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In episode 87, Dr. Saperstein speaks with Erin Miller, mother of 2, living in Malaysia, and member of the Connect & Advocate program. Erin shares her experiences with discovering that her daughter Emuna is hard of hearing and what resources she was seeking early in that journey. Over the last several months she has connected with many families in her community, advocating for deaf inclusion and sign language instruction. 


3:30 – It may be helpful to get multiple medical opinions from different doctors
4:30 – It’s important to remember that the timeline happened the way it happened; it just part of the process
9:30 – Support groups and knowing that others care about you are crucial to know that you are not alone
12:30 – Due to social media, you can find support from anyone or anywhere in the world!
15:30 – Milestones are not always set in stone; every child develops differently
19:00 – Connecting with your child allows you to get to know your child and develop a deep love for your child


For more resources and research visit:
All About Audiology Website 
All About Audiology Facebook group  
All About Audiology Instagram
And the Prodana pay-it-forward platform here: https://prodana.org/practioner/lilach-saperstein/audiology-counseling–dr–lilach-saperstein

https://www.patreon.com/join/allaboutaudiology


Guest’s Links
https://www.instagram.com/millercoshop/
https://millercoshop.kyte.site/
https://www.instagram.com/millercoshop/


Mentioned in this episode
Connect and Advocate Program
Hear Retreat 

Listen next:
https://allaboutaudiology.com/all-about-raising-hoh-children-as-a-hoh-parent-episode-88/


Transcript
Dr. Lilach Saperstein:
Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. And this is a very special episode with one of my favorite people, Erin Miller, who is from Malaysia. And she has been part of the Connect and Advocate Program for many, many months. So if you do not know about that program, that is the program that I run online. It is part support group, part informational workshops, and a beautiful, beautiful space for parents of deaf and hard of hearing children. So we’re going to talk more about that. We’re going to talk about the free Hear Retreat that we do for parents to come together and talk not only about the hearing loss and deafness and hearing aids, cochlear implants, sign language and decisions, but also about your experience with everything and how it affects your life, your relationship with your spouse, and other family members. Having a deaf or Hard of Hearing child is a big difference change [that is] unexpected most of the time, and it affects your emotions, your challenges with it, [and] the new things. So I’m excited to get into this episode with Erin, and I would invite you to have a listen. If you have any questions, always feel free to message me on Instagram at all about audiology podcast. Find me on Facebook, and guess what? TikTok too! So without further ado, welcome Erin to the show.

Erin Miller:
Thank you. Hi, I’m so happy to be here.

LS:
Tell us a little bit about yourself, your family, and when you first realized that audiology and this whole world would be a part of your life. 

EM:
Well, I’ll tell you about myself first. I’m Erin. I’m happily married to Adrian and have two kids: one who’s four and one who just turned one. My second daughter is Emuna. She’s hard of hearing. And so her birth was when I was dumped into the world of audiology and hearing loss and deafness, which was a real surprise to me because pregnancy had just been smooth sailing. [Even though] the first one was a little bit traumatic. So everything was a surprise because she [was] referred on her newborn hearing tests. And I don’t know whether we were expecting hearing loss per se because everyone around us just kept telling us that it’s probably just fluid, [and] as she grows, her ear canal will grow and it will get better. But test after test after test kept coming back showing us that she did have significant hearing loss. That’s when at least I knew I needed help. I don’t know anything about audiology. I didn’t know anything about ears other than what I learned in school, so I really needed help. And of course being a modern mom, the first thing you do is get on Instagram. Why I would think to get medical help from Instagram but yeah, it worked out right, hey?
LS:
That’s where it’s at. That’s where we are. That’s where we meet.

EM:
I didn’t even know such things existed on Instagram other than happy pictures. But yeah, it was a great community that I found on all about audiology. And so many other Instagram accounts as well that I encountered there. And so that’s how the journey began.

LS:
So can you tell us a little bit about that experience of being told: this is not a big deal [and] wait, wait, wait. But you are concerned, and you have questions. You didn’t feel the team, [meaning] the medical professionals, were making enough of a deal about it.

EM:
Maybe it’s just my personality as well. I’m not one to take what you say just because you said it. So from the first referial on the test straight away, I really wanted a second opinion and a third and a fourth. I’m actually surprised that nobody made it even an option that there would be a chance that she would actually be deaf. I guess it’s in a way the medical professionals’ way of making you feel better about things [such as] just calm down, don’t need to worry about it now, worry about it when it actually happens. But for me it was not helpful at all. Because it didn’t prepare me at least mentally or emotionally. I wasn’t given a way to prepare especially since three months down the line when it was finally confirmed that she was actually Hard of Hearing, then is when I was told: ‘it’s so important to get them access to language and sound and all that’ and I’m like ‘why did you start me earlier? Right?’ Why didn’t anybody tell me that I could have done this earlier, gotten a test done sooner, or gotten hearing aids at one month instead of four or something like that.

LS:
That’s such a common thing. I hear that from so many people about the timeline and no matter what the timeline is: if it was three months difference or two years difference, everybody always has regrets or concerns that things should have gone differently. And I think there’s a lot of inner work, emotional work that has to come into knowing that everything happened the way it happened and you knew what you knew at the time. People who were with you whether or not they did exactly the right thing had a lot of factors to it also. And that’s also part of the processing of the experience that we do within the program.

EM:
Yes, that’s right. In the earlier days, I really needed that processing help because it’s not just about the audiology side of things. It’s about how you have to navigate all these conversations with family members and sometimes people, well meaning as they are, don’t know exactly what you’re going through. They don’t know audiology, either and everything is hearsay or from something that happened to them somehow, like just one random occasion. So all these experiences with people, with the medical professionals, you don’t know what to expect. It’s hard to know who’s exactly on your side to make that right decision with you. And even as a parent of children without [the condition of] hard of hearing, you’d already be second guessing yourself on so many parental decisions. But with this, especially when there’s a pressure of giving the hard of hearing child sound access as early as possible [and] as much as possible, then that timeline [is] just pressuring you and so you always have to make really quick decisions. Or what to do next [such as] how soon can we get these hearing aids? How soon can we get to the next milestone? When’s the first word? When’s the first understanding of things? You’re always looking to the next thing and there