Our third Child’s Voice Podcast was released on September 26, 2018. To listen to the podcast, please Click Here.
On today’s episode of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Jessica interviewed Colleen Powell. Colleen is a parent of a child who wears bilateral cochlear implants. She is also a member of the Hear Peer Support Team at Med-EL and spends time counseling parents and adults that are considering pursuing a cochlear implant for their child or themselves.
Topics discussed on today’s show include…
- Colleen’s perspective, as a parent, on responding to your audiologist’s recommendation that her child could benefit from a cochlear implant.
- The role of professionals in counseling families through the cochlear implantation process. In particular, how can professionals help parents with deciding on a cochlear implant brand while remaining unbiased?
- We discuss the questions Colleen feels are most important for parents and adults considering a cochlear implant to ask when it comes to deciding on a brand. Colleen shares why it is important to emphasize the internal parts of the cochlear implant over the external parts of the device. You can reach out to Colleen (email below) for her complete list of questions.
- What to do when it is time to consider a second cochlear implant. We’ll hear all about the ways in which Colleen’s school-age son advocated for his own needs.
*At the end of the episode, Colleen plugs her own podcast, A Year of Listening. Contrary to the sound of its name, A Year of Listening focuses, not on hearing loss, but on discussing controversial issues of the day (or as Colleen puts it, “Topics your mother warned you never to discuss at cocktail parties”). Be sure to check it out.
If you have questions or comments to share with Colleen, she is on Instagram and twitter @colleenkpowell and you can also find her through her website colleenkpowell.com. Her podcast, A Year of Listening, is on twitter and Instagram with the handle @yearoflistening.
Tatum (T): Welcome to Episode 3 of 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. We’re your hosts, I’m Tatum Fritz.
Jessica (J): And I’m Jessica Brock.
T: And this is the second episode in a two-part series about the cochlear implant process. Last week we spoke with two audiologists’ and got the professional perspective on the process and this week we have parent Colleen Powell on the show with us. Welcome Colleen!
Colleen (C): Hi!
J: Colleen is the mother of a child who uses bilateral cochlear implants. She also works as a member of the Hear Peer Support Team at Med-El, a cochlear implant company. Later on in our conversation, we’ll talk about your experience as a parent of a child with hearing loss but would you like to share a little bit now about your role at Med-EL?
C: Sure! So I’m part of the Hear Peers Team and it’s comprised of adults who are Med-El users and parents of kids. Basically we are available to help other people on their journey so if you are in a place where you are wanting to learn about cochlear implants or wanting to learn more about Med-El specifically, I talk with parents all the time. And then after you’ve been implanted I’m also available to help with – you’ll find this out if you get a cochlear implant but you’re given a ton of equipment and not all of it necessary right away and so I can help go through things or just changing batteries, all sorts of things that come up I’m available to help parents and other adult users.
J: That’s awesome. Do you ever help professionals with any of that or are you mostly talking with parents?
C: So a little bit. I was at the AG Bell convention a couple weeks ago now at this point and that was really great because I got to meet with a lot of professionals and it’s always good I think for anybody to just get a parent perspective; so that’s the biggest part of my job is sharing our experience; what I’ve learned and what it was like for us.
T: I know you’ve also spoken with our staff a bit about how we can help the families we serve.
C: Yeah and that’s one thing I think, I don’t know as a parent I necessarily leaned into the professionals in my life as much but I’m not sure how they would’ve felt if I had so I do feel like you guys are in a really neat position. You know the parents and you know the kids really well and they feel comfortable with you and so when there’s overwhelming questions to ask you guys are really great people that parents trust so…
J: Thank you!
T: It is really helpful to have a parent perspective. So before we get into the main discussion, Colleen would you like to share a favorite story from the past week or from the summer?
C: Well I’ve got four kids, Liam is my oldest, he’s my one with cochlear implants and then he has three little sisters. My youngest is 2 ½ and she is a little bit of a character being the youngest of four. So this past week we stopped at Walgreens and got some water guns before we were going to the pool and we walk to our pool so we walked to Walgreens and we walked to the pool and at one point we were crossing kind of a busy street and I turn around to make sure she’s with everybody and she is like she’s got her gun in her hand and she’s kinda sauntering like she’s an old cowboy in the Wild West and she’s just going, “I’m gonna shoot you, you maniac!” and at that moment I just knew somebody thinks that I am a terrible parent because my two year old is just threatening the lives of the people on Main Street. So that’s my story from the week (laughs).
J: Were there a lot of people around?
C: Well there were a lot of cars parked watching us cross the street, yes.
J: That’s really cute. Alright, as Tatum mentioned we will be talking with Colleen about her own experience as a parent in the cochlear implant process. We will also be talking with her some about her experience guiding other parents through the process. So, to get started, do you want to tell us a little bit about your son, how old he is what he likes to do, all that good stuff?
C: Liam is 8 years old, he will be going into 3rd grade in the fall and he’s really a typical 8 year old kid. He loves reading, he just yesterday finished the fourth Harry Potter book which is very exciting. He started the 5th one, and I’m a big Harry Potter fan so we’ve had lots of conversations about that world. He loves, like I said, he loves reading, he’s into some sports, he wants to try pottery this fall, he’s one of those kids that’s like “Oh I’ll try that, I’ll try that”
J: A renaissance man!
C: Exactly, exactly. And he got his first cochlear implant when he was 3 and his second when he was 7. So we’re actually just coning up on the year mark, it was August of last year. And he’s doing really well. It was really interesting the second time around because he could articulate so much more about what that was like and what it sounded like to him and all of that. So it was really fascinating the last year to walk through that process with him.
J: I’m kind of curious what he has said about—
C: What was interesting was activation day, that’s one of the things I think parents or anybody who doesn’t have a cochlear implant is always like, “What does it sound like?” and he was really interesting because he was hearing things right away and he said, “It kinda sounds like a cross between an alien and a robot in my head,” and then what was interesting and what I think is so fascinating about the brain is he, you know, we were talking to him and he would say, “I understand what I’m saying but I don’t understand what you’re saying,” and his brain knew what he was trying to say so hearing that, the brain is making connections, and I thought that was fascinating to think about. To think, I’m saying something and then I get back this garble-y noise and how interesting that must be for him. And then it was neat, the process was neat because his younger siblings would sometimes join us when we would do rehab work and we would play weird games you know all the kinds of things that professionals are doing with kids, I tried to do as much as I knew with him and my daughter, she was five at the time, would help. And she hadn’t done it with us for a couple of days or maybe even a week and when she came back, she was like, “Wow, Liam! You’re getting really better!” like she could see, it was interesting, it was a very marked process of seeing like he didn’t understand anything we were saying at first and then just slowly but surely he started to pick up sounds and then language and putting the words together and it’s really fascinating, all of it.
J: I feel like just that could be an entire episode.
T: Yeah the rehab process, I want to ask more questions but I feel like we’ll get a little bit off track.
C: Totally fine, I can come back for another time.
J: We would love that.
T: Yeah, I have so many questions but we’ll go on (laughs). So we know that learning about cochlear implants can be an overwhelming process. Walk us through what it was like with your family when you were first learning about Liam’s hearing loss and then it sounds like he got his cochlear implant a little later so also about that process.
C: So Liam was a little bit late to all of it, to the diagnosis. He was a year old when he was diagnosed. We think now that they misadministered the hearing test as a newborn for his newborn screening. If you administer it enough times you can get kind of a false pass and we’re fairly certain that’s what happened because looking back there were a lot of things in that first year where I was like ,something’s off and we didn’t know what it was. And he was our firstborn so I had no other markers to compare it to. He was diagnosed at the moderately severe to severe level which I remember early on reading kind of all about that when we first learned about it and thinking, “I really wish he was either more deaf or less deaf,” because this is a level where it’s really hard to treat with just hearing aids but he doesn’t quite qualify for cochlear implants yet. It’s just funny because I remember thinking that and then very quickly we got used to the hearing aids, he was doing pretty well, he was here at Child’s Voice for their early intervention program, which was phenomenal. And he was starting to gain language and words and then he did that for about two years, he had hearing aids, and right before his third birthday we went in for a routine hearing test, booth test, and the audiologist said, “You know, he’s lost more hearing especially in that left ear and now we’re at the profound level and we’re looking at a cochlear implant.” And she said it really matter-of-factly and it shouldn’t have been altering news but I just remember, it was devastating. And I don’t remember why, now I can kinda remember, but we had gotten so used to hearing aids and it felt like all of a sudden now I have to get—it was almost like being diagnosed again in a weird way.
So it is really overwhelming and you would think having been walking through the hearing loss community and all of it that I would have known a little bit more, felt a little bit more comfortable, but I wasn’t. You know he had lots of friends who had cochlear implants, and I know lots of parents whose kids were implanted and yet it still felt like this really foreign device for my kid.
J: You’re spending so much of your time and energy on just each step of the way and not really thinking about this other…
C: Yep, and we just got really used to hearing aids. I knew how they worked, I knew how to do the batteries. I knew how to tell that they were working by sticking them in my ear, you know there were all these little dumb things, like I would adjust to the next thing but in the moment it felt like I had to learn a whole new system.
T: Had your audiologist ever mentioned before about the possibility of a cochlear implant or potential to progress?
C: No, because he was diagnosed so late, at that point, we didn’t know what he started out with. It wasn’t a progressive thing where it was over time it was slowly progressing. It was kinda like between one appointment to the next six months and we don’t know why and we weren’t really sure what that was about. That was a hard place to because we were kind of in this weird position where we had to decide if we were going to do cochlear implants. It wasn’t clear cut. He was in a range where it probably could’ve been approved by insurance and he would’ve benefitted from it. But he was also doing fairly well with hearing aids. That almost made it hard to because you’re making this really lifelong decision and you’re not really sure—you can’t see the future, you don’t really know exactly if that’s the right one or not.
J: I’ve heard that before from parents who say that they wish it was either profound-profound because then there wouldn’t even be a decision or really in that mild range hearing aids are kind of that clear cut answer.
C: When you’re at that severe-profound range it gets harder. You feel like you have to make the decision, it isn’t made for you very easily.
T: Especially with a sudden drop because he’s already doing well so it’s almost like cognitive dissonance like you see that he’s able to listen but then…
C: That was where we really had to come down to making the decision was we were realizing as he did a lot of speech recognition tasks where he was repeating words that the hearing aids had been turned up so much that it was distorting the speech and distorting the language. So for him at 2.5-3 years old is such a critical language development time so for us the decision became pretty clear at this time—he needs these now, he needs good access now.
J: What questions did you have when you first heard from your audiologist about cochlear implants and a cochlear implant for Liam?
C: I had no questions because I didn’t know. That was probably—when I talk to parents now, I really talk to them about here are some questions you can ask, because when I was there, I didn’t even know. I didn’t know how cochlear implants worked, I didn’t know—and they tell you these things but you’re also kind of dealing, especially if it’s a new diagnosis, parents who are diagnosed at birth or whatever, you’re just wrapping your head around the fact that your kid has hearing loss, so much less trying to take in this how a cochlear implant works, and this is what it’s gonna be like in your kid’s head, and… you know, it’s really, I didn’t have good questions. I think I thought of cochlear implants a lot like hearing aids because I had gotten used to hearing aids. So I was thinking about the external component of all of it. And now I talk to families and I say, the external is the last priority. Think about what is going into your kid’s head, know about that, ask questions about that, because that’s the thing that’s in there forever.
T: So before kids go through the cochlear implant surgery, parents have to make this big decision of what brand to go with with the cochlear implant. And I know Jessica and I sometimes get questions from – sometimes we do, sometimes our families will ask us questions about brand and sometimes they’ll never ask us. And I know when the question comes up, I almost never know what to say. What kinds of things did you ask during that time ,what kinds of things influenced your own decision.
C: So that is so… overwhelming because… and I really, having now been through it, and knowing some patients whose audiologists really pushed certain brands over the others, I’m thankful that our audiologist does it this way. But it is unhe lpful in that it is—you know they want to remain unbiased so they give literature for all three brands and they say, figure out what you want and let us know. And everyone does this to them, but I would say, “okay but what would you choose?” and they’re like, “they’re fine, they’re all good, you know.” And I do appreciate that but they were my person that I knew to ask questions to and I felt like they were being very unhelpful in the moment. So the hard part is, and the thing that I did at the time, I approached it like hearing aids. So I was paying attention to the external processor and I was looking at those features and that’s not unimportant. But what I’ve learned is that that is constantly changing and in the five years that my son has had implants, every company has come out with new processors almost every year. They always, if one company has something that’s awesome within a year or two the other companies will have it. And so when we were going through the process, the single unit processor was new for Med-El and that was why we were interested in them. But advanced bionics had the waterproof one. And I remember this agonizing, of like, “what am I gonna do?” and within a year Med-El had waterproof stuff. So it doesn’t even matter with the external stuff. They really do keep up, but what does not change is what you’re putting in the kids’ head, the device they’re getting implanted with and the internal implant. And so I think I wish I’d known what questions to ask about that. What made those brands different with that regard, and I wish I’d even known to even think about that. And that’s something I think about for SLPs, especially EI SLPs for you to even help parents to re-prioritize how they think about the cochlear implant.
T: What kinds of things can a family find out about the internal device?
C: So I have created over the years a list of questions to ask. I’m gonna leave my email address at the end so people can always email me and I can email them to people if they are curious. But I think starting with the internal implant—what makes them unique? What can you know about the electrode array and the placements of the electrode along the different brands? This is something I didn’t really think about, the electrode goes all the way into the cochlea and the electrodes are placed where the ear most naturally hears those different pitches, and that’s something it sounds very science-y and tech-y but it makes a difference in the way Liam’s brain has to work to access the sound. He’s hearing it kind of in the most natural place. What are the size and length comparisons of the electrodes. These are great questions for the surgeon—how is the device inserted? Are there risks associated with the type of device or the insertion process? Are there any brands that are better for maintaining residual hearing? I think it’s also really important to ask your surgeon—if you have a brand that you like—talk to your surgeon about how have you done this brand frequently, are you comfortable with this brand, because each brand has different device insertion methods and a lot of the success of the implant can ride or die on the surgeon’s technique. So I think that’s always important to kind of know. And then the big one that a lot of people are talking about is MRIs. I didn’t know about MRI, I didn’t know that my kid couldn’t get an MRI with a cochlear implant. And there are brands that you CAN get MRIs with. Because the thing about MRIs is that it’s something will in the lifetime of a person they are likely to need one at some point. And to get one and not have to have the magnet removed, which is for my son Liam, that’s the case, he can get an MRI without having the magnet removed, means that he doesn’t have a down hearing time. So when they say, “You just take the magnet out, it’s very easy,” well it is, you just put it back in, but then there’s a month where your kid can’t use your implants. For Liam, who goes to school, who is completely auditory, like he doesn’t use sign or anything, that would be really ahrd for him. So those are all things that I didn’t even think to ask about. It may not be a priority for you. There may be—any of those things that were priorities for me don’t have to be, but at least you know what you’re signing up for.
J: I see how some of those things are super intimidating for parents because understanding how a cochlear implant works is hard. And then diving into the—like you said, the tech-y part of it all can be kind of scary. But it’s professionals’ jobs to explain that to parents, so parents should feel free to ask even if you’re not really sure what they’re asking.
C: Totally, and I think a good audiologist and a good surgeon can kind of go through that. And I mean, at the end of the day, any of the three devices are going to give your kid access to sound. That is 100% true and so I think we put really high stakes on this conversation and I think we’ve been really happy with our choice but I think more than making the “right choice,” I think it’s just important to ask enough questions that you feel really good about your choice. Because we literally—I didn’t ask any of these questions, I sort of was like, oh I like the Rondo, we found out some things about the company itself and their policies and warranties and all of that and I was like, “I think we’re gonna go with them,” and afterwards I remember for weeks thinking, did we make the wrong choice, oh my gosh, what did I do?!” and I was just going off of a couple of things and I wasn’t really sure and I remember hearing other people talk about stuff that I just didn’t even know to ask about. So I just think anything you can ask about is important. Ask about the companies themselves, what are their warranty policies, where are they located, where is the parts manufacturer, what is their customer service like, do they have great customer service, is there backwards compatibility, are all the new devices compatible with old internal implants so that your kid can always get whatever’s new. Those are all really good questions that I wouldn’t have known to ask about the different companies. And then, and THEN ask questions about the external processor. Ask about assistive listening devices, ask about the color options, ask about the size, all of that stuff. But what, like I said, that stuff changes all the time. You are available for upgrades about every five years and I think, too, I’ve talked to a lot of parents who have babies and they’re like, we just want the smallest one. And I’m like, you want the smallest one now but in a year it won’t matter anymore. And there’s a whole bunch of other things that are factors. So try to keep the right perspective about that external processor.
J: Another decision before surgery for cochlear implants for some families, this is very specific, for some families is one implant or two implants? One now and then another one later? Both at the same time? Just one long-term… tell us about kind of your experience with that because you said now Liam has two.
C: Now he has two, yeah. So at the time, he had lost more hearing in one ear. One ear was really clearly in the profound range and one ear was still in the severe range. And so, our audiologist recommended one and we felt really good about that. We didn’t—I don’t think I would’ve felt comfortable at the time to do both, partly because we were just adjusting. I felt like he was gonna get the best of both worlds. He’s gonna have some acoustic hearing and some cochlear implant technology hearing and that would be the best, you know that would be a good thing. What was interesting was that pretty quickly after his first implant, about a year, I would say, he himself was asking for a second implant. He would say, “I want two implants so I can hear better.” He recognized that he was getting better access to sound with his implant. Now that’s his level of hearing loss, he was in that severe range where it’s really hard. So then it became like, oh at first I was like, “This is what we do. We have one of each, we have the best of both worlds.” But listening to him I kind of had to adjust, like oh, maybe this is what he wants, this is better. And so we would bring it up and we would have our audiology appointments and every time I would kind of be like, “What do you think?” and he was doing really well with both and so every time she would kind of say, “he’s doing really well with both,” and he would keep saying, “I just want two implants,” and what was interesting was that if the batteries died in his hearing aid, he wouldn’t always recognize or let us know. If the battery died in his cochlear implant, immediately he would change the batteries. So that was what he was relying on. So eventually after a couple of years, continually reviewing it and talking about it, our surgeon looked at our stuff and was like, you know he’s getting a little bump from his hearing aid when they’re both together, but it’s not that much more when he’s just using the implant alone. When he would just wear the hearing aid he wouldn’t understand anything we were saying. At the times where he was just using the hearing aid, this wasn’t helping him at all. So the surgeon looked at everything and said, you know, he’s in mainstream school now, it’s going to start getting harder, he needs as much access to sound as he can get. She recommended it and he was so excited, we got the insurance letter, we got back from vacation and they were all in bed and my husband and I were looking through the mail and this morning I woke him up and I handed it to him and said look what you got and he started cheering and it was really sweet and I’m mad I don’t have it on video. He was so excited, he really wanted two implants and I thought that said a lot about what that meant to him.
J: That’s so crazy that he could—one of our later episodes, we’re gonna talk about self-advocacy skills. It’s so great that he was advocating for himself from such an early age.
C: He learned a lot of good self advocacy things here at Child’s Voice.
T: I’ve had a few families that their children were doing well or… they could clearly benefit from the cochlear implant but the child wasn’t at a point to vocalize or verbalize that. So that’s a really interesting story, I feel like, to share. Not that every child is the same, but I’ve definitely had families where the child was older, they’ve had hearing aids, and it’s really ahrd for them to decide to make the switch even though all of the audiology testing is showing them that it would benefit them and to have an example of a kid who is asking for that switch I think would be really great to show them that they may be doing well they may be functioning now but think about how difficult it is for them.
C: And that was a big thing for us, I just knew he was doing great, he was doing great in school, he’d made the transition to mainstream but I knew how much work it was for him. And I knew that the work at school was gonna get harder. I knew that at age 8 the brain plasticity starts to change and it’s not as easy for them to rehab it and for me I was kind of like I really feel like we need to do this before he turns 8 so I was thankful that it worked out that way because I just think it makes it easier for him. He’s less tired at the end of the day because he’s got two ears that are just easier for him to access sound.
J: I feel like some families… most families at a certain point struggle with this device is in your child’s head, and it’s a really scary new thing, most families have never seen a cochlear implant before they get told that that’s what their kiddo could benefit and so to have a child saying, “I want this” is so so cool because in that early stage so many parents are going, “I don’t want this!”
C: Oh I totally get it, that was another thing going from cochlear implant to hearing aids like there’s this magnet on his head. And now I’m like it’s so dumb and they’re such a part of him. I remember thinking when he was first diagnosed, thinking, “Do you think he’s gonna want to take his hearing aids off for school pictures?” and now I’m like if he did that I would be so mad because it’s not something to be ashamed of because that’s who you are. It’s a part of you and he would never– I mean he likes the biggest brightest colors and all of the stickers– but it is a really, in the beginning it is a weird thing that I think parents—I will say you get over it, you really do, but I do understand that, I had the same thought, it’s so much bigger and there’s a magnet on his head.
J: And people are somewhat familiar with hearing aids, they don’t know what cochlear implants are.
C: Yeah they’re like, ”What is that thing on his head?”
J: And now he’s like, “I want more!”
C: Yeah he wants two.
T: Great, well on that note, do you want to start – do you think we should start wrapping up, Jessica?
J: Yeah I think so, before we get into our calls to action and how you can reach Tatum and I, we wanted to tell that you Colleen is a host of a podcast herself and it’s called A Year of Listening and it’s so good, do you want to talk about a little bit about that and where we can find you?
C: Sure! It has nothing to do with hearing loss (laughs). But it is a podcast where we try to, we tackle all of the topics your mother warned you never to discuss at cocktail parties. So all of the controversial, hot button issues, that we as a society are having a hard time talking about, I tackle with new guests each week. I’m trying to have them with civility and compassion and nuance and a lot of respect. It’s a weekly podcast.
J: And it’s so good! I’ve listened to a few episodes now and they’re on my queue of episodes to listen to next.
C: Thank you!
J: Where can our listeners find you?
C: You can find me on Instagram and twitter, I’m @colleenkpowell and if you’re interested in the show it’s @yearoflistening on twitter and Instagram. We have a facebook group that’s the year of listening podcast. I think you can also find information about the show on my website: colleenkpowell.com.
J: And then we’ll put all of that information in the show notes so that you can find all of that online at childsvoicesho.wpengine.com and then also we’ll put your email on there so if families have questions about questions to ask….
C: Yes if you’d like to know that list, because I kind of touched on the questions but I didn’t go into all of them so if you are interested in my list of questions, I’m happy to send them to anybody who is interested.
T: Awesome, great, and listeners we would love to hear from you. Professionals, how do you help guide families through the cochlear implant process? Was anything discussed today new for you? Families, what has your own experience been like or if you have already been through the process, what advice do you have for other families?
J: Thank you all for joining us for another episode of All Ears at Child’s Voice. Be sure to join us for our next episode where we’ll be talking to two early intervention therapists about a style of therapy called bagless therapy and why we believe that parents can be some of the best teachers for their kiddos.
T: Yes it should be a great discussion. As always we release episodes every other week on Wednesdays so be sure to look out for our next episode.
J: And you can find us on twitter and Instagram. I’m @jessicabrockslp and Tatum is @tatumfritzslp
T: You can also email us at firstname.lastname@example.org and you can find episode show notes and archived episodes at Child’s Voice’s website: childsvoicesho.wpengine.com.
J: And this is the last one, if you are interested in learning more about Child’s Voice, Child’s Voice is on Facebook and Twitter and Instagram with the handle @childs_voice.
T: Awesome, we’ll see you next time. Bye!
J: And from our friends at Child’s Voice:
Kiddos: Bye! Thanks for listening!