On Episode 23 Part 2, we share part two of our 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. In part two, Molly and Linda share more about their experience with Lucas’s early intervention therapies, Lucas’s multiple cochlear implant surgeries, and their relationship as mother and daughter.

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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. This is Wendy Deters again, the co-host of our show. We hope everyone is staying safe and healthy. Tatum and I are healthy and so are our families so we are very grateful for that. The staff at Child’s Voice continue to do their amazing work via zoom lessons and therapies throughout the summer. Today we have part two of our conversation with Molly and Linda about their family journal. As always we would love to hear from you, so please send us a voice memo or email at podcast@childsvoice.org. We hope all of you and our loved ones continue to be safe and healthy. Enjoy the show.

Tatum:                I have another follow-up question about therapy. You mentioned earlier your sense of control and losing that. It made me think of something else that I’ve often wondered about the families we see. How does it feel to have someone coming into your home four times a week?

Molly:                 Well I used to clean religiously. That has gone out the window cause they all know me now. I think with Early Intervention, it is not Lucas that needs to be a participant in every therapy session. It is family goals for a reason and it is an Individualized Family Service…I-F…

Tatum:                …Service Plan.

Molly:                 Service Plan for a reason. It is the family. I’m pretty sure that every therapist has seen a teenage daughter of mine being sullen on the couch or sleeping on the couch, right as they’re trying to work or someone coming in and eating a snack right next to Lucas sitting on the floor. So he then gets up from therapy and goes and sits on their lap to eat a snack. But those teenage girls then will correct me on a sign or a strategy or tell their father what he needs to be doing. So they may not be paying attention, but they are…

Linda:                  They’re listening without you knowing it.

Molly:                 They’re listening and they’re absorbing it all. So having so many people come in to my house is no big deal. But we have a big family and neighbors come over during therapy session and are there to drop off gifts and then they just become part of it as well. So, I think every family is different, but I do think that you need to include the family and there is a time and a place for everyone to take a more important role in the therapy sessions or to take a step back. And at the beginning it was a lot of talking to parents and that’s okay. And sometimes I walk away and I say, “Well, Lucas did nothing. All I did was sit and have a chat.” But in that situation for that day, that’s okay because I learned something. I was able to talk to them. I was able to confide or process something that I hadn’t been able to do with my friends or my family. And so I think that that’s part of it as well.

Linda:                  And I think it helps for us to start out with Ms. Nina’s specifically when it is just her and him. She gets that one-on-one time and then he may go off and have a snack with the girls when they come home from school. But then it’s just Molly and Nina who tend to do most of their talking. I get to see him be a rock star and say his 25 words. You both get that chance to talk about things that you don’t talk to me about. And Nina is so good about recognizing the frustrations and you know, kind of the concerns and lets you talk about those with her. And she kind of again validates that those are real feelings, whereas the two of us usually don’t have time either. There’s too much going on. So I think Nina has figured out a good way to work with our schedule and when she has her time just with him. And I mean he still participates when you come home, but he also would like to sit on mommy’s lap.

Wendy:               It sounds like she just reads the room,

Molly:                 Reads the room,

Wendy:               Reads the situation.

Molly:                 Yeah.

Wendy:               Which I know she does cause she’s amazing. But that’s a good skill for a therapist to have.

Molly:                 Right. And I think Joy is very similar in that manner, physical therapist, in that we can have a whole conversation and Lucas isn’t paying attention at all, but she keeps throwing a pillow down so he has to crawl over it as he’s going away from us, you know, all of a sudden just something flies through the air and he’s got to work around it. It’s incorporating those things in such a natural way that comes with time. We’ve had Nina and Joy for a long time. We’ve had Kayla now since the summer and Nancy is the Deaf Mentor and I think that if any families have not reached out to their service coordinators to see if a Deaf Mentor is available, it’s such an important person to have as well.

Linda:                  And I also think all of them have given us the reason why they do what they do, you know. And I have no idea anything about child development in my professional life because I raised some children, but I didn’t really understand everything that went into them being able to reach that next milestone where she’ll explain that to us and why she’s doing what she’s doing. Last week, she described what we had done a year ago and why now he’s so successful in something, you know, which is helpful for me. Plus, I’m just interested, I mean this is fascinating to me. To see him progress and to understand communication. That it didn’t just happen. There’s a whole process there that if I could do my life over, maybe I’d like to be a speech pathologist.

Wendy:               It is really interesting and it’s so exciting to see them grow and you know, especially in this time, there’s so much growth that happens in the first three years. It’s really incredible.

Tatum:                So my last follow-up question just on the therapy part of things is both of you kind of mentioned getting too many strategies at once, too much stuff to carryover at once. How can therapists make that better? Like what should we be doing?

Molly:                 That is a really tough question.

Wendy:               I love the question.

Molly:                 I think that most therapists need to slow down in working with a child who is very young. When Lucas started, some of his sessions were literally just him sitting and holding him and so slowing down for the child but then also slowing down for the parent as well. I understand a lot of the lingo that therapists use just because my profession is in special ed and so I understand kind of more child development, but I think other parents do not. So slowing down in what you explain to the parents is not dumbing it down. It just needs to be more step-by-step. I would say that, and I do think you kind of said talking to each other, having a, I don’t know if many kids have a hearing therapist and a speech pathologist like Lucas does. But I think talking to each other, I always say one therapist might introduce a skill and the other one practices it because maybe he does better with one therapist than the other. And so one therapist is moving on to teach new skills where the other therapist is taking a more slow approach and still trying to master a skill that he’s moved on from with the other one but he never really mastered it. So it’s that teach, practice, teach, practice kind of model.

Linda:                  My only suggestion is like for anything, you just need to know your child. And at the very beginning, Lucas was not mobile, he liked to take his time with everything. And we did have a therapist who we just jumped from one thing to the next thing to another toy. Great for Charlotte, you know, not necessarily good for a baby, but if the therapies kind of somehow link together, I think that’s helpful. Like Nina will show me a chart of different strategies and she’ll say, “let’s just work on these two.” Because I’d said, “if there’s something I’m going to do during the week, you know, what would you suggest?” So they’re very much related to each other or this last week it was her bag of all things that start with the letter T and he said turkey and tomato. It was amazing to me, but to me that was very, you know, we just kind of said did the same thing over and over and he definitely mastered it. Maybe another suggestion, this might be more for a grandparent or a parent who’s not already in this field is demonstrating back. So I mean I love to watch them and how they interact, but then I’m like, “Now how did she do that when she said, “You want the pig or the cow” when you know, how did she say that?” And Nina last week said, “Will I put you on the spot if you just play with him and I watch you?” No, cause now I remember, you know what she suggested and not everybody might feel comfortable with that, but it was helpful for me. I did appreciate it and I have stopped videoing things for Molly, but I really did like to have them cause now I go back and I look at what he did last year and when he can do this year.

Wendy:               So you guys videotaped the sessions?

Linda:                  Cause it was something really cute or I did, I was like, I’m never gonna remember this. Then I found out that they were communicating back forth. Ms. Joy, I think within a half hour of her leaving the house, Molly knows exactly what they did. But yeah.

Molly:                 Yeah. She sends her notes electronically to me, so I get them when I’m at work.

Linda:                  She might be doing it right as she’s…

Molly:                 Yeah, she writes it and sends it from my house, so I get them even when I’m not there. And that is nice to have because we can go back and reference it. But yes, my mom would videotape things, especially with stretches and things like that for Lucas with physical therapy. And then also with Nina to show wait time or to show what Lucas did or didn’t do. I did like getting the videos, but they were not always received very well from me. I would say. I didn’t want to comment back about them. I wanted my own time to view them and process it at the beginning. I think that goes through the whole process and accepting time period. And I think during the rougher times in my own personal journey, coming home and hearing about therapy was not always the easiest for me to hear. I wanted to know, did he eat, did he nap? How was my night going to go? And eventually I might ask a question about the therapy, but I might not be in a state of mind when I can accept that information. And it took me a long time to realize that I also needed to do that with Matt. So when he comes home and he walks in the door, I don’t need to explain to him all the things that we just learned about and now I need to do this, and we’re going to have more wait time because he needs that time to process and get home as well. And I may forget to tell him something from that week’s session, but that’s okay because he’s still remembering something from two weeks ago that I’ve moved on from. So I think with any family, husbands, wives, grandparents, you need to allow them time before you give all of the information from a session because it is a lot of information that you get. And I do think therapy’s going to get harder or not harder. More interesting now that he is more verbal and has shown a lot more progress because now our expectations are there as well. Before, him sitting and participating in a session just by observing was good enough. It’s not that way anymore. So now that his involvement has increased, I think everything else will increase as well.

Linda:                  He works hard and he’ll have to work harder at this. But again, he’s just so cute.

Wendy:               Yeah, they do work really hard. Yeah, they really do.

Tatum:                The way a therapy session looks changes a lot I think from baby to almost three. Yeah.

Molly:                 Yes, for sure. Completely different.

Tatum:                Totally different.

Tatum:                So Wendy, I know you have a new direction to go in.

Wendy:               We’ve talked a lot about therapy and it’s been so helpful to hear both of you sort of give suggestions of how therapists can modify their approaches to meet the needs of families cause a lot of these things happen and we don’t realize it. Cause again, we have our plan. We think that what we need to get done on this day is the most important thing and you know, we really have to take that step back and sometimes we need help doing that. So thank you for sharing those things with us. I wanted to ask outside of therapy are there any other activities or things that Linda you’ve done to learn more about Lucas’s hearing loss in his journey?

Linda:                  Molly’s done a really good job of including me in different bits and pieces along the way. I was there for one of the screening, hearing tests and that obviously was, that was a tough one. But then after that I went to, I had the visit with the hearing mentor, which was nice because she said, “As a grandparent, what are your questions?” And she showed us her hearing aid and her cochlear implant. And I asked a couple of silly questions and she said, “Linda, he is gonna hear some things. It’s okay. He’s going to be alright.” But we went to, where else did we, where else did you take me to get to do, oh the sound booth?

Molly:                 I wanted my mom to be able to know what to expect inside of a sound booth and what he goes through during that time and what a parent goes through. So I wanted her to see what it is like so that she understood a little bit more what happens when I go to those appointments with Lucas because it is a different situation that most people would have no reason or knowledge or need to know until you’re in that situation. And if there ever is a time when Matt or I aren’t able to take Lucas, I wanted someone to be able to know how to do it. And I think that’s very important for our family.

Linda:                  No, I agree. And it was important that, you know, everyone sees those videos about a child is activated and oh my goodness, they can hear everything and they’re smiling and laughing and how that’s often not true and how important that was and not to be disappointed when it isn’t like that. And we did get to go see the audiologist when he had his hearing aids because he needed the molds created, you know, so often, or formed so often because of him growing. That was fascinating the way they made that little ear mold. And I found that was really interesting. And then she surprised me with a field trip to Child’s Voice. So I got to see, you know, the classrooms and talk with some of the children. And that was fun. It was very much a good experience. It helped me see other little ones with their cochlear implants. I remember one of the, I was holding Lucas and he only had one at the time and this little girl said, “Well, he only has one.” And I think the teacher said, “But he’s going to get a second one.” And she said, “Well, I only have two.” And the teacher said, “You only have two ears, honey. That’s all you’ll ever have.”

Wendy:               Aw that’s cute.

Linda:                  That was cute. And we’re taking sign language so that we know, you know, some basic signs, it’s way over our head of anything that we really want or use. But Ava and my husband and I and Matt are taking the class together, which has just been kind of fun that, you know, we’re helping each other and we take our quizzes together and we get competitive. Matt’s done the best I think and then I went to the hospital, to Lurie with you once and just saw the hospital and didn’t see one of the physicians but just what it was like and how the volunteers played with the kids. And that was fun. But it was just nice to see their world, you know, a little bit from Lucas’s perspective cause that’s the way it’s always going to be.

Tatum:                I have a follow-up that I think will lead into our next question anyways. For the initial surgeries, were you there Linda? Did you guys go together? How did that go?

Molly:                 No. I don’t like visitors in hospitals. I didn’t even really like people coming to the hospital after my children were born. I didn’t want anyone there for that. My mom did have to ask, “Will you tell me how the surgery goes?” And I did. I communicated very well on that day. But I think that parents need the opportunity and the space to feel and react without having a show. Matt and I know how to balance each other out and also when it is time to give that person space to react and having someone else there, you are then taking on their emotions and their feelings. And also the surgery to me was not a big stepping stone. I was not excited for the surgery. I did not think that the surgery was this big momentous occasion. It was surgery. I’m going to go in for the surgery, he’s going to be gone for a while and come back to me with something new. But that day was just about the surgery and that time period. I don’t think that I needed it to be celebrated or I don’t know the right word for it, but I didn’t need it to be made a big deal of.

Tatum:                Yeah. I’m just so impressed by your ability to set boundaries and then I feel like you respect boundaries so well, Linda.

Molly:                 She really does. She knows when I do allow her to be in my emotions and in my feelings, she will come in willingly and then she knows how to give that space as well.

Linda:                  You learn.

Tatum:                That’s amazing.

Linda:                  You learn those skills.

Molly:                 Right.

Linda:                  And every child is different. And that’s a great skill for her to have to know that and to be able to work through all the things that happen in a family.

Wendy:               And as a parent, that must be such a hard skill to learn. I mean my kids are little so I do not know that skill. We are in each other’s business all the time and I can see as they grow older, starting to give them space is going to be a challenge.

Linda:                  I’ve had some time to get a comfort level.

Wendy:               Sure. And I’m sure that, you know, certain years are easier than others. But I guess like anything it’s a learned skill.

Linda:                  Yeah, I think so. I mean, Molly’s very successful and she’s very happy and she has a wonderful family and that’s what is important for her to be able to navigate the crazy.

Wendy:               Tatum mentioned about being there at the first surgery. I do happen to know that there have been multiple surgeries. So can you speak a little bit to the unique sort of journey that you’ve been on?

Molly:                 Yes. So Lucas was under a year when he had his first surgery; therefore, only one ear was implanted.

Wendy:               Due to insurance coverage?

Molly:                 Insurance, yes. And it was the right side and it was a great surgery. It went well. I felt all the emotions while he was gone. He came back, he healed perfectly. We went to that post-op and the surgeon said, “Oh, it moved in his head.” So the internal device just rotated and shifted, not a significant amount, not in a manner that affected the functionality at all. And he was activated and we went about our business. But it was not in the right place from what the surgeon initially had planned for. And it does impact the device in that it’s just not very easy to wear because the behind-the-ear processor and the magnet touch because they are so close together. At his second surgery for the left side, our initial hope was that the right side would be fixed or put back in the correct location. But after discussions they said that at that time, no, we wanted to keep one ear to be able to hear and to not do both at the same time. So he had his left surgery and I don’t remember that surgery at all. It was perfectly, it was easy peasy. I have no memory at all of it. And that was when he was a year old and now this past January, so when he was about 20 months, I would say, we made the decision to do a revision on the right side to put it back to match where the left side is and where the initial placement was supposed to be. That surgery was a traumatic experience for me. I think Lucas being older. My own intention going in was this was going to be quick and easy and I will be home by lunchtime. That was not the case. Not because of the surgeon or not because of Lucas, but because you needed to be careful and revisions take time and it’s not something that surgeons want to do. They don’t want to do a revision. No one wants to reopen up a child. And so, the surgeon was very careful and cautious and respectful of the implant so that it didn’t need to be explanted. So he did not have an explant. He just had a revision. Everything stayed internal, electrodes were not even touched. And Lucas is still healing from that surgery. It has been a process. And on good days I say that he will be completely healed and everything will go back to normal. I do have concerns that Lucas is more aware. He has made so much gain that I don’t want him to lose any of his progress as he is not worn his right device now since January 21st and it is now March 2nd. But in that time his language has progressed, his vocalizations have progressed. If he hadn’t been showing so much progress, I think I’d be more upset at his complications. But at this time everyone is very hopeful that everything will go back to normal. Just another part of Lucas being that 1% of this ever happening to a family. He had to take that marker.

Wendy:               Well, thank you for sharing that with us, I know it’s been a long journey and a scary one.

Molly:                 Right, right.

Wendy:               Like you were saying before about making the decision just to do the cochlear implant, you’re making that decision for your child and it’s a big responsibility. So any outcome you feel personally responsible for and it’s hard to, to weigh all of those things. But it sounds like he will get there.

Linda:                  He will.

Wendy:               He will get there.

Linda:                  And he’s so young.

Molly:                 So I do think that waiting on the revision to hit for him to have been older would have been even more complicated. Missing out on anything else when he was school age or an adult, I think would’ve been more difficult for him.

Wendy:               Well we’ll think positive thoughts for him. I think just to sort of wrap up, we’ve talked so much today about a number of different topics that are really interesting. I think one of the biggest wonders that I have just about your relationship as a mom and a daughter and grandparent. And how has this whole journey changed your relationship?

Linda:                  I think I will start. Maybe going a little different direction in my response initially is that usually your daughter is your daughter. She’s either the baby of the family or in Molly’s case, the youngest cousin. So you think of them as that. But during this experience with Lucas is now I know Molly as an educator, I know, you know, the information that she has, the vocabulary she uses when she’s talking about child development and the different processes that Lucas is going through. It’s not my vocabulary. I know medical things. I don’t know any of that. So I’ve been able to see that side of Molly that I’ve never been in a school with her. So I’ve learned to know her more as that professional. Always knew she was very independent and she was strong. I think the tenacity she showed that first summer to get everything done was remarkable. That whole concept of the mama bear, that’s what came out and she did everything she could for Lucas to take care of him. And I think she and Matt together have taught us that you need to be positive even whenever this is a struggle. That I think I might’ve perseverated on some of this for a while. And though she was internally, from the outside we had to keep going. We had to do what we needed to do and that taught me something that probably she knew I or my mom, we would have struggled. We would not have been able to move on and do all the things that we needed to do. So I think it’s a new respect for Molly and understanding her as her as an individual and not just my daughter.

Molly:                 I think that my mom has always allowed me to be the person that I want to be and has really taken on the role of backseat when it comes to parenting in that even though she is there and she lives it multiple days a week, she defers to me and she defers to Matt and she allows us to still be the parents and make our decisions and support our decisions. Has it changed our relationship? I wouldn’t say hearing loss has changed our relationship. I would say being more involved in my life has changed our relationship. So whether Lucas had needed cochlear implants or not, she would still be at my house. She would still be part of my children’s life. And therefore, this is just one part of it. I mean sometimes I am in control of my mother. I’m in control of her schedule. I have to tell her what she can and can’t do. And that is a very unique feeling because she’s your mom. But when she comes to my house, I lay out and say, “This is what you do today.” And that is a hard thing for a child to do to their parent. But then also I feel comfortable that I can respect and know that she will do it. And if she has a question, yes I get annoyed, but she will ask it. And that isn’t her always trying to defy me. It is her trying to support what I want and to support what Matt wants as well.

Linda:                  And to make sure we follow through with what your intention was.

Molly:                 Yeah.

Linda:                  It’s a totally different dynamic than when I was raising two daughters. You know, there’s five, there’s a wider range of ages and then there’s all of the things that Lucas needs. So we want to do what Molly and Matt want us to do. I have sent them a text and said, “I just did this. Was that okay? Is it all right or can I do this?” And again, it’s their children and we want to make sure, especially when we’re in that role of spending time in their house and the schedule. If they were all at our house. So where it was a grandparent thing where we’re just going up to park and having fun then, I mean, we know what to do about that, but there’s other times when I really do want their influence on how we move forward on, on things.

Wendy:               Before we wrap everything up, we like to ask our guests for just one piece of advice if they have it for our listeners. So do either of you have something you’d like to like to share as a last bit of advice.

Linda:                  I would share with other grandparents that you want to celebrate your baby, hearing or not hearing, but to support your children in the decisions they make and that it is their child. And you want to support them and you want to follow their lead. And that’s how we have done with Lucas’s journey. I have kept a text that Matt sent to our family when Lucas was about, about four weeks old and probably nobody else kept it. But this is what he said. “Lucas will be loved and cared for and fine. He will do and experience many great and wonderful things. He will live an amazing life.” And that’s how they’re leading their life. That’s all I can say. I’ve kept it together. I got all the way through it. When I practiced with dad, I didn’t make it.

Wendy:               That’s really beautiful.

Linda:                  That’s what he wrote.

Molly:                 And that is what Matt truly believes.

Linda:                  It’s not going to be all peaches and cream. There’s gonna be bumps in the road, but that’s how both of you have always approached it. And that’s the best way. And I know not all families can do that. I don’t want somebody to listen to this that has really struggled or that day of surgery when people post on Facebook, you know how awful it is. That’s their normal. But that’s not our normal. And hopefully somebody would, you know, be listening to this and take it as, you know, there’s both hard things, but there’s things to celebrate too. And you guys have done that

Molly:                 I do think that it’s not a failed hearing test. I don’t want that to be the memory of any of that. I don’t run to surgery to be the memory. It’s Lucas and he’s changed our lives and he’s just going through a stage of life and he will continue to, and, we’re just along for the journey really.

Linda:                  Well, and somebody said is he, you know, more special or anything. He’s special cause he’s the only boy. He was going to be special no matter what, hearing or not hearing. He’s the only boy. So also you may have hearing loss but he’s also just a little boy and he’s almost two when he can stomp his foot in front of that refrigerator and demand something like every other kid.

Wendy:               Well it sounds like Molly, you and Matt have, well like your mom has sort of passed down honoring their child’s independence…

Molly:                 Right.

Wendy:               And you’re doing that for Lucas and that’s pretty incredible.

Molly:                 Hopefully.

Wendy:               Well thank you. I think that’s a good place to, to wrap things up. Molly and Linda, thank you so much for joining us. This was a wonderful conversation.

Molly:                 Well, thank you for having us.

Tatum:                Yes, thank you both for being so open and letting us ask our probing questions and for being so prepared. For our listeners, Linda wrote that text on a note card that she brought with her that she just read off of. This has been wonderful to hear about your lives.

Linda:                  It’s kind of been a privilege, you know, grandparents don’t get asked that many questions, so it was fun.

Wendy:               Great. Well thank you.

Wendy:               Thank you for joining us for another episode of All Ears at Child’s Voice.

Tatum:                As always we release episodes once a month on the second Wednesday of the month. So look out for our next episode next month.

Wendy:               If you’d like to reach out to us, you can find us on Twitter and Instagram. I’m @wendydetersSLP and you can find Tatum @tatumfritzSLP.

Tatum:                You can also email us at podcast@childsvoice.org and you can find episode show notes and episode transcripts at our Child’s Voice website, childsvoice.org And if you’d like to hear your voice on the show, you can send in a voice memo using your phone’s voice memo app. You would just email that memo to podcast@childsvoice.org and if you need help figuring out how to do that information on that is in our show notes.

Wendy:               And if you’re interested in learning more about Child’s Voice, we are on Facebook as well as Twitter and Instagram with the handle @childs_voice. No apostrophe.

Tatum:                We’ll see you next time. Bye.

Wendy:               Bye.

Wendy:               Thank you again for tuning in. We hope you enjoyed this episode and this two-part series. We have some really great conversations lined up for this summer so please stay tuned.

CV Students:      BYE, THANKS FOR LISTENING.