Hearing Loss LIVE! Talks with Gloria Pelletier

Meet Gloria Pelletier, Licensed Clinical Social Worker. This will be the first in a series that is meant for folks with hearing loss seeking therapy and for therapist ans social workers to understand how patients with a hearing loss can be diagnosed.

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Transcript

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Hearing Loss LIVE! talks with Gloria Pelletier.

Julia: 0:04

Good morning. Welcome to Hearing Loss LIVE! We are all about connections we say quite often. And I hope not to bump my microphone and make it clank all through this like I did the last one. But fair warning, maybe clank signs in the captioning. We love connections back on track. We're all a little ADD this morning we've decided. So hang with us. Connections are very important we talked about it all the time. And we have with us today Gloria Pelletier. I think I said it right. She is a licensed clinical social worker. I think I got those in the right order. And she has been a great inspiration with Hearing Loss LIVE! on all things to do with clinical social work and patient and therapy relation. And for me, I'm gonna go back. I'll give it to Chelle here in a minute. But one of the things I recognized when we worked with the state was services didn't seem quite right for those with a hearing loss. There was a lot of misconception. And so I love the fact that she has, she is going to be a power force. That's all I'm gonna say she's going to change the world on how social workers, therapist can work with their clients with a hearing loss. Because it's been a journey for herself and understanding. And I'm just I'm super excited. But I want Chelle to start with how she met Gloria and a little background because she and Gloria work really hard together to help improve our services. And to help Gloria move forward with her new services that she's working through getting set up as as a as a therapist, I'm done. Chelle.

Chelle: 2:06

okay. Um, I lived in Arizona, many years ago, 10 years ago, I was living in Arizona, and I looked for a nearby HLAA chapter, which happened to be Prescott. And so I got in touch with the guy who ran it. And Jack is a great guy, we connected right away. And he had these wonderful meetings where like 20 people came and I was like, wow, in person, 20 people chapter meeting. So I was really impressed with what he did and how he worked it. But I moved back to Utah after that. I- now 10 years later, Jack and I still email back and forth. And now my mother lives in Prescott. So I was visiting my mom and when I visit my mom, I visit Jack. And Jack introduced me to Gloria. It's funny, we connect it, I think pretty much right away on all things, hearing loss and other things as well. I like that she gives me a new look at hearing loss, a different perception. And some of the things that I've learned from Gloria been Wow. So I'm really glad I met Gloria And we're working together and I to see her changing a lot of things here in the future. Julia; Gloria, go ahead and give us a little information about yourself, and, and thoughts that have come across that we want to share with our audience when it comes to hearing loss and therapy and, and both sides of the table because I think you have an experience with both and I think it's great.

Gloria: 4:11

My name is Gloria Pelletier. And I'm a clinical social worker, and a licensed substance abuse counselor in my professional life. But in my normal life, I am severely hard of hearing. Actually, they have now classified me as deaf. Hence, these so I can hear this podcast. When I realized how bad my hearing was it was very frightening for me, because I was terrified to do therapy again. I was terrified that I would miss important cues. I was terrified that I wouldn't hear the right words. And so I went to voc rehab, and I asked them to help me and at first they were like "here's your hearing aids, it's all good." [laughter] It was like, "No, it's not all good." And so I worked with a voc rehab counselor who is for the Deaf and Blind because I also have visual problems. And it's probably, it's kind of a project for them. And we have worked very hard in the last two, three years to get me to this point where my practice can start. Because nobody knew how to deal with the hard of hearing individual who was not culturally Deaf, or legally blind. And, and somebody who is verbal, like I am, "no, no, I don't want that. No, that's not gonna work. I need this." And so to give them credit, they assigned me their best case manager, and we have worked really hard to get me here. And it is wonderful to be on Hearing Loss LIVE! And I'm grateful for you guys, just to let you know.

Chelle: 6:08

Thank you. Great introduction. I love how you outlined the VR services and being able to say, "no, that's not gonna work." Awesome, awesome job. I wish more people would say that. Unfortunately, those of us with hearing loss don't know enough to say, "no, that's not gonna work." So that's why we hope people will follow our podcasts more and our blog to learn about the different options. So one of the things that Gloria and I have discussed a lot when we get together is how therapist can miscue hearing loss and it can turn into all these other disorders. I mean, I've heard of the dementia link in the past. And that was a little frightening. But I kind of understand that. But when Gloria started talking about all these other disorders that can be assigned to hearing loss, I was like, "Oh my God." [laughter] We were talking about an instance at one point of me being a teenager, and both me and my mom, remember this, I was about 17 or 18. She was talking from the living room, and I was in my bedroom. And I couldn't hear so we were starting to walk towards each other. And we're still talking, you know, I'm like, what? And in she-- we got close together. And and she said, :for the third time." And I was like,"well, for the third time I didn't hear you," and Gloria said that's known as oppositional defiance. I was like, Holy crap. Yeah, I think I was an oppositional defiant person, because I was defensive about people getting mad at me for repeat. So I want Gloria to talk more about these miscues.

Gloria: 8:12

It's really very interesting to me, when I started looking at this and actually looking at my own life and how many times I was given a label for nothing more than I couldn't hear what they said to me. When Chelle was talking about her experience, I was trying not to laugh because I knew immediately what the therapists would be saying. You know, she's just ignored her mom, she doesn't want to hear it. She's just being oppositional. And the truth was,

Julia: 8:49

So I want to throw out there, Chelle, when you looked she didn't hear until mom started going down the hallway, Chelle came out of her room, everything was a blur. So children oftentimes are given some very negative ideas. And it's not it's not true. And if you are to wear that losing a up positionally deffiant of your parent, and as parents, we've sense, like hearing doesn't affect behavior, or doesn't affect the people around you, and how it affects then you're going to misunderstand what you're seeing. The favorite one I like to describe is I can intently, I'll use Chelle. I am all been there, right? I want to point out, you had a hidden intently looking at you, Chelle. And I'm, I'm trying to read your lips. But I look angry. And I had a therapist, tell me one time, "stop that, stop that you're freaking me out." And I hearing loss, correct? Like it's so so. Okay, how this is where, was like, "What? What am I doing?" And she's like, "you're staring at me." And I'm like,"well, yeah, I have to be able to read your lips." And if you didn't understand that concept, then you might put it down as pathology. Client is angry and if you have a hidden hearing loss, what tools do you think a defiant, as opposed to confused, because I'm not speaking well. So these, we see these kind of misrepresentations of diagnosis is quite frequently in the Deaf community. And when I first went in for help, I also had very interesting experiences with the social worker could. And I know this isn't in the DSM? And I therapeutic community misdiagnosing me, and I know what my diagnoses are. So I found that very interesting, I really liked the one when you're looking at very intently to see don't even know if it'll work. But But is it? Is it appropriate what that person is saying. And then you wait for a few seconds, right? Maybe 15 to 20, and that's a long time to people, to make sure that what you heard is what you heard. And then you might repeat it back, because you want to make sure that you to say, can I ask you do you have a hearing loss. You know, understood what they said. And now you have another condition that looks in the DSM. And the therapist is like, wow, she, she's just really not paying attention. She has ADD or maybe she has ADHD, or maybe her anxiety is so bad, that she they're seeing all of these DSM check offs and going oh, yeah, can't concentrate. And so it's very often that people with hard of hearing come into conflict with traditional mental health training. And that's kind of what I want to prevent. And what before they start diagnosing? Is it appropriate to say, can I ask I want to talk about. I'm grateful for the opportunity to do that. So. if you have a hearing loss? I don't even know if that's against the rules or not. But how can we make that maybe, so that a person can think about it?

Gloria: 12:57

It should be on the checklist? You know, do you have vision problems? Do you have hearing problems? Do you have a physical problem? But it's not. And what happens is when you're in school, rarely are you taught to ask those questions, because, you know, they're probably in the file somewhere, right? But unfortunately, and somehow Chelle escaped the, and I escaped, and I don't know if Michele did. I escaped the hearing test at school. Because I watched them and I knew it was a test and I wanted to pass. So since I'm so old, they used to watch, right? [ticking noise] And I'm like, I can't hear that. So I waited and watched everybody in line and I was in the back. And I'm like, okay, when they get to that tile on the floor, I say yes. So they got to that tile. I said, "Yes." So I passed. And so I know they have more significant ones, but they still doing stuff like that at the doctor's office. So it's very easy to escape detection. And so sometimes there's a supposition, if you're RH you have already been tested, and it's not true. [barking] That's my dog.

Julia: 14:24

I'm sure mine will bark at some point too.

Gloria: 14:29

I'm sorry.

Julia: 14:30

You're okay. No worries, Michele.

Michele: 14:34

I just wanted to respond to Gloria. You know, when I was diagnosed with hearing loss in childhood, the doctor told my mother that I probably had had a hearing loss for years. But when you're a child, you don't know that how you hear is not the normal way and so until I flunked that public school hearing screening, I had no idea that I was different than anyone else I knew I have to watch and you know, as an adult, looking back at my childhood and writing about it, and that's a therapeutic thing to do, when you've just been tossed into the world of hearing loss without any help, and I had that one diagnosis. That's the only time I saw a doctor in my entire childhood, and I was left on my own to figure it out. That's very traumatic. But it taught me a lot of good things. But I wouldn't wish that on any child. And, you know, I think people with hearing loss, do have post traumatic stress. I was hyper vigilant. Like you Gloria, I watched. I always tried to be at the back of the line, so I could see what others experienced. So I could prepare myself. And, you know, I didn't really try to hide my hearing loss. But there was no help for me. I mean, the school didn't approach me. No counselors, none of my teachers, nothing. And I had a very severe hearing loss at the end of high school. I actually had a very severe depression, my senior year of high school. At the time, I think I credited it more to my kind of traumatic home life, because I had some other issues in childhood. Hearing loss wasn't at the top of the list for me. So I think that allowed me to not give it a lot of attention. But I, looking back, I realized it had a lot to do with my hearing loss. I was just so depressed because I had lost hearing to a degree where I couldn't function like I always did. Lipreading wasn't always working for me. So that's true. And you know, someone who's had a childhood like mine, you're hyper vigilant all the time. And that takes its toll. And so, and like you said, there's not a lot of understanding, a true understanding, about what hearing loss is, even from state agencies and professionals. And so, and for lack of that, I decided, like, overnight, I'm gonna have to do this own my own, I'm going to have to figure it out. And I started doing that. And that kind of turned my life around. But people with hearing loss shouldn't have to get to that point. There should be help for them. And when a child is diagnosed, of course, I was diagnosed in the late 1960s. So there wasn't a lot back then. But I think it's great, what you're doing and this pilot program in Arizona, that's really encouraging to me.

Julia: 17:55

Yeah, I agree with you there, Michele. One of our goals here at Hearing Loss LIVE! is to, to help states understand that they're under serving those with a hearing loss. And that people with a hearing loss, whether you're new to it, had it forever, you have rights, right. And you can say no. So Gloria, kudos. Because oftentimes, we find that they don't want to buck the system. Oh, that cost too much. I don't, I don't need that I can put up with this. And, and, unfortunately, ADA laws are written to kind of, I'm trying to politically correctly do this. I'm not going to, it favors employers, right? It favors business, certain businesses, certain organizations to do the cheapest thing, and expect everybody to do it, or everybody to, you know, get what they need. And that's just not true. That's not true, you know. And so every time people-- every time our hosts go out there and ask for their truth, it's just so, it just broadens it and and the fact that you were able as a social worker to see "oh, there's this gap that's being missed in mental health." Because I thought it was just me being silly. So you kind of validated what I came up with a while back, long before we started Hearing Loss LIVE! That my concerns around the mental health industry, not knowing- some of that comes from having a student in mental health programs, actually two different programs where it was very misunderstood. And I thought, wow, there's just a long way to go with some of this. And my dogs barking too, by the way. So. Okay, that's my soapbox. What else was on our question list Chelle? I've forgotten. So we've got about a little, about 10/15 minutes.

Chelle: 20:22

Go ahead, Gloria. Yeah, I know. There's all kinds of things we have talked about. So let's see. The and here we go. You know, the ADD thing here. So, okay, I got my train of thought back. Unit. Well as the hard of hearing specialist for Utah, they have a list of counselors for Deaf and hard of hearing. And I remember asking my supervisor, "are they really trained on hearing loss?" And she goes, "I don't know." You know and I was always thinking, No. Luckily, when I did some sessions, myself a year or two ago, I know enough about hearing loss to tell my counselor. I told her, I need to lipread. I even, she wanted to use Zoom and I'm like, No, I would prefer Google Meet. [laughter] So, you know, I was able to tell her everything I needed, and we got along well, and I don't think she miscued me, I hope. But anyway, I am really excited about this thing Gloria and I are working on about social norms. Oh, my gosh, we got pages of information put together. Do you want to talk about that more Gloria?

Gloria: 21:52

My favorite subject. The thing that I find when I was working, I worked in psychiatry first, right, PTSD and patient program. And they, they train you to be very non-committal, like your face is very blank, you're not giving away any emotions. You're not, you're just listening, being very listening. Then I went to hospice, and that did not work at all, I needed to have expressions because, you know, their bodies were deteriorating, and they couldn't see and they couldn't do stuff. And I was like, really kind of terrified. And, and then what I realized is that, unfortunately, in some places, sometimes, with some people, they cannot get away from the training. So those of us who are hard of hearing, we need more expression on the face. We need people to lift their eyebrows. We need people not to say, "mm-hmm" I can't hear that. I cannot hear that noise, even with my hearing aids on. And if you're six feet away, I'm not hearing at all. And a lot of people make that noise without moving their head. So it's not like, "mm-hmm," it's,"mm-hmm." So it's extraordinarily difficult to get that interchange between your therapist, and I'll just, I'll just use my therapist, for example. I said to her, I can't hear that noise. I know you're green. Or maybe you're not agreeing, but I can't hear it. So she's, she's okay, I'll use ASL. So she tried this? No, no, no. That takes too much effort. So she tried this one. Oh, I see. Right. So she's like, Oh, no, my hand is falling off. And then she tried nodding. And she's like, I feel like I'm on a rubber band. [laughter] And we were laughing because it takes a different presentation from the therapist, for the client to understand what's happening in the session. And if the therapist doesn't know that, and the likelihood is they do not know that, a lot of miscommunication happens. And that's really the wrong place for it to happen. And what happens is that the client has one perception, and the therapist has another one and they collide. And, unfortunately, many of us who are hard of hearing learn to just keep our mouth shut because we were told, you know, just be quiet. I'll talk to you later. I'll tell you later. These kinds of behaviors from our family, our friends, indicate we're supposed to just be quiet. We'll get it later, right? We'll give you a synopsis because it's not as important right now as I am, because I'm hearing. And so you go into the therapists office with that same thought process. And so you don't tell the therapist. Well, you don't know. I didn't know. She was even saying "mm-hmm". I think Chelle gave me the first clue. She says, I bet she's going'mm-hmm." And I'm like, "what did you say?" [laughter] I didn't hear her. And when she told me, "Gloria, I'm doing this, 'mm-hmm'." I went, Oh, my God, how often had that happen in my therapy session, and I thought she was just being very blase about what was happening. And so that's such a simple cueing, but that miscueing can create tremendous anxiety, both for the therapist and for the client, because the client thinks they're not listening. I'm not as important. And you've been given that cue before, right? We'll talk about it later. Not right now you're taking too much time. I'll tell you what the doctor tells later mom, because it's just, you know, we just need to get on with it. Because it takes me longer to talk, and to process and to respond. And so sometimes our family I think, is well meaning, but they don't understand the impact that has on us. And that can and often does translate into anxiety. Am I going to say the right thing? Did I? Am I taking too long? Does anybody want to hear me? Do I have anything that is important to say? And then we get depressed. Because we want to be heard. Every human being wants to be heard and recognized. And if you have enough negative events happening, and you don't have any way of mediating that you will find yourself having you know, depression and thoughts and sadness. And when you go to talk to somebody, I'll talk to my friend about it. They're like, "What do you mean? That doesn't make sense. Of course, you can hear you can talk, right?" Since I can talk I can hear. And I'm like, "No, I'm deaf." They're like, "No, you can talk." So all this stuff really leads to a lot of problems. And I, I found that there is not really any good information about hard of hearing and mental health. That was one of my projects to find a pilot project, to find something that would help me, even I went to the Deaf, they had a, a substance abuse treatment program back east, very progressive, and now it's closed. Funding. So I couldn't find anything. I really could not find anything. And I thought this is not okay. Because, Julia, I also felt like what's wrong? What's what's wrong? There's something wrong in this whole modality. And honestly, I wasn't taught, and I did a survey of my friends who are in mental health, and I said, How many of you ask, do they have hearing loss? I waited, it is zero. Yeah. And I asked, Do you provide CART? That was like,"What? What are you talking about?" I wask like okay. Have you ever considered that their depression or anxiety might be because they have hearing loss? Zero. And I thought, wow these are really wonderful therapists, I mean, amazing people. And some of them had huge clinics. And they've never asked if they had a hearing loss. I think it's because it's so hidden. So many of us. Just like Michelle, she speaks very well. If you didn't know she didn't have hearing loss, you wouldn't know it. I speak very well and I am technically deaf. So I think that hidden disability is always the hardest for people to understand. And I also think that there is a lot, no, I don't think I know, there is a lot of misperception in the mental health community about hard of hearing. And no, we're not culturally Deaf. We may be deaf, but we don't identify as culturally Deaf, we identify still in the hearing world. And that confuses them. So, I think there's a lot of work to be done. And I think that I'm very excited about it. And I was very lucky to get a case manager who said, "Okay, we'll do it."

Michele: 30:37

You know, I'm not social norms, a lot of us grow up, learning to be diffident. My mother was fearful of everything. And so she also was overly considerate. So she put

Julia: 30:56

We're at the 35 minute mark, and I and I love this even strangers well being above her own. And so when you grow up with those, those social norms that aren't positive, you have to work hard to unlearn them. And I think that's what's going to happen have to happen in the hard of hearing community, because what I hear from a lot of people, when they talk about the hard of hearing that they encounter is that they're timid. If they're out somewhere, especially travel, they don't typically travel solo, they typically travel with a companion and their content communicating through that hearing companion. So you kind of have to unlearn a lot of things. And thank goodness, I was always adventerous and independent as a kid. And I kind of carried that into my adulthood. But I had on learn a lot of things. And in doing that, I'm able to educate other people. My vocational rehab guy knew how to deal with a client who was culturally Deaf. But he had no clue about me. And so I educated him. He was really interested in the things that I used for communication, I would use my captioning app on my phone during our in person meetings in his office, because I couldn't lipread him 100 per sound. And he was like, that's really cool. And he was very unique, fortunately, that he was not happy with the status quo. And he said, "If I don't know how to relate to someone who was hard of hearing, my co workers don't know either." So he encouraged me to submit a workshop proposal to our Health and Human Services Division on One Size Does Not Fit All. And that's been such a thing in my life. Because I've not benefited from hearing devices. and FM systems, nothing for me, I have severe hyperaccusis, so I can't tolerate that volume. And people try to make you try all of these things that you know, don't work for you. Instead of just giving you what you've requested, because you know that what you've requested works. And about the only thing that works for me, when lipreading and other things fail is CART, real time captioning. And I think therapists should have access to that. I think there should be funding to provide that. I know in my own therapy, I started therapy right before COVID and then we went online, Google meet was great. But when I met with my therapist in person, I had a hard time understanding her and I couldn't use the captioning app, because there's a confidentiality thing. And I finally just quit going to therapy. One thing was my therapist talked more than I did. And everybody told me that's not normal. So, so I thought I better move on and look for someone different. conversation. And I want to continue, but we might need to do it in a second pod- oh, actually, I think it's going to be a whole series of podcasts before this is over with and much needed podcasting. Right? Yeah. all on the same level. I think, Gloria, thank you for joining us. Thank you for speaking your truth, following your truth, being upfront and candid and helping not just HoHs but therapist who need to really know they need more training on hearing loss, right? And how we can maybe make that easier to maybe stop some misdiagnosis. And maybe somebody out there a viewer if you've been misdiagnosed and you want to talk about it, bring it to us, let's let's openly talk about how we can fix that or how you fixed it with your therapist or or didn't, or maybe it's a doctor's office? Because I think there's a lot of misdiagnosis there, on what's the difference, especially when it comes to dementia, What's the difference between a hearing loss and other diagnoses? I'd be interested on. One of these days, I'm going to become statician and I'm going to go like do all these weird studies that nobody does. Okay, if we're getting long, so I'm gonna stop there. Thank you for joining us today. On our website, we are going to start rolling out more and more packages on our Patreon and Buy Me a Coffee. We have a free package which has a whole bunch of goodies in it, and then we'll have different levels of packages. One will be our outtakes and our laughs and our you know, what we do before we even get to the podcasting portion of our of our day. Our lipreading concept class is going to get open again this fall, watch for the dates and times for that and join us for the Lipreading Concepts Class and look for information on that. As well as if you're leery of joining people and being in a space with live teachers. It will also be available for purchase on our Patreon and Buy Me a Coffee and at our website so that you can participate in the lessons and get yourself comfortable with understanding lip reading, and be able to learn how to use the concepts to have a better communication and then hopefully that gives you Remember to subscribe, share, like, send us a testimonial if some confidence and you join us in person when we get to you can, or even give us a little bit of funding. We want lipreading shapes next year. Anything else my, my lovely to make it into our next year fully funded, and so we're hoping you'll help crowdfund with us. Talk to you later. ladies. All right. Thank you for joining. Bye. Want more Hearing Loss LIVE! now available at Patreon.