Amplified Podcast

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 wa

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

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 s

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

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 [