Hi friends, we are so excited to kick off our 4th year of Kai’s Comforts! This year’s collection of new, soft, highly textured blankets and pillows will benefit the Governor Morehead School for the Blind in North Carolina.
Kai is a 17-year-old with a rare, progressive, eye disease called Retinitis Pigmentosa (RP). RP and other retinal diseases cause blindness. Night blindness is one of the first symptoms that many children experience and it can cause severe anxiety. Kai collects new, highly textured, soft, pillows and blankets to help comfort other kids facing blindness. Your donation will comfort a child experiencing vision loss.
Drop Bins bins are located in Statesboro & Brooklet at Pladd Dot Music, SE Tire & Service, and SEB high school’s front desk. Collection Dates Nov. 1-30, 2019.
Here are a few great articles about previous deliveries. Please get in on the fun! Continue reading “Kai’s Comforts 2019 Collection to Benefit the Governor Morehead School for the Blind in NC”
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.
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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”
We Have a Daughter. She is going blind. She helps us to see. Written by our special guest, Addison’s mom: Diane Bealer.
When our oldest child (a girl) was just over a year old we noticed that she couldn’t see in the dark. This was a little worrisome to us but we didn’t freak out about it because we didn’t know we should for one, and we didn’t have any clue of the implications for another, the most important reason is that we weren’t ready for the truth at that point in our lives. As she got older we started noticing more clues that something wasn’t right with her vision. She would trip over things in dim light. She would freeze in the dark and not know where things were located. She NEVER got out of bed at night, unless there were bright lights on.
We took her to her first eye appointment when she was about 3-4 and the optometrist examined her and agreed that she needed glasses for nearsightedness but did not believe us about night blindness. It just did not occur in children that young. It wasn’t possible. This happened for 3-4 more years, every year we would go to the eye doctor and plead with them to do a more extensive exam, longing for some kind of answer. Every time it was the same thing. “Kids don’t get night blindness this young”. “You’re worrying too much”
Then the year she was going to turn 8 we took her to her annual exam, and once again I told the doctor of how she ran into things in the dim light and dark. How I knew in my heart something was going on with her eyes. He did the regular eye exam and said he couldn’t see anything wrong with her eyes.
Then I asked a question I hadn’t thought to ask before, “Will you do the same exam, but in the dark?” Continue reading “Addison’s Diagnosis Story: Mainzer Saldino Syndrome & RP”
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.
Now that my youngest, legally blind son, Kai, is spending money away from home without parental supervision, I catch myself wondering: Will he pay too much? Will he get proper change? Will unauthorized charges be placed on his bill? Will he drop his money? Continue reading “Managing Money as a Person Who is Blind or Low Vision, Featuring Joe Strechay”
This post was written by Kai Owens.
Hi, I’m Kai Owens. I am a 16-year-old athlete, drummer, and mainstream high school student. I’m also legally blind from Retinitis Pigmentosa. I’ve done a lot of Orientation & Mobility training locally, and I’ve also traveled extensively in the US and Vancouver, BC. I use my mobility cane at all times and I’ve recently been approved for a guide dog. I’d like to share a few of my observations about when drivers and mobility canes intersect.
At some point, most sighted people have been driving and seen a blind person and panicked. Some of the encounters are full of mistakes that really do not make any sense. I’m going to walk you through a few common mistakes drivers make in hopes of raising awareness. Continue reading “When Drivers & Mobility Canes Intersect”
Hi everyone, I’m excited to introduce you to my Instagram friend Jen from Fit Chick With The Stick. Jen caught my attention instantly because, like my son Kai, fitness has become her “fix.” Please join me in learning how fitness has impacted her sight loss journey.
My Own Independence Day by Jen Dutrow
The day is warm, the temperature is perfect, a light breeze blows through the open car windows. The sky is cloudless and a beautiful periwinkle blue. You’re driving along the coastline with your favorite music blaring.
Now, imagine never doing that again by yourself. That’s what happened to me after my eye doctor told me I’d have to hand over my license. I had driven to work that day not knowing that was the last day I’d ever drive. Continue reading “KnowledgeABLE Featuring Jen from Fit Chick With The Stick: My Own Independence Day”
Hi there Navigating Blindness followers, this is Victoria Claire from www.victoriaclaire-beyondvision.com and I’m excited to share how creativity has helped me cope, grow and find joy with vision loss.
“Disability is not an impairment to creativity.” This is one of my statements when engaging with the public while speaking as a sight loss awareness advocate.
As a professional artist in contemporary sculpture, with a career spanning 25 years, I would like to share with you the importance of my creativity whilst traveling along my pathway of sight loss. Creativity became my first port of call when I was at my lowest point after being diagnosed with RP at the age of 19 in 1994. I was a young art student studying graphic design at art college when I found out I was going to go blind. Initially, I didn’t know how to take in what I had been told. For a while, I tried to ignore it and carry on with my life as an art student. Continue reading “KnowledgeABLE Featuring Victoria Claire: Seeing Through My Creativity”
Check it out: Navigating Blindness and Kai Owens were featured on Victoria Claire’s New Beyond Vision Website
Through acceptance, adaptivity, and accessibility there is an amazing life for every visually impaired person. – Victoria Claire
Hi friends, This is my final post in a 3-part series about my family’s Special Education Formal Complaint and Mediation proceeding. If you are a new visitor to this blog, I’d recommend starting with the previous posts: Special Education Mediation Experience and Formal Complaint & Mediation Processes Explained. Continue reading “Preparing for Battle: Support & Organization”