Taking the Lead | Replay of Trip on the Elephant

We are taking you back to one of our favorite episodes before airing season 5. In this episode, we talk about what it’s like as a parent whose children are going through vision loss. 

What is Taking the Lead ?

Leader Dogs for the Blind empowers people who are blind or visually impaired with the tools for safe and independent daily travel. Our goal is to educate, advocate, and share real life experiences of those with blindness. Come learn, laugh, and grow with us.

Intro-Christina: Hey everyone it’s Christina and Leslie, we are so excited to be resharing this episode of the Taking the Lead podcast.
Leslie: If you are new here we are taking a small break and replaying some of our favorite episodes until we are back with new episodes in late summer! Enjoy!

Christina: [00:00:00] Welcome to the taking the lead podcast, where we empower people to be unstoppable. I'm Christina Hapner with my cohost, Leslie Haskins in Timothy Cuneo. So there's been a lot of talk about our logo lately and everyone at bleeder on campus has been asking what dog each of us represents on our logo. Now I straight up told.
Without a doubt. I ha I'm the golden
Leslie: retriever. I, I would 100% agree that Eagle are the golden retriever and that's it. That's not a bad thing. Yeah. I don't
Christina: know. Does it just mean I have a golden personality?
Leslie: Yes, let's go. That's great. Timothy, what are your thoughts? Who do you think you are? Who's which dog represents you?
Of
Timothy: course, I've gotta be the lab. Cause you know, glacier
Christina: guide dog at the lab.
Leslie: Well, that depends
Christina: because what people were saying is that you're the [00:01:00] German shepherd. Yes,
Leslie: you're the shepherd. You're the star of the show. You're the one everybody wants to hear about. So we're hearing that, uh, Christina's the golden, which are very out, you know, affectionate, bubbly, um, a little more, uh, attention.
See,
and then Timothy,
Timothy: and they're a little bit more high maintenance than the lab
Christina: is. I am not high
Leslie: maintenance, which then I just, I guess I fall into level lab category. Cause I'm the last one standing here, but, uh, mostly as loyal. Like I am I'm loyal folk. I also like treats, so I get it.
Christina: That's how we get her into the studio.
Yeah,
Timothy: exactly. And you know that the edge, the German shepherds and the metal. So guests, the angels in the middle
Leslie: Timothy, I [00:02:00] don't
Christina: think you're just the star. Okay. That's why
Leslie: you're in the middle. The middle is the star of the show. Yeah. Yeah. Although they do say that shepherds are sometimes whiny or protective.
Christina: That's true. You say it's horrible. It's terrible.
Leslie: Well, we have found this conversation. And one that I don't think any of us really thought about when creating the logo. Um, but it has come up several times recently of people stopping us in the hallways and saying like, so who, who represents who, which dog are you?
And we just crack up laughing cause that, you know, we didn't think of that. So yeah.
Christina: I never knew that I multiple people would tell me I'm the
Leslie: golden there. People are adamant that you're a golden. It is. The strong opinions.
So we'll have to ask our listeners. So if you guys have any ideas of who you think represents which dog, uh, let us know either [00:03:00] email us or post on Facebook or something like that. Cause we're finding this debate very, very interesting. Yes.
Christina: Lots of.
Leslie: But today we are so excited because we are welcoming Kayla and Zach Penn zone back to the podcast.
I can't believe we convinced them to join us again. And this time we are having their mom Janine join us to add in her perspective as a parent and a soon to be professional in the field of blinding. Yeah, we learned about
Christina: Zack and season one. And if you haven't listened to that episode, go back and listen to the one titled don't be as they are siblings that both have a leader dogs and their mom, Janine is currently in school for orientation and mobility, or also known as white cane training.
Timothy: Well, I'm excited to have all three of you here, Zach and Kaylin lack. They've been on the earlier podcast and we learned about their events up to their diagnosis. So Jenny right off the bat, When, when did you first notice their limitations
Janine: on their eyes site? Well, thank you for having me. Um, I guess it's kinda [00:04:00] two-fold with the kids.
Um, you know, Zach, when he was toddler age, he, um, I think he did re you guys talked about this last time, a little bit. He kept running into things with his bicycle, his tricycle and head on things. This is what I kept telling the doctors. I'm like, he just misses like the, he hits a part of the bumper of the car or when he's putting his bike in the garage.
Part of the garage door. It was never like head on right into it because that's what everybody kept saying. He's like, oh, he's just a toddler experiencing, you know, his boundaries and that. And I'm like, but it's just a little bit, Amy, didn't get, ain't got glasses, things got better for him. You know, teachers at school.
He never wanted to use lines on the paper. He, um, you know, sloppy handwriting. Boy things. That's what I was told boys.
So I, you know, [00:05:00] I kind of let things go. I know he, you know, avid and boy Scouts, you know, he, my, my dad was the scout master, so he would go on trips long before he was even allowed to be in scouting. And, um, you know, sometimes he'd tell me about that. How he has to have the biggest flashlight there or, um, you know, he never wanted to walk by himself at night.
Never really thought much about it, but all these little things were important that we kind of talked up as childhood or the personality of the child. We Kayla, on the other hand, we all know. She walked into the parking meter.
That was my, actually, that was the point where I said in life, there is something wrong. Um, and somebody has to help me because, um, Kayla was very clingy. Um, she stopped doing [00:06:00] things at night unless I was there. She didn't want to go eat. You know, even for our family members back yards to walk out into the backyard, or if she had to go in and use the bathroom just to walk that little bit, she never, ever wanted to do it was always like somebody has to come with me.
And at the time we were, I w we were going through a divorce and a lot of people professionals kept telling them. It was because of this. Um, she just wanted to be close or we're in our pre-teen or teenage years. And that's what you're going through. This didn't just one day, go to the doctor and say, this is what they have.
This has been years of bringing small things to the doctor and them having some other rational explanation. So then I'd be like, okay, well then maybe I need. Step back and let them be and discover who they are. Um, but really like the fights that we would have in the house over. And this is any parent can [00:07:00] relate to this mom.
There's no, catch-up in the refrigerator. Yes, it is.
How could you not see that in there? Like those were things like in the cupboard, they couldn't find things. They'd be standing there. Like, to me, I'm thinking they're looking at it. When, in reality, I didn't know. They
Leslie: couldn't see it. Well, I am laughing at that because as a parent, I'm thinking of my two small children doing all those exact same things, like, you know, running into things with their shoulders or not being able to find things.
Uh, the one that really stuck out to me, uh, that said not wanting to write on the lines and school. I think that's really interesting, but yeah, you were repeatedly told it's because you know, it's boy things, it's just their kids. The cleanest. That's so interesting. And so now looking back, you're probably like, oh, well, yeah, this does make a little bit more sense, but of course, how would you know, that's crazy to me.
So did you find like once you finally got in there and there was a diagnosis, like a little bit of [00:08:00] relief, I
Janine: was going to say that I didn't want anybody to think, you know, I'm crazy, but it was just like, I can take a breath and be like, oh, thank goodness. There is something wrong. And then all of a sudden, after you say that, Oh, my gosh, there's something wrong.
And as a parent, I kind of went through this whole thing that I can't believe I didn't do something sooner or, um, I've let them down because I didn't get this diagnosis early enough to get them the help that they needed. So I kind of went through this parent mother process of, um, that the children didn't even experience.
It was me like, oh my God. Look at all these things I let go when I could have made a difference earlier in the week. Really, it doesn't make a difference now. Yeah.
Christina: Janine, um, so I haven't talked about this personally on the podcast before, but when I was 19, I was diagnosed with rheumatoid arthritis, which is an autoimmune and I was losing [00:09:00] my mobility.
And so my mom I'm sure can really relate to what you were going through because my mom felt helpless almost as well. Like. What I can't do anything to help my child. We don't know what's happening, why I can't move my arms, why I can barely walk. And so, um, I remember that. Fine now I've gotten treatment and all that, but, um, I remember her going through exactly what you're saying.
Um, and so I think a lot of parents can relate in that way when something's happening to their children, that they can't control. And I want to know, like, how did you, when you found out, how did you explain it to Kayla and Zach and then Katelyn, Zach, um, when your mom's done explaining it, how did you guys react
Janine: to that?
I don't think I really did the initial explaining. We were in the doctor's office. Um, we got sent to a, um, a retina specialist and the doctor handed me this paper and he was so distressed because he was taking, I'll [00:10:00] never forget it, his hands running it through his hair, looking at me. And he's like, I have to tell you that your children have retinitis pigmentosa.
And I heard nothing except for this leads to blindness. So I was like, oh my gosh, they're going blind. Like. Going to be blind, completely blind. And he had given us a handout and he did a brief little explanation about it. The kids were in the room that they could. I was kind of in shock in not really knowing.
I think we just read through the information he gave us and, and we talked about it at home. A lot, the kids can weigh in and see what they remember about that day. But.
Kayla: Personally, I feel like I, I really just remember hearing the words. Right. And then as soon as Nosa and RP as the abbreviation, um, at the time I was 14, so I didn't really know what all the words meant.
Um, from that perspective, the doctor was also like on the older side and we were pediatric at the, at the time. So he didn't really have a [00:11:00] great way to explain it to a pediatric patient. Um, so we didn't really know how to explain it to a child. Um, So more or less, it was me just learning. Like I took it upon myself to look up and read some of it and be proactive, um, and learn more about what it meant for me, what it meant for Zach, how it could different, what it meant for our family.
Um, so I'm sure they'll talk about it at some point, but we all went through a grieving process at some point, um, and learning and experiencing. I know personally for my grieving process, um, went into somewhat of a depressive episodes. Learning and experiencing it and understanding all of that. But then again, it was a day that I don't think any less will forget because one, it gave us peace of mind knowing, Hey, I'm not just a clumsy child.
I don't just walk into things. There's a reason behind it. And to your whole world just turned upside down from what you knew was a normal life is now not normal. So to both sides [00:12:00] of the coin that mom talks about, um, it's kind of how, how I understood it that day.
Leslie: Zach, any specific memories from that day?
Zak: Yeah, I was, you know, 16 with my learners permit and, you know, learning how to drive and almost 17 at that time. And it was a little bit after Kayla. So I do remember mom trying to explain it to me, like kinda, you know, did I, you know what this was in like a big thing was nitrogen. I remember. Specifically, like we shut all the lights and stuff off in my room.
And my mom's like, can you see anything that was like, oh yeah, I can see the shape or anything like that. You know, I could just see like an outline. I knew something was there and, you know, come to know, and I meet with the doctor with my twin and we got, we had the test on the same day and they said, Yeah, you have the same thing, you know, but your twin doesn't and I was 16, almost 17.
I thought this guys are quiet. And I, I went on with my life. Like that's probably where the don't be exact started. The [00:13:00] Irish is like, he doesn't always talk it about, I go hiking and camping and I do just fine in this world. So see ya have a great day. I
Leslie: left. Yeah. And it's so interesting. You know, we hear from so many clients that experience of like Giannini just said that my kids are going to go blind or you're losing vision.
You're going to go blind and then everything else just is a blur. Like nothing else matters. You don't hear anything else. Are constantly when we get an opportunity to educate, um, professionals in the eye fields, uh, to say, you know, makes sure that your patients have somebody with them who can kind of take in some of this information or w once you, you know, say that diagnosis reschedule another appointment, a follow-up appointment a week later to actually dive into what any of that means.
Because once that word blind is thrown out there, everything else stops. There's shock value. You can't understand anything that's saying, because all you've heard. Yeah. Blind. And that means they're going to lose the vision. And how are you going to go on with life? What are you going to do? So really trying to [00:14:00] educate everybody on one, how to tell that information, but also then provide some resources like, uh, you know, not just a pamphlet, but like here's some options.
Here's some cane training, here's something, uh, which we know all too often. Doesn't get passed along. Okay,
Timothy: Zach, you were both diagnosed with retinitis pigmentosa. So how did that impact your family
Kayla: relationships? Um, so for me personally, I don't think I told many people at first because I one didn't really understand what it meant.
So I really couldn't explain it to someone else. Um, but I, I think it just took awhile for us to understand as a family. And at that point you're in high school. Um, a lot of people in high school, I feel like they probably already knew because I was always clumsy no matter where I was or what I was doing.
Um, and again, it's high school. People don't really care. Like they're just kind of living their own lives, doing whatever fits them. Um, So people who are just kind of like, okay with it, it wasn't really like a huge life-changer for me at that age. But I [00:15:00] think once I hit like the driving age of 16 and kind of going through that part of high school was when it started to take a bigger impact.
All my friends were starting to drive and I couldn't end up in that kind of thing, but relationships from the family perspective, um, Amounts of air quotes. She always says, you can see the pencil across the room that you trip on the elephant getting there. And if that does not speak for me, I don't know what does, because I told her everything.
So for generally it took a lot of adjusting and not leaving things in certain places and making sure everyone's picking up their things, don't leave the dishwasher door open, like someone's going to trip over that. So it really took us a lot of being mindful and not leaving things out and just. Really just adapting in that way.
Um, but for friendships and other stuff like that, none of it really developed until we were a little bit older, um, and driving and, and all of that kind of stuff. So personally, everything was a little bit different because we were still at that naive age of 14. [00:16:00]
Leslie: I'm curious, any perspective, uh, Zach, from your, your twin sister and that out of the three of you, she wasn't diagnosed with that.
Has she shared any thoughts or feelings or did that impact the relationship between the two of you?
Janine: So I
Zak: definitely did, you know, at first, before we met with geneticists and really understood, you know, we just had a basic high school biology class and, um, cause she was a little white we're twins. Why doesn't it happen?
But Kayla and I always had, you know, other ailments or, you know, our food meeting stuff that were, people always thought Kaylin and I were the twins growing up. So it wasn't so much of a shock to my twin. Um, and yeah, I don't think it really impacted our relations. Shipped a whole lot being visually impaired by doing impact Kayla and I, a lot, it brought us a lot closer and I think just like my family as a whole, like we did tell most of our family very early on and our family as a whole really tried and be open-minded and [00:17:00] understood.
And, um, my pop and my mom's dad, my grandfather, he. And I didn't know this until years later until a scouting friend told me, and mom told me this not too long ago, but when we were first diagnosed, he went and put like, uh, she could fill it in and probably a little bit better, basically walked around night with like blinders on to see what it was like.
He would walk around our block cause he wants to make sure I was okay. And that he knew what we were going when we go camping, because I didn't change my life at all at the beginning. I just. Chugging along. And so it really did bring my family closer together. We all bonded, trying to understand and go
Leslie: through together.
That's amazing. That's really cool.
Janine: Can I interject one thing about Jenna, please? Didn't him. When she found out, I just have to say this sticks with me forever because she said to me, oh, great. I can't wait till the two of you are blind. Then I get to dress you alike. Like
to tell you what you're wearing. Two of you are going [00:18:00] to be dressed alike and kind of made fun of the. Light of the situation, but that is like a moment that sticks out from Jenna's perspective.
Leslie: She's like he played the perfect sister role. That's what sisters do. That's awesome. That is so funny. And I love that story about your pop.
Um, that's, that's really cool. And you can tell the love there and trying to understand so that making sure the experience was still going to be good for you. I think that's really special. Yeah. And so
Christina: Janine, you are going to school right now for orientation and mobility. I mean, I just have to ask what makes you want to go back to school
Janine: for that?
Oh, so really I think what happened was the pandemic number one, it is something that made me think a little differently, but really what the starting point was, Kayla got invited to go out to dinner in the. The one right before the pandemic. And it was the first time in my life that I actually [00:19:00] got to experience so much of her world or their world.
I shouldn't just say their world. Um, yes, I'm here as a parent, you volunteer, you get involved in things like this, but I was right there. I got to, you know, tour of leader, dog. I got to speak with everybody. I got to be at this dinner and overwhelming to do it in the dark and the morning. Thinking the kids are getting older.
All of a sudden, I don't feel there's enough programs or enough help out there, tons of help for younger. But what happens to these kids 18, 19, early twenties, or they kind of seem to be in limbo and everybody's helped my kids so much. My thought was, this is what I want to do. I want to find a school. I want to go back.
I want to learn how to do this. I want to give back and I still want to be able to help. Children, any way I can. Um, and, uh, and you know, thought was, I don't know where they're [00:20:00] going to end up in, in the world, but with this kind of job, it's kind of flexible. I can, you know, go somewhere. If they're all gonna live on the west coast or wherever I can still be there.
Cause I still struggle some days with trying to figure out how their whole life is going to play out, not being able to drive or. Things like that. So this was my thought process. And, and like I said, dinner in the dark really did and meeting everyone and that whole experience. And once COVID came along, I was able to really kind of just focus and figure out this is it.
I am, I'm going and give back.
Timothy: So Katelyn, Zack, how did you feel when you found out your mother wanted to go to school to learn?
Kayla: Orientation will be. Um, I think we were both really supportive of her. Um, I was actually able to be home when she was making the decision. So it was know a lot of conversations, a lot of different talks and it was really.
Um, so the resources that I have from Leah dog and other summer camps and other [00:21:00] resources I've had throughout my teenage years, I was able to put her in contact with a few different people to kind of talk through the programs, talk through the idea. Um, I believe she specifically talked to her Leslie at one point, talked through the program.
So we were just really excited, um, for her and supportive of it. Um, especially in the journey and the doing the work now.
Zak: And for me, I was very supportive. Um, mom and I actually had a lot of conversations. About her going back. I didn't know. At first, like it wasn't anything, certain she was, was fiddle with the.
Um, oh, wait a lot of conversations. I'm going to age her a little bit and she's probably going to be grumpy. She's been, uh, you know, the conversations work. Could she do this, you know, could she do college in the 21st century? Because she was, she graduated in 95. So it's a 26 year hiatus from education and being in the workforce and having three kids and living a life.
And, you know, I told her absolutely like, you know, you are adapted so much in your life from. And know, [00:22:00] becoming a single mom, three kids with ailments, like these are like going to school and learning how to use Microsoft and PowerPoint is trivial compared to that. So we had a lot of conversations like that, but I was very happy and excited for her.
You know, there's a lot you can do with ONM, just besides, you know, a leader, dog, and something that she really wants to do is VRT stuff. And I'm not really sure all what it entails, but I'm just so thrilled every day to hear her excited about this new passion in her life and wanting to start this new.
That's
Leslie: awesome. So, Janine, uh, Zachary just mentioned a VRT and it's not something that we have mentioned or talked about much on the podcast yet. Do you mind explaining that a little bit?
Janine: No. The, um, so VRT is vision rehab therapy, and that is, um, basically, uh, most places it's itinerary going out to the homes and showing people how they can live their daily life easily.
Basically whether by organization or, um, tasks, really medications, just little things, [00:23:00] um, by labeling or organizing how they can become more efficient in their home as their vision is declined. Yeah, we'd completely lost all of it. So I've just decided to add the VRC portion onto the program.
Leslie: Once you get in there, it's also exciting.
I get it all those daily living skills and those are huge. They're so impactful on people's lives. I think that's awesome. Um, so I'm curious now, uh, Janine, that you've been in your program for a while now, um, Are you correcting in a cane techniques at home or anything like that?
Janine: I did. So I actually won't have my cane techniques until July, no, June.
So I haven't is all been bookwork. So I haven't gotten, I will have eight weeks. I've just all cane coming in June. So
Timothy: yeah, [00:24:00] I'm glad I'm not them. I am so glad.
Zak: Hi, piggyback. The bookwork is very helpful. Cause it's stuff we missed in the early years of, you know, you know, learning different skill sets because she'll do something she'll face me cause I'm in Harrisburg and she's back home.
Um, she was like, you know, check this out with the, you can tell if someone's farsighted, nearsighted. Tips and tricks those books, the fundamentals that we didn't get. So it's really cool to get that information now to when.
Leslie: Absolutely. And part of going to a school to get your master's and orientation.
Mobility is actually being under a blindfold and learning all of these cane skills. So I'm sure Janine, you are going to get such a perspective, um, and even more empathy than you already have of actually having to put on the blindfold yourself and learn all these cane skills and crossing streets and doing all these things that your kids do all the time.
Janine: Yes, I am. I thought, you know, dinner in the dark was a pretty, eye-opener just doing those few things. And then, um, uh, [00:25:00] VRT class I had taken, we actually, at the end of the class had to go to a restaurant blindfolded order pay and all of that. So just to have that knowledge of, wow, these things are doable, but difficult.
So it kind of gives me hope to see, like, yes, there are so much resources out there that you can help a person with blindness. They just need to, um, ask for the help or find somewhere that they can get the help because you can leave a very independently. If you have all these right skills. So it's exciting.
Christina: Yes. That is amazing. I'm curious, how long do you go to school for this? For a master's degree. And where are you
Janine: at? Okay, so I'm at Salus university, which is Elkins park, Pennsylvania. It's a little bit outside of the city of Philadelphia. And, um, [00:26:00] the program is three, two and a half to three years. It's depending on.
Um, how you do your internship, if you can do it during classes or not. So that, that would be the extra semester. It is 500 hours of field service. So most people take that as an another semester. Instead of taking classes and doing the field service. So
Leslie: awesome. Well, I am so glad that you are enjoying it and even going to be adding on.
I think that's incredible. And I know already that you will be a huge contributor to the field of orientation, mobility, and just blindness and low vision in general, you're going to come and bring so much experience. I can imagine other parents having somebody to relate to is going to be incredibly helpful.
So I'm curious now, uh, you know, you've kind of, you went through the original diagnosis and you, you, you know, you're [00:27:00] seeing your kids still out there doing things, being successful, being completely independent. What are some words of advice you would tell another parent kind of just starting out or just receiving that diagnosis?
Janine: I think the biggest one is it's okay to feel what you're feeling. You don't have to have a F a feeling there's not a specific, oh, you should be grieving. Um, you, you should be worried. It's okay to be in that moment of, of what you have, um, and go with it. And that feeling may change, you know, two days from now.
And it's it's okay. You just need to know that there are people out there who can help, um, And keep searching for answers. If somebody is not helpful, um, we had to struggle a lot to find resources. It wasn't handed to us and say, here, here you go. We had to do research and keep moving forward. And, um, I think that's the best [00:28:00] advice it's okay.
Cause the situation could change the day and that feeling is something you guys have to work together at. You know, my fear and the kids fear. Most likely different. Most of the time, their fears are different than my fears, but I can say that to them. And, and of course my kids are older, so that also makes a difference.
But they could say to me, mom, but why are you afraid of, of, you know, us crossing the street? We have the dog now they just take us right across. It doesn't matter how busy it is. And here's me like you're going to cross a three lane highway, you know, from parent perspective. So I think that's it. I can't give much advice for young.
Kids, um, and, and talking with them, but just listen to your kids and what they need. They're Mo they're really gonna tell you the best for that now, we're you, it's the best. Let your kid tell you and your child, and then help them that way, whatever [00:29:00] direction they're trying to tell you to go. And it's not your direction because it's really their journey and you're just there to.
Along that journey.
Leslie: I love that because as we've heard from Kayla and Zach, their journeys have been different. They started out different. They're continuing to be different. They're unique individuals and have really taken this differently from the get-go. So I think that's incredible. Um, so I want to thank everybody.
All of you for joining. Um, also I have to ask really quick, Zach, did you like the title of the last podcast? That was, don't be a Zack. Yeah,
Zak: because Timothy and I had this deal where you're going to get some royalties. I was really expected for it to go through. So I thought it was
Janine: funny.
Leslie: We,
Christina: yeah, we had to, we were like, what do we title is.
Yeah, it has to be, don't tell him that I
Zak: loved it. I thought it was great.
Leslie: Well, I think that you can clearly clearly see the support that you all have for one another and the love, and we are so happily [00:30:00] that the whole Penn's own family is part of the leader, dog family. And thank you for joining us today and thank you so much to our listeners for listening to the, taking the lead podcast.
I'm Leslie Haskins with host Timothy Cuneo and Christina Hapner. We hope you enjoyed learning about the Penn zone. And it, please do join us next week as we continue to dive into the world of blindness. Yes. And
Christina: if you'd like to learn more about applying the leader dog, you can head to leader, dog.org or call us at [phone].
And don't forget, email us about what dog you think the are on our low. And taking the lead out leader, dog.org. And we'll also answer any questions you have as well. And if you also like today's podcast, make sure to hit subscribe and check us out wherever pod
Janine: history. .