I speak a lot about acceptance and how our family has adapted to our son’s sight loss from Retinitis Pigmentosa. However, I want to be real with you, I’m struggling right now.
We just returned from a visit to Duke Eye Center. Our youngest son, Kai, has previously been followed by Emory. We’ve visited Emory Eye Clinic 3 times over the last 7 years and they’ve run a number of tests and have run genetics tests twice. At the age of 10, Kai was diagnosed with Retinitis Pigmentosa. RP is a rod-cone dystrophy that causes a restriction in the visual field (think of looking through a tunnel) and eventually, in the late stages, causes the central vision to fail. RP is typically diagnosed later in life and is a typically slow progressing disease. Continue reading “The Struggle is Real”
Hi friends, several years ago we started a project called Kai’s Comforts. This year marks our 4th collection and Kai was featured on the Savannah news tonight. Enjoy! And thanks for all the support.
Click below to watch on YouTube:
I’m happy to share this incredibly educational video by YouTuber “Cayla with a C” that I think parents of children who are blind and visually impaired will appreciate. Her topics of acceptance, understanding, compassion, independence, and community are spot on. Continue reading “Video Spotlight: YouTuber “Cayla with a C””
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”
I’m excited to introduce you to Lucky Touch Braille Fortune Cookie Company! The company is run by students at the California School for the Blind. The students are involved in every aspect of the company’s operations. And as far as I know, they are the only company in the world creating braille fortune cookies! WHAT A COOL IDEA!
Lucky Touch Braille Fortune Cookie Company is run by a student board of directors at the California School for the Blind. They make decisions about prices, pack cookies and sell cookies at events and by mail. They also interview candidates for open positions on the board and select new members. — Judith Lesner, Board Advisor
About 2 weeks before Valentine’s day I reached out to them to place an order for 50 braille fortune cookies. I chose “plain” and “standard uncontracted braille” but they also offer chocolate dipped, contracted braille and customized messages. The cookies arrived individually wrapped and in perfect shape — not a single broken cookie! Continue reading “Unique Braille Gift Idea”
Check it out: Navigating Blindness and Kai Owens were featured on Victoria Claire’s New Beyond Vision Website
Victoria Claire developed this site to inspire, support and advocate for the VI community and to change the public’s perception of the blind and visually impaired. Vicky is a talented speaker, sculptor, skater and surfer and, like Kai, she is legally blind from Retinitis Pigmentosa. She designs and makes amazing skateboards too!
Through acceptance, adaptivity, and accessibility there is an amazing life for every visually impaired person. – Victoria Claire
Continue reading “As Featured on Victoria Claire’s New Beyond Vision Website”