Transcript of CVI Live! Transcriber Notes: 1. Audio quality was distorted at times due to connectivity issues throughout. 2. Sebastian, who is referred to throughout this video, is Stephanie's son and has CVI. Stephanie Duesing: --CVI with my three guests. I have Dagbjört Andrésdóttir, Erin Jepsen, and Jonathan Mahy to talk with me today and I would like to just tell you a bit about myself before we begin. My name is Stephanie Duesing and I'm the author of "Eyeless Mind". It's the true story of our discovery of my son Sebastian's almost total blindness at the age of fifteen. Sebastian is the only person in the world known to process his vision verbally, which means that he sees with words like a bat sees with sound. We experienced horrific malpractice trying to get a diagnosis for what turned out to be a common visual impairment. Cerebral/cortical visual impairment was is identified as the number one cause of visual impairment in the developed world more than ten years ago, and it still doesn't have a diagnostic codes. There are tens of thousands of people here in the United States alone who have CVI, and there's only a handful of doctors in the entire world who have any real medical understanding of what CVI is or how to diagnose it. In addition, the vast majority of Teachers of the Visually Impaired receive little to no training in CVI, although, on average, more than half of the students in their caseload have it. It's a [inaudible] public health crisis. And so today, we are talking with people who live with CVI to talk about the challenges and successes of what it's like to have, what it's like to see through the brain of a person who has CVI, and what it's like -- the things that can be done perhaps to help people who have CVI. So welcome, everybody! I'm so glad you're here today. I'm going to start today with Erin. Can you tell everybody a little bit about yourself? Erin Jepsen, please, give everyone a "hello" to Erin, and tell us a little bit about who you are and where you're from. Erin Jepsen: Hi! I'm Erin. I live in Moscow, Idaho and I'm 43 years old. I have -- I don't know how long of a story to tell. I have not officially been diagnosed with CVI. I have not been able to find a doctor yet who understands CVI or can test to give me the right diagnosis. I've always had doctors who just look at the health of the eyeball and they say, "Oh, we'll correct your nearsightedness and your eyeball is healthy and you're good to go!" So, I'm still on the journey of seeking a diagnosis. The thing that led me to CVI is research. I knew there was something wrong and I just kept looking and kept looking and kept looking and kept looking. Stephanie: You're also a parent of two visually impaired children -- one blind, correct? Erin: That's right. My son -- I have 4 children -- two are sighted. My son also has CVI, I'm pretty sure. [referring to video connection disappearing] Can you still see me? I lost you. Stephanie: I can see you. Jonathan: Yeah. Dagbjört: Yeah, I can see you. Erin: Okay. Well, hopefully it'll come back. My son has CVI, I'm pretty sure, and my daughter is adopted from Ethiopia and she is totally blind. She lost her sight due to glaucoma. Stephanie: Mhmm. Yeah, so you have some experience working with people with visual impairments of a variety of kinds, and/or blindness. Erin: Yes. Stephanie: Yeah, so you're pretty well-informed when you said you did some research; it doesn't mean that you, like, Googled Wikipedia. [laughing] Erin: No. Stephanie: Correct? Erin: That was in their [inaudible]! [laughing] Stephanie: So thank you, Erin, that's wonderful. I'm really glad you're here today. So, Jonathan, would you like to tell us a little bit about where you're from and what you do? Jonathan: [speaking with noticeable speech disability and U.K. accent] I am from the U.K. in [inaudible]. I'm 27 and yeah, I am -- I -- back in uh, 2009, even though I had spent many, many years at the blind school in Exeter, they, well, they said that I might have a right field loss. And, so, I went for the eye appointment and then he said he wasn't sure. Um, but then he said, 'cause I was always -- I was already registered -- they registered me visually impaired about 2 years previous to that. And, then he said, y-you, "Well, do you go out on your own and all of this? And I said "Yes". "Do you carry a phone?" I said "yes". And he said, "Well, I think in the real world it would take you twice as long to do things so you should be registered blind." So he done the registration. Then I was registered blind. It was the first time he called it Cere--it was the first time he quoted cerebral vision to me, but I don't know if they knew before that, but it's the first time they used the word "CVI". And then I -- then I started looking it up on Google. Stephanie: And, again, how old were you? Jonathan: How old was I? Stephanie: Yes, how old were you when that happened? Jonathan: I -- I was sixteen. Stephanie: Sixteen. So first sixteen, and you are actually legally blind in U.K., correct? Jonathan: Yeah. Yeah. Stephanie: Yeah. So at sixteen they finally discovered you are actually legally blind. That's quite an amazing story. I'm sure there's a lot behind that as well. Dagbjört, would you like to tell us a little bit about yourself, please, to tell everyone? Dagbjört: [speaking with Icelandic accent] So, hi everyone, and thank you for watching. I am Dagbjört. I am now 28 years old and in 2018 I was first diagnosed with CVI after being born early in 1991, receiving traumatic brain injury for that reason. So, it wasn't until I got 24 years old that I was diagnosed. And, I'm a singer. And the big problem for me is that I don't recognize any music notes. Understanding of that or lack thereof is quite significant, so... Stephanie: Everyone should know that Dagbjört is a very talented singer. She sings the most challenging opera, arias, and the repertoire from the [tripping on word] oratorio repertoire -- I can't talk today -- but she sings the most challenging areas and she does it all by ear without the ability to read music. And having the ability to read music doesn't hold her back as a singer; it holds her back in her university program. So, I think we should make sure that everybody understands that it's not affecting her ability to sing one bit. Dagbjört: No. Stephanie: No. So what would have helped you the most, Dagbjört, when you were growing up? What things, when you were growing up with no one knowing that you were blind? [muffled] What was that like? Dagbjört: Well, when I was growing up, I didn't really think anything [sound dropping]. I was like, I didn't what was [sound cutting out]. So I really can't even think of what I would have -- would have helped, but I supposed that I suppose that having a TVI would have helped -- Teacher of the Visually Impaired -- but I had a Special Ed teacher, so I guess that knowledge, understanding, appreciation, of what had happened, of what was wrong with my vision, would have helped the most. Stephanie: Well, we had a really interesting conversation either yesterday or today when we talked before, about your experiences in occupational therapy as a small child, and for those who haven't met Dagbjört before, we're good friends, so we have a lot of conversations. And Dagbjört actually spent a lot of her childhood looking down at her feet in order to see her feet as she walked, and being constantly told by, you know, occupational therapists and others to stand up straight and look ahead. And as we talked about in our last broadcast, she has lower visual field loss, which means that she can't see anything from the nose down. And so, being told to look straight ahead, then of course she can't see her feet. So, talk to me about the discovery you had about that little house that you had to climb. Do you remember what you told me? Dagbjört: So, yeah, as Stephanie was saying, I have this lower field loss, so below my nose I can't see, sides are like I see half of what's at my side. And upper field is close to none. So, I would guess that you would call it tunnel vision. So, when I was a kid, from what -- 6 months to 17 years old -- I was in both physical and occupational therapy without people knowing that I was legally blind. And when I was a little kid in occupational therapy, probably during the age of 4 or 5 to 7 or 8, my sessions were, for some reason, videotaped, and I haven't seen those videos in years -- and honestly -- until today, I had forgotten about them. So it-- Stephanie: Tell us about the activity -- what activity did they have you do blind? What was that? Dagbjört: So, for example, they would put up this little obstacle course for me. Jonathan: [laughing] [everyone laughing] Jonathan: Sorry -- sorry. Go on. Dagbjört: I know, it's absurd, you know? Jonathan: Carry on. Carry on. [more laughter] Stephanie: So [inaudible] blind child through an obstacle course and wonder why -- Dagbjört: -- they told me I would have to navigate the obstacle course by, like, climbing up and sliding through, and of course I didn't see a single thing, and, like, in front of every obstacle I would stop and think for several minutes. And, like, be in total distress about why couldn't I even walk through it, you know? And then, I would have -- I had to learn to put my socks on in occupational therapy because I didn't see my feet. Stephanie: Mhmm. Dagbjört: Also, there was this little -- you know -- these houses, these little houses kids climbed on? So, they would have one of these houses and let me -- they would say -- tell me to climb on it all the way to the top and back down. Stephanie: Right. Dagbjört: Well, of course, I didn't see anything, so I sat there, basically crying. Stephanie: So it was [inaudible] traumatic. Dagbjört: Yeah. Stephanie: It's very traumatic to be put in these positions and you cried and expressed a great deal of frustration and fear and nobody had any idea why. Dagbjört: Nope. Stephanie: Nobody had a clue and mobody thought to test your visual field. Nobody thought to check your visual field. I think we might have lost Erin, here. She seems like she -- are you here, Erin? Erin: I can hear you just fine. I just can't see -- my screen is blank. But, if you can hear me, I'm here. Stephanie: Okay, that's fine, just want to make sure you're still here. Dagbjört [to Erin]: I can hear you. Stephanie: So a great deal of trauma in daily life, not just in occupational therapy, but in daily life, with managing things like stairs, tripping over things, going to school, gym class, [inaudible], those types of things, and having no on test you and nobody have a clue what was causing your distress, right? So, Erin, did you have experiences like that as well, growing up? Like, what were the things that were most frustrating for you as a child, to be misunderstood so badly? What were your symptoms? What happened to you? Erin: I did. Hearing that story [voicing breaking] is really difficult for me emotionally, because it's so much like mine. Stephanie: Right. Erin: And nobody thought to check for CVI, I think because I didn't have any known trauma. I didn't have a head injury; I didn't have birth trauma. So, that wasn't anything anybody thought to check for, I guess. I don't know why they didn't. But, I struggled with stairs. I struggled with way-finding, getting lost. I tell people that I'm so used to being lost I just kind of learned to navigate using it. [laughing] Like, I'm just, I'm like I have a good sense of direction of where I want to end up, and so with way-finding [echo repeating what Erin said in background] -- there's an echo on my computer. I'm hearing myself. Stephanie: Yeah, I don't know what the echo is. I'm sorry. Erin: Oh, okay. Well as long as it's not bugging you guys, I can deal. I also -- you mentioned gym classes -- and for me gym class was just pure Hell. Dagbjört: Yeah, pure Hell. Erin: It was pretty much torture. Dagbjört: Yeah, I know. Erin: I remember some specific instances. I didn't have to take very many years of gym, thankfully, but I could never hit any ball. Balls would just hit me in the face, even if I was facing them. I remember tripping over a shadow on the gym floor and spraining both knees. Dagbjört: Yeah! Erin: I remember trying to get to the gym and there was a chain that separated the [plaf?] from the parking lot and I had to step over the chain, and I tried to hop over it as kids do and I caught my toe on it because I misjudged where it was and fell and sprained both wrists. Stephanie: Mhmm. Erin: There's so many -- and just the amount of panic every day going and knowing that I would have to do stuff and try and keep up and be expected to just do what everybody else seemed to be able to do so effortlessly and I didn't know why. I thought everybody saw like me. Stephanie: Right. Erin: I didn't know -- I din't know that people could see their feet. I didn't know people could see people next to them. I didn't know they could see balls coming. Dagbjört: Exactly. Jonathan: Yeah, because -- [all jumping in simultaneously because of sound delay] Stephanie: -- and for anybody listening who doesn't know much about CVI -- and I hope there's a lot of people listening who are just learning about CVI now because everybody -- every parent needs to know, every doctor needs to know, every teacher needs to know, CVI -- every child who's born with CVI assumes their vision is typical. They have no way of comparing what they have to what anybody else has, so they assume that what they see is what everybody else sees and they can't simply speak up and say "Oh, I think there's something wrong with my vision" because they don't have any idea what typical vision is like. And they just have no way of knowing, and so it's really important to listen to these stories and understand that these people -- that they have real issues with their vision and they really need to be listened to when they're able to talk about it. And something Jonathan said to me in a conversation the other day -- you told me, Jonathan, you know, when they finally discovered you have lower visual field loss, that you knew before then. That people were saying "Look here! Look down here" and you knew you couldn't see it. And -- Jonathan: Right. Stephanie: -- so do you feel like you were listened to? Did people listen to you when you said "I can't. I can't see"? Jonathan: Not one at the time. Stephanie: Right. Erin: That was my experience as well. Dagbjört: Yeah, mine too. Jonathan: It depended who it was. I mean, sometimes -- I would like to think I was, at a blind school, that I was, but it -- it really -- it really depends because it depends if you -- if you were -- if you were around somebody that was trained in -- if you were around a visually impaired teacher, because not everybody -- not everybody had the qualifications or had any idea about how people's vision were. Stephanie: Yes. And so you had different levels -- Jonathan: so -- yeah. But I would say run-of-the-mill, I mean, yeah -- I mean, nobody -- not -- people didn't really -- I wouldn't say -- I would say that people didn't -- they don't -- even to this day they don't understand when I say to people about -- you know, when I go along in my wheelchair I have no idea what's on the ground without actually moving my head, so I go along looking -- it's, you know it's, -- it's just -- it's just luck of the draw, really. That's all I can say, is that -- you know, you -- you communicate -- you say to people, that "oh yeah, I can see this but I have to -- I have to move my head in order to see it" -- they're a bit stumped, really. Stephanie: Yeah. Jonathan: So I guess they try to understand but the understanding is not -- not all there. Stephanie: Yeah. So it varies widely by the person and some people a bit more than others. Jonathan: Yeah. Stephanie: So you had some people who understood. That's wonderful, especially being in a blind school, that there were people who got it, and that that is really helpful, that you had some support from some people, trying to understand and trying to help you, you know? Because I think the frustration that so many people that I've encountered is just the lack of knowledge from so many people in the profession and how important it is to improve understanding about the symptoms of CVI and what people who have CVI actually can see. So, I have a question for you, Jonathan. Can you recognize faces? Jonathan: I would say close up but from a distance I -- I -- I wouldn't. Stephanie: Yeah. It's harder. Jonathan: So -- Stephanie: And what about -- so your ability to navigate -- is navigation an issue for you too? Jonathan: I would say navigation is an issue for me, especially if I haven't been -- if I haven't been to a place before, it's certainly an issue. And if I've been to the place before but I haven't been there for a long time, it can still be an issue because I can't always remember what the place -- I try to have a visual memory of it when I've been somewhere once -- but I can't always remember what the place looked like, so I can sometimes do it, and sometimes still -- you know, get lost or go the wrong way, you know. Yeah, it's hard; it has its challenges. Yeah, I know it's still -- you know, even, but yeah, I mean, yes -- navigation is an issue, even with -- even with smartphones and following maps. I cannot follow maps for the life of me. Dagbjört: Yep, nope. Jonathan: It's terrible. Dagbjört: Yeah. Stephanie: Really life-[inaudible]. Jonathan: And the funny thing is, is like, well yeah, I can see the map, but I can't make sense of it at all. Dagbjört: Yeah. Jonathan: And -- it's hard because people around you don't understand it and it's -- it's really, really hard for me to explain because I don't know how somebody else sees in order to com-- I don't know how somebody else sees in order to compare it -- in order to compare, you know, normal vision with my vision. Dagbjört: Right. Stephanie: Right. And even if you were able to -- welcome back, Erin! Erin: Hi, I think I got it working again! Stephanie: [to self] How do I do -- there we go. [addressing audience again] We've got a bit of a funny connection with you. I'm not sure why. I'm sorry that we lost you there for a minute. We were talking about differences in visual perception and things that are [inaudible]. And I saw a lot of sympathetic nodding from Dagbjört about navigation issue sand the ability to read maps, and you know, perhaps being able to read the words on the map, maybe, like Dagbjört can read very well, but still not being to comprehend the map to make any sense of it. And, so, you know, I think this issue with navigation is huge and the need for orientation and mobility services for children who have CVI -- not every child who has CVI will necessarily experience problems with navigation; every child is unique -- but it's definitely -- for the children who need it, it's really crucial. And I loved, Erin, how you talked about that terrible fear that -- that terrible, terrible fear of being lost and alone. I can't remember your exact wording. Maybe you could speak to that. What does it feel like to be a child and lost, like that? What does that feel like? [silence] Are you there, Erin? [silence] We just don't have a good connection. I lost everybody, I think. Jonathan: No, you haven't. Stephanie: Erin? Dagbjört? Can you hear me? Dagbjört: I can hear you. Jonathan: Yeah, I can hear you. Erin: I can hear you. Can you hear me? Stephanie: Okay, good. I felt like everybody froze there for a moment. Yeah, I can hear you now. Would you like to speak to, again, the emotional impact of not having orientation and mobility services as a child? Erin: Yes. Stephanie: What does that do you to you as a child to be lost like that everywhere you go? Erin: I think, because I didn't realize it was unusual, I thought that I -- that there was something wrong with me, that everybody was more clever or more brave than me. I just -- whenever I tried to tell anybody about it, they told me to stop complaining, basically. So, if I felt panicky -- Dagbjört: Yeah. Erin: -- I tried to just hide it. I tried to just never tell anybody. I see Nai is chatting. [There is a text screen that accompanies the video where viewers can comment.] [audio delays and distorted sound from connectivity issues causing awkward timing with turn-taking in next part] Stephanie: [inaudible due to overlap] Sebastian tells me always he always knew that -- what is Nai saying? Yeah. I couldn't hear that. I couldn't hear that. Anyway, what Sebastian said is he always knew that everyone -- he was way more freaked out going places than everybody else was but he had absolutely no idea why -- Erin: Yeah! Stephanie: -- and so the sense that you're different in some fundamental way but no idea why you're scared to go down the hallway -- Erin: Yeah. Stephanie: -- to the library when everybody else is like "Oh, it's library time!" Right? Erin: Uh huh. Stephanie: Right? So I think orientation and mobility services for children who have CVI who need it -- it's just so crucial and to assess children for lower visual field loss and all types of visual field loss is crucial. So important. So, I guess I'd like to ask you, Dagbjört, what would you want low vision professionals to know about CVI? Like, Dagbjört, if you could tell the whole world, like every ophthalmologist, what you would like them to know -- or like TVIs, what would you like them to know about CVI? Dagbjört: It's -- wow, so I might need an hour just to [inaudible]. Like, in short -- [laughter] Dagbjört: -- It's a real thing. It's a real, real -- Erin: Yep. Yes. Yes. Yes. So much yes! Dagbjört: It's a real visual impairment. And like, with CVI, even though we see, we are freaking blind! You know? It's -- [laughter] Dagbjört: You know? Stephanie: Thank you! Even though you can read -- [overlapping] Dagbjört: -- blind! You know, you have feet, but you might need a wheelchair. Jonathan: Mhmm. Dagbjört: You have ears -- Stephanie: Mhmm. Dagbjört: -- but maybe you're deaf. Erin: Right. Dagbjört: We have eyes, but we're blind. It's the same thing. Erin: Right. Right! Dagbjört: Also -- children. Stephanie: So it's a real condition. Go ahead. Dagbjört: Also, children with CVI -- you know, it's awesome that people are diagnosing children right now with CVI and doing all these services for children with CVI. But what is missing is that these children will become adults. Erin: Like me! Dagbjört: And what then? Like you! Or Jonathan, or me, or Sebastian. And what then? If the children -- Stephanie: And where are the services for adults? Dagbjört: If the children get to be adults and stop being children, they still need services. Jonathan: The services die down when you turn 19. Dagbjört: It dies down. So why?! Yeah? [laughing] That's the big problem! Stephanie: Right? [sarcastically] Like you magically become un-blind when you turn 18, right? It's just like the light goes on and everything works and you can see! [all laughing] You blow out the candles on your birthday cake and you're no longer blind! [laughing] Dagbjört: Uh huh! Jonathan: I know! But nothing changes -- yeah. Nothing changes when you turn 18. Dagbjört: Yeah, exactly. It's like if you're born with some diseases, you know? Erin: [inaudible] -- of the transition programs, but that has to be if you're receiving services as a child, which I didn't. Dagbjört: Exactly. Right? Somebody is asking here "Is this being recorded?" Yeah, it will be recorded, so you can -- you can show somebody after, later. Erin: I have to quit messing with it and just hope it works. Stephanie: Yeah, it'll be on my [muffled] -- I will post this on my Stephanie Duesing Author page. It's not my personal friend timeline; it's on my author timeline, and so you'll be able to see the recording there, if you jumped on late, or you can watch the whole thing and share it. So, yeah, so the fact that it's a real disability shared by millions of people around the world, that it doesn't magically go away, and that it has actual -- that you're blind. And people who have CVI can have surprisingly abilities and appear to be typically-sighted. For example, my son, Sebastian -- Erin: They do appear -- yeah. [Jonathan sneezing] Stephanie: -- walked around completely typically sighted. For fifteen years, we had no idea. It was literally luck that we figured it out, and I'm sure that anybody who has the ability to read will fly under th radar. And what I really think is important for Teachers of the Visually Impaired and ophthalmologists to understand is that there are more than two decades of research demonstrating that music and movement in early childhood had huge neurological benefits that improve everything from balance and coordination and fine and gross motor skills, high-order thinking skills, reading and math ability, auditory discrimination, language development, and IQ. And so any child who comes from even a casually musical family can be walking around with what appears to be normal developmental milestones and looking like they're typically sighted, and just, I'm sure for you, Erin, and you know, that you weren't identified with anything, were you? Did we lose Erin, again? Can you hear me? Dagbjört: Yeah, she's -- Stephanie: I think we lost Erin again. Bad connection. Well, hopefully, she will come back in just a moment. But I just think it's so important for people to know that the music connection is there -- here, let's see if she can come back here -- Erin's on her way back -- hopefully she can answer the question. Dagbjört: There were go. Here I am. Stephanie: Are you back, Erin? Erin: I think so. Stephanie: Not yet? Well, I know for a fact that Dagbjört had a musical family and her grandfather spent a lot of time singing with you, Dagbjört, and also your family. Dagbjört: Mhmm. Parents, too. Stephanie: You want to talk about the music part? Dagbjört: Mhmm. [overlapping distorted speech] So, nobody actually in my family is professional in music, but I was raised very musically and my mom would sing to me. My grandfather would sing to me. We would listen to all kinds of stuff. And I seriously think that if it wasn't for that, I wouldn't function as I do. Why? Because -- Stephanie: Well, there's -- there's two decades of research proving that you would -- that you got benefits from that. It's not, you know -- there's two decades of research. They've known for twenty years. Musicians' brains are actually -- they have more connections between the hemispheres than non-musicians do. Dagbjört: Mhmm. Jonathan: Got it. Stephanie: And it's because they -- it's just an amazing benefit. Well, that's really helpful, Dagbjört, thank you so much. So, Jonathan, would you like to address, like, what you would want vision professionals to know about CVI? Ophthalmologists or TVIs? What would you want to tell people about this condition? Jonathan: I don't know, really -- I would -- I would just like to -- like to say that I have a terrible time reading print. It's like I can see the letters there. I can see that there are words there and I could spell you out the letters. I can actually read out the individual letters. But putting the words together -- it's not -- it's -- it just doesn't -- I just can't do it, for some reason. Even in size 36, and that's the font size I like. And so I guess it's -- it's -- Stephanie: Mhmm. Jonathan: -- It's not -- it's something that I think maybe professionals should be aware of that, you know, even they should know that -- you know -- they should take into consideration that reading could be -- could be an issue, I guess, for somebody with CVI or not. But I'm just saying it is -- it is an issue for me, reading. And, yeah. Stephanie: [inaudible] -- instead of reading, do you find other technology helpful? Jonathan: Yeah, I have -- I use screen readers when I'm on the computer. I scan -- I scan letters, documents into my computer -- into my Mac. And you know, I grab audiobooks and stuff when I can. But I just -- I just -- I just -- that doesn't seem to be an ounce of any knowledge of being this -- this issue -- about being able to see information but not being able to read -- not being able to understand what it means and being able to read letter-by-letter but not being able to read the whole word Dagbjört: Mhmm. Jonathan: -- not being able to know what the whole word says -- even with one word coming up and stuff, so yeah, I guess that's -- that's what I would like to -- like to say, really, that I think -- somebody's ability to read should be -- should be watched by ophthalmologists and doctors. Dagbjört: Sure. Stephanie: Yeah. Speak to me about braille and because you did go to blind school -- Jonathan: I did, yeah. Stephanie: -- what happened with that? Jonathan: They just said because Iv'e got central vision -- because -- because I can see -- because I've got some sight -- that braille wouldn't -- wouldn't be appropriate. For a start, my finger -- my finger wouldn't be sensitive enough to read it, and that was as far as that went. Erin: That's baloney! Jonathan: Yeah -- and this -- this is just -- it's something that was never -- that was never spoken about again. And they -- they weren't willing to do the teaching of it, I guess, but the way I struggle with written information around me now, it's -- it's a great shame I never got the opportunity -- opportunity to learn braille. Yeah, I'm very -- I find that a very -- a very weird and -- Erin: That is weird. Jonathan: -- and annoying thing. Especially because I went to the right -- especially because I went to blind school. Stephanie: Thank you. Erin: Right? Did you know? I taught myself braille. Stephanie: In our conversation that we had on the phone the other day, you know, what you said to me really struck hard, and it said they told you that you're not sensitive enough and yet they didn't actually let you try. Jonathan: No. Stephanie: They never actually gave you some braille to let you feel, to see, and they just made this assumption about your abilities without actually letting you try and see. You were never given an opportunity and a choice to see if you liked it, if you found it helpful, if it was better for you. And that -- Jonathan I don't really -- Stephanie: -- really struck me -- the lack of even -- you don't know? Jonathan: I don't really think they even -- I don't even think that they were even aware that I could read -- that I couldn't read -- before I started having learning -- before I started having learning support -- because it's the learning support -- my learning support teacher that went and told some of the main teachers that I worked with that I couldn't -- that I couldn't decode print. Stephanie: Mhmm. Jonathan: And I don't think anybody was aware of it up until that point and it just makes -- it just makes me laugh because I started working with learning support called [inaudible] in 2006 and I was -- I started at the Westminster School in 2005 -- so they had -- so they kind of knew me -- for longer than this learning support coordinator -- they saw me in lessons -- and nobody ever picked up on the idea that I couldn't read print, which is -- which is bonkers. Erin: That's crazy. Dagbjört: That's super crazy. Jonathan: It's the only -- it's a polite way of putting it! [laughing] [all jumping in simultaneously, overlapping] Erin: You know, I taught myself Braille. Stephanie: I'd like to avoid [inaudible] institutions, and things like that, because I'm sure that everybody involved was [inaudible] as hard as they could and doing the best that they could with the information that they had at the time, but -- Jonathan: -- Well, I'm sure, I mean I never -- I never thought that nobody was doing the best that they could do, but the problem is I think when you go to an institution like that, I think, or a special needs education, I just feel that, you know -- that they put you there -- that the education authorities put you in there because they've obviously -- they obviously know that you have sight -- sight -- sight problems, then maybe you're just think you're there now, nothing else needs to be -- Stephanie: [speaking, sound distorted] Jonathan: What's that? Stephanie: I'm sorry, Jonathan, we're kind of losing you there. I lost you there for a moment. Sorry about that. Didn't mean to interrupt you. [inaudible distorted speech] Erin, did you manage to get back in? I can't see you. [audible but very distorted] We're having some connection issues, I think. Sorry, I think we lost Erin. [inaudible] Jonathan: Yeah, I think we have again. Stephanie: [inaudible distorted speech] Dagbjört: You're also breaking a little bit up, Stephanie. Stephanie: Sorry, everybody. Jonathan: It's okay. Stephanie: Yeah, I'm breaking up, too. Technology is my enemy. I'm sorry, everybody. Jonathan: Technology is brilliant when it works. Erin: [very distorted] Can you hear me now? [distorted laughter] Stephanie: [distorted] Yes, it is. [clearer] Okay, so let's turn our conversation here for a few minutes to talk about -- talking about CVI to parents of small children who have it and like, what kinds of things can you offer? Dagbjört, would you like to go first, and tell us about how -- how would you talk to a parent of a small child and what would you tell them that might reassure them, you know, give [inaudible] on things that could help them, so do you have any insights in that? Dagbjört: So, of course, I don't remember myself as a baby. [laughing] So... Stephanie: No. Dagbjört: I don't know, maybe just...many really brightly-colored toys? A lot of -- you know, it's -- but, like, one at a time? So it's not, like, ten toys visually accessible at a time -- it's not going to help. So, maybe they'll have one toy that they like very much, but if you put that toy among five other toys, they're not going to find it. Jonathan: Yeah. Dagbjört: So -- Stephanie: So, issues with the visual complexity -- Dagbjört: Yeah. Stephanie: -- visual crowding, and things like that. Yeah, sure. Jonathan: Visual crowding. Dagbjört: So [inaudible] visual crowding as much as -- Stephanie: -- you know, things that they could -- Jonathan: Visual crowding is the worst. Stephanie: Yeah. [inaudibly distorted] That's a really [sound cuts off] -- when do you experience visual crowding? [distorted laughter] Jonathan: When do I -- when do I experience visual crowding? [others speaking with distorted speech in background] [silence] Dagbjört: I'm not hearing you guys. Jonathan: Hello? Stephanie: Okay. [sound cutting in and out] [reading off text chat] "I would like" -- someone is asking -- "I would like to hear more about what they 'see'" -- this is from Paula Cole Tyson -- "I would like to hear more about what they 'see'. I've heard a kaleidoscope or impressionist painting." That's a great question. So, let's take a look at that question, first, then we'll come back to advice for parents and things like that. So I'll talk about Sebastian's vision first. So, for Sebastian, the only things that he can recognize the way a typically sighted person can are: words, letters, numbers, and actually, simple shapes he doesn't recognize the same way. He uses something called pantomiming to recognize simple shapes, which means that he uses motion perception. If things -- if he moves any part of his body, or thinks about moving any part of his body in the shape of a circle or a square or a triangle or any simple shape -- he can actually create a visual image of that shape by motion -- or thinking about motion. But [distorted speech] -- as for numbers and those symbols, he can recognize them like anyone else does; it works the same way. But those are the only things that he sees the way that we do. Nothing else ever looks familiar to him, so what that means is, everywhere he goes -- nothing looks familiar to him anywhere, ever, except for words and letters and numbers. And so, basically his visual -- his functional vision -- his visual world, is like being out in the middle of a very colorful foggy ocean. He has something called simultanagnosia, which is a really common symptom of CVI, and simultanagnosia is where you have full visual fields like a typically sighted person does, but it's so blurry, or you only have patches -- I can't speak for all people who have simultanagnosia -- some people may have multiple patches -- I actually don't know -- but Sebastian -- Jonathan: I think I have that. Stephanie: [very distorted] -- has a very small patch -- like looking through a [inaudible]-spot -- it's just tiny -- and so he has this tiny patch of acuity in the center. It is not black around the edges like we think with tunnel vision. It's blurry, and so he can perceive light and color and motion and vague blurry shapes in the area around that patch and through that little patch of acuity, he can see words, letters, and numbers, and nothing else ever looks familiar. So he's literally out in the middle of a visual -- like a foggy ocean. As he travels through space, things like streets signs and store signs jump out at him in this blur of unrecognizable chaos, and he can read the signs, so he can read the street signs, but he cannot create a type of mental map of his world because the street signs are not attached to any recognizable object or store or anything like that. And, I think, we're trying to get Erin back for like the sixth time; we keep losing her. That's Sebastian's visual -- functional vision. Dagbjört, we've had a lot of conversations. So, Sebastian can't recognize faces or [inaudible] or objects or even biological forms like his hands, his feet, a dog or a cat. He [inaudible distortion] in words so he assigns characteristics to things. So my characteristics are "tall-blonde-glasses", and when he thinks those words to himself, he gets just a momentary glimpse of what I look like -- and they captured that in the fMRI for the Harvard [inaudible] neuroplasticity research study. So, Dagbjört has some interesting similarities to Sebastian's vision but also some big differences. So, Dagbjört, do you want to talk about your ability to recognize faces, places, things like that? Dagbjört: Yeah. So, I can recognize faces. I don't know why. I can recognize places, but navigating through them is another issue. So, I would for, example, say that, besides having tunnel vision, what of acuity that I have, I would say that it's -- do you know these books that there's -- this book that you have to find this little guy, Waldo? "Where's Waldo?" Stephanie: Yeah, "Where's Waldo?" Yeah. Dagbjört: So, I would say that the whole world, like for me, is always, every single day, every second of every day, like living in a "Where's Waldo?" book. Stephanie: That's -- Erin: That's a brilliant way to describe that! Dagbjört: You don't -- you can't -- it's like, for example, when I'm walking from my home to the bus stop, I know where I'm going, but I don't recognize where I'm going. I just know it because I know that I have to go left or right or ahead or back. Jonathan: Yeah. Dagbjört: I just don't recognize the environment. Stephanie: Yeah, so Sebastian, actually -- yeah, so you kind of feel it in your body when you need to turn. Sebastian uses haptic memory, like in our house and any familiar area that he's walked a lot of times. It's like learning [distorted] a dance where your body just remembers how it feels. So, in our home, he doesn't really have to count his steps and turns around our house anymore because his body just remembers where the turns are because he's done so millions of times, and I'm sure when you go to the bus stop that it's sort of the same -- you remember where that turn is cause you have kind of a general idea, right, of like how many steps it is, of how far it is. What was it like when you got your white cane? Dagbjört: That's a story. [laughing] Stephanie: [laughing] Dagbjört: So, it's a big help for me. I can tell you that. It has changed my life for the better, seriously. And I don't understand why I didn't get it sooner. Obviously, because nobody diagnosed me with CVI, but the big thing is that my ophthalmologist -- he -- when I went to the lesson to actually learn how to use it, they -- the ophthalmologist passed me in the corridor and I greeted him and he looked at me and he said: "Why are you spending your time in this? It's -- you're wasting your time. It's -- you don't -- you see too well for this. Stephanie: [laughing] And you had total visual field loss from here down, and can't see stairs, and can't see obstacles in your path, and can't see your own feet, and there's nothing down there. Dagbjört: There's nothing. Stephanie: Right. It's crazy. Dagbjört: What he said was -- he told me that when I booked an appointment with him, to actually get confirmed diagnosis of CVI -- that I -- that he thought I was there to let him write a permission for me to drive. Erin: Oh, no! Stephanie: [sound breaking up] -- bad connection here, but let me see if we can get that to come out a little clearer -- [inaudible], Dagbjört. Dagbjört: Hm? Stephanie: Did you lose me, too? [sound of laughter through broken up sound] Dagbjört: [distorted] We have a super bad connection here. Stephanie: [distorted] I think we're losing our connection here. Yeah, sorry. Sorry, everybody who's listening. I'm sorry for the technology. It's so challenging sometimes to get the connection [inaudible] or Wi-Fi or whatever it is. I don't know how it works; it's like magic to me, so... [laughing] Well, I would like to thank everybody for being here today and to tell everyone how grateful I am, and I'm so sorry for Erin. I don't know what has happened. We lost Erin and it was so wonderful to have her here with us today to share her story, the challenges of [inaudible] all the way to adulthood without being diagnosed with CVI, growing up as a child undiagnosed with CVI, and just hear the same stories echoed internationally. Dagbjört is from Iceland; our guest Jonathan Mahy -- he is from U.K. This is not something that just happened to our family; this is actually quite common for people who have CVI to go for years without a diagnosis or to even be misdiagnosed, and maybe you would like to talk to that, Dagbjört. Would you like to talk to that issue? Dagbjört: What, being misdiagnosed? Stephanie: Can you hear me? [sound dropping out] Do you feel -- were you misdiagnosed, or no? Dagbjört: So, what happened to me was that I was -- when I was five years old, I was diagnosed on the autistic spectrum. I've read a lot about this particular disorder I was diagnosed with. Not a lot of these symptoms related to me. There are some, sure, and it wasn't out of thin air that they grabbed "autistic spectrum" -- condition that they labeled me with -- Stephanie: Mhmm. Dagbjört: -- because I have some symptoms of being on that spectrum. But I think that 80% of it was CVI all the time, so -- Jonathan: Yeah, can I say as well that I have -- well, I was told at the -- when I went to the CVI conference in Huragate with Gordon Dunn -- with Professor Gordon Dunn -- that in small parts, sometimes CVI does -- does -- some of the symptoms -- some of the symptoms -- it can be similar to autism. So that can sometimes be something that they'll say, so -- yeah, I've heard that. I've heard that before, myself. Dagbjört: Yeah. There's -- there's a comment from my aunt -- Stephanie: What does it say? Dagbjört : -- that's saying that -- it says that when I was a kid that I would have benefited from a better-organized room. That's true, because I never did find any single thing in my room. Stephanie: Yeah, no, organization and to know that things will always be in the same place. So this kind of comes back to like, tips for parents. Thank you, Alan Stevenson, that's a wonderful comment. So if you're a parent watching -- [speech muffled and overlapping] Stephanie: What's that? Dagbjört: I don't know if people can hear us, actually. Jonathan: I think it's actually -- it always -- it was always like an issue for me, as well -- I am -- when my mum first took me for an assessment at the Westminster school, she said that -- to the -- to the -- to my assessor in that meeting -- 'cause it was a [inaudible] -- she said on the first day to my assessor that, "Oh, he -- Jonathan's always so fussy; if one thing is out of place in his room" -- she said -- "It's not because he's fussy, it's because he's visually impaired". So that made -- so that made sense, yeah. Stephanie: Yeah, because you had to keep it in the same place every time so you could find it. So, parents of children who have CVI, you know, always keep things in the same places for your child so they can always find it in the same place. That's a huge tip, thank you for saying that, Jonathan. That's a great [inaudible]. Jonathan: I'll tell you another thing -- I'll tell you another thing as well -- it's -- tell you another thing -- I notice this when I go away anywhere. You know, and I -- you know, getting -- you know, knowing what my clothes are, and you know, just -- I -- I struggle -- I struggle, you know, you know, identifying clothing as well. I don't know that's a problem for you, but it's a problem for me. Dagbjört: Yeah, it's a big problem for me too. I have -- I have difficulty finding all the things and that's -- but the big problem is that I also have difficulty actually organizing them. Jonathan: Yeah, that's the same -- Dagbjört: [inaudible] visually fatigue. Stephanie: Then you can't see at all. And that's a great topic, too. We are running out of time but a whole topic of visual fatigue -- the idea that -- and this is just simply a fact. People who have CVI -- their vision fatigues, which means that they actually -- their vision worsens, or in the case of my son Sebastian, he goes completely blind when he gets overheated, when he is sick, when he is over-tired. People with CVI actually can become completely blind from this and it happens -- can happen on a daily basis minute-to-minute, from moment to moment. It's just -- it's really is a struggle and for people, and for professionals in the field to understand that just because somebody can see and do something in one moment doesn't mean that half an hour later they won't be able to continue to do it. Dagbjört: Exactly. Stephanie: So, I hope everybody found today to be informative and helpful, and I want to thank Dagbjört and Erin Jepsen and I'm so sorry we lost you -- it was so good to have you here for the brief time that we had you -- and Jonathan Mahy, thank you for taking time out of your busy days to join us. I'm so grateful to hear your -- Jonathan: That's okay, I -- Stephanie: -- voices to talk about CVI. Jonathan: I'd like to join in again on these; it's great. Stephanie: Thank you, I'll have you back! Absolutely! We intend to do these every two weeks so I would love to have you back as a guest. Thanks for joining us. For those of you listening, I just wanted to let you know tomorrow I will be talking with the wonderful Kristin Smedley who is the author of "Thriving Blind", and Kristin Smedley has two sons adult with a very rare form of ocular blindness -- it's not CVI -- but she raised them to be successful and she talks about high expectations and how children and adults with CVI can thrive if they're just simply given small supports that they need, for example getting diagnosed they're before 24 years old, or 16, or however old, and then getting orientation and mobility lessons, access to braille -- Dagbjört: Woohoo! Stephanie: -- all kinds of, like, typical things that visually impaired are [inaudible] to need. So I'm very excited. That will be tomorrow at 5:45 PM CST and you can find the lin to that if you go to the "Thriving Blind" website and just "like" the web--"like" the page. You will get a notification and a reminder to come and hear our conversation. We'll be talking about my book "Eyeless Mind" and I just want to thank everybody. I don't know if you can see the picture -- here we go -- where's the camera? [laughing] Thank you, everybody, for being here today and we're so grateful to everybody. Thank you, Dagbjört. Thank you, Erin -- Dagbjört : You're welcome. Stephanie: -- and thank you, Jonathan. And hopefully we'll see you all back soon! Have a great day! Jonathan: I'd love to come back anytime! Dagbjört: [muffled] -- please keep going on in the comments, okay? Bye! Jonathan: Bye! Stephanie: Thank you, guys!