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EyeInspire Book Release

“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.

Available in print, kindle and audio.

Emerging Proud Through Eye Sight Loss https://smile.amazon.com/dp/191608608X/ref=cm_sw_r_cp_api_i_ZRzGFbZERQKPF

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!

Facebook link: www.facebook.com/eyeinspire2020/posts/2359661507491986

YouTube link: https://www.youtube.com/watch?v=guWsedrjWIU

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.

It Takes a Village: Even in a Pandemic.

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!

Guest Post by Sarah Immerfall

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.”

Diagnosis of Autoimmune Retinopathy: Becky’s Story

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 My Blindness by Kerry Kijewski

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”

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Feel the Facts by Kai Owens (17)

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. 

Continue reading “Feel the Facts by Kai Owens (17)”

Aille Design: Clothing that Speaks

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”

AIR? …We need your help & connections.

Friends, we need your help.

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. 😭 😡 😭

After 3 negative genetic tests, today Kai was officially diagnosed with AIR. 3 different retinal autoantibodies (AAb’s) were found and he’s being tested for a 4th.
Doc recommends one of 2 treatment paths:
Continue reading “AIR? …We need your help & connections.”

The Courage to Share: Blogs by Moms of Blind/VI kids

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!

Each of these blogs is written by a sighted mom of a blind or VI child(ren). Our kids range in age from 1-20, they have different diagnoses, and our philosophies, cultures, and religious backgrounds vary, but what we all have in common is the courage to share. Continue reading “The Courage to Share: Blogs by Moms of Blind/VI kids”

A Step Forward & Other Hijinks!

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.

Continue reading “A Step Forward & Other Hijinks!”

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Legally Blind Teen Shares Comfort Items while Encouraging Peers to Step Outside Their Comfort Zones.

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.”

Kai is 17 now, and he’s just completed his 4th delivery. This year, in addition to delivering comfort, he had a message to share: Comfort is important, but he now believes it’s even more important to push himself outside of his comfort zone. Continue reading “Legally Blind Teen Shares Comfort Items while Encouraging Peers to Step Outside Their Comfort Zones.”