From A Mothers Perspective – Part 3 Featuring Victoria Claire

Hi, this is Kim and I want to warn you that as a parent of a child who is losing sight, this is an emotionally tough read. However, I feel it’s important for us to deeply listen to adults who are adapting to blindness. I’d like to thank Victoria for her vulnerability in sharing.

Part 3 in a special series with www.victoriaclaire-beyondvision.com
Written by: Victoria Claire

A Rejection Of Motherhood

Here is the 3rd part to the “From A Mothers Perspective” blog series. So you have had the perspective of my mum about how she felt when I was diagnosed with RP, you’ve also heard about Kim Owens feelings with her son Kai, so now I give you a completely different perspective…. from the mother that never was. Continue reading “From A Mothers Perspective – Part 3 Featuring Victoria Claire”

From A Mothers Perspective – Part 2 Featuring Kai Owens’ Mom, Kim

Part 2 in a special series with www.victoriaclaire-beyondvision.com
Written by: Kim Owens, mom of Kai Owens.

Letting Go

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 Mothers Perspective – Part 2 Featuring Kai Owens’ Mom, Kim”

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

KnowledgeABLE Featuring Jen from Fit Chick With The Stick: My Own Independence Day

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”

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”

The Process of Letting Go

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”

Breathe, Mama Bear, Breathe

Last week was the first week my legally blind son was back in school since the holidays. It was also the week that the action items in our formal mediation agreement were to be implemented by his high school.

The amount of internal stress I felt about his return to school took me by surprise. My fight-or-flight instinct kicked-in keeping my muscles tense, my breathing shallow, my mind jumpy and making sleep elusive. Continue reading “Breathe, Mama Bear, Breathe”