Hi everyone! It has been a while since we posted an update. This is Kim/mom and I hope you are well. Kai graduated high school back in May and moved to a huge college campus in August – 4 hours away with 40k students! He’s 6 weeks into his new college career and is thriving. He rates his college experience as a 9 or 10 out of 10. We are so thrilled for him!
He graduated his mainstream high school as Valedictorian. You can watch his valedictory speech by clicking here. The support we received along the journey was simply amazing. We have met the most incredible people in the blind/low vision community. We have worked with amazing mentors and educators and we have grown so much. Most importantly, Kai has developed the confidence and skills to advocate for himself in a university setting. He’s working closely with his vocational rehabilitation counselor, his professors and the University’s Disability Resources Center to get access to the education he desires. He’s traveling all over the campus and town independently with his excellent orientation and mobility skills.
And, don’t forget about our t-shirt shop: www.EyeSwearApparel.com Blindness Advocacy with a twist. Great gift ideas for you and your blind/vi friends and all proceeds go toward Kai’s educational expenses.
We look forward to getting to know you and continuing to navigate blindness together. — The Owens Family
Today I mailed off my final project in hopes of earning my national braille transcriber certification from the Library of Congress! It’s a 35 page manuscript and I must pass with an 80+.
In November 2018 we went through a formal complaint and mediation process with our school district because Kai was not receiving timely, accurate braille materials for his math and science classes. We “won” at mediation and things got much better, but while fighting for braille I felt so helpless. My son was completely at their mercy. It was then, that I decided I wanted to learn to create braille materials, and I set the goal to get certified by the time he graduates high school.
Y’all, when I registered for training to become a braille transcriber in Feb 2019, I didn’t even know the braille alphabet! I honestly cannot believe I’ve made it to this point.
Parents of kids who are blind or low vision often ask if they “should” learn Braille. Here are my thoughts on that, and my answer may surprise you!
We’d like to thank the fabulous team over at Bold Blind Beauty for choosing Kai to be featured in Beyond Sight Magazine’s Men In Motion. Below is a bit about their online magazine and a link to Kai’s feature article and video.
From Beyond Sight: In 2021 we will be introducing you to incredible young people like Kai Owens who are doing extraordinary things. These young people are extraordinary because in spite of the barriers they encounter daily they persist. Many have learned from an early age to self-advocate and the strength, resilience, and tenacity they possess will change perceptions.
“Are you a visually impaired person who just does not feel that there are any opportunities open to you? Are you a parent of a visually impaired young person, and at a loss for how to encourage your child to believe in themselves? Are you a charity that works with visually impaired young people and believes that hearing experiences of others will help inspire your youth group, or individuals and families you work with? …”
Here is the link to the book “Emerging Proud Through Eye Sight Loss” that launched on World Sight Day! Kai is one of the story contributors.
About the launch video: Reposted from EyeInspire2020
Join us to celebrate the Eye Inspire book release on WORLD SIGHT DAY 2020 at 1pm ET (6pm BT). Featuring some of the amazing visually impaired story contributors, talking about their experiences with sight loss and amazing achievements, plus their involvement in the Eye Inspire project as a whole. Also news on how the book will benefit young people with sight loss and how the project will develop further. Expect oodles of inspiration and VIPs!
Kai speaks at 22:30 but the event is filled with awesome guests!
Our special guests span the globe, from USA to Australia! Spread the word and join us for a super inspiring live stream event full of great interviews with amazing VIPs. Featuring Kai Owens, Jonathan Goerlach, Nicole Kada, James Laird, Nigel Limb, Alice Cadman, Bari Azman and Daniel Williams, plus hosted by our founder DJ MissChivers. Nothing is impossible.
To wrap up our month of braille literacy guest blogs, I’ve asked Kai to share his thoughts about braille literacy. Kai has helped several families, with children who are losing their sight, to understand how braille is helpful & relevant in 2020. Kai is now a college-bound senior in a mainstream, public high school and he is at the top of his class. Here’s what he wants you to know about braille.
Feel the Facts by Kai Owens
30% of all blind people are employed, which means 70% are not. 90% of the employed are braille readers. This means that if you do not read braille then there is only a 3% chance that you will be employed in your lifetime. THREE PERCENT!
So, for every 100 blind people who do not read braille there will be only 3 who are employed.
Below is a link to an episode of one of my favorite podcasts called A Step Forward by Kassy Maloney. In this episode, Kassy hosts a panel of 4 adults who are blind or low-vision and encourages them to share openly about their Orientation and Mobility skills and history. I could relate to so many of the stories shared and the episode sparked memories of one of Kai’s epic hijinks.
No Fear Kai
One lazy Saturday, there was a knock at my door. I opened the door to find an intimidating, bulky, 6’4″ tall police officer. I could tell by the look on his face that something was wrong. It turns out that he had just had an altercation with Kai and his friends. They were all 12-14 at the time, and up at the school playground. This is a regular occurrence in our small town — kids meet up at the school to play on the playground, ride scooters and skateboards. However, on this particular day, one of Kai’s friends pointed out that there was a built-in metal ladder to the roof which hung about 6 feet from the ground. The boys thought it would be a good idea to climb up and check out the roof (and post IG pics from the tip-top! what!?) A passer-by called the police saying that there were 3 kids on the roof and one was wearing a neon yellow jersey.
When Kai was 10 and first diagnosed with degenerative sight loss, he was scared. He began to have trouble seeing at night and his first reaction was to build a nest on his bed out of blankets and pillows. One night as mom was tucking him into his nest, he said that he felt bad for all the kids around the world who do not have comfortable places to sleep. Mom had no idea how to tackle that issue on a global scale while also helping her son deal with sight loss, but after many conversations together: Kai’s Comforts was born. Kai decided to collect new, soft, highly tactile pillows and blankets from his community to deliver to his peers who are living at schools for the blind. At first, it started out as a great way for us to do something positive, and connect Kai to peers dealing with sight loss. His first collection was delivered to kids at the Georgia Academy for the Blind. A school for children who are blind and visually impaired about 3 hours from Kai’s mainstream school. The first delivery was a huge success the kids were thrilled to receive their comfort items, and Kai got to meet lots of kids who were “like him.”
I speak a lot about acceptance and how our family has adapted to our son’s sight loss from Retinitis Pigmentosa. However, I want to be real with you, I’m struggling right now.
We just returned from a visit to Duke Eye Center. Our youngest son, Kai, has previously been followed by Emory. We’ve visited Emory Eye Clinic 3 times over the last 7 years and they’ve run a number of tests and have run genetics tests twice. At the age of 10, Kai was diagnosed with Retinitis Pigmentosa. RP is a rod-cone dystrophy that causes a restriction in the visual field (think of looking through a tunnel) and eventually, in the late stages, causes the central vision to fail. RP is typically diagnosed later in life and is a typically slow progressing disease. Continue reading “The Struggle is Real”→
I keep hearing that 2020 is the year of “#Acceptance” so today I’d like to respond to a question from a friend who asks: “You seem to have fully accepted Kai’s sight loss. How do you think you were able to do that?” Continue reading “The Mystery of Acceptance”→
Hi everyone! This post was written by our boys — Kai who is 17 and legally blind and Cash who is 21 and typically sighted — about their recent travel to Canada to visit the set of the Apple TV+ original See! That’s right, they even got to meet Jason Momoa and watch a fight scene in a cave, as it was being filmed. (Season 1, Episode 6 – which aired this past weekend.) The post is wrapped up with comments from both dad and mom. Enjoy!
From Kai’s Perspective:
My brother Cash and I’s trip to Canada taught me so much and it was a great experience. We traveled to Vancouver to meet my mentor Joe Strechay, who is the blindness consultant on a new Apple+ TV show called See. Joe is an awesome guy who has helped me learn how to thrive with a visual impairment, so I was super excited about the trip. Continue reading “See, Strechay & Momoa”→
Hi, I’m Kai Owens. I am a 16-year-old athlete, drummer, and mainstream high school student. I’m also legally blind from Retinitis Pigmentosa. I’ve done a lot of Orientation & Mobility training locally, and I’ve also traveled extensively in the US and Vancouver, BC. I use my mobility cane at all times and I’ve recently been approved for a guide dog. I’d like to share a few of my observations about when drivers and mobility canes intersect.
At some point, most sighted people have been driving and seen a blind person and panicked. Some of the encounters are full of mistakes that really do not make any sense. I’m going to walk you through a few common mistakes drivers make in hopes of raising awareness. Continue reading “When Drivers & Mobility Canes Intersect”→
I am deeply tired. We have been having a rough time lately. My autoimmune disease has been flared up causing pain, fatigue and general malaise. Kai just underwent his bi-annual appointment at the eye clinic 4 hours from home. It’s hard to endure those long drives, long waits and painful tests when the outcome is only for school documentation — no treatment. Top that off with my oldest son having to learn some hard self-care lessons while away at college and sprinkle it with my dad’s inability to admit to a severe drug and alcohol addiction and I find myself wondering: Am I willing? Continue reading “Willingness is the Key”→
Last week was the first week my legally blind son was back in school since the holidays. It was also the week that the action items in our formal mediation agreement were to be implemented by his high school.
The amount of internal stress I felt about his return to school took me by surprise. My fight-or-flight instinct kicked-in keeping my muscles tense, my breathing shallow, my mind jumpy and making sleep elusive. Continue reading “Breathe, Mama Bear, Breathe”→
In student advocacy, partnering with the IEP team is a key concept. However, some days it feels impossible to straddle the divide between my child’s accessibility needs and the school’s ability to provide timely, accessible materials. When I’m feeling overwhelmed, I ask myself:
What exactly is the issue?
What does his team believe is the best answer?
What does my child believe is necessary?
Is “good enough” okay, or will this problem seriously impact his future?
Last week was Kai’s 16th birthday. I remember when we first heard the words “your son is going blind” and the feelings of dread and loss that swept over me when I realized he would not be able to drive. It’s been 6 years since diagnosis, but right now we are feeling the diagnosis and loss acutely — like a fresh wound. Continue reading “Blindness and the Sixteenth Birthday”→
The following post was originally written by Kim Owens for FamilyConnect Newsletter:
At the age of 10, my son, Kai, began to lose his vision to an aggressive form of Retinitis Pigmentosa (RP). My dreams for his life were shattered with the doctor’s words, “blindness, no known cure…” I was blind-sided by his diagnosis and could see only darkness. Continue reading “A New Way to See”→
Hi everyone, I’m excited to introduce you to a new project by author Jon Marin. His new book, “See Us” is being released soon and it addresses a crucial factor in the lives of young people who are blind and visually impaired – finding meaningful work. Currently, in the US, 70% of blind and visually impaired people do not work. This is due to a variety of factors including prejudice, ableism, education, training and more, and Jon addresses several huge obstacles in his work as the Program Director of The Career Discovery Project. We can learn a lot from him and his clients in his new book “See Us.”
Hi everyone, we hope you are well. We’ve been a little quiet over here, dealing with Kai’s new diagnosis, treatment, college applications, music auditions and a family death. (We’re always keepin’ it real over here!) So, you probably wont hear much from us over the holidays as we attempt to regroup and recharge. However, we wanted to take a moment to wish you a healthy, peaceful holiday season and tell you about something that is making us smile right now. Y’all need to check out the Touch Pad Pro! It’s everything we’ve all dreamed of and more! Below are a few highlights and for more information you can visit the website or listen to an audio interview with founder Daniel Lubiner and Bold Blind Beauty.
I am speaking at a new event that is attracting hundreds of family, friends, and educators of the blind and visually impaired community, and shining an exciting light on those that are thriving with blindness. I am one of over 20 speakers (from 6 different countries) for The Succeed Without Sight Summit! Below is a link to get your FREE tickets! I hope you can join us on 11/12-14! – Kim