Top Tips for Parents of Children with Hearing Challenges Return to School

During the uncharted, unsure return to school opening, I was grateful to sit down with Camille Warren.  Camille is a positive, proactive parent who has 4 children total; 3 who have hearing loss.  Her children with hearing loss are 17, 13, and 10 years of age. Join us today as Camille shares what was learned during the adventures of remote learning and great tips for the upcoming year. Camille also shares a few anticipated communication challenges as schools reopen in a new way this school year. Be sure to listen to the end as Camille has 3 MUST DO tips for parents and their children with hearing challenges (and professionals too).  

Resources Mentioned in this Podcast:

http://www.ohiohandsandvoices.org/

https://www.handsandvoices.org/index.htm

https://deafandblindoutreach.org/communication-planning-guide-hh

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 four of empowEAR Audiology with Dr. Carrie Spangler. 
[00:00:07]So welcome to the empowEAR Audiology podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world. I wanted to have an empowering podcast for all of my listeners, whether you're a professional, a parent or an individual with hearing loss, or just want to be inspired. I am glad that you are here with us today. Don't forget to subscribe. So you don't miss an episode. 
So today I'm really excited to have one of Ohio's star parents on the podcast today. Camille Warren is here today and she is going to share a little bit about her own family journey, parenting children with hearing loss, as well as we plan to have a little conversation about the uncertainties of returning to school, whether that's in person, hybrid, remote. 
A whole mix of everything and what that means. Being a parent of children that do have hearing loss. So Camille, welcome to the podcast and thank you for being here today. 
Thanks for having me Carrie. So before we get started, I thought I was just kind of thinking how we have known each other for a long time. 
[00:01:34] Yeah, we have. And I'm trying to think of when we actually met. Well, as I, as I recall, that was, when you were serving as co chair of the new universal newborn hearing screenings subcommittee here in Ohio. And, somebody had suggested that I joined that subcommittee, as a parent, because there's a parent role in that subcommittee as well. 
[00:01:59] So I remember having conversations with you on the phone before my first meeting. And I think that's when we first talked. All right. So that was probably at least maybe 15 years ago. I don't think it was quite that long ago because yeah, because you're going to talk about right. I think that all three of my children with hearing loss had been born at that point. 
[00:02:23] And my youngest with hearing loss is now 10. So I would guess maybe. Nine years ago. Okay. Yeah. That makes sense. Time flies. And I just appreciate your positive and proactive voice in the state of Ohio because you've done so much for the newborn screening committee and also for advocating for newborn hearing screening for kids in Ohio. 
[00:02:49] Hopefully we'll be able to have some more movement with that in the future here. Once COVID settles down here. Right. 
[00:03:00] Camille, can you just share a little bit about yourself and your own family and your kids and kind of how you got to this leadership role of advocating for kids? Sure. I, yeah, I think that I sort of fell into it after I had my own kids who have hearing loss. 
[00:03:19]I have four children. the oldest three of whom are identified with moderate or moderately severe, depending on the kid, hearing loss. My oldest is Ellie and she is 17. And then I have Theresa and she is 13 and Toby is 10. And then I have a toddler, Bernadette. She is two.
So my oldest was identified when she passed her newborn screen and she was identified at three and a half with a moderate hearing loss. They identified it through just sort of a general preschool, screening that her private preschool brought somebody in to do hearing, hearing and speech screenings on the kids. And, so they happened to identify her through that. 
After she was identified, my next daughter was young. She was like six months old when my oldest was identified. And so she started going in every six months for, for hearing tests because of family history at that point. and she had also passed her newborn screen. She had some middle ear effusion as a little one. 
[00:04:31] And so she had, we didn't have a great test until she was about 13 months old after having PE tubes placed. So they put in tubes and then at 14 months, she tested with fine hearing. Her hearing was fine at 14 months old. And then we went six months later for a followup and she tested with a hearing loss at 20 months. 
So, somewhere between 14 and 20 months, she, she lost her hearing. And then my next child was born and he also passed his newborns, but he was a C-section and we were in the hospital for four days. And so they tested him four times. I didn't know, at the time, even, even a, you know, a seasoned parent who had been around this a few times. 
I didn't know that they weren't supposed to test four times. So, it took four. Attempts for him to pass his hearing screen. So we still, because of our strong family history, at that point, we went for, or a for an ABR one month, the full diagnostic testing at one month. and he did have a mild hearing loss at that point. 
So even though he passed his newborn screen, he probably shouldn't have, should have referred after the second testing really. And then he had a further progression of hearing loss at about age three. We went for audiology at about age three and he had progressed to the moderately severe range. 
So, those are my, those are my three kids with hearing loss. I also have the toddler, so because my kids have all been identified or have had progression within toddler range, we're keeping a close eye on. But so far, she seems to be progressing. Normally she passed her newborn screen. We did take her for a full diagnostic screen, full diagnostic tests anyway, because of my family history. 
And she also asked that and she's had a few, follow up audiograms as well that have also gone well, so, so far so good for her. Good. So you obviously have a lot of experience with having three out of your four kids, having some degree of hearing loss and neither one of your husband nor yourself had hearing loss. 
Correct. I actually have, a moderate hearing loss on one side and it occurred to me suddenly at age 30. My daughter had, had what is, I mean, it was never identified, but what was the suspected to be RSV? And, I also had a cold at the same time and I was so concerned about her, that I wasn't really worried about the fact that I suddenly couldn't hear.
[00:07:00] So I didn't follow up right away. as a, as an aside, if an adult ever has a sudden onset hearing loss, you should go to your ENT right away. but it's, it's a, it's a moderate loss. It's about approximately the same as. It looks very similar to my oldest daughter's, sort of cookie bite presentation. 
[00:07:20] So it's unknown as to whether mine is, is related to theirs. It looks so similar. Or if it's due to a, due to a viral, Yeah, but it's only one sided. Okay. Wow. So I'm sure though, with all of this going on on right now and the world, there's been a lot that has impacted, I think the world of, individuals who have hearings challenges, but it's a unilateral loss, maybe yourself as well as your, as well as your kids, but, I had the opportunity a couple of weeks ago to talk to an administrator at the national level Cheryl DeConde-Johnson. 
[00:08:01] And we had a lot of conversation about reopening of schools and then Tina Childress's and I had some conversations about, just adults in the world, who happened to be educational audiologist, and I feel anxiety about going back to school. So I'm. Curious to find out from you from a parent perspective. 
[00:08:24]and I'm sure your, your kids are talking to you about return to school. but before we talk about return, return to school, we all sat down and mowed. In Ohio. And so went to a quick online virtual platform. And I know all of our teachers are amazing in the fact that they could pivot so quick and try to make things happen when you're not used to teaching that way. 
[00:08:52]but it does pose a lot of. I think challenges, when we are talking about learning and accommodations. So was there anything that you learned or that kind of stuck out to you homeschooling your kid through this pandemic part of March through now? Right. So. It's back in March. I think the things that worked well for my, for my kids, a big plus was, getting the broad band system from the school. 
[00:09:27] And in order to use that, with online with zoom calls and things like that, that that really helped a lot as far as, Yeah, sort of cutting down on, on distractions and background noise and that sort of thing. I'm trying to think of each, each kid, you know, as, as the alternative to that, like distractions were really hard. 
[00:09:49] My role, especially really struggles with. You know, a zoom call that at the time had over 20 kids called into it and the teacher and she, if she was free kids engaged and would try and replicate things that they had been doing in the classroom, which was a great concept, but it was very hard for him to follow. 
[00:10:15] So she would do things like in the morning, she was. Question and then go around the room and ask all of the kids to answer the icebreaker, which sometimes was okay. And sometimes it was the kids build off of something that the previous student had said, and the conversation was really hard for him. 
[00:10:40] Grasp everything that had been said, hold onto all of that, that, that language information, and then build upon it in the moment that, that he was given. So that kind of thing was really difficult. even though he had been doing similar kind of icebreaker, get to know you get comfortable kind of. activities in the classroom all year long.
[00:11:04] So like in the classroom, he was comfortable with it. He could participate and it was fine, but when you put it online, it was just this whole other level. That was, that was hard for him. So that, that's the kind of thing that I would say was hard. when as time went on, the teachers got better and better at. 
[00:11:25] Muting and unmuting students as, as they, she needed to do order were to keep this whole room, this whole group of 20 plus ten-year-olds from, you know, making, making noises in the background. And so that got better and better. I think the combination of getting people as needed, to a certain extent, breaking down into smaller groups and also the use of the Roger system. 
[00:11:51] All of those things together, definitely helped him feel like he was in a place where he could participate better. Did the teachers do anything like in the zoom meetings as they went forward? I know you said they broke them into smaller groups and they were able to use the Roger system, but did they have any other, like maybe rules for those zoom or Google classroom that helped, you know, kids. 
[00:12:20] I think ways was, was there were supposed to as much as possible we'll have video on and have mics off. So you had to say something you were supposed to have your microphone off that would make it a little bit easier for her to manage the room that she wasn't constantly meeting people. I think that that, that definitely helped. 
[00:12:41]one other thing is an example, you know, talking about. Elementary school is very different than talking about high school. And I do think that there are challenges and on school that are, they're just different. she was planning on, you know, it's that time in the year that she had a certain book planned for a read aloud. 
[00:13:00] And so she did her read aloud over zoom, which is fine, but no was normally Toby would have been okay in the classroom without having a book to read himself. When you put it online, it was just one more step, more difficult. So we bought him a copy of the book and he was able to read as the teacher was reading, that kind of thing, it just became very obvious when and where, where he needed visual supports. 
[00:13:30] For the most part, it was things that were auditory only that he suddenly, you know, he over. Classroom. He might've been fine, but via zoom he needed, he needed some visual support as well. These are all good. I was writing down some of these notes because I think, whether a lot of schools, what was I going back either a hybrid model or, a virtual platform and we can take right. 
[00:14:00] This turnaround was really quickly even though in the spring and use it, as an advantage. Right, right. Yeah. The other thing that I will add that we are doing this here going forward. Again, specifically for Toby. And I think a lot of this is just because coming from the spring, he was the one that struggled with it. 
[00:14:22] The most, it was, it was different in high school. They were already used to doing a lot of things, self paced, and interacting with all of the apps that they needed to interact with that sort of thing. So like for my older kids, it was not as big of a deal, but for Toby, We are going to be, crafting for him a communication plan, which I don't know if you're familiar with in Ohio, that we have this, there's a document that was put out by, the, by OCALI they are the house, the document, they own the document. 
[00:14:55]and it takes you step by step through. A lot of different, parts of, of the day and all the different ways that you need to be able to communicate. And it writes down a plan so that you have, so that you've, you've hopefully thought through everything. So how is your student going to. Get the, the announcements from the PA, how is your student going to receive information? 
[00:15:20] If there's an emergency, how is your student going to, get, make sure that they have all the information they need for homework sort of thing. It really switched to step-by-step all the different ways that, that communication happens in the school. and it, and you draft a plan. so we're actually going to be working on that for two, for Toby, in order to hopefully help him have a little bit more of a smooth time. 
[00:15:45] As far as this, this communication needs go need to be going forward. Yeah, no, I think that's a, an excellent idea for parents to be aware of, especially because the accommodation that are in place for them currently might not be the accommodation that they need with the extra safety and health Precautions such as mask and distancing. 
[00:16:12]and, but for learning that are taking place right now, that really complicate, like you said, learning and especially, with interaction and, and the early grades as well. So yeah. So Camille, you talked a lot about remote learning, right? I think we have some really good tips about. What we could do if we end up pivoting back to that or with a hybrid model. 
[00:16:38] And then I love that point about having a communication plan that, OCALI has. and I I'll definitely link that after episode today. So people want to take a look at that. They can, revisit that information as well. that what I wanted to talk about next is just over the summer. Now that everybody's kind of been home and you've been able to, go back out a little bit safely. 
[00:17:05] Is there communication challenges in your everyday life with your kids that you've noticed? the first time. So we, we have been very cautious as a family as far as going out goes, we, we really took the stay at home order to heart and my kids have not. You know, even, even to this day have, have had sort of limited exposure. 
[00:17:28] I'm outside with the exception of going to parks and walks and, and things like that. but I do have a, have a memory that, and say it was in June, Ellie, my 17 year old and I both. Made an appointment to give blood. And when we got there, it was one of her first times really interacting with a lot of people in masks. 
[00:17:54]and she hadn't, she, she struggled with, with listening to the people at the check-in and understanding people as they were asking her, You know, health, real health questionnaires that are required before, before giving blood and things like that. and so that was sort of like I put in my head that this was going to be a problem, but that was the first time that I really.
[00:18:19] Observed it. and she knew also similarly than it was, she knew theoretically this was going to be an issue, but then to actually experience it, it's kind of a different thing. So yeah, no, and I kind of felt the same way Ellie. Did I remember. I knew it was going to be a problem, but until you put yourself in that situation and experience it for the first time, you're like, Oh wow, this, this is really hard. 
[00:18:47]and so I think I had gone to the grocery store and. It was just, it was a closed set of question, not even, I mean, that's a, that's a pretty open set of questions. As far as giving blood. This was like, are you paying by credit card? Or if you want paper or plastic. And, it was still, you know, that short amount of time, it took a lot more energy to. 
[00:19:11] Focus and pay attention and be an advocate and ask for repetition and that kind of a situation, which kind of brings me to the next topic that I wanted to ask you about is. First of all, do you know how your schools are opening and what you're considering? And, the second part of that would be, what do you think some of the challenges about reopening might be and what parents should be aware? 
[00:19:41] Sure. School district has actually not yet announced how they are going to open the first week. they are tying their plans very closely on a week by week basis to how our County is doing on our statewide. Map. So they, they code are each County by, by color so that if you're doing great, then you're a yellow. 
[00:20:08]and if you're not doing so great, then it goes to orange and then red and then purple. And so our school district has decided to tie themselves to that rating system, which is announced every week on a Thursday. And so based on each Thursday's rating, We'll determine how our school operates in the following week. 
[00:20:32]and this is their plan for the entire school year. So really know, much more than, you know, it, whoever knows, you know what I mean? It's kind of like, well, I think most it's all a. It's all Mirage anyways. Right? So whatever anybody ever, he knows what's going on, but we really don't know what's going to be happening so Thursday at any given week. 
[00:20:57] And so. It appears as though we are highly likely to start in an e-learning, manner. And then if things get better, we may be moving to hybrid. but things would have to be going really, really well for us to ever be all in. and that's kind of, kind of how they're. They're looking at doing it. So I just to be prepared to be e-learning, because they, they both want the two who are going to be returning to the, to the public school, both want to be in school. 
[00:21:32] So, I'm just hoping that at some point we will get to a point where we can go hybrid, So, yeah, the, the, my 10 year old and my 13 year old, will both be returning to either e-learning or hybrid. However, we start, and continue the school year at our, at our public school. my, the reason and the reason for that is that my, my 13 year old. 
[00:22:01]  She really wanted to return for band. she plays clarinet and she was very excited at the end of last year that she was placed into the highest band that she could be placed into. and she had worked very hard for that. And so because of her strong desire to return for band and also the eLearning platform like that online Academy, they call it if we had chosen only online, That would not have offered a foreign language, for middle schoolers. 
[00:22:30] Cause they consider that to me in an advanced class. So, so because of those two reasons she wanted to return to school. And then my, my son who's going into fifth grade is also identified as gifted and our school district is not doing any gifted intervention services via, the online only platform. 
[00:22:51] So in order to have him. Received gifted intervention. We, we opted for the in person. If it happens, I don't even know what to call it. Well, like you said, every Thursday, we will know. What really is a week by week plan is what it is, 
[00:23:16]your work area, the Columbus area, and getting to a level that they are able to go back hybrid or even, five days a week. do you have any. Thoughts about that? I mean, I know you talked about the communication plan and going through that a little more deeply in order to ensure that your kids. Accommodations and needs will be met, but is there anything that really off the top of the hat that you can think about as far as reopening and actually physically being back in school that creates either at a, I don't want to call it anxiety or I don't know, uncertainty as the parent. 
[00:24:04] So I think that the thing that everybody worries about, is always masks. and yeah, I've, I've done a lot of reading up on that's cause and, and research into types of masks and visual access masks and cloth masks and, and all of the different options. and I think what it really comes down to is that, It's going to have to be some, some level of trial on error. 
[00:24:31]I, I don't think that there is a single, a single solution as far as masks go that will help every student with a hearing loss. some students may prefer to have their teachers and peers and anybody that they communicate with. In a simple cloth mask or a disposable surgical mask, that does not attenuate the sound very much because there are, auditory learner and other students may really need to have that visual access that's given with a, a window mask or, Some kind of a face shield type mask. 
[00:25:18]but there's a lot of sound attenuation with those options. So it's really, unfortunately it seems to be at the moment, a big trade off, where there doesn't seem to be a whole lot of access both ways. so I. I'm hesitant to make a statement about what my kids will end up using, because I, I don't know. 
[00:25:40]we haven't tried enough different options. Enough different kinds of listening to figure that out. But I do suspect that the, the Roger system, the DM system will be more important than ever, because of the sound. Quality issues of masks. I agree a hundred percent. And even I could, you know, the peers who may have normal, no near no, my hearing, as well as the teachers are going to all. 
[00:26:19] Realize, I think the impact that hearing has an impact in the classroom, when you have muffled speech and, and, you know, communication is a two way street. So I think, yeah. Having an improved signal to noise ratio for all of our kids, whether you have hearing loss or not is going to be important at this point in time with everything going on.
[00:26:47] And then I, I hear about different schools who want to. Have less kids in a classroom. So they're using other spaces such as an art room or part of a gym to have a classroom, which again, changes the acoustics of the classroom, which makes it more difficult to hear when the sound bouncing around. So there's all these other like layers that kind of. 
[00:27:20] Come apart when you think about everything that goes into reopening schools, and even things like taking carpets and things out of room, which absorbs sound, but we want it to be clean. So there's like, like you said, there's not, it's going to be a trial and error with different types of accommodations and support. 
[00:27:44] So as we, we open schools again, Right. So, yeah, go ahead. I was just going to say no, I completely agree. And when you also think about, and again, I don't, I don't have a whole lot of in depth knowledge about what my district is doing, but I have seen plans from some districts that include things like, little. 
[00:28:08] Plexi glass dividers between desks and around desks. And just thinking about the number of hard surfaces there, and, and the reverberation in those rooms, it's, it's going to be challenging and perhaps the answer for all students, what will also help the students with, with hearing loss and that's more visual supports, and making sure. 
[00:28:32] The things that I asked for, for my kids, like announcements being written down, homework, being written down, things, not given only orally, but also visually may end up being more the norm for more students. and that, you know, that's not a bad thing. No, I agree. A hundred percent that we're going to see a lot more visual supports coming, just because of the nature of how the classrooms are going to have to be set up. 
[00:29:02] And then I've heard about classrooms having to go outside because it's better to be outside than inside. So I think that creates a whole another. A challenge if you're a spaced out and wind noise, and if you happen to be near a road and all of those other factors that go into being upside too. So they're going to be a lot to think about as we open and kind of be overwhelming, I think. 
[00:29:29] But, as a parent, is there anything that, because it's so overwhelming that you thought about that kind of calms you or different tips that. Might help other parents as they're going through this unknown unchartered territory. Yes, I do have a couple of tips that I can share. I'm glad I did is with things that we're talking about in my family and what we're trying to do. 
[00:29:56]the first one is practice, practice with your, your kids, making sure that they can put their masks on and off by themselves. Ideally. When you're wearing hearing aids or cochlear implants or, or glasses or all of those things putting on and off a mask is actually not that easy, you know? and so we've gone through. 
[00:30:22] Lots of different styles of masks and different, means of assessment. And, especially with my 10 year old, you know, he just, he, he wants to just throw it on and go, and we've had to make him slow down and find out, you know, which side is up, everything
is oriented correctly. He just throws that, that mask on, Because it just doesn't work if it's not on correctly. 
[00:30:49]so, you know, I would just say that's just sort of a simple thing, but practice putting on masks, taking them off to him off without getting them caught in hearing aids. last thing you want to do is go crawling around on hands and knees, looking for it, for hearing any of that just went flying across the room when you know, your child tore off their mask. 
[00:31:07]So that that's my first. That is a big bonus tip. Let me tell you, and then by express, but in a different way, it's also practice listening, practice, listening to people who are wearing masks, and. Practice your, your self advocacy skills, in different situations and with different people. So the way that that your child might need to self-advocate with the teacher would be different than having to self-advocate with a peer, or somebody in the office, or, you know, somebody in the cafeteria, if they're. 
[00:31:47] If, you know, in different, different situations, they need to be able to read that situation. And self-advocate appropriately, with adults and with other peers. And [00:32:00] that's really hard when you know, so much of your body language is expressed in your, in your facial expression. And that's also covered up. 
[00:32:09] So, you know, practice, reading, reading, people, practice, communicating. Practice self-advocacy. Those are all great tips as far as that can be used. I think again, online and in person and the mask, not as much in my online, which would be the bonus of being virtual compared to being in person. but even just, you know, that practice of listening. 
[00:32:40] Online and in person, is going to be important too. And I love the self advocacy skills. and you bring up a really good point about. Practicing their self advocacy skills with different people. because like you said, you're with your friends is a lot different than what you're learning in class. 
[00:33:01] And, who you're talking to in the office, is really important to advocate at, at those different ways as well. So, Kind of, as we wrap up, I wanted you to just share, I know you, heavily involved, I'm actively involved in Ohio hands and voices. Can you just share a little bit about your role with hands and voices? 
[00:33:25] And, these would be like, The tips that you shared today would be like awesome tips just to, I had him put on the website right now because I'm sure there's people open back up exactly what parents need to hear, that use some of that stress that they're probably experiencing right now. Sure. yeah, I am 12 with Ohio hands and voices. 
[00:33:49]Oh, her hands and voices is a parent led parent professional advocacy or parent professional, collaborative organization, [00:34:00] families who have children with hearing loss regardless of their mode of communication. So we support families who, Use a spoken language, families who use sign language, families who use, any combination of both and or cueuing.
[00:34:18]and we support them across all, times in their lives from the moment of identification all the way through transition, after high school. So we, we do that through kind of parent to parent mentoring and parent to parent support. We also do it through a, a program with advocacy in the schools that is called Astra, and that stands for advocacy support and training. 
[00:34:50] So we do trainings for parents and professionals, both. But specifically, our audience is generally geared towards parents who have children with hearing loss to help them through that IEP process, from, from, starting in preschool all the way through post secondary transition. So, so my role with Ohio Hands and Voices is that, I've been involved with them. 
[00:35:16] For eight or nine years. And I sit on the board of directors. I am past president, but I do not currently, hold a, position on steering. I am just a board member. and I. Volunteer also as an Astra advocate. So I also help families, who need a little bit of additional information or support or advocacy, through the IEP process. 
[00:35:45] So those are my hats that I wear with Ohio hands and voices. Thank you for all you do for parents. and for their kids, because I know parents. They need to have other parents that to talk to and relate to and know that there's somebody else in their shoes out there as they navigate the process. And like you said, from identification all the way through, I'm sure now with Ellie thinking about moving and transitioning to her next phase of life. 
[00:36:23] Hopefully with college and everything in the, in the future. that brings about another time where parents really want to have that support as well. So, thank you for all of that you do in Ohio. you have just been such an amazing, Positive proactive person. And I'm just glad that I had that, cross through newborn hearing screening and through other ways as well, with other adventures with Ellie, it's been really fun to get to know you and your family too. 
[00:37:01] So, I just want to say, thanks again for being on this. Episode. and now our listeners have gained a lot of insight and important takeaways as they navigate through these uncharted waters of going back to score, whether it's remote or a hybrid or in person. I will check out the episode summary, a link to Ohio hands and voices, and there I have some great family resources on that website. 
[00:37:30]that will help you as you start thinking about reopening or, continuing through this school year again. Thank you Camille for being here tonight and thank you listeners for joining me. Thanks, Carrie. I appreciate it. It's fun. This has been a production of the three C digital media network.