empowEAR Audiology Podcast

Announcer: [00:00:00] Welcome to episode 48 of empowEar Audiology with Dr. Carrie Spangler.

Carrie: [00:00:15] Welcome to the empowEAR  Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3 the number three C Digital Media network dot com under the empowerEAR Podcast tab. Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am really excited today to have a special guest with me and I'm going to read a little about my guest and then I will introduce her. So today I have with me Rebecca Alexander and she is a psychotherapist, an extreme athlete and an activist. She grew up in north Northern California, and she holds two master's degrees from Columbia University. She currently lives in New York City. She is the author of the book Not Fade Away. And she was born with Usher Syndrome Type three. In this book, she shares an incredible story and meditates on what she's lost from the sound of a whisper to seeing a sky full of stars and what she has found with others, a profound sense of gratitude for everything. She has a joy in the simple pleasures of life. So, Rebecca, thank you for being a part of the podcast today.

Rebecca: [00:02:24] Thank you for having me. I'm glad to be here.

Carrie: [00:02:27] Well, I just want to take this opportunity to share the first time I met you. And I don't know, I don't think you really met me, but I saw you at a conference in Massachusetts, and you were the keynote at the Clarke mainstream conference, and you just shared your story. You were so authentic and real, and I was just so grateful to have heard you at that point in time. And I don't know if you remember, but at that conference, there was probably several hundred attendees there, and there was one girl who and her mom, and she raised her hand and she shared with the entire conference that she had recently been diagnosed with Ushers. And I remember you graciously going over to her and you just stood face to face with her and you had this conversation of support and empathy and gave her this big hug. And I thought, wow, I don't think there was a dry eye in the whole audience that day. But at that point I thought, you are truly a person that listens and you make that person, whoever you're with, make them feel like the most important person in the world at the moment. So thank you for who you are, and I'm so excited to have a conversation with you.

Rebecca: [00:03:54] Thank you. Yeah. I mean, that was a really mean. Of course I remember it. I don't think it's something you could forget, but I think sometimes when we're out here and these days with social media and all these different outlets, people lose sight of the fact that we're all human beings, that we have real lives and real stories and real emotions. And so being at that conference, this was before COVID, I believe. So even just being able to be there with someone with a girl and her mom not that long after her diagnosis, I think the emotions were still very raw. And so I really appreciated their standing up and even being willing to share with with me and also the group.

Carrie: [00:04:37] Right. And then I got to reconnect with you just a couple of months ago, and then I officially got to introduce myself to you. And you were a panelist for the American Cochlear Implant Alliance. And that's when I thought, Hey, I'm going to see if she would be willing to be on the podcast today. So thank you for joining.

Rebecca: [00:05:00] Absolutely. I think it was all kind of came in full circle.

Carrie: [00:05:04] It did. It did before COVID and right after COVID, right when we could get back together again.

Rebecca: [00:05:11] Yeah, Yeah.

Carrie: [00:05:13] So I know you have I read your book and I think I laughed, I cried. I could empathize. I had some empathy for parts of the book because I share some of the similar journey as you did. But I thought I would ask you what just prompted you to write this amazing book?

Rebecca: [00:05:35] Yeah. So, you know, it's interesting. There is a definitely a process to it. I mean, some years before I actually wrote it, I was approached by an agent, a literary agent who had seen an article that was written about me for New York magazine, and it was called Going Deaf and Blind in a City of Noise and Lights. And so I think it was a sort of a provocative story about living with the condition that causes progressive deaf blindness and being in a very chaotic, noisy city because I'm in New York City. And so when he first approached me, I thought, what possibly do I have to say that anybody cares to listen to or read about? And what I realized over some time. So I said, I don't really know that that's such a good idea. I think I was 28 when he addressed me and it was about writing a memoir, and I felt I felt like people would think, Really, you're 28 and you think you can write a memoir. But some years later, we there was a story about a spin a thon that we did to raise money for Usher Syndrome research because I was a fitness instructor for many years and he saw the article about me in the New York Times, I think the Style section, and approached me again and said, Now, would you be willing? So I think what was most important about writing this book for me is that in my own process of coming to terms with a condition that causes progressive deaf blindness, I read so many other people's memoirs and people who had very different life experiences than I did, but I always found that there was something in their writing or their experience that resonated with me.

Rebecca: [00:07:19] And to my knowledge, there was nobody that had written a book about living with Usher syndrome in a personal way that wasn't a clinical book. And so it was very cathartic to be able to write this and to sort of speak my truth and to sit down and really put everything into one place. It was definitely a very therapeutic experience, so I am glad that I did it.

Carrie: [00:07:45] Well, I am glad to. And I just wanted to share. When I was reading your book, I made me think of a quote that Brene’ Brown has, and she said, One day you will tell your story of how you overcame what you went through and it will be someone else's survival guide. So when I think when I read your book, I'm like someone else, you know, is going to read that and be able to have that as a survival guide. So all of your courageous remarks and being able to share personally, I think will help others along the way with that. Would you mind sharing a little bit about your childhood events that led up to the diagnosis?

Rebecca: [00:08:27] Yeah. So, you know, everybody has somewhat of a different process of being diagnosed with Usher syndrome. Now, these days, genetic testing can really detect Usher syndrome before there's any physical presentation. But when I was growing up, they didn't yet genetically test for it. And not only that, it was something that for us, we thought that I had some cookie bite of hearing loss because of frequent ear infections. There was just a lot of information and things that were happening that we didn't pick up on. And so it was really kind of like an experiential thing. And by the time I got to the sixth grade, I was having difficulty seeing the blackboard at school and I thought I needed glasses. And my dad took me to the doctor, to an optometrist. His equipment wasn't sophisticated enough to identify what he saw in the back of my eye. So he sent us to an ophthalmologist and we went to several in the Bay Area in California, and they all confirmed that I had retinitis pigmentosa or RP, which is what causes tunnel vision and blindness. And so initially for people who are early in the onset of RP, they experience night blindness and difficulty in certain parts of their vision, whether it's directly below them or in their periphery. And so as a 12 year old, when I was diagnosed with RP, what we thought was just RP at the time, basically I knew that if I went into a movie theater, I had to grab someone's arm.

Rebecca: [00:10:09] I knew that if the dogs were below me that I might trip over them or the dishwasher was open. But at that time I think I heard the word blindness. But for a 12 year old, it's really difficult for you to wrap your head around what that even means. So it wasn't until I was at the University of Michigan, I was a sophomore, and I woke up one morning with really loud ringing tinnitus in my ears and it didn't go away. After a couple of weeks. So I went and was evaluated by an Otolaryngologist and they said, Rebecca, you don't just have RP You have something called Usher syndrome. We've never seen it as it presents itself in you. But because you have both progressive vision and hearing loss, it can't be anything else. So when I was first diagnosed. Usher syndrome. Type three didn't even exist. It hadn't yet even been identified. And it was my own family's bloodwork that we sent to these researchers in Helsinki, Finland. We were the missing link to being able to identify this third type of Usher syndrome. So yeah, I think that a lot of the work and the experiences I had are what have led to a lot more information for families who have been diagnosed with Usher Syndrome Type III. Because when I was growing up, I'm 43 years old, it wasn't that long ago we didn't have any of the information that we do now.

Carrie: [00:11:40] Right. Wow. And then I know you mentioned that you have the hearing loss as well. When did you first notice that you noticed the vision around 12 and then the hearing loss when.

Rebecca: [00:11:55] So, you know, the the the the actual timeline and my memory are a little off. So I'll do my best to try to remember. But my mom is probably still the best one to account for this. But when I was younger, we would watch television and I would always watch out of the side of my left eye. And so we thought it was just kind of a quirk that I would watch TV with my head cocked sideways and nobody really understood why. We just thought it was a funny tic that I had. And what we came to find out over the years is that my left ear was always my stronger ear. And so I created this coping strategy, this compensation, by caulking  my left ear forward so that I would be able to hear the TV better. And it took us some time to figure that out. Again, I had some hearing loss with what an audiologist called a cookie bite of hearing loss when I was younger. And so we didn't know that there was any connection between the two. We thought that that was likely why? So I was given hearing aids. Even when I think I was in middle school or high school, I definitely had a hearing aid that I wore in high school in one ear for my AP history class because my teacher mumbled. But I remember the first time I was given hearing aids, which I never wore. I remember putting them in and hearing the fibers of the rug below me and feeling like I was hearing way too much. Like there are things that I didn't want to hear. And I think that there was also this aspect of feeling very self conscious of not wanting to have to wear hearing aids or to have a hearing loss. So it was this gradual period of time where I think Usher syndrome may be between my parents or something had been maybe mentioned, but never really discussed in full until I went to the otolaryngologist at the University of Michigan and I got that official diagnosis.

Carrie: [00:14:02] And after you got that official diagnosis, when did you feel like you recognized the gravity of what they said to you?

Rebecca: [00:14:15] You know, it's interesting because for so many of us, when you get really what is and remember, I'm a psychotherapist, it is a traumatic diagnosis. And it's not something even at 19 that I could really wrap my head around. So I was told that I was going deaf and blind. What does that even look like? I mean, the only person that I knew who was deaf blind was Helen Keller. And that wasn't my life. That wasn't how I was raised. I was raised in a hearing sighted family. And so it happened to be close to it must have been about 20 maybe, but it happened to be around the time that like the year before I before I turned 21. And so in my mind, I thought after I got this diagnosis, if I could make myself as physically perfect and academically perfect as possible, nobody would know that there was anything wrong with me. So I developed somewhat of a maladaptive coping strategy or developed an eating disorder because here I was given this megabyte of information that I couldn't wrap my head around. It was something that was completely out of my control. Not only do I have this, but we've never seen it as it presents itself in you. So we can't tell you what your progression is going to be like. We can't tell you how this is going to play out. But all I know is that I felt very out of control, whether I was able to recognize it or not. And so I created or came up with some superficial way of feeling like I had some sense of control in my life. And that was by being hyper focused on how much I exercised and how much I ate and how much I studied, the things that I felt were really tangible that I could somehow count or measure in some way.

Carrie: [00:16:02] Wow. And did that have a, I don't know, help you decide what you were going to go into at that point in time? Did you know you wanted to be a psychotherapist or did that evolve?

Rebecca: [00:16:19] Yeah, it definitely evolved when when I was diagnosed with RP. at 12, it was around the same time that my parents had recently separated, separated and divorced, and they sent me to see a therapist. Now I saw the therapist. My brothers didn't and I don't. I think I knew that it was I didn't really know why I was going. I certainly didn't want to talk about anything. And so but I think that that exposure likely was good for me. And so I think there have been all of these this confluence of different experiences that I've had over my life that have really kind of led me in the direction of being a psychotherapist. When you have a condition like this, it requires you to do a lot of self reflection. It requires you to go inward in a lot of ways that you might otherwise not have to, and to try to figure out what your identity is and who you are. So, yeah, there's a lot of different reasons why I became a psychotherapist, but also with a condition like this, it's important for me to be in a quiet room with one or two or just a small group of people to be able to focus and hear and follow the conversation so well. So it seemed like a good decision for me also in terms of my long term career goals.

Carrie: [00:17:42] Yeah. And in your book, you. Talked about there was I want to read directly what you said in the book because it was about kind of your emotions and challenges. And you talk about how I don't feel like the cards I've been dealt are unfair. I don't think life is that complicated. And I know that pity is a trap that will deplete my self-esteem and take away time that I don't have to waste. I choose instead to be grateful, to be happy with what I have today and to be optimistic about tomorrow. It's a conscious choice that one has to take effort to do. I feel like this can be really hard to do just day to day to have a conscious choice to to make the most of what you have. What do you do to help with that choice every day?

Rebecca: [00:18:38] So I think that what happens is that we feel like we've learned that we're supposed to be pursuing happiness and success and fulfillment and we don't make room or allow for ourselves to feel the emotions that come with being human, whatever it is that we're dealing with. When people say things like, I don't know why God did this to me, or they have all these different feelings around, or trying to wrap their head around how they ended up with the diagnosis, whatever, whatever it may be. In my case, it's Usher syndrome. And I just don't think at that complicated. It's a genetic disorder that I have. I think that people have a very unrealistic view on what life is supposed to look like. And it's not their fault. It's what we've learned through our society and culture and maybe our parents. But I think that the way that I'm able to be as optimistic or present as I am is that I allow myself to feel my emotions. I allow myself to cry. I have days where I don't feel that great, where I feel sort of down, where I feel less hopeful. But it's not because something has totally gone wrong and all of a sudden I've lost my way. It's that that's a part of being human. And I think that we have a lot of intolerance for being uncomfortable or feeling sad or even feeling some feel some depression. And we actually have to allow ourselves to sit with it, to develop tolerance for it, and to try to understand why we may be feeling the way that we're feeling instead of trying to figure out how to get ourselves out of it, because it's only in trying to get yourself out of it that you perpetuate that cycle of feeling unfulfilled and unhappy.

Carrie: [00:20:25] Yeah, I think you're right. A lot of times people get uncomfortable and then as humans, we just want we don't want to bother someone else with how we feel. And like you said, it probably stops you from accepting some of the things about yourself too, if you don't feel them.

Rebecca: [00:20:43] Yeah. Yeah.

Carrie: [00:20:46] Well, actually. Oh, go ahead.

Rebecca: [00:20:49] Well, I also think that sometimes when we feel uncomfortable because we live in this time and place now where we have so many outlets to not have to be present, you can go on any number of different platforms of social media and distract yourself. And what we have a tendency to do when we feel uncomfortable is maybe we shop or we look at what everybody else is doing that we're not, or maybe we drink or we use substances or we binge on activity. We do anything we can do not have to sit with ourselves and feel. And that, I think, is something that's difficult to develop when you have all of these very easy distractions. So yeah, that's a little bit more of my 2 cents on that issue.

Carrie: [00:21:34] Yeah, that's a good viewpoint though, and I like what you said about making that conscious choice and it does take a lot of effort every single day to make that choice to. Another thing that you said, and it was about you coming home from cane training and you sat in your book, you put fact disabilities require help fact I hate help and that the disabilities weren't going to change so I was going to have to. What does that mean to you?

Rebecca: [00:22:09] Yeah. So, you know, I think one of the hardest things for anybody, whether you have a disability or not, is asking for help. And it's not just asking for help. It's recognizing that you need help. And I think that we are raised to develop a sense of independence, to feel like we can do it on our own. We don't need anybody that we raise our children to become as independent as possible. And yet the most productive and successful communities are communities that rely on interdependence, meaning that we rely on each other to make sure that people are able to get from one place to the next. So we're able to be aware of the things that are going on in our community, that we help each other to be able to live productive lives. And so I think when you have a disability, you feel like a burden. Oftentimes, many people with disabilities, I think this feeling of not wanting to be a burden is pervasive in their lives, and it's important for people with disabilities to also understand that you have a very active and meaningful role in your family and friends lives too, and you need to recognize that. And the other thing is, is that developing the comfort and ability to ask for help is not a way of saying, I can't do it. It's a way of saying, I want to do this, but I need help in achieving this goal. And I think that what we forget is that when you ask someone for help, you're not saying, Will you do this for me? You're engendering in them this feeling for them that they matter and that they're needed. And as humans, I think there is nothing. We want to know more in this life than that we matter and that we're needed. And it's important to think about what you elicit in someone else when you do ask them to help you.

Carrie: [00:24:12] That's great and I do agree. I think people they want to help others. So if you can get past and this is just my perception, too, sometimes it's hard for me to just say, hey, you know, I have I have a hearing loss. So you kind of have that part that you have to get over on your own end of just even sharing and disclosing that information in order to get the help that you need.

Rebecca: [00:24:40] Well, and the interesting thing is, as a psychotherapist, and I think you can appreciate this, is that I sometimes have people come into my office. We're talking about things that they have a lot of shame around or a lot of really deep seated feelings about. And so they speak more softly or they may mumble. They don't want to hear themselves even say these things out loud. And now during the summer, when the air conditioning is on, it's a whole other ballgame of like, you know, I need you not only to speak up, but. So this is it's hard when someone is in this very vulnerable position as someone with a hearing loss, having to say, I know how difficult this is for you to share and I really appreciate your vulnerability. But in order for me to be able to help you, I also need you to speak up. And and so I often will have to say that to people. And more than anything, I don't want them to have to change their tone because I understand how vulnerable they are being in that moment. But if I'm going to be able to help them and really hear them and support them, I can't do that if I didn't hear what they just said.

Carrie: [00:25:51] Which is a great segway into my next question I wanted to ask was in 2013, you got a message that you might qualify for a cochlear implant. What can you share a little bit about that cochlear implant journey?

Rebecca: [00:26:09] Yeah, so I didn't get a message that I might qualify. I got a message that I did qualify. And the reason why I make that distinction is because, again, there was no real trajectory for me of knowing what my hearing loss would be like. And I was very fortunate to be raised with relatively normal hearing so that I could develop speech. But we didn't know. I never thought that I would ever get to a point where my hearing loss would be significant enough that I would need to get a cochlear implant. I went through so many hearing aids, I can't even begin to remember all the different ones that I had. And I got to a point where I had different hearing aids for different environments. And so I think you know very well what that experience is like. But so when I found out that I was a candidate, I'd been tested before, and a lot of my decision to get tested was mostly to have my friends get off my back of like, see, I'm not a candidate. And when I found out I was it turns out that the threshold had been lowered in terms of what insurance would cover. But my right ear, which was always my non-dominant ear, it could pick up environmental sounds, but it could never really discriminate. It was more decorative. I could wear earrings on my right ear, but I never really used it. I never used it for the phone. Nobody ever sat or walked on my right side. So that ear became a candidate. I think I had, let's say, with a hearing aid. I think I had 28% discrimination.

Rebecca: [00:27:45] And without a hearing aid in the sound booth, I had 26% discrimination. So the hearing aid was doing very little to help me. And so a lot of people find out they're a candidate and they mull over it and they think about it and they worry about it. And I wanted to be proactive. I really was able to recognize that my hearing loss and having a microphone that I would use at times in noisy environments was exhausting. And I don't think that we realize how exhausting it is. Sometimes when you live with a hearing loss and you don't do the things that are necessary to help improve the quality of your life. And so it was a huge fear of mine, and I allowed myself to mourn and cry before I had that surgery because it was never a place I ever imagined I would be. But I will tell you that after having the surgery and a lot of listening therapy later, my my life improved dramatically. And it was the best decision I could have made. And so many people wait, I think because they're waiting for stem cell research to happen, for your hair growth, to be able to regenerate hearing. And that's a long ways away. I'm encouraged by all of the research that's out there. But in the meantime, your life is really being affected by not being able to hear. So for me, it was the best decision I could have made. I think about a year later in a sound booth, I was testing between sentences and quiet or noise and words somewhere between like 92 and 98%.

Carrie: [00:29:26] Right?

Rebecca: [00:29:26] And it was dramatic. It was life changing.

Carrie: [00:29:29] I had to go from 28% to 90% in sentences is a big jump. Yeah. Do you remember what it was like when you first got activated?

Rebecca: [00:29:44] Yeah, I have the videos too, but I do. I mean, I knew that it was going to be weird. I'd been prepared. People had told me that it's a process, a journey, and all the things that people tell you, but until you actually experience it firsthand, you can't possibly imagine what it's going to sound like. And I just remember being turned on and I thought that like the tinnitus in my head was like speaking. When someone was speaking, it sounded like this very high pitch. It was confusing. And so but it did it took time. I had 16 electrodes, you know, I got Advanced Bionics and going through each of those electrodes, at first you get turned on slowly but surely. But it was a very bizarre experience. And my first instinct was like, Oh my God, what the heck have I done? And I think someone told me that maybe I would feel that way. But again, until you actually experience it. But from the day that I was activated to the next day, even when I went for my second mapping, I noticed that there was a shift and even improvement how quickly my brain was adapting to this new way of hearing.

Carrie: [00:31:02] I would say the same thing. Right. When I got activated, I was like, What the heck did I just do? I felt like I was hearing beeps and chirps and whistles, and that was about it. And I thought my my hearing aid was like squealing or something, But it was actually the beeps that were I was hearing with the cochlear implant.

Rebecca: [00:31:23] Right. And that was my experience too, because, you know, we hear all the higher frequencies first. And I remember my best friend was there in the room and the audiologist and their voices sounded exactly the same, like there was no difference between her voice and his voice. And the only way I can describe it and it still doesn't do it justice, is I remember it sounded like this.

Rebecca: [00:31:46] Hi, how are you? What are you going to do today?

Rebecca: [00:31:50] It sounded like a word processor. It sounded very high pitched. It was just it was very overwhelming.

Carrie: [00:31:57] And so then you wore both for a while, your hearing aid and a cochlear implant. And how did you feel? Were you able to integrate both the signals together?

Rebecca: [00:32:09] Yeah, I mean, the hearing aid I wore was a different company then, so Advanced Bionics know they're under Sunnova, which is the same umbrella as Phonak. And I had a Phonak hearing aid, but I'd become so accustomed to using this other hearing aid that I think I was able as much as I possibly could, able to integrate the two. But all of the sudden I started relying on my right ear that I'd never done. I think I was 33 or 34 when I'd been implanted in my first ear on my right side, and everyone had always walked on my left side, sat on my left side. They were used to having to be on my left. And so there was this whole, like migration of everyone having to move to my right side and having to switch that up. And so now it's amazing that I ever even forget or lose sight of the fact that this has not always been the case, that my right ear really was not very usable until I was well into my thirties. And so it's pretty remarkable. Yeah.

Carrie: [00:33:18] That your brain can take that information that hasn't really had much benefit and make sense of it. Yeah. And then you ended up getting a second implant too. How did that happen?

Rebecca: [00:33:30] So my left ear was not a candidate and I tested it every year when I went back for my mapping and my annual mapping and testing, and by 2017, my left ear had become a candidate. And it was something that I knew was going to happen at some point. I tried using my left ear with just a hearing aid and not my cochlear implant. I had friends speak to me and with me reading their lips and also covering their mouths. I really wanted to get a sense of where I thought my hearing was, and it was something I think that there was something that felt more final about getting my second cochlear implant because it was like that last bit of hearing, natural hearing that I had. But again, once I got my second cochlear implant, after three months sentences and quiet, I was at 100%. I mean, I didn't wait to get my ear implanted. I know that now the implants or MRI compatible, my implants are not. But if I'd waited for an MRI compatible cochlear implant, I would have not missed out on some very crucial years of my life, both personally and professionally. So I think that it was the best decision I could have made and to have more of that stereo surround sound. And remember, when you're losing your vision, you do need everything else you can have to help you gather information from your environment. So I didn't write.

Carrie: [00:34:59] Well, I guess it's a blessing. And the fact that there's so much research and advancements in hearing technology in order to give more hearing that for individuals that need it. So and then assistive technology and everything else to.

Rebecca: [00:35:19] Yep. Yeah.

Carrie: [00:35:21] And you also mentioned in your book, too, that as a psychotherapist, you have seen some individuals who are deaf and hard of hearing. Do you think those individuals seek you out because of your own personal journey too or how how did they find you?

Rebecca: [00:35:40] Yes, I do think that for any of us, one of the things that's most difficult for people living with Usher syndrome or living with a hearing loss or whatever it is that we face, it's the wanting to go and see a therapist where you don't have to explain all of the nuances of living with hearing loss or vision loss or cancer, whatever your circumstances might be, to be able to have a therapist who either specializes in whatever it is that you're dealing with or who has firsthand personal experience, can be relieving. It can be very meaningful because there are so many things that you don't have to explain. They get it in a way that somebody else wouldn't. And I think that my own frustration when you're a therapist, it means that you yourself ethically have to be in therapy. I've been in therapy for a gazillion years. It's been one of the best things I could have done and have done for myself because it allows me to practice self care and be self reflective and hold myself accountable instead of projecting my feelings onto everybody else. But it's also been frustrating because there have been many times where I feel like I'm paying someone to listen to me, educate them about living with hearing loss or living with vision loss. And so when you can bypass that step by seeing someone who has that specialty, that expertise or the personal experience, there's nothing like it. It almost feels like a sigh of relief because you can get to the real heart of the issues that you're dealing with and not have to deal with all of the psychoeducation around living with a hearing loss or vision loss.

Carrie: [00:37:28] Yeah. And for individuals who don't have hearing or vision loss, it's really hard to put yourself in those shoes.

Rebecca: [00:37:36] Yeah, Yeah. But there are also people who are fully sighted and fully hearing who seek me out because they see that I'm contending with something or living with something that they feel is something they couldn't ever imagine living with, and that maybe there's more information or insight or self awareness that I have just from dealing with something like this that they could learn from. So it's interesting.

Carrie: [00:38:04] That it is. And they're like a story about a significant challenge that you've had. And how did you overcome that? You have so much grit and determination and your book and what you share, but there's something that really sticks out in your mind.

Rebecca: [00:38:23] So it's interesting because we talk so much about overcoming our fears or overcoming certain obstacles. And I really try to bring it back to encouraging people to live with obstacles, to live with adversity instead of always trying to overcome it. There are definitely goals we need to set to overcome our fears, but the fears may never go away. It may the first six or seven, eight times I use my cane, I cried. And again, as I've said, living in New York City, using a blind person's cane and walking down the street doesn't draw that much attention. It doesn't look that unusual, which is fortunate. But there's the practice of needing to be uncomfortable, of needing to be afraid and still do whatever it is that you feel afraid of on even a daily basis or consistently so that it's not just that you're overcoming that fear, you're able to live with it. Because I think that we all feel like we have to set these goals to overcome our challenges and be able to move on to the next, bigger and better thing. And yet there are a lot of things that we may not be able to overcome that we may have to simply live with. So I think for me, the biggest obstacle that I still face is dealing with the inaccessibility of so many different types of technology and programs of having to constantly educate people about the importance of making information accessible and that it's not a privilege. It's a right for people who have hearing loss or vision loss to be able to have access to the same information that other people who are not hearing impaired or hard of hearing or low vision or blind that they don't even have to think about. So I'd say that that is something stands out to me. Climbing a mountain, swimming from Alcatraz to shore. Those are things that I can totally do, and I have the spirit to really challenge myself. But dealing with these things on a day to day basis is the most exhausting. That's what I think is my biggest obstacle that I challenge myself with every day.

Carrie: [00:40:46] Yeah, I love your comment about living with the adversity and instead of overcoming that and yeah, you also have some very humorous stories too. Do you feel like humor plays a positive role in living with adversity?

Rebecca: [00:41:05] So humor, I think, is at the core of our existence. When you live through so many different either traumatic events or heavy circumstances, it is so important for us to have humility and also to have humor because so many of the things that we face in our lives we don't have control over, and we try so hard to have some semblance of control of certainty. And yet life is very unpredictable and very uncertain no matter how hard we try. And if I were to just allow myself to fall into this hole of going going deaf and blind and how heavy this is, there's tremendous humor that comes with it. There's tremendous humor that comes with dealing with a condition that is so uncomfortable and and yet it's also hysterical. And I've shared many stories, but one of which that I can think of off the top of my head is when I was presenting for the Alexander Graham Bell Foundation, they were giving an award to someone and I was presenting the award when they brought me backstage and it was really loud and really dark and they said, You hold here, we'll come get you when it's your time to come out and we'll we'll guide you onto the stage.

Rebecca: [00:42:31] So it's completely dark and I feel that there's someone next to me. And so I didn't want to be rude. I wanted to engage in conversation I couldn't really hear because of how noisy it was. But I think I was just making small talk. Someone came to pick me up and said, okay, it's time to go on stage. And I put my hand on that person's arm and said, It was nice chatting with you. But when I put my hand on that person's arm, I realized that I had been speaking to a statue the entire time. And, you know, if I were to allow that to really bring me down, I can't believe I was talking to the statue like, it's hilarious, right? I was so caught up in the fact that I didn't want to be rude or offensive to someone that I just started talking to who I what I thought was a person. But it was nobody. It was just a statue. And so there's so many things that happen that are. Or humorous and you have to really allow yourself to laugh.

Carrie: [00:43:27] That is a good one. Talking to the statue, they probably said all nice things back to you.

Rebecca: [00:43:32] Right. It was a riveting conversation.

Carrie: [00:43:36] I love it. Yes. I find humor to be something that's important for me, too, because I do a lot of things very similar to that, where I mishear things or, you know, the things and I say something and I and I'm like, I don't think that was the right thing to say back.

Rebecca: [00:43:56] Right, Right.

Carrie: [00:43:58] But you have to laugh or it will eat you up, right?

Rebecca: [00:44:03] Yeah, definitely.

Carrie: [00:44:06] And the other there's one other kind of question that I thought I would ask would be. I think as humans, we naturally want to be in community with other people and it's just kind of part of who we are. And in your book, you share a lot about different significant people in your life, your family, your friends, coworkers. Have you. How has that been with you? How have people been able to influence and support you?

Rebecca: [00:44:38] It's so important for us to have a community, even if it's a small group of people that you rely on to just laugh with or to cry with or to feel like you can really speak openly with. And so for me, I really, really treasure my friendships, my relationships, because these are the people who know me better than anyone. I have people in my life who have known me way before my diagnosis, and I have people who I've only more recently met who have only known me with my disability. And so it runs the gamut in terms of the types of relationships that I've curated. But I think part of what's so important about us having community and having people in our lives is that it helps us maintain perspective. And it's also important for us to remember that what we go through may be very acute and specific to our lives, but everybody has something. And there are plenty of fully able bodied, fully sighted, fully hearing people that I work with in my practice. And you could not pay me $1,000,000 to trade places with them for various reasons. Maybe it's because they don't have a strong support system. But you need to be able to foster that yourself, to develop a support system for yourself and to support other people as well. The people who are in your support system that again, that interdependence is so, so crucial to our existence because. We all want to know that we're not alone. And even if somebody can't relate to what you're going through, they can be there with you. And that, I think, is far more important and it makes it more enjoyable and more interesting to have people to be there along the way with you.

Carrie: [00:46:29] Yeah, definitely. Having that village around you is important.

Rebecca: [00:46:34] Huge. Yeah.

Carrie: [00:46:36] Many of the listeners for this podcast are hearing care professionals, their parents who have children, who may be deaf or hard of hearing, or they're adults who are deaf and hard of hearing, and many may be dealing with a new diagnosis or might not have come to acceptance or I don't want to say acceptance, but you know what I mean. Of their hearing challenges. Do you have any takeaways that you can share with the audience about that kind of coming to acceptance or dealing with whatever adversity you have?

Rebecca: [00:47:14] Yeah. you Know, I think that particularly for parents and caregivers of kids or loved ones who have a hearing loss. Oftentimes we do take on this caregiver role, and it's so important for caregivers to recognize that they have needs, too, and that they need to take care of themselves. People who are caregivers by nature feel a sense of fulfillment by helping other people. But when you do that and you don't take time for yourself or recognize your own needs, we have a tendency to develop resentment towards the people we help, and the resentment that we feel is actually not towards the people we are helping or loved ones is actually towards ourselves for not being able to have either the strength or the wherewithal to say, I need to do something for myself or I need to take care of myself. It sort of becomes self-fulfilling. So I think that for parents and caregivers or loved ones, you need to make sure that you're really addressing your needs to that someone, the person with the hearing loss or whatever the situation is, becomes the identified patient. And that is where codependency lies. And so you really need to take care of yourself.

Rebecca: [00:48:28] For clinicians, I think sometimes you work day in and day out on the same issues of dealing with hearing loss, of doing the hearing tests, of fitting people with hearing aids, and having to deal with all of the growing pains of adapting to your new hearing device and everything. And we lose some of our humanity, understandably, because either were exposed to it all the time and it's something that becomes second nature to us. But you have to remember that when a person comes into your office, being able to hear is very much intrinsically linked with our competence and our ability to feel whole. And so we have to remember that people come into you and they actually are very vulnerable. They may be a difficult patient, they may they may cry, they may have any number of different responses to hearing test or being fine tuned, and you have to try to be present for them and understand that this is a very emotional experience. It's not just a clinical experience of of being tuned up. So I think the humanity and maintaining your ability to have compassion is difficult, but so important.

Carrie: [00:49:46] And there's a great take aways for families and also clinicians who are dealing with or, you know, experiencing this professionally on a daily basis, too. Is there anything, Rebecca, that I didn't ask you that you wanted to share today?

Rebecca: [00:50:03] Well, I would love to hear from your audience. I mean, they can certainly reach out to me on Instagram or Facebook or TikTok or Twitter at reb_alexander I'm sure you will include that.

Carrie: [00:50:19] I will. I will put that in the show notes for you and for us. And they can get connected with you that way, too.

Rebecca: [00:50:26] Yeah, because I think that there's a lot of questions that may come up for people and I'm happy to answer them. But I think that what's most important for people to know is that they're not alone. You know, we all go through this and it can feel very isolating and lonely, particularly when you're dealing with a hearing loss. And it's so important for people to know that they're not alone, that as difficult as it may be, there are other people who really understand and go through what you go through. And it's not to diminish your experience, but it's to let you know that there are a lot of people out there that you can relate to and develop relationships with who will really be able to see you and understand you. And so I think that's important.

Carrie: [00:51:07] I do, too. And your profession as a psychotherapist and you talked about getting help and when needed to is probably another great point for people.

Rebecca: [00:51:18] Yeah, I think that there's a lot of stigma around seeing a therapist or even potentially taking a patient if you need to. And I think it's important for us to try to break down some of that stigma because the stigma that people feel is actually only inhibiting them. And it's it's important, I think, for people to really recognize not what everybody else thinks or what they think other people will think, but what they need, what is in their own best interest in order to take best care of themselves.

Carrie: [00:51:53] Yeah. Well, Rebecca, I want to thank you so much for being open and willing to be a storyteller of your own life, because I am grateful that I had the opportunity to meet you and connect with you a couple of different times, and that we have a common connection of being deaf and actually going on the cochlear implant journey later on in life as well. But you are definitely an inspiration to me and I know you will be an inspiration to all of our listeners as well. I will link up your social media site as well as the book Not Fade Away, because I feel that you share so much in that book that listeners would really appreciate reading it. So thank you again for being a part of today's podcast.

Rebecca: [00:52:39] Thank you for inviting me. I'm glad to be a part of it.

Carrie: [00:52:42] All right, listeners know if you enjoyed the podcast. Please share this with others. I hope that you engage with me on the Facebook page. Transcripts for this episode are also available on the 3C Digital Media Network website, and thanks for spending time listening today.

Announcer: [00:53:00] This has been a production of the 3C Digital Media Network.

Announcer: [00:00:00] Welcome to episode 47 of Empower Audiology with Dr. Carrie Spangler.

Carrie: [00:00:16] Hello, listeners. This podcast is a little different from my other podcasts as it is a remix of the Facebook Live event with Jodi Cutler. This conversation was too good to not put out to all of you. For those of you who do not know Jodi, Jodi is amazing. She is a mother, public speaker, writer and now movie producer. She has an adult son who has a cochlear implant and has been able to use her own personal parenting journey to help many others. In this podcast episode, you are going to hear about the exciting news of Rally  Caps book turned to movie. Jodi takes us behind the scenes as Rally Caps was selected for the 31st Heartland International Film Festival in Indiana from October 10th through the 16th, 2022. For me, as an individual who has a cochlear implant and wears a hearing aid, just seeing the movie poster with Lucas, one of the main characters wearing a cochlear implant gives me a sense of excitement and belonging. Representation does matter. Take a listen to this amazing conversation with Jodi Cutler. I think we are going live. Welcome, Jodi Cutler. Thank you for joining me this morning. At least morning for me. And I have my morning coffee with the EmpowEAR Audiology Facebook Live group and this is part of 3C Digital Media Network. I am so excited to have you this morning and afternoon for you.

Jodi: [00:02:05] I'm so excited to see you because I love you and I wanted to talk to you.

Carrie: [00:02:10] I know it's been a while since you were on your baseball spree going across the country to different baseball field, but now you have some even more exciting news, don't you?

Jodi: [00:02:24] I do. I have a lot of exciting news. When I was.

Carrie: [00:02:28] When I was excited to find out more. What? So what? What do you have to share with me this morning?

Jodi: [00:02:37] Okay. First of all, for people who haven't been following the situation, I met Carrie during. Well, first I met Carrie during a zoom for the American Cochlear Implant Alliance. Tuesday talk. And I researched Carrie because she was the person who was a moderator and I, like, fell in love with her and everything that she does. So I stalked I stalker her and. And when we had to go to do the Cleveland Guardians Rally Caps Hearing Loss Awareness Day event, I reached out to her and we were able to collaborate and work together. And she's like, amazing. So I have real love for Carrie, which is why I'm excited to talk to you about Rally Caps, because back when we were in post-production and, you know, we had no idea how we were, how it was going to move forward and how it was going to play out. We were accepted to the Heartland International Film Festival in Indianapolis, Indiana, and it's like, go time, big time. So.

Carrie: [00:03:44] Well, so yeah, so that is so exciting. And just to kind of back up a little bit, Rally Caps is kind of a fusion from a book that you and your dad wrote. Correct?

Jodi: [00:03:55] Yes. My my dad and I worked together to write this book. I have been living in Tuscany for the past 25 years. So I was writing parts of the book in Tuscany and he was editing, modifying, adding parts of the book in West Palm Beach. And there was an exchange. And then finally we were able to finish the book and complete it. My dad had a story to tell about anxiety and getting hit by a baseball bat when he was young. And I had a story to tell because I wanted my son to see himself represented in literature as a child with a cochlear implant who uses listening and spoken language. Because until then I had not found that representation for my son. And I'm obsessed with reading.

Carrie: [00:04:46] Well, and I think it's so important for individuals to be able to see themselves and be represented in literature. And now you have a movie to share as well. So how did you decide that this book needed to become a movie?

Jodi: [00:05:04] My dad has a very determined personality, and from the moment the book was published, he continuously said The book needs to become a movie, and he made it his life ambition and goal to make Rally Caps the book into Rally Caps, the movie. He found Lee Cipolla, who is our multitalented, unbelievable work ethic, phenomenal director who took our book and transformed it into a screenplay, that is. Okay. It's better than the book. I know that you're not supposed to say that, but I love what he did with the screenplay. He's so talented. And. And I was so grateful because he consistently collaborated with my dad and me to. To make sure that we were on board with everything that was being done. I was totally against the idea of making it a movie, because when my dad came to me and said Lee was ready to go, I was like, Dad, it's March. I'm in Italy 2020. We're having a serious lockdown. Covid is happening. Nobody's making a movie right now. And he said, Yeah, we're going to make the movie. And I'm like, okay, Dad. And then and then, you know, your past and time went on and we kept making the screenplay even better and stronger. And then we had I mean, because I was involved, even though I was a little hesitant, my dad will never let me forget that fact.

Jodi: [00:06:35] And that's okay because he's right. I can admit what I'm wrong. And and so we had a table read, and at the table read I met Carson Minniear, who's our superstar. He's so cute and just asked amazing questions and was really talented. I started to see the other actors that were going to be involved in the movie. James Lowe, who plays Coach Ball game. I mean, he plays Coach Ballgame. He is Coach Ballgame. He's phenomenal. Like, I mean, you just melt when you see him and then that's how it started. So we were a small indie film, and then Amy Williams, our producer, was like Lee. I think it's really important to have Judd Hirsch and Amy Smart in this movie because I really believe that they would be exceptional. And so Lee was like, Yeah, that sounds really good. So Amy Williams made that happen, and suddenly our small indie film became. The bigger and more important and the fact that Judd Hirsch and Amy Smart are in the movie, and aside from the fact that they're exceptional professionals and unbelievable actors, their names are going to bring even more awareness to the representation that we are trying to make more visible.

Carrie: [00:08:03] Mm hmm. And you have a couple of characters in the movie who themselves live their life as an individual with cochlear implants or who is deaf and hard of hearing. Can you share a little bit more about those characters?

Jodi: [00:08:19] I will say this. When I found out about my son's profound hearing loss bilaterally sensorineural in Italy, in Italian, and I didn't speak the language. I was a little lost. I mean, I was determined. But but to help him learn to listen and speak. But I was a little lost because I couldn't talk to anybody, really. And in Italy, I didn't have a lot of resources. So the first time I went back to the United States, I went to a bookshop and I was looking through books on hearing loss. And I found Choices in Deafness and in choices and choices in deafness. There was the story of Curtis Pride, and when I read his story, I sat down next to the bookshelf and started crying. So for me, Curtis Pride has always had an important place in my personal journey. At another point in time, my father, who lives in West Palm Beach, near where Curtis lives, heard about a wiffle ball tournament that Curtis was having. And he went to participate because, you know, my mom and my dad were on the other side of the world. And it's you feel helpless to do anything because, you know, so he wanted to to feel like he could contribute and do something.

Jodi: [00:09:39] He went to umpire at this tournament and they became friends. So years later, when we were starting to cast the characters for the my son, who was going to be my my son's character, the child with a cochlear implant. My dad reached out to Curtis, and Curtis has two children, Colton Pride and Noel Pride. Colton, who plays Lucas, has single sided deafness and Noelle has bilateral sensorineural profound hearing loss like my son. So I had always wanted to to cast a deaf character, to play the role of Lucas and. Both me and my dad and everyone was so excited because we were able to have another character with hearing loss with cochlear implants in the film. So we have a boy and a girl and. Additionally, Curtis Pride himself has a cameo and delivers an important message. And for those of you who see the movie, wait till the credits at the end. Don't be getting up and leaving because there's another part that you're going to want to see when the credits roll. And I just the fact that it went full circle with Curtis Pride and and how I live that moment personally was just another Rally Cap's miracle that occurred.

Carrie: [00:11:02] Yeah, that is amazing. That, like, you had that incident in the bookstore where you read about him and then come come full circle and both of his kids that in the Rally Caps movie and they're just so good They're so good.

Jodi: [00:11:19] I know such beautiful people. I mean, they're so sensitive and intelligent and they're just and fun. They're a lot of fun. We had a lot of fun making Rally Caps at camps Gattaca in New York. I'm not going to lie. Like.

Carrie: [00:11:33] Amazing And yeah, so I know. So you got the movie produced and how did Ralley Caps get picked for the The Heartland Movie Festival?

Jodi: [00:11:49] I guess I I'm like Jodie, who raised a child with hearing loss and was a teacher and has helped people in Italy who have their own journeys in deafness. I have had no experience in my entire life with filmmaking, so becoming a producer has been a step by step learning experience. One of our producers, William Garcia, who was working on budget and a lot of the elements, he'd be like shooting acronyms and stuff. And I'd be like, Okay, I need you to explain that. I didn't understand anything. And then Catherine Borda, who is like taking care of all of the details and special effects and color and sound and score that I have no clue about. It's been a learning process. So in terms of the festival, all I know is that we submitted the film and they said, You've been accepted to the official selection. And I'm like, Woo hoo! And Lee and Kathy are like, Oh my God, that's amazing. But they had like. It's 25 days to finish. Finish the movie because we were in post-production.

Carrie: [00:12:58] That is awesome. 

Carrie: [00:13:26] So if people want to watch this movie, how are they able to stream it or see it?

Jodi: [00:13:35] Well, we are premiering in Indianapolis on October 8th, and we are premiering in a theater called the Toby Newfields at 5:15 p.m.. If you live near Indianapolis, we're going to have a really good time at our premiere. Like everybody's coming except for Amy and Judd. They are not coming to the premiere, but all the kids are going to be there. We are planning a lot. We're trying to get involved with all of the associations in Indianapolis who I've learned that most of the people responsible within the associations are parents themselves. So there's this huge cohesive unit in Indianapolis that has like been unbelievable for me to work with them. So the Toby you can order ticket for the the premiere the next day. The ninth is another screening in person and that is at the Glendale Glendale 12 at 7 p.m.. You can order both of those tickets through Heartland International Film Festival. And we also have the opportunity to watch the movie virtually. There is a link to be able to reserve, a link to be able to watch it virtually. Those are limited. There is only a certain amount of virtual links. So anybody watching if you want to see the movie. Right now. As far as I know, this is the only chance.

Jodi: [00:15:06] Obviously, our hope is that a streamer distributor will pick the movie up after this festival. But for now, we're taking it step by step. Everyone has been so incredibly supportive. I just if I can, I'd love to give a shout out to Phonak and Advanced Bionics who have partnered with us. Their main goal in partnering with this movie has been to make as many people mainstream aware of. Cochlear implants, what they do for our kids, hearing aids, how hearing technology and devices like the Roger ON. Allow for more accessibility and more inclusion in mainstream lifestyle. And through the movie, we are trying to make sure that all hearing technology is very visible because what we all want to do is smash negative stigma regarding hearing loss. We're tired of our kids having to explain themselves constantly. We want people to look at a hearing aid and a cochlear implant and be like, Oh, they're just like Lucas. Or Oh, they're just like Nicki, So they don't need to go into this explanation about their hearing loss before people are able to know who they are as individuals. And this is what our real goal is for Rally Caps.

Carrie: [00:16:26] And I love the poster too. With you can see Lucas and his cochlear implant and a vibrant blue color. And that is just so amazing to have that representation just even visually. But I can't wait to see the movie as well to have that representation. Thank you. Is there anything else I should ask you or that you want to talk about with the movie as we're live this morning?

Jodi: [00:16:52] I just. I could talk for hours and hours. It's like I just wanted to I kind of want to add something that that I had this conversation a couple of days ago because I'm moving to the United States. A lot of people who are from my forum are coming to visit me to say goodbye, who I've met virtually. And because of COVID, we haven't been able to have our usual Congresses. So everybody can meet in person and people are coming to visit One of the people who came to visit is a woman who had profound was born with profound hearing loss, wore hearing aids for her entire life until she was 50. When she was 50, she decided to get a cochlear implant. And what was really interesting is that she was because a lot of you with the forum, you help them and then they pay it forward and help other people who are nervous about cochlear implants because we're always scared of the unknown. So the more known we make it, the easier it is to make a decision. She was like, Jodi, I have people come to me who are about to get married and they're like, Should I have a cochlear implant before I get married or after I get married? And she goes, Jodi The cochlear implant changed my life. It helped the real me come out of my shell because I, I didn't feel isolated. I felt more secure that I could hear things around me and. I became a new Maria Luisa. Like now I drive places. I go on trips alone. I, I started working. So she goes, make sure you get that cochlear implant before you get married, because the dynamic of your relationship could change when you go from someone who is a little bit more dependent to a person who becomes totally independent and starts making decisions on her own. And I just I thought that that that blew me away. I just thought that I wanted to share that because it happened a couple of days ago and it's still going around in my head.

Carrie: [00:19:00] But. But because of all of your sharing and willingness to share about your own journey and then the Rally Caps and now the movie, it really opens up opportunities for people to have a conversation and like you said, smash stigma and make it something that's mainstream and out there and that these kids are amazing kids no matter what. They just have amazing technology on their heads that helps them listen and talk. And that is kind of, I think, the message that is really positive for Rally. Caps.

Jodi: [00:19:36] And another thing that I've loved since we started sharing is that parents are contacting me and they're asking me how they can have virtual watch parties so that they can get as many people involved as possible. While we have this window of opportunity to see the movie, like one of our actors’ principals where he goes to school, wants to have a huge watch party for the whole school. So, I mean, literally people are taking advantage of this opportunity to try to spread as much awareness as possible in this moment that we have. And my hope is that people love the movie so that it just explodes from here because there's there are so many ways that we can reach an incredible amount of people with this information to spread awareness.

Carrie: [00:20:26] And so I know we have this window of opportunity to watch it right now, But what is your hope after the film festival is over? 

Jodi: [00:20:38]When the film Festival is over, I'm going to my new place in West Palm Beach, getting my kids situated and set up. And my hope is that within that period of 15 days, everything explodes and we have an opportunity to to discuss with a distributor, talk to a streamer, to get it to as many people as possible, as quickly as possible and as internationally as possible. Because as you well know, we are a global community. In the past I know the deaf community has been strong, has been visible in the media, has had an incredible voice. What I have realized, and I can attest to is that our community, which is just another shade of hearing loss and deaf, including the listening and spoken language aspects or even bilingual communication. And, you know, there are parents who make choices in deafness to to use sign language and and and to use spoken language. But we have a powerful community that is dying to be represented, and that is not just in the United States, that is internationally. And I'm looking forward to the entire experience.

Carrie: [00:21:57] Well, Jodi, I just want to say you said you loved me at the beginning. And I just want to say that I love you just as much as I love you. I just love everything you do. And you have such an open heart and willing to share. And you are just. And by like, that's all I can say is you are on fire and you are making such a difference.

Jodi: [00:22:20] I need to say one thing to the people who watch you like Carrie is amazing. And there were moments during the Rally, during the Rally Caps, hearing Loss Awareness Day events. And because we did everything in such a short amount of time and I don't know, she must have sensed that I was losing my mind. She would send me these like these affirmations, daily affirmations that were they were so, so kind. And I just there have been so many people who have been present and I so appreciated you just being kind, like, for no reason. And that's what's been happening with Rally Caps. We have been experiencing kindness, generosity, love, miracles. And I just hope that that continues.

Carrie: [00:23:06] And I'm sure it will. So thanks again for joining me and live this morning. I'm hoping that we didn't have too many glitches with the Internet connection. But after this, we will share this with others who weren't able to join us live this morning and put links to the Rally Caps movie in the comments so that if people want to either attend in person or virtually they have the information that they need to do that.

Jodi: [00:23:38] So thank you again. Thank you so much. I love you. Have a great day.

Announcer: [00:23:43] This has been a production of the three C Digital Media Network.

Announcer: [00:00:00] Welcome to episode 46 of Empower Audiology with Dr. Carrie Spangler.

Carrie: [00:00:16] Welcome to the EmpowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living, with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe or invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the EmpowEAR Audiology Facebook Group. Transcripts for each episode can be found at www3 the number three C Digital Media Network dot com under the EmpowEAR Audiology Podcast tab. Now let's get started with today's episode.

Announcer: [00:01:22] Hi. I wanted to take a moment to let you guys know about Carrie’'s new webinar. She has created a wonderful new webinar in collaboration with 3C Digital Media Network titled Back to School Optimizing the Learning Environment for Students Who Are Deaf or Hard of Hearing. It is an amazingly informative webinar with many helpful resources. You can go to 3C Digital Media Network dot com courses to access it, and from now until September 16th, we have a back to school promotion for 30% off all webinars. So I encourage you to check it out and take advantage of this offer before it expires. Now back to the episode.

Carrie: [00:02:00] Welcome to the empowEAR Audiology podcast. Thanks for joining us today and I have a special guest with me today and I'm going to give you a little introduction. But my guest, I have Dr. Uma Soman with me today, and she is a teacher of the deaf or hard of hearing and a listening and spoken language specialist, auditory verbal educator. Over the last 20 years, Dr. Soman has worked directly with children, their families and their educational teams in a variety of settings. She has also worked with graduate students and mentored professionals pursuing their listening and spoken language specialist certification. Currently, she serves in two roles the first as a co-founder and director of professional development at Listening Together, a nonprofit organization that advances the education and rehabilitation of children who are deaf and hard of hearing through parent empowerment, professional development and public awareness around the world. The second, as an assistant professor in the Communication Disorders and Deaf Education Department at Fontbonne University in St Louis and both of these roles, Dr. Selman works to prepare teachers, speech language pathologists and audiologists to work with with children who are deaf and hard of hearing and their families in a variety of settings. Dr. Soman has served on several boards, including the Option Schools Board and the AG Bell Academy, for listening and spoken language. So welcome, Dr. Soman.

Uma: [00:03:40] Thank you, Carrie, for that lovely introduction. And please just call me Uma.

Carrie: [00:03:45] I will. But it's so great to have you here. And I was so excited when I had the opportunity to actually meet you in person in May in Washington, D.C., at the cochlear implant conference.

Uma: [00:04:00] Yes. I mean, I have known of you and maybe we've interacted, but we had never met in person. So that was fantastic.

Carrie: [00:04:08] It was. And then I said, How would you like to join me on the empowEAR Audiology podcast? And you graciously said, Yes. So thank you for joining today.

Uma: [00:04:19] Thank you for inviting me.

Carrie: [00:04:21] I always like to ask my guest, how did you get to the point where you're at as far as a teacher of the deaf and just kind of was there something that spurred you into the field?

Uma: [00:04:36] So, you know, as I was preparing the questions. What I wanted to share today on your podcast, the word that kept coming up over and over was this. theme of Opportunity. So I got into this field. Initially by just dumb luck happenstance. My younger sister was diagnosed with bilateral, profound hearing loss many, many years ago. We were living in the Middle East at the time we moved to India. Given the services or lack of services, I should say for a very young child, my mother became a teacher of the deaf. My sister started receiving, listening and spoken language intervention from somebody who was trained by somebody who was trained by somebody by Dan Ling. Right. So this just the opportunity. So I've been going to listening and spoken language interventions since I was eight years old. There happened to be people on my mother's side of the family who are deep in education and teaching. So that path sort of just opened up in front of me and I happen to be decent at it. And I was again opportunity. I had the opportunity to train at one of the best possible programs in India in the field of deaf education. Over there I met a mentor who directed me to the Clarke School for the Deaf Program in Northampton, Massachusetts, for my master's. I got the opportunity to intern at Clarke Jacksonville. I got the opportunity to get a job there. Then through, like a recommendation, an opportunity to work at Vanderbilt, an opportunity to pursue a Ph.D. as a National Leadership Consortium and Sensory Disabilities Fellow. The opportunities have been endless, leading all the way up to what I'm doing today at Listening Together, as well as for fun on university.

Carrie: [00:06:51] Wow. I love how your personal story and experiences really created a lot of opportunities for you, and kuddos to you for taking so many opportunities too, because sometimes people are afraid of change and to take opportunities. And obviously that is not something you're scared of.

Uma: [00:07:14] No. And it takes intentional choosing a yes to something is a no to something else, and it takes hard work. The opportunity is just the beginning. What you do with it is what matters.

Carrie: [00:07:27] Mm hmm. Well, I'm glad you are good at saying your best Yes. And your best No’s along the way, which I have a feeling has a lot to do with your nonprofit organization that you and a colleague had started called Listening Together. I would love to hear more about your mission for Listening Together and what you guys do.

Speaker4: [00:07:54] Sure. So back in late 2016, just as I was finishing my PhD at Vanderbilt University, Ahladhini Rao Dugar and I started working together on this passion project that would eventually evolve into listening together. And we both grew up in India with family members who were deaf or hard of hearing. And we were quite familiar with the disparities in outcomes for children who are deaf and hard of hearing in India and the Indian subcontinent in general. Children and families who have resources and to some extent luck in finding the right professionals do well. And those who either don't have the resources or are aren't in a geographic location that has professionals or are working with professionals who are still running off of old methods. Outdated training have different outcomes. And at that point in our careers, both Ahladhini and I were at a point where we were ready to figure out what was our opportunity to give back, to share what we had learned so we could contribute to the process of making the difference. In no way were we thinking, Oh, we're going to fix this, or we've learned things in the quote unquote West that we are going to bring to India. It was always a what can we do with our knowledge to support what is happening that is relevant, realistic for the populations that we will be in contact with, for the communities of parents and professionals. So this sort of grew from working with one family. And by the middle, early 2018, I want to say Uma Medadidi, another parent, not another parent, a parent of a bilateral implant user, joined us and a team of the three of us formed the Listening Together nonprofit organization. Our mission has always been to support children, families and the professionals who work with them. And eventually we came to this statement of we want to transform lives of children who are deaf and hard of hearing around the world through parent empowerment, professional development and public awareness. We truly envision a world where financial restrictions and geographic constraints don't determine a child's outcomes, and every activity we do is towards this work of transformation.

Carrie: [00:10:41] Now, what a great mission. And the fact that you have lived in India and you've been there, I'm sure gives you so much insight into what you're currently doing, even though you want to make an impact across the world. But it sounds like it started because of everything that you've already experienced personally as a family and then with others who are India, too.

Uma: [00:11:06] Absolutely. And I would say that we don't claim to know what the ground reality is, but at least we feel we know the questions we need to ask because we're not on the ground every day. So partnering with people on the ground, understanding their day to day facilitators and challenges and successes and barriers. And we speak the language. We have a sense of the culture. And that, I would say, is a plus.

Carrie: [00:11:39] For sure. You mentioned that you have some different components of the program as well. So what kind of or types of programs do you offer through listening together?

Uma: [00:11:52] So our primary audience is families of children who are deaf and hard of hearing. As well as the variety of professionals who support these families. Again, notice that I'm not saying we work with children because that's not the focus. We work with families. We empower families and caregivers to support the development of their children, to engage in interprofessional collaboration. So that's one aspect, the parent empowerment piece. We've done it sometimes through individual coaching, but almost always the model has when group parent coaching, developing materials or resources or talks everything virtually. We don't have a brick and mortar anything in the world and connecting families with each other, connecting them with the supports within their communities is part of the Parent Empowerment Program. I mean, it's easy to talk the talk. The parents are the experts on the child and the parents and the leaders of this team. But what does that mean? How do we get parents to be able to do that? Is the focus of the Parent Empowerment Program. The professional development piece, and we actually call it the listening and spoken language professional enrichment program, because almost everyone we work with has a background or degree in a field related to working with children who are deaf and hard of hearing, either as an SLP or audiology or as a teacher. And the goal there, again, is to take the skills they currently have and enrich their knowledge and skills so that not only are they learning the latest evidence based practices, but learning how to implement them. Keeping the family at the center of all of this, always because the models have been the models in India in particular are a little bit different, influenced by culture, social norms of how a parent and professional interacts with the power dynamic is, and so on and so forth.

Uma: [00:14:14] So professional development is about addressing the building capacity within the knowledge, the skills, as well as the attitudes and the dispositions. We really want to see parents and professionals working in collaboration to best support the child. So we have these two sort of separate tracks and then we have the public awareness piece. And that to me is sort of our everybody together kind of track. And under that we released a children's book. We have our free webinars that are open to parents and professionals. To the best of my knowledge, when we first started these webinars, it was one of the maybe the only but definitely one of few platforms where information, the same information was being shared with parents and professionals. So just that bringing everyone together, understanding perspectives, it's not us versus them, but all of us together. Thus the Listening Together together piece matters a lot to us. We offer these programs in English, obviously, but also in several regional languages. So in the past or even now, the webinars are offered in English on one day and Hindi same content in Hindi on the next day. We've done professional development courses where if we have enough for a group of people, then we run the same course into different languages. And anybody is welcome to come to any people are welcome to come to both if that is how they want to participate. Right now I'm trying to model where I teach in English on Saturday and then we have quote unquote office hours on Monday in either Hindi or Marathi. And that's an experiment. I'm curious to see how that goes in ensuring that, again, opportunity people have the opportunity to get this information and develop their skills.

Carrie: [00:16:26] That I get why you say listening together because the parent and professional pieces or family and professional pitches so important to help that child. So talking about opportunities to how do people find out about the different courses or webinars or opportunities that you have?

Uma: [00:16:48] So our social media is our best starting point, but what we have discovered so we'll post on our Facebook page, we'll post on our Instagram page, we'll post on our LinkedIn page. Those are our most active where people will find us. But we also have WhatsApp groups, which WhatsApp is a text app and we have a parent group, we have a professional group and we are finding out that through the sharing of these WhatsApp messages and groups is also another way that people are finding us.

Carrie: [00:17:26] That's the great idea to have that group so people can continue the conversation of the webinar or whatever being shared. Is there anything about all this, about Listening Together that you wanted to share that I didn't ask you about?

Uma: [00:17:44] I think just just from a personal point of view, it's been a. A long time ago, I thought my career was headed in a certain direction and I was going to get my PhD, be a researcher, or be in an administrative role. The whole idea of the nonprofit and the impact it can have and the investment we are making is a big one. So I didn't talk a lot about this, but our financial model is essentially take what you need, give what you can. All services to families are provided for free because again, we don't want financial constraints to be a factor. All services or trainings to professionals have a fee but have generous scholarships because again, we think we are making an investment in this human capital that is going to transform not just the lives of the children they work with, but the the landscape for what is possible for kids who are deaf and hard of hearing. So just that investment and the transformation is an exceptionally exciting part of it. Our priorities for the coming years are increasing access, building capacity and fostering leadership because we know that leaders come in all forms and from all walks of life, and I think that's where the transformation will happen.

Carrie: [00:19:20] Well, thanks for that vision of Listening Together and everything that both of you have put into the nonprofit. Because, like you said, you're building human capital in so many different ways and also influencing the professionals along the way, too. So thank you for that.

Uma: [00:19:39] Thank you.

Carrie: [00:19:40] And I was going to switch gears a little bit with your other role that you have in your life. And I think it's a great topic because we are getting ready to transition into another academic school year, which is hard to believe. And we know that students who are deaf and hard of hearing and whether it's an early intervention or a school age, really require some specialized professionals and support along the way. So I would love to take a deeper dive into your role as a teacher of the deaf and also as a professor, and kind of talk about talk about that. So maybe to get started just for by listeners, can you just share about the role of the teacher of the deaf and hard of hearing and how that might have changed over the over the years, too?

Uma: [00:20:34] Sure. Sure. So. I mean, it should come as no surprise to anyone that children who are deaf and hard of hearing and their educational trajectories and opportunities have changed over the last 20, 30 years. When I started in this field 20 years ago this year, it was. Mainstreaming was a goal, but it was not uncommon for children to start in schools for the deaf and then have the goal of mainstreaming. During my time in this field, we've gone from children, come to schools for the deaf to early intervention, happens in the home, and then there are some children who never come to a specialized program. They just go directly into the general education setting. And even if they're, quote unquote, caught up at three. They still have to keep making progress to keep up with all the language, academic, social demands of what it takes to learn in the school. And it is important that a specialized professional is there to support them, not to say that they will always need help, but to monitor their progress to make sure they're not falling behind. So I think fundamentally the rule, the way it has changed is it used to be that students would come to the teacher.

Uma: [00:22:11] And now the teacher is going to the students. And don't get me wrong, there are still teachers of the deaf in programs like option schools where children are coming to them. But that's a model that has changed over the years. We used to have K through 12 programs for the deaf and now they're shrinking and shrinking and shrinking to the point it's going to be early intervention and early childhood with specialized programs for the deaf designed specifically for children who have additional challenges. So in some ways, a teacher of the deaf and all of these roles still exist. But the way the role is changing is it used to be that the teacher of the deaf was teaching kids to. Speak. And now the teacher of the deaf is still doing that. But hearing technology is also helping them to learn to listen and learn through listening as well as really be a part of the general education sector. So to me it comes down to. How are teachers who are itinerants now supporting children not just survive but thrive in an inclusive setting, facilitating inclusion.

Uma: [00:23:37] If a just say an outside, a general ed teacher would say to you, what if you had to give an elevator speech about a teacher of the deaf? What would you say? How would you explain that?

Carrie: [00:23:53] Yes, what a great question. I should have definitely rehearsed this. And I'm going to make all of my students rehearse this as they prepare for job interviews. Okay. So if I were talking to a general education teacher with my role as a teacher of the deaf is which is different than that of a speech language pathologist and that of a special educator. I would say as a teacher of the deaf, I have specialized knowledge and skills in helping children develop listening and spoken language, particularly within the context of developing, reading, writing and academic skills. I am also someone who can help them develop their self advocacy skills and social skills so that we are on the path to leading productive as independent as possible lives post high school.

Carrie: [00:24:49] Wow. That was a great elevator speech.

Uma: [00:24:52] I'm glad this is being recorded because part of me is like, Oh, I want the script for this.

Carrie: [00:24:59] Now we can just pull that little piece out and then we can have elevator speeches for teachers of the deaf and hard of hearing.

Uma: [00:25:07] Yeah, yeah, yeah. And it is a unique role, which is different than that of a speech language pathologist or a special educator. And I've been very lucky to work on teams where all three of these professions were working together, bringing their unique perspectives to support a child.

Carrie: [00:25:28] Mm hmm. Yeah. And just being in the schools, as well as an audiologist of some districts that we go into. And there possibly would only be one or two kids. And if they haven't had that experience before, they are not questioning, but they want to know exactly what is the role and how do they serve that student so that they can have the build the capacity too.

Uma: [00:25:56] Absolutely. And there is a new position statement by counsel for Exceptional Children's DCDD. I think that's still their name, the department, not department division of Communication Disorders and deafness about the role of the teacher of the deaf and the contribution that they make. So if listeners are interested, check it out.

Carrie: [00:26:20] Definitely. And we can even post that or link that in the show notes to so people can take a look at that. I know you have your role at Fontbonne as a professor too. And so I thought I would ask you, what are some of the requirements and curriculum focus for becoming a teacher of the deaf or hard of hearing?

Uma [00:26:40] Sure. So at Fontbonne and Fontbonne has been doing this for a long time, preparing teachers and SLPs who specialize in working with children for deaf and hard of hearing. We currently have to accept the Office of Special Education Projects funded grants where teachers and speech language pathologists interested in specializing in either working in early intervention or as itinerants receive tuition funding to do this. So let me just plug the grants right there at the top.

Carrie [00:27:16] I'm a huge plug because I'm sure we're going to get into shortages later on, too. So what an opportunity again, opportunity for someone who's interested to gain more knowledge.

Uma: [00:27:29] Absolutely. So depending on the program you're in, either your focus is early intervention or your focus is inclusive settings. So itinerant, itinerant, teaching kinds of situations. But both grants the interdisciplinary preparation of teachers of the Deaf and SLPs to provide early intervention as well as the Fontbonne Northeast Interdisciplinary Preparation Project. Our focused on making sure that people are graduating with skills to work in one of these settings with specialized knowledge and skills. So what do you need in terms of background? A bachelor's degree is important. People coming into the speech language pathology program are often coming in with a bachelor's in communication disorders. People coming into the deaf education program are often coming in with a bachelor's in education or related field. I want to encourage everyone listening to know that you don't need a degree in education or speech language pathology is not required to start this. There are other ways of considering entering the field, but a bachelor's degree would be the first step. We have the grant has allowed scholars to join us remotely. So we have several students this year as well as last year. Who are not local to St.Louis. They live where they work. And they get to participate as they are working as teachers. So that would be the two key aspects of the program and the program focus ranges, right? So you're going to learn about auditory development and language development and literacy development, but you're also going to learn about how to work in interdisciplinary teams, how to engage in collaboration. And I think that is a pretty unique feature of what the Fontbonne program focuses on. The interdisciplinary piece almost all classes are taken with teachers and SLPs in the same room, understanding each other's roles, learning from each other.

Carrie: [00:29:59] And you said this is grant funded, right? Right now. How many? So my first question is, how many years have you guys been able to do this? And then second would be, how many students do you typically accept every year?

Uma: [00:30:14] Okay. Good questions. And how many years have we been able to do this? Fontbonne has a long history of being federally funded. The early intervention grant is on its second iteration. The Fontbonne Northeast Collaborative is also on its second iteration. I mean, knock on wood. But we've had success with receiving grants to support trainees. How many students? The largest class we used to be limited by how many clinic placements, our school field placements we could manage. But if you are remote, as long as we find a good placement for you where you will have supervision and and so on and so forth. We are not limited by numbers as such as we were before. We do have I believe it's we have funding for 32 scholars in each grant. And those numbers might be a little bit off, but I can look them up over the period of four years. So we're not getting 32 people one time and taking them through four years, but like eight, eight and eight or something like that.

Carrie: [00:31:31] Okay. And then when they finish the training requirement, they would then have a master's in deaf education.

Uma: [00:31:40] Yes, yes. Masters of Arts in deaf education or early intervention. And if they're a speech language pathologists, they would have a parallel master's.

Carrie: [00:31:51] Wow, that's great. And we can definitely link information about that as well. So another opportunity to. Absolutely.

Uma: [00:32:01] And anyone listening, if you are thinking, hmm, I wonder if this is for me, just reach out to us. We'll figure it out. We have a student this year from a completely different part of the world who is managing the program well. So if you want to be a teacher of the deaf or a speech language pathologist, we'll figure out a way to help you do that.

Carrie: [00:32:24]  Wow. So the speech language pathologist that they would end up with a master's in speech language pathology then, but with the focus on working with deaf and hard of hearing.

Uma [00:32:33] Absolutely.

Carrie: [00:32:34] Hmm. That's always good to know as a specialty professional, too. Well, I wanted to talk a little bit about the shortages. Do you see just from your experiences over your 20 years of being a teacher of the deaf, have you seen the shortages and.

Uma [00:32:54] Absolutely.

Carrie: [00:32:55] What can be done about it?

Uma: [00:32:57] So, I mean, I knew you were going to ask this question, so I went and pulled some data. According to the US Department's listing of teacher shortages in 2018. 19 out of the 43, states or territories are reporting a critical shortage for special education teachers in general. Of those nine states specified that the shortage is for students who are deaf and hard of hearing. I think there is a couple factors to consider. One is. Deafness is a low incidence disability, right? So there and like you said, you go to schools and there's maybe one or two kids. It is unlikely that a school with the budgets being cut and the teacher pay the way it is, can afford to hire one teacher for one student. So we're not seeing a lot of people enter the profession. That is number one for the shortage. The work is not easy in the current climate. Teachers aren't being supported the way they need to be to continue to do the work they are. And this is all teachers. I'm making the blanket statement. We could be supporting our teachers more in a variety of ways.

Uma: [00:34:18] I think that's what has created this shortage. But there are programs around the country that are not only training new teachers to enter the field, but are also creating some alternative pathways. So you might already be a teacher working in an adjacent field, and you can then add this certification to make a somewhat of a lateral move. So you're bringing your existing experience and expertise and adding this on to support children. I think the only way forward is through and we have to understand and address the shortage issue and come up with a variety of ways to continue to support children. I think the pandemic and the tele education, tele intervention piece really helped open up some opportunities and stop people from dismissing tele delivery as a last resort kind of model. So maybe that brings about some changes in the coming years, decades that there continues to be a shortage. And we need to have more professionals trained to do this because like I said, a teacher of the deaf is not the same as a speech language pathologist or a special educator.

Carrie: [00:35:46] Mm hmm. Yeah. And it's great that you at Fontbonne have an opportunity to offer the virtual, because I feel like there's not a lot of universities in the country that offer a program that is specialized in deaf education, or it's a program that might not be serving a lot of kids in a mainstream setting. It may be more focused on serving students who are in a school for the deaf or something like that.

Uma: [00:36:17] So. Right. And it's my intention. I mean, our faculty. Even our faculty is remote. Like, I live in Illinois and teach at a university in St Louis, Missouri. Our other faculty member lives in Massachusetts and is teaching in the program. So it's not as a as a reaction to something. This was an intentional design to meet more people where they are to reach a wider group of people.

Carrie: [00:36:47] So this is kind of changing just a little bit, but not too much. And it kind of gets into maybe. Um, supervision, but more into the real life of being in the schools with whether you're in early intervention or in a school age. But how do you teach or how would a specialty professional like a teacher of the deaf or hard of hearing, integrate themselves into that educational team?

Uma: [00:37:17] So again, another great question. I think the IEP is the IEP meeting, the individualized education program meeting for any child is a good starting point. If everybody on the team has done their job the way they should. By the end of this meeting, we have identified a child's needs and a child's strengths and what the child needs to work on and who will work on it and when and how. So in most situations, an IEP provides a blueprint or roadmap for how each specialty professional is going to contribute to the child's development. And then you might have an intern or an itinerant doing a 30 minute pullout or a 20 minute consultation or a 15 minute push in. And the service delivery models vary. But what we do with our time with the child and the teacher and the peers is, again, what matters. So the the theory part of this is, oh, the IEP tells you how you integrate into this team. But the real world, the soft skills part, is essentially all about interdisciplinary practice. So when I was at Vanderbilt University at the Mama Lere hearing school and we were just seeing this need for kids with CIs in rural counties around Nashville who needed support at school and they didn't have features of the deaf. So people in administration put a lot of faith in me and said. Go take a look, see what we can do. And I was doing outreach without really knowing what it was that I needed to do. And it turns out it is as simple as really listening to the teachers, understanding what their needs are, what their challenges are, and knowing that you are there to support them, support the child, and not there to tell them how to do their job or judge them or evaluate them on on any of that. So the IEP tells us where we need to be and what we need to work on. But our interdisciplinary skills help us do that job. Mm hmm. Which is, again, why I think it's pretty phenomenal that on Fontbonne has brands where one of the focus area is interdisciplinary work.

Carrie: [00:39:51] And you had real world experience of just going out to some rural area outside of Nashville and figuring it out, which probably helps that bring that experience to you as a professor, too.

Uma: [00:40:06] Yeah, yeah. It helps to really keep being present and sharing what you can offer. I did an in-service at 2:30 in the middle of the night for a kid I work with in North India like a month ago. And I was like, Thank goodness I've done this enough times because otherwise doing this at 2:30 in the morning, in the middle of the night would be a little bit challenging. But that's what it is, right? You want to start a conversation? This kid coming into your class is not a problem, is not someone to pity, is not someone to just pass along. This is a kid with potential who will learn and the strategies you use to teach. This one child will probably benefit ten others in the class. And once you establish that, then it's so much easier to work together.

Carrie: [00:40:57] It is. Which kind of segues into another great question that I have for you is we talked a lot about the teachers, but how do you build capacity for students who who are deaf and hard of hearing and to have those self determination and advocacy skills as a teacher of the deaf or hard of hearing?

Uma: [00:41:17] So that's a great question, Carrie. And I think it starts even before you get to the student, right? The child is going to take their cues about their identity, their self image from what the parents are modeling. So I think it starts with how do I, as a teacher of the deaf, support the parents, empower the parents to take charge, to lead, to share their desired outcomes and guide the team on this path. The child is going to pick up their cues from them. And I have a cut this out if we run out of time. But I'll give you a short story. I work with a group of kids when they were in preschool. And as a preschool teacher, you talk to the parents a lot because there's a lot to discuss every day. And I remember very distinctly thinking, wow, I have three different families to describe and look at their child using three very different sets of words. One would say, I have a child with profound hearing loss and wears cochlear implants? One would say, I have a child who is deaf. So with her cochlear implants, she's like hearing. And another would say, yeah, my daughter has a hearing problem. She needs hearing aids. Happenstance. I ended up working with these kids on social skills and the social skills group when they were in third grade. So I had worked with them when they were three and four, and now I was working with them when they were in second and third grade. And lo and behold, these were the words that they were using to describe themselves. Right. And I'm thinking, Oh. It's not. I can't intervene. I can. But intervening now is going to lead to a certain path. Whereas if I had intervened or talked or had a conversation about the word choice and the attitude that families were conveying to their children about their hearing loss of their deafness. Where would we. Where would we be today?

Carrie: [00:43:34] Hmm?

Uma: [00:43:35] So that has always stayed with me and I have made significant changes having learned from that experience and how I talk to children and families. One of the things that I have changed pretty drastically in the recent years is talking to the child about the fact that they have an IEP coming up and sometimes it starts very small. It's like, Oh, we're going to have a meeting, mom is going to be there and Dad is going to be there, and I'm going to be there. And you list all the team members. Mm hmm. But hopefully you progress it to say we're having a meeting. What should we discuss? And just recently, one of the kids that I worked with a long time was just I was so impressed. He said, Well, reading and writing is going, okay, that's not a problem. I could use some help with writing, so some time for that would be good. And then recess is still tricky. I think I need some help from the social worker. Well, okay. Do I even have to be at this meeting, or should we just say that this is done?

Carrie: [00:44:47] That's so insightful that the the student was able to see, okay, these are my strengths, this is where I could use some help and be able to ask for that and articulate it.

Uma: [00:45:00] Absolutely. And this is not a traditionally superstar student, right? This is a student with significant challenges and significant delays. And when we started, the student had no idea what it meant when I said, what's going well at school? What do you need help with? And it took us a few years, but we've definitely built up some self-advocacy and self determination skills.

Carrie: [00:45:25] Right, which is probably for a lot of itinerant teachers. One of the plusses of the job, to be able to have that continuing relationship over the years with students and a joy for you to be able to see the progress that they do make.

Uma: [00:45:39] Absolutely. So when we did. Sorry, I'm changing topics a little bit, but we did a survey of itinerant teachers, which is what we presented at the Cochlear Implant Alliance Conference and in our pilot group, which was about 60 teachers. Teachers said they spend anywhere from 20 to 40% of their time with the child on self-advocacy skills.

Carrie: [00:46:04] Mm hmm.

Uma: [00:46:05] So that continues to be a big part of what it is that we do.

Carrie: [00:46:08] Right. And it's an important part because it's a life skill that they're going to need no matter what phase of their life they're in. If they're getting a job, going to school, being in the community, they have to know more about themselves in order to be self-determined, to ask for the services and supports that they will need in the future.

Uma: [00:46:29] Absolutely. And you know, Carrie, I mean, again, it's been an honor and privilege to have interactions with adults who are living this right. Adults like you, adults like my sister who are deaf, who are hard of hearing and are navigating life because their deafness isn't going to stop them from doing anything. Maybe there is a different way of doing something, but that doesn't mean they can't do it. There's no reason to stop for any reason. And I feel like. I came into this field knowing that the child sitting in front of me today or this year is going to be an adult one day, and I need to always keep that in mind. This is not about passing fourth grade or learning trigonometry. This is about living life. And whatever I am doing should contribute to a good life.

Carrie: [00:47:31] I love that. It's a great opportunity.

Uma [00:47:36] Yes. I'm telling you that word. I mean, as cheesy as it sounds, when I was looking through these questions, I mean, there's this word that keeps coming up. Maybe there's something there.

Carrie: [00:47:49] There is something there for sure. Is there anything that I didn't ask you that you wanted to share today?

Uma: [00:47:58] No. I just want to share that being a teacher of the deaf is a really fun, joyous. Calling an opportunity. And those interested should really consider exploring what this path is and how you can contribute to the lives of children who are deaf and hard of hearing.

Carrie: [00:48:22] And if listeners would like to reach out to you, how can they get ahold of you?

Uma [00:48:27] So I am on social media under my name, Uma Soman. Almost all of my social media is professionally focused, so you can find me on Facebook or LinkedIn. And you can also write to me via email. I am Uma.soman@listeningtogether.com or I am at usoman@fontbonne.edu. Reach out if you want to learn more about anything that I shared today or just want to chat about any of these topics.

Carrie: [00:49:01] Well, I want to thank you today for the opportunity to interview you and the EmpowEAR Audiology podcast. I can just see your passion for what you do, just shine through. And it really does with Llistening Together nonprofit. And then those students that have the opportunity to have you as a professor are really in for a great treat because I'm sure they see your passion shine through as well and become a better professional because of you. So thank you for all that you do, and thank you for being a guest today.

Uma: [00:49:36] Thank you, Carrie for inviting me and creating this platform to share information.

Carrie: [00:49:42] All right. And thank you listeners for listening to the EmpowEAR Audiology podcast. If you like this show, please share with others. And if you can take the time to give a five star review, I would appreciate that so others can find it and enjoy listening as well. Thank you.

Speaker1: [00:50:00] This has been a production of the 3C Digital Media Network.