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?”
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”
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”
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.”
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”
As discussed in my previous post we filed a Formal Complaint against our school system. This post will give an overview of what I learned about the complaint and mediation processes.
In early September, I downloaded the “formal complaint form” from our state’s education website. The document was four pages and asked a series of questions about the issues, and how we believed they could be resolved. The Formal Complaint only covered issues that occurred within a 1-year time period. Near the bottom of the form, there was a question asking if we would be willing to mediate? I selected “yes” thinking that I wanted to do everything possible to come to a resolution for my son. I submitted the complaint along with 20 pages of detailed records outlining the issues along with two recommendations for resolution. Then I waited. Continue reading “Formal Complaint & Mediation Processes Explained”
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”