Dec 22, 2020
Show Notes - Episode 61
Something Sweet... LPA One Cupcake at a Time: A Conversation with Rick Lemoncello
Welcome to the Aphasia Access Conversations Podcast. I’m Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. I am privileged to introduce today’s guest, Dr. Rik Lemoncello. We are fortunate to have a conversation about his work on supporting adults with acquired brain injuries in the Sarah Bellum’s Bakery & Workshop.
Rik Lemoncello, PhD, CCC/SLP (he/him/his) is an Associate Professor in the School of Communication Sciences and Disorders at Pacific University, Oregon. His work focuses on developing creative solutions to support adults with acquired brain injuries, interprofessional education, and the scholarship of teaching and learning. He founded and directs a non-profit program, Sarah Bellum’s Bakery & Workshop, in Portland, Oregon. He serves on the ANCDS TBI Writing Committee, and speaks regularly at local and national conferences.
Jerry: Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner, a faculty member in the Department of Communication Sciences and Disorders at the University of Wisconsin - Eau Claire. I'm privileged to introduce today's guest, Dr. Rik Lemoncello. We are so fortunate to have a conversation with him today about his work in supporting adults with acquired brain injuries in the Sarah Bellum's Bakery and Workshop. Dr. Lemoncello is an associate professor in the School of Communication Sciences and Disorders at Pacific University in Oregon. His work focuses on developing creative solutions to support adults with Acquired Brain Injuries, interprofessional education, and the Scholarship of Teaching and Learning. He founded and directs a nonprofit program, Sarah Bellum's Bakery and Workshop in Portland, Oregon. And he serves on the ANCDS TBI writing committee and speaks regularly at local and national conferences.
Jerry: Well, good to see you today, Rik, how are you doing?
Rik: I'm doing okay, hanging on, you know, COVID-19. It's a day by day week by week process. But...
Jerry: Absolutely. This has been an interesting several months. So, we've all learned a lot.
Rik: Yes. Thanks for having me here. Jerry. I'm glad we could finally make this connection.
Jerry: Likewise, I'm really excited to have this conversation. So, I'm really excited to have a conversation about Sarah Bellum's and the work that you guys do. Before we dive into that really cool conversation. Just as kind of a tradition in my talks, my podcast, I should say. Can you talk a little bit about your mentors and influences?
Rik: Absolutely. I think generally, McKay Sohlberg, who's at the University of Oregon is one of my primary influences. And before I knew her, I was a clinician working at rehab hospitals in the Boston, Massachusetts area. After completing my Master's in Boston at Emerson College, and I hadn't had a lot of background in cognitive rehabilitation. So, after working on the TBI unit in the hospital, one summer, as we do in Boston, we either tend to go up to Maine or down to Cape Cod for the summer, and I tended to be a person who went up to Maine. So, one summer I grabbed McKay Sohlberg and Katie Mateer's textbook on cognitive rehabilitation, brought it with me to the beach, and read it pretty much cover to cover in a week with so many aha moments. And then after reading that and being awoken to the wonderful world of cognitive rehab, I had the chance to see McKay do a live conference in Boston about the next year and I decided then in there that she was someone I wanted to continue to pursue my PhD with. And the rest of that was history. I moved out to University of Oregon to pursue my doctorate. The other person that I met along the way is Lynn Fox, who's now retired. She worked at Portland State University for many years after her work at the Portland VA. And Lynn Fox really is my inspiration for this work at Sarah Bellum's bakery. In my first year at Portland State University, Lynn Fox was running the then called Aphasia Stroke Camp Northwest and invited me to come to camp one weekend and I said, Lynn, I would love to do that, but I don't camp, and I really don't want to sleep overnight in a tent or a cabin. So how about I just come for a day, and she agreed. And it was very eye opening, and wonderful to see speech language pathology and occupational therapy and psychology students all working together in this interprofessional context before interprofessional was even the term we were using. And the focus was not on their impairments or their aphasia. The focus was on camping and having fun. And I said, Lynn, this is an amazing program that you've built. Your population your focus is adults with aphasia and camping is something that you do well, what can I do? I love the acquired brain injury, cognitive rehab population, and I love baking. So, there in 2008, was born and hatched this little idea to one day create a bakery program that would support adults with brain injury. So, to answer your question, I would say McKay Sohlberg and Lynn Fox were two, are two of the people who have really influenced me.
Jerry: Well, those are two pretty terrific people to influence and to grow and learn from. I want to say I think it's pretty funny that you brought along a textbook on cognitive rehabilitation to read on the beach. I admire that kind of thinking very much. That's terrific.
Rik: That is the geek that I am.
Jerry: I'm right there with you. So, I went on a cruise with my wife and in my, in my backpack there was a similar book one time and she's like, really? That's what you're bringing along on a cruise. That's, that's really great. Yeah. So, nerds rule.
Rik: Exactly. Two years ago, I read a brain injury survivors personal account story while I was on a cruise, so there you go.
Jerry: Nice. Perfect. That's terrific. Yeah, and I got to say Lynn Fox's work obviously inspired the camp that we run in Wisconsin as well. So, I'm very inspired by her work and what just what a brilliant individual she is. So, what a terrific lead in to you talking a little bit about Sarah Bellum's. You talked broadly from an inspiration standpoint about what led to the idea of Sarah Bellum's. Can you talk a little bit more specifically about that and how that all kind of started to formulate?
Rik: Absolutely. So literally, it's been on the back burner, plenty of food references along the way, since 2008, as I said, when I met Lynn Fox and went up to camp, and that's where this idea really hatched that one day, I was going to marry my two passions of brain injury rehab and baking. So coincidentally, I've always been a baker and I really started baking cakes when I was in graduate school. So I've been an SLP for about as long as I've been cake baking. So, these two really do go hand in hand for me. And so that idea hatched in 2008. It's been percolating for many years, and I've been trying to find potential funding sources. It's not a traditional research project or research grant wasn't really the avenue I was going to pursue. I've been sort of poking around looking at different foundation grants along the way when I've had the time. And then this wonderful opportunity presented itself to me. And one of the themes for me and for Sarah Bellum's Bakery and Workshop is serendipity. And as our bakers and participants like to say, this project just wants to happen. So, serendipity has led a lot of the initial work and continues to inspire us. The serendipitous thing was in 2016, I was named the Tommy Thompson, distinguished professor of education in the College of Education at Pacific University. And this wonderful honor came with a stipend, an endowment to essentially develop any scholarly program that I would like with the approval of the dean to advance my scholarship and continue to promote to the College of Education. So, I had some funding, I had the opportunity to pursue any scholarly project. So, I graciously accepted this award, of course. And I had some ensuing meetings with the dean, and I pitched several different ideas around Scholarship of Teaching and Learning, around assistive technologies, and around this idea of developing a bakery program. And the one that I really wanted to pursue, of course, was the bakery program. And so, lo and behold, the dean bit, there's our other food analogy. And said, that sounds like a fantastic idea. So, there was the hatching of this idea, and the rest has sort of been history. What do you want to know next?
Jerry: Wow, that's terrific. It truly sounds like it was destined to happen for sure. As long as we're talking about kind of how this got started from kind of a startup standpoint, from a philosophy, your idea what we wanted to accomplish standpoint, maybe we'll move into that, talk about some of the specifics of the program. Like, you know, what your theory and kind of grounding principles were, those sorts of things, and then we'll kind of work into, you know, some more details.
Rik: Absolutely. So cognitive rehabilitation, and systematic instruction, and supported environments, life participation approaches, all of these are sort of my foundation with a heavy foundation and systematic instruction, and participation approaches for something that's functional, relevant and meaningful. We can come back and talk about how I came to these aha moments later if you'd like. So systematic instruction, brain injury cognitive rehabilitation, and cake baking. How could we actually marry these two? How could I actually develop a program that takes something very specific, very precise for baking and developing cupcakes without being an occupational therapist ,without being a physical therapist, without being a psychologist, without being a social worker, you know, and from my background as a speech language pathologist in cognitive rehab, and develop a supportive environment, maximizing external supports? Going through the task analysis of what does it actually entail, to go through baking from start to finish, from setup all the way through packaging and cleanup? How are we going to think about pacing for supporting our folks with brain injury? How am I going to think about the language that goes into formulating the recipe? How am I going to go about teaching concepts and specific skills that aren't necessarily going to be a part of the recipe? How am I going to help folks learn to navigate in a small professional bakery space, visual spatially, as well as the social communication aspects that go into building a team and collaborating in a functional communication workplace setting? So again, this foundation and systematic instruction, really thinking about task analysis, how do we break down? How do we analyze all of these components’ skills? How can we then maximize routine and external supports to provide the cognitive orthotics, the cognitive supports, the cognitive crutches to help our clients succeed? And how can we ensure success and use that success that behavioral momentum Mark Ylvisaker's work, to continue to develop and motivate clients to want to continue to move forward? So, to answer your question, I think the influences and theoretical approaches their systematic instruction, life participation models to, again not focus on the impairment. But think about what is the actual activity that we want folks to succeed at? How can we build in the routines, the external supports to make that happen? How can we make it motivating, interesting and fun and collaborative. And I started small. So, anyone wanting to do something like this, I'd be happy to talk about that process too. And starting small, we did just a pilot project the first summer for six weeks. We baked one day a week, we went to a local farmers market one day a week, for six weeks, just with four folks with brain injury and four graduate students working with them one on one and learned so much from that initial pilot program. That gave us then a year to pause, and reevaluate, and reconvene and develop better strategies, better tools for when we started again the next summer with round two.
Jerry: Wow, that's terrific. I mean, that's a really complex, but really well thought out framework to underpin all of the work that you do, I mix, really excited to kind of hear about that aha moment. I appreciate that you weaved Mark Ylvisaker's work in there in terms of the authenticity and contextualized work that you do. And just to highlight that point for our listeners of starting small, and you know, evaluating and continuing to learn from those experiences so that you can continue to grow as you have. Well, we hit me with it. We hit me with the aha moment. I got to hear it.
Rik: Thank you, Jerry. And unfortunately, I've already forgotten what I said. So, give me a quick reminder, and then we can rerecord that little segment.
Jerry: Oh, that's, yeah, absolutely. You said…
Rik: I had several aha’s,
Jerry: I'll hit you with the aha moment about when I learned about this kind of philosophy of a systematic instruction, and yeah.
Rik: And, life participation, let's go with life participation. Yeah, ask me that again.
Jerry: So, as I said, hit me with it. Like what is that aha moment that brought all of these ideas’ life participation, systematic instruction, meaningful interventions together?
Rik: Yeah. In addition to my work with Lynn Fox, my first year on faculty at Portland State University, a big shift in my own professional development. All of my clinical career has been in acute care and inpatient rehabilitation. So really, those early weeks after a significant brain injury. I dabbled a little bit in skilled nursing and an outpatient care, but really, my focus had been on acute care and inpatient rehab. Throughout my doctoral program as well, and when I came to Portland and started working at Portland State University in 2008, I really got involved with the support group community. And getting to meet and interact with people who are 10, 15, 20, 40 years post brain injury, gave me a whole different perspective that I never had that I never could appreciate when I was working in the acute care hospital and inpatient rehab, when patients had not yet been home to experience their injury, when everything was still brand new, and though we're still in a major period of course, adjustment to living with a brain injury. So, getting involved with the support group community and this population of folks with chronic challenges, and yet still finding joy and meaning and purpose in their lives, while also talking about the actual functional day to day struggles, and lack of resources. So, for me, in addition to what I knew, theoretically, it was really getting involved with working with people with chronic challenges that gave me the opportunity to pause and reflect and say, "Hey, wait a minute." Now that I understand better your perspective, your lived experience, how can I better support you as a speech language pathologist and clinician throughout this entire continuum?
Jerry: Wow, that's a terrific story. I gotta say, I've had some parallels to your progression in my career. I started out working in acute care and acute rehab, from the get-go as well. And like you said, working with support groups is what really changed my way of thinking about things too. I can remember reading Mark Ylvisaker's words about the patient as the expert and thinking I got it until I got it. That was a little deeper, a little broader than I had first given it credit for. So absolutely, that's where the rubber meets the road and those long-term chronic needs. And, and you phrase that so well. I'm excited to dig into this a little bit more. Can we talk a little bit about kind of the logistics of running the Sarah Bellum's bakery, everything, from staffing to supplies, and volunteers, and physical location, all of those things you kind of alluded to earlier?
Rik: It ain't easy. Start small. I've learned so much along the way. Because of course, first and foremost, I am a speech language pathologist, and I am a professor. And that is my primary identity. And that's what I know and love. And where I perform the best. It's where I have the most self efficacy for myself. I am not a professional chef, I have never worked in a professional kitchen. I am also not a businessperson. I've never started a business before. This is a nonprofit company. I've been involved with many nonprofits along the way, in various roles. So, setting up and leading a nonprofit program, we started as a small program before we broke off and became our own independent nonprofit organization in 2018. That work and the legalities around nonprofit work I had had experience with and that was not a steep learning curve. But actually, figuring out how to work and navigate in a professional commercial kitchen, how to get a bakery license, how to follow all of the proper food handling procedures and food safety hygiene and how do I supervise and make sure that all of the graduate students and helpers and bakers with brain injury are constantly following all of the proper hygiene and food safety. It requires a lot of vigilance on my part, to be consciously, continuously aware of everything that's happening. So, there are many logistics I've learned along the way, most of it through experience, which means trial and error. Most of it with trial and success, luckily, and that's my systematic construction background coming through again. I try to task analyze and think of all the things that could possibly go wrong before we walk into a setting so that I can be present to support my other crew. So again, starting small as we ramped up, I learned so much. We worked in three different commercial professional kitchens along the way, just rental spaces called commissary kitchens. And these are set up for pretty much startups to come in when people don't have the need for a full kitchen space yet, and you can rent space, and use all of this shared equipment and follow all of the processes. One of the things I knew going into that was that that would be distracting for our population. And by the way, most of the folks that I'm working with are presenting with mild to moderate cognitive communication symptoms, even though 95% of them have had severe acquired brain injuries. So even with mild to moderate symptoms and thinking about return to work as a purposeful, meaningful life activity, I knew that working with a broad population would have successes and challenges that come with it one of those being distraction. So, learning to live with all of the varieties of music that are played at various volumes in professional kitchens, navigating through space with other professional chefs that don't necessarily have background from a therapeutic standpoint supporting folks with brain injury. So, I did a lot of upfront training with our helpers. As we started off, these were graduate students in the SLP program at Pacific University. This was one of their practicum experiences. So being sure that I took the time to train the students up front so that they knew what they were going to do and how they were going to support the baker's all the way through to being continuously vigilant again, and constantly monitoring everybody. That was one of the logistics I had to learn along the way. And it is exhausting. At the end of the day, in addition to all of the physical labor, I am a professor. I spend most of my time sitting in my wonderful office chair, or sitting in meetings. That's the life of a professor. So just being physically active again, in a kitchen constantly picking up and moving heavy items, our mixers that weigh 40 pounds, bags of flour that weigh 50 pounds, and being on my feet moving around doing dishes, I love doing dishes. So that's one of the things that I like to do in the kitchen to keep things moving along. Where was I going with this tangent? Logistically things that I've been learning. Yes, it's a physically challenging job to work in the kitchen as well. So, I had to learn all about nonprofit management, I had to learn how to set up food handlers’ cards and acquire our bakery license and make sure that I am ensuring that we're following food safety precautions. I had to figure out how to set us up at farmers markets. Farmers markets are wonderful community resources, but they're also really logistically challenging to set up and take down every week. And to have all of the appropriate equipment to be able to efficiently move in and move out of a space because you're not the only vendor, they've got 50 to hundreds, depending on the size of the market, 50 to 100 different vendors trying to come in and set up all at the same time and 40 minutes before the market opens. So, there were many logistical challenges there. In addition to all of the logistical challenges of figuring out the actual baking process, how to make a logical flow to a day and work in breaks, and also figure out what the easier tasks were and what the challenging tasks were and how to modify those. So, one example is we do all of the prep work ahead of time before our folks with brain injury come into the kitchen. So those are some of the less safe things like chopping, any knife skills we are doing ahead of time, for safety and liability. Also, some of the more challenging fine motor, visual spatial tasks, like putting the cupcake papers into the pan. Those sticky little cupcake papers are really hard to separate. And when we got started, it would take our crew about 30 to 40 minutes just to put the papers into the pans. So that was not an efficient use of our time. And then they were wiped out and drained. So just figuring out along the way, where and how to best prioritize different tasks. Does that answer some of those questions about logistical?
Jerry: Yeah, absolutely. I was thinking it's kind of ironic that you're helping people with executive dysfunction and need the best executive functions ever just to pull all those details off. Wow.
Rik: Absolutely. Yeah, I like to say and remind the students who are there learning about all of this that I am the executive functions and the person in charge is the executive functions of that kitchen and you have to prioritize, you have to manage, you have to delegate, you have to make decisions. You have to have the big picture and the details. Be vigilant, yeah.
Jerry: Now that is so well said when you said, “I am the executive functions, and those students are the executive functions.” Makes me think about Mark Ylvisaker's framework on apprenticeship and self-regulation and how you must model that self-regulation all day long to not only to people with TBI, but your students. That might be the perfect segue into talking about students’ roles and kind of your role and training them all of those things.
Rik: Yeah, I wear many different hats in my involvement at Sarah Bellum's Bakery and Workshop and one of those hats is as the program director, and that is my volunteer work handling logistics and making sure the bakery is up and running. One of the other hats that I wear through my professor hat is graduate student education and training. So, this has become a clinical practicum site at Sarah Bellum's Bakery and Workshop for students to come gain experience, for many of them their first time working with an adult with an acquired brain injury, and getting to see this wonderful range of symptoms, everything from sensory processing challenges, auditory processing, challenges, hearing loss, through the motor difficulties, balance, ataxia, spasticity, hemiparesis, as well as dysarthrias. And all of the cognitive communication challenges that come along with that, and we can really see I've enjoyed working with students in this context, we approach it very differently from a traditional setting, where in a traditional setting, you might start with formal assessment, and then move into treatment and get to some more functional things. So, we do it exactly backwards. We start with very functional activities, and students come in on their first day and just observe, how is their assigned client, their baker doing with the task of baking, and how are they doing at breaktime with social interactions, and they just observe for the first one to two sessions, and take it in and try to put some vocabulary and match up the knowledge they have with their actual skills that they're observing. And then they work and develop a treatment plan to support that person and make some goals about how they can help to scaffold and then fade the supports, over the course of a semester to help a person reach some part of their baking goal, to become more fluent, to become more independent, to master some of the recipe techniques, through repetition and practice and a lot of scaffolded support. And then at the end, we do this for the benefit of students gaining the experience, not because the bakers need to do this every semester, at the end, the students do a formal cognitive assessment. So, they've had all of this experience already. And then they do the standardized testing. And they say, "ah, yeah," what surprised you?, what didn't surprise you?, in terms of what might actually come out on a standardized assessment. And that's been for me a wonderful paradigm shift in thinking about student training and student education to really hone those observational skills right up front and challenge what we can and can't learn from standardized norm referenced tests. So that's one role that I've had with our SLP graduate students. Again, as a practicum site assessment, treatment, goal setting, goal planning all the way through a semester, I've also had the opportunity to have occupational therapy students come work with us and to inter weave interprofessional practice. So, we usually do a weekly meeting with our OT and SLP students together. When we're there on the same day, we're asking for an OT consult or an SLP consult so they can see the different lenses. We're all working on cognitive rehabilitation and cognitive supports, but how does an OT lens differ from that functional cognitive perspective and sensory visual processing? With the SLP lens of cognitive communication? And where do they meet? And why might we want to refer to one or the other throughout that plan of care? That's my professor hat.
Jerry: That's a pretty terrific description there. I just think about what an awesome contextualized experience those students are having. And I love the way that you framed or describe that framework of students doing the observation and working alongside of these individuals, and then doing the assessment, that standardized assessment later. And just that opportunity to see, you know, like you said, what makes sense here? What am I a little bit surprised by what are those limitations and abilities of those standardized tests? What a great way to really truly understand that because we can talk about it, but to see it as something completely different,
Rik: Especially in that functional milder, higher level executive dysfunction context because they will ace the standardized norm referenced tests.
Jerry: Well said, absolutely. But in a real-life context with all of the demands of the environment and the emotions and all of the people around them. Things are very different. So absolutely. What a great way to see firsthand. Terrific. You said something that made me want to go off on a tangent. I don't know if that's because we're talking about TBI, but you talked about the people that you work with the people in the bakery restaurant business, the shops and things like that. At aphasia camp, we talk about the ripple effect that that has on, you know, the people that come in leading sessions and things like that. Have you seen a ripple effect in terms of those individuals learning about brain injury and learning about the framework of kind of a social participation approach?
Rik: I think I understand that question. I'm going to answer it in two ways, if my working memory will hold on with me. One is identity for the person with brain injury themself. Referring to our crew as bakers, or salespeople, because we have backup house where folks are doing the baking, we also have front of house where the sales are happening in restaurant lingo. Some folks only work in the back, some folks only work in the front, sometimes people do both. So, we referring explicitly from the beginning, we decided not to use client, or participant, or volunteer, certainly not patient in this context. But "baker" organically came out from that initial pilot work. And it's been really fun to observe, we had three out of the four bakers who started with us four years ago are still with us. One dropped out because of other life demands. And to see their identity formation, and recreation, and re-development all tied to this idea of self-efficacy, developing strengths, feeling success, all back to Mark Ylvisaker's work here to Ylvisaker and Feeney and identity formation and recreation. Our crew, our bakers are actually identifying as bakers, right. And these are people who had never baked before, baking was not their life goal, but participating and having something meaningful to do. And a place to go, a place to feel safe, a place to feel accepted, a place to feel like you didn't need to explain your brain injury, has all become part of that. And we've got a manuscript in process hopefully coming out soon, we've submitted it to the journal work with my colleague, Sarah Foidel, who's an OT faculty, using an OT lens to look at this, how a functional task like baking, like a work task, helps to improve doing, being, belonging, and becoming this OT framework lens. So, by doing and getting better, you have this sense of being, and that turns into this sense of belonging, and then the sense of becoming, and reformulating this identity. So that's been a really fun theme for me to observe and to continue to develop and think about other ways we can help folks with this identity emergence, and really this idea of self-efficacy and feeling good. The second way I was going to talk about that question was the ripple effect on the community. I think that might be what you're referring to as the ripple. So, getting involved with the farmers market had this wonderful way of engaging our bakers and folks with brain injury in a whole new way and reaching the community in a whole new way that I had not experienced before. Right. People go to the farmers market, not because they're going to learn about a medical condition. People go to the farmers market because they want to chat with the vendors and buy their supplies. And so, lo and behold, the first farmers market we went to happens to occur at a hospital, a big, big hospital in Portland called OHSU, and every Tuesday they do a farmer’s market outdoors in the summer. So, I didn't even know it existed. I looked on the list of farmers markets, and I said that's the perfect one for us to try to start off with and the community of people, just coming by hearing the story from our bakers firsthand, "I made these cupcakes", I am proud of this work, and let me tell you a little bit about brain injury while you're here. Every farmers market we went to so that first summer we did one a week. The second summer, we were doing up to five a week, five different markets as we were growing and expanding and taking it to scale. Every market we went to there was not a day that went by when someone did not have a personal connection to brain injury. Right. And we talked about this and that was great for the students to see too. We talk about this, that brain injury acquired brain injury is such a big population. And many people have some kind of connection, a mild concussion, uncle, a family member who's had a stroke, someone they know has had a brain tumor, a colleague, a coworker that was involved in a car crash and had a TBI, high school friends. It is so prevalent and so pervasive and the reception from the community throughout has been nothing but positive. And folks seeing how brain injury is so unique from person to person. One of our Baker's has significant dysarthria. And his intelligibility, I would say is probably 50% to an unfamiliar listener. And yet he is so social. He was our front face of the bakery at one of the local farmers market and he developed groupies who would come back each week just to chat with him and hear what he was up to, to see what cupcake he had made that week. He also has significant ataxia by the way and has made so much amazing progress in the three years he's been working with us. He now makes our cupcakes and frosts and garnishes, does all the decoration on our mini cupcakes that we distribute to a local grocery store. And not everyone gets to do that. And so, imagine someone with severe ataxia, intention tremor. Initially, he would just mix our ingredients, I'm getting off on a little tangent, but he's a really powerful story. Initially, he would just mix the ingredients, and he didn't want to scoop the batter because that was too challenging. So, we worked with him hand over hand, did some modeling and support and he learned to scoop. But he didn't do any frosting. So, he went from just mixing, then we added in scooping, then we added in making the frosting then we added in and this was over the course of the first year. Then we added in frosting and learning we do one technique, we do a swirl technique on almost all of our cupcakes and learning to master that with an intention tremor ataxia, hand over hand, the benefit of motor learning, boy did that pay off hand over hand, modeling, fading that over the course of six months, he learned to frost on his own. But he didn't garnish, that was too much of a fine motor task. And eventually, he's now at the point where he's doing our mini cupcakes, which are harder to do and garnishing them in the benefit again, of this systematic, repeated supported learning. Folks can learn.
Jerry: Wow, I am still patting down the goosebumps, Rik, just amazing I, I could have 42 follow ups, but I just want to highlight a couple of things you said. I love the terms, bakers and salespeople. That idea that it's not a person with a brain injury, and it's certainly not a patient, it's just so important. And you highlighted Ylvisaker's principle of renegotiating identity and having a purpose and a value. And certainly, these individuals from what you've described do. Is it okay, if we share some sort of a reference to that forthcoming article in the journal of work?
Rik: Sure. I'll send you the link. It's been submitted. So, we're awaiting a decision.
Jerry: Terrific. And I didn't even know there was a journal of work. But that makes sense. So I wanted to highlight that framework of doing, being, belonging, becoming. What a terrific, insightful framework that really aligns with LPAA. And I think our our listeners will definitely appreciate moving along that continuum and your illustrations, your stories cover that perfectly.
Rik: Yeah, it's apparently a pretty well understood and accepted framework for occupational therapists. It was new to me, but should be pretty part and parcel for most of our OT colleagues.
Jerry: Well, that speaks to your point earlier about interprofessional education and the reason we need to have our eyes and fingers in those OT journals as well to learn those things. Because that that's so insightful in terms of the work that we do, and certainly the work that you do in this context.
Jerry: I was gonna ask you to share a little bit about the people and the outcomes, and you kind of started doing that. Can you talk a little bit specifically about speech and language, cognitive communication outcomes in those contexts and any broader ones too? We'd love them all.
Rik: Absolutely. So, we're doing ongoing program evaluation as part of this nonprofit bakery program. Along the way, I've been sort of adjusting and figuring out with the boards, how we are operating and what we are expecting out of our different crew. So initially, the goal was really for folks to come through our training program and graduate and move on into another paid employment. So, our bakery program is really looked at as a pre vocational model. Most of our crew are volunteers and coming in to get this training and opportunity. Along the way, as I've been interacting with more and more folks, we've had about 50 different bakers, salespeople, folks with brain injury come through the program, with varying ranges of cognitive communication challenges. So, along the way with our 50+ folks, we've had three graduates. And when I say graduates, those are three folks who have gone on to other successful competitive paid employment. And if you look at the vocational rehab literature, paid employment is really this gold standard idea of meaningful outcome when it comes to return to work. And full time being that ideal goal. So, we've had three folks successfully graduate from our program. One of them, Leslie, has a testimonial on the website, www.sarahbellumsbakery.org. You can watch her little 10-minute video story, she actually worked as an audiologist for many years before her series of strokes. And then with a series of six strokes over a short period of time, was unable to return to work, had significant interfering cognitive challenges with attention and with word finding and a mild aphasia. And it wasn't until she came and experienced success and got this idea that she could actually do it, she could return to work, she actually quickly moved up the ranks from being a salesperson to a baker, to a person in charge and helping to manage the front of house because of her ability to benefit from the structure and continue to grow. So, she's got a great testimonial on the website. Two of our other graduates, again, moved on, got that confidence, I think that's a big one, the confidence, the experience, the awareness, the ability to integrate that with how to use and adapt their strategies. I can go off on a tangent here too, you got to have a purposeful, meaningful opportunity to use these strategies. And when we're working in our traditional therapy settings, we can drill and talk about how wonderful it would be to use these in everyday real life, but again, I've seen folks with significant memory challenges start to use their external tools much more successfully and consistently now, with an actual opportunity with natural consequences. There are consequences when you don't show up to work. And that affects the entire team. So that was a little tangent about functionality. Where was I going?
Jerry: Um, let's see. I think just thinking about outcomes in general,
Rik: Ah yes, outcomes. We can delete that little segment. Yeah, our other ways that I've been starting to reconceptualize outcomes is not only thinking about competitive employment, paid employment, but also how we can continue to be a place that will support long term volunteer, prevocational, social opportunity, life participation for folks with cognitive challenges. Along the way, I've been reading and learning and collaborating with vocational rehab counselors as well, and the vocational rehab model of supported employment. The philosophy is that anyone can work, and anyone can have a supportive employment, paid employment opportunity. The challenges of getting that to happen for folks with brain injury are real and significant though, which is one of the reasons why I created Sarah Bellum's bakery just because there are not many opportunities for adults living with cognitive communication challenges after brain injury as you know. Where was I going with this tangent? So vocational rehab, this idea that anyone can work in a paid employment. It takes a lot of support. And it takes a lot of work to create a supported setting where folks feel empowered and want to come back to work and want to be able to participate and engage and having this therapeutic mindset and understanding about acquired brain injury and the number of repetitions the amount of systematic instruction, how to provide maximal cueing and support initially, how to do that while supporting the person's self-efficacy and confidence and self-esteem. And how to do that in a way that builds skills. I have found really requires some clinician clinical knowledge of cognitive rehab, and it's really hard to train a paraprofessional, a non-cognitive rehabilitation person to provide that level of support, to really help the person be successful. And of course, with brain injury, especially when we get into more significant challenges, generalization is always going to be a challenge. So, you change and get a new boss, you change, and you have a new work setting, they change the system, they change the process, that's going to be challenging when someone has executive dysfunction, memory challenges and significant cognitive challenges, so being able to provide that ongoing support is also important. And folks with brain injury don't typically get ongoing support through vocational rehab.
Jerry: Yeah, wow. Those are some pretty terrific outcomes. And I want to emphasize this fact, you said, you know, gainful employment, preferably full time is the ultimate kind of gold standard. But this is an opportunity for people to do something meaningful, and something that does rebuild identity, and purpose. And so, what a, what a terrific outcome and just look forward to hearing and reading about more of those over time.
Rik: Our vision for Sarah Bellum's Bakery and Workshop with that hat on as the program director there, the vision of the nonprofit organization is to see people with brain injury in paid gainful employment for every person with brain injury who wants to work. And that's our pie in the sky vision, of course. And one of the ways that I will continue to work on that with my also professor hat on is I'm very interested in continuing to collaborate with vocational rehab and help to get the word out about cognitive supports and cognitive systems that can help support adults with acquired brain injury.
Jerry: Well, you certainly have a lot of experience to draw on for that, so that's terrific. So, with all of these experiences, certainly it's changed you as a person and the way that you look at things. I'm wondering about how that influences the way that you teach, the way that you think about cognitive rehabilitation, both of those things with this new lens.
Rik: It's a blessing and a challenge. Let's say, the more you know, the harder it is to teach. As much as I love cognitive rehabilitation, and I have a class dedicated to acquired brain injury, I'm very fortunate at Pacific University as a relatively newer programmer in our eighth year. In our graduate SLP program, I came in at the beginning and helped to design the curriculum and said, I want a class in acquired brain injury and my colleague, Dr. Amanda Stead, said I want a class in progressive, neurological injuries and dementia is her specialty. So, it's pretty unheard of, to have a separate class on aphasia, a separate class on progressive neurological impairments and a class and acquired brain injury. So, I feel very fortunate that I get a whole graduate class in acquired brain injury and cognitive rehab. That said, it's the hardest class that I teach, because it is my area of expertise, right? So, Scholarship of Teaching and Learning and thinking about how are we actually going to distill down I want them to know everything that I know and have all of my experiences. But how do I actually prioritize? What are the essential things that they really need to know, what's interesting to know, and what's not relevant? So, I think a lot about that my teaching has changed for many reasons. Over the last 12 years I've been in academia and trying to constantly distill it down is one of those thoughts but how has Sarah Bellum's changed my teaching, in addition to getting involved with the support groups and having this really functional life participation, purposeful activity, lens, return to work is something that is much more on my radar now. And when I talk about acquired brain injury, a really honing in on who are the peak incidences of this population to? Adolescence, working adults, and the elderly. Falls, falls, crash, motor vehicle crashes, sporting events, especially for TBIs. So, adolescence, just working on getting through high school transition programs with more severe challenges and entering a workforce. How are we going to help support them through entering the workforce? That's a very purposeful, meaningful life participation goal. Someone in their 20s, 30s, 40s, 50s, 60s, right at their peak in their prime of their working years. Yes. 60s, 70s? Yes, we don't judge. People are working throughout the lifespan. And that's a major part of our identity, and Peter Meulenbroek's work has helped inform this. And he's on our ANCDS TBI writing group as well and chairing that committee currently. What is the purpose? And how do we identify work? as working adults, it's one of our primary identities. I am a speech language pathologist. That's the first way that I identify myself. And if I was not able to return to that, that would be a major reframing required for my identity. So, thinking about return to work, how can we continue to think about return to work as one functional, purposeful, meaningful activity to help our clients get back to regardless of where we are along the continuum of care. If you're working in acute care, inpatient rehab, outpatient, community care, skilled nursing along the way, one of the challenges might be identifying functional goals. So, in addition to the ADLs, IADLs, things that they might need to be able to do to take care of themselves at home. How can we also help to support them in a process to return to work and accessing other community resources like vocational rehab, like a program like Sarah Bellum's Bakery and Workshop, which, again, is why I founded and created this program, because nothing else like it existed. So maybe a little tangent also, may be part of my big picture goal is to inspire others, to want to pick up similar programs and there's no magic in baking, it doesn't have to be cupcakes. It's about finding something that you're passionate about, and helping to create processes that will support folks to have the opportunity.
Jerry: Well, that's a terrific transition to my final big question. And I think you also talked about this idea of starting small before. So, what advice would you give someone who has a big idea like you just to bring it to fruition, as you did?
Rik: First of all, amazing, fantastic. Find another person, at least one who has a similar passion that can help you to initially develop. So, I was fortunate, I was part of another nonprofit organization called Brain Injury Connections Northwest, which ran several support groups. And through that I was the secretary of their board at the time. Through that work, I had the connections, I had some infrastructure to help think about creating this bakery program. That was critical, find collaborators. My occupational therapy colleague, Dr. Sarah Foidel, has also been instrumental, not only in bringing that OT lens, but in helping to think about and shape processes that support our folks. Third, would be funding. There's a lot of startup funds required for any similar startup program. We required startup just to buy some of the initial equipment, we needed mixers, because the mixers that they had at the rental kitchens we were working at, were really small and broken down. And so, we invested in some larger mixers. We had to have money to buy our ingredients, to buy the tent that we needed to go to the farmer’s market. So that kind of infrastructure. As a nonprofit, we could also engage in fundraising, so when we actually got in our brick-and-mortar shop in southwest Portland, we held a big fundraiser to help raise funds for that. So, I don't know if I'm answering your question, big picture, I would say one, find some helpers, people who are also passionate about your idea, two, find some funding, and three, take it slow and give yourself grace. You will have a lot to learn along the way. We are speech language pathologists I'm assuming that's most of your listenership here. But I am so open and so enjoying learning something new. As I often try to tell my students too in cognitive rehab or in language aphasia therapy and motor speech disorders, it's all similar. When you get to work with adults, you're not going to be the expert in their life. They're going to be the experts in their life, and they come from all different backgrounds, and experiences. So, we have the lens to think about communication and cognition and speech and language to help them frame that. But my clients have taught me so much I worked with a guy who invented the flat screen TV and worked with a wood shopping person, you know, high school gym coaches, preschool teachers, the whole gamut. And you don't have to be an expert in any of that, right? Because they bring that expertise and knowledge, but we're helping to find that lens through which to view cognitive communication to help give them tools and supports. So, you also, if you are in venturing on a new endeavor like this, don't need to be the expert in all of those areas, but find the people to help you with all of the logistics and give yourself grace to take it slow. We started very small. And in our fourth year, now we're operating a full-time program. And of course, COVID-19 is a whole different story. Everything changed in March of this year, we don't have time for that story.
Jerry: Well, what terrific advice and you have offered so many insights, not into just running a cupcake shop, but into life participation and applications and extensions of that to individuals with acquired cognitive disorders. So, we are just so pleased to have this opportunity. Anything that we missed, anything that you want to get back to that we didn't get a chance to talk about, Rik?
Rik: I'm sure there are things, I'll just highlight and say that it's not about the cupcakes, right, and the public education that's come out of this too and public walking into the shop, walking by the shop and just the name, Sarah Bellum's, that was one of the initial investments that we had also to hire a marketing person. That was the best $3,000 we spent for someone to come up with the name Sarah Bellum's Bakery. Of course, it's a play on words, and when we talk about it, it's fun to see customers say, "who is Sarah? Is she hear?" I say "no, Sarah is not a person." One of our bakers, I'll end with this story. One of our bakers said it best he loves to play on words, with mild executive dysfunction, really one of our star bakers. At one of the first farmers markets, someone asked, "who is Sarah?" and his response was, "you know, she doesn't like to be in the limelight. She stays in the back, but she keeps us all coordinated." How's that for a description of Sarah Bellum?
Jerry: Wow, that is terrific. That might get an A on one of my exams, one of my neuro exams.
Jerry: Well, thank you so much, Rik, this has just been a really fun conversation. I know our listeners are going to love it. So, on behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations podcast. For more information on Aphasia Access and or access to our growing library of materials, go to www.apashiaaccess.org. If you have an idea for a future podcast series or topic, email us at email@example.com. Thanks again for your ongoing support of Aphasia Access. Thank you, Rik. That was terrific.