Today’s episode is a conversation with Dr. Ruth Reisman, https://www.urbanhearing.com/about-us

about the connections between auditory processing disorder (APD) and
Attention Deficit Hyperactivity Disorder (ADHD). We discuss the process of evaluation and how a tailored treatment plan can help people who are finding listening and processing spoken language to be challenging.

SHOW NOTES & TIME STAMPS:

• Introduction and background
• 2:19 - Becoming an audiologist. Advice for students.
• 4:57 - What is APD?
• 6:20 - Signs you may want to explore APD evaluation.
• 7:28 - The frustrations and misunderstandings surrounding under/misdiagnosed APD.
• 8:25 - Process of APD diagnosis.
• 12:00 - Every patient is unique! Overlaps between APD and ADHD.
• 18:00 - Multiple reasons why people interrupt?
• 19:42 - Developing a treatment plan for APD.
• 24:57 - The value of diagnosis/label.
• 28:13 - Overlap and similarities between APD therapy and aural rehabilitation following cochlear implantation/ hearing aid usage.
• 31:20 - Cautioning about generalized advice for patients, eg. “listen to audiobooks, listen to music while following the lyrics.
• 32:15 - Complexity of music.
• 33:30 - The diversity of patients and focusing on each individual’s story.
• 34:26 - Building a relationship with your audiologist.
• 34:39 - Ways to work with Dr. Reisman, in New York, Florida and Bermuda, virtually as well.

RELATED EPISODES:

ALL ABOUT AUDITORY PROCESSING DISORDER & SOUND SENSITIVITIES

PERSONAL EXPERIENCE WITH AUDITORY PROCESSING DISORDERS

https://www.podchaser.com/podcasts/thriving-in-the-midst-of-chaos-934874/episodes/auditory-processing-disorder-w-81682839

https://podcasts.apple.com/us/podcast/episode-18-auditory-processing-disorder-apd-crash-course/id1524865133?i=1000519524920

TRANSCRIPT:

[00:00:00] Dr. Lilach Saperstein: Welcome to the All About Audiology podcast. I’m your host, Dr. Lilach

Saperstein and I’m very excited today to be speaking with Dr. Ruth Reisman in New York. I know that many, many of you have questions about auditory processing disorder, the process of getting diagnosis, what the treatment is, what even is auditory processing disorder in kids and adults.

So, I’m really excited for a very informative conversation. First, let me welcome Dr. Ruth.

How are you? Welcome.

[00:00:34] Dr. Ruth Reisman: Thank you. Thank you so much. It’s a pleasure to be here and to have the opportunity to speak with you and present on this platform. I am, as you said, from New York. I support the audiology field in multiple aspects.

In addition to my private practice where I do work with individuals that have auditory processing disorders predominantly focusing on individuals that actually have. ADHD as a comorbid disorder. And I’ll explain as I go into that, as to why that became my area of focus or a specialty.

[00:01:06] Dr. Lilach Saperstein: I have to tell you right away that that Venn diagram I discussed that Venn diagram on the regular, so we’re going to go into that for sure.

[00:01:14] Dr. Ruth Reisman: Great. Great. I’m excited to talk about it and, and, and let you know how I got into that. And then in addition to that, I do work at a cochlear implant company or hearing implant company, I should say, cuz it’s not just cochlear implants called Medel. So, we support patients with their implants as well and, and aural rehabilitation, just like auditory processing comes into play in that arena as well. And then one of my favorite things to do is to teach at the university and I teach multiple classes on, on all of these wonderful things, aural rehab, hearing aids, so I’m happy to talk about anything always related to audiology.

[00:01:50] Dr. Lilach Saperstein: Same. Anytime we find someone who’s going to talk to me about these things, I’m like totally into it.

sign me up. These are my topics. So, I think a lot of people are curious as to how you got into audiology in the first place. You know, if you thought at the beginning when you got into it that you would be involved in all these other things down the line.

[00:02:11] Dr. Ruth Reisman: Yeah, no, that’s a great question. I guess audiology kind of chose me, which I, which I always say as I go through the field, all of these areas kind of choose me.

Initially I had started actually in pharmacy, so I was doing a lot of science-based courses. I actually witnessed my mother suffer through hearing loss, so she had bilateral otosclerosis as she was having children and, and as we were growing up it got progressively worse. So, I’ve seen her go through the process of diagnosis, getting hearing aids and then getting surgery and her hearing actually going back to normal.

So, it was a really interesting, to witness her go through all of those stages and I became really very interested in the field of audiology. It started of course with, with speech therapy, like the majority of audiologists start, and I kind of got into the field that way, but I fell in love with audiology because of the diagnostic and the rehabilitative nature and how we can really see results with our patients.

[00:03:09] Dr. Lilach Saperstein: Yes, that first audiology course grabs a lot of people [laughs].

[00:03:14] Dr. Ruth Reisman: I would agree.

[00:03:16] Dr. Lilach Saperstein: Can you tell any advice for some of the students who listen? Cause we do have many students of communication disorders all around the world who message me on Instagram, always do that. Come say hi and ask for advice.

What should I do? Should this speech, should I do audiology? What advice would you have for students in general.

[00:03:35] Dr. Ruth Reisman: Yeah, I think both speech and audiology are very dynamic as fields. There’s a lot more to it than meets the eye. Right.

 I would encourage anyone who’s considering the field or who is enrolled in a speech and hearing program to go and speak to audiologists like myself and, and like you, to get a feel for what the field is about, what we’re able to do within the field, all of the options and opportunities because they’re really vast and I really think it’s such a rewarding field. Like, we really have the opportunity to do so much in terms of helping patients, diagnosing their issues, offering different rehabilitation options. And it’s not just about hearing loss and hearing aids. There’s balance, there’s tinnitus, there’s, aural rehab, auditory processing. So, it’s so, so dynamic and I think communicating or connecting with individuals that are in the field will give you a real sense of what’s available within the realm of audiology.

[00:04:34] Dr. Lilach Saperstein: That’s great advice. Connecting with actual people. You know, you can, you can Google search for a long time and listen to podcasts and you should do that, but the end of it, you know, find your local audiologist, the local community. And see if you can hop by for a day. Just watch and see what happened. That was so valuable to me when I was an undergrad.

I did that for a while.

[00:04:57] Dr. Ruth Reisman: Yeah, I would agree.

[00:04:58] Dr. Lilach Saperstein: So, let’s dive into auditory processing disorder

[00:05:01] Dr. Ruth Reisman: Sure. Mm-hmm. So, yeah, auditory processing is probably one of the more complex things that we work with in audiology. A lot of people, like I said, think of, okay, a patient has hearing loss, let’s give them hearing aids. But there are actual patients that it’s not hearing loss that is causing their hearing difficulty or causing their challenges.

Sometimes it can be in conjunction with hearing loss, but the majority of individuals that actually have auditory processing challenges usually have normal hearing. So, we test them on a hearing test. Their hearing is normal. But the way that they’re reporting their subjective responses sounds like they have a really significant hearing loss.

So, it’s this disconnect between what our hearing test is showing and what they’re actually reporting in terms of, how they function in their day-to-day life. So, it’s a very real, disorder and a way that we can kind of subjectively and objectively quantify it. And the way that we do that is we use a lot of questionnaires, subjective questionnaires.

So, we want to get insight from the patients, you know, where are they feeling like they’re having hearing challenges, what are their concerns? And then objectively actually doing testing to measure that if there is any deficit. Where does this deficit lie? So, some of the signs that you may experience that may indicate that you need this kind of evaluation is like I said, having normal hearing, but still feeling like you’re not hearing well in different environments.

A lot of times it’s in noisy environments or environments that are less than ideal, like classroom settings, office settings where it’s large open spaces. There’s a lot of reverberation, so sounds bouncing off the walls and things like that. You find communication really difficult in those environments.

A lot of my patients complain, like now that they’re going back into work after being, on Zoom calls throughout Covid, that they’re starting to have a lot of difficulty in those types of settings, in social settings, in business meetings. The kids in the school environments now going back really into their day-to-day life, they find it even more challenging than before Covid. So, there is this kind of effect that they’re saying that even Covid enhanced or created some more auditory processing challenges for individuals.

[00:07:20] Dr. Lilach Saperstein: Yeah, and I, I think from the people I’ve worked with the biggest complaint they come in with and it’s very emotional. It’s very frustrating. And no one can really explain it because they can hear they’re hearing okay, for the most part, but then they’re having all these issues so it doesn’t match. And when they finally find that maybe there’s a reason for those difficulties, that it’s not them being disrespectful, rude, not paying attention, like all these other explanations that are given for it.

And I had one patient specifically who told me that they were, they were called manipulative. And it was even in a, a summary of their, you know, work related that they got, evaluated as being manipulative.

It really affects people’s lives in, in very significant ways, these communication breakdowns. It’s really amazing that we can then help people find out like, “wait a minute, there might be a reason why you’re having these issues.” And tell me a little more about what the diagnostic process is like for patients, once they’ve filled out all those questionnaires and they’re like, “yes, this is the problem,” then what happens?

[00:08:24] Dr. Ruth Reisman: For sure. And I always say oftentimes we’re like the last step. So, the patient has tried everything. They’ve gone all through all their testing, they’ve seen so many professionals, and then they’re like, they come across auditory processing and they say, well, I feel like this is what I have.

 So oftentimes we’re the last step. And we do want to rule out things like hearing loss as a confounding factor, things like ADHD autism, all of those things before we get to our actual evaluation.

When we’re doing the evaluation. So, there’s two ways that it can be done now with technology, it can be done in an office with the audiologist in a booth.

Or it can actually be done virtually these days, which is great, where we can actually get a calibrated, signal. So, all of our test materials are calibrated to be assessed, even virtually. And the patient will go through a series of tests and, and there’s a portion that’s done with the audiologist, at least in our practice.

And we also, give the patient an assessment via an iPad. And they go through a series of challenging their system under different conditions. So, we’ll get a baseline in quiet, see how they do in the most ideal situation, and then we’ll start to make it more and more difficult for them.

So, we’ll add noise, we’ll add competing words, competing sentences, competing numbers. And then we’ll also even degrade the signal to see if the brain is able to identify. What word is actually being presented. And after all of that, there is a pretty extensive evaluation or assessment that’s done on all of those results.

And from there we create a diagnosis based on the patient’s subjective responses, based on the objective testing, based on the case history. And then we’ll look at various areas of auditory processing including decoding, which is breaking down information, tolerance fading memory, which is like hearing in the presence of background noise. Integration, so integrating signals. Organization, being able to organize information. And we look at the different subcategories and identify where the patient has the most challenges so that we can really be very intentional in our therapy for.

[00:10:37] Dr. Lilach Saperstein: Mm-hmm. I find that one of the things that helps patients understand what all this is about is to first explain that we have all of these skills, auditory skills, that our brain is doing with all the sounds that come in, that we’re putting them in order, that we are hearing, you know, the right and left ear.

 The fact of getting two signals makes a lot of different information come in. How loud it’s, how far away, where it is in our environment. So, to first say that hearing is not, you hear or you don’t hear, it’s way, way, way, way more complicated. So, then we’re trying to break down all those parts, and with the testing we’re able to see which specific skills a person might be having trouble with.

[00:11:20] Dr. Ruth Reisman: Yeah, that’s, that’s definitely a great way to put it. And it makes it very clear to the patient in terms of why we’re testing them and why their results come out the way they do. More often than not, the patients are like, okay, yes, I knew this was the case, and I’m just glad that you’re able to test it and actually validate my feelings.

So that ends up, like you said, being the most rewarding thing for them is that we’re actually able to quantify it and, and identify what it is, and then offer options for help.

[00:11:46] Dr. Lilach Saperstein: Mm-hmm. Do you feel that you see one specific type of APD most commonly or all different skills?

[00:11:55] Dr. Ruth Reisman: So, I think every patient is unique and they’ll all have a different, mix of challenges.

I think the most common challenges are probably decoding, tolerance, fading memory, and then maybe organization. Right? So especially in the population that I deal with, with the ADHD population, A lot of them, it’s the organization aspect. So not being able to stay on task, not being able to organize themselves at work or at school or feeling very flustered and things like that. So, it’s a little biased in my practice cuz that’s the, that’s the population that I deal with.

[00:12:30] Dr. Lilach Saperstein: Can you talk a little bit about the overlap, the differences? People who have a comorbid at the same time they have ADHD and APD or when you’re making a distinction between one or the other

[00:12:42] Dr. Ruth Reisman: yeah. Sometimes it’s difficult to separate the two. Oftentimes when these individuals with ADHD make it to our office, it’s when they’ve been dealing with symptoms of ADHD, like distraction, hyperactivity inability to focus, things like that.

And they’ve dealt with that for a long time, and it’s been diagnosed by their psychotherapist and, and by their psychiatrist, and they’re getting treatment for it, but they still feel like they’re having difficulty hearing and processing. So, we try to make the testing more palatable to those types of patients who let’s say, can’t, focus for a really long period of time.

So, if we need to break up the testing to make it more reliable, that we’re actually testing the auditory processing and not the lack of focus. Or make things more engaging, so more interactive for, for the children and things like that. If they have that type of disorder. The reason why I got into it is I did a lot of my doctoral research in ADHD. I have two children that have ADHD, and their father had it as well.

So, it became kind of an area of interest for me, and like I said, with my kids, Similar to a lot of my patients. We’ve done everything. We went to the psychiatrist; we went to the psychologist. They were receiving every service under the sun. I would pay a lot, a lot of money for various specialists for reading and things like that.

Not realizing that a lot of their inability to actually grasp information was their difficulty with decoding. So actually, breaking down the information and allowing their brain to process it. And I made a lot of mistakes with my older one who I first identified, and then my, my youngest one who I knew early on had it, I was able to do all of the, the same, obviously the same types of therapies, but working with auditory processing from the beginning, and he was able to really overcome the disorder at a much faster pace when he was younger. And his reading skills and writing skills and language learning skills are at a much higher level than even for his own age range. And that’s because we worked on it early on. It is difficult sometimes to make that distinction, but oftentimes, they’re going through everything and there’s still this disconnect between what is being said and what the brain is understanding.

And the rehab with APD really helps them to focus and really work on their reading and language, development skills in a very intentional way.

[00:15:15] Dr. Lilach Saperstein: I want to ask you if you can give us a little more information on decoding is, and what it looks like when someone’s having issues with decoding, whether that’s in reading or in their auditory processing.

[00:15:27] Dr. Ruth Reisman: Yes. So, in terms of decoding, what that means, is it’s really breaking down, speech information or language information to the individual sounds or the individual phonemes.

The reason why we work on that is because a lot of individuals with auditory processing challenges or decoding, concern often will mix up words or mix up letters and sounds, and that will show up in a number of ways.

 Building those pathways within the brain to understand that when you hear the sound /d/ or “D”, that you know that that is the letter D and that that pathway gets reinforced throughout the whole auditory system. And the reason why we work on that, it almost seems elementary sometimes when we’re doing that, that we’re working on the ABCs from a very basic standpoint, but a lot of the times we work on that because when the speech information is degraded, either due to background noise or due to fast, rapid speech, an individual who has auditory processing disorders will not be able to differentiate between various sounds or various speech information. And so, what ends up happening is they’ll mistake one word for another and the whole comprehension of what’s being said is very much off or impaired, which leads them to have this, seemingly have a hearing loss even though their hearing is normal.

So that’s why decoding is, is the bulk of what we do to really reinforce the pathways of all of the speech and language sounds so that this way, once it reaches the level of the brain, it’s, well organized, and then it gets integrated properly so that comprehension is not impaired for the patient.

[00:17:21] Dr. Lilach Saperstein: Think people don’t realize how so many of the sounds are so similar from an acoustic perspective. They sound so alike. Like the letter S and the letter s h and like the ends of words that we, we tend to swallow the end of the word and it’s not as loud or clear if the word ended in a ED or a T, so then that makes a lot of sense that you go down to that base level of the input.

And then, this is an example I often give to people about differentiating things- back to our Venn diagram. Is it ADHD? Is it auditory processing? Is it something else? I talk a lot about interrupting. That you might have three different people who the complaint that’s coming through is that they interrupt a lot, that they’re not holding conversation appropriately.

So, for one kid it might be because they have an impulsivity issue and it’s part of the ADHD part that, they can’t control themselves or hold themselves back once they have something to say, they’re going to say it. But for someone else, it would be the same behavior, but it might be because they don’t want to forget what they’re going to say.

They’re trying to hold onto it. And that’s, it’s more of an internal, anxiety that they won’t remember what the question was or what their answer. And that’s more, I think on the auditory processing side and then a third kid. Well, that might be cultural because there are in some cultures that over- talking and you know, there is less of this quiet, formal reciprocity, back and forth and it’s more like, you know, that might be not even disordered at all if we look at their cultural background.

So that’s something I always like to bring in, that everything we’re looking at is so multifactorial, like who you are, where you came from, what your life is like. And if there’s issues, are these issues that we want to address and can address for this part of your life, you know,

[00:19:10] Dr. Ruth Reisman: Yeah.

I would add one more characteristic to that, and it’s similar with individuals that have hearing loss, that they interrupt because they want to dominate the conversation so that no one knows they have a hearing loss or an auditory processing issue. So that’s another, yeah, I, I usually find that more, more the most common reason why individuals try to dominate the conversation.

[00:19:33] Dr. Lilach Saperstein: Right, because then they don’t need to be hearing and decoding what everyone else is saying cuz they’re the ones speaking. That makes a lot of sense.

[00:19:40] Dr. Ruth Reisman: Exactly Right.

[00:19:42] Dr. Lilach Saperstein: So then once you do have the diagnosis, what is the treatment plan like? You mentioned your son getting very targeted and specific therapy, so what were some of those?

[00:19:53] Dr. Ruth Reisman: Yeah, once we have the evaluation and we really identify what categories the individual is having challenges with, then we come up with a therapy plan, and therapy usually lasts, as long as there’s no major compounding factors or like I say, things like very traumatic brain injuries and things like that, often times the therapy would last about 12 to 14 weeks and many times at that point, the patient has overcome a lot of their challenges with the auditory processing.

 Each week we work towards building upon the skillset that we worked on the previous week. So, if, like we said it is a decoding issue, then we will work on a certain few sound that the patient, let’s say, often will, mix up or confuse. And then the following week we’ll review those sounds and then work on new sounds.

And then the week after that we’ll go back and revisit all of the sounds and then work on new sounds and, and learn on integrating all of that information and build up each week until they have a full repertoire of the phonemes and the various, linguistic sounds.

In things like tolerance, fading memory or difficulty hearing in background noise, we’ll work on desensitizing the patient to hearing in background noise. So, we’ll work at their level, what level can they tolerate in terms of background noise and at each, appointment or each therapy session we’ll make it more challenging and more and more aggressive to a degree to really tax the system.

Challenge it, to expand itself and, and work towards the next level of understanding speech in a more challenging environment. Things like organization will work on small sequences or a few steps. And once the patient can master working on a, very limited amount of, directions or steps, then we’ll increase that and, and see how much we can task the system until we can get them sequencing multiple, directions and things like.

So, it tends to be very elementary in the beginning, gets more challenging as time goes on. I think the key is to really keep the patient engaged, make it fun, and really do the maintenance from appointment to appointment.

[00:22:20] Dr. Lilach Saperstein: And does therapy also do remotely or in person?

[00:22:24] Dr. Ruth Reisman: There’s two models. You can either do it in person or you can do it remotely. We’ve found great ways to really work on the therapy remotely for adults and children, to really make it very engaging and, intentional in what we want to do in terms of improving their skillsets. And there’s been a lot of success with that, even in the virtual realm.

[00:22:46] Dr. Lilach Saperstein: something that so many people, have all the different barriers to healthcare that we always talk about, and if we can do this, it seems also like maybe a short time that someone might be surprised by just, you know, 3 to four months and then, all my auditory processing issues will be finished.

How might you respond to?

[00:23:06] Dr. Ruth Reisman: I know it. And sometimes I’ll tell patients that it almost seems like unrealistic, right? For the most part, a lot of these patients have been dealing with these challenges their whole life. But we’ll typically counsel them and say, if we are very intentional in targeting the challenges that you have. We’re working towards building the skillset and they do what they need to do on their part, in terms of their maintenance activities, their homeworks that we give them in between sessions. So, it’s like a workout program to a degree, or a nutritional program. Right.

They’ll monitor themselves or we’ll give them tools to know how to eat healthy, know how to exercise. but the work comes from both sides. We’ll give them the information and work with them during the therapy sessions. But the patient also has to do their part in terms of the maintenance.

and I think what ends up happening is that once they see that they’re able to function so much better, with the therapy that they’re unintentionally doing their own therapy in real world settings and we’ll always reevaluate the patient six months after therapy. This way we’ve given it time to actually use their skills in their real life, in their day-to-day setting, and then see how much we were able to actually decrease their concerns, or their areas of weaknesses with auditory processing.

And like we said, the majority of patients will do really well and for the most part will almost or nearly, get rid of all of their challenges. But from time to time, there’s always still some residual because again, it is, in some ways, especially if there’s a global comorbid disorder, there’s always going to be potentially some residual weakness.

But we can, we can work towards giving additional exercises and things like that to, to make it more seamless in their day-to-day.

[00:24:59] Dr. Lilach Saperstein: So, would you say that people after, let’s say, after that six-month appointment, where you can see a big difference from when they first came in to how they’re doing now, that, that they drop the diagnosis, the label, is that something that happens?

[00:25:15] Dr. Ruth Reisman: So. I guess it really depends on their needs. So, for children in the classroom setting, we definitely want to do the therapy, but also still want to give them any support that they would continue to need. Once we do the. reevaluation, we’ll see if there’s any residual effects and if they still need, some maintenance or continued ongoing support.

For adults. Oftentimes we can kind of say that, it’s been rehabilitated, but just to be mindful of the fact that they still have those symptoms. If they still have those symptoms, they should work towards, using the strategies that we discussed in therapy or work on, some of the maintenance activities.

I don’t think it can always fully go away. In some ways we are working with an impaired system just like hearing loss. So yes, we’re giving a lot of tools. We’re doing a lot of therapy, we’re giving a lot of support, and they can be functioning in a normal, setting in those environments where they find that they’re having challenges, but we probably have to always keep this awareness that it was there or that it is there so that we can so that they can get accommodations or support, when needed.

[00:26:24] Dr. Lilach Saperstein: That sounds amazing and I, I just hope that’s something that a lot of people can take away from this conversation is that there’s hope and there’s help and there’s resources. And that so many people feel that they’re dealing with these challenges and that’s it. This is going to be like this forever.

you also don’t want to give false promise, but you do want to say, let’s get specifically your case. Go see someone who knows what’s going on, and even if you have one or two or 10 other professionals tell you something about what’s going on, that doesn’t mean that there isn’t, that, you know, another person who might say, I know exactly what’s going on and help you out.

Cause I think you and I have both seen that many times where people say, wow, “I wish I would’ve met you five years ago. Where were you when this or that was going on?” And that’s, - yeah, you’re nodding along, so

[00:27:11] Dr. Ruth Reisman: Yeah, exactly. Exactly. Exactly. Right. and the beauty of it also is that it’s, although it’s extremely helpful, it’s also extremely non-invasive, so it’s like, it could only help. that’s the real takeaway aways. Like it could really only help. We’re not doing anything in any way to harm the system. We’re not giving any, invasive technologies or anything like that.

A patient today was telling me about, you know, shock therapy for tinnitus, and in my mind, why would we start there if there are other non-invasive things that we could try before we, we get to that point, you know?

So that’s the beauty of this. And, and it’s just, so in some ways when there’s a diagnosis and we identify the weaknesses, there’s treatment options. Like you said, there’s help, there’s a way to get help. And it’s so non-invasive and it’s just so helpful in any way. Like you said, any improvement is really a win.

 I don’t think anyone should hesitate to try if they’re having those challenges.

[00:28:12] Dr. Lilach Saperstein: I’d like to ask you a little about what’s the overlap with this kind of treatment, protocols and the work that you do with people who get cochlear implants in the auditory and aural rehab that they go through.

[00:28:25] Dr. Ruth Reisman: Yeah, the amazing thing is that we do have wonderful technology to help individuals with hearing loss, like hearing aids, middle ear implants, cochlear implants. Those are for individuals that really have, significant hearing loss or have a lot of challenges with their speech understanding and maybe weren’t successful with hearing aids and things like that.

But what patients really need to learn and understand is that yes, the technology is amazing and the options that patients have to treat their hearing loss is so expansive as compared to what it was, let’s say, when my mother was suffering with hearing loss back in the day. But we, like I had said earlier, we have to understand that we’re always still working with an impaired system and that the aural rehabilitation or the therapy, the hearing therapy that we do for individuals with auditory processing holds true for individuals who also get hearing aids or get cochlear implants because in many, many ways their brain is learning how to hear again, right?

They haven’t been hearing for so long because of their hearing loss. Or the technology is such a different way of hearing than the brain is used to. So, let’s say with the cochlear implant, we’re used to hearing acoustic sound, and now with the implant, it’s electrical sound. So, it really takes a lot for the brain to relearn, to hear again, and to make the patient as successful as they can be.

So yes, the technology is the first step, but I’m a huge proponent of aural rehabilitation, really taking the patient to that extra mile and making them as close to a normal functioning hearing individual as we can with all of the tools that are available to us as an audiologist.

[00:30:10] Dr. Lilach Saperstein: That is phenomenal. I think a big part of our job is educating the public.

On the fact that these devices and these technologies are not glasses and they’re not a light switch. There’s a lot that goes into it. A lot of patients they’ll say like, what’s the rehab time? And it’s can really vary. For many people, it could be a year, a few months, it could be many years, depends on

what their progress is and so many other factors, like you said, how long they had hearing loss for before, did they hear before as in did they lose their hearing or were they born with hearing loss? These are all factors that, that go into it. But again, it’s really important to stress that, there is a possibility of training and working out the system.

It’s something that people can be aware of that exists.

[00:31:00] Dr. Ruth Reisman: I would agree. And yes, like you said, with hearing impairment, the therapy will be individual. It could be an ongoing thing that they’re always going to be learning new ways to compensate for the challenge. But where there’s a will, there’s a way.

I think if, if we’re willing to all work together and work hard, that they can be extremely successful.

[00:31:19] Dr. Lilach Saperstein: Mm-hmm. I hear this thing that’s thrown out a lot that people say, oh, you have to listen to audiobooks, or you have to listen to music and follow the lyrics. And even though those are really good strategies, we certainly use them.

I wonder if you have specific thoughts on that just being given out as a blanket recommendation.

[00:31:40] Dr. Ruth Reisman: Yeah. I think oftentimes it’s our nature as audiologists to want to help and to want to give solutions to patients, especially when they’ve gone through something as challenging or traumatic as a cochlear implant.

audiology is so expansive and people don’t realize that. So much that there are various areas of specialty, right? So, I think definitely giving patients some sort of a tool is great, but also giving them information of what else is out there to be able to help them. So, it’s a great starting point, and like you said, integrating that into their, let’s say, everyday life, using an audiobook or listening to music and, and listening to the lyrics is great.

But we have to also remember that that is in some ways, a complex speech input especially music, right? That’s a complex auditory input that we’re giving to the patient where it may not be the case that their brain is at that level to actually break all of that information down. So, if we think about music, right, there’s the melody overlaid with the words.

So, the brain really has to filter out the melody and the words, and, and by doing that without actually breaking things down into much more smaller packets may take a longer time for the patient to actually adapt or overcome. So, I think using it as one strategy is great, but I think we also have to be more intentional in what we’re offering the patient in order to make them successful.

Yeah.

[00:33:12] Dr. Lilach Saperstein: I would like to ask you about what is your favorite part of this?

[00:33:16] Dr. Ruth Reisman: Yeah, I, I think my favorite part of auditory processing is actually working with all the different types of patients. What I find so interesting and every time I meet a new patient, I’m always shocked by, it’s not one mold of patients that really fit into this category. There are younger individuals, there’s children, there’s older individuals. It just spans across the age range, across gender, across different cultures, different backgrounds different races. It’s just so, so interesting and fascinating to me. And everyone has a story, which I always enjoy hearing about and learning about and being able to be part of their story and their journey is a very rewarding aspect to what we do as audiologists.

[00:34:06] Dr. Lilach Saperstein: That’s really very special and good for people to know that their audiologists actually cares about them and what’s going on in their life.

And I think that’s true for most of us in this profession.

[00:34:17] Dr. Ruth Reisman: Oh, for sure, for sure. Sometimes that’s part of the most interesting aspect of what we do, is really learning about, people’s lives and, getting to know them, especially doing the therapy. We’re going to build a relationship whether you like it or not, so we’re going to get to know each other well.

[00:34:30] Dr. Lilach Saperstein: So is there anything else you’d like our listeners to know about you and how they can find you and work with you, where you’re located, et c.

[00:34:38] Dr. Ruth Reisman: Sure, of course. So, I’m actually located in New York, as we discussed. So, I live in New York. I service because we’re virtual, like we service the whole entire state.

So, anyone in New York is able to reach out. We have a website called Urban Hearing, so urbanhearing.com. And on there, there’s ways for professionals to connect with us, for patients to connect with us, for family members. And there’s a lot of information on there about auditory processing and what we do.

But we also service actually Florida and we are essentially the only audiologist on Bermuda offering this service too. So, we can support patients in all of those areas. And feel free to touch base and reach out. And if you’re not sure if scheduling an appointment or evaluation is the next step, just send us a message or send us an email and we’re happy to respond right away and, and answer all your questions.

Perfect.

[00:35:32] Dr. Lilach Saperstein: Thank you so much. We’ll absolutely have all your information in the show notes and a full transcript of today’s conversation as well on the All About Audiology podcast. So, thank you so much to Dr. Ruth Reisman for all the information and this fun conversation about how our brains do so much with everything that we hear.

[00:35:51] Dr. Ruth Reisman: Thank you so much for the opportunity and I’m always happy to connect with anyone, including the students that are listening, patients, professionals. If anyone has any questions, I’m always happy to, to, to connect and, and discuss further.

[00:36:05] Dr. Lilach Saperstein: Awesome. Thank you so much.

[00:36:07] Dr. Ruth Reisman: Thank you.

The post All About ADHD & APD Auditory Processing Disorder: Tools, Evaluation, and Treatment - Episode 94 with Dr. Ruth Resiman appeared first on All About Audiology.

Read the full transcript here

On today’s episode of The All About Audiology Podcast Dr. Lilach Saperstein share with Xinke Liu. Xinke is from China and was diagnosed with hearing loss at 15 years old. Currently, she is the  co-founder of Orka. The two speak about Xinke’s experiences with hearing aids, Cochlear Implants, multilingualism and multiculturalism. Despite her family not being that involved in her hearing loss experience, Xinke has become her biggest self advocate and this quality of hers shines throughout the conversation.

This week on the All About Audiology podcast:  

• 4:30 - Certain unwanted behaviors that we see in children who are Deaf of HoH are attributed to their hearing loss.

• 6:22 - Cultural norms can be a barrier for one to recognize that they might have hearing loss.

• 7:10 - Turning captions on during a TV show or movie is an example of Universal Design.

• 13:22 - Just because someone receives a hearing aid or CI, doesn’t mean that it’s doing its job correctly or that it’s fit properly.

• 32:00 - It is helpful to talk about your own or a loved one’s hearing loss journey so that all the feelings do not get bubbled up inside.

• 43:00 - It is crucial to seek treatment as soon as possible

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

Related Episodes:

Podcast episode about Universal Design

Mentioned in this episode:

Patreon

Orka

Podcast episode about Universal Design

The All About Audilogy Facebook Group

All About Audiology on Tiktok

All About Audiology on Instagram

https://drlilach.teachable.com/p/all-about-you-52

Transcript:

Dr. Lilach Saperstein:

Welcome back to The All About Audiology podcast. I’m your host, Dr. Lilach Saperstein, and this is a very interesting and special episode - All About You: an interview with Xinke Liu, who is going to talk about her journey with hearing aids, Cochlear Implants, and also about multilingualism, multiculturalism, moving around the world. And I’m really excited to share this story with you and have Xinke share her  experiences. Many parents and people who have a Deaf or HoH child in their life are in this All About Audiology community, and everyone should feel that their story is represented in some way. So lots and lots of different people have shared their story on the podcast, and I invite you to do the same. If you’re interested in being a guest - DM me on Instagram and be in touch so that our community can continue to grow and help each other and support one another.

So welcome Xinke. How are you?

Xinke Liu:

I’m good. Thank you. I am thrilled to be here. So happy to be here. I mean, I wish there was a program like All About Audiology when I first knew I had hearing loss when I was 15. So with all this information, my hearing journey would have been a lot different.

I would not have wasted like 7 years before finding the right solution for me. And the transcript - I mean, I’m sure you’re pulling a lot of effort, proofreading and correcting the transcripts and for us with hearing loss it’s always such a delight to see a podcast, with accurate transcripts. So thank you, Dr. Lilach.

LS:

Oh, thanks for mentioning that! Because it always is so important to be accessible! I’m trying to do something for a particular community of people. Of course it would be my goal to do that. And yet it’s a big, like you said, effort and expense. So I’m grateful to the supporters of the podcast. If anyone wants to join our Patreon, this is a good time to mention that your support really helps for the production of the show. But I know that there’s always more to do like captioning on Instagram stories and making sure [there is] accessible, alternate text. There’s always more things I’m learning but thanks for mentioning that. So I’d love to hear a little bit about your background if you could start. Where were you born? And how did you grow up?

XL:

So my name is Xinke Liu. I was born in China. I had hearing loss when I was 15 years old. Now, I’m a bilateral cochlear implant user, but before that I used hearing aids for about 7 years. And now I’m the co-founder of Orka. Orka is a hearing aid company. We design hearing aids, [and] general purpose chips.

LS:

So before the age of 15. Did you have any problems with your hearing? Did anyone in the family have any suspicions? What was it like growing up?

XL:

No one ever suspected that. I think it’s kind of absurd because when I had my first hearing test at age 15, the results came out. And it was profoundly severe on one side, and severe on the other side, so at that point I should have went straight with cochlear implants, but I didn’t. And I think me and my family just kind of ignored the signs, because I wasn’t struggling in school. I wasn’t struggling making friends or anything. I thought I was just having attention deficiency problem. I remember that I used to talk to my friends, and when they answer me I started drifting away, and then I would remind myself, Okay, don’t do this. Now pay attention. So I would ask my friends to repeat them[selves], and I think it works like when they repeat them when focus[ing], I seem to understand them better. But now, looking back, I know I was just compensating for my late hearing loss with lip reading.

LS:

Wow! That sounds so effortful, so exhausting. And I love for parents to listen to this and know that a lot of the behaviors that we see in children who are Deaf of HoH - they’re attributed to the hearing loss, but we may not know that. So we see kids who are rude or ignoring you, not paying attention, and all of those behaviors we’re putting our interpretation of it. But really it could be they didn’t have access to the sound; they’re not ignoring or being rude or not paying attention if they’re not hearing that, and that’s so hard for you to have dealt with. 

You were hard on yourself, or you’re not paying attention. And all the things that you didn’t even know you were missing. And then to say: Oh, it was a hearing the whole time. That’s so frustrating! 

XL:

Yeah, and I think the thing with lip reading is that maybe because I was a kid [at that time]. So, lip reading wasn’t that exhausting for me. I mean, if you want me to do lip reading now, I would definitely say no, but I was a kid. I didn’t know what I was not hearing, and I guess it’s also related to The Chinese language. It’s because we have different accents, different dialects here in China. So the TV shows always have captioning on. And the movies always come with captions. So I never had trouble understanding these, because we had different dialects. People already have problems understanding each other if they’re not speaking Mandarin. So I didn’t suspect it was my problem. I just thought, oh, it’s noisy! Oh, that’s what happens to everyone else.

Well, looking back, I know I was struggling, but then I didn’t feel like I was struggling, or it was frustrating at all. I was just thinking, why [do] people have radio - like I can’t really hear that much from radio. I don’t think that’s an efficient way of communicating information. But now, looking back, I know. Oh, yeah, because I wasn’t hearing what they were saying.

LS:

Yeah. So it was more normal for you. You didn’t realize that everyone else wasn’t experiencing that as well

XL:

Yeah, right? I just didn’t know. I thought everybody was just studying by themselves. So I didn’t ask. I didn’t know you were supposed to, you know, listen [to] what the teachers have to say in class

LS:

Ah yeah, you mentioned the word over compensating before - that you had so many other ways to do the things you were expected to do. So you studied from the book, and you saw the captions. That’s very, very interesting.

XL:

Yeah.

LS:

We did an episode a while back on something called Universal Design, and how when there’s more accessibility, it doesn’t only help people who are disabled in a specific way. But it actually helps everybody. Like you’re mentioning that there’s always captioning on TV because of the language. That is not only helping people with hearing loss, but it’s actually probably helpful to everybody from the language aspect. And also, you know, from not having to put so much effort into listening to the TV. So I’m gonna link that episode about how when we use accessibility tools, if they’re universal, that benefits most people - even people without the specific quote on quote issue that it could be helping. 

XL:

Yeah, actually I took a class in universal universal design before, when I was doing my master’s program. I took a class called Disability Studies, and the professor told us about this universal design. And we visited a campus that was specializing in universal design in Berkeley, California. So I think it’s great. And I also kind of envy the students of the Covid era, because when they are doing the online courses they always have the captions on.

LS:

Yeah, in a lot of ways there were a lot of advances in going online. I’ve heard people also say the fact that when you’re in a class of 20 people, let’s say, and everyone is in the screen equally, then that’s more helpful than physically being in a room and having to look around and catch all the different conversations. So there’s definitely some pros, even with a lot of the challenges that came with being online. So that’s good that you noticed that.

I’d like to ask you a little bit more about what happened after you got the hearing aids. And did you start to notice the change in all the things you had been missing? So what was that experience like for you?

XL:

Actually, no. At first I had this pair of hearing aids. And I think because the awareness for audiology in China was quite low then, and the audiologists [are] not that advanced or it’s a small sector. And my first hearing aid wasn’t powerful at all for me, I mean the audiologist - I’m not even sure she’s a licensed audiologist. Now [that] I think about it, I think she’s just a salesperson. So she prescribed this hearing aid for my left ear, which is my worst ear. So the hearing aid didn’t work at all. And I thought: Oh, that’s what all hearing aids are like. So I stopped using them after a while because it wasn’t working for me. But then I remember when I paid a visit to a doctor in Beijing, the capital city of China. And the doctor mentioned something about CI, but I didn’t know anything about CI then. So I remember coming out of his office, and there was this salesperson in the hallway. And he was telling me about CI. But I thought, this is so scary. No way I’m gonna have surgery because the salesperson told me about it in the hallway. So it’s not really how I pictured this would go. And then that’s just the story of it. And at that time I was still in China. But after a while I went to the United States for college, and it was at that time I realized: oh, my hearing ability was so bad because I could not lip read in [a] foreign language.

LS:

Hmm.

XL: 

That was really hard for me. So it was only then that I realized, I can’t really hear much.

LS:

Wow! Very, very interesting to hear that the environment changes. The language spoken around you changes, and you were in college, too, which in itself is a challenging environment - studying and classes. And that’s when the difficulties arise for you. And also I’m curious to hear when that doctor mentioned cochlear implants. Did you look online? Did you know anyone who had it like, were you interested in researching more? Or did you feel like that’s not for me, because it felt salesy?

XL:

I feel shame because I’m not that active in my hearing journey at first. I was quite passive, because I was back in China then. I thought I didn’t have that much problem. So when the doctor mentioned something about CI, I just thought: okay, it’s not for me. Not just yet. I mean, he didn’t push me to do it. So I thought, okay, maybe it’s not that urgent to get the treatment. Somehow my parents didn’t take it seriously. I didn’t take it seriously.

LS:

I just want to make sure that there’s no shame coming from me. Everybody’s journey is their own. And it seems like if the challenges that are usually associated with hearing loss were not a big detriment in your life, then it makes sense that you weren’t totally motivated to dive in to figure out what to do about it if it wasn’t such a big part of your world. I think this is actually a really important lesson for people to hear. That sometimes we have these goals that we put on other people. As professionals, we do this (what we think people should do, or how involved they should be). And for some people that’s not what their goals are, what they need. So I respect that a lot. And I definitely didn’t mean to introduce any shame or hope that you don’t have shame on what you did for yourself when you needed to at the time.

XL:

Yeah, right? I used to think: I get by. So, because my first experience with hearing aids wasn’t great. So I just thought: Yeah, I’ll just rely on lip reading. And I thought I can still get by.

LS:

Yeah. And the piece that the hearing aids weren’t powerful enough [and] weren’t fit properly.

That’s something that we also want to take into account. Just because someone gets the technology doesn’t mean that it’s doing what it’s meant to do or [that it’s] fit properly for the person. So, yeah, definitely making sure you go to an audiologist that’s trained, that knows what they’re doing and helping, if that’s accessible, that’s an important point, too.

XL:

Right? That’s why I really appreciate the hand holding my second audiologist gave me. So after I started college in The States. As I said, I realized I wasn’t really understanding what the professors were saying in every class. So I went downtown to find this audiologist. Her name is Dr. Cohen. And Dr. Cohen, if you are listening to this, thank you so much. Dr. Cohen is an audiologist in upstate New York, and she helped me find the right hearing aids for me. And she also helped me set up all these accessories like the FM System and the [unclear] so the professor could talk through the microphone, and I could hear the professor better in my hearing aids through a streamer.

And then later, I don’t remember what time but at some point, she suggested that hearing aids may not be powerful enough for me. So she wanted me to have cochlear implant surgery. She contacted this surgeon in Manhattan, in Columbia University, and she booked an appointment for me. She even told me about how my student insurance will cover the surgery.

LS:

Wow.

XL:

Yeah. Then I did everything she told me to do, and then magic happened. The first time the audiologist activated my CI, I was like what?! After I left the audiologist office I took a taxi and then suddenly, I noticed the advertisements in the taxi that was playing, and I was thrilled. I started talking to the taxi driver about this magic thing that just happened. And I mean, if there was more information available when I first knew I had hearing loss, it would be a lot different. I only had my first CI surgery after college. So basically those 4 years, while I was sitting in the classroom, as mostly, you know, just drawing something in my notebook and pretending I’m listening.

LS:

Hmm! Wow! So that was a big change for you, and you had both cochlear implants at the same surgery. You did bilateral at the same time?

XL:

No, I have my first one in 2015. And then while I went to grad school in California. I had my second surgery and my student insurance also covered that one. So I’m quite lucky.

LS:

Yeah, that’s wonderful. I’m curious to hear if there was ever a point in your journey, after getting the cochlear implants, that you felt we regret, or maybe grief about the years that you didn’t have it, or if you were more open and understanding that that’s the way life goes. You know, I’m wondering if you had a journey around that, or if your personality is more accepting of what’s going on . 

XL:

Well, I have to say, even though my personality is just more like accepting everything that happens to me. I did regret that I waited so long before having my first CI surgery, because 

I was struggling then in college. I was a bit depressed. I didn’t know by then, but I was certainly at school, and I thought I just didn’t like to go out . But that’s not true. That’s a fat lie I tell myself. So you know, when you can’t communicate with people and when you can’t make new friends,

I started telling myself some lies like [for example reading]: I like reading, I prefer it this way. This is how I like it. But that’s not true.

LS:

Hmm! So you are isolating yourself and saying: Oh, I’m an introvert. I like being on my own.

XL:

Yeah, exactly. So I was isolating myself and limiting myself to things I thought I could do.

LS:

Yeah, that’s really important. And I’ve worked with people through Zoom internationally. I have clients all over the world. And we do sessions around how the emotional part of their journey, the social part- how that’s impacted their relationships and their work. And something that happens very often maybe around the second or third session is that people can become very, very upset and sad that they hadn’t had the opportunity to talk about these things in the past or [say] I wish I had met you 6 years ago or I wish we had done this many years ago when I was struggling. I’ve heard that kinda sentences from a lot of people before. Because with clarity, once you’ve understood things, once you feel a little more comfortable with your own story - then there is a moment, usually right after the clarity that is grieving that you wish you would have known that sooner to have you and avoid so many struggles that could have been.  And I really think that’s an important step in everybody’s journey. That that’s valid, that you’re allowed to feel that way, no matter where that’s coming from. And at the same time to say: hey, I found it. Now I have it now, and I can move forward from here.

XL:

That’s why I want more people to know about audiology and know how technology can change our hearing journey and know what hearing aids or CI - what they can do to help us.

LS:

Yeah, amazing. So can you tell us a little bit about Orka and your work with this company you founded? Tell us about that.

XL:

Yeah, so, Orka is a hearing aid company, and in 2018, when I was doing my master’s program in California, my co-founder, Ben, found me. He approached me, and he wanted to talk about hearing aids and my experiences with hearing loss and CI. I mean no one ever wanted to talk about these things with me before. And at that time, Ben was an engineer at Apple, so he purchased this pair of hearing aids for his grandmother, and he realized how expensive these things are, and how difficult they are to use. So after a while his grandmother just stopped using them. So he thought, it shouldn’t be like this. We could design something that’s more user- friendly and more affordable. And he told me about his plan to start a company. So at that moment I thought, wow, this is fate calling. So I said I should join you, and he said: yes. That’s how we started with Orka. We have [unknown] in the United States, and here in Shanghai we have a team close to the manufacturing facility.

LS:

So you’re producing different kinds of hearing aids. How would people get them? Are they direct to the consumer? Or you work with audiology and dispensers?

XL:

Right now, we’re selling directly to consumers. But it’s not that we’re obsessed with selling exclusively to consumers by ourselves. It’s that we want to talk directly with the consumers. So we have their direct feedback. We would understand how they’re doing with the products. We want to make sure, like they are having the kind of customer service we want them to have.  We want to make sure they’re not just buying the product and [then] store them in the closet. That’s why we are selling directly to the customers now, because I understand how much the handholding process means for the users especially in the initial phase.

LS: 

Hmm! And how do they get programmed? The devices, right? Because the process of having a  hearing aid programmed appropriately has a lot of software and a lot of finetuning. So I’m curious - if someone gets a hearing aid, you know to their door, how do they then do all of those changes?

XL:

So our customers can get the hearing aids delivered to their door, but we have in-house audiologists who can program them over the air. So we can do this remotely.

LS:

Got it

XL:

We developed a [unknown] council. So audiologists can program the hearing aids for customers over there. It doesn’t have to happen in person.

LS:

Got it. Okay, so that’s really important to know, because I think there’s a difference between over the counter amplifiers and different things that there’s a lot of confusion around what devices are appropriate for different people’s hearing loss. So I would always recommend having audiology, guidance. So I’m glad to hear that you’re doing that remote fitting. That’s really really good, and also very accessible for people who can’t reach an audiologist for whatever reason.

XL:

I mean, total support of over the counter hearing aids. I think the brew is great, because that will welcome more players into the field and definitely accelerate the innovation in this field. But Orka isn’t going self-fit just yet, because from my own experience, I know how important the initial on board experiences are because it’s not like glasses. You can just put them on and have clarity to yourself. So at first our audiologists are there to tell the customers: well, you should start by using the hearings aids for like 4 hours a day, and then 6 hours a today, and then what to expect in the first months, what to expect in the second months, or in half a year, and how your family can be involved in this, because oftentimes we are not just dealing with the users. Oftentimes it’s wives and husbands - we have to get their family to understand about this as well. So yes, we’re not going self-fit yet. We don’t want them to just buy this product and just store them in the closet and never touch it again. We want to make sure they’re using them.

LS:

Yeah, that’s right, or fit them incorrectly, and maybe make them too loud to cause more damage or not loud enough so they’re not helpful. So very true, very good. I find the fact that you are involved now in a company that’s helping other HoH people to be so inspiring and so wonderful. I wonder if you have advice for any people who are listening or reading the transcripts of our podcast in our community, of what you expected your future to look like and what you are now seeing that is happening with your life.

XL:

I wouldn’t say this is advice, but this is a future I want to see - as I mentioned before, I was a passive user along this journey, I wasn’t doing much research. But now I think it shouldn’t be that hard for people to access all the knowledge, all the solutions to themselves, or a hearing aid purchase could also be a no-brainer in the future.

LS:

Hmm.

XL:

It’s like, if I want to buy a smartphone now, I wouldn’t have to do all of the research. I may just go to Apple and buy the most popular one. I kind of hope with hearing aids, with audiology, people would have this one touch point where they can have all the information they may need. They don’t have to push themselves to do anything or exhaust themselves in finding the right solution for them, or wait for 7 years, like I did. They could just have these to them right away. They wouldn’t have to do all the work or efforts, and just leave that to the professionals, to the hearing care industry.

LS:

I hear that. We talk a lot about advocacy on the show, and it is important to be an advocate. But I really like your vision that we wouldn’t need to do so much advocacy. We wouldn’t need to push so hard to get the things that would be helpful for ourselves and our kids. That’s really a beautiful thought. I’m gonna take that on.

XL:

Yeah. But it’s really what I want. I mean because, yeah, it’s definitely my personality, like, I don’t want to do some research. Just tell me which one to get. What should I do? I just don’t want to put any effort into it. I mean, I want it to be more like consumer electronics that I can just buy there and start using them. And there’s customer service along the side, so I wouldn’t have to put in all the effort.

LS:

Yeah. And of course, we have to just make one distinction for the difference for adults and children. And people who have complex medical contributions to their hearing loss definitely definitely need doctor guidance. I’m just gonna put that out there. But okay.

XL:

That was a vision that’s not possible now. But what we’re hoping to achieve in the future.

LS:

Yeah, and I think it goes back to what you said before, which is that there’s the option that there should be more options, that you can go the medical route, or you can also try something out first and see how it works for you in a more personal way. I’m curious if you can talk a little bit about English, because you speak more than one language, and your language skills are excellent. So I wonder if you can talk a little about how you learned English, and maybe even what language you prefer in your day to day life.

XL:

Chinese, definitely, because I live in China, and I can’t communicate with people in English here. But I think the one thing about English is that actually, I think I started learning English in primary school. So my hearing problem wasn’t that bad yet. So I learned some English by then. But after my hearing ability started deteriorating, I relied heavily on reading and relied heavily on the captions. Like when I was watching Friends, I would read the captions. I wasn’t really like learning English [used] in day to day life. I was relying mostly on the TV shows, movies with captions on. 

After I had my cochlear implant surgery, things definitely got easier and now because my CI has bluetooth connectivity, I’m listening to audiobooks all the time. I mean sometimes when I’m having dinner with my dad, I would just play audio books, and I could listen to them while, you know, smiling at my dad, But listening to audiobooks definitely helped me not just with my English but also with my Chinese. Because I was speaking Chinese with a strange accent before. It’s not like I’m from a certain area of China. But like I was just speaking it in a different way. I remember I used to get a taxi. And the taxi driver would ask me: are you a foreigner? I would say: no, I’m not, and they were skeptical because they think that you sound different. And now, looking back, I know. Oh, that’s because I had hearing problems. So my Chinese sounds a little bit different than other people do. But after I have my CI, the audiobooks and podcasting in Chinese and in English, they all helped me to have my speaking skills back. 

LS:

Wow, yeah, I mean, that’s a very common thing - the deaf accents; that is not quite so different.

But people do tend to notice it. That’s pretty common. So interesting that you’re sort of doing your own rehabilitation program with listening to all this.

XL:

Yeah, because I’m an adult after I have my CI, I didn’t know there was a rehabilitation program. So I was just doing it myself. 

LS:

Wonderful.

XL:

But I remember at first I couldn’t hear the podcast like a 100% clear, so that I would just do it every day. And then gradually I noticed, wow! I get to understand everything in that. And that’s great. So I guess that’s how your brain works. You have to adapt to the language. I was just learning both languages again.

LS:

Hmm! Do you know any hearing loss in your family? Anyone else? Cousins or other people that have been affected by this? Or do you have any idea of the cause of your hearing loss?

XL:

Actually no, I’m only one. I know that’s strange. So I guess it’s because of some kind of, I don’t know, side effects or some sort of medicines that caused this in me. But I have no relatives who ever have hearing problems.

LS:

I’m only curious about that, because many people - they want to know the cause, and they want to know if it could be affecting other people and their family. And I’m curious if you ever went down the road to do genetic testing, or try and figure it out or if it’s not as interesting to you.

XL:

Yeah, I had a genetic test before but that didn’t show anything about the hearing loss problem. So I have no idea. I mean afterwards, I was also obsessed with the cause of hearing loss. My family was obsessed with that, but after a while you just kind of just drop it.

LS:

Yeah, that’s something we hear very commonly from parents, especially parents who want to have other children. And they want to understand where this came from. So what helped, do you think, to not be so occupied with that question?

XL:

I guess we were busy listening to audiobooks, doing your own rehabilitation program and just looking forward. Not looking backwards. Maybe that helps. And you know it’s the same with therapy sessions. I guess. I did have a lot of therapy sessions only after I had my CI surgery. Because only after the surgery, I realized what I was going through - like, how can I stop obsessing about the things that could or could not have been done? And that helps. Yeah, I mean, I’m not sure about other people. But therapy sessions definitely helped me.

LS:

Yes, we are big fans of counseling and getting the help you deserve, because when you go through something that’s so significant and affects all the parts of your life, your communication and your relationships and your work. That’s pretty significant, so getting help with that, I’m really impressed to hear you bring that up, and I hope that more people are encouraged to not have stigma around it. Especially when a lot of parents are so concerned with getting their children all of the services, and therapies that they need which is good but what about the parents? They should also have some help. Take your own journey in it seriously, as well.

XL:

Yeah, definitely. So I think the parents should not, you know, criticize themselves for whatever is happening to the child, because most of the time, it’s not their fault. It’s not like they want this to happen to the children intentionally, it just happened. Yeah. It’s just nature.

LS:

Can you talk about maybe your family’s reaction to getting a cochlear implant, especially [that] you were in a different country doing things as a student. How would that play out with your family?

XL:

My family they’re pretty cool about it. I mean, they did not take my hearing loss that seriously before, and they are not taking the CI thing seriously now. They never see me as the different child who needs extra care. They just thought I was doing good. I don’t know. There’s pros and cons to that attitude.

It’s pros is that I never felt that because of my problem, I couldn’t do anything. They never said, Oh, you have a hearing problem, you’re not supposed to go to the United States, and start in a different country. They just let me go. I mean, because I think if I were my parents, I would be worried, right? But they didn’t worry at all. So I guess that attitude was kind of liberating for me. And when I had my first surgery, my dad was there with me in Columbia University, and I remember this vividly - like he was supposed to be there for me, because the first night was kind of crucial. And I remember Thursday night my dad woke me up and he said: hey, Xinke, I’m gonna leave you here for a while because I have to charge my phone outside. And he just left me there, and he was playing with his phone outside there. That’s what my dad’s like. And when I had my second surgery, my mom and brother were there for me. And they were equally, how do I put it, careless? They just didn’t take it seriously. I guess maybe I was having the surgery for the second time. I was used to it, and so what they said was, they were there for me to take care of me but the truth was, they were there for thought: Okay, Xinke is doing okay. And they just went out for some tourism. I don’t know. That’s what it’s like. Yeah, just - I know they never take this seriously.

LS:

Interesting. Yeah, it always has 2 sides to every experience that you can hopefully feel supported.  But even when people are very, very supportive, sometimes that feels like hovering, and parents who are so obsessed with what’s happening makes that the whole relationship with their child is only about one issue. That’s also, you know, is too far in the other extreme. So it’s interesting to hear that you share an experience which I think maybe also culturally, might have an impact of how this was responded to. Also that you are older. You were an adult at the time, not a child.

LS:

So it’s very interesting, I think, for people to hear different versions of the quote on quote CI story, CI experience. And that every person in every family is gonna go through that in their own unique way.

XL:

Yeah. And I am not defending my family, but I guess it’s because they didn’t think this was a serious issue, and they didn’t think this is going to limit me in any way or affect me that much. So I wasn’t scared of hearing loss. I thought it’s just this thing that happened to me. So because they weren’t scared, so I wasn’t scared as as as well

LS:

Very interesting. Wow! Thank you so much for being so open and sharing your story. I think it helps a lot of people to hear many different versions of other people’s stories. What they can relate to. What’s the same, what’s different in their family [and] in their life.

So I’d like to ask you if you have any specific story or something you learned that you wish more people would know. And now’s your chance to tell a couple 1,000 people.

XL:

I think this thing about my story really is the attitude. Because when I tell people about my story, as I said, it’s kind of absurd. But sometimes it’s that absurdity and that careless that made me through the whole journey. I mean if I surrounded my whole life with hearing loss, I would not have gone to The United States for college. I would not have done what I did. But because I didn’t care about it that much. So that kind of [made me free] to do what I wanted to do.

LS: 

I think this comes to another question I’ve been thinking of. We also talk a lot on the podcast about identity and how people take on this banner for themselves, that they are Deaf or HoH, that they are a cochlear implant user, that that’s a big significant part of who they are. I’m, wondering if you identify with that? Or if you feel like, it’s one aspect of you, part of many, and not so much a big part of only your identity

XL:

Sometimes I play the cards of “CI” to my advantage. I remember there was one time I arrived at the airport super late, like 20 minutes before taking off. And so I just went straight there and told the security staff, I said, I am hearing disabled, and showed them my CI, and they didn’t know what to do. So they said: Oh, okay, go ahead. And yeah, I’m kind of naughty sometimes when playing that card. So that identity is sometimes there for me to have fun with.  

Like I enjoy reading everywhere, because wherever I go, if I want to be reading, or if I want to be sleeping, I just take my CI off. Then I have this quiet place all to myself. And maybe when you are sometimes having fun with the fact that I can sleep everywhere on the airplane, in the train, when kids are crying, but you were just there so peacefully. That’s good, and that kind of, I don’t know, just plays with your brain sometimes. So you would take that identity as something for your own, and you have fun with it. I mean, I’m definitely having fun with my CI because I have 2 cats. They’re really naughty and really noisy at night. But that doesn’t bother me. So I have a really good relationship with them.

LS:

Yeah, I could see you focus on the benefits. But do you feel that if you meet other people who use CI or other people who are Deaf, that you have a certain kinship, you know, relationship to that immediately, or that’s not something that you would consider connecting all over?

XL:

Actually, we do. I mean in the past few years I started having more people with hearing loss and there is something that we share with each other, that we can’t talk to other people about.

LS:

So you do feel like, you know, there’s a certain connection you have with other people because you have this shared experience. And I feel like there’s this different thing that happens when we try to put our certain identity onto someone versus when they take that identity on for themselves - so that’s really where my questions are getting at.

XL:

Oh, I see what you may. I think actually maybe it’s a little bit different here in China. The awareness for hearing loss is super low actually. So when people know someone else with hearing loss, they’re often thrilled to find out you’re just like me.

XL:

And I know a lot of people are stressed about that, because they are not finding the right solution for them or their family is quite stressed. Or you know, we just have different personalities. So I often just go on and try to persuade them, like don’t be too stressed about this, like you can play with this identity, or try to sometimes try to share them out, because I know, some people might be concerned.

Like there’s this girl who said: If you go to school and you’re the fellow students notice you have hearing aids out, what do you say? And I said: Okay, I just say it’s a bluetooth earpiece or something. It’s my earbuds or something like that. Yeah, so I guess that’s why people really want to talk to other people about this because it’s an isolating experience. It’s lonely. We are lonely in this world, and especially with hearing aids. And particularly for people at my age like when we are young but we already have hearing loss. Of course we want to talk to each other.

LS:

Yeah, and how did it feel today to share your story and talk about it? Something you don’t do very often. How it go for you? How do you feel?

XL:

It’s pretty good. Actually, this is my first time I’m sharing my story in English. So, yeah, I never did a program on hearing loss before. I mean. You ask great questions.

LS:

Well, thank you. I’m very interested always to hear not only what happened but how you felt about it, how it affected you. So I’m really grateful that you shared all of that. And is there any last piece of advice that you would share with our audience, or anything else you want to tell us?

XL:

I would say, go seek treatment as soon as possible. Go find a solution earlier, and that’s really important, because if there is one thing I could change about my hearing journey, that would be to go have my CI surgery as soon as possible. This is not medical advice.

LS:

Sure, sure. But about this idea, that if you are experiencing any difficulty or trouble that you can look for ways to help yourself through that. And resources, professional. So that’s great advice. And I’m really grateful to all of our listeners for being part of the All About Audiology community.

Come, join the Facebook group. We have discussions over there. Follow me on Instagram, and on Tiktok - all about audiology podcasts. And just the last thing I’m gonna tell everybody about in case you haven’t heard: This year, we’re doing a mindfulness practice where you join our library of weekly audio meditations. They’re just 5 to 10 min very short, weekly ways to feel more grounded and more connected. So if you want to learn more about that, go to https://drlilach.teachable.com/p/all-about-you-52 and join us there. Thank you Xinke for being on the podcast today. Have a wonderful day.

XL:

Thank you.

The post All About You: Independently taking charge of your hearing loss - Episode 93 with Xinke Liu appeared first on All About Audiology.

Welcome to the first ever episode, part of the All About You 52 project brought to you by Dr. Lilach Saperstein from The All About Audiology Podcast. As of 2023, the All About You 52 is a brand new project that Dr. Lilach Saperstein is bringing to you. This project will bring you weekly audio based meditations. The meditation sessions will last for a few minutes. Each week, you can listen to it on your own time and during your own busy schedule each week. By signing up, you will receive a short audio clip of Dr. Lilach Saperstein teaching you a different exercise or going through a different type of visualization or meditation that you can do in a short amount of time. As an added bonus, you will also get journal prompts. To see if this program is a good fit for you, you can sign up for a 7 day trial. After that, you just have to pay $9 a month. Let Dr. Saperstein guide you in connecting to your inner self, slowing down, and gaining a set of tools that you can utilize when the stressors of life arise. 

This week on the All About Audiology podcast:  

• 0:10 - Introduction to the episode 

• 8:40 - Snippet from the kickoff call: Mindfulness is not clearing your head; it is focusing on the here and now 

• 14:40 - Take some time to relax, reflect, and be in the moment with this guided meditation

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

Mentioned in this episode:

Connect And Advocate group

All About Audiology Summit

Kickoff call

The All About Audiology Podcast

Transcript:

Dr. Lilach Saperstein:

Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. It is January, 5th 2023, when I’m recording this in not the most ideal audio conditions to be honest, I’m in a very reverberant room. And that is because I got rid of a bunch of furniture in this office space /guest room that I record out of. And so it does sound, not the best, but I felt that it’s very important for me to model the fact that “perfection is the enemy of the good” and I miss you guys and I want to talk to you.

 And I want to get a podcast episode out for you to tell you about the incredible, amazing community that we are coming together for this year in a project: All About You 52. All About You 52 is something I have really been percolating on for a long time. Well, let me explain it like this: a year and a half or so. We had our Connect And Advocate group with just a very small and intimate group of moms who all have Deaf or HoH children. And we came together three times a month, not exactly weekly, but very close and intense bond working together on how to advocate for your children, how to feel connected to them, and most importantly - how to connect to ourselves what we want and the kind of vision of our families. And in that Connect And Advocate group, some absolute magic was happening. And one of the things that I really, really enjoyed sharing with the group were these audio meditations and mindfulness exercises, being able to connect with your breath with your intention with your hopes, with your dreams, with your fears, with your anxieties, like just with whatever is and those sessions that we had sometimes the most powerful things that were coming out of our work together was because and thankfully due to those [meditation] tools.

And then on a personal note, I have also really benefited from mindfulness techniques and really, really tuning into myself in my surroundings. So, what I created with this All About You 52 is something that I wanted to take all those tools and make it wrapped up into very small bite size and accessible and convenient short audios week by week - 52 weeks of the year. With a small but simple and powerful technique to learn together and work on as a community. So in the All About You 52 group, which already has several members that are ready to go [and] it’s never too late because this project is ongoing throughout the year; jump in at any time no matter when you’re hearing this. If you join the community then you will have weekly new episodes that are exactly five to 10 minutes and it’s just a short audio clip of me teaching you a different exercise or going through a different type of visualization or meditation that you can do in a short amount of time. And journal prompts and discussion questions to really get you thinking about how you will make your week the best week. 

I know there’s a lot of energy around the New Year, and around new beginnings, around changes in seasons - where we really want to be our best selves and we want the most for our lives. But we also have to be realistic because as much as it’s exciting to open up a new notebook or you know, start a new project, it’s the accountability that we need to keep us consistent. So there’s something really magical and powerful that’s going to happen when we all come together on this. 

And now I want to ask you a question: If you were to say, hey, I really want to try this. I want to try to become more intentional about my thoughts. I want to feel more awareness and connection with my breath and my body and my thoughts and my feelings. But I don’t have a lot of time and I don’t have a lot of money. And I know that you are busy. You have so many priorities that you’re juggling. So it was really, super important for me to make this as accessible and open to our community as possible. 

And so in order to join us, first of all, you have a seven day free trial. So if you want to come in and check out all the audios that are already in there, including an entire bonus library of meditations that we’ve done in the past, well you can join and take a look around and see the audios and have an experience with it yourself. You know, see how you feel within our group and if it fits for you. If you don’t like it, you cancel and that’s totally fine. But you definitely have free access to see if it’s for you. And then if you decide to stay on with us, it’s just $9 a month. $9. I really wanted to make it as simple and easy for as many people as possible to be able to experience this. 

Now I’m not saying that I’m some like meditation teacher that knows something that you don’t know. I’ve just had quite a number of years of experience with many different practitioners. And I found that I really connect to the idea that it doesn’t have to be complicated. That there’s no right answer. But I can walk you through some of the very cool and interesting techniques that I have learnt and just put it together in a way that feels really natural and accessible. And doing it as a community for me is an absolute goal and the dream. But I really created this with you in mind. 

And I know I’ve spoken to many of you on Instagram, many of you have come to The Hear Retreats that we did in the last few years and participated in the All About Audiology Summit. All of these projects have been so important to me and to you guys. But I wanted to create something different this year - something from a different pace and from a different place in my heart coming from my healing journey. And I talked about more of that in the kickoff call that we had, which by the way you can still listen to you’ll have a link in the show notes - to see the call that we did where I shared my year end review. I went through all of my 2022 accomplishments. I will be happy to leave that name behind for that year. Moving onto 2023 baby. Throughout that call, I shared so much of the ups, the downs, the challenges, the wins and the joys of my year, really breaking down the places where mindfulness and meditation has played such a key role for me. 

In addition to many other things, right, in addition to therapy and support and my network and so many other things that have been beneficial to me, but you know that I’m going to keep it honest and real with you guys. It has not been easy. It’s not been an easy time and there have been quite a number of intense challenges and a lot of integration and processing and healing within the context of real life, within the context of having this beautiful business, and seeing my in-person clients, and raising my beautiful children, and maintaining the important relationships that are crucial for us. 

So that’s enough of me telling you why this is important to me. We will be absolutely getting back to audiology related topics on the podcast very soon. We’ve got some really cool guests lined up this year. But I really, really want to invite you to join us to All About You 52. There’s links in the show notes. And if you’re on my mailing list, you have gotten some emails from me about it. 

For a lot of us we tend to put ourselves at the bottom of the list of priorities and expenses and things that we need to do and take care of and that is totally natural because for many of us that is a huge part of our role. We are managing our families, and advocating for our children, and doing all the incredible things that you are doing - IEP meetings, and audiology appointments. and all the other appointments that you’re going to. Plus the house and your own job and career and aspirations and relationships. Like there is so much to juggle. So I really wanted to make this easy, easy for you to slip into your week, a short five to seven minute audio that will really help you feel reconnected quickly. A community that keeps you accountable. And it’s going to be weekly. 52 audios and we will be on our way. All right. This is the introduction to All About You 52 and you can listen. I hope it was meaningful to you and please head over to the show notes to Instagram or Facebook or send me a message or anything else to find a link to join us. Without further ado, here it is:

And the goal of mindfulness. You know, sometimes people call it meditation, mindfulness. These are a little bit different. But the idea of mindfulness is really about being aware of how you are feeling, what you’re thinking, what’s going on in your body. And having attention like that you are not spaced out even in your own mind or dissociated like in another place like here and now at this point where your attention is another way of saying that is presence. I have been working on and practicing and have had a consistent practice of [mindfulness] over the last while. And I think the thing that people have a misconception on mindfulness is [that] it’s like clearing your head or not thinking or not having any thoughts. And I think that’s why a lot of people get like upset or scared about it. Because yeah, how could you do that? Like your mind is a constant worrying machine. And it’s not so much the goal at all to clear your head or not think but rather to be aware of what you’re thinking and what patterns are in your thinking, aware of what’s happening in your body at what time. And more, and more that I think is the exact definition of being connected to yourself - not trying to change anything about how you’re feeling but just being more aware of it. 

It’s also coming from so many different traditions around the world and prayer and like there’s so many different ways that that has come and has gotten a lot of attention in the last many years. Recent times. And there’s also tons of apps, there’s retreats. There’s teachers that are teaching this, so many YouTube videos, and just audios that you can get. 

But I have found that for myself and for many of the people I have worked with, who are busy mothers, who are advocates: we got places to be and things to do. A big part of making mindfulness work for me has been micro-dosing doing little bits throughout the day and week and month when it is helpful and appropriate. Rather than I’m going to sit here for six hours on a meditation cushion or on some retreat for a week, right like none of those things are in the cards, I think for most of us, but that doesn’t mean that these tools aren’t super, super valuable and really potent like with small dosages, small time can have a big impact. So, I’m introducing this project for this year, which is All About You 52. And it rhymes. 

And All About You has been a big part of the podcast ever since the beginning. Right, you sharing your story. The podcast has always been about how what’s happening around audiology is actually affecting you and your family and the people around you. People who share their stories: those are the all about you episodes. And so this project All About You 52 is a weekly mindfulness audio library that I will be publishing once a week on Thursdays. And also these journal prompts. And they’re very short. They’re between four and seven minutes - like I’m really trying to keep it around that five minute mark. I have the first five of them recorded for the month of January and the first week of February. Each month has a theme, and I really, really welcome you to our community. 

If this is something that you would like to do. It’s a very, exactly small and perfect addition to your week. So it’s not, you know, weekly calls [or] monthly calls or things that you need to invest a lot of time on; Zoom time and computer time. Especially now that everyone’s actually back in real life. It’s hard to do both right. Thank you for being here today watching the replay as well. And these are the first couple of meditations for January where I’m teaching different techniques just like we did the infinity at the beginning. These are different techniques and it’s not just the same following circle. They’re different because each one is its own way to connect with the breath and connect with yourself and this month and then in other months have it all planned out for six months ahead of time of different techniques and tools and visualizations that can come with you throughout your day. 

And when you join our All About You 52, you also get access to the entire [library] meditation of longer meditations that we have done previously. So there’s all different topics and lengths that you can get there. And so you have access to that entire library as soon as you join. And so you get the short audio. There’s a journal prompt. At first I was thinking of doing a Facebook community. I’m not sure if we’re going to keep the community inside of the teachable platform where these are hosted or actually do another Facebook group. Depends what you guys want. If you want a Facebook community, I can absolutely do that. And then we can post them to there as well. And I think that it would be awesome to have you join us. 

So this is it. This is what we’re working on this week and part of it is to keep me accountable and to keep me creating throughout the year and moving to continually find the tools and things that will help us; that will help all of us. And of course I’m sure there will be other webinars and other topics that are more audiology focused. But I really believe that this is the place where A) I shine and I feel really connected to this process, as you’ve heard from me sharing today. A lot of how this tool and mindfulness has helped me throughout this year. But also I think that it’s a huge part of what is missing for a lot of people on this journey - with the overwhelm, with the fear, with the confusion that happens. There’s a lot of stuff thrown at you but with just a little bit of a container for how to handle those things. I think this is going to be a huge and successful and helpful tool to you in this year.

So that is that. Seven day free trial, then it’s $9 a month. You get the audio meditations, the journal prompts and the whole meditation library, and I’ll see you soon.

Hello and welcome. This is All About You 52.  This is a meditation, visualization, breathing practice, that I am very, very honored to be sharing with you, to work with you. And this is really something that we’re building together accountability that is coming for all of us because the five minutes that we take at the beginning and middle of the week to breathe, reflect and really connect to ourselves can have such an impact on all the other things we’re doing. 

I’m Dr. Lilach Saperstein and we’re going to dive right in. Because we don’t waste time; we don’t have extra. The little bit of time you set aside is very honored. We want to honor that time. And we want to fill each and every second with our presence and our awareness. So on this, I’m going to introduce the All About You 52 project with our very first check in right here. 

And what I’m going to ask you to do is put your hand on your heart to take your hand, place it over your heart, on your chest and be aware. Just start to notice what that action feels like. 

What do you notice about the temperature of your fingers? 

Is it different than how your palm of your hand feels? Notice the warmth or cold. And notice if it changes now that you’re noticing it - not because you’re trying to change it. There’s no right or wrong answer to how you feel.

[exhales] And take a notice if just by the act of putting your hand on your heart and making contact with this area of your body - if that has changed your breathing at all. If you feel a stillness or a restlessness, whatever has come up. 

The point is to notice it. The practice is to notice it. 

Put your hand on your heart and take notice of what kind of breathing you’ve been having, or you’re having at this moment. And if it feels right to take in air and breathe in through your nose. 

And notice how that also makes your chest rise with the influx of air into your lungs. [exhales]  

There may be a lot of feelings or thoughts that are coming up and they’re all perfectly allowed. We don’t have to stop our thoughts. There’s nothing specific we’re supposed to be thinking. This is an exercise in awareness and in giving ourselves an opportunity to observe and look within and feel the sensations in our body. 

At any point in time, throughout the day or night, while you’re driving, while you’re online - you have the opportunity to take your own hand and place it on your heart. I found that in times of conflict, in times of overwhelm - when I’m feeling very activated, very agitated, yelling, screaming, something’s going on - If I can remember just this motion. [exhales] 

It can help you catch your breath. It can help you remember just this action, this anchor - your hand on your chest, your hand on your heart. 

And that is today’s moment. Five minutes in and I bless you for the rest of your day to go on and remember your connection to self and the things that are important to you.

Over the next few weeks we’re going to be talking about different techniques of breathing. And I didn’t even start with breathing because I really wanted us to start from that place of acceptance - that anyway that we’re breathing - anyway that we’re being right is good - in the present moment. But over the next three weeks throughout the month of January, we’re going to be discussing the techniques of circle breathing, technique of square breathing, and a technique of triangle breathing. So those will be the next three meditations. Thank you for joining me for this project: All About You 52. This is number one. Bye.

The post All About Mindfulness - Episode 92 appeared first on All About Audiology.

In a special edition of the All About Audiology podcast, Dr. Lilach Saperstein is excited to share the inside scoop about the All About Audiology Summit. The summit will feature 20 speakers and conversations that will help guide you along your journey. The Summit is taking place from September 19th till September 22nd. Tune in to learn where to purchase your FREE ticket and information about the guests. 

Guests who will be featured at the All About Audiology Summit, 

Please note that the following list is not in any specific order:

Abbi Perets

Dr. Angela Loucks Alexander

Dr. Michelle Hu

Dr. Yona Saperstein

Germaine Graham

Janna Cowper

Dr. Kathleen Wallace 

Kellina Powell 

Dr. Kelsey Kerkhove

Kimberly Sanzo 

Kris Daria 

Lola Brito 

Mallorie Evans 

Marcela Collier

Marlene Medina Nero

Natalia Popham

Rebbetzin Bat-Chen Grossman

Dr. Sarah Sparks 

Valli Gideons

For more resources and research visit:

All About Audiology Summit

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

And the Prodana pay-it-forward platform here: https://prodana.org/practioner/lilach-saperstein/audiology-counseling–dr–lilach-saperstein

Transcript

Lilach Saperstein:

Welcome back to the All About Audiology podcast. This is a special recording for you guys. This is Dr. Lilach Saperstein, and I am so honored to invite you to the All About Audiology Summit. After three years of running this amazing podcast and hearing so much from the amazing participation that we’ve had over different retreats, workshops, and The Support Group, The Connect and Advocate Group - all these different things that we’ve done as a community. I’ve learned from all of you and heard from so many of you how helpful it is to take some of those explanations, and discussions, and experiences with audiology on the go, or outside the podcast, or in a space and environment where you’re much more able, and comfortable, and receptive to having these things. Because in the clinic - when you’re in the audiology clinic - or you’re at the hearing test, you’re at the audiologist office, time in the clinic is precious and limited. And it can feel like there’s all this pressure, you have to do all the testing, and the fitting, and the mapping. And there’s this energy like you have to understand everything all at once [through] discussing these really big lifelong decisions. And they have to be made soon. But also there’s all these feelings that come up and all of these emotions that you don’t necessarily know that, that’s what’s happening. So you want to ask all your questions and gather all your information and resources. But it’s not always so easy to do that in the moment. And from the audiologist side it’s the same because audiologists are really doing everything, having your child on the focus as it should be during those appointments. But sometimes audiologist really wants to say ‘hey, how are you doing?’ with the parents and the family members who are there. Your journey is also happening the same time as your child’s of course. So I really believe that putting the parents experience at the center is number one. It’s my vision with the podcast and everything I’ve done. So I had the idea of making this mega summit event with 20 incredible speakers, so I cannot wait to invite you to the  All About Audiology Summit. The dates are September 19 to the 22nd. But even if you’re hearing this after that, we are going to have all the recordings available. So definitely check out https://allaboutaudiology.com/summit/ to sign up. If you come during the days of the summit, the videos and the recordings will be available for 24 hours free of charge. So I’m really really excited. And after that if anyone wants to purchase the entire bundle of all the recordings with their transcripts and special offers from our speakers that will be available as well. 

So I just want to run through the amazing speakers we have just so that you know who to come and see and to encourage you to come, and attend, or be a part of the summit in whatever way works for you. Okay, so we have different categories, right so definitely some audiologists talking about various topics, some speech language pathologists, and also Deaf and Hard of Hearing adults themselves. And also advocates, and parents, writers and coaches. Okay, so let’s dive it. Here’s what I gotta tell you. First of all, there’s Abbi Perets. Abbi Perets was on the podcast a while back talking about her son who has microtia, but also her entire family and their journey also with another child in the family who was sick with leukemia and all the different things. She’s been through a lot of different parts of the parenting journey with children with special needs, and as well as being a freelance writer and teaching others how to be freelance writers. So Abbi Perets is fabulous. We have a great conversation in the summit [called] Business Success As a Special Needs Mom. 

You definitely want to come to the talk with Dr. Angela Loucks Alexander, who you may know from her TED talk about Auditory Processing Disorder. We talked about how the future of audiology is in the brain. Okay, we really want to support our children’s needs and accommodations. 

So after that, I think you all know Dr. Michelle Hu. And she shares more about her personal journey and mission. She also has been on the podcast in the past. 

I also invited my husband. Dr. Yona Saperstein is a family physician. And we have quite a chat about what your doctor really thinks of you. [We also spoke about] How to Talk to your kids’ doctor and what doctors are really needing to know and what they’re interested in from that perspective. So that was kind of fun to do. You get to meet my hubby.

Germaine Graham, is an SLP and we talked a lot about how things are different at home versus at school. She’s got [her] deafinitely communicating Instagram account and doing the ABC series right now. So definitely check that out on Instagram with Germaine. And our presentation together was really, really interesting. Our conversation [was] on taking a deep breath and trying to do things in bite sized pieces. 

Janna Cowper, hard of hearing mama on Instagram. The talk was really about how her journey growing up [with] Hard of Hearing is very different from that of her children who are also Hard of Hearing and how it’s okay that they’re different. That was such a moving conversation we had, and I love Janna. She has also been on the podcast before so you can also hear more of her story there. 

Dr. Kathleen Wallace is an audiologist I went to graduate school with. and she presented on third party disability, which means like - well, you have to come to the talk to hear more about it - but it’s all about how if one person in the family has a disability, then actually it impacts the entire family and impacts siblings, parents, and friends and [how] everybody in that environment also has some elements of accessibility needs as being a family member to somebody with disabilities. So that was a really important presentation that she made for the summit. 

Do you remember Kalina Powell who came on the podcast a little while back? [who is also known as] DeafQueenBoss, who was also writing a book about her experiences growing up deaf, and she really gave a good conversation about [the time] when there was one person who advocated for her and who saw her for who she was. What an impact they had on her. 

Dr. Kelsey Kerkhove is a pediatric audiologist. You definitely want to come to our talk. It was kind of funny. It was almost like looking in a mirror. Because everything she was saying I was like, ‘oh, that’s what I believe.’ And then I would say something and she said ‘that’s what I believe’. What really matters is that your child is at the center of the family is the focus and all the audiology things that we’re trying to do are in service of a good, and happy, and healthy life for the family, not just so that they can hear at a certain level, and have access to sounds at certain dB’s. That was a great talk with Kelsey Kerkhove.

You definitely know that I’m a big fan of Kimberly Sanzo with Language First. And so she also provided an amazing presentation all about language over speech, the difference between speech and language, and how to ensure that Deaf kids can acquire language. I think the piece that really stuck out to me from her talk, I shared this on Instagram as well, was the difference between exposure and access. And really defining all these terms that we hear a lot. You may hear them from our audiologists or speech pathologists, online and,books. Once you start defining what do all these terms mean, what does it mean to communicate, what does it mean to develop language? So definitely, definitely Kimberly’s talk is so important to help us understand and navigate all these terms. And really, as a parent of a Deaf or Hard of Hearing child, when you come into the world of audiology, when someone in your life has hearing loss, you end up getting very educated on a lot of things, and learning and getting so much information. So I really hope this summit will be a part of that journey for you: of gathering information, resources, and tools. And then using that to make the best decisions for your family. 

I’ll keep going down the list of all the amazing speakers. Kris Daria is a mother to a young boy who is deaf, and uses cochlear implants, and has had a lot of different changes and turning points throughout her journey that we talked about and navigating all of that. Kris is also a part of the Connect and Advocate Group. And so she talks a bit about that as well in the conversation we had for the summit. 

Lola Brito is a bilingual speech language pathologist. She talked about what the home program is. [Meaning] what does it mean when a speech language pathologist, or any other early intervention specialist, comes to your home? [As well as] discussing all different questions [such as] What will that look like and what is the point of it? How does it help? So that was a really powerful and important presentation. Definitely don’t miss that one in the summit.

Mallorie Evans is an audiologist who talks about the bias and what’s missing or lacking in the way that we communicate about hearing loss to families. And we have had Mallorie on the podcast before. [It is] one of the most popular podcast episodes in fact. So yeah, we’ve talked more about that: about the audiology and language access in early intervention and how important those first few years are. So thanks to Mallorie for participating in the summit. 

Now on the parenting bit, I was so excited and lucky to get to work with Marcela Collier. Marcela is a parenting coach from High Impact club. And she and I talked about how we can boost your child’s confidence and how to make your relationship the focus. That was really great. And by the way: if any of you are on Tik Tok, also Instagram reels, Marcela makes really, really powerful videos that make you realize that kids are going through it. Kids are learning life. They’re learning how to exist in the world.  And we can help them to regulate their emotions, and we can help them know that they are safe even when they feel so overwhelmed. That’s the biggest lesson, and I love her videos. So I was so glad to have a chance to collaborate with Marcela.

Marlene Medina Nero, the trilingual bimodal SLP on Instagram is just so fabulous. We had the best talk. I felt so close to her approach as well because thinking about how the home language might be different than the majority language. So a child who maybe speaks Spanish at home in the United States or all over the world, there are many different languages that children aren’t exposed to, [or] have access or limited access to and how it affects the brain to have different language exposures in such a positive light. Like sign languages and spoken languages. We had a great talk about what it’s like to be a multilingual SLP, busting some of those myths about bilingualism.

Do you remember Natalia Popham? She was on the podcast way, way, way at the beginning. And Natalia shares about her experience having a reverse slope hearing loss and what it’s like now as an adult, who grew up with different levels of being Hard of Hearing, whether or not she identified with that at different times, and recently, Natalia has gotten a cochlear implant. So she shares a little about that experience. She’s also an incredible artist. So I love always talking to her about her art. 

Okay, three more to go because I told you this summit is jam packed. So I really hope you grab your ticket and you come and join us. So aside from letting you in and meeting my husband, I also have to tell you that my sister is in the summit. My dear oldest sister, her name is Rebbetzin Bat-Chen Grossman, and she’s a marriage coach. So we had to talk about how all of this experience may affect your marriage, or your partnerships, or other relationships in your life and your child’s life. [We spoke about] That you really have to also prioritize and make space for and understand that again, when someone in the family is going through something, it’s going to really have ripple effects on everything else. And she talks a lot about connection. Can you imagine, right? https://connectedforreal.com is her website and you know, we’re we’re very aligned about the goal of the relationship and the connection being always ,always a focus. So that was fun. You can see my sister. And some people say we look alike and some people say we sound exactly the same. So that’s fun. You can come and see if you agree. I’d love to hear your comments on that. 

You remember Dr. Sarah Sparks audiology outside the box with just the most beautiful infographics and resources on her website. Dr. Sarah Sparks is doing so much beautiful work for educating in a way that’s so, so easy to understand and accessible. So we talked more about her own journey identifying as a Deaf audiologist and what it’s like to help people also by knowing that she’s, you know, she is the audiologist but she’s also been in their shoes and is in their shoes as well. So that was a really interesting conversation. I always love talking to Dr. Sparks. And we also do have a podcast episode that we had done previously. 

And last but not least, this is just a random list by the way, not the order of the schedule or anything. But Valli Gideons, who is such an incredible author and mother of two. And she recently published her next book, which we talked more about. And what it’s like, you know, sharing the story of her experiences as the mom. Which of course is also sharing her children’s experience and we kind of talked a little on navigating telling a story when part of your story is part of other people’s story. I always love talking to Valli as well. 

So I have had all these amazing conversations, over the last month and a half, with all the participants here - the speakers. And now I cannot wait to present it to you. And I have to say that almost all of the presenting speakers also offer some kind of offer for you, download, or advice that you can also take with you, as well as some prizes that we’re going to be having. So please head on over to All About Audiology Summit to get your free ticket and share with any and everyone in your world. I cannot wait to see you. We’re gonna have our kickoff call on September 19. And I will see you then. 

Take care and thank you for being a listener of the All About Audiology podcast. Thank you for being in this world with me and creating the kind of conversations, and community, and connections that we really want to be seeing with each other. And also I will say that the  Connect and Advocate Group is continuing into the new year starting at the end of October. So if anyone is interested in learning more about that, we’ll definitely be talking about it, sending emails about it. So if you’re not on the email list, go ahead and sign up for the summit and that will add you to the list - so you’ll get all the updates on that. And of course, I love talking to you guys. So if you’re on Instagram, send me a DM anytime, on Facebook as well, and I happen to be on Tik Tok these days but that’s a whole other world. So it’s great, great, great being in community with you. Thank you so much. I’ll talk to you soon. This is Dr. Lilach Saperstein, and this is the All About Audiology podcast. Bye!

The post Gearing Up for the All About Audiology Summit appeared first on All About Audiology.

Read the full transcript here

In this episode, Dr. Saperstain speaks with Dr. Karen Muñoz. Dr. Muñoz is an audiologist of many years and department head and professor of communicative disorders and deaf education at Utah state university. Dr. Karen Muñoz specialized in the administrative, educational, and research fields of audiology after spending many years as a clinical practitioner. She also started the Hear to Learn  (Oir para aprender) program which is a website with many resources for parents of children who are deaf or hard of hearing.

This week on the All About Audiology podcast:

• 9:15 - Parents are the key to how intervention is going to go for their child. And what I would like parents to really embrace is how essential they are.

• 12:35 - Oftentimes audiologists want to focus on the technical stuff. We got a lot we do have to care about and we have to care about what’s happening with the parent and their thoughts and feelings that can interfere with what goes on every single day that they’re with a child

• 15:50 - The resources that bridge the hearing care team and the parents.

• 20:00 -  Even when parents get a “hearing aid care kit”  too often, they don’t use it, or don’t know what to do with it.

• 23:05 -  How parents can make informed decisions. 

• 27:10 - And I think as ethical professionals It’s about having those conversations about what are their underlying thoughts, feelings, and questions. That’s where we focus our efforts to be, that support for the families and helping them get what they need

• 29:30 - We are in a really key position to make sure they have the information that they need, we are not in the position to tell them what they have to do, but we’re there to help them have confidence!

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

And the Prodana pay-it-forward platform here: https://prodana.org/practioner/lilach-saperstein/audiology-counseling–dr–lilach-saperstein

Guest’s links:

Hear to Learn

Mentioned in this episode:

• H.E.A.R retreats
• Language first
• Peach questionnaire
• Little Ears questionnaire

Listen Next/Related Episodes

• Mallorie Evans

Transcript:

Dr. Lilach Saperstein:

Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein, and this is the show where we talk about audiology in ways that really actually matter to you. 

If you are a parent of a deaf or hard-of-hearing child or you’ve just come into the world of Audiology, welcome to the show! There is an entire library of 86 plus episodes on all different topics. So go ahead to allaboutaudiology.com, put whatever search term you are dealing with, a hearing test, hearing aids, cochlear implants, any particular kind of diagnosis that you want to look into, maybe we’ve done an episode on it. And also as well as educational topics, advocacy topics, so you have lots to look at in the library at allaboutaudiology.com with full transcripts and show notes for each of the episodes. So definitely make use of the search bar there. 

Also, before we jump into today’s episode, I want to thank you all so much for being listeners and supporters of the show. To become a supporter of the show and help with production costs and transcription costs and editing costs then you can become a patron at patreon.com/allaboutaudiology, and that really, really, really helps. Even a small contribution is so appreciated. 

And lastly, I would like to invite you to join the mailing list so you are kept up to date about the upcoming H.E.A.R retreats that we run every so often online, which is an incredible gathering of parents from around the world talking about the real-life aspects of raising deaf or hard of hearing child. What really comes along with that processing… our own emotions, our own journey around this, as well as processing and helping our kids becoming really powerful self-advocates as we learn to advocate alongside them. 

The support in their community is really beautiful. So to get updates on upcoming events, you can of course follow me on social media at @allaboutaudiologypodcast on Instagram, and on Facebook in our parenting Facebook group, as well as joining the mailing list which is a surefire way to hear about updates and new upcoming episodes. 

Okay, enough of that. I would love to introduce today’s guest, Dr. Karen Muñoz, is the department head and professor of Communicative Disorders and Deaf Education at Utah State University. She is an audiologist of many years, as well as a researcher and I really am so glad that we’ve connected, and that she is coming on the show to talk about the parent-centered and patient-centered approach, person-centered approach. I mean, we all know that there are a lot of terms in audiology, about hearing aids and the different parts of the ear and all the different testing that we do and all of our acronyms, ADRs and OEEs, and all the different things that can become really mumble jumbled and… what are we even talking about at the end of the day and beginning of the day, we have to be really focused on the people the actual child or patient family in front of us. And I really love that that is her focus because that is something that I’m so passionate about and I want to learn more about the researchers who are doing so much incredible work in this field. So without further ado, I present the conversation that I had with Dr. Karen Muñoz. And of course, there will be full show notes and links to everything we talked about at allaboutaudiology.com. Thanks for listening, here we go!

Welcome, Dr. Karen Muñoz! To the All About Audiology podcast. It’s so wonderful to have you here. And I would love to start by having you introduce yourself and tell our listeners who you are. 

Dr. Karen Muñoz:

Well, thank you for inviting me. It’s nice to be here with you and to meet you. I’m an audiologist. I work in Utah I’ve got a varied history. I started audiology as a clinical practitioner, many many years ago, and then transitioned more into teaching research and now administration, so I’m at Utah State University currently.

LS:

And it’s so interesting that you have that trajectory. We definitely have a lot of students listening to this show, communication disorder students from around the world, and lots of times they are looking at their options, “what my career is going to look like?” And I always encourage people that, even if you choose something, that doesn’t mean that’s your life forever. There’s so many options and opportunities. 

So you started clinical what made you interested in moving into research in academics?

KM:

That’s such a great question, and people ask me that a lot, you know, because it’s such a little bit of an unusual path. And, you know, I really enjoyed working in the clinic and as I worked… I worked clinically for about 20 years, and during that time, I ended up focusing more on pediatrics as I went along. But when I got my degree, it was a master’s degree, and then the AUD came along. So it’s honestly that, that prompted me to look at this because I thought “Well, should I go back and get my AUD or, you know, what, what do I want to do?” And at that point in time, somebody had suggested to me that I look at a research degree. So it wasn’t any grand plan that I ever had along the way. It was an opportunity that showed up and I happen to work at a university at the time Supervising graduate students, you know, in the clinic, so I worked with students for a long time, I loved working in the university and the department chair at that time, when he raised that opportunity, it wasn’t even something that had occurred to me. So I started to look into it and I thought “oh, this is a path that I wouldn’t have thought of”. And what appealed to me about it is that it opened up additional doors. I already knew I liked working clinically. I actually didn’t even have a plan to change what I was doing. I was just going to go back and get the degree and have it enhance, you know, like my clinical work. But it really changed things in a whole lot of ways for me, and that I could never have anticipated and I’ve loved every minute of it. But that’s what prompted me to do it.

LS:

Would you say that when there’s, I guess, a misconception that people who are in their “ivory tower”, and they’re in university that they’re not actually interacting with patients, but, would you say that that is accurate to your experience with research or…?

KM:

I would say that it’s not as accurate as people clinically, you know working in so many different settings, think that it is. I have a lot of years working in the university in different capacities and it’s such a focus to say what’s clinically applicable, you know, what is it that’s best practice, clinically applicable, what you really should be going for. Not because it’s extra, but because it’s what comprehensive care looks like. I know that’s been a big part of everything I’ve been exposed to. So my experience is not an out-of-touch “ivory tower” (Laughs)

LS:

For sure, and I think maybe if anything, you probably think about the clinical care more than a clinician who also is taking on so much of administration and time schedules and cleaning the tips, you know, even they felt like… So of course there’s someone whose entire focus is thinking about creating the evidence-based practice that isn’t practiced. Let’s call it a symbiotic relationship. (Laughs)

KM:

You know, just thinking about evidence-based practice is such a great, like, foundation for all the different things that we do. And so I do have the fun now of being able to look at my research through that lens. So I think a lot of the clinical work that I did really has fed my interest, and my focus, and the things that I do as research, in a really meaningful way for me. And so I’ve just had a lot of fun with how that has kind of just grown and evolved over time. I couldn’t have planned it, let me put it that way, but it’s been very fun. (Laughs)

LS:

So I wanted to switch gears a little bit into speaking directly to our parents who are listening, parents of children who either get diagnosed with hearing loss or didn’t pass the newborn hearing screening. That’s a lot of people in that part of the stage. That’s when they start the Googling and come to the podcast, and other parents who are further along and have sort of a lot of information and are now navigating advocacy and education placements and communication questions and they’re sort of in that tornado. (Laughs) And then, so I think the parents at different stages, would wonder what kind of information you as a researcher wish they could know, just like, “please, everyone should know this”, this is your chance. (Laughs) Just speak to, let’s say, 5000 or so, people who listen to this. (Laughs)

KM:

Well, the thing that I really wish they would know, is that they are such an important part of the process. Like they are the key piece of the intervention and, you know, just kind of to qualify it. I work primarily with parents of young kids, so. you know, like birth to, say, early school age, maybe kindergarten, first grade. So my focus is very much on that parent that is just key to how intervention is going to go for their child. They’re with them every day. They know what works best for them. They know what’s not working. They are essential. And what I would like parents to really embrace is that, how essential they are. That they have important things to share with their audiologist or anyone on their hearing care team that they have insights, observations, needs that matter. I think sometimes as audiologists we overfocus, not that we should under focus this (Laughs), but we tend to focus mostly on what’s happening with the child. And we think that “of course the parents are going to do what they need to do and it’s going to just all come together” and parents need help as well. You know, they’re learning new things. They’re doing things they never even knew existed before… the support that they need is greater than, I think, typically what audiologists realize. So I’d like parents to know that, ask for what they need. Speak up, ask questions, if you’re not getting what you need, get another opinion. I’d like them to feel that empowerment and that equal weight of that partnership to drive it as well. Because I think sometimes as a patient or a parent, we’re willing to accept what we’re told by the expert, and they are just as much the expert as we are. We can’t do it with either part of that partnership.

LS:

Everything that you just said made my chest a little warm and made my shoulders come down a bit (Laughs). I felt that in my body. This is my entire platform and what the all about audiology podcast is about and how I found you because of all the research that you’ve written about the importance of the parent involvement and family-centered approach, because that’s what I noticed clinically and working with families like we were speaking totally different languages on the audiology side and the parent’s side of both. Like well, how do I make sure that my child’s siblings don’t feel left out? Or how can they be part of the process? And people asking things like “does this mean that we can’t do certain family activities that we would have done or we do with other kids and can’t do with this child?” That’s not necessarily an audiology question, but it’s what’s on their mind. It’s what they’re coming with. You know, this hearing aid is making a terrible sound and they’re very focused on one issue that they’ve come in for it but behind that is why do we even need this? And are they really on board with doing this hearing aid intervention or… So all of those conversations is where my interest came in and what I’m doing so much with parents because that’s what I am so on board with. So thank you for saying that. That’s very validating for my work. But for our listeners, I really want everyone to take that, hear it again. You are so important.

KM:

One of the things that you said that I just kind of wanted to point out that matters so much is what are those underlying issues that they’re facing? What are they feeling? What are their emotions? What are those internal things that can get in the way of doing the intervention that they’re caring about, you know, they’re there because they want to help their child nobody’s going to want to help their child more than they do. But that doesn’t mean things can’t get in the way. And oftentimes audiologists want to focus on the technical stuff. Is the hearing aid program dry? Is the hearing stable? We need to check in, see if anything’s changed, what’s happening with the middle ear? Are they having an infection right now? We got a lot we do have to care about and we have to care about what’s happening with the parent and their thoughts and feelings that can interfere with what goes on every single day that they’re with a child. And if we’re not going to talk about it with them, who is? who else is going to talk about these things with the parent? They’re going to sit with it. They’re going to feel these things. They’re going to have those doubts, those fears, those feelings, whether or not we talk about it, but if we don’t talk about it, they’re going to have more power within their day-to-day life than if we do talk about it. Just that fact of letting it be part of the conversation is really therapeutic and can reduce the barriers that those kinds of things cause and so I think one of our challenges and things as an audiologist we should do is not be afraid to talk about how people feel and their emotions and the psychosocial aspect of it. And it’s okay to ask, it’s okay to go there. And yes, it is our role, because I think I hear that a lot. “That’s not really my role”. Parents don’t want me to do that. And everything I’ve learned does not support that. (Laughs)

LS:

Yeah. And also a big thing that I say often, also to our audiology colleagues listening, that if it seems like well, I can’t do that, I don’t have time and there’s just like the tension. There’s so much to do, that it’s also okay to say, “Hey, there’s audiology resources that are doing the counseling side of it outside of the clinical”, even though it would be awesome if it was always integrated. The work that I’m doing with parents is… I’m not their clinical audiologist at all, in fact, I’m probably in a different country, with so many of my international clients. But the things that we’re talking about is the parents journey, the parents questions, and that’s equally if not as more of…. I’m not going to quantify it, but it’s awesome, it’s important and it shouldn’t be neglected. So for the parents to hear sometimes your audiologist will do that, and sometimes you’ll get that elsewhere or maybe through mental health support, or maybe through school counseling, or wherever else, someone on your team or in your life can offer that support. And maybe we can integrate it more, like trying to come at it from all ends.

KM:

I think that’s exactly it. I think it can and probably should be more than one source. You know, parent-to-parent support is a big one that oftentimes parents don’t know how to get connected with other parents and I often hear about how they feel like they’re the only one or they’re so alone, you know, so some parents are awesomely connected. Some parents don’t even know there is a way to do that. So I think you’re right. This should be a lot of different approaches to be able to support the parents, not just one single one. 

LS:

Can you talk to us a little about “Hear to Learn”? 

KM:

Yes

LS:

We will definitely have the link in the show notes. Don’t forget!

KM:

Well, it’s interesting, because when I started down my research path, you know, I started exploring like, “well, what are professional practices for different things?” So I looked at infant diagnostic testing, I looked at hearing aids counseling, all of this. What are we, as professionals, doing? Then at the same time, I was looking at what are parents challenges? What are they struggling with? and what do they need? And so I was kind of looking at both sides of the coin to understand what’s what. And that led me to this place of needing resources that were really kind of bridging the hearing care team because it’s more than audiologists, it can be speech-language pathologists, deaf educators, others that don’t know as much maybe about the hearing aids that their patients are wearing, you know, but yet they’re doing intervention or intervention with them. And then there’s the parents learning all these things at home. So it kept coming back to me about a need for training and resources. And I can actually remember when I got the idea for the hear to learn resources, I was at a triple-A conference in, I think it was San Antonio actually, and saying “there are not enough resources for Spanish-speaking parents”. So I was just really keying in, on that there’s just not much there and it really fired me up to try to understand what was out there. So we did some literature reviews, and website reviews, and… there just was not much out there. So in 2017, we launched our website called hear to learn with the whole goal of it being resources that help parents learn how to act on the things that they’ve talked about with their audiologist or their early interventionist. So we have a lot of tutorials, like kind of how-to tutorials, learning tutorials, to help parents bridge that… “okay, I know about checking the hearing aid. I know I’m supposed to check the hearing aid. I don’t remember what to do with these tools they gave me”, that’s just one example. And then, they also… the children if they’re learning spoken language, they need to be integrating language throughout their day. They know they should be doing this, but “how do I act on it?” There’s a whole bunch of fun activities, you know, that they can download and do. So we got it started basically, in the thought of helping to bridge the parents, kind of empower them at home, for the things that they’re doing. And one other thing that was really driving me with the videos is, over time I’ve really noticed how we teach mothers pretty much exclusively, so these videos can also be this bridge for people that can’t come to the appointments and can’t hear it directly. I think it can take some weight off the mother and support her in working with other people too. So that was kind of the vision behind it.

LS:

Wow. You know one of the things I talk a lot about for parents to consider is that when your audiology is just showing you something, or how to put it in, take it out… pull out your phone, take a video, then send that video to everyone on the care team, send it to grandma, send it to the babysitter so that they know what this is. That’s not always feasible. So it’s an idea it can be helpful at some appointments. But I love the idea that it’s there. it’s so organized, the website is so user friendly, everything is there. And I also love that you are not only saying what to do, but why it’s important. We talked about that ” buy-in” getting the parent to like be in on the journey with you and know that the things you’re recommending are for a reason for benefit. Just because we feel like it. What’s the goal? What are we trying to get to? So I think all of that is really helpful to parents to know they have a website, literally. (Laughs)

KM:

And the idea that you raised, like, filming it in the appointment, I’ve heard that a lot and I think it’s an amazing idea. One of the things that’s hard though, I think, at the time of the appointment is: parents can often feel emotional or overwhelmed at those appointments. So they might not even think of it and then if the audiologist doesn’t even mention it or facilitate it, it can easily not happen and at the same time with how they’re feeling and an appointment is going to impact how much they remember. So you know, I really liked the idea of bridging even if you had more people there, I can’t tell you how many people I’ve talked to, that, you know, they get the care kit so that they can take care of their hearing aids. And then it’s like “yeah, I got one of those. I’m not sure where I put it”, “yeah, I have it but I don’t know what to do with it”, and you know that they were taught, you know, the chances of them not being taught I think would be really, really low. But I would say like 90% of the people in our studies when we’re looking at it, too often don’t use it, don’t know what to do with it. If they use it, they use some of it but they don’t know what everything is for. The frequency of checking the hearing aids is very rarely daily, you know, for young kids and we know that the hearing aids are gonna malfunction and I really don’t believe that it’s not because someone didn’t talk about it with them. I think it’s that speaks to how big of an ask some of this learning is to take it and integrate it.

LS:

I would like to recommend to our listeners on both sides of the desk, if you will, that something you can do is actually take a breath, a moment, a pause between informational counseling of what’s happening, what we’re doing, testing or whatever. And then do actually take that moment to say now I’m going to show you something that you will likely want to remember. Now’s a good time to take a video. If there’s someone else that came with you and they’re in the waiting room, bring them in this part and actually make an emotional delineation between parts of appointments. And I would also recommend taking like a little check-in break, taking a breath which takes, you know, 20 seconds, but it’s very meaningful like nervous system regulation too.

KM:

Yeah, I agree with you. I think the check-in part of that, like how are you feeling about this? Would this be a good time to have someone so in here or take a video of this? How are you feeling? you know. I think that checking in and making sure that you’re providing the things, kind of what they want and need, at the time they need it. 

I think one pitfall, sometimes, that we can fall into as audiologists, I know I did, you know, when I look back (laughs) at practice, is, you know, thinking I have to share all the information at the beginning right or at one time or in a certain way because I want them to have everything that they need to know. But when we do that we’re not taking into account how they’re taking it in, how they’re understanding, how they’re feeling, what’s most important to them, at that point in time, we’re kind of following our own agenda, inadvertently, without making what they need part of the agenda. So those are some things I’ve learned over time, about what does it even mean to have a shared agenda in the appointment and why does that matter?

LS:

That’s really helpful, I think. So yes, I want to also ask, if you talk also about the big question, like, “let’s just touch the elephant in the room” of audiology, that a lot of parents are questioning about sign language and communication modality educational placement. That whole side of the decision-making  You know, we’ve talked a lot of the device side

KM: 

Yes!

LS:

But these are big questions that parents come in with as well.

KM:

They do and so you know, a few steps back to like that diagnostic time, where the hearing loss has been identified and the parents are now facing a whole lot of things they weren’t expecting to face, They don’t understand what they don’t know. I think we would all agree we want parents to make informed decisions about the directions that they go and the things that they learn, and what they can take on. And the only way we can do that is by making sure that they do get information to make these decisions along the way. They may have reasons to change decisions as they go depending on how their child is progressing. So we really want strongly informed parents, and I know different states have different systems that support helping to educate parents. So I think it’s really important to know what parents are receiving so that you can help support what they get. So the right referrals happen at the beginning. We’re doing lots of referrals at the beginning. You know, when a hearing loss is identified, are they getting the referrals that are going to help them have all the education that they need about communication modalities, options, how do they want to communicate? what do they want to do? do they know how to connect with other parents? they’ve gone to the doctor… there’s a lot of referrals going on there. So I think it’s also important to know that that’s not a single conversation. And that’s kind of where some shared agenda can come in. Now, there are lots of different things that you’re going to be looking at, learning now, what’s most important to talk about today? you know, and knowing that you’re kind of coming back to it and we avoid that kind of temptation of the fire hose of information that we feel at that point in time because we want them to know everything some of it can get lost. It is important to know like, for our hear to learn website, because my area of expertise is with spoken language, It’s geared toward the parent that’s decided they want spoken language. So we had to put some boundaries around what we developed and what we do. And so that would be like, a parent’s decided they wanted to go there, here are resources that are strong about that. But we don’t provide things at the time of identification and decisions and all of that because I feel like that’s like a whole nother website of resources. (Laughs)

LS:

Right. 

KM:

But your question is really important. And I think as audiologists it’s important that we don’t shortchange that conversation with parents about the things that they want to know about, understand as they navigate it. Some parents are going to want Sign Language some parents aren’t, it isn’t about what’s right or wrong, good or bad, needed or not needed. It’s what that family needs and what they want, and helping them to access the best experts and best resources for what it is that they want that align with the goals that they have. That’s where we want to be with it.

LS:

And I think one of the issues that parents talk about a lot is getting so much conflicting information, and they don’t really know which person or which one of their various referrals is the one that knows it the best or… and that’s accurate, also a reflection of what is happening in the field.

KM:

I mean, what’s really, really unfortunate is, and we’ve had it in the field for decades now, you know, it’s a long history of conflict between, should somebody go down a road where they’re, you know, a bilingual-bicultural, and the main language is ASL and the family learns ASL, is it a spoken language, technology, cochlear implants… I think where, as a field, we need to go, it’s not this either or they aren’t good or bad, right or wrong. It’s what’s best. I mean, I love Hands and Voices has a saying something like “what’s right is what’s right for your family”, I’m not getting it exactly right, but that’s really truly where we want to be. If a family wants to learn ASL and make that the direction they go, we want them to get the best support that they possibly can. You know, we don’t want to be in the position of saying “no, but you really need this”, you know, we are all naturally going to have biases because we’re experts in what we do. But that doesn’t have to be that we’re trying to convince people to do things because of what we do. And I think as ethical professionals, we can walk that line, that that’s a very doable place to be. It’s about having those conversations about what are their underlying thoughts, feelings, and questions. Unfortunately, there are going to be times when people are given information to scare them or to coerce them. And it’s a very unfortunate place for families to be when that happens, and I’ve seen it over and over and over again. And we don’t want families to have that on top of what they’re already experiencing. But we do know that it will happen. So I think the thing we can control is our own communication. And that’s where we focus our efforts to be, that support for the families and helping them get what they need. And that they get solid evidence-based information as they’re working through their questions and thoughts on it.

LS:

I’m going to definitely link and point people to an episode with Mallory Evans, who’s an audiologist that focuses a lot on the implicit bias in audiology, towards auditory oral, that is the field, and how lacking the parent information is about the need for accessible visual language for, you know, the most appropriate or accessible thing for children who do not have access to auditory input would be visual language. But many parents don’t even ever get that perspective, because there’s no deaf adults on any of their teams in their early identification process. And so, just knowing that sometimes we say that a parent would have the information to make a choice, but do they actually have all the information? So that’s a really great conversation I recommend people listen to, and also I’m a big student of the “language first” from Kimberly Sanzo, who also does a lot of work on sign language as the accessible option for language learning and how so much of audiology and auditory-verbal and SLPs are focusing on spoken language, whereas that is one way of communicating of many.

KM: 

Yeah, I mean, I think that for any of us in anything that we’re facing in life, we want to have the full information that helps us make our decisions. But we don’t always know what those things are. If you’ve never encountered something like most of the parents that are having their baby identified with hearing loss, haven’t encountered this, haven’t thought about it. And so we are in a really key position to make sure they have the information that they need. We are not in the position to tell them what they have to do, to coerce them, to judge what’s important to them and their choices, but we’re there to help them have confidence basically, in those choices that they make and to make sure they get really good support for whatever those choices are. You’re going to have parents that are going to go in so many different directions. They may just want spoken language, they may just want sign language, they may want some combination of the two, but how do we monitor progress and where they’re going that’s meeting their goals? You know, it’s just an ongoing thing we talk about and look at and process that won’t be that you shared a pamphlet and all is good. These are deep hard conversations that they’re processing. And it’s something that I think occurs over time. So I do like getting back to your point of those check-ins with people. There are lots of ways we should check-in, you know, with where they are because just because we talked about something doesn’t mean we’re really done with that.

LS:

Totally. Everything is an ongoing conversation. And I really find that a big thing, at least online, in the Instagram community, there’s this term that people are using a lot of “The Inbetweeners” that they are maybe using technology for their auditory access as well as involved heavily also in a signed communication.

KM:

And what I think is really important, like, if I were a parent, you know, and I didn’t know what I don’t know, is like “what is it that I really have to care about for my child to be successful with spoken language?” right? What are those key things that shouldn’t be happening? And same thing, if I want my child to have really great literacy in sign language, in this direction, what is it that’s really important for me to know and do there? Because I think that’s where the success of that individual child can come out because I think we can be lulled inadvertently into, let’s just give everybody everything and this is the best case scenario. But if we’re losing those key things that make them be successful or support that success, I should say, in whatever modality it is, we haven’t done anyone any favors. So if you’ve got a child, yep, they’ve got their technology, whether it’s a hearing aid or an implant, but it’s not programmed appropriately. It’s not being used consistently. We haven’t given them audibility, and that’s an illusion that they have what they need for their success in an auditory environment. If we’re saying that we want to go ASL, but the parents or the key communicators in that child’s life are not signing at a sufficient level to support the literacy growth of that child, what are they not supporting in that literacy growth? What needs to happen for that to really do the outcome that they want? And so one thing I do think is really important is that we don’t lose that depth of expertise in both of those areas, to really support parents. I mean, I work in this tiny little sliver, you know, of intervention and it’s like, it’s so tiny, you’d think that I’d have been done with it years ago, but it’s about hearing aid use, you know, and management. And there’s so much work that parents need to be able to do for that child to have auditory access that supports spoken language development and it doesn’t just happen because we taught them gave them tools, told them what to do. It takes so much more, and so that just replicate that kind of work on the parents across all these different things. And that’s the work on the parents, you know.

LS:

I really like that approach and for people to be able to think of the question, not so much, which direction do we want to go, but what is required of us and our environment for that, to enable, to support, and reach that outcome?

KM:

Yeah, you know, we want those children to have access to absolutely every opportunity that they can and we all know that if we go years down the road and just to use auditory access as an example, and they haven’t had it, that’s going to have that cascading effect on their language development, which is going to impact how they do academically in school, and we don’t get those years back. And so it just really matters as we go along which whatever it is, we want them to, the children, to have the abilities and the access to everything that they can do well, and so sometimes, a parent can’t do everything, you know, that’s a tall order and that’s okay if they don’t. I think we don’t want parents to feel guilty about how they’re approaching this with their child. We just want them to be really good at what they do. (Laughs)

LS:

Can you talk a little bit about ling sounds? Have you done some work on that where… I tell you where this is coming from, Sometimes people say “well, my child responds and can discriminate between ling sounds, and therefore we’re in the clear, everything’s, you know, target reached”, but could it be that that is a bare minimum of audibility that we’re trying to get to, but really, there’s way more that we can be testing, or like, things that parents can be looking out for, to say, we’re in a good place.

KM:

So you know, that sort of going more into a little bit of the intervention stuff that isn’t as much of my expertise but there’s no way that I would think that was enough, and that I was there and I was good. There’s so much more comprehensively that we have to be checking and looking at about what a child is able to do with what they hear. And you know, one of the underutilized parts of audiology and pediatric audiology is validation. So if you think about, you know, just even the questionnaires parents can fill out at home like, you know, the ”Peach” or the “Little ears”, things like that, that helped them look at what’s happening with audition in everyday environments. One wish I would have is that that would be more integrated into audiology practice. A lot of pediatric audiologists are not including the validation piece of it. I think that we need multiple types of information to determine how a child’s doing auditorily, multiple…

LS:

Those are great resources I definitely recommend. We’ll link them and I want parents to take a look at those questionnaires because they asked very functional questions like Does your child turn to their name? or when there’s sounds around them, you know, what is their reaction to various kinds of sounds, close, far, speech, noise, all different things like that, to really get a sense of their behavior around sound as well.

KM:

Yeah, so complex, and there’s so much to look at that, we really need to look at so many angles, to have confidence and I wouldn’t be confident with just a single angle.

LS:

Right, and so let’s not say “oh, they can hear six distinct sounds, the end”(Laughs)…. the beginning. Okay, so this is so fun. I think we can keep talking forever. It’s really nice. You know, when you find… when I discovered your work and reached out to you to invite you to the podcast, I knew that parents would have good insight from your work and your approach like the clinical together with academic, focusing on their particular experience. So for parents to know that there are so many people out there thinking about you, really (Laughs), and your experience and how this goes for you from lots of different areas. So would you have some words of encouragement or advice to our listeners to hand off this episode?

KM:

Well, I think that, you know, there is just so much promise and so much opportunity. So for the students listening, there are great things that you can do, I would say pay attention to how to be a person-centered audiologist, person and family-centered, you will go far and you will help the people you’re working with so much more, if you broaden and look at things through that lens. And for the parents, your kids are going to do great, they have you you are there for them and you have a lot of resources that you can reach out to. And when you get farther down the road and you look back you’ll say “yeah, I wish I knew that they were gonna do so good”. You know, I was really worried, you’re gonna feel better as time goes on and just really partner with the professionals that you work with, they are there for you and you’re better together.

LS:

Awesome! Thank you so very much for your time and expertise. We’ll have all of the links to today’s conversation in the show notes as well as a full transcript. This is the All About Audiology podcast. Thank you for listening!

The post All About Finding The Resources That Best Fit Your Family - Episode 91 with Dr. Karen Muñoz appeared first on All About Audiology.

Read the full transcript here

Today Dr. Saperstein speaks with Jen Walker, mother to 7-year-old hard of hearing girl who was internationally adopted. The two discuss the desire to look for ways to create a supportive environment while seeing your whole child. Jen shares parallels with going through the international adoption process and when her daughter was identified as hard-of-hearing. Listen or read the transcript to hear Jen share how and where to look for resources for hard-of-hearing kids, the importance of letting your child have a life of their own, and always looking for ways to connect with them.

This week on the All About Audiology podcast:

• 7:20 - Dealing with international adoption and hearing loss process at the same time, and finding similar situations and difficulties in both process

• 12:00  - Importance of intersectional identities and not “tagging” kids so that they can grow up as individuals of their own

• 16:00 - First reaction after finding out about your kid’s hearing loss and the first steps to look for resources

• 20:10 - Finding the  Connect & Advocate program for the first time and getting involved

• 25:50 Advocating using the F-I-G Method to balance oversharing and practical advocating. 

• 29:30 - The Connect & Advocate program lets you connect with your child, share with people going through similar experiences, and receive educational and medical advise

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

And the Prodana pay-it-forward platform here: https://prodana.org/practioner/lilach-saperstein/audiology-counseling–dr–lilach-saperstein

Links for Jen’s pages:

@teamwalkergonegloball

@80sgirlhtx

https://teamwalkergoneglobal.wordpress.com

Mentioned in this episode:

• Deaf Utopia

Listen Next/Related Episodes

• Mallorie Evans
• Erin Miller

Transcript

Dr. Lilach Saperstein:

Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein, and this is the show that is all about you and your journey. 

A lot of the audiology journey and having a child who is deaf or hard of hearing revolves around questions and not knowing where to get the answers. So that is what this show is all about. It is, you know, giving you a lot of information, a lot of resources, conversations with lots of different people for you to then go and say: Does this apply to me? If yes, excellent, you learn something that can help you on your way. 

So, on today’s episode, I’m so excited to talk to one of my favorite people who is going to introduce herself in a moment, but I just have to say that every single time we hop on a call together, every time that we have communicated and work together, it always makes me so joyous, so I’m really excited to introduce you all, to Jen Walther, welcome, Jen.

Jen Walker:

Thank you, that’s something to live up to there, no pressure, right? [Laughs]

LS:

You know, there’s just something that happens in the universe, when two people feel like they have a lot of the same values, and also really align with: I know something that you are looking to know more about, and that is very good for both sides of that equation. [Laughs] Because it gives, you know, part of the journey for the all about audiology, the parenting coaching side of things that I’m doing, the Connect and advocate members group, you know, Jen was one of the first people to join that and really make what I’m doing valid. [Laughs] So that’s really important for my journalism, thank you for that. 

Anyway, listen, people want to know who you are, why are you on the show today? So please give us an introduction, a little background.

JW:

Yeah, sure.

Jen Walker, I live in Houston with my husband and my daughter, my daughter is hard of hearing or deaf hard of hearing. We kind of haven’t, I don’t know, aligned on the appropriate label, because she’s still only 7, so she’s just kind of growing into how she wants to be known as. 

So, in addition to her being deaf and hard of hearing, she was adopted internationally. So she came home to our house at about two and a half years old. And that was, yeah, five years ago. Wow. Time flies. [Laughs]

LS:

I think I have just one question on that, that people might wonder, did you have any idea or understanding of her hearing status or being hard of hearing before you met her? 

JW:

So we are, I think, fairly clueless parents, maybe. Because if you go through the international adoption process you get some information about this child that you’re going to bring into your house and to your family. So the information that we got, we got a medical file and some videos and pictures, and there are doctors in the US that specialize in international adoption files. And so you have like 48 hours to get a doctor to review that file and get back to you from when you have it to make that kind of “yes, we’re all in” decision. So her file, said that her hearing was normal. It had some other special needs listed. But one of the, I remember very clearly, one of the doctors that we talked to, I  actually talked to two, and one of them said, “Well, you know, with this need, sometimes, hearing loss can be an issue. So you should look out for that”. And I noticed on some of her videos that, you know, she doesn’t always respond to the people calling. And like I said, we’re a little bit clueless parents, so we were like, oh, yeah, okay, whatever, sounds her hearing is normal, let’s just… We kind of, almost, blew it off. So, no, we did not know when she came home that she heard differently than we do. And we did not know for probably about a good six months of her being home. And really it was, you know, three or four months, and we were with the pediatrician, and just kind of, you know, general overview updates all that and she was like, “Well, you know, she hasn’t really picked up that much speech since being home, you should maybe get her hearing evaluated, probably not a big deal”. 

Even in our like, audiology reports now, it says like “mom said, we don’t really think that she can’t hear”, and every time I read it, I just kind of cringe. Why were we not kind of up on this? So…

LS:

You also were doing something new. You were dealing with so much that, that wasn’t at all on your radar. So, hurray for the pediatrician, made that referral, and it’s okay that you weren’t concerned because that’s, you know, that’s when it’s like, the professionals are there for you hopefully.

JW:

Yeah. And, you know, I feel really fortunate because I know a lot of people have to push their doctors for those referrals, and we didn’t have to. Then we did have to wait to get in to see the audiologist. I think that I called in like March or so, and it was June, by the time we finally got the appointment. So, on one hand, also, we were like, well, we don’t really think it’s a problem so we won’t press for it either, we’ll just set it up and see what happens. 

But we’ve been, I would say, very, very fortunate to have professionals around us that have pushed for us and advocated for us early on. And that’s, you know, the pediatrician who said, “you should maybe get her hearing checked”, and then when we went to audiology and we did the first sound booth test. I mean, she was three at the time, not interested in a sound booth test, quite frankly right? Not knowing what to do, and at the same time, not being able to hear what was going on, we didn’t know that. So, you know, at the end of the test, the audiologist is like, “well, it’s kind of inconclusive, but we suspect there’s an issue. So we need to get an ABR done right away”. And they scheduled that very, very quickly. So I mean, once we finally got into the audiologist, everything went pretty rapid, actually. So like a week or two later ABR. And at the ABR, they said, “Yep, she needs hearing aids. Let’s do the earmolds”, right then. 

So, within a month really of our first appointment, I think we had the hearing aids and they were on her ears.

LS:

What was that like? Like, were you able to accept that? Understand what it meant? Or were you just sort of following where they were taking you? How were you feeling at that time?

JW:

It was very much a whirlwind of information, you know, drinking from a firehose is the [Lilach laughs] appropriate statement there, right? And, you know, in this age of social media, like the first thing you do is like, Facebook group and Instagram or whatever your kind of thing is. Find out, okay, what are the resources? And you know, there wasn’t much discussion in terms of like, language preference, sort of language path, or any of that, right communication pathways, it was very much like, okay, she has hearing loss, we’re going to order the hearing aids today kind of thing. And you’re gonna go from there, and you need to get into speech therapy. And, you know, there was never any, “oh, well, you should consider doing sign language, or you could consider like these other alternatives”. It was very much just like, “here’s your path, done!” I mean, the nice thing was that it was, “here’s your path, go down it fast, right? Don’t wait”. And things got set up quickly. But at the same time, there wasn’t a lot of reflection for “what’s the right thing for us?” maybe, just the best way to say that. 

LS:

Yeah, and I think that for, you know, telling me if I’m putting words in your mouth, but for your situation, specifically, you were already dealing with a lot of questions of identity formation and inclusion in the family on a much bigger scale in the adoption journey. And then to get this whole additional parallel journey with identity around deafness, or… 

Definitely that we’ve talked a lot on the podcast about the implicit bias in audiology, definitely, we’re going to link some episodes, especially the one with Mallorie Evans, who is an audiologist that talks a lot about how, you know, even the language we’re using by saying hearing loss, and the one option of “what we’re trying to accomplish as audiologists as a field, whereas what do people actually need?” There’s definitely a change, a difference there, which we’re trying to bridge the gap for, all the time. 

But, I’m curious at what point you did start to learn or cue into those bigger conversations when it came to Evie?

JW:

I think there are a lot of parallels between international adoption, or even domestic adoption that’s across races so transracial adoption, and in some ways, our hearing loss journey, right? Because what you’re dealing with is a culture outside of your own, whether it’s yourself and your child’s culture, racial culture, ethnic culture, or hearing and Deaf culture, right? which is its own culture. And I’m very, very thankful that there are resources involved today that probably didn’t exist 10, 20, 30 years ago. 

So we live in a big city, right? We live in Houston, the fourth largest city in the US. So there’s a lot of resources. And there’s a lot of things here, and, you know, very quickly, we found that we live right down the street from a school that is for kids with hearing loss. We didn’t know at the time that it was a listening-spoken language only. And we didn’t even know that that was a thing right? that there are implications to that. So our first steps were like, okay, she’s getting hearing aids, because that’s what they just told us, and we got to get her into the school. And so, to be honest, that school really did a lot for our family. And I know that there’s a big debate out there. And I understand why there are frustrations around listening-spoken language.

For our family, it was incredibly beneficial. And some of that was around getting language but some of that was just around that same aspect of “she needs to be around other people that are hard of hearing or that are deaf” right? And so in her classroom, it’s all kids with hearing aids and cochlear implants. And so she was like, this is normal. Fast forward, a few months, maybe even a year, you know what I did on the adoption side was I joined a lot of adoption groups and what you find on social media is, some are good, some are bad. I was in these adoption groups, and they do challenge or kind of perspective. So I joined some groups around deaf and hard of hearing and it was like, whoa! There’s a whole controversy here too, right? And in the “adoption worlds”, there’s lots of controversy around things, and the same goes in “the deaf” space. So it’s like, oh, this is challenging me, this is making me go beyond what’s easy, or what I was initially thinking, right? And so it was probably, to be honest, it was at least a year in or so, before I was like, okay, maybe we should think about learning sign language, right? Maybe we should think about these things. 

And then got further and further involved in that and did start learning sign language. And, you know, having my daughter learn sign language as well, and I see so many benefits, that it’s like, okay, you have to be willing to be challenged, to then kind of grow from that. But it’s tough, because there’s brutal, brutal people out there, right? And it’s like

LS:

And the other side of it is you want to be exposed to new ideas, and you want to hear the perspective from, quote on quote, “the other side”, or people who have a different path or different perspectives, because lots of times, they have a good point. And that’s why they’re loudly trying to tell people their side of things because they’re not being listened to outside of that. So you have to find in a peer-to-peer or some sort of, you know, back to Facebook groups, and I think that’s very valuable that you can then say, “what’s right for us? What should I try?” and then see if it works.

I definitely find and, you know, one of my favorite things in this podcast and in the work that we’re doing together is that it really does hit so many different parts of our journey of our identity of life as parents, in our relationships, in education… And always trying to find what that balance is that’s supportive of our needs, and also pushes us forward. It’s a complicated one.

JW:

Yeah! And I think it also goes back to “intersectioning”, the intersectionality of identity, right? So I just read this book, “Deaf Utopia”, have you read that? by Nyle DiMarco

LS:

Not yet, I heard of it. Yeah.

JW:

I just read it. And he talks about, you know, this intersection of his life in different ways. And, you know, we often label groups, and then think of them as a monolith. But they’re not, right? I mean, if you say Deaf culture, some Deaf people talk, some Deaf people sign, some deaf people have cochlear implants, some have hearing aids, some do none of those. 

So it’s the same as the adoption community, right? international adoptees, some of them do these things, some of them do other things, right? So you can get into the spot of, well, my persona or my child is this exact thing. And you see this a lot with different therapists, right? And I’ll come back to that. But really, they’re not. They’re like a multitude of different things, right? My daughter wasn’t born in America, but she’s an American. And yes, she’s hard of hearing, and she wears hearing aids, but she speaks and you know what else, she loves dinosaurs, and she loves owls, and she does all kinds of other things. And when we put too many labels on, we forget about that wide variety that really is a person. 

You know, I think that’s why it’s important that when you find the people on your team, sometimes you’re gonna have them that are just focused on one thing, right? So we had a therapist that was just focused on trauma, and in particular, adoption-related trauma. And you know, we have a speech therapist that, her main specialty is around children with hearing loss. And it’s good to have those specialists. But at the same time, if you’re a specialist in one thing, everything that you see in a child is related, right? If you’re a hammer, everything looks like a nail. Sometimes it’s not related. You know, we have some very, I think, special people on our team who have said, “Okay, yes, this is my specialty, but I think you should consider something totally different”. 

So we recently had an orofacial myologist, just consultation, speech therapy consultation, right? so about the muscles of the mouth. And that came through our hearing loss speech therapist, she said, “You know, I think you should have this done. And you should tell them, Yes, she is hard of hearing, she has hearing loss. But don’t even think about that. Do the evaluation as if that’s not an issue because we know that” basically, she was taking her own hammer out of the equation and saying, Okay, you need somebody that’s specialized in this and tell them not to consider the spectrum because we already know about that stuff. But what is it that’s special there? And we got really, really good feedback because of that, I think, and so when you can branch outside of those specific things, and that’s why as a parent, you know your child best, that’s important. That’s why I love the work that you do, because it’s important to be able to advocate across those different things. And your therapists, and your audiologist, your doctors, all those people are going to push back on you for, well, they need this because of their hearing loss, or they need this because of their trauma, or they need this because of their… whatever. There are other diagnoses. And sometimes you just have to say, ”Actually, I don’t think that’s related”. It seems like it’s related because that’s your focus. But I don’t think that’s related.

LS:

Yeah, yeah. And that’s where the parenting part of it comes in. Because lots of times parents will say, “We’re dealing with this issue, and this issue, and these behavioral things, and we’re really struggling with parenting this child”. And they’re possibly attributing all those challenges to their hearing loss, or any other, you know, diagnosis or thing that is on paper that’s known. And some of the times it’s totally something else.

JW:

But it’s interesting, though, because I think when you get that initial identification that your child is different, right? Whether it’s hearing loss, Hard of Hearing, deaf, or another need of some sort, right? When you get that initial identification that your child is a little different. She has different abilities, and she’s going to face different obstacles that you did. You kind of initially, I think, have this moment of like, oh my god, what am I going to do? Like fight or flight freeze kind of thing. There’s a lot of grief and stuff like that about, you know, you envision your kid’s life. But to be honest, I think it’s the best thing that probably happened to me, because it made me go, why am I putting so much pressure on my kid to behave a certain way, right? Because she is her own person. And I think that we sometimes forget that. And this was like a moment of, you know, somebody knocking me on my head going, “Hey, get rid of your view of how this person’s life is going to be and let them define their own life”. And I think it helps me to kind of release some of those, I don’t know, perfection ideals because it’s so easy to fall into the trap.

LS:

And not only will they grow fine, when we’re thinking of the future. They’re actually here now, and you’re here now. You don’t look at the kid and think of what are they going to do in 10 years? In 20 years? Well, we don’t have any clue about anything, the future or even tomorrow. So why don’t we really, like, come back to presence and come back to our connection with our child and connection to ourselves, then everything sort of looks very different. One of the most significant things one of my grad school professors told me is “You can get a B, you don’t have to get an A”. And of course, you know, well, the way you got into this graduate program is by being a perfectionist, “A” all the way. [Laughs] Putting a lot of pressure and a lot of perfection on academics. And then that was the first time in my life when I was like, you know, in my early 20s, “That they say you can calm down now, like, you’re here, okay, that’s awesome. But now, you can get a B”. And that was a huge mindset shift and I take that, you know, in lots of places… By the way, you can also get a “C”, and you’re still not failing, it’s okay to do things, in not the most ideal way. And tons of the perfectionism that we’re an adult is like, “If it’s not exactly right, then just don’t even do it”. And that’s… what a waste, because you could have done so much. 

JW:

And I think that’s really important. You know, this has been actually a big topic at our house recently, because there have been a lot of news reports and stuff about these kids that are super high achieving kids, right? valedictorian, and all these sports and stuff. And they’re committing suicide, or self-harm, because of a very minor mistake. And it’s like, you know, like a traffic ticket, or maybe something even less than that. They just feel too much pressure. And so, we are very intentional and cognizant about the fact that we’ve been told, well, so you have that space. And then we’ve been told by adult adoptees that they often felt pressure to be the perfect child in order to be accepted by their family, right? So we have both those things in our heads, and so we’re constantly, constantly telling our daughter, like, “It’s okay to make mistakes. Everybody makes a mistake, right? And it’s okay that, you know, you don’t get a perfect grade or whatever. You’re putting in the work, you’re doing your best, you’re doing great” kind of thing and really trying to build up that, not just self-esteem, but resilience, right? Because I mean, let’s be honest, the world is a pretty tough place sometimes. And it’s really tough if you have something that’s not typical or not normal, right? So sometimes kids are the worst. I mean, I often I’m like, “Please let all the kids be nice today”. And I have no sign that they’re not nice. But you know, I think as a parent, you have that feeling. And so recognizing that… not that your child can’t achieve things because I absolutely believe that my daughter can do anything that she really puts her mind to anything at all, but that the world is stacked against her in some ways, right? For a variety of reasons. So, making sure that she’s aware of that, but that she has this resilience in herself and in her community, and that it’s okay, it’s okay to make mistakes, and you’re going to make them and you’re going to make them again, and it’s not going to change our opinion of you.

LS:

That’s very valid. I would like to ask you if you wouldn’t mind, telling the listeners a little bit about where you were when you heard about the “H.E.A.R” retreat or “Connect & Advocate” program, and what you were thinking you needed more of?

JW:

Yeah, sure. So I think I heard about it from a different retreat, actually. So I live in Texas, and I am a big, big fan of the “Hands of Voices” group, I cannot speak highly enough of them, I really enjoy everything that they’ve put together, all the support that they give to parents and families. And so I had just kind of gotten involved with them, actually, and been through a couple of their events, and had some mentors in that group. And they had a retreat, I think it was called a “Pause” retreat or something. And it was for parents, and I believe you were a speaker there. 

LS:

Yes, I was. 

JW:

I’m remembering correctly, yay.[Lilach Laughs]  And then right after that was the “H.E.A.R” retreat, and so I made sure to go to that. And what really impressed me was the emphasis on connection. And, kind of trauma, right? So kind of healing and all of that.

Because our daughter came to our family through adoption, we have been in this space of trauma, right, and understanding trauma and what it does to your brain and what it does to your body and your kind of hold neurological process. And the counter to that trauma is connecting, right? and building that connection. And so it was a big part of our life, even before we found out about the hearing. And so then, you know, we got kind of heavy into the world of Deaf, Hard of Hearing, and listening-spoken language, and all that. And what I found was missing there was related to connection and trauma. And we would have to explain to like, teachers and stuff like, “Well, yeah, our daughter has those things because of this early childhood trauma”. And the more I thought about it, I was like, but you know, what else is a trauma, having a surgery, right on your skull, for an implant, or not being able to communicate with your caregivers and not feeling safe, right? And so really, at some level, all the kids in the school have some level of trauma, and not all of it’s related to being deaf, but there’s a component of that, right? And maybe they’ve had other traumas too in their lives. And so it was like, why don’t you know, or understand about this? Or why don’t you think about this? Why doesn’t this factor into what you do? And I’m kind of picking on the school because really, it’s across like professionals, but you know, it was like, Why isn’t this important to you guys? And you were the first one that I remember, at least, that kind of brought those two things together. And I was like, Finally, somebody. Yay. Somebody’s talking about this, and somebody is realizing that connection is so vital. And yes, you know, we have all this other stuff we have to do. But you’ve got to be connected with your kid and with your family. And so, you know, that’s what really struck me about the “H.E.A.R” retreat. I think the other thing was, it was a time when we were going through kind of the initial ARD, like the special ed evaluation process, right. So in other countries, I’m sure it’s called something else. But in the US, the ARD meetings for our IEP “Individual Education Plan” I think, you know, the first one we went through, it was like, they’re talking about our kid, and telling us all this information and telling us what they’re going to do. And we’re just sitting there nodding our head going, “Okay. Yep, yep. Okay. All right”. And we walked away, my husband and I were like, “-Do you understand what happened? -No, do you understand what happened? -No”. And we didn’t realize that we were active participants in that team, right, that they were looking for us for information. And they were looking for us to advocate for our daughter. And so, you know, coming off of some Texas skins and voices stuff around advocating, around the special ed process, and then, you know, stumbling across your program, which was like, let’s link-up connection and being deaf or being hard of hearing, it was like, “This is great”. And advocacy, right? And so, I don’t know, it was a time when I really needed some focused tools maybe, on how to frame everything in my brain [Laughs] in order to advocate best for my daughter in situations.

LS:

Yes. Awesome. I’m so glad we found each other because that is exactly what I felt was missing. And so much of what people were talking about was like, “Okay, well, we finally have a handle on this, and we realize what we’re doing here, but we’re still sort of firehose, we’re still there or like a lot of this is coming at us”. And we don’t really know if anyone who understands like, you know, there’s all these parents and coaches but they don’t understand what having a deaf or hard of hearing child is or a child who has devices that you need to care for, little tiny batteries and all the things that come with that, that’s a whole wrench [Laughs] in the daily routines, it’s not like a normal natural thing that you would know how to deal with, unless you actually walk through it with someone who knows what that’s about. And then from the audiology side, there’s not that much that you’re getting from your clinical audiologist, about parenting and advocating, because they have a lot to do on the clinical side and want to make sure that you’re well fitted and the testing and all those things. So I’m seeing you’re sort of missing it from here missing it from there, but what if we brought this together in a online forum that has much more time for those issues? So I’m really glad that that was what was able… where you found what you were hoping to get support on.

JW:

Yeah. And what I really liked about the “F-I-G” method is that I mean, we’ve had multiple discussions. So you know my point of view, right? I don’t want to overshare my daughter’s story, and my family’s story, because I’ve been told by people that I know very personally, and also people in the interwebs of the world, right? That you need to make sure that you kind of keep some privacy around your children’s stories because you don’t want to label them, right? Information spreads very, very quickly. And it’s out there forever, right? So I’ve always kind of struggled with that. How do you not overshare? And I think the “F-I-G” method is so, so cool because it helps you think through, “Okay, what information do I need to get across to this person based off, you know, the familiarity aspect of it? And then, you know, what’s the intention of this person asking that really personal question? And how do I respond appropriately?” So it was like, “Oh, this is so good”. Like, I remember walking away from that first-year retreat going, This is awesome. Like, I’m gonna use this all the time for everything, like not just for my kid, but for myself and for all the stuff. And not just for hearing loss, but also for adoption and for other things. And it’s really helped me kind of, you know, summer here, and we’re going into camps and stuff like that. And it’s really helped me tailor what I tell, like the camp people, because, yes, they need to know that my daughter communicates a little differently. But they don’t need to know, the grand scheme of everything that goes along with that, they need to know certain information about, you know, what I’ve been saying is very, kind of almost like an elevator speech, like you have, you know, for work. “So, my daughter has hearing loss, she wears hearing aids, and she communicates primarily with spoken English, but she needs to be able to sit kind of close to the teacher, and you may have to get her attention or repeat directions and speak slowly, right?” So you know, very focused on, look, this is something different about my child. And this is how you can help her and how the situation will work really well. Without going into like, a whole big thing, right? A whole big story. And it’s helped me kind of focus on “Okay, what’s pertinent for this person to know, why is it important, and how is the best way for them to use it?”

LS:

And it also sets up the expectation of how you want that person to respond, you obviously can never control other people what they say. But a lot of times people will say that, you know, “I’m sorry”, or that kind of thing, when you just say, “Oh, my child has hearing loss”, because that’s their perspective of what that means. They don’t know everything else about it. But if you don’t even make room for that, you’re like, “Listen, this is the situation, this is what we need, and this is what’s awesome about her as well”, then you’re also shifting the conversation there, and not even making room for that person to like, even bring in their perspective of things. So yeah, I’m really glad you like that the “F-I-G” method is one of my favorite frameworks for advocating and I definitely have a lot of resources on that, will link as well in the show notes. 

I would like to, you know, just from because I’m over here grinning and smiling that this is working and helping people You know, you just sit in your room on your computer, think you’re talking to nobody, but then it really happens. I can’t stress enough how meaningful that has been for me to then say yes, all these thoughts in my head matter and I’m actually making an impact in your life, in your relationship with your daughter.

We talked about this as well, a lot about the protection of our children’s stories, and what we do share online or offline, really recognizing their agency that children are full people. “Wow, what a concept”. [Laughs] It’s a huge thing. 

So can you just say a few words a little bit about what it’s been like being in the program? Because we finished out our year together and what you got from it as well as the other relationships from there.

JW:

So I got a whole lot out of the “Connect & Advocate” program. Some of it was, I guess I would call it like technical knowledge, right? And kind of being able to ask technical questions, whether it was about equipment or about, you know, audio grams and kind of next steps in the journey, which is important because you don’t always have the time with your audiologist. I mean, the last audiologist visit that we went to, basically, the moment that I would be able to ask those questions, it was like, “Nope, I’m done”. And my daughter was just like, I’m out of here, I don’t want to… And at that point, you kind of have to focus on your kid and getting them out of there and into a situation where they can be calm, right? So it was like, Okay, I have all these questions. And now I don’t have the chance to answer them, to ask them. So having a space, kind of on a regular basis to be able to ask those questions is important. I think what else it did was it really set time aside to prepare mentally for a lot of the things that we deal with as parents of deaf and hard-of-hearing kids. So, you know, there are pretty regular appointments that we go to, that other people don’t go to. And you can’t just sit and chat with your bestie about, yep, we’re having another ARD meeting, or we’re having this and how do I prepare for it? Right, we’re doing another sound booth test, because we think, you know, the decibels have changed or whatever, right? You can’t talk to everybody about that…It’s just tough.

LS:

Yeah. Because then you’re in an educating role. And you’re here looking for support, and they don’t even know you’re talking about? 

JW:

Yeah, exactly. So you know, having that space there, I think it was also really beneficial for me to have other women, other parents, on the journey. And granted, we were at different stages of the journey, but we were all there to support each other. And sometimes, things are great, and sometimes things are not great for you. And it’s important to have people that are there with you, and they’re there for you, whether or not things are great or not great, you know, you’re gonna make mistakes as a parent, and you’re gonna have really big, big wins as a parent. And so having somebody that can celebrate with you, or that can commiserate with you and say, you’ll do better next time. That’s really important. That whole building of community and sharing resources, because everybody has access to different things, so just kind of getting more information on what’s out there and what’s available. That was really cool as well. There’s so many good things. I can go on and on and on. Really, really I could I mean, the other thing, too, is like, okay, yes, we are parenting a deaf child or hard of hearing child, but we’re also just parenting a child. And we’re also just living a life, so there are other things that we do. I mean, sometimes it doesn’t seem like it. I feel like this week, it’s just been doctors and birthdays and doctors and birthdays and doctors and birthdays and therapies. But, you know, there are other things we do we go on vacation, we see relatives on Christmas, and being able to kind of brainstorm you know, how do you tell relatives about the best ways to communicate with your kid, when they’re not always around your kid? What equipment do you bring when you go on a trip? I remember, like the first trip that we went on, we had gotten a box of like equipment of, you know, batteries and cleaners and all kinds of stuff for hearing aids. And I just like threw it in the box and we went through the baggage scanner, and they’re like, what’s this? And I’m like, what? She’s got hearing aids, this is her stuff. So how do you pack appropriately? And what do you bring? And what do you do if something breaks down on the way? or, you know, what happens if your child gets in the bathtub and still has their hearing aids on? how do you troubleshoot those things? Or even if you know how to troubleshoot those. It’s nice to have somebody go, “Yeah, been there, It’s okay”. Just having that support and that kind of soundboard feedback was really, really great.

LS:

It has been an incredible year. And I specifically really wanted the group to go for a year to hit all those different seasons and changes, beginning of school, end of school, and different holidays, different seasons as well, what’s different in the winter is different in the summer. So it’s that support for that whole year. And the group that we had is so, so powerful. What a beautiful connection between the ladies, the moms, I mean it is open to dads, honestly any parent, any caregivers, really. So welcome. And if anybody wants to learn more about the ”Connect & Advocate” program, we’re going to be starting in September after the summer for our next cohort. So if anyone is interested, we’ll definitely be talking about that more on the podcast and then Instagram and everything else but send me a DM we set up a chat I’ll love talking to you wherever you are in the world, by the way, International. We also have people from, well, three different countries now so there’s room for you wherever you are. 

Jen, thank you so much for sharing and being such a wonderful communicator. Oh, what’s this all in like for you? If people want to connect with you or find your work where can they do that?

JW:

I have several different Instagram accounts. So I have an Instagram account called @teamwalkergonegloball, we really like to travel a lot. And it’s mostly just pictures of our trips whenever we travel. Technically, we have a blog under the same name, but it hasn’t been updated in at least a year. And as well @80sgirlhtx. So that’s just kind of my personal account where I put like crafts and stuff that I like to do. Yeah, so I’m always looking to connect and follow people.

LS:

Thank you so much. It’s really valuable for people to even just see that there’s other people doing what we’re doing. Even if no one in your town or no one in your family knows about this. There is a community out there. So here we are. Find us.

JW:

Yeah, it’s interesting, though, you know, they say that a lot of people like the first deaf person they meet as their child, right? Well, really, my mom is single-sided deaf. And she’s been that way since she was a kid. She had something medical happen… anyway. But I kind of forgot about it. Right? Because she has adapted so much to the hearing world that you kind of forget about it, except sometimes she’ll remind you, “I can’t hear anything on that”. Then whenever I got involved in, you know, the Deaf community, Deaf world, for the sake of our daughter, I was like, “Oh, my mom’s actually struggling with a lot of this stuff, too”. And they kind of like changes your view to some extent. So it’s nice to kind of have that broader community and realization to say, there’s more out there, you’re not alone.

LS:

That’s so good. It’s a perfect way to end. Thank you Jen and thank you to the listeners. And absolutely come and drop a message on Instagram or Tiktok, or the Facebook group or the website allaboutaudiology.com. I’m Dr. Lilach Saperstein and thank you so much for being a listener, and we’ll see you in the next one.

The post All About Connecting with Your Whole Child - Episode 90 with Jen Walker appeared first on All About Audiology.

Read the full transcript here

On episode 89 of the All About Audiology podcast, Dr. Lilach Saperstein speaks with audiologist Batya Jacob. Batya is an audiologist by profession and also is the founder of a free hearing aid lending program. When Batya shares the origin story behind the program, when her son needed to get hearing aids, she realized that medical insurance in general doesn’t cover hearing aids and that they are quite expensive. She now supports those who are Deaf or HoH with organizing a free lending program. This program is open to the global community and anyone can benefit from it; even you! Contact [email protected] for more information. 

This week on the All About Audiology podcast:   

• 7:00 -  Since hearing aids are expensive, parents may want to put money aside in a special place for the future’s sake.

• 8:00 - Most medical insurance companies do not cover the cost of hearing aids

• 10:40 -If a hard of hearing child is prescribed the use of hearing aids, it’s important that they have access to properly fit hearing aids as soon as possible

• 21:00 - The earlier young individuals learn about inclusion, the more likely they will be attuned to equitable access as an adult, employer, etc.

• 25:00 - It is so powerful when a community promotes a sense of collective sharing in order to take care of each other!

• 29:00 - Give your child the proper time and attention that they deserve in order for them to reach their full potential.

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

And the Prodana pay-it-forward platform here: https://prodana.org/practioner/lilach-saperstein/audiology-counseling–dr–lilach-saperstein

(Guest Links)

Mentioned in this episode:

• Yachad

Listen Next/Related Episodes

• All About Equipment- Episode 33 with Dr. Julie Renshaw
• All About Innovations In Hearing Aids – Episode 76 – with Dr. Jodi Saski-Miraglia
• All About The Stigma and Benefits of Hearing Aids – Episode 77 with Dr. Brian Taylor

Transcript

All About Audiology Transcription

Dr. Batya Jacobs:

I work for Yachad. But I’m an audiologist, I understand how hearing aids work, I understand how hearing loss works, we could create a system where we collect used hearing aids from people because they’ve got new hearing aids because they’re not using them for whatever reason, because unfortunately, somebody has passed away… Let’s collect those hearing aids. Let’s work with audiologists and hearing aid dealers in different parts of the country, and it’s spreading around the world a little bit now, where we can offer to people, a free lending program, where people can send us their audiograms, their hearing loss table, and we can match as close as possible the hearing aids we have in our stock to their hearing loss.

Dr. Lilach Saperstein:

Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. And on this show, we talk about so many different aspects of audiology and your experience with the field of audiology. Because there is so much that goes with it. It’s not just for testing and maybe getting devices, but it’s a much bigger experience of how this affects your life, your child’s life, someone that you love. So we are always talking about the different elements of having someone in your life who is deaf or hard of hearing, especially a child. Or if that is your experience. In addition, the professionals that are working with this wonderful population, we have SLPs, and audiologists, and teachers, joining and tuning into the podcast. So thank you all for being supporters of the All About Audiology Podcast. Today on the show, we’re talking about the price of hearing aids and the prohibitive access to devices when you need them and cannot get access to them. Well, what are you to do? There are so many incredible people lobbying, and working with insurance, and trying to change laws to make it that these very expensive devices can be accessible to more and more people. But there is someone doing something very unique… So I’m excited to introduce you to Batya Jacob, an audiologist in New Jersey, who is going to be telling us about free lending society and other things. So welcome Batya to the show. 

BJ:

Thank you for having me. Such a pleasure to meet you and to be here. 

LS:

Thanks. I love talking. That’s number one. But also love learning about what is going on underground. As this is an issue a lot of people have. We hear it from everybody. So so expensive, 1000s of dollars expensive to get a pair of hearing aids, I mean, even just one. And in early intervention, things are covered. If you have really good insurance, things may be covered. And of course, this is also different in many different parts of the world. A lot of different countries have different ways that they set it up. So I’m curious to hear how you got into this. But before that, I am interested in your background and how you even got into audiology. 

BJ:

I think it started when I was a little kid. I read a lot of books about Helen Keller, and I got very motivated by her life. So I decided that I wanted to work with this deaf and hard-of-hearing population and coming from a world of… my father was a pediatrician, and so I have this medical model in my head, I decided I wanted to go into audiology. I was a student in speech and hearing at Boston University’s. [It was a] different century. I then met my husband who has a deaf brother, you know, God leads you in different ways. We decided to get married, I kind of became the, in some way, the sign language interpreter of the family, certainly at all religious celebrations of the family because nobody really in that family knew sign language and he was communicating with sign language. 

LS:

And at what point did you learn sign language?

BJ:

I decided to take a sign language class in college because I said if half the people who are coming to me communicate by sign language, I need to be able to communicate with them. Whether I wanted my clients to be able to speak or sign I needed them to communicate and how am I going to be able to communicate with people if they’re only coming in signing?

LS:

Wow. This has to be a whole other episode.(Laughs)

BJ:

A whole other conversation about communication, which is really truly a whole different discussion. And I’m not an interpreter in any way, trust me. So I became this like, kind of in lieu of a real sign language interpreter, it was me. My husband and I got married, we had three children and then we had a set of twins, and the twins: girl and boy are at birth. Probably two hours later I turned to my husband, I said I can’t tell you our daughter hears I know our son is hearing less than cheese… and everybody said to me, you’re crazy, you are this hyper-crazy parent, why are you putting problems where they aren’t?. This was before universal screening of babies. The twins are now 32 and a half. They didn’t want to test him in the hospital, they said I was absolutely out of my mind. They made every excuse possible. And I was so sure he could not hear the same as his twin sister. I was trained to look at babies and listen to them hear [and] see what they were doing. I literally bundled the two babies up. Took them up to my graduate school program at the University of Connecticut to my professors. And sure enough, my daughter’s hearing was normal. And my son had a severe to profound hearing loss.

LS:

You were able to see that so soon after birth.

BJ:

Literally, I tell you, within hours of his birth. It was so clear that the phone would ring that she would stop nursing and he would just keep nursing. We had hearing aids on him by the time he was five weeks old, to a point where we would tape the ear molds into his ears because they were so tiny. 

LS:

Yeah. 

BJ:

And I was called aggressive. I was accused of making my baby look like an old man.

LS:

Wow!

BJ:

You wanted stories, right? (Laughs) Anything you can imagine, but we were determined that he was going to communicate with whatever modality he could. And he was on early intervention by the time he was six weeks old. He now lives in Israel. He is an accountant. He is married with three hearing children. If you met him, you would think he had Bluetooth in his ears, you wouldn’t even realize necessarily from his speech that he doesn’t hear.

COVID was very hard with masks, I must tell you. And as parents, realizing that hearing aids were going to be a lifetime investment for him, we put money aside when he was born. So that he would have this foothold, that we would have money, that he would be able to afford hearing aids whenever he needed. But we quickly realized that medical insurance in general doesn’t cover hearing aids. Because in America, at least the way the government has written the law. Hearing aids are categorized as optional prosthetic devices. That’s the terminology in the federal government. If they’re optional, they don’t have to be covered. And I work for a program called Yachad, which is an international program that works with individuals with all sorts of disabilities, including developmental disabilities, mobility disabilities, Asperger’s, ADHD, hearing loss, and deafness is one of them. We have had a lobby going on for at least 10 years now, trying to get the word optional to necessary. Because if we can change the word to necessary, then the insurance companies will start to cover the cost of hearing aids.

LS:

Wouldn’t that be something?

BJ:

But the lobby blocks for medical insurances are much stronger than we are, unfortunately. I’ve been working for Yachad now for almost 25 years. We have been actively trying to get hearing aids covered. There are some insurances that are starting slowly, slowly to cover a piece of it. But not the whole thing. There are parts of Medicare, Part C, the Medicare Advantage, that are starting to cover a piece of it, but not the whole thing. And what we started to hear, what I started to hear from parents especially was: “the school district will purchase my child’s hearing aid, but they’re telling me the hearing aid belongs to the school. So my child goes to school and puts the hearing aids in their ear, and it’s three o’clock when the day is over. My child has to leave their hearing aids in school, and they say is my child’s own deaf”

LS:

I’m raging… boiling. I’m trying to do that quietly, but oh my gosh.

BJ:

So in the summer, there are no hearing aids. From three o’clock in the afternoon till eight o’clock the next morning, there are no hearing aids. We were creating children that were deaf, most of their awake time. And in the social environments of family and friends and on weekends. And then we look at older people on limited incomes, who can’t afford these hearing aids. When my son, before he moved to Israel, we bought hearing aids, before he met Aliya before he moved, they were $5,000 each. Most people don’t have that cushion to be able to purchase that. 

LS:

Right. And I think this is one of those things that people don’t talk about very often. When you sort of think that audiology is part of healthcare and in general there’s a lot of issues with accessing all sorts of different healthcare. Models are very broken… But when it comes to hearing aids, I think people almost assume. So automatically necessary, of course, it should be covered. Until it becomes your problem and then you realize, wait a minute, not really. 

BJ:

Right. And so many people said to me, if the person’s old, what do they need to hear when they’re older? Or…

LS:

Huh? 

BJ:

That child doesn’t need to hear till they go to school. So why aren’t you putting a hearing aid on them till they’re five? And I’m like… because they don’t start developing language when they’re five, they need to hear from the moment they’re born, so that they’re developing language on a pattern, and that they develop language in a normal pattern like every other child does, so that they’re not delayed. So I went to the heads of your Yachad and I said, we need to do something. This is criminal. I used that word. I said, it is criminal, what’s going on here. I’m an audiologist. I work for Yachad. But I’m an audiologist, I understand how hearing aids work, I understand how hearing loss works, we could create a system where we collect used hearing aids from people because they’ve got new hearing aids because they’re not using them for whatever reason, because unfortunately, somebody has passed away… Let’s collect those hearing aids. Let’s work with audiologists and hearing aid dealers in different parts of the country, and it’s spreading around the world a little bit now, where we can offer the people, a free lending program, where people can send us their audiograms, their hearing loss table, and we can match as close as possible the hearing aids we have in our stock to their hearing loss and send them back. So what happens is, somebody would contact me and say, I need hearing aids, but I can’t afford them, anybody, they have to see a doctor to make sure their ears are healthy. And then they go to either their audiologist or hearing aid dealer, send me their audiogram. I’ll look at the stock of what we have presently, and I will match it up as close as possible and send them two sets for them to try. They take those hearing aids to their audiologist or hearing aid dealer. If they don’t have someone to go to, we have in some places geographically around the US, dealers that they can go to that work with us who will tweak what we send them and try it with them. If the hearing aids work, they are free to use them for as long as they want. There is no fee from us. It is free. 

LS:

Wow!

BJ:

Whatever doesn’t work we ask them to return it to us so we can use it for someone else. If the two first sets do not work, they send both back.

LS:

I think that the biggest question most people might have right now is wait a minute, how can you take hearing aids that would be made for one person and use them for another person. So clearly, you’re not talking about “custom” hearing aids. 

BJ:

Well, generally speaking, we really try to tell people that the ones that fit in the ear are not going to work in this system, because you can’t remodel them to somebody else’s ears. Most of the hearing aids we are using are behind the ear hearing aids. What you’re going to wind up paying for is whatever fees your person charges you, your fitter charges you, and the cost of a new ear mold. Because those ear molds have to be made for you. But instead of thousands of dollars, you’re paying a couple of hundred dollars. Big difference.

LS:

Wow!

BJ:

We used to get very old hearing aids. We’re getting a lot of digital hearing aids now, which are amazing. We’re getting a lot of hearing aids that really are programmable for specific hearing losses, which is so nice. We also work with a rabbi from Baltimore, who has answered a lot of the Jewish law questions about wearing hearing aids and cochlear implants on Sabbath and on holidays. Because a lot of the hearing aids that they make now are programmable with your iPhone. So we have those sources that when people ask us questions, we have somebody that they can go to directly. We have books that we can send to them if they want that. To answer questions, because there’s so many new questions that definitely when my child had his first set of hearing aids, we didn’t know where to turn to. We went to our Rabbi, the Rabbi said yes, he’s going to wear them, now I’ll find out how, you know? Literally.

LS:

Yeah, you know, this is very interesting, too. And I think our audience will find it fascinating as well. I also teach at the university level. And there’s one class we always teach on cultural competence, and how different groups of people in different traditions have very specific needs. For example, in some cultures making eye contact is very respectful whereas, in other cultures, if a child makes eye contact with an adult that’s so forward and rude. So having sort of a knowledge of what’s appropriate for each person specifically in each family is so important. Imagine the child’s goal is to make eye contact with adults - that’s specifically contrary to what they’re being expected to do at home. So that’s one of the common ones and in terms of hearing aids and what you’re talking about: if someone doesn’t know that Orthodox Jews won’t use electronics one day out of the week. Well, that’s pretty significant when they need assistive technology. And even though there’s sort of an exception or leniency. There’s still people that have questions about how you would go about using that.

BJ:

I remember when our son was about six months old. We had a family come to us for lunch on Sabbath, and they’d been to us many times [before]. They came into the house. They saw our son wearing hearing aids and the father announced at the top of his voice ‘children you can’t eat here they no longer keep Sabbath.’ 

LS:

Wow.

BJ:

And my husband and I were mortified. Needless to say they’d never been back (LS and BJ laugh) But we were mortified. And we were like ‘don’t you think we asked what to do and how to do it.’

LS:

So yeah, because to them, they were looking at you and they said we can’t trust that your food is on our standards in terms of Kosher as if they just saw you eating pork.

BJ:

Right. 

LS:

Because you didn’t keep this law.

BJ:

Because our kid was wearing an electric device in his ears.

LS:

And it’s also that combination of ableism, and discrimination against disabilities, cultural norms, and religious observances. Like just hit all the pain points everywhere.

BJ:

Absolutely.

LS:

What a thing. So do you think that the older siblings felt that this was a moment for them to advocate for their little brother?

BJ:

I think that initially they were like kind of shocked and taken aback. I think it was the eight year old, the oldest one, [that] kind of wanted to make a joke out of it. Like ‘what are you saying? Who do you think you are?’ And he turned to me with a word [saying]:. ‘Oh, good, mom. I liked your food. That means there’s more for us to eat.’ 

LS:

Yeah. 

BJ:

But they became very protective of him in a certain way like no one was going to ever say anything like that to our brother again. But I think culturally as you go through life, at certain junctions in life, you see these prejudices. And when you’re living with a disability, no matter what that disability is, these prejudices come out from people. And they don’t really even know sometimes what they’re saying. Sometimes they do it spitefully and sometimes they just don’t even realize that you’re saying something that could be hurtful.

LS:

It’s true. So much is out of ignorance. And then you have a decision if you’re going to be the educator and change the world. Or, you know, say actually, this is not my fight today, and I’m going to hold my people close and say thank you, goodbye.

BJ:

Right, I think sometimes unfortunately, I want to fight. No (laughs)

LS:

That’s okay.

BJ:

It’s because nobody should be treated poorly because of the way God made us. And I truly believe each of us is made the way God intended us to be made. No one is better or worse than another person. Just the way we are. And each of us has something that’s a challenge. And each of us has things that we add to the world. So who has the right to judge what’s better or worse than another person? So this is, I guess, one of the small ways that Yachad tries to help people’s lives for the better.

LS:

From what I know, it’s also very much about introducing and including people in the community with other people, rather than isolating and saying, ‘Oh, the programs are only for disabled kids in any sense,’ but really bringing them in.

BJ:

Yeah I mean, I remember when I started in Yachad, if there was a handful of children in typical schools, certainly typical Jewish schools, that was a lot. And now I think it would be hard to find a typical school that doesn’t have a child who learns differently in a classroom. It’s the way we teach now. Every child learns differently. So every child has the right to be included. And we work with teachers all through the world to help them include every type of learner, and it’s not always easy. We know that. We just published a siddur, a prayer book, that looks like the typical prayer book that you would find being used by any other member of the congregation. But it’s made specifically so a person who has developmental disabilities can follow it [and] can understand the meaning. It’s color coded so that they can recognize which prayer is said when. It has picture graphs of when to bow, how you bow, when to cover your eyes for prayers. So that it guides them so they can pray along with the rest of the congregation, but they don’t feel like they’re praying out of a book that was written for five years.

LS:

Wow, that’s really, really such a unique place to introduce accessibility. And I think it’s so important - [going] back to the idea of things that need to be culturally, religiously [inclusive], that has to come from within the community, for the people in the community. That’s something that’s very special and very important. 

BJ:

Yeah, [also] camps is like a perfect example. Because anything can go in camps. It’s a place where there is so much less judgment. You don’t get graded by how you play baseball or, or soccer, or do an art project. So it’s such a great place to be inclusive. And so many camps want to include people with disabilities. So you have to make those connections and Yachad has been very successful. Other programs also have been successful with this, but it’s a great place and when you make those bonds in those friendships in that laid back easygoing summer experience, it comes back during the year. And then they go out for pizza. It just reaches back into the community and works one thing on top of the other and it’s such a great friendship and an opportunity to really bond. And then as they get older, these are employers who are going to include employees in their programs because they’ve already learned the abilities of people who have disabilities.

LS:

Powerful. So let’s bring it back to hearing aids for one second. Because I think another question people would have about the free lending society or the gemach, in Hebrew. So if somebody would be in need, and would want to learn about the gemach, or how they might get hearing aids from a free lending society, what would they do? What would be their steps to go about that?

BJ:

First, they’re going to go to their own hearing aid dealer or audiologist and they’re going to get a hearing test. They’re also going to go to their doctor - so somebody’s looking in the ears to say their ears are okay, and that they’re healthy. [Then] they’re going to email me. My email is Batya, B as in Barbara. A,T,Y,A. J for Jacobs at OU.org.

LS:

We’ll definitely have that in the show. 

BJ:

Okay. And they’re going to email me and tell me ‘I heard about the gemach, the freelancing society. I’m interested in getting hearing aids.’ And I’m going to ask you to send me your phone number. And we’ll set up a time to talk. Send me your audiogram and the letter from your doctor. And then we’ll set up a time to talk so I can find out a little bit about where you live, your lifestyle, what you’re looking for. Because some people may not even be ready for a hearing aid. They may want just an amplifier like the desktop amplifier. We do have some of those in this program. A few, not a lot, but a few. We have amplifiers for the phone [and] for the TV. So we have all sorts of equipment. We have batteries that people have donated. Somebody once wanted to try to donate your prosthetic leg. We did not accept that. I must tell you because honestly, I wasn’t sure what to do with it.

LS:

What about FM systems?

BJ:

So we have one or two FM systems. I really don’t lend them out too much because I kind of want them to go back, but sometimes the audiologist will contact me. And we’ll have that conversation also and that’ll help guide me better too. So we do have a couple FM systems. After the conversation, I will look at what they send me, their test results, and I will send out what we have that might match. I can also tell you that if people who are listening have hearing aids, specifically behind the ear hearing aids, that they want to donate, we would love to have them. We really are in need. We have about 80 to 100 pairs of hearing aids right now in people’s ears, and we have about 75 to 100 pairs of hearing aids in the cabinet to go out. But we’re always looking for more. And if there are any professionals who would like to be on our list to work with us, to help people. We would love to know who you are. Because we have people out in California who want to come to us and we have somebody in the LA region or somebody in Tel Aviv or somebody in London, who we can send our person to. It really helps people who are coming to us. 

LS:

That’s fabulous. And you know the other thing I want people to take away from our conversation is that this is something that you can also do within your community or within your practice [or] with your network. You know, if you’re on the professional side, if you’re a parent, there’s so much that we can do. That’s the idea of collective sharing, especially throughout the pandemic. I think a lot of us have learned local, local, local. The people around you are the people you have. Really. And the idea of having a communal fridge in the neighborhood or an apartment building. We actually have a room and building where I live, which is kind of a drop-anything-take-anything room for old kids bikes or toys or roller skates, sort of outdoor kid equipment. And that is such a lovely thing. Of course everyone still has things that belong to them: their own kids bikes that are currently theirs are not in that room. But it’s really a sweet thing. Of course thrift stores and like there’s this model in different places in different parts of our lives. But when it comes to medical equipment, I think people will say, ‘Well, what do I do with this thing?’ Like if it’s three or four or five years old, they don’t need it anymore. For all the reasons you mentioned before. There is an address where this can go on to help someone else. It’s not over. Maybe they might think oh, the molds are dirty or the molds are old. Well, don’t worry, the person will get new molds.

BJ:

Right. The mold is the least expensive piece of the whole equipment. And nowadays they’re not even using molds. They’re using like little plugins. So that is the easiest piece to give a person. It’s the hearing aid itself and as our hearing aids are getting better, getting more specific to different types of hearing losses, they’re getting more expensive. And the insurance policies are not getting better in terms of paying for them. That’s just reality. So we as a global community need to take care of each other. This is a way we can.

LS:

So I have a technical question on the side of what about certain devices that are actually locked. You can’t actually make changes to the programming. They sometimes are doing software that they don’t want people passing them from person to person even though technically you should be able to do that.

BJ:

So I haven’t run across it yet. It may be what’s coming into me or maybe that I’m just doing a really good job matching. [laughs] I haven’t had that problem yet. So I don’t really know the answer to that. 

LS:

Okay. Good. Let’s  not create problems where there are no problems.

BJ:

Right

LS:

I do want to stress that you know, we are part of the Orthodox Union, but this is a program that is open to anyone. And I really want to stress that it’s not open to only Jewish Orthodox people. It’s not open to only Jewish people. This is a program that we really are sharing with the global community. And that’s really important to tell people. Spread the words to your friends. Spread the word to the people you’re working with, to your colleagues, to your friends, to other parents. This is an issue I as a parent have faced. I as a clinician have faced with parents who have come in to me. No child should go home yet no adult or teenager nobody should have this be an issue for them.

LS:

Wow. Definitely. I think people in our community will be very excited to hear about this. So thank you for sharing with us with [the] All About Audiology community. That is very important to know. I would ask if you have advice for the parents listening. So your son is 32. You have many, many years of experience being his mom and also the other kids of course. I think so many of our listeners are new parents, young parents, overwhelmed and new to the journey.

BJ:

I think I would tell you never give up. Believe in your gut feelings. Believe in your child. They can accomplish anything that you give them the confidence they can do. They may find a different path, a different route to do it on. But they’ll get there, maybe slowly but they’ll get there. There are so many times my child turned to me and said, I [meaning Batya] did it wrong. You told me I couldn’t, and I did. And I think to build that self confidence and that self reliance is probably the most important thing we can ever give to our children. I think for any child, we want them to reach their fullest potential, whatever their potential is. And if we believe in our kids, that belief will come down to anybody who comes into contact with them and to the child. As parents, I can tell you that I was always afraid my other children would be upset with us that we gave him the extra time that he needed. As adults every one of my children came back to us and said ‘thank you for giving him that time. Because he is who he is because you gave him the time that he needed when he was younger.’ Don’t second guess yourself, give your kids each one of them the time that each one of them needs and deserves and never ever give up on them.

LS:

I’m so glad you mentioned that about siblings, because that’s something that comes up a lot in our conversations in our community around the resentment and the unfairness that ends up happening when one child has appointment after appointment. And the other children, well, they’re sitting around waiting [with] no attention on me. Yeah. 

BJ:

You’re juggling, right?

LS:

So what are some tips for that? What would you say? I mean to have your kids come to you and say good job. We didn’t feel that. What? Tell me more.

BJ:

And they didn’t feel it, but they realized it later. And I kept saying, I’m gonna give each one of them individual time, but you couldn’t always do that. And my son had a twin sister. So it was even harder. It wasn’t like I could say, oh, you’re older so I don’t need to give you the same attention at that moment. She was the same age as him. And it wasn’t always easy, and I always tried to somehow play the balance as much as I could. But I learned very early that fair isn’t always equal and equal isn’t always fair. 

LS:

I need that on a pillow.

BJ:

And gave them all lots of love. I made a very big effort every night to reach each child individually and as they got older, to give each of them like that five minutes before bed individually. So bedtimes alone time.

LS:

I’m hearing that five times five, that’s 25 minutes.

BJ:

But it was worth it. It really was worth it because they appreciated that also. The time you put into them comes back, and it really makes it worth it to you and to them. They feel that you’re invested in them. And as parents, thank God, they all have children and each of their children have their own needs. And I believe every kid has special needs, diagnosable or not. And they said to us we learned a lot about being parents from watching you parents us, because you know sometimes if you don’t kill them, they just come back and tell you good things. [both laugh]. But it’s really true. Like they can learn to understand that juggling act is so hard, especially because besides the kids you have to make dinner and do the laundry and work and all the other pieces of your life doesn’t just go to the wayside because you want to spend the five minutes with each one of those kids. It takes time. It takes determination but at the end of the day, it’s really worth it.

LS:

Very true. Yeah, exactly. And a very, very special shout out to the single parents who are even doing that without a partner.

BJ:

And I also want to say if you have grandparents who are nearby, and in today’s world, they don’t even have to be nearby. They need to maybe have just a computer and they want to be involved. Let them be involved. Let that parent spend five minutes reading the story, even over zoom to your kids. Use that support system. They want to be involved with your kids too. Your kids will value their time with the grandparents, [and they] will build that relationship and that really helps with some of that juggling really makes a big difference. 

LS:

Yes, screens are not the enemy. 

BJ:

They’re not! They used to be before COVID. We thought so, but they’re really not the enemy.

LS:

What you do with them, for sure. I like the way you keep saying five minutes, five minutes. Right, this doesn’t have to be a 15 hour endeavor. It’s the little things consistently over time. I talk to my kids all the time about how we need to brush our teeth every day. And every day they want to know ‘but we did this yesterday.’ [both laugh] But we are going to brush our teeth every day for 2 minutes. Not once a week for 30 minutes. [LS laughs]. Similar to that is the building of that consistency. This is awesome. And one last thing. What would you say to someone who is interested in participating? Do you accept donations besides for hearing aids themselves [such as] monetary donations? Is that also what is happening here?

BJ:

Of course! We absolutely accept donations. I will tell you that donations that come in go directly to programming, to scholarships for people, for families, and for participants to be able to join any of the myriad of programs we run. Whatever the disability is, you can earmark it to a particular region or a particular program. We have programs that range from social programs, to camps, to schools, to the hearing aid programs. Basically, you name it we probably have it. [We also have] holiday programs. We have family respite programs. We have counseling, it is all through the United States, Israel, Canada. So you can email me. I can help you match what you might want to give. And I can tell you, it doesn’t matter what you want to give. It can be as little or as much as you’re able, it is all useful and old, greatly, greatly appreciated.

LS:

We’ll have that link as well, where you can learn more about this programming. I’m so so grateful. Thank you so much. I really appreciate your time and sharing your story and all the work that you’ve done all this time with this incredible, free-lending society that is providing for so many people and access.

BJ:

Thank you so much for allowing me into this amazing network that you’ve created. 

LS:

And thank you to all the listeners of the All About Audiology podcast. If you’re not following on Instagram, that is where we have lots of updates and also where you meet other people in the comments. So come and join at All About Audiology podcast. There’s also a Facebook group. And thank you thank you to all the patrons of the podcast. You can become a patron at https://www.patreon.com/join/allaboutaudiology. All the links and full transcript of our conversation is at All About Audiology podcast. All the previous episodes. So search in the search bar for any topic, any question that you have, feel free to reach out to me anytime. I’m Dr. Lilach Saperstein, and this is the All About Audiology Podcast.

The post All About A Hearing Aid Lending Program - Episode 89 appeared first on All About Audiology.

Read the transcript here

This week on the All About Audiology podcast, Dr. Saperstein interviews Janna Cowper. Janna, who is hard of hearing, also has 2 daughters who are HoH themselves. Janna is the founder of Hardofhearingmama.com. She shares her own story as well as education posts on Instagram. Currently, Janna is studying  at Gallaudet University with the goal of becoming a Deaf Mentor. 

This week on the All About Audiology podcast: 

• 3:20 - When one is writing reports for clients/patients, the wording and labeling used in the introduction and summary to describe this child, really matter.

• 9:00 - When kids see their parents advocating for their needs, they can learn to advocate for themselves too.

• 12:00 - If accommodations are helping to support a child, do not take those accommodations and such access away.

• 21:00 - Medical professionals are experts in diagnoses, therapy, and best guidance;  clients are the experts on the actual lived experiences of these diagnoses. 

• 32:00 - Before speaking about milestones and goals, professionals can repeat parents’ requests so that the parents know that they are initially being heard.

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

And the Prodana pay-it-forward platform here: https://prodana.org/practioner/lilach-saperstein/audiology-counseling–dr–lilach-saperstein

Connect with Janna:

Janna’s Instagram Page

https://hardofhearingmama.com/

Mentioned in this episode:

• Dr. Michelle Hu @mama who hears
• Chloe Tompkins
• Gallaudet University
• https://hardofhearingmama.com/affiliate-links/

Listen Next/Related Episodes

• The Ups and Downs of Tara’s Communication Journey – Episode 85
• All About navigating deaf identity with -Episode 86
• All About Advocacy Organizations – Episode 59

Transcript:

Dr. Lilach Saperstein:

Welcome back to the All About Audiology Podcast. I’m your host Dr. Lilach Saperstein, and on this show we talk about all things that are related to your actual experience and your life. Not just about hearing loss, audiograms, and devices, [and there are] so many tips and tricks we can share. But what I love to bring up for us also is this other part of the journey that’s about identity, and advocacy, and connection, and communication, [and] the stuff that actually matters, like how to talk to our kids and how to make them feel like they’re super amazing, important, confident. And also that we should feel that way as parents in general and as professionals as well.

Today on the show, I’m so excited to be joined by Janna Cowper - hard of hearing mama. You for sure know her on Instagram or from hardofhearingmama.com. [She has] so many amazing posts and conversations, and I just love being in your sphere and seeing what you’re creating. So I’m really excited to dive in. Welcome, Janna to the show.

Janna Cowper:  

Thank you so much. I’m really excited to be here.

LS:

So you, yourself are hard of hearing and you also have children who are in this same experience. So I’d love to hear how your experience growing up is different than what you’re providing for them. I think that contrast would be an interesting thing to go back [to reflect on]. Also looking into the history, how things have changed over time, but also will be hugely valuable to our audience. And as we all know, the majority of hard-of-hearing children and deaf children are born to hearing parents who don’t have any experience or understanding (certainly not personal experience for the most part). So I think it’ll be fascinating to hear, take it away.

JC:

That is a loaded question. There’s a lot in there. So I’m going to try and break it down. And I’ll just talk about some key differences between when I grew up and the age my children are growing up in. We are in different times of life, the world, centuries, the way stigmatas are seen are different, the way hearing loss and deafness is looked at is different. [And] even if there’s a lot that hasn’t changed, there’s a lot that has. And that includes technology and that includes awareness and education. And one of the key differences is just simply who you’re surrounded by. My hearing loss is hereditary; it’s on my mother’s side of my family. And it gets passed down. If I hadn’t passed it down, it would never be packed down. But if I do pass it down, my kid can potentially pass it down. 

I grew up in a time where, in my family chain, they were never really heard of a Deaf community. So there was always someone in the family with a hearing loss and so their view is [that] you need to blend in. You need to be like everybody else; wear your hair down [and] cover your hearing aids because you don’t want people to see it. You don’t want people to know [you have hearing aids]. So this was ingrained in me as a child. Now for my children growing up [I instill in them that] you are hard-of-hearing, you are deaf. This is who you are and that cannot change. You don’t need to hide it. Be proud of who you are: wear your hair up, decorate your hearing aids, get beautiful colored ear molds or spunky colored ear molds, however you want to refer to them, [and] celebrate it. And those are just two different narratives being formed in the way we’re growing up. Now I’m not saying what my parents did was wrong. That’s what they were taught. And I just happened to grow up in a way where I learned things.

LS:

This brings up for me the concept of identity first or person first. I actually recently taught this to my students in their oral rehab university level class. And the assignment was [to] go research these two approaches and tell me what you think. [And I asked them to answer:] what’s your opinion of which one is correct. And of course the answer at the end is context dependent. It’s case by case and there isn’t necessarily a right one. It really depends on so many factors. But the idea in short of identity first: is saying that I am hard-of-hearing or I am deaf 

and person first: is saying I am a person who is hard of hearing or I’m a person with hearing loss. This whole linguistic semantic way of getting very nitty gritty with the way people describe themselves, the way professionals talk about you and about your child. It’s very loaded, and it will change over time. So I think something you’re describing is sort of within that debate.

JC:

I mean, it’s interesting to look at it that way. I have to confess as someone who has grown up being hard-of-hearing, or deaf, or with hearing loss or however 

LS:

Right, you start tripping up. You don’t know what to say.

JC:

Well, I guess if I’m being honest, I’ve never thought about the way I identify myself as identity first or person first. I know what you’re talking about. I know the concept of it, and maybe I should think about it more, but I guess I’ve never thought about it that way. I am deaf and I am a person who is hard-of-hearing. They both for me are applicable. And so I haven’t given a lot of thought to the argument, and for my family personally, about whether it’s person first or identity first.

LS:

And I actually think that’s one of the major sensitive points/issues that people focus on that, like what is the wording, and start having fights and [then there are] Facebook threads that go on and on and on of people arguing about what words we are using and how we should approach this. *sighs* And I really think there’s a lot of grace in both directions. [And] that it doesn’t necessarily matter the exact wording and it might change. It probably will change over time.

JC:

I think you said two true things. It probably will change over time. And you said just a few minutes ago that it really depends on the individual and their preferences.

LS:

Yeah, we were talking about when you’re writing reports for your clients/for your patients, what wording you use in the introduction and summary to describe this child really matters. It comes with them. These labels are important because they matter for what services they’ll have and how they’re seen. But I really want to always bring in the human side so I’m very grateful to hear that for you it doesn’t really matter. It’s not the point. So tell us a little bit more about when you were growing up. So this [condition] was in your family. It was part of the experience that was familiar to the people around you. Tell us more about that. 

JC:

Well, when I started talking about my family online, my intent was to talk about being heard of hearing and raising heard of hearing kids and the joy that comes with it [and] the activities we can do together [and] how we work on speech and language. And that was the intent. And once in a while, I’ll throw in stories about when I grew up and my access at school. And suddenly that topic kind of hit home for a lot of parents. Especially hearing parents who kind of wanted to understand what their child might be going through. So I started diving into that a bit more. And what I found in kind of having to think about the way I grew up is I had access in some places, but I didn’t have a lot of access. There was not a lot known about education. And as a child, you’re not thinking about your access. I can look back at it and say, ‘oh, clearly I did not have access.’ But as a child, you’re not thinking that. As a child, you’re in school, you want to go home, you want to watch TV and you want to have your snack. But when I talk about access to school I’m talking about things like I had an FM system. That is access, but technology has changed. Back then, in the 1980s specifically, FM technology is not what it is today. So for me it wasn’t really access. Basically it was a piece that attached to my hearing aid. I wore a box. The string between my hearing aid and the box was too short. I walked around lopsided and no kid wants to do that. I even had to sit lopsided; that’s how short it was. And then it was staticky. And then I got in that group to take away from that. And then you’re trying to get in that group to work with your telecoil. And, you know, no kid should be working that hard. And no kid is gonna hold their telecoil up and that was the 80s FM system. It was staticky. It had good intention to get the teacher’s voice to the student. But then if the students talked, you kind of had to figure out what was going on. FM system today, and not even fully FM systems, mini mics for my kid growing up today [such as] my kid in kindergarten – she got that accent of her teacher having a mini mic and it can be adjusted so that she can still hear other students around her. So she doesn’t have to figure out when to turn it off. That’s a difference in access. Another difference in access is education. When I was growing up, teachers didn’t know about accessibility options for hearing life. Some people had me sit in front of the class. Some people said I didn’t need to because I didn’t want to. But if I asked for extra time on a test because of noise [or] if I asked for help with things I didn’t understand, I was told that giving me extra notes or anything would be an advantage over other students. I know today, there’s still issues with that. But I know today, looking back, that I can advocate for that on behalf of my kids, because I couldn’t recognize that. So that’s just a bit of a difference. And I’m not saying that my parents didn’t recognize that, but today I have a network of teachers of the deaf and people who I’ve met and worked with. So if I need help advocating, I can get that and I know where to tap into and who to talk to. And if my kids can see me advocate they can learn to advocate for themselves. So one of the differences about advocacy is something as simple as asking the teacher to wear a Mini Mic and they say, ‘Oh, you need to wear your mini Mike.’ 

LS:

That is a very big difference in recognizing that the technology in itself has changed so much and overall awareness and understanding also has changed. So those two things combined. 

So what would you say are the challenges that your kids have now? The bar has gotten higher and things have improved. What challenges would you say they’re facing or that you’re advocating for? Now that all this is available, we got to get people to adapt and use it.

JC:

For clarification, my kids are oral and they do attend a mainstream school. They do have a bit of ASL, but they mostly choose to speak. So the challenges are still in education in that hearing loss is a spectrum. If my child understands you in one room, they may not understand you in another room, my child may understand one peer, their voice but not another peer. Or even [with understanding] teachers my child may understand one teacher better than another. And that education about the fact that there’s a spectrum. My kids are growing up during a pandemic where we wear masks. I advocate night and day for clear masks. And yes, I am aware of the truth that they are not easy to wear out there. They get spit on them, they get foggy, they’re not comfortable, they get sweaty. And so I don’t ask people to wear clear masks all day. I say ‘can you wear them during story time and circle time? Can you wear them at moments where you are giving them very clear instructions and not when they are playing because I know they can lower their masks. But getting people to understand why it’s so important for them to wear clear masks is really difficult because my kids are oral and the wording is that they do well and I put that in quotes they do well and the truth is, they do do well. They do very well with the tools they’ve been raised with. We’ve worked a lot on language, both spoken and ASL and the problem is when people see that they do well. They say well, they don’t really need clear masks [because] they hear me fine. They don’t really need that access because they’re doing so well. And that is an issue because suddenly accommodation starts seeming like not as important without realizing the accommodation allows them to do well. People don’t see that they learn to figure things out in the way that ‘I see where all my classmates are going. I see what all my classmates are doing. I am figuring out how to make things work and especially at preschool age, and even my oldest at kindergarten age, is not going to show so much. But I worry about when they get to grade 2 and when they get into grade 3 and other things start to come into play in education. So I am always advocating to make sure they understand that they have access.

LS:

The idea of listening effort and listening fatigue.

JC:

Yeah.

LS:

Getting tired from listening. I love Dr. Michelle Hu @mama who hears, who has been on the show. She has the one infographic of the duck paddling furiously under the water but above the water, everything seems serene and calm. And I wonder if that’s your experience too as an adult. 

JC:

So I love Michelle as well and that infographic I know exactly which one we’re talking about. And it’s 100 percent true and I think one of the things that’s true is the duck paddling underwater that’s also subconscious. As an adult I’m so used to all these things I do to figure things out. I’m not even aware that I’m doing them and then if I think back about them, it’s like yeah, I am absorbing a lot of information.

And just to give you an analogy. Like when you think about how [the field of] audiology: [when] sound vibration comes into the outer ear, the middle ear, the inner ear, and it’s like instantaneous that you hear. You don’t realize that it’s all doing all that stuff but it’s doing it. It’s  going through a lot of process[ing]. But you’re not thinking about it. And the same thing - all the work that we’re doing. We’re not like thinking I’m doing all this work, and I’m figuring out all the things, but if we think back about it, it’s like yes, we are doing a lot of stuff to essentially accommodate a hearing world by wearing hearing devices, by speaking, by reading lips, by putting sounds and voices together. 

Your recent reel about learning about the ear. I was excited about that. Because you know I like to talk about the ear and how it works, and all the parts, and marvel at how many things are happening.

JC:

I seriously sit there in my audiologist class with my mouth open.

LS:

And that’s just the beginning because then the processing of putting all that information together at the brain level. Oh my goodness.

LS and JC:

*laughs*

LS:

So yeah, it’s very important to realize that even if kids are doing quote on quote, well, that doesn’t mean they don’t deserve all the access and ease. We don’t want things to be any harder than they need to be. And that’s an important thing to bring up. I wonder about teachers who are educated and who want to learn and do well and bring it into the classroom. What are some of the things that they’re missing? Again, I feel like this conversation is about raising the bar [and] going above and beyond.

JC:

Well, that’s a tough one to answer because there [is a chance by] stepping into when I advocate I might be asking a teacher to change their curriculum, or I might be asking them to change their goals. One of my child’s preschool teachers said she wanted to teach the kids a bit about ASL, and we can get into the whole argument of who should be teaching ASL but I’m not going to. [Instead] I’m going to say if you want to show them ASL, I bought her flashcards of ASL letter shaped hand cards so she could hold them up. Because, hey, if you want to please go ahead, but I don’t want to overstep my bounds as a parent to the fact that you were a teacher. And so we were sitting in circle time the other day, like I came in with my child; she didn’t want to let me go. She’s like ‘okay, just come join our good morning song.’ And it’s like: “Good morning. Good morning,” and they’re clapping their hands and it’s like “happy to see you.” Very simple words. Happy to see you. Good morning. And I’m like, these are really simple signs, and in a perfect world. We could collaborate with a deaf educator or a teacher of the deaf to maybe talk about how we can include some simple signs in these good morning songs instead of just clapping our hands. That’s language for everyone. And that becomes a very fine point of advocacy and trying to take over a curriculum. And that is something I’d have to discuss more with a school and that just happened very recently, like yesterday recently, so I haven’t figured out how to approach that, but there are things I see. And yeah, it would be great in a perfect world if there could be a teacher of the deaf or deaf educator on every campus to just say, ‘hey, here’s small things you can do to just add some extra language to your curriculums.’ 

LS:

I have to shout out Chloe Tompkins who is a music teacher and is hard-of-hearing and does sort of ASL combined music classes in libraries and birthday parties. But she’s got a YouTube channel. We love her YouTube videos that she has [including] all the simple singalong songs for kids, like toddlers and kindergarten age. And we really love watching them with my kids too. So she’s doing that. So when I saw that model, I know exactly what you’re referring to. And maybe that’s a suggestion - if I may - to share those videos with the teacher and say, like maybe something like this or maybe incorporating this kind of gentle introduction that isn’t like I’m telling you what to do, but let’s collaborate.

JC:

I probably would take that and send that to the school and just say, hey.

LS:

Yeah. I want to hear more about the classes you’re taking and the program being a mentor. Oh my goodness, tell us about that. My background is that I’m a graphic designer. That’s what I do. I run a small creative services business. And during the pandemic when my kids were home, they are aged 3 and 6 now but at the time they were 1 and 4; they were really young. So because a lot of my business subsided with the pandemic, I worked in a lot of event spaces, and all the events were shut down. It didn’t shut down my business, but I was able to stay home with my kids, and that’s when I decided to start Hard of Hearing Mama. The one thing that’s been clear to me is I am talking about all these things. They are my personal experience that shaped my life and it’s been fulfilling to talk about it. But more than that, to have people reach out to me and say things. [For example] I had one person say ‘you explained something that I never understood about my mother and why she reacts a certain way with interruptions. Thank you for helping me understand that. I now get along better with my mother. I’ve had kind of funny things. I wrote once about why I eat quickly because I don’t hear what’s going on around me. So I may as well just be eating, and it was a reference to when I was young. And I had a parent reach out and say I can’t understand why my seven year old eats so quickly and even though I’ve been asking them to slow down, I never thought about the fact that they might not be understanding what’s going on around them. Thank you for that. Then I have other Deaf individuals reach out to me and say I am on my journey but thank you for clarifying so much, and why I do something that I didn’t even think about. And I realized I want to talk to people more and there’s a lot of things people don’t know about hearing loss. They don’t know about growing up [or] about their kids growing up what they might be thinking. There’s a lot of people learning to understand themselves. This stigma is out there. There’s a lot of stigma out there [such] that the spectrum of hearing loss is not a good thing, or it will lessen your life quality, or something. And I’m like I really want to challenge that. It’s not to say that there aren’t difficulties navigating the hearing world and how to ask for accessibility while you’re also providing accessibility, sometimes in the form of speaking and in the form of hearing devices. But I want to work with people more directly so that they can improve their relationship. They can improve their way of thinking. And someone even said to me today, I wish I could have your outlook on hearing loss. And I said my outlook was 40 years in the making. It’s been a journey [vs] someone who more recently had a diagnosis. And like it’s okay for you to not be happy with this. And it’s okay for you to go through these emotions. It’s okay for you to feel these things. While I am proud of who I am. There are days where I’m out with a bunch of people in a noisy place. And I’m not happy with it either just because of the circumstance that I have placed myself in. So it’s okay to feel your feelings and all that. And I wanted to work with people. 

So back to the original question about a program I’m taking, it’s at Gallaudet University, and it’s to be a peer mentor for the Deaf and Hard of Hearing. The program itself is geared [at] adults being peer mentors to adults. But I do also want to work with parents of Deaf and Hard of Hearing children to help in that journey. And basically to have a credential to talk to people about hearing levels, hearing loss, deafness. And I would like to somehow change what I’m doing to focus more in that direction. So that’s why I started that program. In it we talk about the history of hearing loss. We talk about audiology, we are going to have a class down the road about personality traits, which I cannot wait. And so it’s been interesting so far. I’m in my second semester. So there’s not a whole lot that I can give beyond information of two semesters, but right now we are on basic audiology. 

LS:

It is incredibly valuable. I don’t even know the first time I heard the expression Deaf Mentor well after graduate school. Like not even within the program of being an audiologist. It may have been mentioned you know sort of in passing. But the idea that the experts on this topic are the people who have lived experience. And yes, audiologists go through incredible amount of training. And we know a lot about devices and diagnosis and testing and of course also balance and tinnitus. And I’m a very proud audiologist. *laughs* But I also think that there is not enough understanding of the limitations of the expertise in audiology and that it doesn’t carry over into what is it like to be in that restaurant and be in those situations that are difficult. And having a peer mentor or an adult for your child, right? Or any kind of setup like that is so missing to me. Like once I had this big mindset shift through the podcast and talking to so many amazing people and understanding that the experts here are not the professionals only. Everyone has their slice and there’s expertise. But parents, you’re the experts in your children and talking to people who have grown up and experienced what your child is going through is so insightful and so valuable. So if anybody out there is sort of feeling lost in the flow of information coming only from doctors, and audiologists, and speech therapists, and educators who each have a lot of wonderful things to say – don’t forget to add to that team and reach out and seek because no one’s going to hand it to you.

This is the kind of thing that in advocacy, [where] you need to seek out a Deaf mentor like really try and see what services are there to connect with someone who knows what this is like beyond the professional sort of medical, educational [advice] but also the real life experience. 

JC:

I agree with all that but I do have to add a slightly funny story in that, I have talked to a few people. And especially understanding more of the intricacies of audiology, I randomly have met a number of people lately who are like, ‘I know I have hearing loss. And so I didn’t want to pay for a hearing aid. So I just bought this hearing aid online and I did an online hearing test.’ And I’m like no! *laughs* What if you have something blocking your middle ear? What if you have conductive hearing loss? You can make your hearing worse. You need to go to see an audiologist. 

LS:

Yes!

JC:

And that’s why they teach audiology in peer mentoring. So we can say these are all the things that could possibly be happening. This is why it’s important that you see an audiologist even if you end up buying a hearing aid online, which I still don’t think is right, but at least you know your hearing chart, your hearing test, what your audiogram is. And you can make a really much more informed decision than just randomly saying “I’m not hearing well.”

LS:

Thank you. I appreciate that. Definitely, very good advice. I’m really a big advocate for people knowing what the scope is, the scope of practice, what’s within my expertise and what’s outside of. And when it’s outside of, then have a referral. But yes, definitely, of course see an audiologist. A licensed one, and if you have children, hopefully a pediatric one to really try and get exactly what you need. And absolutely get the highest level of care that you have resources and availability to. Absolutely, good point. Good point.

And another thing I wanted to bring up for our listeners is the amazing resources you have on the website of so many activities, games, toys. And how to use them from a parent’s perspective seems completely helpful. Instead of like what do I buy? How do I use these things? So talk a little bit about all those posts and how that came to be. What advice do you have for people?

JC:

I have to credit a lot of those posts to the teacher of the deaf and hard of hearing that my kids had. I will say and I will admit that when they were born, I didn’t think we needed early intervention. I’m like well, I’m hard of hearing. I mean, I know everything there is to know about it. What could I possibly need to know? It turns out [I needed to know] all the things you don’t think about when you’re a child and that includes access to language because I only knew what I knew, right?

So a lot of the activities I post are in language. I refer to them as spoken but they’re all spoken ASL or any sign language you can use to do any of those activities. A lot of them are based on work with a teacher of the deaf. In anything you’re doing, there’s language [such as] putting on your clothes, there’s language. [You can say] ‘we’re putting our pink socks on and not making it an activity, it’s fun. But in anything you’re doing that’s fun, there’s always language. So it’s a way to insert something that you want to work on. [Or] Vocabulary you want to work on. I’ve had fun with my kid, and that’s why I started the whole thing. It’s like fun and it doesn’t have to be an exercise [you tell your] child ‘say the word (insert word here).’ You know it can just be in games. It can be in arts and crafts. It can be in music. It can be in getting dressed and brushing your teeth and eating dinner.

LS:

Or the letter cookie cutters for playdough or for cookies, but I saw you also had like the silicone molds or ice cube tray also for letters. So then that’s like a whole other sensory and it’s for sure a game, but you’re also doing literacy. 

JC:

And that the thing is, when we’re working on the activities, we’re not only thinking about language, we’re thinking about fine motor skills, gross motor skills, just everyday stuff that they’re doing. And one of the things our teacher of the deaf encouraged me was to let them make a peanut butter and jelly sandwich by themselves or even when you’re baking a cake do not try to help them [as] that’s how they learn. This is what one cup is. This is what half a cup is. Let them make the mistake. You have to be okay with the mess. And if you’re not okay with the mistake, make a peanut butter and jelly sandwich. But I did a post [on this]. It wasn’t visually crafted very well. Therefore I don’t think it was read very well but it’s like how to make a peanut butter and jelly sandwich in 20 steps leaving it up to your child. Alright, we’re gonna make a peanut butter and jelly sandwich. What do we do? What do we need? We need bread. All right, where’s the bread? It’s in the fridge. Okay, well, let’s go get it. What do we need to put on the bread? Peanut butter and jelly. And where is it? And They find it. All right, are we putting the bread on the floor? No of course, it goes on the counter. And do we need to put it on anything? And they say ‘oh we need a plate.’ We need a plate. Right and how are we going to get the peanut butter and jelly on the bread? Oh we need a knife. Obviously with one of those toddler knives like a safe one. But you let them do it. You let them take the peanut butter. Whoa that’s a lot of peanut butter [or] Oh, that’s not a lot. That’s just a little bit of peanut butter. Is that the way you like it? 

That’s all language and spoken sign, and they are also using their problem solving skills and fine motor and learning where things go and how they go. So it’s a great activity: make a peanut butter and jelly sandwich in 20 steps.

LS:

That’s great. I really loved that page; it was so inviting, so colorful. And you have all the links right there. So I’m going to send people to your page now. Whenever [people ask me] ‘like what games [or] what activities?’ I’m like I know just the page. I bookmarked it! 

And I think that we don’t want to get ahead of ourselves like you [don’t] need to buy 1,000 things. Like you said, it’s all the daily things of life. And I think the most important base level thing is shared attention [such] that you are doing something together and communicating about it at the same time. That’s the deal. 

JC:

That’s exactly it. There’s always this balance. I mean, you don’t have to spend every waking moment working with your kid, but your kids want to be with you. They want to play with you. They want to do something with you. And so those little activities - like I had one about where’d the hat go? Where is it? Where did we hide it? Where should we put it? - you just said it, you don’t have to buy fancy toys. Although some fancy toys are fun, but you don’t have to. Everything you need is around you to make up games and stories and crafts. [You can even use] empty toilet paper rolls.

LS:

*laughs* That is definitely a thing that is upcycled on the regular in our home. Like one time I think that one of them was ripped or wet and it was in the garbage can. And one of my daughters is like what is it doing in the garbage. Who put this in the trash?

JC:

You threw out my toilet paper roll! *laughs*

JC:

Yeah.

LS:

It happens. Oh, I have to also just give a shout out to the idea of upcycling for a second. So many of the things that we buy packaged, are exactly perfect for other things [such as] for storage, for toys, for sorting.

JC:

I’d love to tell you about one of them. I do not have a post about this, but this is great. You know those little pouch packages with the twisty tops. 

LS:

Oh Yeah.

JW:

Those twisty tops, you probably have multiple colors of them. If you save them, you can actually draw colors on a paper and make it like a coding thing so that they have to follow the color pattern with that code that you make or you can just make a pattern and then they have to keep extending it with all those colors. There’s a lot of stuff that can go into [by asking them] what are you doing, right? 

LS:

We have so much stuff going in and out of our house all the time. So turning on a new filter to like hmm, we could use this. Anyway, I think I could talk about ideas forever because once you go into the playing, and mom the life. [As well as for] parents, all caregivers who are constantly looking for ideas, so it’s good to be inspired by each other and share what seems so obvious to you. Someone else was like ooh, great idea. I haven’t thought of that. 

I want to hear if you have a point also for our professionals who are listening [such as] some advice for audiologists, speech therapists, teachers, and specifically about them in relationship with the parents of the children in their care. There’s sort of this triangle right? The parent and their child - everything is for them and for the child and their goal. But the rapport with the parent is also hugely important for the relationship. And sometimes it can be a little tricky as a professional to be with the child and working with them but also communicating with the parent about what to do at home. 

JC:

It’s a really tricky one and it’s hard to answer. The reason it’s hard to answer is because I am a parent. And as a parent, you’re playing the role of a parent and an advocate. I don’t want to say the problem. But the blurred line, maybe, is that as a parent, we love our children while we are advocating for them and we also advocate for what we want to see from children and what we hope our children can be. When we talk about children, it’s out of love, and the things we want for them. Whereas when we’re talking to a professional or non professional, maybe an activity coordinator, they are thinking about outcomes that they may need to reach or meet. It’s almost easier for a parent to have an advocate speak on their behalf because then they’re speaking about the outcome that they want for the child. Maybe [it’ll be] from the parents perspective, but that emotion is not going to get away. And as a parent, we tend to use  emotion, and that’s where things start to get mixed up because a professional might think they’re too close to it or they maybe don’t understand the professional side - where they have milestones and goals. And then there are just so many factors and nuances in that, that it really kind of depends what professional you’re working with. And it depends what kind of parent you’re talking to and depends on the outcomes anybody wants. And sometimes you’re on the same page and it’s great and sometimes you’re not and there’s a  battle. But one thing I would say from a parents point of view because that is my point of view is that it’s okay for professionals to have the milestone. I think sometimes there’s a patient that can maybe come in and [then the professional can] repeat back to the parents what they’re [the professional is] hearing. You can say ‘I acknowledge that these are the things you are saying that these are the things you want’ [and say this] before talking about milestones or goals or even facts because when we repeat back to people what we say, and this is more of a technique I use in my client work with mirroring, they feel heard most of the time. So the one thing I would just offer to let parents know is that they are heard by [the professional] repeating what they said even if you’re paraphrasing it, and so that they are saying yes, you heard that right. And then you can kind of go into what’s gonna be milestones or the goals. Because if they feel heard, they’ll listen a bit more to what maybe you’re trying to achieve and your perspective on the matter. With all that being said there are different programs, there are different people, there’s so much involved with so many nuances. But at the end of the day, I think that small detail of acknowledging what a parent says Jive will go along with whether you agree or not.

LS:

Yes, validation. It really is such a huge part of all of our communication. Thank you so much. What a beautiful thing to offer to our listeners. And there’s also a full transcript of all of our conversations at allaboutaudiology.com.

Janna, I’m so grateful that we had the chance to chat a little more in depth, [rather] than reading each other’s posts. We’ll have all the links in the show notes at hardofhearingmama.com  for you to check out all of the resources and that beautiful list of games to play. 

And thank you very much for all of the listeners of the show and being part of the all about audiology community. You are so appreciated. I’m always here for you and happy to hear how anything we talked about lands for you, [or] any questions you have, [or] any offers or suggestions. And if you know anyone who will be perfect to be a guest on our show, you can nominate them. You can send me a DM on Instagram or through Facebook or through my website and a huge huge thank you to the patrons of the show. And if you’d like to become a patron that’s at https://www.patreon.com/join/allaboutaudiology, thank you very much. This is the all about audiology podcast. And I’m Dr. Lilach Saperstein.

The post All About Raising HOH children as a HOH Parent- Episode 88 appeared first on All About Audiology.

The post All About Supporting One Another - Episode 87 appeared first on All About Audiology.