Diagnosis of Autoimmune Retinopathy: Regen’s Story

Hello! I’m Regen and I wanted to share my personal story with the rare diagnosis of autoimmune retinopathy (AIR). As a 23-year-old college graduate, the only anticipated stress I had was the start of Physician Assistant school, my next step to eventually diagnosing and treating others. Never could I have imagined the personal medical journey that I was about to embark on.

Bothersome floaters that grew exponentially within a short time frame prompted me for an annual visit to the eye doctor. While my provider reviewed that floaters can be a natural process of aging, her tone changed to concern when my visual field returned with significant blind spots. A negative MRI and uncertainty of next steps led to a referral to Wills Eye in Philadelphia. Initially, I was diagnosed with pars planitis, an inflammatory condition for which I was prescribed steroidal eye drops. Regular monitoring had revealed favorable exams – however, my symptoms were not improving but rather accelerating to include afterimages and strange flashes of color. Infuriatingly, I was told that the stress of graduate school in conjunction with baseline anxiety was the likely cause of such visual disturbances. Feeling unheard and my intuition pushing me to continue to advocate for myself, I consulted with a neuro-ophthalmologist at Wills Eye. Ultimately, he escalated my case and led me to a retinal specialist who formerly diagnosed me with AIR. While I was thrilled to have my concerns considered, this was certainly not the diagnosis I wanted to receive. A rare condition with no cure or consensus on treatment, it was quite the opposite of what I was looking for. After a consult with Dr. Foster at MERSI, a further lab workup was positive for three anti-retinal antibodies and two anti-optic nerve antibodies, further conclusive evidence in conjunction with my prior diagnostic tests and symptoms. I was in denial, but three unanimous opinions and a negative genetic workup later – indeed the culprit was found.

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What Is the Hardest Challenge You’ve Faced as The Parent of a Blind or Low Vision Child? (Plus, Resources To Help)

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.

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2023 Family Year-End Update

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.

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What to do if a rideshare service denies access to you and/or your guide dog.

Kai @kai.owens is blind and has never been able to drive, so services like Uber and Lyft have the potential to give him freedom. Their apps are accessible with his iPhone’s accessibility settings and the idea of catching a ride at will gives him a sense of freedom. Unfortunately, these services often marginalize the very communities that could most benefit from their services.

(Picture description: Kai stands with his German Shepherd guide dog named Pride)

Recently, a driver told Kai, “I think you should carry a blanket to place on the floor under your dog, so I don’t have to deal with the dog hair.” ADA law protects guide dog access. If dog hair is the concern, rideshare drivers should consider carrying a blanket or lint brush to protect the floorboards and interior from dog hair. But what’s worse is that some drivers flat-out refuse service causing frustration, tardiness, and danger.

Kai lives about three hours away from home on his college campus. He called me one day to vent, saying, “I used the Uber app to request a ride to a doctor’s appointment. The app said it would be a fifteen-minute wait, so I sat down and waited near my pickup location. When the driver arrived, they messaged me saying that they could not find me. So, I called the driver and gave them a better idea of my location.”

Then the driver asked, “Is that you in the grey shirt?”

He said, “Yes.”

Then she asked, “With the dog?”

He said, “Yes.”

The driver pulled up slowly along the sidewalk next to him, then kept rolling forward. At first, he hoped that she had just pulled up further looking for a safe place to stop, but then she hung up the call and cancelled his ride.

Uber has stranded him before, but this felt more personal because the driver acknowledged seeing him, then canceled while talking to him. It deeply affected him. He expressed anger and hurt over the overt discrimination and ableism.

He booked a new ride and the App said it would be a twenty-two-minute wait. He used that time to contact the doctor’s office to let them know that he’d be late. They told him if he was more than fifteen minutes late they’d need to reschedule his appointment and he’d receive a last-minute cancellation fee. He explained the full situation and they waived their policies and said they’d do their best to work him in upon arrival. Next, he messaged the Uber helpline through their app. Uber sent him a response that read, “What you’ve reported is extremely concerning, and we’ll do everything to help. Discrimination is never allowed on the Uber platform. We see you’ve reached out via email and in-app about this issue and a member of our team will be following up as soon as possible. We appreciate your patience.”

We posted about Kai’s Uber experience on our social media platforms. Many blind individuals and guide dog handlers responded by sharing their rideshare access and denial experiences. In Kai’s situation, Uber refunded his ride that day, but never addressed the larger issues related to access and ADA law.

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2022 Owens Family Update

Hi everyone, Hope you are well. Blog updates are few and far between these days as Kai is living his best life in college!

Kai is enjoying his sophomore year studying music theory and jazz drumset. The college is fulfilling all of his accommodations and it’s so refreshing after years of battling with our local school district.

Over the summer, Kai got matched with a guide dog, named Pride. The two of them make a great team! He’s living independently in a rental house just off campus with two roommates. Big brother Cash lived there in college, then purchased it as an investment when he started his job as a geologist in Houston, TX.

Kai and Pride walk to campus and then use the university 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 could not be happier with his college experience. He’s involved in several activities including Spike Squad, performing at the local jazz brunches and open mics, volunteering at the animal shelter, and working part-time (consulting for Vispero). His plate is full but he couldn’t be happier.

Cash and his girlfriend Sydney are enjoying their jobs in Houston and we plan to visit over the holidays. I miss them all madly!

Chris and I are adjusting to empty nesting. Cash has been gone for a while and as much as I miss him, he’s happy and busy adulting. Even after a full year of college, Kai’s absence feels fresh. After fighting so hard for his education I find myself feeling a mixture of emotions: pride that he’s a strong self-advocate + joy about his college experience + relief that I’m not having to fight anymore + loneliness in the quiet house.

While Chris is at work, teaching, I took time to write a book about our family’s experience navigating blindness. I’m currently working with an editor and exploring publishing options. If you are interested in knowing more about the book please click here and sign up to receive updates about the book writing process and launch. My goal is to publish in paperback, Kindle, audio, and braille.

Thanks for all of your support and as always, you can find the most current updates on our Instagram and our blog’s features page. You may reach us by completing the contact form.

Take good care and keep in touch, Kim

Kai kneels down beside Pride. This picture was taken as we drove away after move in.

Graduation, College & The Empty Nest.

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.

This blog allowed us to record major milestones, meet amazing people and it opened many doors to experiences and adventures. I’m so grateful for the time we’ve spent together and I will remain available to parents of blind and visually impaired kids. If you need support, please click here to access our contact form and I will respond. Kai and I will continue to participate in panels, podcasts, webcasts, etc., so if you have an opportunity for either of us, please reach out. You can find our most recent content by clicking here to access our features page.

If you’d like to reach or follow Kai directly, I’d recommend clicking here to visit his Instagram page at www.instagram.com/Kai.Owens.

We will continue to update and promote our friends in the blind/low vision community on our family’s advocacy page. Click here to go to www.instagram.com/NavigatingBlindness .

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

Blind & Adaptive Skaters Take Over a Skate Park for the Weekend – A group filled with Ambition, Perseverance, and Grit, by Kelly Anne Walborn

Check out the great article about the skaters experience at this link:

https://turmerictea.substack.com/p/blind-and-adaptive-skaters-take-over

Image of all the adaptive skaters mentioned in the article. They are standing in front of a wall that is covered in graffiti with the word Modern at the top. Many of the skaters are holding white canes. Kai is in a wheelchair and Shane has arm crutches.
Thanks for the great article, Kelly!

“Should” Parents of Blind Kids Learn Braille?

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!

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See Us: Overcoming Obstacles to Employment

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.”

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Kai is Featured in Beyond Sight Magazine’s Men in Motion

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.

Click here to watch his video on YouTube.

Click here to visit Kai’s feature page which includes a video of him telling a bit about his life.