Four Moms Discuss "Get It" Moments

Join me for the “Get It” moments podcast as 4 moms share the importance of parent-to-parent support while raising a child/children who are deaf and hard of hearing.  Research articles and organizations provide service models recognizing the importance of family well being.  In this interview, Nancy, Maggie, Stephanie, and Tina bravely share the journey that they have shared together; highlighting the supportive and learning roles that each have played over the last 10 years.  This emotional interview brings the importance of parent to parent connections to life.  In whatever capacity you live or work, I am hopeful that you will be empowered to foster a new or renewed connection.  

For more information about parent to parent support check out these resources:

https://www.handsandvoices.org/

https://www.agbell.org/

https://pubmed.ncbi.nlm.nih.gov/27249168/

Henderson RJ, Johnson AM, Moodie ST. Revised Conceptual Framework of Parent-to-Parent Support for Parents of Children Who Are Deaf or Hard of Hearing: A Modified Delphi Study. Am J Audiol. 2016;25(2):110-126. doi:10.1044/2016_AJA-15-0059

For more information about Dr. Carrie Spangler- check out her LinkedIn at https://www.linkedin.com/in/carrie-spangler/

For transcripts of this episode- visit the podcast website at: https://empowearaudiology.buzzsprout.com

Transcript

[00:00:00] Welcome to episode 17 of empowEar Audiology with Dr. Carrie Spangler.
[00:00:16] 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 human challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:45] 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 on the empowEAR Audiology Facebook group. transcripts for each episode can be found at www.3Cdigitalmedianetwork.com, the number three, C digital media network.com under the empowEAR Audiology podcast tab.
[00:01:18] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am really excited today to have four parents join me and they have become quite a tribe when it comes to raising their children who are deaf and hard of hearing. There are international and national articles and organization that recognize that for parents, with children who are deaf and hard of hearing parent to parent support is a vital service organizations such as the AG Bell Association for the Association for Deaf and Hard of Hearing, Hands and Voices and others provide service models of parent to parent support that could denies in the importance of family wellbeing and servicing a child who is deaf or hard of hearing.
[00:02:08] The reason that I am so overjoyed about this podcast is because these moms bring this research to life. I am hopeful that our listeners will be empowered to foster this framework in whatever capacity that you serve. If you're a parent, I hope you're inspired to get connected. If you are a professional, be motivated to make important connections.
[00:02:30] If you are a part of an early intervention system, ensure your families get connected. And if you have a hearing challenge considering mentoring a family or connecting with a peer mentor, So today let's get started and I wanted to welcome all of these fabulous moms to the empowEAR audiology podcast. And thank you for being brave and coming on today and sharing your stories.
[00:02:55] So I was just going to have each of you introduce yourselves and just to share a little bit about you and your family and your child on and just a little bit. So everybody got to know who you are and then we'll have some great questions afterwards. So I am going to start with Nancy since I reached out to her first and have her share a little bit.
[00:03:17] I like that is a lot of pressure. But my name is Nancy Larker and I don't know, gosh, like, I guess if you Google me, I'm probably not very interesting, but it would probably tell you like, You know, I I own a business with my husband, a local technology company in Akron. And I dunno, like what it wouldn't tell you, however, is that like, I love the beach and good food and wine, but most importantly, I love my three kids, so I have three kids and my oldest is my son and he's 11.
[00:03:51]And he is hearing, and then I have two daughters a 10 year old and a seven year old. I had to think about that. Cause they both recently had birthdays, a 10 year old and seven year old. And both of them were diagnosed with mild to moderate hearing loss at birth. So and they are the reason that I'm here talking to you and with these amazing women.
[00:04:11] So I'm so grateful, grateful to have all of these women in my life. And yeah, so that's me. Hi, thank you, Nancy. Maggie, do you want to go next? Hi, my name is Maggie. I have a husband and two children. My oldest is 11 and she was diagnosed at birth with a mild unilateral hearing loss. And currently is a moderate to severe hearing loss bilaterally, and I have a nine-year-old who is typical hearing child.
[00:04:47]Professionally I work in the early I'm an early childhood intervention specialist for families that are aged at birth to three with autism. So that's the shortest bit of my professional and personal life. All right. Thank you, Stephanie. Hi, I'm Stephanie. I have a husband and three kiddos. My oldest was born with a bilateral, mild to moderate hearing loss.
[00:05:17] And we went through some trials with her. They didn't think at first that it was actual loss. They thought she would recover from it from fluid. And thankfully we did our follow-up visits and found that it was a permanent loss for her. Then I have two younger ones who are I didn't, I don't know if I said Austin's 10.
[00:05:37]The two younger ones are seven and five and they're both hearing.
[00:05:45] Hi, I'm Tina Pudelski . I am, I have a husband as a says, I love how we just turn them as husbands with no names. Let's just keep it that way. So I have a husband and I have two kids. My oldest of which was born with bilateral profound hearing loss. She was implanted and that was at birth. I was diagnosed with a newborn here and screening.
[00:06:08]She was implanted five days before her first birthday, and she is going to be she's 10 and a half right now. And I also have a nine-year-old hearing, typical hearing child. I am currently the Ohio and voices board president, which is a parent support group and, and also an advocate for other parents with the hands and voices community.
[00:06:35] So thank you for having us. Yes, thank you for being here. And I just wanted to, for all of our listeners, just to talk a little bit about that, there's several different articles out there and the audiology world that talk about a conceptual framework for a parent to parent support for parents of children who have children who are deaf or hard of hearing.
[00:06:58] And within that conceptual framework they really recommend that parent to parent support is critical. So I that's why I want this conversation to go with all of you, because I think you bring. How this parent to parent family to family support really direct, directly impacts all of you guys from a more personal level.
[00:07:22] So I'm going to just ask some questions. I'm going to have you guys determine who might want to take the lead on a question cause you guys know each other the best and we'll just kind of go from there. So I guess my first question to all of you guys is how did you all get connected initially?
[00:07:46] Oh, no, I'll go. So we all met through the regional infant hearing program, which was a local at the time. There was a group that was put together by the regional infant hearing program for. Parents and families of children with hearing loss. And so we not only got to meet each other there, but we got to meet with other professionals and audiologists, speech pathologists, people who were working with our kiddos intervention specialists.
[00:08:17] And then we also got to meet other families, which was really, I think, helpful. I know it was helpful for us and really impactful. And that's just, that's where we met and we connected. And while that group is no longer what it was when we were, when we were there, we have continued our friendship and you know, continue talking with each other and some other people that we've met through those channels as well.
[00:08:43] So it was. It was, it was a really good experience for us. It, it brought everyone to a personal level and gave us a chance to relate to one another where, and meet each other where we were at the time and go through kind of use each other as a sounding board and a brain dump at times. So, so one thing I would add is as somebody that came into that group a little bit later kudos for the group, for the professionals who brought that brought parents to parent support as an opportunity.
[00:09:15] First of all. So that's the big goal there, but coming into that group my first day there, what I find is really important that I tell other families is the first support group I went to. I left and I cried. It was not this like magical, wonderful moment where I was. Excited. So, you know what we are today doesn't necessarily represent all the emotions that can happen being around other parents.
[00:09:50] So having other parents, as a support have hearing other stories can be supportive and helpful, but also hearing other people's stories can make you sad. And that my very first support group was sad for me. And I got in the car and cried, like, didn't wanna go back. I did want to go back. But you know, you, it's really easy to compare your child to other people.
[00:10:12] Yeah. And I think that's just what people do. I think moms do it really well, and that was hard for me to, to be at my first group. So don't let that stop you. I think it just kind of shows the trials of being a parent when you don't know what the road is before you A little sad. Sometimes it's little happy.
[00:10:36] So the end result of this group is definitely, I think we remember all the positive things. I don't think we're we're at the end result. So now we are on a continuous journey, not the end, but it's funny. You said that because maybe you did come in. I actually met Maggie before. I think I met Stephanie and Nancy at my house because Maggie did Caelen's nine month or nine month evaluation as a professional.
[00:11:05] And then I remember her at one of the, and they weren't support groups. They were playgroups. We had a great early intervention team, with RIHP three awesome ladies who put parent support ahead of everything else and brought us together as playgroups. And then it turned into a parent support. I don't remember, Maggie probably Caelen was like 18 months old.
[00:11:26] Maggie grabbed my hand on the way out and said, do you remember me? And I said, I think so. And she said, I was at your house. And then she's like, my daughter here's my daughter. And she was diagnosed as well. So, and I remember Stephanie first day holding Austin, who was a tiny, she looked like a newborn and she was probably a year.
[00:11:46] And she was just, we're all going through the initial stages together, all babies, all trying to be to get through it and figure out what was going on. And so we had a platform, we had a place that was safe. So it was, it was good. It was going to be a part of, but not the end result. Definitely not the end result.
[00:12:08] No, we're, we're still midway through it, I think. Do you want to add anything else, Stephanie? I, I mean, that's how we met all through the playgroups and everything, and I think it was kind of. Neat that we all are. We all have girls that are diagnosed with hearing loss and they're all right in the same age group.
[00:12:30] So not only are we support for each other, but they can be support for each other as they get older. So, you know, we obviously this past year, we really haven't been able to get anybody together, but we do still try to get together with them once in a while and do some activities and things. And so they can at least see each other a little bit, know that they're not the only ones out there.
[00:12:54] Yeah. Which is really important too. And I love what Maggie said about taking that first step, even if you don't want to, because after 10 years look where you guys are right now and you still continue, the journey will never end. So even when the adults you're still going to be that support for them no matter where they are, but I wanted this kind of goes into another question because I know you all met.
[00:13:21] Around the same time and your kids are about the same ages, but they talk about in this revised conceptual framework about the learning parents who is characterized as having a child that was recently diagnosed as being deaf or hard of hearing. And then they talk about a supporting parent who is identified as having kind of lived through it and have having a child with hearing loss.
[00:13:44] And I know all of your kids at about the same age and you've been in this journey together, but do you feel like you have supported, identified these different roles at different parts in this journey together? I think I want you to cop. I want you to talk, Oh, sorry. No, it stayed. I'm going to jump.
[00:14:03] I'm going to jump in on that one, basically, because for a long time up until two months ago I was on a different path still on the hearing loss path, but Caelen had cochlear implants, which yes, it's hearing loss. It was a different different Avenue up until two months ago when Molly joined on that path as well.
[00:14:26]So I think that we have flipped over the past 10 years, whether it was with Nancy's two girls getting diagnosed, and one day it'll be going an IEP meeting, or I'm going into a booth test. What do you think, you know, what do you think? And then the next day that somebody else could be doing the same thing.
[00:14:45] And I think all of us, and I know every can speak, we'll speak up as well. I think all of us played both parts, hands down. Like it could flip within an hour of I'm going into my IEP meeting. I need the support I'm going into this, but no matter what everybody has done the supporting parent role. I met some of my best friends right here, they've sat with me through chemo.
[00:15:11] They came a surprise, surprise me when I was getting an infusion and showed up at the hospital. And they're not just for our kids, they were for ourselves and our marriages and our lives. And so, yeah, I would say a similar thing. I think that even though our kids are, that was interesting when I read that part.
[00:15:30] Carrie, when you, when you sent us this draft ahead of time, was, Oh, am I a supporting parent or am I a learning parent? And I think that I absolutely agree. We have all intertwined and been the other one at some period in time. And it's not just about your kiddos. It does become more. So, but through every transition.
[00:15:54] Yes. And I don't necessarily think that learning parent has to be the one with the younger kid and vice versa. It's just, I mean, cause our kids aren't even all the same. What I love is that our kids aren't even all of the same type of hearing loss. So we began, I began as a mild unilateral. I thought I didn't even belong.
[00:16:15] I was like, Oh my God, my kid barely has any kind of hearing loss. I shouldn't be here. So I didn't go back for a long time. But we all like span the different hearing continuum and I don't think you need to be a learning versus a supporting it's all changes at any given moment. Yeah. Anybody else want to jump in?
[00:16:40] I agree though. I think it's almost like a continuum that you just continue depending on what situation you might have to be going through or what comes up. And it's always going to change. And I know, you know, from a personal perspective too, like I am an audiologist, but just went through a cochlear implant journey.
[00:17:01] And I reached out to my audiology friends who have cochlear implants, and I learned so much from them going through that journey and where another situation I might've already had a different experience and was able to be more in that supporting role instead of the learning role. So I think it changes and continues to change throughout life.
[00:17:22] Yeah. I'm sure there's a lot of research on just that if you look at transitions with people but one of the things you said, you're a professional and you're. You have personal. And I think so those are the things that have just personally happened to us. I was a professional in a different way that may this highlighted this.
[00:17:41] So some days I did talk to the ladies as maybe more of a teacher or an early intervention specialist, then I put my professional hat on. But yes, hands down. I can absolutely attest to the fact that, you know, as my own child, Molly has went from a unilateral hearing glass to now being a bi-modal hearing user.
[00:18:06] I have experienced the child at all different levels, and I don't necessarily think I had to go to a new support group to get that parent having open hearts and wanting to listen and be heard at the same time, kind of would help you get through that continuum. Maybe it's like an infinity continue. It just changes all the time.
[00:18:30] Yes. No, that's great. So kind of going into that, cause this is getting emotional, but what are the emotional benefits of being connected and, you know, encouraging the other parents to be connected if they're not connected. Yeah. I think Tina nailed it on the head. With that last one when she said, you know, it's not just about our kids.
[00:18:53] Yes. Our kids brought us together. That is how we met it's because of them that we are friends, but our friendship has just gone so much further. And I think we could all agree that we just get it. And, you know, as Maggie was just saying, sometimes we have to know when to change hats, you know, that professional hat, that friend hat, the mom hat, the, whatever that support or learning hat might be in, it's just, it's just knowing like, okay, you get it.
[00:19:22] And sometimes it's, sometimes it's validating the other person's feelings and sometimes it's offering to help research with them. Sometimes it's, Hey, I'm having a really crappy day. And it's like, can you just cry with me? Cause I just need somebody to cry with me. Like we we've seriously experienced all of that together as, as friends in one way or another.
[00:19:45] And. I think the other thing that we really connect well with on an emotional level is just celebrating victories. So we have, like, I think any parent who has a child with different needs can, can relate to the fact that there are various victories that need to be celebrated and whatever that milestone is, it could be very different.
[00:20:08]And so no matter what it is, we celebrate in those together. I, I remember the day that Tina came in and said that Caelen said the word cookie, and it was like, we, we knew like she can hear like, you know, it's, it's just, it all came together because she heard the word cookie and she said the word cookie and.
[00:20:29] I mean, that was huge. It was huge. And maybe not every parent would feel that way, but we felt that way because we knew how, how important and big of a milestone that was at the time and still to this day, things like that. You know, whether it's our kids, you know, accomplishing goals on IEP or whatever, it might be like, we know how to celebrate those because we understand how big those are for one another.
[00:20:57] And it's, it's helpful to have each other in those types of situations. So I think that, you know, we're able to just connect on that level. Can I piggyback on your, get it moment? I think the, get it moment too. And I like how you did expand it beyond just, you know, this category of kids. I think that when you put it a group of us together that get it.
[00:21:21] So. It is nice to look across the table or whatever, and be able to know that she gets it or he gets, you know, that the parent across from you gets it. I've run a lot of parents support groups for kids, with parents, with autism. And it's even though every kid with autism is different. Every single kid with hearing loss or deafness is different, we're all different.
[00:21:47] But as a parenting experience, if you hear another parent and you just get it. So it's just so nice to be heard. And sometimes you feel like an outsider as a parent. If your child is different from the norm and you don't know where to place that quite yet. So I do think that parents, the parents' support kind of helps us.
[00:22:11] It's nice for professionals to hear us, but another parent that gets it, the get it factor is huge. Huge. Not another example of that I wanted to share was the day that my daughter had to take her hearing aids out and walk by herself, down to the swimming pool without me, like really far away. She couldn't hear she's at a moderate to severe loss at this point.
[00:22:38] And I wasn't allowed to be near her. And I'm sitting on the phone texting like, Oh my God, my like I'm watching her. And so I'm texting a blow by blow of I've. There's nobody there to talk into her ear or help her. So that's, so it was like in real time support, so it can be IEP victories, but it can also be the, I don't, my husband might get upset with me if I text him one more time.
[00:23:10] So. I'm going to go to you guys. I remember that day you were at the swimming pool. So clearly too. I really do. Like, I remember getting those texts and I remember the parent, like, it was sort of a mixed thing for you. Like there was some panic, but at the same time, like there was that, okay, this is like, she's starting to feel a little independent and this is good for her, and this is healthy.
[00:23:31] And, and I think that's another way that we can kind of balance each other out too, because we can say, Hey, Maggie, we know this you're freaked out about this, but guess what it's going to be okay. Like, and we can kind of talk her through it and keep her calm enough to let the experience happen and, and sorta just soak it in and take it in.
[00:23:50] And that real time, I agree with that a hundred percent. So then I was able to share the victory of the picture of the swim teacher laying on the side of the pool with her legs, doing scissor chops, to try to show my daughter what she wanted her to do. And I was like, it's at that picture, I was like, it's going to be okay.
[00:24:14] It's going to be okay. I don't like you guys are released. You're fine. But that's, it, it gets emotional. It gets like sad too. I mean, and I think I just hit on another thing when maybe your spouse or your mom or your dad can't handle one more, more conversation with you. It's nice to talk to another person even before we were really, really emotionally close.
[00:24:38] It's still nice to talk and reach out to another person to hear what their experience was, what their thought process was. I don't want to give the impression that you have to be besties to have this situation either. It's just. It was from listening and sharing and the, get it factor that I think this can happen for people.
[00:25:00] No. I, I think that is so critical, critical that get it at moments and the blow by blows and the celebratory victorious moments I really important to have. And like you said, nobody else gets it the same way as like the example of, you know, your child says cookie for the post time and someone that does not have a child that's deaf or hard of hearing would be like, Oh, okay.
[00:25:25] But you are like, woohoo we're getting the balloons out. We are celebrating, right. I mean, this is a huge moment. And by having that support, you can celebrate those victories too. So kind of going from that emotional part to more than knowledge part, how do you feel like being connected to each other has helped you with like getting knowledge or advocating or even, you know, your daughters being more advocates for themselves.
[00:25:54] Okay. I'll start this. So. Austin as you're familiar, Carrie, I took a very long time to get her to the point of recognizing when her hearing aids died. She's finally doing it on her own this year. And yay. That's a lot of that is the school and the team that was working with her regularly every day.
[00:26:16] But I think also some of it was seeing these other girls who are her own age, knowing when their hearing aids are that and talking about talking care of their own devices. And so she now she pretty much does it all on her own. I do help her clean them. So cause you know, she's not perfect, but it it's a big step for her too.
[00:26:40] Become more independent. And she's telling people when the FM system is not working anymore, she's advocating a lot more. And I think part of that is she's seen these girls do it when we've been out. Molly was advocating for herself and also saw it and she was like, Oh, I can do that too. So I think that was a big step for her.
[00:27:02]And so, you know, just having that for her also as far as the knowledge goes, I have a coworker whose daughter has been having a lot of problems with her ears. She's not diagnosed with hearing loss or anything, but she's had multiple tubes and surgeries and things going on. And she's been in a lot of ear pain recently.
[00:27:24] And one doctor told her mother that is just psychological and the mom was very upset. She was like, no, that's not, that's not what's going on with my kid. So I was able to reach out to these guys like, Hey, You know, this is what's going on with Vanessa's kid and you guys got any ideas who, who can, who else can I send her to?
[00:27:43]So they were able to give me some, some ideas of other things that it could be, or some testing that she could have done in other doctors for her to go see. So it's, you know, when you have questions we ask and if we don't know, we can help find the answers. Anyone else want to add onto it? That's okay.
[00:28:06] This is all good information, but other parents and professionals to hear all over the United States and beyond, I mean, I think that's, you know, the original question, what was the original question? So I make sure I zero back in, sorry, you don't have to more like increasing your knowledge with each other.
[00:28:24] So how does that help you as a parent? How does that help you a daughters to be more confident or advocates and who they are. I think that seems to me to be the stem to the ongoing cycle of who's a supporter and who is a, a learner at any given moment and age doesn't make that difference. Exactly what kind of hearing loss or deafness doesn't make that difference.
[00:28:50] But it's the ability to reach out and touch someone, you know, know that you can call a parent to ask for, have you guys heard about camps? And then I hear about one of you that knows about a camp and I'm like, tell me about that camp. I want to know. So you just reach out and you ask questions and you just get more information.
[00:29:10] And quite honestly, you know, it makes it better for the professionals sometimes too. It may make professionals a little crazy because they have parents that are talking to other parents that it makes them super advocates, but it also helps professionals not have to work so hard cause professionals.
[00:29:30] Don't really have time for beyond Saturday afternoon or Tuesday evening when my kids in swim class, it's really not their role for us to text at five o'clock at night and be like, my friend is going through this issue. What do you think? You know, it just helps dispense that information amongst people just so much easier.
[00:29:52] So I think that, I think I just sort of went into the answer to another question, which is what is the benefit? So parents and professionals, and it's just, it helps, I think it helps professionals have a less harder jobs to do. Some of that we are so needy parents are so needy it's from their professionals that they work with.
[00:30:17] And the parent to parent's support kind of just helps you have. More support. So your professional can be the professional a little bit, even though they're empathetic and wonderful and supportive some of this emotional stuff or just networking is really helpful for parents. So we can, we can do that a little bit on our own.
[00:30:42] I learn so much more than one professionals experience and Maggie, what you said is so true because there's been other research about other support organizations and professionals kind of being involved, but more a fly on the wall. And what they found is that professionals learn more about their own practice from being around individuals who are actually going through the process than they do from a textbook.
[00:31:10] So kudos to you guys as parents for being able to share your own experiences, because otherwise you wouldn't know that like the, you know, swimming like, okay, well, how hard is it for the coach to get out on the side of the pool and just demonstrate really quickly? Because obviously you can't see your, your legs underwater, but it's a simple tool, a trick that I can make somebody else's life easier.
[00:31:41] And so what kind of parent though, and what kind of talk it? What did I have to do to prep that teacher, that my daughter is even coming down there. Right. So then you ask your other parents, people, would you guys call, would you email? What would you do is that normal for us call should be called, you know, you're gonna go through a little bit of all that beforehand.
[00:32:06] And I love what you just said about professional as a professional in the field, myself running parent support groups has probably been a huge factor. And what kind of professional I am back in only to being the parents of my own child. Definitely. And practice kind of professional. I am, but professionals gain so much from hearing, hearing parents too, that we all need each other.
[00:32:38] We do. At parents, a parent can be really good. So I hope lots of professionals listened to this cause they're going to learn so much from all of you guys being connected. So have you found, and I think Stephanie talked a little bit bit on this, but having your kids being connected to each other, what kind of benefits have you seen in your own kids' growth or acceptance of their own hearing challenges?
[00:33:04] Anything? I was going to share yours. Oh, go ahead. Do it. I, so Tina and I had to have a very special moment right now, which is that my daughter transitioned from bilateral hearing aid to wearing a cochlear. And so, you know, before even family members, the first people I told were these three and then Tina's like gone on like speed dial.
[00:33:33] If we still had that for everything. But what was the most profound to me? So Tina and her family did everything and these whole group of girls, but Tina got more of it a little later. You would think that all the support was from Tina to me. And then I teared up when I realized that you had sent me a text, or I don't even remember what it was, where, where she said that Caelen doesn't have another friend with a cochlear or no, my daughter, Caelen said that to my daughter on a message.
[00:34:08] And I was so emotional about that. Like I was the one like receiving so much from Tina in this process, but I never, I never thought about what my daughter was like giving Caelen I'll jump in at that point. Well, yeah. The it was, it goes back to as well, even Brian Maggie's husband was sending my husband, Jeff, an email during the surgery.
[00:34:36] And I didn't know until a couple of days later and Jeffrey said something about it. So it's across the board, I family member to family member. And then Caelen had Molly and they would write each other. And I said, she would tell me that she would check in on her just to see how it was doing, how activation was giving her tips and tricks.
[00:34:55]I have, I signed Caelen up earlier with a magazine for a pen pal and that lasted for a little bit. And then they just got busy and stuff like that. So they tried to match her up with somebody to cochlear around the same age. And those connections are so imperative to them. And I could tell even recently, you know, Because of the pandemic and everything else like that.
[00:35:19] And they, she, we, haven't gone to the groups that we've gone to, right. The camps that we've gone to, or she hasn't seen her for friends to just be around them and be yourself. Yeah. Recently we went to dinner a couple of weeks ago. It was just my husband, Caitlin and I, and at the end of the night, it was a smaller restaurant.
[00:35:40] A gentleman walked by, we were talking about Molly and we were celebrating the fact that she was at 35 decibels in the booth. And we were talking about at that dinner and it was just these two tables up in this restaurant and counts like how that's awesome and we're going through it and everything else like that.
[00:35:53] And. This woman turned and said to us, she's like, are you, do you happen to be talking about cochlear implants and nobody that who didn't know a booth test decimals? You know, it sounding like a duck or whatever. Nobody would know that unless, you know the thing. And she goes, do you happen to be talking about them?
[00:36:10] And Caelen's like, well, yes we are. While her husband had gone to the bathroom and I'd been looking at the one side the whole time with nothing. And as he came back to the table, while there was a cochlear implant, turns out implanted, or they have the same surgeon now, at university, and they just started talking and joking and he, they were comparing their cochlear’s coming off on he's a machine.
[00:36:34] He works on machines and his coming off and kills like, Oh, mine does that as well. But she needed that connection, whether it's through ages or whatever, all of a sudden her soul, her little soul seemed filled just from seeing somebody like her. And being with and she left and she felt she was a hundred times better and at a hundred, like a better mood than she had been in weeks because she saw somebody that was just like her randomly out in public.
[00:37:05] So that, that connection, that kid connection is so important. And it's not just for us, but it's it's for the siblings as well. I mean, we could go on and on about the, the bond across the boards and everything else like that because the sibling connection is also special with a lot of, you know, the hearing kids.
[00:37:26] So talk about a negative. This is like super wonderful that I will say sending my daughter to camp, to see other kids. That's cool to see other kids that were on the spectrum from ASL signing deaf to mild. By bilateral hearing loss. You know, Molly came home from that first time and wasn't quite sure, you know, it, it can seem a negative.
[00:37:57] She wasn't quite sure she was liked them. And I think that, that, although that seems a negative and it, it gave me pause that time I had, but now kind of if I were to share with another parent, seeing those differences, which kind of does show that everybody is still different, that the hearing loss doesn't make you kind of like a friend or a not friend are similar or not similar, but it really can be just the connection you make or the longevity like with Austin and Stephanie's with.
[00:38:36] Stephanie’s daughter, Austin. I feel like Austin's had to watch the girls for a longer period of time to feed that happened over time. And without that longevity D to C, it can start different. It can, it's not over yet. We don't know what that's going to look like, but we're really just embracing everybody is nobody's really the same.
[00:39:00] And yet there's this beautiful thing that I think Tina's explaining, which is, but yet there's still a beautiful thing that will happen when you feel the same. That's just life. So I think it's the nuance that can make parents, parents support positive and sometimes momentarily feel negative. I think that's my theme.
[00:39:23] Right? The first time I went to group, I cried. It didn't feel super positive, but the longevity of living this out, knowing that I could pick up the phone if I had to. And then I stopped going to parents support groups. So my kid was two and a half and she progressed, I knew these women were here and it was the professionals that reminded me.
[00:39:47] We have another quarterly group and we'd love for you to come. When I was like, ah, I don't know, I'm not ready. I don't think I have enough in common. And I put it off from very young to, we were almost three and I only came back because my kid progressed and I was like, I need these people, but knowing they were there.
[00:40:09] So as a professional, I just went a really far away. But as a, I would say to professionals to please just keep reminding your parents that there's other parents out there, because what may seem negative might not be negative. What seems positive? You know, you don't know what any parent's going to get out of it, but you do know there's these parents out here and they're willing to share their phone number.
[00:40:33] And so don't give up on them one time because it's a process that changes what was okay. Tomorrow, yesterday might not be good for me tomorrow. So professionals need to not push it, but absolutely continuously. I would think, make it available, know that parent who might say, would you mind if I shared your phone number with somebody?
[00:40:55] Because now all four of us I know have had random coffee chats with people because a professional asked us to and shared our phone number. That's okay. I love it because, well, I guess a couple of things kind of come to mind. One thing, if you go back to that learner supportive role, I can see like, you know, Caelen and Molly
[00:41:21] I mean, that's just that learner supportive role right there. And I'd be like kid way. So Caelen reaching out and saying, Hey, you know, I went through this and I have this. And I'm feeling validated that though, someone else her in that role. But you should, Tina about the restaurant I wanted to kind of go off of that one, like meeting someone, an adult who was a little bit older from your kids.
[00:41:47] Do you feel that it's helpful for your own kid to meet other adults or like teenagers or someone who's older than them? Who is deaf or hard of hearing. I'm going to jump in on that first, the only cause we do, we do go to several camps. We travel out of state and we go to a camp with a group Songs for Sound.
[00:42:10] And it is for families with deaf or hard of hearing. And they have the panels. And the last time we went, it was right before lockdown. About a week before lockdown. The last time we left the state, I think, and Jamie was her main focus was to bring in teenagers for this panel. And we sat there and Caelen and her friend, Lily did not want to move.
[00:42:35] Now I will say this other family, this goes back to parent parents support. We met and she would be in the fifth week. She would be the fifth part of our group if she was in Ohio. And we've met wonderful families from all over the country, these events, but this family specifically as well, she is just like us.
[00:42:52] And they are some of our best friends. And her and Lily sat there and didn't move for three hours while these teenagers answered the questions and everything else like that. And she kept raising your hand. I was where I was trying to hold her hand down because let other people talk. But when we left.
[00:43:11] You know, she came home from that weekend and they were only in school for two weeks, I think, before they got kicked out. But in the two weeks she learned something that she didn't know to advocate on or something to ask for. And she felt comfortable. She came home and I remember her saying, she's like, mom, I listened to what Lexi had to say.
[00:43:29] And I went to school and I asked him to repeat, repeat it this way. And she goes it worked. So those panels, those kids, whether it be a parent panel, which all of us have sat on together. And I, as we're sitting here talking, I forget all the times we've sat on whether it Kent state office at Kent state together next to each other and told our stories and cry or sat at, you know, the family center, you know, telling our stories next to each other.
[00:43:54] And it's funny how 10 years later, you forget all of these situations where we've done this and all the people we've met, the professionals, the interns, the, you know, the kids coming up with it. But. We've sat next to each other, telling her stories over and over again to people doing this. And I don't know if it ever will ever, ever stop learning, like you said, Carrie likes Nancy said
[00:44:22] Like whether it be college age or high school or we're going, or junior high level. Now most of us just having that connection and having them listen, having us listen, it's a never ending cycle being grandparents going forward. I mean, I could see that going on for years and the continuum it's extremely important that kids have access to.
[00:44:47] The old to the older generation or somebody that is like them, but they've walked the path before and they don't see something that, or they tell you something that maybe you just don't see right now, if that makes sense. I know I'm feeling it. I think you also have to follow your kid's lead and Molly wasn't as into kind of getting to know people.
[00:45:11]But now she is, and I can feel it. And I do find for me, I'm ready. Like I think she does need more older kids. Cause they, they hit the point to where I think your kids just like older kids, they think they're cool, you know, and I would love, so I look forward to more opportunities actually for her to either be around physically adults or teenagers.
[00:45:42] Because zoom is not super great for them. So yeah, but I, I feel then as somebody who might not have had as many experiences with my daughter in that regard, I do I feel a missing element at this point that I would like there to be, be more exposure to older kids or adults for sure. Yeah, no, those are all great.
[00:46:08] And I just know that a lot of the kids and middle school and teenagers that I get to work with their exposure to just say, college students and realizing, Oh, they can go to college or they, you know, have a job at wherever. And then I, I can do that too. So it just elevates their self-confidence and whatever they want to do, because they'll see someone else in that role.
[00:46:33] So as we kind of wrap up today, I wanted to ask a couple of kind of ending questions and I know we've talked a lot but kind of circling back around to that parent or parent support. So what kind of last advice would you give parents who may not be connected? And I know you've said it, but I just want to kind of emphasize again, or maybe you've thought of something else along the way about parents getting connected with others.
[00:47:03] And then I'm going to ask the professional question next, but parents first. Okay. So Tina, where are you going to go? No, I was going to tell Stephanie to take this cause she hasn't led yet to you, but Nancy, I want you to leave too. Yes. I was thinking the same thing. I was like, his stuff's going to speed up and she's staying on mute, but also we're calling her out because totally, totally called you out steps.
[00:47:26] I think you should take it, Stephanie, do it. Okay. Pressure's on. Thanks. Well, you guys were doing such a good job of talking that I just felt like I should just be quiet and let you go, you know, I'll add, I'll add to what Stephanie just said. I felt like I had to be quiet there for a few minutes. Cause I, I couldn't like compose myself to talk without crying.
[00:47:49] Like I was like getting a little too emotional and felt like I needed to step back for a minute and like, Neither myself before I took time back in. So I'm back now, but Steph take this one. So yeah, for other parents, I mean, I know a lot of it kind of depends on the area that you live in. You maybe there is not any support groups nearby.
[00:48:14] I mean, if you live out in Montana, You know, where's the closest city to you, you know, what, where are you going to get support from? So I think there, you need to keep in mind that there's a lot of different varieties of support. You don't necessarily have to have somebody that you can go and sit down at a coffee shop with and have a whole face-to-face conversation.
[00:48:35] You can have a zoom call or, you know, just text messages. I mean, we have a group text message that we just keep, you know, back and forth with. And it's not even just about the kids, it's about everything that's going on in our lives. So just having somebody that, you know, you can call or text, you know, like send them a message.
[00:48:56] Hey, can we get on a quick zoom chat? I need some advice. I need somebody to talk to who knows what they're going through, knows what we're doing. And I think just keeping in mind that there are a lot of different. Ways to get support from other parents, you don't necessarily have to meet face to face.
[00:49:12] And like Maggie said earlier, you don't necessarily have to be best friends to support each other and to understand what each other's going through. So maybe you meet one time at some convention for, you know, deaf and hard of hearing kiddos and you just trade numbers and you know, that you can reach out to that person.
[00:49:35]If you need something or just need somebody to talk to. So yeah, to piggyback on what Stephanie said, I kind of feel like technology has almost removed the. Excuse for being, for not being able to reach out for someone to anybody. Really. I think that, you know, there are so many avenues, so between social media and just the, the internet and being able to communicate like that, I mean, like we're doing right now, like we are having a conversation using technology.
[00:50:11]We're not, you know, sitting in the same space, but we are still very much a part of the same conversation. And I think that being able to connect with people is always important. And like Maggie said, it can feel really scary to take that first step, especially if you don't feel ready. But I think that the one thing that I would encourage all parents to remember is no matter where you feel you are.
[00:50:44] Somebody out there can relate to that. And this community of people is so encouraging and so helpful. And also I think willing to wait for the moment that you are ready, but if you reach out and let them know I'm here, I'm not sure. Like, I'm not sure I'm ready yet, but I'm here. And I need someone to know that I'm here.
[00:51:10] People will, people will keep you, keep you in the loop and keep you in mind and, and continue to you know, reach, reach out to you. And you'll, you'll start to make those connections sort of naturally there's lots of online support groups. I think all of us are involved in a lot of like Facebook communities of parents with children, with hearing loss.
[00:51:31] And you know, even if you're not. Going to be really vocal on those sites. I think just seeing all of the other things that parents are posting sometimes is even really encouraging. So maybe starting there, right. Join one of those online communities and just sorta creep for a little bit. You know what I mean?
[00:51:48] Like see what other people are posting and what other questions people other people might have. And, and then when you're ready, jump in there, if you feel comfortable and you'll, you'll find people that you can start to connect with. And it's, it's going to make sense when the time is right, but don't be, don't be terrified of it.
[00:52:08] Just start somewhere. So Nancy just sent me a picture like a couple of weeks ago that I, I totally forgot how I reached out to Nancy, which I personally went through a ton of my child only has a unilateral hearing loss for a long time. And I did not go back to support group and I forgot that I sent. Nancy and I ran into each other.
[00:52:38] This is hard to where I work is also where the infant hearing program is housed out of. And so I would see Nancy at different times on a regular basis, actually, she would drop in, in another program. And so I knew she was going to be there and I knew she would show up at certain time. And I wrote her a note saying, I think I'm ready when she sent it to me.
[00:53:07] It's like, I think I'm ready. Would we. Have coffee because I, you know, my professionals, so what would I say to other providers or other parents to make this next step? I would, I would offer that professionals professionals can really helps say these people are out there. And so when you have a good one or two or three, and you think, I think this would be a really good fit, this is a really great mom.
[00:53:38] Let them know that for parents that received those phone numbers, those names or just know they exist for whatever reason, just you don't like, I love that. Nancy said you don't have to be ready for them because clearly that was my story. When you're ready, you know where to go. So whether that's creeping on social media and you happen to love this one person's responses for everything, that's probably the person you're going to private message.
[00:54:07] You know, we were a little bit more old school and I ran into her and gave her a note. So to get more comfortable, I don't even know if Stephanie or Tina know that I forgot. I totally forgot. It's like, but that's kind of shows you where all as parents in a different place at a different time, and we just need to know those places are out there.
[00:54:29] And then when you're ready, you'll put it. It means you're going to be vulnerable to be open, to make a new best friend. It just means you're being vulnerable to be open, to ask a question about your child, which is super vulnerable. Or to ask somebody else about their child. There's an intimacy there that I think people might be uncomfortable with.
[00:54:53] So whatever way makes you feel the most comfortable, it's, it's an intimacy that can support your decision, making your problem solving, even if hearing another person's story makes you feel like, no, I really do love this. Do you want, okay. So know that if you don't want to do it, it's not time that there may come a time.
[00:55:17] So keep that phone number. So just to kind of wrap up, is there anyone that wants to say any last minute words of wisdom I'm going to, I wanted to piggyback on that last one, too. And this probably ties into words of wisdom, or I wouldn't say wisdom, which is just being a parent. Like we said, you know, putting yourself out, they're looking at the social media, having the access to other parents or other families.
[00:55:45] And, you know, that's important for professionals to realize as well that they have to be willing to listen and listen to their families and they want, and I think that's very important for this field because there are so many different opinions on everything that it's what the family wants. And what is that?
[00:56:05] Families don't know what a squat is, what is best for the family? Because every family is different. We've said it, Stephanie said from like Montana, like that's a different, you know, Kentucky's a different area. All of Ohio is different. You could be in one part and then another County has a different system or set up different support groups, parents systems out anything.
[00:56:29] It's so different. And one story is not the same as another story. And I'm also going to say it as a fam, a family where my child, it was, she was different. And I remember sitting on support groups and not, yeah, I line and not joining it or anything because a lot of it could be, you know, it is great.
[00:56:48] It's the, my child said this, or everything's great when you do this, but there are people behind the scenes where it's not the same and things aren't like, great, or it's not working the way it should or something was. Didn't go right in surgeries or anything else like that. And so there are other, are those people behind the scenes as well that they need the support.
[00:57:10] They just don't know how to go about it because they're not the typical path as well. And so I would say to those families, there are people out there that are listening and other families behind the scenes. It's just, it's going to be the connection through the professionals, through the audiologist, whether it be the educational or the clinical or the speech therapists, or, you know, earlier in early intervention, whatever it is right now at this time it's going to be up to them to be able to provide the initial contact.
[00:57:41] Like we had going forward and make, I think that you've discredited yourself. Cause I think you forgot that the coffee chats that we've held as well early on. And that's probably how we really got to know each other. And I think Nancy and Stephanie were pregnant at the same time. And then I remember being in another support group down in Akron and Stephanie telling us she was pregnant with Casey with the third.
[00:58:04] I think all of it major moments, whether it be Maggie, myself, you know, our moms are sick and at the end and everybody jumping in or camps or, or moving anything, it is always been like at these parents support groups or on our group chats, which it can easily go from one Texts to, a hundred texts in five minutes.
[00:58:28] So. But it is, it's imperative that the professionals provide those contacts or access is its access to the contacts because parents might not want to take it, but at least there's access to different different people in different health groups. So I, we are really going to talk for five hours, Carrie.
[00:58:50] I do, I do want to add to something that Tina said, it triggered something that I think is really important. You know, for everybody here. So we all are hearing parents and we all have both hearing children as well as, or typical hearing children, as well as children who are hard of hearing. And I think that these support groups are equally important for those siblings as well.
[00:59:18] I, I think, you know, my son, he even has met some friends through some of these communities. And I think that there's a lot that they can learn as well. And just, and then there's a lot that they can teach as well, too. So I think that also just knowing, you know, Tina is saying that it's a family, a family affair, really, and it is, it truly is.
[00:59:42] There's a lot of connection there for not only the parents and the child that has the hearing loss, but the siblings as well. So I think that's important to consider as well for people who are thinking about or teetering, should I, or shouldn't, I it's, it can be a lot bigger than just making that connection from one parent to another parent.
[01:00:06] It's truly making that connection from one family to another family. And in some instances, Good luck, Carrie, with all these themes. Just good luck, but I'm just going to say whatever I want to say. Like, yes. So shit, I think about just try, you will never have four people again, you're going to do so much editing.
[01:00:28] Okay. I agree with everybody and yes, I think, I think what's important to note. And this is where I do think my professional place makes me see this one piece really big. When I watch parents of children with autism, there is no one child with autism that is the same, and it's a very similar community.
[01:00:50] And that there is a very diverse, long continuum of how to support your young child with. That might have a diagnosis of autism. It's a similar field here. And I think that what I have learned professionally from listening to my parents in the autism community that I work with is that it's not about maybe what anybody chooses do moving forward.
[01:01:22] It is so much about the, get it factor that another family looks at another family in the eyes. And even though at first, all I saw day one or that one day was what was different and that's really common. You can see so clearly what is different about us, but. Over time and just kind of listening to another person's story can make you start to see what's similar.
[01:01:50] And that is that families are families and we're all different, but we all are to quote maya Angelo. We are all more alike than unalike. There are common themes that you'll always find with just special parents of special needs children. And then as we move into just parents of kids with that are hard of hearing or deaf, there may be a wide continuum of how we treat them or how we decide to move forward or what their families look like.
[01:02:22] When yes, we all four have a lot of similarities in our and our family. And that is maybe what helps us, but we also have all four of us to come in contact with other families and seeing what is different is also so. Hopeful to my parenting process. So there's beauty and finding your tribe and what, and all the similarities.
[01:02:50] And there is still beauty in finding a tribe that has some differences too, but you still learn from it. So we're more alike than not alike. We all have common themes and we all take what we need and we leave the rest behind. Wow. Great. No, I love that. I think that sums up this conversation so well with and I w first of all, I want to thank all of you for being on this podcast, because I know that this conversation is really going to help.
[01:03:22] Professionals it’s going to help other parents. And I hope parents who are not connected yet will be inspired to either get on a little Facebook, creeping and find somebody that they can connect with either privately or on a Facebook group, or do a coffee chat or whatever. And I hope our professionals out there recognized just from this common conversation that get it factor and that get it factor is so important in making sure that families are connected.
[01:03:52] And if they're not ready, that's okay. That they plant the seed and they circle back around at different appointments because at some point in time Parents will be ready. And that's the important part. So again, I want to thank all four of you guys, but being empowEAR Audiology Podcast, and I have followed all of our listeners out there.
[01:04:13] We have a Facebook page, so feel free to follow that and engage in the conversation. And thank you again.
[01:04:23] This has been a production of the 3C Digital Media Network.