Raising a Blind Son and Finding Community with Kim Owens

Luisa Recchia: [00:00:00] Welcome to Through Our Eyes, a podcast from the Pediatric Retinal Research Foundation, where we share stories, experiences, and perspectives from individuals and families navigating vision loss and retinal disease. Today, I’m joined by Kim Owens, founder of Navigating Blindness, and the mother of a young man whose vision journey began unexpectedly when he was just 10 years old.

Like so many parents, Kim found herself entering a world where she never expected, one filled with medical appointments, unanswered questions, advocacy, education, and the uncertainty of what the future might hold. But over time, her family’s journey became about much more than adapting to vision loss. It became a journey toward independence, possibility, community, and learning to see blindness through an entirely different lens.

Today, Kim’s, Kim helps other families navigate many of the same [00:01:00] questions she once faced herself. Kim, thank you so much for joining us on Through Our Eyes. I’m really looking forward to hearing your story. 

Kim, I’m so happy to have you with us today. Thank you for joining us. As I was reading about your family’s journey, one of the things that really struck me was that this isn’t only a story about vision loss, it’s also a story about being a mom and suddenly finding yourself in a world you never expected to be in, trying to find answers, trying to advocate for your child, and trying to figure out what the f- future might look like.

And I think there are going to be a lot of parents listening, actually, I know there’ll be a lot of parents listening, who will recognize themselves in parts of your story. So rather than starting with where you are today, I’d love to go back to the beginning. Tell us a little bit about Kai and what life was like before you began noticing changes in his, uh, vision.

Uh, what [00:02:00] were those first signs, and, uh, what happened next? 

Kim Owens: Thanks for having me. Yeah, I’m happy to share our story. I- for me, in the beginning, it was so important to hear from other families, so I always love opportunities to share. Um, so Kai, he had typical sight growing up. He had had his eye scratched in kindergarten, so he had had several vision tests and he had a slight astigmatism.

So after that scratch, he ended up getting glasses. But he was getting annual eye exams. And at the age of eight, he became very just… it feels to me like it happened overnight, I, and I feel like it did. He just became scared, and it was so, it was so drastic because his nickname actually was No Fear Kai, because from the time he was born, really, like he was walking at nine months [00:03:00] old to keep up with his brother.

Like- Wow … he, he just wanted to do what the big kids were doing. And, um, so we always laughed and called him No Fear Kai. He would skateboard, he would do back flips off the diving board. I mean, he was super active. And then all of the sudden he didn’t wanna leave my side. He didn’t wanna go to school, and he had loved school.

And he started describing things in scary ways. Like, he would stand next to me and say, “W- what’s that?” And, um, and there would be nothing there. I wouldn’t know what he was talking about. And, um, it got so severe. His teachers were calling. We were… We had no idea what was going on. We took him to our general practitioner, his pediatrician.

Um, she thought he just had anxiety, and I’m like, “That doesn’t make sense.” Like, it came on so suddenly. But she kept trying to give him anxiety meds and allergy meds. [00:04:00] Another thing he was doing was he kept pulling on his eyes and pressing on his eyes. And we lived in a rural town. That movement didn’t set off any warning bells for anybody.

Um, now I know that it’s a really strong sign of sight loss in kids. So he would pull at the corners of his eyes so much that they were always teary and turning black and blue, and he was pressing on his eyes. Um- I, I still remember him playing basketball on this little team he was on, and he would just stop in the middle of the court, push his glasses up, and just press on his eyes, just stop everything he was doing.

And, um, you know, we were taking him everywhere. We took him to neurologists, we took him to a therapist, we took him to an ENT. I- we, we were going everywhere, and everybody was like, “This is anxiety.” And so then I thought something traumatic must have happened to him for something to change so drastically.

So the [00:05:00] therapist worked with him on that, and the therapist came back and said, “I really don’t think this is trauma. He- I really feel like there’s something physical going on.” And that’s what I thought. It, you know, I, I was like if this isn’t trauma, this is something physical because this is not just, like, anxiety.

Because it came on too fast. And, um, it turned out at Christmas, he was write- I asked the boys, he has an older brother who’s four and a half years older, I asked the boys to write their Christmas lists, and I noticed that Kai was sitting just curled over the table, and I had never seen him write like that before.

And as I came up behind him, I just figured he was really focused, so I wanted to see, you know, what is he focusing on? And I looked over and I noticed he’d started his list sort of in the middle of the page and all of the words jumbled on the right-hand side. And I said, “Kai,” I was like, “that’s really messy.

I don’t know if Santa’s gonna be able to read that.” [00:06:00] And I said, “Why aren’t you using the left side of the page?” And he picked it up, held it at eye level, then shifted it to his right and said, “Huh, I didn’t see that side of the page.” Oh, it still gives me chills. I threw him in the car, I literally threw him in the car, drove to our eye doctor, and I said, “I know you’ve checked his eyes a million times, but something is wrong.”

I told him what happened, and he looked further and he saw what he described as yellow flecks of pigment on his retina. And he had, he says he had never seen that before looking at Kai’s eyes. So that started us on this whole journey of figuring out what was going on with his eyes. He was initially diagnosed with retinitis pigmentosa, but…

So he was 10 when he was diagnosed. Um, so it had taken, I think, two years of trying to figure out what was going on. [00:07:00] And he was diagnosed at 10, but they kept saying, “Hmm, this is really atypical. It doesn’t usually come on as fast as that did.” Um, and they just really couldn’t figure, they just kept saying it’s just atypical retinitis pigmentosa.

He had, over the years, several genetic tests. They always came back inconclusive. And I met people with retinitis pigmentosa, and I did not think that’s what Kai had. So every year, I went to different, I took him to different university hospitals, different hospitals, and from the beginning I asked, “Could this be autoimmune?”

I have three autoimmune diseases, um, and my dad has autoimmune disease, my brother and the doctors all said, “No, autoimmune disease doesn’t affect the eyes of children.” When he turned 20, we finally found the right university doctor, and it turned out that Kai has autoimmune [00:08:00] retinopathy. That’s why it came on so suddenly, and, um, they did more genetic testing and found that he also has a never before seen mutation to his ABCA4 gene, which is typically like a Stargardts.

But Kai’s genes are a little, the gene mutation is different. So currently they’re saying that he has autoimmune retinopathy and cone rod dystrophy. So I know that was a really long answer to your story. But it was a long journey to figuring out what happened. But I will say, once we knew it was his sight, his personality came back.

It’s like he just didn’t know what it was, and once he had words for it, he would just tell his friends, “I can’t see that. I can’t see that.” And that seemed to really calm him back down, and he went right back to doing all the things he loved, which the anxiety, I think, was really the hardest part on all of us.

Luisa Recchia: Wow. [00:09:00] Wow, wow, wow. And that was over two years from onset? Over, 

Kim Owens: yeah. Wow. Yeah, I think the anxiety onset was, like, seven or eight, and he was diagnosed at almost 11. 

Luisa Recchia: Mm-hmm. 

Kim Owens: Um, so it was a long time of seeing … I mean, he had MRIs, he had ultrasound. We tried everything. Nobody could figure it out.

Mm-hmm. He’d been to the eye doctor repeatedly. Nobody could figure it out. 

Luisa Recchia: Wow. 

Kim Owens: Yeah. So I’m, I’m always telling parents, you know, if it, something comes on suddenly and you don’t have genetic sight loss anywhere in your family, and it doesn’t f- you know, your child’s diagnosis doesn’t really fit into a box, get that autoimmune retinopathy panel.

I was told repeatedly it couldn’t be autoimmune, and honestly, they ultimately told us that there’s a chance that if he had been diagnosed properly [00:10:00] early and had autoimmune treatment, that he would’ve been able, they would’ve been able to save his sight or slow down the sight loss. We can’t be certain of that because he also has a genetic component.

So the whole thing was a mystery, and still is really. 

Luisa Recchia: Mm, mm. Wow. So tell us again, what would you tell parents who might be going through what you went through? 

Kim Owens: I- if there’s something going on with your children’s sight, or even just something going on with their behavior I would trust your gut.

From the very beginning I was asking doctors if this could be autoimmune, and they just said no. It’s in his records as far back as I can go. “Mother is insisting this could be autoimmune. We’ve assured her it’s not.” So I would say trust your gut. I would say don’t give up. And I guess I would also say- I wasn’t good at this.

I’ll also say don’t let it take over your life. I [00:11:00] definitely got to a point where I had to say, “Okay, once a year we’re going to doctors. We’re not… We know it’s his sight now. I’m not confident that the diagnosis is right, but we know how to accommodate him right now. And so once a year we’re doing this.

We’re gonna s- look into this.” Um, because it really could have taken over his whole childhood. 

Luisa Recchia: Yeah. So talk a little bit about accommodating him. What does that mean? 

Kim Owens: So for him early, he was a really, he was a really strong reader. And so he had to learn how to read differently.

Um, he had to learn braille, learn assistive technology. And it’s funny because in that mystery timeframe, none of us realized he had stopped reading. He’d stopped reading for fun. So there’s so many things I look back on and I’m like the pressing on the eyes, the stop- stopping reading for fun, the anxiety there, there were a lot of signs that we all missed.

But, um, the [00:12:00] accommodations to start were to use a cane, white cane training. He had an orientation and mobility specialist, and, um, learning braille and assistive technology. That was the very first thing we started with. 

Luisa Recchia: Would you change any of that? 

Kim Owens: No, I would not. And a lot of… I hear a lot now of people saying that their child doesn’t need braille, but I will say braille helped Kai immensely through school.

Math and science, it… There are so many things about sight loss that were emotionally hard, but the main thing I didn’t want is for sight loss to take away more than his sight. So I was like, “He loves to read. He loves school. We are going to make school as accessible as possible.” And so I do not regret him learning braille.

He was able to take AP classes in high school because he had braille. He was able to learn to [00:13:00] read sheet music because he had braille music. I feel like the most important part of his education was making sure he could access information in a variety of ways, and braille’s just one of those. So he had braille, he had screen readers, and he was using the white cane. 

Luisa Recchia: Tell us about valedictorian.

Kim Owens: He became valedictorian. Um, from an early age he was super precocious and curious, and he was a good learner. So it… looking back, it’s shocking that he became valedictorian because we were fighting for access the entire time, but on the other hand, it’s not shocking at all because he had access, and he was bright, and that was a goal of his.

So he got it, and it was very, it was a very exciting time. Um, and that also opened up a lot of doors for him because in Georgia if you’re valedictorian, you basically get a free pass to go to any of our state [00:14:00] schools, your choice. He was able to go to University of Georgia. His tuition was paid through the Zell Miller Grant.

He met his goal, which then had a big payoff for him 

Luisa Recchia: Oh very nice. Very nice. What do you wish teachers administrators really or any other professionals understood about educating a child who’s blind or losing their vision? 

Kim Owens: I think I wish they understood how important access is.

Access and inclusion in lessons. Um, there were so many times in school where the administrators just wanted to sideline him. Like, ” He can’t do that level of science, you know, we don’t have what he needs to, to be able to make it accessible.” And it’s like, “Well, that’s not his problem. And that’s not my problem. That sounds like a you problem.”

So we were fighting a lot. We were fighting a lot against budgetary constraints and just people who [00:15:00] felt like, ” I mean, we can accommodate him in the regular class. Why should he take an honors class? We don’t have what he needs for an honors class.” And so we were just constantly fighting for what he needed.

Luisa Recchia: So advocating is really key, right? I mean- 

Kim Owens: It’s so key. It- It’s so key for parents to understand what their child’s rights are. 

Luisa Recchia: Mm-hmm. 

Kim Owens: And it’s also so important to involve your child in the IEP process and teach them how to speak for themselves and what they need. It’s one thing if I’m saying he should be able to take that class.”

It’s another thing if he’s saying, “I’m bored in that other class, and I want to take this class. I want to go to college. Um, I need this,” so the administrators were more likely to bend when the words were Kai’s.

And so having him involved from an early age was really helpful. 

Luisa Recchia: Oh.

That’s [00:16:00] important. That’s important. Talk a little bit about, you mentioned he has an older brother? 

Kim Owens: Yes. Ugh. Yeah, I gotta take a deep breath for that one. Um. They are so close. They are the best of friends.

They travel everywhere together, but there were hard times. And people warned me. It’s like you get warnings, but, like, in the moment you can’t necessarily apply them to yourself. I remember people saying who had a, this one family who had a blind son. I don’t remember. I never met the child, but they had sent me this letter saying, “We just want, we wish somebody had told us this.”

And it was basically your disabled child is not more special in the family than your able-bodied children. And, you know, you forget that when you’re battling for access, and you’re, and you, there’s all these new things that that kid needs to learn. But, I always, I felt like, well, my older son, his name’s Cash, I [00:17:00] felt like, “He’s great.

He’s doing good. He, it’s fine if I focus over here.” But that was real, like a real reckoning he and I had to have about that, and I could see all the ways in which I was so focused on what Kai needed that Cash could have felt abandoned at that time. So thankfully we’re big talkers, clearly, in my family, and, um, we, you know, after Cash and I had those conversations, I really listened, and then really started involving him in more.

So the way we went about that was when Kai had the opportunity to do, like, some cool independent trips, his brother went with him, and they did fun stuff together, and they really bonded and created their own relationship, and that, that was really helpful. They went, I remember they went to Erik Weihenmayer’s, um, New York summit together, and they had so much fun.

So we tried to make special [00:18:00] opportunities for them to experience life together.

Luisa Recchia: Yeah, it sounds like you, you did a lot for them and were a part of them being together. How important was community? 

Kim Owens: Community is so important. So Kai and I, when he turned 16, we co-founded a platform called Navigating Blindness, and it was to share what we had learned, but also we live in a rural area, and he was w- the only blind and visually impaired kid his age, or really even older.

We, there was one coming… There was one little boy who we’re still close with who was coming up after him. But, you know, Kai was, like, paving the way a lot of times, and so we felt alone a lot. You know, I got on the Facebook groups, and I got on some Listservs and started getting information, and then started sharing that information together, he and I, on our social media and our, in our blogs.

[00:19:00] And it helped immensely, because we met so many people and had so many opportunities that we would not have had, had we not put ourselves and our story kind of out into the world. It really changed things for us. He had several, like, incredible mentors and role models and was able to do things with them.

Like, Joe Strechay was his, like, number one mentor. I don’t know if you know Joe, but he’s a producer. He’s blind, and he’s a producer. Um, he was working on this, um, he was working on this one project in Vancouver, British Columbia. We’re in Georgia, and my boys flew out to see him and went on the set with him.

And through our social media, he met Anthony Ferraro, the blind skateboarder, and Kai loved to skateboard, so he went to Detroit and the, the boys went to Detroit together and did things with [00:20:00] Anthony. Um, Justin Bishop, a skateboarder also who’s blind. Kai just had so many interactions with people that we met through our online community.

And living in a rural area, it can be really lonely. I’m sure it can be really lonely even in a city when you’re so, when you have such tunnel vision on, on access. But it really broadened our scope to have the platform online. 

Luisa Recchia: Wonderful. Where do we find Kai today? 

Kim Owens: Um, well he has… So we have the platform together, Nav- Navigating Blindness. We’re on Instagram and Facebook, and he has his own Instagram as well. It’s kai.owens. And, um, you’d physically find him at grad school. He graduated from the University of Georgia, and I’m actually just still exhausted from it.

He and I just moved him and all of his stuff to New Jersey for grad school, and then I just came home. So yeah he’s continuing to just live the life [00:21:00] he, he wanted, he wants to live, and I love it.

Luisa Recchia: Beautiful. Beautiful. If you could sit beside Kim Owens, whose 10-year-old son had just begun losing his vision, what would you tell her today?

Kim Owens: Oh, I would tell her that my fear is not his fear. Mm-hmm. And so it’s super important not to put my fear on him. And you know, let him lead the way, and thankfully I learned that along the way and got out of his way. Just listening and responding to his experience. I’m not blind. I don’t know what it feels like to go through what he’s going through.

So you know, listening, responding with ways to do what he wants to do with the proper accommodations and the proper safety and the so- proper training. I’m really glad that I learned that pretty early on. 

Luisa Recchia: What is Kim Owens doing these [00:22:00] days? 

Kim Owens: I’m actually getting ready to take my first trip to Europe with a group of six women, and they’re all blind and visually impaired.

I’m the token sighted person. We laugh about that. I met them all online and at different conferences over the years. And we’re taking a tour vacation with a company called Seable. They do tours specifically for people who are blind and low vision. And I’m going to share the experience as a parent to talk about how this kind of tour would be great for families to experience it.

And then the women who are going along with me, they will have orientation and mobility specialists provided by Seable Tours. So it’s a full sensory experience, and I’m excited about it. 

Luisa Recchia: I love it. I love it. Oh, Kim, such a such a story that came out of- Yeah … probably a moment in your life when you didn’t know, right?-

Yeah … uh, what the [00:23:00] future was gonna hold for you, and here you are, uh, living maybe your best life. 

Kim Owens: Yeah, yeah, I do feel that way now. Um, but it’s, it’s not easy, so I do think- Community is, is just so key. Community is what really turned things around for us. 

Luisa Recchia: Yeah. So Kim, tell us, is there anything else that you’d like to share with us that I either didn’t ask or, or, uh, oversight on my part, but what would you like to share?

Kim Owens: Well, I think you asked the question, but I think it would be great for me to give an example of how Kai uses braille in the real world, because we just keep hearing that kids don’t need braille, and it’s just not true. So Kai is a jazz drummer. He, um, he’s in graduate school now for that, but when he was at UGA, he was a manager for a band called Swing Theory.

And so he was responsible for getting the gigs, um, making sure that everybody showed up, and calling the songs in the set [00:24:00] list. And braille helps him so much. He will braille out his set list, and he’ll tape it to one of his drums so that as he’s playing, he can easily keep in order what is happening.

So he uses it for organization all the time. He’s like, “What would I do if I didn’t know braille? I, I couldn’t really have my computer up here on screen, and I already have ear protection in, so I, you know, I couldn’t have something talking to me.” So he loves that he has access to braille for things like that.

There’s so many uses, and when you look at the stats, the majority I don’t have the stats on, on, you know, the top of mind, but the majority of people who are blind and low vision who are holding, who have jobs know braille and use braille still to this day, even with assistive technology. So I would encourage parents to learn more about the uses of braille in the modern day, and then also [00:25:00] to fight for it.

It’s just the more ways our kids have to access the world and navigate the world, the better. 

Luisa Recchia: I love it. I love it. And it sounds like you’re now certified as well. 

Kim Owens: I am. Okay. Yeah, I did that actually thinking, “I can’t fight this hard for braille in college,” but he hasn’t needed me one time. Not one single time.

But I love that I know braille, too, and I am able to do some, some work doing braille now. 

Luisa Recchia: Beautiful. Beautiful. Thank you. 

Kim Owens: Thank you. 

Luisa Recchia: Kim, thank you for sharing your story so openly with us. One of the things I hope families take away from our conversation today is that a diagnosis may change the path you imagined for your child, but it doesn’t define what their life can become.

Your journey also reminds us how important it is to ask questions, advocate, find community, encourage independence, and perhaps most importantly, allow our children to discover what is [00:26:00] possible for themselves. For our listeners who would like to learn more about Kim’s work, you can find her at navigatingblindness.com, where she shares resources, stories, and support for families navigating blindness and vision loss.

And to everyone listening, thank you for joining us for another episode of Through Our Eyes, brought to you by the Pediatric Retinal Research Foundation. Our hope is that by sharing these stories, no family feels they have to navigate this journey alone. Until next time, thank you for listening.