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.
As the pandemic throws curve ball after curve ball and families and schools struggle to adapt we, at Navigating Blindness, are excited to launch our new series entitled “It Takes a Village.” Today we will hear from Sarah Immerfall as she explains what her son’s village looks like in the midst of a pandemic.
We’d love to hear from you too. If you’d like to share your story, please reach out for specifications using our contact form. Thank you!
As you may know, our son Kai was recently diagnosed with Autoimmune Retinopathy. When we received the new diagnosis we were shocked and we are still adapting to the news. Thankfully, we had already built a strong network through this blog and our social media presence. We reached out to our community and thanks to your shares, our post was viewed more than 8,000 times. Autoimmune Retinopathy (AIR) is extremely rare, but with your help, we were able to connect with 12 people who are navigating AIR and were pointed to a FB Community for Autoimmune Retinopathy with 166 members (#Rare). Becky is one of the people who immediately responded to our pleas for help with an abundance of support and information. I am honored she agreed to share her story here. Thank you Becky.
Guest post by Becky Jayakumar
Hello, I am Becky Jayakumar and I was recently diagnosed with autoimmune retinopathy (AIR). AIR is a rare autoimmune disease that destroys the retinal cells of the eye leading to progressive vision loss. There are different causes of AIR, no set diagnostic criteria, and no standard treatment which makes it a challenging disease to manage.
A year ago, I suddenly experienced visual changes and lost part of my left peripheral vision. Nothing seemed to cause it, nor did anything make it better. That evening, I was hospitalized overnight for an eye ultrasound, brain imaging, and labs and ultimately, these exams came back normal.
Over the next few months, my vision continued to worsen with progressive peripheral vision loss and increasing visual disturbances. During this time, I had more testing than you can imagine with many potential diagnoses which typically eventually got ruled out. My abnormalities included an enlarged blind spot on the left and a slightly reduced thickness of my left optic nerve. My local retinologist and neuro-ophthalmologist weren’t able to do the additional testing to look at function of the eye in NV, so I was referred to Mayo Clinic. Continue reading “Diagnosis of Autoimmune Retinopathy: Becky’s Story”→
We love featuring stories of people making a difference in the blindness community. Kerry and her brother Brian are making waves – radio waves – on their show Outlook. We hope you enjoy Kerry’s post about growing up with sight loss and finding her voice in advocacy.
Guest post by Kerry Kijewski
In disability activist Judy Heumann’s book Being Heumann: An Unrepentant Memoir of a Disability Activist, she says she believes she was meant to have a mother who would not give up on her daughter who was born with a physical disability. I don’t know about that in my case, but I do know I am lucky to have been given the advantages and foundation from my parents. I recognize my privilege, having them firmly in my corner.
This doesn’t mean I have it all figured out (no matter how much I wish I did), even as I am staring down forty in a few short years. I am further along because of the support I grew up with and still count on today. Continue reading “Navigating My Blindness by Kerry Kijewski”→
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.
July is braille literacy month on Navigating Blindness and today we are excited to feature Alexa Jovanovic, founder of Aille Design!
By Alexa Jovanovic, Founder of Aille Design
Braille is much more than a communication tool. It enables freedom of expression, provides independence and increases literacy. When combined with mainstream fashion, it symbolizes the importance of inclusive representation in the fashion industry and empowers communities to advocate for social justice. Continue reading “Aille Design: Clothing that Speaks”→
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!