Christina: [00:00:00] Welcome to the Taking the Lead podcast where we empower people to be unstoppable. I'm Christina Hoeppner with my co-host Leslie Hoskins and Timothy Kuo. Timothy, you are on a big trip right now. Tell us about it. While
Timothy: we're up here in Wisconsin visiting a puppy razors up here in Shell Lake, and we've been all over Shell Lake and Spooner Friday, I did a speech in front of second graders.
It was the toughest speech I've ever done, and I've done speeches in front of, uh, lions and other places. But man, them second graders, I was sweating bullets.
Leslie: Yeah.
Maya: Did you
Christina: get some crazy questions? Oh yeah.
Timothy: But uh, yeah, but there were some, a lot of good questions also, I remind them, what do you do when you see a service animal or a guide dog?
You, you don't pet, You don't ever touch them. And they were all just sucking me up like a sponge. And that's what made me nervous, . But I spoke in front of the dnr, uh, Saturday and then yesterday I spoke at their church and [00:01:00] it's been a great weekend. Glaciers having fun, and the puppy raisers are having a blast to revisit her.
That's awesome. So we're gonna make this an annual event every year. We're gonna come up here and spend four or five days
Leslie: with them, so it's great. I love, That's great. So you have to tell us though, you sent us a picture of a group of people and they were all wearing shirts that said glacier's number one fan.
Is that what they. Yeah. Or biggest. That was
Timothy: at the dnr. Oh my
Leslie: gosh. A fan club. The fan club. Glaciers fan club. That's what it.
Timothy: My wife started crying cuz she saw their shirts and it just says Glaciers fan club. And they all have a, a black lab on their shirt and it was like six or seven of 'em. It was so cute.
So they're following me on the podcast and on the Instagram. So I glacier's got her own Instagram, so they're following her there. So it is been a blast and people are crying up here. So it's, it is been a great.
Leslie: That is wonderful. All good tears
Christina: too, I hope. .
Leslie: Yes, it's all good tears. How's Glacier handling it?
Is her head just getting [00:02:00] bigger and bigger and bigger or She's doing okay. She's having a
Timothy: blast cuz they're training another dog. So the interactions and so she's having a, having a blast. She's going to, our old places that she did our same toys are here. So it's been absolutely, she's having a blast.
It's just been vacation for her, but reality hits tomorrow we go back home. So she's
Leslie: gotta start working. So did she really hard to do, immediately recognize the puppy razor, Like just went right for him or? Because it's been a few years. Yeah.
Timothy: Well, Mike met her outside and she started sniffing him. And she, he goes, Does she normally do this?
I said, No, she knows who you are. And then Tracy walked up and her tail was going 90 to nothing. So yes, she knew exactly who they were and, uh, it was great to see her reaction and give them that, Hey, you know, those two people are important in her life for that first year. And I like that she remembered them.
And so she remembers. . That
Leslie: is wonderful. I absolutely love [00:03:00] watching dogs like reunite with their people. Yeah, I can't remember. Who it was, Oh, I think it was Finley, one of our canine ambassadors, um, who lives with one of our volunteers and he does a lot of blindfold walks and stuff like this. But anyways, he had his dog Finley in for an event or something and we, we didn't even know it, but Kate, one of, um, our guide mobility instructors walked in and ly.
Bolted for her, ended up breaking her sunglasses, like knocked them off her face because she was just so excited to see her. And Kate was thrown off by it. . Yeah. But it was so funny. Um, and just you can see that love. I mean, it's been years and they hardly ever interact, but Finley knew instantly when she walked in.
Yeah.
Christina: It's awesome how dogs like know their people. It's,
Leslie: Yeah, I love that. Very cool. Well, I'm so glad that it's going well, Timothy. I think that's awesome that Glacier has a fan club and that hopefully you can go and visit once a year, uh, and maintain that relationship. Very cool. Well, we are so excited [00:04:00] for today's guests, a mother and daughter duo who are both a part of the leader dog, family as a client, and a puppy raiser.
Christina: Yes, the mother-daughter duo, Monica Maya live in Minneapolis, Minnesota. Maya, just Graduat College. In recently finished an internship for a disability nonprofit. She's legally blind and heart of hearing. She got her first leader dog in April of 2020. And Monica recently retired and took on puppy raising as a retirement project to give back to the organization that she saw give Maya so much independence and confidence.
She's currently raising her first leader dog, a black lab who is eight months old.
Timothy: Welcome to the podcast, Maya Monica Maya. Got first question to you is gonna be, can you tell us about your vision loss and your
hearing
Maya: loss? So I was born with hearing loss, so I was lucky enough to be born at the only hospital in the Twin Cities area where I was born at the time, that was doing a [00:05:00] newborn hearing screen, so my hearing loss was caught.
Right at birth. Um, and I was in hearing aids by four months old. Four months old. Four months old. Yeah. So I've grown up my whole life with hearing loss. It's always been a part of my life. I've always had really phenomenal death and heart of hearing teachers and audiologists who have helped me make things work, accommodate things, all that.
And then when I was 15, I found out that I also have retinitis pigmentosa and the combination of RP and hearing. Something called Usher syndrome. So that's the genetic disease I have. So that was obviously quite a bit of a shock. I didn't know I had any vision loss. I'd always struggled seeing in low light, but I thought it was normal.
Nobody can see in the dark, right? So it was definitely a big thing for our family to process and to figure out for a while. It was definitely something I didn't wanna talk about. It took me a while to accept it. Um, but yeah, so since [00:06:00] then I've sort of slowly been losing my. , um, peripheral vision. So I've had a bit more of a rapid vision loss than was originally anticipated by my doctors.
Usher syndrome is something, an RP in general, that it's very hard to predict the progression. So right now I have about 20 to 30 degrees of usable vision, depending on the lighting. That's so
Leslie: interesting. And I mean, kind of what luck that you were born into a hospital that was starting those hearing screenings.
I would've never thought of something like that. But you were able to catch it instantly and hearing aids at four months, I had no idea that was even possible. So what was that like for you, Monica, when you know, learning that information and then what kind of equipment or work did you have to do with those hearing aids?
We didn't
Monica: have family history of hearing loss, so it was surprising. And of course at that young age, we didn't know they could sort of like tell what level of hearing loss they thought she had as a baby, but [00:07:00] we had no indication of whether it would stay stable or get worse. You know, do we need to start with.
Sign language. Did we need to start speaking what, you know, where, where do we, what kind of hearing aids do we get? Do we get digital or analog or just, you know, 1,001 questions? And, and, and in the scheme of things, she was, you know, sort of, of the first. Kind of at the early end of people being identified with hearing loss so young.
So, um, there was one researcher who was doing some work on people a little bit older than it, but identified that early and she was doing some promising research on how well they did. So, you know, got her into, um, through our school district, early childhood special ed. With speech and audiologists from a, you know, from, from very even before you were one.
Oh, wow. And, um, and they were extremely helpful. And we started with sign language when she was a baby. We didn't know it, but we were just learning baby sign. And then she got very verbal [00:08:00] very quickly and, um, and the sign language kind of fell away because she, she really enjoyed talking and, you know, those hearing aids were helping her if we could keep them.
I was gonna
Leslie: say that seems difficult.
Christina: Yes. Especially a four month old.
Monica: Oh my goodness. We tried head fans, you know, we like everything we could think of and you know, Facebook wasn't a thing back then, so there weren't groups that you could easily find that were resources for parent groups and such. So, um, it was definitely a process and.
At age 15 to, to learn about the vision loss was, you know, sort of going through all those emotions again of like, what's her future gonna be like At that point, we knew she had done so well in school and was such a good self advocate and, you know, and she was gonna be fine, but it was, but it was still, you know, just such an unknown thing about how things were gonna go for her.
So, you know, scary as a parent with all those unknowns. .
Christina: Yeah. I can't even imagine. And Maya, so [00:09:00] you, um, at age 15 were diagnosed. Did you go through a grieving process or did you start getting services right away? Cuz you were still in school at that time?
Maya: Yeah, so at the time I, I didn't really notice my vision loss, so I was struggling to see at night, but I didn't really know what was normal and what was a result of rp.
So because I was able to move through the world kind of as a sighted person, I continued to do that. And I would say I was in the denial process of grief for a solid three. Maybe four .
Leslie: It was,
Maya: there was definitely a journey and I think because I didn't see, it was really funny. See my vision loss mm-hmm.
um, I, I could kind of ignore it. Um, so I think I connected with a teacher for the visually impaired. At my IEP meeting, maybe the year after I was diagnosed, but I [00:10:00] didn't feel like I needed any services, so we didn't really follow up with her. She was just kind of there to offer what she could help, but I didn't think I needed anything.
So I think we first really started connecting with services maybe my senior year of high school when we learned about state services for the blind. And the resources they can provide for people. So we connected with them and that's actually where I met the first deaf blind person I met. He was, um, A man who was my counselor, actually my VO rehab counselor who had Usher syndrome.
And I think meeting him and seeing somebody who was deaf blind living, this really incredible, fulfilling life was really impactful for me and allowed me to sort of go through that grief process and move forward with it and realize that I would be okay.
Timothy: Wow. Well, Maya, I'm sure there's people who got some questions.
How do you communicate to your. And what are some of the challenges you have?
Maya: [00:11:00] Yeah, so because I am oral, I use spoken English, so I do verbal and uh, visual commands with my guide dog. I think that's how everybody at Leader Dog does. Am I correct? Gotcha. So, yeah, I do both. Um, because I, you know, I'm able to use my voice.
I don't do much like ASL with my dog or things like that. So we mostly communicate through spoken English and love . Um, but yeah, so I speak with him. I tell him how cute he is. I tell him his commands all that, um, But we've definitely had our fair share of challenges too. You know, I think I was 20, 20 years old when I got him.
Um, and I think I didn't fully know the responsibility I was taking on, and so it was definitely a bit of an adjustment being like, I have this living creature at my side [00:12:00] at all times, and it's not just about me anymore, it's about his needs and what he wants and how I can make him feel comfortable. So it was definitely an adjustment, just kind of learning to be less selfish almost.
Um, and think about somebody else and something else. I think too, the adjustment of just being perceived in the world was really different. I used my cane. I would say maybe like 70% of the time before getting Paul, and I always was very insecure about how people perceived me with my cane. I felt like I was perceived very differently than I was when I didn't have my cane.
And then having, Paul was sort of Paul, my guy dog was sort of my leader. Dog was this whole new thing where I was kind of basically became visibly. Person with disabilities, but I don't quote look like a blind person, whatever that means. So I get a lot of comments about, Oh, are you training him? Or things like that.
So it was definitely, you [00:13:00] know, our own adjustment to working together, but also the adjustment of how I was perceived by society and learning how to handle people coming up to me, Oh my gosh, can I pet your dog? You know? We
Leslie: hear that all the time, right? When people are out traveling with a cane, clients always are saying, you know, people ignore or they're so scared to interact.
They kind of, you know, hold their breath and step to the side and hope that somebody doesn't, you know, brush them with their cane or touch them and then all of a sudden you're the same person, but you are now traveling with a guide dog and everybody wants to talk to you. Well, they wanna know your life story.
They wanna know about your dog and everything. And that's a pro and a con, right? That can be really overwhelming. I love your perspective of, you know, not only did you have to kind of figure this out and how you identified and were perceived, but you had to think about now how the public was viewing you.
Right. Now, all of a sudden they're asking you if you're the trainer, you don't look blind. Like all of that is so interesting. Yeah,
Maya: for sure. For sure. That's cool to hear. Other people have experienced that too, not just me.
Leslie: Yes. You're not alone in [00:14:00] that for. October is Blindness Awareness Month. And did you know only 10% of people who are blind or visually impaired travel independently with a guide dog or white cane?
That means that 90% of people require assistance or don't leave their home. That
Christina: is a staggering statistic. At Leader Dogs for the Blind, we focus on mobility skills such as waking training and guide dog training to empower people to travel independently. This training is offered completely free to clients in the US and Canada, including room, board, and airfare.
To learn more, head to leader your dog.org. So Maya. How did you find later, dog? Have you used services in your state? I guess how did you hear about later dog?
Maya: Yeah, so when I was officially diagnosed as being legally blind, which is sort of this arbitrary term that the government uses, but that's sort of the requirement for most Guide Dog schools.
I started thinking about it a little more seriously. [00:15:00] I've always loved dogs and I always sort of, in my grief process, I think it was like, Okay, when I go blind, I'll get a guide dog, so then it'll be okay. Um, and then as I was losing my vision faster, I was like, Okay, maybe this is gonna happen sooner. And I really started thinking about it and I started doing some research on different schools.
Um, I reached out to two schools that were recommended by my vo rehab counselor, and unfortunately they both denied me because of my hearing loss. Um, they weren't willing to work with me. Which was very frustrating. Um, I didn't really understand that, why they told me that, how that could happen. Um, so I started looking to see if there were any places that were more accepting of deaf blind people, and I found Leader Dog and the Deaf Blind specific program, which was super exciting.
And then I actually found out that Leader Dog is about a 30 minute drive from my b. Parents' house. Oh, forget . Yeah. This is just meant to be. And as I started [00:16:00] connecting with Leader Dog, um, I was talking to Anna a lot if she's still there. Um, and she was so wonderful, so helpful, talked me through everything, the application materials.
Um, and I kind of just knew very early on that that was the right program for me.
Leslie: Well, I'm so glad you found us in that roundabout way. Monica, I got a
Timothy: question for you. What made you decide to become a puppy? ,
Monica: Maya's guy. Dog's name is Paul. And when I saw him come into her life and how much he can help her just give her confidence moving around, we live in a busy part of Minneapolis and just seeing her navigate the streets with a lot of traffic and people and dogs and everything else around here, he just gave her a lot of confidence to, to navigate through those kinds of environments.
And, you know, someone did it for, for her, someone raised Paul. He was actually raised in a prison. And, um, you know, he's just such a wonderful addition to her life. And then we saw, we follow Leader Dog on social media and we saw in I think January that there was [00:17:00] a calling for people needing or for Leader Dog needing, um, puppy razors.
And I had recently retired, my husband's retired as well. And we said, What do you think? Can we, can we do this? And we thought, Well, you know this, this can be our
Leslie: retirement project. You're speaking to Christina's heart here, that social media Got you. Yes, . She's delighted over here. Well, and it was
Christina: so great that when you guys were there, On campus getting, uh, the puppy that I happened to be on campus that day too, and someone told me, and I got to run over and grab video of you guys.
And I remember when you guys, uh, FaceTimed Maya. Um, and that was cool to even just witness. Um, you know, you guys all kind of met the dog at the same time, so it super cool to see. And so now you have the puppy and the dog. Um, so what is it, what was that like first meeting like, Cause I'm sure maybe there were some nerves there of like, you know, is the puppy gonna distract the dog?
That sort of thing.
Maya: Um, what was that like?
Monica: So Maya was going to college in [00:18:00] Iowa, so we thought we kind of wanted her to be the first person that made the puppy. Yeah. Instead of one of our friends or family back here in Minneapolis. So we thought, okay, we'll do a little detour to Iowa on our drive back to Min.
So that she can meet the puppy. And um, so we met in the, uh, she brought Paul and then we met in the lobby of the hotel where we were gonna stay. She had Paul off harness and, um, but of course, Maya, the first thing she did is scoop up the puppy and wanted to . Um, and it was so sweet because Paul wasn't.
Jealous in any way. He was just super excited. They played immediately. Freddy, our puppy, was not afraid of this big 60 pound dog at all. Freddy's quite tenacious. So he, I think he thinks he's a 60 pound dog, even at 12 pounds. And, um, so it was, they just had a great first meeting and then we went over to.
Apartment and um, and Paul immediately went to his little toy basket and brought Freddy some toys. Oh, . He was just extremely, never [00:19:00] jealous. Just, just really happy to welcome Freddy into the whole environment. So, and they get a, they get along great, they play really, really well together. And so it's really nice for us to have Paul.
To hopefully have some good influence on Freddy Freddy's, like Freddy's a very so, and Paul is extremely calm. And you know, it's Paul's three and a half years old, so it's very different than an eight month old. But just Paul's personality's just steady and calm and um, just so reliable. So it's really great for us, for Freddy to have that environ
Leslie: have Paul around.
Well, that's so funny. You think about Maya, you were talking about the role model in your life in meeting that first vo rehab counselor. Deaf blind and seeing like how they were handling life and being incredibly independent and successful and now little Freddie has the same experience with Paul. It really is interesting.
It's kind of all full circle and what an ultimate way to really give back, you know, to leader dog. Monica, I think that's incredible. You [00:20:00] saw the impact that Paul was having on your daughter's life and wanted to hopefully do the same for somebody else. So you'll have to keep us up with Freddy so that we can follow along on his journey and see where it goes and, and what ultimately happens.
Monica: Absolutely be happy to.
Christina: Yeah. And you know, since you're a first time puppy, Razr, was there anything that surprised you initially about puppy raising that you weren't expecting?
Monica: Yeah, so I think that, um, we went into it a little naively. We're just, oh, puppy and we've raised a puppy before, but it had been many years since we had raised a puppy before.
And, um, and, and then Paul has been in our life for the, what, his year and a half. Year and a half. And, um, and, you know, three, three years old, very common. And, uh, so I think what surprised us is, um, is just that energy level of like, okay, Refocus. This is, you know, now we're, we're on a different, we're on a different path here.
And, uh, so it, [00:21:00] so that surprises it also just how smart they are, you know, how quickly they learn. And if you can be consistent, how quickly those things they learn can become such good habits and such good behavior. So, um, so I think those are kind of the things that surprise us
Leslie: the most. That's awesome.
I'm curious. What advice would either of you give to somebody? So, Maya, thinking about you being diagnosed, uh, with Ushers at age 15 and kind of realizing now that all of these things are happening, uh, what advice would you give to somebody at 15 who's kind of receiving that information?
Maya: Yeah, I think everyone's process is so different.
Um, I think the advice I guess I would give to myself almost, or you know, maybe people in a similar place to me, is to seek out other people with Usher syndrome sooner. I think I was fearful of doing that because I almost had this fear of seeing people and being like, Oh, that might [00:22:00] be me someday. But instead, when I started to see those people, it gave me hope about my future.
which I think I need it sooner. So I think connecting with other people with Usher syndrome are, who are deaf blind. There are some really great organizations out there. Um, you know, and even like through Leader Dog, getting to connect with other blind people who may or may not have hearing loss been really impactful.
And just, you know, there's something about being around somebody who you don't have to explain that experience to. They just get it. It's really, really magical. .
Leslie: I love that we've been hearing that more and more like how important role models are or mentors or just people going through the same thing to build this sort of support network, whether that be family, friends, but also just outside sources.
I think that's wonderful. Monica, what about you? So at, you know, birth, she was diagnosed with a hearing loss and then kind of all of these other things that happened. What any advice for, for moms or dads kind of going through. .
Monica: I think connecting with other parents was [00:23:00] really helpful to us. And like I said, when she was born it was harder cuz we didn't have social media.
Mm-hmm. , I mean, we didn't have connections like we do now. And um, and. As Maya mentioned, there's some different organizations specific to Usher syndrome and we're involved with those organizations. There's a nearly conference that we've been to where we've been able to meet, um, other families and parents and I mean, and now that.
She's, you know, outta high school, you know for sure for younger families dealing with school systems. And so, so helpful for people to have, um, other parents that they can say, Okay, this is what my district is telling me, Is this normal? Is what can I ask? How can I advocate? What can I, what can I expect? So it's a little bit different now, you know that now that you're a little bit older, but we can be that resource.
Some people to the extent, I mean, you were a little bit older when you were diagnosed, but, um, so making those connections. And the other thing I was just gonna mention about [00:24:00] Maya making connections with people, she, her dog Paul, came as a home delivery with the trainer. So you didn't get that experience of meeting other clients in that setting where you could kind of go through it with some other people who were experiencing it at the same time.
So that. Was maybe a little bit of a disadvantage, but there were other advantages, of course, to having the home delivery for sure. That worked out really well. But, um, that would've been a good experience too, to have done that training in person on campus and, and go, you know, have somebody to go through it emotionally with as well.
Leslie: Absolutely. That is definitely like one of those pro cons, weighing out how you wanna receive your guide dog training. There's definitely pros and cons to both avenues, whether it be on campus training or or in home. Just a reminder too, all of these services are completely free at Leader Dogs for the Blind.
I think sometimes we assume people know that and um, our longtime listeners, I'm sure do, but anybody who's just joining all of these services at Leader Dogs for the Blind are completely free, including room, board and airfare. Um, [00:25:00] and we're really lucky to be able to provide these. And we're so fortunate that we have our Deaf blind team.
As you had mentioned, you know, you were denied by a couple other Guide dog organizations, and I'll say each Guide dog organization has their, you know, really core strengths that they have. And it's, it's a very unique process, but I am so glad that you ended up in the Leader Dog Family two are absolutely incredible in doing amazing things.
Maya: Thank you. Yeah. I'm so happy we found Leader Dog. It's, everyone's been incredible, so supportive. So phenomenal. And like you said, just the services that you provide for us, it can be really transformative for so many people's lives and we're so grateful for that.
Christina: Yes. Well, thank you guys so much for joining us today too.
Timothy: Yeah, thank you guys for being here today. It's very interesting. Thank you.
Leslie: And thank you to our listeners for listening to the Taking the Lead podcast. I'm Leslie Hoskins with host Timothy Kuno and Christina Hoe. We hope you enjoyed learning about Maya and Monica's experience. Please join us next [00:26:00] week as we continue to dive into the world of.
Christina: Yes. And if you'd like to learn more about applying to our free services at Leader Dog, you can head to leader dog.org or call us at (888) 777-5332. And don't forget, you can reach us at taking the lead@leaderdog.org with any questions or ideas. And if you like today's podcast, make sure to hit subscribe and check us out wherever Podcast Stream.