Out of Sight: The Shocking Discovery of a Teen's Hidden Blindness

In this episode, Jess delves into the topic of Cortical Visual Impairment (CVI), a common yet underrecognized condition, through a conversation with Stephanie Deusing, a mother who discovered her son's almost complete blindness due to CVI only when he was 15. Despite a high IQ, academic excellence, and no visible signs of blindness, Stephanie shares the journey of realization, diagnosis struggles, and the extensive yet often dismissive medical consultations they endured. The discussion highlights CVI's prevalence, exceeding that of autism, and its symptoms like face blindness, navigational challenges, and misunderstandings within medical and educational systems. Stephanie emphasizes the importance of early music and movement for developmental support, the difficulties in obtaining a CVI diagnosis due to the lack of a diagnostic code, and the societal misconceptions about vision and blindness. She advocates for greater awareness, education, and research to support those affected by CVI.


00:00 Intro
02:58 Sebastian's Development and Gifts
05:41 Gifted but Wouldn't Talk about School
07:37 Anxiety as an Early Sign
10:28 The Subtle Sign her Son was Blind
20:45 The Realization
27:43 Getting a Diagnosis
35:00 Heat, Stress, Exhaustion Can Cause Full Blindiness
37:25 CVI is #1 Cause of Visual Impairment in Developed World
39:26 How Vision Works, & What is CVI
42:10 What Causes CVI?
49:17 What Signs Can Parents Look For?


Learn more about CVI:
https://www.nei.nih.gov/about/news-and-events/news/vision-loss-children-whose-eyesight-may-be-2020-requires-new-diagnostic-and-teaching-strategies

https://www.optometrytimes.com/view/getting-to-the-heart-of-pediatric-vision-loss-and-blindness

https://www.sciencedirect.com/science/article/abs/pii/S0028393221002359

https://www.npr.org/sections/health-shots/2014/05/26/314621545/the-blind-woman-who-sees-rain-but-not-her-daughters-smile#:~:text=You%20can%27t%20see%20a,stroke%20at%2029%20years%20old.

https://cviscotland.org/

https://www.perkins.org/our-work/cvi/

Connect with Stephanie: 
Stephanie’s Book, Eyeless Mind https://a.co/d/bnNLrxM
https://stephanieduesing.com/

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Transcript

0:00

Hey mamas, we're going to be doing a slightly different episode today. We're going to be talking with Stephanie deucing she despite having a terrible upbringing. Became a wonderful and attentive mother. And yet she did not notice that her son was blind until he was 15. He was excelling academically. He was high on the IQ charts. He was athletic. No signs of blindness until he was 15. So we're going to talk about that. The realization, the many, many doctor's appointments that her and her son went through together, where they were. Ignored dismissed, even shouted at. And then we'll talk about that. The diagnosis of CVI, cortical, visual impairment, and. It's a not so rare condition. And when I say not so rare, that's an understatement. It's actually more common than autism. And yet you've probably never heard of it. So let's just get into it. Okay. Stephanie, thank you so much for joining me. I, your family's journey is really incredible, and I'm honored to have you on the show to share it. I hope we can at least spread some more information about CVI, because it seems like a lot of people haven't heard of it, even doctors. Um, so I'm hoping you'll be able to share your journey and help other mothers not have to go through what you went through with your son. you, Jessica. It is so nice to meet you and I'm so grateful for this opportunity to be here today with you to talk about cerebral slash cortical visual impairment and, um, and just help raise awareness about this common but poorly understood disability. I loved how you talked about how even doctors don't seem to know about it and you're absolutely correct. Um, research shows that the vast majority of teachers, teachers have never heard of it. And in fact, we often call CVI the common disability that no one's ever heard of. And it's really sad because recent research is showing that one in 30 students in a regular education classroom have symptoms of CVI, making CVI more prevalent than autism. So this is a huge public health crisis. Research is showing that 20 percent or fewer of children who have CVI are currently diagnosed, meaning that 80 percent or more of them are undiagnosed and misdiagnosed, which is what happened to my son for years. So, I'm really grateful for this opportunity to be here today. Thank you so much. Sure. glad I can, glad I can help. So I know, I thought what we could do today is talk a little bit about your story and then CVI specifically, and then, round out with, with kind of some final things from your book. So I know we can't summarize your, your whole book here. Um, but I was thinking we could walk through some of the key points. So can you, can you talk about your son's childhood, maybe touching on his development, his transition to school and his early testing, uh, to start things off? So, my son's name is Sebastian. He's 22 right now. And, um, I almost died giving birth to him. He was born full term. I was diagnosed with preeclampsia three days before he was due. I went immediately to the hospital where they induced me and I coded from the epidural. My blood pressure crashed to 40 over 26. And I, um, the last thing I remember is the anesthesiologist in front of me saying, it's okay, close your eyes. Before I lost consciousness, I got the six inch needle of epinephrine to my heart and I was unconscious for about six hours of my labor. When I woke up, Sebastian, I, you know, I was paralyzed from the chest down. My husband was there the whole time, and according to my husband, he said there was no fetal distress because there was a fetal monitor. And so I did not have an emergency C section, and a couple hours later, I gave birth vaginally to Sebastian, and we were told we had a perfectly healthy baby. He had a 9 on his APGAR score, and we took him home from the hospital thinking we had a perfectly healthy baby. Sebastian had all normal developmental milestones and took the training wheels off of his bike when he was four, despite being almost completely blind. Sebastian, um, he was extremely verbal and extremely gifted. He started reading and writing at the age of two and a half. Um, I'm not a homework mom. I actually am a teacher and I have, I don't actually believe in homework before the age of 12. I've never seen any research supporting that homework is beneficial to children before the age of 12. And so my kid was not like a, You know, he wasn't pushed. So this was something he picked up on his own and he was reading and understanding those original Nancy Drew stories with the lawyerly language when he was four, those are chapter books. And I remember struggling with those when I was in second, third grade. So I was aware at the age of four that my son was way far ahead of where I was at his age. He was actually identified as very gifted as a kindergartner two years ahead of when the gifted identification process begins in his public school. That didn't usually start until second grade, but because he was reading and understanding chapter books and excelling in math and every, absolutely every aspect, he was identified. And his gifted teacher created a specific pullout program just for him as a kindergartner as a result. And so, um, when we got to, uh, I think it was in. Third grade? Yeah, he finished the fourth grade math book first quarter of third grade without any assistance. He did it without us even knowing he had done it. I found out about it from his gifted teacher who came running out of the school to tell me on a very cold winter day I didn't even know and I would never forget his math teacher at the meeting was like, well How did he know how to multiply and divide fractions? And I had no idea and my husband sat there for a moment and the thought and said, oh, yeah I showed him once last year. That's, that's crazy. The thing, the thing that was in, the thing that struck me too when I was reading your book is that your son wouldn't talk to you about school. So it's not, so like, in your home life you guys had a great relationship from, you know, reading your book and, like, you were very in tune with him. But when it came to him going to school he wouldn't tell you anything that went on. So you had to kind of rely on what you could hear from, you know, his teachers or other kids talking to him or something like that. Yes. And that was very concerning to me as a parent because he was so, so shut down about what was going on at school. And we knew he was extremely gifted. I purchased a book about. Gifted children, I can't, the name of it is escaping me right now, but they talked a lot about how kids with really high giftedness are often really frustrated, they're often bored, you know, they can have behavior problems because they're acting out, whereas we didn't see that with Sebastian, we didn't see behavior problems. But it was very clear to me that there was something not right at school. I just had absolutely no idea what it was, absolutely no idea because he had friends, he was very social and he had a lovely group of friends. So, he wasn't being bullied, he had friends, and he was academically soaring through everything, so it was kind of a mystery to me, like, what, what's wrong? It was actually, it wasn't kind of a mystery, it was a huge mystery that really, actually really concerned me. So. And there were, like, some points where you mentioned there seemed to be some, I don't know, anxiety, or he had difficulty when you dropped him off at school for a while. And again, that's just a thing that happens with a lot of kids. So I don't, you know, you wouldn't think that's a necessarily a red flag for anything, right? Right, and I'm so glad you brought that up, because although my son is almost completely blind, the only symptom that we ever had that there was something wrong was what appeared to be mostly mild separation anxiety. Mm hmm. At the beginning, right? So he, for two years of preschool, my son cried at drop off and most of kindergarten as well, even though my son has a fall birthday and is on the older side and was very socially mature and was great at making friends and had his best friends in his classes with him, you know? And so this was also a mystery, like why, why is my child crying at drop off when he's not the, he's not the one that you would think. Right. It didn't make any sense that he was crying a drop off. And we were repeatedly told both by medical professionals and by his teachers that he was fine because he very quickly calmed down. He very quickly calmed down. And so, and it was told repeatedly, we worry about the ones who can't settle down. And my son always settled down and so he tried to tell us for three solid years, two years of kindergarten and kindergarten, that he was terrified at being dropped off and we didn't know he was blind because CVI can be an entirely invisible disability and we had absolutely no idea there was anything wrong with his vision and so we didn't know that it was, he had a very rational reason to be afraid. And And so it was just brushed off as, well, some kids just do this because some kids just do. But now that we know that 1 in 30 students in a regular education classroom have symptoms of CVI, I would highly suspect that the reason some kids just do this is because they can't see. That's insane to So the way that you, you say it, you know, that they're blind or they can't see when they are able to move and kind of see things in front of them, or, you know, like they're not blind in the traditional sense of being blind. So it took me a while to wrap my head around what you meant by that. Um, but I think let's get to that in one minute. I wanted to just finish the story a little bit. So, um, things, so one note that was kind of important was that he got some testing. Um, I think it was during elementary or near middle school where, um, his verbal scores and his spatial scores weren't lining up correctly. Right. Is that, am I getting that right? Yeah. for anybody out there listening to this and is wondering whether your child might have CVI, um, So in third grade, when Sebastian finished the fourth grade math book, first quarter of third grade, the school came to us and told us that they could not meet his needs academically in the grade he was in and told us they wanted to promote him to the next grade. We actually fought the grade promotion for social reasons. We had no desire to separate my son from his close group of friends. We didn't actually know any of the kids in the grade above, so he didn't have any automatic friends that he could slip in with. It's just the way our neighborhood school works. Most of the kids who go to that school come from a different town. So like the actual neighborhood kids that we knew were in his grade and he was friends with them. So we have no desire to promote them. And to be totally honest, giftedness runs in my family and my sister skipped two grades and it did not turn out well when she went off to college at the age of 16. So this was not something that we sought. So we went through the process with the school trying to find alternatives for our son, and grade promotion ended up being the least bad of the three options that we were given. And we did it gradually over the course of the school year. And so he was able to kind of split his time in the morning with his third grade friends and then in the afternoon with the older kids. And then the following year when he went into fifth grade, he went full time in. So he had six months of time to get to know kids in the above grade. And he did right away. And for my son, grade promotion turned out to be a lifesaver for him. He needed it. He needed it. And so, and that was a wonderful thing for him. So, but it was done with a lot of conscious thought and preparation and careful consideration. One of the pieces that was required for grade promotion was to have neuropsych evaluation with IQ testing. And as you mentioned, Sebastian scores always in the 99th percentile in both, um, verbal and in math in all standardized testing. Sebastian excels in verbal and in math skills all the time, always has. And so when we had the IQ testing done, it was kind of a, well, it was really a mystery. in third grade because he scored in the very top again 99th percentile on verbal skills, but his visual spatial testing on the WISC score was just above average, which was quite a gap. And it did not mesh with what we were seeing with his math ability. And I, as an educator, had always been taught that the visual spatial skills were tied to math ability. And here's my son who's excelling at math. Without any preparation, without any coaching, he's just doing it all on his own, and his visual spatial scores are low. And you have to remember, well, I haven't mentioned this yet, but I had never ever heard of CVI in 2017. I, I heard about it for the very first time in 2017, so I had no idea anything was wrong with his vision. I just had this weird score that wasn't matching how, what his actual performance is. And when I asked the person. The professional who administered what, you know, the score about this discrepancy, and their answer was just very dismissive. He's just not as smart as you think he is. Right. And like, I think we were perceived as those aggressive parents who just wanted to push our kids when in reality, we were the very careful parents trying our best to protect our child and find a solution for a child who actually needed help, needed something. So we were wrongly perceived and so we were dismissed and we never got any answers whatsoever on this discrepancy. So we just walked out of the office going, okay, well, that's weird, Yeah. And it looks like he got the grade promotion and then he kind of came alive after that a little bit more and started enjoying school and sharing it with you and things like that. Well, and also, if you know anything about grade promotion in the U. S., you know it's rare. And you know that they scrutinize every single aspect of your child's development academically, socially, physically, emotionally. They even look at, you know, their placement in the family, the birth order matters. They look at all of that. And Sebastian sailed through the grade promotion process without raising a single alarm. He was listed as very athletic by his PE teacher. My blind son was listed as very athletic by his PE teacher. Because he was right, so nobody knew and I'll be very honest here, not one single person, not one doctor, teacher, friend, family member, acquaintance, waitress, stranger on the street, not one single person ever came up to us ever and said they thought there was anything wrong with my son ever, It was kind of the opposite. He was, he was like excelling at everything. Yeah. Yes. Right. He was excelling at everything he did and there was no clue. And so when I talk about CVI, we talk about how we have one in 30 students in a regular education classroom having symptoms of CVI. I'm here today to tell you if my son, who is almost entirely blind, can be walking around and looking 100 percent typically sighted. Then anybody can be, anybody can be, it is an invisible disability for a lot of people. And so it's very important for people to know that stereotypes about ocular blindness do not apply to CVI. And I loved how you talked about that, you know, it's not, it's not like ocular blindness. Ocular blindness is caused by damage to the eye and to the optic nerve. And that's what people, typical, neurotypical, and typically sighted people think about when they think about being blind. They imagine that everything is dark. But the reality is the vast majority of people who have ocular forms of blindness have some residual vision. It might just be light perception. It might be some slice of their visual field that they have left. And they use what little vision that they have just be just as we do, right? I mean, if they have it, they use it to the best of their ability because they can't turn it off. Right? So it's really important when we talk about CVI to separate what you think you know about blindness, which is often the stereotype about everything being blind, which isn't even true. Everything being dark. Sorry, I misspoke there. Right. And then CBI, which is completely different. And if it's okay with you, I'd like to take a minute to talk about what CBI actually is. Sure. Um, I was going to go into how you figured it out and then go Oh, sure. Yeah. I'm happy to, happy to go there. Um, So it seemed like things, things changed when he got a concussion, um, and that kind of sent you on a path. Can you talk about that? Sure. Yeah. And I love that you read the book and know the story. You are so well prepared and I just want to thank you so much for that. It's wonderful to talk to someone who really understands our journey. Oh, no problem. so Sebastian went off to high school, was in all honors classes and AP classes and was excelling. He and his friends joined the water polo team and the diving team. And he's a very competitive kid, even though he was not on the swim team prior to this. And so he was in gym class, all the sophomores have to take swim in gym. And so he was racing against a kid on the swim team and a warmup in gym class. And he cracked his head on the edge of the pool doing a flip turn. and got quite a severe concussion that did not heal up right away. It was actually going on for several months. And so we actually were told we needed to have another neuropsych evaluation done to check for brain damage because it was such a severe concussion. And so this was his sophomore year. I think he was 15 years old. And so we went in and Sebastian had another neuropsych evaluation with cognitive testing. And again, Sebastian scored at the very top on the verbal portion of the IQ test. He scored a perfect 150. And then this time his visual spatial scores had dropped down to borderline impaired. And so we had this gigantic gap of more than 20 points between where he was verbally and where he was visually spatially. And again, we have a child who is taking AP Calculus and, and flying through it without any visible effort on his part. Yeah. So, the, the achievement is not matching the, the testing. There's this gap. And, again, questions arose when I asked the neuropsychologist who administered the test. He said, well, um, it's possible he might have, um, non, nonverbal learning disability. And so I had never heard of nonverbal learning disability. So I was like, well, what on earth is that? And how on earth could my son have a disability? When where's the disability, Yeah. right? Where, where's the disability? He's athletic. He's intellectual. He's academically able in every area, right? Where, where's the disability? This makes no sense. And of course, being a caring mom, I immediately got the one textbook I could find about MVLD. and read the whole thing and said, Nope, this does not match my son. So, amazing the lengths that mothers go to. You like, you don't know what you have in you till you're a mom. And it's really inspiring to see people like you, the way that you fought for your, for your son Thank you. I really appreciate that. Yeah, so that concussion was the catalyst for us asking a lot of questions to Sebastian about because we, he was, we were seeing this low score on visual spatial ability, we started talking about vision and visual spatial things. And so to answer your question about how we figured out that Sebastian had CVI, Just coincidentally, we happen to be going through old photos and I am not a crafty mom. I am super proud of the fact that I managed to make my son a baby book and like, that's it ever. I don't think I'm ever going to make another album. I just can't do it. So you. I'm with you. yeah, so I had finished his baby book when he was like two and then never done another thing. Never touched the pictures again. And, um, we were going through pictures we hadn't looked at for years, and we were specifically looking at Sebastian's baby pictures. And, um, he's an only child. So we were looking at pictures of him, you know, and, um, and I was narrating to him about who was in the pictures because we have family all over the place and a lot of people we don't see regularly, so there's a lot of people who wouldn't necessarily remember. So I was saying things like, Oh, look, there you are with your cousins from Canada that we haven't seen for seven years and Oh, look, there you are with your, you know, whatever neighbors from the town we used to live in when you were two. You know, and, um, we've been doing that for half an hour and my brilliant, extremely artistic son who can draw and paint faces and everything else that interests him with photographic realism when he wants to. And for half an hour, my son's been looking at pictures of his own face as a baby, and we kind of migrated up into the toddler preschool years. And an adorable picture of him popped up on the screen, and I said, Oh, look, who's that? And there were crickets. And finally, he said, How should I know? In 2017, I had never heard of CVI in 2017. I had never heard of face blindness, which is called Pro Soap agnosia. I didn't know that it was possible in 2017 for a human being to be face blind. Yeah. never heard of it. And so all the hair on my back and my arms just stood up because here's my son who can draw and paint gorgeous, realistic faces, obviously not recognizing his own, and that was just. bizarre to me at that time. And so I turned to him and I said, well, what do you mean? That's you? And he said, if you say so, That's terrifying. it was, it was so strange. I mean, I still get goosebumps when I tell this story because it was, I didn't know it was possible. I couldn't even imagine it at the time. I'd never heard of this. And so this happened to be. I started to just quiz him about other people in the photos. And remember my son's brilliant, right? So there's myself, my husband, younger, thinner, less gray hair, but still obviously us, you know, and my son, I'm guessing, I'm like, who is this? Who is this? Who is this? And my son is very obviously guessing. He's guessing accurately because he's so smart, but he's guessing. It's obvious that he doesn't just immediately know. And so that's when I'm like, there's something wrong here. And I was just determined to figure it out. Like there's something wrong here. I have to figure out what this is. It was right at bedtime. Everybody else went to bed and I spent the next four hours on my phone. Putting in every kind of search word I could think of for facial problems with facial recognition and back in 2017 there was so Little factual information about it that I could find it took four hours of sifting through stuff about facial recognition Software right when I finally got the right keywords when it brought up prosopagnosia face blindness And I didn't know this at the time, but the National Institute of Health back in 2017 had incorrect information about it. But I didn't know it was wrong. And according to the National Institutes of Health in 2017, it said that prosopagnosia was a real condition, but it was very, very rare. And so here it is two in the morning. I'm like, aha, right. We know what it is. It's, he's got some really rare quirk and okay, it's real. So that's satisfied me. I'm like, I know what this is. Not a big deal, right? It's just a quirk. You know, it's a rare thing. It's not a quirk. It's obviously not hampering him, right? So big deal, right? And so I went to bed. I woke up my husband at 2 o'clock in the morning. It was like, I figured it out. I figured out what's wrong. And he was like, uh, I went back to sleep. Yeah. And then the very next day we discovered that Sebastian had taught himself to navigate by counting his steps and turns and had been navigating our own home that way his entire life without anybody knowing. And that's a different thing, right, that's a different thing than face blindness. Yes, Sebastian also has a condition, a symptom of CVI. These are all possible symptoms of CVI. Every person who has CVI is different. They don't all have face blindness, just like they don't all have topographic lagnosia. Everybody's different. So, Sebastian also has one of his many symptoms is topographic lagnosia, which is an ability to recognize his surroundings. And what that means is he's not forming visual memories of anything that's around him. So every time he walks into his own home or his own bedroom, nothing ever looks familiar because the brain is literally not recording that information. And so there are no visual landmarks of anything ever. It is impossible for people who have topographic lagnosia to form visual maps of their world. So they cannot navigate visually because they have no mental map. visually of where things are. So in the door and he doesn't know that there's, you know, XYZ furniture around. He just has plotted a course in his head of how to get to his bedroom or something, right? when you think about, like, when you watch Dancing with the Stars and choreography, right? Those, those dancers have those routines memorized. They're not, they don't have to think every single step it's in their body. That's called haptic memory. Haptic memory is your body memory of movement. And so Sebastian actually encodes in his haptic memory All of this familiar roots, like his, he knows exactly how many steps it is. In fact, he feels it in his shoulders when he needs to turn. Right in a familiar place that he traveled all the time like in his home. So, Interesting. So you guys figured out what he had and then he went on this saga of trying to get someone to give you a diagnosis so that you could get help. Um, you know, with the types of services and things that a blind person, like, you know, using a cane or how to navigate and things like that, you couldn't get access to those because you couldn't get a diagnosis, right? Can you talk us through that? Because like, it looks like when, when you go through the book, it, You feel like it must be years of your life you spent going to these doctors, but it actually wasn't that long, but it was a lot of doctors. And you went through some really intense moments with them. I've never had a doctor shout at me. Um, so I can't, I, the stuff you went through, I can't even imagine it. So do you want to just give the audience a quick, um, overview or summary of, of how that looked for you guys? Thank you for your kind words. That really means a lot to me It took us 15 months from the time we discovered Sebastian had CVI until the time we got him diagnosed. We saw optometrists, neuro optometrists, ophthalmologists, neuro ophthalmologists, neurologists, neuropsychologists, The list goes on, and we were repeatedly verbally and emotionally abused. I was physically threatened by a doctor I had never even met, who walked into the exam room and put his fist in my face and without introducing myself screamed at me and put his fist in my face in front of my son. It was horrifying what we went through. And so, um, I actually, my son and I both have PTSD as a result from the, um, medical malpractice and abuse that we experienced trying to get a diagnosis the number one cause of visual impairment in the developed world. This is a common visual impairment. It is common. And the craziness surrounding all of this is just because we don't have a diagnostic code. But to get back to what you were saying, I didn't know that we were going to have this difficulty getting a diagnosis, right, when we first discovered Sebastian had it. And because I had been doing the research the night we discovered the face blindness, I already knew that, um, people who have face blindness very often also have topographic plagnosia. Those two symptoms of CVI are very closely linked. It's very common for people to have both. Because facial recognition takes place in the right fusiform gyrus of the brain. So if you take your right hand and touch above and behind your right ear, that's where the right fusiform gyrus of the brain is. And so if you have damage to that part of the brain, you're very likely to be face blind. And the part of the brain that recognizes environments is right close by there. And so the reason those two things are linked is because if one of them is damaged, it's very often that the other one is too. So, I already knew and I think that helped me to understand that Sebastian had topographical agnosia because I had already read the night before that people who have face blindness are often have this too and then when we figured that everything out it's like, Oh, Oh, and so my initial feeling when we first figured out that Sebastian was face blind was just like, well, it's a very weird and rare quirk, but it's not a big deal. But once we realized that Sebastian was navigating like an ocularly blind person would, that's when I became very afraid for his safety. Because Sebastian is very academically able and very, very artistically gifted. And he was planning to go off to the School of the Art Institute to study art in college and live in the city of Chicago. And I didn't know if my son could ever drive. I didn't know if my son could ever live independently. Because we realized he'd been learning his roots from following us and his friends around. And that's how he learned his roots around the school. That's how he learned his roots around the neighborhood he followed, and he just memorized the patterns while he went and he just so in order for him to live independently, he wouldn't have a person to follow, right? Because I living independently doesn't mean living with your mom in your dorm room, right? So we knew that he needed to have some form of training in how to use technology to help him navigate. Because we knew he could read and like with Google Maps and like he has to be able to navigate independently without following someone else around. And I didn't know how to give him that training because I'm not an orientation and mobility specialist. I'm a music teacher. And I also knew that the only way to access those types of blind services is with, uh, dealt with an actual diagnosis. And so that's why I was like, well, we have to get a diagnosis for this because he's actually unsafe. And I can't put, I don't think I can put this kid in a car. We know now, I haven't told you all of the problems with Sebastian's vision. He has a lot more wrong with his vision than just those two things we've talked about. Sebastian can never, ever drive. He is almost entirely blind. His vision is so severely impacted. And I didn't know that in the first couple of days, right? We took us several months to figure out everything that was wrong. But I was already like, well, if he can't navigate on foot, like a typically sighted person, there's no way he can do it in a car, right? So this isn't safe. So, and I mean, and we had been planning on buying him a car for his 16th birthday. We were just like two weeks away from enrolling him in driver's ed. Crazy. Yeah, it was crazy. So long story short, we went back immediately to see the neuropsychologist who had done the second neuropsych evaluation on Sebastian and told us that, well, maybe he might have nonverbal learning disability. And I was using the correct verbal, um, I was using the correct medical terminology to describe my son's symptoms at that very first appointment. He had prosopagnosia. He had topographic lagnosia. I understood, um, that I could explain how we figured out that these were the problems that we had with the stories that I just shared with you. You know, that we had made a discovery about his vision. I had the two different neuropsych evaluations done seven years apart, showing the gap between his achievement. And what his visual spatial scores were. I had his, his standardized test score showing that he was scoring in the 99th percentile in both math and English. So he's not intellectually disabled in any way, right? And I had all of this information I'm armed with. And the doctor took one look at us and said, I can't help you. And I don't know anyone who can good luck with that. And he dropped us and we just literally bounced from doctor to doctor, to doctor, to doctor, to doctor, to doctor. And it just got worse and worse. And we were actually labeled crazy by the medical establishment. And it was quite horrific. I mean, we were treated like criminals. I felt like we were treated, like we were the only, my son didn't need any academic help. We were never asking for help with academics for my son. The only thing we were looking for was a few weeks of help with navigation, orientation, and mobility training with the white cane. One of the things we discovered in the months after we figured out Sebastian had CVI is we discovered he has a very, very common symptom of CVI, which is called visual fatigue or visual tiring. It's a very common, very well documented, um, symptom of CVI, and what it means is people who have it often go randomly and uncontrollably entirely blind from being overheated, exhausted, sick, and overwhelmed. And it's basically a function of blood pressure. If you've ever fainted, I've only ever fainted, well, actually twice in my life, so I lost consciousness twice. But your vision blacks out and then you lose consciousness. The vision goes first. And so, and that's a function of blood pressure. When the blood pressure drops too low, the vision blacks out first and then the consciousness goes. People who have CVI have CVI because they have brain damage. And so the visual processing centers of their brain are more susceptible to fluctuations in blood pressure than are typically neurotypical people. And so those fluctuations and drops in blood pressure affect their vision. And it's uncontrollable and random. And so we figured out pretty early on that Sebastian was actually going entirely blind, entirely, completely blind when he got too hot. And so then I was like, well, my kid is entirely blind in the city of Chicago. He, it's not all the time, but it's random and he can't control it and he can't fix it once it starts unless he can get himself to somewhere cool, which is how do you get yourself to somewhere cool when you're entirely blind in Chicago and you have no white cane and you have no training. Right? So it was, this was a matter of life and death for my son. This is a matter of safety for a blind person to be able to navigate safely. And so, we were highly, highly motivated to get him this diagnosis and it didn't matter how much evidence we had, how much medical terminology we had, I had hard evidence. And the reason we could not break through was because there is no diagnostic code for CVI. CVI was identified as the number one cause of visual impairment in the developed world more than 10 years ago. It is more common than ocular blindness in developed nations, and there's no diagnostic code for it. And so the doctors receive no training in it, and in fact, the Perkins School for the Blind has a wonderful, wonderful section on their CVI, um, website, and it talks about prevalence of CVI, and there's a white paper on the prevalence and the lack of access to diagnosis, and they have a map that shows, like, where providers are that can diagnose CVI in the United States, Did you see that? Yeah, yeah. That was actually a question I had for you. It was going to be, where can people go to learn more? And you know, if they think their kid has this, where can you actually go to see somebody who knows about it? Yeah. Well, there's still no one in Illinois. Okay, yeah. And if you do go to Perkins and look at that map, there's a whole lot more people who know about CVI now than there was in 2017, So who was it, who was it that you finally got to see then that, that gave you that diagnosis? So we saw Dr. Barry Cran, who is the head of Optometrics at the New England Eye Low Vision Clinic at the Perkins School for the Blind. And he was absolutely wonderful. I have to say, I am sad to say he is retiring this spring and, um, I'm really glad I'm going to get to see him at his retirement, so that will be wonderful because he spent hundreds of hours with us. To get the entire history of Sebastian and how we figured everything out. And, um, it's a wonderful human being, but the Perkins school for the blind is, would be the only place that I can recommend as a place to go. If you suspect your child has CVI, Okay, now let's talk about CVI and let's talk What's that? Let's talk about CVI now. Um, can you explain if you, if you're comfortable, how vision should work and then talk about what CVI is and how, how it's caused? Yeah. Absolutely. So the way the vision works is light enters the eye through the pupil and it strikes the back of the eye where it hits the retina and the retina actually takes that light and transmits it into an electrical signal that then is processed and sent through the optic nerve past the lateral geniculate nuclei to the back of the brain. And they've actually measured. With fMRI technology, and they have shown that all conscious perception of sight begins when that signal reaches the back of the brain. And the reason that's important to know is because I think we all of us typically sighted people have this kind of kindergarten understanding of vision, right? Like we smell with our noses, we hear with our ears, and we see with our eyes, but that really is the kindergarten understanding of what vision is. In reality, our eyes are just light collectors. They've measured with the fMRI technology, it takes a tenth of a second after the light strikes the retina for that signal to reach the back of the brain before there's any conscious perception of sight. And so all conscious sight happens in the brain and the eyes are just collecting light and passing the signals to the back. And so our brains, we, it's not a slogan. When you hear people say we see with our brains, that's not a slogan, it's an actual fact. And, in fact, people don't even need eyes to see. There is a man named Daniel Kish who lost both eyes to cancer in infancy, and he taught himself to echolocate. Daniel has no eyes, but he can ride a bike. Daniel has no eyes, but he can read, if the letters are three dimensional. You can take Daniel somewhere he's never been, and he can tell you everything he sees around him. When they put Daniel into an fMRI machine, which is a functional magnetic resonance imaging machine, which shows you what the brain is actually doing as opposed to just what it looks like. When Daniel is in the fMRI, his visual cortex lights up when he hears echoes, but not when he hears ordinary sounds. So he is quite literally seeing with echoes just like a bat or a whale or a dolphin, and they've proven that with the fMRI. And so, eyes, we don't see with our eyes, we see with our brains. And so, as we mentioned at the beginning, ocular blindness is caused by damage to the eye and to the optic nerve, right? But CVI, or cerebral visual impairment, is caused by damage to the visual pathways of the brain. Thank you. And so anything that causes brain damage can cause CVI. And we have this enormous public health crisis right now because we have all of these little preemie babies who did not used to survive. Our NICU care has increased exponentially and now we have all these teeny tiny babies who did not used to survive premature birth who now are. And they very often, not always, thank goodness, but they very often have brain bleeds and many of them have CVI and cerebral palsy and epilepsy. And the correlation between the two is unbelievable. I believe it's between, I could be wrong about this, but I think it's between 70 and 80 percent of people who have cerebral palsy also have CVI. Really? Oh, yeah, yeah, it's the core. It's just huge. So, um, So a large percentage of those with CVI have, have been born prematurely? Or is it not, like, is it, is it a high percentage? see I CVI can be caused by anything that causes brain damage. So, I mean, we see shaken baby syndrome, right? There's, um, drowning can cause it if you survive a drowning incident, right? Any type of brain injury can cause it. And so, um, to answer your question, so how does it work? So once that signal reaches the back of the brain, there are two pathways through the brain involved in visual processing, there's actually three. I, I misspoke more than 40 percent of our brains are involved in visual processing. When that signal reaches the back of the brain, if you think about like the dorsal fin of a shark, there's the dorsal pathway that comes up the back of the brain. And that visual pathway is involved in. Finding a face in a crowd, finding a distant target. Um, if you're looking at a puzzle and trying to find a particular piece. If you've ever, do you remember those, um, Where's Waldo books? I don't know if your children have that. Right where you have a very busy cluttered scene and you have to find something in the clutter that visual clutter right dorsal stream vision is involved in sorting all of that out and if you have damage to the dorsal pathways of the brain, you many people find who have who have dorsal stream dysfunction. They find looking at where's Waldo not just challenging and hard to do makes them physically nauseous and impossible for them to find. So common symptoms of having dorsal stream dysfunction is anxiety and distress and going to a grocery store where there's just stuff everywhere. Inability to find a toy in a pile right in front of you, right? Finding the right shoes in a pile by the door, finding the right t shirt in a bunch in a drawer. Right. So inability to do that. So that's how the dorsal stream impacts the vision. Then there is the ventral stream. The ventral stream runs more through the middle of the brain and that's where recognition takes place. So we talked earlier about the right fusiform gyrus of the brain and how that's where facial recognition takes place. There are different parts of the brain involved in recognizing different things. And so there's a different area of the brain that's involved in recognizing faces from places. Those are close together, as we talked about, but there's also another area of the brain involved in recognizing objects and words and letters and numbers and simple shapes. And so every CVI is unique because where the brain damage occurs is fairly random. And so it's one person might have very severe CBI and be able to recognize faces fine. I have a very dear friend who is legally blind in Iceland has severe CBI and yet can recognize faces without problems, you know, and then there's my son who is almost entirely blind. And can't recognize his or anybody else's face. So it just depends on where the brain damage falls. And this is a big part of the reason why it's been so hard to get a diagnostic code. Because people can be so different. And also, as we talked earlier, CVI can be a Entirely invisible disability and people can appear to be typically sighted who really aren't at all. So, is there anything in the research today that gives you hope about improving diagnosis or even rehabilitation for CVI? Well, there's been a lot of progress since 2017. Um, just, I think it was two years ago for the very first time the Perkins school for the blind host, well, they hosted conferences about CBI for some time, but two years ago they had Dr. Michael Chiang, who is the head of the National Eye Institute, which is a division of the National Institutes of Health. As their keynote speaker at their CVI conference, and so that was a big deal because for the very first time, the National Institutes of Health have recognized CVI as the number one cause of visual impairment in the developed world, and that is huge to have the National Institutes of Health recognizing that this is a public health crisis. And so, they have actually named CVI as a research priority, and so for the first time, the NIH is, um, working towards, um, getting research dollars towards this highly under researched common disability, so that's a huge step forward. I am on the committee with the National Institutes of Health for the CVI, um, My brain isn't working here. Um, we are working on creating a registry of all the people who are diagnosed with CVI right now. And we'll be meeting in June in Boston. And so with the NIH, our goal is to create a registry registry of everyone with CVI who's diagnosed currently so that we can help foster research by getting people who have CVI into the research to help us understand this condition. So, this has been a huge step forward getting the National Institutes of Health on board. I am hopeful that we will have a diagnostic code sometime this year, but I don't know. I was able to speak in person in Bethesda at the National Institutes Conference. They had a , , NIH CVI conference in November in Bethesda. And I was there as a parent advocate with 50 of the top vision and brain people in the, um, in the world, actually, it was an international conference. And, um, to talk about this need, and I was approached after I spoke by members of the NIH and told how impactful my speech was. So, um, It is a really powerful story. I would encourage everyone to read the book. thank you. You mentioned a lot of, throughout our conversation, a lot of signs of CVI. It seems like it can be different for everyone. Um, do you have kind of a summary of what parents can look for in their kids as they're little and growing? Thank you. There's a lot of outdated information about CVI still circulating, and there's a lot of myths about CVI and stereotypes about CVI, and if you read our, when you read our book, you probably noticed we were completely confused about CVI. Repeatedly told that there was no possible way that my son could have any type of neurological visual impairment because he was academically able and that obviously is a total myth, Yeah, like it seems, it seems though, your, your, your son, and I can be wrong, he seems like a special case, right? Like he has very, um. Significant, what's the word, not coping mechanisms, but the, He does. Yes. So there's two things. So first of all, when we talked about the, the ventral stream of the brain, right? There are areas of the brain that recognize words, letters, numbers, and simple shapes. Okay. just like there's areas of the brain that recognize spaces and places and colors and objects, right? And so my son just happened to get really lucky that the areas that recognize words, letters, numbers, simple shapes were not damaged. And so the only things that he can see and recognize like a typically sighted person can are words, letters, numbers, simple shapes. And so my son has visual access to numeracy and literacy. And so he passed for typically sighted because he can see words, letters, numbers, he can read, he can do math, even though he can't see faces or places or objects or biological forms. Every time he looks at his hand, it's the first hand he's ever seen every single time. Cause it doesn't record a visual memory. And so, uh, with one in 30 students in a regular education classroom, having symptoms of CVI, I would say that my son represents the typical version of CVI ers. We have a lot of kids with CVI who can read, but that doesn't mean that they don't need orientation and mobility training. It doesn't mean that maybe they don't need other supports with other learning other things, because if they can't recognize objects. Right. How are they going to have the same access to the information as the other kids who can see the things around them and the environment around them? The vast majority of learning that goes on is incidental learning that happens visually. And so just the fact that you can read doesn't mean that your vision is typical. And so I would highly caution parents think, well, my kid can read, so he's fine. My kid passed every vision test every single year because he can read and he's still almost entirely blind. And Our optometric exams are decades out of date. They are not testing for CVI. So they're just looking at acuity. And so, just to tell you, I have a very dear friend in Vermont. Um, her daughter was, uh, diagnosed at the age of 12. They figured out that this child had a CVI at the age of 12, and this child has even worse vision than my son, and my son has almost none. Again, all normal developmental milestones, a nine on the APGAR score. No one had a clue that there was any disability, any vision disability, nothing. And then they figured out what was wrong. Again, a lot of anxiety and dysregulation is what they were seeing. Tons of dysregulation and a total inability to handle academic work. And this child, the parent is a brilliant parent. They're an educator. They were doing homeschool one on one, research based, Dyslexia interventions with this child for years without any success, and they figured out what it was. This child has a letter agnosia, like my son cannot form a visual memory of faces or places or objects. This child cannot form a visual memory of letters and numbers. Despite years of one on one research based dyslexia interventions, This child cannot recognize letters visually. And so about two years ago, they started Braille and this child is reading and writing at grade level for the very first time without anxiety, without temper tantrums, without falling apart after 20 minutes of exhaustive reading. effort trying to read visually when they can't. And so, seems so hard to figure out what the signs of this are when they can be so different, depending on what part of the brain is, um, affected. And so, it's, it seems like the common denominator, at least for the two cases that you just mentioned, were anxiety. yeah, anxiety. it's a very broad thing, um, so it also wouldn't point you towards brain, you know, visual Yeah. Well, I kind of went off on a tangent there. I'm sorry. Cause there's just, there's a lot I didn't get to say, you know, so, um, but to say, talk about things to watch for people who have CVI are very commonly misdiagnosed with autism. They are very commonly misdiagnosed with autism. Intellectual disabilities and learning disabilities in particular, I think that as we learn more about this letter agnosia that my friend's child has, we're going to discover that there's a whole group of children that are misdiagnosed with dyslexia. which is different from a letter agnosia. And so when you're finding children that, where dyslexia interventions aren't working on a child diagnosed with dyslexia, we need to be looking at do they have CVI and a letter agnosia, and do these children who appear to be typically sighted maybe need Braille instead. So that's a big part of why I do this work, because I feel like CVI, understanding CVI is the under, is the key to understanding what are learning disabilities, you know, because we know learning disabilities exist, but like, what, what does that really mean? Why are they really struggling? To be honest, if you cannot form a visual memory of a letter despite years of practice you can draw them perfectly because your muscles have learned the pattern of the shape of the letter, but you can't look at one and ever see it, right? That's, that's a problem that can be solved with braille. Right. So, yeah, Wow, that's a lot to think about. It's great that you're out and about talking about this because, like you said, these disabilities or diagnoses are so prevalent, but they could be getting it wrong. yeah, because like we said, we know at least 80 percent of people who have CVI, children who have CVI are undiagnosed. The research shows that. And you said if parents do suspect something, they should really try the Perkins Institute first, is where Yes, if you go to the Perkins School for the Blind and find their, um, if you just look on the page, you can find the CVI The CVI area, it's right on the first page there and just click on that and that will take you to, um, lots of information about prevalence and basic information about CVI. They have courses you can take on it. Um, but I would, if you suspect, but you aren't sure, you can look at that, but I would also, Anybody who thinks that they might have, their child might be misdiagnosed or might have CVI and autism, which is absolutely possible, right? Or CVI and a learning disability, which is absolutely possible. Right. Um, one of the best sources of factual information about CVI is the website called CVI Scotland. It's at cviscotland. org and it's totally free. It's extremely accessible to lay people who know nothing about CVI. They have actual videos showing what it could be like to see with the brain of a person who has CVI. I want to caution people listening today that if you watch one or two videos about that, that's not going to show you everything about CVI because every single person is different. But it can give you sort of a general idea of what it might be like for some people with CBI. And so, yeah, they have tons of factual research based information that's easy to understand for people who don't have a medical background or a vision background. And so, yeah, there's, there's a lot of good information. So CBI Scotland and Perkins School for the Blind. Okay. There was one last thing I wanted to talk to you about. Towards the end of the book you, I mean we also talked about it here, that CVI comes from traumatic, It can come from a traumatic birth, and it seems like you were glad that you didn't know that because you would have handled Sebastian with kid gloves, which might have further hindered his development. So I was wondering if you could talk for a minute about that and the importance that you talk about in the book of music and movement, because I think that's important for a lot of mothers to understand. Thank you. Yes, you're right. We didn't know he was blind until he was 15. I didn't know he'd suffered a brain injury at birth. And, um, I did treat him just like a healthy baby because I didn't know that he'd had a stroke. And I know as a mom, like, if I had known that my son had suffered a brain injury at birth, I would have treated him as a very fragile, very, Delicate thing out of concern. And I didn't do that. I treated him just like it would any other healthy baby, because I didn't know. And as you mentioned, I am actually a music teacher. I am an early childhood music and movement specialist. And, um, I, part of that training as an early childhood music and movement specialist, we learned a lot about, um, the benefits of the neuroscience of music. And there is actually now almost three decades of research demonstrating that high quality music and movement experiences before the age of seven have tremendous neurological benefits. Those benefits include better balance, coordination, fine and gross motor skills, auditory discrimination, language development, reading and math ability, and even IQ. And so I was aware of those benefits and I love music. And so when I had my own kid, I just did what any self respecting music teacher would do. And I sang and danced and played with my kid musically because I think it's fun. But I also was aware that it was really neurologically beneficial for any child to have this. And so I didn't sit down with my son for half an hour every day and do like a half hour music time. It was throughout the day every day. So, you know, I was happy. We were dancing around to some song on the radio. Um, it was nap time and he got rocked and had a lullaby, you know, changing his diaper and here I am doing a body awareness rhyme on him, you know, so bouncing games and rocking games and swinging. And the reason it's important is because Having these types of musical activities, the only activity known to science that forces both sides of the brain to work together through the corpus callosum is music. Scientists have known for decades that the brains of musicians are actually different from the brains of non musicians. We have more and better connections between the right and the left side of the brain. And so, when you have a child who's had a brain injury, helping them to develop those connections between the right and left side of the brain is really, really important. And so I think all parents, whether your child has a brain injury or not, whether you know they have a brain injury or not, you should know that every human culture sings and dances and plays musically with their infants and their toddlers, because music and movement is necessary for normal human brain development. That's why music is a part of every human culture. It's a necessary part. And I think one of the biggest tragedies of modern life is the professionalization of music making where like only the stars get to sing and everybody else has to sit back and think, Oh, we're bad. But the reality is there is nothing more calming and more soothing and more entrancing to an infant than the sound of its parents voice. need to hear the sound of your voice. They need to hear you sing. Research has shown that newborn babies match pitch within minutes after birth. Newborn babies match pitch, which means they can sing. In my early childhood music and movement lessons, I had infants and toddlers matching pitch and singing together. Before the age of two, Wow. little ones at the age of one singing in tune and matching pitch, and they need this for normal human brain development. Well, that explains why, I mean, explains why music is such a powerful thing for everyone. Everybody feels, feels that., so it makes Yeah, instrumental in brain development. Hmm. have known for quite some time that the root of developmental delays are in the vestibular system of the body. So when you think about what our ears do, our ears don't just hear, our ears have dual functions as an organ. And so there's the hearing, listening part of the ear, and then there's also the vestibular part of the ear, which is the balance and coordination and proprioception, which is knowledge of where your body is in space. And, um, I was asked to give a presentation on auditory processing disorder and CBI to the Smith Kettlewell Eye Research Institute, um, back last fall. And one of the research papers that I was talking about discussed how when they were looking at children with learning disabilities, 100 percent of the children in the study with learning disabilities had vestibular issues. 100 percent of them. Yeah. Every single one of them had problems with their vestibular system. And so one of the major benefits of music and movement that we know is better balance coordination, fine and gross motor skills, right? So my son had all normal developmental milestones. I don't have a control version of my son, but did not get music, and then my son who did, right, I only have the son who did, who had all normal developmental milestones, and despite being almost completely blind, is able to ride a bike, because he has great balance, right, so, Man, I have so many questions on that, but I've already gone over here, so I'm not going to take any more of your time there. Um, I did want to make sure I said, there were a couple things that, at least one thing that really struck me with your book. Um, You were clearly an attentive and loving mother and it was just really heartbreaking to read about your guilt. What, you know, when your son finally, when you finally realized these things about your son, but it was very clear to any outsider that you were loving, attentive, and the, the fighting that you did for him and the work you guys did together, it was just really inspirational. You guys are really resilient. And, um, I think a lot of people out there are lucky that you guys, you know, did what you did and are doing what you're doing. So I don't know anyone with CVI, but I just feel like I want to say thank you anyway. Um, and guessing 30 students in a regular education classroom having CVI, that everybody knows someone who has CVI, they just don't know that they know that. that's true. Um, so where can mamas find you or where would you like to point them? You talked about some resources before, but what, anything else? Oh, sure. If you would like more information about our story, my name is Stephanie with a PH, and my last name is Dusing, D as in David, U E S as in Sam, I N G, um, and you can just Google my name and find my website. Um, there's a contact me form on there. You're more than welcome to, you know, to just send a message. I'm happy to help if you need help or guidance. I, I do a lot of advocacy work with parents all the time. So if you have questions, feel free to reach out. So I'm happy to connect you to people who can help. Awesome. Thank you so much. Thank you. This was wonderful. I so appreciate being here. Thanks for your time today. Of course. Hey mamas. Thanks for listening. If you enjoyed the episode, please like, and subscribe and comment below your thoughts. I'd love to hear from you. One of the main reasons that I started this podcast was to connect with other mamas. So I truly would love to hear from you. You can comment on YouTube. Um, the podcast platforms now allow you to send me a text message and you can also DM me on Instagram at modern nurture pod. So hope to hear from you soon. See you next time.