We here at Hearing Loss LIVE! know communication is tough. Family dynamics change with hearing loss. We want to share our knowledge on what we have done to help with family communication. We want you to share your knowledge on what you have done to help with family communication. We all want to live our best lives and family can help us with that.
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Welcome to Hearing Loss LIVE! talking family and communication.Julia:
Hi, welcome to Hearing Loss LIVE! This week's video podcast is going to be about family and communication. I'd like to introduce you to Michele Linder, Chelle Wyatt and I, myself am Julia Stepp. We have a blog up about family and communication. And we think it's important that you know about family and communication and how that might work for you and your family. I'm going to start off this time, with just a couple tips that I found worked for my family. The biggest thing I think I've seen is that if you can, and have a support group that you can attend with your family member with a hearing loss, do it. May not need to be every time. That's fine. But it does make you aware of what communication needs that you might be unaware of. For my family, it was things like face the person with the hearing loss, it was everybody lipreads to some extent. So make sure they can see your face. Don't do this. Just, Just little tidbits and and, I learned those through the support groups that I captioned for. I would hope everybody understands, and they don't, communication changes for both parties. There's grief involved, there's change in your relationship. And you guys need to learn a new way to communicate. I experienced that with my grandmother. My kids, I accidentally, not on purpose taught them how to handle hearing loss with friends and family. And they in turn, were teaching their friends. These are all things that happen when you learn to communicate together. So I get very passionate I think about family and communication and how important it is that we can teach each other to be better with our communication. Chelle, would you like to give us some thoughts on your family communication and what you did to help that when you realized you needed help?Chelle:
Sure, let's see. I think that I started losing my hearing as a teenager. And there are instances when we think back where we really remember like, "oh, she had a hearing loss and we just didn't know it." But it wasn't a really strong one until my 20s. And my family, I always thought was pretty good working with me as much as they could. And we had little to work with actually except, you know, I had hearing aids and that was supposed to fix things. And I got my hearing aids when I was 23. So there were some frustrations for a while with my hearing aids because that was supposed to fix everything. And I didn't know any better. My family didn't know any better. And that's too bad. It's really too bad that we didn't know more, because it would have helped us a long time ago. So once I learned a few things about hearing loss, and it took 18 years of wearing hearing aids before I learned more things [laughing]. That's a long time to go without proper education. How do I say it? There's a long time to go without knowing that I was lipreading, without knowing that hearing aids had a six foot radius, and that was that I needed assistive listening devices beyond that. There's just a lot of unfortunate things. Although the family did pretty well with it. We could have done a lot better Had we known earlier. So I once I started to learn about hearing loss, through the Division of Services of the Deaf and Hard of Hearing, through their classes and presentations. I learned all these things like oh my gosh, I really do need people to face me. And this whole time every time I learned something I was blogging furiously [laughing]. And I was passing the links to my husband and to my family and they were learning with, me and there was, I think, sometimes some anger in those old blog pieces because I was like, Why? Why didn't anybody tell me earlier? This is not fair. So, but now now it's been, what, 12 years and we're all communicating better. I did ask my my parents at one point, why? How is it that you dealt with my hearing loss so well, my mom said, "because you got mad at us a few times." I don't remember that. But I guess I had to get my point across and, and my kids they just grew up with my hearing loss. So they didn't know any different. And they did really well, too. And I didn't think they caught on to a lot of it until we had a barbecue in July, with all three of my kids, and one of them has a cholesteatoma which is like his eardrum has been messed up and he has no hearing and his left ear. So I was in his left ear. And I made it a little teasing remark about him to his siblings. And when he looked at me, and he said, "What?" and I was like, "Oh, never mind." And he said, "Mom, you can't say that. You told us never mind was the worst thing you could ever say. So you have to tell me now." I was actually quite pleased that he did that. He stood up for himself. He said, Don't you say never mind me. And I was gonna repeat it anyway. But I guess that was just a little lesson in howwell I helped my kids, too. Julia:
Thank you, Chelle. Yeah, we don't realize until we-- little moments we pick up, right, that we've realized, oh, wow, I taught my kid that I didn't even know it. Michele, can you share some insight on your thoughts with family and communication?Michele:
My mute button doesn't seem to want to come on today. I've had trouble with it earlier. Sure, I'll be glad to share. This is an area that I'm still very challenged, and you send me out in the world, anywhere among strangers, even to another country where they don't even speak English and I'm great at communicating what I need, and telling people, you know, finding a way to convey what they need to know about me and my hearing loss and ask for what I need. But there's something about family that really trips me up. And I've been thinking a lot about that since I was trying to write for the blog. And I think I'm good at asking people one on one for what I need. But when it becomes a group dynamic, it's not so great. I'll give you an example of a one on one thing. This morning, my granddaughter spent the night, but this morning, she got up and she washed her face, got dressed and I was making her breakfast. And I had bought her a new top and it had some white spots on it. So I was kind of afraid that I maybe splashed some bleach on it. So I asked her to go on the bathroom to use a damp washcloth and she was gone for a while. And then she came back in the kitchen. And she said "it was toothpaste." And okay, my mind stops at it. And so I reminded her never start a sentence with it or any other pronoun because my brain is scrambling trying to figure out what "it" means. Say instead, "Mim, the white spots on my top. They were toothpaste." Then I know exactly what you're saying. But it really doesn't give me a whole lot of info. So I'm really good at that kind of communicating with my family about needs. But, you know, there's something about a group dynamic. And I realized this morning, that there were some members of my family who are much better at accommodating me than others. And when I'm not one on one with someone, I can't really instruct them because the better family members kind of take over and, and you know, help me out with the other person who's not great. And I think that almost takes away the opportunity for them to improve. Because there's someone who's better at it who's stepping in and making up for their lack and I just don't deal well, with group dynamics sometimes. Another thought was that with our family, we're emotionally invested. And sometimes we want to be a little more considerate of our family because we love them. And, you know, I didn't learn to really tell people what my needs were, for so many years, because I had no idea I just coped really well. And, you know, my family got used to that. And so when it became necessary for me to get better at communicating what I needed, it was almost like they had lived with me for all these years and years and years. And so it was hard for them to see me a new light to see me at a new level of hearing loss. And I tell people, progressive hearing loss is the gift that keeps on taking. And so you're constantly having to adjust, and sometimes that's hard, harder for your family, than it is you because you're adjusting gradually, unless you've had like a major sudden hearing dip, and I've had a few of those. But then you have to ask your family for different things. And then they just kind of didn't see it because you were coping so well. I remember the first time that my husband really got it, I sent him a link to a hearing loss simulator, for him to listen to see what my hearing loss level was like. And he didn't say anything, he just started crying. Andhe said "I never realized you miss so much." And that was a great thing for him. However, sometimes it's hard for our family members to get out of a habit of assuming things or, or forming new habits of better communication. And that's a challenge in my, in my relationship with my husband. I have to ask him almost every day not to talk with food in his mouth, and, because I can't lipread, what he's eating and talking at the same time. And that's kind of prevalent with a lot of people. So there's just so many things that I know I'm going to learn about this from the people who come to us for help. And I think we all help each other and I, I admit I don't know a lot about communicating with family and friends successfully. I have a lot to learn on here. I'm great with strangers. I'm great out in the world, but family really trips me up. So I'm going to be taking notes, and I'm good at telling other people what they can do to help with their family and friends. But that's hard to apply that to my own life. Thank you, Michele. I, and it is I think we do, we get in our habits and and when change happens, we don't know how to handle change, and with hearing loss I've seen over the years how couples get mad at each other, right? That, that they, they instead of communicating, they get angry and they and they blame the hearing loss. You're too focused on the hearing loss. You don't focus enough on the hearing loss. Instead of just sitting down and saying, okay. Your hearing loss is making us not go to a movie. How can we rectify that? Do you want to rectify that? Are you okay not going to the movies anymore? And maybe you binge watch Netflix or get a bigger TV so you can do movie at home. Just those little things we don't think about and being honest with the grief. I don't think you know I think it's hard. It's like that elephant in the room. Grief isn't understood with hearing loss from either party. So I love that you sent your husband to a simulator I, I I-- We'll make sure that on our website and on one of our memes because that is really an amazing way to understand what your hearing loss partner, friend, family member is facing. It will really open your eyes. If you are the hearing loss person joining our podcast today. We hope you use the link with friends and family and help them understand that can maybe open to communication. And one of the important things you said, Michele, we don't always get it. Right. Right? As the hearing person, I'm going to say I forget all the time to do little things and I get mad. I shouldn't get mad. It's not my right. Right? My husband can't hear me while I'm doing dishes in the other room, period. I know that I can't get mad because he didn't hear me. And it's those little things we have to work on. Chelle?Chelle:
Yeah, both of you have brought up several good points. One of the things that Michele mentioned was coping so well that family forgets and, and I have and I have three kids. The oldest has a mild hearing loss right now with tinnitus. She's sort of like me, but not as severe, it started later, not sure why that's there but it is. My middle son, he has auditory processing disorder. And as I mentioned earlier, my youngest son has cholesteatoma and really doesn't hear out of one ear and that eardrum is completely missing to where he can't even go swimming right now. So he's hoping to get that repaired. So I was afraid for a long time that I coped so well that my kids didn't pick up on the good habits for hearing loss for themselves. But my son saying the other day, don't you tell me never mind it was like, Oh, good. They were paying attention. So that's good. And as more with families, like the group settings, I pretty much got it with my kids. And Michele mentioned, you know, one kid will step forward and help but for me it's any one of my three kids will step forward to help. We like to play cards, very rowdy, two to three hour long playing card nights [laughing]. And they're loud. And I'm and my husband here he says he has to leave the room because they're so loud. And I think they're so loud because they're used to my hearing loss. And they're speaking up for me. And, and I've learned to like just almost put my hand in the middle of the table while we're playing wiggling around, go, Wait, wait, wait, I didn't catch that. And one of them will pick up and say, and repeat what was said, no questions asked. If it's trying to --they're reading cards, which never seems to work well for me. They read the cards for everybody and then they automatically hand me the card read it too. So it's worked well with the kids. Now with my husband, it's a little bit different. And I picked but I picked up some interesting perspectives from him. And one of them was one day he came into the office when I was typing away, and he didn't get my attention first. So this was part of the problem. But I bluffed instead of saying wait a minute, I didn't get that. I did the deaf nod. And he actually got pretty angry at me. And he pointed at me and he said, "You know what? That's like never mind to me. You're telling me I'm not important." I was like, Wow, my goodness. Okay, point taken, I will never forget this and I never have. So there's another issue that my husband and I always have to is talking from other rooms. We all do. We're supposed to, so whoever starts talking first is supposed to go to the other. But it doesn't always happen. And there's been times when I blurted out whatever I was going to say from another room because he's hearing, he's going to get it right. But then he gets mad and he comes to me and he says, "Well, what if I have a reply? You need to follow that rule too." And whoever starts talking goes to to the other. So there's been a lot of learning experiences over the years.Julia:
Thank you, Chelle. Michele.Michele:
Just listening to each other talking here. We always come up with thoughts on situations that arise and you know Chelle in our office and our husband needing her attention. For me, and you know, we are gonna make up a fix for our own family dynamic, and we're all going to be different and that's, that's okay. But when I'm doing something like if I'm using a sharp cleaver to cut vegetables or If I'm on the computer, and I'm in the middle of writing, and I'm in that zone, I don't want to have to look up and say, just a minute, because it's gonna be more than a minute. You kind of need to be patient, unless somebody is dying or bleeding, just wait for me to be able to get to a point where I'd finished my task. And then I'll come to you and say, Hey, I saw you standing there, but I couldn't stop. What is it you needed. And I think we need to be a little more understanding in those kinds of things, because people with hearing loss, we're on alert all the time. And sometimes our family expects that of us 24 hours a day. And if I'm in the middle of something, and I'm, you know, doing something I need to look at, I don't, I don't want to miss a finger chopping vegetables, I don't want to lose that thought in my head when I'm writing. So we have to convey those things. And, and my family is a lot more receptive now about those kinds of things than they used to be. But we really have to work this out in our own family dynamic, it's never going to be perfect. There's a lot of trial and error, but it's worth keeping at it and trying. You know, it just occurred to me, I need to take my family members who are less accommodating to me, and I need to take them on a training session with me, and and try to get them to do some of the things that my other family members who are great, do. But one quick story, my daughter-in-law was with me in Denver, and I needed to get some copies made. And we went into the copy store and I sent that person who was waiting on me the email with the file that they needed for the copying. And then we went away and had lunch and then came back. We walked back into the store, the same person waited on us. But instead of addressing me, he addressed my daughter-in-law because she was the hearing person. And my daughter and I looked at him and said, "What are you talking to me for, she's your customer." And and some people just are better at doing that kind of thing. It's a logic thing for them. And some people aren't. So we kind of need to train other family members to react in those same kinds of helpful ways. And so I thought of that story. And I think it demonstrates a lot of things that our family can do to make us not be so invisible to the public.Julia:
Thank you, Michele, that, that's a good one. And, and that's something I think we all see often. And hear about that. For whatever reason people address the hearing person, not the person with the hearing loss when they're out in public. And, you know, that's probably number one communication rule, don't speak for me, unless you want them to, and that then you can figure how that looks. But it's very dismissive. And it's, it is something you have to train your family to understand. That's not how that works. My grandma, she hid her hearing forever until she couldn't anymore. And by then it was too late to break her out of the bluffing and it caused a lot of problems. And that's a podcast in and of itself. But one of the things in public because people didn't know she had a hearing loss, she would, they would look at her and she would lipread them. But at some point, if she needed help, she would turn to me and I would realize that she's not understanding what word was being said. And I would either try to find a different word, or fill in the gaps so she could follow along. And that actually, we didn't ever sit down and talk about it. It just happened naturally between us. So some of it might come natural, but some of it won't. We are working hard on a workshop to help with family members, and how to get better communication with those in your family with hearing loss. It's, it's scripted towards the person with hearing and we hope you look forward to that down the road. Keep an eye out at hearinglosslive.com as we start to roll out our workshops that you can participate in. Any last thoughts as we go around? Remember out there, hearing family, when you can join your hearing loss partner at a support group whether online or in person. We give references to hearing, Hearing Loss Association of America, sorry, stumbled there minute HLAA. You can always go to their national organization and see if there's a local chapter. We also refer SayWhatClub which is a national organization that is an online forum. They both have great insight in tidbits and and always have helpful ideas for you to be able to communicate better. We look forward to seeing you next week at hearinglosslive.com And join us, follow us, share our information. Thank you. Hearinglosslive.com. Join us at Hearing Loss LIVE! next Monday for self-advocacy.