Season 6 Episode 13: No Mow May, Pets, Prams and Unseen Disabilities with Stephanie Duesing

In this episode, we explore the significance of those wild patches on our lawns and why they're crucial for our buzzing friends. We also navigate the emotional landscape of new mothers who find solace, challenge, and joy in their pet companions amid the transformational journey of parenthood.

Ever been face to face with someone you've known for years, only to realize you can't quite place them? Imagine that being your constant reality. Joining us is Stephanie Duesing, a mother who shares the startling discovery of her son Sebastian's covert struggle with blindness and prosopagnosia, a condition that profoundly alters one's perception of the world.

Together, we traverse the intricate pathways of the brain that give rise to visual recognition and the impact that conditions like Cortical Visual Impairment can have on everyday life. Her story is one of resilience, scientific intrigue, and the paramount importance of awareness.

The tale of Sebastian, who navigated the world with topographical agnosia, challenges our understanding of perception and raises poignant questions about how we support those with unseen disabilities. Through this episode's intimate discussions, we gain insights into the power of the human brain and the unexpected pathways it can take, drawing parallels with the legendary neurologist Dr. Oliver Sacks.

Prepare to embark on a narrative journey that offers both enlightenment and empathy, reminding us of the diverse tapestry of human experience.

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https://stephanieduesing.com/

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Transcript

Speaker 1 0:08

Hello science enthusiasts. My name is Jason Zukowski. I'm a high school chemistry teacher and a science communicator, but I'm also the dog dad of Bunsen and Beaker, the science dogs on social media. If you love science and you love pets, you've come to the right place. Put on your lab coat, put on your safety glasses and hold on to your tail. This is the Science Podcast. Hello and welcome back to the Science Podcast. We hope you're happy and healthy out there. This is episode 13 of season 6.

Speaker 1 0:40

We mentioned last week that Bunsen hurt his leg after Comic-Con. When we got home we noticed the neck the day after. He had a bit of a limp and we've been resting him and the limp has gone away, which means crossing our fingers that he may not require surgery. It may be a partial tear of his cruciate like it was before, and with a lot of rest he healed. Let's knock on wood and hope that continues. I want to thank everybody who had kind comments about our last couple of podcast episodes. Chris is joining me as the co-host for the main part of the show and it's been really fun to work with her on the podcast and people have really liked listening and having her voice on the show, so we're going to continue to do that.

Speaker 1 1:22

In science news this week we're going to look at an article that suggests we should probably think about leaving part of our lawn unmown to help butterflies and moths and also bees. In pet science, we're going to look at this really fun article called Pets and Prams. So it was for new mothers and pets how new mothers are experiencing having a baby and also juggling having a pet. Our guest and ask an expert is Stephanie Duesing, and her interview was so important and powerful I let her tell her story and it was too long for one show, so her interview is going to be in two parts part one and part two.

Speaker 1 2:06

I don't want to spoil the interview, but Stephanie found out that her son had a form of blindness. That was quite shocking. The story is emotional and it will tug at your heartstrings, but more importantly, it is really interesting science and the hope is that raising awareness. This won't happen to other families again. We'll get right to the show without a joke today, so let's get going. This week in science news let's talk about the bees and the butterflies and the moths Two of those insects I think you like, chris.

Speaker 2 2:43

I love butterflies and I love bees and actually I love moths when they are being eaten by bats as part of the ecosystem circle of life cycle.

Speaker 1 2:54

If a big, freaky moth comes into the house, it's not your friend.

Speaker 2 2:58

I'm not a fan, but you know what. They have their place in the food web.

Speaker 1 3:03

Yeah, I'm actually not a super big fan of bees. Come into our house either that's because you were allergic to them yeah, that is because I got a mega dose of bee venom over a decade ago and now I am allergic to bee stings.

Speaker 2 3:17

Thank you, bees not gonna lie, that was a very strange event that happened to us and the tree that was outside our house.

Speaker 1 3:27

Yeah, so I've referenced this before by myself on the Science Podcast, but an entire colony of bees decided to move into a tree just outside our house 20,000 bees.

Speaker 2 3:39

It was 20,000, wasn't it? There was probably 30,000 bees 30,000 bees.

Speaker 1 3:43

Like so many bees, the tree's weight was bent because of all of the bees, and they weren't none too happy with humans who got too close.

Speaker 2 3:52

So you found a beekeeper who came and got a bunch of them yeah, he just, he came in and he was like a beekeeper who was a bee whisperer and he said you're to go into that box and they were like okay, and away they went. They just I just reminds me of SpongeBob.

Speaker 1 4:11

Just hey, here we're going to go, and with the jellyfish, yeah, Unfortunately, beekeeper Bob or whatever his name is, I forget his name Did not get all the bees he got name did not get all the bees he got he.

Speaker 2 4:27

He said he wouldn't be able to get absolutely every single bee, but he got the queen and he got, uh, the majority of the bees and he was very happy, um to be able to have the bees he said.

Speaker 1 4:34

That actually allowed him to stay afloat as a beekeeper yeah, a bunch of free bees about 5 000 bees were left behind and he said you can wait them out because eventually they'll starve to death or you can kill them with water. And we're like we're not going to mess with the bees. Sadly, we can just let them just starve to death. But they were bugging our family like they were angry and if you went outside they would chase you and it was a miracle none of you you were like duncan was a little guy when this happened.

Speaker 2 5:07

He was little and he was terrified he wouldn't get out of the house. It took a lot to cajole him to get out of the house, but then if you were in the vehicle and you had to come back into the house, he was not doing that either. So it was very difficult for us to navigate that situation.

Speaker 1 5:25

Yeah, so I got, I put on all of my winter gear and duct, taped the holes and I took out water, took out a hose and sprayed the bees, but I did not protect the front of my face and I got stung I don't know so many times. I was doing good and then they all swarmed at me and I got stung a bunch, tons and tons of times on the front of my face and they got into any nook and cranny. I got stung too. So I probably should have just put on a real beekeeper suit, because you're way more protected than my you know, off-brand Canadian Tire beekeeper suit I made out of duct tape.

Speaker 2 6:03

Jason, you just had a coat on a soft-shelled coat and you duct taped it. There was no beekeeping suit at all.

Speaker 1 6:13

It was definitely homemade red-green duct tape variety, yeah, and now I am allergic to bees, as the doctor told me, the mega dose of venom that I got probably was enough to make me allergic to bees for the rest of my life, even though bees and I now have a different relationship. We're going to take a look at this article that actually has some interesting things to say, mostly about butterflies and moths. Bees come in a little bit later and the article is written by two butterfly conservationists, richard Fox and Elizabeth Hordley. What did they find in the study, chris?

Speaker 2 6:55

They talked about that yards surrounded by houses and long grass could boost butterfly abundance by 18%, and they also found that in yards surrounded by farms the increase could be as large as 93%. Leaving your yard unmown could be more beneficial and increase the number of butterflies and the moths together. So you can look at having a native meadow that you don't mow, or just an unkept corner of the yard.

Speaker 1 7:26

They were looking. The main thing is they were looking at what would happen if we just stopped mowing, if we stopped the manicured lawns that everybody seems to like in places and just let our grass be grass. Because there's a whole bunch of things that start to happen when you mow all the time. Number one caterpillars, moths and butterflies. That's a huge loss of their habitat. They rely upon the areas that we mow and if you mow them, you reduce the availability of their food and where they nest. Also, you chop down all of their food Little weeds that you might mow down that produce flowers that makes nectar for them and pollen, and if you mow that down or chop it down or weed it bye-bye no more food for these little guys. You also expose them to predators. So after mowing, even if caterpillars are crawling around in the ground, that just makes the grass that much shorter and the predators that can get at them, like birds and other insects, it's a smorgasbord. Do you ever watch what happens after I mow our grass, chris? What lands right after I mow?

Speaker 2 8:38

The robins come out.

Speaker 1 8:40

Oh, the robins follow me when I'm mowing and they just have a field day on everything that they can get. At that, after mowing, it churns up everything and they're just eating all of the bugs and maybe some caterpillars too.

Speaker 2 8:54

That's right. And another thing that mowing does is disrupts the nesting sites. So some bee species nest in the ground or in cavities in dead wood and we had some carpenter bees that were living in our old railweed ties and I was very terrified for a moment that they were going to come out and sting us, but they didn't, because that's not what they do. But, mowing can disrupt those nests and in particular, if the ground is mowed at a time when bees are actively nesting.

Speaker 1 9:23

We've had a bee expert on the show before, and that's one of the things that she said. That's a big misconception. We think of bees as stinging right Like honeybees and bumblebees, but most bees are single moms. The last thing they want to do is sting, because it's like a huge resource that they'd lose all the venom that they've got stored up, and that's possibly damaging to their bodies. And most bees don't live in a colony. They're just out there by themselves doing the best they can, and that goes for butterflies and moths, butterflies being, of course, the prettiest of the three and probably the least scary Except, though, remember how terrified Adam was of butterflies when he was little though.

Speaker 2 10:04

Remember how terrified adam was of butterflies when he was little. That came as a very large surprise to me that he did not want to go in the botanical garden with the butterfly. He absolutely steadfastly refused and I was like whoa, what is going on?

Speaker 1 10:15

he said I am terrified yeah, the whole idea of this article is just to rethink about, maybe, what you're doing with your lawns. I know in places around the world, if you just straight up stop mowing your lawn, you may actually get in trouble from the city, let alone be judged by your neighbors for having the unkept jungle living beside them, our whole front field. I actually started to mow that. That was left wild and the clover out there. You could walk through that and hear the hum of bees. I loved it, and then they would leave you alone because they were out harvesting nectar.

Speaker 1 10:50

I would sometimes go walk out there and just listen to the hum of the bees, but there were weeds that were growing out there and we made the decision we had to mow that field to keep the weeds down because we were getting in trouble from the county because of the weeds. To keep the weeds down because we were getting in trouble from the county because of the weeds. So I guess the simple thing is, as you mentioned, chris, is maybe you could find a part of your lawn to let grow wild. It's going to be better for moths, it's going to be better for butterflies and it's going to be better for bees and all three of those. Though they're different insects, they're all big parts of the ecosystem.

Speaker 2 11:21

I love that. I love the butterflies. So one thing that we're doing is we're creating a butterfly garden, but it's always good to nourish the caterpillars, because they eat different food or different shoots or different roots before they turn into a butterfly. But having a source of nectar for those butterflies, I think, is something that we are passionate about, and so we've created a butterfly garden on our walk.

Speaker 1 11:49

That's right, yep. Every spring I take a massive thing of flowers and I just chuck it where all of the gophers have made their holes and then flowers grow there and I think, like I'm starting to notice. It's taken a while, but I've noticed like the amount of butterflies that we have is huge now compared to what. It's taken a while, but I've noticed like the amount of butterflies that we have is huge now compared to what it was like a decade ago. We had no butterflies a decade ago zero I'm just glad they're at our house.

Speaker 1 12:14

We can add them to our collection of butterflies and bees and beavers and bobcats all the bee names but if you leave in a bit of your lawn unkempt, the bugs, the butterflies and the bees will be thankful. That's science news for this week. This week in pet science, let's look at an article. I love the study title. It's called Pets and Prams. It's an in-depth study that looked at the effect and the opinion and the emotions that folks who had just had a baby how they feel about their pets. I don't did we have when our kids were really little. We didn't have pets, did we? We didn't go through this.

Speaker 2 12:57

No, we didn't. We didn't have pets. So perinatal wellbeing, or the perinatal time, is from the discovery of pregnancy to about a year after birth of the baby, and so pets, including dogs and cats, have been studied for their potential role in supporting perinatal well-being. And it's not, unfortunately, well understood the impact of pets and their potential role. So there was a study, and it was aimed at exploring the perceived risks and benefits of pet ownership on perinatal mental health, and this was done through qualitative reports from mothers with pets.

Pets and New Moms' Mental Health

Speaker 1 13:41

I like. The one of the things that I like I saw the study and what really got me more interested in doing this with you, chris, was risks. Like we do paint, pets are amazing for mental health, but there are some. Like as we go through the study, there's actually some negatives that this study found with having pets and mental health with new moms. The data came from in-depth analysis of open text questions from 31 participants, so 31 moms, and there was five major themes that popped out the most.

Speaker 1 14:18

The first one, and the most positive one, was that pets promoted well-being and grounding during this big time of change. So a theme that emerged from the questionnaires with these folks was that their pets were emotional support for them and a sense of stability during a pretty big life moment, bringing a new human into the world. Pets were seen as companions who offered comfort and reassurance and especially during times when you don't know if you're doing the right thing and your baby's crying, they helped decrease stress. So that's good. Anything else, any other themes that came up that were positive, chris?

Speaker 2 15:03

Yeah, so another theme that came through was pets being a preparation for parenting.

Speaker 3 15:09

And.

Speaker 2 15:10

I know, I know, when we didn't have pets and your cousins had a cat and we had kids and she had a cat and she said, oh, this is my fur baby, it's just like a child. And you said, no, I have never been more tired in my life than when the kids were toddlers. But caring for pets help mothers develop caregiving skills such as feeding, grooming and setting boundaries, and they found those skills with pets transferable to caring for their infants.

Speaker 1 15:44

I don't know if it preps you for changing diapers, though, unless you have an elderly pet.

Speaker 2 15:48

Yeah, some participants felt that the challenges of pet ownership, such as managing behavior, the dog's needs or the cat's needs, prepared them for the demanding needs of their child and for the demanding needs of parenthood in general.

Speaker 1 16:04

Yeah, there's something to be said for that. Do you remember how on our toes we had to be when Beaker was a puppy? Yeah, like 100.

Speaker 2 16:14

You had to be with it.

Speaker 1 16:16

She got into everything. Yeah, she would wreck stuff, she would destroy things you had. We'd watch her with bunsen because we didn't know how they would get along. Bunsen did great, by the way, but he was enormous and she was tiny and she was not scared of him in the slightest no, she was a little shark piranha yeah, yeah, I to choke.

Speaker 1 16:36

That's so funny. There was a negative theme that came out from the study. Despite these wonderful benefits, some participants expressed that the pet was a burden. They had a new human that was incredibly needy, like infants are, like they are your life right, like they need to be fed and changed and you got to watch them and you don't have as much time for your pet as you did before. These additional responsibilities, combined with the demands of pregnancy, felt overwhelming at times for some of the responders. There wasn't a great. There wasn't skills or time to balance the needs of what their pets wanted with what their babies wanted and that caused stress and also guilt. That would. That makes sense. That like that tracks if you are used to taking your dog to do X, y, z and especially in those first weeks when you're recovering like I can't speak from experience, but I know you were down and out at right after birth for a little bit at least you just don't have the same kind of time and energy.

Speaker 2 17:46

Yeah, but you know what. The participants also talked about the joy of pet baby interactions, like the positive interactions between their pets and infants, describing moments of joy and companionship. So with joy, unfortunately, comes challenges, because you have to manage the pet behavior around the baby and ensure the safety of both the pet and the infant, and so you really do have to be on your toes, and some participants even mentioned concerns about allergies or infections that could be transmitted between pets and infants. So there's joys but challenges of pet baby interactions, and that's something that the participants spoke about.

Speaker 1 18:31

I love those TikTok videos of the parent bringing the parents bringing the new baby home and the dog is like whoa, what's that? And then the dog just instantaneously, or cat is this new creature is the greatest. I will love this thing to death and guard it with my life, like I love those videos. But sometimes pet behavior doesn't go that way, and that's the last theme theme. In some cases the pet and the baby had great bonds and it was overall a positive experience between the pet and the baby. But there were some pets that were extremely stressed out and anxious with the arrival of a new baby. They became either way too protective or they actually were. The parents had fear that the pet would hurt the baby. That was. One of the things is that there was pet behavior that was new, that wasn't necessarily positive all of the time and of course I think that might roll back into the other theme of added stress to the new parents.

Speaker 2 19:38

Yeah, but I think understanding these perceptions that came out in the study will help practitioners support pet ownership and new parents in developing strategies to help manage their pets in a way that enhances the well-being for everyone involved.

Speaker 1 19:55

So it's a win is the well-being for everyone involved, so it's a win. Yeah, if ahead of time, you can manage those concerns and those stresses a little bit better, rather than just like, oh my God, what's happening right now? I'm so stressed and I don't know what's going on. I don't have this. I couldn't plan ahead for this. One of the things I was going to mention is we would love to hear from you if you had pets when you had little kids or maybe right now. Let us drop us comment on good pods or on social media and let us know how it's going. I'm curious because it's not something Chris and I got to experience. That's Pet Science for this week.

Speaker 1 20:25

Hello everybody, here's some ways you can keep the science podcast free, number one in our show notes. Sign up to be a member of our Paw Pack Plus community. It's an amazing community of folks who love pets and folks who love science. We have tons of bonus Bunsen and Beaker content there and we have live streams every Sunday with our community. It's tons of fun. Also, think about checking out our merch store. We've got the Bunsen Stuffy, the Beaker Stuffy and now the Ginger Stuffy. That's right, ginger, the science cat, has a little replica. It's adorable. It's so soft, with the giant fluffy tail, safety glasses and a lab coat. And number three, if you're listening to the podcast on any place that rates podcasts, give us a great rating and tell your family and friends to listen too. Okay, on with the show. Back to the interviews. It's time for Ask an Expert on the Science Podcast and I'm delighted to welcome Stephanie Duesing, who is a author, speaker and international advocate for people who have cerebral cortical visual impairment. Stephanie, welcome to the show.

Speaker 3 21:35

Hi Jason. Thank you so much for having me on your show today. I am so grateful for this opportunity.

Speaker 1 21:42

Oh, yay, Like we connected very quickly through Facebook and like the story that you said was very impactful and I was like man, I bet you people would love to hear this and probably it affects folks that maybe don't even know it affects them and we'll get to that. So I want to thank you for being on the show.

Speaker 3 22:01

Thank you, and I thank you so much for recognizing the reason that I am here today is because we did have an incredibly difficult, challenging time in our family, and what we realized as we were getting towards the end of that journey is that actually what happened to our family is a really common experience for people with this condition, and so I'm here today not to talk about our story so much, but to help raise awareness about what goes on every day for tens of thousands of people across the United States and millions of people internationally. So, thank you, this is really important to me to be here and I really am grateful for this opportunity to speak about cerebral slash cortical visual impairment.

Speaker 1 22:42

Awesome, yeah, and we're. I'm just thrilled to have you. I'm a curious person. It's not something that's on my radar, and I hope to learn something too. That's my, I guess. The first big question is can we talk a little bit about CVI? Is that the correct acronym for it, if I shorten it, or no?

Speaker 3 23:00

Absolutely yes, we call CVI, it's cerebral or it used to be known as cortical visual impairment but we do call it CVI, and I loved how you said it wasn't on your radar, because we tend to call CVI the common disability that no one's ever heard of, and so not only is it not on your radar, but it's probably not on 99% of the world's population's radar, so that's why it's really great to be here today. So CVI is a brain-based vision impairment. That's entirely different from ocular blindness. Ocular blindness is caused by damage to the eye and to the optic nerve, and there are a lot of stereotypes around being ocularly blind that aren't even correct for people with that condition. One of the major stereotypes people with ocular forms of blindness face often is that typically sighted people tend to think that being blind means that everything is black.

Speaker 1 23:57

Okay.

Speaker 3 23:59

And that actually is a stereotype about ocular blindness as well, and so the vast majority of people who have ocular forms of blindness still have some residual vision left.

Speaker 3 24:10

It might just be light perception, it might be some slice of their visual field, but the reality is most people who are ocularly blind don't experience total darkness as their visual normal. So CVI is a brain-based vision impairment. That's different from ocular forms of blindness. It's caused by damage to the visual processing centers of the brain. More than 40% of our brains are involved in visual processing, and in fact there has been research that has showed that it takes a tenth of a second after the light hits the retina at the back of the eye, that is transmitted into an electrical signal that travels through the optic nerve, past the lateral geniculate nuclei to the back of the brain. And when that signal finally reaches the back of the brain, that's when the first conscious perception of sight begins, and the reason that's important is because what that means is we literally do not see with our eyes. All conscious perception of sight happens in the brain.

Speaker 1 25:16

The signal goes to the brain. Your brain decodes it. Am I on the right track? That's right.

Speaker 3 25:21

Our eyes don't see anything on their own.

Speaker 3 25:23

Our eyes are literally just light collectors and they transmit that light into an electrical signal and then all of the conscious perception of sight happens within the brain. And in fact, humans don't even need eyes to see. There is a man named Daniel Kish who's a real person. He's been on 60 Minutes. You can Google him. It's K-I-S-H. Daniel lost both eyes to cancer in infancy and he taught himself how to echolocate like a bat or a dolphin. Daniel has no eyes, but he can ride a bike. Daniel has no eyes, but he can read if the letters are three-dimensional. And so when they put Daniel into an fMRI machine, which is a functional magnetic resonance imaging machine which shows not just what your brain looks like, it actually shows what your brain is doing. And so when they put Daniel into an fMRI machine, they showed that Daniel's visual cortex lights up when he hears echoes, but not when he hears ordinary sounds. And so they have-.

Speaker 1 26:27

Oh my goodness, like the sound reverberation, not the original sound.

Speaker 3 26:31

That's right. Yeah, so he's literally, he's seeing with echoes, just like a dolphin or a bat. Yes, so we see with our brains is not a slogan, it's an actual fact, and so I would like to talk a little bit more about how damage to the brain can affect vision.

Speaker 1 26:50

Can I just ask one quick question, stephanie? Absolutely, please do. Okay. So like I'm very interested in what you're going to say next, I so apologize for cutting in. No, this is great. Where does the damage occur? That was the first thing you said. Like there's damage. Is this in utero? Can this be from a car accident? Or is it any damage like any kind of head trauma type thing?

Speaker 3 27:13

I think anyone at any age can develop CVI from any type of brain damage. And so the most common forms of brain damage that we're seeing in children with CVI is caused by lack of oxygen shortly before birth, during birth or immediately or shortly after birth.

Speaker 3 27:33

However, it can happen from drowning, it can happen from strangulation, it could happen from severe head trauma. So this is something that can happen. Often we see it in people who have genetic abnormalities or differences, so they have differences in the way their brain is structured, so changes in that. So there's a lot of different causes, but basically anything that causes brain damage can cause CVI.

Speaker 1 28:01

Thank you. Okay, that's perfect, I'm good to go.

Speaker 3 28:06

So what is CVI and how is it different from ocular blindness?

Speaker 3 28:10

right so ocular blindness is what typically sighted people think about when they think about being blind, and they imagine that everything is dark and, as we talked about earlier, that's a stereotype. So for people who have CVI, it's actually common for them to have normal acuity, and so acuity is what they measure when you go to the eye doctor and you look at the big E on the eye chart, right, they're measuring how sharp your vision is. That is just one tiny slice of what vision is. There's a lot of pieces to vision. We have color vision, we can see movement, we can see depth and distance, we can see the acuity of things. Right, there's a lot of different pieces to vision.

Speaker 3 28:53

So what happens is when the light strikes the retina at the back of the eye and it's transmitted into an electrical signal, it travels through the optic nerve to the back of the brain. That's where vision begins, and what happens is we have two different streams of vision and if you imagine the dorsal fin of a shark on the top of the back of a shark, we have the dorsal stream of vision, which comes up from the back of the brain, up the top of the brain towards the top of the head, and that part of the visual processing system is involved in finding a person in a crowd, spotting a distant target, finding an object in a clutter. So imagine if you were looking for a pair of shoes and a pile of 20 shoes on the floor, those kinds of things, if you had a cluttered background. For example, I don't know if you remember that children's book called Where's Waldo?

Speaker 1 29:47

I love Where's Waldo? My nieces and nephews are obsessed with those type of books. Find the things. Find the things. Yeah, okay, I talked about this actually in my science class the other day. That's why, like people within their own culture are really good at seeing the differences within their own culture, within faces, and then if you go outside your culture, you're like everybody looks the same, but it was like you have a huge advantage of you need to know who the differences are of the people you're all around, to find your parents, kind of thing. So it's like an evolutionary trick.

Speaker 3 30:22

Oh, that's so interesting, I like. I know that the zebra babies can find their zebra moms right.

Speaker 1 30:27

Yeah, exactly.

Speaker 3 30:28

They all look the same to us right.

Speaker 1 30:30

Yeah, we know it in seconds.

Speaker 3 30:32

Yeah, yeah, so that's the dorsal stream. So that's that part of visual processing. But there's another part of visual processing called the ventral stream, and again it originates at the back of the brain and then comes through the central part of the brain, and the ventral stream is where conscious visual recognition takes place, and different parts of the ventral stream are involved in recognizing different things. For example, if you take your right hand and you touch above and behind your right ear, that's where the right fusiform gyrus of the brain is and that's where facial recognition takes place. People who have damage to the right fusiform gyrus of the brain very often have a condition called prosopagnosia or face blindness. Face blindness is the inability to recognize other people's faces. It can be so severe that you cannot even recognize your own, and so, depending on where your brain damage is located, different people have different symptoms of CVI.

Speaker 1 31:38

That's a real condition. I thought that was I was watching. We were big fans of Arrested Development and there's a character in Arrested Development who said they were face blind and I thought that was just a thing for the comedy.

Speaker 3 31:50

Oh goodness, no, it's okay.

Speaker 1 31:52

Sorry, stephanie, I was just a little, I'm just fascinated. I'm sorry to keep interrupting, no.

Speaker 3 31:58

I'm just fascinated, I'm sorry to keep interrupting.

Speaker 1 31:59

No, I'm so glad.

Speaker 3 31:59

I love having this conversation with you because, I'll be totally honest with you, I had never heard of prosopagnosia or CVI or any of this back in 2017. And so please don't feel bad, because just the fact that you didn't know it was real, the vast majority of people on this planet don't know it's real either, and that's why I'm here to talk about this and that's why I'm so glad, because it is a real thing and, in fact, the New York Times had an article.

Speaker 3 32:26

I think it was last fall, or maybe it was the year before. I've lost track. Anyway, one in 30 people are estimated to have prosopagnosia, so it's actually a really common symptom.

Speaker 1 32:37

Interesting.

Speaker 3 32:38

Yeah, one in 30.

Speaker 1 32:40

Yeah.

Speaker 3 32:40

So that's just one example, but different parts of the brain are involved in recognizing different things, and so there's a separate part of the brain that's involved in recognizing objects. There's another part of the brain that's involved in recognizing your surroundings, like your environment. There's another part of the brain that's involved totally involved in recognizing fingers. There's a finger agnosia. There are people alive and walking around right now who cannot recognize theirs or other people's fingers. It's so individualized.

Speaker 3 33:10

There are actually parts of the brain that are involved in recognizing words, letters, numbers and simple shapes, and one of the reasons that CVI has been so difficult to diagnose for so many years is because every person who has it. There are many commonalities amongst people who have CVI, for example, the dorsal stream dysfunction that we talked about earlier, with difficulty finding a person in a crowd, finding where's Wal-Mart in a crowded scene. That's actually a really common symptom of CVI, but one person may have dorsal stream dysfunction and be face blind, and the next person might have dorsal stream dysfunction and have no problem whatsoever recognizing faces, but they might not be able to read well because they can't recognize and form a visual memory of the letters and the numbers.

Speaker 1 33:59

They're letter blind. That makes sense If you can't see faces. Obviously there's other things that just are no go for you.

Speaker 3 34:05

Wow, that's right, and in fact I have a very dear friend in Iceland. Her name is Dagbjort Andresdottir and she's a lyric soprano. She didn't get diagnosed with CVI until she was 26 years old and she is legally blind in Iceland. She didn't get diagnosed with CVI until she was 26 years old and she is legally blind in Iceland. She didn't know she was blind until she was 26 because she was misdiagnosed. She was told she had autism and that she was intellectually delayed, and if you've ever spent 30 seconds talking with this woman, she's brilliant and you would know that immediately from talking to her and watching her perform on stage.

Speaker 3 34:37

She has an amazing voice and she's exactly what I was talking about. She has many symptoms of CVI, including lower visual field loss. So, for example, if you took both hands and put them like nose level under your eyes, if you could imagine not being able to see anything beneath your hands ever. So you've never seen your feet, you've never seen the stairs as you walk down them when you're in gym class, you can't see half of the other kids or the soccer ball coming at you.

Speaker 1 35:03

Your balance would be all askew.

Speaker 3 35:05

Oh yes, these people who have this are very commonly labeled as clumsy because they fall down the stairs.

Speaker 2 35:12

Oh it's horrific.

Speaker 3 35:13

What happens to?

Speaker 1 35:14

people. I would not be here talking to you if I had that condition. I am already clumsy.

Speaker 3 35:22

Well, maybe you have CBI, Maybe, maybe. Yeah, I have another. We have other dear friends in Vermont and, like my son, this child did not get diagnosed until they were. This child was diagnosed at the age, I think, of 12. And nobody had any idea they had any visual problems whatsoever. Because, like my son, they passed every vision test every year, because our optometric exams are decades out of date and they are only measuring acuity and colorblindness and visual fields and they're not measuring for CVI, and so this child is actually really severely visually impaired, blind, and this child has no ability to form a visual memory of letters or numbers. And they had tried every research-based what's it called dyslexia intervention. They were doing one-on-one research based dyslexia interventions with this child for years with no effect whatsoever, and I think it's been a year and a half, maybe two years now. They started Braille and this child is now reading at grade level for the very first time.

Speaker 3 36:28

Because, even though they can't form a visual memory of letters, they can form textual memories of the letters and they can feel the Braille and they can read and do math.

Speaker 2 36:38

Love it.

Speaker 3 36:39

Yeah, yeah, so that's CVI. It's different from ocular blindness.

Speaker 1 36:49

I'm glad I'm talking to you Like I've learned a lot and just from the just from that it keeps my, it keeps gives me an open kind of mind towards some things. I'm a I've been an educator, that's my job. I'm a teacher, I'm a high school chemistry teacher. So that's something for me to think about. In my education, if a kid is struggling, I'm like you know it's maybe beyond the simple. They need to just buckle down and study a bit more kind of problem. But we always try our best anyways.

Speaker 3 37:14

Beyond that, oh, I'm a teacher as well, and I know how much heart and passion goes into that career. And so, yeah, we do everything we possibly can. I saw a study recently out of the UK where the vast majority of teachers have never heard of CBI.

Speaker 1 37:28

Yeah, and it's just an education piece. Right, you can't know everything, but you should always try to learn every day. That's what I say.

Speaker 3 37:34

Exactly, and it's not your fault if you weren't taught about it.

Speaker 1 37:38

Now, stephanie, I was wondering if you could talk a little bit about your son. I know this is you wanted to more bring awareness about CVI, but your son is the catalyst for all of this.

Discovering Son's Face Blindness Shock

Speaker 3 37:49

Absolutely yes. So the reason the big reason I'm here today is because one of the things that I think is so important to know about CVI is that CVI can be an entirely invisible disability. In January of 2017, we discovered that my straight A honor student, genius, artist and water polo playing son, sebastian, was almost completely blind and nobody knew, not even Sebastian himself. He was 15 and just about to enroll in driver's ed. We were beyond devastated. It was absolutely terrifying.

Speaker 3 38:28

In January of 2017, I had never heard of CVI. I had no idea that it was possible for a child with normal acuity, who had passed every vision test every year, to be blind or almost completely blind, and I was just absolutely stunned, and I'll tell you a little bit about what happened. We happened to be going through old photos. My son is a very gifted artist who draws and paints with photographic realism when he wants to. We had no idea that my son had any disability of any kind and, in fact, my son had skipped a grade because he finished the fourth grade math book first quarter of third grade.

Speaker 3 39:10

And school came to us and told us that they could not meet his needs academically in the grade he was in. We actually fought the grade promotion for social reasons. My son had a wonderful group of friends in the grade he was in and we had absolutely no desire to tear him away from his friends. And I'd be totally honest with you, I'm not a homework mom. As a teacher, I don't actually believe in homework before the age of 12. Looking at the research, I've never seen any research that would show me that homework is effective or necessary before the age of 12. We were not coaching my son. This was something he just did on his own and we actually didn't know he'd finished the fourth grade math book until he wasn't coming home.

Speaker 1 39:52

And you're like time to get to work? Let's do some math all night. No, I'm just teasing, Stephanie.

Speaker 3 39:58

Right. His gifted teacher literally came flying out of the building Like it was the week before Christmas and it was like 20 degrees outside and she didn't have a coat on and she was like oh, by the way, we want to skip a grade because he finished the fourth grade math book. I didn't even know, he didn't even tell us.

Speaker 1 40:14

I love it. What a guy yeah.

Speaker 3 40:17

So if you know anything about grade promotion, you know that it's fairly rare in the US and you know, that they scrutinize every aspect of a child's development before they go through it, and so it's very rare in Canada as well.

Speaker 1 40:31

Yeah, until high school, in high school. Once the kids get to high school, if they can do things faster generally they're allowed to.

Speaker 3 40:37

Yeah, they look at every aspect of your child academically, socially, emotionally, psychologically, physically and my son sailed through the grade promotion process without triggering a single alarm.

Speaker 3 40:49

He was rated as extremely athletic by his PE teacher, and not a single person no doctor, no teacher, no friend, no family member, not one single person ever suggested to us that there was anything at all wrong with my son. We had no idea he had any disability of any kind. And so here I was, sitting on the sofa with my son going through old photos and my son is an only child and I am that mom who is not crafty and I managed to make him a baby book and that was it. I was done. Oh, I hear you.

Speaker 2 41:34

I have $1,500 worth of craft book making supplies in the closet behind me right now that never, ever, got used again.

Speaker 3 41:37

I have all the fancy scissors I was done, so we were literally looking at pictures we hadn't looked at for years, because I just don't do that and my son's an only child and we have family all over the place Canada, texas, missouri and so I was narrating to my son who was in the pictures, because there's a lot of people that we don't see a lot.

Speaker 2 41:55

And so.

Speaker 3 41:55

I was saying things like oh, we're looking at baby pictures. I was saying things like oh, look, there you are with your cousins from Canada that you haven't seen for seven years.

Speaker 3 42:03

Oh, look there you are with our old neighbors from the town we used to live in when you were two and we'd been doing this for half an hour and we'd migrated up into the toddler preschooler years and a picture of just this adorable picture of my son popped up on the computer about age three and I just said, oh, look, who's that? And there was crickets. And finally he just said how should I know? This is my son, my brilliant straight-A son, who draws and paints faces and everything else that interests him with photographic realism. And he said how should I know?

Speaker 1 42:42

It was clearly him to you.

Speaker 3 42:45

Oh, he'd been looking at pictures of his own face now for half an hour.

Speaker 1 42:48

Okay, okay, I see the progression Very obviously him.

Speaker 2 42:50

He's an only child.

Speaker 3 42:51

There was only one person. The focus of every picture was him.

Speaker 1 42:55

Yeah, so the random baby, I don't know, that's right, not the random baby.

Speaker 3 43:00

Yes, it was so obviously him. And so all the hair on my neck just stood up because I'd never heard of face blindness, I didn't even know it was possible for a human being to be face blind. And yet here was my son, not recognizing his very obviously his face, and I said so what do you mean? That's you? And he said, if you say so, and so that's when I realized there was something wrong and I started quizzing him about other people in the pictures myself, my husband, very close family members and friends, people that he sees all the time. And of course, we were younger, thinner, less gray hair, but still very obviously us.

Speaker 1 43:41

Gotcha, yeah, yeah.

Speaker 3 43:43

My son was guessing, very obviously guessing, guessing correctly, he was guessing.

Speaker 1 43:48

he would randomly guess a person he knows.

Speaker 3 43:51

He was guessing correctly, but he was very obviously guessing. As teachers, you know that when they're guessing and if they just happen to get it right, it's okay. He was guessing and so I knew there was something wrong. And it happened to be close to bedtime. He was in high school. Everybody went off to bed, but I was like I have to solve this mystery and I'm like a dog with a bone. So I just immediately, on my phone, started trying to figure out what, trying to find the right combination of words.

Speaker 3 44:17

Facial recognition problems with facial recognition and back in 2017, there was very little information I could find. It took me almost four hours I started around 10 o'clock and it was two in the morning when I finally got the right combination of search words, when I finally got because everything coming up with facial recognition was for software, right and finally I found it and it was prosopagnosia. And according back in 2017, this information was wrong, by the way, but I didn't know that in 2017, the National Institute, but I didn't know that in 2017. The National Institute of Health according to them in 2017, they were saying that prosopagnosia was a very rare condition, but it was real, and so I was like OK, my son has this very weird, rare quirk prosopagnosia.

Discovering Son's Topographical Agnosia

Speaker 3 45:04

He's face blind, but no big deal. It's just everybody has a quirk and he's got this thing and it can't be impacting him that much. The very next day, we figured out that my son had taught himself to navigate by counting his steps and turns and had been navigating our own home that way his entire life, since he was a toddler, and his very architecturally complex high school and all his other schools and our neighborhood by counting his steps and turns, and he had assumed that everybody did that, and that's when I got scared for my son, because my son-.

Speaker 1 45:37

How did that conversation go Like how do you get to your room and he's like I count 10, turn right. That's what he said.

Speaker 3 45:47

I think because we had figured out about the face blindness. We now realize that there was something off with his vision and that was inspiring other conversations about things. And we just happened to be talking we were literally about to enroll him in driver's ed, and so we were talking about we were actually considering buying him a car for his 16th birthday, and so we were having a conversation about Driver's Ed and I was taking him to an activity at a local church and he had said, on the way, is Driver's Ed where they teach you where all the roads go, where all the roads are? And I was like I don't really remember that from Driver's Ed long ago. And I was like no, I don't think so. I think you just figure it out as you go, not realizing that he had an issue right, oh man, that would be terrifying to him.

Speaker 1 46:35

He's what?

Speaker 3 46:36

Well, because, we know now that he has a condition called topographical agnosia. Topographical agnosia is an inability to recognize your surroundings. People who have topographic hypnosis cannot form visual memories of their surroundings, so they have no visual landmarks. So every time you walk into your own room or your own home, nothing ever looks familiar because your brain is not recording a visual memory of those things. So there's no visual landmarks. And so that's the condition, one of the symptoms that my son has of his CVI, in addition to the prosopagnosia. And in fact, if you've ever heard of the famous neuropsychologist, dr Oliver Sacks, who is the author of the man who Mistook His Wife for a Hat, in fact he was a prolific author and wrote many books and also was a central figure in the movie Awakenings I don't know if you ever saw that.

Speaker 3 47:35

Yeah, dr Oliver Sacks had a very similar situation to my son. He had face blindness and he had topographical agnosia, just like my son does, and so my son. Actually, we've known about this for quite a long time, and so my son. Actually, we've known about this for quite a long time. So, anyway, to get back to my son, we were talking about driver's ed, we were talking about how you know where things are and I don't know about you, but when I'm not driving, if my husband is driving, I don't pay attention to how I got from point A to point B.

Speaker 1 48:04

Yeah, it's kind of you teleport you just over here. Yeah, I don't of you teleport you just like oh, we're here.

Speaker 3 48:08

Yeah, we're here. I don't pay attention to it.

Speaker 1 48:10

And.

Speaker 3 48:10

I just thought my son's concerned about it. I'm like, once you start driving, that's when you start to pay attention, yeah. And so my son is very, very bright and on the way to this activity that I was driving him to, I just started introducing him to not only to the names of the roads, but also to the cardinal directions. So I was saying, okay, we're headed north on this street and we're going to make a left hand turn, so we're going to go whatever east on this street. And we did that for the entire 10 minute drive to his activity. And then when I picked him up two hours later and then I quizzed him on the way back in reverse and my brilliant son got every answer right. He every cardinal direction, he knew all the streets. And then we walked into my home and he had a complete meltdown on my kitchen floor and started sobbing and he said I just don't understand what the roads, what the names mean. I don't know where they are. And you have to remember, in 2017, I'd never heard of topographic hypnosis, I'd never heard of CVI. I had no idea how my son could not understand where the roads were, on roads that we drove on every single day, and so I was just completely flabbergasted and I just said I don't understand, I don't understand. And he picked up a notebook and a pen and he made a like a cloud bubble on one side and he put the names of the roads we had just talked about inside a cloud bubble on the other side. And then he put another cloud bubble on the other side and he I can't even remember what he put, but it was like the roads themselves and somehow I understood the names weren't connected to the actual roads, like he didn't actually know which road was which or where they were. And that was the first time I understood my son wasn't just face blind, but that there was something a lot more serious going on. But that there was something a lot more serious going on. And so I was determined in this moment to show my son where he lived. It just broke my heart to realize that my 15-year-old child, my brilliant, talented, academically able, artistic athlete, didn't know where his own home was in, compared to the road we drove on every day to take him to school. And that was devastating. It was just devastating. And I was determined to show him where that was, and all I could think about was the story of Helen Keller and Annie Sullivan, who held Helen Keller's hand under the water and signed the word water into her hand. And Helen understood that that sign meant water. And I knew my son needed to feel where the road was, because he obviously could not see it, just like he wasn't seeing his face.

Speaker 3 51:12

And we had a bowl of apples in the middle of our kitchen table and I pulled a bowl of an apple out of the bowl and I said this is our house. And I plunked it on the table and I said I don't know how many houses are on our street and Sebastian said seven. He knew exactly how many houses there were because he had counted, and so I pulled out seven apples and I lined them up and there was a thing of red yarn on the counter and I picked that up and a pair of scissors and I cut a little snippet of yarn and I put it in front of our house and I said that's the driveway. And then I cut a longer piece of yarn and I said this is our street. And then I cut another piece piece of yarn and I said this is our street. And then I cut another piece of yarn and I said and this is the street that connects it.

Speaker 3 51:53

And then it was winter, I picked up both of our scarves and I said and this is the bigger street, and I don't want to use our street names, but I said this is the bigger street. And then I used his scarf to cross that and I said and this is the one that we drive on every single day to take you to school. And I said you have to touch it. And I made him put his hand on our Apple house and I said you have to touch it. He kept trying to look at it. I'm like no, you have to touch it.

Speaker 3 52:19

And my son traced that bit of yarn driveway down to the longer yarn that was our street. And I said go left. And he traced that to the left until it circled up and it touched the other piece of yarn and I said go left again. And then he touched that new piece of intersecting yarn and I said when you get to the scarf, you have to come towards. You, touch the scarf. And he pulled his hand towards himself until it reached the other scarf. And then I said and now you have to go right, and that is the main street that we take every single day, and you, as a teacher, I know you've seen this. Look where they get it. The light bulb goes off and that's what I saw in my son's face.

Speaker 3 53:07

My brilliant artist son understood where the main street by his house was for the very first time, at the age of 15, because he could feel it, but he couldn't see it.

Speaker 1 53:21

Wow, that's what I was afraid for I have no follow-up questions, I'm just stunned.

Speaker 3 53:28

Imagine how we felt.

Speaker 1 53:29

Yeah, I can't. It would be such a baffling conversation as a normally sighted person to even wrap your head around that. It'd be like if a dog could talk, talking to them about how a dog smells right.

Speaker 3 53:44

I felt like I saw my child for the very first time. At that moment, that I understood my son for the very first time, because the only symptom that we ever had that there might be something wrong was what looked like mostly mild anxiety.

Speaker 3 54:08

My son had what appeared to be mild separation anxiety in early childhood. He cried every day at drop-off in preschool, every day, and he always settled down quickly and he was always extremely academically able. He was reading and writing. At the age of two and a half he was reading the original Nancy Drew stories that I remember struggling with when I was in third and fourth grade. My son was reading and understanding friends. He was engaging.

Speaker 3 54:38

He loved people we have photos of my blind son who can't recognize his face or anybody else's, making regular, consistent eye contact from his earliest days.

Speaker 1 55:00

So this is the end of part one of the interview. You'll have to check out next week's episode for part two with Stephanie Duesing. That's it for this week's show. Thanks for coming back week after week to listen to the Science Podcast no family section this week. Adam's under the weather, so you'll have to catch us next week. And also thanks to our guest, stephanie Duesing, and the Paw Pack. That's the top tier of the support community called the Paw Pack Plus. Check the link in our show notes to join up and hear your name at the end of the episode. Who are the top dogs? Chris, take it away.

Speaker 2 55:34

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