Read the full transcript here

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 
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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 

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. 

Unknown 1:32
Well, I’ll tell you about myself first. I’m Erin. I’m happily married to Adrienne 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’s so much pressure. And having someone from an audiology point of view, who is also guiding you. I think that makes a big difference.

LS:
There is so much pressure on parents in general, for sure. And that’s what I saw was missing. That was the whole reason for the beginning of the podcast and then the group as it came together and why it’s called Connect and advocate because I really believe that it has to be about the connection that the parent has with their child and the parent has with themselves. If you’re listening to this and you’re feeling like all of that overwhelm, and that uncertainty, and you don’t know who to trust – a lot of it comes back to trusting yourself and knowing that you can take in information and make good decisions. And then you can be a really good advocate. It goes together; connect and advocate. I’m so excited to think back with you, on when we first met online obviously. Around the time that I did a Hear retreat, which I do periodically. If I remember correctly Emuna was either four or five months old and you came to the retreat. So what were you looking for when you signed up?

EM:
To be honest, I didn’t know what to expect because it was pretty short. But when I first joined I was like ‘oh, wow, you mean I can ask questions, even though it’s free’. And I think what surprised me the most was when you contacted me after I signed up and had this personal chat before the retreat just to find out what I was going through and for you to prepare what to do with us at the retreat. Right. 

LS:
Yeah. 

LS:
And I think that was the most surprising part of the retreat, actually, because I mean, you don’t expect much from an Instagram account, right? It’s kind of like passing information usually.  I don’t expect to get that many answers to my questions because you’re popular. You’re an influencer. 

LS:
No, no

EM:
Yeah! [So] That first call was really what made the whole difference for me, like somebody knows when I’m going through and I couldn’t get this kind of help right now. I can’t because the understanding of the culture around audiology is different. And so the culture around deafness is different. So I really needed that support that I couldn’t get where I am right now. So yeah, that first call and then the Hear retreat after that. I don’t know whether you remember, but I had tons of questions.

LS:
So that’s the place. That’s why I did it. We are all people even though the numbers Instagram and the algorithm and all that. But we are people, and when people reach out to one another, that means a lot. I take the messages very seriously, and why I created the retreat was for all of us to come and actually see each other’s faces on Zoom and have a conversation. The very first retreat had about 25 people live, others watching the replay, and I felt like that’s a huge crowd. Like every single person, wow. I felt so honored that all these people had come together. We had a beautiful retreat. And then after the second, the third, the fourth we had more intimate gatherings. Ten people, even five people, and I like the big ones. I like the small ones. Every time it’s different. The middle of May is the next retreat. So definitely we’ll have a link to sign up and learn more about that. I’m so excited that that was meaningful because I want to know who’s coming to the retreat to make sure that it’s appropriate for you [and] that your questions will be answered. So wow, I’m glad to hear that. That’s surprising to me. 
And in case I wasn’t clear, the retreat is free. It’s for you to come and make connections, meet other parents around the world. And then from there, I invite people to join us in the connect and advocate program. So I’d love to hear what were the thoughts that you had when you first learned about the program that we have and the things that made you want to be interested in joining us.

EM:
I really needed support because like I said, I wasn’t quite getting the support that I needed from the medical community here. I mean, maybe it’s not as advanced. Maybe they would consider themselves advanced, but the feeling that I get from hearing about deafness in my country, it’s not as well established as in America or other places. So I really needed someone to say that you’re making the right decisions, and it’s not exactly going with the flow of normal audiology in your country. But that’s okay. And more power to you to do the right thing or to do what’s right for your family. Yeah, I think I really needed that. You can Google a lot of things, but I’m not an audiology expert. I had to dive into it. But even the deepest dive can make you an expert. Overnight – that’s pretty much how quickly you have to be an expert at it right? Because from newborn to three months, that’s how long you have to Google everything about hearing loss.

LS:
And you’re not busy at all. Nothing else is going on during that time with a newborn.

EM:
Yeah! With a newborn, right? Sleepless nights and everything. And also I just had a baby and I’m already dealing with my body, and the lack of sleep, and just making sure that this little person stays alive. I don’t have the capacity to say I made all the right decisions at this time. I need someone to say this is what you have to think about. At least being objective about it, even with all the options. Sometimes I feel like where I’m from, audiologists tend to see deafness as a sickness to be cured. Yeah, so in that sense, all the solutions work from that angle. Whereas Lilach, you give me all the options. I’m empowered to make the right decision in that sense. Whatever is right for me and my family. So that’s helpful. That’s what I needed.

LS:
Oh, wow. [There is] This big controversy of what decisions to make and who to listen to. I feel that clinical audiologists who are doing such amazing work, all of my colleagues, are working so hard to get testing with kids and stickers and lollipops and really doing so much of the very intense mapping and programming and all that stuff. And then there’s not so much room for emotional space or time for them to also hold your hand with ‘how are you feeling about it’ and [being able to answer] your questions. So this is also for our colleagues listening. This is something where you can say I know that you need more, go to the retreat. Here’s the link. It doesn’t have to always be from one person or from one interaction, and you can get it somewhere else. Even someone in a different country, which I think is really great.

EM:
Yeah. When I go to my audiology appointments it’s a short meeting, because that’s the appointment time. There’s other patients waiting as well. They don’t actually have that time to answer every single question. And if it’s a government hospital, then it’s even more packed because it’s public, right? So everybody’s coming to see them. So I get that, and so I needed more. I was surprised that I managed to find this support out of country from overseas, the group is from all over the place. I mean, thank God for technology, right? 

LS:
Yes, indeed. And I think the biggest thing you also mentioned was about seeing that your child’s identity and your relationship with them is bigger than what’s wrong with them. Those terms and expressions; oo, they hurt my heart.

EM:
The terms that you get is how you would perceive your child, and so I think that’s not necessarily what the medical professional might be concerned about because it is something for them to fix. But when you’re a parent and you’re looking at your child and yes, it is a problem but it’s not the be all and end all problem. [For my sake] it’s a baby I’m looking at. It’s a person. Whether or not she’s deaf, I have to treat this baby with respect. I have to teach her how to navigate life, and coming from a hearing perspective. I needed an all rounded perspective. I needed to get in touch with the deaf community as well. And surprisingly, I think the push from the group is that I realized that I didn’t need to wait for a community to be established in my country for parents who need it. I realized, wow, we are from all over the world we can meet and we can encourage each other. I can do the same in my own country. I can find and establish a tribe as well. And that’s what I’d been encouraged to do.

LS:
It’s incredible. You’ve done so much and you become a leader too. And now you’re helping other people being like, Okay, over here, swim over here.

EM:
Yeah, I mean, I don’t claim to be an expert. I just happen to meet people now. I started making hearing headbands and I just started meeting people randomly. I realized it wasn’t being offered in my country. And now here I am, and it’s amazing.

LS:
And Emuna recently turned one. Yes. Congratulations. Happy birthday. 

EM:
Thank you.

LS:
You shared [the following] with me. Tell me if it’s okay to say this. The pressure there is on that first birthday. 

EM:
Yes. 

LS:
The milestones of 12 months. Yeah, talk a little bit about what that was like for you. 

EM:
Well so that’s another area of the medical professional speech therapists. I really do have a great speech therapist. The only thing is it is a lot of pressure because you want to know if the hearing aids are working. You want to know if sound access is there and that they are not being deprived of language and you want to meet those milestones. But we can’t expect someone who has hearing loss to behave exactly like someone who doesn’t. 

And so the milestones even for just kids, right? The milestones differ by so much. I mean, there’s a range of course, but I’m sure that once you get to the start of the range. And if your child is the kind that, you know, I’m gonna take my time until the end of that range, you’ll be panicking throughout the range, right? Whether or not your child has hearing loss too. Especially for deaf children, then the pressure is really on. And so for me, I had an older child who was ahead of her milestones and so in my mind, the milestones were completely off because she was off to them. [But] When I compare my second child then it’s like, she seems really, really busy, but actually, she’s completely normal. And that’s what I got from the group. Just sometimes, you know, just to be able to shoot these questions in your mind. You don’t want to worry about it. You know, you shouldn’t worry about it. But you just want to get that confirmation. And I’m just amazed really how quickly the encouragement comes back, and you need to hear these things so that [you know] you’re not being crazy. Everybody worries about it. Don’t worry about it, because every child, they have their own timeline. And so long as you know, you keep doing what you’re, whatever therapy exercises that you need to do, you can be relaxed about it. You can focus on connecting rather than pressure, pressure, pressure, pressure on this little baby.

LS:
Wow. So in the group we meet three times a month. And even if you can join live [due to] time zones or whatever other reason you can’t join, we record it. And then you’ve had that experience a lot with the timezone difference. 

EM:
Yes.

LS:
So tell us about your experience with the group in that you’re connected with everyone, even when you aren’t always there live. And that’s a testament to what the people in the group have created.

EM:
I love the other parents in the group as well, because they’re just so willing to share. I think it just comes from the shared journey to a certain extent, and in the community that I’m building now here, I realized that just so much that you can offer from being even two months ahead in the journey. You know what I mean – that you can just look back and think ‘oh, she’s [another woman] probably worrying about this. Why don’t I offer some encouragement [such as] it gets better or you will be okay. Just these small little things that people need because they’re just worrying all the time. Parents will just be worrying. Am I doing the right thing? Really, am I doing the right thing? Is this the right doctor? Is this the right advice? Is this the right next step? But for someone to say I’ve been there and you will be okay makes a huge difference.

LS:
Yes. And we have such diversity. You’re Emuna was the youngest, but we have people in the group whose children are five and seven and two. And we have hearing aid users and cochlear implant users. And everybody’s in different educational programs in different countries and different medical systems. So even in that it’s a diverse knowledge base and everyone’s experiences can be shared that way. 

EM:
That’s right.

LS:
Awesome. Erin, I’m so glad to talk to you. I always love talking to you. So my last question for you and for everyone. What advice will you offer parents who are searching, who are hoping to find some more support? What advice do you have for them and a little bit of love to everyone?

EM:
So much, but let me narrow down.

LS:
Go ahead. Bring it on.

EM:
I think the main thing is and this is something that I got from the group as well, connection over everything. I think it’s important to realize that your child is a child, and all children come with their own special issues. Whether it’s from behavior or terrible twos. And hearing loss is not your fault. Really. Sometimes parents need to hear that it’s not your fault. Someone can’t even identify where it comes from or how it happens. So make sure you’re not all about fixing, fixing, fixing but connecting.

Even when you do you know your speech therapy exercises, your language enrichment. It doesn’t have to be because it’s an exercise that you need to do. It’s an opportunity for connection. It’s an opportunity to get to know your child, to love your child, to just let your child be a child. It’s tempting to want to push them to be so called ‘normal.’ It’s so tempting to push them to be what we think is normal, but I think we need to be reminded that this is a child and let them be a child. Your child is not an orange. You don’t have to squeeze every single drop out of your child in that sense.

LS:
Instagram ideas are from our conversation.

EM:
Yeah, you don’t have to squeeze them so hard. You can just hug them. Just hug – that’s fine too. I think that’s the mean advice I would have. Yeah.

LS:
That is beautiful. And we try to stay in the moment as much as possible. I think what happens so much in this space is we’re always thinking about their future and their abilities, and what access they’ll have when they’re older and what life they’ll have. And we’re like the kid is three months old and we’re thinking about

EM:
Yeah, I do that all the time. You need the grounding, right? The worries do take you anywhere bad basically. You don’t have to worry about something that may not even happen, and I think that’s where sometimes you know you need someone to rein you back in – the bjective voice of reason.

LS:
That is so true, amazing advice. Thank you, Erin, so much for sharing your story and your experience being such an important part of the group. Thank you for the wonderful all about audiology listeners and those of you reading the transcript that all All About Audiology Podcast. We will have full links to a lot of the things we discussed today, including Erin Miller’s Instagram, as well as Miller Co Shop, where you can check out those headbands and definitely sign up for the next tier retreats. That will be all about audiology.com/here. And I look forward to hearing from you. Thank you so much. 
One more thing about the hair retreat is that the hair retreat is a little tongue in cheek, it’s called a H.E.A.R and so you kind of think it’s about hearing but it’s really not. H.E.A.R is that acronym that I made up for the four big pillars, the topics, that I want to always discuss with parents. H which is the history, what experiences you had until now. And E is about the emotions and all the feelings that come with that. Then we go into advocacy and what you can do to [support] your child the most. And R is always about reconnecting. So if anybody’s concerned about why is this called The H.E.A.R retreat, it’s really just to be clever with audiology. Okay, thank you so much, Erin.

EM:
It’s my joy. I look forward to all the calls.

LS:
Oh yes. We’re going to inundate you with messages? 

EM:
Yeah.

LS:
This is the All About Audiology podcast. Thank you. 

 

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