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Author and Advocate, Stephanie Duesing joins Jeff Thompson in the Blind Abilities Studio to share her journey into Cerebral/Cortical Visual Impairment (CVI) – The Leading cause of Blindness in the Developed World.
Her son Sebastian was finally diagnosed at age 15 after numerous Doctors from across the States offered no explanation for her son’s condition. Learn about their journey and how CVI is now the leading cause of Blindness in the developed world, yet probably the least understood,
Message from Stephanie Duesing:
“My name is Stephanie Duesing and I am a former music teacher who made a major medical discovery in the field of visual neuroplasticity.
I am the author of Eyeless Mind: A Memoir About Seeing and Being Seen, which I’m incredibly honored to say was a finalist in the Chicago Writers Association Book of the Year Contest in 2020.
In January of 2017, I discovered that my straight A honor student, genius artist, and water polo-playing son Sebastian was almost completely blind and no one knew, not even Sebastian himself. He was fifteen and just about to enroll in driver’s ed. We were devastated. Terrified for my son’s safety, overwhelmed with guilt at not knowing that my own son was blind, and utterly baffled at the impossibility of the situation, we embarked on a journey to find answers.
My son 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. Dr. Lotfi Merabet, the director of the Harvard CVI Neuroplasticity research study, associate scientist at Massachusetts Eye and Ear, and associate professor of ophthalmology at Harvard Medical School, published a paper on Sebastian’s verbal mediation to process his vision in collaboration with Dr. Barry Kran, the director of optometrics at the New England Eye Low Vision Clinic at the Perkins School for the Blind in Neurobiologia.
Although Sebastian’s neuroplastic adaptation to his neurological visual impairment is unique, his actual condition is common and is poorly understood. Cerebral/cortical visual impairment (CVI) was identified as the number one cause of visual impairment in the developed world more than ten years ago and still doesn’t have a diagnostic code. There are tens of thousands of people in the U.S alone who have CVI, and they are struggling to gain access to diagnostic, educational, and habilitative services just like we did.
Although CVI is poorly understood, there are decades of research demonstrating the tremendous neurological benefits of music and arts therapies for people who have had brain injuries. Sebastian quite literally taught himself to see with art. He draws and paints with almost photographic realism when he wants to, and he is almost completely blind.
I have beautiful endorsements from the best vision and brain specialists in the world which you can read on my website.
I speak on the following topics:
*Cerebral/Cortical Visual Impairment (CVI) and neuroplastic verbal meditation as a compensatory strategy
*CVI and the power of the arts to heal
*Overcoming childhood abuse and the importance of changing generational abuse patterns through conscious actions.
Helpful links from Stephanie Duesing:
National Eye Institute – Vision loss in children whose eyesight may be 20/20 requires new diagnostic and teaching strategies
American Printing House: Vision and the Brain: Understanding Cerebral Visual Impairment in Children
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If you reside in Minnesota, and you would like to know more about Transition Services from State Services contact Pre-ETS Program and Transition Services Manager Sheila Koenig by email or contact her via phone at 651-539-2361.
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Full Transcript
Stephanie:
My son was born with CVI and like many people, he did not get diagnosed. He was repeatedly misdiagnosed, actually, until he was 15.
Jeff:
Please welcome author and CVI advocate Stephanie Duesing.
Stephanie:
It’s like they’ve never been there before because they have no ability to recognize their surroundings.
Jeff:
Sharing her journey and experience through her son Sebastian’s 15 year determination and prognosis of CVI.
Stephanie:
I don’t know how many doctor’s appointments and never even heard the words cerebral visual impairment or cortical visual impairment from any of the doctors.
Jeff:
Stephanie speaks to families nearly on a daily basis and learn what she suggests if you suspect CVI in your child.
Stephanie:
And we know now, of course, that the reason he cried at drop-off was because he couldn’t recognize the teacher. He couldn’t recognize the other kids. He couldn’t recognize the environment. I mean, he’s blind, my kid is blind.
Jeff:
And without further ado, here’s Stephanie Duesing. Hope you enjoy.
Stephanie:
Their kids have obvious CVI, unlike my son for whom it wasn’t a visible disability, and even people who have obvious CVI, it’s ridiculous the struggles these families go through just to get basic services.
Jeff:
Welcome to Blind Abilities. I’m Jeff Thompson. Today in the studio. We have Stephanie Duesing and she’s the author of the book Eyeless Mind: A Memoir about Seeing and Being Seen. The topic is on CVI, which is cortical visual impairment, where the brain is damaged and the eyes are fine, and it’s just hard to pinpoint this prognosis, CVI, but through her journey, through her son Sebastian, Stephanie has made headway and actually determining what Sebastian has been going through. Stephanie, thank you so much for being here on Blind Abilities.
Stephanie:
Thank you, Jeff. I’m so grateful for the opportunity to be here and talk with you and to talk about CVI, otherwise known as cerebral/cortical visual impairment. CVI, we CVI moms often call CVI the common disability that no one’s ever heard of. It was actually identified as the number one cause of visual impairment in the developed world more than 10 years ago, and it still doesn’t have a diagnostic code. Since we came forward with our story in about, I think it was 2018, there’s been some progress and the National Institute of Health has since recognized CVI as being a topic of further research, which is good. And also they have recognized it as the number one cause of visual impairment, so we have made quite a bit of progress in raising awareness about CVI, and I can’t take any credit for what the NIH has done, but I have spent quite a bit of my time trying to educate doctors and families and the general public, teachers of the visually impaired about what CVI really is. Thanks so much for having me today.
Jeff:
Well, thanks for taking the time to come in and educate us a little bit about CVI. This is like a little secret group or something because I’ve heard of it. I’ve read about it. And mostly it’s parents talking about their infant children, and that’s usually when the problems are kind of diagnosed, I don’t want to use that word too strongly, or encountered, and they start the process of trying to figure out what’s wrong, because like I said, it’s not an ocular thing. It’s a brain thing, but there’s some talk about this plasticity, this neuroplasticity, it seems like the brain starts remapping a little bit, so the person with CVI kind of covers for it, is that right?
Stephanie:
Well, I could only speak for our situation. So first I’d like to just say that CVI is definitely under researched and not well understood at all, or even known about by the general public. And you’re correct, neuroplasticity is a real thing. And what happened to our family is actually not uncommon. And you mentioned how, you know, you’re aware of it through families who have babies that have discovered that their babies have this issue, but in reality, it is actually not uncommon for people who have CVI to go for years misdiagnosed and undiagnosed, just like my son did. It is really common for people to go all the way till they are teenagers, even- I know several adults, legally blind and they didn’t get diagnosed until they were adults. And so it’s really a public health crisis. It is not just babies. You’re correct that it is caused by brain damage and that it can come at any time. You can get it from a stroke or from drowning, any type of situation where you have a lack of oxygen. So it’s a very big concern because of course we do see it in so many babies now because we have so many babies who- our NICU care has improved so much that we have many babies who didn’t used to survive these preemie, premature births that now do fortunately, and they often have cerebral palsy, they have epilepsy, and we’re seeing that many of them also have CVI as well. So my son, to get back to your question about neuroplasticity, my son was born with CVI and like many people, he did not get diagnosed. He was repeatedly misdiagnosed actually, until he was- we figured out what was going on when he was 15. So CVI is a brain-based vision impairment that is entirely different from ocular blindness. It has basically two parts to it. There’s the dorsal stream, and then there’s the ventral stream of the brain. More than 50% of our brains are used in visual processing. And the dorsal stream is the part of the visual processing that comes up the top of the brain, and it’s involved with things like spotting a distant target, finding a person in a crowded space, whereas the ventral stream of the brain, that part of the brain is involved in things like visual memory, perhaps like recognizing faces, which happens in the right fusiform gyrus of the brain, recognizing places, objects, biological forms, words, letters, numbers, symbols, all of those things. And so every person who has CVI will have commonalities in some of the symptoms that they have, but they also can have widely varying symptoms because it all depends on where the brain damage is. So for example, my son has something called prosopagnosia, which is a difficulty recognizing faces, actually an inability to recognize faces. And it’s because he has brain damage in the right fusiform gyrus of his brain, which is on the right side, kind of here behind your ear on the right side. And that’s where recognizing faces takes place in the brain. And so my son, we were literally going through old photos and discovered that he couldn’t recognize his own face or anybody else’s. And that came as a huge surprise to us because my son draws and paints with photographic realism when he wants to, he draws and paints faces beautifully when he wants to. And so we had absolutely no idea that he had this inability to recognize faces. The very next day, we discovered that he taught himself to count his steps and turns to navigate, and that was terrifying because now we realized that he- we could not send my straight A honors student off to college and expect him to be able to navigate an unfamiliar college campus somewhere by counting his steps and turns without some professional training and orientation and mobility. What we discovered over the next several months was that my son actually has a unique neuroplastic adaptation to a CVI, that he 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. My characteristics are tall blonde glasses. And when my son thinks those words to himself, he literally gets a momentary glimpse of what I look like. So to weave back to your question about neuroplasticity, yes, every person has neuroplasticity. We all have it. We experience it every day as we learn new things. It’s not a magic thing that happens only to people who have brain damage. It’s a normal thing. It’s a normal part of human experience and it’s basically learning. And so what happens is, as we learn, our brains form new connections, and what Sebastian did, as a very small child, my child was obsessed with art, and he spent hours every day drawing, painting, sculpting from the time he was tiny. When he was a toddler, he was in the bathtub doing, you know, the paints, you put them on your skin, you know the baby safe paints that you could do in the bathtub.
Jeff:
Sure. It’s been a while.
Stephanie:
It’s been a while, and I know I actually had a minor stroke when Sebastian was born, which is why he has CVI and I have problems with word recall sometimes. So yeah, anyway, so long story short, neuroplasticity is a part of everyday life for everyone. And what happened with my son is that because he developed with the drawing and the painting, he memorized all of the verbal characteristics of everything around him. So though he can’t recognize objects like a basketball the way we do, he can identify a basketball because he knows that a round thing that’s orange that has stripes on it is probably a basketball. And he uses every tool at his disposal, just like people with ocular blindness, right? I mean, you use every tool at your disposal, the smell, the logic, right. You know a round thing in your kitchen that’s the size of a softball is probably an orange or an apple. It’s probably not a softball in your kitchen.
Like, I don’t know, maybe it is a softball in your kitchen, but you know what I mean? You use logic and that’s what Sebastian does, but he also has this ability to get this little flash of understanding, visual understanding of what a thing is when he thinks those words. But what it didn’t do is that neuroplasticity did not cure my son’s CVI, it concealed it. And so my son passed for typically sighted for his entire life. He would still pass now. And you’ve just couldn’t tell by looking at him, by talking with him, his academic record, he was a straight A honor student. He has blind sight, so he has the ability to move through space without bumping into things. And if you don’t know what blind sight is, there’s a wonderful article on NPR called “The Blind Woman Who Saw Rain.” And it talks about another woman with CVI who lost all light perception due to a stroke. And she discovered at some point that she was able to see the rain as it came down, she could see the motion of the rain, even though she couldn’t see light, she could still see motion and motion is processed in the back of our brains. And so if that area of the brain is undamaged, you can still, even though you can’t see light or color or anything else, some people, there are people walking around right now that can still see motion. And my son has really well-developed motion perception, and that is what is called blind sight. He’s able to walk through this world without crashing into things. And he was actually on the water polo team at his high school before we discovered that he had CVI.
Jeff:
With being able to determine motion and travel through without bumping into things, why was it important that he received orientation and mobility training?
Stephanie:
Thank you. That is such an important question, and I’m so glad that you asked that. And this is something that I’ve really worked hard to raise awareness about. So the ability to move through space without bumping into objects does not mean that a person can actually navigate from, say, your home to Starbucks. In order to successfully and safely navigate to places, you have to have the ability to create mental maps of the world. And the way that human beings create mental maps of the world is by the use of landmarks. They’re able to picture their environment and then they have an idea of where point A is, what it looks like, what the things around it look like, and where it is mentally in comparison to point B. And that’s creating a mental map. For a person like my son who has CVI and also has topographical agnosia, those people, my son for example, cannot do that. Everywhere they go it’s like they’ve never been there before because they have no ability to recognize their surroundings. Nothing ever looks familiar to them. No matter how many times they go there, because all they are perceiving is, for my son’s sake, I can’t speak for everyone with CVI because everyone has a different experience. But for my son’s sake, his blindness is like being in this colorful fog. It is colorful and blurry and he can see light and motion, but there’s not a lot of useful information coming in there other than the fact that he could see if something’s coming at him, but he doesn’t know what it is that’s coming at him unless it’s coming slow enough for him to process. So there’s no way to actually have a mental image of where something is in comparison to where something else is.
Jeff:
And so how did you sell this to the orientation and mobility instructor? How did they receive Sebastian?
Stephanie:
So the only reason we got help was because of Lucas Frank at the Seeing Eye, and I can never stop being grateful for how incredibly lucky we were that we came across Lucas, because I reached out to the Seeing Eye within days of figuring out that Sebastian had topographical agnosia. I knew nothing about guide dogs. I knew nothing about CVI. I knew nothing about blindness, but I just thought, I know my son is counting his steps and turns in our own home and that’s not normal, and maybe a guide dog would help him. And so I reached out to the Seeing Eye and they were very kind, and I talked with Pauline Surf and she was very kind on the phone. And she, we talked about the fact that Sebastian wasn’t bumping into things, and she explained that a guide dog probably wouldn’t be a good fit because the guide dog’s job is to keep you from bumping into things. And if Sebastian’s not bumping into things, he wouldn’t need it, and I was like, oh, that makes total sense. So I’m like, yes, I understand that. And I never thought I would hear from them again. I just thought it was very nice. And we went about our lives, you know, trying to get a diagnosis for Sebastian, but within a day or two, I got a call from Lucas and Lucas spent quite a bit of time on the phone with me. And then he talked to Sebastian for quite awhile and it was very nice to be taken seriously by someone, because we had by this point already had a doctor’s appointment or two under our belts, and we’re realizing that the doctors didn’t know anything about this. I mean, we didn’t have any idea how difficult it was going to be to get a diagnosis at that point. But I was beginning to get the sense that it wasn’t going to be easy. And so it was amazing to be taken seriously. And Lucas was very kind and he gave me some suggestions on some technology and that we should connect with the Chicago Lighthouse. And he gave me the names of the technology people there to connect with, Tom Persky. And then I was just so touched. I was like, that was the nicest thing in the world. I’m like, thank you. And so that was the end of that phone call. And I’ve made the contacts with Tom Persky at the Lighthouse for the blind, and I never thought I would hear from Lucas again, because I’ve just thought that was just a lovely thing to do. So we went on our journey and went from doctor to doctor, to doctor, to doctor, to doctor, to doctor. And the very first doctor we went to, I was using the correct medical terminology to describe my son’s symptoms, and the doctor was a neuropsychologist and he just said, I can’t help you and I don’t know anyone who can, good luck with that.
Jeff:
Oh, wow.
Stephanie:
And it just got worse and worse and worse, because CVI doesn’t have a diagnostic code. The doctor’s had no training in it, so it was horrible. And so after quite a few horrible doctor’s appointments, I can’t remember, oh, I got a phone call from Lucas. He said, I’m going to be in Chicago for a conference, would you like to have dinner, and boy at that point did I ever want to have dinner with Lucas Frank. So, yeah, we had dinner together and he did an informal orientation and mobility assessment with Sebastian in the restaurant and also out in the parking lot. And he, I mean, he saw what I saw, that navigating by counting your steps and turns is not typical for a typically sighted person, right? So there’s something wrong. And so that was really, it was just so gratifying to have somebody see what I saw, you know, to have somebody understand what I was understanding, that there was something wrong here and to take it seriously. And so Lucas continued to try to connect us and we continued our battle to get a diagnosis and it just kept getting worse and worse. And then finally after a really horrible experience with a doctor, we came home, we traveled across the country trying to find someone that would help us, and I got home and it was- of course, I mean, we were totally labeled crazy by the medical establishment. And I just thought I have no idea, no idea where else to turn. I’ve tried everything. And Lucas called. It was amazing. And he said, I talked with Jim D’Aramaic from the- he’s the head of rehabilitation at the Johns Hopkins Eye Center. Lucas said, he wants to talk to you now. And so I called Jim D’Aramaic. And we spoke and he said, I have this course on CVI and we’re going to donate it to you. So they donated a $150 course on CVI and it was taught by Gordon Dutton, Professor Gordon Dutton in Scotland, and it confirmed everything I knew about Sebastian. And it was amazing to me because it was now about six months after we discovered Sebastian’s CVI. And it was the very first time that I was actually hearing the words cerebral/cortical visual impairment. We’d gone to I don’t know how many doctor’s appointments and never even heard the words cerebral visual impairment or cortical visual impairment from any of the doctors. And I discovered that what my son had was really common, and it was just so shocking. I don’t even know how to describe that feeling where you’re like all this time, we’ve been told that what my son had was so incredibly rare. There was no possible way my son could have it. And then I take this course that’s like, oh yeah, it’s actually the number one cause of visual impairment in the developed world.
Jeff:
Sebastian can read print.
Stephanie:
Yes he can. So people who have CVI often have normal acuity, it can also be where people have CVI, they can also have ocular vision impairments at the same time. It depends on the person, but it is quite common for people who have CVI to have normal acuity. And Sebastian happens to have- incredibly lucky, he has a visual access to numeracy and literacy because the parts of the brain that recognize letters and words and numbers and symbols are not damaged. So the only things that Sebastian can recognize the way that typically sighted people do are words, letters, numbers, and simple shapes, actually simple shapes he does differently too. He uses something called pantomiming to recognize shapes, but long story short, my son taught himself to read when he was two and a half. And he was a straight A honor student. He actually skipped a grade and he was absolutely brilliant at math. And we had absolutely no idea there was any type of disability whatsoever, because there was no way to tell, academically, socially, physically, nothing. So CVI is actually often an invisible disability.
Jeff:
I read somewhere where Sebastian said a hexagon was a tough one to describe.
Stephanie:
Well, yeah. So Sebastian uses something called pantomiming to recognize shapes. And again, I’ll refer you back to that NPR article, “The Woman Who Saw Rain.” So pantomiming is, for Sebastian for some reason he’s able to create a mental image of simple shapes if he moves, or if he thinks about moving any part of his body in that shape. So if he thinks about moving his hand in the shape of a triangle, he can create a mental image of a triangle, but that’s the only way he can do that.
Jeff:
What was it like as a parent becoming, oh, well, you wrote the book and you wrote a paper, becoming a specialist or an expert on something that the medical field did not even really understand yet?
Stephanie:
Well, I have often described what happened to us like unraveling a sweater. So when we discovered Sebastian’s prosopagnosia, right, that just inspired all kinds of questions about visual memory. And I just kept tugging on that thread and we just talked and I just kept pulling. And the more we talked and the more I pulled on that thread of visual memory, the more we kept figuring out. And the more and more serious we realized his vision, his blindness, really was. And how incredibly well he had masqueraded as typically sighted because of the neuroplastic verbal visual processing that he had developed as a tiny, tiny toddler. I just describe it as like, just this discovery, this just, I don’t know, you just, if you unravel a sweater, when you just pull that thread in it more and more and more and more just keeps coming. And it was all just talking to my son, we figured it out with conversation and asking questions, asking my son, well, what can you picture? You know, I would tell him, you know, I can picture the Mona Lisa and he’d say, well, I can’t do that. Yeah. And I mean, and at the time I had never heard of prosopagnosia or CVI. So to me that was really shocking that he wasn’t able to do that. So I think one of my things that has been so important to me is what we discovered is in the medical and educational fields, no one wanted to listen to Sebastian talk about his own visual- his own functional vision. There was no, no interest whatsoever in hearing from a person who actually had CVI about what it was like to have CVI, because they weren’t even acknowledging that CVI existed. And so we’re just so grateful to Dr. Barry Cran at the Perkins School for the Blind and Dr. Lotfi Maribeth at the Harvard CVI neuro-plasticity research study, and so many others who actually were willing to listen. Because in my opinion, the people who are the experts of their functional vision are the people who have the functional vision. And rather than having like typically sighted so-called experts saying, well, CVI is this, and everyone who has CVI is like this, I think it’s really important that we start asking people with CVI, well, actually, what is it like for you? What can you picture? What can you see? What things are easy to see? What things are difficult to see? When can you not see at all? Instead of just having this cookie cutter approach, that everyone’s the same, because what we’re finding more and more, I think it’s Gordon Dutton, Professor Gordon Dutton says if you’ve met one person with, CVI, you have met one person with CVI, they are all different.
Jeff:
And when you were receiving cold shoulders from most of the specialists, the doctors out there, you found groups on Facebook and it was busy. There is a lot of people and CVI wasn’t something foreign to them.
Stephanie:
Right, exactly. And you know, I think this is the tragedy of the fact that our medical system is so compartmentalized. And so we aren’t having these conversations. Neurologists are not talking about this with optometrists and optometrists are not talking about this with neuropsychologists, everybody’s so compartmentalized, and so really, we need to have conversations amongst all of these different groups so that everyone is understanding what’s going on. Back when Sebastian was in third grade, his school came to us and told us that they could not meet his needs educationally in the grade he was in because he finished the fourth grade math book in the first quarter of third grade, without any help. We had no idea he’d even done it because I’m not a homework person. I don’t really believe in homework. So this was something he just did, and it was shocking news to me. Well, long story short, in order for him to do the grade skipping, he had to have a full neuro-psych eval and an IQ test. And what we saw on the neuro-psych eval was he who was extremely high in the verbal, and he was like upper-average in visual/spatial, which is generally tied with math ability. And so here I am at the office of the doctor who had administered the tests saying, okay, my son just finished the fourth grade math book, first quarter of third grade, without any help. Why is he comparatively low as like upper-average in visual spatial? If he is scoring like comparatively low in visual/spatial compared to his verbal, which is up at the very top with a big gap in between, what does that mean? And the doctor had no answer. The doctor just said, well, he’s not as smart as you think he is. That’s not an answer. The answer is there is a problem with his visual/spatial processing and maybe he might have CVI. That’s what the answer was, but no one knew that and no one told us that.
Jeff:
And seven years later you find out he has CVI.
Stephanie:
Right.
Jeff:
What a journey. I just want to say what a journey to go through those years, always questioning in your mind, something that he had probably had a hint at, or there’s something had to be an inkling of, but you couldn’t put your finger on it.
Stephanie:
Right, yeah, exactly. I really, really wish that we could get the message out to the mental health field that this is a huge issue because really the only real symptom that we had that there was anything wrong with Sebastian was what appeared to be mild separation anxiety in early childhood. He had mild separation anxiety, and he cried every day at drop-off for two years of preschool and every day of kindergarten, and he was social and he had friends and he was not bullied and he loved his teacher and he was extremely academic and he loved to learn and it made absolutely no sense. And I would ask the teachers, you know, why does he cry at drop-off? You know, like what’s going on? And I know he’s got his best friend there in preschool that he loves and, you know, they’re having a great time when they’re there and the teacher just said, it’s no big deal, you know, we just worry about the ones who can’t settle down. And we know now of course, that the reason he cried a drop-off was because he couldn’t recognize the teacher, he couldn’t recognize the other kids. He couldn’t recognize the environment. I mean, he’s blind, my kid is blind and it’s just horrifying to me that we had this and no one thought, oh, maybe he should be evaluated for CVI. Maybe he has CVI. Nobody told me, nobody even suggested it. You know? And it’s just so sad because I just think that there are countless people out there who are suffering from what everyone thinks is unexplained anxiety. In fact, we know that people with CVI are routinely misdiagnosed with- as emotionally disturbed. They’re routinely misdiagnosed as autistic, they’re often misdiagnosed as intellectually disabled. It’s terrible. And what they are is blind. They’re blind.
Jeff:
If a parent is concerned that their child may have CVI or has a lot of these other symptoms, where would you suggest for them to go look for information?
Stephanie:
Oh, there are some wonderful resources. First, if you think that your child might be having difficulties with CVI, I would go first to CVI Now at the Perkins School for the Blind, it’s very accessible and easy to understand, for a lay person to understand. So I would go to the Perkins School for the Blind website first, and then once you go there, I would then go to the CVI Scotland website for more in-depth information about it. Both of them are free. They’re both medically accurate and wonderful sources of factual information about CVI that you can get for free and connect with people. And then, you know, from there, if you need more information, there is a wonderful textbook for professionals out there. And for parents who want to delve into it, the textbook I would recommend is called Vision and the Brain: Understanding Cerebral Visual Impairment in Children by Amanda Lueck and Gordon Dutton. Yeah. I would start there.
Jeff:
Sebastian is in art school.
Stephanie:
He actually was, he’s made a major change and he’s gone into a STEM field, but yes, he actually got the Presidential Award and Scholarship to the School of the Art Institute in Chicago for art history. And he was there for his freshman year and over the course of the pandemic, he has transitioned into a different area of interest and he is pursuing something else.
Jeff:
Awesome.
Stephanie:
We’re very excited for him actually. He really is enjoying what he’s doing.
Jeff:
Stephanie Duesing, such an incredible journey.
Stephanie:
Thank you. I just wanted to thank you and say how incredibly grateful I am for this opportunity to talk about this and to help raise awareness about CVI. The discrimination against people who have it just breaks my heart because I’m in contact with families on an almost daily basis who are, their kids have obvious CVI, unlike my son for whom it was an invisible disability, and even people who have obvious CVI, it’s ridiculous the struggles these families go through just to get basic services. So, thank you.
Jeff:
Thank you, thank you for helping us bring awareness to CVI for those who really, like myself, did not know much about it at all.
Stephanie:
Well, I really am grateful for the opportunity, so thank you.
Jeff:
Such a journey, such a person, Stephanie Duesing. Thank you so much for bringing awareness to such a cause and be sure to check out the show notes to find the links that she provided, where you can find out more information about CVI, and please share and be part of helping Stephanie spread the awareness. Thanks for listening. A big shout out to Chee Chau for his beautiful music, you can follow Chee Chau on Twitter @lcheechau.
[Music] [Transition noise] -When we share
-What we see
-Through each other’s eyes…
[Multiple voices overlapping, in unison, to form a single sentence]
…We can then begin to bridge the gap between the limited expectations, and the realities of Blind Abilities.
Jeff:
For more podcasts with a blindness perspective, check us out on the web www.blindabilities.com, on Twitter @BlindAbilities, download our app from the app store, Blind Abilities, that’s two words, or send us an email at info@blindabilities.com. Thanks for listening.