Friends, we need your help.
Yesterday, we learned that Kai has been misdiagnosed for 7 years! It’s not RP or Stargardts, it’s autoimmune retinopathy (AIR). If docs had listened & run proper testing his sight may have been saved. 😭 😡 😭
After 3 negative genetic tests, today Kai was officially diagnosed with AIR. 3 different retinal autoantibodies (AAb’s) were found and he’s being tested for a 4th.
Doc recommends one of 2 treatment paths: Continue reading “AIR? …We need your help & connections.”
In the early days of Kai’s diagnosis I scoured the web for blogs written by sighted parents of kids who were losing their vision. I could not find any. Sure, I could find advocacy and awareness web sites and consumer groups, but I craved emotional honesty from another mom. I wanted to read her feelings, understand her struggles, and celebrate her wins. I wanted to know her feelings about her child’s inclusion (or lack thereof) and understand the anger and frustration behind her educational accessibility battles. And, most importantly, I wanted to know what it felt like to be on the other side: to have raised a child who became a strong self-advocate, who is highly-educated and employed. I wanted to know my child could beat the grim statistics. Now, 7 years later, I have found 6 moms (+ me) who are blogging about their experiences and I am so excited to share them with you!
Each of these blogs is written by a sighted mom of a blind or VI child(ren). Our kids range in age from 1-20, they have different diagnoses, and our philosophies, cultures, and religious backgrounds vary, but what we all have in common is the courage to share. Continue reading “The Courage to Share: Blogs by Moms of Blind/VI kids”
From perceptions to prom to college — and everything in between — Kristin & Kim cover multiple topics about raising kids who are blind. Click here or on the image below to listen in on the chat/rant that follows no outline or schedule!
Please give us a like, share, follow or comment. Related links are included at the end of the post.
ps. This is my first video experience so please be kind. Yes, I know I blinked A LOT! lol. — Kim
Image is a link to the video along with headshots of Kristin & Kim.
Continue reading “Thriving Blind & Navigating Blindness: Acceptance & So Much More”
I’m thrilled to bring you the final episode in this 4 part series “From A Mother’s Perspective” that has been created in partnership with Victoria Claire of www.VictoriaClaire-BeyondVision.com. Today’s guest post is written by Holly Bonner from www.BlindMotherhood.com. Welcome Holly and thank you for sharing your story with us.
A Day in The Life of Blind Motherhood
Written by: Holly Bonner, Blind Motherhood
The static noise of the baby monitor blares behind my head. I can hear my three-year-old calling me, “Mommy, I’m awake.” I’ve slept the entire night in our Lazy Boy recliner… again. I look down at my chest and can barely make out my 18-month old daughter who’s been curled up on top of me since 3am. She is the image of perfection, even to this blind mother. I carefully run my fingers through her hair, caressing her curls. I touch her cheeks with my palm, in an attempt to gently rouse her from her sleep. My day of Blind Motherhood begins. Continue reading “From A Mother’s Perspective – Part 4 Featuring Holly Bonner”
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”
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”