Amplified Podcast

About Amplified Podcast

Amplified: Presented by Lurie Children's is a mini-series about growing up with hearing loss. Season 1: Katie Radasevich already demonstrated a speech and language delay when she was identified with a significant hearing loss at age two. Listen to Katie and her family share the journey from pre-diagnosis to Katie's current incredible accomplishments through anecdotes, tears and laughter - very loud laughter. This is a great resource for families who have a child with hearing loss, or anyone who enjoys uplifting human interest stories. Season 2: Dr. Katie Colella returns, now joined by Dr. Katie Farnsworth from Season 1, to co-host Season 2 of Amplified: Presented by Lurie Children's. Laugh and cry as they unpack the story of Maria Perez, and her sons, Eduardo and Esteban Venalonzo, both diagnosed with significant hearing loss at a young age and the family's subsequent journey with cochlear implants.

Publisher

Ann & Robert H. Lurie Children's Hospital of Chicago

Category

health & fitness · kids & family

Language

en

Explicit

No

First episode

18 Mar 2022

Latest episode

1 Jun 2023

Latest episodes

10 episodes in the feed.

1. 

   1 Jun 2023

   Season 2, Episode 3

   Maria shares her experience raising kids with multiple communication modalities and her own language journey. Guest Tatum Frtiz, aural rehabilitation therapist, discusses the benefits of therapy and how the field has evolved regarding culturally and linguistically diverse patients. Episode Transcript Katie Colella [00:00:00] You're listening to Amplified presented by Lurie Children's. Transcripts of this and all episodes can be found at Lurie Children's.org/Amplified. Katie Farnsworth [00:00:12] Over the season, Maria has openly shared her journey of parenting her two sons with hearing loss, Eduardo Jr. and Esteban. Raising any child in a healthy and loving environment requires some level of selflessness and stepping out of one's comfort zone. But Maria and her husband, Eduardo Senior, arguably made one of the hardest sacrifices when they chose to focus the boy's therapy and spoken English and not spoken Spanish, which was their first and home language. Katie Colella [00:00:37] This episode sheds light on how the field of treating children with hearing loss used to recommend children commit to only learning one language to maximize success. That, unfortunately resulted in non-English speaking families being counseled on only speaking English to their children, even if it wasn't the home language. Today we know better. Research shows all in any natural language is important. Even if a child attend school in a language different than their home language. Even if that child has a hearing loss. Maria Venalonzo [00:01:11] Maybe its most because of the language and then my husband don't speak the same language. He speak more Spanish. And then he understand English, so. But, you know, like, he's really good in sign language, let me tell you, because he's, he was like, more interesting in signing than the surgery. And I was more in the surgery then sign language. But and he became really well and that I think part of that because he's he has hearing loss and then he's working on making appointments for the specialists. When they always play baseball since they were so little. So one of the coaches came to me and then he told me, "Your son is not listen to me now." Really? What? "Yeah, I. I give it. I tell him what to do and he don't follow direction." I was like, "Oh." And then I look and I guess if you're not following directions to the coach, I say, "Yes, Mom." I like what he's saying you not follow direction. He say, "He speaks Spanish to me and I don't understand what he's saying.” Katie Farnsworth [00:02:21] Oh. Maria  Venalonzo [00:02:21] And he look at me like, "He speaks Spanish?" I was like, “No." Oh, like "I'm so sorry. I'm so sorry. He was apologized to so many times." There was, they thought because we're Hispanic. My kids speak Spanish. Katie Farnsworth [00:02:36] Did he speak Spanish to all the kids? Maria  Venalonzo [00:02:38] Yeah. Katie Farnsworth [00:02:39] Okay. Maria  Venalonzo [00:02:40] I was like, oh, but, you know, like, most of our community is speak Spanish. So they assume my kids. When they see me, like, "Oh, well, your kids speak Spanish." And my other kids, they speak Spanish, but they never address the probably about the situation. Because even in my family, when I send my kids to Mexico, I have to explain them really well about like why they don't speak Spanish. Why is the reason? And then at that time, I don't I don't know to you. But they told me they I had to choose one language. And I were like, oh, I had to learn English, of course, because my first language is Spanish. So I went to school, I had to learn English. So I had to explain to my family why like why they only speak English and still like Spanish. Well, I mean, they speak some English too, but they don't know, you know. And then so I told them so. And then he say they told me, like, but you speak Spanish, why your kids don't speak Spanish? And then I explained it. They don't understand it. So they meet them and they they say, "Oh, so now like where I think why they only speak English." So and then I mentioned that or to the team why they always speak Spanish, I mean, English, why they make a choice? And then I feel like and now they do their research and they like hearing they can learn any language. And I actually I have friends from Pakistan and her daughter has hearing loss too with cochlear cochlear implants and she speak Arabic, really well. So I was like, so, you know, like, I understand at the time, like it wasn't many research and then but now, like they they don't make, you know, you can pick up any language. And then Esteban speak a little bit Spanish and Eduardo too. But they always like making fun of them because they say no I speak better Spanish. No, no, I speak better. So they always like picking on each other. I am like stop it, boys. I speak better Spanish then you guys. But because my accent, I feel like and my kids, especially because it was my first one, I always talk about Eduardo because he was my, I feel like a he was my teacher. He was my my first boy that I had to learn everything from him. And I was like, "Oh, you're my number one." And then I say, "You're so special to me because you are my number one." I had to learn so many things because you and its not in the wrong way I told him, like is because all the good things is because you teach me all those things. And then I'd say, "How about how about Renee? We Renee teach me how to be a mother by you teach me all the things that I know now. Because of you  I had to, I went to school. Because of you I had to learn like about the cochlear, because I had to, you know, to learn about all this situation that we can learn from you. Yeah. That you are my number one. And then I say, you're my number one. No, you're my number two Esteban. Because, you know, you're my baby. I had to, like, give you all the things. He were like "Yeah, you had the number one." Well, yeah. No, but, you know, like, it all good with them. Katie Farnsworth [00:06:15] Do you feel like you had different feelings learning the diagnosis about Esteban, given that he you already had these experiences with Eduardo? Maria  Venalonzo [00:06:25] I feel like with Eduardo I went through a lot. So I always feel like I could do better for Eduardo. And then it took me more time to take decisions. And then sometimes I feel it. That's my fault. But looking at him, where he at right now. So, like, I didn't I. I made the right decision. Katie Farnsworth [00:06:58] I think you did right by Eduardo. He just had a different path. Maria  Venalonzo [00:07:01] Yeah. Yeah. Thank you for telling me this. Katie Farnsworth [00:07:05] Yeah. And you had a different path to, you know, there was so much going on. And I also think, you know, you were navigating a lot of it by yourself. And I think also trying to navigate all of that in a language that wasn't your first language adds a whole other level to, you know, that you were trying to find out a lot of really important information in another language. What was that like to feel that, you know, was there a certain method that worked best for whether that be like an interpreter on the phone or, you know, what what was that like at the beginning? Or, you know. Maria  Venalonzo [00:07:45] It was one situation that made me like went back to school because there was one situation. There was like talking with the interpreter and I don't say the interpreter better. I think when when there's a translator, when one language in another language and I feel because I experienced that in that way. Whenever you're trying to say something, I don't think it's that they say I'm wrong. It's like your emotion got lost in this miscommunication there because, you know, they they just gonna translate whatever you say it but it's not emotions there so it's not they you're showing your feelings. And then it was one time day I was telling about something about Esteban, she say. And I was like, no it's, it's not what I mean to say. So and then I had to force myself to speak my English right, because I was like, "That's the only way that I got to do it." So every time when I was like doing some medical stuff, I always ask for translator. So to that they will, at that time I was like in school so, like is not what I want to say. So I was like, You know what? I talked to Miss Young because it was to her. I was like, you know, what is this what I mean? I mean, like, I don't want to say this in that way, but this is what I mean to do or to say and so she say "Why you just speak English? Why have you not been speaking?" Like, iit was because I was too afraid. You know, this is very important to make decisions. So that's the reason like but it so yeah, that's the only decision. And then I have to to learn more. And then it made me like my kids, I think my kids, they were like pushing me. You had to learn more. You had to learn. So I and then I also so there I am. Katie Colella [00:09:42] And where your son's in programs that spoke English, the schools they went to. Maria  Venalonzo [00:09:48] They always. Katie Colella [00:09:49] Always in English. Maria  Venalonzo [00:09:50] Was English as well. Katie Colella [00:09:52] So that they're exposed to. Maria  Venalonzo [00:09:54] And that was my therapy too. Katie Farnsworth [00:09:56] Right? Maria  Venalonzo [00:09:57] So yeah. And then I saw later on that like and then, you know, like you sometimes you, you take like that where you learn you're taken to another family or you introduce it to another family. Cause it was one time that I'm working an event. So events only is seasonal. So it was like over the seasonal, so I am like what I what I'm going to do now? What are you going to do now you aren't going to have no money. So they offer me these job to take babies, which I never did it before, so were like so something they know from me. So I like okay. And then he's a lawyer in then and she's a teacher. So I like, okay, he speak Spanish but she doesn't. And so I like, okay, so there we go. So I got the interview they asked me was their first baby. So they asked me if I was I have an experience and I went like, "Oh, I hate to say this one, but now I don't have experience." And she was, they were like, "You don't have no kids?" And I was like, "Yeah, I do. But I take care of my own kids, not to somebody else kids." And then so she said, "So then you have experience."  And then I say, and then she say, "Well, my mother in law told me that you had two special kids." And I was like, "Yeah, we're hearing loss." And then she were like, "Yeah, yeah." And I was like, "Yeah, yeah. I got two kids with hearing loss."  And said, "Well, you have more than the experience. So for me, it's enough."  So I start taking care of this baby and this funny because I start teaching her sign language. At that time they traveled to Africa and then the moms she was asking the baby was asking her to give him more. And I was doing signing and I was like, "Oh, she had to come in and say, Oh, she's asking me for something, or she'll say something to me. But I don't think what she's saying. Could you please tell me what she's saying?" And they were like, "Okay, show it to me." And then say, "Oh, she's asking for more milk." They were like," Oh, my goodness. We are so dumb." And so I was like, "No, no. It's just like, it's how I communicate with them with the girl." So she's now she's eight and then so she's always come to me .And then, both, the parents are very great with me, and then they always like thanking me for things. But when they make you learn something, you think your that's it. No, you're like, you know, once you're like, you're going to use it. So I use that with this family. And then they got another boy, and then I went the same way and they learn a little bit sign language. Learned that basic ones. Tatum Fritz  [00:12:45] My name is Tatum Fritz , and I'm a speech language pathologist at Lurie Children. I work on the aural rehabilitation team. Katie Farnsworth [00:12:52] And how long have you been an aural-habilitation therapist? Tatum Fritz  [00:12:56] Sure. So I graduated grad school back in 2015, and I've been working with the hearing loss population since then. So I've been providing aural rehabilitation therapy since 2015. But I got my listening and spoken language certification in, I think, 2019. Katie Farnsworth [00:13:16] And can you talk about that certification? Because I feel a lot of families don't realize that there's this special certification for working with kids with hearing loss. Tatum Fritz  [00:13:24] Sure. So it's a very long process to get this certification. And I would say that it almost felt longer and more cumbersome than getting my speech language pathology license and like a master's degree. It's a 3 to 5 year process, during which time you're supervised by another listening and spoken language specialist mentor. My mentor was Rollen Cooper at Child's Voice here in the Chicago area. He was amazing. So nice. He had to observe me. I think, like I can't remember what I felt. It was like 30 observations. And every time, like whenever he needed to give me feedback, he was like, "I wonder if you could do this next time." And I'm like Rollen you can tell me if it wasn't good. But he was great. And my certification comes through the AJ Bell Academy, which is an organization that's dedicated to working with people and children who are deaf and hard of hearing and their families are people in their communities. And typically like deaf and hard of hearing either people or children who are learning how to listen and talk. Usually, usually with amplification, like a hearing aid or a cochlear implant, you can get the certification if you're an audiologist, speech language pathologist or teacher of the deaf. So obviously I'm a speech language pathologist. My mentor was a teacher of the deaf, and it's a long process. You gather like a thousand clinical hours, like 30 formal observations, you write an essay, every single observation comes with like three pieces of paperwork, and then you, after the end of that, you submit your application has to then be accepted. I think mine was like 100 pages long, and then you sit a test. And so then if you pass the test, then you're certified. Katie Farnsworth [00:15:10] Wow. Tatum Fritz  [00:15:10] And then it's something you maintain. So every two years you have to get a certain number of like continue education credits. In the area of listening, a spoken language. Katie Farnsworth [00:15:20] I feel like that really makes you cream of the crop then when it comes to working with these kids who have hearing loss, you know that you have just such an extensive background to provide services, you know, for these kids. Tatum Fritz  [00:15:33] Yeah. So the listening is spoken language specialist certification I think is like a nice sign for families when like trying to locate a specialist or a therapist to work with their child because then you can be confident that they have that background knowledge. I will say I've worked with like really good therapists who have similar level of skill that maybe haven't gone through the credentialing process and in are often just as good. Not to like miscredit or like downplay like, you know, our entire team actually has a listing spoken language specialist certification here at Lurie right now, which is just a great it makes it easy for a family to find a provider, but there are definitely good providers who don't have it. You want to look at their, like, quality of care. And like, I've worked with amazing people in the Chicago area without it. Katie Colella [00:16:17] Yeah, and speech language pathology has become so sub specialized over the past couple of decades too. So it is important for families to be able to find the right type of provider for their child. Tatum Fritz  [00:16:30] Yes, exactly. So I feel like my my main specialty area is hearing loss. But yes, sometimes you might be working with a speech and language provider who doesn't have that background knowledge. So just having a speech language pathology masters doesn't mean that you have that knowledge of hearing loss or especially that knowledge of like how auditory skills develop in a child with hearing loss who's using a cochlear implant. Katie Farnsworth [00:16:52] Yeah. So I think it also then goes to show that you guys are really specialized, like you said, working with children who have cochlear implants. And if these parents who really have goals for their parents, for their kids to be oral communicators. Tatum Fritz  [00:17:05] Hmm. Yeah. Yeah, exactly. So it makes it easy for them to find us, I think. Katie Farnsworth [00:17:10] Yeah. Well, you and I have had some previous experience on a podcast together. I know you're the former host and creator of The Child's Voice All Ears podcast. Tatum Fritz  [00:17:21] Yes, All Ears. At child. Katie Farnsworth [00:17:23] All Ears Child. Okay. Tatum Fritz  [00:17:25] The ears of Child's Voice, I should know. Katie Farnsworth [00:17:28] A Child's Voice All Ears Podcast. And so it's so great to talk with you again. This is fun to kind of turn this around and learn more about you and what has kind of inspired you to join this field. Tatum Fritz  [00:17:42] Yeah, Yeah. And I will. Before we go further, that Jessica Brock was the co-creator. And I think by the time we interviewed you, Katie, for that podcast, Wendy Dieter's, That Child's Voice was my co-host. But my original co-host was Jessica Brock, who now works for Cochlear as like one of their customer service reps. shout out Jessica. But but yes, What was your original question? Oh, how did it get into the field? So I went to undergrad at the University of Texas at Austin, and I didn't really know what I wanted to do anyway, I liked language. And just on my initial application to UT, I like selected rhetoric and writing as my major, and my mother was like, "You might want to add something." She was like worried about my career options. So then I thought about being pre-med. I took like a couple of the pre-med sciences. Didn't really want to be go down that route, though. My mom was a teacher. She suggested that I, like, look into speech therapy and it kind of joined the major before I was even that interested in it. So thankfully it worked out. Why was at UT under the major, we were required to take like a cultural credit and I took the deaf culture class, which was like amazing course. It talked a lot about like the signing side of things, but it did talk about auditory verbal therapy and cochlear implants, and I just thought it was like fascinating. It was interesting to think of like speech and language, but then like this broader area that is both like cultural and identity and then also like, you know, writing in the devices, it just made like speech and language more complex to me. So I really like that. And then when I graduated, I went to the Vanderbilt for my master's and they have like an aural hearing loss specialty track that's like very much like listening a spoken language side of things. And that's kind of how I got into this area. Katie Colella [00:19:38] That's so cool. Katie Farnsworth [00:19:40] Esteban and Eduardo Venalonzo are both cochlear implant recipients and they were born with a significant hearing loss and they received AR therapy for quite, you know, quite a few years. So looking back for what their lives may have been like after they had been diagnosed, what kind of therapy would have been, you know, what kind of what would it what goals would have been targeted for those kids, you know, as a baby and then as they've gotten older? Tatum Fritz  [00:20:07] Yeah. Yeah. So as a baby, I think the the first step is would be an initial evaluation, right? To kind of see like what is the impact of that hearing loss. And often are kids who are getting cochlear implants will have a profound loss. So sometimes you know I think for some people it almost seems like redundant to do this evaluation because often results look the same. But I think it helps like visualize to parents like what is the impact of that hearing loss, which can kind of help them like accept that their child might need a cochlear implant if listening in spoken language is their goal. So I think that's the first step. Goals at that time are like helping parents learn, you know, device acceptance, device retention, keeping the hearing aids on prior to like most families, like our most kids will have like a trial period with hearing aids while they're going through the cochlear implant candidacy process. So like wear time and making sure the devices are on all day and families understanding the importance of that. Sometimes prior to a cochlear implant not always were able to get a detection response is starting to teach children to pay attention to certain sounds or work with different noisemakers. Some speech and then prior to the cochlear implant, a lot of it is just parent training. So we'll be educating the parent on what does speech and language development look like and how to how does their child's like auditory skills and their hearing levels that kind of effect that development of speech and language. So tons of teaching. Katie Colella [00:21:37] Yeah. Katie Farnsworth [00:21:38] And a lot of teaching before before we even, you know, consider a cochlear implant. Tatum Fritz  [00:21:44] Yeah. So we'll work on kind of in preparation for the implant will work on a lot of strategies that we want parents to start using day one and some parents are like well they can't even hear me. Some of the most of the strategies they'll like. We still want your child to you to talk to your child because you're still developing that bond with them. So you don't want to just like not talk to them. But then it's also getting in the habit of everything that's going to help them once that cochlear implant is first turned on. So getting a parent in the habit of using like narration or repetition of key vocabulary words or like acoustic highlighting of important words prior to even getting that cochlear implant. So they're already set up to like start practicing once the cochlear implant has turned on. Or getting a family in the habit of using like the auditory sandwich, which is like one of the hardest things I think to learn. In which we want to say the direction or the key vocabulary word first, then show it and then say it again. And that is so hard to take the gestures out of your normal like a just interaction with your child. But we know that that can build auditory skills, so we practice that prior to the implant. So once the implant is turned on, they're already ready to get going. But some of it too, is like just, you know, I think the time that the family has to spend with the audiologist is a lot shorter, whereas like sometimes we get to see families weekly. So we're able to help like fill in the gaps in their knowledge of hearing loss. We know you guys go over like how to read an audiogram and the parts of the ear and, you know, types of hearing loss and like hearing anatomy and physiology. But we really have the time to sit down and like talk it through with them because that is also important knowledge for them to understand their child's hearing loss. Katie Farnsworth [00:23:26] Yeah. And I feel like there's a lot of crossover then with these kids who also have hearing aids, right? Like maybe you know what I mean? The hearing loss isn't as significant, but so many of these teaching moments are just it's crucial, really, for any child who has a hearing loss in their family. Tatum Fritz  [00:23:41] Yes. Yes. So we also work with kids who have hearing aids and it often looks the same. There's just not that period of time where we're waiting for like that cochlear implant being turned on and mapped. You know, so same thing. We start day, day one. Often we'll see babies as young as like three months and start teaching strategies then. And we know that like kids with hearing loss, they need more repetition and input to learn spoken language than a child without hearing loss. So so we get them really early to start teaching those skills to the parent, even when the baby is like as young as like three months. Katie Colella [00:24:20] We talked with Maria, we talked about how the philosophy and expectations of language development is has changed a lot over the years. And even for you, Katie, where the choice used to be so binary, where are you going to talk? Are you going to sign? Are you going to talk in language or are you going to talk in language B? So could you comment on how that's evolved over the years, especially when thinking aboutthe Venalonzos, who their home language with Spanish primarily. I mean, it was their first language was Spanish before they entered this world. Tatum Fritz  [00:24:54] Yes. So for speaking in spoken languages, I think our field has done some harm in the past that we're trying to correct. And I hope moving forward, we can prevent the harm that has occurred. So, yes, in the past, families whose home language was not English professionals often tell them to stop speaking their home language to their child and speak English. It was thought that, you know, this child has a hearing loss. They're learning with a hearing aid or a cochlear implant. It's already going to be such a challenge to teach them one language if they live in an English speaking, speaking countries such as the US, like why don't we only focus on English? And this causes harm for various reasons of a family is truly monolingual and they only know their home language then one, they're not going to be able to provide a good language model to their child if they're trying to speak in, you know, short English phrases. I know I tried to speak to a child in Spanish. That would not be a good model for that child. Katie Farnsworth [00:25:55] Same here. Tatum Fritz  [00:25:56] Not the pronunciation especially. I might be able to get by with a couple of phrases. But it wouldn't be a rich model. And then even families who are bilingual where, you know, they could, you know, provide that nice model in English, that's, you know, for some families, their home language is an important cultural part of their lives. So to deny them that experience with their child is just um, definitely caused harm in the past. I would say that even now you still run into the a professional occasionally that will still like spout about this just from like the old days. So now we know that there is no research to say that a child with cochlear implants can't learn multiple languages in the most important part, especially early on, is just have a really rich language input. So I always tell family is like use the language that you're most comfortable with. If it's a bilingual family, they I feel like they have more of a choice, right? So it's up to them. Like if you're comfortable speaking English, if it's not a long term goal of you or of yours, for them to learn the second language that you know as well, that's fine. But if there is someone, the house is watching them like 20 hours a week, like a grandma, like don't tell your grandmother to speak in English. Like have them speak in your home language because that's going to be a more language rich model. And we don't want 20 hours a week with like a depleted model. So we have those conversations all the time. But yeah, definitely like a part of our field that, you know, has caused some harm. Katie Colella [00:27:27] Well, and the research changed. I think a lot more research got invested in culturally linguistic and diverse families and, you know, growing and developing and all language is good language. Tatum Fritz  [00:27:43] Yes, exactly. And I would say that this was an issue not just in the hearing loss side of the field, but in all parts of like the speech pathology field. Children who had maybe not a hearing loss but had a language impairment their families are often told to stop speaking their home language as well. And research shows that being bilingual or growing up in a bilingual home or growing up within a home language that's different than the majority language of the area growing and does not lead to a language delay and will never make language delay worse. So even for kids with like language impairments, it's not a good recommendation. Katie Farnsworth [00:28:19] So for the Venalonzo family, we have two brothers that are relying on two different modes of communication. So Eduardo is more depends on sign language for expressing himself where Esteban is oral. So can you talk about the goals in therapy? How about those sessions look different for those siblings? I think think of them if they're children again. I know now they're adults and young adults, but how would that look for those two? The difference? Tatum Fritz  [00:28:49] Yeah, we have a lot of families that choose to incorporate sign language or depending on like their their child's like a presentation or, you know, for various reasons might need to incorporate sign language. And you can still work on auditory goals at the same time. So I like I mentioned it earlier, one of our earliest strategies that we use all the time throughout the child's, you know, basically entire life is the auditory sandwich. So I like to put the sign in the middle of the sandwich. So it's the same concept. Basically, we're already already doing that. Often the middle of the sandwich or the visual part is like an object or a picture or an action or a gesture. In with a family that's using sign language is just becomes the sign. So if I was going to give a direction, I would say at first, wait, see if the child gets it. And then I would say and sign it. Wait and see if the child response to that. And then I would put it again just in like verbal language. So you can still build those auditory skills at the same time as building assigning signing skills. I actually sometimes enjoy when a family knows how to sign because then it's it's it can become a little easier to monitor auditory skills because if I say something out loud and the child signs it back to me, then I know immediately that they got what I was telling them, maybe even before they're like speech and spoken language skills are at that point, right? So I'm like, "Oh, I'm going to go get the cow." And then they start signing the word cow. And I know, Oh, you know exactly what I'm talking about. Katie Colella [00:30:20] Okay. That's interesting. Tatum Fritz  [00:30:21] So, it's kind of cool. But yeah, I would say when I first started, most of the families I worked with were only going the listening and spoken language route. And it's become I don't know, I'm I'm, I'm not young anymore, but I'm kind of a younger person. I feel like like millennials are more or sometimes more open to different things and wanting to try out different things. And a lot of younger families are just like interested and curious and sign. And I've worked with families where they'll they'll use sign in the beginning and then the auditory and spoken language skills take off so much that sometimes that falls off. But, you know, I feel like I have a lot more families that usually some basic signs. Katie Farnsworth [00:30:59] And that's back to your point, too, about just encouraging families to use the the richest model possible to write, whether that be English or Spanish or Polish, you know, whatever language is at home. That's the way they're going to learn. Tatum Fritz  [00:31:14] Yes. Yeah. Yeah. And making sure you're you're still using, like complex language around your child. So research shows actually when their child is diagnosed with hearing loss, their parent parents and teachers, including and deaf and hard of hearing programs use like simplified language and therapists to include us in it. So you have to remind yourself, like the way they're going to learn that complex language just by using it around them. But like your natural response is to think like, "Oh, we need to simplify things for them." But that's not, we want to simplify a little bit. So we're working at the next level that they are in their language development, but we're still exposing them to complex language at the same time. Katie Colella [00:31:53] I will say I definitely notice a trend in the kids who start aural hab therapy or work with a good therapist who is experienced with kids with hearing loss at a young age. It is amazing how much more information I can gather in an appointment because they are getting those listening skills taught to them. Their parents are learning them, their parents want to talk to them and they are great testers. I have infants who will do full ear specific evaluations and they're not even standing yet, but they can do those tasks. And you know, and I always tell the parents, this is a result of your hard work and, you know, your dedication to therapy. So thank you, therapists. Katie Farnsworth [00:32:43] Yeah, the development of that condition response is just crucial when it comes to us with testing because it can be very frustrating for our family and for audiologist if we are having these appointments and we're just not getting a lot of data because these kids just have just a unawareness of sound and a lot of that can be from lack of device use or not having, you know, the right therapy support that sometimes that then hinders their progress even more because we don't have the information we need to fully get the best picture of how do we help and how do we move forward. Katie Colella [00:33:30] Welcome back. Two for, two. Two Katie's two questions. Okay. My question for you, Katie, is because you are, you are you double majored in college, one major being Spanish. So you've studied Spanish. Did you start in junior high? That's not my question. That doesn't count. Just. Katie Farnsworth [00:33:48] Yes. Yes. Katie Colella [00:33:49] Okay. So I'm curious because you are pretty proficient in Spanish. I know you're conversational. Did you have any accommodations to help you with learning Spanish throughout? I mean, any period, Junior high, high school, college. Katie Farnsworth [00:34:03] Yeah. So I feel that my accommodations were pretty universal for whatever class I was in. So the biggest one being that remote microphone. And so all of my professors and definitely my Spanish professor wore a microphone and I had receivers that, you know, the microphone would then be transmitted to my hearing aids. So just really providing that better signal to noise ratio and allowing me to hear that teacher's voice really clearly. That was a big one for particularly for my Spanish classes. Also, I do remember in high school we had several exams where we needed to listen to a recording and then answer questions from that recording. And so that was something with having a hearing loss was definitely challenging because on top of it being in a foreign language, it also was on a recording that wasn't super intelligible. So I would actually opt to sit in a different classroom by myself with a recorder right next to me so I could hear it a little bit better. And then there was one instance where it was a particularly hard recording to understand that I was able to get like the transcript of the recording so I could read it and really, you know, be able to make sure that I understood what was being said so I could then answer questions. Katie Colella [00:35:28] Okay. Okay. That's great, though, that you were able to have all those different methods. Katie Farnsworth [00:35:33] Yeah. And in college I feel like most of my coursework was so much more conversational with my peers in my class, or we were reading literature and I felt like that's really was my time to shine, because especially when I was able to have it in, in that printed text, it was just so much easier to be able to figure out what was going on. And it was kind of funny because as a double major, I really I felt like I was the only one on campus who didn't study abroad, and that was just because of my rowing schedule. So everyone was developing these gorgeous Spanish accents, and I had this very Midwest Midwestern. Oh, like, you know, Hola, me llamo Katie, like. So that, you know, I think was also just kind of hilarious, too, on top of everything. Katie Colella [00:36:23] Now, it's still impressive. It's still impressive. What you got for me? Katie Farnsworth [00:36:28] Gosh, man. Katie Colella [00:36:30] I don't speak another language. Katie Farnsworth [00:36:32] I was going to say like So. Katie, do you have any experience learning a second language? Katie Colella [00:36:37] I took French in high school, actually. Well, I guess I took I took Spanish in junior high. But when I went to Bennett I decided to take French. And it is a beautiful language and I was not good at speaking it at all. I was better at reading it, but I just really struggle with the pronunciation part of it. When I went to college, I took American Sign Language as my foreign language, which I did love, because all my instructors were Capital D deaf. So there was no speaking at all. The very that the first day of 101 an interpreter came in to go over the syllabus and ended it with the interpreter, through the interpreter. Our instructor said, "This is the last time we'll be an interpreter. From now on, it's just going to, you know, we're only going to communicate through sign and writing if needed." And it was awesome. I feel I never progressed so well than I did when I took American Sign Language because you were so immersed and they really encouraged you to meet up and sign. And there was even some signing groups because there was a decent deaf community in the West Lafayette, Lafayette, Indiana area and even in in the Indianapolis area. When I did my externship at Riley Hospital for Children, I got to work with multiple patients who attended the Indianapolis school for the deaf. So again, I felt like you just I was immersed in a little more. But unfortunately since then, when I my first job, I was in an area when I went to Ann Arbor, there wasn't as many that didn't have as big of a deaf community. So then I wasn't seen those patients as much anymore. So and really, any time you lose learning a second language, you know, if you don't use it, you lose it. And so I definitely my my ASL skills are not as strong anymore, which I do miss that. It's something I thought about, you know, trying to like take a class again to brush up. But I did I did really love those classes and just being so immersed in it because I think that's how, that's the only way you really progress to that conversational level. Right. Or you know, or even like develop a more natural fluency like you were talking about as well. Katie Farnsworth [00:39:07] Yeah. Oh, that's so cool. And I do think it's such a cool way to and a significant way that you can relate to patients. Because even if you have an interpreter present, the quick understanding of, of what a parent is trying to convey to you. I think it does allow for a quicker connection with these families if if there is some type of understanding. And I think that I've definitely seen that working with Spanish speaking families, you know, where I will always still have an interpreter present, given the the importance of really making sure that they're now there are no communication breakdowns when we're talking about test results or parents are conveying concerns. But to be able to quickly kind of identify what is being said in the conversation, I do think allows for just a little bit of a faster communication and a deeper connection. And I feel like I've had so many families say like and especially when they can tell that I'm really trying, you know, if I don't understand something that I can just see that they really appreciate, you know, that you've you've really taken the time to learn this language. And so I actually am hopeful to become more fluent with sign language, too, because I do think, especially working with so many of these patients who have a cochlear implant and are using more of a total communication approach, it would be wonderful if I could just meet them on a different level too. Katie Colella [00:40:37] Yeah, that's awesome. Katie Farnsworth [00:40:39] Okay. Katie Colella [00:40:40] Next episode will be about Esteban and Eduardo in the school system, so stay tuned. Thanks for listening. Katie Farnsworth [00:40:46] Amplified, presented by Lurie Children's, is co-hosted by Katie Colella and myself, Katie Farnsworth. Written and edited by Katie Colella. Tech and Website Support by Katie Fanella Artwork by Katrina Garagiola. Special thanks to the Venalonzo family for sharing their story along with Beth Ternus, Dr. Nancy Young, Tatum Fritz and Marijo Fiacchino. We are grateful for the continued support from the Department of Audiology. Follow us and amplify the story. One word, no spaces. Transcripts are available at LurieChildren's.org/Amplified. If you need resources regarding childhood hearing loss, visit LurieChildrens.org/Audiology-Resources.

2. 

   1 Jun 2023

   Season 2, Episode 5

   Eduardo chats about college life and his journey with identity. American Sign Language (ASL) interpreter Marijo Fiacchino, interprets for Eduardo and offers her perspective on being a professional ASL interpreter. Episode Transcript Katie Colella [00:00:00] You're listening to Amplified presented by Lurie Children's. Transcripts of this and all episodes can be found at LurieChildren.Org/Amplified. Katie Farnsworth [00:00:12] For our final episode of season two we are excited to share our interview with Eduardo, the older son who Maria calls her teacher. Eduardo chose to share with us via American Sign Language. So you hear the voice of a fantastic ASL interpreter named Marijo Fiacchino speaking on his behalf. Katie Colella [00:00:28] During this interview, you will hear the sounds of Eduardo at Marijo's  hands moving, and Marijo  speaking softly as it is part of her process. You will also hear Katie and I frequently pausing while asking questions to allow Marijo enough time to interpret. Much of this was intentionally included to appreciate the importance of using a certified ASL interpreter in clinical care. Katie Farnsworth [00:00:52] It was really heartwarming to see just how proud of how proud she is of you. Katie Colella [00:00:58] We've enjoyed talking to your mom. Katie Farnsworth [00:01:04] Do you remember when your implant was first turned on? Marijo Fiacchino [00:01:07] First time? Remember that? Katie Farnsworth [00:01:16] For maybe your second one. Do you remember? Like, what are some of your earliest memories of coming to this office or, you know, working with your implants? Ed Venalonzo [00:01:36] The first time I heard after three years when I was three years old, I was still I was still surprised. It was a surprise to be able to hear. Katie Farnsworth [00:01:48] Yeah. And so you remember that? Eduardo Venalonzo [00:01:52] Uh? Kinda. Katie Farnsworth [00:01:54] Yeah. I mean, it's it's pretty awesome that even just a small memory from over, you know, over a decade ago, almost two decades ago. That was a big moment for your family, for your mom, for you, of course. And that really kind of started the journey for you. And so I think any memory you have is fantastic. Do you remember getting your second implant a few years later? Eduardo Venalonzo [00:02:29] The second one. The first one, I don't remember this. The first one and second one I did, I remember that was fine. But it's difficult because that's how people look. Is that new or is it different cochlear implant? It was just like the second one and it was successful. Katie Colella [00:02:58] Yeah. And there was a pretty big period of time, too, before you got your second implant, too. So I'm sure that experience was probably a little bit different also? Marijo Fiacchino [00:03:06] Also later, that was my experience. Eduardo Venalonzo [00:03:14] Yes, it was. Katie Colella [00:03:17] In the first season of Amplified on the podcast. We talked a lot about identity. How do you identify yourself when it comes to hearing and sign? Or in general? Eduardo Venalonzo [00:03:44] I'm saying both hard of hearing and deaf. That's how I identify. Katie Farnsworth [00:03:51] And there's no, like, one way that we identify ourselves, right? It's like a whole continuum. Eduardo Venalonzo [00:04:05] Correct? That's right. Yeah. Katie Farnsworth [00:04:07] How else, how else would you describe yourself? Like, if you had to kind of describe yourself to another person who's never met you before, how would. What would you say? Eduardo Venalonzo [00:04:23] If someone were to meet me, I would feel like, over the past year's, maybe it was, I mean, after three years went on during my high school years, I was shy. I wouldn't talk to people. Maybe, I wouldn't...I was too shy to talk to people like that, hearing people, you know. And now I'm not shy. I talk to my hearing friends and and I can meet new friends who are hearing and I can talk with me, and then they can talk with them. We can communicate with each other. And we can become good friends. Katie Colella [00:05:26] What do you talk to your friends about? Eduardo Venalonzo [00:05:35] Sports. You know what's going on with lunch, class type things are going on in class, that's all. Katie Colella [00:05:47] Like normal stuff. What do you think changed between when you were maybe a little more shy to now? Marijo Fiacchino [00:05:56] High school your shy and now not shy. Eduardo Venalonzo [00:06:06] More self esteem. High school was fun, but college, it's seems more normal is cool, you know. It's just, it's more fun being with my friends that can hear and doing sports, that kind of thing. Katie Colella [00:06:30] What type of sports do you play, sport? Eduardo Venalonzo [00:06:37] There's two I like. Volleyball and basketball. Katie Farnsworth [00:06:42] That's so. Katie Colella [00:06:45] Do you ever use. Eduardo Venalonzo [00:06:45] Thank you. Katie Colella [00:06:46] Do you ever use hand motions with your friends, or did you teach them anything to communicate in volleyball? In basketball? Eduardo Venalonzo [00:06:57] No, not really, no. Katie Colella [00:06:59] There's a lot of nonverbals in those sports. Katie Farnsworth [00:07:08] I don't know. I don't know if you know this, but Katie over here was a basketball player, so she's, she's all about those nonverbal cues. Katie Colella [00:07:18] So I. I guess I do appreciate that. You don't need any. Please don't look up my stats you would be so disappointed, Eduardo. Katie Farnsworth [00:07:31] What are you doing? Katie Colella [00:07:32] I just wanted to say, but I can appreciate that you don't really need any special signs I feel in many sports, especially basketball, because there are so many other nonverbal cues that I don't think everyone uses, hearing hard of hearing deaf, however, one identifies all the time. I think that's one of the best things about sports, honestly. Eduardo Venalonzo [00:08:06] Yeah, I agree. Like in high school, the coaches would bring an interpreter for the deaf and hard of hearing basketball team. But, you know, during the when he was talk, you know, they would kind of point and just gesture. But in college there's no communication necessary with the hearing people. It's just me and, and I can hear her with my cochlear implants and still play. And then if I don't wear my implants, I can read the other players lips. So it's not really an issue. So I'm more able to play along. So it's fine. Katie Colella [00:09:00] And I think you should also know Katie played Division one college sports. She was on, she rowed she was on the crew team at the University of Iowa. Katie Farnsworth [00:09:16] What was fantastic about that was we were in a boat, right? So I'm following the girl that's in front of me. So, you know, also just a lot of cues, right. Just in terms of body language, timing, trust in other people too. I think a lot of what I felt with making new friends, especially friends that had normal hearing, was I trusted them, you know, I trusted myself. As you said, you know, your self-esteem has continued to build. And I think that also then allows you to trust other people. And I think that's a life skill that everyone learns. And so I'm so thrilled to hear that you've, you know, been able to, like, find this group of friends, especially at the college level, that you can really, you know, lean on because I think that's what also helps you be successful. Katie Colella [00:10:27] What made you want to go into pre-med at college? Eduardo Venalonzo [00:10:36] Well, I want to learn medicine, medicate medicine, because I want to become a doctor. But I'm just interested in studying science and really been interested in that. So got me into pre-med. Katie Colella [00:10:54] What kind of doctor do you want to be? Eduardo Venalonzo [00:11:01] Surgery. Surgeon. I want to become a surgeon. Katie Colella [00:11:03] Oh, that's awesome. Katie Farnsworth [00:11:05] That is. That's amazing. You know what a good aspiration for you, too. And the sky's the limit. I think so many of our parents, especially as they're facing a new diagnosis of hearing loss for their young child, it's the world's, there's so much unknown, right, about what the future is going to bring for them. And so to hear your story and hear about how that self-esteem and that self-confidence and now, you know, really having just all of the these aspirations for yourself, I think that parents are really going to just really appreciate knowing that. Katie Colella [00:11:53] Do you receive any accommodations at University of Illinois, Chicago, because you have a hearing loss? Eduardo Venalonzo [00:12:09] Yes, I have an interpreter. Also, I have a note taker. Katie Colella [00:12:15] Oh, great. How was the process of getting that set up? We have a lot of families that we work with. You know, we work with their kids from a young age, but eventually they transition from high school to college or trade school or whatever program or job they get. And so at that point, there's a lot of new advocacy that enters their life. And so we really love to hear firsthand what it was like for for you to get those services set up. Eduardo Venalonzo [00:12:59] Like what specifically? What do you mean? Katie Colella [00:13:02] What was the process? Who did you have to contact? Did you have to submit any type of documentation? Was it challenging? Was it easy? We make these recommendations as clinicians to say, oh, you know, contact the Adaptive Services office or whatever it's called, but we love to know what the process is like on your end. Eduardo Venalonzo [00:13:35] Well, in high school, they scheduled the classes. I said an interpreter would be there. But in college, my mother had said in order to get an interpreter for my classes in college, I had to submit documents through email to a specific department to request interpreters for my classes. Katie Colella [00:14:14] That sounds like a pretty easy process then, but. Eduardo Venalonzo [00:14:22] Yeah. Katie Farnsworth [00:14:23] If you are attending college and want to request accommodations for hearing loss or any other need, find the Adaptive Services or Disabilities Office affiliated with the organization. When I attended University of Iowa, I was able to have it set up before I started my freshman year. Katie Colella [00:14:38] I'd love to hear about how your family communicates with each other because I know there's your home with several languages spoken English, spoken Spanish and American Sign Language. Eduardo Venalonzo [00:14:54] That's correct. Yes. Well, we speak Spanish. Sometimes we'll speak some English. But with me and my brother, m,y my sister and my other brother and my sister-in-law, they speak English. And then other speak Spanish with my aunt and my dad. Then there's we use technology of texting with the family and then and we text in Spanish as well. And I'm also trying to teach them some sign language. Katie Colella [00:15:50] What would be your what's kind of your preferred mode of communication? Do you prefer Spanish English sign language? What do you did to kind of dependent on the person what you like to how you like to communicate with them? Eduardo Venalonzo [00:16:08] English and Spanish. Katie Colella [00:16:11] Spoken. Yes. Eduardo Venalonzo [00:16:13] Yes, the spoken. Yeah. Katie Colella [00:16:15] I know. You've gone to Mexico multiple times. How is it traveling to Mexico where you know you, don't you? Well, I guess we should first clear something up. So your mom says that you and Esteban fight about who speaks better Spanish. And we ask Esteban who he thinks speaks better Spanish. And he said him. What is your response to that? Eduardo Venalonzo [00:16:46] Is me. I speak better Spanish. Katie Colella [00:16:51] So how is it when you travel to Mexico? Because I understand most of your family in Mexico only speaks Spanish. Eduardo Venalonzo [00:17:04] It's fine. I can communicate with my family in Mexico. Katie Colella [00:17:08] Have they been open to learning sign language? Eduardo Venalonzo [00:17:13] No, no. Katie Farnsworth [00:17:16] Why do you think it's because it's such a new way of communicating? Eduardo Venalonzo [00:17:22] Well, I can teach sign language with Spanish at the same time as I can't do that because interpreting with English in sign language. And it's not that it's not possible because I don't know what the English signs are. Katie Farnsworth [00:17:45] Like oh for, for, like a, like a, Spanish sign language. Eduardo Venalonzo [00:17:50] So like, you're saying the Spanish words and then the English signs. It's like two languages, same time. Katie Colella [00:17:58] True. I didn't think about that. Katie Farnsworth [00:17:59] I didn't either. Katie Colella [00:18:03] So then you try to use Spanish in Spanish. Eduardo Venalonzo [00:18:10] Right. So, so you're, saying the Spanish word. But in sign language, it's the English word. It's like two languages, same time, because Spanish, Spanish sign language is different than American sign language. Katie Colella [00:18:26] Very different. Eduardo Venalonzo [00:18:27] There is different languages. Katie Colella [00:18:29] That's right. They have completely different language families. Katie Farnsworth [00:18:33] Right. And different structures. Eduardo Venalonzo [00:18:35] Different right. And so every language has its own sign language. Katie Colella [00:18:40] A language family is a group of languages descended from a common ancestral language, resulting in overlapping vocabulary or grammatical patterns. A common example in spoken language is Spanish and Italian, both from the romance language family. American Sign language is actually in the same language family as French Sign language due to a deaf teacher named Laurent Clerc co-founding the first American School for the Deaf in 1817. Eduardo Venalonzo [00:19:07] So if he were saying good morning in Spanish, I'd be saying saying it in Spanish, explaining English. And it's like two two languages at the same time. It is hard. Katie Colella [00:19:22] I did not even think about that, but that makes complete sense. Yeah. Katie Farnsworth [00:19:26] We should leave it to the trilingual expert over here. Eduardo Venalonzo [00:19:31] No, I know nothing about that. Katie Colella [00:19:36] In high school, did you ever encounter any bullying? Eduardo Venalonzo [00:19:48] And I would say I'd deaf and hard, a deaf and hard of hearing boy bullied me because he pushed me. That's the only one time I could remember. That's all. Katie Colella [00:20:03] How did you respond to that? Eduardo Venalonzo [00:20:09] Ah, nothing. I just said, Stop it. Don't push me. Katie Colella [00:20:15] Good for you. Took the high road.. Eduardo Venalonzo [00:20:17] Yeah. Katie Farnsworth [00:20:20] I'm glad to hear it was only one time, too. Katie Colella [00:20:24] You're in college now, which is very busy. The coursework can be extremely heavy, especially for someone in a challenging major like pre-med. Do you ever think about what it will be like for you to take over all those steps eventually when you transition out of Lurie's care? Eduardo Venalonzo [00:20:49] No, I haven't really thought about that. Katie Farnsworth [00:20:53] Don't worry. You have a few years before that happens. Katie Colella [00:20:55] Right? Absolutely. Katie Farnsworth [00:20:58] But it is I think it is, you know, definitely a part of the process, working at work, at working at a children's hospital. Right. Like, at some point, we help our patients transition to an adult facility where maybe equipment support is a little more hands off. Katie Colella [00:21:20] What do you think would make the process easier for you to feel more comfortable to reach out on your own, or I should say easier? Well, to make the process more accessible, to reach out on your own. Eduardo Venalonzo [00:21:49] Well. I could learn from my mom like how she would how she schedules the appointments. You know, I could study that and get that information. And my mom can, you know give me that information and tell me where I need to go and give me the contact information. That's simple enough. Katie Colella [00:22:17] Do you think your mom likes being involved still? Eduardo Venalonzo [00:22:22] Yes, definitely. Katie Colella [00:22:24] That is what I think too, she is so lovely. Katie Farnsworth [00:22:30] But I think that a lot of what we're kind of trying to touch based on, too, is how can we make access? That much easier for our patients besides sports. Katie Colella [00:22:44] What's your favorite thing about UIC? Eduardo Venalonzo [00:22:50] I like my math classes. I really like just math. And it has so far been my favorite classes. Katie Colella [00:22:59] Well, thank you. I'm glad there's somebody. Eduardo Venalonzo [00:23:01] And then also science. My science, my science classes. I'm really learning a lot from that because I'm focusing on that, of course, because that's what my major is going to be, you know, with being pre-med. Katie Farnsworth [00:23:17] Where do you like to study? Eduardo Venalonzo [00:23:20] Where do I like to study? I kind of like to study wherever there's a free, available table where people are. Library is one place I like to go. There is a university hall. I do a lot of my studying also in the classroom, so. Yeah. Katie Farnsworth [00:23:41] With your cochlear implants, do you ever stream music or any, you know, any podcast or anything while you're studying? Eduardo Venalonzo [00:23:50] Yes, I do that when I'm studying, I do listen to music. Katie Farnsworth [00:23:54] How many classes are you taking next semester. Eduardo Venalonzo [00:23:59] Maybe five or six classes. Because each hour I want each hour of the day. Katie Colella [00:24:08] So about 15, 18 credits. Yes, That's a lot. Katie Farnsworth [00:24:14] Yeah. That's a big course. A lot. Katie Colella [00:24:18] So we want to ask you about what COVID was like. When everyone had to start wearing masks to communicate. How did that affect your communication with everyone? Eduardo Venalonzo [00:24:36] Well, during COVID, when people were wearing masks was, um, I just, I could hear people's voices. So I wasn't really relying on lip reading, but it was challenging because of the masks. I would have to ask people to repeat a lot. Katie Farnsworth [00:24:57] And have we kind of already talked about how in high school you were a little more shy, So I'm sure that was also hard on top of it to really advocate for yourself.. Eduardo Venalonzo [00:25:11] Correct? Yep. Katie Colella [00:25:13] Do you think those the masks that have the clear cut out in them are helpful? I only ask because sometimes I feel they fog easily. So I wanted to know what your thoughts were. Eduardo Venalonzo [00:25:30] Well, exactly that. For the interpreters I have them wear that for so I can read their lips. But. Yeah. Katie Farnsworth [00:25:40] And that's frustrating too, because the mask is designed to give you more access. And I feel like sometimes it. It doesn't always work. Katie Colella [00:25:48] What else would you like to share, if anything, about growing up with hearing loss in your lives? Especially for somebody listening who maybe doesn't know anyone who grew up with hearing loss, what would you want them to know? Eduardo Venalonzo [00:26:05] Before whenI was three years old. I didn't know. I didn't even know I had a hearing loss. I didn't know anything. And then afterwards, you know, after getting my implants, it was kind of shocking. You know, my world opened up. And then after years and years after that, things and then getting the new implants and the more powerful implants throughout the years, that changed my world as well as the years went on. Katie Farnsworth [00:26:37] So your worlds just constantly been evolving. Eduardo Venalonzo [00:26:47] Yeah. Katie Farnsworth [00:26:48] If you had to give a piece of advice to a parent or a patient who is undergoing a cochlear implant and they're scared or nervous, what would you say to them? Eduardo Venalonzo [00:27:07] When I was in school, I got a new implant, I was very nervous. Yes, I would say sometimes I would cry, but I, and I was shy. But later, I would say I was okay. I went into class and I would say, you know, everything worked out okay. Then it was hard for me, but but my friends would come up to me that I was still nervous, but they would talk with me. And then I felt that I wanted to be friends and I got to meet friends just to keep going. And, and now I'm okay. And I'm not nervous, you know? And now it's everything's good. And I have friends and I talk with them. And then after and I grew up and there's no problems. Katie Colella [00:28:03] Why would you get nervous to get a new implant? Because I just want to make sure I understand. Is that any time you upgraded to a new processor, it would make you nervous? Eduardo Venalonzo [00:28:18] What? I would just get nervous. I don't know, because I didn't want to show my that I had the implant, I guess. Or I would just, um. I don't know. I was just nervous myself. Maybe because I wanted to hide that I had my implant, but I don't know. Katie Colella [00:28:43] But the unknown is scary too. Eduardo Venalonzo [00:28:47] True. Katie Colella [00:28:49] Do you feel that your access to sound or sound quality has improved every time you've upgraded to the new technology? Eduardo Venalonzo [00:29:01] Yes, definitely. Katie Colella [00:29:04] Oh, well, that's good to hear. Katie Farnsworth [00:29:07] We wish you the best of luck this next semester. Eduardo Venalonzo [00:29:12] Thank you. Katie Farnsworth [00:29:19] While waiting for Eduardo to arrive for his interview, we had the opportunity to talk to Marijo about being an American Sign Language interpreter. You may hear hands hitting the desk or clapping together at some points because Marijo is such a dedicated interpreter and she can't stop moving her hands. Marijo Fiacchino [00:29:34] Hello, my name is Marijo Fiacchino I am a licensed sign language interpreter with the state of Illinois. I have been a sign language interpreter for over 35 years. I currently work at an agency called Chicago Hearing Society, CHS, on which I am currently a staff interpreter. Previously, I was the manager of Interpreter Services and now I currently what I call back on the streets, which I love to be out there interpreting with the deaf clients and being networking with our clients such as Lurie's  and meeting the deaf clients and meeting our customers. Meeting my fellow colleagues, sign language interpreters and reaching out and finding out how things are going. Katie Colella [00:30:28] Can you explain the process one has to go through to become a certified American Sign Language interpreter? Marijo Fiacchino [00:30:36] Sure. Currently, if you are interested in becoming an interpreter, you need to go to an interpreter training program in the state of Illinois. We have several programs. We have four year degree programs and we have a couple of two year degree programs. Once you complete those programs, you go out and do practicum work and then you can sit before a testing body to test your skills in order to work in the state of Illinois as a an interpreter, you need to be licensed by the, by the State of Illinois IDHHC, which is the Illinois Deaf and Hard of Hearing Commission. And they license all those interpreters to work in the state of Illinois. So just because you know sign language doesn't mean that you can go and interpret for people. Katie Colella [00:31:31] Okay. We can tell you work with your hands. You cannot Marijo Fiacchino [00:31:36] Exactly. Katie Colella [00:31:37] Move them while you talk. Marijo Fiacchino [00:31:37] Exactly. Katie Colella [00:31:39] I met a young woman yesterday who works at the Morton Arboretum, who is working towards her American Sign language certification. And she said she did everything but take, I believe, the final exam. And she's been waiting because of COVID. Marijo Fiacchino [00:31:57] Correct. Katie Colella [00:31:58] COVID shut it all down. And can you, can you talk more about that? Did it shut down the options to take the exam? Marijo Fiacchino [00:32:05] Unfortunately, due to COVID, the testing facilities had to put on hold the ability to hold administer those tests. There are, there is the BEI test that's held here through the state. And then there's our national testing body called the Registry of Interpreters for the Deaf. Already that does have testing as well. And they both have been either slowed it down and or put on hold due to COVID because you can't couldn't meet during the lockdown. Now they are holding those testing again and scheduling those tests again. Unfortunately, there's a big backlog. So now there's just people waiting for appointments to take those test as well as there's a long waiting period to find out the results if they've passed those tests. It's very frustrating because there's not enough interpreters. We need more interpreters. Katie Colella [00:33:10] One more question. Our family is here? What is the most exciting interpreting job you've ever had? Marijo Fiacchino [00:33:20] Oh, I've had a lot of exciting interpreting jobs. Katie Colella [00:33:23] Or your favorite whatever, you want to talk about. Marijo Fiacchino [00:33:27] I've gotten to interpret for many famous people in my career, including those, former presidents such as Bill Clinton, Barack Obama, and most recently, I got to interpret for the former first lady Michelle Obama, which is pretty cool. Katie Farnsworth [00:33:47] That is so cool. And I'm just in awe of, of your accomplishments. And I think that, you know, American Sign Language is something that a lot of people have a hard time grasping. And I think even though it's become so much more mainstream, you know, that it kind of just I feel like we're seeing it more and more in the media where there's the interpreters in the corner of the concerts, right where they're just at the beat, you know, or they're in a classroom. And I think it's it's really good for listeners to hear about just how widespread this, this profession goes and how many different people that you reach. Marijo Fiacchino [00:34:27] Well, exactly. And I think the important thing about this is that we're providing access for the deaf community. So it's, it's more than just the interpreter being in the corner, you know, you know, interpreting, you know, crazy music. But we're actually they are providing access. Someone requested those services. You'd be surprised that people are asking to have an interpreter at a K-Pop concert. So and then also people requesting to have interpreters for their doctor's appointments, for their classrooms, for, for access to information. And we're providing a vital service during all that public information that was shared during COVID, during all these disasters. That's why those interpreters are there, because the deaf community, the deaf blind and hard of hearing communities need that information just as much as we do as hearing and sighted and hearing people. So it's a valuable service that we're providing. And I think that's that's, we have to remember that we're providing the service for our deaf community. Katie Colella [00:35:35] Yeah. Katie Farnsworth [00:35:36] And it's just one of the many things that the Chicago Hearing Society provides to correct. Marijo Fiacchino [00:35:40] We have a lot of services, social services like domestic violence, we have youth services, we have a free tax program that we provide. We have a full audiology department, just to name a few. A deaf blind program. We have caseworkers that go out and find out deaf blind individuals that are isolated and let them know that their services and equipment out there for them. So yes. Katie Colella [00:36:05] And how does a family access resources from the Chicago Hearing Society? Marijo Fiacchino [00:36:10] The best way is to reach our website which is www.Chicago Hearing Society.org or you can call our phone number is 773-248-9121. Katie Colella [00:36:32] Okay, this is it. Our last two for two of the season. Two Katie's two questions slash observations. This time. I'm going to let you go first, Katie Farnsworth, because I feel I am always going first. I'm gonna let you go first this time. Katie Farnsworth [00:36:48] Well, thank you very much. I felt really inspired by this episode. I really because it was it was so cool to watch. And I recognize that our listeners aren't able to kind of see the interaction between Eduardo and Marijo, but to be in the room and feel that we could really have a pretty fluid conversation, even though there was, of course the pause between our question being asked to Marijo, interpreting to Eduardo answering, it really was a pretty seamless process, and I think it allowed Eduardo to truly answer the questions in a comfortable manner and his preferred way of communication. And I feel like we learned a lot about him that way. Katie Colella [00:37:35] Yes, I agree, because I when when this came up that we were going to use an ASL interpreter, I think the question people kept giving, you know, asking was, well, how are you doing that with a podcast? And I think it honestly, it worked out much better than I thought. You know, it definitely surpassed my expectations. And I've never worked with an ASL interpreter in a that for that long in a situation that wasn't for clinical care. Katie Farnsworth [00:38:05] Mm. Katie Colella [00:38:06] You know, we're and you know, because I'm not counting a place where I'm watching something and there's an ASL interpreter present because, you know, this was a situation where I actually had to interact with the ASL interpreter and we, you know, we're very lucky to get someone with such awesome experience like Marijo. Katie Farnsworth [00:38:23] I totally agree, you know, that she really opened up my eyes to just what what a really good fluid interpreter can do for an interaction. And I agree. I think there was a little of hesitation about, you know, how is this going to go with the podcast? I felt I felt it was really seamless and I was really happy that we could interview Eduardo and have him feel comfortable having that conversation with us because I feel like he has a lot to share. And just because his mode of communication is different doesn't necessarily mean that we can't get to the bottom of, you know, how he's feeling. Katie Colella [00:39:03] Absolutely. Okay. So I guess mine's the half observation, half question. Well, I loved it, I loved how he talked about coming out of his shell when he transitions from high school to college, because I think that's a truthful statement for a lot of people. But it did make me wonder, you know, how can we how can we get more teen support out there for teens with hearing loss? You know, how do we connect these individuals with these you know, with these similar experiences to maybe help them have deeper connections at that younger age? Like Lurie, we've had the teen groups through our Sound Experience, it's program. But like, what do you think? Are there other ways we can get these teens connected? Katie Farnsworth [00:39:53] You know, we also have that we use quite a bit in our on our cochlear implant team as well as is PeerWISE. So we have ParentWISE for the parents to be able to interact with each other. But we also have PeerWISE where patients who have cochlear implants can also, you know, be able to talk to other patients as well. And that is also something that's available for through several of the cochlear implant manufacturers as well, where there are actually recipients on call to be able to talk to families and talk to patients directly about their experience. And I think that, you know, that is such a great resource because oftentimes, you know, if we're implanting a child a little bit older or maybe a teenager is going through a tough transition, you know that there there is another person who potentially had a similar experience and being able to talk about that. You know, I think that Facebook and social media can be a great place to I think it's it's a lot to sift through with finding the right kind of connection if a patient is looking for support. So I do feel like that that peer wise program through Lurie's, is remarkable as well. Katie Colella [00:41:06] Okay. I do not know about that. I'm not you know, I'm not on the implant team. So that is that is a great resource. But you said it's also connected with the manufacturers. So.. Katie Farnsworth [00:41:16] Yes. Katie Colella [00:41:16] It's a way for other clinicians to tap into that? Katie Farnsworth [00:41:20] So other clinician can tap into that. And that's obviously not specific just to Lurie Children's. And I also think, you know, just word of mouth as well. You know, I think that the world is a pretty small place. And the more that parents and kids can just kind of seek out other, you know, camps, there's there's there's so many different resources in the community as well that just with a little bit of digging, you can really find, you know, you may just find that little golden nugget and find that connection that really just makes all the difference. And I think for Eduardo, it's kind of happenstance that he walked into UIC and kind of met that group of kids that actually didn't have a hearing loss. Right. And he just felt so safe with them. And that, I think, is also remarkable because I'm sure he felt such a sense of being reassured that, you know, even though he has a hearing loss, he's able to make connections with people who don't and feel a a bond with them and a relationship with them. You know, as he kind of looks long term. Katie Colella [00:42:26] That's a good point, that it was with a group of kids that they don't have hearing loss. And so I think it's maybe just every kid, every teen probably needs an opportunity to step out of their world that probably feels small and suffocating and that teenage angst we all go through. Katie Farnsworth [00:42:46] Yes. Katie Colella [00:42:46] And like, broaden their horizons. Katie Farnsworth [00:42:49] Yeah. And I think it can be a really I mean, I remember that it's an uncomfortable feeling. I mean, I remember going to college, right, Like a fresh start. But it's also a scary start. It's a scary start for anyone, regardless of their hearing status to dating to you know, there's there's just so much that you're trying to navigate. And I feel like the chances of having other friends who also have hearing loss depending on what kind of school program you were in, if you were in the mainstream, it's very likely that you never had another kid in your class who also had a hearing loss, or for some of these kids where they are now, have transitioned from a total communication classroom to a more mainstreamed college program. You know, the likelihood of running into another student who has a hearing loss is is low. So being able to kind of work on those self-advocacy skills to be able to make those connections. And I think that's something that as clinicians can work on too, you know, to help these kids develop self-advocacy. Katie Colella [00:43:50] Agreed. Katie Farnsworth [00:43:50] You know, not just in the classroom, but then also within our, you know, I mean, within our office as well. Katie Colella [00:43:55] Agreed. Katie Farnsworth [00:43:56] Yeah, right. Katie Colella [00:43:58] Well, I can't believe that's a wrap on season two. Thank you for joining me this season as co-host. Katie Farnsworth [00:44:05] Oh, and oh, my gosh. And thank you so much for all of the work you have done. This is this has been such a pleasure to work with you and I'm so excited for this season. Katie Colella [00:44:15] Yeah, me too. And you may have all heard my four year old in the background on this interview. So thanks for, you know, taking us as we are a couple moms trying to podcast, a couple of audiologists too of course but yeah until until next season. Thanks for listening. Katie Farnsworth [00:44:33] Thanks for joining us.]Amplified, presented by Lurie Children's, is co-hosted by Katie Colella and myself, Katie Farnsworth. Written and edited by Katie Colella. Tech and Website Support by Katie Fanella Artwork by Katrina Garagiola. Special thanks to the Venalonzo family for sharing their story along with Beth Ternus, Dr. Nancy Young, Tatum Fritz and Marijo Fiacchino. We are grateful for the continued support from the Department of Audiology. Follow us and amplify the story. One word, no spaces. Transcripts are available at LurieChildren's.org/Amplified. If you need resources regarding childhood hearing loss, visit LurieChildrens.org/Audiology-Resources.

3. 

   1 Jun 2023

   Season 2, Episode 1

   Maria share her struggles with accepting Eduardo’s diagnosis and his journey to his first cochlear implant. Guest Dr. Beth Tournis discusses her career as a pediatric cochlear implant audiologist. Episode Transcript Katie Colella [00:00:00] You're listening to Amplified presented by Lurie Children's. Transcripts of this and all episodes can be found at LurieChildrens.org/amplified. Welcome back to Amplified presented by Lurie Children's. The podcast about growing up with hearing loss. My name is Katie Colella, a pediatric audiologist at the Anne and Robert H. Lurie Children's Hospital of Chicago. Last season we followed fellow pediatric audiologist Dr. Katie Farnsworth journey from her hearing loss diagnosis at two and a half years old to present day. Katie was such a natural storyteller during season one that it only made sense to make her a permanent part of the show as a co-host. Now the podcast about growing up with hearing loss will have a host that actually grew up with hearing loss. Katie Farnsworth [00:00:48] That's right. I will be joining Katie Co as co-host this season. Together, we search for a new family to interview with our Lurie Children's ParentWISE program. ParentWISE pairs caregivers whose children have received new diagnoses or recommended interventions to volunteer families with similar experiences. It's an opportunity for parents and caregivers to get answers from others who have walked the walk. That's how we found the Venalonzo family. Maria Venalonzo has been an active and passionate member of ParentWISE for years. She has a unique perspective of raising not one but two children with hearing loss, both with different communication styles. We first met Maria in person after weeks of corresponding via email and phone. It wasn't until we started talking that Maria realized I was the same Katie from season one. Maria Venalonzo [00:01:30] I never made the connection. Wow. That's. That's all. Katie Farnsworth [00:01:35] And so thank you so much for taking the time to share your story, because I think so many listeners want to hear about another perspective. The first season of Amplified was about a particular family back from the early nineties, and so it's nice to hear a couple decades later what it was like. And also, you know, all of the navigation that you guys had to do, you know, for both boys. Maria Venalonzo [00:02:05] Boy, its a lot of work. It is. First of all, I got once or when like I wasn't ready for that. So I didn't know in the beginning, I didn't know was that mainly when they didn't pass that the hearing. When the doctors told me, "Oh, he didn't pass the hearing test." and I was like, "Oh, okay, so what does that mean?" So they they told me, "Oh, you had to come back like two weeks later to do that again." And then we did go back and then so they didn't pass it and they were like, "Oh." So for me it was like nothing, because I didn't hear him. I didn't see him cry. I didn't feel like the he was like, in pain. So for me, we're like, okay. So when, I was working at the time, so I had to enroll him in a daycare. That the daycare teacher had a hard time to to get the attention from him. So I like, "Oh, it's okay, he's just a baby." And then I didn't realize how bad he was. So like he was, I think like 11 months when we start to worry about it, because that teacher from the daycare, she was refusing to take care of him. And I was like, "Why?" He say, "It's because he's not getting attention from me. Everything, when I tried to talk to him, he was like not responding. So it's getting harder and harder for me to, you know, to give directions." And I was like, "Oh, but he's not doing that like that with me. He's okay." And the reason is because I always carry him. I was like, hugging him. I was like, giving attention to him. And he was the only baby. And I was like, oh. We got two older kids with hearing that normal. So it was everything was like playing around with them. So but we noticed that he, he wasn't speaking, he wasn't doing any sounds. And I was like, oh, maybe, it's, maybe this is the reason the teacher was worried about it. So but then it's not. So after that, like one of the teachers I mentioned to me about the hearing aids, and then I said, "What is that?" They said, "That's gonna support him to hear." And I was like, "Oh." And what I can give is that you had to take him to the pediatrician and he's going to refer you to the specialist. And I was like, I was too much work. Like, okay. But I did it. So for any reason, I did it. So we're, like, curious to find out about, like, what's going on. So when they send me to the specialist, they've made that ear molds. Katie Farnsworth [00:04:53] Ear molds? Maria Venalonzo [00:04:53]  Yeah. And then they did it right away, and then they, they give him the hearing aids. But it wasn't enough for him. So the specialist, the audiologist told me they, "Oh, the only way we can fix it is to get the surgery." And I was like, there was like something more bigger than I thought. I was like, "What are you talking about? Why my baby going to have surgery, he's so little." And I was like, "Oh, no, I don't want my baby to hurt. And then especially in the head. So no, no, no way is no way they are gonna do it." So I let the time go. But it was like something inside of me. They were like, wondering what are going to be his life without hearing? How it's going to be his life without talking? So I like so he was like something like it wasn't like right. So I start getting more information and find out about it. So we made the appointment for the MRI, so he got all the tests he was about like to happen it. And then I was like, "No, I feel like something is not right." So when I shared the story with my with my coworker, she told me, I said, "You know what is a good hospital?" Because the beginning, the first plan, the first time, it wasn't Lurie. So I was like, "No, I don't feel right. Something is not right." When I told when I ask more questions about like, how is it going to be the situation, what is the process, and then what's going to happen up there to the cochlear. And she never mentioned to me about speech therapy and I didn't know about this. So it just feels like it was a miscommunication between. And then she didn't explain me everything, like how was she supposed to. And then so my, my coworker mentioned to me about the Children Memorial now that time it was Children's Memorial and Lurie. So they she mentioned me that and I say that's the right place to go and take your baby. When I met Miss Beth, so she explained everything to me. And at that time it was like the speech therapist, oh, and they referred him like right away to do speech therapy. And I was like, "Oh, so I feel like I'm in the right place now, and I feel comfortable and I feel like, like a connection." Because every time when I was having a question, so I was having an interest and then it was like a lot of support and there was like a lot of help. So when they mentioned me and then we got the meeting or your son, he needs the surgery, at that time it was only candidate for one side. When I say so, I was like, okay, so what's going to happen? He said, "Well, we this is the process that we're going to do for the surgery. And then now he's gonna continue to the speech therapy." And I was like, okay, so, but my husband and he say was then like he was like, so negative about it. So I like, oh so, now I had to work double with this. So at that time it was like families getting together, like family sharing their stories and be and people with cochlear implant like talking. Katie Colella [00:08:14] Maria is referring to Sound Experience. A Lurie Children's program started over 20 years ago by audiologist Dr. Joy Ringer and parent of a child with hearing loss, Sally Wolford. Events are held roughly every other month to build community for local families of children with any type of hearing, loss, hearing device or communication modality. Maria Venalonzo [00:08:36] I'm like so emotional, I like, “Oh my, oh my God, my son is going to be like that.” So like one day he's going to be like that. I talk to my husband, I say, "Look, this is what are we gonna do." And then he said, "But I don't want it." I was like, "I know you don't want it, but it's going to be good for him. And then like, “It's going to hurt us. But just think about it. One day you're not going to be there for him. And then he has to, you know, he has to go out, he has to go to college, he has to go to school, and then you're not going to be with him 24/7, so we need this." He was like, "I don't know. I usually don't feel like that we have to do it." I say "We had to do it and we're going to do it." And I was like, "I already decide to do it with or without you do the decision, because I feel like this is the best that we can do for him." Katie Colella [00:09:29] That must have been a really hard conversation to have. Maria Venalonzo [00:09:31] Yeah. Katie Colella [00:09:32] With your partner? Maria Venalonzo [00:09:33] Yeah, it was really hard. So I like, so he wasn't like 100% sure that was going to work because he... one day he was like, "How about it doesn't work for him?" I was like, "Just think positive and all those good things going to come up, but you keep thinking in that way, so that's not going to work." So we start already. We start the process and then we start working and preparation. So when the happened, the surgery happened, so we were together there. It was a pain, you know, in between, because seeing your baby there. So it's not fun. We left the hospital the same day, so he was like, "Let us take care of that." I took some time off from my work in the night. I think it was two weeks at that time. And then so the third week when we were supposed to be go back. So we went back. He was so emotional. That day. I remember when they they, they connect the cochlear to him and he was, he was amazing like, let's see him like calling his calling his name. And then he just turned around like, "Oh my God." He was like, it was a miracle then. So I saw my baby for the first time hearing me. And then I was like, he was like, it was so, so, so, like, emotional that day. And then so I said, "Yes, I'm Mommy, I'm your Mommy." And then and then he turned around with my husband, he was like, like looking at him "I said that's your Poppy." And then for the first time hearing his voice, he was like, it was so, like, so good. Katie Farnsworth [00:11:22] When a cochlear implant is activated or turned on for the first time in children who have heard little to no sound in their lives, the responses can vary. In my experience, some kids demonstrate the great AHA YouTube moment and others do not react at all. After a long emotional journey, it was heartwarming to hear Maria witness Eduardo's undeniable detection of her voice. Maria Venalonzo [00:11:43] And then after that, like we start working in the speech therapy. So he's he's very smart. He's so smart the boy. And then so every time we were taking turns, my husband was attending to some therapies and I was attending another therapy because we get involved. It was another community program that we involved and they were teaching him sign language and there was a Lurie giving a speech therapy. So and then after that it was a school involved too. So it was like, okay, we had to like cut a little bit somewhere with it because in our schedule it was like, so time.  And then so when we when we decide to enroll in the school, it was also like a frustration there because it was at the time start school and he was a the surgery. So it wasn't enough time to to let him allowed to like to share that like this situation he was in between. So the school day wasn't like want to deal with it. And they they sent him to only sign language school. So and then in the beginning it was like hard because I, I like stand up and I say "I don't want my son be in only sign language for school because it's not point for me to get the cochlear implant unless in the day not that they he only want to learn sign language." I say "That's in all their program they it has to be." So they told me they was a thorough communication program but he wasn't feeding in the in the right way because he wasn't speaking anything, any language, not even Spanish name in English. And then he you start learning like some words and then he didn't fit. And I was like, "Oh, I don't know. I don't know about this one." I don't have a lot of experience because I didn't I didn't know. It was my first baby with hearing loss. So I like, okay, so what what do I have to do? So I shared this with Miss Beth and then she told me, "Oh, you know, is a person if they see that's the that was her name." Katie Farnsworth [00:14:11] Maria is referring to Stacie Simic, the former education liaison for the cochlear implant program at that time. Maria Venalonzo [00:14:17] And that was supporting the schools. And I was like, okay, so she she's the right person to talk to. So I, I talked to her and then I explain her was the situation. So and then I told them I want him in program like through communication. So she worked in the she was with the CPS and then CPS has a little bit like you know they met that they they sometimes, I feel like they didn't want to deal with them. But I told and I "We don't get the opportunity, you'll never know." Because things happen all the time but if they hear and are ready you know like, we just have to work a little bit more harder. But it did happen. So he wa thorough communication and that helps a lot. Katie Farnsworth [00:15:10] I would love to ask some questions about at the beginning after he was diagnosed with his hearing loss. So I know you mentioned that his day care teacher was also expressing some concerns to you. Did that then lead you guys to do some follow up testing with his hearing loss? I know you mentioned he went to get some ear molds and hearing aids. Did he have another hearing test at that time? Maria Venalonzo [00:15:34] Yeah. When, when we the pediatrician refer him to the specialist, they did the the hearing test again. And then so, they told us that his hearing loss, it was like very profound. He was hearing acting like you were hearing like 100%. He was hearing like 25% or less in there. So he was hearing they say they were, hearing like like very, very and loud noises like a blender. So there was the blender that was always like using, right? But other than that, they said they wasn't hearing like us, in especially like we talked like. So he couldn't be able to hear. So I was like, okay, so that was the diagnostic that they gave us to us. So when we went to Lurie, they did the same tests and all that. So but we were already having experience from one hospital and to the other when we was already know what was going to be the situation. We only waiting for to tell us that he needs to speech. We wasn't ready for for the surgery because in our head we was like wondering like there was miracle is going to happen tell us that like everything that has been done was like wrong. So but when we found out they it was the same diagnostic. So I like, okay, so and then we were we start working on. So he was like around 16 months when we really start working. So the I think that um, the time that there has to be preparation for that surgery or so, like he was like, teen eight months, something like that. So he got the surgery when he was two days after he turned three years. It was December 19. His birthday is December 16. So he's he got the cochlear. And then three weeks later they did the activation. So and then when he start hearing and it was like really, really nice. After that, like, you know, like he went, he got implanted and December 19, that's a six. So he was already three. And then we enrolled him in in school in September. He got his surgery in December. So at that time it was like February. They don't want to deal with this. So in there's when we start like working again with the schools. So but he get it, he get them the program it was the school he was in Hyde Park. So he was, we live in the in West Chicago, in the schools in East Chicago. So he was driving from home to to that school. And there was like speech therapy. So we was like pulling out from from mom, from school or we were dropping out play. So that was like the situation there. It was only one kid, so it was more easy. Katie Colella [00:18:51] Over the course of this season, Maria will share more about how she navigated the educational system and advocated to get her children appropriate services. But despite her boys attending multiple schools and working with several therapist over the years, one person on her care team has remained constant after all these years. Maria Venalonzo [00:19:10] When when he got that, every time where he updated his devices is something different with him, I don't. I don't understand. Sometimes I don't get it, but it's a little bit more when when we switch from one one thing to another thing. They traveled to Mexico before the pandemic and there was something really weird. When he came back, he was having like some issue with his one of his devices. And then I so later around it got fixed by itself. I don't know, like maybe I can I say Miss Beth has to do something with this. But yeah. So it was like, okay, so it go away. Katie Colella [00:19:55] That constant has been her audiologist and our colleague, Dr. Beth Tournis. Maria Venalonzo [00:20:01] And then I was like, so worried about like, "Oh, maybe it's going to start working or it's going to get another surgery." But nothing that, everything gets better. And then now it's just not there anymore so. Katie Farnsworth [00:20:12] Yeah. Cochlear implants are just such an interesting, interesting thing, right? And I think sometimes you can think, "Oh, is it equipment related, Is it hearing related?" And I think it takes a lot of troubleshooting and a lot of support from your audiologist, from the hearing therapist, from the speech therapist. I feel like you've mentioned a lot of really cool people that have helped support you, you know, to help both boys learn to hear and learn to listen. Do you feel like, I think you mentioned this too, kind of your you when you first met Beth, Miss Beth. You know, what was that like? Cause I know you came to Lurie more as a second opinion to kind of be able to move forward with a cochlear implant for Eduardo, if that's what he needed. What was that like? What was it like meeting her for the first time? Do you remember meeting her? Maria Venalonzo [00:21:01] Yeah, I really was like, really cool because she was like a doll. She's skinny doll, but I feel like. Katie Colella [00:21:11] She's tiny. Maria Venalonzo [00:21:12] Yeah, she really is. She's beautiful. I mean, like, I feel like we got a really good connection because she gave me that and she gave me all the answers that about all the questions that I had. Even like for me was like, dumb question. It wasn't dumb for her. So she always like, "Oh, no, Maria, this is the way it works."  And this is always like, you know, it made me feel like a family now. Like I always feel like a family and know her for since they were like my whole life. But and there's a few people that I always feel in that way. Beth Tournis [00:21:53] I'm Dr. Beth Tournis. I have been working at Lurie Children's Hospital, which was formerly a Children's Memorial Hospital since the early 2000 when I graduated. And I have been working on the cochlear implant team since 2003. So for 20 years. And before I worked on the implant team, I mainly did ABRs and worked with kids with hearing aids. And then once I joined the implant team, I was actually the coordinator of the team for about nine years before I stepped back to spend more time at home with my kiddos. And now I'm still just spend seeing cochlear implant patients and working part time for the past, I think about seven years now. So yeah, it's been a journey. Katie Farnsworth [00:22:34] 20 years. That's incredible. Beth Tournis [00:22:36] Yeah, it's a long time. Katie Farnsworth [00:22:35] Happy anniversary. I mean, this is such a huge milestone. Beth Tournis [00:22:40] Thanks. Katie Farnsworth [00:22:40] Yeah, it's so exciting. Beth Tournis [00:22:41] Yeah, it was November of 2000. I always wanted to work with cochlear implants, so there was a position that came open on the team after I had been at Lurie for about two years. And yeah, was November of 2003 when I started. So yeah, crazy. Katie Colella [00:22:53] It must be crazy to think about the first implant you held to what you're holding today. Katie Farnsworth [00:22:59] Oh my gosh, Yes. So when I first started kids, we didn't have their behind the ear processors, which were just, you know, the little ones behind the ear with nothing attached to the body, were just coming out. And they were mainly only being used on adults. And there were only specific brands of cochlear implants that had them. So we worked primarily with two brands at the time, and one of the brands didn't even have a behind their processor. So when I started fitting children, actually we would spend sometimes the first 20 minutes of an initial activation just strapping on a little harness so that we could put the box that was the speech processor in the harness. So literally 20 minutes, the appointment was like getting the kid comfortable and fitting their like suspender things to hold their harness in place so that you could put the box that was the device inside. And it was actually bigger than an iPhone, like the size of the the things that they would wear on their body. And then when we started doing bilateral implants, they would have two of those boxes and that was a little bit further along in my career. But yeah, it's crazy just to think the implants that I was doing at the time were analog, so they didn't sound good at all. You could connect to nothing. And now we're connecting to Bluetooth and apps and it has definitely been the technology, when you think about it, it's pretty mind blowing and just how well the kids do. When I first started, I used my sign language a lot more than I do day-to-day today, because now even if I have kiddos who use sign language in addition to spoken language, most of the time they're still understanding my spoken language and I'm not finding out that I have to sign as much during my appointments. So but when I first started that joined the implant team, I went and signed up. I took sign in college and but I wasn't fluent in. So I actually took classes at Columbia University in Chicago to up my science skills because I really needed them. I first started on the implant team. Katie Colella [00:24:46] Wow. Beth Tournis [00:24:47] Yeah. Katie Colella [00:24:48] So one thing I've loved talking to Maria about is how she frames the cochlear implant process because she gives us such an emotional, it's through an emotional lens, of how she's feeling through every part. But would you be able to simplify as much as possible what the process is like for a family whose child is getting a cochlear implant? Katie Farnsworth [00:25:12] Sure, I will do my best. It's not as simple process as you know, but basically we meet the family as an audiologist. We're kind of their case manager, so we meet them when they come in to our center, where a lot of times the first point of contact for them, if they come from an outside facility like that, that Venalonzo family did, they were actually not diagnosed at Lurie. Or Eduardo wasn't diagnosed at Lurie. I can't remember where he was diagnosed. It was a different hospital in the area. And so they came in for a cochlear implant consultation. And so I was the first person they met on the cochlear implant team. There's a series of appointments with audiology. For most young children, it's about 4 to 5 appointments to get all of the testing that we need. And then they meet a myriad of other professionals along the way. So not just the cochlear implant surgeon, but typically an oral habilitation therapist on our team. At that time, we had a psychologist on our team that some of our children saw and then the nurse to get the vaccinations that are necessary for the surgery. So the social workers they always meet with. So there's a lot of different people that they're meeting as they go along. But the audiologist is typically their point of contact, which is awesome. I think it's really nice to form those relationships with families. But when you first meet them and you're giving them all this information about all these appointments that they're going to have to attend and take off work. And then, you know, some families are surprised that there's therapy afterwards and all the programing visits afterwards. So in the first year a child gets a cochlear implant, there's typically about nine appointments with audiology. So that's a lot. Once they've worked through that audiology process beforehand and we've done all the testing to determine that they're a candidate and the surgeon has cleared them from a surgical perspective and they've had their MRI as they're imaging... At the time we we are also doing CT scans at the time Eduardo got implanted. Then they have the surgery and then they come back about 3 to 4 weeks later to see audiology, to have the device activated or turned on. So those are those videos you see on Facebook of the happy baby most of the time, or the ones that make it on Facebook are the ones where the mom says their name and the kid lights up and smiles. And I always tell families that happens one third of the time and the other two thirds of the time that is not the reaction that you get. That was actually the nice thing when I started practicing in the early 2000s, is you didn't have that pressure. Nobody saw those videos on Facebook and no YouTube at the time. It was great. But now we're there, which is fine, and it does help when you are trying to explain to someone what the processes are like. "Oh, I know what that is." So that's the initial activation appointment. And then they we see their kids typically three and six weeks after that to do some testing and then several times throughout the first year to do testing and adjustments. And then of course simultaneously they're going to weekly therapy to learn how to listen with a device. And then as audiologists, we're keeping in close contact with the therapists to make adjustments. That's yeah, a lot of work. Katie Colella [00:27:57] Simple as that can probably get. Thank you. I think a lot of people don't understand that, what a process it is. You don't just show up and decide you're going to get this for yourself. It's a, it's a thoughtful process because it's a surgical process. Katie Farnsworth [00:28:12] Right. I agree. Every family we meet, we're either recommending that they have surgery or not. So it's not a it's not something we take lightly, for sure. Katie Farnsworth [00:28:19] They also think as a cochlear implant audiologist, yes, we are that first point of contact. But also I think a lot of the really difficult conversations have happened before we even met them, right? Where a diagnostic audiologist has met this family and has confirmed a significant hearing loss. You know, and so I think oftentimes I have families that come in that still have a whole slew of questions, you know, about what the next steps are going to entail. And so I wonder if you have any suggestions for those audiologists who are new to the field or just, you know, have been practicing and maybe continue to struggle with how to counsel these families with more significant diagnosis about like what those next steps are? Katie Farnsworth [00:28:59] Yeah, I think it's hard because you don't know how much that family is able to hear in that moment, right? And I think this isn't what drew me to cochlear implants, but one of the awesome things about only seeing cochlear implant patients is I most the time get to have the happy conversations, right? 95% of my visits are your kids doing great or this is what we're going to do to help this. Like, no, they're not hearing well now, but this is what I can provide you with options versus, you know, when I was when I was a diagnostic audiologist and doing ABRs, most of my conversations were not that way. They were your child has a significant hearing loss. And I think, you know, I do think it's hard. You want to offer families hope, but you also want them to understand that the significance of the diagnosis. I think, is there's diagnostic audiologists that haven't had experience working with somebody on a cochlear implant team or a cochlear implant audiologist. I think it's helpful to reach out to your colleagues just to see if there's information. When we have new audiologist in our clinic a lot of times I'll do like a consult with them or I would when I was in the coordinator role if they had a family with a significant hearing loss coming in. And I think it was helpful for them to hear just a really basic rundown of the this is the device, this is what it entails. It's going to be a lot of work When you go see that person, make sure you bring a list of questions. These are the sites that have reputable information on the Internet. These are the ones to avoid that kind of stuff. So but yeah, I think it is hard. Katie Colella [00:30:16] And I appreciate that as someone on the diagnostic team where it's sometimes so hard to convince a family to take that next step to get to the evaluation. Even though they'll keep coming back to Lurie. But I always I'm trying to say, just do the evaluation. You're not committing to anything. You're you're just learning to get the evaluation. And the biggest hang up is the concern about surgery. Katie Farnsworth [00:30:43] Yeah. Katie Colella [00:30:43] Is that it involves the surgery versus their the hearing aids that do not. Katie Farnsworth [00:30:48] I think so too. And I think, you know, I will say to families because they I think sometimes even when they come in for that first appointment, they're super hesitant. Right. They're like, you could tell they're stressed and they're nervous and they're not sure like, you know what to say. And I always say, you're not signing up for surgery today. In fact, you can do this entire evaluation process. You can meet everyone on our team and we can all tell you your child's a candidate and you can decide then I don't want this and that's fine. But at least you've gotten all the information and you know you can't, um. A lot of times people say, I want my child to be old enough to be able to make that decision for themselves. But by that point, you've already made a decision for them. You made a decision that they're not going to be able likely to learn spoken language. And that's okay, but that you are making a decision by not making a decision. And I think that's what I always try to, you know, tell families. And it doesn't happen as much these days. But I think when I first started, people didn't know as much about cochlear implants. And I used to get asked all the time, like, if my child gets this, can you guarantee that they're going to talk? And I always used to say, "No, I cannot guarantee that. We'll talk. But I can guarantee you, if your child doesn't get this, they won't talk." And so I think that that was helpful to you just to really be candid and honest with a family like, "No, we don't know what the future holds for your child, but this is just an option. You know, maybe opens up some additional possibilities then if you choose not to pursue this treatment." That's why I always try to phrase it. Katie Farnsworth [00:32:12] I love that. Katie Colella [00:32:13] Yeah. Me too. Katie Farnsworth [00:32:14] I think it's really honest, you know but direct advice to families. Katie Farnsworth [00:32:19] And I'm sure I said that to Maria. Just thinking back. Eduardo was earlier on in my career. So I feel like you remember more of those candid conversations and not that I don't remember all my kiddos now, but, you know, once you've done it for 20 years, you may not remember specifics of every appointment, but back then, yeah, he was one of my first. And I definitely remember some of those conversations with her. Katie Colella [00:32:41] And she's been very open about how well you explained all the information, how much she relied on you, because it is so much information. And I think it's, you know, we're in these short appointment times that so much information to give, we worry about patient retention. Do you have any advice for how we can ensure our patients are retaining the information we need them to? Katie Farnsworth [00:33:07] I mean, I feel like if I did, I could really make some money. Katie Colella [00:33:10] Yeah. [00:33:13] No, I think just the typical ways I've worked really hard over the last I don't even know ten years to not say, "Do you have any questions but to say, What questions do you have?" It's a mind change, but it does, I think, empower the family to be like, I should have a question. Or if they do have a question, then not be afraid to ask it. Whereas like I've been at doctors where like, "Do you have any questions? Nope. Good. Okay, see you later." And you're like, "Oh, I did have some questions, but I guess they don't want to hear them." So I try to just ask what questions you have and pause for a beat. I'm not always great about having families explain things back to me, especially because there's so many like technical terms They don't want to like put them on the spot. But I do try to use a lot of visuals. There's a really great picture that has, you know, the cochlea with the cochlear implant inside of it. And it's fun because sometimes, like a family will bring somebody else to a visit. They'll be like, "Can you pull out that picture you showed me when, you know, before they got an implant?" So I do think that that gets through to families. The more visuals we can provide them for sure. Katie Farnsworth [00:34:14] So tell me a little bit about what you remember, because you've been with the Venalonzo family now for quite some time. Beth Tournis [00:34:20] Since the beginning. So I met Eduardo when he was three, I believe he was a little bit. It's so sad to talk about that three years old, but in the world of cochlear implants, three is old to get a cochlear implant, even at that time when we typically weren't implanting kids much under 12 months. And so but he came to us from another facility. I remember meeting her and I remember both her, surgeon, Dr. Young and I were struck by the fact that she, part of the reason she came to our center was because the center she was at didn't provide listening therapy after cochlear implantation, and she didn't know very much about cochlear implantation. But she knew that, like the most important part of a surgery is typically the rehab. And so she was like, "This doesn't make sense that they're going to give my kid this device and there's no rehab." So that was she sought out coming to Children's for that. So kudos to her. What an amazing thing. And so I remember that for sure. Eduardo was a pleasure to work with. He was so much fun. And just testing him and getting him hearing. And then I remember her telling me she was pregnant and then Baby Esteban was born and two boys and they were both deaf. And so do you remember some grief over that. But also she was like, It's cool. I know what to do. Like, I'm going to get him an implant. And then I can't remember how it happened in terms of like than it did Eduardo did get a second side and then ,Esteban I don't know if she talked about this, but Esteban they saw something on his MRI. Did she talk about that and that he couldn't wear a magnet for like the first year? Katie Farnsworth [00:35:51] She did. She she explained a little bit how they shaved the head and put sticker stickers on. But, I mean, you know, she said, okay, So, I mean, really, she just rolled with it. Beth Tournis [00:36:03] She did. Which was amazing. I only had I have only had that experience with one other patient whose magnet had to be removed so she could have serial MRIs because she had she was ill and you had serial memorized her image, her brain, but that kiddo had already had a cochlear implant. So I think it was a little easier to start from scratch with a kid. And it's hard enough to get a kid who has a magnet to keep it on their head in the beginning and then to be able to do it with a sticker. So it's like it's literally like a sticker that you stick to the skin and it's metal so that when you put the magnet on, it sticks to something like, that's how it works. It's a very low tech system and then you have to kind of make sure that you're in the right spot, which also isn't the easiest thing to do with the sticker because it would move and he would sweat or you would swap out it and swipe at it and then it would just fell off. And so, yeah, it was a challenge in the beginning. And then once they finally cleared him to get the magnet put in was when he got his second side. So he also had a delay in between sides. But both boys do well at wearing both devices, which isn't something you always see when you have a delay between implants. And so that's a testimony to the to that family, too, and how much importance they placed on it. And hard they worked on all of those implants. Katie Colella [00:37:16] And I believe then Eduardo got his second surgery the same year Esteban got his revision and second implant. Beth Tournis [00:37:25] I think you are correct. Katie Farnsworth [00:37:25] Three ears in one year. Beth Tournis [00:37:27] Then one year. Yeah, I think you are correct on that. Katie Colella [00:37:28] That's crazy. Beth Tournis [00:37:29] Right? Katie Farnsworth [00:37:30] I know the busy year. Katie Colella [00:37:32] That was way busy.. Beth Tournis [00:37:34] It's a lot. So. Yeah, no, but. But they did great. And when? Yeah, when he had to have, I think we all just thought that he was just going to get a magnet put in. But actually they weren't able to just put the magnet back into Esteban's device, so they had to take it out and put a new one in, which means it doesn't sound exactly the same because if you're even a millimeter off, like it never sounds like when you do a revision, because it's not exactly in the same place in the cochlear, right? So it takes a little bit of like time and training for your brain to adjust again. So yeah, poor kid. I can't remember how old he was. He was little and he was talking and hearing and he went in for the surgery and he woke up and he was hearing completely differently and he couldn't hear for, you know, we had to wait, I think probably two weeks before we even activated it. So that's got to be hard to you as a parent, just, you know, trying to explain to your child. I mean, how do you explain to a toddler that, you know, you're going to have the surgery and you're not going to hear even though you can hear today? So but man, they they went with it and talk about flexible and well adjusted. So that's good. Yeah. Katie Colella [00:38:33] How long, how has that gap shortened from the beginning of your career? Because I remember it being much longer when I was in grad school of I think I was, I learned 4 to 6 weeks. Beth Tournis [00:38:47] Yeah. I feel. Katie Colella [00:38:48] Initially after a surgery to activation. Beth Tournis [00:38:49] We've always been three two since I've been on the team. We've always been 3 to 4 weeks, but I think we were on the shorter side. I also think there's a difference between kids and adults. Adults need more healing time and or at least that was the theory back in the day. And so they would they would do it a little bit later. They would wait like the six weeks I've done them as soon as seven days after a revision, it gets a little tricky. Um, just because you really have to make sure things are well-healed because the the device on the inside can move if you do it too soon and you're, you know, kind of moving, inadvertently moving it before things have really like kind of scarred up and healed on the inside of the head. But yeah, it's definitely the time has shortened the even more than that, just the actual procedure itself. So it's it's going to get lost a little bit in a podcast. But when I first started, they were making "S" shaped incisions, so they would go into the hairline. So instead of just going right now we do like a small "C" just behind the ear. I do nothing, let's be very clear, I don't do surgery, but the surgeon does a small "C" just behind the ear and then retracts the skin and puts the implant in. But when I first started, they did an "S" shaped incision so it would go behind the ear and then kind of zigzag back up into the hairline. And so I still see kids actually saw one last week that come in today, they're like boys with short hair. And you can still see the incision line kind of going up on the side of their head where that where that scar is. And actually before I joined the team, when the program first started at Children's that they would do a big "C" like that was like half the head. So I just had my headphones, like half the head and like shave half the head and then do like a big "C" and like flap the whole thing. So it's definitely that the incision has gotten so much smaller, the internal devices have gotten smaller and have changed from a ceramic devices which broke away more frequently to titanium and silastic like plastic devices. So I've seen like huge changes in that. So which has been great. It's nice that they only shave a teeny tiny bit of hair on some of the kids now rather than when I first started. I'd be like, there's going to they're going to shave like a decent patch. You know, which is probably fine for your you know 18 month old but when you have like an eight year old girl that has to go to school like that was a big deal for some of our patients for sure. Katie Colella [00:41:11] Yeah. Yeah. Katie Colella [00:41:13] Wow. Well, what questions do you have for us? Now that we have to Katie's co-hosting this season, we decided to try a segment called Two for Two. Two Katie's, two questions that we have not prepped each other for ahead of time. To follow up on our discussion with Maria, who's amazing, right? Katie Farnsworth [00:41:47] Oh, my gosh. She was just wonderful and such a cool perspective. And even after a couple of decades, like, I feel like when you were listening to her, it seemed like it was just last week. Katie Colella [00:41:57] Right. Yes. I felt being in that room with her. Like I was there. Because of just how passionate she describes it. And it was a hard journey for her. So it was touching when she talked about Eduardo being activated for his implant. So my first question for you, Katie Farnsworth, is what was it like when your cochlear implant was activated? You were an adult, so a little different. But I love to hear what it sounded or felt like. Katie Farnsworth [00:42:34] Yeah, I think I really related to Maria in the sense that I will never forget Activation Day. I mean, Eduardo was implanted, what, almost 20 years ago? And Maria still remembers the date that he was activated. Right? Like, I will never forget where I was, where I was sitting, where Chris was sitting, where my parents were sitting, where his parents were sitting. And that initial turn on. I was admittedly extremely nervous about being activated because I didn't know what to expect. I didn't know if I was going to be able to understand voices or if I was not going to really hear anything at all, if everything was going to be just really um indescribable. For lack of a better word. And when my first when my my implant first turned on, I just remember everything sounded like keys on a piano. Like the world went quiet. And then I heard keys on a piano and I had my eyes closed, actually, when it first turned on. And when I heard those notes, I remember opening my eyes and my dad was talking. And its like all of a sudden it like dawned on me like, "Oh, wow, that was his voice" And then at the same time it was, "Oh, wow, I have no idea what he just said." So it was it was a pretty cool experience, you know, to be able to recognize that I was understanding voices, but I just didn't know what that meant yet. And so it took, you know, quite a bit of time for my brain to be able to put it together and do some short term therapy, even if it was just at home on my time to really put it together. Katie Colella [00:44:32] Wow. Katie Farnsworth [00:44:33] Yeah. So. And I'll never forget that. Just like Maria will never forget when Eduardo turned around when he called her, when she called his name. You know, it's such a special moment. And but it can also be a very overwhelming moment if you have a kid who is really upset during the process, because I've also experienced a lot and that, you know, and I mean, I've also had several patients have that experience, too. And I think either way is completely normal. And so that's one thing I keep trying to tell parents, too, that whatever happens in this appointment is normal. Katie Colella [00:45:16] Mm hmm. Katie Farnsworth [00:45:17] And that we can build off of. We can build off of that. Katie Colella [00:45:21] Right. There's no wrong way for a child to react. Katie Colella [00:45:24] Yeah. Katie Colella [00:45:26] Just an honest reaction. Katie Farnsworth [00:45:27] Yeah, exactly. So, Katie Colella, I have a question for you. So Maria talks quite a bit about her initial reaction to finding out that Eduardo had a hearing loss. Also, I mean, a similar reaction that she had where Esteban finding out that he had a hearing loss as well. I'm curious, you know, as a pediatric cardiologist and sharing the news to families about their child's diagnosis, what do you think would be your initial reaction if you found out that one of your children had a hearing loss? Katie Farnsworth [00:46:01] In the scenario that I am a pediatric audiologist, I would have felt heavy I don't you know, I would have felt definitely a call missed because I know what to do. And I know I have so many people, so many colleagues who would support me on the way this journey. But when I have thought about that scenario, which I did both times, when right before both my sons went through there, underwent their first their newborn hearing screening of, I feel that I would carry this pressure with me, that they would have to be the models of pediatric audiology success. Even though that's not true, that's not a fair standard for anyone to put themselves under. In a, in a scenario where I'm not a pediatric audiologist, I think I would take the news rather hard. And I say that because when my during my 20 week ultrasound with my younger son, I learned that he only has one kidney and I was a mess. I was a sloppy crying mess because I had I didn't know anything about kidneys, I don't know much about kidneys. And I was devastated. And now looking back, you know, now today he's fine. We know a lot about it. He's thriving. We have our follow ups as needed. But I think the unknown is just so terrifying. And so I can completely understand when families do react so profoundly to these diagnoses. I think a lot of it is you just don't know what's going on or what this means, and all these terms are new. So I think that's how I would have been if this had ever happened to me. And I wasn't an audiologist. Easily. Yeah, yeah. And I'm a crier. Katie Farnsworth [00:48:04] So I am too. Katie Colella [00:48:07] And I'm a sympathetic crier. So don't start crying because I'm going to start crying, you know. Katie Farnsworth [00:48:12] Two of us are going to start crying. Katie Farnsworth [00:48:13] Yeah. Well, next episode we're going to talk a lot more about Esteban and we're going to get to chat with Dr. Nancy Young. So until then, thanks for listening. Katie Farnsworth [00:48:28]  Amplified, presented by Lurie Children's, is co-hosted by Katie Colella and myself, Katie Farnsworth. Written and edited by Katie Colella. Tech and Website Support by Katie Fanella Artwork by Katrina Garagiola. Special thanks to the Venalonzo family for sharing their story along with Beth Ternus, Dr. Nancy Young, Tatum Fritz and Marijo Fiacchino. We are grateful for the continued support from the Department of Audiology. Follow us and amplify the story. One word, no spaces. Transcripts are available at LurieChildren's.org/Amplified. If you need resources regarding childhood hearing loss, visit LurieChildrens.org/Audiology-Resources.

4. 

   1 Jun 2023

   Season 2, Episode 4

   Maria discusses advocating for her boys in the educational system, including through the Covid-19 pandemic. Esteban gets on the mic to share about life as a teenager with hearing loss. Episode Transcript Katie Colella [00:00:00]  You're listening to Amplified presented by Lurie Children's. Transcripts of this and all episodes can be found at LurieChildren.org/Amplified. Katie Farnsworth [00:00:12] Due to childhood hearing loss being a relatively low incidence in the general population, many schools do not always have the resources or understanding of what it takes to provide proper access in the classroom. Last season, my dad shared one story about an individualized education program, or IEP meeting, when I was in elementary school, when administrators suggested cutting some of my services. That was quickly squashed. What was this administrator's justification? I was doing well in school, so why did I still need that support? Besides this incident, my access to school-based services was relatively seamless. Maria would not be so lucky. Maria  Venalonzo [00:00:48] When we enrolled Eduardo in the school and Esteban for Esteban, when it was more easy because we were ---. And then, like Eduardo, I feel we struggle more because we finding like, new things that we don't know. Be honest with you, like the schools they use there to teach. You leave your kid there. So it's going to be there. But if you feel like, "Oh, this is not what I want, not what I asking for." So you had to work. You had to do that work and you had to ask for it. And then sometimes I feel like, "Oh, I had to fight with the CPS all the time." I remember when they, Eduardo got transferred to the school because the school there wasn't when, they were having through communication, but it was the when they said we were not going to leave behind the other kids because of Eduardo. And he's not doing a good job over here because he needs this program. And I want to let you have it over here. So I'm like, okay. So they transferred. I went to the transfer him. They state to me it was a through communication. And then I say, okay, is through communication okay? But he was more signing then speaking. So I was like, okay. So when I went to drop off my son and I remember that day like yesterday, and it was like the classroom, it was more kids with different disabilities and he was the only one would making more sounds. So I was like, "Why my son is in this classroom?" So I went right away to their office and talked to their caseworker. And when I when I talked to her and I said, "Why my son is in the classroom?" And they they state on me "oh because this that one they we chose that he can be a perfect fit." And I was like, "But it's not what I want." So and then she's says "Ma'am, you signed up for this one mean, not too long ago." And I was like, "My bad. I didn't know what to do. I mean, I thought it was going to be different how I like, but I don't want that program for my son." He was in at that time, he was working for the second implant. I went "I am sorry, but it's not what I want." So they told me, "Oh, boy, you sign up for it" And what? "Yeah, but I can always change my mind. "And then. And then she say, oh, and then she told me, I say, "You know what? I need that phone number for, for the director." And then so she was like, kind of like, cool down. And then she'd say, "Ma'am, do you know how much work is to put all the team together?" I was like, "Yeah, I know. Probably like, I'm not in your place, but I'm in the right place that my son is not work is not going to be a beneficiary from this program. Maybe you don't know, but I'm working for the second implant, so it's not what I want. And so sorry, but you have to find the right program for my son." And then she told me, "Just wait for my call." So I got explained to her like I was gonna go through in order that she understoond me. And she helped me a lot. So again, we did the meeting. So. And then she told me, "Oh, I found the right program for your son." I was like, "Okay." I said, "That's three schools that he can only go." And I was like, "Okay." So he went, she told me when it was like close to airport O'Hare and the other one, it was like all over Northside. And the third one, it was in Hyde Park. And I was like, okay, so. And I this I him I decide to to send him to Hyde Park and then we're like, okay so he goes to William Ray Elementary School. That's the school. And it's a great school, a beautiful school. And I was like, okay. So I felt like he was in the right place. Yeah, but they didn't tell me they up the third grade is a start sharing class. They were like, third and fourth grade. So I was like, "Oh, no." So they, they told me, well, this is the problem. And then Eduardo at the time he was getting so confused and he saw was good in his grades. So he dropped his grades really badly. So were like, "Oh, what's going on?" So he was bringing home like homework from fourth grade. So what was going on? He say "I don't know is what I copied from the that board." And I was like no but this is fourth grade. So he was like, "Oh."  I was like, what's going on? So I went to the school and I talked to them and I said what's going on? And they told oh up to third grade we sharing classrooms, is third in fourth grade. I was like, They never told me these one. So I was like oh no. So I had to start looking for another school. So is when Staci told me about and Beth, told me about Children of Peace. So and then I was like, okay, so I don't have that much money. Yeah. So like, so they told me, "Oh, this always helps." So and they were like, okay. So I went to I went to work in this one. So when I talked to my husband, he was like, "Oh no, it's too much money." Like what is going to be good to where maybe we can work a little bit more. He says more? I am like "Oh, like, come on. So we we got these, we got these." And he was like, "You always say this when we struggling." And I was like, "So what I going to do?" So at that time I quit my job because I was like, it was too much for therapy, doctors and all this that. So and then they were give me a hard time in my job. I was like, I had to quit. So I'd like to know where. I'm sorry, but you know, "They you could be working here for many years." I say, "Yeah, but I need something else." And I start working at my job right now. I even got an -- so I had more money, so more time for my family. What I did with transfer, Eduardo and Esteban at the same time, to Children of Peace. But again, that's only through communication. It was a small classroom. There was like, good for them. So Eduardo graduated from Children of Peace and the pandemic come. It wasn't a lot of support for for for them. They were, like, struggling with hearing. And then I like what are we going to do now? So when they were having a class thrugh zoom, it was good. Everybody was good. But when they went back in in, you know, they the issue, when you get infected, you have to quarantine. So it was it was so hard for Esteban and not for Eduardo, but because the peers like came like they went back later. But he was for Esteban. So when the teacher was in front of the the monitor, he was going to be able to hear well. But when the teacher was walking away, it was hard for him to like to hear. So were like, "Oh, no, so what are we gonna do?" So I explained it to the teacher, explained it to the principal, and then they told me, "Well, this is the situation that we have." And I was like, "Yeah, but I don't want to have a kid in the home. Frustrating. Go to bed early." And then I. So I was like, "No, I don't. I mean, what are they going to do? What is the support for them?" She was like, "There's nothing. We really don't have nothing. This is the pandemic that we got, you know, we got to everybody."And I was like, so. Katie Colella [00:09:05] Did the boys struggle with masks and hearing people with masks. Maria  Venalonzo [00:09:09] Yes. Katie Colella [00:09:10] That must be hard to watch as a mother. Maria  Venalonzo [00:09:13] Yeah. So I like okay, so what I did is it was crazy. It was really crazy. So I like I talk to I involve myself in that church in the beginning of the pandemic when they start opening because we already got COVID and the beginning. So I was like, okay, so I'm good for this one. So I got it. Like I had to help. And then I met a lot of interesting people there. So one of the it was a the, the coordinator for the school. And then so I talked to her at the time and then I explained it how was my my situation with my kid. So and she told me "Why you don't you brought your kid in the school? Is my neighborhood school. So why you don't brought your kid over here?" I was like, "I don't know. I'm so scared because you guys don't have the program. I always I always wanted my kids to go to the school, but you guys don't have that program." And she were like, "But give the chance, you know, like, maybe like, I don't know. You. You feel like he's not doing good. We sent him back."  And I'm like, "Are you sure?" Well, they think its the right thing. They said, "Well, try it. You know, you you don't lose nothing. Just try." And I was like, "I don't know. I don't know." But I, well, I, once I always look in my son like, so frustrated. And the other side was like, you know, this is my option. So I did. So I enroll him, I transfer him. And it was the beginning of the year, so it was nothing like to lose. So he was more happy but he struggled a lot with his, his grades because he say, "Oh I'm not understanding the teacher at all." So the speech therapist came through through the through the zoom and then I saw I mentioned to Beth and then so she she activate the microphone. Katie Farnsworth [00:11:03] Maria is referring to remote microphone technology, an option and where the teacher wears a microphone that transmits their voice directly to a child's hearing aid or cochlear implant via a receiver. This helps amplify the teacher's voice above all the surrounding background noise. I used one all through elementary and middle school. Maria  Venalonzo [00:11:21] So it was a lot of support for him. So I was like, "Okay, Esteban you got this one, I know you're so smart and you're going to get this one." And then like, "Tell me what I need to help you with and then whatever, you struggle just tell me and then I'll help you." And then he said "my grades." I was like, "What do you need?" He said, "I don't know." So I spoke with every single teacher. And then because he was the only kid with cochlear implant teachers willing to spend 30 minutes with him a day. Just to him to pick up his grade. And then because I told him "If he don't pick up his grade, I had to transfer him back to the to to the program." Katie Colella [00:12:00] And what's which school is this you're talking about. Right now? Maria Venalonzo [00:12:02] St. Agnes of Bohemia. And then, so they, they support him as much as they can. So he's he got a good grade, up there like three or four months, he picked up his grades. And this happened with all the support and it was a regular program. Not, special program. He still got the speech because I never, never let my kids without speech therapy. And I always ask, "Oh, this is going to be a speech therapy with them."  And then I and then I say, "Okay, so." They support him and he's got a good grades. He graduate with good grades and graduate from that school St Agnes of Bohemia. And then he went to he he was he went for the placement tests for private schools and he went for placement test for CPS. He passed both. So now he was having options. And I was like, okay, Esteban, you got this. He graduated with two scholarship and then he went from ?? high school. And then like they don't have the program, but they had a support accommodation and he's doing really good. And this is one of the things, I don't say that Eduardo is my smart boy, now he's in college, he's 18, 18 years old. I don't say it's has been easy for him, but I hear he's very smart and they're like, I feel like he's provoking him to it because he is always "I am a smart boy." And he my other kids always told him, "Oh, you are the one going to take it us from the struggle Eduardo, so you better keep it up." And then so Esteban is really good at school. And in between he was getting bullied, Esteban. I never cared about Eduardo. And maybe cause he always went in a program with the hearing loss. In the hard of hearing program. But I know Esteban, Esteban be more exposed in regular programs. It that I say I never treat my kids like that you are special they're they're normal kids from I always told them that so when he told me that he was getting bullied, I told him, "You got this, you got this. I give you a week to talk to somebody in your school. If you don't do this I gonna show up and I going to talk to them." And he was like, "But they gonna call me chicken. All these names." I don't care. "They don't feed you, they don't pay you school, they don't buy you clothes today." they said no. Okay, you got this, better go and do it. He did. He opened it with two teachers I think one of them. But they got fire then the following week so and then I said oh. Katie Colella [00:14:59] Oh no. Maria  Venalonzo [00:15:00] So I like so what are you gonna do now? He said, "Okay, so you want me to talk to the principal?" Because the principal of St. Agnes of Bohemia, she was a principal, she was assistant and now. As principal, but it was principal assistant, but she was a principal in the, his previous school so he, she knows him since he was little. So and then so I told her, but go and talk to her and then she wanna know how well I practice what she's going to say. I will like you'll find out. But I tell you already. You don't go, I go. He was like, "Okay, Mom." So he went and talked to her and then he come home he got a smile. I said, "What happened? I talked to (principal)." So what happened? "So she say not to listen to those kids. They're so jealous of me because I'm the best player in the team and I'm the best in the school." I was like, "I told you, I told thats good." He said, "Well, I feel so sorry for those kids. They're so jealous of me." As I said, "I told you." Katie Colella [00:16:08] It's fortunate Esteban's bullying situation was resolved amicably. According to stopbully.gov, contacting the school is the first step. However, if your child or someone else you know is in need of immediate support due to feelings of hopelessness, due to bullying or any reason, call or text. 988. For deaf and hard of hearing individuals who use a relay service dial 711 then 988. Support is available 24/7. Maria  Venalonzo [00:16:40] But the thing is like you kid always going to be in some situation but is depend of us. How you going to manage those things? And I told him you are not special. You are the same kids. So I always try to make I know inside of my heart I alway feel so painful because I feel like I push him too much. But otherwise that I don't want my kids feel weak. I don't want my feel, feel like all they are better than me. I don't want my kids to feel like they they they're not going to get and I've got not gonna confront any situation that they're going to have. I want them to be strong and then as strong as the other ones, no matter what, like with struggling once type of life. And then I will just have to keep going, you know, like shake it out. Keep going. But that's that's part of my story with my kids. And I like having them being there, I feel like I always got to look up them me because they always had the right people. And when I have that, that's or I feel like I know that I can do it, I know I can do because having support is like, like you count on them. Even, you know, But even the words they use that we talk to other I feel like okay they give you power not to to be stronger and then like the you that you're smart, that you are strong and you can do it. But when we don't share, we're not supporting those people, like when we aren't like with time. So I feel like is when like with now having that right decision. Katie Farnsworth [00:18:28] I think this is so beautiful to hear just how you really taught the boys to have faith in themselves. Because I think one thing I'm noticing is, you know, talking about your journey, even from the identification of the hearing loss, you had doubts, but you really believed in yourself and believed you knew that something was wrong. And I think that is so brave of you to feel that you could, you know, trust yourself enough to seek out answers. And I think those boys now learning to trust themselves and had confidence in themselves, that is only going to make them more successful in the future. And to look at all of their successes right now. Like you mentioned, Eduardo is in college and Esteban is doing so well and he's in sports. And, you know, and that is all possible because of all of those things you have done for them. Maria's tenacity allowed her boys to get the services they needed to thrive in school and foster their own identities. We were excited to interview both Venalonzo brothers, starting with Esteban. Okay, so, Esteban, it's really nice to meet you. Can you tell us a little bit about yourself? Esteban Venalonzo [00:19:51] Uh, I played basketball for like 2 years and playing baseball for, like, eight or nine years. I went to --- high school and used to go to ---  school since pre-K. In seventh grade I switched school. It's like, two years ago. Katie Colella [00:20:16] So you switched schools a lot? Esteban Venalonzo [00:20:17] Yes. Katie Colella [00:20:18] Do you, how how was that? Did you find that it was hard to switch schools? What was that like? Esteban Venalonzo [00:20:25] I don't know. I just switch because my old school is just like, took a while, like COVID or something. And when I switched my old principal, just tell us like to come to other school. Katie Colella [00:20:41] Which school has been your favorite? Esteban Venalonzo [00:20:43] Uh, St. Agnes? Katie Colella [00:20:45] St Agnes. Mm hmm. Katie Colella [00:20:46] What was it like during COVID when you were at home trying to learn on a computer? Esteban Venalonzo [00:20:52] Difficult, because it's like I was like, online it is like my first time and, like doing assignment online and turning and hard time to hear on Zoom or meeting. Katie Colella [00:21:08] When you played baseball, what was your favorite position? Esteban Venalonzo [00:21:11] Oh, pitcher and third base. Katie Colella [00:21:13] Do you still play? Esteban Venalonzo [00:21:14] Yes. Katie Farnsworth [00:21:15] Okay. Will you try out for the high school team? Esteban Venalonzo [00:21:17] Oh, yes. Katie Farnsworth [00:21:18] Okay. Good luck. Esteban Venalonzo [00:21:19] Thank you. Katie Colella [00:21:21] Awesome. Katie Farnsworth [00:21:22] And how is basketball going? Esteban Venalonzo [00:21:24] Good. Katie Farnsworth [00:21:25] How do your two teammates communicate with you and your coach? Communicate with you? Esteban Venalonzo [00:21:30] Just trying we talk to each other and use our brain like your mind to communicate. Katie Colella [00:21:38] So do you feel like you ever struggle to hear when you're playing sports? Esteban Venalonzo [00:21:43] No. Katie Colella [00:21:44] That's great. Esteban Venalonzo [00:21:45] Yeah. Katie Colella [00:21:46] What has it been like having a hearing loss and being in high school? Esteban Venalonzo [00:21:51] Hmm. Not be able to deal with me because it's just like I'm being myself. Like, I don't care about how I look like. Katie Colella [00:22:01] Your mom shared a story that at one point you were being bullied, I believe, was at St. Agnes. Esteban Venalonzo [00:22:07] Yes. Katie Colella [00:22:07] And she told us that she wanted you to go talk to somebody at the school. But we love to hear your version of that story. So what happened? Esteban Venalonzo [00:22:18] They just bullying while me for my implants. Well, I just talked to the principal and our teacher about what happened, why they wanted me for. I talked to the principal and then they want to just talk to them. I mean, bullying or something. Katie Colella [00:22:39] Did you ever talk to this bully again after that? Esteban Venalonzo [00:22:43] No. No. Katie Colella [00:22:44] Just kept your distance. Esteban Venalonzo [00:22:45] Yes. Katie Farnsworth [00:22:47] What was it like growing up with an older brother who also had hearing loss? Esteban Venalonzo [00:22:51] Mm hmm. Fun. It's like, okay, have him, because I feel like I the only son that have hearing aid. But my mom gave the birth, and I, like, see my brother with a hearing, and I feel like we the best friend or something. Katie Colella [00:23:14] How how do you and Eddie communicate? Do you sign more or talk more together? Esteban Venalonzo [00:23:19] Talk more? Well, sometimes sign language when we go to sleep or something. Katie Farnsworth [00:23:25] Your mom mentioned how smart you guys are. Esteban Venalonzo [00:23:27] Yeah. Katie Farnsworth [00:23:27] Do you have any idea what you want to do after high school. Esteban Venalonzo [00:23:31] And just going to college and join team like a sport? Katie Colella [00:23:39] Oh, that'd be great. Would for baseball or basketball? Esteban Venalonzo [00:23:42] Both. Katie Colella [00:23:42] Both. Awesome. Katie Farnsworth [00:23:44] Do you. Do you know what you would like to do for passion for a profession? Yet you know what you want to study in college? Esteban Venalonzo [00:23:51] Mm hmm. Just only on science stuff. Katie Colella [00:23:56] Okay. Katie Farnsworth [00:23:58] And so you have worked with Beth your audiologist? Esteban Venalonzo [00:24:02] Yes. Katie Farnsworth [00:24:02] For a long time. Esteban Venalonzo [00:24:03] Yes. Katie Farnsworth [00:24:04] Do you remember? Do you have any fond memories of her? Esteban Venalonzo [00:24:09] Mm hmm. The first one she gave me two implants. I feel I can hear everything. She trained me to have sign language. Yeah, I can understand what she's saying. Katie Farnsworth [00:24:24] That's awesome. So you, you remember getting your implants? Esteban Venalonzo [00:24:27] Yes. Katie Farnsworth [00:24:28] That's great. What do you remember about it? Esteban Venalonzo [00:24:31] The since, like 18 month I think. I cannot I hear nothing. And then, like, two or three years old, if I know that I can not I hear when I take it off with implants. And then my old school just tells me, teach me more sign language. And I know this the most. So of implants and hearing. And I just feel like I'm proud and happy that others are influencing hearing. Katie Farnsworth [00:25:08] Do you feel like is there ever anything you remember about getting new equipment? What was it like when you would get new equipment or a new upgrade? Because you guys have gone through a few different sets of equipment. Had there been when you really like what? What was that like? Was that hard for you? Esteban Venalonzo [00:25:24] Sometimes, like to hear what's the difference on the sound and to hear something fixed or something that's like, something wrong. Katie Farnsworth [00:25:39] What was it like during COVID when you had to wear a mask everywhere you went? How was that a challenge to understand people? Esteban Venalonzo [00:25:48] Difficult because like with the ones with the mask on, to hear what they're saying, to see their lips or something and to hear difficult from this far. Katie Colella [00:26:03] What did you do to adapt? Would you ask people to repeat themselves or talk louder? Esteban Venalonzo [00:26:09] Well, oh, both. And just like, be closer you know, just to hear. Katie Colella [00:26:16] Your mom talked about that sometimes you and Eduardo go to Mexico, but neither one of you speak. You speak some Spanish, but not as much Spanish. What's it like when you visit Mexico? Not speaking as much Spanish. Esteban Venalonzo [00:26:32] Kind of difficult because my mom just told my family me about saying like, transferring or something. She, she very helpful and my and can take her daughter she can understand English. And I'm trying, you know, transfer something. Katie Colella [00:26:59] Is that something you ever want to learn more of, more Spanish? Esteban Venalonzo [00:27:03] Yes. Katie Colella [00:27:05] And your mom says you and Eduardo argue about who speaks better Spanish. Who do you think speaks better Spanish? Esteban Venalonzo [00:27:13] Me! Katie Colella [00:27:17] Yeah. You got a great mom. Esteban Venalonzo [00:27:19] Yeah. Katie Colella [00:27:20] Yeah. She really fights for you, too. Yeah. Katie Farnsworth [00:27:24] How do you guys usually communicate with your dad? Esteban Venalonzo [00:27:27] Sometimes English and sometimes Spanish. Like some, I don't know Spanish and some I do like to talk. And my mom just telling, like my dad, well, started to do. Katie Farnsworth [00:27:43] Is there ever a time where we were in a situation where it was hard to hear and you had to adapt or speak up for yourself? Esteban Venalonzo [00:27:53] Oh, yes. Because, because my mom and my, uh, my dad cannot hear well like my voice. Well, from my school year, because I just, like, speak kind of low because my voice, like, kind of changed since, like, two years ago, I think. Katie Farnsworth [00:28:18] So your dad, you're saying that your dad had trouble hearing your voice when it changed. Esteban Venalonzo [00:28:23] Yeah. Katie Farnsworth [00:28:24] How did you work through that? Esteban Venalonzo [00:28:25] I just kind of screamed like, I just repeat a word like three times. Katie Farnsworth [00:28:31] Does your dad wear hearing aids? Esteban Venalonzo [00:28:33] Oh, no. He just cannot hear. Left, I think. Katie Farnsworth [00:28:37] Oh, gotcha. Yeah. Esteban Venalonzo [00:28:38] He loss in years. Katie Farnsworth [00:28:40] Okay. Do you think you'll get a job? Esteban Venalonzo [00:28:44] Maybe. Katie Farnsworth [00:28:44] Once you're, I know you're not quite old enough yet. Where would you like to work? While you're in high school? Esteban Venalonzo [00:28:50] Work in a store with Nike shoes. Katie Farnsworth [00:28:54] To get a discount? Esteban Venalonzo [00:28:55] Yeah. Katie Colella [00:28:58] I like that. What else do you want to share about growing up with hearing loss? So did you know kick ups or did you also know that Katie grew up with hearing loss as well? Esteban Venalonzo [00:29:08] No. Katie Farnsworth [00:29:09] Yeah. So I am actually, my family is from the first season of Amplified. And so I, I was diagnosed with a hearing loss when I was two and then I've worn hearing aids. And now I have an implant, too. And I think it's really cool to meet other people who also have cochlear implants or hearing loss because I think every person story is so different. And my story is obviously different than your story, which is even different than your brother's story. Esteban Venalonzo [00:29:39] Mm hmm. Katie Farnsworth [00:29:40] So I'd love to hear, like, if there is something, maybe, you know, that you just really remember about growing up, even if it doesn't really relate to your implants. Like, is there a favorite memory you have of your family? What do you and your family what did you and your family like to do together when you were growing up. Esteban Venalonzo [00:29:58] To hang out? To have like -- restaurant. We used to going on like, fun, like go to the beach or a fun fair or something. One of my best memory is was like haunted house, like two weeks ago when my brothers and my sister-in-law and I was like kind of afraid. But my brother got me like follow me or something. Yeah. Katie Colella [00:30:33] Yeah. I think family is just such an important thing, right? And I'm so glad to hear that you feel close with your family because they think you guys have been through a lot together. Esteban Venalonzo [00:30:43] Mm hmm. Katie Farnsworth [00:30:44] I think a lot, the general public does not understand hearing loss at all of how complicated and abstract it is. What do you wish the general public understood more about hearing loss or hearing aids or cochlear implants? Esteban Venalonzo [00:31:03] To tell them the how the implants are. And how can you hear a lot and to not hear without them. Just yourself with the implants don't care about what people are saying like bullying you or or something like to be embarrassing like to show them like why you wear implants or something. And why I used to be embarrassing since second grade because no me like high school or my other school like after school when it's very I used to embarrassing like well showing about implants and then someone told me that just like yourself. Just own it, don't care what they're looking at you and I just like feel ---  something like covered I just like. Just feeling so ---. Katie Colella [00:32:21] Here we are again. Two for two. Two Katie's, two questions. But we since we were all making this up as we go along, decided that for this episode, we wanted to make it two Katie's, two observations about how we felt about these interviews. Because I think it just left us with a lot of good reflection. I enjoy really re-listening to our conversation with Esteban because he's just such a sweet teenage boy. I have to laugh because if this, we've talked about, if this was a sports podcast, I don't think he would have ever stop talking. That is that is really what he wants to talk about. He does not want to talk about this. And I don't know how much this is, I mean, I guess this question is a bit rhetorical, but like, it just it is so great that Maria kind of allowed him to like mold, you know, Maria allowed him to find himself and his identity, and he's just like this sports loving dreamer that he's not just walking around, only identifying with his hearing loss. He's got all these other things about him, which is, you know what we talked a lot about with you and you and your parents talked about last season. That if they were to name the top three, five qualities about you, you're hearing losses isn't on there and it's not on his or anyone's. So there's not really question there. But I just thought so. But that's I think that's what I love so much about Esteban's interview. Don't you think? Yeah. Katie Farnsworth [00:34:00] Yes, I totally agree. And I think if you didn't know him and you heard him talking, I don't know if you would have picked out that he had a hearing loss right off the bat. Katie Colella [00:34:12] No, no. Katie Farnsworth [00:34:14] I think it's not because he's made it a point to not disclose his hearing loss. But I also think that he has grown up so comfortable in his own skin. He's grown up in an environment that's allowed him to really just be a kid and develop friendships, develop a love for sports, you know, and because of his early implantation, you know, he had access to language. He's he is just thriving, really. And I think that just paints a beautiful picture of what the potential can be for these kids and how so much of their identity is... Identity is is a is a big puzzle. Right. And there's so many pieces that come together with that. And I think over time, you know, maybe he'll consider his hearing loss more of a forefront of his personality or his identity. I think as I have grown up, there have been different instances where my hearing loss was more significant than other times. And I think being able to kind of have the ebb and flow is beautiful. Katie Colella [00:35:19] Yeah, that's awesome. Katie Farnsworth [00:35:21] I think one thing that seemed to be like a defining event, particularly in Maria's mind, was when she was discussing Esteban having been bullied at school. And I felt that you could kind of you could kind of feel the hurt for her, right as she was discussing this. And as a parent, just watching her knowing that this is happening to your child. But on the flip side, it seemed like it was two totally different situations. Right? Because then when we asked Esteban about it, he just very just easily shrugged. Katie Colella [00:36:04] Nonchalant. Katie Farnsworth [00:36:04] Yeah. And didn't seem fazed by it in the slightest. Which I. Katie Colella [00:36:09] Yeah. Katie Colella [00:36:10] Which I also thought was really cool because he seems so comfortable in his own skin. Katie Colella [00:36:15] And I think, to Maria's credit, how she dealt with it as well as she taught him to advocate. That was amazing. Katie Farnsworth [00:36:25] Yeah. And, you know, it reminded me of a time where it wasn't necessarily a bullying instance, but in junior high, I had had a previous friend who she and I had grown up together. We had been in the same class together. Both had a hearing loss. And I think once we went to junior high, we kind of, you know, very naturally went our own ways, you know, parted ways. Where we were just interested in different things. And I felt that my hearing loss was not something that really defined me at all. And I think it was maybe a little more important to her. And so, again, just kind of seeing how that identity kind of just unfolds and what, what is important to one person might not be important to another person. Katie Colella [00:37:24] Yeah, sure. I mean, when people drift, right? You have your you have friends that you may make when you're young and then you do you grow apart. And you definitely are not required to stay friends with someone just because you have a similar diagnosis or experience. Katie Farnsworth [00:37:45] Right. And I think it was really the first time that we both felt independent enough to make that decision. Katie Colella [00:37:50] Oh, interesting. Okay. Katie Farnsworth [00:37:52] And I think that when we were younger, it was just it was it made the most sense, right? It was obvious. Let's you know, we were the only two girls in our elementary school that had a hearing loss. We were, our birthdays were five days apart. We were in the same classroom. We both used the FM system. You know, I think on paper, it made a lot of sense to have us being. Katie Colella [00:38:14] Together, paired. Katie Farnsworth [00:38:16] And of course, we developed a relationship based on that. But I think also as we got older and our interests changed, you know, the natural separation happened and that's so okay. But I remember in sixth grade, you know, when we were starting to separate and I was sad about that because I think at the time I didn't really recognize why it was happening. But now looking back, you know, it was it was just a natural progression. Katie Colella [00:38:41] Yeah. Well, thanks for sharing and always thanks for listening everyone. Katie Farnsworth [00:38:48]Amplified, presented by Lurie Children's, is co-hosted by Katie Colella and myself, Katie Farnsworth. Written and edited by Katie Colella. Tech and Website Support by Katie Fanella Artwork by Katrina Garagiola. Special thanks to the Venalonzo family for sharing their story along with Beth Ternus, Dr. Nancy Young, Tatum Fritz and Marijo Fiacchino. We are grateful for the continued support from the Department of Audiology. Follow us and amplify the story. One word, no spaces. Transcripts are available at LurieChildren's.org/Amplified. If you need resources regarding childhood hearing loss, visit LurieChildrens.org/Audiology-Resources.

5. 

   1 Jun 2023

   Season 2, Episode 2

   Esteban is born. Maria begins the cochlear implant evaluation again, but it goes differently than expected. Guest Dr. Nancy Young discusses how she became a pediatric otolaryngologist who specializes in cochlear implants and her impressive career as a pioneer for pediatric cochlear implantation. Episode Transcript Katie Colella [00:00:00] You're listening to Amplified, presented by Lurie Children's. Transcripts of this and all episodes can be found at LurieChildren.org/amplified. Last episode, Maria Venalonzo, shared her emotional journey about her son Eduardo, being diagnosed with hearing loss and receiving his cochlear implant. As we know from Katie's story in season one, getting hearing technology is never the end game. Katie Farnsworth [00:00:26] Many families want to know the etiology or cause of their child's hearing loss. Often, the etiology does not change the course of intervention. But parents want to know the "why." Sometimes, take myself, for example. I don't know what caused my hearing loss. Due to my later identification in life, I don't even know when it happened. When Maria became pregnant shortly after Eduardo received his first cochlear implant, she decided to search for answers. Maria Venalonzo [00:00:51] So when I get pregnant from my second time, I was like, I was worried. I was like, so stressed out about about like having another kid with hearing loss. And then I met my husband in Chicago. I didn't know about the whole, his whole history. So, I noticed that he was having some hearing loss, but it wasn't that bad. And then he didn't share anything with me. So I wasn't like, I feel like, "Oh, what's going on?" So at the time when I get pregnant and I start worry about it is when I start like pulling up and asking questions in his family. So his mother told me, "Oh, my kids, they also have this same hearing loss, but they get better." And then I was like, "How that's gonna be possible?" So I questioned those things and they said, in there, it gets better is it gets worse. And I was like, "Oh. So I was like, okay." So when I got pregnant, they said they'd review me because I had to mention to my doctor about my concerns. And then so she revealed the right way to do this specially. But I find out something really weird that is not this, that you find out that your kids have hearing loss when you're during your pregnancy. So I was like, "Why do I waste all my time for these one? I were like, so stressing on myself? And they, like, worry about it. And then I didn't know nothing. There's nothing that I have to fix." So I like, ugh. So I let it go. Katie Farnsworth [00:02:37] According to the Center of Disease Control and Prevention or CDC, 50 to 60% of babies born with hearing loss involves genetics. If a family chooses, they can undergo genetic testing panels to determine the likelihood of having another child with hearing loss. But like Maria learned, they cannot diagnose hearing loss prenatally. The only way a hearing loss can be diagnosed is after a baby is born, by a licensed audiologist. Maria Venalonzo [00:03:02] I don't know for some reason, but this is my experience. It happened to me. When I got a birth my, my, my, my boy. The only way that I find out is like your pregnancy, you had this history. It was even runs in the family. Because that's the only way that I find out. Like hearing loss runs in the in the family. They they have to find out. Katie Colella [00:03:28] In your husband's family. Maria Venalonzo [00:03:29] Yes, in my husband's family. They had to find out if it runs in the male or female. And I was like, Oh. So it was like in male, let's say. So it was, I had to find out if I was having a boy or girl. I had to find out the gender. So I was like, okay, what's the difference in the differences, is if there's a boy in the front, in the, in the males. The hearing loss runs in the males. The probably my son is going to going to have a hearing loss is high and then he was a girl, it's a lower than the percentage they think it's going to have a hearing loss. So that's the only thing. But it's nothing that we can fix anything. So we're like, okay. So that's that's my experience that I have. Katie Colella [00:04:16] There are numerous genetic markers for hearing loss, but the most common is GJB2 related, also known as connexin 26. It's estimated that about half of babies born with non syndromic genetic hearing loss is due to a mutation of GJB2. When Esteban was tested for connexin 26 back in 2010, his results were negative. However, the geneticist noted the reported family history from Eduardo Junior and Esteban's father indicate an autosomal dominant genetic hearing loss. Meaning 50% of Eduardo senior's children have the chance of being born with hearing loss, not just the males. Maria Venalonzo [00:04:54] So when I found out there was a boy, I was like, more worry. And I like, "Oh, man." I was praying and I was like, you know, like, hoping the, the, the he was going to be fine. Katie Colella [00:05:04] And did, so do you found out before you had... Maria Venalonzo [00:05:07] Yes. Katie Colella [00:05:08] Esteban that... Maria Venalonzo [00:05:09] Yeah, he was a boy. He was a boy. I was like six months of my pregnancy, I let go. So I feel like I know, I just science sometimes, but I don't trust 100%. I know God always is there for us. But for any reason, they forgot to do the hearing test. This when I was like, asking all the time, it waws nurse it was doctors, it was like, a specialist. The specialists show up that day. So I told him, like, "Do you guys did a hearing test?" They told me yes. And my faith, they told me, yes, they he passed it. So I was like, so happy. I said, yes, I think everything is good. So, when I went back to for the first appointment after I got Estaban, his pediatrician, I asked him, "Can I see the test?" Because they didn't give it to me. And he say, "Yeah, yeah, I'm going to show it to you. I'll have it for the next appointment." And I was like, "Okay." So for the next appointment, I was like, "I need to see the test." In about that time is because, it was an accident happened in the house. A glass broke, like a huge glass and he didn't wake up. So I like, I told my husband and then my husband goes "Oh no, no, no, you're gonna go again." I was like, "For real? There's something happening as I can feel it, I know it." And he was like, "You're not gonna do this again, right?" I was like, "Please listen to me." And said "But they told you, that everything was right." I say, "No, but I feel like something is not right. And I know he's so little, but I feel like he's not hearing this." At that time, I got Eduardo was scheduled appointment with Miss Beth. Esteban was like two months in some. And then so I mention to her, I worry about this thing and then the pediatrician having give me the test. So she told me schedule an appointment and then I'll make an appointment. And then let's see. And then we going test the ear. And we're like, okay. So in that time when I was pulling the record and it wasn't the record for a long time, it was like, you know, brand new record. They give it to me, but it was like, copy, on top of another copy. But it wasn't his name. I was like: Wait, this is not my, my baby's name." I was like, okay. So when I, I confront the pediatrician, I say, "Look, this is, this is not right, you guys told me they my baby passed the test and then is not happening. Like this is not his name." And he looking at me like, "Mam, do you have experience in this one? So you think your son is not hearing. You know what to do." And I was like and that's not what I was waiting for. I said, "You know what? You're right. I know what to do. And the first thing, I'm not coming back with my baby. You're not the right doctor that I want to see." Katie Colella [00:08:12] Good for you. Maria Venalonzo [00:08:14] So I walk away. At that time, it wasn't. I was, like, so great. Now I don't have a pediatrician. So I was like, ugh. My first was Lurie. When I talked to Miss Beth, she gave me a list to choose the pediatrician that I went to. And there was one of the, it was, it was the closest one, but it wasn't close to my area. So since then, I've been having the same pediatrician with my kids, and I feel like they always take care of my kids and they always like if I got some issue, they always like, you know, like they're for me, for my kids. But when we find out they did the test, Miss Beth did the test and he didn't pass it. So I look, I look at my husband and he was looking down he was like, "I'm sorry, I didn't believe you." I was like, is, because I was you know, I took some time off when I, I had a baby. So, you know, I got more time. And then, I mean, it's not your fault, you know, like you wasn't there, but at least we know we got experience.  We did Eduardo. When Esteban, when we find out that he was having some other heart murmur. I was like, ugh. So it was a heart murmur and there was suspicion about that tumor in his brain. So they couldn't do the surgery for cochlear. When she called me, when we did the MRI, the MRI. So she's the one told me this isn't this is this is the issue that we have now. And I was like, great, so what's going to happen? So she referred me to their neurologist, and to find out. But at that time, she told me, like, you know, these are the situation that we have and these are the situation that we had to work on. So, and this is your options. My option, it was like, to do that surgery with or without the magnet. Katie Colella [00:10:23] When Esteban had his MRI, standard for a cochlear implant candidacy evaluation, an abnormality was found. The neurosurgery team now needed to monitor the finding with serial MRIs to make sure it wasn't malignant. Standard cochlear implants rely on an implanted magnet to connect to the external processor worn on the head of the patient. But an internal magnet was no longer an option for Esteban due to the need for serial imaging and the shadow effect that would be created by the magnet. Maria Venalonzo [00:10:54] So in that way, the, they got to be more scanning. And then, so um, then neurology is going to work on and going to be able to see better in his brain. I was like, because it wasn't going to be anything blocking. So we're like, okay, so but we have to work harder than that because we had to shave it in the place that we were supposed to be put a sticker and put the magnet. I was like, okay. So I think that wasn't that hard. So we're like, okay, so we're going to do this. It was it wasn't easy, but when we are the site to do any. So my husband, he was in – so we got. In that year we got two surgeries. It was one for Esteban, it was another for Eduardo. Katie Farnsworth [00:11:45] Wow, big year. Maria Venalonzo [00:11:46] Yeah. So, so, now we have, you know, two kids. But now, like it was, I feel like I got a lot of support from my husband because now he knows about the cochlear and he know, that they, they was working on my son. Katie Farnsworth [00:12:02] Maria witnessed her two young boys undergo five surgeries over the course of a few years. Trust in her boy's care team had fueled Maria's faith through this process. So who is this surgeon she had allowed into her confidence? Maria Venalonzo [00:12:15] And then, the Dr. Young, the double surgery. So that's the reason he got three surgeries, basically like doing one. But he was hearing that the thing he was like hearing and this is what I found out, the more younger you are, the get this the cochlear to decide to go for the surgery, is the better because now I compare three years, then 18 months. And it is a lot. But always stand up for them. And then I always told them "You, you, are right, you are normal, you are - it's the same as the other kids doing. Don't you ever feel you're a special because you're no special. You're always going to be a special because you're special, but not because somebody has better than you. Don't go in that way." And I wouldn't me okay because for me, my older kids and my younger kids, they are the same. I came to this country. It wasn't easy. I had to learn different language. And then because you guys, I had to learn different things. So you see like everybody has the same way. You got some strong one things,just had to work more harder because I feel like everybody is the same, they some people's good for one things and some people good for another things. But it doesn't mean like, you know, you cannot do it. It's only in your head. So you have to keep it up. Esteban got the surgery at young age and his speech is more clearly, and that's for sure. When you decide to do the surgery at a younger age, your brain developmental way in a different way. Because I feel like you got the information, you got all the tools and put all together and it's just a miracle like. You do. But when I'm in, sometimes I know they, they, they as a parent, it's not easy, but I feel like your kid got diagnosed with hearing loss. The more that we work together, there is it's communication between doctors and and you know like the option because we always have options. Like back then we wasn't having options right? But now like is getting better and better and better thank to technology. I don't I haven't met many of our surgeon doctors, but I feel like she's the best that I ever met. That's one other reason when I they they asked me to volunteering for parent way so I always connect with families and with families and share my story. And then it is true like sometimes we don't know and we we need support. And then like I always told my kids, when you don't share things, people don't know, and then when you don't like, share your pain, you feel like you are alone and you're not alone. Because other parents went through the same situation. Some parents got through the same issue that's as true. And then like support them. I feel like I you I feel like at that time when I wasn't having all of those things in the other hospital. So I feel like there were like more supporting me there. Supporting families because they were sharing a lot, of a lot of stuff, a lot of like experience that we don't had. And I think one not that the, that made me feel like that I was doing the right thing. Because like hearing them, talking to them, asking questions and and getting answers, I feel like like I did the right decision for my kids. Because when they're young, I mean, parents have to decide, you know, they they know, they not decide by themselves. So we had to do either like let them be like that or let them or like make this  decision that is going to hurt like a parent, parent a long way is going to benefit them. So I feel like sometimes you get the right support not only from doctors in in in families. I feel like it is more easy for parents to take on this issue. I don't know about many other parents, but most of the parent that I met, that's one of the biggest concerns, if the cochlear implant is going to work. Oh, that's going to be good. The first time when I met Dr. Young and today I still remember those words because she told me 5% is the surgery, 10% is the speech therapy, about 80% is your work. And I didn't get it in the in that time because I was like, how is going to be my work? But now I know what she was talking about because it was like driving my kids over here, driving my kids over there talking with them all the time and teach them. Dr. Nancy Young [00:17:36] I'm Dr. Nancy Young, and I am the head of the Section of Ontology within Otolaryngology, and I'm also the medical director of the Department of Otology and the medical director and founder of the Lurie Children's Cochlear Implant Program. Katie Colella [00:17:55] I'm curious what led you to the field of cochlear implants? Dr. Nancy Young [00:17:59] When I was doing my neurotology fellowship, which is advanced ear surgery, but the patients you deal with are primarily adults. Some kids, primarily adults, though. And cochlear implants had recently been FDA approved for use and adults were not yet approved for use in children. And in fact, there was a lot of skepticism about whether how effective they would be in children who were born with hearing loss. So it was clear to me that this was an emerging field that was very exciting. And I always had faith that the technology would work in children. And I knew that there, coincidentally, I knew that at about that time there was interest in bringing someone to the Children's Hospital in Chicago, we now called Lurie Children's, to spearhead development of ontology in general, including cochlear implant, even though it wasn't yet, the device was not yet on the market. So I knew I knew that this would I really felt this, I felt this had a future. So I thought this was an exciting opportunity. I don't think too many other people would have at the time would have looked at it that way. But that's what happened. Katie Colella [00:19:37] It's crazy that I think there was a time where people questioned the efficacy of cochlear implants in children, with the culture and the success that we know today. Dr. Nancy Young [00:19:47] Well, cochlear implants from the very beginning have been, were viewed very skeptically for many different reasons. The first device in use in the U.S. was a single channel device, and there was a lot of skepticism that a single channel would provide benefit. Certainly multichannel are better. But what's amazing is there are individuals who are adults who lost their hearing, who got at a device with a single channel, who were able to actually understand speech without visual cues. I actually have videos of that. So so that was very early technology and everyone was skeptical. The other part of that skepticism was that the thinking at the time by neuroscientists was that adults who were the ones getting the implants originally right? That adults did not have enough neuroplasticity to make use of the limited information provided by either a single channel or a multi-channel device. And in fact, Dr. Merzenich, who is by many now considered to be the father of neuroplasticity. He was a young scientist at the time, and he was pulled into a multi channel device development situation at his university. And he has some wonderful stories written about this because he based on the thinking of the time, he just was like these surgeons are you know, they don't know what they're doing. And this doesn't make sense because this is going to require too much neuroplasticity and adults don't have it. And then he writes about how he was present at the activation of an adult who lost their hearing, who got this new multi-channel device. And he could understand words right away. And it's like a light bulb went off on his head. He realized that what he had learned about neuroplasticity was incorrect and that this was an area that he needed to research. And he didn't stay in the implant field in the long term. He really did a lot of research looking at adult brain neuroplasticity in general. So there was skepticism from the scientists. And then, of course, there were people who felt that the deaf shouldn't hear. So there was controversy from those quarters. And that made it challenging for people doing implants in the early days because it just made optimism and for benefit and acceptance more difficult. Katie Colella [00:22:54] We all learn about cochlear implant history and I like hearing it from you though. So I feel like whoever taught it to me at some point in undergrad or grad school hasn't been as engrossed in the field as as you are. So I love hearing what it's like from someone who was really in the trenches before it was so widely accepted. Dr. Nancy Young [00:23:16] Yeah, it was. It was very interesting and it was very interesting. I think that in the early days, a lot of teachers didn't want it and didn't want to support it. And I think that's really changed. Katie Farnsworth [00:23:31] Yes. So the Cochlear implant program was founded at formerly Children's Memorial back in 1991, I believe. Dr. Nancy Young [00:23:40] We worked on it for quite a while to set it up, but that in 1991 is when the first child at Children's Memorial was implanted and that was actually the first child to receive a cochlear implant in the city of Chicago. Prior to that, there were a few kids implanted, but they had not in Chicago. They had to leave because there was no pediatric implant center in Chicago until we started one. Katie Farnsworth [00:24:10] That's crazy. Katie Colella [00:24:12] I didn't know that. Dr. Nancy Young [00:24:13] Yeah, well, that's 1991 was when the first multi-channel device was approved for use in children. 85 was when the first multi-channel device was approved for use in adults. And the single channel device never got FDA approval. Katie Colella [00:24:28] 91. That's the year you were born. Katie Farnsworth [00:24:30] Actually was born in 88. For those keeping score at home. Katie Colella [00:24:33] Oh that's right, I'm older, so I don't know, like, just to use some reference of your journey, but nevermind. Katie Farnsworth [00:24:39] So, so, then fast forward kind of at the end, I believe, of 2019, Lurie Children's celebrated the 2000th surgery, you know, cochlear implant surgery. I know we've talked a little bit about advancements just from single to multi-channel. What do you feel like? What are kind of the biggest advancements that stick out in your mind? You know, over the course of of this program? Dr. Nancy Young [00:25:03] Well, there are, there are many advances and they're important for different reasons. One, probably from a hearing standpoint, one of the most important and I don't know what year this happened, but Blake Wilson developed advances in software which are used in all of the implant systems. And that from, I think, laid the basis for major improvement in how much information implant recipients, both adults and children receive. I mean, that that was huge since then, well, I don't know, but since the beginning, shall I say, I mean, of course there's the change in size of the processor. That's huge. I mean, it used to be a big box and you'd have to wear it on your belt. And now we have the equivalent of a behind that you're hearing aid or what I call a button processor where there's nothing sitting on the ear that the entire device is like a desk that sits on the side of the head. So I think that's really huge. The internal device is thinner as well, which is which is nice. But I really think changes in the external is what makes the biggest difference cosmetically, because the surgeons could we could deal with the size issue, although it's nice that it's smaller. I think from a patient perspective, I think for older patients, I mean older for teenagers and adults especially, I think some of the newer features that allow for streaming that sort of so sort of software I think really is really appreciated by patients kind of life changing. Yeah. Katie Colella [00:26:59] Even in the hearing aids, they love it. Dr. Nancy Young [00:27:03] And I think that's been huge. The other thing is magnet design. When I started, there have always been magnets or not always. There was an early cochlear implant system that had a post that stuck out through the skin. It never got FDA approval. It was great for research purposes, but you don't want to post sticking out of skin on the side of your head for both cosmetic reasons. I think because of irritation to the skin around it. That look, that was the early BAHA, too. Katie Colella [00:27:40] Yes, I was. Dr. Nancy Young [00:27:41] In post. All right. Katie Colella [00:27:43] The  BAHA. Mm hmm. Mm hmm. Dr. Nancy Young [00:27:45] But pretty quickly, it evolved to no post and a magnet. The concept of the internal and external magnets allowing retention of the external coil that allows the system to to connect and work. You know, that was really developed for cochlear implants. Didn't exist before cochlear implants. And initially, the magnet could not be removed. And back then, MRI was really not very common, and it was only done of the brain. And most medical centers didn't have one. And major, major medical centers did. But that was about it. So MRI technology has dramatically changed, improved and become quite common and is now used for diagnosis and management of diseases throughout the entire body. So the problem is, if you have a cochlear implant and there's a magnet in it that can create issues with obtaining good images of the brain, because there's artifact, because an MRI is using magnetic fields to generate an image and putting a magnet in that many field causes artifact. So initially, the the devices were not FDA approved for use in an MRI machine. But I, I mean, I still had patients get MRIs even way back when the magnets were not removable. I wasn't going to, you know, take out the device to get an MRI done. If I thought there was a chance we could get a good image otherwise. So working with our radiology colleagues, we were able to, we had a few patients we were able to get MRIs done successfully. And now that's not always possible, depending on if you if you need to image the brain, what part of the brain is it going to be where the artifact is? The other thing is, I think in the early days there was concern about just going into an MRI, forgetting about the artifact, just even being inside of an MRI with a cochlear implant. Now that is very much evolved. So it it became clear over time that not having access to an MRI was a problem. So there were different approaches taken. But the more common approach was several of the manufacturers created a removable magnet and that sounded good. And we certainly did have patients that we did remove it at times. But once again, nobody wants a surgery, in fact, to want to take it out and want to put it back in. They are not major surgeries, but no one wants additional surgeries and anesthesia. So at Lurie, we were as long as we thought we could get decent images. We had a system for getting MRI in patients who had these removable magnets without removing the magnet. We went through that period of evolution, and we've actually published on that our our success. And then I think a really big advance was one of the manufacturers developed what's called a diametric magnet. So the prior magnets were axial, so the forces were perpendicular to the head, meaning the magnet wanted to exit. It was pulled out. Right. So the diametric magnet, when you placed it in a magnetic field, it spins. So they made it so that it would like spin in this little container. So it really didn't put any forces that you could feel on the patient. And it's it was still a removable design because you might want to remove it if you really needed to get a picture of the brain in an area where there'd be artifact. But honestly, we've never had to remove that type of magnet we've fortunately. And just getting MRI's done now is very easy if you have that type of magnet. We used to have to put patients either sedate them or put them under anesthesia because they would feel this sensation and they would freak out. And this wasn't just true of children, but adults would get very anxious because they'd feel something in their head pushing out. So we always sedated the kids, even though they were an age where you normally wouldn't have had to for an MRI when it was the axial magnet that was left inside. But with the diametric, it was great. You know, the kids could just get MRIs and they have these other MRIs. You may not know about this, but they have these five different nicknames for them. They have these really, really quick MRI's. They don't give you a lot of detail, but they use them to image the size of the ventricles. So kids with shunts, where they're just like, Oh, is there a shunt malformation? Are the ventricles getting larger? So you just need a real super quick study that takes a few minutes. So this quick study was designed so that you could do it even on little kids without sedation because these studies are so short. So those were never available to our implant kids before. So now our kids if they need it can also get those quick studies. So if they happen to have a shunt and a cochlear implant or, you know, or some other problem with hydrocephalus in large from the ventricles needs to be ruled out, it can be done. So it's great. There are far fewer kids needing sedation and anesthesia for imaging studies at Lurie. Katie Colella [00:33:45] And I think that brings us this is a good segway to talk specifically about Esteban, who, you know, he was implanted in the early 2000s when the program was established, but still relatively young. And he was a unique case at the time, as we understand. Dr. Nancy Young [00:34:04] Yeah, there were reasons that to do with follow up imaging that were recommended that his initial implantation in one ear did not include the magnet so that he could be followed by the I believe it was the neurosurgical service. Fortunately, we got to the point where that issue was resolved and serial imaging was no longer necessary. So at that point, we were able to implant his second ear so he could be a bilateral implant user. And we actually gave him a new implant for his first year that contained a magnet. So that certainly helps with retention, which is really important because as everyone on the Lurie team is always trying to remind people, how long you use the device every day is really, really important. There's a wonderful phrase that another group came up with that goes like this: eyes open, ears on. I think eyes open, ears on is a great concept. And I think keep in mind that there all the rest of us, we non implanted people, our ears are on when our eyes are closed to so we we have the opportunity to hear 24/7, not people with implants. So while their eyes are open in they are awake, they need to be using them, especially if they need to learn how to listen and learn how to talk. There's a lot the implant center can do, but if if parents are ensuring that young children are wearing their device during waking hours, then they are not going to achieve their full potential. The kids. Katie Colella [00:36:02] It's true, and I think this is such a collaborative field, and it's not just among the medical professionals, it's with the family, because at the end of the day, the people that need to be the most invested are the parents and the caregivers or the grandparents or whomever is keeping these devices on the child. Dr. Nancy Young [00:36:22] Yeah, yeah. Fortunately, as the kids get older, you know, once they they typically bond to their device and start taking charge of it. And well, sometimes they're the ones driving the bus. Yeah. Katie Colella [00:36:36] Which is great when they do that. It's great to see that transition. Dr. Nancy Young [00:36:41] Yeah. I mean it doesn't always happen, especially if there isn't that habit of always using it. Katie Farnsworth [00:36:48] Well, admittedly, it's a very nerve wracking experience, even as a, you know, an audiologist who has had a hearing loss my whole life and working with children who have cochlear implants and seeing how much success they had, I mean, surgery day for me, I was a mess. I mean, I was so nervous and I don't know if it was part of me was mourning, having worn hearing aids and this was going to be such a transition, I don't know. But I was I was pretty nervous going into surgery, to be totally honest. Dr. Nancy Young [00:37:19] Yeah, There's so many different reasons people are nervous. You just, it's incredible. It's so many more than you could ever imagine. Katie Farnsworth [00:37:28] Yeah. Dr. Nancy Young [00:37:29] And there are so many reasons. I mean, so here's an early in the field story, AG Bell, which is an organization that, you know, promotes listening and spoken language. So when cochlear implants were new, you know, 30 years ago, they were certainly very supportive of anything that would support listening to spoken language. But a lot of their adult members with hearing loss were people who, through use of hearing aids and therapy, had developed the ability to talk. And they were very, very proud of that. Katie Colella [00:38:03] Do you think they used a lot of speech reading, too? Dr. Nancy Young [00:38:05] Some of them, of course, did. Not all everybody's different. But for that group. Oh, and there's an interesting corollary with professionals. So with that group of patients, some of them felt that to get an implant was somehow like they were a failure because they should be able to do this with a hearing aid because some people could. And the same thing with auditory verbal therapists. The local auditory verbal therapists we worked with immediately embraced this technology. They saw that it would make things easier for their patients. But there were others elsewhere in the country whose initial reaction was, Well, I'm such a great therapist that my patients don't need this. So they sort of looked at the child getting an implant as somehow a failure. Like if they were truly like the most amazing therapist, as they thought they were, then, then their patients would need this, which is really sort of interesting, given what their goals are of what they want to do. You know, we want our, we want our patients to succeed, but we also don't want to give them the the hardest road. We want to give them the option of, you know, an easier road. Right? Katie Colella [00:39:21] Yeah. Path of least resistance, right? Yeah. Yeah. Katie Farnsworth [00:39:24] One thing that my dad actually brought up in season one was when I was first identified probably in 1991. That's probably where that comes in. Katie Colella [00:39:32] Yes. Katie Farnsworth [00:39:34] So when I was first identified, you know, the Internet was in its infancy and there was no real, like way to connect and to hop online and find out about hearing loss, about, you know, rehabilitation, about any other support groups. Do you find that that has also changed, you know, the kind of families, you know, that the information that maybe parents come in with, like the amount of knowledge that they know when they first meet you versus a few decades ago? Do you feel like it kind of, you know, depends? Dr. Nancy Young [00:40:09] I think I think it depends pretty early on. I think what happened as implants started taking off in Chicago, I think pretty strong networks developed. And so I think a lot of patients would get information from other patients even before social media. And then, of course, we had. But, you know, now we have parent wise, which is a system to maintain privacy but still allow parents to connect with their parents. But before then it was more informal because they didn't have all these rules, and parents would be like, "Hey, just give this people you think our name and number." So we were doing that when that was permissible. Like way long, long time ago. And so, yes, information is more accessible now, but there's also and sometimes there's too much information. People look at information that doesn't apply to them, stories that don't apply to them. The other thing that happens is there's misinformation out there, either either information that is just incorrect or information that's actually being put out there because there's an agenda against having people to have a cochlear implant. So sometimes so it can cut both ways. And I think the other problem is even if there's reasonably good information out there, I think for parents of a child that was born deaf or recently lost their hearing, I think it's very they're very overwhelmed. It's very emotional for some people. I think it is very hard to read something that you're not intimately familiar with already and really understand it. I think it's very difficult. So one of the things I think we we try to do on the team and we often do well with there is always room for improvement, we often do well, is try to reinforce certain messages. I think it helps for people to hear the important information more than once and sometimes from different people. Sometimes one person will have sort of the way to frame it, and that makes the most sense to that parent. And it's and it's it's not necessarily the physician that that has that that that ability to frame it the best and sometimes it. May not be what's being said, but who's saying it. Sometimes the parent will bond with a particular person on the team. They just feel the most comfortable with that person. And when they say it, a light bulb gets on. Even though the same thing might have been said by other people. Katie Farnsworth [00:42:52] I think that's a really wonderful way of saying it, because I think I've definitely seen that in my practice too, where I feel like I've just been really thinking, I've been getting my message across, and then perhaps I'm getting a message from a speech therapist that maybe there is still confusion about what's being said. And I think, you know, again, to give that consistent message is so crucial and there are so many different people that these patients meet along a way, especially is undergoing kind of the candidacy process between the audiologist and social workers and educational liaison and therapists and, you know, ultimately surgeons as well. To have that consistent message, I think is wonderful. Dr. Nancy Young [00:43:35] The other thing I think and I've gotten better as I've gotten older, is to ask some open ended questions, find out what people's goals are. Sometimes when people say things and it strikes you as funny, as off, as confusing, is to stop. And it's hard for us to stop because we've got our thing we really want to say, but to stop and to say, "Well, why are you asking that? Is there something you're concerned about?" And so you're talking about X, but they may be going down a rabbit hole about something that you're completely unaware of and would never have occurred to you. Katie Farnsworth [00:44:15] One thing that actually said as well was rather than just saying, do you have any questions, it's what questions do you have? So it really and and giving that true pause, right. Like allowing a family to feel like it's okay to have questions and, you know, questions are welcome. Katie Colella [00:44:35] And expected. Katie Farnsworth [00:44:36] Yeah, and expected because this especially when we're talking about a cochlear implant I mean, I think it's I think, of course there are questions, right? I mean about some point of this process. So what questions do you have? I felt like that was wonderful. Katie Farnsworth [00:44:53] Well, this has been wonderful. Dr. Nancy Young [00:44:56] Always a pleasure. And it's wonderful to have my two questioners be audiologists, my favorite people. Katie Colella [00:45:05] All right. Katie Colella [00:45:17] This is 2 for 2, two Katie's, two questions. Katie Farnsworth, you have never undergone genetic testing for your hearing loss. Have you ever thought about doing it? Katie Colella [00:45:31] Yeah. It was a big topic of conversation, actually, when I was pregnant with my oldest daughter, Nora. If we were going to undergo genetic testing for her and, you know, at the same time, I was thinking a lot about, you know, what the implications of that might look like. You know, I think for kind of we touched a bit on this in season one where if there was a genetic component to my hearing loss, that was not going to deter me and Chris to have children. And if anything, because of my profession, if our children were to have a hearing loss, they were going to you know, we were going to be able to figure this out and and really get them the support that they needed. I think also because I didn't have any other comorbidities that, you know, for me it wasn't something where I felt like a sense of urgency to really undergo genetic testing. Katie Colella [00:46:31] Okay. Yeah. And I think there's a lot more panels now, too, from when you were a kid. Katie Farnsworth [00:46:37] Mm hmm. Katie Colella [00:46:37] I think it used to just be. Do you have connexin 26 or do you not have that? And now the panels have expanded quite a bit because there we know now more that there is so much is genetic. When it comes to childhood hearing loss. Katie Farnsworth [00:46:52] Yeah, I think there's there's so much more knowledge now than there was 30 years ago when my parents discovered my hearing loss. And at the time, I would I wouldn't be surprised if it wasn't really as much of a conversation as it is now given, you know, just advancements in genetic testing and different things that they may be looking for. Trying to think of a good question for you. You really you got an easy one. Katie Colella [00:47:18] I did. Oh, man. I get the softball. I get the softball. Katie Farnsworth [00:47:24] Okay. I'm wondering about. So my question to you as part of my cochlear implant evaluation process, I underwent an MRI to look at the structures of my inner ear. And I'm wondering if you would like to share your experience with receiving undergoing an MRI? Katie Colella [00:47:44] Sure. I actually had to have an MRI because I had a sudden hearing loss. It was in 2017 or 2018. I had a sudden hearing loss, started with a sudden tinnitus in my left ear, and then two days later I woke up and it was a Saturday. And I could tell I just was not hearing out of that left ear. Went to work on Monday and fortunately, you know, had access to a sound booth. And so our extern at the time Zoe tested my hearing and I had a severe, raising, a moderately severe sensorineural hearing loss. And I was fortunate. I called in Northwestern Medicine and they walked me in that day because a sudden hearing loss is something that you should see an EMT urgently. And I ended up getting steroid injections into my middle ear, and it worked. My hearing did resolve, which that's the also was a such a bizarre experience because it came back like it almost sound like when you had one of those old radios that had the dial, that was the power and the volume dial all in one. And it would you would turn it on and it would softly crackle and would slowly go louder and louder. That sort of felt like in my ear. So but then they still recommended an MRI because it was this sudden thing, and they wanted to make sure that there wasn't any type of, you know, benign mass or anything in there. So and it was and it was clean. But, you know, these when you hear about someone as young as Esteban having to go through serial MRI's, that's quite an experience because they're not a calm experience. I mean, even if you have a hint of claustrophobia, it's tough. You mean, you know, you got to go headfirst into that little chamber and it's this booming experi, you know, it's hard to relax all that booming. I don't know how much you heard the booming. Katie Farnsworth [00:49:48] I was going to say there was minimal boom. Katie Colella [00:49:51] Okay. I guess that is the upside of going in with a significant hearing loss. But then you're not you're not aware. You can't hear the technician talking to you. Right. Like, at least I had the technician who was able to come let me know. I'm things are kind of wrapping up how much longer I have, but you probably don't have any of that available then to you. Katie Farnsworth [00:50:13] I did not. You know, and I think it's interesting because so many of our patients are so little when they have MRIs. And, you know, you have to be so still when you're in that chamber that so many of our patients do undergo sedation to be able to have the MRI completed and have really clean looking images. So I think as an adult, it's a very different experience than, you know, somebody who potentially would been an Esteban's age undergoing serial MRI. Is that my guess would be that he would have been put to sleep for each of those each of those evaluations. But, yes, I mean, I have heard that MRI machines are extremely loud and that is not something that I obviously experienced. Katie Colella [00:51:01] Yeah, it's a booming it it's pretty loud. But I'm glad I you know, I'm glad I did it so I could have that peace of mind. But yeah, I give all these anyone in the field, the radiology credit of helping calm these patients and especially children and then their poor parents waiting for, waiting during it. So, yeah, that was quite an experience. It's funny, I kind of forget about that one I that I'm like, "Oh, yeah, I had that sudden hearing loss." And it's funny because on our team there are a couple people who have and it's just funny that in a group of audiologists, how many of us have that's happened to. Katie Farnsworth [00:51:43] There's something in the water obviously. Katie Colella [00:51:45] Yeah, right. Not the Lurie water. It's very clean. No, but I guess we can. But I guess we should take this opportunity to let people know if you do ever wake up with a sudden hearing loss, significant hearing loss, that is not something to take lightly. You you should, you know, contact your primary care physician and get yourself to an otolaryngologist because it is possible that they can provide a treatment that will resolve it. Katie Farnsworth [00:52:14] Yeah. And even before, also in your case, you know, you had that significant ringing in your ear that preceded the hearing loss as well. So I think also if you're experiencing other symptoms such as that ringing or fullness in your ear, that's not necessarily related to an ear infection or congestion, something like that, I think that's something that should be addressed quickly and not just ignored. Katie Colella [00:52:41] Yeah, absolutely. Katie Farnsworth [00:52:42] Stay tuned for episode three, where we dive into really language as a whole. Katie Colella [00:52:49] Yeah, no, that one. I'm excited because it's a trilingual family. Stay tuned. Thanks for listening. Katie Farnsworth [00:52:55] Amplified, presented by Lurie Children's, is co-hosted by Katie Colella and myself, Katie Farnsworth. Written and edited by Katie Colella. Tech and Website Support by Katie Fanella Artwork by Katrina Garagiola. Special thanks to the Venalonzo family for sharing their story along with Beth Ternus, Dr. Nancy Young, Tatum Fritz and Marijo Fiacchino. We are grateful for the continued support from the Department of Audiology. Follow us and amplify the story. One word, no spaces. Transcripts are available at LurieChildren's.org/Amplified. If you need resources regarding childhood hearing loss, visit LurieChildrens.org/Audiology-Resources.

6. 

   22 Mar 2022

   Season 1, Episode 1

   In episode 1, Meet Katie and her parents as they discuss her hearing loss diagnosis on its 30-year anniversary.

7. 

   21 Mar 2022

   Season 1, Episode 2

   In episode 2, Katie and her parent navigate the school system.

8. 

   20 Mar 2022

   Season 1, Episode 3

   In episode 3, Katie and her family reflect on how her hearing loss intertwines with her identity.

9. 

   19 Mar 2022

   Season 1, Episode 4

   In episode 4, Katie shares about life as a young adult with hearing loss, reflects on harder times, and reveals her current career.

10. 

    18 Mar 2022

    Season 1, Episode 5

    In episode 5, meet Chris, Katie’s husband, as they discuss marriage and parenthood with hearing loss.

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