Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
45: Emilee Segura on Supporting Parents & Self-Advocacy
471 Plays11 months ago
Emilee Segura is an early interventionist supporting families in Utah. She is Deaf and uses both spoken language and ASL. Emilee discusses her own experiences self-advocating in school and ways we can support parents in EI and beyond!
Resources Mentioned:
Recommended
Transcript
Introduction to Todd Pod 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 Emily Segura about her experiences growing up with cochlear implants and her current role in early intervention. Thanks so much for being here, Emily.
00:00:25
Speaker
Thank you, I'm so excited to be here. Could you tell everyone about yourself and your role?
Emily's Early Intervention Journey
00:00:30
Speaker
Yes, so I was born profoundly deaf and my parents got started with early intervention and they had a deaf mentor come and teach them. They had an early intervention provider make sure that I was hitting on my language milestones. And then I got a cochlear implant when I was 18 months old, just on my right side, even though I am profoundly deaf in both years.
00:00:54
Speaker
they only did one at the time. So I'm just aided on my right side. And I did auditory verbal therapy for about five years. And then I graduated out of early intervention and grew up. And now I am an early intervention specialist myself. And I feel like it's so cool to have come full circle where my parents were involved in early intervention. And now I'm hoping
00:01:18
Speaker
families that are in the same boat as my parents and just being able to help them as a person with hearing loss myself. Yeah, I think it's so awesome that you can be the EI provider and the Deaf mentor in one. Yes. That's such an awesome combination for families to experience. Yes. A lot of families just have questions about, what is it like to be Deaf? How does this sound? How do you feel in this situation?
00:01:47
Speaker
So I feel that a lot of parents like to hear just that personal raw experience rather than just a professional. I mean, it's good to have both, but they love just the raw, how do you feel about this type thing?
00:02:00
Speaker
Yeah.
Discovering Emily's Instagram and Advocacy
00:02:01
Speaker
That's actually how I found you is because you share that kind of stuff on Instagram and one of my parents were like, do you follow this person on Instagram? And I was like, no, oh my God. And I like immediately followed because that's like exactly what you meant. That's what parents worry about a lot of times is that sort of stuff, like just not understanding their trials experiences. So I'm glad that you share it on Instagram because someone like me, who I can help with the language piece, but I can't help with the personal experience piece, I can steer them in the direction of someone who can share that experience.
00:02:30
Speaker
Well, thank you for sharing my page because yeah, I really do love just sharing my personal experience and I get lots of messages from parents just thanking me for helping them be able to see.
00:02:42
Speaker
what their child is experiencing as an adult that can express my feelings and all of that. So it's been really fun to share my journey over there. Yeah, absolutely.
Transitioning to Mainstream Education
00:02:52
Speaker
So a little bit of what I wanted to talk about today is kind of what would be helpful for TODs is kind of reflecting back on the school years and your experience in school and just any insights that
00:03:04
Speaker
you could share with teachers who are supporting kids with hearing loss in school, like what supports you found helpful, what supports maybe you felt like could have been helpful but weren't available at the time, just so that way we can apply that to our students now. Sounds good. So looking back, I just actually watched your Instagram stories or your reel the other day where you talked about how you went kind of like a hybrid situation and then you were mainstreamed for a while. So if we want to jump forward to the mainstreaming part,
00:03:32
Speaker
Can you tell me a little bit about your experience in the mainstream? I started mainstream around kindergarten part-time, but then it really transferred over to be full-time and second grade. My mom chose a charter school because
00:03:48
Speaker
The classroom sizes were smaller, so there wasn't as many kids in the classroom. And then there was also the teacher and then a teacher's aide. And so there were two adults in the room that I could go get support with if I needed. So we decided to go to the charter school and I thrived there. I want to say, I should have asked my mom, but I know I had a 504 at the beginning.
00:04:14
Speaker
But then I think over time I just didn't need that official 504, but I still had accommodations that I just would speak up for.
Self-Advocacy and Empowerment
00:04:26
Speaker
And so the 504 was helpful when I was in those younger years and I couldn't advocate for myself as well as I could when I got older.
00:04:35
Speaker
I feel like it's kind of a transition phase of, okay, I need someone else to tell the teacher she's deaf. She needs you to look at her when talking. She needs you to wear the microphone so she can hear you. She needs to be able to sit in the front.
00:04:51
Speaker
And then over time, I was just able to advocate what I needed. Did you always just feel comfortable doing that? Did someone help you like your mom or did you just feel like you were outgoing and you just were able to do it?
00:05:05
Speaker
It's been a learning process and I still to this day feel like there's things that I'm learning about self-advocacy. I feel like it's a lifelong journey and I feel like it changes. With the pandemic, I feel like I really had to shift on a lot of things that I wasn't.
00:05:22
Speaker
prepared for. That was for further education, my masters and stuff. But going back to elementary school being mainstreamed, I feel like my mom did a really good job teaching me how to do it by example. I would see her go in before the school year started and we would introduce
00:05:45
Speaker
she would introduce me to my teachers and she'd have me explain some things. And then just naturally as I got older, I wanted more of that role on me. And so I feel like it was just by example from my mom really advocating for me in the beginning that I was able to learn what I could do for myself.
00:06:03
Speaker
Yeah, and I feel like that's helpful to remember that like we can turn it over to the students probably younger than we expect, like especially even like a second third grader like really can do things on their own behalf, we might have to like you said give them an example or something but I feel like sometimes because we're there, and the parents aren't there.
00:06:22
Speaker
We help them longer than we need to, not that we need to, but we provide more support instead of helping them do it on their own. And I always think that's helpful to remember that even kids that are second, third grade a lot of times can be the one to go up to the teacher and tell them things. Absolutely.
Classroom Challenges and Support Systems
00:06:40
Speaker
I feel like my mom was really good at starting that introduction at those early ages, but turning it over to me to say, hey, can you tell her about you? And I could have the opportunity to say, I have a cochlear implant. It helps me here. Or I need you to wear this microphone. And so yeah, I agree that little kids, even starting second grade, can tell the teacher what they need and want. Yeah. Did you have any resistance to the microphone as you got older?
00:07:09
Speaker
Yes. I think it becomes more of that social fear of not fitting in, fear of being different, fear of all of that stuff. I feel like I didn't want to be any more different and that microphone made it harder. I feel like when I was younger, I had the personal FM system and I had this little microphone that sat on my desk that would come to my ear because the technology wasn't as advanced as it is now.
00:07:38
Speaker
But when I got older, I feel like they just put a microphone that was for everyone. And I think having that kind of helped me of like, this could be benefiting other people. It's not just for me. And so I kind of had to switch my mindset of maybe there's other people that can't hear or maybe there's other people who like the microphone and just not
00:08:00
Speaker
feeling the pressure that it's just because of me and so I appreciated the teachers who just always wore it and it was just part of part of their class and they even like would use that microphone for other such I'm thinking like in high school they I would see them also use the microphone when I wasn't in the class and so that helped a lot.
00:08:21
Speaker
Yeah, I've gotten a lot of feedback from classroom teachers that they like using the sound field mics because they don't have to like raise their voice. They don't have like that vocal strain. And it really helps with like, there's a lot of kids with auditory processing, diagnosed and undiagnosed out there and it helps them a ton. Like it's really just a helpful tool.
00:08:42
Speaker
for a lot of teachers so I feel like it's not a huge ask. And another thing that just while you were speaking reminded me something with my high schoolers that they found helpful is we have them like when they walk in with if they're using a personal mic, they just like put it on the teacher's desk and keep walking.
00:08:59
Speaker
Like it's not like a big handoff. Like it's not a big thing. It's just they walk in, drop it off, keep walking. And the teacher knows just to pick it up and put it on and start talking. So that way it just makes it a little more streamlined, a little less embarrassing. Not that there's anything to be embarrassed of, but I get it. In a middle school, high school, you don't want that. So.
College Experiences and Coping with Listening Fatigue
00:09:19
Speaker
Absolutely. That's a really good idea.
00:09:21
Speaker
And I feel like just meeting with those teachers beforehand is helpful. So it's not during the class when you have all those eyes on you and you're not explaining like, Hey, I need you to wear this because I can't hear, but you do that beforehand so that you can just, you know, slide it in and just.
00:09:37
Speaker
drop it on their desk and you don't have to say anything. I love that. I'm a big fan of always trying to do the in-service during the teacher prep days, if possible, before the other kids get there. It's not always possible because I can't get to everyone on the first day of school, but I really try because if you can get them ahead of time, it's like
00:09:58
Speaker
They're not as stressed. The other kids aren't there yet. Like ideally, like you said, the kid can actually come in and meet the teachers and introduce themselves. And it's just like a much smoother experience overall for everybody. And usually the teachers... Oh, sorry. Go ahead. Oh, I'm sorry. I was just going to say, I feel like too, when you do it at the beginning, you kind of set that expectation right at the beginning.
00:10:21
Speaker
And so it's just from in start, it's in place from the start. And it's not like they have to all of a sudden adapt and change. So when possible, just right at the beginning, setting up those expectations is really helpful. Yeah, absolutely. Jumping forward to like high school age, were there any accommodations you found particularly helpful, even like unofficial ones like a note taker or a transcriber or anything like that, that in high school when you were responsible for more of your academic work made a big difference for you?
00:10:51
Speaker
I feel like a note taker might have been helpful. I didn't have one. I liked taking my own notes. I just kind of unofficially would make a friend and they knew that if I needed any notes or anything, I could ask them. But I feel like I was really good at making friends that would help me in those cases. But I feel like if you just have a note taker, that might just be easier.
00:11:17
Speaker
I really hated the assignments where we had to watch a movie and like fill in the blanks. That was like my worst year in class for those days. And we had those types of homework or whatever assignments. And I feel like it was because a lot of those older videos that they were playing didn't have closed captions. And so that was one that always if there were closed captions, I would always ask them to turn them on. But the hard part was
00:11:45
Speaker
They always, they didn't remember. And so I would have to vocally raise my hand and say, Hey, I need you to turn on those captions. And that was so hard for me. There were times that I didn't do it because I was like, this is too embarrassing. And then I would just.
00:11:59
Speaker
you know, make a friend and be like, hey, I can't share them. Can I fill in my work seat? Or I would go in after class and be like, I couldn't understand the movie. Like, can I have more time? Can I just skip this assignment? And a lot of the teachers were really understanding, but I don't know if it's different now, but there's more technology available to provide close captioning stuff. But that was one thing that was really hard when I was in high school.
00:12:23
Speaker
Yeah, two things. One, I feel like the making a friend suggestion is actually highly underrated because that is a lot of times what the kids want to do. They would much prefer asking a friend for help than raising their hand in class to ask a teacher to turn captions on. And I know officially they're supposed to use the captions and it's in their IEP or it's in their 504 and they're supposed to use the captions, but just
00:12:48
Speaker
helping the kids identify who's friends in your class? Who do you sit next to? If you needed help, who could you ask? Just kind of get this thinking in their brain as a compensatory strategy for life that if you have people around you who can help,
00:13:06
Speaker
do it. Like that's totally a valid compensatory strategy, even if it's not as like official as something as captioning. And I feel like sometimes we forget that, that we could do that. Yes. And I also feel like if I didn't have like, it wasn't like my best friend, like there were some classes where I wasn't with my like, best friends, but it was just in that class, who who's nice, right?
00:13:32
Speaker
It doesn't have to be my best, best friend. It's just someone that I know is nice and that understands that I need a little bit of help sometimes. Yeah, and I feel like everyone has those school friends. People that are in a lot of your classes that are like, you're nice to each other. You could do projects together, but you're not going to hang out after school. But you're totally fine to have some school friends who can help you, and that's totally normal and something that we can remind our high school students is an option.
00:14:02
Speaker
Second thing about the captions, I think it has gotten better just from what I can tell, like a lot more things come captioned. And I feel like, I don't know, personally, I'm very like, annoying to the teachers, like reminding them about captions, like, at least once a month, like, Hello, remember the me and the captions. Yes, because I know it's easy to forget in the moment. But I do think I also have some of the kids have accommodations where they're not responsible for work if there's no caption. So like you can put that
00:14:31
Speaker
in an IEP like they can't be held responsible for that if there's no captions and a transcript has to be provided if they're like so like one or the other so if they absolutely need that information then it needs to be provided in a written format.
00:14:46
Speaker
So between the two of those things, usually we can get it covered. I feel like a lot of like the documentary style stuff has captions. It's like the cartoony stuff that's like kind of rough sometimes like because there's you can't even lip read it or anything. Yes. But luckily, like now like brain pop, like all that kind of stuff is all captioned. So I feel like it's like automatically like you don't even have to click a button. It's just like
00:15:12
Speaker
the captions are there. That's even better. And sometimes I remind them like, Hey, like you should just put captions on for everybody because like, I watch TV with captions. Everything I watch has captions. I don't have a hearing loss. I just, I like to be able to read. I feel like I can understand them better. All of your students will benefit from captions. So why don't we just do captions all the time, all day, every day? Yes, please. One thing
00:15:36
Speaker
I had one bad experience with captions. The teacher was so good. She put them on beforehand. And then the movie was playing and one student said, the captions are annoying. Please turn them off. And she turned them off. And I was like.
00:15:52
Speaker
Hello, I'm the one who needs them, so don't fall into your students peer pressure of, oh, they don't like it, let's turn it off. No, you're annoying.
00:16:09
Speaker
The only thing I warn people about is that if you're doing YouTube, you just have to check that the captions are accurate because automatically generated captions are not always accurate. You just want to double check that there's not anything a little suspicious in those captions. If they're community generated, you might be able to fix them. That's just a little caveat to the caption thing. Yes, absolutely.
00:16:33
Speaker
Okay, perfect. Moving on to listening fatigue. I try to ask all of my guests who have any type of hearing loss about listening fatigue because I want to know like what it actually feels like and then like what actually works for you on recharging.
00:16:49
Speaker
Okay. Listening fatigue is real. It's hard listening through a cochlear implant. I get listening fatigue when I'm in those loud situations with a lot of
00:17:04
Speaker
with a lot of loud background noise. That's when I really get fatigued really quickly. For me, I feel like there's the physical fatigue where I just feel so tired and I want to go take a nap or I want to go to bed. But I also feel like there's that mental fatigue where I'm hearing something
00:17:25
Speaker
but i'm not processing it because my brain is just like checked out like i just so it's like it's something sound is coming in but just going out my brain like i just i'm not processing it understanding it so i might be hearing it like that doesn't that's not changing but the understanding the processing and understanding is where
00:17:45
Speaker
it is affected and so when i'm in those loud situations and i'm like just trying to understand i'm trying to hear and it's just i'm just not understanding that's when i know okay you're just tired get out of this situation if possible so i'll just try either i'll take off my cochlear implant like i'll turn it off just for a little bit
00:18:06
Speaker
Or like I'll go to the bathroom, take it off, just kind of get a short little break. Or like if I'm in a setting where I'm like, hey, I'm just done and I just want to go home, then I'll just leave earlier or whatever. Just go home and crash.
00:18:20
Speaker
makes sense. I feel like that reminds me the way you describe it of like if you're reading a book and you're getting tired and you read the same line over and over again. I have not lost my ability to read. I have no more energy to comprehend what this says anymore, so I think it's time to stop reading. Absolutely. I feel like I catch myself saying what? More
00:18:40
Speaker
often than normal, or even my husband can catch that too, where I'm like, what? I know I can understand what you're saying, but for some reason I can't understand, and it's because I'm just tired. I'm just tired of listening, so I'll switch to signing, or I'll be like, I'm done, and I'll just take off my cochlear implant, and then he's got to sign, and stuff like that. Yeah. Did you ever feel that way in school, or was it mostly for special events when it's super loud? No. School is hard.
00:19:09
Speaker
Elementary school, I don't really remember a whole lot. High school, I feel like I would come home and I was just trying to just like lay on the couch and just kind of rest for a little bit, but it wasn't like anything horrible. High school dances though, that was a whole thing where it was just really hard to hear people talking with loud music. That was so hard and I would just come home and honestly cry just sometimes. Just like that was so hard and that was not enjoyable and high school dances are supposed to be enjoyable.
00:19:39
Speaker
And then college, I feel like that's really where I felt a lot of the listening fatigue. And I think it was just because the classroom sizes were much larger. Even though I did have the transcribers accommodation in college, I just feel like you're and that the transcribers were helpful in when the professor was talking or there was just one question. But there's a lot of discussions I felt like in my classes. And so when I'm turning to a neighbor and everyone's turning to their neighbor and talking,
00:20:09
Speaker
And then my transcribers often didn't sit next to me, so they couldn't transcribe what the person was saying. Thankfully, again, I had my good friends in the class, and they would get that I'm like, I can't hear you. But I remember I just was always tired in college. I just would, in the middle of the day, would come back to my apartment and just crash and just take a nap. And my husband, when we were first dating, he'd had no idea about any deafness, anything. And he was like, why do you take so many naps? And I was like, because I'm tired.
00:20:37
Speaker
I am so tired. I have to listen a thousand times harder than you and I am exhausted. So I got a lot of listening for taking college for sure.
00:20:48
Speaker
That makes sense too because if it's like more challenging material like also like you're just like thinking a lot more like it makes sense that like your mental tiredness would increase because it's like maybe in high school you were challenged but not to the level you were challenged in college most likely so it's like just like academically harder listening why it's harder
00:21:08
Speaker
And I feel like it's good to keep that in mind for our kids who maybe high school is a challenge to begin with, if it's like already a big challenge or they're like an overachiever type who's like really pushing themselves no matter what, because I have a bunch of those kids too. And they're like,
00:21:24
Speaker
they really push themselves, they really want to succeed academically. And they're very bright, but you could tell it takes a lot of work. And it's just like, on top of the listening and all of like the critical thinking that they're doing in these like AP chemistry classes that I have to keep up with. I'm like, okay, like you might have to teach me that we have to review the notes on that one together. But okay. It's good to keep in mind that that's
00:21:50
Speaker
sometimes what it's like and that sometimes all you really need is a nap, a rest, take them off. If you can't do that during the middle of the day, you just take a quiet moment and then take a nap when you get home, I guess. For me, going to the bathroom, I don't know why, but that is my place to just recharge. I feel like for me, it doesn't take
00:22:13
Speaker
that long to just get my little break of just like, okay, you can go to the bathroom, I can take off a cochlear implant, and just for a couple minutes, I'm not talking with people, there's not people with me, I'm just alone in my thoughts, and then I can kind of, okay, let's go back out there, and then when I get home, then just crash. Yeah, I always tell teachers that sometimes a listening break can just be like a walk to the water fountain, a walk to the bathroom, just like, let them go for a couple minutes,
00:22:42
Speaker
We'll come back like, you know, like getting out of that situation, having time to just kind of decompress and then coming back. Absolutely. Yeah. Perfect.
Tips for Early Interventionists
00:22:51
Speaker
Okay. So switching gears a little bit away from like your school stuff, but switching to like your role as an early interventionist. I love to talk to other early interventionists because as I've mentioned before, I have a lot of EI on my case load too, and it's something I love talking about. Um, so do you have any like tips?
00:23:11
Speaker
for counseling families who are at the beginning of their journeys. People who are maybe just getting the diagnosis are just considering all of their language and modality options. From your perspective as a professional, what kind of tips do you have for professionals who are starting that counseling?
00:23:30
Speaker
I think giving the family's space to grief is so important because if they can't process their feelings, figure out what they're feeling, they're going to get stuck in there and they can't move forward and they can't retain that information and make those decisions if they're not
00:23:49
Speaker
letting themselves just feel and understand what they're feeling. And then once they, and I always say this, but grief is just, it's going to be a lifetime cycle. And so it's just helping them at the beginning understand what they're feeling and just sitting with them and saying, this is scary. This is hard. This is overwhelming. And then once they're like, yeah, thank you. Thank you for validating that this is,
00:24:19
Speaker
overwhelming than moving forward with just all the education and all of that information can come after that. But I think just letting them experience what they're feeling for just a little bit. But I also feel like sometimes families can get stuck
00:24:37
Speaker
Like they stay there too long where they're just stuck in their feelings and so it's a balance of letting them feel it but then helping them move through it and learn how to go through that cycle because or else they're just gonna get stuck in there and it's gonna be harder to just move forward.
00:24:55
Speaker
Yeah, I feel like one of the hardest things for me personally is walking that line of giving space and grace and conveying the urgency of the situation.
00:25:11
Speaker
We don't have to do anything right this second, but we should start doing something soon. And it doesn't matter what that something is, it's just we just need to move forward to make sure that this child has access to language one way or another. And if we need to start one way and then add another way later, that's also totally fine. Yes, but like we can't wait.
00:25:32
Speaker
six months a year because that's where we get a little dicey. And that's where I really, it's hard for me to walk the line sometimes with parents who I feel like need more space. They need more time. And I'm like, I need you to hold that and come with me because it's time to start moving, especially when the kids are later identified. And I'm like, I know this is brand new to you. I see you and I hear you and
00:26:00
Speaker
And we got to move forward with something because this child needs some access to language. And I feel like for me, that's one of the hardest parts is like providing that, that balance. Yes, it is a tricky one to navigate. I asked my parents what helped them move forward in their grief. And they said, just getting started.
00:26:21
Speaker
Like it might seem so overwhelming to make those decisions, but my parents said that once they started, okay, learning about this, learning, meeting different deaf people, asking them questions, seeing their life as an adult.
00:26:36
Speaker
And just moving forward, it helps them to keep moving forward and realize, okay, we're going to get through it. We're going to make these decisions and she's going to, she's going to, we're going to do sign. She's going to sign. Okay. We're going to get it cooked. And then just, it just keeps going just one step at a time. But if we never get that first step, then that's where you're just going to get stuck. And so it's, I feel like, I think that's such great advice from my parents of
00:27:01
Speaker
let's just let's get moving. And then everything will just start coming naturally, you'll get it and you will still have all those feelings but you're able to move forward. Yeah, and it's I'm glad that you brought up that it's very cyclical because sometimes like people will accept
00:27:19
Speaker
it like they'll accept the hearing loss they're on board and then all of a sudden transition to preschool happens and they just have a whole nother wave of feelings about the fact that now their child is going to go to school does it have to be a different school should it be their regular school like and it just like opens up this whole thing and sometimes I think that's where itinerant teachers
00:27:39
Speaker
get it like where they intercede with it because that now a lot of times for us we're coming from the school district perspective of things and obviously it's a team approach but you're all coming with different information now we're trying to explain to the parents like what accommodations are available and like what
00:28:00
Speaker
classrooms are available. And it's sometimes hard when sometimes the parents are resistant to help because they're afraid of their child being different, which I totally understand and is a valid feeling. And we want them to succeed. So we want to offer these accommodations or the parents are trying their best to advocate for everything, but are just a little bit off about what would be appropriate for their child. Because, you know, it's hard to patchwork this on your own. So I feel like that's kind of where we come in and we have to
00:28:29
Speaker
like guide them in the right direction. And I think it's so important to work with their early intervention providers because I feel like when I've seen families transition to preschool and I don't do a good job of you know doing that transition then they often are struggling because I've been with them for three years or a long time and so they're just like I'm their person and then they have to get to know other people and so
00:28:58
Speaker
I try like six months before the child turns three and it's going to go into preschool. You know, we start talking about options. We start talking about different what questions they have. What concerns do they have? Let's go take some tours of the schools. Let's meet some of those people. And I think that helps the parents a lot too when we help transition the services over.
00:29:17
Speaker
Yeah, definitely. I love on the EI side, being that transition person. I love doing that because I feel like I'm like, finally, I can just like, here's all the information. Like here's everything you need. Like I can tell you every single thing you need to know. And then you can go from there and like make your decision to advocate for what you want to advocate for. I think it's so much easier from the EI side to like provide that help.
00:29:39
Speaker
as opposed to sometimes I see I guess I've been on both sides of it. I've gotten them from the other side where I'm meeting them for the first time at the school and I'm like, okay, hello, let's figure out what this kid needs. And I don't know them and they don't know me and it's
00:29:56
Speaker
interesting to try to navigate that with parents who might be, like you said, going through another cycle of feeling very sensitive about their child's hearing loss all of a sudden, even though they've been doing great for the past three years.
00:30:11
Speaker
Yes. Also, can I say when we're giving that information, I think it's also important to give it to them in a paper written format. Absolutely. Because then they can hear what you've said and then they can go home and read everything and really process it. Because oftentimes, there's so much information and they can't remember everything. And so giving them that written, all the information written is so important too.
00:30:38
Speaker
Yeah and one thing I do with the EI on the EI side which is I think been very helpful for parents is I encourage them to write like a parent letter basically to the district explaining their child's hearing loss explaining their journey thus far because sometimes we end up in a situation where a child was
00:30:59
Speaker
referred at birth, got aided, got access to language, whatever, by three, they're doing beautifully. That's fantastic. And the school district looks at them and thinks, why does this child need services? They're doing phenomenally and the parents have to advocate for services because they're doing that well because they have a ton of support, but they need that support to continue.
00:31:20
Speaker
And then sometimes it's not that situation. Sometimes they really do need, the evaluations show they need support, but a specific type of support. So having the parents put their own words into writing, I can provide them a lot of literature to get them started on that. But, you know, just like their history, like what kind of accommodations are appropriate for hearing loss, educating the district a little bit. It's like one page. It sounds like a lot, but it's not.
00:31:43
Speaker
It's not that long. And then just like a little paragraph about like what their hopes and dreams for their child are. Like when they grow up, you know, and having that sometimes the districts don't read it. I would be so real with you. But having the parent organize their thoughts in that way, they feel so much more prepared when they sit in a meeting and they have already articulated everything. They can just refer to their letter. It just makes the process like so much smoother. So if you're supporting
00:32:12
Speaker
Parents on the EI side. I love doing that. I think that's so so so helpful. That's a really good idea. I love that too
00:32:18
Speaker
Yeah. And I have, I mean, I've had parents write these for years. So I have a bunch of them so I can show them examples and stuff. So it's nice. The more you do it, the more you do it, the easier it gets. Okay.
Bilingualism and Parental Concerns
00:32:29
Speaker
So one question I actually want to get your perspective on both as someone who coaches parents like about language modalities and as a person who uses like listening and spoken language and sign language. A question I get from TODs a lot or I see in like TOD Facebook groups a lot is sometimes they run into situations where
00:32:48
Speaker
Some language deprivation has occurred. It's already occurred. They're already school age and they want to talk to the parents about ASL. Do you have any advice or tips for approaching these conversations? I know it's a big question. No, it's a good question and we should be talking about it.
00:33:07
Speaker
because language deprivation is real. But I feel like if we just keep talking about the past, you know, like, man, like you should have learned ASL or else this wouldn't have happened or, you know, bringing those the shame and the guilt, that's not going to get anywhere. So I feel like approaching it with, OK, like this is how your child is doing currently. What can we do now to help this child move forward versus just focusing on the past, if that makes sense?
00:33:37
Speaker
And then with ASL, I think many parents are just overwhelmed of, I can't learn a whole new language. That's just too overwhelming. I don't have time. I'm working jobs. It's totally understandable. So I think when you're approaching ASL or them learning ASL, just figuring out
00:33:59
Speaker
what that means to them and how they can accomplish that and give them resources, give them apps, give them different college courses or different places in their community or give them some Instagram accounts to follow.
00:34:19
Speaker
the deaf people sign or just trying to give them a broad range of resources to help them learn and understand, okay, I can do this, that might be too overwhelming, but I can do this. And just helping them find one place to start and go from there, I think that would be helpful. Yeah. Do you have any specific apps that you recommend to people who are starting to learn?
00:34:44
Speaker
Recently, I've liked the Lingvano app. I've had several of my current EI families start that app and they really like it. They feel like they're able to just do a 10-minute lesson every night. It's just starting small, but once you start small, it's just going to snowball and they're just going to naturally start learning more over time. I think helping them realize that
00:35:11
Speaker
They just need to start in one small place, start with the Lingvano app, and then go from there. Yeah, I downloaded that just to try it. I just did the free trial because I wanted to try it out before I recommended it to people. And I really like it. It's like Duolingo, but for sign language. Yes.
00:35:28
Speaker
Yes, exactly. It makes little dings and it's like little stepping stones and whatever. It's very similar to Duolingo. I feel like a lot of people that's, like you said, a little more accessible. It is a paid app, but it's not as expensive as a course or anything like that. Right. It's a good, just a beginner app. You can do that free trial and then if you're like, okay, I just need a little bit more and then you can go from there and see if just
00:35:57
Speaker
I think just the important part is providing the family with resources because if you tell them like your child has language delay, like ASL would be beneficial. Like you need to learn a whole new language. That's where it's like overwhelming and it's like, I can't. But if we just break it down and say, OK, how are we going to do it? What's what? And also, so many parents learn differently. And so figuring out what they how they learn best and what they need is also important.
00:36:25
Speaker
I know the answer to this, but I want to hear how you would explain it to somebody else. What if they say something like, but I want them to talk?
00:36:34
Speaker
Like, I want them to speak. I don't want them to rely on sign language, because those are things that I have heard from parents. Yeah, absolutely. Yeah, absolutely. Two things. I would say, one, language builds on language. ASL is just like any other language. It's like if you are teaching your child Spanish, bilingual. There's so much research out there.
00:37:00
Speaker
that shows that bilingualism doesn't hurt the child's language. It just increases their language. So that's a big thing. And I think a lot of people don't understand that. The ASL is a true language and it will just, language builds on language and ASL will help their child learn English or spoken language
00:37:19
Speaker
if they have good access to sound and with their devices. There's so much that goes into it, but I would tell the parents that language built on language and ASL will not hinder spoken language. Yeah. Do you have a lot of families who are doing ASL or signed English or a SimCom situation? Do they start with one and move to the other? With your families, what have you been seeing? A lot of my families do both.
00:37:49
Speaker
spoken language and ASL. They start with the deaf mentor, they learn sign, and I feel like a lot of them SIMCOM in the beginning and then just naturally as they learn more language, they naturally just separate the two and they start doing just signing without the spoken component. So I encourage SIMCOM if it helps the parents have the confidence to
00:38:15
Speaker
actually sign with their child because I just, I see it again and again, parents as they learn more, they just naturally separate the two. Yeah. I feel like going like full voice off when you know like 10 words is very intimidating. It is, it is. And also with the whole family learning, sometimes their siblings and it can just be, they're not used to watching someone sign, they're used to hearing things. And so it's just, I feel like
00:38:42
Speaker
It helps a lot of families just income in the beginning when they're all just learning. And then again, it just naturally separates over time or.
00:38:51
Speaker
or the child then picks up spoken language really well and then they don't need ASL anymore. And then I also feel like those parents are like, oh, like I spent all this time learning ASL and now they don't even want it. And I try to remind them that ASL, even if they're not like expressively using it, it was still so beneficial to get that language foundation for the child that they were able to build off of that. Again, language builds on language. They were able to take that and
00:39:21
Speaker
go to spoken language and and then I feel like I mean for my situation I dropped sign. I expressively didn't sign. I just talked and it was because everyone around me talked like I just wanted to be like them but my parents still used ASL and my cochlear implant was off or if they could tell like we were at a restaurant and it was a loud environment and I was struggling to hear they would sign a little bit or they would simcom
00:39:47
Speaker
And so even though I wasn't expressively signing, I was still getting a benefit receptively. And then again, I'm so grateful that I had that strong foundation of ASL. So I always tell parents it's not a waste if their child doesn't expressively use ASL.
00:40:03
Speaker
I think that's a huge distinction that some people can use ASL or SimCom or just sign support purely for accessibility, just to receive information. Yes. Even if they have beautiful speech and they want to talk, great, good for them. But there are situations in life in which it's hard to hear for everybody, especially hard for them. And if they have access to sign language in some capacity, great. That's awesome. That's an amazing tool to give them. Yes.
00:40:32
Speaker
Yes. I really big about having a communication toolbox and fill it with languages, fill it with any type of resource, anything that the person can just say, hey, in this situation, I want to use ASL. In this situation, I want to use SimCom. In this case, I want to wear my hearing device. In this case, I don't want to. There's just having all those options available in this toolbox is so nice.
00:40:59
Speaker
Yeah, I think that's really powerful for people to remember, especially because like, like I'm
Individualized Family Support
00:41:04
Speaker
an avi ed, like I'm whistle certified. So like I obviously like I teach kids how to listen and speak because that's what I like specialize in. But that doesn't mean every single kid I work with is only going to do that. Like that's not
00:41:17
Speaker
That's just like, for me, I look at it more as like that's a skill set for a professional to have so that if you're teaching a kid to listen, you know what you're doing because it's a specialized skill set. It's not something every speech therapist can just pick up and do, nor every TOD can just pick up and do. It really takes some extra training. So I feel like I kind of look at it like that training was for me. Like that was that certification is for me so that I know how to do that appropriately. But that doesn't mean every family who uses
00:41:46
Speaker
listening in spoken language has to only use listening in spoken language. It's more of like, I love that. I just like, I get stressed about that sometimes because people like, I think when they, they just assume that I don't want people to sign because I'm a little certified, but I'm like, no, that was for me. Like I needed that. Like I, I started teaching and I was like, holy cow, I don't know what I'm doing. I need more help right now. So I got my certification because my whole caseload was, was little. So I was like, if I'm going to support these kids right in front of me,
00:42:16
Speaker
I might need to know how to do that. Well, yes. But it's definitely a more and situation. Yes, I feel like a lot of parents feel well, I don't know about a lot. I don't know. I feel like some parents think that all they need to do is get their child to cochlear implant and they're going to hear and talk. But it's it takes a lot. It's not the easy way out. It takes a lot of work to learn how to listen with the cochlear implant, how to hear and how to
00:42:45
Speaker
talk with the cochlear implant. It takes so much work. So when you have someone who specialized in that and say, hey, I'm going to help you listen and I'm going to help you learn how to hear these different sounds. That's so helpful. So helpful.
00:42:59
Speaker
And I think it's helpful for people, TOD is whoever's supporting families to look into if there's deaf mentor programs in your state, because it is like a state by state thing. Like New Jersey, we have it where I live, but only for early intervention. And then other states will have it, like can support school age children as well. But it's like a different
00:43:17
Speaker
And sometimes these programs are a little small or a little underfunded. You might have to do some digging to find the person who's in charge of it. But I do think that that's an amazing resource for people, especially if they have a speech therapist or a list list provider or someone who's working on the spoken language part. Obviously, I can support parents and sign too, but not as well as a deaf person can.
00:43:38
Speaker
like connecting that, those resources, those families to those resources. Even in the school years, sometimes like that's, they still need those connections. Yes. And it might have to be outside of like a state deaf mentor program, but you know, either through social media or through just like whatever resources are available in your state, like once you kind of poke around, you'll kind of see what's around.
00:44:02
Speaker
Absolutely. Absolutely. Perfect. Awesome. Is there anything else that you wanted to share with teachers that we haven't mentioned yet or any like resources or places they could reach you? I will just say I think one thing that's helped me is
00:44:19
Speaker
seeing having the viewpoint that all parents are doing their very best with their emotional capacity, mental capacity, their education. And once I meet them where they are, I feel like I make a lot of progress with the families because every family is so different. And when I just meet them where they are,
00:44:42
Speaker
I see a lot of change because every situation every family is so different and there's not one right way to do things and so when we we make it personal we get to them on their level that's when I see a lot of change and that's why I love this job why it's so fun because it's like a challenge of every situation and every child is so different and we're just brainstorming different ways of how can we help this child succeed the best that they can so
00:45:09
Speaker
Yes, definitely. I always say that too, that the one-on-one nature of it is my favorite part about this job because a lot of teachers don't have that special one-on-one connection with the family, with the child, whatever it is. It's so nice to be able to just focus on the one person in front of you and do whatever they need from you, you can do.
00:45:29
Speaker
So I agree. I love that. Okay, great.
Following Emily's Journey on Instagram
00:45:31
Speaker
So if people have questions or if they want to follow you, could you share where you are on the internet? Yes, you can find me on Instagram at Emily sakura and it's E M I L E E S E G U R A. Awesome. I will link that and also like the transcript. Anything else we talked about, I'll link it all in the show notes and at listen to top.com. Thank you so much for being here, Emily. This was such a great combo. Thank you.
00:45:56
Speaker
And I'll see everyone else next week. Bye. Bye.