Willingness is the Key

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”

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”

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”

The Advocacy Tightrope

In student advocacy, partnering with the IEP team is a key concept. However, some days it feels impossible to straddle the divide between my child’s accessibility needs and the school’s ability to provide timely, accessible materials. When I’m feeling overwhelmed, I ask myself:

  • What exactly is the issue?
  • What does his team believe is the best answer?
  • What does my child believe is necessary?
  • Is “good enough” okay, or will this problem seriously impact his future?

Continue reading “The Advocacy Tightrope”

A New Way to See

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”