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.
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.
Touch Pad Pro will allow people who are blind and low-vision to:
Experience illustrations, graphs, photographs, and selfies – Feel a face rise out of the surface with the contours of the nose, the eyes the cheeks.
Read and write anywhere with 12 lines of Braille.
Experience the Internet like never before.
View, feel and zoom in on a full-color tactile display.
Use a specialized stylus to instantly create, touch, and save tactile drawings with multi-sensory feedback.
Yesterday, we learned that Kai has been misdiagnosed for 7 years! It’s not RP or Stargardts, it’s autoimmune retinopathy (AIR). If docs had listened & run proper testing his sight may have been saved. 😭😡😭
In the early days of Kai’s diagnosis I scoured the web for blogs written by sighted parents of kids who were losing their vision. I could not find any. Sure, I could find advocacy and awareness web sites and consumer groups, but I craved emotional honesty from another mom. I wanted to read her feelings, understand her struggles, and celebrate her wins. I wanted to know her feelings about her child’s inclusion (or lack thereof) and understand the anger and frustration behind her educational accessibility battles. And, most importantly, I wanted to know what it felt like to be on the other side: to have raised a child who became a strong self-advocate, who is highly-educated and employed. I wanted to know my child could beat the grim statistics. Now, 7 years later, I have found 6 moms (+ me) who are blogging about their experiences and I am so excited to share them with you!
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”→
Seven years ago a pediatric ophthalmologist called me at work to say that our 10-year-old son’s retinas were deteriorating. I was so stricken and confused by the words he used – deterioration, progressive, no cure, no treatment – that before we hung up I asked him, “Are you telling me that he’s dying or going blind?” “Blind,” he replied.
The way the news was delivered was so shocking that the memory still brings a visceral pang of grief. With one quick phone call, our lives were changed. We learned that our precious, youngest son, Kai, would go blind. The life we had envisioned for our bright, active child would be dimmed by blindness. We were shattered. We had no template and no understanding of what it meant to live without sight. We had never even met a person who was blind.
Unfortunately, for the first several years our family had to go it alone. We live in a small rural area 3-hours from the nearest blindness advocacy group. Kai was the first child in our county to experience progressive vision loss. We had to chart our own path, figure out our options and make the necessary connections to obtain services for our son.
When Kai was 4 he had a concussion. We took him to the ER and they did a CT scan. We were told to watch him and he was sent home. He recovered right on schedule.
When Kai was 5 my dad came for a 2-week visit. Our home is small, so having one extra person makes a big difference in our routines — changes in rooms, changes in schedules. Kai began having anxiety during this visit. He had a really hard time with “things being different.” This anxious behavior continued for a while after the visit but calmed back down eventually.
When Kai was 6 he was on a basketball team. We noticed that when he played he would press and pull on his eyes. It was worse during the games, but the behavior continued. Some days Kai would actually have what appeared to be bruising at the outside edges of his eyes. And sometimes when he was really tired, I’d notice that his eyes would sort of shoot off to the side repeatedly. We took him to the doctor and were told it was probably allergies and a different manifestation of his anxiety. (We now know this behavior is called the oculo-digital sign, characterized by poking, rubbing, and/or pressing of the eyes and is very common in visually impaired children.) Continue reading “Kai’s RP Diagnosis Story”→