It Takes a Village: Doctors, Teachers, Coaches & Family

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”

It Takes a Village: Even in a Pandemic.

As the pandemic throws curve ball after curve ball and families and schools struggle to  adapt we, at Navigating Blindness, are excited to launch our new series entitled “It Takes a Village.”  Today we will hear from Sarah Immerfall as she explains what her son’s village looks like in the midst of a pandemic.

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 Sarah Immerfall

Hi! My name is Sarah and my son, Siah, was born completely blind. He has a condition called Oculoauriculovertebral Syndrome that caused microphthalmia and he wears bilateral scleral shells. He just turned 4 and is finally past a lot of medical treatment for issues unrelated to his vision, and we are so excited to focus solely on his progress! Continue reading “It Takes a Village: Even in a Pandemic.”

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”

From A Mother’s Perspective – Part 1 Featuring Victoria Claire’s Mom, Sandra Tinsley

Part 1 in a special series with www.victoriaclaire-beyondvision.com
Written by: Sandra Tinsley, mother of Victoria Claire

My daughter was diagnosed with Retinitis Pigmentosa when she was 19 years old and just beginning her adult life at university.  How dreadful that must have been for her.

I felt absolutely devastated for her and myself.  Having been such a good baby, totally happy, always laughing, nothing ever bothered her, she would tackle anything.

I cried, questioned myself asking was it something that I had done during my pregnancy, had I worked too hard?  We had moved house 2 week before she was born, she was also born with the cord around her neck.  You always think the worst trying to find answers. Continue reading “From A Mother’s Perspective – Part 1 Featuring Victoria Claire’s Mom, Sandra Tinsley”

Willingness is the Key

I am deeply tired. We have been having a rough time lately. My autoimmune disease has been flared up causing pain, fatigue and general malaise. Kai just underwent his bi-annual appointment at the eye clinic 4 hours from home. It’s hard to endure those long drives, long waits and painful tests when the outcome is only for school documentation — no treatment. Top that off with my oldest son having to learn some hard self-care lessons while away at college and sprinkle it with my dad’s inability to admit to a severe drug and alcohol addiction and I find myself wondering: Am I willing?   Continue reading “Willingness is the Key”

Special Education Mediation Experience

It’s been 5 days since our 8-hour mediation proceeding with the school district. (Yes, 8 long, emotionally draining hours.) The mediation was in response to a formal complaint we filed in September. Our allegations were that the school was not providing a Free Appropriate Public Education and was not upholding the Individuals with Disabilities Education Act in the areas of Accessibility and IEP Implementation.

I’m writing this article to assist other parents of blind children who are facing these issues. I hope to convey the process as we experienced it, as well as the immense emotional toll it took on our family. Continue reading “Special Education Mediation Experience”

As Featured on Life After Sight Loss

It’s Fall and I’ll be super honest, I want to hibernate. I’ve been in a self-imposed cave trying to gather my emotional resources to go through the mediation process against our local school system.  (Click here to read more about the decision to file the complaint with the GADOE.) Conflict resolution is hard and some days it I feel overwhelmed and allow myself to have a full-blown pity party.  Other days I duck and cover and simply stay in and off of social media.  Other days I remember to take care of myself and eat well, meditate, paint and swim. Today, I stuck my head out of my cave long enough to re-connect with people in the sight loss community. And, I was so encouraged to listen to a podcast by my new friend Derek Daniels at Life After Sight Loss. Continue reading “As Featured on Life After Sight Loss”

Blindness and the Sixteenth Birthday

Last week was Kai’s 16th birthday.  I remember when we first heard the words “your son is going blind” and the feelings of dread and loss that swept over me when I realized he would not be able to drive.  It’s been 6 years since diagnosis, but right now we are feeling the diagnosis and loss acutely — like a fresh wound. Continue reading “Blindness and the Sixteenth Birthday”

Featured

A New Way to See

The following post was originally written by Kim Owens for FamilyConnect Newsletter:

At the age of 10, my son, Kai, began to lose his vision to an aggressive form of Retinitis Pigmentosa (RP). My dreams for his life were shattered with the doctor’s words, “blindness, no known cure…” I was blind-sided by his diagnosis and could see only darkness. Continue reading “A New Way to See”