Episode 42: Finding Joy in the Journey with Amanda Linscheid

On episode #42 of All Ears at Child’s Voice: A Hearing Loss Podcast, Colleen and new co-host Julie are joined by guest Amanda Linscheid. Amanda is a mother of three and a farm wife and nurse in rural Wisconsin. Her daughter Evie, was born with profound hearing loss. For over 10 years she has shared her family’s hearing loss journey. Colleen and Julie talk to Amanda about finding joy in the journey.

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Episode Transcript: 

Colleen: [00:00:00] Welcome to All Ears at Child’s voice, a podcast discussing all things hearing loss. We aim to connect the parents of children with hearing loss with the professionals who serve them. And now to start the show. Hi, this is your co-host, Julie. And I’m Colleen. 

Julie: This week on All Ears at Child’s Voice, we talk to guest Amanda Linscheid.

Julie: Amanda is a mother of three, farm wife, and nurse in rural Wisconsin. Her daughter Evie, was born with profound hearing loss. And for over 10 years she has shared her family’s hearing loss journey .

Colleen: and Amanda is a good friend of mine. She and I have been on this journey together since our kids were pretty young.

Colleen: We met through the HearPeers mentor program. Former guest Scott was also a HearPeers mentor, and Evie and my son Liam are. Right about the same age, same grade. And so we have sort of tracked with each other along the way. We’re constantly, over the years have texted like, “Hey, is this happening? What are you doing about this?”

Colleen: [00:01:00] What’s, what’s going on here? And it’s been really fun to have another fellow parent in this, in this journey. So I’m super excited to have Amanda here to chat with. Amanda, to 

Julie: start, can you tell us a little bit about yourself, and a little bit about Evie.

Amanda:  So I’m a nurse, like we’ve said, and we live in very rural Wisconsin.

Amanda: We are a farm family, so my husband Jason farms corn and beans, as well as raises dairy heifers. And we have three children. Our oldest is Lily, she is 14, Evie’s right there in the middle at 12, really, almost 13. And if she would be asked, she would definitely say 13 already. George is our caboose at 10. So Evie was born with profound hearing loss and diagnosed thankfully, really early, and so that really helped our journey in the long run.

Amanda: Yeah. 

Julie: Tell us a little bit more about her diagnosis. Can you tell me more about that? Was it at a newborn hearing [00:02:00] screening? Your experiences with early intervention? 

Amanda: So we were really fortunate in a way, so when we were in the hospital, they told us she did not pass her newborn screening. Come to find out later that they actually tried six times to get her to pass.

Amanda: So I’m really kind of thankful that she didn’t, cuz it really got us started on our journey and our trajectory sooner. So then when we went and then went to, I should probably back up just a bit. So it’s important to note that we live in rural Wisconsin and, and much of Wisconsin is rural. If you take out Madison in Milwaukee,

Amanda: The predominant locations are rural. We live in a small town of about 450. We live an hour west of Madison in two and a half hours from Milwaukee. And then after we got her diagnosis, we didn’t have a lot of great resources right away. So we went to a local audiologist and she, or she failed her newborn screening.

Amanda: We went to a local [00:03:00] audiologist and she kind of said that maybe it’s just fluid, let’s just give it a little time. Something in my mom gut that I’m very thankful to have said, Nope, I just think it’s time to move on. And that sort of started our path to discovery, if you will. We went to Madison for a firm diagnosis.

Amanda: So Evie was about two and a half months old when we got our profound diagnosis. And three months old when we started hearing aids. So that’s kind of how we all got started by some very interesting phenomenon. The day after we got our firm diagnosis, there was a cochlear implant meeting in Milwaukee. And I just happened to hear about it.

Amanda: And so we, we attended that and that was sort of what we had planned to do, but we also knew that there was a chance she wouldn’t be a candidate. So right from birth, we started all signing very, as much as we could. Our journey was a little rocky because, [00:04:00] resources were a concern. We did quite a bit of signing with Rachel Coleman in our living room.

Amanda: And, tried to find resources. My daughter, Lily, my oldest, is actually a pretty good signer being that she was just 14 months old at the time. We were kind of intensively trying to learn sign. She picked it up really well. So we started our cochlear implant, a lot of, lot of appointments, lot of.

Amanda:  things you kind of have to check off in, in doing that, we found that Milwaukee was really the most comfortable location for us to, to have those appointments and things. So we would travel about two and a half hours one way. So five hours, one trip to get there. What we knew was we could not pick our farm up and move it.

Amanda: So if Cochlear implants and if Evie wasn’t able to be mainstreamed, we looked at our options, whether we had an apartment somewhere closer to an amazing school for Evie, or [00:05:00] we just weren’t really sure. So kind of let all our options open. But being a farm family really, it grounded us in a way that was hard at times and wonderful at others.

Amanda: It made us remember that this was our home and where some of our people were, but it also made it a bit hard to look at our life. And see what best environment for Evie was. So we all kind of had to try harder to find those things. It was our goal initially with Evie’s cochlear implants, that she would be able to hear the large machinery on our farm.

Amanda: That she would be able to be safe on our farm. Hearing is such an amazing tool when it comes to farming that we don’t really think about. We listen for animal sounds and we listen for safety so much. That we are just super hopeful and if the cochlear implant journey worked out for us, that [00:06:00] it would be an option for her to be really safe and we would make whatever else happened after that work in the long run.

Amanda: We always wanted the kids to be able to go to school together. If possible, and there were times they did and times they didn’t. Early on in our journey, we found this really wonderful private preschool. So we sent Lily there and it was amazing. And then it was a good follow up with Evie. This, and we were just very fortunate to find that real close to home.

Amanda: Not necessarily our SI school district, but a district over. So that was kind of how it went for us. We knew kind of what we were looking for, and then we just found a way to make it happen. Wasn’t always easy, but we were really lucky in that we did. Did always find a way. We had amazing birth-three, which is Wisconsin’s early intervention program.

Amanda: We had amazing providers. Had never worked with a kid with cochlear implants. They had never [00:07:00] worked with a profoundly deaf child, and so they were learning just as much as us, but we were really fortunate in that they were willing to learn. So that’s kind of how early went. Obviously the hearing aids didn’t work out for us and the cochlear implant, check boxes all added up and that is the direction we went.

Amanda: So she was implanted and activated or switched to on just after her first birthday, which will be coming on up on just 12 years here this summer she’ll be hearing 

Colleen: so. So I just wanna go back to something you said about how for the, for you all, the cochlear implant success story was like just being able to hear the loud machinery.

Colleen: And I’m wondering, was there a moment when that started to change? Like when you started to realize, oh no, actually we can, we can expect even more. Yeah, 

Amanda: I, I think there was, there definitely was. I think there was a lot of little moments when you were like, wait a minute. We totally underestimated this. [00:08:00] I was fortunate enough to be given a journal specifically for a hearing loss journey.

Amanda: It was called HearPeers My Diary, and I started making notes when she was switched on and kind of following along with this and about, you know, you still kind of doubted yourself as a mom. This is a lot. We made it through this, but are we getting somewhere? And I think that one moment specifically when both my husband and I ugly cried, was one night we were putting Evie to bed.

Amanda: And her ears, her, her cochlear implants were actually off, but, we signed her, I love you. And she voiced back Love You. And that was like the moment, like, whoa, okay, this has all been worth it so far. And we totally underestimated what our initial goal was. I think it was safe. To underestimate because anything we got over and above that sort of baseline safety was just like all these [00:09:00] wonderful surprises.

Amanda: And she continues to give us more each day. She’s currently in choir and band. She plays the saxophone. She did, solo and ensemble, which is like a band competition. She played the saxophone with her sister, which was really interesting cause they don’t even always like each other. And they got like the highest rating, a number one rating, which was really neat.

Amanda: And she talked to the judge and that’s all like, well, I just didn’t know this was all gonna happen. For all of us and her specifically. I love that. Amanda, I have 

Julie: maybe a vulnerable question for you. Is it okay if I ask? Absolutely. So I’m a new mom. I have a nine month old at home and at two and a half months, man, that that was difficult.

Julie: Just with my child is hearing he doesn’t have, you know, any kind of medical diagnosis. And as a new mom, I know,[00:10:00] Evie is your second, but 

Julie: still fresh out of postpartum was very difficult a few months in. Can you tell us a little bit about your feelings, your support, what kind of support structures you had, people, places, you know, what, what that was like for you as a mom?

Amanda: Absolutely. So yeah, Evie is my second. So with my first, I was the kind of mom that read all the books. I talked to my girlfriends who already had kids regularly. I did all of the things, all of the things that, all of the email lists you sign up for, and all of those were pretty spot on. Evie or Lilly was very, very typical, if you will.

Amanda: Then Evie came. And Evie made me realize on so many different levels that I had to find people. There wasn’t, there wasn’t a blog. Or, or a email subscription that [00:11:00] came right to my inbox to tell me about how Evie was gonna progress. There wasn’t a group of moms that I could just call up or send it, send a message to, Hey, what are you, what are you doing about this?

Amanda: They’re very early on, I had this like thing where I was like, I don’t know what toys to buy. And I remember it being so upsetting to me, like, how can I not provide the right toys for my child like this? This shouldn’t be this hard. So what happened was I started looking for my people, my people to help me.

Amanda: support Evie. And they were different than my people that have always loved me, right? It wasn’t my high school girlfriends who have been my, my absolute go-tos for so long. It wasn’t my sister, it wasn’t my college roommates. It was, I had to find a whole new set of people. I. So what I did right or wrong was, everyone I saw with a child that had implants, I asked them if they would [00:12:00] like me or would be friends with me on Facebook.

Amanda: And so I created this Facebook, message group, and it was CI ladies just happened to all be moms and everybody was kind of in a different stage in their journey. It was like, this amazing group of ladies that just shared how it was for them. Everybody was in a different stage, so everybody had a slightly different perspective.

Amanda: But when you’re like, I don’t know what toys to buy, and they’re like, buy any toys you want because that’s what we did it and it was fine. Or surgery, right? We’re going into surgery. What? What should I pack? What should I expect? And it was like somebody always was there to kind of fire back a response. So this is how it kind of went for us.

Amanda: I would’ve done this differently or. You know, definitely snap jammies, you know, just little things, little mom things, but, and I found these ladies like in very [00:13:00] random places, I found them at Walk for Hearings. I found them in, honestly, in the waiting room at Children’s Hospital. And I just really decided right then and then there that I was gonna be brave enough to find the people that were gonna help me.

Amanda: And my and my child and our family adjust because I do think that I was further ahead than maybe my husband was, and that was hard. That was a hard aspect. So kind of sometimes felt like I was dragging him along. Mm-hmm. But we had these long drives to Milwaukee. They were two and a half hours both ways.

Amanda: Sometimes he would come with me and we had a lot of time to talk. , I kinda credit those drives to probably the strength of our marriage because we just, we just had to work, like work it out. You know, and we had a lot of time to do it. It was forced, but hey, sometimes, sometimes it has to be that way.

Amanda: I also went [00:14:00] on to find more people. Evie was the first child with hearing loss in our school district in 26 years. Mm-hmm. So I, I wasn’t gonna find people that understood it. Here I was, I found wonderful, wonderful people that were willing to learn with me, and I will always be so grateful, but, those people that were willing to share their journeys and how it worked out for them, and even if it was, this did not work out for us, but I’m brave enough to tell you how it could be different for you.

Amanda: I still, to this day, recently, we had an opportunity to be with a lot of these people that we found and made part of our, you know, part of our fabric, of our family. And I still, they still just fill my cup. So much 12 years later, still finding so much information and resources from people that we may not have [00:15:00] brought into our fold without this sort of special surprise, if you will, of hearing loss.

Amanda: It has given us so much in people and and experiences, so. Hmm. 

Colleen: I love that. Well, Amanda, one of the reasons we were excited to talk to you is that you presented this year at the Early Hearing Detection and Intervention Conference, the EHDI Conference, and your presentation was titled Finding Joy in the Journey.

Colleen: So I’m curious, what has that looked like for you? 

Amanda: So our family kind of has this motto, it started at my wedding, we’re farmers and we grow wheat and kind of have this philosophy on life that there’s always more wheat than weeds. Mm-hmm. So there’s always more bounty to life than there is thorns or troubles or challenges and that hey, even sometimes the weeds can be really beautiful.

Amanda: Right, so we can look for those. Am I okay? When I got [00:16:00] married, I had a thistle and some wheat, and so it was just a reminder of the balance of life. So when we started this kind of crazy journey of having kids, and then it was compounded by Evie having hearing loss, we tried to carry that sort of family philosophy with us.

Amanda: Now, early on, I had someone that was very well respected say to me, well, you’re gonna have to fight. And hey, I’m more than willing to fight for my, for my kids, all of ’em, at any moment. But I sort of made the decision that I was going to try to take a positive spin, not approach everything on the defense.

Amanda: And try to work with all of it on the offense, right? So try to be preemptive. Bring coffee to I E P meetings and popcorn or, tried to provide really good resources, so it wasn’t like I was constantly fighting the [00:17:00] system, but that I was really partnering with whomever we were working with at any given time.

Amanda: Our early detection, our, our birth, the three folks were, again, wonderful, really, really wonderful people, but they didn’t have awareness of our, of our situation at all. Really no experiences, but a perfect example is they wanted to learn and so one time they came with us all the way to Milwaukee and back, right?

Amanda: They spent the whole entire day with our family. That was a way for me to look at it as, okay, this is an opportunity for everybody to learn and grow, and they came along. It was just little things along the way that we just kind of chose to take a slightly different perspective than the, you’re gonna have to fight.

Amanda: It doesn’t mean at any point I gave up anything for my kids, any of ’em, and definitely not Evie. It just means I really chose to take a different perspective. You know, we had some challenges. The [00:18:00] travel between our home and our farm to Milwaukee was a challenge. But we, we met it with, okay, what can we learn about each other and our family on along the way?

Amanda: And people would meet us in Milwaukee and take the other kids. And you know, we just looked at it all as opportunities and hey, there are times when it was hard and I was not looking at it with this sort of, everything is so wonderful, sort of perspective rose colored glasses. But the overarching thing is that, We have learned so much.

Amanda: We have grown so much as a family. Our, our, our horizons have been so broadened by, you know, a challenge. Like how is, that’s so amazing that we, we gained so much. By a little bit of hearing loss if you really think about that and, and the growth that our entire family has done. I’m really thankful that it worked [00:19:00] out that way for us.

Amanda: So we got this amazing opportunity to speak. We submitted an abstract and Evie spoke too at the EHDI Conference that that conference is really neat. I had been before, but probably not with like the same sort of perspective I am in now. So, by some, you know, twist of fate. I am a nurse in a school district now, and so I actually perform like 500 screenings, hearing screenings each year.

Amanda: And so going to that conference and meeting and working with those professionals. It gave me a whole new perspective on that portion of my job, and cuz I always kind of had a very high importance for screenings, even though Evie was detected really early. There are many that aren’t. And because early detection was so important for us, I know that it can be really important for others too.

Amanda: So, sharing kind of our story of our little farm in nowhere [00:20:00] Wisconsin, and how we kind of got to where we, we are, was a huge honor. We had the amazing opportunity to meet Carl Ray White. He came and watched our presentation, which was so neat. Came up afterwards and talked to Evie about horses. Cuz Evie rides horses and so does he.

Amanda: So there was a really common, common bond there. And then we had the opportunity to also meet Rachel Coleman, who had had been in our living room so many times, you know, on DVDs and singing the songs and signing away with her. So that was amazing. Sort of full circle all coming together because Evie has started signing more now than she ever has.

Amanda: She started a sign language club at our school and has really, and I identified with that and starting to learn more and more. So it was really great opportunity all the way around. Couldn’t, couldn’t have. [00:21:00] I probably have never been to a conference and I’ve been to a lot that had more powerful impact on me as a mom.

Amanda: But Evie, as a 12 year old, getting to present and speak about what her journey has kind of been, it was it was amazing. Early, early on at that very, very first cochlear implant meeting we ever went to, I met a little boy named David and he was probably seven or eight at the time and he had, he had a cochlear implant and he spoke so well, and I remember thinking, oh my gosh, this could.

Amanda: This could work out for us like this. It was the, like you had asked about those moments when you realized, oh, I undershot our goals here with the safety as why we were doing this. But he was the, one of the first times I was let, really had the opportunity to think like, this is, this is gonna be a [00:22:00] completely full life for her.

Amanda: And it definitely has. So. 

Julie: That’s so great. I mean, I was going to ask if presenting at EHDI felt like a full circle moment, and those were the exact words you used that it felt like coming full circle. And I wanted to ask how you were told that it was gonna be a fight. What would you tell a new parent coming into this journey?

Amanda: That every experience is so unique. They’re not all gonna be like mine. They’re not all gonna be like someone else’s who did maybe not go as well. Kind of like run your race, like figure out what’s right for your family and then work diligently, right? Find your people. They’re probably not the people you already have.

Amanda: So go out and find them and then use ’em as [00:23:00] resources and then plan. Cautiously. Optimistically for what you would like it to look like. And I am a huge proponent of writing things down because it is going to get long in parts. Parts are gonna seem really long. You’re gonna maybe question yourself and if you could look back and see the progress you made or the progress you are.

Amanda: You’ve made with hearing loss or the priors, your child is made with hearing loss. It will give you motivation to keep going, but it, it is unlike anything else in, in motherhood or parenthood and it is already hard. So I am not, I am not saying it’s been easy. We just always stayed the course. We knew where our goals were.

Amanda: We kept moving ’em, but we knew the direction. Our goals always were. And that kept us always grounded [00:24:00] and moving toward him.

Colleen: You know, I just thinking back to some of the things that you have just shared about your perspective early on, that instead of feeling like this was a, a battle that you were entering, but you were trying to, it was almost like you were trying to like attract more flies with honey than vinegar.

Colleen: Whatever that saying is. Mm-hmm. And I just think it’s really, it’s really amazing to me your whole perspective on it because one, that attitude I think is more effective, especially in these kind of interactions with people that you have to work with over the long term. Like you’re gonna have to work with this team of teachers and Ed, you know, educators and therapists and all of that over the long haul.

Colleen: But then also, I think because you had that mentality, then that opened the door for them to be willing to like, spend a day coming to Milwaukee with you so they could better understand. You know, I think it would have been really easy to be in your shoes and know that you were a little bit under-resourced, living where you [00:25:00] lived.

Colleen: Know that they hadn’t had a kid with hearing loss in two decades or more. And so it would be easy to just be like, this is terrible, and I have to like just like battle it out for everything. But I think that shift then invited that team into growing their own awareness and their own understanding.

Colleen: And I don’t think they would’ve done that if it wasn’t for a family that they felt, you know, deeply connected to and in community with. So I just, I love how those things went hand in hand and I think that all started with your, your own mentality shift. So I just really. I just really love that. 

Amanda: Yeah. So Julie asked, you know, I’m gonna ask kind of a personal question and I kind of chuckled a little bit to myself because one of the things that we decided really early on was that we were willing to share mm-hmm.

Amanda: That so many people had offered and been willing to share and open up about their journeys that we were going to be brutally honest about [00:26:00] ours. And, and so thankfully we’ve been able to share and it’s all really pretty, pretty hindsight’s looking pretty good, right? She’s a 12 year old seventh grader that plays every sort of manageable, so basketball, volleyball.

Amanda: She started track and softball. She rides horses. She shows dairy, cattle, and pigs. She was a reading millionaire in the third grade. She, you know, she just has met every, every obstacle and saw it as an opportunity and were, you know, all of our philosophy in the world would not have mattered if we didn’t.

Amanda: Sort of get this gem of a girl, a little girl that was willing to teach all of us all along the way. So, I love that. 

Colleen: I love that. So Amanda, as we wrap up here with Evie headed into, she’s in middle school now, she’s headed into high [00:27:00] school. And I’m just curious, are there, what are the challenges that lie ahead for you that you’re finding yourself?

Colleen: Like continuing to sort of see who your people are and who you can? You know, help as you navigate this, what are the things that you feel like are different than you expected to be at this stage? You know, you’re heading into a, a whole new territory, and I’m curious what that feels like for you. 

Amanda: Yeah.

Amanda: Middle school for any kid is tricky ground, right? There’s whole book series about that and we’ve definitely felt some of that and maybe even I wasn’t all the way expected for it to be maybe, maybe just a bit harder. Mm-hmm. You know, kids are just so desperate to fit in. Sometime, and I get that, Hey, I felt that way.

Amanda: And so there’s just been times where something may have bothered her more than I would’ve ever expected. Just a recent example is the, the seventh grade went on a ski trip. And we didn’t have a ton of [00:28:00] information. And so I was, Evie, if you go on a ski trip, you gotta wear a helmet. Well, that was gonna be so bad, right?

Amanda: Okay. But let’s just get more information. So you realize that you need to find these people that are willing to give you more information. So luckily, a, a great person at the school in the PE department, the park department, that was willing to just lay it out there for me. He actually has hearing loss too, and wears hearing aids.

Amanda: So he is again, just part of our, part of our, fabric. But, turns out all the kids had to wear helmets, right? So we were so worried about this. And then it didn’t matter at all. So I think what we’re finding now more than anything is that sometimes we worry that it’s going to be harder and then maybe it’s not at all, or maybe it is and we got a little more workaround.

Amanda: Right. Softball helmets just seem to be a thing, right? It’s just a little bit [00:29:00] harder. So getting all the information is still really important for Evie. And me. I always have been that way, but I find now having all the information, Evie really does well better with that. That sort of any, any information she thinks is pertinent helps her feel more comfortable in all situations.

Amanda: So sort of some of the things we’re like looking forward to is high school. We’re trying to see if possibly she could take ASL as a language in high school, but not only for her, which is sort of commonplace. She would really like to have her peers have that option too. So we’re kind of trying to work on that.

Amanda: We’re in the beginning stages of that. And then, you know, she’s already talking about what she wants to be and what colleges she’s interested in. And so I know there’ll real challenges there. Right. I know they’re coming, but it’s, [00:30:00] it’s just all still really exciting. Too, kind of seems like sometimes you get in a really good groove and you know you have batteries in every purse and you know that’s how your life works and you don’t even think twice about it.

Amanda: And then something will kind of set you back a bit. Something will come up that you could not have seen coming in a million years, and you get a little shaken again, and you get reminded of how it was in the beginning where you didn’t feel like you had firm five footing. And then you figure it out cuz everything’s figureoutable and you get more information and you ask the good questions and then you move on and you get going for a little while.

Amanda: But I think it’s okay to have awareness that something’s going to knock you off balance every once in a while, but that it really can be figured out. And I have to remind myself of that. But really [00:31:00] trying to work on Evie really internalizing that and learning that we can figure this out. What questions do we need to ask?

Amanda: What, what opportunities do we need to explore? So, you know, there’ll always be a little bit of extra things. They just will. That’s just our reality and. I guess I’m okay with it cuz usually we learn and grow, but again, we just meet every challenge as an opportunity. Just try to see what we can learn from this one.

Colleen: Well, Amanda, you have such a good attitude that I feel like so many of our parents and even the teachers can really learn from. Thank you so much for, for being here today for sharing your story. I can attest to how great all of your kids are, but you’ve done a really good job with all of them and just equipping Evie for, for the future.

Julie: Yeah. Amanda, thank you so much [00:32:00] for just sharing your story with us. I really appreciate 

Julie: your, your openness, your honesty, your resilience, and your positive like just growth mindset. I think is so empowering for other parents to hear, even teachers and staff members working with children with hearing loss.

Julie: It’s just, I think, empowering to be able to find the joy. Absolutely the joy in, in every situation. And these, when you come across an obstacle, Facing it with a growth mindset and a little bit of positivity, I think, as you mentioned, can go a long way. Absolutely. And thank you so much for sharing that.

Amanda: Yeah. And good luck with your little one, Julie. Oh, thank you. It’s hard, but it’s worth it. 

Colleen: Totally. I would not go back to those days if you paid $2 million.

Amanda: I dunno. Millions. These are cute though. [00:33:00] They’re so cute. They’re but so much. 

Julie: Thank you for joining us on another episode of All Ears at Child’s Voice.

Julie: Be sure to join us for our next episode. We release episodes once monthly. 

Colleen: You can follow us in this podcast on Instagram with the handle at Childs Voice podcast. We love to hear from you. So please send us an email@podcastchildsvoice.org and you can find episodes, show notes, and archived episodes at our child’s voice website, child’s voice.org.

Julie: And if you’re interested in learning more about child’s voice, we’re on Facebook as well as Twitter with the handle at child’s underscore voice, no apostrophe, 

Colleen: and that’s all. Be sure to subscribe to the show wherever you listen so you don’t miss any episodes. If you’re interested in supporting child’s voice and the programs like this one, please visit us@childsvoice.org and click on the donate now button.

Colleen: Thanks for listening. Bye. [00:34:00] 

Amanda: Bye.