Hearing Loss LIVE! Talks with Shanna Groves, #lipreading mom

Hearing Loss LIVE! sat down with Shanna Groves to talk all things hearing loss and parenthood. Join us as we find out more about Shanna and her family dynamics. What helps her to be successful with hearing loss and living life to the fullest.

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Transcript

Today Hearing Loss LIVE! talks with hard of hearing mom Shanna Groves.

Julia Stepp (00:07):

Hi folks, Julia Stepp with Hearing Loss Live. For the beginning of the year we were lucky enough to sit down with Shanna Groves, better known as the Lipreading Mom. She is mother of three and she's going to share experiences with hearing loss, children, advocacy and all things Lipreading Mom. We hope you enjoy.

Julia Stepp (00:35):

I will start with introducing Shanna, better known as Lipreading Mom on social media. Is that correct? I've got that kind of correct?

Shanna Groves (00:44):

Yes.

Julia Stepp (00:44):

Okay. And then I will turn it over to Shanna to introduce herself and talk about advocacy, her books. What do you want to talk about Shanna?

Shanna Groves (00:59):

Well, all of the above. How about that? And I would love to talk about you as well, but you wanted an introduction. So my name is Shanna Groves, I am known on the internet as Lipreading Mom and the reason for that is because I have a progressive sensory neural bilateral hearing loss. That's a little tongue twister. But seriously, I do read lips and having three children ranging in age from 13 to 20 now I have to depend on all of those visual cues to be able to understand when they're talking to me.

Shanna Groves (01:37):

I've lived in the Kansas City area for 24 years. I grew up in Oklahoma where everyone has a little bit of a twang, so I'm constantly having to lip read different accents as well in my family. Let's see, besides lip reading I enjoy writing and so I have been blogging as the Lipreading Mom since 2011 and so you can find that at lipreadingmom.com. That developed in my living room one morning when my youngest son was about two and a half we were playing with his Thomas the Trains. I was feeling little bit isolated and just feeling some connection was needed with other people with hearing loss and so I started writing about my personal experiences as a parent with hearing loss. And so I promoted that on social media and got quite a good following and then still doing it.

Shanna Groves (02:42):

Write, post about advocacy, about parenting, accessibility. I am very passionate about captioning, I'm very passionate about any type of technology that will allow me to engage in communication and I'm just very passionate about encouraging people to not be afraid to disclose that they have a hearing loss. So I've done a number of different projects with that. So that is my introduction. I just thought maybe if you had any questions related to the Lip Reading Mom blog I could answer those, or I can just keep talking.

Julia Stepp (03:30):

Do you guys know what questions you want to ask? Are you good? I can cut the introduction real quick and it might be a little out of order, but.

Julia Stepp (03:41):

Michelle.

Michelle (03:45):

I thought my mute was on, but it's not. I identify with your being a mom who lip reads and I know when my kids got to be around what your kids' ages are now it was difficult. When my oldest son started middle school I couldn't keep up with all of the social things that he was involved in and actually hear what all the kids were saying and at that time I really didn't own my hearing loss the way I do now. So that was a real trying time and I felt like I could've done a much better job as a mom had I been more in tune with my hearing loss. So I'm just wondering because I had four kids who were teenagers for several months, and I'm just wondering, what are your challenges that you've had with your kids and how have you over come those? I'm sure you still have challenges you have a 13 year old and I think you said a 17 year old.

Shanna Groves (04:59):

Yes. I can elaborate on that, Michelle. To perfectly communicate what it is like to be a parent of teenagers/young adults but then adding the communication challenges with that. So all three of my children have typical hearing, I'm the only one in my family with a diagnosed hearing loss. My husband and I have been married for 25 years. He's very familiar with my hearing loss and how to advocate for me and communicate with me in any setting.

Shanna Groves (05:35):

I'll tell you, out of the three children my oldest child, my son, he will be 21 in January, my daughter is 17 a senior in high school, and then my youngest son he will be 14 at the end of this month. So I have a college student, a high school student and a middle school student in my home. Actually the college student he does live in an apartment near his campus, but he comes home regularly.

Shanna Groves (06:05):

I think some of the challenges with that is, for example, when we go out in public, you go to the gas station, you're paying for gas or you go anywhere. Right now the big thing with our pandemic are people wearing face masks, that obviously makes it very challenging for those of us who lip read to be able to engage in communication and I rely on my teenagers to advocate for me in those settings and one does an amazing job with that, my daughter. If I don't catch a question she'll repeat it to me in my better ear or she will answer for me and explain to the cashier that mom has hearing loss, no big deal. I'm not offended by that and she does a wonderful job of just keeping the conversation flowing.

Shanna Groves (07:02):

My oldest son sometimes needs a little nudge and reminder. I'll look at him and I'll say, "What did that person say?" And then he'll repeat for me. My 13 year old son is very shy and so I have to be the one to speak up for him and any time it's just the two of us going out in public I'm pins and needles because it's just I have to do all the listening and it's very hard. So I try to advocate for myself in those situations and just say, "I have a hearing loss, I lip read." And I usually point to the face. If they're wearing a face mask they either understand that I'm not understanding them or they'll just continue talking and I obviously can't tell someone to lower their face mask, but in some situations people will do that and it's been very effective for me.

Shanna Groves (07:59):

So let's see, other challenges with teenagers. Right now we're dealing with mental health. During this pandemic as well as just that age my daughter just a few days ago texted me while I was at work and said that a classmate in her senior class had taken his own life and that she wanted to go home. Well of course she would be coming to an empty home and I didn't feel comfortable with that so I called her school, I got her called out, I said she will be supervised. I went to my manager, I said I need to go home. So I spent the next day and a half with my daughter. She was out of school for a day and a half. We stayed in her room and we just talked and I have to face her, so she knows that. So when she starts crying and getting emotional mom's not able to understand what she's saying.

Shanna Groves (08:57):

And so I tried to just be very quiet and in the moment and not ask too many questions. First of all because I think she needed to be heard and secondly I wasn't sure if I was understanding everything she was saying and I didn't want to misquote what she was saying in that moment because she was talking to me, she was sharing with me her life. And so that's the really nitty gritty part of being a lip reading mom, is you got to be present during the great times and during the very low times like we've had this week.

Shanna Groves (09:34):

I think for all lip reading parents out there a word of advice that I would give is just teach your children how to be kind, how to be patient, because those skills I think will enable you as lip reading parent to teach them about advocacy and about that human compassion. And I'm very pleased to watch all three of my children develop into kind hearted, thoughtful, just compassionate human beings. They've learned a lot of it from having to advocate for their mom and if someones saying something to me that I don't understand they're very receptive to picking up on that mom did not hear and they're not ashamed and they don't shame me. And those are the skills that I've wanted them, and my husband and I both have tried to teach them is that hearing loss is not something to be embarrassed about. It's not something to hide. It's not something that you can even help. It's just something that I live with and they've done wonderful. This is all they've ever known since they were born is a lip reading mom.

Shanna Groves (11:00):

If that explains a little bit, Michelle, of what our life is like right now.

Michelle (11:05):

Thank you for that, Shanna. You know, something Shelly and I have talked about because we both lost our hearing early in life, mine was diagnosed in childhood, but I think having a parent with a disability, having a parent with hearing loss, makes your kids compassionate, kind, understanding, tolerant. So it sounds like that trend also happens in your family. I think it's a common thing. Thank you for that answer.

Shanna Groves (11:39):

You're very welcome, Michelle. I think what I'm most proud of in my life, my biggest accomplishments are the three wonderful young human beings that I've had the privilege of being parent to. And I say it's a privilege, it's a responsibility. We all know that are younger generation are experiencing some extraordinary pressure with the COVID pandemic and a lot of schools having to shift to remote or hybrid, or wearing face masks 24/7. Our children are living that, that's their reality right now.

Shanna Groves (12:21):

I have such compassion for my oldest son because the first two years of college he lived at home. He did his first year in person, the second year was the pandemic and he had to do everything remotely. So he needs that hands on in person learning to be able to thrive, and so the remote learning was very difficult. For me as a lip reading mom I was concerned that a lot of that technology that they broadcast their classes was on Zoom and that Zoom at that time did not offer any captioning. So for me to even be able to assist my son if he needed help with something, I would not know what was being presented in that Zoom. And I had to trust him to be able to own his learning and I think it was a huge maturity building experience for him. Now he's in his third year of college. He is at Kansas State University which is a very large college, it's two hours from our home. He has an apartment, he has two roommates.

Shanna Groves (13:44):

We do a lot of things now, our communication is by text message. He will call me, well FaceTime. On my phone I have Bluetooth that are connected to my hearing aids and so I'm able to engage mostly with conversations with him on the phone, but I find myself a lot having very short conversations and then handing the phone to my husband. It's heartbreaking for me, but it's so exhausting for me to hear on the phone, whereas if I was in person with my son we would talk for hours and he knows that. He knows that I'm not just cutting him off, that I really am... It's hard for me on the phone.

Shanna Groves (14:27):

So I've worn hearing aids, I've worn various sets of hearing aids for 18 years. My hearing loss was diagnosed 20 years ago actually, right after my oldest son, the almost 21 year old, was a newborn and I was in the hospital with him, he had just been delivered and my ears were ringing uncontrollably and would not stop. And I thought, this is not something I remember having prior to this delivery, what's going on?

Shanna Groves (15:00):

And I went home and I sat in a quiet house and I heard ringing and ringing and ringing in my ears and I'm like I don't know what this is and then someone said to me, "Oh, it's probably just ear wax buildup. You can go to the doctor, they'll clean your years, you'll be fine." So about a month into all of this I went to my family doctor, she looked at my ears, she said they're clear. She said we need to schedule an appointment with an ENT and an audiologist, we need to have a comprehensive exam done.

Shanna Groves (15:35):

So backtrack. I started having all these flashbacks to my childhood as a six year old girl in a kindergarten classroom where I had thrived in school, but at this one point in the classroom we have what were called listening labs where you sit at a table with your classmates and you wore headphones and the headphones would ask you questions that you were supposed to answer on a piece of paper, or you're supposed to do something on a piece of paper as a result of what the headphones asked you to do. So I wasn't following any of those auditory directions on the headphones. I went to my parents and I said, "Mom, dad, I can't hear on the headphones." And they said fine we'll get you tested with an audiologist. They had me tested and the audiologist said that I had normal hearing, but I just need to pay attention.

Shanna Groves (16:40):

And let's see, that was 1979. So that doctors assumption was what my parents used the next 15 years of my life, they thought I was just not paying attention and so listening was hard. Comments would be made, Shanna's book smart, but she doesn't have any common sense and it was all related to the fact that I needed to pay attention in conversations. Shanna zones out. Shanna's in la-la land.

Shelly (17:18):

I was that teenager. Yeah, I was that teenager. That happened to me.

Shanna Groves (17:24):

So, you can imagine then, Shelly, you can imagine that confidence bust that you have when a hearing professional gives your parents this assumption that she passed the test, she has normal hearing, just have her pay attention and get no services beyond that. From kindergarten through post college, no help, nothing. It was all on me to pay attention, so you can imagine, I'm sure you all can imagine that stress, that frustration, and that confusion that was on my shoulders. So I had what I look to now as a misdiagnosed hearing loss, or an undiagnosed hearing loss from the age of six until I was 27 years old. And I was with that family doctor, with a newborn son, advocating for myself and getting a diagnosis of progressive hearing loss and being told by the audiologist that I probably have lived with this hearing loss for a long time and had done so well.

Shanna Groves (19:00):

I mean, graduate college. I graduate the top of my class in high school, almost at the top of my class in college, graduated Cum Laude in college, went to work immediately, started my career. My first job out of college, again this is with an undiagnosed hearing loss, was as a phone sales person and it's the one job in my entire career that I struggled and it still was not evident to me that it was my hearing. It took me getting the constant ear ringing, which we know is tinnitus or tinnitus, for me to realize that no there's more going on here then just struggling and not being able to pay attention. So now you know.

Shanna Groves (20:00):

And I blogged about this some, but it took me a while to unpack the knowledge that my hearing loss could go undetected for so long without someone advocating for me. It took me advocating for myself as an adult to get the help I need. And so I use that as an incentive for if you're a parent or if you're advocating for a child, take things seriously. Get second opinions, do your research into different disabilities and don't just accept easy answers.

Michelle (20:49):

You know, I think that's a common thing. You are left to figure it out on your own and I know that's been mine and Shelly's experience. I think Shelly has a question. No.

Shelly (21:04):

No, just that I had hidden hearing loss and when I was 18 I got tested and was told that I had good hearing even though the tinnitus was screaming 24/7. I had good hearing and I wouldn't go back to an audiologist again until I was 23 years old and by then it was obvious.

Shanna Groves (21:38):

I think that you understand just that whole blow to your self-identity and your self-esteem to not know what was causing all these learning issues and all of these communication issues. When we think that it has something to do with our brains or our concentration or our ability to pay attention, and when those labels are given to us at a young age we internalize that. You know, before I was a lipreading mom I was known as a child who needed to pay attention. I was known as la-la land Shanna and those are labels that were very difficult for me to let go of myself.

Shanna Groves (22:36):

So the Lipreading Mom in a way is me owning my identity, my true identity as a person. That the two things that are extremely vital to my life, or important in my life, are being a mom and being a lipreader. When we talk about lipreading there's a lot of misconceptions that anyone with hearing loss or who is deaf can automatically understand what someone is saying just by watching their lips move and I repeatedly say to people, "No, statistically only 30%-40% of what you see on the speakers mouth can be interpreted just through that visual cue of lipreading and that the rest comes from auditory cues, body language cues, context of the conversation. Anything that you can give us, any additional pieces of the puzzle that the speaker can give us all a part of lip reading or what is more commonly known as speech reading because we're trying to interpret someone’s speech, not just through the lips but through multiple means of communication."

Shanna Groves (24:11):

I was approached in 2013 by a retirement community in Kansas City. They had found my Lipreading Mom blog and automatically assumed that I was a lipreading expert and asked me to come and teach some workshops for the residents on how to lipread. And at first I was talking to my husband, I said I'm not a lip reading expert, I don't know if anyone is. I know in the UK they do have a lipreader's network and it's more common in the UK, but here in the United States we don't have a network of lipreader's, so for me to be approached because of my blog to teach lipreading to other people was very interesting I thought. I thought, you know I went from the age of six to 27 of having to understand speech through whatever means necessary and I think that I acquired some of those skills that are needed for speech reading just because I was misdiagnosed.

Shanna Groves (25:29):

And so I said yes to that lipreading workshop teaching proposal and went and did a lot of research. I looked at some books that teach lip reading, I put together my own curriculum, materials, handouts, PowerPoint, put all of this together and so I have been teaching classes every year since 2013 in the Kansas City area, lipreading. And I'm not going to say that I'm any expert, but I was given an opportunity and there was a need and I felt like my life, my life experiences might benefit other people. If I just had the courage to say yes I could help. So that's my story of becoming a, I guess what you'd say, a lipreading teacher. Oh, one more thing.

Julia Stepp (26:36):

Sorry, I was just going to ask.

Shanna Groves (26:39):

Yeah.

Julia Stepp (26:40):

During the pandemic, did you take those lipreading classes online by chance or was it not? It was hard with senior centers here, so I don't know if that worked for Kansas or not. Just a side question, sorry.

Shanna Groves (26:58):

I did not teach any classes online. I was asked by our local library system in the suburb of Kansas City where I live, I was asked by the library system. I had been teaching for them for four years and they'd asked me if I wanted to continue. And I said well obviously with face masks we need to think outside the box here and so we said well what about clear face masks? Could we wear clear face masks? And I said we could try it, but months went by and our county was hit by more COVID and things were shutting down and face masks were being enforced all over the city and I said, "You know, I don't think this is the time. This is not the right time for me to be teaching."

Shanna Groves (27:57):

But this past September actually after about a year and a half of a hiatus I taught a lipreading class and there were four of us in the room, we spaced out. Chair wise, not spaced out in the brain, but we spaced our chairs out. And some wore the clear mask, somebody brought some clear face shields that we wore. But ultimately I'll be honest with you, most of us didn't wear anything and we were just far apart. And I think that it was interesting, I'll just put it that way. I've never felt more stress for a class and I don't know. I don't feel comfortable right now doing a lot of in person teaching, and also with online teaching there's so many variables to online teaching that need to come in to play to have a successful class and you have to have some type of accessibility there. And just staring at screen which at any minute as we know could freeze. You're talking and then somebody's screen just freezes and you can't lipread them. I don't want to be in the middle of a class and have that happen so I'm not comfortable teaching lipreading online at this time. We would have to have some really great technology to be able to pull that off and make it successful.

Shanna Groves (29:48):

That answer your question, Julia?

Julia Stepp (29:51):

Yes, thank you.

Julia Stepp (29:54):

We have a couple more minutes. Does anybody else have any questions? I do need to do an intro real quick before we close up, but any other questions, comments?

Julia Stepp (30:11):

Shanna.

Shanna Groves (30:12):

This is not a question, but I think something that also we'll mention as a lipreading mom, is I process a lot of the grief of my diagnosis of being able to truly learn to live with it and accept it through writing, you know the blog. But then I'd started putting together stories from my blog and was able to author two books. The first book actually came out before my blog started. It's called Lipreader, interestingly enough, and it is a work of fiction but it is inspired by my relatives on my dads side who have genetic deafness. So my family history, long story short, is that we have several generations of deafness on my paternal side. My dad had normal hearing, two of his siblings were hard of hearing, and those two siblings had children who were hard of hearing. And so I have an aunt and an uncle who are hard of hearing, I have two cousins who are hard of hearing, and then there's me.

Shanna Groves (31:38):

I feel a connection there with my family that I probably never would have had, had I not gotten properly diagnosed, that we all have this family legacy of hearing loss and different approaches to how we have dealt with our hearing loss. One of my cousins went to a residential school for the deaf, he married a woman who is deaf and blind. They have a child together who is hard of hearing, who also went to the same residential school for the deaf. The other cousin from the other family member was hard of hearing, he wore hearing aids, he was mainstreamed in school. A few years ago he received cochlear implants and has been doing very well. His speech has actually... He was very difficult to understand speech wise until he received that implant. And he received some auditory therapy, training, to be able to improve what he hears and how he processes his own voice and how he articulates. So he's doing very well.

Shanna Groves (32:59):

And then there's me. My hearing loss is not as significant as my two cousins yet, but because it's progressive it definitely could become profound like theirs, that I've managed to just be able to use hearing aids not a cochlear implant or anything yet. But that is something that I will have an open mind to that if I become a candidate in the future.

Shanna Groves (33:34):

So that's it.

Julia Stepp (33:37):

And you have two books out, correct? It's two books that are published?

Shanna Groves (33:42):

Yes. My second book is Confessions of a Lipreading Mom, and that book came out in 2013. And that book is inspired by the Lipreading Mom blog. It is stories from the moment I was officially diagnosed with hearing loss at the age of 27 all the way to the birth of my youngest child in 2007 and all of the events that happened in between having all my three children, all the family life circumstances that happened during that time, all of the processing that I had to go through of learning to live with hearing loss as a very young parent. And so it's a lot of trial and error, there's some humor in it, there's some really sad parts of the book where I'm dealing with loss of family members and coping with grieving while being a parent, while having a hearing loss and my brain being in a fog and not able to clearly focus on any communication. I think that when people pick up the book they think it's going to be a how to manual on how to lipread, but it is so much more. It is my life and it was difficult to write, it's difficult for me to read the book.

Shanna Groves (35:13):

I would definitely say that my preference for writing is probably fiction and not have to write so many hard truths about myself in a book. So if I ever write it again it will most likely be fiction.

Julia Stepp (35:32):

Thank you. I'm going to go ahead and close it out. Any more questions, comments? If you haven't found lipreadingmom.com please go to it. Enjoy her blogs, I know I do. There's a lot of information about advocacy, she writes for her local paper in Kansas as well on that. And you know she's really dear to our heard because you've heard us talk about the same struggles and we're all here to make sure that those struggles don't happen for a future person. Again, all about helping you help yourself, right? So we hope you learned a little bit on advocacy, self advocacy. Learn more on Shanna Groves at lipreadingmom.com.

Julia Stepp (36:23):

We were excited to have her today, thank you for joining us. We look forward to this podcast in January when it comes out. I'm going to leave off what's happening next because we might have some changes coming up and until we know I don't want to introduce next weeks' blog and podcast.

Julia Stepp (36:44):

So thank you for joining us, share us on your... Let me try again. Share us on your social media. It's still early here. Join us on your social media, share us on your social media, subscribe to our YouTube page. You can find us on your favorite podcast station for those family members with hearing, and a transcripts always available at Buzzsprout. Thanks for joining.

Shanna Groves (37:20):

Thank yo for having me.

Julia Stepp (37:22):

Bye.

Julia Stepp (37:22):

On Hearing Loss LIVE! next week when we sit down with Cristina Duarte of InnoCaption.