Children’s Books, Literature and Representation - Episode 69 with Katie Petruzziello

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Katie Petruzziello, mother of 4 year old Mila, is trying make an impact in the world of literature. When Mila was identified with sensorineural hearing loss at 15 months old, and got cochlear implants, Katie wanted her to have books that reflected her experience.

Ashley Machovec, Mila’s teacher of the Deaf, wrote and published a book about Mila’s CI journey, called Mila Gets Her Superears. But books about cochlear implants, and deaf/hard of hearing children need to include more than just their audiology journey. That’s what Katie and Ashley are doing with a whole series of books about “Mighty Mila,” featuring stories that promote the representation of deaf/hoh characters as part of various fun narratives.

2:15: Katie’s background

Katie developed a passion for writing children’s literature following the publication of Mila Gets Her Superears. Katie hopes that kids without hearing loss will fall in love with characters that do have hearing loss. Books about deaf/hoh kids do not have to purely focus on disability or access needs. There are lots of other story narratives to tell with these types of characters portrayed.

7:55: Katie noticing signs that Mila’s hearing loss was changing

Mila started dropping the high frequency sounds from her speech, she had more slurred speech, and Katie had to crank up her hearing aids. Eventually, Mila became a cochlear implant candidate and got her CIs. Parents can feel empowered by surrounding themself around experts who will closely monitor their child’s case and should keep up on regular check ups and testing.

15:40: Attention to Mila and the balance with her siblings

Mila gets a lot of attention due to her condition, but luckily her older brother Luca is very supportive of her. It is important to find things that the older siblings enjoy doing and it’s good to include them in the conversations around a sibling’s hearing loss as well.

19:00: Katie’s next book and upcoming projects

Mighty Mila is Katie’s newest book and is a follow up to Mila Gets Her Superears. The plot once again focuses on Mighty Mila. Katie hopes to write more books for this series going forward.

To support the All About Audiology podcast, visit our Patreon website here: https://www.patreon.com/allaboutaudiology

For more resources and research visit:

Mightymila.com

https://www.instagram.com/mightymilastories/?hl=en

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Episode Transcript:

“I want to make it a book that kids without hearing loss will pick up and fall in love with a character that has hearing loss and realize that we are all more alike than different and that, hey, this is interesting. Like, I see this character, she has hearing loss, and she is achieving everything and anything that she sets her mind to and it’s not a book that is so focused on the disability that it alienates kids that don’t have hearing loss.” – Katie Petruzzielo

Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. And on this show, we talk about audiology and your experiences. What is it really like to have anything to do with hearing tests and audiologists and teachers of the deaf and being a parent, a teacher, all the different angles. We’ve got lots of different podcast episodes for all different things, so check out allaboutaudiology.com. Use that search bar and find a topic that’s interesting for you.

Today we are talking about something that is very close to my heart and that is books, literature, reading. All the most important things. Reading is fundamental. Did you have those signs in your library growing up? I did, haha. We actually recently did a podcast episode with Valerie James Abbott, who is the author of Padapillo and the story of how she put that book from her family’s experience. I’d really like to start a little bit of a series here on different children’s books in this space and how we can expand our bookshelves and get to accessibility and inclusion and all the things that we care about.

So, today on the podcast, I am joined by Katie Petruzzielo who is the author of the Mighty Mila book and book series, hopefully, all about the delightful young superhero, Mighty Mila.

Dr. Lilach Saperstein: “I am so excited to welcome you, Katie, to the show.”

Katie Petruzzielo: “Thanks so much for having me. This is really exciting for me.”

Dr. Lilach Saperstein: “I really love books in general. It’s just such an incredible tool. It can not be overlooked. It’s almost like obviously, how can you not even say that. From an educational perspective, from all the different ways that we know we can use books as a tool, but then to make it even a sharper tool and get exactly the tool we are looking for. That’s what you are doing and what I’d love to hear about.

Why don’t you start by telling us a little bit about yourself and your background and how you even got to the idea of being a writer.”

KP: “Writing was never something that was on my radar and it just came to me because of our journey with hearing loss and because of the deeper mission behind the reason why I’m writing this book. So, my daughter Mila, who is four years old, she has sensorineural hearing loss. She has cochlear implants right now, she got them about a year ago. Her hearing loss was identified around fifteen months old. It was mild at the time. She got hearing aids, which were wonderful and helped to amplify the sound to where she was able to do very well with speech, along with her speech therapist, her teacher of the deaf. We had a good amount of services. Immediately upon identification, we started services and they have been critical and our therapists have become part of our family and they are just amazing.

She had hearing aids for a few years and then her hearing just suddenly started dropping over a period of six months. It went from mild to moderate to profound loss so her hearing aids were no longer able to support the level of hearing that she needed to be able to continue developing her speech and she quickly became an implant candidate and we got her cochlear implants right before everything shut down around here, in New York, last February/March of 2020.

She has been doing incredible with them and my journey with this book is actually really funny how it came to this. During our journey with hearing loss and as Mila was about to start, we were talking about getting cochlear implants, I was talking to my teacher of the deaf, Ashley Machovec, about really, what are the good books out there, what are there that I can start reading to Mila. It’s not really easy to start talking to a four year old about your sensorineural hearing loss and because it’s profound… You have to approach it to them with stories. And just with talking to Ashley, she was like, you know what, I’m going to write a book about Mila that I’m going to publish for other kids. And she did.

She wrote a book called, Mila Gets Her Super Ears, that was published last year and it’s great. It’s about Mila’s hearing loss journey, from initial identification to hearing loss, and getting the aids, to the cochlear implants. She created it for Mila and now it’s out there for other kids. And as part of that journey, I realized that these books are great. But now, I want to take it to the next step to where those books aren’t about specifically the hearing loss journey, but where a character, a main character specifically, has hearing loss and they are just a regular kid. Because that’s what they are. They are regular kids that can do anything and everything. They have fun. They are silly. They get into trouble. Where are those books where Mila and others can just see themselves as a hero in a story where the focus isn’t all about their hearing loss journey. Mila has her cochlear implants. She doesn’t want to read about characters getting cochlear implants anymore. She’ll say, how come no one in these books have cochlear implants? So, I was like, I got to write this book.

Mila is the kind of character that was always meant to be a story book character. She is incredibly spunky, she’s hilarious. She’s just like a little spitfire and I can take anything she says and put it on a piece of paper and it’s like gold. She’s just so much inspiration and my other kids are hilarious too. I think it was just kind of aligned and I was like, you know what, I want to write that book for kids that are out there that have hearing loss and can see themselves represented as a main character in just a fun story. But then equally as important, I want to make it a book that kids without hearing loss will pick up and fall in love with a character that has hearing loss and realize that we are all more alike than different and that, hey, this is interesting.

Like, I see this character, she has hearing loss, and she is achieving everything and anything that she sets her mind to and it’s not a book that is so focused on the disability that it alienates kids that don’t have hearing loss. I think they will just learn from it because they’ll fall in love with this character and there are subtle references in the book to the cochlears and how the cochlears (the cochlear implants) help her with achieving her goal of being a big kid and that’s what the book is about. It talks about how they help her but it’s not the main focus of the story, if that makes sense.

I’m sorry, that was a lot of information.”

LS: “No, I’m really glad you brought all of that in because it’s so important to see yourself represented. Everybody talks about all the different ways that we need to see representation in media and in the people around us and in the books that we read. That is missing. How many times are you going to read amazing stories where the whole plot is hearing loss. Hearing loss is identified, hearing loss is discovered, what are we going to do about it, how is this going to affect our family. It’s an important story and it can be told in all different kinds of ways. But then I love that there is more to the story after that, the rest of your life.”

KP: “I was going to say, those stories about the hearing loss journey were so important for us. Mila is the first deaf person we know so it helps us too and it helps her to read books like that about the hearing loss journey, but you’re right. It’s about, well what’s next? It’s not the be all and all and it doesn’t define everything about the character. What else after that?”

LS: “It almost reminds me of those books where the character has a new baby, like introducing the toddler to the baby and there are lots and lots of those books. And then you don’t not have books about people having siblings. It goes on after that. That’s one whole subset of a story.

What I wanted to ask you about is to talk more about the time period where you noticed that her hearing was changing and how you were able to see that. What were some of the signs? What was it like to kind of have an acceptance or an understanding about what her hearing loss was and then having that change? What was that like for you?”

KP: “It was nerve wracking not knowing whether her hearing loss was going to change. We don’t have an understanding why she has hearing loss. We’ve done genetic testing and we have no cause for it. So, we weren’t able to tell definitively, will it just stay mild forever, will it progress, get worse… So, I think the unknown for us was tough. Just going to the audiology appointments and wondering if it’s still where it was last time or has it changed. And then when it started changing, it was like, well was it just a one time blip that it shifted a little bit or is this now something that is going to continue to progress and get worse.

And for us, it was something that continued to progress and get worse. It was actually really tricky for us to notice outside of the audiology testing because she’s exceptionally adaptable and she’s really good at compensating. So, I think the speech therapist and others were able to notice because she started dropping the high frequency sounds from her speech. The word, “she”, became kind of consistently became, “he”. We started hearing more slurred speech a little bit because of that inability to receptively hear those high frequency sounds so she wasn’t able to express them. We started doing pretty frequent testing with our audiologist because of the progression and it wasn’t staying stable so we were all noticing it all at the same time and cranking up her hearing aids as much as it could go. It just became pretty obvious that her hearing aids were no longer able to be able to provide her with the right access to sound and we started down the discussion with our ENT about cochlear implants.”

LS: “The reason I bring that up is because that I don’t think people recognize that that uncertainty and that possibility is always there for everyone, even children born with typical hearing, that might not be the case for their whole life. Actually, as we get older, likely, will not be the case throughout your lifetime. So, even in the bigger conversation of Covid, this is just some of the things banging around in my head, if you don’t mind me go off on my thought process here.

People are talking about this new expression, I never heard this before, but saying that someone can have a disability while someone else doesn’t have a disability yet. Because the likelihood of having a disability sometime throughout your lifetime, is actually very likely. When you broaden the definition of disability and when you look at the entire lifespan, that’s something that we are going to be dealing with in different capacities.

Parents should keep an eye if there is (something going on), to do that every six month testing early on and then yearly testing or any time you notice a difference or any time anyone on your team, like your speech therapist were big on noticing things. Have the whole team keep an eye on what’s the status and staying really firm with your follow ups, not just letting that drop off. I think it’s really important. So, you were being kind of followed throughout the whole process of that.”

KP: “You know, I hear stories about people saying, I had no idea that my child had hearing loss for a very long time, because speech development is so different depending upon the child and there is such a range of when kids start being able to produce different sounds, right? So, it is hard to pick up on it. Especially for us, we had hearing loss on our radar with Mila because she had failed the newborn hearing test in the hospital. But upon a comprehensive follow up in a children’s hospital after she was born, we were told that she has normal hearing and there is nothing to be concerned about and get her checked out at her one year appointment.

So, we kind of had an inkling a little bit, buzzing around in the back of our heads. She never showed any signs, it was mild at that point. We never saw any signs or any indication of loss. And then at the one year appointment, she failed the basic pediatrician test. That kind of catapulted us into our journey. But if we hadn’t had that initial testing in the hospital that put something in our head about it, it would have taken us a while to figure out that she had loss because it was hard for us to believe it at first because she compensated so, so well with just other cues, gesturing and whatever. It was mild at that point.

So, I think that really just kind of keeping an eye on your kid and just really trying to think critically about it. And then once you have an inkling about anything, going and getting the testing done. Surrounding yourself by the right professionals is the best advice I can give anybody because we weren’t experts. We’re never going to be experts. We learned a ton but surrounding yourself by the people that help lift you up and help you support your child, it is just so critical and we are so lucky that we have an amazing support network.”

LS: “That’s awesome. I’m guessing because you said you had no history of hearing loss in the family and much like the majority, 90% of deaf children are born to hearing parents. That’s one of the big stats that we know complicate and comes into play in a lot of different issues because you don’t know about it, necessarily. It’s like a whole new world. That’s something that I think I specifically focus on with the podcast and the work that I do with parents, is about being both overwhelmed but also having a big responsibility of becoming a manager, trying to navigate all these things as a parent, also probably as a new parent to a young (baby). Now that we have newborn hearing screenings, which is awesome, but that means they are catching you at day 2, 6 weeks, three months, like newborn baby stage. Not so fun to run around to appointments at that time.”

KP: “It was definitely a surprise and kind of something we had to take in stride but we just kind said, we’re going to figure it all out and we’re going to do everything we need to do to support her so that she can have everything that she will ever want. Her hearing loss is part of what makes her amazing and so special. It’s a very unique and special aspect of her. I try to tell my other kids, I have a six year old and a one year old, too. So, the one year old doesn’t know what the heck I’m talking about. But (I tell him that) everyone has something that is special and that’s different and that’s what makes the world interesting.

And so, this will shape her, as a person and I think it will shape her in a really, really good way because she is strong and she is spunky and she is determined and she has the right personality to excel no matter what and so I think that it’s just how it was meant to be. You never know what journey you’re going to be put on in your life so I think you just kind of have to take it all in stride and just look for all the positives and silver linings in everything.”

LS: “That’s a beautiful perspective. Everyone needs to hear that, haha. No matter what’s going on with your family, with your children, with your self, that it’s always going to be complex. There’s no simple rainbow life. Nobody has that, sorry to burst your bubble.

I’m also interested in hearing about your six year old and what it was like, that Mila was second.”

KP: “So, I have a six year old, Luca. He just takes it all in stride too. He’s kind of wondering why Mila gets all these books about her. I’m actively focused on that aspect of it, too. It’s just that Mila gets a lot of attention with speech therapy and teacher of the deaf and various accommodations here and there. So, one of the things I did in this book for Luca, he’s crazy about the color purple for years. It’s everything, he loves purple. I love it. I hope he never doesn’t like purple. I love that he loves purple so much. And he loves cats. So, in the book there is a purple cat character. And I tell him that this is for you. There is a purple cat character in the book and he’s so psyched about it and excited and everything. You know, it’s trying to help him out in that regard too. But he’s very supportive, he’ll sit in her virtual therapy sometimes and he’ll be doing worksheets with her and he’s very supportive. For them, she’s not different. It’s just my sister has cochlear implants. When they are off, she can’t hear and when they are on, she can. It’s just the way the world is. It’s not different for them. It’s just all they know.”

LS: “That’s fabulous. That’s fabulous that you are including him. I think a lot of parents that I speak to also mention the guilt/confusion about how to include their other children in the family. Just the amount of time it takes. So, if you have other advice for families listening, what would you say?”

KP: “Find something for the other kids, the siblings. Find something that’s important to them. Luca loves sports so we are taking him to baseball three times a week and soccer once a week and reading him his chapter books every night. Just find the special things that are important to them and hone in on that and just focus on that. I think it’s important to give them their special time. Just include them in the conversation.

I just had this newspaper article written about me and this book and it was a big surprise and I was so excited. Luca was sad that his picture wasn’t in the newspaper article. So, I sat him down and I talked to him about, he’s six years old so I’m not sure how much really got through, but just starting the conversation early about look, think about how many books have characters that look like you. He said a lot of them do. So, I said, how many books do we have that have kids with cochlear implants? We do have a few because we buy them, but like one out of 30 books have a character with cochlear implants. Most people don’t have any books with characters that have cochlear implants. How would that make you feel if people had no books that look like you. So, we talked about that for Mila it’s because it’s really important to get this out there for kids that have cochlear implants. So, he was like ok, I understand. For now, haha.”

LS: “I love that. That’s an excellent explanation. I think that’s very, very helpful. It’s so good that you are also pointing out that newspapers talk about exceptional things or unusual things so that there’s a story. Luca hears is not the story. That’s really good. I like that.”

KP: “Exactly.”

LS: “Tell us a little more about the developing of the plot, the characters, what happens in these books, what age range are they for, as well.”

KP: “Yeah, it’s children picture books. So, it’s targeted age range is 3 through 8. This book, Mighty Mila, is on how Mila wants to be a big kid. She wants to prove to her parents that she can be a big kid and she’s gonna do it all on her own without asking for help, not even once. So, she goes on kind of a journey to do these things that she feels are big kid tasks and she is able to achieve a lot of them through creativity and her own kind of fierce, unstoppable determination. Even her cochlear implants help with some of them along the way in regards to hearing things that she needs to hear to achieve the task. And then she is faced with a challenge that she can’t figure out on her own. She then needs to realize that part of being a big kid means asking for help and how can I achieve this. Maybe not on my own, but through the help of my family. So, it takes place in one day.

The illustrations, I searched for a very, very long time. I searched for over three months for just the right illustrator and I’m so glad I did. I found a wonderful illustrator based in Finland. Her name is Nadia Sarell, she does a bunch of Finnish, some UK and some American books as well. She works for an agency and she is just phenomenal. Her colors are just so bright and detailed and whimsical and just so colorful. It just brings kind of the spunkiness to life and she has been the most amazing person to work with, too. She just sent me the final illustrations last week and I’m so sad that we are done kind of talking back and forth all the time. So, it’s a really nice combination of a lighthearted story with a character with cochlear implants and gorgeous illustrations as well.”

LS: “I guess that’s the pre-cursor. But we’ll see the final (soon). When you said spunky, I was like, yup that comes through. She has a little bit of a bouncy energy that you can see in your illustrations. So, definitely you can find it on Instagram at Mighty Mila?”

KP: “@mightymilastories on Instagram. And then on Facebook, it’s just Mighty Mila.”

LS: “I’m really excited to see how the Mighty Mila book comes out and even future books about Mila and how she grows. It’s really fun to follow you on Instagram. We hang out over there everybody, so come follow, come join @allaboutaudiologypodcast and all the fun things happening on Instagram. So, if you want to send people to mightymila.com and the kick starter, where should they go?”

KP: “I’m launching a kick starter on May 18 until June 16th. You can just go to mightymila.com and find out information on the kick starter. @mightymilastories on Instagram is also a really good place to go. I’m in the process of getting last minute things pulled together to launch the campaign. It’s just a nice opportunity for people to get the pre orders of really, really top quality, hard cover signed books and some other fun Mighty Mila goodies that will just be exclusively offered through the kick starter.”

LS: “That’s so exciting. I love book launches. I get that, that whole energy of building something and putting it together. And then it’s like, ahhh, it exists. I’m definitely excited about that.”

KP: “It’s nice. I’ve been working on it for a bout a year now. Basically between the hours of 9 o’clock at night and midnight, I am working on this book pretty much every night, aside from my day job and my kids, which are also a full time day job. So, it’s just really been fueled by passion for me and really the purpose of getting more inclusion out there into the world. So, it’s been fulfilling.”

LS: “Thank you so much Katie for coming onto the All About Audiology podcast and sharing your story and Mila’s story and I look forward to seeing the book.”

Thank you to all the listeners of the show. If you would like to support the show, please find us at patreon.com/allaboutaudiology to be a supporter of our community and join the Facebook group. Find me on Instagram. Thank you for listening. This is the All About Audiology podcast. I’m Dr. Lilach Saperstein.