Welcome back to the podcast, my friend. Today's episode is a very special treat. I don't think we've ever done this before. What we're doing is we're taking one of the presentations from the symposium and offering it to you. This isn't your typical symposium presentation. This is a conversation with a mother of a now adult with a visual impairment. And it really sheds light into what parents go through, and how we can show up better for them. Because ultimately, as you know, our job is to serve, and in order to serve the student, we also have to be there for the parent and she gives really great advice and really, really great perspective. And I got some strategies in there too. I pulled them out for us, I pulled them out. I knew you had to be involved in this conversation.

In this podcast episode:

• Who is Kim Owens?

• Kai’s Valedictorian Speech

• Challenges Kim and her family faced when Kai became blind

• Kai’s diagnosis

• Kim’s social media community

• A in ACT, Acceptance

• C in ACT, Community

• T in ACT, Tools

• Kai’s College Experience

• A challenge in getting car rides

• A message from Kim, as a parent

Transcript of the Episode:

So thank you for being here. I want to introduce you to Kim Owens. Kim is a chronically-ill woman living with multiple immune diseases. She and her husband Chris have been married for 25 years and live in coastal Georgia. Their oldest son Cash is a typically sighted geologist living in and working in Houston, Texas. Their youngest son Kai is a blind college student attending the University of Georgia studying to become a music theory professor and jazz musician. Kai lost his sight at the age of 10 due to autoimmune retinopathy and Rod cone dystrophy.

In 2018, Kim began a blog and Instagram account called Navigating Blindness. The blog and social media feature stories written by Kim and Kai, along with many others in the blind and low vision community. She wholeheartedly believes that we are stronger when navigating blindness together and spends many hours mentoring parents of blind kids to help them accept their child’s diagnosis, connect to the community and gain the proper tools for access. She is a strong champion for Braille literacy and became a certified braille transcriber in 2021.  She also manages Kai's online store, www.eyeswearapparel.com, blindness advocacy with a twist.

She spent the last year writing a memoir about raising a blind son in rural Georgia called Blur, Navigating Blindness from Isolation to Inclusion. The book is in the editing process with plans to publish in print Braille and audio and 2023. To learn more, please visit… you can go to linktree and navigating blindness. I will put the link in the show notes. So you can go to her website, navigatingblindness.com or follow her on social media which I highly, highly encourage you to do. Because it's not just about our platform, but how she views parenting a child with a visual impairment. And her whole aura honestly is just really striking. Without further ado, please enjoy this conversation with Kim.

Who is Kim Owens?

Kassy:
Hi, Kim, I'm so glad that we get to finally sit down together. This bonus presentation is going to be really fun and interesting because we get to have a conversation, learn about you, your son, your expertise and your insights. But first, will you tell us a little bit about yourself?

Kim:
Yeah, thank you so much for having me. I'm excited to be here with everyone. So my name is Kim Owens and I'm a blogger. I have a blog called Navigating Blindness. I started the blog in 2018 when my son turned 16. And I felt like he would be able to, you know, consent and participate and you know, be involved in the blog.

So a little bit about him, he lost his sight unexpectedly at the age of 10. And we have no blindness in our family. So it was a complete shock and a huge learning curve. So a lot of what I blogged about is our experience navigating blindness.

Kassy:
I like that you consider yourself a blogger. And I have to say, I wouldn't. I consider you an expert, not just a blogger. You're an advocate, you're an expert, you have all these life experiences that everybody who has somebody with a visual impairment in their life at all can really draw from and you are just so inspirational and how you come off. So I don't know.

Kim:
Thank you for saying that. I guess at this point, I am sort of an expert in raising a blind child and I love to share my experience with orientation mobility instructors, TVIs, the medical profession and especially other moms. I have a real heart for helping other moms, especially with navigating through the public school system. And I guess I'd also add that I'm married, I've been married for 25 years, and I have an older son who's typically sighted. So his name is Cash and he's 24. And then my son who is blind is 20 and his name is Kai.

Kassy:
Wonderful. Well, before we get into too much about Kai, you had shared with us his valedictorian speech, and I think we should play it. Will you introduce that speech to us before I play it?

Kai’s Valedictorian Speech

Kim:
Sure. It was really the culmination of all of our hard work, you know, I felt like I was up there with him. He did an amazing job, it was so fun to watch him lead his entire school, his entire class out onto the field with his white cane. That was really exciting. And then he got up on the podium, and you know, he gave the speech, and then he came back down. And we're just so proud of him and all of his hard work.

Kassy:
Yeah, it is absolutely amazing. So let's try and see if it'll play here. It's on your Instagram, navigating blindness.

Kai’s Valedictorian Speech:
Hello, everyone, and welcome to the graduation of the class of 2021. My name is Kai Owens, I'm the valedictorian of our class. And somehow, we made it through these past 12 years of our life, especially this past year and a half has been extremely difficult with the pandemic and all of its associated hardships, including all of the Mental Health battles that a lot of us have struggled through.

So for those of you who don't know me, I'm legally blind. I started losing my vision when I was nine years old to a degenerative eye disease. And now, eight years later, I basically have no usable sight. And I'm entirely reliant on Braille and assistive technology. So throughout my time, as a kid, I kind of developed a methodology to make it through the challenges that I had to face to achieve my goals. So I had goals of excelling in school, and becoming a professional musician.

So I knew from the beginning that I would have to learn the skills to make that happen. I had to basically relearn everything up until that point, and going forward as a blind person. I had to relearn how to read, how to write, how to get around safely. I'm not even reading a speech right now, because my Braille skills aren't fast enough yet. So I had to memorize all this.

So having to face all these goals and challenges showed me that I had to break it down into the absolute smallest pieces possible. I didn't think about my end goal. I didn't ever think about what… whether I would be able to make it all the way or not, I just thought about what I could do in that exact moment to make it through that challenge and work towards my goals. I never thought about needing to learn the entire Braille code, I thought, hey, let's see if I can learn this one symbol or maybe two. And this led me to a lot of success.

A lot of times I see people who see the end goal and immediately get overwhelmed before taking the first step. Let's say you're scrolling through Instagram or something, you come across a post of someone who has achieved every goal that you want to achieve. And it seems impossible, because to us, their success was nearly instantaneous. We don't see the hundreds or 1000s of hours of work that go into success. We have to put in the work. Everyone has to put in the work.

I know this because I had to do it myself. I'm the valedictorian of the school. I'm also going to UGA in the fall as a music theory major and percussionist. I'm also legally blind. Everything is possible and we are capable of achieving our goals. I'd like to say a massive thank you for everyone coming out to celebrate our graduation, and an even bigger thank you for everyone who's made this possible including our families, friends, teachers, and administrators, faculty and staff. I'd like to say a special thank you to my personal support team. Without you, I would not be standing up here right now giving a speech. Class of 21, let's go into this world, make our dreams come true, and make the world a better place.

Kassy:
How beautiful.

Kim:
I know. It still chokes me up.

Challenges Kim and her family faced when Kai became blind

Kassy:
As a mom, you must have been so proud that your son became valedictorian, especially given all of the challenges that you and your family had to face, you know, almost in the middle of the road to get there because he became blind at 10. So he had to switch his way of living.

Kim:
Yeah, it was really difficult. We live in a rural county in Georgia, not too far from the coast. And we really, you know, we had no experience with blindness. And when we found out his diagnosis, the school said they had no experience with blindness, they had dealt with some visually impaired kids, but never somebody with progressive sight loss. And so it really was a challenge the entire time. And my husband works for the school district too. So it was always like this tightrope walk of how far can we push? It was a challenge, but so glad that we made it. We made it through.

Kai’s diagnosis

Kassy:
Oh, my gosh, and it doesn't seem like you just made it through, you didn't just survive. Your family is thriving, and your son is thriving. And I think that's one of the really cool things about this situation.

So can you tell us a little bit more about Kai's sight loss and his diagnosis and everything you guys went through at that time?

Kim:
Yeah sure. So Kai was known as no-fear-Kai. That was always like what we, in the neighbors, called him. Sort of his nickname because he had no fear. Since the moment he was born, he wanted to keep up with his big brother. And I think that's pretty typical. Cash was four years older than him. So Kai was always looking to Cash and trying to keep up.

And all of a sudden, when he was like, 8 almost 9, his personality changed overnight. All of a sudden, he was so afraid, he didn't want to leave my side. He didn't want to be in the dark. He didn't want to sleep alone. His entire personality changed. And it was so frightening, because we didn't know why. And he didn't know why. And we kept thinking there's maybe some… something that had happened that he didn't want to tell us. And so there was just all this fear around what was happening.

We ended up taking them just to our regular doctor, and they listened to us. And they said, as just anxiety. And I was like, ah, there's like… No! this came on so fast. It's got to be something else. And so, you know, we kept going back to our regular doctor saying, you know, something needs to be done.

And then he started pushing and pulling on his eyes. Well, I now know that like, pushing and pulling is called the ocular digital sign. And it's one of the first signs of childhood blindness. But our doctor hadn't seen it or doctor didn't know. And so they prescribed allergy medicine and anti anxiety meds. And I was like, No, that's not what's happening here. So we just continue to seek out specialists.

And we ended up seeing a therapist who directed us to a neurologist to, you know, did brain scans and it took an entire year. And the doctors at the end of that year, threw their hands up, they had no idea what was happening. And by this time, it was Christmas, and he was on break. And I asked him to make a Christmas list. And he sat down at the table and started writing. And when I looked over his shoulder, I noticed he was starting writing in the middle of the page. And I said, Kai, why are you starting in the middle of the page and scrunching everything up on the right. And he said, he went just like this? Huh, I didn't see that side of the page. And I like… I had already been taken him to the eye doctor. He wore glasses for a slight astigmatism. So we had a regular eye exam.

So I threw him in the car that day. Drove to the eye doctor. Insisted they saw him right away. And that's when the doctor realized that he was seeing some kind of flecks of pigment on his retina that either he had missed or hadn't been there previously. And it turned out that day, he was already legally blind. He had lost so much peripheral during that year of us trying to figure out what was happening.

So then that led to more eye specialists, more testing and he was given a diagnosis of retinitis pigmentosa, but they kept calling it a-typical. And everything I read about retinitis pigmentosa did not seem like what we were dealing with. So for the last nine years, that was a whole nother journey of genetic testing and specialists.

In 2020, we finally got a definitive answer. He actually has four mutations to his ABCA4, which typically is a Stargardt's, but he has one mutation that they've never seen before. And they didn't understand how important it is. But now they, you know, they're starting to. So it turns out, he's lost his peripherals to autoimmune retinopathy. And he's lost his central sight to something similar to Stargardt's.

Kassy:
Wow, that is really interesting.

Kim:
Yeah, he's the only known person with these specific mutations. And further genetic testing has revealed that it's recessive. My husband and I both contributed to the genetic sight loss. And then I happen to have three autoimmune diseases. So all along, I was asking, could this be autoimmune? And they said, no, no, no. We'll finally in 2020, a doctor finally ran the proper test out of Oregon University. And they found that it was actually autoimmune retinopathy plus genetic sight loss. 

Kassy:
Wow… That is… You’re right. That is thus very unique. So what is the prognosis now? What is his vision like now? And where do you expect it to go?

Kim:
Well, they really don't know, since they've not seen this before. But given the fact that he's lost such a significant amount of eyesight in the last 10 years, they do believe he will eventually be totally blind. He currently has a tiny spot of vision that he can utilize in his left peripheral. It is a small spot. And then other than that, he has light perception. And he navigates with a cane and a guide dog at college and he's doing great.

Kassy:
Yeah, it really does seem like it. And I gotten to know of Kai from your social media, which you're really active on. And it's really helpful as an O and M specialists to see this side of the parent, you know. I think that as O and M specialists, we all have our own stressors, you know, but we can get so bogged down in… there's this triangle that the OT profession uses called the pyramid of learning that I lean on a lot. Where the top of the pyramid of learning, it's kind of like a glacier, you can see the top of it and those are the skills that we see.

And oftentimes, we are so stuck in, I have to meet my IEP goals, I created these, the parents trusted me. And it looks really bad on us when we don't meet them. And I even just said… like you heard that for an answer, that we don't meet them. But really, when we look at the whole person, and everything underneath, it's everything that they are going through as a person. And that in and of itself, is even really short sighted just to see just that one person, because you have the whole family, you have the whole team.

And as O and M specialists, we are with our learners only 1% of the time. But a lot of times the expectation is travel skills are all on us. And it's hard to have the relationship if you have 20 different sets of parents and most families when they go through diagnosis, they don't stay together. You guys are extremely extraordinarily strong in that manner. Because visual impairments often split the family apart. So we have multiple different families and parents to communicate with. And being able to see your side of it on social media is really helpful as a reminder of that's right, I am not the expert. It may feel like according to the team, this pressure is on me, but I'm not. It's the kid and the parent. And we are really here to serve them.

Kim’s social media community

Can you tell us a little bit more about your social media navigating blindness?

Kim:
Yeah, like I said, we started in 2018. At that point, I really wanted to build a community and be communicating with other parents. And, you know, I felt like he was old enough to understand the implications of putting our story online. So we actually worked together, really collaborate on everything that we publish and post.

I have about 6000 followers now between Instagram and Facebook, and the majority of those are parents but I also have a lot of doctors and O and M specialists and TVIs that follow along, which is a wonderful. I love having communication and relationships with all of them. We share like encouragement and resources.

And, you know, over the years, I really sort of boiled down our message to three parts, which is I call it ACT, which is acceptance, community and tools. So I really try to keep our focus on that, and also featuring people who are blind, and living and working. And, you know, thriving, really, just to raise awareness about blindness in general.

Kassy:
That's amazing. You and I love to talk, you know, not in this… how did you come up with such concise messaging, sometimes I'm like, I want to share everything. And it's hard to just like, make it concise.

A in ACT, Acceptance

So within acceptance, I was thinking about that as you're going through his story, just about, you know, being a parent. And I love the fact that you're talking about acceptance here. Can you tell me what you mean by acceptance?

Kim:
Yeah, so in boiling down the message, I really sort of brain dumped everything out and found that like, all of these things fell into these three buckets. And with acceptance, truly, I'm talking about parental acceptance. In my opinion, it's just my opinion, I've had people challenge me on this, I truly believe that our kids are just so intuitive, and they follow our lead. 

So as a mom, you know, if I'm afraid of a white cane, or don't understand the value in Braille, or, you know, just don't understand the importance of an IEP, and having my child involved, you know, he's not going to understand it, he's gonna feel my hesitancy. If I feel shame about any of those things. He's going to feel that, and he's going to experience that. And so in my mind, it was just so important for me to do the work that I had to do to accept his diagnosis. 

Yeah, you know, everyone asked, you know, are we looking for a cure, ideally, there would be a cure, but there's not, you know, and he has such a rare form of blindness that even if cures do come his way down the road. And even not knowing what we were dealing with, all I could think about was the fact that, you know, we had to deal with the now. We couldn't really think about the future. I couldn't wait for a cure, which is what it seems like everybody wanted me to do. I couldn't wait, like his experience, his life, his education, everything rode on the fact that he needed the skills, and he needed the connections. And acceptance is just such a big part of that.

So, you know, over the years, I've met with a lot of parents one on one. And, honestly, I can't think of a single time I've met with a family. And the challenge has not fallen back to parental acceptance. And I just don't think we talked enough about that, about how important it is. I have a couple examples of people that you know, that we've met. And, you know, acceptance is just such an important thing. But it's also an ongoing process, especially for parents, with children with progressive sight loss. It's not like a one and done. It's not like, you know, your child was born blind. And you have to accept it. It's like they're constantly losing more and more sight. And so the majority of families that reached out to me are parents in situations like ours with progressive sight loss.

And one family in particular, I met with the parents were both professors. And so they understood the value of education, but they could not understand the value of Braille or have a white cane in their mind. Their son had to overcome his blindness. He didn't need to be accommodated for it, which just didn't make sense to me. But in our conversation, I realized that they were having him practice cursive every night for like an hour. And they were like, putting all these requirements on him that their sighted son had as well. And not making accommodations for their son. So when Kai was with us, and Kai pulled out his assistive technology, he walked in with his white cane. And by the end of that meeting, the parents were like, we get it, we understand, like, you know, he can, he'll still be able to do everything. He just needs these tools, you know. And so it really just, it seems like every aspect of our child's learning. It comes down to our acceptance of what's happening right now.

Another mom was like, I will never let my child use a white cane because I feel like he'll be bullied. But then, you know, after meeting Kai and understanding, you know, he could be holding on to my arm and fumbling around. Or he could be walking with his white cane independently. And it's like, once she saw that, it's like this acceptance came over her and her son started using a cane. I just time and time again, that just comes back to acceptance.

Kassy:
I think you hit a few things on the head, that I kind of wanted to touch on. The first being, we can have this pie in the sky of acceptance, right, we know what we need to do. And if you're a parent, there's probably less of a possibility that you have to study grief cycles, you know, in order to become a parent. And there's probably even less of a possibility that the doctor walked you through that. I met somebody who's a grown adult, and then she had lasik eye surgery, and lost her vision because of it. And she was still going to an optometrist. And she had this huge team who had done this lasik surgery on her, and they sent her to an optometrist.

When I met her, I was on vacation with my family. I went to 5k walk with my mom's job, right. And of course, out of hundreds of people that my mom works with, I end up talking to the person with a visual impairment. And I told her what I do. She had no idea that orientation mobility existed. And I think it's really interesting, because unless you have this understanding that O and M exists, you have to weed through a lot of stuff.

As a parent going through these, how did you find acceptance? Were there like... Did you journal? Did you lean on your spirituality? What in those hard moments and those hard days? What did you lean on?

Kim:
Oh it was such a process in the beginning. In the beginning, I cried a lot, you know, I didn't understand even what we were dealing with, or what Kai's future looks like. And that sort of, you know, plays into the next bucket, which is community and like acceptance and community go hand in hand. And so, you know, meeting people who are blind and visually impaired was very important for me on the, you know, road to acceptance.

Also, I would say, I did lean on my spiritual practices, I meditate. And so I continue to meditate. And I really realized that so many of the thoughts in my head about blindness, were limiting, you know, like, I would sit there and it would be just, I became aware of these thoughts in my head, like, he's going to be lonely, he's going to be unemployed, he, you know, he's not going to be able to get a good education, he's not gonna be able to travel independently, like, I had all of these fears. And I was spending so much energy pushing those away.

So what I decided to do was just allow them to sort of wash over me, and then to like, really look at them and be like, wait a minute, these are… these are fears, but they're not the reality. Like, the reality is, I have met some amazing blind people now who have completely, you know, like, I don't want to say normal, but like typical lives, they have jobs, they have wives, they travel. And I wanted all of that for Kai, but I just didn't know how to get there.

Kassy:
Yeah, and there's no… there's no like exact rulebook or way to get there, especially in the beginning when you're trying to navigate it all and figure it all out and maintain your composure as a parent, I can't imagine…

Kim:
Hard.. so hard, and then, you know, going to meetings at the school where they kept just saying, We've never done this before. And it's like, Well, neither have I, you know, and I'm not the expert here. But I would say that over the years, I've become an expert, I'm also a braille transcriber now.

You know, I feel like parental acceptance of the here and now this very moment, the next best step that they can take, that I can take as a parent is really the first step forward and then comes building community. And you know, getting the tools and the skills and the resources. 

But yeah, acceptance is a tough one. And like I said, it comes round and round with progressive sight loss.

C in ACT, Community

Kassy:
Yeah. And when you say like acceptance and then community and then it was, it also sounds like in your story, having some community helped with your acceptance too?

Kim:
Yes, it's definitely this process that like feeds into itself because the more community I had, the more acceptance I had. The more acceptance I had, the more I fought for the tools that kind of needed. And it's like, those three pillars really are not in a row. They're sort of, you know, it's like a process, they all work together.

Kassy:
Yeah. And I'm sure for every single person, the process is going to look different depending on what your situation is. And in you guys's situation, there's nobody to blame. But in situations where there is a person to blame, there's probably a whole other, you know, set of things or, you know, as parents, we have so much guilt, right.

But I've had students who became visually impaired by being struck by lightning, on vacation, or a gunshot wound or an accident at home, or shaken baby from whoever. And as a parent, there's also got to be this layer, I can imagine, of, we should have not gone on that vacation, I shouldn't have let her out that night, I shouldn't have let this person watch my child. And you can't know those things… like looking back, you know, but I can imagine how it all goes into that acceptance piece and why that's so big.

Kim:
Yes. And I do see a therapist as well, I highly recommend therapy for parents of blind kids or disabled kids in general, really, for everyone. I think we all need therapy. But therapy has really helped me to explore, you know, my fears and versus the reality and, you know, gives me a safe space to like, vent my feelings. And it's been really helpful.

Kassy:
Yes, I am a huge proponent of therapy. I literally just got out of therapy earlier today. I was out of it for three weeks. And I was like, why is it so hard? Life is so hard.

Kim:
Life is hard. Life is hard without having a blind or disabled child. You know, it's like that just adds such a layer of complications that I personally was not prepared for. And I mean, I… I think, really, you know, disabilities, that one group that we can all fall into it any moment. And I personally am disabled and I had to deal with my own grief around my chronic illness. And then you layer Kai's sight loss on top of that, and it was really heavy, it was a lot to carry.

Kassy:
Yeah. One thing that you mentioned was you notice that your thoughts about blindness are role limiting and, and then acceptance, you know, also means clearly seeing that your child can succeed. Yes. And then doing the work to get them what they need to succeed. Can you walk us through a little bit about that, like, as a parent becoming an advocate for your child? What did that look like for you?

Kim:
Yeah, for me, I would say, you know, that falls into that community bucket. For me and living in this rural area and not having any experience with blindness. I became like dog-eared about finding people who are blind, like I would just track them down anywhere they were.

But ultimately, I would say our TVI was the one who made the like strongest best connection for us. And I would recommend for all parents to reach out to their TVI and oh nm and say, Here's my phone number. If you know somebody that would be willing to talk to me, have them call me.

Our TVI connected us to this with a blind man she went to college with and he has been the best mentor for my son. And honestly, he's been a great mentor for all of us. He's wildly successful, like more successful than most people I know. And, you know, he's married, he's happy. He travels internationally. And just having him on our side just made such a difference. 

And then, you know, we just continued to just build that community. And that was ideal, and not only with people who are blind, but also like Kai was an athlete. And he, since he was three. He has skimboard. He surfed. He loves to skateboard. And he did not want to give that up. And we didn't want him to give that up. But you know, there was so much… We had so much fear around, how can we do this?

And so another part of community is building, you know, bridges with organizations even if they typically serve the sighted community, just having a good conversation with them. A lot of times will open them up to you know, training and working with your child who's blind.

So for example, Kai wanted to continue to skimboard and we didn't know how that would go and there was a skimboarding camp nearby. So I contacted the person who was running it, explained what was happening. And he was like, bring him! I can't wait to meet him.

And he worked with Kai on, you know, developing this whole new way to skimboard. It was something that this expert had used. But it wasn't something he trained to beginners. But he trained Kai, on how to do this specific way of getting on his board. And that took Kai into getting a sponsorship. He's the only blind skimboarder who’s sponsored that I'm aware of. He's got a sponsorship, he gets free boards out of exile skimboards in California.

And so, you know, people want to help, they just don't know how to help. And a lot of times, it's just, you know, being upfront and having a conversation about what your fears are. And you can come together for a solution.

Kassy:
Absolutely. Before we get well, yeah, we can go into a little bit more about the community. Was it difficult to build community when living in rural Georgia? I know you spoke about the mentor, and you and I both have a fondness for that person.

Kim:
Yes.

Kassy:
He's actually the reason I got into O and M really? I haven’t told you the story?

Kim:
No.

Kassy:
Oh, my gosh, okay. So should we… I don't know, we'll tell it right now.

Kim:
We’ll connect about it, you’ll have to tell me.

Kassy:
So for those of you guys who are in our Allied community, I'll probably… I'll just share it on Instagram stories at some point. It involves Panama City, and this guy's cane and a club. And that's when I signed up for cane classes.

Kim:
That’s incredible. I mean, I can share his name, my son's mentor is Joe and Joe is completely open to sharing his name and being of service to others. He's a wonderful person.

Kassy:
He is. I remember being in college, and he was just so comfortable and confident, even in his visual impairment. And he would go speak at conferences already. And I would be like, just in awe that he knew who he was so much. So we have Joe, right. But you're also living in a rural county in Georgia, tell me what that was like. And especially, you know, in the initial parts of your journey.

Kim:
It was really hard. Like at first, the first person that we could find was an elderly man who had lost his sight to RP. And he was wonderful. But like, he did not have the skills that I wanted for Kai, you know, he had basic skills, but he hadn't learned braille and any of that, because he lost his sight so late in life.

And you know, Kai… I was so concerned about Kai’s education because he was a strong student. So I really looked for, you know, connections with other parents who have… who had strong students, I use Facebook, I use Instagram. Facebook groups are great if you know who's in the group. But be careful, I, you know, there's a lot of parent groups that have parents plus a lot of other people. And those groups don't feel as safe to me as a group, that’s, you know, parents, and teachers of the visually impaired and O and Ms, and blind adults. But you know, when you just get random people on there.

Like one time, I did this long post with very specific information, and Kai's eye doctor sent me a direct message after reading it. And that felt so unsafe to me, like, it wasn't stuff I would have wanted to share with him. So I caution people to you know, know who's in the groups. But support groups are really good. You know, we didn't have any local chapters here like, the main foundations. So I would zoom conference into things or call into meetings.

It was really hard. I mean, I've only met one other mom here locally, on my own, but our O and M person was incredible. She would have meetups in the park like adventure meetups for her students who could come on the weekend. And then they would get to know each other and the parents would drop off and we would get to know each other. And oftentimes, we would go have coffee together.

So that was huge, because she was serving our region. And so she got a lot of kids and parents there. So that became a really big support system for me.

Kassy:
I love that idea. Wait, we're gonna pause. This is a conference for orientation and mobility specialists. I just found this strategy that I don't think I would have thought about just having adventures in a park. Yes, specifically so that also parents can get together and meet each other. And the students, we all know that the students getting together is a really good idea. I work for a bunch of contract. I contract with a bunch of different schools so in my head, they're all different. And they're different places. I don't work for like one county. What a genius, genius, beautiful idea. And it's not a new idea. I just wanted to pull that out. 

Kim:
Yeah, it works so perfectly. And I do think that comes down… You know, it probably helped that I gave her my number and said, I want to meet other parents, you know, and I'm sure other parents were doing that as well. And she just had this brilliant way of bringing us all together. And, you know, sometimes the parents would stay and talk, sometimes they would leave, but we all got to know each other. And our kids got to know each other, which is so great.

You know, being in a rural area, we would meet in Savannah, Georgia, which, you know, Kai did a lot of his training in Savannah, which was great. It's so important that our kids learn to, you know, navigate their area, but also to navigate like busy city streets and, you know, navigate in areas that they're just not familiar with at all. And so she was… She was just really brilliant and bringing the kids together, making everything fun, and letting us all get to know each other.

Kassy:
Yeah, I love that. Okay, so what about when the TVI and O and M are not involved? What did you do to build community outside of education system?

Kim:
Yeah, that was more challenging here, for sure. I would say dialing in to some of the foundation calls like especially like the national organization, Parents of Blind Kids. You know, and family connect was another way, another website, where I would join some of their calls and meet other people. So in the early days, I would say I did a lot of calling in because there were no local meetings.

One time I did drive to a Georgia NFB conference. And I did meet some people that I'm still connected with today from doing that. It is harder though, when you live in a rural area, you know, to take the time to go to these, you know, drive three hours to attend a meeting. That's pretty tough. There was some meetings in Savannah, but they were all elderly people. Like it's really hard to find groups for Parents of Blind kids.

So yeah, thankfully, now I feel like since COVID, there's a lot more, you know, zoom options, and dial in options. I feel like that has helped a lot with building community. And then also once I started my blog and my social media, that just really expanded my community just exponentially.

T in ACT, Tools

Kassy:
Absolutely. I could totally see how that would. Okay, so let's move on to the T in ACT. The tools. Can you tell us a little bit about the tools that Kai has used?

Kim:
Yeah so he learned braille, and he uses a focus 40 this refreshable Braille display paired with his PC. He uses JAWS with that. And then, you know, he's a music student and he has to take a Spanish college class right now. So he's using a Braille note for that. And for his music courses, he's specifically studying music theory. So he needs to be able to access music like sheet music. And so for that he's using the dancing dots suite, and he's using a Canute, which is a nine line Braille display.

And so that's working for him and the college has been incredible at accommodating him. But in school, he started off using a folding cane, and he would wear that in a leather, you know, little pouch that you wore on his belt. And then he eventually graduated to a long white cane. And now he uses a guide dog, which he loves. 

Kassy:
That is beautiful. So since we're O and Ms, can you tell us a little bit more about Kai's introduction to the white cane?

Kim:
Yeah, that's tough. It was his summer between fourth and fifth grade. And so he took summer school with his O and M professor and so instructor. So, you know, they did a lot of learning right around the school campus and in the school. And then once school started, he was meeting with her I believe, once a week in the beginning, and then it went to once a month, but he was still using the folding cane.

And sort of our family's sort of mindset on that was like, he's the expert, like, we want him to learn the skills, but we want to give him like the agency to make his own decisions about when to use it. So from the beginning, we were like you, you have to learn, you have to go to class, you have to do that. And you have to carry your cane with you everywhere you go in case you get into a situation where you might need it, but you don't have to use it if you don't want. Keep it in the pouch, keep it in your backpack. And so I feel like that decision worked really well for us because he learned, but he also knew that he could decide what was best for him. So yeah, that's kind of how it started.

I'm trying to think if there's…, I think, I think that's the majority of that. And then, you know, when he went to high school, he decided that was the prime time to start using his cane every day. And he came to that decision, because in middle school, he kept running into people. And he kept telling us people just appear, they just appear out of nowhere. And we kept saying hi, like, they were probably there. But you know, you probably just didn't see him coming. And they expected you to stop. And you know, you didn't see him. And so I guess, you know, he started thinking about that. And he decided it would be best to start school on day one with his cane. So he started high school with a long white cane and never looked back.

Kassy:
That is amazing. So what do you think gave him the confidence to make that decision?

Kim:
I think it's a combination of factors. I think the fact that he had really good training, I mean, we were really blessed just to have a really good TVI and a really good O and M person, but they were not employed by the school, I will say. We fought to have contractors. So we contracted with a company for his service.

He had really good training. He had Joe, who he knew was a really cool guy who used his cane and traveled everywhere. And so, you know, he knew it was possible. And then I think just being empowered to make the choice, you know, not having us breathing down his neck saying you need your cane, you need your cane, because you know, kids, you know, they resist, but that type of thing.

So just knowing like, oh, you know, every now and then they'd be like, maybe that would have been easier if you had your cane. But I think just the fact they had skills, he had a mentor. And he got to make the choice. I think that was… that's what helped us.

Kassy:
I think, as young people, they need to have their, like their agency of their own body. Yeah. And I have also found the exact same thing works the best, as long as you keep it with you. Just think about the times that you're going to use it. And then when you want to use it, it'll be there, you just have to have the habit of having it with you. Because when you don't, then things don't work out so well.

So if you guys might be able to hear my dog, he has decided to start eating. So if you hear that noise, that is exactly what's going on. So let's jump to from 9th grade year to 10th grade year when the rest of his friends were learning how to drive. How did you guys mark that milestone for him? How was that experience for you guys?

Kim:
You know, I would say this is one of the frequently asked questions I get from parents. Because as a parent, you know, we always think about our kids getting that freedom. And all of a sudden you start worrying, like, my son won't be able to drive, how's he going to get around? Is he going to be sad? Is this going to be hard, and you know. It really was… it was all of those things, you know, his friends were all getting their licenses. And he felt left out of that.

So when he did turn 16, we tried to approach it from like, you don't get to drive. But you know what, you get a lot more freedom right now. And so we said, you know, you could travel independently now that you're 16 you can ride in cars with your friends, your curfew is later. Your curfew is flexible, because we understand you're dependent on your friends. So as long as you keep in touch, we're flexible.

But on the day of his birthday, we took him to get his state ID so like all of his friends are getting their driver's license, and they would stand in front of the driver's license services sign with their picture smiling with their new ID. So we did the same thing for Kai. We had him stand in front of the sign or those white cane and his state ID. And he posted those pictures, which I thought was great. And then we took him to a skimboarding competition. So he got to compete, which was fun. And then he got to take an independent trip without parents. It was wonderful.

Joe had put us in contact with the Eric’s organization. And Eric was hosting a summit that year in New York. And so Kai applied and he won a scholarship, a full scholarship to attend and he got to bring somebody. And you know, in the pasture would have been me like I would have been like I need to be there. But this time we were like you've got the skills we trust you. You can choose who you want to have go with you. And he chose his big brother.

So Cash and Kai went to New York together and participated. It was like this huge scavenger hunt throughout the city with all of these fun destinations. And they have the time to their lives. They have a blast. And, you know, I think that that just encouraged Kai to know, you know, I can't drive but I can Uber now, you know, well, actually, I guess he couldn't Uber technically till he was 18. But, you know, he had freedom to ride with other people and travel with other people besides mom and dad. 

Kai’s College Experience

Kassy:
Oh my gosh, I love that. Keeping that in mind. Keeping it in mind. So beautiful. Well, Kai is in college now. Can you tell us a little bit about his college experience?

Kim:
Yeah, so the month before college started, he was scheduled to get his guide dog. And then he decided to go the two weeks before that to a big blind skateboarding gathering in Detroit. He and his brother went alone. And they were there with Anthony Ferraro and Justin Bishop and Dan Mincy, and a bunch of the big blind’s, you know, skateboarders.

And Kai went, he's been skating forever. Never an injury. Got there, day one, spiral break to his leg. It was bad. And it messed up everything for him. So he couldn't get his guide dog. He had to pass that up. And he went to college, in a boot cast, a crutch and a white cane. It was heartbreaking.

And I wanted him to put college off for a semester. I thought, This isn't gonna work. But he made it work. And he like day one, he called me he's like, Yeah, you can’t believe happened. I was walking down the stairs. And I had my crutch in my boot, and my cane in my backpack. And all of a sudden, I lost my balance, and I started falling backwards because he had all this heavy backpack with all of the assistive tech. And he said, I started falling backwards. And this girl like, threw her arm up and hoisted me up. And then they went and had lunch together.

Kassy:
Oh my God.

Kim:
So he was fine. He got her and he figured it out. And you know, so then he finished his first year of college. He did great. He loves it. He's in Athens, Georgia at the University of Georgia. And he just went back for a soft release halfway through his sophomore year. But the summer between the two, he did get a guide dog. So he has a guide dog named Pride. She's a German shepherd. And she's wonderful.

But it has been a ton of work. Like it's all his work. I'm not doing it. He lives three hours away from me. So he's living independently. He has two roommates, he has his guide dog. And, you know, he’s really… He's doing great. He's loving college.

Kassy:
Oh it really draws up to a fantastic success story.

Kim:
Yeah, I will say since he got a guide dog something for O and Ms to consider. He has so much trouble getting a ride now with Uber Lyft. He gets denied service all the time. It is a huge battle. And from what we've understood about… Well, guide dog users are saying about 50% of the time, they're denied service by a rideshare.

So that… that puts a little bit of a crimp in his ability to get around. And he's been, you know, working on advocating about that. But he doesn't regret having a guide dog. He loves her.

A challenge in getting car rides

Kassy:
How would you go about advocating for that?

Kim:
We’re filing a complaint with the DOJ. And he has been in touch with Uber's customer service. Apparently, I don't know all the details. But the NFB had a class action suit against them that they won. But for whatever reason, like services still really limited. So more needs to be done. We've been in touch with NFB legal too. So I know there's some things in the works trying to address it and cause trying to lift his voice up about that.

Kassy:
It's got to be so great having you as a mom to lean on to advocate to help support him because you're not that type of woman doesn't seem that you're like hey, keep it hush, you have to be a people pleaser. Like, oh, this is real like we… There was a class action lawsuit and we've been in touch with the DOJ like, let's make sure that we can have my son who needs to use these services like actually be able to use the services that everybody else can use.

Kim:
Yeah, and our social media platform works well for that too, because we, you know, raise that up on our platform, we tagged Uber, we got some response from them. And then a lot of our network started telling their stories. So it, you know, it really put a spotlight on it. And we hope… we hope to do, you know, more focus on that this year.

A message from Kim, as a parent

Kassy:
Yeah. I think that'll be great. As a parent, what do you think you can tell us? Like, how can we be better for you guys?

Kim:
Well, I will say our school district did a terrible job, like we had to fight every step of the way. But ultimately, we got really good services through, you know, a contract service. So I would say, as providers of the services to encourage parents to get support, encourage them to, you know, maybe have a list of therapists handy, that are, you know, in the area, maybe provide information about support groups and meetups, like, I had to really search for that information.

And, and I'm thinking, you know, like, if in the beginning, we had had the same O and M, she probably would have had that information for us. But in the beginning, I was really seeking that. And to do things like our orientation mobility specialists did, like connect the families, I know that there's a lot of, you know, issues with sharing names and contact information. But if the parent requests it, it's, you know, you're able to do it.

So I would say, you know, encourage and help them to get support, take time to really understand the student's interests. Like, I always tell parents, like if they see a spark of interest in their student, like in their child, for some hobby or something, like seize the moment, like, find ways to make it accessible. And so I would say the same thing to providers, you know, to really understand what makes a student tick, what interests them what hobbies they have, and, you know, try to like, really capitalize on that, I would say. 

An example is, you know, the mentor that our TVI set us up with, he ultimately had my boys fly out to Canada to meet him on set. And so they were able to see him working and, like those experiences are invaluable. And so like, the more you can connect your students to others in the community note, the better and specifically when it's around their hobbies and their interests. And then also, like, keep your expectations high, you know, each student has, you know, unlimited potential. And so it's like, keep your expectations high. And also acknowledge your own limitations.

You know, like, when the school's TVI could not keep up with Kai. It was this whole battle to bring in the more skilled and qualified TVI. And the actual TVI herself wasn't the one fighting me, it was the school district. And so I think the more that providers can tag others in and be like, Look, you know.

Like our TVI, her name's Sarah, she was awesome. But she got to a point where Kai's AT skills were above what she typically taught. And so she tagged in some, you know, people who worked for Freedom Scientific and she connected us with some tutors who were able to work with him on Braille music. Like she always acknowledged her own limitations, and tagged in people who could help and I think that comes back to community. You know, we all just need to keep building our community and resources.

Kassy:
Absolutely. I guess what I'd like to do as we wrap up, is ask you if you have any last comments for us, and then you did share a few visuals and I really like I think it all ties it together. So we'll do the last comments and then I'll share the visuals especially your ACT acronym for us visual learners. And then we can wrap up for good. Sounds good?

Kim:
Okay, that sounds good. I guess I would want to wrap up with a final story. And this was with our O and M professor. She was just awesome. Her name is AJ. She would meet Kai downtown in our little town square. And they would walk together with his white cane. You know, people would be driving by and they'd see them and I'd always hear about it afterwards. Well, sometimes I would just hang out like at a local coffee shop and they would make their route to come meet me.

And this one particular day, I had dropped him with AJ and then I went to their final destination and I was ordering like coffee and I was ordering some treats for her and Kai at the end. And I wasn't quite expecting them yet. Like I was thinking they were going to be gone longer. And I turned and I saw them. But really, like my old programming went back in and I… and I was like, Oh my gosh, my son was blind like it, like hit me fresh in that moment.

And I remember thinking, oh my gosh, like he was only I think 12 At this time, and I just got just like, hit with this wave of grief. And then it's like, I remembered, like, all my practices and my acceptance in that moment. And I like looked at him fresh, realizing, you know, realizing that I had just fallen back into this grief mode. And so I looked at them fresh, and I saw Kai smile, like he was crossing the road with his cane, and he was so proud of himself. And all of a sudden, I was like, I need to let this grief go. Like, this is not even real. Like the things that I'm sad about are not actually even happening right now. Like, he is independent. He's walking with his cane, he's learning. He's happy, he's successful.

And so I feel like that story kind of shows how, like the acceptance aspect, how it's like, ongoing, but also the community aspect that AJ helped us build. And, you know, the tools for success just seeing him so independent. I mean, it was just like a real turning point for me to be like, Oh, wow. Like, I'm still battling these feelings. But now I can take a step back and actually see clearly what's happening.

Kassy:
And that just helped me so much. Oh, my gosh, what a beautiful story. I'm gonna share this image of you and your beautiful family.

Kim:
Thank you. That's my oldest son Cash. He's a geologist in Texas and his girlfriend's Sydney. And then I'm in the middle with Kai next to me, and then my husband, Chris. And then the guide dog, Pride, is down at our feet.

Kassy:
Oh, so beautiful. I'm going to scroll down to the next one, which is Kai's valedictorian speech. So this is available for you guys both on Kim's Navigating Blindness, Instagram, and you can just click there. And it's an image of Kai with some text. And then I really wanted to share this. I really liked how you have it listed out the top three tips for parenting a blind child, and your Instagram, @navigatingblindness, Facebook, @navigatingblindness. And you do have a book coming out.

Kim:
I do. I've been working on it all day. I'm working with an editor now. I wrote it last over the last year and a half. It's written. It is being edited. And I hope to publish it by the end of the year. That's my goal right now. But it really is a memoir about our story, and sort of laying out this framework for other parents.

Kassy:
So I encourage all of you guys to go follow Kim at @navigatingblindness, Instagram or Facebook, check out our blog, and make sure that you stay on top of when this book is coming out because I'm really excited for it. I think it's going to be a game changer for our community and for the people who really need it and need to lean on somebody who's been there. Thank you so much for coming in having this amazing conversation partner. Oh, it's just been beautiful.

Kim:
Thank you. I have loved chatting with you. And I want to hear the Joe's story later. 

Kassy:
I told you just the gist of it.

Kim:
I need details. All right. Well, it was so nice to do this. Thank you again.