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!
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.”
Hi everyone! This post was written by our boys — Kai who is 17 and legally blind and Cash who is 21 and typically sighted — about their recent travel to Canada to visit the set of the Apple TV+ original See! That’s right, they even got to meet Jason Momoa and watch a fight scene in a cave, as it was being filmed. (Season 1, Episode 6 – which aired this past weekend.) The post is wrapped up with comments from both dad and mom. Enjoy!
From Kai’s Perspective:
My brother Cash and I’s trip to Canada taught me so much and it was a great experience. We traveled to Vancouver to meet my mentor Joe Strechay, who is the blindness consultant on a new Apple+ TV show called See. Joe is an awesome guy who has helped me learn how to thrive with a visual impairment, so I was super excited about the trip. Continue reading “See, Strechay & Momoa”
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”
Part 2 in a special series with www.victoriaclaire-beyondvision.com
Written by: Kim Owens, mom of Kai Owens.
Overnight our bright, happy, outgoing 9-year-old-son, Kai, became anxious and afraid. He refused to sleep in the dark and he clung nervously to my side. His personality changed drastically and we were terrified. Over the next year, we visited many specialists but received no clarity.
Then one day I noticed that his handwriting started in the middle of the page and trailed off the right side. I asked why he wasn’t using the left side of the paper and watched as he held the paper up to eye-level, and moved it from side to side, inspecting it closely. Kai’s last eye exam had been 4 months prior, but I became certain that something was wrong with his vision. The eye doctor agreed to take another look and that’s when he noticed that Kai’s retinas looked funny. Continue reading “From A Mother’s Perspective – Part 2 Featuring Kai Owens’ Mom, Kim”
This post was written by Kai Owens.
Hi, I’m Kai Owens. I am a 16-year-old athlete, drummer, and mainstream high school student. I’m also legally blind from Retinitis Pigmentosa. I’ve done a lot of Orientation & Mobility training locally, and I’ve also traveled extensively in the US and Vancouver, BC. I use my mobility cane at all times and I’ve recently been approved for a guide dog. I’d like to share a few of my observations about when drivers and mobility canes intersect.
At some point, most sighted people have been driving and seen a blind person and panicked. Some of the encounters are full of mistakes that really do not make any sense. I’m going to walk you through a few common mistakes drivers make in hopes of raising awareness. Continue reading “When Drivers & Mobility Canes Intersect”
Hi everyone, I’m excited to introduce you to my Instagram friend Jen from Fit Chick With The Stick. Jen caught my attention instantly because, like my son Kai, fitness has become her “fix.” Please join me in learning how fitness has impacted her sight loss journey.
My Own Independence Day by Jen Dutrow
The day is warm, the temperature is perfect, a light breeze blows through the open car windows. The sky is cloudless and a beautiful periwinkle blue. You’re driving along the coastline with your favorite music blaring.
Now, imagine never doing that again by yourself. That’s what happened to me after my eye doctor told me I’d have to hand over my license. I had driven to work that day not knowing that was the last day I’d ever drive. Continue reading “KnowledgeABLE Featuring Jen from Fit Chick With The Stick: My Own Independence Day”
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”
After several months wholly focused on resolving the instructional materials issues at my son’s high school, it was time to turn our attention towards the future. We opened a Vocational Rehabilitation case for my son and met with the local university’s disability services director regarding dual enrollment. Both meetings were emotionally draining as I realized that the process of advocating for my son’s needs in the educational and career environments will always be a challenge.
Now that my 16-year-old son is fully transitioned to Braille, Nemeth, cane usage and assistive technology he understands what he needs in order to be successful. He also understands that he is the best person to quickly identify challenges and attempt to solve issues through clear communication. I’m so proud of the growth he’s experienced over the last 6 years of vision loss. I’m learning to step back and let him lead. As a mom who has fought daily for his needs over the last six years this “letting go” is very emotional. Continue reading “The Process of Letting Go”
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”