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”

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?”

Hindsight 20/20 Featuring Jill Richmond

Hi everyone! I’m super excited to share a new segment on Navigating Blindness called Hindsight 20/20 which will feature parents of blind and visually impaired (B/VI) individuals who have agreed to answer 20 questions with hindsight. My hope is that their stories will encourage us parents who are still heads-down in the day-to-day thick of raising our children and advocating for their educational needs.

These interviews will each be very unique because blindness is a spectrum and each child, parent, and family has different situations, goals, and expectations.  As parents, we need to educate ourselves and consider the foundations’ advice, the doctors’ advice, the teachers’ advice and so on (the list of people weighing in on our children’s lives seems endless) but, ultimately, we are our children’s strongest advocates. We are responsible for providing the tools and guidance necessary for them to grow into adults who advocate for themselves in this big diverse world.

Join me in welcoming Jill Richmond as she shares her journey with her oldest son Aaron. Let’s navigate blindness, together.

Continue reading “Hindsight 20/20 Featuring Jill Richmond”

Unique Braille Gift Idea

I’m excited to introduce you to Lucky Touch Braille Fortune Cookie Company! The company is run by students at the California School for the Blind.  The students are involved in every aspect of the company’s operations. And as far as I know, they are the only company in the world creating braille fortune cookies! WHAT A COOL IDEA!

Lucky Touch Braille Fortune Cookie Company is run by a student board of directors at the California School for the Blind.  They make decisions about prices, pack cookies and sell cookies at events and by mail.  They also interview candidates for open positions on the board and select new members. — Judith Lesner, Board Advisor

About 2 weeks before Valentine’s day I reached out to them to place an order for 50 braille fortune cookies. I chose “plain” and “standard uncontracted braille” but they also offer chocolate dipped, contracted braille and customized messages.  The cookies arrived individually wrapped and in perfect shape — not a single broken cookie! Continue reading “Unique Braille Gift Idea”

Be Aware: Signs Ahead.

Signs. They are everywhere. Sometimes they alert us to danger, sometimes they send us on a detour. Our sign was created specifically to create a safe space for our blind son to traverse his high school parking lot filled with student drivers.

A couple of weeks ago in a Facebook forum for parents of blind kids, a parent asked how other people handle school drop off/pick up. I read several responses and decided to post a picture of our solution: a sign.  Continue reading “Be Aware: Signs Ahead.”

Preparing for Battle: Support & Organization

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”