Hilary describes it perfectly that everyone's body is different. There are some disabilities that are visible and some that are hidden. In this episode, Hilary shares her story of resilience of her daughter who experiences hearing loss. Through the ups and the downs, learn how her daughter and family have grown together to navigate this journey of hearing loss together.
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Jen: Welcome to the Parents Place podcast with Hillary and Jen. Hi, we are so glad to have you here today, and you may notice that it's Jen starting this out instead of Hillary. We're going to have a great podcast today. But before we get into that, I just want to apologize if you can hear the hum of our air conditioner, our podcast room is right next to the mechanics of the air conditioner. We had it turned off earlier, but the poor staff up there were dying of heat.
Hilary: We're having a rebellion over in this building. So, we decided for the sake of the company to keep it on.
Jen: So, apologize if you can hear that. But today I am lucky and excited to hear about our podcast is going to be Hillary talking to us. We are going to hear her story of resilience and I'll let her introduce herself if she wants to say, give us more information about herself and just tell us we'll start out with what her story is.
Hilary: I don’t like being in the hot seat here and the reason why I am the interviewer, not the interviewee. It’s different!
Jen: But I think it's such it’s such a great story!
Hilary: All right. So, if you are an active listener on our podcast, you know that I talk about my kids. I have four kids, myself, a 12 year old and nine year old, a seven year old and a four year old baby. I've talked about my daughter, my older daughter, my nine year old. Her name is Layla, and she is my example. I wouldn't call myself resilient, but she's my example of resiliency, and I'm just hanging on to her coattails and hoping that I can be the same way. But a little bit about her story. Here at our school district, which I'm assuming is similar to a lot of other school districts. But in our school district, they have a yearly vision screening that they do and they do yearly hearing screenings as well, too. And so, you send your kids to school and they go through this vision screening, and if things are OK, then you don't ever hear anything back. And if things are not OK, then you get this wonderful letter in the mail saying…
Jen: A letter in the mail?
Hilary: Yes. Or a little note sent home saying that you probably need to follow up
Jen: That would be a better conversation in person.
Hilary: Yes. So, you get the letter. And so anyway, after the hearing test that was conducted at the school, I got the letter that was sent home to me. And basically, the letter just says you might want to follow up with, you know, an ENT to get kind of a full test because obviously the test they can take at school is not a formal hearing exam. And I'll be honest here with my thoughts when I got the letter. And this is not to discredit our school system by any means because you guys know that I love, I love our school system. But I got the letter and I read it and I thought, this is a kindergartner taking a hearing test. She was probably distracted. She was probably paying more attention to the kids in line than she was her own self. And I really, truly thought this is nothing but part of the process is that you do the follow up. So, we did. We contacted one of our one of our local ENT’s here. Anyway, long story short ended up doing not one, but two separate visits with two separate ENT’s. We got two different opinions. Found out through that process that she did have hearing loss and her diagnosis is a little bit unique because it new a little bit newer to the hearing community. But she has a diagnosis where she has progressive hearing loss. And they don't necessarily know. Tell how quickly she will lose her hearing, it might happen in a few years, it might happen when she's 60. Who knows? And there's some factors that might play a role in that, and I can talk about that in a second, but it is progressive. And so, we meet with our ENT’s and our audiologist every three to six months and get her retested to see how she's doing. And then every appointment is scary and daunting and overwhelming because you know that you might hear bad news and that's going to require new steps moving forward. But it was honestly, it was a shock to all of us. It was a shock to myself and my husband. It was a shock to her teacher because she has always and still is a very shy child. But she's also a very observant child. And so, it's been interesting, interesting for us, to now that we know this about her, to look at her and to notice somethings.
She's always been the child that that watches everybody else around her. And then does what everybody else does. And so, I think that's why it wasn't identified by her teachers quickly because she's an observer. So if all the kids get up and she gets up too. And when all the kids move to the rug, then she would move to the rug with them. And because she's so shy, she's not the child. That's like, wait a second, I didn't hear what you said. And again, and so we never really knew because she was so quiet. Looking back now, my husband and I have been able to identify some certain things where we're like, Oh yeah, that makes sense why she didn't do this or do that. And we've had to hit ourselves on the head a few times. Or I’m like “Crap, I was not very nice with that situation” Because it's really easy for a parent to be like, come on, you've got to listen better. Why are you following my directions? And there's times where I think we probably sent that to her. The reality was that she wasn't misbehaving to misbehave, but she was misbehaving because she didn't hear what we were saying. So yes, we had to apologize a number of times for the ways we have acted in the past and are doing better now. But that was, she's now in fourth grade. So, you know, we're working on three years. So, she wears hearing aids now at this point. We made the choice. To have her wear hearing aids when her hearing gets worse, we will probably move to a cochlear implant for her. And that's the route we've decided to take. We know that not everybody believes that route is the right route, and there's a lot of controversy among the deaf community as to what the best thing is to do. So, I know that she'll probably get a lot of backlash in her life, and I know we'll probably get some backlash because of that too. But. We decided to make that choice. And we feel like it's the best choice for her given the situation. And honestly, as we live day to day with her and we've kind of learned that that's how things are going to have to go with her when she first got that diagnosis. Her ENT, so with her progressive loss, if she were to get a hit to the head, it could potentially she could lose hearing t because of that. And so are you at that first initial visit proceeded to give us a big, long list of things that she probably shouldn't be doing that would put her at risk. A lot of those activities were activities that she had already are involved in and loves, and my husband and I had to make. We had a lot of hard conversations together about how do we find this balance between shielding her for her own protection and allowing her to live a long, happy life and given the fact that she's already an introvert and the personality that she has, I was fearful that if I told her. If you do X, Y and Z, then you could potentially lose their hearing, that would be that would be such a hindrance to her because I feel like she would have constantly lived in fear and do that. I shouldn't do that. I'm not allowed to do that. Honestly, I want her to live a full life. I want her to be able to ride a bike with her friends and jump on the tramp and attend PE and play in a soccer league if she wants to. And obviously, there's some activities that we've shied away from or that will continue to shy away from. But for the most part, if it's something that she wants to do, we allow her to do it. Because in our head, the reality is that anything could happen to any of us at any point. I mean, she could be walking on the sidewalk and slip on some ice and hit her head. Any of us have that situation, and so we made the decision that we don't want her to live in a plastic bubble. We want her to have experiences and so that's what we do is that we take each step, day to day and we know that we're going to have to make some adjustments and. I'll be honest, it was it was heartbreaking to hear that at some point in my child's life that she may not be able to hear my voice without using, you know, some form of technology that's still hard for me to say and that for me to hear. But through this process, we've talked to a lot of people that have given us a lot of hope. And so we know that there's advances in technology and there's things that she has the option to use throughout her lifetime that are going to allow her to live.
Jen: So will the cochlear implant allow her to hear for the rest of her life?
Hilary: So, if she's using yes, if we choose to go the route of a cochlear implant and with that implant, she'll be able to be able to. That was one decision that we had to make early on was some people choose to take, you know, the route of the of a learning sign language. And for us, I mean, we respect those individuals that choose to do so. But we actually asked her audiologist and he said to us, you know, it'd be one thing if she was born this way. And from a very young age as an infant, she couldn't hear it would be one thing if we could start that process of learning sign language into the very beginning. But he mentioned that she knows so far at this point, she's had six years of her life. And for those six years, she's been learning to communicate verbally. And so, for you to take that away and to attempt to do something completely different than what she used to be might cause more problems than it, that it could help. And so, he made the suggestion that for us, since she has already developed those language skills and they're strong, but it's not going to hurt to learn, sign and we'll work on that together as a family. And who knows, maybe one day as a young adult, she's going to take out her cochlear implant and say, I don't want anything to do with this and rely solely on signs at that point. And if that's the case, that'll be fantastic for her. But at this point, given her situation, I think this is the best route to take.
Jen: So, during this process, how much have you like shared with her? How much is she in this decision making?
Hilary: That, that's the hard thing is that there are some very strong opinions out there in the deaf community that that it should be the child's choice as to whether they are implanted or not implanted as to whether they use an aid or not. And it's hard because I understand that they are their own person, and they have an opinion, and they have a right to speak up. Obviously, I advocate that that's what I do as a job. But I also recognize that she's six. She's six with six with limited knowledge and a limited capacity on how to make those big decisions. You know, I also feel like as a parent, my job is to research and learn and help to make that decision for her, essentially. It's been interesting because one of the things that I attempted to do through this process was to connect myself with resources because I'll be honest. Besides grandparents who have slowly lost their hearing, which I think is very normal, there wasn't anybody on my side of the family or on my husband's side that had hearing loss at a young age, and so I really didn't know anybody. So, I attempted to connect with lots of Facebook groups and social media groups and are some that are very welcoming, and then there's others that are very polarized, and there's a lot of people that see one right way to do things and a wrong way to do things and. And you'd be on the wrong side, maybe on the wrong side, but I try to make the best decision for my child. And for her, one tough decision that we had to make was how much to tell her about her own diagnosis. So, she knows that she needs to be more careful than her siblings. She knows that when she's on a bike, when she's skiing, even when we're sledding together as a family, she needs to wear helmets because a helmet is the best way to protect her head. She knows that her hearing will fluctuate. She doesn't necessarily know that she's going to lose her hearing entirely, and we decided not to tell her that at this point, but we know that that's a conversation that we will have with her at some point in her life. But we figured that we would know, and that conversation needs to happen, and at this point, it doesn't need to happen yet. And you know, she has asked questions to ask one of the questions that she asked early on, she was probably only six or seven at this point. And so, she had been wearing hearing aids for a few months at this point. And she turned to me one day out of the blue and said “Am I always going to have to wear these Mom?”. And it was interesting because you could see in her head her processing. Is this going to fix things? Is just like a temporary Band-Aid type scenario. And so, I had to explain to her, sweetie, you're going to throughout your life, you're going to use something to help you here. It might be hearing aids. It might be a different device. But yes, this isn't something like a cut where it will get better over time. You're going to have to use something. And so, we're helping her to understand that this is just a part of her body and it's a part of her life and. And that's OK, because. And, you know, another conversation that we've had with her, because obviously it comes with its own set of hardships. But one thing that we've talked about with her is how everybody's body is different. And you know, I attempted early on to point out different things. You know, I wear glasses that helps me so that I can see. Some people are in wheelchairs that helps them to move. You've probably noticed that some people may not have all of their fingers or may not have a hand or a leg, or, you know, pointing out different physical features and bodies and not necessarily saying that those things are bad and just how bodies. Our bodies are all different. And I also and I also tried to explain to her that sometimes it's hard because yours is something you can visually see. But there is also a lot of people that have things within their bodies. We can't see with our eyes, but there are some people that are maybe dealing with heart problems or stomach problems. We don't know that we don't see that or some people that have a hard time where they're constantly sad, you know, related to mental health issues. And so, I said, everybody has something. Nobody has a perfect by any means that, but yours is unique because people can see that you have something in your ears and that's OK.
Jen: So how have your other kids reacted to this whole situation?
Hilary: My daughter, who was four-ish at the time, it was really cute because. She was actually a little bit jealous of her because, you know, with something like this, I think you get a little bit of added attention. She has a lot of appointments; she has a lot of one-on-one time between her and me. And I remember my 4-year-old saying, “Why don’t I get to have hearing aids like her?” I'm like, Sweetie you probably won’t, you know so and so it’s, you know, it's been a learning process for all of us. We've sat down with all of our kids together as a group. But also, I sat down with them individually and talked to them about how, you know, when we talk to her, we might need to speak up. One thing that we definitely stress with our family is that if she asks us to repeat something that we repeat it and we repeat it without being frustrated, because that's really hard to do sometimes as siblings. If my son is saying something to my daughter and she's like, what? And it's easy for him to be like, oh, I don't want to tell you again. So, we've had to kind of train our kids in this process. She didn't hear it. It doesn't mean that she's trying to be mean or that she's not paying attention. She just may not be able to hear things like you hear things. And so, we have a policy in our house that it's always OK to repeat things again. There are certain situations within our family that we pay particular attention to being in the car. Driving in the car is kind of a hard it's a hard environment for her to be in because of my husband and I are driving and she's in the backseat. It's hard for her to hear things when she's behind us. And so, a lot of times will have to make sure that we, the passenger, turns their head to talk to her directly. Or we might tell our son, who will then tell her if she's in the back seat. I pulled my oldest son aside and explained to her that, and this was in those first initial few weeks and months. I was, I'll be honest, I was really nervous as to how kids would treat her, and if this was something that she was going to be singled out for or made fun of. And so I pulled my oldest son aside and I said, You know, if you ever notice, if you guys are playing together, if you're in the neighborhood together, have you ever notice the kids are saying things or doing things ? You know, I don't want to add a lot of pressure to you as an older brother, but recognize that there might be times when you might need to speak up and you might need to provide some education and you might need to remove her from a situation that seems like something that she shouldn't be in. And so, you know, just this idea of having older siblings help each other out of each other's backs. And honestly. We have had I have been really surprised at how, very little, she's had when it's come to like negative backlash. For the most part, there's kids and we've had to help her to understand this. Kids are going to ask questions. Those questions aren't necessarily mean. If somebody says, Hey, what's in your ear, they're not saying that to be mean or malicious by any means. It's just a true question because for a lot of kids, the first time they've seen that. And so those first few conversations that she had with kids, we have to really do a lot of roles play in helping her to learn how to respond to those questions, so she didn't take offense to them. But in all honesty, most of what she's gone through has been very positive. I mean, it's an imperfect world. There is always going to be a few people that say stupid things. you know, you can never get rid of that. But for the most part, kids are just, they want to know. They want to know. And it's cute. She had, this was probably still when she was in first grade because one of the things that kids will do is they'll look at them and then they'll speak up and talk very closely to her. And so she had a little boy did that in her class, kind of almost yell at her and she turned to him with this look, and she said, I can hear you. That's why I'm wearing these. And so, I think as a whole, we can do better in educating each other, you know, on how best to help one another. So, the process that she's going to have, probably, I mean, that's never going to go away. It's something that she will continue to do throughout her lifetime and advocating on behalf of herself in different settings as to what's the best thing for me to do and how can others around me help me to help them.
Jen: So. Let me ask, not last question, But how has this affected you and your husband? What impact has this happened to you?
Hilary: You know, we have had to it’s. It's interesting because. Like we've said on this podcast. And every parent, every child is different, and you parent, according to that child and I look at my four kids and how I parent them, and we parent her differently than we do some of our other kids and I think that's OK. I think it out of necessity. That's what we have to do. And I'll be honest, there are times where it's really hard, and both me and my husband have had to learn a lot of patience. Particularly with my husband, you know, it's not only given the fact that she has a disability, but she's also a girl, it's easier for him to relate to the boys. They have a lot of similarities. Talk the same way, and so he's kind of had to had to adjust his parenting style. To best meet her needs. She is very sensitive and so, it's been tricky for her, but it's been interesting. I I've heard this before, but I've always heard that, you know, when you have a couple go through a trial. That you would never want to relive that, like, don't get me wrong, I want to do this every day. But having gone through this situation and still going through it, obviously I feel like we are a better couple now than what we were before because I think it's allowed us to grow up. It's allowed us to have to rely on each other and to have these hard conversations that we wouldn't have had that have not been for this experience.
And so, I feel like we are a stronger companionship because we have had to work together and and there's times where I will go to him and I will cry because it's hard and he knows how I'm feeling, and it's really nice to have somebody that knows. Because there's a lot of people that don't know how you're feeling. So, it's not always be a comfort to have somebody that I'm like this is hard. And I don't necessarily want to speak out my emotions on her. So, you know, I don't want to put that on her, but I can spew out my emotions on you. Yeah, but you know what? She always, you know, I look at her and I look at what she's done already, and I look at what she will do. And I really, truly like I always tell people. The I am just I'm so excited, I am so excited to be on this journey with her because I can tell she's going to do amazing things. And it was and I just I get to be a passenger to that, and you see, I get to see her excel and I get to see her educate and I get to see it's I find great joy in seeing all of my kids succeed and learn new things. But there's just something extra with her because I know how hard she has to work to learn those things. And there is such a sense of accomplishment to see her do hard things. And it's been interesting. In part of this process, we have her go to counseling just to help her understand her emotions and kind of help her through that initial situation and. And our therapist, her therapist, she made a really good point that I won't ever forget, and it was probably more so directed towards me than I was towards her. But she said. You know, we're going to do everything we can to give her the skills that she needs in order to succeed. But you've also got to understand that her definition of success is going to look different than any of your other kids. And it's true. You know, and I think so often as parents, we have this preconceived idea of what our kids are going to be and how they're going to turn out and what they're going to like and dislike and what their hobbies and talents are going to be. And we have no idea. And in the end, they're going to make those choices. And I think that was a really powerful thing for me to understand. And here was she’s going to succeed. Will she take the same path as her sister will? Definitely not. But she's still going to have successes in her life, and we're going to applaud her for all the way.
Jen: Well, you kind of asked answered the question I was going to ask, is this how you guys are doing now? And it sounds like you guys are doing great, and you've had a lot of learning to go through and growth, but.
Hilary: Yeah, it’s been, we'll continue to go through this journey and I’ll say this is kind of close because this was a pivotal point in kind of my mindset towards this. So, I am lucky that I found a close friend within my neighborhood who has a son who has hearing loss as well. And that would be one of the suggestions that I would offer is find that community. But I remember when I told her about the diagnosis, and I was. And I actually, divine inspiration, she actually came into my life only six months before Layla was diagnosed, and so I remember first telling her about Layla and what happened. And though here's what she said to me, she said to me. That is so exciting, and I was like, what… come again? I have just poured my heart out to you about how my child has hearing loss and you're telling me this is great. I didn't say that to her, but in my head, that's what I was thinking. But this is what she said. That is so exciting. This is going to be such a remarkable journey for you to be able to see her thrive, be able to experience her hearing, things that she has never been able to hear before. She's going to be, she said. It's going to be such a fun journey for your family. And I remember when she first had her aides put in, she came home, she went to the bathroom. And the door was closed, obviously, so I hear her go to the bathroom and I hear her flush and then I hear her say, woah, because who knows what she was able to hear before. And it's hard to know what she had been able to hear before versus what she can hear now. But the flush of a toilet was big! It was different to her. And so, we've had a little moment. She was she was doing an art project with her sister. She was cutting some paper and she turned to me. She said, I know that you can hear paper being cut. So, all of these little things that we hear, we do that we don't even it doesn't even connect with us. So when this little mom said, this is so exciting, we're going to be able to see her have these experiences and you're going to be able to see her hear things that she's never heard before and do things that she's never been able to do before. It completely changed my mindset that I can wallow in this in this and see this as a hardship and have in this self-pity that I have, or I can take this experience and say, we're going to learn a lot from it. Will it be hard? Of course, it will be. But you know what? It's going to be amazing as well, too.
Jen: Well, Hilary, I appreciate you sharing your story of resilience. I wish everyone was here in the room with me so you could see Hilary and see the smile that she has on her face when she talks about her daughter and just this hard thing. I mean, like, she said, we could wallow in it, or we can move on and embrace it in a good way. And I think that’s good advice for us to apply to any hard thing that we do because we all have hard things that we have to do. So, I appreciate you coming in and sharing and being open as you probably have figured out. I just love Hilary. Her family is amazing and she's an amazing mother, so I appreciate her example for all of us. So, remember to be kind to yourself and we will see you next week.
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