Latest / Starkey Sound Bites: Hearing Aids, Tinnitus, and Hearing Healthcare / Balancing Sound and Silence: A Personal Story of Childhood Hearing Loss

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Balancing Sound and Silence: A Personal Story of Childhood Hearing Loss · Starkey Sound Bites: Hearing Aids, Tinnitus, and Hearing Healthcare

• 0:01
  SPEAKER_00: Welcome to Starkey Soundbites.
• 0:03
  SPEAKER_00: I'm your host, Dave Fabry, Starkey's Chief Innovation Officer.
• 0:07
  SPEAKER_00: We're nearing the end of summer, and with that, of course, is the rite of passage when kids get ready to go back to school or start school.
• 0:15
  SPEAKER_00: And today on the on the podcast, what we want to do is talk to the parent of a child with hearing loss.
• 0:23
  SPEAKER_00: And I'm delighted to have my friend and colleague, Nikki Heeman, who works at Starkey.
• 0:29
  SPEAKER_00: And her her daughter, Kaylee, was born with a hearing loss.
• 0:34
  SPEAKER_00: And we'll talk about that a little bit today in this podcast.
• 0:39
  SPEAKER_00: Thank you for joining us.
• 0:40
  SPEAKER_01: Thank you for having me.
• 0:41
  SPEAKER_00: I know that with this topic for you, it's a very personal one.
• 0:47
  SPEAKER_00: We know that while a lot of the focus these days is on hearing loss in the aging population.
• 0:54
  SPEAKER_00: And this summer there were some of the findings that were reported from those with untreated hearing loss and cognitive decline.
• 1:03
  SPEAKER_00: Another very important but often overlooked area, particularly in the U.S., is hearing loss in infants and children and congenital and early hearing loss.
• 1:14
  SPEAKER_00: And this is an area that you and I have talked about a bit.
• 1:17
  SPEAKER_00: And I'm delighted that you're willing to uh come on the podcast and talk a little bit about that today.
• 1:24
  SPEAKER_01: Well, thank you for having me, and I'm happy to share and see who we can help.
• 1:29
  SPEAKER_00: Exactly.
• 1:29
  SPEAKER_00: So so first, uh, let's talk about you.
• 1:32
  SPEAKER_00: Um describe your role at Starkey.
• 1:36
  SPEAKER_01: Uh yeah.
• 1:36
  SPEAKER_01: So I um in on the HR leadership team, I have a business partner role.
• 1:43
  SPEAKER_01: I support different executives in the organization.
• 1:46
  SPEAKER_01: Um and my uh goal is to always work with the executives and challenge them to think about their people in different ways and how can we develop them or use them differently or you know, continue to advance um not only our own capabilities, but but our people that are working in the organization.
• 2:07
  SPEAKER_00: I think that's perfectly suited to skill sets that you have to be an advocate and and advocate for yourself in your work environment, but also in terms of in the case of your daughter Kaylee, um, in terms of her education and also with the unique uh uh situation with you will with a significant hearing loss and thinking about how it is uh that that might impact her educational experience.
• 2:36
  SPEAKER_00: So let's talk a little bit about Kaylee.
• 2:37
  SPEAKER_00: How old is she?
• 2:39
  SPEAKER_01: Uh she turned three a little bit ago.
• 2:41
  SPEAKER_01: Um, so yeah.
• 2:43
  SPEAKER_01: Um she loves to sing and dance and run around.
• 2:50
  SPEAKER_01: Uh so yeah.
• 2:51
  SPEAKER_00: All things uh young young kids do.
• 2:54
  SPEAKER_00: I just became a grandfather uh earlier this year, and so I'm experiencing some of that all over again.
• 3:00
  SPEAKER_00: Except as a grandfather, you get to see their smiling faces come in, but if they cry, or this is she's just an infant, Charlotte, my granddaughter, uh, then she can go back to her mom, too.
• 3:10
  SPEAKER_01: Yeah, exactly.
• 3:11
  SPEAKER_01: And you get to sleep through the night.
• 3:12
  SPEAKER_00: And I get to sleep through the night and just try to spoil her the best I can.
• 3:15
  SPEAKER_01: Win-win.
• 3:16
  SPEAKER_00: So and and and you know, but but on a serious note, with children and grand and grandchildren, I think a lot of people may not be aware that in the U.S., in most states like Minnesota, if not all, um, there is a mandate that some form of screening and universal screening of newborns take place before the the parents leave the hospital.
• 3:38
  SPEAKER_00: And um, I assume that that was perhaps when you first were told that Kaylee might have a hearing loss.
• 3:46
  SPEAKER_01: Yep.
• 3:46
  SPEAKER_01: Uh she failed both of her newborn hearing screenings, and I was told she was born via C-section that that was normal, don't worry about it, just have a follow-up appointment in a couple of months, and I'm sure everything is fine.
• 4:01
  SPEAKER_01: So that was our first maybe opportunity to learn that maybe something was different with my daughter.
• 4:08
  SPEAKER_00: Yeah.
• 4:09
  SPEAKER_00: And so you had had no prior um knowledge or or there were no risk factors that you were aware of.
• 4:17
  SPEAKER_00: So this kind of caught you, like it does for many parents.
• 4:20
  SPEAKER_00: And it's estimated between one and three per thousand births um have a genetic hearing loss.
• 4:27
  SPEAKER_00: Uh and so, in in the case of individuals born with that genetic complication, but then we also know that there are other conditions, elevated temperature and other things that can cause hearing loss after birth.
• 4:40
  SPEAKER_00: But um, so when you were in the hospital, um, they likely did autoacoustic emissions, I'm guessing, is the first level screen.
• 4:47
  SPEAKER_00: We'll get a little wonky here, but given that many of the people listening to our podcast are hearing care professionals, um, the first line of screening in many cases, you said she she failed both screening uh initiatives.
• 5:01
  SPEAKER_00: Were they both in the hospital?
• 5:02
  SPEAKER_01: Yeah, they were failed.
• 5:03
  SPEAKER_00: So they probably did autoacoustic emissions, which is a matter of just putting a sound in the ear canal and literally measuring an echo that comes back in the event that the the baby has normal hearing.
• 5:16
  SPEAKER_00: And and it really tells a little bit of the screening level and mild to moderate hearing loss.
• 5:21
  SPEAKER_00: And so it's it's a screening measure, first level screening that doesn't give you a lot of detail other than to say, yeah, it's likely there's a problem.
• 5:28
  SPEAKER_00: The second level screening is probably uh auditory brainstem response, where now they're putting a sound, usually clicks or or sometimes tones, into the ear and they're measuring the neurological projection.
• 5:43
  SPEAKER_00: And so that one you were familiar with, but it's probably autoacous emissions, is what most people in many facilities are using as a first-line screener, followed by ABR.
• 5:52
  SPEAKER_01: Yep.
• 5:52
  SPEAKER_00: And then it's interesting, um, you know, one of the issues that we've seen, and we really owe our profession, my profession, owes a debt of gratitude to Marion Downs and others before who um really stressed the importance of newborn hearing screening.
• 6:07
  SPEAKER_00: If there have been any detractors, it has often been that it's not just the screening that's important, but then what happens after that.
• 6:15
  SPEAKER_00: And the urgency is often a challenge.
• 6:18
  SPEAKER_00: And if you're comfortable, um we talk about hearing loss in any age is often an invisible disability, unless it's, you know, there are some certain hearing losses and and um syndromes that are accompanied by maybe a deformation of the external ear, something you can see.
• 6:35
  SPEAKER_00: But in most cases, it's an invisible disability.
• 6:37
  SPEAKER_00: Yep.
• 6:37
  SPEAKER_00: Absolutely.
• 6:38
  SPEAKER_00: So now with no prior concern and with that first level and then the second level screening, while you're still recovering from the C-section, um, and you're told there there may be um uh you know a hearing loss without really knowing the degree of hearing loss and saying, uh, in the next couple months, do something.
• 6:58
  SPEAKER_00: Um can you talk a little bit about how you and your family dealt with that sort of you know very stressful news on otherwise you have this perfect child.
• 7:10
  SPEAKER_00: There's it doesn't no no visible disability.
• 7:13
  SPEAKER_01: Yeah, I mean, it definitely was an anxious period for us.
• 7:17
  SPEAKER_01: Um, my daughter was born in the midst of COVID, so I wasn't sure if they were putting off the follow-up appointment because, you know, people were trying to avoid doctor appointments, or you know, was it really not a big deal?
• 7:31
  SPEAKER_01: Or what was it?
• 7:33
  SPEAKER_01: Um, so I remember calling them up and asking, like, hey, are you sure two months out, like it shouldn't be sooner?
• 7:40
  SPEAKER_01: And they were like, no, no, that's fine, don't worry about it.
• 7:43
  SPEAKER_01: And so, like, for two months, you know, my husband and I are like clapping really loud, banging pots, dropping things on floors, like to see if you know, she had any kind of reaction.
• 7:56
  SPEAKER_01: And of course, you know, we like probably saw some because we wanted to see some, or maybe she saw the movement or felt the vibration of you know, the loud noise we were doing.
• 8:07
  SPEAKER_00: Um Yeah, there there is a reflex, the moral reflex you're probably familiar with, or you became familiar with this where they they go out in response, but typically just to a very loud sound.
• 8:18
  SPEAKER_00: And so you lose again that subtlety.
• 8:21
  SPEAKER_00: And so, so and then complicated additionally by COVID, as you say, where many clinics were unable um to either see patients at all for a while or to certainly see the load that they needed, but but now the clock is ticking, and so you I would imagine knowing you, you immediately went into overdrive with starting to look at um what was the impact of delaying or what what to do next.
• 8:49
  SPEAKER_00: Is that correct?
• 8:50
  SPEAKER_00: You kind of start looking, going on going to Google, Dr.
• 8:53
  SPEAKER_00: Google.
• 8:54
  SPEAKER_01: Oh, such a bad idea.
• 8:55
  SPEAKER_01: But yes, started going down the Google, you know.
• 8:59
  SPEAKER_01: Um uh there's so many different rabbit holes you can go down there with hearing loss, and what is it, and what could it be?
• 9:07
  SPEAKER_01: And is it genetic?
• 9:08
  SPEAKER_01: Is it usher's?
• 9:09
  SPEAKER_01: Is it you know, what what what is it?
• 9:12
  SPEAKER_01: And so yeah, just at some point I just had to go like, nope, okay.
• 9:15
  SPEAKER_01: Yeah, we're we're just gonna go to the appointment and we're gonna see.
• 9:19
  SPEAKER_00: Um so when did you then have the follow first follow-up appointment for more uh diagnostic testing?
• 9:27
  SPEAKER_01: Uh at two months she had her ABR.
• 9:29
  SPEAKER_00: Okay.
• 9:30
  SPEAKER_01: Um, and that is when she had no response to any of the stimuli.
• 9:34
  SPEAKER_01: I think they went as loud as uh rock concert to try and you know add a pictogram to this um audio audiogram um to you know make it understandable for parents and non-hearing professionals.
• 9:49
  SPEAKER_01: But yeah, she had no no response at all.
• 9:53
  SPEAKER_01: And I just remember just and even though I'm trying not to, but you know, just grieving.
• 9:59
  SPEAKER_01: Like, what do you mean?
• 10:01
  SPEAKER_01: For two two months she hasn't been able to hear anything.
• 10:04
  SPEAKER_01: You're telling me that my daughter has a severe to profound hearing loss.
• 10:09
  SPEAKER_01: What does that mean?
• 10:11
  SPEAKER_01: I don't know sign language.
• 10:14
  SPEAKER_01: Can she have hearing aids?
• 10:15
  SPEAKER_01: Like, I mean, just all of the things that just what did I do something wrong?
• 10:21
  SPEAKER_01: You know, all of those things.
• 10:22
  SPEAKER_00: Yeah, it suddenly just rocks your world.
• 10:24
  SPEAKER_00: I mean, it's sort of in the Baz Lerman wear sunscreen moment where he talks about, you know, don't worry because worrying isn't productive.
• 10:32
  SPEAKER_00: It's like trying to do algebra problems while you're chewing gum.
• 10:36
  SPEAKER_00: It's a it's sort of a mindless exercise, but the real things that impact your life occur and come out of something like this.
• 10:43
  SPEAKER_00: He talks about a random Tuesday afternoon, but I can imagine whatever day that was, that rocked your world.
• 10:48
  SPEAKER_00: Now, for some of the professionals, um, I've had the the um opportunity to work with parents and and and to be involved in breaking that news.
• 10:59
  SPEAKER_00: And I can tell you that on the professional side, it's it's not any, I mean, it's not it's not my child, but it's not any easier to break that news when when you you know, sort of this phenomenon of my perfect baby, my perfect child, and to have to break that news is is very challenging.
• 11:16
  SPEAKER_00: And one of the things for professionals um that that that I could advise, and I'd be in curious about you, is that once you get to the point of saying your child has a severe to profound hearing loss, stop talking.
• 11:31
  SPEAKER_00: And because you're I I would imagine at that point, like you said, you just sort of shut down.
• 11:36
  SPEAKER_00: I shut down you don't hear anything else after that.
• 11:38
  SPEAKER_01: Nope.
• 11:39
  SPEAKER_01: And I mean those words are they mean something in the hearing community and to hearing professionals, but I was like, what what what does severe to profound mean?
• 11:49
  SPEAKER_01: Like, yeah, is she is she deaf?
• 11:51
  SPEAKER_01: Can she hear something?
• 11:52
  SPEAKER_01: Can she hear uh so yeah, I I would say stop talking, let us process that, you know, uh very big bomb that we just got dropped on our lap, and you know, just be there for us and help answer our questions as we are ready to start asking.
• 12:08
  SPEAKER_00: Yeah, because sometimes um one of my mentors would often schedule a second appointment after the news gets broken, and then say, Do you have any immediate questions?
• 12:20
  SPEAKER_00: But then otherwise stop telling me things because I'm not thinking clearly if I'm on the parent side and schedule another appointment, give them some opportunity to deal with the weight of this and then come back with questions and and issues.
• 12:34
  SPEAKER_00: And was that was that kind of the way you had it?
• 12:36
  SPEAKER_01: Yeah, and I have definitely even asked for additional appointments, like, hey, can I have one now that I've kind of processed some of the emotions of it and I'm not, you know, like crying and you know, all of the things.
• 12:49
  SPEAKER_00: So yeah, it's it's an entirely different clinical experience, an emotional experience from uh, in many cases seeing an older person start to come to grips with the term that that they have hearing loss.
• 13:02
  SPEAKER_00: I I do think that we have an age-related prejudice related to hearing loss in the sense that for children we do universal newborn hearing screening.
• 13:10
  SPEAKER_00: I think that we need to raise awareness for hearing loss so that when you get the welcome to Medicare exam, that you get an actual hearing test, just so you know where the where the baseline is moving forward, you're likely to have hearing uh hearing troubles.
• 13:24
  SPEAKER_00: But this notion of giving people time to come to grips with it, but now the unique situation with a young child the clock's still ticking.
• 13:35
  SPEAKER_00: Now we know and we we we we know there's a correlation with untreated hearing loss and cognitive decline in elderly.
• 13:43
  SPEAKER_00: Let's talk a little bit about you know the speech and language uh uh impact of getting the language in to a young child as soon as possible.
• 13:52
  SPEAKER_00: So now two months you get the ABR.
• 13:54
  SPEAKER_01: Yep.
• 13:55
  SPEAKER_00: You deal with the gravity of this situation.
• 13:58
  SPEAKER_01: Yep.
• 13:58
  SPEAKER_00: What's next?
• 14:00
  SPEAKER_01: Uh a blur of appointments.
• 14:03
  SPEAKER_01: Um we met with a pediatric ophthalmologist, she had an ultrasound of her brain, she had an EKG of her heart, we did CTs and MRIs, we met with a neurologist, we did genetic testing, we did all of these things, and then we finally figured out to test for a virus called CMV.
• 14:26
  SPEAKER_01: Um, and it wasn't until we got those positive results back that we realized that, you know, she got she's deaf or severe to profound hearing loss because of a virus.
• 14:38
  SPEAKER_00: Yeah.
• 14:39
  SPEAKER_00: And, you know, going through all of those other tests to look at the comorbidity, which can occur with syndromes, with uh conditions that can be present at birth or shortly after birth, um, is excruciating because now you're waiting for the other shoe to drop, no doubt, waiting to see what else are we gonna have to deal with in addition to the hearing loss.
• 14:59
  SPEAKER_00: The hearing loss, not enough, is enough, but then looking and ruling all those things out.
• 15:03
  SPEAKER_00: I can only imagine what you were going through.
• 15:05
  SPEAKER_01: Yeah, I mean, it's it's you know, okay, she can't hear, and now you're telling me she needs an ultrasound of her brain.
• 15:13
  SPEAKER_01: Like, what is if there's things wrong with her brain?
• 15:15
  SPEAKER_01: Is her heart, is she gonna need heart surgery?
• 15:18
  SPEAKER_01: Um and the the eye doctor that we went to was one of the first appointments.
• 15:22
  SPEAKER_01: Um, my daughter has pigmentary retinopathy, so she has some damage to her retinas.
• 15:28
  SPEAKER_01: Um, and so the eye doctor immediately jumped to, I think she has Usher syndrome.
• 15:33
  SPEAKER_01: So for a while there, we were up operating under the assumption that she probably would have Usher syndrome, which is what Helen Keller had, um, which means she would for sure lose her sight.
• 15:45
  SPEAKER_01: And so she would not only be deaf but blind as well.
• 15:48
  SPEAKER_01: And it wasn't until we did genetics and ruled out, nope, it's not Usher's.
• 15:53
  SPEAKER_01: And we're still waiting for that CMV test that didn't happen until later that we were like, okay, well, now what is it?
• 16:00
  SPEAKER_01: We we don't have the genetic component, it's not Usher's, it's you know, not any of these other things.
• 16:06
  SPEAKER_01: And um yeah, it was a very scary period for sure.
• 16:11
  SPEAKER_00: And and again, for the professionals listening in here, I think um the pro tip out of this is remember that you're not dealing with textbook cases anymore, and you shouldn't just throw out options because as a parent uh in going through this, you're gonna go down every rabbit hole that is is is teed up for you.
• 16:32
  SPEAKER_00: And so just use the grace to remember that you're dealing with humans and humans.
• 16:38
  SPEAKER_00: Uh uh, we're gonna be emotional and we're gonna go down rabbit holes.
• 16:42
  SPEAKER_00: For sure.
• 16:43
  SPEAKER_00: So now um diagnosis of severe to profound hearing loss as a result of CMV.
• 16:50
  SPEAKER_00: Um and then um what was the next step?
• 16:53
  SPEAKER_00: Was it uh hearing aids?
• 16:55
  SPEAKER_00: Did you begin the discussion regarding cochlear implants?
• 16:59
  SPEAKER_01: Um we started hearing aids almost straight away So how old was she?
• 17:04
  SPEAKER_01: Probably three months old.
• 17:07
  SPEAKER_00: That's that's like you know, unfortunately still not the norm in many cases because of that delay, the delays that occur in getting appointments scheduled, in in especially with COVID then.
• 17:21
  SPEAKER_00: And then also still denial is a powerful um is is is a powerful deterrent to action.
• 17:29
  SPEAKER_00: So I applaud you for then at three months really beginning that process.
• 17:34
  SPEAKER_00: Talk about that.
• 17:35
  SPEAKER_01: Yeah, I mean, I still have her little ear molds and the different colors.
• 17:39
  SPEAKER_01: You get to pick out the color, and you know, so that's a little bit of help, I guess.
• 17:44
  SPEAKER_01: Because it's like, oh, she's a girl, I'll do pink, or you know, whatever.
• 17:48
  SPEAKER_01: Um so now I'm like, okay, now I have to use this, these hearing aids, this technology that I I know nothing about, I've never used before, and I have to try and get my infant to wear them who's starting to be on the oh, I've discovered my ears phase and pulling on them and pulling them out and um learning very quickly that you know, if the seal isn't sealed correctly, then all's mom hears is that squealing noise.
• 18:16
  SPEAKER_01: Um so um, yeah, it was it was definitely a learning process.
• 18:22
  SPEAKER_00: And this was all prior to when you joined Starkey, too.
• 18:25
  SPEAKER_00: All prior to me joining Starkey.
• 18:27
  SPEAKER_00: So chicken and egg then was was it just was there a pull towards working for Starkey as a result of the experience with Kaylee?
• 18:37
  SPEAKER_00: Or did was that just yeah, I would figure it it becomes then a passion?
• 18:40
  SPEAKER_01: Yeah, I mean, my whole world has become about helping her hear better and live better and learn language and all the things.
• 18:48
  SPEAKER_01: So when there was an opening at Starkey, doing what I love to do professionally, I was like, well, this is a no-brainer.
• 18:54
  SPEAKER_01: Like, how often do you get to do what you love to do in a company that is also your personal passion?
• 19:00
  SPEAKER_01: And now that I've been here about a year-ish, um, I'm learning that it's not so rare because there are a lot of people that, you know, share the same passion or have some connection to hearing loss and also get to work here.
• 19:12
  SPEAKER_01: So it's kind of cool to be more involved in the community.
• 19:15
  SPEAKER_00: Yeah, ever since my daughter was this tall, you know, I was saying, find your passion, you know.
• 19:19
  SPEAKER_00: And she's like, Dad, I don't understand what that means, but I think it's when you can align what you're good at professionally with something that you love to do, and then also the impact factor and and and in able to then be an advocate for Kaylee and and understand and also translate that into other um uh other situations that may come up where you might be involved in advocating for other children.
• 19:45
  SPEAKER_00: So, okay, so then so she was fitted and uh no impact.
• 19:51
  SPEAKER_01: Uh the hairs in her ears never grew.
• 19:56
  SPEAKER_01: Um, so you know, we we tried hearing aids, the, you know, we did the sound booth tests and the audiologist, um, no response, although they did, you know, prepare us to potentially expect no response with that kind of hearing loss.
• 20:11
  SPEAKER_01: Um, so then we went through like an anatomy MRI to see if she was a cochlear implant um candidate, um, and she was.
• 20:20
  SPEAKER_01: Um, so we um made the decision to um implant her with cochlear implants, and she was implanted at nine months and activated at 10.
• 20:31
  SPEAKER_00: Wow and and and bilaterally.
• 20:34
  SPEAKER_01: Bilaterally, yes.
• 20:35
  SPEAKER_00: And so so until that then, now was she is she your first?
• 20:40
  SPEAKER_01: She's my second.
• 20:41
  SPEAKER_00: Second.
• 20:41
  SPEAKER_00: Okay, so how old is her older sibling?
• 20:45
  SPEAKER_01: Uh he will be five pretty soon.
• 20:47
  SPEAKER_00: Five.
• 20:48
  SPEAKER_00: So um, what's his name?
• 20:49
  SPEAKER_00: If you know Asher.
• 20:51
  SPEAKER_00: So how did Asher handle was he when she was when you were going through the early stages of this, he didn't really probably get it.
• 21:00
  SPEAKER_01: No, I mean, I mean, he was really excited to have a sister and a baby, and you know, he is the most protective, helpful big brother, which is great.
• 21:11
  SPEAKER_01: Um, but you know, just hearing him like talk to her and like kind of broke my heart in the beginning a little bit because I'm like, oh my gosh, she has no idea.
• 21:20
  SPEAKER_01: She can't hear him.
• 21:22
  SPEAKER_01: Um, you know, so watching that was hard.
• 21:25
  SPEAKER_01: And even now that, you know, we're older and anytime she's not wearing her her processors or cochlear implants, we have to remind him like, hey, Asher.
• 21:35
  SPEAKER_01: Her we call them her ears.
• 21:37
  SPEAKER_01: Um, her ears are off.
• 21:38
  SPEAKER_01: Um, you know, remember she can't hear you.
• 21:41
  SPEAKER_01: You have to sign so she can understand you.
• 21:44
  SPEAKER_01: And um, even then, it can be really hard to, you know, remind him and remind us.
• 21:50
  SPEAKER_01: And you know, even mom and dad have to remind each other sometimes.
• 21:54
  SPEAKER_00: So you you mentioned sign language, and so you then undoubtedly learned sign language.
• 22:00
  SPEAKER_00: Yourself.
• 22:01
  SPEAKER_01: We are trying to learn, yes.
• 22:03
  SPEAKER_00: So I I mean, I think that's that's sort of an interesting point in this, too.
• 22:08
  SPEAKER_00: We talked about universal newborn hearing screening, the need for action, and you were right on timeline with getting, you know, a short a delay.
• 22:18
  SPEAKER_00: Uh advice for other parents who might be listening to this is, you know, really it's the the screening is important, but then getting the follow-up testing, the diagnostic testing, and then the proper uh prosthetic devices, whether that's hearing aids or cochlear implants, trying to just keep marching forward, knowing that all of that other host of emotions, grief and and all of that that comes along with it, but to keep moving forward because the clock is ticking on speech and language development.
• 22:48
  SPEAKER_00: Yeah and trying to get that sound in there, but more importantly, to get the language in there.
• 22:54
  SPEAKER_00: You mentioned ASL.
• 22:56
  SPEAKER_00: So you're learning ASL.
• 22:57
  SPEAKER_00: And your son does he picked up ASL too?
• 23:00
  SPEAKER_01: Yep, he's learning it with us.
• 23:02
  SPEAKER_01: And right, um, we we have chosen uh a bilingual, bicultural um approach, which is not for everyone, and that's okay.
• 23:10
  SPEAKER_01: Um, but even one of the reasons we started even in the beginning, even if you just do baby sign, is to your point, right?
• 23:17
  SPEAKER_01: She wasn't receiving language um through he through voice, um, through the spoken language.
• 23:24
  SPEAKER_01: So we wanted to give her as much language as as we could get her.
• 23:29
  SPEAKER_01: Um so that was our only option was visually.
• 23:33
  SPEAKER_01: So, you know, it started with baby signs of more and all done in milk and you know, the the easy things.
• 23:39
  SPEAKER_01: And um, yeah, so we just continue to try and even now give her as much language in both as possible so that you know she can continue to acquire and during this uh I think it's zero to five is the critical language period and continue to develop cognitively.
• 23:58
  SPEAKER_00: Yeah, it it's really commendable that you you because really the the way we've talked in the past, you wanted to make the decision, you didn't want to make the decision for her.
• 24:07
  SPEAKER_00: I mean you're choosing with with the implants, and you know, if hearing aids have been able to help, you would have been fitted with I I I know I know a manufacturer of hearing aids that you know had we been able to reach that, that would have been a great solution, but but with no measurable hearing under under ABR or behavioral testing, um, it was you're really the choice was kind of made for you, yeah.
• 24:29
  SPEAKER_00: Um, but that then still wanting to get speech and language in there and marching on with that.
• 24:35
  SPEAKER_00: But but I remember one of our early discussions was that you you didn't want to choose for her whether she wanted she chose to participate in the oral uh world or sign language world, and you're giving her and committing with you, your husband, your son to to try to give her that opportunity to when she gets old enough to choose what what she's going to use to communicate, or perhaps it will be both and continue to be both.
• 25:03
  SPEAKER_00: Um but but it's interesting.
• 25:06
  SPEAKER_01: Yeah, I mean, we found that, you know, right, there are all these things that I knew very little about, um, and things like hearing fatigue that I can't relate to.
• 25:18
  SPEAKER_01: And so it just felt only natural that I should give her as many options as possible and set her up for success so it she can tell me which language she wants to learn in and which one can supplement the other, or you know, how she wants to communicate because I have no idea how she's gonna respond to sound, or you know, if she's gonna love it or hate it.
• 25:40
  SPEAKER_01: And we got really lucky.
• 25:42
  SPEAKER_01: She loves it.
• 25:43
  SPEAKER_00: So yeah, I mean, it it's a tremendous commitment and a tremendous gift that you've given to her to give her the opportunity to make that choice when she gets older as to how it is and where she chooses to uh communicate through oral, through manual, through both.
• 25:58
  SPEAKER_00: Um, and um and I would imagine you've had plenty of armchair quarterbacks along the way kind of advising you one way or the other.
• 26:06
  SPEAKER_00: And I think that's another issue is that you know, then uh with this uh very challenging uh diagnosis, then you got lots of opinions.
• 26:16
  SPEAKER_00: Everyone has an opinion.
• 26:17
  SPEAKER_00: And uh and you you set a course and and stayed deliberate to that, and you were a strong and continue to be a strong advocate for her.
• 26:25
  SPEAKER_00: So I I commend you and your family.
• 26:28
  SPEAKER_00: So given that we're gonna be back in in school, now now Kaylee's still just three, so um I would imagine now uh is she in any sort of formalized or play?
• 26:40
  SPEAKER_00: You talk a little bit about groups that she might be in to help with that engagement with other kids, with adults, with with speech and language development.
• 26:48
  SPEAKER_00: What are you doing?
• 26:49
  SPEAKER_01: Yeah, um, so you know, we're not, you know, at kindergarten or, you know, grade school, we're not at those places yet.
• 26:56
  SPEAKER_01: Um, but you know, we still are doing the education plans.
• 27:01
  SPEAKER_01: Um, we're still working with our school district to develop goals and measure her progress.
• 27:06
  SPEAKER_01: Um, so with our bilingual approach, she goes part-time to an oral school in Roseville that takes time to help her learn how to hear and speak.
• 27:16
  SPEAKER_01: And then she goes part-time to the deaf school in St.
• 27:19
  SPEAKER_01: Paul that helps her, you know, learn how to sign and communicate visually.
• 27:23
  SPEAKER_01: So she we're doing a hybrid approach right now.
• 27:25
  SPEAKER_01: And then my hope is um by the time she um hits kindergarten, um, she'll be able to tell me her preference um for schooling and we'll go from there.
• 27:36
  SPEAKER_00: Awesome.
• 27:37
  SPEAKER_00: So any advice that you have, I would imagine.
• 27:40
  SPEAKER_00: So we're we're like you said, you're not in kindergarten or elementary school, um, but you have neighbors and and other kids playing with her.
• 27:50
  SPEAKER_00: Any advice for family members or or you know how to how to approach the subject of hearing loss and use of hearing aids or cochlear implants with family, with neighbors, with neighbors' kids.
• 28:04
  SPEAKER_00: Any any counsel?
• 28:06
  SPEAKER_00: Words of wisdom?
• 28:08
  SPEAKER_01: Yeah, I mean, um I would say don't be afraid to speak up for your kid and you know, just be upfront and start the conversation like, hey, those are my daughter's cochlear implants, they help her hear, her ears don't quite work.
• 28:24
  SPEAKER_01: Um, you know, um, and then, you know, for for those out there that don't have the exposure to the hearing world, I would say don't be afraid to ask questions, right?
• 28:35
  SPEAKER_01: Seek to understand, seek to learn.
• 28:38
  SPEAKER_01: Um, because it's it's an awesome community, and the more we know, the more we can help each other.
• 28:44
  SPEAKER_00: Yeah, I think it it borrow the old phrase, it it does take a village.
• 28:49
  SPEAKER_00: It does take a village.
• 28:50
  SPEAKER_00: About family and and extended family and and community and uh and the educational community.
• 28:56
  SPEAKER_00: And so, you know, what do you see?
• 28:59
  SPEAKER_00: I mean, she's three now, so her personality is already developing in terms of her sense of humor, the things she likes to do that you shared.
• 29:08
  SPEAKER_00: Uh, what do you see for her future?
• 29:11
  SPEAKER_01: Um, she is bright.
• 29:13
  SPEAKER_01: Um, every time we hit a milestone or a challenge, um, we we we push hard to give her the additional services she needs so she can meet it.
• 29:24
  SPEAKER_01: And then every time she beats that milestone, um, so every time she just blows me away and she's just a bright ball of sunshine, she'll do it with a silly smile on her face while dancing.
• 29:38
  SPEAKER_01: And, you know, yes, I can say that phrase, you know, absolutely, mom.
• 29:43
  SPEAKER_01: How dare you?
• 29:43
  SPEAKER_01: Like, why would you even question that?
• 29:45
  SPEAKER_01: Um, so I I I have stopped uh trying to predict what she will do and just kind of let her take charge because that's kind of her personality.
• 29:57
  SPEAKER_00: Yeah, you're you're not only teaching, but you're learning something.
• 29:59
  SPEAKER_01: I am learning a ton.
• 30:01
  SPEAKER_00: Do you have can you share a particularly memorable story um related either with her hearing loss or something she perceived, you know, we're it's our differences that make us better.
• 30:13
  SPEAKER_00: Anything that came as a result of her hearing loss or a use of her implant or any memorable stories that you care to share?
• 30:19
  SPEAKER_01: Yeah, it was probably the first snow in 2021 after she had been implanted and activated.
• 30:27
  SPEAKER_01: And I remember taking my kids to the window and being like, Oh, look, do you see the snow outside?
• 30:32
  SPEAKER_01: It's on mommy's car.
• 30:34
  SPEAKER_01: Do you see it?
• 30:35
  SPEAKER_01: And I remember looking at my daughter Kaylee, and she would go, and she pointed to her nose and she said, No, s nose.
• 30:42
  SPEAKER_01: I go, why is she saying nos?
• 30:45
  SPEAKER_01: And oh, oh no, I'm not saying nos.
• 30:48
  SPEAKER_01: I'm saying snow, like because they kind of sound similar and to somebody who's very new to language and sound, and and and and I remember just kind of crying, being like, A, she understood me, like, but you know, B, then she also like misunderstood me because she thought it was I was saying nos and not snow.
• 31:08
  SPEAKER_01: Um, and just kind of came to this realization that I'm gonna have to be very articulate in how I enunciate and you know, continue to make sure that her and I are understanding that we're saying the same thing so that she can continue to learn.
• 31:24
  SPEAKER_01: So that that's one that always kind of stands out to me.
• 31:27
  SPEAKER_01: Happy Nose Day.
• 31:29
  SPEAKER_01: I love it.
• 31:30
  SPEAKER_00: I love it.
• 31:30
  SPEAKER_00: Yeah, Nose Day in the future.
• 31:31
  SPEAKER_00: Yeah.
• 31:32
  SPEAKER_00: I get a stamp from school.
• 31:33
  SPEAKER_01: Yes, exactly.
• 31:34
  SPEAKER_00: Well, I you know, I really thank you for sharing your journey and Kaylee's journey with hearing loss.
• 31:43
  SPEAKER_00: And I know that there's a lot of important information that you've shared for professionals, for potentially parents who are are similarly going through, you know, some of them going through similar processes with this, and some of the guidance and advice that you've given, I know will be helpful.
• 31:59
  SPEAKER_00: And and I thank you for doing that with and sharing us uh your story on Soundbites today.
• 32:05
  SPEAKER_01: Thank you for having me.
• 32:06
  SPEAKER_00: My pleasure.
• 32:07
  SPEAKER_00: So, for listeners, we thank you for listening to this special episode of Soundbites.
• 32:12
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• 32:18
  SPEAKER_00: And if you have ideas for future topics that we can deal with or bring in uh other individuals um who can talk about their experience, their journey, some technology, we want to hear from you.
• 32:30
  SPEAKER_00: So send us an email at soundbites at Starkey S-T-A-R-K-E-Y dot com and um share this episode with someone that you think might benefit from this discussion.
• 32:43
  SPEAKER_00: Share with your network, your friends, your colleagues.
• 32:46
  SPEAKER_00: And um most importantly, I I want to thank you sincerely for listening and watching this episode.
• 32:52
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• 32:57
  SPEAKER_00: Uh we'll look forward to seeing and hearing from you again very soon.