We got his wife involved. It was his homework assignment. She didn't come on the session with us. But he asked her some targeted questions. What is she worried about? How is she worried that her husband is going to be received when his words and thoughts don't come out that way? So, we gathered a lot of information before we jumped right into how are we going to attack this? [0:44:55] MBH: Okay, so for the SLP, who may be working with someone with aphasia, either new onset or chronic, it doesn't really matter and they want to write some goals for aphasia inclusion during the holidays. These would be short-term goals, right? Versus a long-term goal, most likely because the holidays are coming up. I know this could be listened to at any point in time, but let's just talk about some short-term goals. Okay, so can you provide some examples of short-term goals that people could use during the holidays, or leading up to either the holidays, or maybe it's a birthday, anniversary, family event, family vacation, whatever it is? [0:45:29] GR: Absolutely. So, I will tell you, I will give a pitch for life participation approach to aphasia, LPAA. I'm sure many of you have heard of it. You're probably doing it. So, it's all about communication. When I'm talking about goals for holiday inclusion, I'm not necessarily talking about impairment-level goals. The person is going to be able to say a five-word sentence, 90% accuracy. I'm not going that direction. I'm looking at communication in general and there's goals that include the communication partners. So, one example could be, clientÕs family will increase the use of supportive communication strategies in 9 of 10 conversation terms, when provided direct education about aphasia, and client preferred effective communication strategies. Gosh, doesn't that just sound like another speech pathology goal, right? What does that mean? So, for that particular goal, that means I've worked with a client and their significant other to understand and they understand, what do they need to communicate more effectively? Do they need people to slow down? Do they need them to pause? Do they need them to ask clarifying questions? So first, we identify these things. And then we walk through the person advocating for themselves. ÒSally, slow down. Say it again. Give me a minute.Ó That's him advocating. But what about his significant other advocating? She could say, ÒSally, can you say that just a little slower?Ó So, we want to identify what are these communication strategies, make sure the person with aphasia has a way of communicating those strategies. It's written down, it's on their phone, they say it out loud, they have a gesture. And also, the significant other needs to understand those strategies. They got to be crystal clear, then they've got to be in agreement. Then the goal is about, can they apply those in nine of 10 communication opportunities? Well, how do we measure that? It can be from Ð if you see your client on a Monday, and you see him again on a Thursday, and you know that they had a doctor's appointment, they were going to the pharmacy and the grocery store. So, you start having them really think about, are they applying these communication strategies during those opportunities? We will talk about it, what can come up at the pharmacy? How do they then practice? So, some of this is role-playing. It's situation specific. But I work with them and treatment to anticipate and be ready so that when they are faced with it, they're not deer in the headlights. They can pull from their toolbox. [0:48:36] MBH: As far as the holidays, go, you apply those to a holiday party? [0:48:40] GR: Absolutely. [0:48:41] MBH: Maybe the person needs yes/no questions. Maybe they need choices. Maybe they need pictures. Whatever they've decided their strategies are, those are communicated to other people, and they're using them at that party, 9 out of 10 turns. Of course, you're not going to be behind them counting those turns, but you can self-report. [0:49:02] GR: Right. But just self-report is another very important part of like the LPAA approach. We want them to take Ð it's not about us, they're [inaudible 0:49:12] in us, plus and minus on our tally, on our data collection. It's about what are they experiencing, and how did they feel that they did? So, that's one example of a goal. We could write a goal for something super specific, like sitting at the holiday dinner, around a table, and that they utilize their communication strategies, 9 of 10 opportunities, 4 of 5 opportunities. It doesn't matter what our measurement is, as long as we have a measurement and they have a sense of how do they know if they succeeded? And if they didn't, then what do we need to tweak for the next time? So, we can apply it to anything. Asking for dishes to be passed. If you're having Ð if you're sitting at a formal sit-down dinner, you can write these goals, lots of different ways, right? It needs to be meaningful to the client. They need to know what to do. And we need a way of measuring it. [0:50:11] MBH: That's such a good example. Because that's what we do. Usually, the food comes around the table. But then after that, you have to ask for it. Well, the tendency of a lot of care partners and caring family members would be to provide the food for them and to make the plate for them. And then to Ð do you want more versus that person advocating? It's such a little thing, but it all adds up to more independence. [0:50:36] GR: Absolutely. Maybe they have something written down that says, ÒI hate green beans.Ó Maybe they have it on their phone, or they've got it written down, or they've practiced being able to say, ÒIÕll pass. Keep it going. No. No green beans for me.Ó Isn't that important? Again, it's about choice and autonomy and such. So, let's do another goal. Communication partner will verify comprehension by asking questions such as, ÒDoes that make sense?Ó You give a message to a person with aphasia, and you need to check in with them. Did it land? Did they hear it was a question? Do they process the question? Do they know how to answer the question? That's just another small example. [0:51:25] MBH: Well, that's a good example. Because so often, they don't want to help the conversation. They don't want to be problematic. So, I have found that people with aphasia can be excellent actors and pretend that they're understanding when they don't understand. But if you stop and ask, did you understand, then they might be more inclined to say, ÒWell, no, I didn't.Ó [0:51:46] GR: Yes. And I think the people that they're conversing with if they understood a little bit about aphasia, and they understood that they can't just flippantly ask a question and not pay attention to the person they're talking to, right? Because in our society, we are always rushing. We're here, weÕre there. We ask a question as we're walking through a room, and we never may have made eye contact with the person we're talking to. So, what if that communication partner understood just a little bit about aphasia? That if they're going to ask a question of Joe, who has aphasia, that they pause for a second, look him in the eye and ask a question, and then wait. That's part of why this whole holiday of aphasia inclusion thing. It's our opportunity. If I have a family member with aphasia, it's my opportunity to educate the other people. Again, not a thesis, just Joe is still the same person he's always been. He just can't get out everything he wants to say. He still has memories. And that's one of those aphasia myths, right? The whole thing about intelligence, just because somebody can't express themselves or understand, it doesn't mean they're less intelligent. They're just processing in a different way, or they need it to come in, in a different way. The holidays is a prime opportunity of just giving a little bit of education. Most of society had not heard the word aphasia until we had a famous actor come out this year. His family come out for him and say, ÒHe has aphasia.Ó Most people are like, ÒWhat is this work?Ó [0:53:31] MBH: ÒDo you know about this?Ó Like, ÒWell, actually, yes, I do.Ó And we all should. If we think about aphasia inclusion, if that is our goal for society, then we should all know what it means. Right? [0:53:43] GR: We should. So, that's part of why this holiday thing is so important. This is our opportunity. This is where my mission, and again, I guess it's me putting myself on people, but it's about educating and letting people be a part of it. So, if I can help the significant other tell people what aphasia is, and help them with a couple of little strategies they can do to communicate with Joe at Thanksgiving. Win-win. So, let's do one more goal. [0:54:15] MBH: One more goal would be great. [0:54:17] GR: All right. Let's see. I have written down family members and close friends will apply communication training strategies to a conversation with a client, 80% success, following communication partner training. Again, this goal can be tightened up, but in general is just another way of including communication partner training in your treatment, and then measuring it based on how it works outside that therapy session. We've always Ð in school, weÕre taught about generalization and carryover training and all that stuff. Well, I don't know what it is if it's not this, right? Taking a couple communication strategy and applying it at the holiday, whether it's from a care partner, because we can write goals for care partners. It doesn't always have to fall on the person with aphasia. Or maybe it's a team effort and the goal is written for them to work together for successful communication opportunities. [0:55:19] MBH: Absolutely. Okay. So, we talked about establishing those aphasia allies who can model communication techniques, facilitate interactions, provide choices when needed, illustrate gesture, be that person. And as we said, any family member can be that, or maybe it's a friend. Maybe that friend is going to the neighborhood cookie exchange with the person with aphasia. So, maybe that person becomes their ally, and can help other people communicate. Because what all of this helps one do is venture out of their house, venture to these social gatherings. But if that person with aphasia ventures to the neighborhood, cookie exchange, they feel isolated, they can't talk to people, they feel uncomfortable, other people feel uncomfortable talking to them, and they're not going to go again, and that's going to lead to isolation. [0:56:08] GR: Which is anti-isolation. [0:56:11] MBH: Anti-isolation. We had enough isolation in the pandemic. No one needs it Ð [0:56:15] GR: Oh, my gosh. That was so hard, for so many that didn't have aphasia, right? It's part of this whole communication thing. I'll back up a step. We all take communication for granted. Again, we're so busy. I know I'm guilty of it. I'm sitting here in my office, and my kitchen is out there, and I know, one of my kids is out there. Do I get up and go talk to her and make eye contact, and make sure she understands what I'm asking her to do? Usually, it's because I'm asking her to do something. I yell. And that's a bad habit. And that carries over to other situations. I remember growing up in my parentÕs house, and it was just kind of this long, skinny house. And I remember being at one end, and my mom would yell at me from the other end, not yell at me, yell towards me, whatever her message was, and I would stop what I was doing, and I'd walk down there and like, ÒWhat? What did you say?Ó Well, why can't we just clean up, literally? If we could just clean up how we communicate in general, we could be aphasia-inclusive. You and I, we're making eye contact. We're not distracted doing other things at the same time. That's just one simple strategy, right? It's not rocket science. Communication, itÕs really not rocket science. But it's how do we get people to understand that it's important and to change their behavior. So, that's another aspect. [0:57:45] MBH: Right. To understand to be thoughtful, and to plan that change. Because it takes a little work to change. You can't just change without thinking about it. [0:57:53] GR: Oh, my gosh, so hard. I mean, my husband's been in therapy for 31 years because he likes to start a sentence, usually without context, not always. Sometimes without context, and that he turns his back as he's finishing a sentence and is walking away. I just stopped chasing it. Because I would always guess, and I almost always got it wrong. If I guess what he was intending. I never got like the full intention of his message. So, I stopped chasing him. I'm in here, you can come back, and tell me what you need me to do, or I'm not going to do it. So, part of this communication partner training, and that's one of those buzz phrases, is just understanding how do we communicate best. Eye contact. Slowing down. One conversation at a time. But there's challenges with that, because we've all gotten used to this hustle-bustle. [0:58:50] MBH: ItÕs kind of about simplifying. Simplifying the Ð to a degree. Then, as far as the holidays go, you also have made the suggestion to simplify your holiday. [0:59:01] GR: Simplifying your holidays. YouÕre the wife, your husband has aphasia, and youÕve always had your immediate and extended family and friends and neighbors. You have 20 people and you do this formal sit-down dinner. That's a lot in general. Then, you add your husband with aphasia on top of that, and it can be too much because then you're worried. Not only are you doing your holiday things that you do, but then you're worried about how's he going to be received. Well, why not simplify? Why not change from a formal sit-down thing, to why not a buffet? Why not a potluck? For myself, I told the story earlier about how I always tried to outdo myself on the food every year. One year, I did the formal sit down, pass the dishes around. I hated it. I like buffet so much better. Just line it all up, people get what they want, sit where you want. If itÕs a small group, weÕll sit at the table, whatever. But why not think outside the box? Think about where can you simplify. We want to simplify communication, why can't we simplify the holidays by suggesting to our families who has a loved one with aphasia, why not suggest a potluck? Or maybe it's not a full potluck. Maybe it's you know this person's coming and they're great at desserts, let them bring a dessert. People are happy to do it. Of course. Simplify the holidays. Take some of the pressure off. Order some things from the local grocery store, maybe, or the restaurant. Think outside the box, and that's what I would say to families. Because what do people remember from year to year? Connection. Stories. Yes, the turkey might have been exceptional, but when somebody says, ÒWhat do you remember about Thanksgiving last year?Ó They're not going to say the turkey. They're going to say, being with my family, or my friends, or whatever. So, simplify. Think about the environment. Think about, we all put expectations on, ÒOh, it's supposed to be this Martha Stewart Christmas.Ó Well, I don't know about you, but I don't iron my sheets. It's not going to be a Martha Stewart Christmas at my house. It's going to be a nice buffet. [1:01:25] MBH: No. And I have a feeling that Martha had a lot of help with all her look in Christmas, right? [1:01:29] GR: Right. They don't reveal the woman behind the curtain. [1:01:32] MBH: Yes. Whatever holiday you're celebrating, whether it's Hanukkah, Christmas, Kwanzaa. Or maybe you're just celebrating being together, you made a really good suggestion about simplifying and maybe changing your traditions to make it easier on the host, or a hostess, as well as easier on the person with aphasia. Last thing I wanted to touch upon was seating arrangements, and how the person with aphasia interacts in a big, loud conversation with lots of people talking at once, or maybe being close to that group, but kind of not in the middle of the big conversation. [1:02:09] GR: Yes. This is a loaded topic because there's so many different angles you can process it from. So, let's say everybody's sitting at a big table. What about the person with aphasia being more at the end, and not in the middle? Maybe where they can get a little bit of distance. Because as we know, for anybody who's worked with someone with aphasia, you'll hear complaints that they fatigue really quickly, with extra noise and activity. And they're not going to be able to process and shift their attention from one conversation to the next. What are they going to do? They're going to feel left out. So, why not seat them at a spot. Or if you have a couple of tables going, be strategic and offer to them to sit at a, maybe a quieter section, or seat them next to particular people that might be quieter people. Don't put them next to the noisiest person in the room. [1:03:06] MBH: Or right by the kids table, right? [1:03:08] GR: You know you and you know what your family tradition is. Just think about it from the big picture view and what can be done. If they're in a wheelchair, and sometimes bathroom issues come along with a stroke diagnosis and aphasia. Well, maybe they need to be seated somewhere where they can get easier to the restroom. Or they can easily get to another room of the house after dinner so that they can recharge and have some quiet time. Again, that aphasia ally, your aphasia buddy, that can help be another set of eyes looking out for you and anticipating what's going on. It's all about strategy. [1:03:49] MBH: Yes. If you're not the host, if you're going to someone's house, these conversations and this planning can happen ahead of time. [1:03:55] GR: Absolutely. So, my live show on November the ninth was a letter to the host and hostess. So, this came from one of my friends who has aphasia, and she came up with this letter, not like a letter you put in the mail, but it could be an email or it could be a way to structure a conversation if you're traveling to somebody's home. This letter basically defines aphasia very simply, and what aphasia is for you, that you might need extra time or that you're only good for a few hours. If you leave the room, it's not because something's wrong. It's because you've gone somewhere quiet, so you can recharge, right? It's giving the host and hostess kind of a heads-up on what to expect from you. Because if you're the hostess and you have 20 people and you notice that somebody is missing, you're going to worry. You're going to wonder what's going on. Did something happen? Somebody get offended? Whatever the case may be. But what if you're the person with aphasia, and you write this letter and share it with your host and hostess, so they know what to expect because they're going to want you to feel loved and welcomed and accommodated and a part of the holidays. So, that's just one small thing, a family with aphasia can do, to help make the holiday aphasia inclusive. Then everybody's kind of on the same page, and we can avoid hopefully, embarrassment, pity, avoidance, isolation. For my friend, specifically, that I'm speaking of, her favorite thing is to go to a quiet place, maybe take the dog for a little walk in the backyard, or go outside, sit on the sun porch, whatever. If she can let the hostess know that before, that's one less thing the hostess has to worry about, making sure the dog gets outside. Because now this person is going to take that job. Does that make sense? [1:06:05] MBH: Two points I wanted to follow up on that gives the person with aphasia a job. We all have roles at holiday gatherings and some of us like to work. My nickname, when I was growing up was Made Mary. So, I like to work. Some people like to sit on the couch and watch the football game and let the action happen, and that's fine too. But if you're a person with aphasia, with someone who liked to be part of the activity, of the getting ready activity, that's so important for them to have some roles, whether it be setting the table, or taking the dog out, or whatever it is for that person. Along those lines, the second point I wanted to bring up is what you said at the beginning of that was the letter stated what aphasia is to them. Because the good news is, I think there is more understanding of aphasia. The flip side of that is people don't understand that aphasia is different for every person, really. [1:06:58] GR: That's right. What if we could just give a little education? Because then that hostess, who now has, is armed with this information, can maybe share it with a couple of other people that are coming. So then, they're armed with the information. And now, more people understand because one of the prompts on this letter is, how do I want people to include me? Sometimes, let's say it's a person with aphasia that's in a wheelchair. What if the kids that are going to be around? I see it as one extreme or the other. They are fascinated by the wheelchair and they want to understand how it works, and they want to try it, and those kinds of things. And then the others that avoid it. What if we headed that off at the past, and we can say to Sally and Katie, and whoever is going to be there, ÒGrandma's coming. She's in a wheelchair. But she still wants you to give her a hug and a kiss and sit in her lap. And she wants to see the pictures that you drew at school.Ó That's just a little something. Again, it's about planning, anticipating and planning, and getting people prepared for what to expect. And then grandma, being in the wheelchair, maybe she can still set the table. So, that's what she could say. Or she can still help the kids paint their salt dough ornaments. [1:08:27] MBH: Or maybe, that person with aphasia, it was a worker, but now they're fine not being a worker. [1:08:33] GR: Amen, whatever. We have to also think about, and this is so important, and something I really embrace in my practice, understanding who the person is and how they perceive themselves. How they were before and how they are now, that identity is so important. And sometimes just acknowledging it, having the conversation about it, helps them cope a little bit more, or find their new path forward. Because things change, when you have aphasia, there's a shift, there's a change. And as speech pathologists, we are in a really unique position to help them understand possibility and form. Not their next identity. I wouldn't want to say that, but help them almost reconcile who they were before, and who they are now, and help them make steps to who they want to be. Like you said, you gave the example. Maybe grandma was the one always doing the hostessing. Maybe she did all of it. And now she just wants to sit back and enjoy. That's a shift in her identity. So, how do we help her do that? Making sure the kids are comfortable with her finding things that she can do. How can she participate? [1:09:59] MBH: Absolutely. Because participation is connection, however that participation is. So, thank you so much, Genevieve. I think we're just Ð oh, yes, we're past time, but Ð [1:10:10] GR: I'm sure. [1:10:14] MBH: That's okay. Just really quickly, before we go, though, can you tell us a little bit about some of the resources for people with aphasia in their families? [1:10:21] GR: Sure. Let's see, where did I put those? Well, number one, my practice is a resource, whether it's one of the eBooks I have. What I've done is I've created a lot of PDF handouts, or eBooks about different topics that families are going through thinking, again, from the perspective of chronic aphasia. So, the Listen for LIFE Aphasia Podcast, this week, we just released Episode 66. I'm very proud of that. Consistency is what they say, you can relate with this being a podcast host. But the information and where I got a lot of my inspiration was from talking to families and what they needed to understand or resources that they need, whether it's an attorney, or if they need to hire somebody to come in, or how to deal with all this polypharmacy, whatever the case may be, or how to do some basic communication partner training. So, those are some resources. I would definitely encourage families to get on Google. If you think there might be something, why not check it out. See if there's something in your area. Find a support group, whether you're the person with aphasia, or the family is looking for support. Virtual connections. I'm not directly affiliated with them. But that is an online support opportunity for both the person with aphasia and families. They have different topics every month, and you can join those conversation groups. Whether you can talk or not, it doesn't matter. Everybody is welcome to participate. Virtual Connections is great because it's on Zoom. You are not limited by geography. [1:12:07] MBH: What a great resource. I had not heard of that. [1:12:09] GR: Oh, Virtual Connections is great. So, one of my episodes, probably somewhere in the 40s, I interviewed Allie Reed who oversees virtual connections. She's a speech pathologist. Works for Lingraphica, as well as Aphasia Recovery Connection. She's kind of got that dual role, and she oversees the Virtual Connection platform and helps organize, and speech pathologists can get involved. It's on my list. One of my clients loves to cook, and I love to cook. You've all heard that already. And so, working in his therapy, to come up with what we want to do for Virtual Connections. Episode, I don't know what they're called. It's on a class. Anyway, you get put on the calendar, you get assigned a time, you put your description out there, and people join if they want to come back. So, it can be that. There is an aphasia running group on Virtual Connections. I mean, if you can dream it, they have it, or they will have it. And if you're a speech pathologist working in this field, why not dig into it? It's all volunteer. There's not an obligation. You have to go through a little bit of training. It's awesome. It's an excellent opportunity for families. [1:13:26] MBH: Well, thank you for sharing that. Thank you, Genevieve. We really appreciate your insight and all the information that you provided about aphasia inclusion, at any time, and especially during the holidays. This will help people with aphasia and SLPs navigate the holidays and navigate life. Right? [1:13:45] GR: Absolutely. And I'm a resource. There's no reason you can't email me. If you're a speech pathologist and you have a question, I'm going to do like build it. You have a question, reach out. You can find me everywhere. I'm all on social media. The website is dolifespeechpathology.com. I probably should say I run the telepractice for SLPs Facebook group, not as many aphasia clinicians in that group, but it is related to telepractice. So, you can also reach me through that avenue if you're in the telepractice. Or if you want to get into telepractice with aphasia, happy to help provide you some guidance and some things to consider. [1:14:28] MBH: Well, thank you. Thank you so much and have a great day. [1:14:31] GR: You do the same. Thank you. [1:14:33] MBH: Thank you. [END OF INTERVIEW] [1:14:35] MBH: Thanks for joining us here at Keys for SLPs, providing keys to open new doors to better serve our clients throughout the life span. Remember to go to SpeechTherapyPD.com to learn more about earning ASHA CEUs for this episode and more. Thanks for your positive reviews and support. I would love for you to write a quick review and subscribe. Keep up the good work. [END] KFSP 77 Transcript ©Ê2023 Keys for SLPs Podcast 1