Navigating Blindness is thrilled to launch part 2 in our series “It Takes a Village.” Today we will hear from Wendy Rankine as she describes who’s in – and who’s out – of her son’s village including doctors, teachers, coaches, and family.
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 Wendy Rankine
Our oldest son, William, was born with LCA. We were VERY fortunate that he was diagnosed quickly. At William’s 3-month check-up, our pediatrician immediately sent us over for William to be evaluated by an older Ophthalmologist. We are in Central Georgia, and this local Ophthalmologist listed 5 things on his referral note to a Pediatric Ophthalmologist at Emory in Atlanta that William could possibly have. LCA was one of those 5 things. As soon as I read the description of LCA, I knew that is what William had. At 5 months William was diagnosed by the Pediatric Ophthalmologist at Emory with LCA and by the time William was 13 months old genetic testing confirmed it. William does not have any other issues developmentally. We didn’t need big-name hospitals, we just needed wise old doctors who had seen a lot in their careers that could quickly and easily guide us in the right direction. Continue reading “It Takes a Village: Doctors, Teachers, Coaches & Family”→
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.
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.
Hi friends, I’m super excited to share another Hindsight 20/20 article. This article was written by Mary Woodyard about raising her son, Tommy, who is currently a senior at the University of Georgia. Tommy also happens to be legally blind. I’m so grateful that Mary took the time to share her wisdom with us parents who are still in the thick of advocating for our children’s accessibility needs in school.
Each 20/20 interview will be unique because blindness is a spectrum and each child, parent, and family has different circumstances, goals, and expectations. As parents, we need to educate ourselves and consider advice from reliable sources — foundations, doctors, teachers, and so on (the list seems endless) — but ultimately, we are our children’s greatest advocates. I strongly believe that other parents who have “been there, done that” are our best resources. So, let’s navigate blindness together!
Alright parents, grab a cup of coffee or your beverage of choice, get comfy and enjoy.
1. What was the first symptom you noticed and what was your child’s age?
He was born at 26 weeks during what I thought was a normal pregnancy. He had contracted an infection which made him very sick; but, it did not impact me at all. When he was born, there was confusion as to his gestational age. The doctors were not sure if he was 25 weeks or 26 weeks. There was no consensus until he was a month old. Doctors warned me his brain was underdeveloped and felt that he would have GI issues. In addition, he had: a hernia, a hole in his heart and a pound of fluid in his body that was not supposed to be there. They were worried that his brain was not developing. He was 1.9 pounds when he was born. They told me not to worry about his eyes – they would be fine.Continue reading “Hindsight 20/20 Featuring Mary Woodyard”→
Check out this fun and informative interview between Thriving Blind’s Kristin Smedley and Navigating Blindness’ very own Kai Owens! They talk skim boarding, surfing, drumming, main stream schooling, college plans and much more. Kai shares a lot about what it takes to be thriving blind!
Seven years ago a pediatric ophthalmologist called me at work to say that our 10-year-old son’s retinas were deteriorating. I was so stricken and confused by the words he used – deterioration, progressive, no cure, no treatment – that before we hung up I asked him, “Are you telling me that he’s dying or going blind?” “Blind,” he replied.
The way the news was delivered was so shocking that the memory still brings a visceral pang of grief. With one quick phone call, our lives were changed. We learned that our precious, youngest son, Kai, would go blind. The life we had envisioned for our bright, active child would be dimmed by blindness. We were shattered. We had no template and no understanding of what it meant to live without sight. We had never even met a person who was blind.
Unfortunately, for the first several years our family had to go it alone. We live in a small rural area 3-hours from the nearest blindness advocacy group. Kai was the first child in our county to experience progressive vision loss. We had to chart our own path, figure out our options and make the necessary connections to obtain services for our son.
A few months ago my oldest, typically-sighted son, Cash, called to say that he and his girlfriend were out hiking and found a beautiful log bridge over a stream. As they were crossing the log bridge, they decided to sit down and relax a bit. After getting comfortable they found themselves free-falling into the water below. The log broke! After air-drying in the sun he realized that his wallet was no longer in his pocket. (I later found out that he’d also lost his passport! But that’s a different story.)
Knowing that he was away from home without a wallet stressed me out and I immediately spun into full-blown-problem-solving-mom-mode. But in the midst of lecturing him and outlining all the steps that would be required to replace his items, I realized that this is his problem to solve and he can handle it. I relaxed, took a deep breath and offered suggestions while feeling a wee bit of satisfaction knowing he was about to embark on a total pain-in-the-butt journey and learn a lot of valuable lessons along the way.
So when my husband found our missing credit card laying on the floor in the van, I’m sure he felt a twinkle of justice knowing that I had been feeling the stress of my disorganized money management methods. Typically, I pay for my purchase then drop my payment method or change into my cavernous disorganized pocketbook. And, sometimes, when I hit the brakes just right the disorganized contents spill out of my unzipped purse onto the floor of the van.
When the hubs pays for something, no matter how long the line is behind him, he painstakingly places his change, payment method, and receipt into the proper spot in his wallet. It. Drives. Me. Nuts.
I’m thrilled to bring you the final episode in this 4 part series “From A Mother’s Perspective” that has been created in partnership with Victoria Claire of www.VictoriaClaire-BeyondVision.com. Today’s guest post is written by Holly Bonner from www.BlindMotherhood.com. Welcome Holly and thank you for sharing your story with us.
A Day in The Life of Blind Motherhood
Written by: Holly Bonner, Blind Motherhood
The static noise of the baby monitor blares behind my head. I can hear my three-year-old calling me, “Mommy, I’m awake.” I’ve slept the entire night in our Lazy Boy recliner… again. I look down at my chest and can barely make out my 18-month old daughter who’s been curled up on top of me since 3am. She is the image of perfection, even to this blind mother. I carefully run my fingers through her hair, caressing her curls. I touch her cheeks with my palm, in an attempt to gently rouse her from her sleep. My day of Blind Motherhood begins. Continue reading “From A Mother’s Perspective – Part 4 Featuring Holly Bonner”→
Hi, this is Kim and I want to warn you that as a parent of a child who is losing sight, this is an emotionally tough read. However, I feel it’s important for us to deeply listen to adults who are adapting to blindness. I’d like to thank Victoria for her vulnerability in sharing.
Overnight our bright, happy, outgoing 9-year-old-son, Kai, became anxious and afraid. He refused to sleep in the dark and he clung nervously to my side. His personality changed drastically and we were terrified. Over the next year, we visited many specialists but received no clarity.
Then one day I noticed that his handwriting started in the middle of the page and trailed off the right side. I asked why he wasn’t using the left side of the paper and watched as he held the paper up to eye-level, and moved it from side to side, inspecting it closely. Kai’s last eye exam had been 4 months prior, but I became certain that something was wrong with his vision. The eye doctor agreed to take another look and that’s when he noticed that Kai’s retinas looked funny. Continue reading “From A Mother’s Perspective – Part 2 Featuring Kai Owens’ Mom, Kim”→