Mighty Mila: Children’s Book Series Helping Redefine Hearing Loss Narratives

Welcome to this Week in Hearing. I’m Shari Eberts, co author of Hear & Beyond Lives Skillfully with Hearing Loss. And I’ll be your host for this episode. Today we are talking with Katie Petruzziello. I met Katie at the Center for Hearing and Communication Awards ceremony back in early May, where she was being recognized for her terrific children’s book, Mighty Mila. Unlike most hearing loss books for children, Mighty Mila is not about hearing loss, even though the main character, who’s based on her daughter, has two cochlear implants. Mila’s adventures in the book, and probably in real life too, show all the ways children can play and grow, hearing loss or not. And I’m sure it has helped many, many children see themselves represented in a fun story that everyone can relate to. So thank you, Katie, for being here to talk about your mission and to share what you’ve learned with your community. Thank you so much for having me. This is such a pleasure, and it’s so nice seeing you again and getting a chance to chat with you further. Absolutely. So tell us a little bit about your family’s hearing loss journey and of course, the inspiration for the book, Mila. Yeah, so Mila is currently so I have three children. Mila is my middle child. She had hearing loss identified when she was one years old, and at that point in time, it was mild sloping to moderate sensorineural hearing loss. She got hearing aids. She was doing great. We got her all services that she needed, speech, teacher of the deaf, and she was doing wonderfully with it. We didn’t have hearing loss in the family, so it was a big surprise to all of us. But we kind of just got, like, tactical with it, figured out what she needed, got a really good support network, which is so important of doctors and therapists, people that know way more than we do and helped kind of guide us along the way and still continue to guide us. And so Mila was doing great. She’s still doing great, but when she was around two and a half years old, her hearing started dropping and it went from mild to moderate to severe and then profound hearing loss over about a six month period. And this was right before the pandemic, and we were able to get her cochlear. We chose for her to get cochlear implants at that time in February of 2020. She got activated right before everything shut down, and she basically learned how to hear electronically with the cochlear implants really quickly. She did so well with it that within a week or so, or even a few days of activation, she was able to understand what we were saying, start talking, conversing with us, and got right back up to track with her therapist through virtual therapy at the time, through a Zoom, given that it was a pandemic. And she’s done really well. She continues to get really good services in school, and we have our support network, who we consider our family, our extended family, that helps us figure it all out as we go. And new addition is within a couple of weeks ago actually identify that our youngest, Sophia, who’s about to turn 4 now, has mild hearing loss. So she got hearing aids a couple of weeks ago. She’s keeping them in. She’s asking for them in the morning. She’s doing well, and we’re working to try to get her services now for the upcoming school year. So there’s been a lot change recently, but we feel much better equipped this time around, having been there through it with Mila and just trying to figure out what right for Sophia also. So I’m sure Mila is such a good role model for Sophia right and the book is as well. So talk a little bit about the book and what you’re hoping to accomplish with it. Yes. So the book came about because shortly after Mila got her cochlear implants, as we were reading stories at bedtime one night, Mila was flipping through one of her storybooks and got upset that none of the characters had cochlear implants. And when she asked why none of them had cochlear implants like she does, I pointed her to the collection of books that we did have on the shelf that had characters with hearing aids, with different hearing devices, cochlear implants that I had bought along the way. And she made an interesting point that really kind of had a light bulb go off in my head. She said, Well, I don’t want to read a book about people going to the doctor. Where are kids in my fun stories with cochlear implants? And it dawned on me that really all the books that we had, or 95% of the books that we had that had characters with cochlear implants in them, they were all about the medical journey, which was so important. We had them because they helped us explain to her what was going to happen with getting cochlear implants and helped her relate in that way. But she had kind of like, been there, done then she was ready to move on. And yes, she knows she needs to go to the speech therapist and she needs to go to the audiologist and get mappings and all that, but she wanted to just see herself in portrayed as a typical child doing fun things and going on adventures. So it lit a fire under me at that point, and I was like, well, you know, you do deserve to have books like that. Kids that are definitely hard of hearing do deserve to have that, and I’m going to write one. If it’s not out there, I’m going to write one. And there are others out there, but there’s not a lot. And so it’s just important. My mission, really, is kind of twofold. It’s one, first of all, to provide representation and empowerment to Deaf and hard of hearing children so that they can see themselves in a children’s book that’s showing them as a fun loving child that’s going on an adventure, that’s doing all the same things that their peers, whether they’re deaf – hard of hearing peers or typical peers, what they’re doing. And then secondly, to get this book into the hands of children that have never met anybody with hearing loss. So that they can understand and raise their awareness so that they can understand in in a safe environment within their house where they feel like they can ask questions of their parents or in a school where they can be encouraged, ask questions about this, understand what it is, understand what a focal implant is or a hearing aid is. So when they see kids in real life out in the playground, they know a little bit more about it, and so that they can understand more. And then also just also so that they can see that people who are different from them, whether it’s because they’re deaf or hard of hearing or whether it’s because they’re in a wheelchair or whether it’s because of whatever. Many reasons that we’re all different, that it doesn’t mean that you can’t do a lot of the same things and that we should all be celebrating our differences, whatever they are, because we’re all different from each other in various ways. And you should celebrate the things that make you unique and help to encourage others to celebrate the things that make them unique. So it’s kind of twofold help kids that are deaf and hard of hearing, but then also to help raise awareness outside of the hearing loss community. I love that so much because there’s a lot of stigma that goes around with hearing loss. And so if you see yourself, or if you see your typical hearing kid, but you see a book and this person has hearing loss, but they’re out there doing fun and exciting adventures, it just breaks down that stigma. It just makes us understand that we’re all different, but we’re also all the same, and we all have a lot of similarities. I love what you’re doing with that. Thank you. Yeah, that’s exactly it. You said it so well. And so what’s been the reaction so far? Oh, it’s been wonderful. It’s been really good. This is my passion project that I do on the side outside of the normal work day in my corporate job during the day, and the kids and the sports and activities and all that. And then at nighttime is where I spend time on the book. And I wish I can spend tons of time on it, but in the time that I do spend on, it’s just very fulfilling. And the reaction has been wonderful. I mean, I’ve been grateful enough to have several- five different Gold Awards in different book competitions, including Readers’ favorites IBPA, Benjamin Franklin Award, Hoffer, and others obviously being honored by the Center for Hearing Communication. And it’s been great. And the notes that I get in the messages on Instagram or on Facebook, or even my email from parents, from educators. I even got a message from a Cochlear Americas research scientist has said the book helped her explain to her child the importance of the work that she does, right? Or parent coming and saying, this book was so helpful in helping my older child who’s typical hearing, understand what their sister is going through, who was just born with hearing loss and little things like that that I didn’t necessarily plan for. But it’s just these wonderful things. Someone just reached out to me the other day and said that her daughter is obsessed with the book and they just had a new baby and they decided to name the new baby Sophia because the daughter chose it after one of the characters in the things like that. So it makes it all the hours and the late night worthwhile to know that it is making the difference. And I’m hoping that it will. That’s terrific to hear. I mean, I enjoyed reading it myself. There are others too, as well. So you’re a mom to both deaf and typical hearing children. Can you talk a little bit? You balance the communication so that you can meet everybody’s needs. That must be very challenging. It is tricky and it’s something we’re always working on you know. It’s something you always have to keep in the forefront of your mind. So my son, who’s eight, he’s typical, he has typical hearing. Mila’s deaf with cochlear implants. Sophia, as of recently, is hard of hearing with hearing aids. So we’re still, of course, but like, it’s always things that we have to keep in mind. We just moved into a new house and one of the things is we have to get a lot of rugs, we have to get things up on the walls, we have to try to help the acoustic environment of the house be as conducive as possible. We got echoes in each of the bedrooms so that we can communicate with them that way, instead of yelling up the stairs. It’s things like that, like in our home environment. And then also, where do we bring the mini mic out to a restaurant. That’s going to be loud and thinking about that. And with Luca too, my son, his typical hearing, a lot of it too, is he used to get very involved in Mila’s therapy sessions and helping sit down. Back when our teacher ofthe deaf, came to the house, he would sit down, he would help also, and he would participate. And he understands the importance of the need for a book like Mighty Mila, even though sometimes I get a little grief for why isnt there a book about him? you know, it’s just trying to figure all that out as we go. And we’re starting to, as a family, starting to learn some sign language. I want that as an additional communication mode for them, especially when they have their cochlear implants or hearing aids off, and just to open up their ability to communicate with others in the deaf community that may or may not have hearing devices. So we’re starting down that path as well, just to. Give them, hopefully all the tools they need, as much as we can try to figure out. It’s hard, right? We’re hearing parents, so we’re doing our best to understand from others that are deaf and hard of hearing that are adults, how we should be thinking about things and taking that information and layering on to how we know our children and what they wanted, what they’re accepted to. Like Mila. In the past, I wanted to do sign language, she didn’t want to do it. Now she’s interested in. So I’m like, great, let’s go for it. So just kind of following their lead a little bit. And they are very comfortable telling me when they can’t hear me say, mom, say it again, say it again, say it again. So they’re always asking if we need to repeat it. And the same thing, like, no, Mumbling, don’t cover your mouth, don’t ever say never mind if I’ll say it 15 times, if you need me to say it 15 times to hear it, even if it’s a silly comment. And that’s one of the things we encourage Luca. Like, he may say something under his breath that maybe he shouldn’t have said and she’ll say, what? Now that you have to repeat that. Even though you’re going to get in trouble, you have to repeat it because she has a right to know what you said. So it’s things like that- good for you. And I’m sure it’s a major work in progress, as is everything with children and life. So I’m sure you guys are doing a terrific job with it. Thanks. We’re trying. We’re doing the best we can. I was just trying to figure out how do we continue to support them the best that we can and how they need to be supported. I know there’s going to be probably other parents talk listening to this podcast. Maybe you can talk a little bit about some of your most challenging moments and how you may have overcome them as a way to show parents that there is sort of light at the end of the tunnel if they feel a little bit challenged at the moment. Yeah, I think digesting everything up front because we didn’t expect any of them to have hearing loss because we didn’t have it in the family. It’s a lot to digest. So I think that for any parents that are new on this journey, give yourself the grace to have all the feelings, but also know that your child will be okay and know that you’ll be okay and that everything really will just become normal, right? Like it’s just going to become normal life, and it’s just these extra things that you need to think about, but you’re always going to have extra things you need to think about. With any child, they all have their own specific needs. This just happens to be about hearing related and communication related. So I would say just do all the research, support surround yourself by the right resources and support network. Just going through challenges. For example, with Sophia and her hearing loss, she was sick and she had. conductive related loss for a while. And then we got her tubes in her ears and the doctor we had been going to at the time told us after she got the tubes, they retested her and said she’s got perfect hearing at ten decibels. And we said ten decibels across the audiogram. That doesn’t make sense to us. Like, she’s not hearing. And the doctor said, Well, I don’t know what to make of that. The data is saying that she can hear. I said, she’s not she doesn’t hear us speak low. She doesn’t hear us when we whisper. She doesn’t turn when we come into the room and we asked to retest, they retested and they found a little bit, we went somewhere else. And so I think a lot of it is going with your gut, like, you know your kids the best and so trying to be as in tune as possible to their needs. And if you’re not hearing, doctors are experts, they’re great, but you also an expert on your child too. So I think you have to find the right team. And if you feel like you are with a professional that maybe you don’t feel like you can ask questions or you’re not sure you really are comfortable with their advice, it’s okay to go elsewhere to find the right support network. And once you find them, it makes your life a lot easier because then you know, you can rely on them for things that you don’t know about because you can’t know everything. I don’t know everything. I try to figure out as much as I can, but you have to have the experts in the space guiding you through it. That’s good advice. Thank you. So tell me a little bit more about the movement. So how can parents and educators use this book to raise awareness and representation for kids with hearing loss and sort of what do you have coming down the pike? Yeah, so one of the great ways so, like I said, I wanted to raise aware deaf representation, raise awareness outside the hearing loss community. So one of the things that I did alongside with Mila’s, teacher of the Deaf, is we created an activity pack that goes along with the book, and it helps to build vocabulary, listening skills, auditory training, all this great stuff that’s exceptionally powerful for kids that have hearing loss or deaf or hard of hearing. But it’s also really fun and really good for all kids because what, five to three to eight year old doesn’t need to be working on their vocabulary and their listening skill? I mean, everybody does. And so I have that up for free on my website. I’ve had lots of people all over the time say, why don’t you put it on teacher pay teachers and charge something? And I’m like, well, I don’t want to. I want people to be able to have it because I want to be able to make Mighty Mila as user friendly as possible. So to be able to not just be a fun story but also to be a tool for parents and educators and therapists to be using and easy to just pick up so the book is fun story in itself. At the end of the book there’s supplemental activities builds right into the book where there’s basically iSpy type activities where you go back to a sea. In the book and it says, gives you clues as to what the child needs to find. And it’s a sneaky way of building your child’s vocabulary, right? And so that’s all in the book and then outside the book, this activity pack on my website, MightyMila.com, is a free supplemental resource that’s 64 pages of printout worksheets and things like that. So that’s all there for anybody to use along with the book. And then I’m also coming out with a second book in the Mighty Mila series called Mighty Mila Dream Job. I’m going to be launching it September 19 on Kickstarter preorder campaign, and I’ll be getting that out. And that’s all about Mila, exploring what she wants to be when she grows up and learning that she can be anything and everything that she ever dreams of. And it’s another fun book. It’s going to have supplemental activities. I’m working right now on the activity pack for that book as well. So that’s all there. I also have on my website I’ve been doing since I started a book donation program, and I have raised over 700 books for donations to children’s hearing loss organizations and hospitals to get into the hands of kids that have hearing loss. So that to make sure that they have a book that represents them in their home. So for example, NYU Cochlear Implant Center, which is where Mila went, they have a book and they’re giving it to every child that luckily I’ve been able to raise enough books that it goes. And we’ve all been getting it to CHC and to a couple of other places so that they can get it into the hands of kids. And if you go on the website, you can order a book for donation for $10 and I’ll personally donate it to one of these organizations that I have book programs with. So it’s a nice way to kind of pay it forward to get it into the hands of children that will really benefit from it. That’s incredible. Good for you. That’s nice way to do it. It is. It’s really nice to be able to get it into these kids hands, especially at a point where they might just be hearing that they have hearing loss for their first time or their parents are learning and they don’t even know where to go. And now they have this book that then helps them kind of relate to Mila and relate to her in a way of being able to see, oh, look like she’s playing hide and seek and she’s riding her bike and she’s cooking and she’s doing all this stuff and life will become normal again. Even though it seems crazy a little bit at this moment, it’s like at that moment when they exactly need it and they might not even know they need it. So that’s terrific just to give comfort. Yeah, absolutely. Be so any last advice or thoughts that you want to share. About the book or for parents of children with hearing loss, I would just say kids are so strong and they can do so much. And as long as you are providing your child with communication, whether it’s through a hearing device, whether it’s through a sign language, whether it’s through a combination of both, the most important thing is that your child has a way of communicating. Because having hearing loss or being deaf doesn’t mean that you can’t do anything else. Just means that you have a little more trouble hearing or you can’t hear. But as long as you can communicate with others around you, then you can do everything and anything. It’s just where you don’t have that communication that people and children start feeling isolated, withdrawn. And that’s where I think it becomes really hard for them. I think as long as they have communication and a loving support structure that continually encourages them, that there are no boundaries, that’s it. There’s no boundaries. Like, my kids can do everything and anything, they just hear differently. And I think as long as you as a parent truly believe that, your child will see that, and they will believe that, and they will know that, and they will be able to do great things. I love that. Well, thank you so much for being on the podcast and sharing your experiences. And I wish you and your family continued success with all the hearing loss journeys going on there all together. And to remind everybody to learn more about Mighty Mila, they can visit mightymila.com and keep their eye out for the second book coming in September. So thanks so much, Katie. I appreciate it. Thanks, Sherry. So good talking with you. Thank you for having me.