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”
While sheltering-in-place I’ve had the opportunity to read through some of my old journals written when Kai was first diagnosed and I’d love to share one with you. I’m struck by major developments in my thinking and beliefs, so I will make some comments from my 2020 self, at the end of this post that I wrote in 2014.
Originally Written by Kim Owens & Published on Caring Bridge (7.14.14)
What a week we’ve had! Our trip from rural, coastal GA to DC was AMAZING! Thanks to our Congressman John Barrow and his wonderful staff the trip was filled with surprises beyond our wildest dreams! Continue reading “A Journey Back To 2014: What We’ve Learned About Advocacy”
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!”
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.”
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, This is Kim and I’m excited to share a blog post written by our extremely talented and adventurous friend Pamela Thistle of www.TheBlindThistle.com:
Hi, my name is Pamela Thistle and I have Usher Syndrome, which is Retinitis Pigmentosa and hearing loss. I’ve been wearing hearing aids far back as I can remember but it wasn’t until my early teens when the RP was discovered. My eye disease is slow-progressing and it wasn’t until I was in my late 30’s that I was deemed Legally Blind. It hit me hard and it was tough going for a year or so until I decided to fully embrace my disabilities. Since that moment my life has been a series of adventures and self-discovery. I am a retired Interior Designer but have discovered many interests over the years: photography, mountain biking, snowboarding, Olympic lifting and obstacle course racing to name a few. My motto in life is “No matter how hard it is or how many times I get my a$$ kicked I’m just gonna keep coming back!” Continue reading “What Do You See? by Pamela Thistle”
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”