All About Educational & Informational Audiological Counseling - Episode 63 - with Dr. Sarah Sparks

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Today’s guest is Dr. Sarah Sparks, who is the founder of Audiology Outside the Box, a new audiology telepractice. She provides clinical services to clients in DC, Maryland, Virginia, and Massachusetts along with educational resources on communication and audiology-related topics. Dr. Sparks’ goal includes wanting to “provide a space where people can get support for their unique communication needs with an audiologist who communicates in both ASL and spoken/written English.” At the end of the day, she believes that Deaf culture and audiology have a place where they exist together and it is her mission to bring about this change.

This week on the All About Audiology podcast:

1:45: How Dr. Sparks Got Into Audiology

Before losing her hearing, she was fluent in spoken English. This is a different experience than someone who is born deaf. She started to study audiology around the time she started losing her hearing.

3:25 What makes a “successful” cochlear implant hearing patient?

Dr. Sparks became a cochlear implant recipient while studying for her doctorate of audiology between the first and second year of her AUD program. Talk about a truly hands-on and practical experience!

5:30 Dr. Sparks’ early access and knowledge about The Deaf Community

As an elementary school student, she befriended a young friend in elementary school who was deaf. She feels privileged to have been exposed to such a community at an early age.

9:05: Dr. Sparks’ training at Gallaudet University

During her educational experience, Dr. Sparks learned that many assumptions she initially held about audiology were not necessarily correct. For example, audiologists in The U.S. do not only work with kids; they actually work with adults too.

13:00: What services do audiologists offer? Initially, she was a teacher, and from this previous experience, she believes that the educational aspect of audiology is not addressed enough. She thinks that audiologists do not explain clients’ diagnoses and experiences thoroughly enough to them. Though, audiologists are not always paid to tap into the educational aspects of their patients’ conditions, since time is limited during appointments.

16:00 What stands out about Dr. Sparks’ “Audiology Outside the box”

She tries to take more time during appointments. Since appointments are not always provided in various modalities, she tries to fill in for what’s missing by providing services in different modalities (i.e English, ASL SimCom or Cued-speech).

19:30: Telehealth options along with her education vs. counseling services

Dr. Sparks’ education and upcoming webinar components are accessible to the general public (i.e. through social media platforms) since they focus on general info about audiology. While, her personalized counseling services are offered to individuals clients, on a case by case basis, in locations where she is licensed (DC, VA, MD, MA).

23:15 The Medical-Audiological Model

Sign language isn’t “just an option if a cochlear implant does not work out.” ASL is its own language and not just a modality! Dr. Sparks suggests that a child should be fluent in at least one language in order to have an option to communicate and she truly believes that there is benefit of knowing sign language even if you are already fluent in a language. Technological options to communicate include: phone captioning, video phone, and voice carry over.

30:00: Key to Communication and what that looks like for those with hard of hearing

We use context clues to know and understand what is being said and to communicate. For those with Cochlear Implants, it is hard if they miss a few words from a person communicating with them. It is not realistic for you to expect that once someone receives a cochlear implant to hear perfectly going forward.

Always asks individuals their specific preference of how they want to communicate!

40:00: Educating those working with kids who have cochlear implants

It is the audiologists’ job to educate teachers, parents, friends, community members about remembering to wear the microphone to communicate with a child using a cochlear implant and to work with them and check over their progress. It is also important to work through the possible conflicts that may arise, from people not accustomed to communicating with a cochlear implant user.

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Listen Next/Related Episodes

Ep. 64 -All About The AUD Student Experience with Ina Selita

Next time on All About Audiology:

Episode 64 – All About The AuD Student Experience with Ina Selita

Transcript:

Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. And this is the show where we talk about your experience with audiology, not just about audiograms and hearing AIDS and all the things that we see as the actions, but really about your experience with audiology. And another element of this show that I really think also reflects a lot of my growth as an audiologist, is learning about the deaf community, deaf individuals and what actually is the goal of audiology as a whole.

Way back in episode 15 with Kimberly Sanzo was kind of the first time that I processed a lot of this: the goal is language, not speech, you know, and getting into the part of audiology that needs to be a little broader, that needs to encompass all the people that we can serve and not be singularly focused towards speech banana audibility, but actually what do we do with the sounds?

So, in that vein, I am super excited to introduce you to today’s guest, Dr. Sarah Sparks, who is the founder of Audiology Outside The Box, a new audiology tele practice in DC, Maryland, Virginia, Massachusetts area. And I am loving following Dr. Sparks on Instagram and Twitter.

Dr. Lilach Saperstein: “I’m really excited, Dr. Sarah Sparks, that you are here with us because I have been stalking you on Instagram. So, thank you for agreeing to come on the show. Welcome!”

Dr. Sarah Sparks: “Well, thank you for having me. I’m really glad to be here.”

LS: “I can have a long-winded introduction about how excited I am, but let’s just jump in.

So, tell us a little about your experience, your journey throughout your life and then coming into audiology. So, start wherever you like.”

SS: “Sure. So, as many people who follow me on social media, know that I do identify as deaf. I use two cochlear implants to hear, and I also communicate in American sign language in addition to English, but it’s not always been that way.

I was not born deaf or hard of hearing. I actually do not know when I started to lose my hearing, but I have a progressive hearing loss, most of which happened later. And I was already fluent in spoken English before I lost my hearing. So, that’s a really important part of my own history that I want to stay up front.

And one of the reasons for my doing that is that I very frequently encounter people who will remark, ‘wow, your speech is excellent’, or, ‘you talk so well.’ Or people will sometimes ask me why I sign or why sometimes I need to work with interpreters because I speak so well. So, I do want to go ahead and mention that I do not have the same sort of speech ability as somebody who was born deaf. That sort of person would have needed to work much harder than I ever did to develop speech in any spoken language. That’s just something that I think I should clarify from the beginning.”

LS: “Yeah. And on that, I think a lot of people have this perception of what is a “successful” cochlear implant user, not taking into account 87 other factors of age of onset and the pre-lingual or post lingual and motivation and access to mapping and their actual nerve anatomy. Like there is no such thing as one cochlear implant model patient. Everybody has their own story.”

SS: “Yeah, exactly. So, I did not actually become a cochlear implant recipient until adulthood. As I said, I don’t know exactly when I started to lose my hearing. By the time that it was identified, I had a pretty significant hearing loss already. So, there’s a lot of blanks that I can’t quite fill in, even myself. I did a lot of pondering during my first year of my AUD program about whether cochlear implants might be a good technology for me to consider for myself. And ultimately I did experience more of a drop in my residual hearing during my first year of my AUD program. So, that had me thinking about this even more.

I decided to get my first cochlear implant the summer between my first and second years of my AUD program. And that started my experience. I ended up getting my second implant during my third year of my AUD program during our winter break. So, I got both of my cochlear implants while studying for my doctor of audiology degree, which was quite an experience.”

LS: “That is something, wow! That’s a very hands-on, practical experience during the program. And also, Dr. Samantha McKinney, who is also on Instagram, @youcicanhearnow and was also on the podcast, she also got her CI (cochlear implant) during the program. So, I think it’s interesting when you can see it from both sides. But I just had a question about while you were growing up and while you were primarily using hearing AIDS, did you sign? Did you have interest in access to people in the deaf community? What was your communication modality, if you will?”

SS: “Yeah, so, this is really interesting. I did not get hearing AIDS until much later. So, I was not one of these kids who grew up with hearing AIDS, but I did have exposure to the deaf community and deaf culture. There was a child in my class, in elementary school, who was deaf and he used hearing AIDS, he signed and he talked. So, he was really my first introduction to deaf culture in the deaf community. And I feel really privileged and blessed that I was able to grow up with the knowledge that deaf people are proud of themselves and have a culture and have a language that is unique from English.

All of these things that a lot of people do not ever learn or do not learn in full adulthood, I was exposed to already in elementary school because of my friend. And that was a very special experience for me as a child. So, I certainly did not develop any level of fluency in ASL as a child. I started getting more serious about ASL in my adulthood, but that first encounter with deaf culture in elementary school was profoundly meaningful for me. And that friend and I have since reconnected, now that we have social media. So, I’m very happy that he is part of my life again.”

LS: “That’s awesome. How great is that?!

You don’t know exactly when (you started to lose your hearing), but it was towards the later part of your childhood, or I don’t know, maybe high school, college time, would you say?”

SS: “I don’t know, exactly. I grew up in an area where good health care is not exactly accessible for everyone at all times. I grew up in Eastern Kentucky, so, I believe even now, there is not a lot of audiology available in Eastern Kentucky, but certainly when I was growing up, there was not. So, I never actually had my hearing tested as a child. I only remember one time that I had a hearing screening even, and that was in kindergarten.”

LS: “Got it. Okay. So, then back to when you’re in Gallaudet. Did you move to DC for Gallaudet or were you also there already?”

SS: “I was already in Washington DC by the time that I started my AUD program. I had been teaching theology and religious studies in the Washington DC area. So, I had already been here for quite some time.”

LS: “Yeah. So, I got to visit the campus when I was considering graduate programs. It was the most beautiful campus. I was like, ‘maybe I could go somewhere where there’s grass’, haha. Because I was from Brooklyn, from New York city and I was considering it. I had a little moment. So, we did go visit the campus, but then my parents were like, ‘Four hours away from home? I don’t know about that.’ So, I ended up going to CUNY in New York city. But Gallaudet is really beautiful and they have such a unique program and so much focus on the deaf community, obviously.

You already mentioned about how your perception of what a cochlear implant user, how they identified, changed. What were the other things that happened throughout your training that affected you?”

SS: “Yeah, I learned so many new things about audiology, not just how to be an audiologist and how to do audiology myself, but I learned that many of the assumptions that I had about audiology before becoming an audiologist myself, were not exactly correct. So, for example, I think there is a lot of assumption within many signing communities that audiologists primarily see deaf and hard of hearing children and our days are just one deaf or hard of hearing child after another, after another, after another.

And really most audiologists do not spend very much time working with deaf and hard of hearing children. It depends on what kind of work setting that you’re in and what your caseload is like. Most audiologists work more with adults. If we look at audiologists as a whole throughout the United States, I’m not sure exactly how it is in other countries, but in the States, there are more audiologists who work primarily with adults than with children. And you work with people with later onset hearing losses and presbycusis than with other situations.

So, that’s something that I hadn’t really thought about before I got into audiology. Most people that I knew within the signing community had expressed a belief that primarily audiologists work with deaf and hard of hearing children. And I just hadn’t really considered it myself. But then once I got into my clinicals myself, I started realizing, ‘Oh, this totally makes sense if we think about all of the kinds of people who might need to see an audiologist for one reason or another, this definitely makes sense.’

And within pediatric audiology, more specifically, it just blew my mind when I first found out that most pediatric audiologists don’t just see one deaf or hard of hearing child after another, after another, after another. So many pediatric audiologists end up seeing children who need to be evaluated because they have tympanostomy tubes in their ears, or they are hearing children, but they have a spoken language delay, and we need to rule out hearing as being related to that. Or there are children with different kinds of risk factors; children who have family histories, somebody who’s deaf or hard of hearing in their family. So many more of those children end up coming to audiology appointments and children in other situations. And that’s something that I didn’t learn until I got into pediatric clinicals myself.

So, that’s something that I think is really important for people to know. There are audiologists who specialize in working with deaf and hard of hearing children, and that’s something that I want for myself in my career, but it is certainly not the case that most audiologists are seeing deaf and hard of hearing children all day.”

LS: “Yeah, I think you’re right. That is kind of something people think about audiologists. ‘You cure deaf babies.’ No, no, no, no, no. First of all, what’s this word “cure”? There’s a lot about public perception of what audiology is and a big part of what this show is about. Haha. We’ll break some of those stigmas down and you’ve done that so beautifully in your social media posts about various myths versus what’s the truth. What’s the facts over here? Let’s get the facts.

I’d love to hear from you about, on this vein, of what is different in audiology or what’s missing, what could be better? And what is different about your practice than most audiology practices?”

SS: “Sure. I was a teacher for several years before I became an audiologist, so education always has a place near and dear to my heart. And eventually I would like to get into higher education in audiology. I’m actually, part-time working on a PhD so that I can meet that goal as well.”

LS: “Of course you are. That’s awesome.”

SS: “The education component of audiology is something that I think does not get nearly enough attention. Part of that is because audiology appointments tend to be very time-limited. We don’t have all of the time we need to actually sit down with the person and talk and give them the information that they need to know so that they can have realistic expectations with their hearing devices or so that they can understand their hearing levels or so that they can understand the implications of their hearing levels for communication.

So, that’s something that I think is a significant need within audiology. There are of course, many other reasons that probably this doesn’t happen as well. For example, I think another thing that a lot of people don’t know is that audiologists don’t get paid based on the amount of time that we spend with a person, whether it’s someone paying through self pay or insurance. It depends on how the clinic does services, whether it’s a fee for service or whether it’s bundled services.

In either case, it’s generally not a situation where we get paid for our time and the counseling and education component is something that we typically don’t get paid for as a service, because that’s something that generally insurance does not cover. It is something that is within our scope of practice. So, of course we can provide education and counseling to our patients and we should, but we typically just don’t have enough time because of all of the other things we have to do in the appointment that actually do get reimbursed.

And it’s a very sad thing, I think, for both the audiologist and for the patient, because I know a lot of people in our profession, a lot of audiologists, who would really like to spend more time sitting down counseling, educating their patients or clients.”

LS: “This is exactly the gap that prompted me to start doing what I do and that is offering actually audiology mentorship and counseling outside of that interaction. What prompted you to start your practice, Audiology Outside The Box?”

SS: “Yeah. So, my reasons for founding Audiology Outside The Box are a few. One, is that problem of in a traditional audiology appointment and not having the time for the counseling and education. But also these types of services, when they are available, the counseling and the education are not always, or not often available to people who communicate in various ways and prefer different languages and modalities. Certainly, I think that other audiologists who offer similar services would want to provide for people who communicate in different ways, but many cannot provide direct service.

I, myself, certainly can’t provide direct service in every possible language and modality, but I can provide direct service in either English or ASL. I can also do different modalities like SIMCOM. I know a little bit of cued speech and I’m trying to improve my skills in that so that maybe, eventually, I will be able to provide an entire appointment in that modality, but for now, I’m not able to do that. But in any case, I’m very adamant that if a person wants to see me, they should have access to an interpreter or translator at no charge to them. If I cannot provide direct service in their language or modality, or even if I can, if their own preference is to have an interpreter, instead of having me provide direct service, that’s fine with me too.

I care about making this all about whatever helps the individual to communicate best. I have on my forms on my website space for people who are requesting appointments to tell me how they communicate best.”

LS: “That’s so important for the communication with your patient. We’re a communication profession and yet sometimes, you know, there’s a lot of stories of people saying I called my audiologist office and that was the only way. There’s no texting. They don’t take emails. There should be some written communication option to contact your audiologist office.”

SS: “Right. Right. One of the things that I have experienced as frustration in my own interactions with medical professionals that I’m seeing as my doctor or my provider, is that those options are not always available. Trying to get access sometimes to my own telehealth appointments with my own providers, there have been some issues with the office having my video phone number that I use for phone calls, but not having my number I use for text messages. So, in order to connect to the video call, they’ll try to send a text code to my number, but it’ll be the VP number and not the number I actually received texts at. So, there will be all of this calling between me and the office, trying to figure out how do we get me connected to this appointment?

And it’s a huge headache. So, that’s something that I think medical offices in general could be a lot more aware of and that’s something I want to make sure does not go wrong with what I’m doing. If anybody had a problem with accessing an appointment with me, I would want to know so that I could fix it immediately.”

LS: “That’s a beautiful mission to have for sure. And would you tell us about the telehealth part? Your practice focuses on this education, counseling and telehealth. Am I getting that right?”

SS: “Yes, that is right. So, I can provide a lot of different services online: client education, counseling, tinnitus management, other kinds of services that you don’t necessarily have to be in a traditional office in order to provide.

I do want to make a quick distinction between the education and the counseling piece, and specifically related to what I do on social media compared to what I do one-on-one. Certainly, education is part of what I do with people one-on-one, but providing a sort of general education about audiology topics without focusing on a person’s specific situation, that’s the part of my work that I do more publicly on social media, on the blog, on my website, through the downloadable resources that I have on my website. And also through webinars that I’m going to be providing starting in the near future.

All of those things are available to anyone, any place in the world because they are related to general audiology topics. They do not involve providing medical advice about anyone’s specific situation. But then the one-on-one services or the group services that I’m going to be providing in the future as well, those are available right now to people who live in States where I’m licensed, which would be Washington, DC, Virginia, Maryland, and Massachusetts. Those services are personalized. The person can sit with me and talk with me one-on-one about their concerns and I will determine how I can best support them if I can. And then together we can come up with a plan about how to support their goals that they have.

Everything is based on the client’s individual goals. I don’t think it’s my job to tell people what their goals should be. I don’t think it’s my job to try to encourage them into goals that I have in my own mind. It’s completely up to them. How do they want to communicate? What is it that they are struggling within communication and how can I support them in that?

And it’s not just the deaf or hard of hearing person. I think that a lot of audiologists, maybe unintentionally, imply at times that the deaf or hard of hearing person is the one who’s responsible for communicating better. When in reality, all of us share the burden of communication. Everybody can communicate better at different times.

So, part of what I do as well, is educating and counseling family members. It’s not just working with the deaf or hard of hearing person and providing tips for better communication or helping them problem solve, but it’s problem solving surrounding the entire family.”

LS: “Definitely. I love what you say about not deciding what the goals are for your clients. That is music to my ears, haha. And I talk about this so, so much on the podcast and other podcasts that I’ve been a guest on about the medical audiological model that says to a parent, here’s the diagnosis. Here’s your next step. You need to do ABCD and the parent was never even given a moment to breathe with this information before they’re already set on some path, one way or another. But yeah, I really appreciate that.”

SS: “And based on what you just said, something else that I think is important to mention is that I think sometimes we can, as audiologists imply things that we don’t necessarily mean to imply when we’re in those kinds of interactions with parents. So, for example, when I was an audiology student and I would get to observe some of my different supervisors and how they would counsel about deaf and hard of hearing children on the day that they were identified, every now and then I would have a supervisor who would say something to the parents like, ‘Well, sign language is an option if the cochlear implant doesn’t work out.’ “

LS: “Um, no.”

SS: “I think that’s an approach to counseling that some people within our professions see as being fair to ASL and to sign language, but really it’s not. I think we need to start talking with parents in ways that frame communication and language as giving the child as many opportunities as possible.

And I think we also need to be more careful about making distinctions between languages and modalities, instead of just calling everything a modality, because ASL is an actual language. It has its own grammar. It has its own structure. It has all of the features of languages like English, French, Chinese, what have you, and other sign languages of the world as well.

And that’s not the same as a modality like cued speech, for example. Cued speech, I’m a big fan of. I think it’s great. I think it can be wonderful for supporting literacy and also supporting understanding of speech sounds in general. But cued speech itself is not a language and that’s something that a lot of parents, I think, have never really had to think about what is a language and what is not a language. So, there’s certainly nothing wrong with giving your child opportunities that are supplemental, that are in addition to languages. But the most important thing is making sure that the child develops fluency in at least one language.”

LS: “Yeah.”

SS: “And that’s why it’s so important to speak of ASL and other sign languages of the world as though they’re not just modalities, they are actual languages. And they are languages that are visually accessible to deaf and hard of hearing children who have good vision and can be made accessible as well to deaf and hard of hearing children who are also blind or have low vision. There are ways to do sign language and tactile modalities and parents don’t know about that either.

So, all of this, I think we need to be thinking more carefully about the words that we choose when we counsel parents. I think it’s extremely important that we do not frame sign language as just being a backup in case cochlear implants don’t work out.”

LS: “Oh my gosh, I completely, completely agree. And I feel that there’s the big distinction that I think makes it so clear is that we talk about speech. And speech and language are two very, very different things. Speech is a way that we can use language, but that understanding that language is the goal, that language is then the basis of their cognitive development, their social development, there are opportunities for learning, that is the basis for so much. And language can be in lots of different forms.”

SS: “Yeah. Along with that, I think many parents are, and again probably unintentionally, led to believe that if a child is a signer, then that child is not also going to be a talker. This is one of the reasons, but I think it’s important for the world to see people who do both. And that’s one of the reasons that I am so open myself about the fact that I talk and I sign.

If you are fluent in a spoken language that does not preclude you from communicating also in a sign language. And there are benefits to knowing a sign language, if you know a spoken language as well, especially if you’re deaf or hard of hearing. If I use myself as an example, I cannot hear very well on the phone at all. So, if I were to use a traditional phone to make my phone calls, I would not be very successful in making those phone calls. I have used captioning on my phone before, and there are some good things about that, but there are significant delays when the person says what they’re going to say, and when the captions actually come up and sometimes they’re not accurate, they leave things out.

So, I can still miss the message with captions in some ways, or miss part of the message and not understand everything, but I need to be able to respond to it appropriately. But if I use video phone instead where I have an interpreter on the other end, I can get the full message in ASL. And if I didn’t know ASL, I wouldn’t be able to do that.

There are many people I think, who don’t know that you can use video phone in a way that is different than you signing and the interpreter signing. It’s called voice carry over, VCO. You can actually tell the interpreter that you want to talk yourself, but you want the interpreter to interpret for you what the other person is saying. And that’s how I make all of my phone calls. I am very happy with that set up for my phone calls, but that would not be accessible to me if I didn’t know ASL. So, that’s an example of a benefit of knowing ASL if you are already fluent in a spoken language and you’re deaf or hard of hearing. I can work with interpreters any time that I need them for any situation because I know ASL.”

LS: “Yeah. And for parents, I think also, first of all, there’s several months from the time of identification to cochlear implant surgery, if that’s the route. And so, within those several months, what language input is being made available to them, like we’re just going to kind of sit on our hands and wait for that event and then wait for activation and then wait for their rehab to kick in. So, that’s a whole bunch of months.

But also, what about when they’re taking their devices off when their batteries are out, when they’re at the beach and you don’t want to do the whole aqua case situation. Being fully, fully dependent on technology also leaves a child without access when that technology is not available.”

SS: “Yes.”

LS: “So, why do we have to be so either/or? Why do we have to be so strict about, okay, ASL is over there, cochlear implants are over there? The two shall never meet, hahaha.”

SS: “It definitely should not have to be either/or, and that’s also an important part of what I’m doing at Audiology Outside The Box. I want people who visit my site and who download my resources, use my services, to know that communication is a whole lot more flexible than just pick one thing and go with it, because when you really think about it, everybody communicates in more than one way. Think about all the ways that we communicate every day. And even if a person is a hearing person, think about all of the ways that they communicate throughout the day.

We might draw a picture to communicate something. We might show a symbol of some kind. We use gestures. We use body language. We use our facial expressions. All of that is part of communication. It’s not just about the mouth and the ear, even for a person who is hearing and only knows one language. So, that, I think is an important piece of this as well. Communication is a global matter. It’s not just about speaking and listening.”

LS: “Yes. I mean, we use emojis to convey so much information. Think about that. We use emojis, we text and we even use memes that have like a whole message within an image or within a GIF or Jif, I don’t want to start a war over here. It’s okay. Hahaha. So, even in that, we kind of can try to help people understand that there isn’t so much at stake. I think there’s just a lot of stigma around signing and I hope that changes. I hope we’re a part of the change.”

SS: “Well, yeah, certainly. I think there are many, many reasons for that. But one of them is that this is a more complicated topic than many people believe that it is. And a lot of the research about deaf and hard of hearing kids who sign and how they do with listening and spoken language skills and literacy skills, doesn’t look at all of the dimensions that need to be explored before reaching a conclusion about sign language being helpful or not. I think we need to consider when a child is first exposed to a sign language, how long they have the exposure, the quality of the access that they have. Exposure is different from access. Just because somebody is exposed to language doesn’t necessarily mean that they have full access to it. So, that’s an issue as well.”

LS: “And that’s on both sides. Because then when you say, ‘Oh, this child had their device on for 12 hours a day, however, knowing and recognizing six ling sounds is not completely having access to spoken language. Those are two very far away things.”

SS: “And even when someone hears and understands something in spoken language, we don’t know through audiologic testing, how hard their brain has to work to understand what was said. A really great example just came up in conversation with me and my spouse this past week, as a matter of fact. I posted it on my personal Twitter account, actually, because it was such a perfect example of this. We were having a conversation and my spouse said the word “tribal” as part of a sentence. And I didn’t catch the word at first.

And usually when my brain does this, I don’t note every single word that it goes through to try to find the right word, because it just happens so quickly. But this time I happened to remember it and I wrote it all down immediately so that I could have this example. But, my spouse said the word “tribal” and my brain went through all of these other words, trying to figure out what’s the word that was just said. Was it treble? Was it trouble? Was it travel? Was it trifle? And then finally, I landed at tribal within a second or less and I responded to what my spouse said, and I asked, ‘Would you have known that there was a word in that sentence that I didn’t understand at first?’ And the answer to that was, ‘Nope. Nope. I wouldn’t have known.’ “

LS: “Wow.”

SS: “And I figured that that would be the answer, because I know as an audiologist, that that whole process happened quickly enough that if that word had come up in a sentence recognition test that we do in the booth, I would have gotten the word right. I would have gotten the whole sentence right. And nobody would have seen all of the mental work I was doing to try to get to the correct word. And that’s something that deaf and hard of hearing people do all the time. We’re constantly trying to fill in, based on the context we have, based on the bits and pieces that we do catch of what was said to try to figure out what was actually said.

So, if we do figure out what was actually said in time for a person not to recognize that it took us a while to get it, they’re not going to have any idea. They’re not going to have any idea how hard we worked to get there. So, that’s another really important thing that we have to be aware of with both adults and children. The audiology tests that we do, give us really important information that we need to know, but word recognition and sentence recognition are not the ultimate measures of how well a person understands and processes information that they’re getting through their cochlear implants or their hearing AIDS.”

LS: “It’s definitely not a real world situation or measure. And I think about what you said that, when people communicate with someone who has any kind of communication barrier or difficulty, the patience is so very small when someone doesn’t understand you and the never mind and the I’ll tell you later. It’s almost if somebody misses your sentence, three words out of your sentence, you’re like, wow, forget it. I don’t need to do this conversation. Cause that’s how frustrating it is when you feel misunderstood and you have to repeat yourself. So, now like take some of that energy and put yourself in someone else’s shoes, even for a moment to see, wow, it must be very hard to acquire a new language when you miss every fourth syllable.”

SS: “So, that makes me think of another misconception that I think is worth mentioning. I spend quite a lot of time in conversations with people in different, but related professions who work with deaf and hard of hearing kids, or do research on deaf and hard of hearing kids. And sometimes, I’m among people who are not audiologists or maybe even who are audiologists, but don’t work directly with cochlear implants. Sometimes, I have found people who believe that cochlear implants provide either normal or close to normal hearing if the person already had fluency in spoken language, but that children who do not have fluency in spoken language and get cochlear implants, they’re the ones who really struggle.

In reality, cochlear implants do not provide normal hearing to anybody. It does not matter whether the person was born deaf or hard of hearing or whether the person was already fluent in a spoken language before they started losing their hearing. Cochlear implants will come with listening challenges and expecting that a person is going to have normal hearing after getting them, regardless of their situation, is not realistic.”

LS: “There you go. There is so much education that needs to go to the child’s teacher, to their parents, to their friends, to their community members. Anybody who has a deaf or hard of hearing child in their life, I feel like those are the people who also need a lot of guidance on what their responsibilities are to that child.”

SS: “Yeah. I think that’s a really important part of what we can do as audiologists too, to educate. It’s important to be able to talk with the child’s teacher and tell the teacher, no, I don’t need to reprogram those cochlear implants or hearing AIDS. That’s not why the child isn’t understanding you. You need to wear the microphone in the classroom or even with the microphone, sometimes the child still going to miss things.”

LS: “Yep. I just spoke with a really, really wonderful mom who told me that at an IEP meeting, they were being basically denied the services that their child deserved. And then her and her husband turned around and continued the IEP meeting with their back turned. And the people at the meeting were like, ‘uh, hello, we’re over here, what are you doing?’ And they were like, ‘Right, you didn’t hear us well? You missed half of what we just said. Well, that’s what our child experiences. So, if you think that wasn’t easy, now give me those services.’ And I was like, ‘Whoa, you did that? That is so gutsy.”

SS: “Wow, that’s incredible.”

LS: “But she was like, there’s no way to explain to people something they’ve never heard of. They don’t understand. They don’t have any experience with, unless you make them face it. And she was like, ‘that’s how we got them to understand what we needed.’ Not everyone has a mom like that, hahaha.”

SS: “Yeah. Yeah. And it’s our job as audiologists to teach people about these things. And, I really hope that what I’m doing at Audiology Outside The Box will be a resource for people to learn how to do that, to learn how to educate the other people who are working with your child or to learn how to educate your family members. I’ve worked with kids and families who, sometimes will tell me about conflicts that they have with their extended family when they go to a holiday event or something else that’s a large family gathering. And some family members who are not accustomed to being around a deaf or hard of hearing person will assume that because a child heard one thing, that they must hear everything.

So, if you say, it’s time to open the presents and the child comes running, but then the child doesn’t hear, hang up your jacket or something like that, sometimes family members will assume that the child has “selective hearing” and will be ignoring intentionally. So, discussing those things with children and their family members, self-advocacy on both the part of the child and the parents, that’s really important for audiologists to do.”

LS: “Incredible. And I’m so grateful for all the resources that you’re creating. Your social media posts are so helpful. I’ve already sent them to several people and be like, check this out. Forward this. So, definitely check out @audiologyoutsidethebox and all of the resources coming from Dr. Sarah Sparks. I’m so, so grateful for you being on the show today.

And before you go, I’d love to hear what is one piece of advice that you will give our listeners, whether that’s to parents, to people who themselves identify as deaf or hard of hearing or to students, lots of audiology students as well, who follow the show?”

SS: “I think my best piece of advice for everyone, whether it is audiology students, audiologists, deaf and hard of hearing adults, children, family members, I think the best piece of advice I have is, do not assume anything.

On the audiologist and audiology student side, I would encourage this regarding your clients or your patients. Do not assume that a person prefers a certain mode of communication or a certain language just because that’s the language that they come to the appointment communicating in. It’s possible that a person actually would do better with an interpreter in the appointment, whether to speak and have the interpreter interpret or to sign and also have the interpreter interpret. Maybe they just came to the appointment speaking because they assumed that since you’re an audiologist, you expect them to speak. So, that’s something to consider. Always ask people how they prefer to communicate, ask people about their concerns, their goals, and their needs.

And then on the side of deaf and hard of hearing people and families, I would say, don’t assume anything based on advice that you’re getting. Certainly the provider that you are seeing is giving you advice to the best of their ability in most cases, but people are imperfect. Sometimes, things get communicated in ways that are not the best. So, it’s possible that you might have at some point met with a provider who has said to you or implied to you, something negative, either about sign language or another manual form of communication or about something related to your own personal goals.

I think if you have any questions about what you were told or if something seems not quite right, you should definitely follow up with your provider for clarification or seek your own information from good reliable sources. Again, providers are not perfect. People are people and we all make mistakes sometimes. So, it’s possible that something that you have been told with the very best of intentions, might need a little bit more discussion in order for you to understand fully what is known about that topic.”

LS: “Yeah. And it might be what the audiologist is coming from one place, but that’s not right for your family. So, it’s not necessarily that they’re wrong or that they’re misguiding, but for you and your family, that’s not, what’s going to be the best. So, I feel like it’s important to kind of just put that out there that you will have three audiologist look at the same case and make three different recommendations. And they would all be evidence-based, clinically backed, coming from their perspective of what they see as most important. And at the end of the day, that’s where the self-advocacy comes in, to evaluate, did I like what I got here or do I see another provider?”

SS: “Yeah, for sure. And I just want to say, just to be entirely clear, I think our colleagues in audiology are really great people. I think that we all do our best most of the time. It’s a really good idea on the part of the client and on the part of the family to learn as much as you possibly can about the advice that you’re being given so that you can ask the right questions and make informed decisions for yourself.”

LS: “Absolutely. Oh, I love that. That’s such a good place. Informed decisions and make them yourself because you have that power. Yes. Thank you so, so much for coming on the show.”

SS: “Yes. Thank you so much for having me. I really appreciate it.”

Absolutely visit Dr. Sarah Sparks at her website and Instagram. And the All About Audiology podcast is also an Instagram. Send me a DM. I love talking with you guys and hearing, what was your favorite part of the episode? What’s your takeaways? Any questions you have and yeah, I just love talking to you guys. It’s super fun over there. And thank you so much for listening and for sharing the show.

And I do want to remind everyone who is listening, we also have a patreon. So, if you are able to support the show and help cover some of the costs of editing and hosting, that is at patreon.com/allaboutaudiology.

I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.