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?”
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.
Contact via Facebook
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”
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?”
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”
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”
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”