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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”

What Do You See? by Pamela Thistle

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”

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”

On Your Mark, Get Set, Go! How Do You Keep Your Blind/VI Child Active & Safe?

by Kim Owens & Hilda Dunford (@OurBlindSide)

Many parents of children who are visually impaired or blind find it difficult to keep their children engaged in physical activities and sports. Hilda and I are often asked: How do you keep your child active and safe? Continue reading “On Your Mark, Get Set, Go! How Do You Keep Your Blind/VI Child Active & Safe?”

Kai’s Comforts 2019 Collection to Benefit the Governor Morehead School for the Blind in NC

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”

Addison’s Diagnosis Story: Mainzer Saldino Syndrome & RP

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”

Is Your Child Thriving In The Midst Of Vision Loss? Is Your Loved-One Succeeding Without Sight?

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.

It’s been 7 years now and we’ve overcome so much. Our son is thriving because of a few very important factors which are highlighted in Kristin Smedley’s new book Thriving Blind.

“If there’s a book that you want to read, but it hasn’t been written yet,
then you must write it.” ― Toni Morrison

Thank goodness Kristin took Toni Morrison’s wisdom to heart and wrote Thriving Blind! Oh, how I wish that our doctor had sat us down and explained what to expect and that our son could still have a wonderful, rich, fulfilling life. Oh, how I wish our doctor had handed us a copy of Kristin’s book which introduces her two sons who were each diagnosed with blindness at 4-months of age. Continue reading “Is Your Child Thriving In The Midst Of Vision Loss? Is Your Loved-One Succeeding Without Sight?”

Managing Money as a Person Who is Blind or Low Vision, Featuring Joe Strechay

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”

Noah’s RP Diagnosis Story

Blindsided by Blindness: Noah’s Diagnosis Story By Karen Tantzen

When my son was four years old I found out he was going blind – and I had no prior clue that anything was off with his vision.

Our story starts in September of 2015. I had taken my eldest son, Noah, to his pediatric ophthalmologist in Baton Rouge, Louisiana for a follow up visit. His acuities were off and he’d been prescribed a pretty strong pair of glasses the previous winter. The past spring, his doctor still wasn’t happy with how much Noah’s visual brain had developed since he’d begun wearing glasses, so he’d asked us to come in for an extra check up.

At this appointment, though, Noah’s acuities weren’t what concerned the doctor. The issue was his retinas. Continue reading “Noah’s RP Diagnosis Story”