[Music while photos of previous interviewees] [Narelle] Hey, welcome to the Digital Access Show. My name is Narelle Gatti and today's guest is Laura Garcia. Laura has a wonderful girl, daughter called Eva and Eva has CVI. Now I'm gonna let Laura tell you about Eva because obviously, I don't know much about CVI. Hi, Laura, welcome and thanks for coming. Hello Narelle, nice to see you again. [Narelle] Lovely to see you. Laura, what is CVI? [Laura] So, CVI is cortical visual impairment. Cortical visual impairment is a visual impairment due to damage to the occipital lobe of the brain which is mainly your visual processing centre. And that can happen through a variety of ways. Through Eva it was a viral encaphalitis when she was one years old. So it, it, to break it down for you, it has nothing to do with your eyes. It's not an ocular impairment. Your eyes actually work fine when you have CVI. It's just your brain can't process what you're seeing. So sometimes it's a maze. It's like a kaleidoscope depending on so many different characteristics of vision. [Narelle] So how old is Eva now? [Lauca] She's 12. [Narelle] And how you adapted the house, everything because obviously then Eva, I know Eva works, walks with the cane for mobility. How does Eva manage the world, school, Everything. What are the strategies and techniques that you're using in the different areas? Particularly obviously, I'm very interested in communication and assistive technology. [Laura] Well, to get around physically, so for example in the house, we actually built a house and made it quite accessible to Eva. So very simple rooms come off for ways. Nothing is too crazy. We don't have crazy tiled flooring. We've made nothing with too much patterning and that's, that kind of alleviates Eva's visual fatigue. So, in the house and actually anywhere it's a situation of mapping. So wherever she goes we allow her to map the place with her or without her cane. So she'll like go around and around and remember when she was a kid going around a room in circles, in circles touching stuff, touching stuff going around three, four, five times and then she was comfortable and then she'd sit on her chair. So Eva has really, really good visual mapping skills that helps her get around and navigate quite well and it's the same outside. So going from our house to the shops, she's pretty good at it. Obviously we go with her but, sometimes we just let her walk in front, a few steps in front just to see where she's going. So her visual mapping is excellent. And that's the same as school as well. They did a lot of orientation and mobility to get her around the school. And that's something that takes time. The more she does it, the more the brain makes that connection. And the more that she's able to do it independently on her own. So her orientation abilities is, is quite good. [Narelle] How does she handle school in? So she's 12. So in Queensland, that is start of highschool. [Laura] Yeah, grade seven. [Narelle] Which means different subjects, different teachers for every subject. You're moving between classrooms. A lot more work maybe. I don't know what the. Obviously my kids are all grown up. So it's very different for me than what it is for you with schooling. How have you managed that? Because, you know, you've got teachers doing things different way. You've got different classrooms with different layout. Different, everything will be different. [Laura] Yeah. So we were quite fortunate in that we have an amazing support team that was at our primary school. And people within the Department of Education that the advisory visiting teachers for vision impairment, who worked really hard to ensure that the high school that we were going to was going to be able to support Eva from term one day one. And that included a lot of orientation and mobility starting from term two when she was in grade six. So walking to the high school because it's close by. Navigating the rooms, you know, navigating the science block. Knowing what and not, what not to touch in the science labs. Understanding where her, her building was just walking around constantly. It was like every week or every two weeks. She would go and just walk around with the orientation and mobility specialist from the Department of Education. And then the school did a phenomenal job in just catering for her, her visual stimulation by ensuring that most of her classes, all but two, are in the same classroom, in the same block. [Narelle] Oh, fantastic. [Laura] So she doesn't need to She doesn't need to move very far. She goes in there for base camp, which is home room. She stays in there for most of her classes. But if she's got science, it's in a science lab. And if she has HPE, you know, it's in the hall or in the basketball courts. So there was a lot of moving around and they've, they basically, catered the whole year to Eva right down to the types of teachers that teach her. They chose a teacher's aid they, that was going to learn braille very quickly. And that was going to learn the technology very quickly. They just made sure that we would all be comfortable as much as possible when we started on the first day of school. And it was, it was absolutely phenomenal. And then they went so far as to even ask us to do a video for Eva to present to the school about herself. Because Eva was the first vision impaired student and braille user. So she talked about herself, you know, I have a cane, don't step over it. It's going to hurt you. You know, clear the path when I'm walking through. Don't just say "Hi, Eva". Tell me what your name is because I have a great memory, but it's not that great. I can't remember everyone's voices. She, everything was just prepared. And we have so many kids that now come up to her and go, "Hey, it's Ella." "Hey, it's James.How you going?" So she's got all these, all these kids. And she's like, "Hey guys." So she's, you know, she feels really, you know, part of it. And, you know, the sports is hard. She loves doing certain sports, but it's quite difficult. So I'll give you a really great example of what they've done. She wanted to join the basketball team. And I said, look, I don't, I don't think there's going to be any other kids who can do any form of blind or visually paired basketball. So what are we going to do here? Maybe you can talk to your PE teacher, the head of PE. So she spoke to him and when I had a chat to him. And he's like, right, Eva, you're going to be the assistant to the team manager for the grade seven basketball team. We're going to give you a whistle. You have to come to practice every Tuesday. And you're going to help the team manager just, you know, run them through their drills. Get them prepped. We're going to give you a uniform. And you're going to come to the basketball games. And you're going to give out the basketballs, give out the bibs. And so she's done that. And she just feels amazing. Like she's part of something. [Narelle] Oh, wow. That is, that is a really inclusive teacher. Hey, awesome. [Laura] Oh, it's, it's absolutely amazing. [Narelle] How do, how do the teachers manage? I mean, obviously, teachers will use whiteboards and a lot of visual stuff as well. How does Eva manage that? Or how do the teachers work with Eva to manage that? [Laura] So we try and prep as much as possible beforehand that anything like a handout is already brailed. Anything that is on the board, the teacher will explain to Eva. The teacher's aide, who's with her or the teacher will explain to Eva what's, what's happening. When it comes to group work, it's the same thing. So that the students have to learn how to to cater for Eva's needs in terms of explaining stuff to her. You know, a really good example is drama. She loves drama. She's now part of the drama club. And so everything is verbally explained to her. You know, come and stand. I'm here in my yellow t-shirt. Can you come and stand to my left? You're going to be doing this on the stage. And if you take x amount of steps that's the end of the stage. So we're going to make sure we don't do that. And, you know, there's a lot of, there's a lot of verbalizing that needs to be undertaken. [Narelle] What are the physical effects on Eva of going to high school. I'm thinking really, mental fatigue and noise fatigue because I know myself, and obviously I think people are aware that I have a severe vision impairment. You get very tired of noise. [Laura] 100%. And that's, that's that's typical, I guess, like you said, with all vision impairments, but with CVI, it's, it's so hard to, you know, if there's a, if there's a student two seats away from you writing on a pencil, she can hear that pencil. And she'll be like, "What is that noise?" You know, that's, so she's, we've had to learn to build resilience, that there's going to be that noise. And we use key words with her, like if at home, several people are talking, but I'm talking to her. She's like, oh, can everyone be quiet? I'm like, you need to learn to focus on my voice and my voice only. So that's very hard, but a lot of practicing on focusing on what you need to be focusing on and work really hard to drown out everything else. But of course they cater for her as well. Like we just had an Naplan, which is the first time she's done Naplan. I was, I never wanted to do Naplan before. Grade three's COVID. So we never did it. But this year, I said, this is a really good way for you to learn what an exam condition is like without you actually affecting your report card. Because Naplan doesn't affect her report card. So they, with Naplan, they brailledd everything, but she also had extra time. But she was also in another room. So she was away from the typing. Because I think it's all online now from the typing of the kids or the writing of the notes. So she was separated from that noise. And she had extra time. But it gave an opportunity to realize if I have a question, I can't ask a question in Naplan. I've got to work it out. So. [Narelle] How did she find that? [Laura] She actually said it was not bad. I think grade seven was a great time for her to do in Naplan for the first time. Because I think she was mentally prepared. And this is because with coming to high school, like you said, with so many different teachers, that she's had to really adjust to all the differences that have been happening. But I think it's because she has enjoyed it so much that she's been open to so much change. Whereas in primary school, you know, you're in primary school, you know, from prep to six. And it just became, we had a quite a few challenges for a while. And I think it just really brought her down. But coming into high school, she's like, different teachers, I can join the basketball team. I can join the drama club. I'm not really treated differently. This is amazing. So she was really open to having to do anything different. [Narelle] One of the things that I happen to know, Eva love books. And in particular, she's a massive Harry Potter fan. How does Eva get her books? And how long has Eva been using Braille? Because I know that is how she reads her book. [Laura] So Eva started reading Braille when she was five at the beginning of prep. At the last primary school, she was at, there was a teacher that was a digital, teacher for vision impaired. And she was amazing. She was very firm with Eva. Saying, you will learn this and you will learn this within this set amount of time. And Eva just took to it really well. I mean, at the beginning, there was a bit of a struggle. But she found her motivation when she started reading Peppa Pig. She realized that there was a connection to books. And so that was probably by about grade two. And then she just flourished. So we get our books from Braille House. They're a Braille book library service in Brisbane in Annerlie. And it's a free library service. You email them and they send you books and they send it for free mail to the blind. And Eva's read all the Harry Potter books. She's actually about to finish reading the last book for the second time. So we've gone through all Harry Potter twice. Because she just loved it so much. So I will contact them. Ask them, can we borrow this book? They send it. She reads it. We send it back. Because Braille books are quite, take up a lot of room, that it's probably not feasible for us to have, buy them. And they're also very expensive. So to give you an indication, if you go and buy the full Harry Potter set on Amazon in print, it's like 50 bucks. If you buy it, the whole Braille set of Harry Potter, it's $1,500, which is, it's murder. And it's not fair for somebody that is very tactile and that wants to read. There needs to be some change. And it's not, Braille is not as accessible as it should be. You know, you don't walk into a bookstore, and you're not going to find a Braille book are you? [Narelle] No you don't. [Laura] You don't walk into a library and you're not going to find a Braille book. So there needs to be some change for that. [Narelle] And that's what I was going to ask. What are the challenges that you can see for Eva in the future? And what changes would you like to see to enable Eva to be the independent person that I know you want her to be to go on, have a career, maybe have a family, who knows what Eva's going to do in life? Because Eva is a very out there girl and she's going to have a go. [Laura] I think what it comes down to is, and I use these two words a lot is community and connection. When you have a community that has not even an understand, well and understanding, but also an empathy and a care and compassion towards somebody that has a vision impairment, the doors open and anything is possible. You know, we've been to places where it's not accepted. And then you go to other places like our schools where they've just gone, nothing is impossible. We're going to work out how to cater to your needs. Once you have that community and that connection, I think it's anything is going to be possible for her. And that is a lot of more of raising awareness and understanding of vision impairment. The different types of vision impairment as well. Because you would know that people are like, oh, you're blind. No, there's so many millions of degrees of that. So it's that education as well. The education is absolutely huge. [Narelle] Yeah, it is, it's an interesting one. I find that like even going to a cafe, I get so frustrated Because I can't read the menu. I can't decide how much I want to spend. And, because I can't see the prices. And having one of my vision impaired friends, he's got the knack of sitting there and saying, okay, what do I want today? And he will say, okay, do you have beef? And they'll say, yeah, okay. What do you have in beef? And then he said, you know what, it just becomes words. [Laura] Yeah, exactly. [Narelle] Because all you are is getting spoken. at [Laura] Exactly. [Narelle] And they don't mean to. [Laura] No, they don't. It's a complete lack of education. And you know, that's, I think Bryce was trying to push that as well, that they also do braille menus for cafes and restaurants. And I've done it for our local thai place that we like. And so she can actually read the menu. They just, they just have this complete lack of awareness. And it's, it's, it's not their fault. It's just, they just, we didn't realize. [Narelle] Yeah. And to be honest, I didn't realize before I lost my sight. I had no idea. [Laura] Exactly. [Narelle] What are three takeaways that you'd like to give to the community? Because, well, okay, I'll be honest, I'm very proud that I know you. And I don't, I know Eva through you. And I love watching Eva's journey. But what is three takeaways where the community, that you would like to give as Eva's mum? [Laura] Um, I think, I think originally what I said before, just opening yourself up to it. To not be afraid. So that people are quite fearful when they see somebody approach them that has a vision impairment. So, you know, remove your, your fear. Open yourself up and and communicate. Just communicate. Connect. Connection is huge. And once you connect with somebody that has a vision impairment, it's just, it makes life so much easier. [Narelle] One of the things that I really love whenever I hear you talk about what's happening with Eva. In, in this case, particularly, it's the way the school is also learning. And I think that's a really valuable lesson for everyone that these kids are, they're not just catering to Eva's needs. You know, they're catering to their own needs because they're learning empathy. They're learning another language. Some will learn Braille out of curiosity. And you will get that person that will learn Braille out of curiosity. They will learn that there are people with different communication styles, different mobility styles, and not one person's the same, but everyone can still do it. [Larua] That, that's exactly,exactly what it is. That once you remove that, that, um, uncertainess, then anything is, is possible. You know, it's, the school is a typical example. Though I was uncertain about how they would handle it. They were uncertain, but they, you know what, we're just going to go all in. We are going to hit some speed bumps along the way. That's, that's normal. But we're just going to go all in. And it's made, like you said, it's made other people compassionate. You know, you've got, we've had the real troublemaker, the kids coming up to Eva going, can I take you to the basketball courts and we'll shoot some hoops and she's like sure. So, it's brought out compassion in the most unlikeliest of people. [Narelle] And that's fantastic, Laura. Thank you. Thanks for coming on. Thank you for telling people about Eva's journey. It's an important journey that, you know, if you want to contact Laura and find out more about Eva's journey and the challenges that Eva has broken through and she had, you'd be amazed watching young Eva. How can they contact you, Laura? [Laura] Well, I have a website which is adventuresinneuroplasticity.com that you can jump onto there. And you can also jump onto my LinkedIn as well under Laura Garcia. [Narelle] Awesome. So, I'll put that up as well on the end. I'll put the website name. That will give everyone your access. And again, thanks. Give our regards to Eva. Now, if you'd like to, if you'd like what we're doing, please like, subscribe, share, tell others, have a listen because we're keeping bringing you stories about how people use assistive technologies to be independent. It also depends on the community. As Laura said, Braille is a great way to do it. As Eva goes to a high school, there'll be websites, there'll be a lot more challenges. And once Eva becomes an adult, pay bills Eva, get that job girl. And it will happen. But it can only happen. Oh, it will, Laura, trust me. [Laura is laughing] [Narelle] It will happen, but it can only happen with the community being part of it all as the community. So, thank you, like, share, subscribe. And I'm not sure who our guest is next week, but I know I will find someone that is great and interesting for you. See you next time. [Music]