My Child Has Hearing Loss, Now What?

00:00:00] Announcer: Welcome to episode 27 of empowEar Audiology with Dr. Carrie Spangler.
[00:00:17] Carrie: Welcome to the empowEar Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:46] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowEAR Audiology Facebook group transcripts for each episode can be found. www three, the number three C digital media network.com under the empowEAR Audiology podcast tab.
[00:01:19] Now let's get started with today's episode. All right. Hi, everyone. Welcome to the empowEAR Audiology Podcast, and I am really excited to have a return guest with me today. I have Dr. Michelle Hu and, uh, from mama who hears, and she is a pediatric audiologist who also like myself has bilateral hearing loss and she uses cochlear implants.
[00:01:46] And I actually interviewed Dr. Hu and the episode 16 of empowerEAR Audiology. So please go back to that episode and you can hear more about her personal journey.
[00:02:00] Michelle: Today,
[00:02:01] Carrie: however, I have Michelle on this podcast because she has a new adventure and a new resource that I want to find out more about. And I think all of our listeners are going to want to know more about this amazing resource called “My child has hearing loss now what?”
[00:02:21] This is a great question. And I can't wait to hear more about this resource. So welcome back Michelle, to the empowEAR Audiology
[00:02:30] Michelle: podcast. Yeah. It's I love hanging out with you, Carrie. Thank you so much for having me here. Um, yeah. I have a new adventure for the past several months. I've been working on this program.
[00:02:42] Um, and how it came about is I started my Instagram and I said, you know, what, if I still have fun with this in a year, I'm going to do something, a big project, something that can really. Help others hope, you know, and maybe change the world of audiology. Um, I started getting so many questions from parents and I just wanted to step up to them and give them a hug.
[00:03:12] I wanted them to say, schedule an appointment with me, come and see me. But these parents are all over the US all over the world. In fact. So I started putting together. Basically a curriculum or a list of things that should be addressed or that I wanted these parents to have information and resources about it started.
[00:03:36] Oh, go ahead.
[00:03:37] Carrie: So how did you come up with this list? Like, what is it because of your personal experience, your professional experience, how did you come
[00:03:46] Michelle: up with the list? The questions I was getting from parents were very similar to what I would get in the clinic, but in the clinic, while we have protocols in place, we have got my phone.
[00:03:59] Um, we have we have a system, we have a path for them to follow and. I quickly realized, wow, like not everybody has access to pediatric audiology for one. Maybe they're going to an adult clinic. Um, maybe families in rural areas, you know, can drive three to four hours away. I have patients that, you know, I'm in California, some of them drive from Mexico over the border to come see us.
[00:04:33] Some of them drive from four to five hours away in Arizona to come see us. And I was just thinking my goodness, I want to be able to somehow package everything that I talk about and give it to parents. How am I going to do that? Well, a video of course might be a good idea, but I don't want to. I don't want to, I can't, I can't test, you know, their child through the internet, through the computer, but I can give them all of the knowledge that I give to parents at the end of appointments, as I'm walking them out of the hallway through the door
[00:05:12] All of those things come from my personal experience. So, yes, um, I've collected all this information while, while being a clinician, but I also have, you know, 38 years of personal experience that I can share and that I think can help a parent get a sense of calm, more confidence, and, um, try to. You know, settle down the anxiety or the doubt that they might feel.
[00:05:40] All of the information is out there. I'm just packaging it up and. A nice little package with a hug. Oh, I love
[00:05:48] Carrie: that idea. So I was just looking at some of the information that you have put together and the different topics that you do have, and they're all very important topics, but I thought we could just highlight maybe a couple of the topics that are going to be included in that, in your book.
[00:06:07] And maybe before we do that, can you just explain. Uh, the package that you're going to be offering for parents and possibly professionals
[00:06:16] Michelle: too. Absolutely. Yeah. I started off with the idea of, I want to create video modules for these parents to be able to watch. I am a mom of two little kids. I really don't make time to sit down and read books.
[00:06:33] Um, and maybe that's the way I learned to, I just want to see things and be a little bit more interactive. So I started writing down, you know, I have eight modules. The first is processing the diagnosis or when your child is identified with hearing loss. Uh, family, some families are devastated. My mom was, and some families actually feel a sense of relief.
[00:06:59] Maybe that parent has been suspecting something's going on with their child, but all the doctors are saying, no, no, no. They're just, you know, just give it time. They're lazy. Or whatever, um, that parent might feel a sense of relief when they finally find out what's going on. Um, I go over audiological testing, what kinds that we do for different ages or different cognitions.
[00:07:24] Um, and. I explained, I also told the parents, how can you prepare for this appointment? This one will be longer. This one will be shorter. Um, you want to be well rested or maybe for a sleep test. You actually want to bring your child super cranky. There and we're, we're SO we're very happy to see your child with cranky.
[00:07:46] So that means they'll sleep through our test. Um, and with, with that, I chose to interview several professionals that could help with that. It included an ENT. I included a marriage family therapist and SLP and auditory verbal therapist. I also included, um, Interviews with a mom of two teenagers with hearing loss, a deaf mom.
[00:08:13] Uh, so Emily Burke, is her name's, she grew up in a hearing family. She uses ASL as their primary mode uh, primary language. And she has a deaf daughter and a hearing son with incredible to see her journey as you know, a deaf parent from different. Different walks of life. I interview my own mom. I, that one made me cry because I got to see a part of her.
[00:08:42] And she shared different emotions about her journey that I had never known. Maybe she was afraid to share before. Cause she thought it would hurt my feelings, but I was just like, oh my gosh, mom, like you, you felt the way you felt. And it had nothing to do with me. Um, anyway, so back to the curriculum, I, I go.
[00:09:05] What are some options? If you want your child to be amplified, I go over different languages. You can use the auditory verbal spoken language. You can use sign language, whichever one it is. It's important that your family that is completely a hundred percent on board. Um, So it's not easy either way, you know?
[00:09:29] Um, but talking about those decisions, they included some exercises, um, in the handbook that are there other conversation starters, so conversations to have with your child conversations to have with yourself conversations to have with your co-parent, if you have one. So there's eight modules in the program.
[00:09:51] There's 13 bonus interviews in these video modules. And then I thought, oh, I want to create some supplemental material. I thought it would be a few PDFs. Well, it turned out to be like 130 pages, so it made it into a handbook. Um, and it was just, this project was just growing bigger and bigger. And I couldn't a lot of these things I couldn't say no to.
[00:10:14] So I was like, you know what, we're going to do a complete package. I'm offering just the handbook alone. You can get that on or without the video, you can get the handbook and the videos, if you'd like that, um, that's the complete package. And then for people who need some extra support or one-on-one sessions, I've offered the handbook, the program, and then a 75 minute, um, where at least to start a time to chat with me.
[00:10:43] Um, and see, you know, talk about what your specific situation is like, where your anxiety is, how can I help you and how can I support you?
[00:10:52] Carrie: Wow. That is an amazing package and 130 some pages that is a lot of resources for people for, I mean, as a parent and just what you commented about your mom and the emotions she was going to talking about it and a video now, how do you think this.
[00:11:12] Package or what age group for a parenting does it really target was the all age.
[00:11:21] Michelle: It can apply. It's mostly targeted to those parents of children who, um, from birth to that first year post identification or post-diagnosis I do include, um, how to take care of yourself as a parent of somebody who with special needs.
[00:11:40] I had to also talk about how to advocate for your child. And then we get into school age. So it's a wide range. The first part is really that first year post identification or diagnosis. And then the second part is more school age. What can I do? We talk, I interviewed Tina Childress who is an educational audiologists like yourself.
[00:12:00] And she talked all about IEP. Then what kind of services that schools can offer? Whether your child is going to use spoken language, or if they're going to use sign, assigned language. So it's giving the parents resources of how do I navigate school now, wait, there's an educational audiologist. And I have somebody in the clinic, what are their different jobs?
[00:12:23] And I really pose these questions to these professionals so that parents can. They can kind of meet an educational audiologist or a speech therapist, so they can find one in their area and also have a little bit more confidence going to meet them and knowing what they're there for. Instead of, I don't know, you're a professional.
[00:12:45] You tell me what to do. Okay. So if they can go into that appointment with two feet firmly planted on the ground, this is what I want. This is what I'd like to get out of this appointment. They can work that much closer and better with that professional and really reach the goals that they want for their family or for their child.
00:13:04] Carrie: Right. So empowering that parent is so critical and this whole process, and it's obviously a journey.
[00:13:12] Michelle: I remember like when we were young, we had Dr. Flexer and I think the parent support group with only just starting, they were stumbling their path and figuring out what to do. Um, and our parents didn't have Google back then.
[00:13:30] They didn't have internet. They didn't have Facebook support groups or Instagram,
[00:13:37] what they could, they did the best with what they could.
[00:13:41] Carrie: Yes. Yes. So there's so much out there, but I think sometimes it's overwhelming. So to be able to have a resource like this, where it's packaged. So parents have a go-to resource and they can get other information, but to have a kind of a, a baseline I guess, for where to get that information
[00:14:04] Michelle: and it's all out there.
[00:14:06] Um, my stance is I'm going to give you the resources. Point out to you where they are, where you might find them and you make the decision that's best fit for your child and your family. You know, um, a lot of resources or some, some groups feel like, oh, I don't have the freedom to make this, this choice for my child.
[00:14:28] Oh no, you're the parent. You do, you know, your child best. You know, these are the ingredients for whatever journey that you want to partake and go on and try this, try that, try whatever, find what, what is best fit for your family? Really?
[00:14:47] Carrie: This resource sounded very comprehensive, especially if I'm a pediatric audiology audiologist.
[00:14:53] And like you said, 38 years of personal experience and this journey, do you think this resource would also benefit other like professionals and who do you think it might be beneficial for?
[00:15:07] Michelle: Yeah, I created this thinking or with having the parents in mind, however, then I thought, you know, what? Audiology students might be able to benefit from this too.
[00:15:18] A speech language pathologist would benefit from this as well, early interventionists. We, it seems, it feels like. All of the different healthcare professionals, you know, where we specialize in something. Well, how much do we know about the other team members? Um, I think it would be a great resource for them to watch, to see me, somebody who's had hearing loss and, um, has navigated.
[00:15:46] You know her journey one in one way, for example. Um, so I think definitely a lot of different healthcare professionals related to hearing or spoken language or ASL could definitely benefit, uh, from either just the handbook or, or the videos as well.
[00:16:05] Carrie: Yeah. I was just thinking sometimes I have families in different areas may have like an early interventionist, but the early intervention.
[00:16:15] has a more global view of early intervention, which is great. You want that view too, but to be able to have a resource that they may be able to walk the family with the family and help them guide them through that too. Um, at the, you know, another person on the advocacy team that work with.
[00:16:36] Michelle: Or even therapists or counselors who work with children with hearing loss are families with hearing loss, um, can definitely benefit and say, oh, well, I watched this program.
[00:16:47] I know that there are these types of resources out there. Maybe he, or she has never met them, but this is where you would be able to find it includes so many different resources all over the world. Uh, since I do have some, um, followers that are like in the UK and in Australia now, the portions or other, the video that the, an interview with Tina Childress.
[00:17:12] She mostly talks about schools in the United States. So that part might not be able to offer as much resource or information to those families. But I mean, it's, it's all of like, it's so much, there's so many other parts to it too.
[00:17:29] Carrie: Wow. That's great. So is there anything else, I guess one other question would be if that had kind of a book format, how do you suggest.
[00:17:40] Um, parents or professionals end up getting the book going through it. Do you think of sequential or whatever's happening in their life at that moment?
[00:17:50] Michelle: I wrote an essay about this in the introduction of the book, take a look at all the different topics, see where you're at in your, in your child's journey, but also see where you're at in processing all of the emotions and thoughts and.
[00:18:05] You know, stories that are, might be swarming in your head around what's going on and take it at your own pace. Do what works for you. Don't try to learn everything all in one sitting. There's no way, you know, our moms took years to figure out what was gonna, um, what they wanted to do, or even figuring out what goal there's journal prompts in the book as well, too.
[00:18:29] Uh, identify the emotions and identify the stories that might the parent might be creating, or family member might be creating. Um, the videos go fairly, really good in terms of chronological order. Okay. Well, let's talk about the diagnosis and let's just only talk about that. Don't worry about, you know, testing or amplification just yet. The audiologists.
[00:18:54] We'll we'll get there. Um, so it's really. Take what works for you right now, leave it, process it and go back. When, whenever you have a little bit more information or when some of your thoughts and stories have settled,
[00:19:10] Carrie: I like your idea of having the journal prompts within the book. I think we all. For a couple of reasons.
[00:19:19] I think writing things down is helpful to kind of get that out and then to be able to reflect back on what you journaled too, and maybe kind of follow up with the journaling, how much you learned along the way or what you might do differently. And when you write it down, it just gives you something to go back to.
[00:19:38] Michelle: And no single no one's journey is the same as anyone else. I tell cochlear implant patients. They get, you know, frustrated how come I don't hear as well as that person. Well, it's not fair to compare you to them who might be five years out. You need to compare Carrie uh, three months post a cochlear implant activation to Carrie at day one.
[00:20:04] Look, wow. That's a huge difference. Did you notice that, you know, and everyone's journey is really unique and different.
[00:20:13] Carrie: Yes. So, is there anything else that you want to share about this launch that you just had in August and what? Um, I mean, I, I think obviously we want to know where to find this information, but is there anything part of this package that you want to share that I haven't asked you yet?
[00:20:34] Michelle: Hm. And it's available on my website, a mamahuhears.com. And it's literally me sending a hug out to those parents. I think I was, I think I created it for the little Michelle's out. I didn't necessarily have the language when I was in grade school to know how to advocate for myself. My mom was figuring out her own way too.
[00:21:04] And it's trial and error, of both of our lives, you know, 30, 30, 40 years of experience of figuring out what has worked for us, going forward with that, throwing away what hasn't worked for us. And we can only learn from other people's sharing is such a gift if we share. So yeah, I thought of this program, it started snowballing into an even bigger project.
[00:21:35] And at one point I was just like, I can't stop like this, this absolutely needs to happen. It needs to be out there. And I have three goals for it. One is that. Pediatric audiology, um, and clinicians, the standard is I think that we all, um, should really strive to be on the same page to strive, to be, uh, in an excellent level of care that we provide.
[00:22:02] I see parents becoming more confident in what to do, where to bring their child and where to go, or how to search for information to navigate this journey. And then I see those little kids being growing up in a supportive village. It really does take a village and a team and really just truly growing up knowing I can do whatever I want.
[00:22:28] I can do. I can achieve anything that I dream of. You know, hearing less doesn't have necessarily have to define the trajectory of my life or what I accomplished. I can, I can still do anything that I dream of, but those were my three goals for this
[00:22:42] Carrie: program. Yeah. Those are excellent goals. And I love the title.
[00:22:47] My child has hearing loss. Now what? it gives you that next steps of where to go next and how does. Take your journey to the next level. And I love the goals for this, but I am going to go ahead and put in the show notes, link to your website so that people can get on to the website. They can read more about it.
[00:23:08] They can find out how to order the book and if they want the book in the video, or if they want the book, the video, and some VIP support with you. I think parents really appreciate that at some points in time. And then for our professionals that there, they can take a look at it as well. And see if it's something that might be a benefit for them and early intervention or that clinic, or just to have as a resource, to, to learn more, um, about this journey, because you definitely have, um, both that professional and personal expertise with really.
[00:23:43] Like you said it speaks from the heart too, and that it gives everybody a big hug because you have so much empathy for what you do. And so much insight into what you do, that parents are going to really value this resource. So thank you for coming onto the empowEAR Audiology Podcast and sharing about this wonderful resource.
[00:24:06] And I hope that other parents and professionals will take a look at it and get ahold of you to find out more information.
[00:24:14] Michelle: Yes, absolutely. Thank you so much, Carrie, for your time and letting me be here.
[00:24:19] Carrie: All right. Thank you all listeners for listening to the empowerEAR Audiology Podcast, and, um, be sure to share this information with all of those that may benefit from it and have a great day.
[00:24:33] Announcer: This has been a production of the 3C Digital Media Network.