Hi! If you feel alone raising a child who is blind or has low vision, I hope this collaboration with our friend Chris Webb of Our Blind World will help!
Last week on Instagram we asked the following question: What is the hardest challenge you’ve faced as the parent of a blind or visually impaired child?
The responses were plentiful + eerily similar + fell into three categories: Acceptance, Community & Accessible Education.
Below are the responses from our followers* + some resources that may help.
Hi everyone, Hope you are well. Blog updates are few and far between these days as Kai is living his best life as a junior in college! His major is music theory and his minor is jazz drumset. The college is still fulfilling all of his accommodations and he’s really happy at UGA.
Kai and his guide dog Pride have hit their stride together as a working team and Kai loves the companionship. He says that other students saw his cane as a barrier to conversation but Pride is a conversation magnet and his social life is going strong. He has recently taken over as leader of a jazz consortium in Athens, Georgia called Swing Theory. A group of local jazz performers who get together to jam and gig at local venues. You can read more about it by clicking here.
Kai and Pride live with two roommates just off campus. They can easily walk to campus and then use the university’s transit system to get to class. If the weather is terrible or he needs to be someplace early, the university sends a paratransit van to assist. He’s still encountering some unfortunate discriminatory issues with rideshare (you can read more about that here) but otherwise no complaints.
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!
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.”
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.
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
“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.
Picture of book jacket: Titled Emerging Proud EYE INSPIRE with the pictures of 17 story contributors.
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!
Hi! My name is Sarah and my son, Siah, was born completely blind. He has a condition called Oculoauriculovertebral Syndrome that caused microphthalmia and he wears bilateral scleral shells. He just turned 4 and is finally past a lot of medical treatment for issues unrelated to his vision, and we are so excited to focus solely on his progress! Continue reading “It Takes a Village: Even in a Pandemic.”→
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”→
Navigating Blindness 