All Ears at Child's Voice PodcastOn Episode 23, we share part one of a two-part conversation with Molly and Linda. Molly is the parent and Linda is the grandparent of a toddler named Lucas who uses bilateral cochlear implants. Molly and Linda share about their experience first learning of Lucas’s hearing diagnosis shortly following his birth, his family’s decision to pursue cochlear implants, and their early experiences with audiology and Early Intervention services. Throughout our conversation, Molly and Linda reflect on their relationships with Lucas and each other as they supported one another throughout the early stages following Lucas’s diagnosis with hearing loss.

Resources

In the episode, Molly shares that the cause of Lucas’s hearing loss was congenital CMV. As CMV is not the focus of this episode, we do not share much information on CMV in the episode. If you would like to learn more about CMV, visit the National CMV Foundation.

Updated Podcast Schedule

At the start of the episode, Wendy shares about our new schedule given the changes Child’s Voice has recently gone through due to the spread of Covid-19. While we are currently not following a set release schedule, we will continue to air episodes of the show as we are able to produce them so be sure to subscribe to the show wherever you listen to not miss future episodes!

We Want to Hear from You – Send in a Voice Memo or Email

We are currently working on an episode featuring our listeners, our staff, and our fellow colleagues in hearing loss. We would love for you to share with us about anything related to how or what you are doing during this time of Covid-19.

We would love to hear from you about…

-Activities you are doing at home as a family. This could be anything. Activities that promote speech, language & listening skills; activities that help you bond as a family; activities that keep you or your kids active and entertained; activities that keep the kids busy for those times you may need a break.

-What you are doing to promote your and your family’s mental, physical, & emotional health.

-Positive stories from your community. You may know the Mr. Rogers’ quote: “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’” What ways do you see others in your community being a helper at this time?

-Any comments or anything else you would like to share with our listeners.

We would love for you to “call in” to the show via voice memo (instructions below). We also welcome emails at podcast@childsvoice.org or feel free to reach out to us via social media.

 

How to “Call In” to the Podcast

Step 1) Visit the links below to learn how to make a voice memo using your cell phone.

Use the Voice Memos App on iPhone 

Voice recording on an Android smart phone and transferring audio files to a computer

Step 2) Record your voice memo in a quiet room with limited background noise. Please state your name, where you are calling from, and who you are! Try to keep your voice memo under five minutes.

Step 3) Email your voice memo to the podcast email: podcast@childsvoice.org.

 

Where to Find Us:

-You can email us at podcast@childsvoice.org.

-Follow Child’s Voice on Facebook, Twitter, & Instagram: @childs_voice

-Follow Wendy, Tatum, & Elise on social media: @WendyDetersSLP, @TatumFritzSLP, @ms_elise_sunshine

 

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.

Episode Transcript:

Wendy: 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 Wendy Deters, the cohost of this show. Tatum and I wanted to start off with a couple of notes. We hope everyone listening and their loved ones are healthy and safe. This has been an incredibly challenging time for us. It has been hard on us both personally and professionally. But our staff has done an incredible job of staying in touch with our families and providing excellent educational and emotional support for our children and their families through eLearning and Live Video Visits. As for the podcast, you are about to hear Part 1 of a wonderful chat we had with an amazing mom and grandmother about their journey with hearing loss. Part 2 will be coming out soon. Our schedule over the next few months may be a bit different as we all learn how to work and live while sheltering at home so please check back in for updates. We would also love to hear from you listeners! Please leave us a voice memo message about anything related to how you are doing during this time of COVID 19. It can be anything from ideas to develop listening, speech, and language skills at home, fun activities to do outside, ideas for taking care of our emotional needs, or just comments you want to share. You can send these memos to us at podcast@childsvoice.org. Again, we hope you are all staying safe and healthy. Please enjoy the show!

Tatum: 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. We’re your hosts. I’m Tatum Fritz

Wendy: And I’m Wendy Deters. This week on the show we’re joined by Molly Latza and her mom, Linda Reimers. Molly is the parent and Linda is the grandparent of a toddler named Lucas with bilateral cochlear implants. Molly is an English as a New Language Resource teacher in Round Lake and Linda recently retired as a cancer data management consultant and is now called “Mimi” by her seven grandchildren. Molly also has four girls at home, ages 17, 14-year-old twins, a four-year-old and an almost two-year-old, Lucas. Linda and her husband, Pete, spend as much time with all of their grandchildren as possible. Lucas receives early intervention services at home so both Molly and Linda are active participants in his services. Molly and Linda, thank you so much for being here today.

Molly: Thank you for having us. We’re very excited to talk about Lucas’s journey and our own personal journey as well.

Tatum: We are excited to have you both on today and I’m looking forward to learning more about Lucas. I know Wendy knows both of you a little bit already, but I’m excited to find out more about him. So you may have heard on the show that we like asking our guests every week for a story from the past week, so it could be anything, something cute, something funny, something heartwarming. Do either of you have anything that comes to mind?

Linda: I would say that probably the most heartwarming thing in the last couple of weeks is that Lucas has learned to say “Nini.” It’s not “Mimi” like the other ones, it’s Nini. He always says that two times in a row and quite loudly. So we are very pleased with that because I began thinking I was going to be Grammy, but the older grandchildren, which I didn’t realize, but Gram is kind of a hard thing to say. So it turned out to be Mimi, so now I’ve become Mimi.

Wendy: That’s so sweet.

Tatum: That’s exciting.

Molly: I would say this week Lucas has always wanted to follow what any of his siblings are doing. He is a little parrot, I would say, in his actions and his words and the older girls are very interested in getting him to say funny catch phrases of theirs or actions or little dances. And so right now they are working on him to give the peace sign. Both fingers or both hands around his face and they just want him to come up and I’m not sure what the phrase is or why they want him to do that, but they are working really hard on that. And, so yeah, he’s very proud of himself when he does whatever they want him to do.

Tatum: I love that. I’m always trying to come up with like more gestures to target in therapy and I’m not good at like coming up with more actions to imitate but that’s awesome.

Molly: Yeah. They like to do that. One of the twins puts her hand out, just kind of like open face and he puts his cheek and his chin in her hands and then she squeezes his little cheeks. So she just walks by and sticks her hands out and he will put his head right in her hand just so she can squeeze his little cheeks. So that is their symbol that they do for each other, signal.

Tatum: That’s so cute.

Wendy: That’s sweet. It seems like he’s got a different relationship with each sister.

Molly: Oh, very much so. And he is working very hard at learning all of their names because when you have twin sisters that are identical, you learn one name and use it for everyone. And it’s Ashley and Ava, but he can only say “Ashy.” So you would think that Ava, he’d say that. And when he does, it’s Ada. So it’s close, but Ashy is very much more pronounced.

Tatum: That’s so cute. I’ve never thought about younger kids learning like twin names.

Wendy: Thank you. Those were, those were sweet stories about him. So let’s kind of start at the beginning. Molly if you could kind of start us off just sharing a little bit about the beginning of your journey, like when you found out about Lucas’s hearing loss.

Molly: Absolutely. So Lucas failed his newborn hearing screening in the hospital and based on the results that I had during my pregnancy and different tests that I had done, I was adamant that they rescreen him and test for CMV. Most of the professionals told me not to worry about it, that kids fail hearing screenings in the hospital. They’re not full proof. And not to be nervous and that it’s common. But I was very adamant and I knew and I said, “No, he is tough. You need to rescreen him.” So she rescreened him as many times as is allowed, which is three, in order to qualify to be tested for CMV. So at six days old we knew he was positive for congenital CMV. It took me some time to get an appointment at Lurie’s audiology department. But I truly believe that everything has happened because of that first appointment and because of Carrie Sanders. So I remember holding him during the ABR and watching nothing register on any of the monitors. I remember staring into Carrie’s face and watching her through the monitor or through the double screen. And then also when she was in the booth with us and I can remember sitting in the office watching her hand me the forms for Child’s Voice. It was at that very first appointment and I believe that if she had not been informed audiologist or sent his file to be screened for Early Intervention or connected me here with you guys at Child’s Voice, nothing would have been accomplished as quickly or as well as it has been done. She has answered every single time I called. She kept him on track to get hearing aids before he was even two months old.

Tatum: Wow.

Molly: She had his first screening with Denise Thomas at six months and guided me to cochlear implants. She was informed about all of the options and did not push any of us, but she wanted to do what was best for Lucas. And I felt that in every time I met with her, I wish I had known how important she was going to be during that time so I could have thanked her in person. I’ve seen her a few times now that she no longer is his audiologist. But she really helped me with my acceptance of Lucas’s diagnosis as well. And I wish that every audiologist was as informed as she was.

Tatum: Aw, I wonder if she listens to the show.

Wendy: I’m gonna make sure she does now.

Tatum: Yeah, we’ll have to tell her.

Molly: Yeah and I’ve ran into her at different things. And I always want her to be working when Lucas is there for an appointment so she can see him and see his progress as well because she told me she never gets to see that because she only does hearing aids. She screens them with Denise and then they go on to a different audiologist. And so she never has that opportunity to follow up with the kids and to see what has become of them.

Tatum: Yeah.

Molly: And so one day we will both be in the same office at the same time and it’ll be a great time.

Tatum: Just to clarify for our listeners who are not familiar with Lurie’s, could you explain a little bit more in depth why you switched over and who Denise is?

Molly: We switched over to Lurie’s once, I guess not enrolled, once he became part of the infectious disease department there. They then handled all of his appointments. So then we met with the ENT doctor. We met with the ophthalmologist. We met with the neurologist and then they said also well you can come to our audiologist as well. So it was just easier for us to be more cohesive if all of his physicians were going to be there as well. I wanted the audiologist to be associated with them as well. Denise Thomas is the director of the cochlear implant program there. She’s also an audiologist. So she and Carrie worked well together during that time.

Wendy: One more question real quick about that beginning part of the journey. How did you know to ask to be screened for CMV?

Molly: So I had markers in my very first ultrasound and my blood work and so they never knew why I was having certain screeners and testing like pop for different things and why on his ultrasound they saw like an echogenic bowel. This is one of the signs of CMV for babies that are in utero. So when I went to a maternal fetal medicine doctor, he ruled out spina bifida, Down Syndrome, all of those things. And he said, “Well the only thing it could be is just a fluke or it could be a CMV.” I tested my blood work and I did not have an active infection of CMV at that time. I had previous antibodies. So at that point everyone assumed that the baby would be fine cause it was not an active infection. But Lucas…

Linda: …is exceptional.

Molly: Yes, he likes to be in the low percentage of everything. So I think it’s something like 97% of people who just have the antibodies don’t ever pass it to their children. Lucas, I passed it to Lucas. So I had researched CMV just based off of my own experiences and one of the causes of deafness is CMV, congenital CMV. So as soon as he failed that newborn screening, I was very, that popped in my head and I was very much aware and I said, “No, no. rescreen.” Luckily the state of Illinois is one of the states that requires newborn screening and also to test for CMV if you have failed it multiple times.

Tatum: Yeah. You mentioned earlier the three referral lead to the CMV.

Molly: …to the CMV and our pediatrician would have tested as well for CMV if he hadn’t had failed at three times, just because I had called the pediatrician and said, “Hey, even though I don’t have an active infection, I did have this previous antibodies. Do you think we should rescreen” and it all kinda came apart at the same exact time. They were all like, “Okay, yes, he failed three times. You’ve got it.” And they agreed to do it. Yeah,

Tatum: Yeah

Wendy: Sounds like a lot to deal with. Even prior to his birth.

Molly: Well, yes. Yes. It was, very, … what’s the word I’m looking for?

Linda: Roller coaster.

Molly: Yeah. I would say it was a very unique pregnancy. It was not a normal typical pregnancy.

Wendy: So Linda, you know, our, our main sort of topic, the reason why we had both of you guys on today is we wanted to talk about sort of families and the role of not just parents but grandparents as well. So if we can go back to you, and go back to the beginning with you, tell me, can you share with us, like what kind of experience you went through at that time for yourself as a parent and a grandparent?

Linda: Well, we were definitely concerned, you know, each time she had another test, well, like, what’s that gonna you know, bring for us. I went with you, I think for one of the ultrasounds, which was looked pretty good. Some of the worst things were ruled up with that one. So that was encouraging. But there’s always that concern for your child and for your grandchild. The CMV, I called CVM for quite a long time, but I got that in my head. But right before Lucas was born, the person who was cutting my hair’s good friend had a baby born with CMV, never knew anybody else ever in my entire life to ever talk about that. And she had said that that baby was deaf and I called Molly, “I’m like, is that what you have?” And Molly just kind of avoided that, you know, a little bit. And then, you know, once Lucas was born and we were worried about Molly too, you know, we wanted her to be safe and it wasn’t the easiest delivery, even though it was a C-section. That didn’t go perfectly smooth either. So it was a rough time. It definitely was.

Wendy: So for our listeners, just to clarify as well, we… CMV stands for cytomegalovirus and we don’t have time to get into all of the details of that today. Tatum and I have some plans to do a whole episode on it. So we will link to some resources in our show notes, but that’s not going to be the main focus of our discussion, so we won’t go too in depth on that today.

Tatum: Molly, I heard you mention when you were talking about Carrie how she helped you accept the diagnosis? How was that for you and then Linda, how was that for you? So maybe Molly first.

Molly: I think accepting it and coming up with a plan are two different things. So I had accepted it from the first day that he was born. I did not believe that it was a false negative on that newborn hearing screening. So from that very moment, I think my mindset in my brain was already working on that. With each stage I had a new level that I needed to accept. So it was first, “Okay, we have the official diagnosis of severe and profound hearing loss. Now we’re going to explain that to other people and we’re going to talk to them.” Then it’s, “Okay, now we’re going to learn how to do with hearing aids and work with those” and accepting that that may not work or that may not show a lot of reaction from Lucas. And then it’s the cochlear implant and accepting a surgery and more therapy. And I was not sold on cochlear implants even the day of the surgery. Now I know that we were going to have surgery. This was what we were there for, that is what we’d been working for. But I don’t think that I had settled it in my own heart and in my mind until after that surgery. And I think that that’s something that every parent will feel is that you know that this is what you want for your child. You know that this is a positive for your child. But at the same time, it is a life altering decision that you are making for someone else. And that responsibility is on me and my husband, Matt. It’s not like we didn’t do this together. So I think that with Carrie, she just laid it out to me to accept that this is the path that you can take. And it wasn’t that she only recommended Child’s Voice. It wasn’t she only recommended cochlear implants. It was these are paths that you can take. As a parent, you need to choose a path and you need to be proactive and sitting on this information for three months isn’t in the best interest of the child. So it is an X, Y, Z. If you want to do this, here’s the path you can take if you want to do this, here’s this path. And I think that that helped because it was very task oriented in the matter of, she told me she was going to send his file to Early Intervention, I should expect a phone call from them. When I didn’t get a phone call back from them, I said, “Oh wait a second here, I need to get a phone call.” And they’re going to help me as well. And I don’t know what Early Intervention is going to look like yet, but I know that they’re going to call me and they’re going to come out. And so I need to just focus on each appointment and each screening that they would do for the next step. That’s kind of like how I accepted it.

Tatum: Yeah, I like that path metaphor.

Wendy: Thank you so much for saying like that you didn’t totally buy into it even at the surgery. I think that is one of the braver things I’ve heard a parent say because I’ve bet so many parents feel the same way. But that’s a really hard thing to say.

Molly: Right, right. And there is still doubt of course up until that moment and even during the surgery and Lucas has had many surgeries. So each time it you feel a little bit different and you get more comfortable with it, but at the same time you never know for sure if you’ve fully accepted something. And I think with each stage of Lucas’s life we’ll have to come a new acceptance level for him and also for us. Right now he’s very protected. He’s very much in a family bubble. Yes, he goes to daycare and yes, he is in swim lessons and he’s out in the public and you know, it’s not like he only sees his family, but he is very well protected at this point.

Tatum: That is brave. I can get that sense from some of my families before they go in for the surgery that they’re feeling like that, but they don’t articulate it. Yeah. But yeah, the way you explained that, it makes me think of other families.

Wendy: Linda, how do you relate to that feeling of not quite, you know, having to go through like an acceptance process?

Linda: Well, Molly’s really brave and she keeps a lot of that inside. So as we kind of talked earlier, there’s going to be things Molly’s going to share that I have no idea had come into her mind because she protects me probably to a certain degree and she’s always been very independent, makes her own decisions and she does a good job with that. I think for me, when that information came, and I think it was after that infectious disease visit, there was the Child’s Voice pamphlet, there was the graph that showed that he was severe and profound, which you, you kind of pointed out, “He’s not here, mom. You know, he’s down here.” And then in the brochure it talked about grieving the loss of your child’s hearing. It was a whole section on, to me that validated that that’s what we’re doing. We’re grieving that loss of his hearing. Not that he’s, you know, not going to be a wonderful little boy. And then the other paragraph was about handling or accepting or realizing the grief of the grandparent. And my first thought was that’s not her burden. That’s ours. And I don’t know if it talked about how you’re supposed to explain this to other people and, you know, how much detail. Some people want to know a lot. Some people don’t care. But when I read that, “I’m like, okay, you’re right. I’m grieving something, but that’s my grief. That’s not, you know, Matt and Molly’s grief” and I want to support them. But, you know, they were the support for each other more than I would say, you know, anyone else, which is the way it should be.

Tatum: I love that.

Wendy: I’m so interested where was that.

Tatum: …the brochure?

Molly: Get the brochure and the information. I’ve kept everything.

Tatum: Was it something Lurie’s gave you or…?

Molly:I believe it was something that came from the Lurie’s audiology department. I’m telling you, I walked away from that meeting with Carrie with so much information and so much material to look through. And I mean, she also signed us up for the T..S..C…DSCC.

Wendy: Department of Specialized Care for Children.

Molly: For children ut of UIC, that acronym. She was very well prepared and said, “Okay, you don’t have time to think about these things. Just sign this paper, this, you’ll want this here. You’ll want to release your information to Child’s Voice. You’ll want to release your information to Early Intervention.” And from what I’ve heard from other people, it’s not that way. A lot of parents and families are left out there to fend for themselves and to learn this information. And there’s no way that a family, who is grieving, caring for a newborn, and continuing on with their life with four other children, would have been able to do it all. I needed someone to give me the roadmap and to guide me along that way.

Tatum: So it sounds like the brochures were helpful in telling your mom, but do you remember that experience of explaining?

Molly: I do remember explaining the news to pretty much everyone. I really remember explaining it to the girls as well. Because at their age, they were 12, 15 years old and they had questions as well that matched like their age and their maturity level and trying to explain it to a 12-year-old and a 15-year-old without getting into the science behind it all. But they’re old enough to understand that this is something that happened because of CMV and explaining that process to them. And then you also had Charlotte who was two at the time and explaining to a two-year-old that it wasn’t that Lucas was a baby that he couldn’t hear. She was very much under the impression that when he grows up, he will hear, all babies wear hearing aids because they can’t hear. And so going through that we had to explain it multiple times to the children as they’ve aged as well. You give them more information, they learn new things. Matt pretty much handled telling family members. I did not do that. Mostly because I don’t think I had the words to describe it at that time. I also was very ill after giving birth. So I was not in any state to be able to talk to people. So Matt was very matter of fact and just laid things out because in our minds if you tell people not enough information, they’re going to jump to their own conclusions. So Matt did not give any feelings to it. He just said, “Lucas failed his newborn hearing screening. We have to follow up in a few weeks.” Then after that, “Lucas had his ABR, he was severe and profound loss. We are going to pursue cochlear implants.” Like in his mind he just stated facts for everyone. And let other people ask the questions and kind of come up to their own conclusions. But he mostly handled telling family members. I don’t remember telling anyone about that.

Linda: No. You had said that’s just a little too hard to go through it over and over and over.

Molly: Yes.

Linda: That, you know, that got old. And I think when you came home from that appointment, we were, all the kids were there and dad and I were there and I think Ava said, “will it ever get better?” That said volumes to everybody in the room. And then Charlotte did say to me several times, “When I was a baby, I couldn’t hear either.” So it was too hard for her.

Wendy: Yeah, sure at two.

Molly: And to like the girls, we had to explain things to them, not as we would explain to an adult, but as a teenager and to process this about their brother and to see their dad and I having reactions and feelings as well and people coming over and crying, and they’re like, but it’s Lucas, he’s a little baby. Why are you all crying over him? And explaining that to them.

Linda: Complicated.

Wendy: Yeah, for sure. Absolutely.

Molly: I did write something here about, having to explain it to my mom in particular.

Wendy: Oh, that was gonna be question. My question is that’s a lot. I mean sometimes we as professionals have trouble answering questions about all of this because they’re big questions. How did you do that? Having just the limited amount of information that you had?

Molly: So first of all, I don’t like to show my mom my emotions. I would say out of anyone, she is the one that I show my emotions to the least.

Linda: I agree.

All: *Laughter*

Molly: I also struggle with the answering questions when I’m struggling myself. So if I didn’t have the words to explain it and someone would ask me a question, I would become very defensive and rude in a manner because I can’t answer them myself and I’m still processing it. But I wanted to educate people so that they would understand about cochlear implants and being deaf and raising a child who is deaf. But I didn’t want to always be the one to give that information. So I would try to answer as bluntly as I could without showing emotions, because if I showed my emotions, then they would react with feelings. And I didn’t want their feelings. I didn’t want to know how they were feeling themselves. I wanted to be able to process it on my own. It’s also important for me that they remained grandparents first, siblings first. So I needed to them to be informed so that they’re not scared to use his hearing aids or his implant devices. But at the same time let them know that that is not their task when they are there. They are grandparents first.

Wendy: Did you say that?

All: *laughter*

Molly: Oh no, no, I would never say that.

Wendy: So how’d you figure that out cause I…

Linda: Oh, she told us.

Wendy: Oh, she did.

Linda: There were times when she said, “Don’t worry about that. Just be his grandma.”

Wendy: Did that feel good? Did you want to just be as grandma or did…

Linda: I think that’s always a good reminder. When you give me a task, you see how driven she is. If somebody said, you know, something with the therapy, I would felt like, “Oh my goodness, I gotta remember to do that everyday and five times a day.” Molly was like, “No, you just be grandma. And if you can incorporate that into your daily time with him, then that’s, that’s the right way to approach it.”

Tatum: That’s so nice. Even working with parents, like as therapists, we should remember, you should also just be the parent.

Molly: Yes. And I read somewhere that therapists can accompany you to a park or play outside or meet you at the store or if you wanted to. And those all sounded really good ideas, but then I read a comment that then going to the park is not a fun activity. That’s therapy because when you’re at the park, you think of everything that that therapist told you you could be doing. And yes, you could be doing a lot of things or you could just be letting them run around while you sit on a park bench.

Linda: I never got that. I always thought you said that because Lucas would think I go to the park, I have to have therapy. It was really me.

Molly: Yes.

Linda: Things you’ll learn every day. Good point. Definitely important.

Wendy: So did you then Linda, do some research on your own at that time or was it just kind of like this is the information they’re giving me and, or how did, how did you learn?

Linda: I did a little bit of Google search, but I’m really crush con cautious of what sites I would use. As they decided to use the cochlear implant route. They had the different brochures from the different companies. Still didn’t spend a lot of time until I know what knew what company they were going to use. And that’s the one I wanted to know the most about. But somewhere in that process I had a friend who was doing their continuing medical education and she was a nurse and she chose the one unbeknownst of our situation about cochlear implants. So she gave me the PowerPoint. So then I got to learn a lot more of the technical parts without really having to ask anyone. I had it to reference, you know the great grandma had questions or the great aunts had questions, I could explain it to the level that they were interested in. But I don’t think that you and Matt explained as much to me about how it worked. That I think I kind of figured out on our own. Again, didn’t want to add another thing to what they were responsible for doing.

Molly: And I know Matt and I took different approaches in how we were doing our research on the different companies. Matt wanted a comprehensive study, statistical information and he knew I was not going to ever give him that information, nor would I look that up. So he went to his mom cause his mom knows that’s what Matt needs. So she did her research to match what he wanted. And that was their conversation and he had that on the side as Matt and I were meeting with each representative from the different companies and things like that. One thing that we appreciated with my mom is that she watched the kids while we met with the different companies. And so when we would come home, we would have the conversation and we would kind of rehash things and she would be in the room and we weren’t, she was not included in the conversation, but she was there listening. And sometimes just that talking out loud helped us process it. And my mom was really good at agreeing with us and then when we change our mind agreeing with us again, so we knew that if we said something to her and then changed our minds, she wasn’t going to be like, “Well, last week you said that you really liked that feature of that brand.” And so I think that you learned a lot from us and not that we were trying to keep it from you, we wanted you to be there as a absorber instead of just as a questioner.

Linda: I also thought it was very interesting that you met at Starbucks for these really important discussions.

Tatum: Oh, with the implant companies. Yeah, they’ll come meet you…

Molly: Yeah, we just met at Starbucks.

Linda: I’m like, are you really talking to somebody about implants? Are you just going out on a date?

Tatum: The different like customer service reps like met you, where’s most convenient for you?

Molly: Right. And they would just say, “where would you like to meet?” Or they would maybe, I think some of them gave like options like “Oh I see based off your address, here are some locations, would you, would any of those work for you?” So that was very helpful and we got better at it. The more, I guess we only met with two companies, but our second company was much better for us, cause we were more informed on how to ask the questions and what to receive as well.

Wendy: I’m sure you had a ton of appointments around that time as well. It sounded, it sounds like Linda, you were spending time with the other siblings or did you attend some of the appointments too?

Linda: No we call ourselves the Latza shuttle or the Latza fun. We spent time with everyone else so that they did have that time and you know, it’s a family of five. There’s a lot of activities, especially the big girls and bedtime and all those things that you want to keep a schedule as much as you can.

Wendy: Yeah, that must be really, really busy figuring out everybody’s…

Molly: It depends on the week.

Linda: And it changes.

Wendy: Well you have to live week by week. It sounds stressful.

Molly: Yes.

Tatum: Did either of you, before this process, have any experience with cochlear implants? Like we’ve talked a lot about deciding between like the different manufacturers, but just being able to envision a cochlear implant, how did you come about that? Had you seen someone with one before? Was it brand new?

Linda: I had no experience with it at all.

Molly: In education I had had students that wore hearing aids and I had worked with a hearing itinerant in different settings within my job. So that would be my experience with it. I did not have any students who had a cochlear implant. Hearing aids and a BAHA were my only experiences in a professional setting.

Tatum: Okay, so we’ve talked a lot about the beginning process, getting diagnosed, choosing to move ahead with cochlear implants. We’ve kind of alluded to you signed up for early intervention but we stopped there. So what were the next steps in terms of the therapy side of things?

Molly: So Lucas qualified for a hearing therapy, speech and eventually, physical therapy and feeding therapy as well. So at one point he was having four therapies a week and a deaf mentor twice a month. Matt and I are both full-time workers. We have four other children and in order to maintain our jobs we could not fit all of the therapies in, in the evenings. So we are very fortunate that my parents come to the house twice a week and some of the therapies are there when Matt and I are not home. Some of them go on, they start and then they finish when we come home in the middle of them. And then some therapies, Matt and I are just present for it in the evenings for. So it is very different type of therapy because it is at the home and it does involve the whole family. And for us that involves the four children, grandparents, and our daycare provider as well has participated in this session.

Linda: Yeah, I mean I think that you did a really good job of getting it started as soon as possible and figuring out a schedule that all of us could accommodate and the therapists their own schedules and when could they fit Lucas in and you know, where you lived. So there were times when we had a couple therapies in the same day, but we’ve been able to spread that out cause that was, that was difficult for Lucas and it was difficult for us in that there was such a schedule to keep track of, you know, he needed to eat, he needed to nap, he especially needed to nap between the therapies. We kind of wanted Charlotte to be at a place where maybe she could go do something different or if we could. So that was, that was an effort just to get that worked out and it’s changed.

Molly: And it changes from the summer to the school year as I’m a teacher. So I have a lot more availability in the summer, but then that’s also, people want to take vacations. And so Christmas break is a great time for me for extra therapy sessions, not so much for other people. Lucas has had therapy since he was four months old, I would say. So he does not know any different. The girls don’t know any different.

Linda: Charlotte loves when it’s therapy days because they bring toys.

Molly: But I do think that it’s been difficult at times in in like small ways. There’s an element of control that I had to give up because when he started his therapies, it was the summer I was home, I met everyone, I learned everything. And then I had to be comfortable to go to work and have someone else there. I wanted to make sure that my mom and dad focused on being a grandparent first. And it can be very overwhelming to them as you have multiple therapists telling you multiple strategies or skills to work on in the same week. So in that regard, you, well you never had feeding therapy. We did all of that one. But the physical therapist is saying do these stretches when you change his diaper, then the speech pathologist is saying every time you change his diaper, sing Itsy Bitsy Spider. So now, changing the diaper has become an ordeal and has extended the time of changing a diaper because everyone wants us to use that time. So I wanted her to see that just her typical interactions with Lucas were going to be enough, that the things that we needed to adjust in our life were not monumental and not extreme. We are good parents, we are good grandparents, we are a very verbal family. We already narrate everything we do. We read books and so I just want her to be more aware of that she was doing a good job and that she did not need to listen to every single thing they say. Because when you’re having every therapist telling you what to work on that week, it is impossible to do them all. And if she was hearing two or three therapies that week, that’s a lot for her to put on, a burden of, “Oh, I need to do every single one of them because next week they’re going to come back and ask me if I did that.” And I’ll say, “No I didn’t. It’s okay. But I did do the stretches sometimes when he was changing his diaper and sometimes I sang the song but I didn’t do them all. And that’s okay.” And that kind of coordination of care between the therapist is important. And then also too the grandparents or whoever is watching Lucas.

Linda: Well the speech and the hearing therapists had so many similar things that they were recommending and some of them become very natural and you do them without even realizing you’re doing them. But there were times when I felt like, “Oh, do I need a chart for that now? Cause am I remembering, you know, to do all those things?” But I think it has just become second nature and he’s older so you get the response. Whereas so many of those things that you’re doing though they explain to us why you were doing them. You weren’t getting as much of a response. So it wasn’t something that was like a game or anything like that. You really had to remember to work on it. But again, we enjoyed it. We like doing the therapy with him. I think the combination of the therapy and not breaking any equipment at the beginning was a little concerning. None of it’s difficult really. But the first time, and I did break a little something on the implant a month or so ago. The one we’re not using, so hopefully that’s going to get fixed. But just remembering to change the batteries, recognizing, Oh the battery died, you know, not dropping a battery. We put the, the batteries are black and we had it on the brown table and Charlotte went by right away. “That needs to be in the case. Don’t leave it on the table.” Which she’s right. You need to be careful with them. But that was another thing just to learn. You know how to care for those. I think he had trouble keeping his hearing aids in. But you know, now it seems like he did just fine. I think that maybe you just kind of forget that struggle or maybe he, I just don’t think he had that much trouble with it and his implants, he’s so good with them now. I mean if he’s wearing that headband kind, he just puts it right back on himself. I mean he’s just, he’s done a really good job. But you do have to remember all of that and yet remember to take it off when he goes to sleep and you have to, when you go to the park, you got to remember to bring that battery pack thing because it will die while you’re there. And then you do have to go home and get it. Cause we know how important it is. We don’t want him to ever have a period of time when he can’t hear us. That’s not good for him, but that’s not as normal either.

Tatum: I have so many follow ups. First off, I really like what you said about your day-to-day, normal interactions are enough. I think as a therapist we need to remember that more. We’re trying to, like you said, not make monumental changes, right. Just little tweaks or not even tweaks are necessary sometimes, it’s just enough to be with your child.

Molly: I think that Nina has validated a lot of what we have done. She’ll recommend a strategy or something and I will hear my mom say, “Oh, I need to write that down.” I say, “no, mom you do that. Let me explain it to you in a different setting” When we do the “ready set go,” you know, and I said, “No, we do that whenever we’re getting ready in the car or going down a slide.” I said, “you’ve already do it in another setting. It’s just she’s sharing it with you in a very deliberate manner,” but it’s that recognizing in yourself that you’ve already done it. And it’s okay that you’ve only done it one time and now you’re just saying, “Oh wow, that’s a really good thing that I used to do and now I’m going to do it more.”

Linda: Well, and I think pausing that is such an important thing just to pause and they all tell us to do it, but that doesn’t take any extra effort. It’s just pause, let him respond, let him say what he wants to say. Don’t assume you know what he wants. Let him tell us and try not to let Charlotte talk for him. That’s always a goal.

Wendy: Sure. Was that something that you felt like you had to learn was the pausing and then waiting for a response?

Linda: Mhhmhhm.

Tatum: Yeah, I feel like that’s a hard one.

Wendy: It is.

Linda: And I would say for the therapists for them also to slow down whenever you are working with your child, you need to pause. But also if you’re going to switch from one activity to another, I think just that little bit of pause or giving the child a chance for the segue to the next activity, at least for Lucas. He’s not as happy if you just jump from one toy to one toy or one activity to one activity. If he’s, you know, running the show. Yes. You know, he might, but he doesn’t necessarily want all of us to dictate that.

Molly: He needs a transition from an activity.

Linda: That’s the word.

Molly: To another activity. And I know therapists come prepared with what they want to get accomplished and that’s great. I think they should be prepared. But it’s not “okay, this one’s done. Go to the next one.” He needs a transition. We need a transition. I think therapists need a transition time as well.

Tatum: Yeah, I think it helps make the session overall feel more relaxed. Some other follow ups I have is you talked a little bit about scheduling in the beginning. How do you two communicate together about scheduling? Do you have a set schedule? Is there advice you have for setting up therapy schedule for parents and grandparents? Or did you just wing it?

Molly: I think it is a great schedule and it works out perfectly but I don’t have to live my schedule all the time.

Linda: Well the therapists usually stay the same.

Tatum: Okay.

Linda: And we work around that. I would say there is a board on the door. My husband really likes to check that board and if there’s anything that’s not the same he’s going to verify that life is different today. But, you dictate the schedule. Right now because I’m not working. It’s really only Lucas and Charlotte and the other girls’ schedules. The first year I was still working so we also had to schedule in my conference calls and my things that I was doing. Charlotte knew if I was on the work phone she would say, “Are you on the work phone,” rather loud as opposed to, you know, “Grandma’s on the work phone.” Lucas never really needed to figure that out. But that was harder. It’s much easier this year as we can schedule in going to the library and going to the park and, and doing those fun things because now more therapies are either later in the day or the feeding therapist was on the weekends I think.

Molly: Yeah. And I think all the therapists that have contact with my mom have her phone number. So if there is a situation they know to contact her if they’re running late or if they want to change an appointment, they will still go through me. Sometimes you will be included on a text message just because they’re cutting out the middle man. And I think that that helps as well.

Linda: You know, everybody has days whenever they’re sick or their children are sick or we haven’t had to cancel a lot of appointments for Lucas, but we’ve done some as well. So it does help if it’s me that can directly contact them.

Wendy: How did you get your therapists to communicate with one another? Because you said that there’s four of them, which we have a lot, you know, there’s often multiple therapies and it is something we always, after we always think that our stuff is the most important and many times I’m sure it’s not. So how do you get everybody to coordinate?

Molly: I think everyone that works with Lucas has either worked with each other before or knows of them through other connections through other children. His physical therapist has had multiple children come to Child’s Voice. She did not know that going in and we did not pick her because of that. It’s just the way it happened. So I think in that regard they just have that understanding of each other and they have that coordination of care based on their own experiences. I don’t think I had to work with that at all.

Linda: No, I think we did a couple of co-therapies.

Molly: Yes. Everyone was co-treated.

Linda: Or hearing and speech together.

Molly: Hearing and speech has always gone together. I don’t think physical has ever gone.

Linda: She has such experience with children with a loss of hearing, she will use her own sign sometimes, but she references Ms. Nina. Well they’ve met each other at the, what do you call your conferences? At the six months, they’ve worked together at that.

Molly: Six months. Yeah. I don’t know how they all work together and know each other, but they all seem to just know everything about each other.

Linda: They do a good job.

Molly: And I mean, I think that we are very lucky in that regard that everyone is working together. And I do know that, Lucas’s hearing therapist and Nina who works for Child’s Voice, the speech therapist, I know they do talk with each other. I like to keep the little sheets that they fill out in their summary. Most people probably think it’s just because I haven’t put them away why they’re sitting on the table. But sometimes I give that to the next therapist and just say, “Here you go” and “this is what they’ve been working on” so that they can read it themselves. Because there’s also lingo that you guys include in your notes that another therapist would know that I don’t always know. So I think that that’s helpful for me as well to just have the paper and just say, “Here, why don’t you read this as well?”

Tatum: Yeah. That would be helpful for me as a therapist. I’ve had families do that before. Yeah.

Linda: The physical therapist has found, Lucas is very verbal when she’s working with him. So she has suggested to Nina, you know what, “if it’s not going very well, go have him, you know, climb over these pillows for a little while or start reaching for those magnets up there because he does talk with her a lot.”

Molly: And he has probably said, he’s used most of his signs for the very first time or his words for the very first time with Ms. Joy during physical therapy.

Wendy: That’s really cool.

Molly: So yes, the first time he would sign “Up” or say “Up” or “Open,” the first time he signed “Open” was with her. So it is really kind of including everyone to know that he gets physical therapy, that he gets hearing, that he gets speech, and she knows what signs he is capable of doing and which words he can vocalize. So she expects that from him because she knows that he can do it with another therapist or with us.

Linda: He’s just an amazing little boy.

 

Wendy: Thanks for tuning in. We hope you enjoyed the episode. Stay tuned for more of this great conversation in Part 2 and for more great episodes following this one. Remember to send us your voice memos! Stay safe and healthy.

 

CV Students: BYE, THANKS FOR LISTENING!