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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

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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!

Becoming a Certified Braille Transcriber by Elizabeth Symington, Founder UEB Study Group

July is braille literacy month on Navigating Blindness and we are honored to feature a blog post by Elizabeth Symington, CBT. She is a fearless leader in the Braille Community and a dear friend.

My Story of Becoming a Certified Braille Transcriber
By Elizabeth Symington

I was introduced to braille while attending art school in San Francisco, CA. One day while at the library, I discovered a picture book for children who are blind. At this point, I’d never met a blind person, nor did I even know there were picture books for the blind. I was instantly captivated.

The braille picture book is one of my childhood favorites, “A Color of His Own,” by Leo Lionni. The pictures looked like a wall fresco; they rose off the page. Instead of using color, different textures were utilized to describe the pictures. It was also a fun decoding game since the story was in braille and in print. Continue reading “Becoming a Certified Braille Transcriber by Elizabeth Symington, Founder UEB Study Group”

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”

Thriving Blind & Navigating Blindness: Acceptance & So Much More

From perceptions to prom to college — and everything in between — Kristin & Kim cover multiple topics about raising kids who are blind. Click here or on the image below to listen in on the chat/rant that follows no outline or schedule!

Please give us a like, share, follow or comment. Related links are included at the end of the post.

ps. This is my first video experience so please be kind. Yes, I know I blinked A LOT! lol. — Kim

Image is a link to the video along with headshots of Kristin & Kim.

Continue reading “Thriving Blind & Navigating Blindness: Acceptance & So Much More”

The Process of Letting Go

After several months wholly focused on resolving the instructional materials issues at my son’s high school, it was time to turn our attention towards the future. We opened a  Vocational Rehabilitation case for my son and met with the local university’s disability services director regarding dual enrollment. Both meetings were emotionally draining as I realized that the process of advocating for my son’s needs in the educational and career environments will always be a challenge.

Now that my 16-year-old son is fully transitioned to Braille, Nemeth, cane usage and assistive technology he understands what he needs in order to be successful. He also understands that he is the best person to quickly identify challenges and attempt to solve issues through clear communication. I’m so proud of the growth he’s experienced over the last 6 years of vision loss. I’m learning to step back and let him lead. As a mom who has fought daily for his needs over the last six years this “letting go” is very emotional.  Continue reading “The Process of Letting Go”

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A New Way to See

The following post was originally written by Kim Owens for FamilyConnect Newsletter:

At the age of 10, my son, Kai, began to lose his vision to an aggressive form of Retinitis Pigmentosa (RP). My dreams for his life were shattered with the doctor’s words, “blindness, no known cure…” I was blind-sided by his diagnosis and could see only darkness. Continue reading “A New Way to See”