All About the Importance of the Parent-Audiologist Relationship - Episode 61 with Janet DesGeorges

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Hands and Voices is a parent-led support organization dedicated to providing support to families of children who are deaf or hard of hearing.

Today I am speaking with their Co-Founder and Executive director, Janet DesGeorges whose own daughter was diagnosed with hearing loss as a baby.

This week on the All About Audiology podcast:

1:46 – When Janet’s daughter failed a childhood hearing test, she suggested to the audiologist that maybe her daughter’s attention was focused elsewhere. The audiologist scheduled a retest for the following day, and Janet felt that this was a positive experience since she felt listened to and acknowledged.

6:54 – Sometimes it can be hard to accept a diagnosis, not because the parents don’t believe it, but because they can’t believe it. They might wonder if the information the doctor has given them is accurate.

9:50 – The ability to advocate for your child develops over time. The more you understand, the more confident you will be.

13:13 – When the audiologist told Janet of her daughter’s hearing loss, she felt that the news was delivered with kindness. Unfortunately, this kind of news is not always delivered with empathy.

16:22 – There often tends to be a dynamic between patients and doctors, where the doctor is the authority and the patient is expected to listen to them. Sometimes, a patient might lie to the doctor because they are afraid of “getting into trouble”.

18:16 – During one part of the hearing test, where a probe is placed in the ear, Janet’s daughter began screaming in pain but the audiologist told Janet it was normal. Janet did not yet have the knowledge or experience to advocate for her daughter in that situation.

20:54 – Although it may be just another half hour for the doctor delivering the news, the family on the receiving end of a diagnosis will remember that moment forever.

26:37 – Instead of asking yes or no questions, clinicians should ask more thought-provoking questions or even provide a list of question prompts. This will help the family get the most benefit from their appointment.

31:27 – Remember to provide your child with moments where they can just be a kid. Advocating is important, but so are regular childhood experiences.

34:23 – In the beginning, it can be difficult to differentiate between fact and opinion, and you will often be on the receiving end of both. The important thing is raising your child to be a healthy, happy communicative adult who can live independently.

38:28 – Take in as much information as you can, see if it applies to your life and child, and if it doesn’t—let it go. What works for your child is what makes a choice correct.

43:30 – As parents, you can only work with the information you have at the time. Sometimes decisions will change down the road as a child grows and begins to make their own choices.

49:11 – Advice for professionals – spend some time getting to know who is sitting across from you. Look at their chart, learn their name, and think about what they might want to get out of their appointment.

52:02 – Advice for parents – many professionals are going to come in and out of your life and some experiences won’t be positive. Don’t let the negative experiences impact all future ones.

For more resources and research visit:

All About Audiology Website

All About Audiology Facebook group

All About Audiology Instagram

Email Janet

Hands and Voices Website

Link to Janet’s book

Mentioned in this episode:

Janet’s resources
On The Ear Podcast

Listen Next/Related Episodes

Episode 30 – All About Connecting – with MamaManon
Episode 51 – All About Believing in Your Child – with Chaya Klughaupt

Next time on All About Audiology:

Episode 62 – All About The Parent Journey – Episode 62 – with Liba Lurie

Key Takeaways:

“If research COULD prove that there was ONE method, mode, language, communication for EVERY child who is deaf or hard of hearing, in whatever context, you would think we would probably know it by now. And in fact, it’s an individualized experience with success and failure across the board.” JD

“I like to use the word disbelief, because I think most people—I mean obviously your experience, I’m not putting words in your mouth—but what I’ve seen from other families is that it’s not that they don’t believe you, it’s more that they can’t believe you.” LS

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 audiology and your experiences. Not just hearing tests and hearing aids and audiograms and all of that, but your experience and how it effects your life. Either to have a hearing loss, have a child who is deaf or hard-of-hearing, whether you are a professional or you are on the side of the family or the patient. You are welcome here and I’m so excited to have you as a listener to the show.

Today, I’m thrilled to be joined by Janet DesGeorges, who is the executive director of Hands and Voices, an organization that is so closely aligned to my mission and I’m so glad to have had the opportunity to work with Hands and Voices chapters in a couple of states.

Dr. Lilach Saperstein: “I’m so excited to introduce you and learn all about you and get advice from you. So, welcome to the show, Janet.”

Janet DesGeorges: “Thank you so much for having me and like my husband always said, I never met a microphone I didn’t like. So, I’m really happy to be here today to talk about my story.”

LS: “Yeah, I feel the same. I mean just let me talk, let’s get to it.”

JD: “I know, right?!”

LS: “So, Janet, tell us a little bit about yourself, your background and your connection to audiology, the first time you had an encounter with audiology.”

JD: “Sure. I was thinking about that today. I remember the first time I actually heard the term audiologist for some reason, whatever in the moment, I thought it meant foot doctor. So, I remember being really confused. My first encounter with an audiologist was actually at the time of my daughter, Sarah’s, she was age two. She was actually in speech therapy, believe it or not. She had speech and language delays. She had had a hearing test, not a newborn hearing screening test, but a hearing test through kind of one set of processes and she actually failed that but I wasn’t worried at the time about her hearing. I was worried about some other things going on with her so, I actually forgot that she failed the screening. That’s sort of a different story.

But anyway, she ended up in speech therapy. I was sitting on the floor with the speech therapist and she said to me, ‘You know, have you ever ruled out hearing loss?’ So, I said, “I don’t think she has a hearing loss.” She said, ‘Well, why don’t we just go ahead and get her screened just to make sure.’ The speech therapist referred me to the audiologist. The next week I came back to the speech therapist and she asked me, how did it go? I said, well, I didn’t have time. This repeated itself for a few weeks. I actually talk about this encounter a lot because that speech therapist’s way she “handled” me, she was really respectful, she never berated me, but she kept at it.

Today, I think our conversation in my mind, thinking about how important relationships are between patients and clinicians or families and professionals, whatever words you want to use. So, anyway, I eventually went and took our daughter to get screened by an audiologist. We went into the sound booth, the audiologist did the test. We walked out and she said, “I think there is something going on here, we need to do more testing.”

So, I said to the audiologist, did you notice how Sarah was playing with her shoelace the whole time? One thing I know about my daughter is that she really concentrates on things and blocks out the world around her. That was sort of my story of who Sarah was by the age of two when she wasn’t responding to sound. Imagine if the audiologist said, no that can’t be right. You can’t be right, mom. Instead she said, ‘why don’t you come back tomorrow if you are willing and we’ll do the test again.’

My very first encounter with an audiologist was a pretty good one in that I felt she listened to me. We came back the next day and sure enough, Sarah failed the test again and we were referred to a diagnosing audiologist. Yeah, that was my very first encounter.”

LS: “Wow. So, I am also very impressed. Gold stars for both the speech therapist and the audiologist who recognized that this is not just a transaction and it’s actually a relationship and we need to work together and partner with the parents and the professionals for the benefit of the kids. That’s what it’s all about.

I recently just wrapped up teaching “Intro To Audiology” for undergrads and most of them are going to continue on to speech. I tell them, listen you have to take this audiology course. It’s very serious. Here’s forty five points on the final, for one question: What do you have to have before you start seeing a child for speech therapy? You must have a hearing test on file. You must, you must!!! Because you are going to work on all these other things. You have to first either rule that out or in and you just get an answer. Even if they passed their newborn hearing screening and even if there are no risk factors, if they come to speech therapy, we must put that on. And I just kept saying that week after week and they got it right on the final, yay!!!! Hahaha.”

JD: “Yeah, I love that. That’s great. That’s a good one.”

LS: “And our collaboration with speech therapists and audiologists. Everyone is working together for this.”

JD: “One thing I would say about relationship building is that it doesn’t require a HUGE amount of time. If you think about the audiology and parent relationship of a young child, we probably will only see an audiologist in the beginning, maybe weekly to monthly. And then, pretty soon, every six months. But you can establish from the very beginning this very idea of equality of partnership and relationship. But I think the first thing is being listened to and that vignette of the story of the audiologist saying to me that something is wrong here and me saying, yeah but my daughter concentrates in her world.

You know, when I looked back when she was diagnosed with her hearing loss, there were signs of course along the way. There was part of the emotional process of coming to terms with this was sort of moving through, whatever words you want to use, sort of denial, so that I could get to the beginning to accept it.”

LS: “Yeah. I like to use the word “disbelief”. Because I think most people, I mean obviously your experience, I’m not putting words in your mouth. But what I’ve seen in other families, it’s not that they don’t believe you. It’s whether they can’t believe you. It doesn’t fit. It doesn’t match with what they are seeing or their experience with their child. Especially, nowadays, teeny tiny newborns, week olds, like what do you mean? The baby cries, they startle, a few months later they babble. So, it’s not that they are in denial, nope, I’m not taking this in, just putting on the big blinders. It’s more like HOW can I believe you? I’m not sure. What did you do? What was the testing? This whole automatic stickers thing, ABR, like what did you do? And how do I know that what you are telling me is accurate?”

JD: “That’s beautiful. I love that. I’m going to steal that.”

Both laughing.

LS: “Absolutely.”

JD: “Come to a conference some time when I’m speaking and I’ll use that. I love that. It is interesting, the words we use often begin to define or sort of reveal our attitudes sort of in relation to that. I think about all of the different audiologists that our daughter utilized over the years. Sometimes we had both educational audiologists, clinical audiologists. Sometimes our insurance coverage changed so we had to switch our audiologists. So, our experiences of course, is kind of all over the place. But I would say that almost every experience that I can recall or think, our daughter is in her late twenties now in the professional world and I think how can I remember some of these instances so clearly? It’s because there was so much emotion attached to them. So, I have a lot of stories in my mind about their families that I’ve met over the years that begin to help me think about what true partnership looks like.”

LS: “I would like to hear some of your stories. The way I think it’s good to set the stage for parents, especially new parents on this journey, on this path. Sometimes it’s going to be great and you are going to have someone that you really relate to, that respects you, that has time for you. Other times, you are going to have to advocate and it’s not going to go so smoothly and you might not feel heard and you might feel dismissed. Whether or not the intention behind it is to, I don’t think anyone goes to work thinking, who can I bother today? We are all in kind of in a service oriented. We want to do our best. But it doesn’t always match up with your expectations. You know, people wake up on the wrong side of the bed. That does happen. Hahaha.

So, tell us some of the good, the bad, hopefully not too much ugly.”

JD: “I’ll even tell you the end of the story which is, as a parent and for parents who are maybe newer listening to this, your ability to speak out and advocate for your child does come a bit over time. You begin to understand and have confidence in your own understanding of your child. It’s cyclical because where I got that from was some of the good professionals early on in our life. We use the word “empowerment”, this feeling of them being across from you saying, you are going to be the one that will have the most knowledge about your daughter.

One of our profound moments and I think this is true for all parents at the diagnosis of hearing loss. We went to into an audiologist office. I had never met this woman before and my husband was at work. We had been through several screenings before but for some reason I remember thinking, why didn’t I have family with me. When I made the appointment, nobody said to me, you might want to make sure to have someone with you. For me, I was just kind of going through a series of appointments. Sarah was the youngest of three kids, all three under the age of five.”

LS: “Fun times. That’s actually my family as well. I have a six, four and two year olds. They are a lot of fun. I’m in that story, hahaha.”

JD: “You can put yourself in my shoes for sure. It’s interesting because I’ve actually heard audiologists over the years talk about how the bearer of bad news will never really make a true good partnership or relationship with families if you are the bearer of bad news. I don’t think that’s true at all. I think honestly, sometimes it’s kind of uses and excuses when professionals don’t know how to create good relationships with the families. In our case, the audiologist, the appointment itself, I don’t remember a lot about it but I do remember the audiologist coming and I do remember to this day how she began the sentence as she was sitting down. ‘This is a really hard part of my job’ and she went on to tell us that our daughter had sensorineural bilateral congenital hearing loss. How many years did it take me to say that?”

LS: “Hahaha. That’s so good.”

JD: “She asked me whether she could put me in touch with the next people I needed to be in touch with. Would I give her permission so other people could contact me. Within days on my phone, I had little sticky notes from the people who began to contact me. I always appreciated that because it was nice to have someone to kind of help me into the “system”. But I do remember my first emotional reactions, standing outside afterwards with Sarah looking down. Her life hadn’t changed but I, of course, was consumed with guilt.

Sarah was two years old and I was thinking, how could I possibly as a mother not know this about her. How am I going to tell my mother in law, she thinks her granddaughter is perfect. I had to go home and relay the news to my husband and he had a million questions. I didn’t get any written information and I couldn’t really remember so he was frustrated. But in general, that relationship, that initial relationship with that audiologist, because I feel in retrospect she was kind with the information, she was there for me.

I have heard families share their stories. One family told me, they were from Russia. They were going through the testing with their son and were standing in the hallway. The doctor walked up to them, handed them a paper and said, your son is profoundly deaf, turned around and walked away. So, if you look at all the ways that this news is delivered to families, families have all kinds of stories. Every family will remember the moment. I think kindness, I think being there (is important).

I do remember our audiologist sort of sitting and waiting, not just keep throwing information at me. One thing I will tell audiologists, audiologists will often talk about how they don’t want to give families too much information. They need to process this emotionally. Or they will give everything and then families are overwhelmed. And then I always say, when people ask me how much is too much or how much should we give, the way to find out is to ask the family across from you. Are you giving too little or too much information? And let families kind of guide that process.”

LS: “That is so powerful. I often, when I talk to other audiologists about this too, I’m like do you talk to people in your life? Have you ever had a conversation that was challenging besides for this? We have those tools, we’ve had difficult conversations, I think. I don’t know. But maybe we make this a whole big thing, like how do we do this. It’s impenetrable to learn how to deliver this news, when it’s going to depend on who is in front of you and what they know and what they don’t know. It’s going to depend on how many testing appointments they’ve had. Are they ready or not? Have they had other family members who are deaf or do they not?

I remember a story where I had done an ABR (automatic brainstem response). It was profound. Absolutely no responses on the ABR. As an audiologist, you are going higher and higher and raising and raising and there is no response. It’s kind of, okay, here it comes. And then I sit in front of them and the mom was like, ‘is it profound?’ I actually was helping another audiologist. I had just walked in and didn’t get the full case history and that honestly wasn’t such a good setup. But she was like, ‘yeah, this is our fourth kid.’ They had three children that were profoundly deaf, this is number four. She was like, ‘yeah I have a surgeon and I have his number in my phone’. She was like, just give me the results. Pass me the paper. So, that’s a totally different story then sometimes you are dealing with a mild hearing loss for someone and it’s earth shattering news. And it is, for them.

So, the audiogram is nothing. The person, the family, the kid, that’s what’s happening here.”

JD: “Yeah. That’s really good. And some of the dynamic going on, I like how you sort of asked that question. Why wouldn’t we understand that this is a conversation between two people. I think, part of the dynamic is the role, this idea and in different cultures you have listeners from all over the world, there is different dynamic set up about the physician and the patient and people’s understand and beliefs around that, that the patient is expected to listen. The physician is expected to be the authority on this and any crack in that would somehow would be perceived as lack of expertise of the parent.

So, I think the dynamic, kind of a tight rope walk, is you do want the person across from you who is a professional to look like they are competent. And yet, honesty, this goes in a little bit about parents feeling the ability to ask questions and get honest replies from the professionals that are serving them. You can tell when you ask them a question and they kind of fake it because they don’t really know versus a professional who would really be honest, where they can say, I don’t really know the answer to that. Let me find out and I’ll get back to you.

One example of why this is important, there is study after study that parents are reporting to audiologists that hearing aids are in their kid’s ears more than they actually are. Now audiologists have the ability to test it and they can monitor the hours of use. I remember the first time I heard that that was coming out, I was like, oh crap. How long are you keeping your child’s hearing aids in? Oh yeah, all the time. Hahaha.

I have a friend who her ten month old, she said yeah, I could get my son’s hearing aids in all the time as long as I’m sitting across from him in his little chair, and I don’t do laundry and I don’t take care of my other children and I don’t feed my family. So, the relationship is built on trust.

So, one of the stories that’s really hard for me in my life, was a moment we were in an audiologist office. It wasn’t the first encounter we had with this audiologist and I just always felt that feeling of not quite trusting and I don’t know exactly what it was, but that particular day, she wanted to an ear probe on our daughter. The minute she tried to do it, Sarah started screaming saying that it hurt. She told me, I had to hold Sarah down. She said, this is how it’s done and we have to get this done.

I remember it so vividly because maybe if it had happened two years later, I would have said, no, this should not hurt. This is not how it’s done. But I didn’t know, so I complied with that and I still remember my gut instincts saying this is not right. I should not be doing this. And yet, I let the audiologist do that and really caused my daughter pain. Later when I asked anyone else, they said, no it should not have hurt like that.

Another time where an audiologist did the hearing test and then Sarah was about eight, she said, why don’t you go out Sarah so I could talk to your mom. My heart started pounding because I thought the audiologist was going to tell me something really bad and this happened to be a space where there was glass and Sarah was actually on the other side of the glass and you could see the look of worry on her face. But the audiologist sat back in her chair and she said, ‘well, everything seems to be okay.’ And I’m like, why did you send my daughter out of the room?

I think every family has stories of this idea and those kind of stories to me are reflective of the equality of partnership and the way that the audiologist would be able to ascertain what that means to the family across from them is by asking them questions. By saying, do you want your daughter here or want them out while we talk about this? Things like that.

LS: “That’s so powerful what you shared. Because someone else might say, those things are so little. They are so insignificant. That has nothing to do with the clinical care. But it has everything to do with the clinical care. As an audiologist, you realize things like if you come out of the testing booth and you check your phone or check your texts, I remember very consciously not doing that. This is not boring. This is not like, I finished this, now I have to check on other things. For the family, this half hour is significant. They will remember this years and years later. They are anxious, they want to know what is happening and for you it’s your next half hour of the day. You have to be conscious about that.

What you said before, about the cultural aspects, for sure in different cultures and different countries will have different power dynamic with authority and how much people can say. But even within that, there is always a little bit of extra room of who is the squeaky wheel and who is going to ask a question or just accept everything.”

JD: “Absolutely. I have had the fortune of meeting families from all over the world from a lot of different cultures where you could sit down and look at the power dynamics culturally and yet when you talk about kind of that room, I have also in that context, families understand that they are the ones ultimately that are going to lead to their children’s success or not. Especially when they have opportunities to be around other families, they begin to understand their role as parents. You were talking a little bit earlier about the appointment itself, what the appointment meant to me and you as a clinician. That also leads to what’s going to happen during that appointment. Clinicians often have, okay today is a hearing aid test. We are going to test hearing aids, we are going to this test and that and I have twenty minutes, it’s pretty clear from my boss.

I think from this, one of the important things to understand is that it’s important when families come through the door to say what is it that YOU want or need to get out of today. That really sets a great thing because often, just saying, do you have any questions at the end, isn’t exactly the opening that that family needs towards getting to the real questions. Sometimes, the question is, I haven’t been outside of the house, because I am getting asked in the market, what are those things in your baby’s ears and why would you put them on your baby’s ears. Things like that.”

LS: “What do you mean? It’s just air pods. Doesn’t your baby wear air pods? Oh please. Hahaha.”

JD: “That’s right. Those are the kind of things when you can come into an appointment and there is actually a great resource called the what else checklist for audiologists that was developed by both parents and audiologists talking about what are some other things an audiologist should think about before, during and after the appointment besides maybe the clinical work that you are thinking about and having to do. I can just tell by your personality that you are one of those people that have some of the natural gifts towards relationship building. I would say that for audiologists who find that difficult can learn and grow in that.

So, I’ve seen audiologists really move from that idea where I’m supposed to be the expert and that’s the patient who should just listen to me, to real listeners of people’s stories and understanding that it’s not about if the patient will comply with my treatment recommendations versus how can I create an opportunity in this short visit to make sure the family has ownership. I can tell you it’s not going to be as effective of just telling parents what to do, as meeting parents where they are at so that you can get through some of the barriers and help parents move forward.”

LS: “Wow. I’d love to hear your take on this issue, I guess, which is, there is such a limited clinical time and there are very important clinical things. You need a booth to do a hearing test and you need software and all the other tech gizmos and gadgets that we have. All of our wires. And so there is a conflict from the clinical side of time, especially in a hospital setting where you really have high volume. At the same time, you want to still incorporate these things. I have thought that there could be room for those other things to happen outside of the clinical encounter.

Some of the work that I do is one on one, personally, like this on zoom with families around the world and then I do talk to them about their relationship to their mother in law and how to explain this hearing loss to your child’s teacher. And we do that counselling as a separate tangential element to their care. And I think that we do want to integrate it and it would be amazing if every clinical encounter included all of this. But it also doesn’t necessarily have to and you can get support from Hands and Voices and other support organizations and peer groups and audiologists who are doing counselling and informational counselling outside of their role or educational audiology outside of the school. What are your thoughts about that?”

JD: “I completely agree with you and before we leave the clinical moment, those thirty minutes, I think you can, by establishing trust in relationships, it’s amazing what you can get even in a short period of time. So, I think it’s always worth the effort. Some really simple things like not asking yes or no questions and asking probing questions that require the family to think about and talk about. Giving families a list of questions they might want to ask you. There are some good tools out there. The question prompt list that was led by Dr. Chris English, we have other resources that we do.

But back to your point, if you think about what families need and where they get it, I think of five major categories which is: family to family support, deaf/hard of hearing to family support, there is nothing like hearing it straight from people who have experienced it to get some insight. Professionals in our lives, including audiologists and the other network of professionals, our existing community. We don’t come in to this as a blank slate. Some of our support, often comes from religious family, other places, and then information and resources. Podcasts, books, all those kinds of things. Look at that breath of where we can get support. But I think the important part about that is are audiologists connected to those other things so that you don’t take it upon yourself that you have to give everything the family needs to get them where they need to go.

I’ve had the privilege of being part of an interdisciplinary audiology clinic where they had me as the parent there to do parent to parent support in the clinic setting throughout the family’s day, where there were a lot of different eyes on that family. That was a pretty powerful experience of just being with families as they moved through professional appointments throughout the day.

One example of that, is that one family came in and all morning they had been with all the other different professionals and we had sort of a clinic meeting at lunch and I was getting ready to meet the family. The family is just so quiet, they just won’t ask any questions. They are pretty passive. I don’t know how involved they are. They just don’t really have much to say. So, look, I’m a parent, I’m not going to give you any medical advice, I’m just another parent who has already been through it. So, I said, ‘Do you have any questions?’ The mom leaned forward in her chair and said, ‘I have so many questions, I don’t even know where to begin.’

So, here was a mom that couldn’t quite in the context to those other meetings bring herself forward because for whatever reason she felt connected to me as maybe a non-authoritarian. She was able to start pouring out her heart about the questions she had. So, yeah, I think it’s important for families to know that you are going to get really good information from that broad base of professionals, other deaf or hard-of-hearing adults and their families. And then for professionals, wherever you happen to land, to make sure you know where to send a family to a good family to family encounter or to deaf or hard of hearing adults who know how to share their story without telling the family what to do or what they think that family should do, is really important.”

LS: “So having the right referral network?”

JD: “Yes.”

LS: “You mentioned that right at the start that your audiologist said can I get you in touch with the next person in this chain to tell you that you are not alone. Then you had all those post-its which I think is such a great visual. Post-its around the phone, I don’t think we have that anymore.”

JD: “I don’t think so.”

LS: “Little text message bubbles. Haha.”

JD: “I’m aging myself a little bit, yeah. Hahaha.”

LS: “I don’t know, millennial audiologist over here. But I think definitely we can do more in the way of connecting with your community and I also worked as an educational audiologist for a bit. And for me, that was very eye opening to say, oh, this is what community engagement looks like. Meeting the parents five times over the year, at the beginning and the holiday party and this night and science fair or whatever else. I know these families in a very different way then when it is a clinical patient encounter. So, I was like, oh I see now. You could just say, oh you need an FM. But I was there in the classroom teaching the teachers how to use it and why it mattered. So, there are different roles that different professionals would take. Even bigger, the teachers, teachers of the deaf, their other team. Even their OT (occupational therapist) and PT (physical therapist).”

JD: “Yeah. You know, sometimes it’s okay for the family to ask the exact same question to all those different people because you get a little different perspective. I was just gung ho with Sarah when she was about eight with education, making sure she had access and I was like the advocate in the classroom. I have this deaf friend that said to me, ‘I don’t really remember the projects I did in elementary school. I just remember being in the girls bathroom with my feet up, hiding from my next speech therapy appointment, or whatever.’ That just sort of went to my heart, and I realized I need to let my kid be a kid. This can’t just be about if the FM is working and are people using it. It was just that one little snippet of a story that always stuck with me as well.”

LS: “Trauma informed.”

JD: “Yeah.”

LS: “Trauma informed parenting and trauma informed clinical care just to say how is this child feeling in the moment and what are our goals, which one wins out. There’s a reason we want them to use the FM and that reason would be to have access to communication, access to education and to develop language. But what if that in itself is hindering those goals. Now you have that question.”

JD: “It’s always complicated. And I think in general when it comes to accessibility and technology and education, it’s something families really do need to advocate for and have a pretty clear understanding. I think one audiology experience I had was the audiologist asked me if I understood background noise. I didn’t even know what she was talking about. I just assumed that what Sarah’s audiogram said was pretty much how she heard throughout the day. So, I didn’t really have a sense of the difference between what Sarah was receiving in a quiet classroom versus the cafeteria.

So, we were having this conversation and the audiologist said, ‘come on in in the sound booth and let me just show you a little bit’. She put background noises and had Sarah answer. I was just sitting there and I can see how much Sarah was struggling with background noise and how that understanding and knowledge really helped me understand that. I can’t just send her to school without advocating that she has good access in whatever environment she’s in and that was kind of a result of someone asking me whether we wanted to use the FM system at school. And I said, I don’t think she really needs it. It was that understanding and knowledge of what the impact of background noise was. That really helped me.”

LS: “She demonstrated it so that you understood and internalized and didn’t just get the data. Like, well the data says, the research says, but okay, so? I want to know what that means for my kid. Implications of their functioning. So good.

And then, one of the things that I really appreciate about Hands and Voices is in the name, which is about being open to all modalities and roots. One of the big points of tension that families come in this whole story, is kind of some of the politics and some of the very loud voices on their Facebook in either direction that are just like pop in and say, ‘I’m new here, what do I do? This is all new.’ And then the comment section is like, you better not do THAT or THAT. This is bad, this is terrible, this is worse and it’s like, woah everybody. What’s some of your advice to families who are in that stage and how to deal with coming into this new world?”

JD: “Yes. I think one of my first aha moments was, oh everything that everyone says to me may not necessarily be based in thirty or forty years of research. It may just be their opinion. But as a newbie, 90 to 95% of parents are hearing people and don’t have a lot of background in this and everything everyone said to me, I took at face value. In fact, it happened to me in a single period in a single workshop where one person came up to me and said, if you ever sign to your child, she’ll never learn to speak. Someone else said to me, if you don’t sign to your child, she’s going to grow up and leave you and hate you. It resulted in me being in the bathroom sobbing. This was like my first encounter actually at any sort of conference of hearing loss or deafness. Someone walked by me in the bathroom and said to me, you shouldn’t be crying. Deafness isn’t a bad thing. I remember saying, I’m sorry. Okay, I won’t cry. And then somebody else who walked by, put their hand on my shoulder, and just said, ‘everything is going to be okay.’

It’s funny that I remember that moment in the bathroom but to answer your question, look if research could prove that there was one method, mode, language, communication for every child who is deaf or hard of hearing in whatever context, you would think that we would probably know it by now. In fact, it’s an individualized experience with success and failure across the board. If you start saying that the only way to success is for all children to have their base primary language as American Sign Language or sign language, whatever context or country and that is the only way to success or that we’re living in a hearing world and the only way a deaf person can be successful is through hearing, listening and talking. You’re missing the diverse, rich experience of deaf or hard of hearing healthy and wonderful adults across that spectrum.

For me as a parent, what brought me freedom was for her to be a healthy, functioning, communicative adult who could live independently and had a healthy sense of who she was. As I began to meet successful deaf and hard of hearing adults across the spectrum, I began to be less and less consumed whether she would “talk” or not, whether she could talk or listen. Because honestly, as a hearing person, that was probably my first question. Is she going to be able to talk? That wasn’t a question of modality preference as much as my only understanding of language was like. You talk to your baby and then they start talking. That was my language question really. But as I emerged through good supports through a lot of different professionals, my goal, I began… When I say I, I always need to mention my husband, he did apparently play a part in this journey, in our decision making process.

But what I would tell parents is, take in as much information as you can. Don’t get caught in the idea that those either maybe will even tell you what to do. Just have the freedom that somebody might tell you something and just say, you know what, I’m going to take that and handle it and I’m going to look at it and say, does this apply to our life and our situation and with our child. If not, I’m just going to let it go. I think it’s good to listen to people’s stories but overall, finding your way to language success.

I remember being really struck by someone who said, ‘It’s not really about whether my child can say it or sign it but can they wake up in the morning and explain their dream to me that they were dreaming’. To me, that stuck to me as a deeper level language processed conversation. So, it wasn’t just building vocabulary words but it was like, will my daughter acquire language, the rich experience of fellowship and friendship and our family will we be able to talk about politics and religion. Trust me, we are able to around here. We have a really diverse family in those ways.

So, the idea that we are going to get to success and the modality and the language or the technology by which we get there is important and imperative because it will lead to the pathway of success but just being open to what is going to be, what is going to work for my child? That’s our motto at Hands and Voices. What works for your child is what makes the choice right. Yet, I, as a parent and the decision maker early on had to have the experience of people around me who gave me the freedom to kind of explore and begin to understand what it would mean for our family and for Sarah.

Honestly, this is never a one decision moment point. You have to start somewhere. People will say, don’t put so much pressure on the parents. Let them do it all and figure it out. I’m not trying to be in a way sarcastic about that, but that in itself is a choice to use all different kinds of modalities or methods. So, I think at Hands and Voices, I have experienced families across the spectrum who pretty much went out the gate, didn’t know deafness but had an affinity towards American Sign Language and signing and just went that route, all the way to families who really chose using listening and spoken language and did not incorporate sign language at all and found success. And then, of course, everything in the middle.

I think for me, at that particular time, both freedom and fear ruled me. I was afraid to make the wrong choice. If we make the wrong choice, then Sarah will be a failure. We’ll be a failure as parents. The freedom part for me was, no choice is set in stone! You’re going to find your way. And the beauty of it is, you make the best choices you can based on good information and input and then this beautiful thing happens. Your child begins to emerge and have something to say for themselves about what’s working for them.

So, I’ve loved the journey of that. The part that the audiologists have played in my life with that was understanding in context to technology, whether and how technology was working for Sarah and being able to listen. Transitioning from audiology appointments being about my interaction with the audiologist to primarily the audiologist’s interaction with Sarah. That is a little bit of a transition. Because you move along, and you are the decision maker, and people are asking you and looking to you and they need input from you on how your child is doing. You sort of getting a sense in that seed and it is the parent that understands that that seat was never for them in the first place. It was for them until their child can take that on for themselves.

One audiology encounter really helped me with that and that was the audiologist modeling in an appointment for me this sort of drift from asking me all the questions to really asking Sarah the questions as they were going through the hearing aid usage. I’m one of those people that do remember a lot of moments in our journey. Being in that audiologist office and kind of just sitting back and realizing, it’s more important that the audiologist hear what Sarah has to say than what I have to say. I was kind of biting the urge to actually talk. But I do remember that encounter and then subsequently realizing, oh, audiologist appointments are really for Sarah to make sure things are working.”

LS: “Okay. Listen, everything you just said is just so moving and about taking all these years, this whole long experience and all those families you worked with and coming down to say, there is no right answer people. Haha. Even when you have made the decision that does work for your family and does fit with your values and your goals, well, maybe you’ll change it in a few years when they have their input and they want something else. Maybe a few years after that, when they become adults, they might say, ‘that didn’t work out so well for me.’ But you did do what you knew at the time.

One of the strong images I have of you in that bathroom, where one person said this and one person said that, and you cried. That’s part of it. You’re going to cry. This is a very overwhelming big decision. Here’s the truth for everybody: Parenting is this thing that you don’t know the future. Hahaha. But when you have this experience specifically in the deaf or hard of hearing community, you at least know the questions. Whereas, generally, you might not know which questions you are asking because you are just kind of juggling everything all the time. Here, there is more focus on what’s language and access and connection. So, it’s an interesting place to be.”

JD: “No, you are right. I’m resonating with what you are saying and thinking about how I often talked about that transition stage where Sarah was moving from really us as the primary decision makers to beginning our partnership with her to help in context for her age, kind of understanding and helping her process things. Then to stepping back. I often say, ‘by the time I figured out all the context for this experience, cultural, identity, technology, language, speech, the spiritual context for this, all of the sudden she had to go through that for herself and begin to define what this experience is for her’. And what a joy.

To me, our experience of being able to do that, stemmed from the early days that we did not get stuck in that idea that the answer is back to the communication methods or modes or languages. Like the only way to get success is A, B, or C. Some of the bad stories that families will tell about the professionals sitting across from them and those professionals sitting in that, in their seat, as a professional telling a parent that their only choice is “this”. You must get a cochlear implant for your child. Or when a parent is visiting a school and the school is telling them, ‘if you send your child to a mainstream setting, they will be isolated and lonely for the rest of their lives’.

Neither of those things may or may not be true for a family or a child. The really difficult things for families, is when a professional says it, it does carry weight. Especially early on. I’ve always said, ‘the ability to manipulate a parent early on is pretty easy because we are living through a lot of fear and trying to get the information’.

I love audiologists who are unbiased. What I mean by that is, you would think that audiologists whose job itself is to bring technology and audition to the world of children, that is their clinical expertise. That’s why we go to those professionals. And yet, I do believe that audiologists can settle in their minds and hearts in their philosophy and the way they interact with families is that at the end of the day, their clinical expertise will be applied to that particular child in context with the families’ decision. And families who have had to hide from audiologists that they are signing with their children, those are the kinds of stories you just go, the world is not right if this is where we are at with families kind of having to navigate that.”

LS: “Wow. Context is everything. I think another analogy for our entire conversation today is also something many people go through in pregnancy. Where you are going to start to hear everybody’s horror stories of their 28 hour labor and this thing and that thing, and emergency this… And all of the people who kind of had a pleasant, smooth, supported birth, they are not necessarily sharing their story that loudly because they are just fine.”

JD: “Yeah.”

LS: “And you are going to have professionals who say, epidural is a must. And other people will say, don’t you dare use medication. This is not the first area in the world where there is conflict among professionals. So, it is also part of your journey and some people are high risk and some people it’s a multiple birth. There are other factors that you are juggling in decisions like that. That’s maybe an analogy to carry for this where there is an openness that you get to have in the world.

Oh my gosh, Janet, I think we could talk for like three more hours.”

JD: “Alright.”

Both laughing.

JD: “Just kidding. It’s always about how long can the listener listen. I’ve often thought to myself in rooms where people are, I’m like I bet I could just keep going for eight hours. And then I’m like, yeah, but I think the audience would leave before I’m done.”

Hahaha.

LS: “Okay. What I will ask you, our final question here, even though we’ve been doing this all along. I would like to hear if you have any pointed advice for our listeners both on the family side and the professional side and what you wish more people would know.”

JD: “I’ll start with the professionals. I think in general, almost every professional I’ve met, and you said this earlier, isn’t doing this and getting up in the morning and say, how can I cause harm in the world today? Honestly, you are doing work, especially in pediatric audiology or across from families and the idea that you want to help them. So, I think have the freedom to individualize your work with families by spending a tiny bit of time knowing who is across from you.

It drives me crazy that often clinicians go through their day and they don’t even know the person’s name, the next patient’s name. You don’t even take the time and look at who’s coming in next and asking that parent, how would you like to be called today and not calling the parent “mom”. Sorry, that’s a little of my pet peeves. ‘Hey mom…’ I remember the first time a professional did that and I thought she was talking to her mother and I’m like what is she talking about.”

LS: “You’re like looking behind your shoulder, like what? Hahaha.”

JD: “Yeah, so I would say the way you individualize is making sure you know the families. You’ve looked at the charts. I know everyone is super busy but just settle that in your mind, in your profession, in your career that you are going to take the time to think about what the last encounter was. By looking at one of these checklists and say, today I’m going to ask the family when they come in, what is it that you want to make sure you leave the door with? You can do that really quickly. Just individualizing care.

Being honest. That will take you a million miles. If you don’t know the answer to a question or even if they ask you a pointed question and it’s an opinion question, don’t automatically give that answer as a fact. Just say, ‘in my clinical opinion…But you might get some other advice.’ Things like decision making around communication modes or not. Families will ask audiologists, do you think I should sign with my child or not. I don’t think audiologists should answer that question. I think they should say, I think that’s a good question for you to explore. I can tell you what I know about technology questions, but let me give you some other people to talk to about that or whatever. So, honesty would be one of the things.

Individualizing. For families to know that many professionals will be coming in and out of your life and that the constant, as your child is growing, is you. Take every experience good or bad and when you have a bad experience, don’t let that become the pillar in your life. Learn from it. Say to yourself, I’ll never that happen to my child again.

I remember a dad called me on the phone once to Hands and Voices and he said, ‘We’re thinking about firing our audiologist. Do you think that’s okay?’ I remember the way he phrased that question and I’m like, oh yeah, we’re the consumer. We have that right of being able to do that. So, for parents to understand and know, build your knowledge, know your child better than anyone. When you know your child, stand up for them. The person watching you the most, is your child.

A mom told me a story the other day that her son kept complaining in first grade that he kept hearing music through his cochlear implant. The whole team came around him and the psychologist suggested that maybe he needed to see a psychologist and this mom trusted and believed in her son and also knew her son. He was a kid with extra special needs and she would just not back down. She knew that there was something to this, that it wasn’t a psychological thing in her gut. She went to her clinical audiologist and sure enough, the cochlear implant was picking up a radio station or something. Her son was not crazy, she was not crazy. So, parents trust your instincts. Learn from others. Be open to others who are not like your child. If you only use spoken and listening, don’t be afraid to listen to the stories of deaf adults who only use sign language and vice versa. You just take the stories of people’s lives and then you can put them in context. That’s my advice for families.”

LS: “That’s great. I love that. I think the thing that I sometimes offer is that as audiologists, you do not try to make the patients or their families into audiologists, they are the family. And to the family, this person who is your audiologist is not coming to your barbecue. They have a role. There are different roles here and we work together. You’re the expert in your expertise of whatever you trained in: teacher, audiologist, speech pathologist, doctor, whatever. And you’re the expert in being the parent, that kids’ parent. There are two distinct roles here but yeah.”

JD: “That’s beautiful. That’s good.”

LS: “I’m so grateful and so excited to talk to you. I feel like, have you listened to the show? You’re taking all my lines. Hahahaha.”

JD: “No!!! And that’s how I felt about you and I don’t usually say that about audiologists, so take that as a compliment.”

LS: “Hahaha. Thank you, thank you.”

JD: “I have a story I’d like to close with. To me, it epitomizes sort of the full circle our family life has come in. Our concept and context of the deaf experience in our daughter’s life and our own lives. I don’t always mention that I have two hearing daughters, but my middle daughter was pregnant at the time and we were all standing in the kitchen about the birth experience and that the new baby was going to be screening for hearing. So, I jokingly said, well, if I miss the birth, that’s alright but do not go down the hall to get the screening until I’m there because I really want to see what they say and do.

So, we were laughing and here’s my daughter Danielle who was almost nine months pregnant, just glowing and getting ready to give birth, our daughter Sarah who is deaf was standing there and we were all part of that conversation. Danielle looked over to Sarah and said, ‘wouldn’t it be great if my baby was deaf?’ You should have seen the look on Sarah’s face. I still get emotional about it. If you’ve heard me talk before, I’ve been telling this story a few times because it still comes back to me that moment in our family’s life that deafness has not diminished our world or our lives or our family. In so many ways, it enhanced it. I’m not taking away the hard days that have happened for my daughter’s life and some of the struggles and challenges she has, and yet, at the end of the day, this life journey isn’t something we would trade for the world. I love the reflection of that in my hearing daughter’s voice. I’ll leave today with that.

That is amazing. Okay, so we have to do a part two I think about how you instilled that in your hearing daughters and the balance of the siblings because one gets services and one has something about them and the other two dont. I want to pick your brain more. Hahaha.

I would love to do that and I would probably start with my biggest regret in my whole life’s journey is some of the outcomes that have happened in the sibling relationships. So, it probably might surprise you that it would be a failure based conversation from my 2handapoint of view and yet, it turned out okay. The sibling conversation and my two hearing daughters now as adults are wonderful at being able to talk about the really hard parts of our family’s past in context to the sibling experience that I couldn’t hear when they were younger because of my own sort of need to protect myself around whether I failed or not in that area. It was really hard. It’s a great conversation. I love talking about it.”

LS: “Thank you. There is no failure, just lessons learned. That’s amazing.

Alright, Janet, if people would like to learn more about Hands and Voices, google it and your state’s name, and if they want to reach you, is that a possibility?”

JD: “Absolutely, you can reach me at janet@handsandvoices.org and I think that will be in the transcript or however you share that. I did mention some resources today that I’m going to send you so if you want to include those somehow to the listener, those are great. I love sharing resources and information. If half the people would use half the resources, half the time, our kids would be doing twice as good because there are so many good resources out there. Thank you so much for having me today. I really appreciate it.”

LS: “Thank you.”

We’ll have all those resources in the show notes as well as a full transcript of today’s conversation over at allaboutaudiology.com.

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

Dr. Lilach Saperstein handsandvoices hearing loss Janet DesGeorges