TRANSCRIPT Ask an Adult with Albinism 11/10/25 >>Kaycee: I'm happy to introduce today's panelists to you. Kathi Garza, Marleena Barber, Jackie Hernandez, Nick Smith, and Donte Mickens. >>Kathi: Yay. Thank you, Kaycee. This is Kathi Garza and I work at Texas School for the Blind and Visually Impaired in the Outreach department and I was really excited when Kaycee reached out to me and said we had a request for an adults with albinism panel. So I collected my besties from NOAH and we're all here to chat with you today. As Kaycee said, please feel free to put any questions you have for our panelists in the chat and we would be happy to have them address those. I'm going to start off by letting everyone on the panel kind of introduce themselves. And just kind of share a little bit about what their adult life is like right now. What are they doing for work or vocation and what kind of talk a little bit about their families and just get to know some of the basic info. I'm going to start -- and I guess where you're from too. Because we're from all over. I'm in Austin, Texas but nobody else on the panel is. Marleena, you want to kick us off? >>Marleena: Hi, everyone. My name is Marleena Barber. I live in Anaheim, California, right around the corner from Disneyland, if you know where that is. I am in my early 40s and I am -- I have a few different things that I do. So, I'm the executive director for a very small nonprofit arts and disability organization. It's called Orange County Arts and Disability and we provide opportunities for artists with disabilities. We put on this county-wide arts and disabilities festival. I'm also a consultant for the Orange County Department of Education where I support the arts coordinator and do trainings on inclusion in the arts classroom for students with disabilities. And then my third thing is I am a performer and a vocalist. I'm a performing artist and singer. I guess there's a fourth thing. I'm a mom! I have two girls that are 11 and 14. My 14-year-old just started high school. She's a freshman in high school so that's been a big adjustment. But a really positive one. And I am married to my husband is fully sighted. He does not have any sort of vision impairment or anything. So, I think I pretty much covered the bases. >>Kathi: Thanks. Donte, you want to hop in? >>Donte: Hello, everyone. I'm Donte Mickens, originally from south Florida. I'm still residing in south Florida but I went to school in Florida State, go Knolls. We need a little help. I am married to my wife and I have a daughter, both of whom have albinism as well. My daughter is 5. As far as my paying gig, I work for a company where I am a financial systems manager. So lots of spreadsheets. Lots of accounting, that kind of thing. For the non-paying piece, I also serve as NOAH's board of director's chair. I also am the treasurer for my local Lighthouse for the Blind. I used to be the chair for about eight years or so. Took a semi step back from that. I also serve on the Florida rehabilitation council for the blind, amongst a couple other organizations that are in the disability advocacy space. Former para Olympian and what else? I guess that's about it. >>Kathi: Awesome, thank you. Yeah, that's it. Nothing else. Just all that. Jackie and then we'll have Nick. >>Jackie: Hi. My name is Jackie Hernandez. I am in Atlanta. I've lived here about ten years. No, we're going on like 13 years. And but I grew up in Florida in the Tampa Bay Area. And I'm in my late 30s and I'm a math teacher. That's my paying gig. I do, like, a dance fitness class on the side, just to keep my body moving. And I do some math tutoring on the side. And, what else are we doing here? I'm a mom of two kids. They both do not have albinism. My husband does not have albinism or any disability. And I think that covers it. Thanks. >>Kathi: All right. Nick. Nick is muted. Just one second. We need to get Nick unmuted. >>Nick: Can you hear me? >>Kathi: Yes. We need to get me muted for that. >>Nick: Perfect. Thank you. I'm Nick Smith. I'm 40. I'm not afraid to share the number. Currently I live outside of Columbus, Ohio, but originally from California. I'm a school psychologist, so I am the person that identifies students with disabilities and I have been a special education director. So the person responsible for all the tough decisions. I am married to Rebecca, my wife, who is also a person with albinism and also a TVI, and I believe she's on this call. And we just had our daughter, Abbey, who is just over 2 months old right now. >>Kathi: Awesome. Thanks, guys. I'm Kathi, Austin, Texas. I'm a TVI and a single mom of an 11-year-old. Oh, good grief. And I volunteer for NOAH. Actually, pretty much everyone on the call, on the panel is involved with NOAH in some capacity. And so that leads me to my next question. And I'm just wondering if you guys would be willing to share a little bit about your involvement with the albinism organization and how you got involved, when you got involved, and maybe we'll just kick it off early and say what it's meant to you to be involved with NOAH. So we can start with -- we're just going to bounce around. Jackie, then you can pop it to someone else. Cool? Awesome. Thanks. >>Jackie: Got it. So I started being involved with NOAH like '22-ish. I went to my first conference in 2022 and it's really changed my life. It's been great. I went so long without not having any community in this, with other people that are like me, and it's helped me a lot. It's given me so much confidence. And I can advocate for myself and I can just understand myself so much better. So many things make so much sense from my whole life. So, NOAH means a lot to me and I'm going to continue to be involved and volunteering. We've got a conference coming up. I volunteer on the parenting without pigment panel. What are we calling it? Connections. >>Kathi: You're on the task force now too. Which sounds like a really exciting job. I like that. I'm like, yeah, I'm on task force. Let's get it done. >>Jackie: And I do -- I'm going to do my dance fitness at the conference as well. And, yeah. But NOAH's been great. It's helped me so much. Oh, and then I will pick -- let's see. I'll go to Donte. >>Donte: All right. As I mentioned, I'm the current board chair for NOAH. I've been the board chair probably going back to maybe 2017-ish. 2018, somewhere in there. I've been on the board since 2013, so it's been a minute. So, you know, might be looking to do some different things, maybe volunteer in a different way with NOAH sometime in the near future. But I definitely enjoy it. You know, just based on Jackie's comments and others that I've heard, this is what makes it worth it. It's what makes this public service feel so worth it and it's just very fulfilling to kind of hear comments like that. So, appreciate that. What kind of brought me to NOAH? I went to a School for the Blind. I grew up around other people with albinism. My grandfather was a person with albinism as well. So, you know, I kind of had some proximity to it. However, in college, it was a conference that was going to be in Atlanta in 2004. And so I was in Tallahassee at the time so I bought a greyhound ticket, didn't have a lot of money, but I bought a Greyhound ticket, stayed in an off-site hotel. When I got there, it was kind of surprising because most of what has kept me coming back since 2004 really was the interaction with the parents and those first-time conference go-ers. And I felt like, wow, if there's anything that I can add to help out with the experience and helping, you know, folks feel some relief, you know, or feel like, hey, it's not as bad as my optometrist or ophthalmologist predicted, that kind of thing, for my child or for myself. Then that made it worth it. Really, it's just been providing an opportunity to kind of give back, you know, to the community that has kept me kind of coming back. But I love it. And now, you know, my wife is a person with albinism. My daughter is a person with albinism as well. So I'm invested in multiple angles beyond just my own personal fulfillment. >>Kathi: Great. >>Donte: I will pitch it to -- >>Kathi: Sorry. I thought you forgot. >>Donte: No, you're all good. >>Marleena: Okay. So one of the things I didn't mention in my intro is I actually grew up in Maine. I grew up in a really small town in southern Maine called Gorum. And I didn't make my way out to California until college. So I actually have a brother with albinism and he's the only other person I had ever known or interacted with with growing up. And did not really find NOAH until after -- let's see, after college I was working at the Braille Institute. I was a music director there. And there was another young lady that was working at, like, an eye care center. And there was a volunteer that kept going back and forth and kept saying, you look just like the receptionist at the eye care center. And I kept thinking, oh, she must have albinism. Anyway, they connected us so we had lunch together and this young woman ended up becoming a really, really good friend of mine. We had a lot in common, in addition to having albinism, and it was the first time I had ever met just someone my age. Like, another woman that liked to dress cute and wear makeup. Just it was just a really neat introduction into meeting someone other than my brother. And she was involved in NOAH and so she told me about the upcoming conference. This was 2008 and it was in Vegas. So I went to my first conference in 2008. And it was kind of an emotional experience for me to be around other people that just understand your life in a moment. Like, they just get it. You don't have to tell them anything, they just know what you've been through and they know that part of your life that not a lot of people can understand. And so then I was just hooked from there and wanted to be involved. Like, just as Donte said, you just want to give back because of what the community that NOAH had provided me. And so one of the things that I'm really proud of and happy that I've been able to do with NOAH is bring my musical gifts and skills. And we developed a choir. So now when we do the conference, we offer a choir program. And just being able to bring together people in song has been really cool. So we have our NOAH choir, and Kathi's in it. Nick, I'm going to start recruiting you guys. But, anyway, yeah. I love what NOAH does. And I'll pass it to Nick. >>Nick: All right. I want to say my first conference was around 2010, St. Louis. Anybody jump in and tell me what year that was. I was a part of NOAH way back before we had social media. Back before it was like the message boards back in the day. And I remember I had never seen my first real-life person with albinism until my first conference, actually. I remember being a kid and I remember being at theme parks and somebody saying there's another one. I literally have a vivid memory of trying to chase down a person through the theme park trying to find a person with albinism, but never found him. But going down the escalator in St. Louis and seeing a sea of people with white hair, this is a different feeling now. It's been fantastic. I met my wife through NOAH. I met some of my absolute best friends in the world through NOAH. I have colleagues and friends and contacts through NOAH all over the country and world. Makes it great when I do some traveling, I can pop into people's houses and say hi. But it's been fantastic. The connections, the network of peers and friends that you meet all over the world is great. And just like Donte said, I absolutely live for getting to talk to the kids and the teens and the first-time parents that are terrified of can my kid do this. And me being, oh my God, yes. I literally know doctors, lawyers, scientists, music teachers, and every possible profession, somebody with albinism has done it. I don't know how they do it but they have figured out ways. Just like everyone said, I love giving back to NOAH. It's given me so much. It's given me so many lifelong connections that I took over Marleena's job for this upcoming conference, handling the social programming stuff. Jackie, I'm super pumped to hear you're doing the class because we had your blocked for it. >>Kathi: We still have to go through proposals now. No spoiler alerts. I'm glad I'm not the only late comer to NOAH. I was a late comer to NOAH as well and I kind of grew up in a very small town with very limited supports and access. We knew about NOAH but I was always like, yeah, I don't need that. We didn't travel much growing up. And so I actually started working -- volunteering for NOAH on a more local level. So I would host fundraising events in the spring. And I wrote for Albinism Insight. My first NOAH event was 2013 when we had adults with albinism weekend in Portland. My first conference was in San Diego. And that's where I met you, Marleena. And so, yeah. So I didn't start, you know, attending NOAH events until then. Now I think I've been to every conference since then. And I think I only missed one adult weekend since then, and that's because I had just had a baby at home. It's fun and right now I'm volunteering on the parents without pigment task force with Jackie and Marleena. And I volunteer on the adults with albinism weekend planning committee. And then I'm volunteering for the conference. I am in the role of adult programming lead. So working on planning sessions for parents, caregivers, and adults with albinism. So it's really fun. You know, I feel like -- everybody on this call I think, everybody on the panel has heard me say this before. But I think for me it was -- I was very late coming into my identity as someone with a visual impairment. And I think that going to NOAH, you know, really solidified for me that, like, that I found a community. And I think it really helped me continue to develop my identity as an individual with albinism. The phrase I always use is it filled a place in my heart that I didn't even know was empty. I thought I was cool and everything was fine and I was good. I was in a career. I was a mom. All the things. I had done everything I was thinking about. You know, goals and things. And then this was, like, you know, mind blowing. NOAH magic is what they call it. Yeah, it was really a special thing. As Nick said, now we have friends across the country, you know, in all different states that can reach out to or hang out with or whatever. So, yeah. So we had a question come in from Libbey. She says I work virtually with families who have babies and toddlers with albinism through Georgia Pines. Is there one succinct? None of us are succinct. Maybe Donte can be. I can't be. Is there one succinct piece of guidance or advice that I can give my parents? I'm also a TVI in public schools. What's your one succinct piece of advice? >>Donte: I kick it off and say try it. Give the kids an opportunity to try it. Don't limit prematurely anything. Try it. See how it goes. You know, sports, recreation. Let them play. Let them do all the things. Try it. >>Nick: 100%, I second that. That was one thing that I wasn't thankful for as a kid but as an adult looking back, my parents just expected me to do everything a normal kid would do. Knowing that it was going to be hard and it was just expected to figure it out. And I cannot agree more with Donte that there is nothing we can't do. We might have to do it differently. We might have to figure out a way for us. But try everything. >>Marleena: I third it. That's the advice my mom received from a doctor early on. Which was really impressive at the time too. They said just treat your daughter like you would any other kid. And I think it's really important because I'm seeing a little bit lately, just with these younger generations, of a lot of coddling. Now, I know we had a lot of -- we have a lot more supports than what all of us probably had when we were younger. And I think those supports are really great and really important. But I think it's also important to let your child and the student kind of figure out what is going to work for them and not, like, trying to push things on them or say, oh, they need this. They need that when -- do you know what I'm saying, Kathi? Just being a little bit too overbearing and coddling and, like, oh, they can't be outside at all. They can't do this. >>Kathi: It's kind of like a safety net. It's more like I think having a permanent safety net than necessarily -- yeah. I see what you're saying. Which actually ties into what my advice would be. But, Jackie, you can go if you have something. >>Jackie: I would say I don't know what the balance is but there's some sort of balance of, like, obviously recognizing that children have albinism and they have limits, but finding out what their limits are. But then also, you know, let them try it. But there's a balance. Like, don't be in denial that they do have limits. Like, being at the beach all day could be -- I don't know. My experience was -- my limits were completely ignored or, like in denial. I just never really realized like, oh, everybody else was not suffering at the beach today? I don't know what the balance is. It's probably different for every child and every person. But there's some sort of balance of supporting them when they need the support and then also pushing them when they need to push. >>Kathi: Yeah. You know, I agree with that, Jackie, because I think that I was raised kind of like you and Nick and Nick said and just do everything everybody else is doing. To the point -- and I definitely 100% know this wasn't intentional. But to the point that it was hard for me to recognize when I was struggling because of my vision. Which didn't allow me to develop a lot of self-advocacy skills, because I felt like I couldn't -- I felt like if I talked about that, it was me making an excuse, right? And so I think there is a balance. But my advice would be to -- and I'm going to say the statement and then clarify it. Because I not succinct remember. Let them fail. And so I used to hear all the time the words fail forward, failing forward. I used to roll my eyes hard core at that because I was like, I don't want to do that. And I don't think anybody wants to think about the fact that they're failing or they're letting their kids fail. However, someone in my network recently said -- talked about how failure is feedback. And I really latched on to that. It's so true. When you think of failure as feedback, about whatever it is you're doing, it allows you to do what all of these teacher people are so good at. To reflect on what went wrong and think about how you can isolate that and what things you can do to make it better. And I think it's so important for our kids. And I would say kids with visual impairments in general, to have the opportunity to learn how to problem solve and learn how to learn from their mistakes. And if you never make my mistakes because you have a safety net, like Marleena was talking about, then you don't have the practice for that problem solving. So I think it's really important to find ways to let our kids learn about mistakes and failure and problem solving. Because I think those skills will transfer and are very important in the adult world. >>Kaycee: This is Kaycee. We had another question come in. I'm sorry, Donte. Go right ahead. >>Donte: I was going to say real quick, Kathi, just to echo what you were saying. Just a little bit, they learn the resilience piece, learning sports and getting involved in sports. You do have that, where you're going to lose sometimes. You need to know how to lose and learn how to grow from that. And similarly, whether they're going through mobility training or whether they're going through VR training, whatever it is. They're going to have challenges. So allowing them to build up that resilience to where that one defeat, one challenge damages their confidence, you don't want that to be the case. You want them to build up that self-esteem to where they can navigate ups and downs so that they're able to continue to progress forward. >>Kathi: It's going to get scandalous in here now. Are you guys ready? I am so excited about this, like right out of the hat. Right out of it. Are any of you Braille readers or dual media learners? Can you speak to that experience, if you are? Do you know what? Right after this, we're just going to keep the scandalous momentum going and we're going to talk about canes and driving. We're just going to hit all the big topics. Go ahead. Marleena. >>Marleena: I was introduced to Braille when I was in sixth, seventh grade, which was really the worst time to introduce that to me. Because here I am, you know, a tween/teen, not wanting to accept these differences about myself and then having to learn Braille, which was really hard at that age. So I think if we're introducing kids to Braille, it needs to be right from the beginning. Which I think is the normal way of doing it. For some reason, they just thought, oh, we'll just throw this at her and see if this will work. It didn't really stick with me because I think -- it's like learning another language, in a way. So you -- I just didn't have -- I just wasn't as fluent as I should be to be able to actually help me or make a difference. But I did do a lot of audiobooks, especially when I got into high school. With the Braille, I really did end of appreciate it because I ended up working for the Braille Institute, which is a school for blind and low vision students. And being the music teacher, I was able to use my Braille skills to Braille lyrics and write them birthday cards and things like that. It wasn't something I used in my education. >>Donte: This is Donte. I'll chime in. I did not learn Braille, was not exposed to Braille directly. Even though I went to a School for the Blind. Generally speaking, with albinism it tend to be pretty stable. And in the continuum of the visually impaired community, we tend to have the most functional vision -- usually. Not always. But I would say that anyone that has lower vision, albinism or not, right, then where you're into that 20/300, I think it's definitely appropriate for them to learn something that's going to help them. The earlier the better to introduce that but at least the school where I went, it was more like if you have the ability to read with adaptation, large print and that kind of thing, you maximized the use of your functional vision and then, you know, add on to the complication of the learning process in middle school/high school with introducing Braille. When in reality it's not really needed for someone with my acuity. Or better. And I'm not even on the end, you know, as far as better acuity. >>Kathi: Jackie. >>Jackie: I never learned Braille. I think my vision teacher showed it to me once and I was like -- are you giving that to me? I did not understand. Like, I knew I couldn't see but I didn't know why I had this vision teacher take me out of class. Why are you giving this to me? So that's my only experience with it. So, I don't know how to do Braille. >>Kathi: Nick. >>Nick: I'm kind of like Jackie. I never learned Braille. In fact, I remember the day I had a vision eval done and I want to say I was a sophomore -- no, a junior or senior in high school and I had to go to another school to have an FVE. What is the point of this? I'm almost done with school. Donte touched on a huge variety in terms of our visual acuity. Growing up I was kind of the only kid that had vision concerns and so I thought I had it as worse as you could have it without being totally blind. Until I went to NOAH and was able to read signs. I had some perspective and I did not have the worst vision possible. To echo Donte and Marleena's point, you know, it's a way of learning to communicate and so your brain has more neuroplasticity as a younger age. Not that you can't learn it later on in life but your brain is set up to do it better at a younger age. If that is a thing, based on your acuity or needs that you need to start learning Braille or to kickoff into the cane piece later, the earlier the better. Because you will start learning and, more importantly, using those skills more day-to-day. I will say like, for me, I live and die by this cheap $5 5X magnifier that I buy in cases from Amazon. That is how I access my world. It's because what works for me. I have learned how to use it. >>Kathi: Nick, what I'm hearing you say -- I know this is being recorded. What I'm hearing you say is you saw things a lot more clearly after your first NOAH conference. Basically the NOAH conference cured you? >>Nick: Totally. >>Kathi: Go to a NOAH conference. I am kidding. >>Marleena: It was eye opening. >>Kathi: Oh, no! It really magnified your knowledge about your condition. [Laughter] I also am not a Braille reader. What, Donte? >>Donte: I said it was enlightening. >>Kathi: No light! I learned how to read Braille when I was going through my graduate program to become a TVI. Which I never thought I would become. Like Jackie I was like, oh my God. What is this person doing here? Anyway, I read it visually and I still tend to read it visually, except when I'm working with a student, I will read it tactually just to spot check where they are or whatever. Yeah, I also did not learn Braille. But I want to make sure that we don't get out of here without hitting that active traveler piece. Because I think that is a huge topic. So let's talk travel. Let's talk O&M and canes and cars. And whoever wants to start. Jackie, you want to start? >>Jackie: Sure. Let's see, well, I drive. I started driving I think when I was 18. >>Kathi: Except left turns, right? >>Jackie: Yeah. No left turns. [Laughter] Only in familiar areas. Definitely. I mean, as they said earlier that there wasn't a lot of communication or, like -- I didn't understand my condition growing up. So when I was 16, I went in there to take the vision test and I could not see anything. And so that was a big wake-up call. And so we went to a low vision doctor and, like, I don't know. They just beefed up my prescription and they signed a paper that I could -- that I didn't have to take the vision test. I guess the eye doctor said. And from then on I've just used that same process. And I started using a cane only maybe when I'm traveling. I think I used it about a year ago. A friend of mine let me borrow hers. When I went to Japan, I wanted to bring it along and try it. So I use a cane once in a while. I probably should use it more often because I'm like I really wish I had my cane right now. Just because it helps a lot when you're in unfamiliar areas. And it helps me -- I feel better about other people knowing that I can't see. I just like having it, holding it so people don't expect me to see things. And then it also is super uncomfortable using a cane and also being able to drive. Just a strange feeling. I don't know. Am I missing anything? >>Kathi: Nope. You got it. Donte. >>Donte: I don't drive. I'm in Florida where, you know, the laws are a little bit more strict here in Florida. Not that they're really trying to pick on us but I think it's more targeted at those who are more mature in age. Much more mature in age. But they can't go after them directly. Just my thoughts. So, you know, I'm at the point where my vision is not good enough to drive in Florida. But I also have never really pressed it. You know, we have pretty good transportation, public transportation here in the county where I work. I also serve on that transportation board and they have a lot of advancements that have made it very easy and very convenient. Just haven't had the need. I also too don't mind not having to worry about gas prices or insurance, all of that. I'm good. I am not a cane user. A lot of O&M going to the School for the Blind in St. Augustine School for the Blind there. A lot of O&M. So I feel very confident traveling even without a cane. I do agree though that if I did use a cane, it would be for identification purposes. It would be just to help someone else identify the fact that I can't see everything that they might be trying to point out to me. But I don't actually have one right now. But I have been in situations where that would have been very helpful. >>Kathi: Thank you. Nick. >>Nick: All right. I would venture to guess I'm probably one of the highest-mileage drivers in the albinism community. I'm probably well over 500,000 miles driven at that point. I obviously drive. I do not use a cane. I think I got a lot of O&M training through the school of hard knocks but I think it was helpful because I just had to figure out, like a normally-sighted person, how to get around places. So you start to build mental models of what does a typical airport look like. What does a typical restaurant look like. Where are these things normally located? How do I find these things? That led me to just have some pretty good, kind of travel skills. I think one of the other things we haven't really addressed yet is depth perception differences in people in albinism and light sensitivity and how that can affect your ability to navigate outdoors, particularly. My wife and myself both have albinism, obviously. We have pretty similar acuities. I think she's better than me than acuity-wise. But our functional vision when outdoors or uneven terrain is vastly different. And so that depth perception is really important when it comes to edge detection. So if you think, you know, it's one thing to worry about edge detection if you're walking on a flat paved surface, like in a downtown area. It's another thing to think about highing in Utah about edge detection. So that ability to kind of trust your feet, understand how environments would be normally set up. Those are things that you're probably not going to get a lot of outdoor hiking O&M training when you're going to school. But using your tools and your environment are helpful. We also use trekking poles a lot when we go hiking. It's helpful in a stability piece but also an off-road version of a cane. There are huge varieties in people in how we engage in the environment and lots of different experiences. >>Kathi: Thank you. Marleena. >>Marleena: Okay. Well, I was actually introduced to the cane when I was in fifth grade. Fifth, sixth grade. And did a lot of mobility training. I actually was walking to and from school. Again, I lived in a really small town and it was relatively safe and stuff. So I think that was why we started the mobility training then because it was really a time where I was going to be actually really needing it. I had a major fear of crossing streets. Like, really bad. It's funny because now I'm crossing six lanes of traffic here in Southern California. I have definitely come a long way and I'm very proud of that too. It took a lot. What do I say about it? When I came out to California, I went to a college that was pretty contained and, like, had a little college town next to it so I could walk into that uptown area. But after college was when I really needed to go back to mobility training because I don't drive and I knew I wasn't ever going to drive. And so I needed to figure out the transportation system and taking the bus. That wasn't something that was available to me growing up in a very rural area. We didn't really have public transportation. So being here in California has been really good for me because I have that available to me. It's not as great as it would be if you were in a more metropolitan area. Having like a subway system or, you know, a light rail or something. But it's worked for me. I take the bus. I've learned how to take the train. And I love my cane. I mean, and what Nick was talking about, the sun sensitivity or the photo phobia and depth perception. My depth perception is terrible. So that's where I really rely on my cane to help me with stairs and curbs. I don't use it all the time. I only use it when I'm traveling by myself or at night. But if I'm at work or in an area that I'm very comfortable with and I feel like I don't need it, I don't use it. And then also using it for that identification piece too. But, yeah. >>Kathi: Yeah. I didn't qualify for O&M when I was in school. And so everything -- and I definitely realized a need for it in college. And at that point just didn't really pursue how to acquire it. So I learned how to use a cane in my Texas Tech orientation and mobility class that was required for me to take to get my TVI certification. And so I started using a cane. And like Marleena and some of the others, I don't use it everywhere. I say that my cane and I have a complicated relationship. It's complicated. You know, because my cane is such an attention junkie. Everywhere I go with it, people want to pay attention to my cane and ask me questions about it. But, you know, I use it when I'm out and about in the community. But if I'm in a pretty familiar environment, I don't. And so I'm not really -- you know, I was thinking about like our students and stuff and I was thinking, yeah, I'm not one of those people that's take your cane, just in case. I look at my cane in the doorway and say can I get away with not using it or do I have to take it? You know, I'm growth minded so maybe I will grow out of that or continue to flourish there. But, yeah. I have noticed over the last 15 or so years that I have been using it that I rely on it a little bit more in those outdoor, unfamiliar environments. And for identification as well. >>Marleena: Kathi, can I just add that -- >>Kathi: Yes, please. >>Marleena: I have my everyday cane. Stanley. You know, I'm sure most of your students or children name their canes. It's a nice thing to do. And then I have one that I blinged out. I do a lot of events and things with my work, so we have red carpet-type things. I blinged one out and I named it Stella. And I take Stella out for those events. And it's fun. >>Kathi: Stella Stilletto. >>Marleena: Kind of. I did have a hard time accepting that this is a tool that I was going to use when I was younger. I do encourage making it fun and making it, you know, something that the kids can be proud of and have fun with it. That it's an extension of them. It's a fun tool to use. Anyway, just thought I'd offer that. Because even adults have fun with that. >>Nick: I want to kind of jump in real quick and tie into something that Marleena mentioned. I've experienced this. I've worked in all kinds of school districts from tiny ones to giant ones. Actually in one of the smaller ones I worked in I had two brothers that had albinism there. Which was statistically ungodly rare in this little tiny town. But I think one of the things I shared with a lot of families with kiddos with albinism is you can absolutely live in a small town, but you're going to have to get a lot more creative for transportation. So there are some benefits to living in bigger cities when you have a visual impairment. There are sidewalks on most every road, for example. There's public transit. There's walkable distances, so maybe you're going to live in downtown rather than suburbs. Like, there are some pros and cons to choosing where you live and realizing there's benefits. Like not everyone has the ability to choose where they live but that's a significant consideration for people with low vision, I think. Is if you have the means, look at some of your options in terms of where you live. Because I've traveled to Seattle, for example. It's one of my favorite places to travel to because their public transit system is insane. D.C. and New York also have some fantastic public travel, public transportation options. But, you know, small town Ohio, you're going to have a hard time getting to the grocery store doing anything other than walking, types of things. >>Kathi: Yeah. So we have just a few minutes left right, Kaycee, before you need to jump in at the 55 after? >>Kaycee: Yes, ma'am. >>Kathi: So I was just wondering, if I don't see any last questions in the chat, I was wondering if there's anything you guys want to share last minute about what has been something that you have really benefited from learning that you've carried into adulthood with you? Or what is something you learned the hard way in adulthood that maybe would have been cool for you to have experience with prior to that? And since I'm putting you on the spot, I will jump in quickly and say that mine has definitely been O&M. I joke about the love-hate relationship I have with my O&M journey and how I've had to recognize that O&M is very dynamic. And my O&M needs have changed many, many times in my life. The biggest one was when I became a single parent and then I was responsible for this little human being as well as myself. And so that's been something that I have definitely, you know, taken that failure into feedback, for sure, and had to learn how to navigate. Anybody else have anything? >>Marleena: I think for me -- and this is more of an adult thing. But I think that as I got older, I was trying really hard to kind of, like, hide or masking that I had a disability. And then I noticed that the minute I decided to just let people know right off the bat, just kind of get it out in the open. Oh, by the way, I want to let you know that I have low vision. And so if I don't wave at you from across the parking lot, it's not me being rude or stand offish or anything. Especially when my girls started going to school and I was meeting other parents and other moms and stuff. I guess I carried a lot of anxiety about people thinking that I looked weird or I had weird mannerisms or things because of my low vision. Once I started doing that, it was a weight lifted off of me. Now I'm very open about it. I don't make it a big deal. I just say, oh, by the way, I wanted to let you know I have low vision. This, this, and this. I think it's also been great for other people too to just know that and also see all the things that I do and that it's not like a big deal, you know? But, anyway, that's just something that I started doing, I would say probably like 14 years ago. And it's really, really helped me, I think. Just letting people know. >>Nick: I think for me -- >>Donte: Go ahead. >>Nick: Donte, go for it. >>Donte: I was going to say real quick. Once you're introduced to one person's visual acuity who has albinism, it's one person's visual acuity who has albinism. There really is no standard. And then the other one is not to lose sight of the social impact. Because I think that, you know, as kids in particular, as they develop socially, it will impact all those other things that you're trying to introduce to them as far as learning and all that. If they don't have that confidence, then it's going to impact how willing they are to take up mobility or learn Braille or whatever it might be. So don't lose sight of that social impact. That's where something like a NOAH comes in or your local Lighthouse or whatever it could be to get them integrated into doing everything that every other kid does so that they have that confidence to take on all those other challenges. >>Nick: Just to piggyback off of Donte, one of the things I kind of think about is the importance of a mindset that can shift. And being aware that no matter how much you plan -- I'm fairly confident I can speak for most of us when we have to meet somebody for the first time. I have to get there first and sit by the door because I'm never going to find them in the restaurant. But getting yourself comfortable in the mindset of you're never going to know everything and you feel uncomfortable at times but you can figure stuff out. It ties back into what Donte was talking about earlier. The importance of feeling what it feels like sometimes to fail and understanding that you can work through that, that failure. Whether it's a big failure or a small failure. And just getting comfortable in that mindset, that head space of I may not know everything right now but I can figure it out. I can use my previous information, my previous knowledge and experiences to kind of figure out my path forward. Being comfortable in that uncomfortableness and knowing that you can figure it out. That is a thing that can impact you across all domains across your life. We never know everything but we can figure out most of the stuff. >>Jackie: I'll contribute. So the hardest thing that I'm still probably working on, someone put in the chat to practice the role playing. And I'm still working on what's my line? Like, oh, when this happens, like, what do I -- you know, what do I say? Hey, by the way, I have low vision? Or excuse me, I cannot see that? Or, oh, yes. Thank you. My hair is very blond. Yes. Blah, blah, blah. What's my line? Yeah, so working that out. >>Kathi: That was me who put that, Jackie. Now that I know, we're going to practice. I got you, girl. >>Jackie: She's like, what's your line, Jackie? [Laughter] Yeah. It's really good. >>Kaycee: Awesome. Thank you so much for all of you panelists and all of you participated by putting things in the chat today as well. This was such a great conversation and I'm sure all of these practitioners and families took some ideas with them. Thank you for your time today.