Our fifth Child’s Voice Podcast was released on October 24, 2018.  To listen to the Podcast, please Click Here.

Episode 5

Show Notes

On today’s episode of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Jessica interviewed fellow colleague and Teacher of the Deaf, Anna Tess, and parent of a child with hearing loss and former colleague, Lucy Espinoza, to gain their unique perspective on the importance of teaching self-advocacy skills to children with hearing loss.

Anna wears bilateral cochlear implants and Lucy’s son, Frankie, wears bilateral hearing aids and attended Child’s Voice’s Early Intervention, preschool, and primary programs over the course of five years before transitioning into a public school program.

On today’s episode,

  • Lucy and Anna help us define self-advocacy, discuss what types of skills fall under the umbrella of self-advocacy, and dive deeper into the specific self-advocacy skills that are so important for children with hearing loss to learn.
  • We take a closer look into why self-advocacy matters so much for our children (and future adults) with hearing loss.
  • Anna shares her own experience practicing these important skills and learning to advocate for herself over the course of her life, through her elementary, high school, and college education and into her professional career.
  • Lucy shares how she, with the help of Frankie’s teachers and audiologist’s, is working on teaching self-advocacy skills to her son. And Anna shares how she works on these skills in the classroom with her young preschool and elementary-age students at Child’s Voice.

Show Transcript

 

Tatum (T): Welcome to Episode 5 of All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect families of children with hearing loss with the professionals who serve them. We’re your hosts. I’m Tatum Fritz.

 

Jessica (J): And I’m Jessica Brock. This week we will be talking about the importance of teaching self advocacy skills to children with hearing loss with our colleague Anna Tess and our former colleague and parent of a child with hearing loss, Lucy Espinoza. Welcome Anna and Lucy.

 

Anna (A): Hi!

 

Lucy (L): Hi!

 

T: Before we begin our discussion on self-advocacy, let’s learn a little more about our guest speakers. Anna works as a teacher of the deaf in our preschool at Child’s Voice, and uses bilateral cochlear implants and as Jessica said Lucy is the parent of a child with hearing loss. Her son Frankie attended Child’s Voice for five years. During that time, Lucy also worked as a teaching assistant for Child’s Voice’s early intervention toddler group. Anna do you want to share some  about your role at Child’s Voice and how you got into working in the hearing loss field?

 

A: So I started in the hearing loss field because I’m profoundly deaf myself. I was born with a profound hearing loss and when I was about a year and a half my parents realized something was wrong, so they got me diagnosed with a profound hearing loss. I got my first cochlear implant when I was 2 and a half and my second one when I was 19. But I accredit a lot of my success back to my teachers so that’s what really kinda got me into the field of teaching. And then I really wanted to be an audiologist but my mom said she thought I would be a better fit as a teacher so that’s kinda how I got into the field of teaching. And I kinda like to say that it’s like paying it forward to all the teachers and everything that they did for me.

 

J: Aw that makes my heart feel good! Do you want to talk a little bit about what you do at Child’s Voice now.

 

A: So at Child’s Voice I’m a teacher in the learning center which is preschool to second grade. We work on a lot of self-advocacy skills, mainstreaming skills, math, science, social studies, phonics, phonemic awareness, and just boosting their confidence and getting them ready for the mainstream.

 

J: That’s awesome. Lucy, do you want to share a little bit about your family and your son Frankie?

L: Well we’re a family of four. Frankie is my oldest, and I have Fernando, he’s the second. Frankie right now is nine years old. He was also born with hearing loss, he lacked oxygen at the time of birth so that’s what they say caused his hearing loss. He started early intervention right away and in early intervention one of our therapists mentioned Child’s Voice and that’s how we came to Child’s Voice. He did awesome at Child’s Voice and now he’s in a mainstream program at one of our school districts close to home.

 

T: Do you want to talk more about just briefly about his transition out of Child’s Voice and into the new program he’s at?

L: So Frankie graduated Child’s Voice second grade. He was mainstreamed for third grade. In the beginning he did awesome. He was loving going to a new school, loving his friends. But around November/December, I did notice that Frankie was not interested in going back to school. He would cry every night saying he didn’t want to go back to school. So I started doing some research and after speaking with the teachers they did let me know that Frankie was kind of not doing as well as how he started. So we started looking to other programs and we did find one close to home where it’s a self-contained classroom. There’s about six kids there. They’re very much like Child’s Voice but it’s a total communication class. So he has some subjects where he’s in that classroom and there’s other subjects where he does fine and he is mainstreamed.

 

J: Going back to when he was at Child’s Voice, and you worked as a teaching assistant in the toddler group program, what was that like, working with other families and children in the toddler group program?

 

L: It was awesome! Well first of all I love babies! Everything I learned with Frankie I loved sharing it with everyone else. Like Anna said it’s kind of like you’re paying it forward to all the families and letting them know, like, “hey look, I have an older son, he’s doing great, your child will be there one day as well.”

 

J: It’s a good feeling!

T: Yeah you do a lot of working with other families; aren’t you also part of Guide By Your Side?

 

L: Yes, so Guide By Your Side is a program for families that have children with hearing loss. It’s free and you just get resources, you talk to another parent that has a child with hearing loss, and you just become friends and kind of like a family. And you just let them know that right now it might be tough but later on you’ll see everything will be okay.

 

T: Aw!

 

A: That’s awesome.

 

J: Alright before we get into the main discussion, do either of you have a favorite story from the past week. Perhaps Anna about a student or Lucy about your family?

 

A: I have two stories.

 

J: Let’s hear ‘em!

 

A: The first one was this past week, I always say “oh sweetie” or in the classroom “oh dear” and lingo like that and one of my students as we were walking out of the classroom, I tripped over the door and one of my students said “oh sweetie, are you okay?” *laughs* and that’s when I really knew that they’re listening and in tune with what I’m doing.

 

T: That’s so cute.

 

J: And then do you have another one?

 

A: Yeah, another story is just… more so with a lot of our students, when I taught in P1 there was one student that I had and she didn’t talk at all. And she just graduated in May or she was recognized in May and then left in July talking in full sentences and that was probably my biggest success story was watching her over three years grow and become a little person of her own.

 

T: Aww, at our graduation, just for listeners, all the students say a speech, and it’s the most heartwarming event of the year. And it’s in front of like….

 

J: A lot of people.

 

T: More than probably I’ve ever said a speech in front of.

 

A: Over a hundred.

 

J: Very courageous, resilient little kiddos and they  go off and do awesome things. You can attest to that, right?

L: Yes! So my story… well Frankie obviously has speech therapy. Fernando though he’s perfectly fine, he does not have a hearing loss. The other day they were talking about hurricanes and Fernando said “hurnicane” and Frankie said “Nando, you don’t say hurnicane, you say HUR-A-CANE” so to me I’m like oh my god my deaf child is teaching my normal hearing child how to say a word instead of the other way around and so I thought it was something funny.

 

J: I love that he chained it for him like “Hur-a-cane”

 

T: Yeah he’s probably learned some speech strategies.

 

*laughs*

 

T: Okay well why don’t we get into our main discussion then. As Jessica mentioned today we will be talking with Anna and Lucy about the importance of teaching self advocacy skills to children with hearing loss. Why don’t we start just by defining self-advocacy for our listeners. Do either of you want to go first?

L: Self advocacy to me, for my child, means that they are able to understand what is being said around them. If they don’t they need to speak up and say “hey I didn’t hear that” or “Can you repeat that?”

 

A: And building on what Lucy said a lot of what we teach in my classroom is changing their batteries and if the hearing aid breaks or the FM is not syncing, being more proactive to say, “It’s not working” or then troubleshooting the devices themselves because when they do go to the mainstream there’s a teacher who has 24 students or more and they don’t have time to necessarily troubleshoot. So teaching our students to be proactive and take care of things on their own.

 

T: I definitely think advocacy skills are something that benefit everybody and then when it comes to hearing loss, there’s just more specific things that maybe another person wouldn’t have to learn, like advocating for your batteries.

 

A: Right.

 

J: Why is self– well you just kind of mentioned this but does anyone have anything else to add to this, like why is self advocacy so important to teach to children who have hearing loss?

 

A: I think it’s important because having a hearing loss is tough. And being able to advocate for myself and not always depending on someone was tough. You have to learn to become independent and confident with the person for who you are and then being able to take that confidence and say, “hey i didn’t hear that” even if you have to ask that person 3 times which is really difficult and it’s really embarrassing at times. I think self advocacy is so important is because every child uses it in one way or another it’s just a matter of how they use it.

 

L: And like Anna said earlier, when they’re in the mainstream, they’re by themselves. The classrooms are so big that I remember one of the teachers would say, “Frankie is so good at just– his battery’s out, I just see him get up, go to his backpack, change his batteries, he doesn’t even raise his hands or anything, he’s quiet.” So it’s something that — it’s instinct to them — I need to go and change my batteries. So it’s important.

 

T: Yeah I know you both have mentioned the batteries and your devices and letting someone know that you can’t hear something but how has self advocacy changed over the course of your life Anna? Was it different looking in college?

A: Yes definitely. Every stage is different. As a kid you advocate when it’s not working, the batteries are not working. But then if the implant or hearing aid itself then typically I would go to my mom or I would go to my teacher. But then when I got to high school and college that really became my responsibility– calling the companies to advocate for them for myself. So a lot more of that independence. And then also just being an adult with hearing loss, advocating in the public place, in the public workplace, and public spaces, is a lot different than in small settings, especially as a more shy person that really is going outside of the box to say “can you wear this mini mic?” or can you explain why you need different accommodations.

 

T: You’ve touched on some skills that might fall under the umbrella of self advocacy but is there anything that we haven’t touched on– oh wow! Anna has a whole printout! *laughs* is that the teacher–

 

A: It’s the curriculum, because I was like I’m not gonna remember all the stuff. A lot of the self-advocacy things that we teach here is just teaching the children who is hearing, who has a hearing loss, being able to tell their friends, tell their teachers, tell their families, “I have a hearing loss,” or “I wear implants,” or “I wear hearing aids because I have a hearing loss.” Being able to explain why. Also explaining to the kids that the mainstream is not full of kids with hearing loss. It’s hearing kids who are not going to be wearing devices. And just role playing situations where if a student says, “Why do you have a purple earmold,” our kids aren’t getting caught. Or just really showing that they can have ownership of the conversation, say “Oh that’s my earmold because I have a hearing loss, it helps me hear.” We teach parts of devices, we teach listening situations, what can you do if it’s hard to hear… repair strategies, we go to the mainstream once a month where we immerse the kids with typically hearing children and they do activities with them and learn about how noisy the mainstream is and start to practice those skills that we’re learning in the classroom.

 

J: I want to ask a question about self-advocacy skills in IEPs but before I do that, maybe we should define what an IEP is for listeners who don’t know it.  Does anybody want to do that or do you want me to do it?

 

T: I can do it…

 

J: Yeah, go for it.

 

*laughs*

 

T: So an IEP is something called an individualized education plan and the fastest way I’ve ever heard it described is as a blueprint for a child’s special education services. So when a child qualifies for special education services in the school, they’ll receive an IEP and it might list– it will list the kinds of services that they’ll have and the goals that those services will be targeting. So speech therapy might be on some of our kids’ IEPs, or hearing itinerant services, and then a goal on the IEP could be working on the child producing correct speech.

 

J: So within those goals, can self-advocacy be listed on there?

 

L: Yes, definitely. There’s a section where we talk about self-advocacy skills for Frankie. He is very shy and it’s something that he’s always been. So even when he was here at Child’s Voice, one of the main things that they would work on is looking at the speaker because Frankie tends to not look. He’s shy or if he’s not understanding, he just kind of looks down and doesn’t raise his hand. So it’s something that we’re constantly working at home. And we have that in his IEP.

 

T: Who on the IEP team would target them if they’re on the IEP? Or who targets them with Frankie or at Child’s Voice?

L: Well with Frankie, all his teachers have goals that they have to work on so all the teachers do have a spot in the IEP as well as the hearing itinerant.

 

A: That’s very similar to here at Child’s Voice. All of the teachers, speech-language pathologist, the audiologists, we all work together on making self-advocacy goals and then carrying out those goals tends to happen a lot in the classrooms, in the hallways, here at Child’s Voice.

 

T: I know that on Jessica and my end, we help write the IEPs when kids turn 3 and transition into the program here, but most– those IEPs don’t include self-advocacy goals. When do you guys add them in here?

 

A: Typically we start when they’re turning 3 or 4, depending on the student. So if the student is showing a lot of independence, then we’ll write them sooner. If they still need a lot of teacher assistance, we’ll wait.

 

J: Anna, what was your experience like with self-advocacy, do you remember any professionals or teachers working on those things with you?

A: Yeah, I had a lot of teachers who worked on that with me. Especially in elementary and junior high, I had a hearing itinerant who would push me outside of my comfort zone and really my self-advocacy goals were to go to my teachers and say, “No I don’t need to sit in the front but when I do ask for repetition or more assistance, I would like that assistance.” and at first I was very uncomfortable with going up to my teachers and explaining my hearing loss and saying what this thing said I needed in the classroom. But my hearing itinerant was excellent and by the time I got to high school I was able to tell all 9 of my teachers in a semester and explain everything and explain exactly what services I needed and what services I didn’t need.

 

J: I just got chills thinking about little Anna walking into all of her classes.

 

*laughs*

 

A: It wasn’t with the most confidence but it’s something you learn along the way but even now going to my professors, I still am like, “ugh I don’t wanna explain this again to you,” but I have to, otherwise they don’t always know or they don’t catch on.

 

J: Lucy how have you helped Frankie learn to advocate for himself and how has that changed over time?

L: So something that we started doing even while we were here at Child’s Voice but it’s gotten bigger at home now– because Frankie is so shy we’re constantly working on him looking at the speaker, so what I do at home a lot is I talk but I don’t make any sounds. So when– he has to read my lips and that way he’s constantly looking at me and if he starts doing that to me then he’ll start doing that to everyone else. So we just play a game and we might be at dinner and I say something and I’m like, “what did I say?” and he has to repeat it. And that’s something where I try to help him because he’s so shy and I need him to start looking at the speaker more and more.

 

J: That’s a cool strategy, I have not heard of that one before, that’s a fun game.

 

L: Everyone does it at home, not just me.

 

J: Does he get frustrated– do you do it– I’m just trying to envision– do you tell him that you’re gonna do that or do you start talking without–?

 

L: No

 

*laughs*

 

J: Does he get frustrated?

 

L: No because I want to make sure that he’s listening so if I just start saying it he looks at me funny like “hey I didn’t hear you” and then if I say it again he’s like “oh you’re doing that” so I don’t warn him I just do it.

 

*laughs*

 

J: that’s awesome.

 

T: That’s kinda fun.

 

A: That’s a great idea.

 

J: Have you started the process of having him talk to his teachers about his hearing loss, like he’s still pretty young? He’s in– what grade is he in now?

L: He’ll start in fourth grade. We haven’t done that yet and I think him being so shy I see it in the future might be something that we really have to work on because I don’t know how he would handle it.

 

J: Yeah.

 

L: He’ll probably be like, “Mom just make a note and I’ll just give it to my teachers.”

 

A: He did the self-advocacy book at the beginning of the year though.

 

L: Yes when he started, he did a book and he talked about his hearing loss and the parts of his hearing aid and how he uses his FM system. We even did a little trick with his classmates where he stepped outside and I’m like, “okay guys we’re gonna say a number and Frankie is gonna come in and he’s gonna say that number.” So a little boy raised his hand, he said the number, but of course they’re like he’s not gonna know, so when Frankie came in he said the number they’re like “What! How did he know,” and I’m like well that’s how the FM system works, whatever the teacher is saying, he hears it. It kind of like opened up the like, how can I say?

 

T: The dialogue maybe between his–

 

L: His friends and then they all knew that– they had the Roger pen so that was also another thing why we used that example. So whenever anyone was talking they knew that, “Oh I need the roger pen” because I need Frankie to hear me so… it was a way for everyone to understand how it worked and why they needed it at the table. But with adults I feel like sorry–

 

T: no, go on!

 

L: It’s harder for him. With kids his age, he’s fine telling them what he has and why he has it. But when it’s an adult, he’s like– he shuts down.

 

L: When we moved in to Romeoville, all the little boys around were like, “What is that, what is that?” and they’re like, “oh it’s my hearing aid, it helps me hear,” and he was perfectly fine telling them he just like–ugh…

 

T: I feel like at the elementary age, at least I can imagine, that the kids are more accepting than maybe later on. Though it feels like the world is becoming more — *laughs*– young people in the world are becoming more accepting.

 

L: Yes, parents are teaching their children that not every– like– not everything is normal. If this is our normal– but their normal is that way you know?

J: Speaking of parents… what can parents do at home to encourage self-advocacy skill development?

A: I mean, kinda like what we talked about before. Encouraging their children to change their batteries on their own, make sure their devices are working, and like Lucy creating situations and then working on their child self-advocating for themselves within their home. And then moving beyond the home to the park or to smaller settings, family parties, and then to school and beyond.

 

L: And it could be little things, like when we go out to eat, I always tell them, “Okay you have to tell the waitress what you want.” And again Frankie is so shy, he tends to speak very soft so they don’t hear him and I’m like, “You have to speak up,” so he does it all on his own and sometimes he has to do it two times but it’s like, if you want to just say it once you need to speak up louder so we do that also when we go out to eat.

 

J: I feel like it’s similar to a lot of skills that come up in childhood development that parents do things for their kids for so long and then eventually the expectation is that the kid start doing it so just thinking about what parents are doing for their kids whether it’s changing batteries or making sure that everything is working or asking if they can hear and kind of shifting some of those responsibilities over but being mindful about it. Because it can be easy to just go through your day and change the batteries yourself…?

T: Yeah and I feel like it’s important too to be mindful of how much support your kid needs at a given time. So even the example of Frankie going to his teachers and maybe verbally telling them about his hearing loss might be too much at first so having the paper be the first step and then maybe the next school year he can practice like maybe he could write the sheet of paper on his own and then the year after that maybe he’ll be ready to just come up and tell them. I just think of self-advocacy skills overall with kids and I can remember my stepdad took me to the bank when I was in 8th grade, I don’t know, I might have been older but it was traumatizing and he made me go up to the teller to deposit– I had NO idea what I was doing– to deposit a check and he didn’t understand why I was upset, I was like I look like an idiot. You have to provide some sort of support you can’t just throw your child into the deep end. I don’t know, it was really traumatizing to me. Like I didn’t know how to deposit a check.

 

*laughs*

 

T: Not that that’s related but just when you’re helping your kid take over responsibilities that are slowly going to become theirs as they become adults I do think it’s important to provide support.

 

J: Yeah, I remember having to make doctors’ appointments for the first time and being like, “You need to tell me what to say,” because I don’t know– and it’s not hard– you know? But it’s stressful when you’ve never done something like that and then when it becomes– when it’s with children with hearing loss, it’s such a part of their identity so the stakes are higher, you know? So it’s even harder I think.

 

T: That’s why I think it’s cool that Child’s Voice starts the skills so young too, because then there’s already been so much practice by the time that they really have to be independent with it, they’re ready.

 

L: And they start with the parents too so the parents know, I need to help my child to be able to do these things so we have to make these steps, so, because there’s other parents out there, they don’t know and they just throw them to the wolves and it’s just harder for them so if the parents are educated then the child will succeed better.

 

J: Can you guys think of any– both of you Anna for you and Lucy for Frankie– any moments of self-advocacy that you remember very clearly that you did something you hadn’t done before or he did something you know that he hadn’t done previously?

A: The most vivid self-advocacy skill that I had to do was, it kind of wasn’t traumatizing but it definitely was a very strong memory was when I was playing basketball and the referee kept telling me that I had to take off my implant because they were earrings. And he thought that since they were a piece of jewelry, you can’t wear jewelry in basketball, he kept telling me, he kept stopping the game and making a big fuss of this and I had to keep explaining and re-explaining, no it’s a cochlear implant, it helps  me hear, without it, I cannot play the game, I cannot understand what’s going on. So I learned a lot from that moment of just how even though the world is becoming more accepting there’s so few people that know about hearing loss and thinks that they need to advocate so just being out there to teach more of these people. Not only self-advocating for myself but also just teaching the world around me all about the services that we need.

 

J: Yeah. How old were you?

A: This was sophomore year of high school, so 16.

 

J: So that’s really on you, it’s not like you’re ten and your parents are right on the sideline and can rush over. Wow.

 

L: We recently went to Mexico and I was surprised that Frankie– someone was speaking to him and he only speaks English but in our home we speak both languages but with him we just started off speaking English because we just wanted him to talk and we’re like let’s just focus on English. So when we went to Mexico someone was talking to him and instead of him shutting down like he usually does, he was like, “Mom– what did they say?” I guess he understood a little bit of it that he was interested and he wanted to know exactly what they were saying so he asked me to translate or now I see that he turns to his brother like, “What did they say?” so he’s not just shutting down but he’s asking for help from someone to translate so that’s where I see him self-advocaca– self– what?

 

*laughs*

 

T: Self-advocating, it’s hard *laughs*

 

L: a little bit more when someone is speaking another language around him he will ask for help when before it was just, “Oh I don’t know what they’re talking about, let me just walk away.” And now he’s more engaged.

 

J: Those are really good things and it’s important for him to want to know what’s happening around whereas it can be so easy just to let things go but then how many things do you miss out on when you do that? THat’s a big step! That might be a good place to wrap up. Anna and Lucy thank you both so much for joining us today, we really appreciate it.

 

L: Thank you!

T: Listeners we would love to hear from you. Professionals, what are you doing to teach self advocacy skills to your students, to your families to teach their children self advocacy skills. Parents have you or your children’s teachers worked on self advocacy skills before with your child? What does that look like? Was there anything new today that was particularly interesting to you or anything or might’ve missed.

 

J: Be sure to let us know your thoughts on the topic today! Thank you for joining us for another episode of All Ears at Child’s Voice. Be sure to join us for our next episode. We will be talking with a speech language pathologist, Landon Lacey, about theory of mind.

 

T: I’m really looking forward to that one so definitely look out for our next episode. As a reminder we release episodes every other week on Wednesdays.

 

J: and you can find us on Twitter and Instagram. I’m @jessicabrockSLP and you can find Tatum @TatumFritzSLP.

 

T: You can also email us at podcast@childsvoice.org and find episode shownotes and archived episodes at Child’s Voice’s website childsvoice.org.

 

J: And if you’re interested in learning more about Child’s Voice, Child’s Voice is on facebook as well as twitter and instagram with the handle @childs_voice, no apostrophe.

 

T: Okay great, we’ll see you next time. Bye!

 

J: Bye.

 

A: Bye!

 

L: Bye!

J: And from our friends at Child’s Voice:

 

Child’s Voice kiddos: BYE! THANKS FOR LISTENING!