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28: Self-Advocacy for CI Users with Jess Hissam
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Jess Hissam is a bilateral CI user and advocate who shares about her own experiences, self-advocacy goals, listening fatigue, building self-esteem and so much more in this episode!
RESOURCES MENTIONED:
Transcript
Center for Advancement of NEXTGEN Deaf Instagram
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Transcript
Introduction to Podcast and Guest
00:00:05
Speaker
Hello, and welcome to the Todd Pod, a podcast to support itinerant teachers of the Deaf and hard of hearing, SLPs, and other deaf education professionals. I'm Deanna Barlow from Listening Fund, and today we're talking with Jess Hissom about her experiences growing up as a cochlear implant user and how we as TODs can support our students better.
Advocacy Role and Social Media Presence
00:00:24
Speaker
Thanks so much for being here, Jess.
00:00:25
Speaker
Thank you for having me here. I'm really excited to be here today. Me too. Could you tell everyone a little about yourself and your background? Absolutely. Hi, my name is Jess Hisson, and I am the executive director of a nonprofit known as Center for Advancement of Next Gen Deaf. And one of the things that we do within our nonprofit is we are advanced advocates. I am a non-attorney special education advocate, specifically for children who are deaf and hard of hearing that use listening and spoken language.
00:00:54
Speaker
with hearing technologies. That is more my expertise. I do also work with families who are bi-modal and I help give them support recommendations. But as I like to say, I focus on my expertise being with my background and everything. And for fun, I'm a social media content creator on Instagram. Yeah, I love following you on Instagram. Thank you. I appreciate it. That's great. I feel like you'll have so much good information to share with us then, like from your own experience and then also with your work as an advocate.
00:01:23
Speaker
you just have a lot of good information about how things work. So let's go back to your school years.
Educational Services and IEP Importance
00:01:29
Speaker
What kind of school did you go to? What kind of services did you receive? And it's interesting question I get a lot because to preface a little bit, if you follow me on Instagram, which is just.h squared, you'll hear a little bit about my deaf journey with special education and earlier pension system, just how my state denied me of services. And because I state denied me of services, it did
00:01:52
Speaker
complicate things a little bit. So the short version is because we were having a hard time finding the right services and supports for me as a child, when I was born deaf, got cochlear implanted, we were still driving to Birmingham pretty much weekly, even up to maybe three times a week at the time. So that's a four hour round trip. Wow. With that, my parents started to realize that the public education may not really be able to work with that me because they did not have the supports at the time.
00:02:23
Speaker
that we see more of today with the quality speech pathologist who understood auditory verbal therapy, which I like to say gave the birth to listening and spoken language because that's what we use at the time.
00:02:35
Speaker
I had speech apraxia. So I really, truly had to be the clinical speech pathologist that was an auditory verbal therapist. And that made a huge difference in my journey plus other pieces. But because there was a lack of resources up in North Alabama where I'm from, I actually was placed in the private school. One of the reasons I really like to talk about this as an advocate that is really interesting because we know today and with law that private schools are not required.
00:03:04
Speaker
to provide support to people with disabilities. However, the private school that I was at was actually a really great school and was willing to do what it took for me. So what was interesting about that situation is I actually had a written contract with the private school for what accommodations I needed in the classroom that was similar to IEP and 504 plan.
00:03:24
Speaker
And I had an IEP for the speech therapist that we eventually found who was getting her auditory verbal training, all that as well. So I had weekly sessions with that speech pathologist growing up who worked with the auditory verbal therapists in central Alabama to help give me the support that I needed.
00:03:45
Speaker
And with that, I did have an IEP because my mom was a stellar advocate. And when I basically graduated from auditory verbal therapy, that's when I just sent stuff to the private school. So that is a little bit of my background with what type of plan and how that worked. So one of the things I always like to make sure that parents know in the school system, if you are in a private school,
00:04:07
Speaker
you should always advocate that your child has a written contract because it is legally binding more. And that's what we typically see when we look at advocacy cases. But disclosure, I'm a non-territory special education advocate, not legal advice, but legal information. So very good. Yeah, that
00:04:23
Speaker
That's interesting because even in the area where I work, there are children who go to private schools and receive services. Granted, they're not necessarily under the same legal mandates to give those services as the public school, but there are schools who will offer those services in certain circumstances. So I think that's helpful for people.
00:04:39
Speaker
to remember if you're helping a family advocate or looking at different options, especially in some areas, like some more rural areas that maybe resources, maybe you have to be a little more creative with resources. Exactly. So that's definitely something I feel bad for a lot of the itinerant TODs who work in rural areas because they're driving all over the place to get to these kids. Like they are trying so hard. I feel very lucky to live in a dense state. So there's a lot of kids in a short area.
00:05:09
Speaker
But those rural TODs are like doing the work for sure. For sure.
Self-Advocacy and Mentorship
00:05:14
Speaker
So when you were in school in your private school, in what ways did you advocate for yourself? And I know you mentioned your mom was a really good advocate. So in what ways did the adult advocate for you? This is one of the things that I like to talk about all the time because we understand with IDA,
00:05:29
Speaker
When you look at IEP, we look at self-advocacy goals. And this is something that I'd really like to highlight because one, it highlights the importance of deaf mentors and deaf advocates in the school districts of the child's language and communication mentality. And two, we want to talk about are we giving the child appropriate resources so they can become self-advocates themselves? And it takes adults and it takes coaching. It takes just self-awareness and a lot of things. So the third thing is to show, but go ahead.
00:05:58
Speaker
You're talking to the right person, you know, I love talking about self advocacy. So any tips about that from your perspective would be great. Yeah. But to answer your question, my mom was a great advocate because she had great speech pathologists. So one of the things I do like to clarify, I did not have any teachers for the deaf because for me in our area, our teachers in depth are trained and serve as children who are signing deaf, which is great. But we don't have any teachers for the deaf really around here who are
00:06:28
Speaker
both I understand and sign fluently ASL as a language and understand the nuances of listening and spoken language. So that's part of the barriers that we have here. So for my mom, she was coached by speech pathologists and
Mother's Advocacy and Transition
00:06:44
Speaker
her, my audiologist, who is a family friend for us.
00:06:47
Speaker
with how to advocate for your child. And through that journey of hers, she was able to learn how to build advocacy skills in me from a young age. So it looks like this. One of the things that we would do before the school year is I would meet my teachers. And my mom was actually the advocate in the prep school setting to tell teachers about what I need as a child, how the equipment worked and everything, what other supports I need.
00:07:15
Speaker
how to be aware of when I don't catch something, when I don't hear something, how do they check in, all of that. So in a way, she actually was kind of the role of a teacher for the deaf. Yeah, I was going to say it kind of sounds like she's doing what I do. And it's interesting because that was what she had to do for us and I deeply appreciate that.
00:07:36
Speaker
And my speech pathologist, he was local and my audiologist would come in, but basically my mom got to a point where she was able to repeat word for word what they would have said that she was able to advocate for me in that way. And it takes really great coaching and really the goal, you should be able to mentor and coach your parents so that way they can explain what their child needs and everything. I'd like to bring up that point because as time went on, it became my job
00:08:06
Speaker
to tell my teachers what I needed and to advocate for myself. And what it looks like is my mom, for example, prior to those meetings before the beginning of the year, just to make sure I was not nervous, she would sit down with me and she would ask the same questions that a teacher would ask. Now, of course, with maturity, everything at school age is what's appropriate as it goes on. So for example, first, second grade was just simply telling the teachers that, hey, I have hearing loss.
00:08:34
Speaker
I just need some additional support. These are my cochlear implants. This is how I hear with them to understand and comprehend. It was basic like that. And then as I got older, I was able to put into words such as, I need you to wear the FM system, which I like. I have so many parents who love to use the Rogers for their children. And they're like, Oh, did you use the Roger your day? I'm like, yeah, that we're full old school FM system, like with the whole microphone, which everyone enjoys. So Bluetooth was not a thing.
00:09:04
Speaker
all that stuff. And tech is amazing how long it's come to help support children who choose to use hearing technologies and hearing-assisted technologies.
Understanding Listening Fatigue
00:09:13
Speaker
For real. Yeah. I like what you're saying though about the role-playing because I think as TODs we do this, but I like the idea of you doing it specifically for the beginning of the year stuff. So like us at the TOD, if we know we're going to have a kid at the end of the year, we know that we're going to have them in September again.
00:09:28
Speaker
which is often the case for us in June or May we can prep them and say hey at the beginning of the year we're going to meet your teachers before school starts which we often do not for everyone but it depends on the student a lot of times the younger ones we do and we'll say like they're going to ask you these questions like let's practice them together like we can do for our students in the end of the year what your mom did for you over the summer so that way when we go and we do that beginning of the year meeting which I do think is so valuable for the
00:09:56
Speaker
for the children to hear the parents explaining it, like you said, because eventually they'll be the ones to explain it, and then they'll be able to answer those questions more successfully. And to add that, when you hear your parent explain to others what you need, it's an affirming action. That's what I like to say. It's affirming that your disability is actually a good part of who you are,
00:10:18
Speaker
and not a negative experience. And so often we focus on disability and deafness as a negative experience. Now, historically speaking, everything out of all disabilities, deaf people and deaf culture have the biggest disability identity, which I think is awesome. But it is hard. How do you intersect the two and resonate the realities? And I find that
00:10:40
Speaker
when you prepare and equip and educate and champion, which is part of our mission, parents and coach them with how they can support their children and everything. You are also supporting the child as well. Create a safe space for the child to welcome and to affirm who they are and everything as well. And so because people ask me a lot, how do you become confident
00:11:04
Speaker
about your deafness and everything. And a lot of it is because I witnessed and saw affirmative action with my mother with how she advocated for me, but she also gave me autonomy over time. And I find that's where the pitfall is sometimes. And I really love it when I look at IUPs and I see self advocacy goals.
00:11:26
Speaker
and goals that keep in mind of that transition to middle school and high school because you're a bit more protected in elementary school. You know, most people know you for a little bit of a while and they get to middle school where you're going from classroom to classroom.
00:11:40
Speaker
You have a new group of friends, and then you say the same thing in high school. Yeah, it's always such an interesting thing to think about is when you start to transition those skills over to the student. And I would rather edge on the side of doing it too early than too late, because I can always provide more support if they need it. But I feel like if you give the kids high expectations, a lot of the children will rise to those expectations.
00:12:05
Speaker
Even in as young as preschool, if I notice the mic's not working, and I notice it and the preschooler doesn't, I'm going to have them tell the teacher, not me. So I'll have them like point to it if even if they can't verbally do it yet. Because if they're using a hat system, they should be able to advocate for it. Like if they're not ready to advocate for it, they might not be ready for a personalized hat system yet. I start as young as preschool with like if it's something that they can do even non verbally by pointing or something like that, just
00:12:34
Speaker
It's getting the ball rolling as in this is going to be the expectation eventually that this is something you're going to take ownership of. And then obviously I'm there to support them. I'm not relying on them to self-advocate to get their accommodations met. I think that's something that's important to remember is I can teach you to self-advocate but I'm also going to be there as a backup because you still deserve these accommodations.
00:12:57
Speaker
And there's a line between like what the teacher can do and what the student can do and I want everyone to do their part so that everything gets done. But yeah, really early I start and then obviously I'm there to support and then as they get older I support less as needed. But the beauty of that is a collaborative relationship between all members at the table.
00:13:16
Speaker
which is what it should be with the IEP and 504 teams both.
Advocacy for Empowerment
00:13:21
Speaker
It's the goal of those teams is collaboration and working together for the rare good. Because if you look at just what IDA law says alone, you realize that the goal of IDA
00:13:35
Speaker
is actually to allow the child to have a shot at being an adult with appropriate. And we know we could define what is appropriate is very different based on interpretation, but truly all goals are supposed to be to help the child to have a shot at being able to be an independent adult.
00:13:53
Speaker
Yeah, you know, so I think it's really cool to look at that and reflect and, um, but I do see often sometimes that people forget the goal and if people have tendency to get focused on the goals at that grade level and the next grade level.
00:14:07
Speaker
but not look at the five year plan. Yeah, I always think that's interesting too when I look at like self advocacy goals I owe even when they're like pretty specific like content like self advocacy goals like naming the parts of the year or like things like that I always try to tie it back to like, why do they actually need to know this?
00:14:25
Speaker
They need to know it because they need to be able to explain their hearing loss to somebody, or they need to understand when they go to an audiologist what type of hearing loss they have. That's the type of vocabulary that they need and why they need it. It's not just labeling the parts of the ear, even though when they're little, that's how it starts, but the actual purpose of that goal is for them to be able to articulate their experience.
00:14:46
Speaker
their hearing loss to peers, adults, like clinical professionals, what have you. So trying to keep that in mind, I think it's helpful because I feel like it's so easy to get like, what's that saying about like not seeing the forest through the trees or something like that? Like you get so caught in the details that you forget the bigger picture of why we're actually working on these skills.
00:15:08
Speaker
Absolutely. As an advocate and as someone who went to school, are there any self-advocacy goals that you think are the most helpful or that you see the most common? One of my favorite self-advocacy goals is something that I'm starting to see recently. I typically see it more with the signing Deaf community, but it's something that I hope to see a change in our generation and our time. I would love to see more self-advocacy goals where a Deaf mentor that has also expertise is part of the table because
00:15:37
Speaker
there is nothing more that helps a child who is deaf that chooses to use hearing technologies with LSL to also see role models that work alongside with the teachers for the deaf and work as part of the team and the classroom in returns also see that this student, because often for a lot of these students, they're the solitaire. We know this, we know the statistics and everything. Deaf children are often the solitaire and school systems unless you
00:16:05
Speaker
go to more of a deaf residential school. But let's just say for me, being in private school education, I was the only deaf child in my school system outside of my brother and my sister because they're all deaf. So their transitions were a little bit easier with teachers because teachers already knew who we were.
00:16:22
Speaker
Yeah, but you paved the way though. Yeah, my mom did too. But, but we often forget that it's isolating. It's isolating. And it's hard to advocate when you feel and you know, you're the only one. And it does not matter how amazing of a team you have some time and how affirming people are sometimes that does help.
00:16:46
Speaker
but it does help. It's why we thrive in community. So that's something I would love to see is self advocacy goals in the long run that deaf mentors of the child's language
00:16:58
Speaker
and communication mentality is at the table as well to help the child. Now, the goals that I've seen is when teachers for the deaf truly collaborate with the child's speech pathologist, that is a listening and spoken language specialist, and there are audiologists who should ideally also be a listening and spoken language specialist or auditory or verbal therapy specialist. And the reason that I want to highlight this is self-advocacy goals should not be talking about what you need,
00:17:25
Speaker
in terms of advocating for yourself, to have autonomy, everything. But you spend about eight hours in the school day, you know, with people, everything. And that day to day time, if you're missing certain sounds because you don't have the right cover point mapping or the right effective hearing acoustics and
00:17:45
Speaker
hearing, quality access for effective communication, then as a child, and this is something that we worked on as I got older, I started to catch on hints that if I was missing a certain sound, if I was talking a certain way, it means that it was time for me to get updated with my co-parent mapping or to give myself grace and realize that I just need some extra grace till I see my healthcare team and my
00:18:14
Speaker
team that cares for me just to give me the additional support that I need and may need additional support in those periods. I hope that makes sense. Yeah, that's really interesting actually because I never really thought about like I do have students that I know who have said like, who will advocate in the moment when they mishear something. However, I never tied it back necessarily to them advocating for a new map or a new program like that specifically.
00:18:40
Speaker
So I do teach students some like communication repair strategies like primarily like instead of just saying what or just saying can you say that again repeating all the parts they did here so that way that tells me what they got and what they didn't get so
00:18:58
Speaker
If they misheard a word, they'll tell me the word they did hear so that I can hear what the substitution was or what the deletion was. And then I make a note and then I email the audiologist, but now I'm thinking I should have them report to the audiologist or their parent or whatever, depending on how old they are of, I heard this sound. I wonder if that means there's something wrong with my programming.
00:19:19
Speaker
like to take it that extra step further of advocating I think is that's new to me I think that's a really good idea because they're they're advocating on a communication level but to advocate on like a programming level I think is like next level and let's be real if we listen look at listening and spoken language
00:19:38
Speaker
The foundation of that is amplification. That makes sense. Because you have to have high quality amplification in order to learn to listen. And we know that listening does not mean comprehension. But you have to ask a couple things. And it's funny because I was actually talking about this today with my team. One of my biggest frustrations with the audiology profession is streamlined mapping.
00:20:02
Speaker
It has its place. But we should be looking at the rate of progress for how children are learning to listen with their processors. And here's the way we like to say them. Precision coconut mapping should be done when there are indicators that streamlined programming is not optimizing a children with hearing loss, coconut plants hearing.
00:20:25
Speaker
Does that make sense? I'm with you. I know exactly what you're talking about, and I totally agree. Oh, but it does take critical thinking. And that is a bit of a niche that I feel we just have not done a good job bridging that gap yet with how do we coach parents? How do we work with the school team? How do we work with our teachers for the deaf and stuff, for the child's language, communication, modality? Because in my case, for example, I have speech apraxia.
00:20:53
Speaker
But there was a time period where I was not hearing Ls and Ws, which we know and you know how close those are. Yeah, and certainly not going to help you with the apraxia either. Exactly. And I also struggled with SNTHs. So again, those frequency allocation tables are I think we could have an entire audiology discussion. I'm not audiologist, but I'm a bit advocate for it because as somebody who has grown up with cochlear implants, in fact,
00:21:21
Speaker
it will be my 28th year of hearing with cochlear implants this coming week. Wow, congratulations. Thank you. That's amazing. Yeah, it's been a long time. But part of that autonomy and understanding what you need to be a successful adult who wears cochlear implants, I don't want to say the word successful cochlear implant user, but somebody who has a autonomy of her own cochlear implant mapping everything and is able to collaborate with professionals to start when you're young.
00:21:49
Speaker
Yeah, that makes so much sense. Because like, I do it for them. But I have them advocate for everything else. So why shouldn't it extend one more step to this as well? It's an age thing to you know, there's a maturity level. At what point can a child start catching? But what we saw is definitely when the reading level is meeting the norms of reading level. That's when I see that girls typically catch it better than boys. But we can look at
00:22:14
Speaker
um, neurophysiology, developmental windows, we know the science and everything, but it's something I like to stick in people's mind. It's your child. Language and communication modality is listening in spoken language, and they're just really struggling with a certain sound.
00:22:32
Speaker
And it's been a long time and they're still struggling. I would start asking questions are, is their hearing actually capturing the sound? Is it auditory access in the classroom that's not allowing them to hear the sound? Is it their hearing aids or is their cochlear mapping not capturing that sound, that frequency? So it's just a bit of, and I think that's what's cool because I feel we sometimes get stuck in the trenches of
00:22:57
Speaker
not using clinical science and education, but it's really cool because it gives you the opportunity to put on that clinical thinking hat that you guys worked so hard for and be able to use it another way. Yeah, I feel like that's really helpful to think about because one of the things my little mentor like drilled into me was just like a full access is mandatory. Like it's a non starter. If there's any sound that's not
00:23:24
Speaker
Sounding right like that has to be addressed first and foremost like you really can't out therapy bad access like I cannot fix a sound if they are not hearing it correctly I cannot teach them higher level vocabulary if they're not hearing the words correctly and so really anything having to do with access needs to be addressed like first and foremost and that's why
00:23:45
Speaker
We often collaborate with a private audiologist. At least where I work, we get a consent form so that way we can communicate with the private audiologist. And it really helps because if I notice things in school, sometimes it's different than at home. Or maybe the parents are not listening with as careful an ear. Or maybe they're just used to how their kids does certain things, which is totally understandable. But if I'm listening for it, and that's also when I come in to collaborate with the SLP,
00:24:11
Speaker
because I wanna talk with her about what's developmentally appropriate, what's not developmentally appropriate, what might be related to a sound issue if I notice a pattern. Like, if they're having an issue with SNTH, then that's clearly a pattern that I can report on as if it's, unless it's like some other random sound that
00:24:31
Speaker
maybe has a motor component or something like that. That's when you really collaborate with the SLP to figure out like, is this an access issue or is this a more articulation issue? And then talk to
Strategies for Listening Breaks
00:24:43
Speaker
the audiologist. But I always assume it's an access issue first, because if it is, you can't fix it anyway without the audiologist. So I do think that that's really helpful. In addition to that, it gives you guys a moment to educate and to help parents, especially parents who are single mothers,
00:25:00
Speaker
with how to find those resources and everything because I, single mothers have really a rough time, you know? And then we have a child who has a disability that's a lot more of a mental low and they often feel stuck in the trenches. They are doing the best they can for their child, but they just haven't been given the opportunity to understand or how to be coached with, be like, okay, this is what's going on.
00:25:26
Speaker
and versus being like, you know, my child's not getting this. Like, I don't know what to do. I'm lost for it. So I do think that teachers for the deaf and speech pathologists and oleologists who work with children whose language is listening and spoken language have a unique opportunity to also realize what is going on because you're with the child.
00:25:46
Speaker
eight hours a day when you're their teacher and to work with their teacher to be able to be like, hey, maybe this is if you feel like you're having a difficult time at home, maybe this is what's going on because we're capturing not data, but we're capturing what's going on better here. So let's try to see if we get you the right tools. Because that's what it's about is in order to make sure we have effective communication access,
00:26:07
Speaker
We make sure that we have the tools there for them. Absolutely. All right. I feel like it was like the first question I had written down. No, but that's good. I always like to see like I feel like people have so much information to share. I can't possibly think ahead of time of, you know, everything we're going to talk about.
00:26:30
Speaker
This episode is brought to you by my self-advocacy dice bingo games. I find games to be a really helpful way to start self-advocacy conversations with my students in a non-stressful, non-awkward way. These games require no prep, just print them out and bring some dice and you're ready to go for your session. There are six topics available, including remote mic situations, IEP and 504 vocabulary, and bluffing and problem solving. Link in the show notes if you'd like to check them out for your next self-advocacy lesson.
00:27:02
Speaker
One topic I really did want to touch on because I think it's really important and helpful is listening fatigue and helping students through listening fatigue, what it feels like from your perspective. I'm always curious to hear from people, you know, what it's like and what we can do about it as teachers in school. Yeah. So I think it's unique because at the time we didn't have the words for it, but
00:27:25
Speaker
And a parent of a deaf child can tell you they see it when it hits us. For me, I tend to be a high performance person. So for my mom, she said that car rides home were rough. So this is something I've given advice to other families whose child has cochlear implants for hearing aids in their communication and languages, listening and spoken language. I encourage them it's okay if your child zones out during the car ride.
00:27:52
Speaker
Like it's not the time to have the in-depth conversation about how their day was and everything. Um, because it depends on where the child is at. If the child has progressive hearing loss and is late implanted, you do want to make sure that you're getting that good wearing time and everything. But there needs to be space, hell and room, hell for the child to be able to decompress too. So for me, um, my mom did a couple things. She, we wouldn't really have conversations about our school day till dinner.
00:28:19
Speaker
And we would get home, and this is before we had sports and everything. But one of our favorite activities I remember growing up is I got 15 to 30 minutes of TV time, or my favorite computer games, which was Carmen's San Diego. I just love her. But I would do those without my devices on. Or I would have one device on, but we just were not talking. Like I'm not having to actively listen. And that's basically the goal of listening fatigue breaks, is you don't need
00:28:48
Speaker
It needs to be any activity that the child enjoys where they decompress and they are not actively listening. So for some people they can get away watching TV mindlessly and for others it may not be that. For me, I enjoyed reading in silence.
00:29:03
Speaker
So one of the things that as I got older and had more autonomy, I was allowed to do homework with my cochlear implants off. And it looks like that. It just depends on the age of the child or anything. But navigating that as a parent is challenging, you know, because you want to engage with your child after the school day is over, hear what's about, but usually by the end point,
00:29:23
Speaker
Yeah. Do you think you would have if you had the opportunity to take listening breaks? I know you probably didn't. But if you had had the opportunity to have listening breaks in school, would that have been helpful, do you think, in reducing that major break at the end of the day? Yes and no. I naturally had anxiety with wanting to take off my devices during school because I wanted to make sure I wasn't missing something. However, if you have a child that has a lot of independence and a lot more autonomy where they are comfortable with taking listening breaks,
00:29:53
Speaker
One of the things that growing up for me is we went to the library every day and there was always reading time. So for me, reading was my way of decompressing because it's absolute silence. I didn't have to actively listen to everything. And we had, you know, no talking to the library. So when was time to go? The teacher would come and tap my shoulder. Yeah. So for me, that's what ended up being my listening break. So that sometimes it just depends on the child, everything as well.
00:30:19
Speaker
Yeah, I typically, when I advise teachers, we don't recommend them taking the devices off in school. I mean, if they really want to, that can be something we talk about. But just from a safety perspective and everything, we generally encourage listening breaks with devices on, but in silence and with no expectations of listening. So they don't have to listen that you're going to call on them. So it's a set amount of time or a set situation.
00:30:46
Speaker
where it's quiet and there's no expectations of listening. So a lot of times that might even just be like a walk to the water fountain or like a lap around the loop of the hallway, you know, like it doesn't even have to be like a sitting down break necessarily, because for some children, they just have to leave the classroom to get that silence, which I totally understand. And then for other kids, like you said, sometimes it's like a library situation where during maybe during lunch instead of eating or after they eat lunch, they go and they sit in the library.
00:31:16
Speaker
for 10 minutes where it's quiet or something like that. Like we work them in so that they can have spaces of quiet. But generally speaking, we don't have them take devices off unless for some reason a particular student expresses a particular reason why they want to. And then we just make sure that that's safe for them. But that's kind of how I've approached listening breaks in school. But I do think that it's
00:31:39
Speaker
I always just like to hear how people explain it because it's such a hard thing to explain to teachers. They're like, I don't understand why they'd be tired from listening. Like, I'm not tired from listening. I'm like, you are not listening. It's the one machine analogy I like to give. I like to use battery analogies. So this is analogy because for me, the pandemic was brutal. A lot of people don't realize that I was a physical therapist when the whole pandemic started. So I lost
00:32:06
Speaker
all my visual cues when masks came out. And we even tried some of the clear masks and I had patients that didn't want to wear them. And a lot of things were out of my control. And the analogy that I gave to my coworkers that really resonated with them about listening to fatigue, because we were all exhausted. We were burnt out as healthcare providers and everything. And our break was lunch. And it's funny because it used to be a social time and I would try to hang in just to be sociable and a part of the team. But with the whole pandemic,
00:32:36
Speaker
It basically shifted our whole entire country culture, which was not a bad thing, to where we realized we needed to decompress. And what I told my coworkers, this was an analogy. So we all wake up with an iPhone at 100% battery, right? But if you have an app running in the background that takes a lot of battery power to use because your
00:32:58
Speaker
brain is legitimately working in the background the whole time to actually comprehend what is going on. And a person who has normal hearing has that same app running, but it's not really being actively used. It's just going to run the background, but it's not being actively used by lunchtime. Whose iPhone do you think it's be more dead? And that's where I like to use that listening fatigue analogy with iPhones for that reason, because it just gives kind of a number of snapshot for people who have
00:33:27
Speaker
I mean, because we use iPhones every day, we use technology every day. And we know how peeve we get when the battery is almost nearly dead. But for a child with hearing loss, who uses hearing technologies
00:33:43
Speaker
and other supports to try to navigate conversations and different things through the end of the day. That iPhone battery may be nearly dead by the time the parent comes to get their child. And that's why, say, listening fatigue is a real thing because some of them are trying really hard, but if their battery's so dry and they don't get time to recharge and get a little bit of juice in them, you're not gonna get anything from them.
00:34:06
Speaker
Yeah, that's such a good analogy. I feel like that's really that'll really resonate with people who have phones, which is everyone. It's so true. Like if you're streaming on your phone, your phone is going to die a lot faster because it's actively working. And if you're listening to a cochlear implant, your brain is actively working. It's literally
00:34:27
Speaker
It's not the same as natural listening. You have to filter out what's going on around you. And if that app, so to speak, is running in the background, your battery is going to get drained faster. I think that's a very helpful analogy. Thank you for sharing that. Of course. OK. Do you have any suggestions for TODs who have students who might feel embarrassed or ashamed of their hearing loss? And what can we do to foster self-esteem and self-acceptance with our
Deaf Mentors and Self-Esteem
00:34:55
Speaker
students?
00:34:55
Speaker
And that goes back to my comment earlier. The importance is to having deaf role models in the child's language and communication mode. And it definitely helps a lot more. First scenario, just to preface, so I have the pleasure of being able to be a deaf mentor for a couple of children in the school district that I am in.
00:35:17
Speaker
that have poker plants, but especially the girls. And I find that's really cool because one, you know, you just need somebody you vibe with. We just know that it's just relational. And two, it helps them realize that they're not alone. So but I realize that's not a reality yet, but it's one that I hope for. Can I ask you, like, in what capacity are you working with them? Like, are you employed by the school district? Is it a volunteer? Volunteer as of now?
00:35:45
Speaker
But I am actually part of the self advocacy pushing sessions. Okay, that's really cool. Yeah, exactly. It's really cool. You know, I like to remind people that the current generation of people with disabilities are the ADA generation because the American of Disabilities Act was signed in the 1970s. And now we have all the children born and the adults of today
00:36:13
Speaker
are the future mentors, really, is what I'm saying a lot with public policy. And that's a whole other conversation. Yeah. I mean, we have a deaf mentor program in New Jersey, but it's primarily for early intervention. So it's for families who want a deaf mentor of any modality, depending on what they're interested. They have whistles ones. They have signing ones. They have both, you know, really whatever family is interested in meeting and getting mentored on. But that is an early intervention program. And it's really interesting to think about that continuing
00:36:41
Speaker
into the school age, because like you can definitely see how like, yeah, deaf mentor can certainly help a family, but a teenager, they could definitely help, you know, like on a totally different level. Yep. But in the meantime, one thing that I recommend again is if the child is embarrassed or something about that, I typically see is because they've been
00:37:03
Speaker
They've had negative experiences where somebody has advocated for them and advocate for them in a way that they are less than. So I almost put the fault of that and the feelings of shame, embarrassment that come in from the experiences that we have where we feel blessed them. And so it takes time and it takes healing to realize that you are not less than, but you just are who you are.
00:37:30
Speaker
And that takes time. So that is where my advice for teachers who are navigating that. I find that we sometimes are so quick to try to problem solve and create solutions when what they need is emotional support. And I think there is a way to create a safe space that gives them emotional support.
00:37:52
Speaker
and also potentially encourage is, aren't those students involved with a community where they know they're not overwhelmed? Whether the school provides it or not, like we are trying to do in my case, but because it's like you said, well, in certain states, your earlier invention is really strong where there's that exposure to the deaf community overall and all of our spectrum, but I don't see that continuum. That encouragement, that continuum, and I think that if we really
00:38:21
Speaker
added that piece and it would make a really big impact for a lot of people and families especially. So it's where my advice would be is make sure that you are holding space to let them process their emotions because more than often those feelings of being inadequate of being not enough
00:38:41
Speaker
being embarrassed and being ashamed have come from some experience where they just need someone to hear them out, really. Yeah. I think that's really helpful to remember because I feel like I can be one of those people sometimes where I'm quick to try to fix a problem instead of just listening to the person experiencing the problem. And I've tried to be better at that, even in my personal life. I'm just like, I want to fix it, you know? Me too.
00:39:08
Speaker
but holding that emotional space. And we talked about this a little bit in another episode, too, of just like sometimes just being there for them and listening. And then when they're ready to address it, they know that they can come to you when they're ready, because you've been like a safe space for them in the past. So sometimes it might not be exactly like, like I know we want them to advocate for themselves. But if they're not ready to
00:39:33
Speaker
talk about it in a public forum yet like or like and by that I mean like a classroom they want to be more private about it like that's okay and we can support them through that emotionally until they're ready to raise their hand and ask for clarification if that's if that's the path that we're going to go that's totally fine and so creating that safe space is important
00:39:52
Speaker
And then every child is different. Some people like visual cues, but I like to remind people all the time, most children who are deaf are your most hypervigilant people. So vigilant. Because we're reading body language and some of the process is when you've been through trauma yourself, you have the tendency to over read body language and be hypervigilant. And like, oh gosh, I even remember like in middle school, because it's a blessing and it's a curse. I am actually an exceptional
00:40:22
Speaker
Lipuretor, most people tell you that we know studies and stuff that lip ring most people capture 40%
00:40:28
Speaker
We have had me test it. I capture about 80%. Amazing. And honestly, that's just one people ask me, how did I overcome my speech apraxia? It's because I learned motor. But anyways, when you've been through trauma, and you've been through experiences of where you've been made less than or accumulated or shamed, you get really hyper aware that you think that people are talking about you all the time.
00:40:54
Speaker
And it doesn't help that when you already are hypervigilant about body language, that you may miss recuse as well. So you have to hold space for that as well. And that's something that I would like to see just down the road is, are we not talking about just how to be a strong advocate, but are we appealing to the emotional side of advocacy, realizing that when do we need to create a safe space for ourselves?
Emotional Intelligence in Self-Advocacy
00:41:19
Speaker
When do we need to realize, okay,
00:41:21
Speaker
Right now I am in my fight and flight. I'm not going to be a good advocate for myself. Well, because I'm over reading this person's body language and that's not going to be safe for my system. If you understand where I'm going with this. I do. Yeah. It's a really interesting way to think about it. It's like even children who like have a lot of the knowledge and they know a lot of the strategy is
00:41:43
Speaker
There's more to it than knowing what to do. It's also being comfortable enough to do it. And not every situation is going to be like that. And sometimes having the almost like emotional intelligence to figure that out is something that we can help our students navigate through. Sometimes when I feel like I need to work on that and I'm not sure exactly how to do it, I connect with the school psychologists because they're a really helpful person who is trained
00:42:09
Speaker
in emotional intelligence and emotional regulation. And they might have resources that are specifically about, you know, confidence or self-esteem or dealing with trauma. And then I can use those through a hearing perspective about self-advocacy, but I don't have to make it from scratch because that's a big thing to handle. And like, I don't necessarily know how to handle everything appropriately when you get into that territory. So I want to make sure I'm not doing any harm.
00:42:39
Speaker
So collaborating with other like if you do take two specialists and put them together, you might have what you're looking for. And that's all again, that's what say it's all goes back to the collaboration, you know, I do cheese.
00:42:52
Speaker
But I find it's true you really do have to be a jack of all trades. Oh, yeah. And I'm a little specialist. So I'm already specialized and I still feel that way. You know, and the reality is you are doing the best you can. And two, this is one of the things I like to remind people as I was a public health physical therapist, giving quality care and being trauma informed means that you always know that you you will inevitably cause trauma at some point in your life no matter how perfect of human you are.
00:43:20
Speaker
But that's where you need to have those resources and those connections that you can reach out to to figure out how to navigate and how to help a child. Because really, if we're tying back to advocacy, advocacy is a form of empowerment, where it's not just about what you do, you can coach someone all day. But if you don't have the emotional appeal or the emotional intelligence that comes with that, and facilitate that piece, then you're gonna have some weak advocacy there.
00:43:50
Speaker
Oh, so good. That's so helpful. I feel like that's such a missing component of what we're doing. So I'm so glad that this is where our conversation led to because I think it's going to be really valuable for TODs to think about their self advocacy lessons with that emotional filter.
00:44:06
Speaker
on top of it. Because like you said, you can have all the information in the world, but you need to be able to actually come from a place to be able to use it. So because recognizing sometimes someone's not worth your time. Like, it's so true. It's true. And sometimes you just have to realize and be okay with wins or losing battle because that's the reality of having a disability, whether it's physical or invisible is realizing you're not gonna win every advocacy battle.
00:44:33
Speaker
And you have to mentally prepare children because that's the real life world. And that's also the world in middle school and high school as well. But if you can create that confidence and that just awareness slowly, it's going to come as well. Amazing. Thank you so much for all that great information. I think that's going to be
00:44:52
Speaker
So helpful. If anyone listening wants to find you online or get any more information, could you share all your info?
Contact Information and Nonprofit Launch
00:45:00
Speaker
Absolutely. So you can find me on Instagram at jess.h2. So that is j-e-s-s period h-s-q-u-a-r-e-d.
00:45:13
Speaker
Or you can find us at our nonprofit Instagram. We are in process of having our website launched, which be in October. I'm super excited. Instagram for our nonprofit is C A N G deaf, which stands for Center for Advancement of Next Gen Deaf. But I have that linked on my profile. So the easy thing is if you're curious about what we're doing in terms of direction with our resources that we'll provide for parents and for families,
00:45:38
Speaker
And for people who are deaf as well, we'll have more sources. But I'm an open book. I've had people message me on Instagram. Just give me a message and I will do my best to respond as well.
00:45:49
Speaker
Great, I'll link all of that too in the show notes for people. So if you want to just scroll on down and click on it, it'll be right there for you. And that's everything for today. Like I said, everything will be linked and the transcript will be linked below and at listentotodpod.com. If you have any questions or want to be a guest on a future episode of the Todd Pod, please DM me on Instagram at listeningfun. Have a great week and I'll see you next time. Bye.