Tag: feelings

Thriving Blind & Navigating Blindness: Acceptance & So Much More

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” →

Addison’s Diagnosis Story: Mainzer Saldino Syndrome & RP

We Have a Daughter. She is going blind. She helps us to see. Written by our special guest, Addison’s mom: Diane Bealer. 

When our oldest child (a girl) was just over a year old we noticed that she couldn’t see in the dark. This was a little worrisome to us but we didn’t freak out about it because we didn’t know we should for one, and we didn’t have any clue of the implications for another, the most important reason is that we weren’t ready for the truth at that point in our lives. As she got older we started noticing more clues that something wasn’t right with her vision. She would trip over things in dim light. She would freeze in the dark and not know where things were located. She NEVER got out of bed at night, unless there were bright lights on.

We took her to her first eye appointment when she was about 3-4 and the optometrist examined her and agreed that she needed glasses for nearsightedness but did not believe us about night blindness. It just did not occur in children that young. It wasn’t possible. This happened for 3-4 more years, every year we would go to the eye doctor and plead with them to do a more extensive exam, longing for some kind of answer. Every time it was the same thing. “Kids don’t get night blindness this young”. “You’re worrying too much”

Then the year she was going to turn 8 we took her to her annual exam, and once again I told the doctor of how she ran into things in the dim light and dark. How I knew in my heart something was going on with her eyes. He did the regular eye exam and said he couldn’t see anything wrong with her eyes.

Then I asked a question I hadn’t thought to ask before, “Will you do the same exam, but in the dark?” Continue reading “Addison’s Diagnosis Story: Mainzer Saldino Syndrome & RP” →

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” →

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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” →