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.
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Season 2, Episode 1
06/01/2023
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...
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Season 2, Episode 2
06/01/2023
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...
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Season 2, Episode 3
06/01/2023
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...
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Season 2, Episode 4
06/01/2023
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...
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Season 2, Episode 5
06/01/2023
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...
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26989395
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Season 1, Episode 1
03/22/2022
Season 1, Episode 1
In episode 1, Meet Katie and her parents as they discuss her hearing loss diagnosis on its 30-year anniversary.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520585
In episode 1, Meet Katie and her parents as they discuss her hearing loss diagnosis on its 30-year anniversary.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520585
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Season 1, Episode 2
03/21/2022
Season 1, Episode 2
In episode 2, Katie and her parent navigate the school system.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520588
In episode 2, Katie and her parent navigate the school system.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520588
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Season 1, Episode 3
03/20/2022
Season 1, Episode 3
In episode 3, Katie and her family reflect on how her hearing loss intertwines with her identity.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520591
In episode 3, Katie and her family reflect on how her hearing loss intertwines with her identity.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520591
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Season 1, Episode 4
03/19/2022
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.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520597
In episode 4, Katie shares about life as a young adult with hearing loss, reflects on harder times, and reveals her current career.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520597
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Season 1, Episode 5
03/18/2022
Season 1, Episode 5
In episode 5, meet Chris, Katie’s husband, as they discuss marriage and parenthood with hearing loss.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520600
In episode 5, meet Chris, Katie’s husband, as they discuss marriage and parenthood with hearing loss.
/episode/index/show/2c830cec-63e2-4037-86c6-9761f6c2afd2/id/26520600