Episode 18: Parent Panel
Episode 18 Show Notes
In January, 2019 a team of our staff went to Israel to collaborate with professionals at a school for children with hearing loss in Tel Aviv. Here is some information on the program: http://www.beitmicha.org.il/en/home/. In July, 2019 the Beit Micha Team came to the United States to visit Child’s Voice. One of the activities the Beit Micha Team participated in was the observation of a recording of All Ears at Child’s Voice: A Hearing Loss Podcast. This episode is a “Parent Panel” of 4 mothers of children with hearing loss who attend Child’s Voice programs. Wendy talked to these “Superwomen” about a variety of topics including:
Their experiences with early identification and implantation
Juggling multiple therapies
Caring for children with needs in addition to their hearing loss
Early sign language exposure
Making decisions about using a family’s native language
The role their therapists have played in their journey’s
How they try to take care of their children by practicing self-care
And so much more!
Where to Find Us
Special thanks to John McCortney for his work recording All Ears at Child’s Voice episodes. Episodes of All Ears at Child’s Voice are graciously edited by John McCortney.
In January, 2019 a team of our staff went to Israel to collaborate with professionals at a school for children with hearing loss in Tel Aviv. Here is some information on the program: http://www.beitmicha.org.il/en/home/. In July, 2019 the Beit Micha Team came to the United States to visit Child’s Voice. One of the activities the Beit Micha Team participated in was the observation of a recording of All Ears at Child’s Voice: A Hearing Loss Podcast. This episode is a “Parent Panel” of 4 mothers of children with hearing loss who attend Child’s Voice programs. Wendy talked to these “Superwomen” about a variety of topics including:
- Their experiences with early identification and implantation
- Juggling multiple therapies
- Caring for children with needs in addition to their hearing loss
- Early sign language exposure
- Cultural competence
- Making decisions about using a family’s native language
- The role their therapists have played in their journey’s
- How they try to take care of their children by practicing self-care
- And so much more!
We thank Danielle, Lindsey, Nina, and Tunga so much for their time and most importantly for sharing their truths with us. We learned so much from these conversations and we know you will too.
Here are some resources parents may find helpful after listening to this episode:
Special thanks to John McCortney & Michael McCortney for their work recording All Ears at Child’s Voice episodes. Episodes of All Ears at Child’s Voice are graciously edited by John McCortney.
Disclaimer: Child’s Voice is a listening-and-spoken-language program for children with hearing loss. All Ears at Child’s Voice: A Hearing Loss Podcast is a resource provided by Child’s Voice. Reference to any specific product or entity does not constitute an endorsement or recommendation by Child’s Voice. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Child’s Voice employees are those of the employees and do not necessarily reflect the view of Child’s Voice.
Kiersten: Welcome to All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. I’m Kiersten Flynn and I’m a Primary 1 teacher at Child’s Voice. I teach a small group of 3-5 year olds where we focus on speech, listening, syntax, and vocabulary development. I recently graduated so this is my first year teaching! I am so excited to start my career at Child’s Voice. It is such a rewarding program servicing many families and children. Last week on the show, Tatum & Wendy interviewed Dr. Anne Marie Tharpe, from Vanderbilt University. It was a great discussion so go back & listen if you haven’t yet. And now, to start the show….
Wendy: Welcome to another episode of All Ears at Child’s Voice. We aim to connect parents of children with hearing loss with the professionals who serve them. I am your host, Wendy Deters. Our other host, Tatum. Fritz is currently in the toddler room attending to the children of these amazing parents that have joined us here this morning. For those of you listening, we are putting on this parent panel as part of a collaboration with a school for children with hearing loss in Tel Aviv, Israel. If you’ve listened to recent episodes, you heard sort of a recap of the Child’s Voice team’s trip to Israel. We had an incredible experience. Six of us went this past January. We had a whirlwind week of professional development and also some amazing cultural experiences that I know none of us will ever forget. We’re so grateful for forming this relationship. Now, the team from Beit Micha is here. We’ve had a really excellent three days of professional development. We were able to observe a cochlear implant surgery at Lurie Children’s Hospital with Dr. Nancy Young. We spent all day yesterday at Northwestern University learning about all of their incredible research programs that they’re doing. Today we’re here at Child’s Voice. Beit Micha staff gets to have the opportunity to see our amazing kids in action and our wonderful staff and we’re so happy to host them here today at Child’s Voice in Wood Dale. Tomorrow they’ll see a Child’s Voice in Chicago and visit Lurie Children’s in Chicago. And if they’re not too exhausted after that, they’ll have a little time to explore the city of Chicago and then fly back to Israel. So thank you all for coming this morning. We have a really great group of parents with all of our parents are amazing. But we’ve sort of singled out some volunteers to come talk with us this morning. So thank you guys for being a part of this experience. All of the families here this morning have participated in home-based sessions and in our toddler group. We have one family that participates in the toddler group in Chicago. And everyone else participates here in Wood Dale. And we have one child who has one mom of a child who has graduated from Early Intervention is now in our school program. So we’ve tried to, gather parents that have sort of a variety of experiences and I think that really reflects what kids with hearing loss are all about and what that world is like. Everybody has such a unique experience. As a provider myself, I can say that it’s really incredible to work with each individual family and get to know them and realize how absolutely different everybody’s family and child is, but also how many similarities everybody has with one another. So I’m gonna have each family introduce themselves and we’ll ask them questions and just have a nice conversation. So Danielle, I’m going to start with you. If you could please introduce yourself, tell us just a little bit about your son.
Danielle: My name is Danielle. My son is Lucien. He just turned two in April and he was diagnosed with profound hearing loss at four months of age. And we started the cochlear implant process and he was implanted at 10 months and then the second one actually a year ago today at 15 months. So he’s bilaterally implanted and thriving, doing so well and we are so grateful for the cochlear implant team at Lurie’s, for Child’s Voice, for early intervention. He’s been doing really well.
Wendy: You have a great team and he’s a great kid and has a great family. You and your husband are amazing. As you said, he was diagnosed with hearing loss at four months old. He was implanted by 10 months old. What helped you be so proactive in getting him access to sound so early on in his life?
Danielle: I think the biggest thing was just our support team. So he was diagnosed at four months of age. We kind of already knew since birth, he failed multiple hearing tests, typmanpograms. We did the whole thing. We were hoping it was just going to be, you know, fluid in the ears. But we kinda knew at home, it was more of he wasn’t responding to the doorbell, the dog barking, pots and pans. We tried it all. So we kind of expected it once we went into our ABR tests that we did, the auditory brain response, which gave us the final diagnosis of profound hearing loss. But we’ve been just hooked up with such an amazing team of people through our audiologists and all of our therapists know each other. Like everybody’s worked with everybody, everybody communicates with each other. And I think that’s been our easiest thing to navigate through this whole thing.
Wendy: That’s so helpful to hear because we try really hard to communicate with the other professionals on a child’s team. And like you said, they’re not all here at Child’s Voice. You have someone at home, you have someone at the hospital, you have early intervention. And, and I think that’s so helpful for us to hear that. theory is that, oh, this is best for the child. But hearing that from a parent is very encouraging
Danielle: It’s been amazing. Our cochlear implant team, I couldn’t say enough about Dr. Young who you guys witnessed the, got to watch the cochlear implant, she is the reason for it all. I mean, if it wasn’t for her, we wouldn’t have had this opportunity and all her, cohorts that have helped us along the way, her therapist or audiologist, our early intervention therapist actually used to work here. So she hooked us up with Child’s Voice and we we started Child’s Voice when Lucien was five months old. So we were in the baby group with Wendy, uuntil Lucien turned almost two, I think he was like 15 months, 18 months. And then we transitioned to the toddler group. So it’s been, it’s been great. Dealing with a child with hearing loss is difficult in itself because of communication. But we’ve had such great support along the way and we’ve, I’ve met, you know, families who’ve gone through this and I always say it’s kind of like when you get a new car and you see, you know, I got this new car and nobody has this car and then you get it and everybody has this car and you’re like, wait a second. I thought I was the only one who had this car. And now you notice it all the time. You notice kids with hearing aids and cochlear implants and you know, when we’re out in public, you know, kids ask questions, kids are curious, kids stare, kids are like, “Mommy, what’s that?” And I am not afraid to turn it into a teaching moment. I really encourage kids like, you know, if they’ve got glasses on, I’m like, well, you wear glasses for to see, you know, he wears those to here. So I like to turn a lot of this into, you know, just educating everybody else. It’s been, it’s been a great journey. It really has.
Wendy: Well, you guys have really embraced it too. I think everybody has a different story and a different way that they process, what, what goes on in their family, in their lives. And you guys have relate from the beginning, just like embraced what’s going on. And you never really pushed back. You just sort of, were open to the whole process.
Danielle: We really never hesitated. It was, it was a no brainer for us. I mean, honestly, I’m kind of going into the rest of my questions here with my answers, but it really was the opportunity to get cochlear implants was the easiest decision we could ever make. The hardest decision was picking which company to choose. That really was the hardest thing. And you know, we already knew going into it, this is what we’re gonna do. We’re gonna give our child the best outcome. As a parent, your job is to provide your kid with the tools for success. We both come from hearing family. We don’t have anyone deaf in our family. We have no hearing loss in our family. So we’re not really sure what happened, why it happened, we didn’t care. We just wanted to fix it. So that kind of goes into the next question with the challenges that we’ve faced as new parents. I’m a pediatric nurse, so that really had a lot of ease to kind of go into this. I’ve seen worse. This was a very small hurdle that we had to go through. Somebody always has it worse and hearing loss was really nothing. Our family was constantly like, why, why did this happen? What happened? I don’t know, we don’t know. And we never did genetic testing. He was developing normally. He’s developing, normally he’s succeeding. We, we don’t really care. I mean, if we have another child and he has hearing loss or she has hearing loss, it’s okay. His cochlear implants are a part of his life. He docks his, his devices and the charger at night. He puts them on in the morning. He knows how to turn them on. They’re just part of him. His cousins all know like, “oh, Lucien’s ear fell off.” And “we’re like, okay, go put it back.” It’s him and that’s all he knows. So we’re really glad that we were able to start the process early because that’s all he knows. It’s going to be with him forever. So we’re glad we’re able to get him used to it and, and just thrive. I mean, it’s been, it’s been amazing.
Danielle: It’s great. I think you’ve been such a support to other families and I think all of you being here today like just sort of speaks to the fact that this is really a community and parents really do support one another, which is why our toddler group I think is so important and helpful. And the baby group is also amazing, not only for the kids. Of course the children learn, that’s the whole point. But the conversations that go on in between when kids are reading stories or playing in the sensory table, those are also just as important for parents to feel supported with one another. Thank you for being here and for sharing with us and we appreciate it. Our topic with Danielle was early identification and implantation. Like I said, we sort of gave each family a specific topic that we wanted them to think about and talk with us about. So Lindsay is our Chicago family here and so if wouldn’t mind introducing yourself and telling us a little bit about your daughter. And we’re going to talk a little bit about early sign language exposure.
Lindsey: Sure. So I am Lindsey. My daughter, Emma, is two. She turned two in March. She was born with progressive hearing loss, so she started at a normal level in one ear and mild in the other. And over the course of the first year, she lost her hearing loss progressively. So it wasn’t until 12 months of age that we actually got our first official diagnosis that she did have some sort of hearing loss. We thought like, Danielle, maybe it was fluid, maybe she wasn’t performing well, maybe there were all these other factors that weren’t giving us the results that we were looking for in her hearing tests or sedated ABR’s, et cetera. But she is now profoundly deaf in one ear severe to profound in the other. She had hearing aids at the age of 13 months and then she got her first implant when she was 17 months and then she got her other side implanted at 27 months, which was just last month. So we’re now in our first couple weeks of activation with her left side, so, and she’s doing really incredibly well.
Wendy: Yeah. Did you find that this second side, she seems to be acclimating to the second side differently than the first side?
Lindsey: I don’t know if it has to do with the language that she already has or the fact that she had access to sound prior to the implantation on the left side because she was born with normal hearing, so she knew what sound was and she knew that there was sound to be heard. So those, all those nerve connections were already made for her, but she did, she really reacted to the left implant a lot quicker. A lot easier. She doesn’t really fight us when we try to take off her original implant. We’re instructed to have her spend an hour a day with her brand new implant just so that she doesn’t isn’t going to be relying too much on her on her initial implant. So we want to get them to balance out and she’s really doing well with the new implant. She still prefers if she were to have one. She prefers the original, but we’re helping to catch her up.
Wendy: So the topic that we wanted to talk with you about is using sign language when Emma was a baby. What prompted you to start using sign and how did you start along that journey?
Lindsey: Sure. So let me start by saying that neither Emma nor I are fluent in American Sign Language, but we are learning and it has become a really key part of our world and our lives. We started using it for a number of reasons. I think the very first one when we first learned that Emma had hearing loss I was just really afraid that she was never going to be able to hear my voice. That was my moment of breakdown. You know, I just, as a mother, I wanted her to be able to, to hear me, to communicate with me. Once I got over her not being able to hear me, I figured I need to be able to communicate with her, you know, so I kinda got past that selfish needing her to know my voice, but I always wanted to have an opportunity to communicate her. We didn’t know her hearing device options. We didn’t know if hearing aids were going to be an option for her. We didn’t know if cochlear implants were going to be something that would be a fit for her. So I wanted to explore those options and wanted to understand what our communication options were going to be for her. Once we realized that her devices were going to be an option for her, I still wanted to be able to talk to her at bedtime and bath time and if for whatever reason her batteries weren’t working and we didn’t have an immediate backup available, I never wanted there to be a moment when I couldn’t communicate with Emma. And, so that was a big part of kind of why we started that kind of looking forward in her life. The other big reason was that without her implants, Emma is deaf and she is always going to be deaf and I wanted her to be able to engage with the deaf culture, the deaf community, if that’s something that she wanted to do in the future. You mentioned about the, you know, the new cars. I feel the same way. We are seeing families that have deaf and hard of hearing kids all the time. And so if she wants to be able to communicate with folks that haven’t been implanted or choose American Sign Language as their first language, I want her to be able to have shared experiences and to communicate with them. So those were some of some of the really big reasons. Plus it was an option for me to be proactive in a really uncertain time in our diagnosis period. In that whole first year, we didn’t know what we were dealing with, you know, I couldn’t get her any devices. I couldn’t do speech, I couldn’t do anything ‘cause we didn’t know if she could hear. So it was something that I could do to help her proactively in a time that, we were just kind of waiting.
Wendy: Sure. Yeah, that makes perfect sense. Did you find that you were given any conflicting information by professionals? We, all of us as professionals have had this discussion in many different ways and many different times I feel like our main goal is communication. That’s everybody’s main goal. How we all go about that can be different. And here at Child’s Voice. Our ultimate goal is listening and spoken language to the best of that child and family’s ability. So I’m wondering if you had any conflicting recommendations or opinions from professionals along the way?
Lindsey: Yeah, you know, I did actually, and it was something that we were left to navigate ourselves in a lot of ways, but it was initially presented to us as an either/or it was either you learn sign language or you get your child implanted and you do listening and spoken language. It wasn’t both. For us it needed to be both because I think I just didn’t see why it couldn’t be both and a lot of the research that I was doing was demonstrating that kids that have sign language and are implanted can be really successful too. So I think it was the either/or that was really challenging for me to navigate and trying to understand and in keeping the child’s best interest at mind. Like why aren’t we exploring these two options in tandem? So that was for us, for some people and some families. It doesn’t work to do both. But for us, that was an approach that we wanted to take. For the therapists, at Child’s Voice for example, we were encouraged to just do our research and figure out what was going to work best for our family. We did receive some feedback from other care providers that said, don’t waste your time, don’t waste your energy, don’t waste your resources on learning sign language when what you need to be doing is focusing your energy on listening and spoken language. That was a really hard thing for me to hear and I graciously took the advice. But at the same time, all parents involved are, just trying to do what’s best for our kids. And so at the end of the day we figured I’ve got the emotional resources, capacity to be able to explore American Sign Language for Emma as well.
Wendy: How do you feel that it has affected her ability to learn, to listen and speak? I haven’t had the pleasure of working with her as much as some of our other therapists, but it sounds like she’s doing fantastic. And I know, I see Danielle shaking your head. I know that you guys used some sign early on and Lucien’s talking like a crazy person. So how did that interact with how she was learning to listen to talk?
Lindsey: I think it’s only helped. I think that still to this day, even though Emma has a very large vocabulary for a two-year-old, we still do speech and sign language in tandem a lot of the time. And I think it’s really helped to give her early access to language. I think it was an option for us to kind of look at her world and help her to understand it in a number of different ways and how, however her brain processed it, it worked for her. She doesn’t really sign back to me, but she understands sign pretty well, which is okay. You know, when I think about it, Emma can’t hear but she can speak. So if there’s an environment where she can’t hear, but I can sign to her and she can understand and then respond verbally, that’s okay. And that’s really how how sign has been a big part of our, our world. It’s given us a way to communicate with her no matter what our environment and it has only helped.
Wendy: That’s wonderful. That’s great. It’s great that you found a team that is supportive of you as a family. You know, in Early Intervention. I feel like that’s our, that’s our goal. It’s family centered.
Lindsey: Yeah. When we decided that sign was going to be our route and once we got the diagnosis, once we figured out that Early Intervention was going to be an option for us, Child’s Voice was recommended to us by Dr. Young at Lurie who did Emma’s implant surgeries. I called up, I got Rollen on the phone. I started talking his ear off about what I wanted for Emma, what I was hoping, hoping for her for future, what kind of communication that we wanted to prioritize for her. And he recommended kind of looking at both options and trying to find therapy options that were going to be listening and spoken language primarily for her aural rehabilitation and then doing spoken language and sign language for her speech therapy. And we found a really, really phenomenal team that worked together and was supportive of Emma and our goals for her and wanted to support our objectives and our goals for helping them up to here. So the, the team has been really, really incredible.
Wendy: Wonderful. Thank you so much for sharing. So we will move on next to our of our oldest child here on the panel. Tunga if you could introduce yourself please and tell us a little bit about Tulguldur.
Tunga: Yeah, my name is Tunga. My son, his name is Tulguldur. He’s turning four years old this November and he actually got diagnosed at birth, at the hospital. He has the mild to moderate hearing loss on both ears. And he got fitted for hearing eight when he was a year and a half old and the started getting early intervention services when he was about two years old. And started to going to Child’s Voice in the half year old I believe. Yeah and he’s doing well.
Wendy: And before he came to the toddler group he received therapy at home too.
Tunga: Yeah, yeah, he received therapy at home.
Wendy: So we wanted you to talk with you a bit about cultural competence and developing dual languages. You are a wonderful advocate for your son and your family. You’ve taught, I know me personally. But, everyone in the school, you’ve taught them a lot about your culture. And every time we learn about a new family’s culture, it sort of like opens our minds to making sure that we’re thinking about those things when we’re working with families because everybody has a different culture regardless of where they are originally from, what language they speak. Every individual family has their own family culture. So thank you so much for always reminding us to keep those things in mind because it does affect the way that a child learns to communicate. It definitely affects the way that the therapists form relationships and interact with families. It’s something that we constantly are hoping to learn more about and continue to increase our cultural competence. So you do such an amazing job of honoring your son and your family and your culture and also you’ve learned all of these new systems like early intervention and what we do at Child’s Voice. How did you do that? What do you think helps you learn all of these new, different systems? And if you could just briefly go back and tell us a little bit more about where your family is from.
Tunga: Yeah. I’m from Mongolia. And really what helps me is, you know, it’s my son and his wellbeing, you know, he’s ability to hear and listen, speak is a high priority for me and my family. So we always open to new systems and do whatever it takes to help him. And I feel like the early intervention system and everybody’s you know, commitment at Child’s Voice really helped me to achieve that goal and made it possible. So really cultural differences. And, you know, family differences, whatever it is. It didn’t really matter to me. All that mattered was that my son learned to hear and speak. So that made everything possible.
Wendy: I’m sensing a theme here from all of you, it’s so incredible. When Tuguldur was very young, I remember having some conversations about which language to speak with him and why. And having some initial conversations about that. What did you ultimately decide about incorporating Mongolian into his, the Mongolian language into his life and what helped you make that decision?
Tunga: The primary language that we use in our household is English anyway. So I wanted to make sure that he learns English really well and once he masters that, you know he be able to learn the Mongolian and maybe even many more languages, who knows. Right? Yeah, just making sure, him learning the English was very important for me and for everybody in our family.
Wendy: How did your EI professionals get to know you and your family and help make the therapy experience comfortable for you in your home? We’ve talked with the, the folks at Beit Micha about some differences in the way that we provide services. We do a lot of home-based intervention. How is that different than what you get here in the center?
Tunga: Well, um, the early intervention, I feel like everybody, all the professionals, everybody at Child’s Voice was there very they welcome my culture and they respect my culture and they’re always make sure to listen to my family’s needs and, and, and make sure, you know, they can make changes if there’s any conflicts. I don’t know, just the making me feel comfortable in expressing myself and culture that alone it just helps a lot. Yeah.
Wendy: You told me once I’m about something that I had never even thought of that in your culture. It’s not really okay to cut a picture of somebody. And I’m thinking back to all the cute little crafts that I’ve made where we take a picture of your child and cut out their mouth and we feed them. That’s something I never would have thought that that is sort of disrespectful.
Tunga: That was interesting. I went into the discovery room, I saw my son’s picture printed and taped on the ground and people stepping over it and standing on top of it. You know, that was at first weird to see. And also, you know, I get all these papers with his, you know, at home and he’ll bring his pictures all his parts cut off, you know, and it’s, yes It is very disrespectful in our country. But I know that, what is the intention is for, what is the purposes for. And I know what is important for me and my family and teachers at the Child’s Voice and that they’re trying to teach my kid to hear and listen. You know, and speak, and that’s the part of the method of doing it right. So understanding the method and why they use this method, you know, is very important.
Wendy: That’s a good point. That’s a great reminder for professionals. And, I see you all kind of nodding that we need be mindful of explaining why we’re doing what we’re doing.
Tunga: Yeah. It’s you know, like you said, the communication is very important. You know, communicating and needs of the family and needs of the professionals is very important, communicating each other’s concern and listen, you know, open to listening to each other’s, you know, needs and being able to make changes without losing the importance of why we are here in the first place. It’s very important, you know, all of us here to teach our kids to hear and speak, you know, so to be more specific, you know, maybe the families can ask more question about the method and why it’s important to use this method and professionals in return maybe, you know make sure to express that they do respect the culture and they’re willing to make changes you if there’s a conflict and, you know, I think that’s very important and I feel like everybody’s at Child’s Voice a great job. I feel very confident expressing me, myself and my culture to them.
Wendy: Yeah, that’s great to hear. So if you tell the discovery center, please don’t cut up pictures. I am certain that they would.
Tunga: And I would never do that, no. No, it’s okay with me. No problem.
Wendy: I think sometimes as professionals we get nervous about asking families those really hard questions. Is this okay? For example, I work with a family and I’m very careful to take off my shoes when I come in the house and put on socks because I get the sense that it’s disrespectful to be in their house with bare feet. And I didn’t know the answer to that. And one day I just asked them like, “I wear socks. Is that okay? Is that what you want me to do? Is it disrespectful to show the bottom of your feet?” And we had a conversation about it, but I think it’s hard to have those conversations.
Tunga: I don’t think you shouldn’t feel that way because we actually will be happy to talk about it and to tell you if there’s anything that you don’t like or like, you know, it’s actually better to have the conversation before and then, you know, later.
Wendy: That’s good to hear. Thank you. That’s great advice for, for professionals. Thank you. Thank you so much for sharing.
Tunga: Yeah, thank you.
Wendy: All right. Nina, our fourth parent that we have today with us is Nina. So if you would like to introduce yourself and tell us a little bit about your daughter and also a little bit about your family.
Nina: So my daughter is Tammy, my daughter who attends Child’s Voice, Tammy and she has a twin sister to Tamika. I have two older daughters as well who are seven and nine. So we have a family of six. We are a licensed foster family. So Tammy and Tamika both came into our home when they were 10 days old. Tammy spent a lot more time at the NICU and we made a decision when they told us “we have this children for you,” and we all talked about it, our whole family. And we just, we just felt called to really take Tami and Tamika and have them be a part of our family. And then just this past March, we adopted Tammy and Tamika. So they are legally a part of our family, although they have always been a part of our family. So Tammy has a lot of needs. She has cerebral palsy. She also has a cochlear implant on her left side. She wears a very strong hearing aid on her right side. In addition, she also has many vision problems. She had cataracts when she was under a year old, so she’s deaf/blind. But using the word blind makes me think that she can’t see anything, but she can see a lot and she is very, she’s just an amazing kid. She can do so much. You hear me say these diagnoses, but if you see this child, so different than hearing all the diagnoses that she has. So Tamika joins us too. She’s in the other room in the toddler program also.
Wendy: Yes. That was something new. We started this year. We had a few families at the same time with twins and we had one twin who had a hearing loss and the other twin with typical hearing and childcare needs and it’s very hard for families of really young children to have one child in childcare and one here. So we decided to have those hearing twins come to group with us. And it’s been really wonderful for us. I think we’ve learned a lot from the process. How has it been for, for you?
Nina: Yeah. I think Tamika really enjoys the class and Tammy likes it too. I think to Tamika is ready to do her own thing this now that she’s two and a half, so we’ve got her signed up for her own little preschool program that she can go to while Tammy is at Child’s Voice. Just to give her something a little bit different. That’s specifically for her since she has to do everything for Tammy. Now it’s, I think it’s time for it to make it, to get something that’s specifically for her.
Wendy: Do you think to Tamkia’s language has changed in any way by being in the toddler program?
Nina: Probably the toddler program is such an enriched environment. There’s so many things there. I’m a teacher and I’m in education and I worked with young children and up through middle school. But yeah, I really appreciate all of the just like child friendly environment and there’s so many great ideas. I’m like writing stuff down when I leave, like “Oh yeah, this is amazing.” And all the activities that you do in the dramatic play falls right in line with everything I’ve been taught just as an educator outside of the special education space.
Wendy: Yeah, that’s great. I’m a speech language pathologist so I always marvel at the teachers and their creativity. That is not something that I am able to do. We have some really, really talented staff.
Nina: Everything is so well planned and thought out.
Wendy: They will very much appreciate you acknowledging that because they put a lot into that because they put a lot into the plans.
Nina: I can tell.
Wendy: Yeah. That’s great. So like you said you have a lot of different needs to juggle within your family. And then for Tammy specifically, what do you think helps you sort of organize all of that and get all of her needs met?
Nina: Yeah, I think number one, I have an amazing husband who lets me have time to myself. Many evenings I’ll go and leave the house for an hour or an hour and a half and he takes care of everybody and puts everybody to bed. And I think it’s so important to have your sanity just so I can clear my mind. I think the one of the biggest challenges was just getting to the multiple doctor’s appointments, which are so randomly spaced out. So we had a part time nanny who would come to the house and helped me and I was working part time and I thought that that was helpful cause I could often make a lot more phone calls at work than I can do at home with the toddlers. But like all of these wonderful moms are saying, I prioritize. To me that is the utmost importance to prioritize all these doctor’s appointments, all the therapy sessions. Her brain is ripe right now for all of the learning she’s getting and now is like the time to strike. You know, like now is the time to get all that information in her brain. Because this is like the most neuroplastic that her brain is ever going to be. So we need to take advantage of this and totally prioritize all of the things that she needs through her doctor’s appointments and her therapies.
Wendy: That’s wonderful that you mentioned taking time for yourself. I think that, no offense to fathers, I think as, as parents we put our kids first, but I think sometimes we forget that our self-care is just as important, if not equally as important as caring for our kids because if we don’t care for ourselves then we’re not as a good of caregivers. So thank you for, you know, reminding everyone to do that. It is really important. I think. I’ve worked with so many families and I know that that’s a struggle when you have a child that has needs every child has needs. And also taking time for your own needs is really important. How many therapies do you have at home each week?
Nina: I always have to count it. I believe it’s seven. We have social work, we have speech, we have hearing, just with early intervention coming into the house. We have physical therapy, we have occupational therapy, we have a DT for vision, that’s six maybe, oh no, we have orientation and mobility, which is another vision just to help her move around in her environment. So that’s seven. We don’t get that every week. Some of those are twice a month and some of those they co-treat. So it’s not seven individual people coming in always at seven hours. And we also do Child’s Voice and we go downtown. She also does some additional physical therapy downtown at a special hospital.
Wendy: Wow, that’s incredible.
Nina: Yeah, it is a lot.
Wendy: It is a lot. So one thing I wanted to, to really ask you about is at Child’s Voice we tend to focus specifically on hearing loss and I think sometimes we get very laser focused on that listening and on that language and sometimes we have to take a step back and look at the whole child. What are some good ways that you think therapists can do that? How can we meet our goals of really developing listening and spoken language but also think about the child as a whole?
Nina: Yeah, I think that our speech therapist through Child’s Voice, Kate, has done an awesome job of recognizing where Tammy is and also Nina has done a really good job. I think that they are just so child focused in their approach towards speech and I think they are aware that Tammy, when she was 18 months old and just started the program here that she was not necessarily functioning as an 18 month old. So they kind of looked at okay, she just learned how to walk. Or she wasn’t even walking when she first came here. But this is what children do when they are at this stage and taking it maybe six months back or three months back and thinking what is appropriate for this child at this stage in their development. So I think they did a really good job looking at where is she in her development. I think that you guys have done such a great job of just listening and just making sure that you, you’ve heard anything I’d have to say about what Tammy needs or what we’re maybe not thinking about when we see her as just a hearing patient instead of all of these other things. I think there’s a lot of great listening when it comes to suggestions and ideas from home as to how we can help Tammy best.
Wendy: How was the decision to move forward with the cochlear implant process? Sometimes when we work with children that have needs outside of their hearing loss, it often delays the process of the cochlear implant because you have a lot going on and sometimes those needs are a little bit more pressing and important than the hearing itself. But what helped you sort of put things in line to move forward with the cochlear implant?
Nina: Oh yeah. I, I think, well I think just like my calendar is the most helpful thing. The biggest challenge we had with the cochlear I wanted it super fast cause I just wanted her to have access to sound. But we couldn’t do it and it wasn’t because of the calendar, but it was because they couldn’t test her so she wouldn’t do an accurate test. So we had to wait until she was developmentally ready to be tested. And eventually when she finally showed that she could do the hearing test then we were able to get started on that route of doing the implant. So that was frustrating. Just waiting.
Wendy: Yeah. I see more heads nodding. That waiting period seems so challenging.
Nina: Sure, it’s very challenging.
Lindsey: I think the testing methods that are available right now are really challenging because they, there is a certain way that testing needs to be done in order to identify hearing loss. But like I think Danielle and I had the same problem that maybe fluid was at play. Maybe our children are at seven months old aren’t responding to a booth test. I mean, which is to be expected, but to wait and wait and wait until the appropriate time is, is really frustrating.
Nina: And we knew, she showed the profound loss on her ABR at birth. So we knew from then, but they still couldn’t implant it until she was able to do the booth test.
Wendy: So that’s a good question I think for you guys to help us as professionals. We work with families that are in this waiting time. What can we do? What is helpful within that time when you’re waiting for like a clear diagnosis or you’re waiting in between hearing aids and a cochlear implant? What is helpful?
Danielle: Looking back it happened so fast, but in the moment it was so slow. Like why do we have to do six months of hearing aids when we know they’re not successful? He’s shown in tests that they’re not being beneficial. So why do we have to wait? And for me, our family individually, like my insurance, the way it all played out, it was like the end of the year. So we had one ID number one end of the year when we switched over in January cause our surgery was in February. So we had to do the process all over again and we already had done all the tests and everything showed this is what we’re doing. But we had to follow the guidelines of the insurance company because otherwise they wouldn’t have paid for it. And obviously that was a huge burden off of us for them to pay for it. But in the meantime, I mean we continued with therapies. We were in baby group. We obviously knew he couldn’t hear, but interacting with other kids, giving the visuals, we used sign language as well. I still use it, basic sign. I mean, I can’t do sentences and stuff, but we do basic signs for the exact reason. Bedtime. Bath time those are the two hard times we now with swimming, which is great, we use the water wear so swimming like we are in the pool yesterday was amazing because now he can hear where we don’t really put the water wear on for bath time cause it’s just too expensive to be wasting every day. So, but we bath time we use sign language and so like continue to speak I guess is where I’m going with this. Even though we knew he was deaf until we got the cochlear implants at 10 months, I talked to him every day. I had talked to him like he was a normal hearing child because first of all, it’s, you know, second nature, like you, you talk. And a lot of people were like, well, he can’t hear you, but we can communicate through that. And I think during the waiting process, just continuing to, to talk and just, you know, do the therapies exactly. Because we did early intervention before he was implanted, before he even had a hearing aids. And our therapist just gave us an abundance of information in DVDs and books. And it was actually, in the beginning, early intervention for us was more and baby group was more parent support than anything. It may have not met his needs right away because he couldn’t hear and we couldn’t do anything with him. But being supportive to the parent was very helpful because it’s a lot, you know, we’re getting a lot all at once. And in that waiting period, you’re like, what can I do next? Like I had all my appointments set up and just like we gotta wait to get to the next appointment. And so just having all the research and the information in front of us during that waiting period was helpful to make decisions and continue to plan ahead to make things successful.
Lindsey: I think similarly for us it was, we were in a little bit different situation where we weren’t sure what the diagnosis was going to be. So we actually didn’t start early intervention therapy until much later. So I think in that initial waiting period between diagnosis to hearing aids to implants, I think it’s a lot of just parent support. It’s a lot of here’s what you can expect, here are some of the things that you can do at home to help yourself prepare for your child needing these therapy services. So talking to Emma was something that we did a lot and it was really good practice because now she won’t shut up, which is amazing. You know, but I think it was really good habit for me to get into to narrate our day even though she probably couldn’t hear what I was talking, but she does lip read and so there was a lot of practice that I think she got in the lip reading aspect of her ability to understand that was helpful. But just supporting parents is really critical because we are doing, a lot of us are doing this for the first time with no experience with deaf and hard of hearing members of our family and just helping us to understand that it’s okay, we’re going to get through this. Here are some of the things that other families have found helpful. So just supporting parents because all we’re trying to do is support our kids.
Wendy: That’s a good reminder because I think therapists sometimes also get stuck in that waiting period of like, I don’t know what to do with the child. They can’t hear anything. But realizing how important our role really is and looking at it outside of the child and really thinking about the whole family. eW could talk all day! Ihave so many other questions I would love to ask. Now we’re in the flow. I’d like for each of you if you wouldn’t mind to answer this and then we’ll get into some questions to see if the audience has any questions. But on the podcast we like to ask all of our guests to tell us a funny or interesting thing that has happened to them. I would love to hear from, from each of you if you have one of those stories to share
Lindsey: I’ll try to piece together something that has been happening at bedtime. So we transitioned Emma recently to a big girl bed and bed time has become a really elongated process and you think you’d go through the story time, the songs you’ve already done bath, you’ve brushed teeth, blah, blah, blah. You’ve done it all. It’s time to take off your devices. I lay her in bed, rub her back and then all of a sudden, what’s the sign for this? What’s the sign for this? You know? So she is just quizzing on what the sign for different things that we saw throughout the day. And so that’s really fun that she’s trying to think through her experiences from the day, trying to figure out how to communicate them and wanting to just drag out bedtime really. But, but it’s fun that she’s doing it in that way. And then singing obviously, but singing at bed time. Yeah, it’s really cute.
Danielle: We’ve started incorporating singing at bedtime because books have been kind of, he’s done with books for a little bit. So we’ve been singing, singing nursery rhymes and stuff and he sings in the car and actually on our way here today and we haven’t been here in a few weeks cause there was break. We turned off the exit off of the highway and he’s like, school and I was like, “school!” He just knows like different landmarks and he’s obsessed with tractors and cars. So like anytime you go past the farm, he’s like “tractor” It’s not really funny, but it’s, I mean it’s just, he’s been able to navigate through all this and it’s just, it’s, it’s rewarding I guess. I mean, bedtime last night was an hour to put him to bed and he knows devices off, but he’ll kind of like, you know, he’ll like do this lean all, he wants to put it back on, he wants to hear one more thing and then he puts it down and bedtime actually is very challenging with the hearing loss because kind of have to shut it off because I mean, we have that capability of doing, shutting off sound for them because otherwise he couldn’t continue to go and go and go and you kind of, it’s quiet time and literally it is quiet time because the devices come off. We’ve embraced this. It’s, it’s part of him.
Wendy: Bedtime is the worst and I feel like…
Danielle: The worst with mom. Dad went in there and put his finger down and laid in bed. I’ve been doing this for an hour.
Lindsey: Yeah, you get to do bedtime this time.
Danielle: I’m like, you’re going to start that time every night because it’s, it, it’s rough. It’s rough.
Wendy: They don’t want to miss any.
Danielle: They don’t, they don’t.
Wendy: Life is too exciting.
Danielle: And he’s just like, I’m just lately with he, his ear will fall off, we call his devices, his ears, it’ll fall off and he’ll just pop it back on or it’ll get tangled in his arm with the cord and he’ll be like, “help, help.” And you put it back on. He can turn them on. So like, we know if he’s not hearing, or he knows if he’s not hearing, cause he’ll take it off and like sometimes they automatically shut off if they fall off in two minutes. Um, he presses them back on and puts him on and it’s just like, it’s, it’s heartwarming. It, it really is that he can navigate his devices at two. And that’s why I’m so glad we, I mean, like I said, we, this whole process early because it’s all he knows.
Nina: All right, I have one for Tammy so one really cute thing she started doing. So Kate, our speech therapist has been working on naming your feelings and, one thing she knows happy and sad and when she has a tantrum she’ll lay down and should go. “I Sad” so now she’s just like, she’s really dramatize the experience of emotion now.
Wendy: That’s amazing, oh that’s great.
Tunga: For me, yeah, the bed timing. The one thing he did last a couple of weeks ago was that, yeah. I asked him if I can take his hearing aid so he can go to sleep and we have a routine of singing all the songs and everything too. And he said, “mommy, I don’t want to take it off. If I take it off, I can ‘t hear you singing.” That was, that was very heartwarming for me. And I’m also, when I take it off, if he wants to ask me question, he’ll ask and then, but then he’ll have to make sure that he puts his ears on my mouth when I speak “he’ll go like, mommy, put your mouth my ears,” you know, and then I say it and he’ll, he’ll understand and he hear it. And you know, so that’s always heartwarming to me every time he does that. Going back to the previous question that you guys were talking about or the waiting to get fitted and everything. I had a little different experience just because me and my husband was in denial of accepting that he had a hearing loss. It took us many months to accept it. It’s hard to talk about it. But yes people offered us, all their services and after the, when he diagnosed, they wanted to do more testing and that he wouldn’t go to sleep, so he couldn’t do the testing and give her like, okay, we have to put your kid to sleep to do to see exactly what his loss is. And I wasn’t comfortable with that. So we actually lost a whole year. Not putting the hearing aid on him and we decided to do it because I noticed that it was challenging for him to hear and speak so that that is experienced that I would like to, to, you know, share with everybody so they don’t lose this whole year of language, all that beautiful thing that happens in the world, you know. So yeah, that, that’s my experience.
Wendy: Thank you so much. He was still getting incredible and love and communication during that time. So it’s not, I’m sure it feels like a whole year of loss, but you know, he’s doing incredible because of all of the things that you have done for him.
Tunga: Yes. We were really like, “no, he doesn’t have hearing loss. He can hear it when the door shuts and opens cause he looks at it.” But I didn’t understand that he couldn’t hear the speaking language, the words, all that. He couldn’t hear it well. So at bed time him telling me that he can’t hear it, that confirmed everything for me that he doesn’t. So that felt really good.
Wendy: Yeah. That’s hard when they’re babies and they can’t tell you that you have to really trust your gut and you have to trust all these people that have come into your life that you don’t know and they’re telling you, “oh, I know, I know what’s best for your kid. I know this.” That’s a hard thing.
Nina: They don’t understand that feeling of loss that you feel every time you get a hearing test back and it’s a drop or something like that.
Wendy: We have to remind ourselves that every appointment is a new journey that you’d have to go on. So we have to sort of step out of our every day, this is what we just do every day. I know your kid’s going to be great, you’re amazing, your kid’s going to be amazing. It’s much easier to say than to absorb. But I think one of the things that, Tali and the group from Beit Micha said a lot when we were there is they talked about meeting families where they’re at. And that was one of the really big things that I brought back here and try to think about every day when I’m working with families. So just like you said, Tunga, at one point you weren’t able to sort of accept what people were telling you, but to trust that maybe that won’t be forever. And we have to really think about when we’re working with families, like we have to meet them where they’re at because if either of us are pushing one way or the other, that’s not going to work well for the family. And then it won’t work well for the child.
Tunga: And I think you guys did a good job, especially everybody’s in early intervention, actually the whole system, the school district and early intervention professionals and professionals at Child’s Voice, it’s amazing how they all work together and know what each other’s do and what their purposes are and gives us a lot of help and support instead the, you know, if you need help, there is this and there is that. That helped a lot and always, it was back in my mind when I decided to do it and I knew who to contact. I knew who to talk to, you know? So really families should trust the professionals, I want to say. Yeah, yeah.
Wendy: Easier said than done.
Tunga: Yeah. Thank you.
Wendy: Thank you so much for being here. Your stories are amazing. And thank you for being so open and sharing with everybody. We’re just so grateful to have you share with us and we’re so grateful to be able to work with your children because they’re amazing.
Nina: And we’re grateful for you guys.
Wendy: Thank you, thank you. We have a bit of time, just a few minutes to see if anyone from the audience has any questions for, our four amazing parents. Saleh?
Saleh: First of all, I want to say. It is so exciting to hear each one of you. It’s just hearing you and I’m thinking about Wonder Woman. Each one of you is a Wonder Woman. And I am sure your kids will see that years from now. Now they can’t say it but I am sure they will know this after few years. And, I believe that God give each of his package. And with this package he gives you strength to deal with all the difficult things that we have and especially the story that you have told about adoption and just proof that you have been chosen to be the parents of these kids cause no one could do it but you. So, I appreciate you and good for you.
Dana: Saleh, you are causing everyone to cry. (Laughter)
Wendy: So, Saleh is a Soical Worker and this is his job, is to make everyone really, really feel their feelings. Thank you Saleh.
Danielle: I appreciate that. And I’m sure all of us as moms appreciate that because we just do it because it’s what mom’s doing is what we do. And I don’t know that we, we hear it enough. That, I mean when you said wonder woman, I, because you know, it’s part of our everyday life and we just go along with doing it because that’s what we have to do with it. So we’re used to, I mean for you, you have, I mean I applaud you because all the appointments you go to, like I keep a track of all my appointments that we do and last year we had 62 appointments that we went to. That doesn’t go anywhere compared to what I’m sure you have. You probably can’t even count anymore. But that 62 appointments that I primarily probably went alone with my child because obviously my husband works. I mean he went with, with the major ones, the activation day, surgery, those kinds of things. But all of the therapies and in between and going to school and everyone, you know, my son goes to school, but I’m with him the whole time he’s at school. So it’s not free time for us like people think. So I mean, I wouldn’t have it any other way. I wouldn’t it any differently. But it’s nice to be noticed. That, you know, that we do
Nina: Because no one else notices.
Danielle: It’s, it’s hard.
Lindsey: I think it’s helpful too. I think it sounds, I haven’t met, I met Lucian, but I haven’t met your children. But it’s so it makes it so worth it. You know, when we see the success that our kids are having, the progress that they’re making. And I mean, we’ve been at, we’ve been on break for the last couple of weeks and we just saw Tatum, who is one of Emma’s therapists in the Chicago facility, and she’s like, “look, listen to all of her language,” you know, and being with them every day, we don’t necessarily see the leaps and bounds that they’re making, but just knowing the success that we’re, that they’re having. And their growing ability to speak and communicate is it just makes it all worth it. I haven’t counted. We’re probably okay somewhere in the 62 range.
Danielle: I [inaudible] reimbursement.
Lindsey: Emma’s got a couple of other factors too and we, we see therapists for that, the two and different, different specialists. So it is definitely a lot. So thank you for your comments.
Zvia: I have another question. At the beginning when you’re all overwhelmed with the, the knowledge that your child has a hearing loss, I suppose every parent wants his child to hear and speak. And this is the first thing you think about before signing. My question is, as a professional, what would be your advice for us as professionals? What would you like to hear from us at the beginning? Would you like us to tell you about the whole possibilities? Would you like us to expose you to many possibilities? I’m very interested in getting your opinion about that.
Wendy: That’s a great question. Thank you for asking that.
Lindsey: Yeah, that is a great question. I’ll go, I think that one of the things that was most helpful for me after I grieved. Once we got Emma’s diagnosis, I’m gonna start crying about it. Once we got her diagnosis, I did everything. I made the appointments. I figured out what specialists you needed to talk to and then I just lost it, you know, for a good day. I lost it. Thank you for the tissues. But then what was really helpful was people came out of the wood works and they started saying, I know this family that’s been through this. I know this family that has a kid who’s 18 and she’s on, you know, she’s playing lacrosse and she’s on honor roll. And hearing those stories just like were really important for me to hear because you don’t know what their future is going to be. You don’t know. I didn’t know any kids that were deaf or hard of hearing. I didn’t know what her future was going to be. And then to have, I’m sorry, I’m not usually a crier. And then to know that it’s going to be okay. So I think as a therapist and professionals to let us grieve, let us mourn, but also let us know that it’s going to be okay and that I think that parents will let you know when we’re ready for those things. Because if somebody had called me the same day as I got the diagnosis, I would’ve been like, thanks. I don’t need it right now. But when I was ready for it, thank you. Water works up here. But when I was ready, I was so ready. I was just ready for all of the information and there were so many people that were, willing to share their stories. And that’s one of the reasons that I feel like what we’re doing today is so important is, is helping to talk about the fact that it’s going to be okay, you know? But at the same time, grieving was really critical for our process, for my process. And then, and then just give me, it all can, give me all of that information, then I can dig into it. But it did. It took me a minute to grieve what I perceived as a loss. It has become so enriching for Emma. It is not a loss at all for her, but for us it was something that we needed to mourn.
Wendy: But it is incredibly helpful for us to know that, to hear that, to hear that we have to, again, look at the whole family. We have to meet everyone where they’re at and we have to, sometimes it’s hard with therapists. We want to fix everything, right? Like we want to come in right away and fix it all. But I think we have to learn how to be uncomfortable and just sit with grief and sit with families and, you know, go along the journey together. Thank you so much.
Dana: I wanted to ask and maybe it’s super personal and so I feel like sometimes I see parents who are having hard time relating to the kid and maybe it’s that grieving period or maybe it’s the period that you haven’t accepted it yet. I’m not sure. And I guess for each it’s, it’s different, but do you have any advice what we could do to try to bond the parents with a child or a parent who is having a really hard time seeing the progress and maybe to point out like the positive, although like it’s probably like you said, maybe it’s appearing that is hard to accept the whole situation. But for us as professionals, it’s also maybe even frustrating because we, like you said, we see the other side, we see like, oh my God, it’s amazing kid. And so maybe just like small baby steps or small gifts. Like we said before, that we can enlighten or help the parents see his child in a better light.
Nina: I feel like the biggest thing you guys do to help us is the modeling of the proper way to work with the child. So I’m like constantly like watching the therapist closely and I know not every parent does that. It sounds like some parents are more involved during the therapy than others, but encouraging that involvement and one of the things the physical therapist does with me is I’ll watch her do something with Tammy and then she’ll say, now you try it. And she’ll like make me do it so I cannot passively just watch it and be like, oh, I’ll do that later when she’s gone. So she makes me do everything. I like it when somebody gives me a very small amount of homework, like says now this week, work on this one thing and maybe it’s that one thing for like a month or something until I feel very comfortable with it. And then it’s a part of my routine or showing me how I can do it as part of the routine. Like when you wake up, just do this or when you do lunchtime, try this or just one small little thing. I think that a lot of parents just need the modeling. They’ve never seen it before. You know, they’ve never seen someone interact with a child who is deaf and hard of hearing and they don’t know how to do it. So maybe they just need the modeling and like the small, not too not overwhelming homework because I get a lot of people coming to my house telling me a lot of things and I don’t, I don’t remember anything. But when I hear just a little thing and then repeating it to me the next time, cause I forget it over the course of the week cause a zillion things that happened. I like to be that. I like to be reminded.
Danielle: I think just the continued encouragement. I mean not to be like it’s going to be okay type of encouragement, but just like, you know, we’ll, we’ll get you through this. What, what kind of resources do you need? What can we do to help you facilitate through this, those kinds of things.
Sharon: First of all, you are so amazing, your stories are so moving. And my question that is, you spoke about so many different kinds of therapists. What about social skills and emotional?
Nina: We do get social work every week. I feel like I try when she comes into the house, I started to like, as if she was my own therapist. [inaudible] Talking to her about this is what’s happening. But yeah, she’s, that’s the only person who I’m just like telling about all of my personal needs as the parents. We do give social work, which I think is helpful with the play skills and the interacting. I am worried as Tammy gets older. Luckily she has her twin sister who I think conservative as like a conduit to kids who are hearing. Yeah, I don’t know what will happen when she hits the teen years and the middle school years, which I think sound like the most awful years of our lives when it comes to social and emotional connections, I think that that’s I had just read the other day that kids in middle school who are deaf and hard of hearing, they don’t get bullied a lot, but they do have sometimes have a hard time finding a friend. So people are friendly but not necessarily a friend so it can be lonely for them. So I worry about that mostly as she gets older, but not right now as a child. Cause I think they’re all kind of on the same level.
Danielle: Right, I agree. Our kids look different because they have something on their head, you know, and people stare and people point.
Nina: Or ask questions.
Danielle: Exactly. And you, your fears that your kid’s going to get made fun of or bullied.
Nina: [inaudible/overlap talking] asking just a lot of annoying questions.
Danielle: But being here, socializing with the other kids that look the same I think has been great. For my son, he’s got cousins who are close in age who, you know, he can socialize with. But as for, I mean he’s only two, so we haven’t really, this has been our, our socialization for myself and for him to be with peers his own age and to interact with other kids and, and for me to see what other parents are doing to, to help communicate I think has been, has been helpful. I think socializing just along with a therapist and you know, I’m pretty close with our therapist. I’ll text message and shoot them an email and it’s been great. It’s, I mean, they’re like family. I’m actually really sad when early intervention ends for us when he turns three. I don’t know what I’m going to do without our therapist at home. I mean, she’s going to have to come over just for my sake. Because it is family and that’s our socialization is parents to sit and unload and talk about our needs.
Wendy: Any other questions? I want to thank you all again for being here. I think I found that the episode name “Wonder Women.”
Wendy: Thank you so much for giving this opportunity for everybody.
Panel: Thank you for having us.
Kiersten: Thanks for listening. Be sure to join us for our next episode in two weeks on October 2nd. Wendy & Tatum will be having another great discussion so don’t miss it!
CV Students: BYE THANKS FOR LISTENING!