28: Self-Advocacy for CI Users with Jess Hissam
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:
Center for Advancement of NEXTGEN Deaf Instagram
This podcast is brought to you by:
transcript episode 28: Self-Advocacy for CI Users with Jess Hissam
D: Hello and welcome to the TOD 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 Fun and today we're talking with Jess Hissam about her experiences growing up as a cochlear implant user and how we as TODs can support our students better. Thanks so much for being here Jess.
J: Thank you for having me here I'm really excited to be here today.
D: Me too. Could you tell everyone a little about yourself and your background?
J: Absolutely. Hi, my name is Jess Hissam 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 with hearing technologies, that is more my expertise. I do also work with families who are bimodal 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.
D: Yeah I love following you on Instagram! [LAUGH]
J: Thank you I appreciate it.
D: 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, you just have a lot of good information about how things work. So let's go back to your school years. What kind of school did you go to? What kind of services did you receive?
J: An interesting question I get a lot because to preface a little bit if you follow me on Instagram which is jess.hsquared you'll hear a little bit about my deaf journey with special education and earlier intervention system. Just how my state denied me of services and because my state denied me of services, it did 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 3 times a week at the time, so that's a 4 hour round trip.
D: Wow.
J: So 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 these supports at the time, that we see more of today with the quality of speech pathologists 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 and I had um speech apraxia. So I really truly had to be the clinical speech pathologist that was a auditory verbal therapist and there ah 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. And one of the reasons I really like to talk about this as an advocate that is really interesting is because we know today and with law that private schools are not required to provide supports to people with disabilities. However, the private school that I was um 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 and I had IEP for the speech service 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 therapist in Central Alabama to help give me the support that I need and and with that I did have a IEP because my mom was a stellar advocate. And when I basically graduated from auditory verbal therapy. That's when I just then stuck 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, if you are in a private school, 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 attorney special education advocate. It's not legal advice but legal information.
D: Very good. [LAUGH] Yeah, that's interesting because even um 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 to remember if you're helping a family advocate or looking at different options especially in some areas like some more rural areas maybe resources maybe have to be a little more creative with resources.
J: Exactly.
D: 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 like lucky to live in a like a dense state. So like there's a lot of kids in a short area. But those rural to TODs are like doing the work for sure. [LAUGH] Um...
J: For sure.
D: 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 with a really good advocate, so in what ways did the adults advocate for you?
J: This is one of things that I like to talk about all time because we understand with IDEA when you look at IEP, we look at self advocacy goals and this is something that I'd really like to highlight because it one: it highlights the importance of d/Deaf mentors and d/Deaf advocates in the school districts of the child's language and communication modality 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 takes coaching it takes just self-awareness and a lot of things. So, the third thing is there's... go ahead.
D: 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.
J: 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 of the Deaf are trained and serve as children who are signing deaf which is great but we don't have any Teachers of the Deaf really around here who are both they 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 her, my audiologist who is a family friend for us 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... I, 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, um what other supports I need, 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.
D: Yeah I was going to say it kind of sounds like she's doing what I do. [LAUGH]
J: And it's interesting because that was what she had to do for us and I deeply appreciate that and um, my speech pathologist who 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 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. And I like to bring that at that point because as time went on, it became my job to tell my teachers what I needed and to advocate for myself. And what it looked 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 as school ages, what's appropriate as it goes on. So for example, first, second grade was just simply telling teachers that hey I have hearing loss I just need some additional support. These are my cochlear implants, this is how I hear with them to understand it 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 laugh, I have so many parents who love to use the Rogers for their children and they're like, oh did you use the Roger in your day? I'm like yeah that, were whole old school FM system like with the whole microphone, everything, which they enjoy. So bluetooth was not a thing. All that stuff and tech is amazing, how long it's come to help support children who choose to use hearing technologies and hearing assistive technologies.
D: For real. Yeah I like though what you're saying though about like 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 as the TOD, if we know we're going to have a kid and we have a kid at the end of the year we know that we're going to have them in September again, 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 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.
J: Yeah, 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 is is affirming that your disability is actually a good part of who you are, 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 had 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 when you prepare and equip and educate and champion, which is our 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 about your deafness and everything? And a lot of it is because I witness and saw affirmative action with my mother, how she advocated for me but she also gave me autonomy over time. And I find that's where the pitball is sometimes and I really love it when I look at IEPs and I see self advocacy goals 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 and they get to middle school where you're going from classroom to classroom. You have a new group of friends and then you see the same thing high school.
D: Yeah I always... it's always such an interesting thing to think about is when you start to transition those skills over to the student and I always I like 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 like high expectations, a lot of the children will rise to those expectations. Even 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 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. So, I start as young as preschool with like if it's something that they can do even nonverbally by pointing or something like that just 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 like 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. 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.
J: But the beauty of that is a collaborative relationship between all members at the table which is what it should be with the IEP and 504 teams though. That's the goal of those teams is collaboration and working together for the greater good because if you look at just what IDEA law says alone, you realize that the goal of IDEA is actually to allow the child to have a shot at being an adult with appropriate... and we know we can define what is appropriate, it's 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.
D: Yeah.
J: You know, so I think it's really cool to look at that and reflect and but I do see often sometimes that people forget the goal. And if people have tendency to get focus on the goals at that grade level and the next grade level but not look at the 5 year plan.
D: Yeah I always think that's interesting too when I look at like self advocacy goals I even when they're like pretty specific like content like self advocacy goals like naming the parts of the ear or like things like that I always try to tie it back to like why do they actually need to know this. 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 like that's the type of vocabulary that they need and like 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 their hearing loss to peers, adults, like clinical professionals, what have you. Um, so trying to keep that in mind I think is helpful because I feel like it's so easy to get, like ah, what's that 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.
J: Absolutely.
D: As an advocate and as someone who like went to school are there any like self advocacy goals that you think are the most helpful or that you see the most common?
J: One 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 LSL expertise is part of the table because 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 um deaf children are often the solitaire in school systems, unless you 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 my sister because they're all deaf. So their transitions were a little bit easier with teachers because teachers already knew who we were.
D: Yeah, you paved the way though. [LAUGH]
J: But yeah, well my mom did too. But um, 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 sometime and how affirming people are sometimes that does help but it does help it's why we thrive in community you know? So that's something I would love to see is self advocacy goals in the long run that d/Deaf mentors of the child's language and communication modality is at the table as well to help the child.
Now good 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 their are audiologists who should ideally also be a listening and spoken language specialist or auditory verbal therapy specialist and the reason that I wanted to highlight this is self advocacy goals should not be talking about what you need in terms of advocating for yourself to have autonomy everything. But do you spend about 8 hours in school day. You know with people everything and that time if you're missing certain sounds because you don't have the right cochlear implant mapping or the right effective hearing acoustics and hearing quality access for effective communication than 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 I was time it was time for me to get um, updated with my cochlear implant mapping or to give myself grace and realize that I just need some extra grace till I see my healthcare team and my team that cares for me just to give me that additional support that I need and may need additional support in those periods. I hope that makes sense.
D: 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. 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 hear so that way that tells me what they got and what they didn't get. So if they misheard a word, they'll tell me the word they did hear so that I can I can hear what the substitution was or what the deletion was and then I make a note and then I emailed 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. I heard this sound I wonder if that means there's something wrong with my programming 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.
J: And let's be real if we listen look at listening and spoken language The foundation of that is amplification the next 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. 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'd like to see... precision cochlear implant mapping should be done when there are indicators that streamline programming is not optimizing a child with hearing loss cochlear implants hearing. Does that make sense?
D: I'm I'm with you [LAUGH] I know exactly what you're talking about and I totally agree.
J: 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 um, 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 you know in my case for example I had speech apraxia but there was a time period where I was not hearing Ls and Ws which we know and you know how close those are.
D: Yeah, and that's certainly not going to help you with the apraxia either.
J: And exactly and I also struggle with S and THs. So again, those frequency allocation tables are thing we could have entire audiology discussion I'm not audiologist but I'm a big advocate for it because as somebody who has grown up with cochlear implants, in fact, it will be my twenty eighth year of hearing with cochlear implant this coming week.
D: Wow congratulations that's amazing.
J: Thank you. 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 work successful cochlear implant user but somebody who has autonomy of her own cochlear implant mapping and everything is able to collaborate with professionals to start when you're young.
D: 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 1 more step to this as well.
J: It's an age thing too. You know, um, 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 reading level. That's when I see that um, girls typically catch it better than boys. But we can look at Neurophysiology developmental windows, we know the science and everything but it's something I like to stick in people's mind if your child language and communication modality is listening in spoken language and they're just really struggling with a certain sound 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 to hear the sound? Is it their hearing aid or is their cochlear implant mapping not capturing that sound at 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 not using clinical science in education. But it's really cool because if you see the opportunity to put on that clinical thinking hat that you guys worked so hard for and be able to use it another way.
D: Yeah I feel like that's really helpful to think about because one of the things my LSLS mentor like drilled into me was just like ah full access is mandatory like it's a non-starter if there's any sound that's not 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 we often collaborate with the private audiologist at 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. Um, which is totally understandable. But if I'm listening for it and that's also when I come in to collaborate with the SLP because I want to 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 S and TH then that's clearly a pattern that I can report on as if it's unless it's like some other random sound that 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 the audiologist but I always assume it's an access issue first because if it is you can't fix it anyway without without the audiologist. So I do think that that's really helpful.
J: And then also in addition to that it gives you guys a moment to educate and to help parents especially parents who are single mothers with how to find those resources everything because um, 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 mental load and they often feel suck at 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 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 audiologists who work with children whose language is listening and spoken language have a unique opportunity to also realize what is going on because you were with the child 8 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 we'll 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. We make sure that we have the tools there for them now.
D: Absolutely. Alright I feel like that was like the first question I had written down but [LAUGH] Ah, 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.
[MUSIC]
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’s 6 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!
[MUSIC]
D: 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.
J: Yeah, so I think is unique, um, because at the time we didn't have the words for it but any parent of a deaf child can tell you they see it when they 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, or hearing aids and their communication and languages listening and spoken language I encourage them. It's okay, if your child zones out during the car ride. Like it's not the time to have the in-depth conversation about how their day was and everything 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 gaining that good wearing time and everything but there needs to be space held and room held for the child to be able to to decompress too. So for me, my mom did a couple things she we wouldn't really have conversations about our school day till dinner 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 um, my favorite computer games which was Carmen Sandiego, 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... it 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. So one of things is that as I got older I 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 but navigating as a parent is challenging you know because you want to engage with your child after school days over, hear what's about, but usually by the endpoint... done. Done. Done.
D: 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 and reducing that like major break at the end of the day?
J: Um, 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 like taking listening breaks, one of the things that um, growing up for me is we went to the library every day and then there's always reading time. So for me reading was my way of decompressing because it's absolute silence I didn't have to actively listen 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.
D: Yeah.
J: So for me, that's what end up being my listening break so that sometimes it just depends on the child everything as well.
D: Yeah I typically when I um like 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 like a safety perspective and everything. Um, we generally encourage listening breaks with devices on but in silence and with no expectations of listening. So like they don't have to listen that you're going to call on them. So it's like ah a set amount of time or a set situation 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. Um, 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 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.. 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 through a machine. [LAUGH]
J: There's analogy I like to give I like to use battery analogies. So this is an 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 all my visual cues when mask came out and we even tried some the clear mask 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 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, it basically shifted our whole to our company culture which was not a bad thing. To where we realized we needed to decompress. And what I told my coworkers this was the analogy: so we all wake up with an iphone a hundred percent battery right? But if you have an app running in the background that takes a lot of battery power to use because your 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 why I like to use that listening fatigue analogy with iphones for that reason because it just gives kind of a number snapshot for people who have I mean because we use iphones every day we use technology every day. And we know how peeved we get when the battery is almost nearly dead but for a child with hearing loss or a child of hearing loss who uses hearing technologies and other support to try to navigate conversations and different things through the end the day. That iphone battery may be nearly dead by the time the parent comes to get their child.
D: Yeah.
J: And that's why say listening fatigue is a real thing because some of them are trying really hard. But if their battery is so drained 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.
D: 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 um [LAUGH] but it makes much sense because you it's so it's so true like if you're streaming on your phone your phone's going to die a lot faster because it's actively working. And if you're listening through a cochlear implant, your brain is actively working. It's literally like it's not the same as natural listening you have to filter out what all that what's going on around you and if that app so to speak it's running in the background you're going to your battery is going to get drained faster I think that's a very helpful analogy. Thank you for sharing that.
J: Of course.
D: Okay, 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 students?
J: And that goes back to my comment earlier. The importance is to having d/Deaf role models in the child's language and communication mode and it definitely helps a lot more. For scenario just to preface, so I have the pleasure to be able to be a deaf mentor for a couple of children in the school district that I am in that have cochlear implants 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 because.
D: Can I ask you like and what capacity are you working with them like are you employed by the school district is it a volunteer?
J: Volunteer as of now. But I am actually part of the self advocacy push in sessions.
D: Okay, that's really cool.
J: Yeah exactly and'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 Disabilities Act was signed in the 1970s and now we have all the children born and the adults of today are the future mentors really is what I'm seeing a lot with public policy and that's a whole nother conversation. But...
D: 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 LSLS ones, they have signing ones, they have both you know. Um, 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 into the school age because like you can definitely see how like yeah a d/Deaf mentor can certainly help a family but a teenager they could definitely help you know like on a totally different level.
J: Yeah, but in the meantime one things that I recommend again is if the child is embarrassed or something about that I typically see its because they've been, they've had negative experiences where somebody has advocated for them and advocated 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 less than and so it takes time it takes healing to realize that you are not less than but you just are who you are and that takes time. So that is where my advice for teachers from the deaf you 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 emotional support and also potentially encourage those students involved with a community where they know they're not alone. Whether the school provides it or not. Like we are trying to do in my case but um 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 and that continuum. And I think that if we really added that piece in it would make a really big impact for a lot of people and families especially.
D: Yeah.
J: 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, being embarrassed, and being a shame, have come from some experience where they just need someone to hear them out really.
D: 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, you know it's just some people I'm just like I wanna fix it, you know?
Both: [LAUGH]
D: 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 talk about it in a public forum yet like or like and by that I mean like a classroom. If 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.
J: And so creating that safe space is important and then every child is different some people like visual cues but I like to remind people all time most children who are deaf are your most hyper vigilant people.
D: So vigilant.
J: Because we're reading body language and some of the process is when you've been through trauma yourself. Um, you have the tendency to over read body language and be hyper-vigilent and like oh gosh I even remember like in middle school because it's a blessing and to curse I am actually an exceptional lip reader. Um. Most people tell you that we know studies and stuff that lipreading most people capture 40% we have had me test it I capture about 80%.
D: Amazing.
J: And honestly, that's just when people asked me how did I overcome my speech apraxia it's because I learned motor. But anyways, you've been through trauma and you've been through experiences of where you've been made less than, or humiliated, or shamed you get really hyper aware that you think that people are talking about you all the time. And it doesn't help that when you already are hyper vigilant about body language, that you may misread cues as well.
D: Interesting.
J: 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 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. When do we need to realize okay, right now I am in my fight or flight I'm not gonna be a good advocate for myself. Well because I'm overreading this person's body language, and that's not gonna be safe for my system if you understand where I'm going with this.
D: I do. It's a really interesting way to think about it is like even children who like have a lot of the knowledge and they know a lot of the strategies 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 psychologist. Because they're a really helpful person who is trained 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 ah, 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 [LAUGH] so collaborating with other like if you to take two specialists and put them together. You might have what you're looking for. [LAUGH]
J: Yeah, and that's all again, that's what say it's all goes back to the collaboration. You know I do tease um, but I find it's true. You really do have to be a jack of all trades. [LAUGH]
D: Oh yeah, and I'm a LSLS specialist so I'm already specialized and I still feel that way.
J: Exactly you know and but the reality is you are doing the best you can and 2 this is one of things I like to remind people as I was a pelvic 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 your life no matter how perfect of human you are. But and 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.
D: Yeah, 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 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 I love that.
J: Recognizing sometimes someone's not worth your time like you them.
D: That's so true.
J: It's true and sometimes you just have to realize and be okay with when's a 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 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. You know, but if you could create that confidence and that just awareness slowly it's gonna come.
D: Yeah amazing thank you so much for all that great information. I think that's going to be so helpful. If anyone listening wants to find you online or get any more information could you share where all your info.
J: Absolutely so you can find me on Instagram at jess.hsquared So that is j e s s period h s q u a r e d or you can find us at our nonprofit Instagram we are in process of having our website launch 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 easiest thing is if you're curious about what we're doing in terms of direction with our resources that we will provide for parents and for families and for people who are deaf as well, we'll have more resources up, but I'm an open book I've had people message me on Instagram. Just shoot me a message and I will do my best to respond as well. So.
D: 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 listen to todpod.com If you have any questions or want to be a guest on a future episode of the TOD POD, please DM me on Instagram at listeningfun Have a great week and I'll see you next time. Bye!