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”
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”
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”
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”
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”
As our son’s vision diminished our world was expanding to include Retinal Specialists, Orientation & Mobility (O&M) instructors and Teachers of the Visually Impaired (TVI).
We were totally new to this world of visual impairments and had no idea how our son would be able to continue to thrive in school. Continue reading “The First Steps”
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”