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

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 hearin

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 s

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 th

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 b

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,

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