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All About YOU! Episode 30- Season 2 Wrap-Up

Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein, even if I sound a little different with my cold right now.

Today is Episode 30, we are wrapping up Season 2, because I have arbitrarily decided that every ten episodes is a season. It is also a new year, 2020. We have a lot of exciting things coming up for Season 3. I am so looking forward to getting out that tinnitus episode for you guys, and an episode on vestibular and balance disorders. Those are coming soon!

I also want to continue taking suggestions from you guys. You can send me an Instagram message or on Facebook or through my website, You can absolutely put in requests. A lot of the episodes have come from requests from you guys. One of the biggest things that has come out from listening to what you guys are asking for, is talking more about the role of the parent and how our parenting is affected, challenged, changed by having a child with hearing loss or a child with any kind of special need or a child that requires more medical type of appointments. How to balance being the advocate, being the parent, dealing with your own emotions. That is a big theme that has emerged. It has always been here since the beginning but it’s really gotten stronger. We are going to continue along that line with a very exciting episode that I have coming up pretty soon. There’s also another episode in Season 3 with a Somatic experiencing parenting coach. So, if you are interested in that, definitely look out for the episode with Mama Manon, that is her specialty.

Anyway, if you are on Instagram, you can have all of these behind the scene updates because I story almost every day @allaboutaudiology podcast. I also have an episode ready and prepared about audiology equipment and I think this one will be very interesting to our audiology student listeners, where I discussed with an expert on the equipment that we use for audiological testing and I think it’s a very important and interesting way to understand why audiologists can do what they do. How do we write the reports and how do we get to the decision if the child can hear or not and what kind of hearing they have. I think you are going to love that episode with Julie Renshaw who is an expert on equipment. So, that episode is also going to be coming out in Season 3!!!!

To take a quick look back in Season 2, we started with an episode on BAHA (Bone Anchored Hearing Aids) and I interviewed Abby Perets, an amazing mom. She shared the story of her son who has microtia. She also gave us a lot of a context of the family in what was going on with another son who was diagnosed with leukemia. We really got to hear her story. She shared so much of her wisdom, so much of her experience and one of the things I love that sticks out to me from speaking to her is her sense of humor, her sarcasm, and her straight way of saying, ‘No one is looking at your kid, you’re the only one who is obsessed with them. Everyone else is not caring.’ Sometimes people don’t even notice that he has devices and they don’t even notice that he has microtia. I really enjoyed speaking with Abbi. If you want, go back and listen to Episode 21 to get more of that story.

In Episode 22, we had this debate on whether or not you should open the cochlear implant package with the patient or just give them the whole knapsack and tell them to come back next time. That was a debate we spoke about in Episode 22. In Episode 23, we had Cornelius Maxwell, who is a veteran and does a lot of advocacy for helping veterans transition back into civilian life. We spoke about protecting your hearing and noise induced hearing loss, which actually is a topic that I did my doctoral capstone on, a very big paper all about noise induced hearing loss. So, this is a topic that’s very important to me, protecting our hearing, especially protecting hearing when there is some hearing loss, and we want to make sure that we are not giving additional hearing loss on top of that because of noise. So, that is over on Episode 23.

On Episode 24, we spoke more about troubleshooting hearing aids and what are some of the things that you guys can do to make sure the hearing aids are in good working order. In general, all the All About YOU episodes, the even ones, have a lot of your comments, questions and responses. So, those are really fun and I really enjoyed doing those, because from the beginning of the podcast, I said it’s very important to me that we are having this back and forth. And we are building this community and support, because it’s hard. It’s hard to be in a little bubble of your own specialists and appointments and running around and other people in your life might not be in this topic or in this series. So, I just love the idea that from all over the world, we are connecting and helping each other learn and grow, all for our wonderful kiddies, loved ones, precious people or your very own self to learn all about audiology and about advocating for yourself. You know, I could keep going…. I will keep going, Hahahah.

Okay, Episode 25 was phenomenal, an interview with Dr. Lindsay Cockburn from @listenwithlindsay who is moving and shaking things over on Instagram with her amazing infographics and so much information. She has so many resources for parents, you can check out her blog and listen to the episode we had. The conversation we had was, “Do cochlear implants work?” It gets to the heart of what does it mean for something to work. How are we defining success with the cochlear implants? We spoke about the resources that parents have available and just the entire process; How information is delivered and how expectations are set. It was a great episode and I’m so honored to be friends with Lindsay, she’s so great. So, I think you are going to love that Episode 25.

In Episode 26, I interviewed another super cool audiologist on Instagram, Dr. Samantha McKinney @youcicanhearnow. She is an audiologist and a cochlear implant user. She shared her story of how getting the cochlear implant after years and years of using a hearing aid and what that experience was like. Dr. Samantha is super, super awesome. She writes about the hearing loss experience and she is also a great mentor for a lot of students who say, ‘Can I be an audiologist if I have a hearing loss?’ Yes! The answer is absolutely! You should go follow Samantha. I just love making friends on Instagram through the podcast and meeting other professionals and meeting you guys. This whole thing is just such a dream, such a joy.

So, on a side note, if you are really into something, you should start a podcast. Hahahaha!

Episode 27 was all about Auditory Verbal Therapy (AVT) and I interviewed the executive director of AV Israel, Elaine Matlow Tal-El, who was so instrumental in bringing Auditory Verbal Therapy to Israel, where I currently live. So, we spoke a lot about that process, about the story of her and her two daughters who are now all grown, and how she really advocated for a specific kind of rehab and therapy for them to develop spoken language. That episode was packed full with information, a lot of conversation about Auditory Verbal Therapy came out from that.

As you guys know, in Season 1, we really dove into this question of sign language as a modality, and listening and spoken language as an approach. We had Kimberly Sanzo, that was a very major focus in Season 1, so I’ll just shout that out, because also I do love Kimberly Sanzo who is also doing amazing things on Instagram with advocacy for sign language for deaf children. That was Episode 15. So, all the episodes are kind of connecting one to the other. I’m trying to build a little map for you, kind of like an index, to find out what topic you are interested in and sending you over to that episode to get more.

In Episode 28, we spoke about the benefits and limitations of hearing aids, what it’s like to have a hearing aid and still not hear well and still miss things that are said and how difficult that experience is, not just for the person who has the hearing loss, but also for everyone around them. Also, I told you about the Speak Up sessions that I offer that’s a one hour boost. It’s a one on one with me, we really get to the heart of what is the advocacy thing that you are trying to do, what are the words, what is the language that you are looking for to be able to tell the teacher what your child needs. Or to be able to talk to your sister-in-law when she says those really annoying things that you are on edge about… So, if you want to learn more about that, go to to book a speak up session with me.

Our most recent episode was with Avivah Werner, who is another incredible mother who shared her story about her son with Down Syndrome, who had a late diagnosis, or misdiagnosis, or some kind of delay in the treatment of getting hearing aids and what that experience has been like. We really focused in on self-forgiveness, letting go of mom-guilt and how important it is to listen to your intuition as a parent. It was a beautiful, beautiful conversation and I really recommend you go listen to Episode 29.

This is Episode 30, and it’s All About YOU, so I’m going to share with you guys some of the comments that I have been getting from you on Instagram and on Facebook. It warms my heart! You don’t know how much it gives me to know that I’m so passionate about this, I’m speaking into my microphone on the couch in my living room and you guys are hearing this in your car, or on your way to work. Wherever you guys are listening, it’s building a conversation and it’s just outside of time and space. Technology is amazing!

From one of my followers, I received a message about how difficult it has been since a cochlear implant activation, specifically with the magnet. The magnet of the cochlear implant needs to be just right, like Goldilocks, not too tight and not too loose. If it’s too loose, it won’t have a good transmission, it’s always going to be falling off. So, you need the magnet to be strong but it can’t be too strong because then you can have a bruise or redness, or scarring or pain in the area after using it for so long, if the magnets are too tight. So, there are different numbers and different strengths of the magnets that can be changed out in the coil.

It’s one of those little things that we talk about, you know, like do cochlear implants work? Yeah, they work, but how about this other issue that maybe someone didn’t even consider that there could be a whole story, back and forth. Going to the company, picking it up, transferring and all that being involved takes a lot of energy and takes a lot of days off work and travel time, and all those things that come around it. So, I really appreciated her sharing that experience with me. I’m wondering about YOU listening now, what is a thing that is related to the usage of a hearing aid or a cochlear implant that has been hard for you, or that you have been surprised by the upkeep. I know, sometimes people talk about the cost of batteries, or things like that, that they didn’t consider being part of the whole deal. Of course, that depends on your insurance and where you live, etc.

I also was in touch with one of you about your daughter’s upcoming cochlear implant surgery. I just felt so honored to be part of your story and to hear about the preparation and how it’s going. You asked me a couple questions on what to expect for the surgery, on what she should bring to the hospital on the day of the surgery, what to pack, and I answered her with a long Instagram message. And I asked her if she would mind if I put this on my blog so other people could have this information. So, I did with her permission and you can go and see at a blog post about preparing for cochlear implant surgery, what to bring in the bag, their favorite toy or stuffed animal… You guys have heard some of that advice from me before. It’s nice to have it there on a blog, and maybe you can share that with friends who are going into cochlear implant surgery, they made the decision and now they are wondering what to do to prepare.

I also want to tell you about a message I got on Facebook from a mom who has a child recently diagnosed with hearing loss. She wrote to me and said, ‘Your podcast has been so amazing. I’ve been bingeing them from the beginning. She said Episode 1 was amazing and she was immediately hooked. I was like, in shock. I never heard from anyone that they binged the podcast, so it was such a sweet message and I’m really glad that it has helped her. She said she has gotten a lot of information and is really getting into this whole whirlwind of the audiology world.

My dream and my thought was to start a podcast at the end of January 2019. Here we are, at the end of January 2020 and there are 30 episodes out. There is this amazing community and I’m just so honored that you are sharing this with me and that you are a listener. Thank you for giving this to me, because it’s beautiful to feel this sense of purpose and to find my voice, even though it’s a little cranky right now (from being sick with a cold). I have a perspective to share that I really care about you guys. All over, wherever you are, whatever you are going through, I am cheering you on!

The last thing I’m going to mention is a conversation that I had with a friend. It has nothing to do with hearing loss or audiology. She was sharing with me that she went to the pediatrician and the pediatrician did not listen to her concerns, did not want to take in her input which she was talking about a skin issue that her child had. She was saying, ‘What kind of medicine should I use? What should we do? How do I treat this?’ He said, ‘No, you don’t do anything, you just let it be.’ So, she asked, ‘How long do we do nothing for it?’ He responded by saying, ‘You are overreacting…’ Basically, he dismissed her concerns. She did not feel like she could speak up anymore after he shut her down. She came home upset from this appointment. She was unsure if she should use the medicine or if she should listen to the doctor or not…

So, I said, ‘I don’t really know anything about that skin issue, that is not my level of expertise, I am not that kind of doctor, but what is concerning to me about your story is that you didn’t feel you could have a dialogue with your pediatrician. You didn’t feel that you could have a voice, that you could ask your questions. You left there more confused than when you went in. That doesn’t sound good.’ She said, ‘Yeah, it’s ALWAYS like that. It’s very hard to talk to him, he’s very dogmatic, what he says goes, he doesn’t really listen to me or let me ask questions.’ I said to her, ‘Listen! Listen and pay attention to how you are feeling right now. Listen to your own words and really tune in to how does it feel having this pediatrician in your life, in the care of your children, even just regular well visits, you need to feel comfortable with your healthcare providers.’ If you don’t feel comfortable, it is absolutely within your rights to switch pediatricians, and go to a different office.

This was a lesson that I learned in a very big and personal and deep way after the birth of my first child, when I had an OBGYN that did not consider me, specifically. I had a very difficult birth experience and there was a lot of intense healing that needed to come after that first birth, and part of that was saying, ‘I can choose who my health care providers are.’ I actually didn’t have the knowledge or was not empowered enough to know that I don’t have to just go to the first and closest OBGYN or the one that all my friends are using, or the one that is covered by my insurance. I can actually go and do some research and meet different people. I actually went into some informational appointments, where I wanted to see if I wanted to establish care here.

What I found was that in another practice, that was led by midwives, they were much more understanding of what I had gone through and what kind of birth I had wanted for my next birth. Just from that personal experience, I really grew a lot and said, ‘I have a choice. I am a consumer of health care.’ I’m sorry to say that that is kind of the way that the world has gone but in another way, it’s great. Because it’s gone away from this paternalistic model which is: “I’m the doctor, and you’re the patient. What I say, you do! You don’t ask questions and that’s it!” But now, all of us are much more educated, much more able to access information, all of the internet is at our fingertips at all points. You’ve got podcasts explaining what every condition is, what the implications are…We can access a lot of information and support to come into a doctor’s appointment and have a conversation. So, all of medicine is moving towards shared decision making, and the doctor presents pros and cons. But of course, at the end of the day, it is the patient’s or the parent’s choice of what to do. I didn’t think I was going to go into that personal tangent but this maybe gives you a window into why this is so important to me, about why I’m so passionate about what I do because it really makes a difference. It changes the trajectory of your journey. It can really move things for you. When you, as a parent, are empowered, magic will happen. Magic goes on because you are taken seriously, you know what’s going on. So, I’m just so proud of you for seeking this out, for being a listener, and for taking life seriously.

It would mean so much to me if you shared this with another parent, someone in your support group or parent group who you know will benefit from this podcast. Please share it with them. You can tag them on Instagram or you can send them the links and I will be so honored to have more people join our community.

That’s all from me today. This has been Episode 30, the end of Season 2. All I send out to you is, ‘Thank You, Thank You, Thank You’ and I give you power to make you feel better, wherever you are, that maybe you could have a little smile on your face, and know that you are doing great.

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

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