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Enjoy!

Kim (mom) and Kai (son) Owens

[ID: Kim stands in front of the US Capitol]

How it started
In July of 2024, I applied to become a member of the Prevent Blindness ASPECT Patient Engagement Program. Thrilled to join Cohort #8 (The Great Eight!), I attended six months of bi-weekly trainings over Zoom.

ASPECT stands for: Advocacy, Support, Perspective, Empowerment, Communication, and Training. The program culminates in an advocacy opportunity on Capitol Hill. I learned so much about advocacy from the experts at Prevent Blindness. The most important lesson being the difference in “BIG A” and “small a” advocacy. Advocacy encompasses any public action to support and recommend a cause, policy, or practice. “BIG A” advocacy focuses on changing systems, policies, laws, or rules at the local, state, and national levels. “Small a” advocacy is self-advocacy and allyship. Self-advocacy means speaking up for yourself and communicating your needs, desires, and rights. Allyship means speaking up for others such as family, friends, and loved ones. Both “Big A” and “small a” advocacy are important.

As the mother of a blind child, I have always advocated for my son in educational, private, and public settings but I didn’t have much experience with BIG A advocacy. I think the most important factors I learned in the program were how to tailor my story to a specific audience in succinct 1, 2 and 5-minute formats.

How it concluded
The last four cohorts of ASPECT gathered to in DC to connect and share our stories with Members of Congress.

There were several events leading up to the big day on The Hill including the Story Slam and The Vision Monologues. I was honored to be one of six advocates chosen to share my story with the large group of blind and low vision individuals, allies, and medical professionals. Below is a video of me reading my 5-minute story titled, If Only. This 5-minute story was tailored to speak directly to medical professionals.

[ID: Kim stands behind a podium and delivers her story]

For more about this adventure please visit (and follow us) on Instagram: Day 1, Day 2, Day 3 & Day 4.

If you enjoy our longer form content, please remember to subscribe to our Substack (it’s free!).

Thanks,

Kim

At the age of ten, my youngest son, Kai, unexpectedly lost his sight. Grief gave me tunnel-vision, all I could see were the things that blindness would steal from him. People with sight generally agree vision is the most valuable of the traditional five senses, followed by hearing, touch, smell, and taste.

My unchecked internalized ableism made me fearful. How would Kai interact with the world around him? How would he continue to do all the things he loved?

Thankfully, with support from his family, educators, and the disabled community, Kai found a path forward. To surf, he floated in the ocean until he understood the rhythm of the waves. When the time felt right, he’d paddle fast and hop on his board. To read, he learned to differentiate between the tiny dots of braille until they made letters, then words, then full sentences. 

Once, on a road trip, we stopped for smoothies. Back on the road, he took a long sip then said, “Ugh, gross. This tastes like cheesy cardboard!”

He passed the cup to me and I gave it a sniff. It smelled normal – strawberry-banana. That’s when I noticed the large truck blocking the intersection ahead. I said, “I think you’re smelling a trash truck. Hold on, we’re about to pass it.” 

After a good laugh, and some distance, he tried it again and said, “Okay, it’s tasty now.”  

To this day, we still call the trash truck the cheesy cardboard truck.

I always loved to comb the beach for shells and shark teeth while my kids surfed and skimmed. I would have described beachcombing as a purely visual experience – a treasure hunt. Late one afternoon, as I handed Kai my finds, he said, “Mom, do you hear the tinkling shells when the waves hit the beach?”

“No,” I said. 

“Close your eyes and tune in.”

I did and there they were! A beautiful chorus of tiny shells singing in the waves. How had I missed that all these years? Gratitude washed over me.

Over the years, I’d realized that Kai’s world is different – but not less. He experiences the world in unique and expansive ways. Now when I’m feeling overwhelmed or anxious, I close my eyes and tune in to my other senses. It’s become a meditative practice that I can do anywhere at almost any time.

At the beach I intentionally tune into the sound of the waves, the feel of the hot sand on my feet, the smell of the salt air, and the taste of the refreshing drinks from the cooler. The practice of closing my eyes and using my other senses is grounding and brings me into the present. Next time you’re feeling off-kilter or in need of gratitude remember the tinkling shells and close your eyes to expand your sensory awareness.

The Transition to the Teen Years

If your child has reached the high school years, you have likely already discovered that helping a child navigate life as a blind/low vision (BLV) individual comes with challenges that are not always “as easy as pie.” Now your child has entered the exciting, though sometimes tricky, teen years, and it may feel like you have been dropped into a whole new dimension. Hormones are raging, fitting in becomes a daily priority, and you keep hearing words like transition planning, independence, and adulthood.

Beyond wishing there were a step-by-step manual to guide you through these years, your focus is simple: you want your child to be happy, to thrive, and to proudly walk across that stage at the end of senior year. At least that is how my mom felt when she was in your shoes. At this point you may be wondering, How can I best support my student while they’re in high school so they are well-prepared for an independent life after high school?

My Personal Transition Story

My name is Marisol Carmona. I am a coach for parents of BLV youth at the Perkins School for the Blind’s Transition Center. In addition to guiding families through the transition journey, I am also congenitally blind. While I eventually earned a college degree, moved to the big city, secured a full-time job, and later completed a Master’s degree in Social Work, my own transition to college was far from smooth.

From seventh grade through my senior year of high school, I was assigned a full-time aide. Rather than receiving meaningful instruction from a Teacher of the Visually Impaired on how to function independently, most of my support came from a very kind but untrained aide who essentially acted as a personal assistant. She took my notes, read my materials, retrieved my lunch from the cafeteria, and unintentionally left me feeling socially self-conscious.

When I arrived at college, the effects of that experience became clear. At the expense of my GPA, and the six years it took me to complete my undergraduate degree, I had to learn essential skills the hard way; by myself, with no TVI or training on how to do my school work independently. I slowly developed skills in self-advocacy and adaptive technology, strengthened my academic writing, and learned how to navigate social situations with growing confidence. Most importantly, I experienced a major shift in mindset, from sheltered to open to growth.

The Gap Between School and Adulthood

While every student’s journey is unique, experiences like mine are not uncommon. Even after receiving services and educational support throughout school, many BLV students are still underprepared for the realities of life after graduation. Skills such as self-advocacy, independent problem solving, and navigating unfamiliar environments often require more intentional practice than students receive before leaving high school.

Students planning to attend college are often unaware of the expectations they will face once familiar supports disappear and the shift from IDEA to ADA protections takes effect. Research and experience in the field of blindness education continue to highlight these gaps. Even when students have access to accommodations and specialized services while still in high school, those supports do not always translate into the practical skills required for college, employment, or independent living. Further, these services end upon leaving high school.

How the Compass Program Helps

Perkins’ Virtual Compass Program was created in response to this reality. Compass is a virtual nine-month enrichment program for blind and low vision high school students across the country. Through transition-focused coaching, role modeling, and interactive workshops, students explore the practical and personal aspects of preparing for life after graduation, whether their next step is college, employment, a gap year, or another path.

Many families find themselves navigating unfamiliar territory during this stage. A student may aspire to attend college in a busy city but have limited technology skills, little experience traveling independently, or no clear plan for navigating the college application process. Meanwhile, the Teacher of the Visually Impaired (TVI) supporting that student may only meet with them occasionally. Compass exists to help students and families bridge these gaps through structured guidance and skill development.

Building Real-World Skills

Throughout the program, students work on developing skills that support both academic readiness and personal independence. These may include practicing self-advocacy, strengthening assistive technology skills, exploring college and career pathways, navigating social environments, and building confidence in decision-making.

One tool we use to guide this work is the Perkins College Readiness Checklist. This framework helps students and coaches evaluate current abilities across nine key areas related to college-level academics and adult independence. The Checklist provides a clearer picture of where a student already feels confident and where additional growth may be helpful, allowing students and coaches to set meaningful goals together throughout the program.

Compass also takes a holistic approach to transition planning. Transition coaches work closely with students, as well as parents and TVIs, to align goals and strengthen support systems. By working together, students, families, and educators can create a clearer pathway toward independence and success beyond high school.

What Families Experience in the Program

Students and families often notice meaningful shifts over the course of the program. As students practice new skills and explore future possibilities, their confidence grows and their sense of direction becomes clearer.

Student testimonial:

 “Throughout the Compass program, I have become more confident in the transition to college and in moving toward a college lifestyle. I also now have more information about resources I can use to make this change go more smoothly.”

Parent testimonials:

 “I truly believe that the Compass Program lives up to its name, it is like a compass pointing the way for me and my daughter as we transition from high school to college. As a parent, I’ve learned that what we often overlook as ‘small issues’ can actually be big challenges for a child with visual impairments. Through this program, I feel more confident about my child’s future and better prepared to support her as she prepares for college life.”

“I have become more knowledgeable and confident about advocating for my son. Understanding the gaps we must close before college or independent living has helped me appreciate the time we still have to prepare and be proactive about the challenges ahead. I am so grateful for Compass and the coaching we received from the team.”

How Compass Is Funded

Compass is typically funded by individual state Vocational Rehabilitation (VR) agencies for the blind through Pre-Employment Transition Services (Pre-ETS) funding. As a transition-focused program, Compass qualifies for Pre-ETS funding, and parents can often request that their VR agency cover the program tuition.

Looking Ahead

The transition from high school to adulthood can feel overwhelming for both students and parents. But with the right opportunities, guidance, and support, blind and low vision students can build the skills and confidence they need to thrive and meet their potential. Along the way, many students experience an important shift, not only in what they know how to do, but in how they see themselves and what they believe they are capable of.

Compass is not about providing students with answers, it is about empowering them to discover what they are capable of doing for themselves. And if my own journey has taught me anything, it is that with the right tools, support, and mindset, the possibilities are far greater than many people imagine.

The first time I turned the ignition of my used, greenish-orangish, Toyota Celica, a wave of relief washed over me – FREEDOM! My Prince cassette tape blasted on repeat as the cool Portland air whooshed in through the windows. That vehicle, that my friends dubbed “Gr-orange,” delivered many coming-of-age adventures.

So, when a retinal specialist said that our ten-year-old son was “going blind,” one of the first questions we asked was, “Will he be able to drive?”

“No,” he’d responded. “He’s already legally blind and will continue to lose sight.”

For a few years post-diagnosis, our lives ground to a halt as we figured out how to navigate life again. But as Kai’s 16^th birthday approached, he had more than five years of orientation and mobility (O&M) training and we’d all returned to life at full speed. A fast walker with a white cane, Kai stayed active. He’d even found adaptations that allowed him to skim board, surf, and skateboard with his friends – but driving was out of the question.

But the questions still came. As his classmates reached this milestone birthday, driving was a major topic of conversation. Kai’s friends would ask, “When are you getting your license?”

He’d laugh it off saying, “Think about that for a moment.”

After an awkward silence, his friends typically replied with something like, “Duh, I’m sorry” or “Ah, man, I forgot that you can’t drive.”

I’d never known anyone who was blind, so I couldn’t foresee all the challenges we’d face, but his 16th birthday stood out from the beginning as something that would be a huge hurdle. As the big day approached, the sensation of loss rolled back into our lives. Our town in rural Georgia lacked public transportation so not having wheels was a true access issue. The feelings of anger and injustice crashed into Kai, hard. We listened as he wrestled with his reality and we provided comfort when his tears spilled over. We had several emotion-filled discussions and we did our best not to problem solve, understanding that there were solutions, but Kai’s grief needed space and a voice. We needed to allow him to fully express himself, without placing an added burden of brainstorming solutions, hearing platitudes, or considering silver-linings.

For more on this topic click here to read about the Ring Theory for supporting people in crisis: comfort in, dump out.

After the intensity of his feelings subsided, I initiated discussions about rideshares and mass-transit systems like the Metro we’d rode in DC and the MAX in Portland. We gave him a flexible curfew so that he could go out with his friends and return home based on the driver’s schedule. And our older son, Cash, offered Kai rides so he could venture out parent-free. Yes, there were options, but there was also grief. (At that time rideshares did not allow anyone under 18 to book a ride without an adult present.)

Later, we went to the Department of Motor Vehicles and applied for his State ID. It was a trend for new drivers to post a picture on social media holding their licenses in front of the DMV sign. As a joke, Kai decided to post a picture of him holding his white cane and his new State ID in front of the sign.

Sixteen didn’t mean driving, but it became a grand celebration of independence. We gave Kai a fully-accessible, tactile Bradley watch. And held his weekend-long birthday party at his favorite place, the beach. He and his friends skimmed and surfed the hours away then relaxed in the pool after dark. We ate cupcakes and pizza, and laughed. There was so much laughter.

At one point, he and his friends met some girls, and he pulled me aside to say, “Please video a few of our skims, but make yourself scarce...” I felt relieved realizing that we’d made it past this major milestone, and how even without access to a car, he had become a typical 16-year-old – snark and all.

When our younger son’s vision diminished our world expanded to include Retinal Specialists, Certified Orientation and Mobility Specialists (COMS), and Teachers of the Visually Impaired (TVI).

Our older son had no disabilities or conditions requiring special services, and we felt overwhelmed and ignorant about the process of obtaining proper services through the school system. We lived in a small, rural, southern town and Kai was the only child in the area with a degenerative eye disease. Anytime we had a question, the school administration answered “We don’t know. We’ve never done this before.” And neither had we. As a mom, I felt determined to give Kai every possible opportunity to succeed. I guzzled coffee, searched the web, cried, talked to other parents, and took the next best step.

The process at Kai’s school rolled out like this:

1. Functional Testing determined how Kai utilized his limited sight. By law, public schools must provide functional testing free of charge to every visually impaired child. Do not allow your child’s school to skip this step. Special education administrators often tell parents that their child doesn’t need vision services yet, but without functional testing, there is no way to know for sure, so insist on it.

2. The Individualized Educational Program (IEP) team met. Attendees included, me, the special education director, the school district’s TVI, the principal, and Kai’s general education teachers. Together we reviewed the results of the functional testing and created Kai’s first IEP to kick off in fifth grade. The plan outlined specific accommodations that Kai would receive, the amount of time he’d spend with specialized service providers, and goals. Goals are necessary to prove the plan is working.

Kai’s first accommodations included a seat near the teacher facing away from the windows because light hurt his eyes, extended time to complete tests and assignments, magnifiers, large print, testing in a quiet environment, the assistance of a special education coordinator who could help him read long sections of text or describe complex diagrams that were difficult for him to access with his limited vision.

Due to the nature of Kai’s diagnosis, we needed to prepare him to access classroom materials as his sight deteriorated. To ease his adaptation to blindness, we advocated to ensure that his blindness skills were always one step ahead of his sight loss. Kai’s first IEP services included weekly sessions with a TVI who taught him introductory braille and how to begin using assistive technology. He also received monthly orientation and mobility (O&M) lessons to introduce white cane travel.

The main goal we focused on in the beginning was to keep him on grade level with his peers while slowly integrating the new skills he learned.

Many days I felt like the battle to obtain and keep services was too intense. And throughout the years, I questioned the decision to keep Kai mainstreamed in our local public school. Occasionally we visited schools for the blind and found some to be excellent -- others not so much. Kai loved school and had a strong group of friends, so we believed staying in his neighborhood school would ensure inclusion and the most direct route to higher education and employment. But in my experience, mainstreaming only works when the parent(s)/guardian(s) partner with the school to create the plan and advocate fiercely for accountability.

(Note: Thirteen years after diagnosis, Kai is about to graduate Summa Cum Laude from the University of Georgia. He’s the leader of a popular jazz band, and just applied to graduate schools in New York City.)

Please join the conversation.

Parents, post your experiences, questions, and concerns in the comments.
Blind and Low vision adults, your voices are always welcome here.
Blindness educators, if you have something to add please chime in.

The bright dreams I had for my ten-year-old son’s future dimmed when the doctor said “degenerative sight loss, no known cure…”

I connected with other parents of blind children through Facebook but most, like me, seemed engulfed by grief and fear. One mother told me that she would never allow her blind toddler to use a cane because other kids would bully him. Another mom wouldn’t tell her young daughter of the pediatric ophthalmologist’s diagnosis of progressive sight loss, because she was afraid that telling her would make it manifest. People at church believed they could pray Kai’s blindness away. And several close friends simply disappeared.

One day I came across a blog post by a successful blind author and speaker, who’d lost her vision when she was younger. A television journalist wanted to promote her work and asked to interview her mother. However, her mother refused to participate saying, “the wound still hurts.” Stunned that the mother’s grief held her captive thirty years later, I became determined to find a way forward.

As Kai learned braille, assistive technology, and orientation and mobility skills, I also worked to find a new way to see. My first lesson came through my mindfulness practice. For more than ten years, I’d sat silently for 20 minutes a day. I gradually became aware that my thoughts on blindness included words like: darkness, loss, grief, loneliness, and unemployment. As I became increasingly aware of my inner dialogue, I committed to allowing myself to feel the pain of it all during those daily sessions. The daily release of emotion improved my energy and outlook. I began talking to a counselor and attended a week-long silent retreat where I collapsed in bed and cried for days. It was extremely painful to let go of the bright, shiny story I’d created on the day Kai was born, and even more challenging to release the dark, shadowy story I’d made up about blindness. But eventually the letting go created space for the shimmer of the present moment to appear.

My first conscious experience of this new way to see happened during one of Kai’s Orientation and Mobility lessons. I dropped him off with the instructor and proceeded to the bakery where we’d arranged to meet. I was at the counter, ordering his blueberry muffin, thinking I had a few minutes before he and his instructor would arrive when suddenly, I caught an unexpected glimpse of a little boy wearing a hat and dark glasses, holding a white cane. My heart broke, stricken with grief. My beautiful son, going blind, his future limited.

That’s when I noticed it: HIS SMILE!

In that moment, I chose to lay down “my story” and see clearly. What I saw was a little boy who had successfully navigated crossing the busy street utilizing his white cane. He didn’t seem sad or frightened. He was radiating accomplishment and independence.

Thirteen years after diagnosis, Kai is about to graduate Summa Cum Laude from the University of Georgia. He’s the leader of a popular jazz band, and he just applied to grad schools in New York City. He’s living the life of his dreams.

I’ll close by paraphrasing a Buddhist parable:

Two monks walked along a path together. They came to a stream and found a young woman standing at the edge. She was unable to cross without help. The older monk offered to carry her across, and she gratefully accepted.

A few hours later, as the monks continued their silent journey, the younger monk erupted angrily, “How dare you carry her! We took a vow not to touch a woman!”

The older monk smiled at his friend and replied gently, “I picked her up and put her down hours ago. Why are you still carrying her?”

Parents, will you join me in laying down the heavy burden of our grief and fears about the future? Let’s dwell in the present moment where all things are still possible.

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• DIVERSITY: Blind, low vision, and DeafBlind students represent diversity in the general student population.

• EQUITY: Blind students have the right to receive educational materials in accessible formats such as braille.

• INCLUSION: Our students have the right to be included in all aspects of public life and community.

• The Department of Education is using these DEI terms to cancel grants that serve our community! We can’t let that happen!

You may remember, that I fought a vicious battle to obtain braille for Kai’s high school math and science classes. We ‘won’ in mediation, and Kai got what he needed, and we made braille access easier for all students in our district, but now the nation’s current and future braille readers are at risk.

BELOW IS THE INFORMATION YOU NEED TO KNOW

This information was published by AERBVI and Prevent Blindness and edited for our audience.

On September 5, 2025, the U.S. Department of Education issued non-continuation notices to all three national Braille Training Grants under the 235E Demonstration Program: Braille Training. This means that for the first time in decades, there will be no federal support for developing specialized braille training resources in the United States.

The three programs that have been eliminated are:

• California State University, Los Angeles – focused on braille and technology training

• University of Massachusetts at Boston – focused on professional development across the lifespan

• University of South Carolina Upstate – focused on preparing new teachers and service providers

This decision impacts the entire field:

• No new training resources for Teachers of Students with Visual Impairments (TVIs) to provide braille literacy to their students.

• No additional training for Vision Rehabilitation Therapists (VRTs) to serve adults.

• No professional development or technology innovation to address the braille literacy crisis across the lifespan.

WHY THIS REQUIRES YOUR VOICE
Each of the three universities is pursuing its own appeal through their institutional channels. The Department’s decision to terminate an entire braille program category cannot go unchallenged.

It is also important to note: all the programs that received non-continuation notices this cycle were related to sensory impairments. This is a targeted and disproportionate impact on children and adults who are blind, DeafBlind, or low vision.

Emails are too easily ignored. Calls to state offices of U.S. Senators carry weight. Especially when they come from constituents. We must ensure that Senators, particularly Republicans in the targeted states, intervene directly with the Department of Education.

ACTION STEPS

1. Call your U.S. Senators’ offices, especially if you live in West Virginia, Florida, North Carolina, South Carolina, Ohio, Pennsylvania, or Texas. (Added by Kim, Call your reps nationwide — this impacts all of our kids.)

   • Ask to speak with a senior staffer in the state or district office.

   • Stress that this is not a budget issue. It is a policy choice that wipes out all federal braille training programs nationwide.

2. Frame your message with these points:

   • Braille is literacy. Without it, students and adults lose access to education, employment, and independence.

   • Eliminating these grants means there will be no national support for specialized braille training for Teachers of the Visually Impaired (TVIs) or Vocational Rehabilitation Therapists (VRTs).

   • This decision harms one of the most underserved disability groups, those with sensory impairments.

   • Some projects had a strong 6-year track record of success and impact.

   • The effect is national, not local, and every state benefits from the professionals trained in these programs.

3. Share this request with your networks.

There is so much vying for our attention these days, but we must protect our children’s futures. If your child is blind or visually impaired, I beg you to reach out to your senators and representatives.

WHO DO I CALL?

To find contact info for you representatives and senators, enter your address at: https://www.congress.gov/members

MORE ARTICLES about how the Trump administration’s anti-DEI policies are targeting sensory disabled students across the nation, including cuts to teacher training and DeafBlind programs:

ProPublica – https://www.propublica.org/article/trump-dei-students-education-deaf-blind-grant-funding

Quote from article: Lisa McConachie, of the Oregon DeafBlind Project, which serves 114 students in the state, said, the Trump administration’s view of DEI is different from how inclusion is thought of by disability advocates. “Our passion and our mission is around advocacy for inclusion for kids with disabilities,” she said. “Students in special education are often marginalized in their schools. Students in special education are often excluded.”

EdWeek – https://www.edweek.org/teaching-learning/trump-canceled-millions-for-special-education-teacher-training-whats-next/2025/09

Quote from article: One university professor who oversees a special education master’s program has had to tell interested students—many of whom are current educators—to hold off on enrolling because there’s no guarantee the federal Part D funding that helps cover their tuition will flow.

The professor, who spoke on the condition of anonymity out of concern for their grant continuation, worries wavering enrollment numbers will lead the university to de-prioritize the program.

Disability Scoop: https://www.disabilityscoop.com/2025/09/11/trump-administration-yanks-funds-from-dozens-of-special-education-programs/31622

Quote from article: Lee who is now co-director of policy and advocacy at the National Down Syndrome Congress said, “These cuts touch every corner of the special education system — parent centers, personnel development, doctoral training and teacher training,” she said, noting that some terminations affected organizations with decades of expertise. “Losing those resources doesn’t just hurt institutions, it directly hurts students with disabilities and the families who rely on them.”

OUR EXPERIENCE

I think this situation has triggered PTSD for me — bringing me right back into the trauma of the battle and mediation. Don’t let this happen to your student or any others. Call your reps.

The transition to college or a career can be overwhelming for students with vision loss, and therapy can offer vital support during this pivotal time. There are so many questions. Unsure when to apply for vocational rehabilitation services? Surprised to find the school district wants loaned accessibility equipment back? Scrambling to secure more orientation and mobility (O&M) training on short notice to travel independently on an unfamiliar campus? Struggling with self-advocacy as parents who previously took the lead in communicating with teachers step back? Therapy helps young adults process these challenges, build confidence, and develop the emotional resilience and practical skills needed for a more successful and empowered transition.

Adjusting to vision loss counseling is essential for individuals and families coping with blindness, low vision, or progressive vision loss. Beyond the physical challenges, vision loss can lead to grief, anxiety, depression, and a loss of independence. Licensed Professional Counselor (LPC) and Certified Rehabilitation Counselor (CRC) Janice Barrocas has dedicated her career to helping people navigate these challenges through her specialized counseling practice, Adjusting to Vision Loss.

Highlighting The Possibilities

Based in Atlanta, Georgia, Janice offers emotional support for vision loss that goes beyond traditional therapy. With a master’s degree in Clinical Rehabilitation Counseling from Mercer University and years of experience at the Georgia Vocational Rehabilitation Agency, she understands the unique barriers faced by individuals with blindness or low vision. In 2022, she founded AdjustingToVisionLoss.com as both a private counseling practice and a trusted educational resource for individuals and families.

At the heart of Janice’s work is a strength-based, solution-focused approach. She draws on a well-recognized seven-stage model of emotional adjustment to vision loss—beginning with trauma and denial, progressing through depression and reassessment, and ultimately reaching self-acceptance. Her methods include empowerment strategies, mindful self-compassion, and behavioral activation, all aimed at restoring confidence and independence for her clients.

An Information Hub For Blind & Low Vision

AdjustingToVisionLoss.com is also an information hub for the blind and low vision community. Its blog features articles on coping with vision loss, navigating frustration in healthcare systems, and reframing mistakes as opportunities for growth. Janice also highlights the importance of mental health services for people with blindness, emphasizing that emotional adjustment is as critical as learning mobility or adaptive skills.

Accessibility is a core value of Janice’s counseling practice. She ensures that all forms, sessions, and resources are fully accessible for clients with visual impairments. If intake paperwork isn’t accessible, she assists clients by reading forms aloud and guiding them through each step. Sessions are available both in-person and online, and the practice is in-network with most major insurance providers, including Medicare, UnitedHealthcare/Optum, Aetna, Cigna/Evernorth, Tricare, and Humana. She also offers a free 15-minute consultation for those considering therapy. Janice is licensed to practice in Georgia and Colorado.

In addition to her clinical work, Janice Barrocas is a founding member of the Task Force for Empowering Blind Independence, a nonprofit dedicated to catalyzing change and improving access to vision rehabilitation services for people living with blindness or low vision in Georgia.

Task Force For Empowering Blind Independence

For anyone facing the life-changing impact of vision loss, AdjustingToVisionLoss.com is a place to find help, hope, and expert guidance. Janice has found that with the right support, individuals can build confidence, independence, strengthen mental health, and embrace life with renewed purpose.

To learn more about vision loss counseling or to schedule a consultation, visit www.AdjustingToVisionLoss.com.

For a state by state list of mental health providers serving those with blindness or low vision, visit the Alma provider list. For a list of clinician led tele-support groups for parents, teens or young adults visit Lighthouse Guild of New York (people outside NY can register).

I’ve had the pleasure of contributing two video segments to their program. And I appreciate that they are committed to sharing a variety of perspectives on important topics.

The video below is me discussing the importance of allowing my blind son Kai to take risks. It’s titled, Kim Owens: The Dignity of Risk. It is part of a free course that parents can access by clicking here. If you take the free course, please also take the survey at the end. The data is important in supporting this work.

The next video is me sharing about our choice to send Kai to a local public school instead of the state’s school for the blind. It’s titled, Kim Owens: Public School Perspective. It is part of a free course that can be accessed by clicking here.

To check out more videos like these, visit the EMPOWER VI YouTube channel!

LEARN MORE ABOUT EMPOWER VI
At EMPOWER VI our goal is to support transition-aged students with visual impairment, especially those in rural communities, by providing the tools, resources, and community they need to succeed after high school.

Whether you’re a student, a family member or a professional, we offer free, virtual resources that help bridge the gap between high school and what comes next, including postsecondary education, employment, and independence.

What We Offer: Resources on Demand
Accessing quality transition resources should not depend on your zip code. That is why we have created an online hub full of accessible, self-paced online courses for blind and low vision youth, and those who support them.

For students, learn how to advocate for yourself, explore career options, or prepare for college, all at your own pace. For families, understand the transition process and get practical tips on how to support your child. For professionals, find tools and strategies to guide students through this critical life stage.

Check out our transition-focused resources and come back often, as we’re always adding new content.

Stay connected by signing up for our monthly newsletter. Each issue focuses on one key transition topic, with a simple breakdown of what it means and why it matters. At the end, we offer a hands-on way for students, families, and professionals to get active and apply what they’ve learned.

Get Involved: Programs and Opportunities
Our work goes beyond resources, as we’re building a community. Here are some ways to engage with us:

EMPOWER VI Mentoring Program
Each summer, we invite high school juniors and seniors who are blind or have low vision (from any U.S. state) to join our virtual Mentoring Program. Students are matched with Mentors who also have visual impairments and are further along in their postsecondary journeys. Together, they work on building skills, confidence, and a roadmap for the future, with the guidance
of our experienced EMPOWER VI staff.

Advisory Boards
We believe the best way to support students is to listen to their voices, and those of adults who have been there too. That is why we have both a Student Advisory Board and an Adult Advisory Board, made up of individuals with visual impairments. Want to help shape our work? Check our Advisory Boards page to learn about recruitment opportunities.

Communities of Practice
Communities of Practice (CoPs) bring together parents, guardians, and professionals. These virtual groups meet regularly to learn together, share experiences, and support one another. If you’re looking for connection and community around supporting transition-age youth with visual impairments, sign up for a CoP today.

Final Thoughts
At EMPOWER VI, we know that transition-age youth who are blind or have low vision have big dreams, and we are here to help them reach their goals. No matter where you live, you are not alone. Visit our website at empowervi.org to explore our resources, sign up for programs, and join our growing community.

ID: 2 adults with 2 young children on their backs.

Hi, It’s Kim and I’m thrilled to announce that I’ll be presenting at the upcoming Use Your Voice: Advocacy Strategies for Children’s Vision FREE webinar!

Join Prevent Blindness and the National Center for Children’s Vision and Eye Health on Wednesday, June 4, 2025, from 2:00 p.m. until 3:15 p.m. ET for a 75-minute webinar Use Your Voice: Advocacy Strategies for Children’s Vision. In this webinar, participants will gain a deeper understanding of the advocacy process; the value and impact that individual and community voices have on the advocacy process; and how to effectively advocate for public policies that govern health care, eye care, and school systems to ensure responsiveness to children’s vision health needs.

Register HERE

This webinar will explore the following topics:

• What is advocacy, and why is advocacy for programs, services, and public policy regarding children’s vision issues important?

• How to advocate for programs and services for children with vision impairment, rare diseases, or other disabilities.

• How parents of children with vision impairment can use their children’s experiences in their advocacy journeys.

• The Early Detection of Vision Impairments for Children Act (EDVI) of 2025 (HR 2527): How to advocate for passage of the first legislation to create a federal level program to support children’s vision health through grants to states and communities for systems improvement.

• Example of advocacy in the rare disease community with respect to the ORPHAN Cures Act.

The webinar will be moderated by Prevent Blindness staff Donna Fishman, Director, National Center for Children’s Vision and Eye Health and Sara Brown, Senior Director, Government Affairs.  

Presenters:

• Bridget Benard and Kim Owens- Graduates of the ASPECT program and parents of children with visual impairments

• Susan Hepworth- Executive Director, National Coalition for Infant Health 

• Nicole Pratt- PTI Co-Director, Training Program Director, Leaders Empowered as Advocates with Dignity (LEAD) Project Director, SPAN Parent Advocacy Network

• Shannon Rohn Deere- Director, Leavitt Partners

Certificates of Attendance will be available upon request.

Below you’ll find links to some related information including an essay I wrote about the Early Detection of Vision Impairments Act, a podcast episode where I shared a bit more of our family’s journey, and information about joining the ASPECT Patient Engagement Program. Please check out these resources and I look forward to seeing you on June 4th!

Essay: My 10-Year-Old Son Was Blind and No One Knew

Podcast: The Focus on Eye Health Podcast, Episode 2

ASPECT Patient Engagement Program: Learn More

One month shy of our 28th wedding anniversary (31 years together), Chris and I amicably parted ways. In 2009 I got sick with a serious autoimmune disease and I thought my life was, literally, over. Thankfully, I found a great rheumatologist who improved my quality of life but fatigue, malaise, and the ongoing cost of treatment took a huge toll on our relationship.

Then in 2012, when our youngest son Kai was ten, a retinal specialist diagnosed him with progressive sight loss. We were overwhelmed, grieving and ignorant of disability models (medical/social). Over time, we realized that the social model of disability felt right to us. We believed that the difficulties encountered were not because of my illness or Kai’s blindness, but because of the lack of accessibility and social support for disabled individuals. If you are new to all this, I highly recommend Emily Ladau’s book, Demystifying Disability.

We quickly found out that advocating for a blind child’s education is a challenge. Blindness is rare and certified teachers of the visually impaired are in short supply (and underpaid). Plus, school administrators don’t want to allocate their budgets to pay for braille or assistive technology for a single student. They’d prefer to use funds for something that multiple students will utilize. So, I used my extremely limited energy to hold our rural school district accountable to providing appropriate accommodations. (I fought like hell.)

My goal: To ensure that Kai had access to materials at the same time as his peers.

To be clear, there were other marital issues but the stress of my own disability and the complexities of disability parenting were major stressors. Thankfully, both my boys (Cash & Kai) are happy, independent adults now and I can focus on my own health, wellness, dreams, and goals.

So as an aspiring author I embraced Nora Ephron’s words, “Everything is copy” and publicly committed to unpacking the research about the 87% divorce rate between parents of disabled kids. I read primary research, personal essays, articles and listened to podcasts and then…

I froze.

The judge had just signed off on our divorce a month ago so it’s a fresh wound. Whenever I tried to synthesize what I had learned from my research and put it in to words on the page my brain scrambled. I’d stare at the screen for a while, then take my ‘best-est fur friend’ for a long walk. Below is his picture, because IMHO cute dogs reduce stress.

Eventually I decided to ask our community members for help. They shared the factors that caused stress in their marital relationships. These two quotes sum them all up nicely:  

“…really happy you are covering disability and divorce. So many people chalk it up to ‘well, disabled kids are such a burden it’s no wonder the marriage fell apart.’ We really need to have a conversation about how to better support parents and families.”  ~ @MarissaNiss

“…acceptance or lack thereof that extends to grandparents, aunts, uncles, etc., can also cause tensions and frustrations within a marriage.” ~ anonymous

Our followers named these factors:

• Differing coping styles

• Stress of being the primary caregiver

• Stress of being the only bread-winner

• One partner shutting down and not participating in parenting

• Denial of child’s blindness

• Partner turning to drugs or alcohol

• Lack of local services

• Guilt (for passing on a genetic disease)

• Internalized ableism

• Lack of effective communication

• Lack of time together

• Lack of family support

• Lack of community support

• Finances

• Loneliness (no longer relating to friends/family)

• Exhaustion

• Demands of educational advocacy

• Demands of medical advocacy

• Political climate

• Limited time off work

• Disagreements about integrating tools/learning blindness skills

Relatable, right?!

Also, there’s been a conversation on our Facebook page in which several people shared their disability related marital challenges and successes. You can find that post by clicking here.

So, time passed, and the community contributed, and finally, I was able to do the work. What I found is frankly UNBELIEVABLE!

The statistic that I posted in my first Instagram post on this topic, the stat that Google served up, the stat that was published in Psychology Today (and many other outlets), the statistic that everyone bellows from the freaking rooftops is FALSE!

There is no primary research that supports the much touted and discouraging 87% divorce rate between parents of disabled kids.

None.

Zilch.

Nada.

In fact, there’s very little research on this topic and what exists comes from relatively small population samples and is contradictory. Here’s a sample:

1. Kennedy Krieger Institute Study on Autism and Divorce

The researchers found that 64% of children with an autism spectrum disorder (ASD) had married parents, compared to 65% of children without ASD. This indicates that having a child with autism does not significantly affect the likelihood of parental divorce.

2. University of Wisconsin Study on Developmental Disabilities and Family Size

The researchers found that among couples with children without disabilities, the risk of divorce increased with each additional child. In contrast, for parents of children with developmental disabilities, the risk of divorce remained unchanged regardless of family size.

3. Vanderbilt University Study on Down Syndrome

The researchers found that families raising a child with Down syndrome had a divorce rate of 7.6%, which was lower than the 10.8% rate among families with non-disabled children and the 11.25% rate among families with children with other birth defects.

4. Study on Autism Spectrum Disorder and Divorce Timing

The researchers found that 23.5% of parents of children with ASD experienced divorce, compared to 13.8% in the comparison group. The divorce rate among parents of children with ASD remained high throughout the child’s adolescence and early adulthood, whereas it decreased after the child’s early years in the comparison group.

“Who cares about the numbers? My relationship is stressed to the MAX!”

If you feel this way, I encourage you to listen to ‘The Rare Life Podcast’ episode 156 titled, Should I get a divorce? Insight and Solidarity from Divorced Medically Complex Parents with host Madeline Cheney and guest therapist Amanda Griffith-Atkins. Click here to listen. I found their coverage of this topic to be heartfelt, nuanced, and validating.

The good news is that many couples have found ways to overcome these issues through honest communication, therapy, and/or community and familial support. (Obviously, both partners need to do the work of reconciliation.) Whether you are committed to working things out or have made the decision to separate, I hope it helps to know that:

The odds are not against you.

You are not alone.

Your feelings are valid and the issues are hard and real.

If you need a bit more support to create a relationship that feeds your soul or to accept the fact that it’s time to part ways, check out this article in The Divorce Magazine featuring Brene Brown talking about vulnerability and toxic shame.

Or consider what follower Sally Jane Smith shared on our Instagram page:

“A friend of mine recently said something to me after his second divorce. He said he didn’t have two failed marriages – he had two successful partnerships. One had lasted more than a decade, the other more than two. Each had brought beautiful children into the world, and ended (more-or-less) amicably. Without negating the pain of a divorce, I thought this was a lovely, alternative way of thinking about it.”

Please join the conversation by sharing your thoughts in the comments section below or on our social media pages. And, if you need support, please check out our resources page.

I’ll end this series by saying, I’m at peace with my decision to divorce and I’m feeling hopeful about the next phase of my life.

I wish you the absolute best.

Why is this important? Well…

My 10-Year-Old Son Was Blind and No One Knew!

In first grade, I noticed that my son kept pushing on his eyes and pulling at the lateral corners. Eventually, the area around his eyes became bruised. The doctor said it was allergies and prescribed over-the-counter medicine, but it got worse. Click here to read my full essay about the EDVI Act.

Want to know more? You’re in luck! I recently had the opportunity to chat with Julie Grutzmacher, Director of Patient Advocacy and Population Health Initiatives at Prevent Blindness. In our discussion, we talked more about EDVI and I shared a list of questions I wished I had asked Kai’s first eye doctor. Check out Episode 2 of the Focus on Eye Health podcast hosted by advocate Christopher Hord. Click here to listen.

Would you like to support the EDVI legislation? Click here to learn how you can help because your voice matters! And if you’d like to start using your experience and voice for change, please check out the the ASPECT Patient Engagement Program. I learned how to confidently and succinctly share my family’s story to a wide-range of audiences. I had years of experience mentoring other families, and the IEP process gave me plenty (read: more than enough!) opportunities to advocate for my son’s accommodations, but ASPECT gave me the tools to push for change on a state and national level. I highly recommend this program to anyone who wants to tap into a powerful community of change-makers and flex their advocacy muscles.

Do you want to become a stronger blindness advocate? If so, click here to learn more and apply. Be sure to tell them Kim Owens sent you!

In simple terms, the program allows service dog handlers to self-identify that they will be traveling with a legitimate service dog. This information will be provided to the driver along with reminders about ADA law and Uber’s service dog policies. Note: Emotional support animals do not qualify and must use Uber pet.

Upon hearing about this new program, Kai’s first question was, “When will the drivers be notified? Because if it’s before they accept the ride, I’ll be waiting much longer.”  

Uber’s communications did not explicitly state the answer, so I investigated by going through the process myself.

Uber’s site outlines the following steps to self-ID (source Uber Newsroom)

1. Tap Account / Settings

2. Tap Accessibility and select Service Animal

3. Tap Complete Eligibility Form

4. Complete the eligibility form

5. Select “I will ride with my service animal”

6. Choose whether you want drivers to be notified of this information. You can change this setting or opt-out of self-identification at any time.

When I got to the eligibility form the first question read: Is your animal required because of a disability? Yes or No (Again, it states that emotional support animals to not qualify.)

If you click Yes, a box opens asking, “What work or tasks has your animal been trained…” The examples given include guide dog, hearing dog, seizure alert dog. I entered guide dog.

The next screen has a toggle button “I will ride with my service animal.” This button was automatically toggled on.

The next section stated, I want drivers to know I will ride with my service animal when: Drivers arrive to pick me up – or – I don’t want drivers to know.

Then there are links provided to visit Uber’s service animal policy and community guidelines (I will provide the links at the end of this post).

Once complete there is an option to completely delete the info you entered, which I did.

According to the process outlined, Uber will notify drivers that you are traveling with a service dog when they arrive to pick you up (or not at all if that’s what you specify). And, if a driver attempts to cancel your ride, they will receive a popup reminder that it is illegal to do so. If the driver goes through with the cancellation, the rider will receive a pop up asking them to report what happened. This is a streamlined reporting system.

I hope this overview helps you feel more confident with the process. I also hope that the process is a success. Kai is going to try it and will report back. He’d stopped using Uber all together because of the number of denials he experienced when traveling with his guide dog, Pride.

If you try the new Uber self-reporting process please drop your experiences in the comments section.

Also, if you want to read more, I’ve placed some helpful links below.

Click here to read the Uber News report about this new process.

Click here to read Uber’s community guidelines.

Click here to read Uber’s service animal policy.

Click here to access a previous post we did about Uber denials

Three years ago, the Young Visionaries began a mission to educate our community about life as white cane users. What started as a simple walk down Main Street in Grand Junction, Colorado, has blossomed into an inspiring movement of awareness and change. Yesterday, we celebrated that journey with our White Cane Day 2024 event—and what a day it was!

Under the dedicated leadership of Joanne Stamp, Rob Harris, and Erin Allard, this year’s event was a resounding success. Their tireless efforts, along with our amazing volunteers and community partners, made the day exceed all expectations. Together, we hosted a vibrant resource fair featuring more than 15 local organizations. The Center for Independence graciously provided the perfect venue, welcoming over 70 attendees eager to learn and connect.

The heart of the event was our “White Cane Down Main” walk. More than 40 participants, all donned in bright yellow shirts, proudly strolled down Main Street, spreading awareness and sharing their stories. Leading the way was our keynote speaker, Penn Street, affectionately known as “The Blind Chick,” who energized everyone with her passionate address. She shared invaluable resources from Aftersight and the Lions Club’s Long White Cane program, empowering all in attendance.

Adding to the day’s significance, Grand Junction’s own Mayor Abram Herman issued a proclamation reaffirming the city’s commitment to our cause. Local vendors like the Ensight Skill Center, Rocky Mountain Health Plans, and Camp Abilities Colorado contributed their expertise, turning the fair into a one-stop resource hub.

We were also honored to have GJPD Officer RJ Eaton join our walk. His presence highlighted the importance of accessibility for all and led to real-time improvements for participants.

Thanks to our media partners—KREX, The Daily Sentinel, and Joanne’s guest appearance on “Food for Thought” with Dixie Burmeister—we reached an even broader audience. This coverage ensures that the message of White Cane Day continues to resonate far beyond the event.

As we reflect on this year’s incredible celebration, we’re already looking ahead to next year. With exciting new plans in the works, we hope you’ll join us in 2025 for an even bigger and more impactful White Cane Day!

Kai Owens (Instagram)

Our very own Kai Owens who lost his sight at the age of ten to ABCA4 retinopathy and autoimmune retinopathy shared a short video of himself skimboarding at our local beach. For him, watersports relieves anxiety and helps him feel included with a great group of ‘beach’ friends he grew up with. (You can watch him skim by clicking here.)

Kai also shared three videos of himself from a brothers’ trip to the Oregon Coast. In one video, he is seen crossing a stream on a large fallen log by navigating with his white cane. (Click here to watch.) In another video, he’s carefully navigating across a beach filled with boulders. (Click here to watch.) In the last video, Cash and Kai are at the summit of God’s Thumb formation. When we asked if it was scary Kai said, “Yes, but the fresh air, elevation changes, sounds of the wind and waves, and being with Cash was great! I crushed it!” (Click here to watch.)

Early on our family discovered that brothers’ trips were a great way for the boys to bond while doing activities they love. Their first brothers’ trip was to Erik Weihenmayer’s NYC Summit! Speaking of Erik, we featured him, too!

Erik Weihenmayer (Instagram)

Erik Weihenmayer’s blindness was caused by juvenile retinoschisis, which affected his vision from birth and eventually caused him to go completely blind by his early teens.

With his friends and family’s encouragement and support, especially his late father Ed, Erik has made a point to live a beautifully adventurous life. He wrestled competitively through high school, graduated from college, taught middle school through his 20s, and eventually made the bold choice to carve a passionate path forward for himself in the mountains – changing many people’s perceptions of disabilities, by making possible what was considered impossible.

Today, Erik is one of the most accomplished athletes and speakers in the world, as well as the co-founder of No Barriers USA his proudest achievement No Barriers is a Colorado-based nonprofit that provides outdoor programming for kids, adults, and Veterans with seen and unseen challenges, as well as supports caregivers and others from underserved and underrepresented groups. (Click here to visit their website)

Erik’s advice for parents of blind and low-vision children, as well as for the kids themselves, is to build up their “rope teams” – the folks in life who can help you achieve your vision. Erik credits his family and friends as being core to the confidence and the accomplishments he has built and experienced in his life, and so he urges everyone of every ability to lean into their teams to overcome their barriers.

Erik’s teams helped him become the first blind person in history to climb Mount Everest, complete the Seven Summits, kayak all 277 miles of the Colorado River through the Grand Canyon, and ascend Patagonia’s Torres del Paine, to name a few. They have also helped him share his story, and the stories of others, worldwide through thoughtful keynotes, best-selling books, popular podcasts, award-winning documentaries (Click here to access Vimeo’s website and Erik’s documentary film From My Window), and of course, the No Barriers USA framework.

Going it alone is not an option for Erik. Roping Up to dream, achieve, and celebrate together is the way forward. So, find your people and Keep Climbing!

Idojax Surf Charities (Instagram)

We also heard from Indojax Surf Charities. A wonderful program led by Jack Viorel of Indojax Surf School in Wrightsville Beach, NC. Our boys Cash (sighted) and Kai (blind) participated in their program a few years ago and had an incredible time. They both learned to surf during the camp and continue to enjoy the sport. The instructors had a lot of experience teaching kids with a wide range of disabilities and visual impairments and the parents had time to enjoy the beach and get to know one another. In the video we shared, one participant’s grandmother stated, “He believes in himself and that’s what’s important and that’s what he’s learned by coming out here to Indojax.” (You can watch the video by clicking here.)

Millie Sica (Instagram)

Millie was diagnosed with optic pathway glioma at the age of three. She shared her love for ballroom dancing. She says, “Dance is such a great sport — both mentally and physically. It helps build both endurance and muscle strength. It’s a confidence builder and reminds me that I can do anything!” (Click here to watch her perform a Latin dance with her instructor.)

Joe Rinaldi (Instagram)

Joe of Project Endure has Best’s Disease. He shared his love of fitness and how he helps others to find strength in struggle through coaching, community, and conversations. He shared his favorite quote by Christine Caine, “Sometimes when you’re in a dark place you think you’ve been buried but you’ve actually been planted.” (Click here to see his feature.)

Jared Maynard (Instagram)

Jared who is progressively losing his sight to Choroideremia (CHM) shared how a year ago he nearly died from a rare and deadly disease called HLH. He ended up on life support for five weeks and lost 40 pounds of muscle weight. Ultimately, he spent three and a half months in the hospital where he had to learn to eat, speak, walk, and breathe on his own again. One year later, he returned to powerlifting hitting lifetime personal records. Now he helps other people overcome barriers and discover their true power. (Click here to see his feature.)

Ellashae (Instagram)

Ellashae is a college student who lost her sight in 2020. She has developed a passion for goalball. The sport has given her a community and a purpose. She hopes to represent the USA at the next Paralympics. (Click here to see her feature.)

Isaac McBurney (Instagram)

Isaac is legally blind from retinopathy of prematurity (ROP). He recently kayaked the MR340 which is a 340-mile river race down the Missouri River. He wants others to know that blind and low-vision kids can do anything! He says, “I didn’t know that I could kayak, go hiking, or rock climbing as a blind person, but figured out that I can with encouragement and guidance, and that it’s actually pretty fun.” (Click here to see his feature.)

Benn Murray (Instagram)

Benn has progressive sight loss from Retinitis Pigmentosa (RP) and competed in Brazilian Jiu-Jitsu. He said, “My message to parents would be to get their kids involved in any kind of sport. The confidence and relationships it builds are incredible, and the benefits of exercise speak for themselves. There is no such thing as can’t!” (Click here for his feature.)

Raquel Alim (Instagram)

Raquel is progressively losing her sight to Retinitis Pigmentosa (RP) and she shared a video of herself waterskiing! She says, “Being out on the water gives me a profound sense of freedom and exhilaration. It’s a safe and supportive environment, and I highly recommend it. Don’t let fear hold you back – embrace new challenges and find your own sense of freedom!” (Click here for her video.)

Terri Rupp (Instagram)

Terri has Retinitis Pigmentosa (RP) and shared her love of running saying, “Running to me is a place where I can just be, where I find joy, clarity, and cleanse my head of all the busyness that screams for my attention. Running for me is also a place of community. Because I’m a blind runner, I get to run with a guide. This means the miles fly by while we run talking about everything and nothing.” She has passed her love of running to her children, too! (Click here for her feature.)

Ashton Dunford (Instagram)

Ashton is a blind middle school student who shared his love of running. We featured his recent track meet in which he and his guide ran a 1600-meter race followed by a 400-meter race. His mom, Hilda, said, “He wasn’t the fastest runner but he finished and didn’t give up! I’m so proud of him and can’t wait for all the track meets this season.” (Click here to watch the video.)

Hilda and I co-wrote a blog post several years ago that featured our favorite ways to keep our blind kids active. (Click here to read that post.)

Tony Taliani (Instagram)

Tony has Retinitis Pigmentosa (RP) and competes in powerlifting and strongman competitions. He loves imparting his passion for sports to his 18-month-old son, Luke. (Click here for his feature.)

Owen Cravens (Instagram)

Owen is a college student with Stargardt’s disease and will be representing Team USA in the 2024 Paralympics in Paris. Owen says he’s always willing to meet and talk with blind athletes and their families to help mentor them through the process of living and learning through their various eye conditions. (Click here for his feature.)

Yahya Pandor (Instagram)

Yahya is a blind runner with macular degeneration and is creating the world record of being the first fully blind person to run a marathon untethered. He shares, “For all the young people out there, being active helps your body stay strong, your mind stay sharp and it’s a lot of fun too.” For the parents out there he says, “Encouraging your kids to be active helps them build confidence and independence. Plus, it’s a great way to bond and enjoy time together.” (Click here for his feature.)

Paul Buono (Instagram)

Paul is fully sighted but we featured him because we are beginning to integrate more autoimmune content into our page. Paul was diagnosed with Lupus at the age of 28. Illness has caused a shift in his athletic focus. He’s no longer on the CrossFit Games podium, instead, he’s staying active by lifting weights, snowboarding, hiking, climbing, swimming, and riding his bike. Now he helps others to overcome health challenges, lose fat, and build muscle. (Click here for his feature.)

Tell us about you!

If you are a disabled athlete, please tell us a bit about yourself in the comments. We’d love to know how staying active has helped you to overcome adversity.

If you are a parent of a blind child, please share your wins or struggles with letting your child participate in sports and athletic adventures.

Thanks!

At this appointment, she was gruff to say the least as I am sure she was mad that I pulled strings to be seen by her. She told me that I would eventually have cancer due to my autoimmune conditions to which I responded “but the question is do I have it now?” She finally looked at my imaging and stated I needed surgery immediately. She referred me to a local cardiothoracic surgeon. To spare some details, I ended up canceling my surgery with this surgeon as I was not comfortable with him (there are only about 100 of these surgeries per year in the US) and received a referral to Mayo Clinic to their thymoma group who scheduled the surgery for a few weeks later.

Luckily, the lung lesions were not cancer and were actually due to my liver migrating up through three diaphragm perforations. Hence during the surgery, they reconstructed my diaphragm and removed my thymus from my heart, aorta, and lungs. There was significant hope from my doctors that the removal of the tumor would halt the progression of my vision loss. Of note, thymomas are notorious for causing another paraneoplastic disorder and removal is often curative. Unfortunately, my vision loss significantly worsened post surgery then eventually a few months later returned to a more similar progression to prior to surgery.

Post-surgery, I started on a series of immunosuppressants. Obviously, being immunocompromised during a global pandemic was not optimal. Currently, I am on my fourth immunosuppressant due to intolerance. Personally, I have experienced profound peripheral neuropathy, vomited more times than I can count, developed high intraocular pressure, was hospitalized with sepsis, and visited the ER with COVID due to the immunosuppressants. Ultimately, I decided I wanted to enjoy life and was willing to accept some vision loss. Currently, I am on an immunosuppressant for my other autoimmune conditions with hopes it will help my eyes. To that end, it seems to be helping as I have slower progression than when I am off immunosuppressants.

Due to very little evidence of retinal damage on eye scans, there was still a question if I received the right diagnosis. Earlier this year, my retinologist referred me to the University of Iowa which ended up being the best appointment thus far in this journey. This retinologist reviewed my records, performed a number of tests, and ultimately, used artificial intelligence (AI) to read my optical coherence tomography (OCT) scan. The OCT scan showed damage to a specific layer of the retina which is often found in AIR. Due to the nonspecific nature of the AIR diagnosis, this was the most objective evidence thus far regarding the cause of my vision loss. This retinologist believes my vision loss is due to some combination of AIR coupled with subtle genetic alterations (I also carry 3 retinitis pigmentosa genes with unknown significance) leading to my vision loss. Additionally, they took skin cells and blood for an eventual study and described how my AIR presentation was similar to some they had in a previous study. As weird as it may sound, I finally felt like I was being taken seriously and they had at least some answers on what was happening.
This is a condensed version of the last four years since my initial AIR diagnosis which the diagnosis was subsequently questioned at every appointment thereafter. This condition does not have specific diagnostic criteria and the presentation of AIR varies significantly between individuals. For many of us with AIR, we struggle with our doctors understanding this condition especially if retinal structure does not equate the retinal function and diagnosis is often a long, convoluted process. Thus, I would like to share a few things I have learned along the way that may be helpful to someone else.

If you are uncomfortable with a physician you are seeing, feel empowered to get second opinions. AIR is a poorly understood condition and having support from your physician(s) makes a world of difference. I feel fortunate to have a team that I now trust despite multiple times that I unofficially fired physicians.
It is okay to grieve your vision loss and secondary losses like driving. These are ambiguous losses and things that most of us never thought would occur. It shifts our view of what we expected and how we envisioned our future. Consider attending peer support groups on vision loss to normalize your experience or even individual therapy to work through intense emotions around vision loss. There is no playbook on how to lose your vision but finding others who understand the struggle can help you process what is happening.

Balancing the side effects of immunosuppressants with the desire to stop the progression of vision loss is a hard decision and so personal to each one of us with AIR. Without a standard primary treatment for AIR, there is no correct answer on what is best for treatment. If you are debating what is right for you, self-reflect what your priorities are and use that as a guide to what will meet your needs best. Regardless of what you choose, give yourself grace and self-compassion as there will be days that you question your decision.
Advocate for changes at a local and national level to improve non-visual accessibility. The fear of going blind is augmented by how inaccessible our daily environment is. In most situations, government decisions overlook the impact on those with disabilities including those who are blind. Involvement and education on how the legislation or decision impacts our community can make a world of difference.

Find connections within your local or even extended community. I have attended blind retreats (thanks Daring Sisters!), visited a guide dog school, finished a blind leadership program, attended multiple blind conventions, and am involved in local blind non-profits. All of these experiences expanded how I viewed blindness and opened more possibilities for the future. Additionally, it gave me a community to lean on when times are tough and an opportunity to be that strength when others are going through a tough time. We are all more resilient than we believe.

Bothersome floaters that grew exponentially within a short time frame prompted me for an annual visit to the eye doctor. While my provider reviewed that floaters can be a natural process of aging, her tone changed to concern when my visual field returned with significant blind spots. A negative MRI and uncertainty of next steps led to a referral to Wills Eye in Philadelphia. Initially, I was diagnosed with pars planitis, an inflammatory condition for which I was prescribed steroidal eye drops. Regular monitoring had revealed favorable exams – however, my symptoms were not improving but rather accelerating to include afterimages and strange flashes of color. Infuriatingly, I was told that the stress of graduate school in conjunction with baseline anxiety was the likely cause of such visual disturbances. Feeling unheard and my intuition pushing me to continue to advocate for myself, I consulted with a neuro-ophthalmologist at Wills Eye. Ultimately, he escalated my case and led me to a retinal specialist who formerly diagnosed me with AIR. While I was thrilled to have my concerns considered, this was certainly not the diagnosis I wanted to receive. A rare condition with no cure or consensus on treatment, it was quite the opposite of what I was looking for. After a consult with Dr. Foster at MERSI, a further lab workup was positive for three anti-retinal antibodies and two anti-optic nerve antibodies, further conclusive evidence in conjunction with my prior diagnostic tests and symptoms. I was in denial, but three unanimous opinions and a negative genetic workup later – indeed the culprit was found.

I started on a regimen of oral immunosuppressants, Cellcept and Tacrolimus, which kept my vision stabilized for about 15 months. I am fortunate that I continued to push for answers, as sadly many go misdiagnosed for much longer and alas, no treatment will regain the sight that has been lost. Upon receiving my graduate degree, I moved to Colorado and transferred my care to UCHealth. Unfortunately, months after my move I struggled with a few bouts of strep throat and subsequently sepsis, likely a result of my immunosuppression. This was the catalyst for further visual decline and warranted adjunctive treatment to my current regimen – infusions. My body battled through Rituxan infusions with limited tolerance and no further benefit as my peripheral vision continued to wither – next plan. STK and Xipere steroid injections were performed with little to no improvement. These follow-up visits with my doctor were taxing and elicited significant unease as there is no standardized treatment for AIR. Truly it feels like trial and error mixed with a lot of hope. IVIG was that last hope. After an exhausting battle with insurance, I was finally able to start IVIG infusions about 4 months ago. I am thrilled to be able to say that as of my diagnostic testing last month, I am nearly stabilized – the word that all of us with AIR are hoping to hear.

While I never expected to have been dealt such an emotionally and physically challenging diagnosis, I feel fortunate that thus far my life has remained rather unaltered. Nearly one year ago, I lost my ability to drive as I am now legally blind, qualified by my visual field being less than 20 degrees. The blessing is my central vision has remained strong at 20/30 and I am otherwise able to live a rather independent life. Due to the degeneration of rods, the photoreceptors responsible for night vision, I have a significantly harder time navigating in the dark and therefore am less comfortable alone. Throughout my journey, I have concluded that stress certainly plays a role in the trajectory of this diagnosis and it is essential to positively nurture your mind, body, and soul. The uncertainty of what the future holds for my vision is inevitably accompanied by fear, anger, and sorrow. However, I think it is important to constantly remind yourself of what you can and are able to continue to see and/or do in the present. Thankfully, I recently made the transition to work as a fully remote telemedicine PA-C which alleviates any work commute. As I was always taught, “prepare for the worst but hope for the best” – my future plans are to delve into the technological advances that are available to help make the possible future of further visual loss seem less daunting. I absolutely cannot omit credit to my incredible friends and family who have been pivotal in supporting me along the way.

This diagnosis has brought me wisdom amongst tragedy – nothing in life is mundane, advocate for yourself, laugh even in the hardest of times, and grief is not easy. I have learned mental fortitude that I never knew I had and for that I am truly grateful. While this was not what I pictured for my life, it has favorably shaped me into who I am today and I feel I am better for it. Lessons are still to come; some may not be quite as easy but the two that triumph all – one must never give up hope and take nothing for granted! Being in medicine, I remain optimistic that a cure for visual impairment will be in our near future!

Last week on Instagram we asked the following question: What is the hardest challenge you’ve faced as the parent of a blind or visually impaired child?

The responses were plentiful + eerily similar + fell into three categories: Acceptance, Community & Accessible Education.

Below are the responses from our followers* + some resources that may help.

Acceptance

• The emotional aspects of sight loss that occurred in his early 20s. The grief and loss and heartache. The anxiety and depression. Sadness.

• Getting a diagnosis.

• Acceptance for sure. Currently, our biggest challenge is sleep which I think is a unique struggle for those with totally blind children.

• I realized that no one else was going to come to fix the broken system(s) for me, and I would have to face our giants. So, we are.

• Grieving the loss of eye-to-eye connection with my son was extremely hard. I miss being able to look my son in his eyes and for him to know just how much I love him by the way I look at him. However, challenging this has been, it has helped me grow tremendously as a person, and in ways I’m so grateful for! I can and will continue to do the hard things and so will my son!

• The eventual diagnosis was incredibly difficult to accept. Once we got past that and realized that it was up to us to empower our child – now 17 – and make sure he had the tools to move forward in life and get the most out of it, we realized that his limitations were those imposed by others. From then on, we looked at our son’s journey from a different perspective.

• For me, it’s just letting him be a boy who wants to run, explore, and have fun. Mom has to step back and not hover, to let him have a bump on the head or trip over a log (within reason) to allow him all the room to explore and learn about the environment. It’s hard and Dad is much better at not hovering so sometimes I just have to turn around and drop the bubble wrap!

Community

• Finding fun activities for her to do.

• Security, security, security. We live in a dangerous city and there is no possibility we will allow her to go out alone. She feels she needs to be independent but it’s not possible in our city.

• Watching his cousins run around playing together knowing he isn’t included in that.

• Being a parent of a blind child has very different challenges for each stage of growth. My biggest challenge in this stage is trusting all the new people he encounters to treat him fairly, kindly, to offer assistance if required, and to offer friendship which is always needed. Loneliness is always an issue until he befriends a few people. We always anxiously wait for the news that that has eventually happened!

• Making sure my child is included in activities and helping other people understand that my child can do pretty much the same things as their kids.

• There are always people who will be difficult and challenges that seem insurmountable, but on the other hand, there are a lot of resources available.

• From watching kids like Kai (Navigating Blindness), and many others on IG, I feel like it’s possible to get past the tough stuff. It’s not always a straight line.

• When she was younger it was easier for her to make friends. Now it seems her only friends are on social media from all over the world. It’s been very different this first year of college because most of the students do not include her because of her limitations.

Accessible Education

• Fighting for services, pretty much everything our children will need!

• Fighting for services!

• Fighting for (quality) services, low expectations, pity (the absolute worst part), and just the general disinterest in making things accessible – even though a small effort would make all the difference (and be very appreciated).

• Fighting for services.

• Low expectations!!!

• When we started looking at options for mainstream high school, the special needs rep at one school we visited started tsking and seeing problems with how our son was going to navigate his way around the school. At that point, we realized that school was not the right one for our son. We did find a school with an incredible team of people who made it possible for our son to be included and educated.

• The balance between making sure people allow her independence/ do not hold her back, while also making sure they understand how significant her disability is and that she does in fact need the accommodations/ services/ safety/ etc. that she is entitled to.

• As of now, at 4 years old, we’re fighting with the school to obtain on-site vision therapy (not virtual).

• Aside from getting a diagnosis, the hardest thing was getting braille and tactile graphics for high school math & science courses. We kept fighting and ultimately went to mediation — and got it!

• Being a strong advocate has been extremely hard for me. I’m the type of person who would rather just be quiet and not ask questions, and get through life without drawing attention to myself. But very early on in this journey, I realized that, for my son, I would need to use my voice A LOT! That I was going to stand out, that I would have to ask the hard questions over and over and over again, and that whatever the team members (IEP & Doctors) thought about me didn’t matter, that almost every day I would have to interact with a team of people that may have some pretty strong opinions about me because I make their jobs harder.

• Getting an appropriate education.

• I was the first Blind/Visually impaired to graduate from the high school I attended.

Any surprises here? No.

Our family has ‘been there done that’ and so have many other families and blind adults. Thankfully, many of us are willing to extend a hand to help.

Parent Support Groups

Parents need support to understand and accept their children’s diagnoses. Since childhood blindness is a low-incidence disability it’s often difficult to find local support. Thankfully, there are many virtual support options available. I’d recommend you tap into the following free or low-cost virtual support group resources. The bullets below list the best way to contact the resource:

• APH Parent Connect Support Call (Call 800-232-5463)

• Partners for Pediatric Vision Virtual Support Group (email: DianeLChristian@gmail.com)

• Power of the Moms Virtual Retreats (email: becky.LCMHC@gmail.com)

• Thriving Blind Academy

Resources for inclusion and building community

Parents need schools, local community organizations, friends, family, and neighbors to include their children in sports, events, and gatherings. I’d encourage parents to seek out camps for kids who are blind and low vision. These camps and events helped my son, Kai, to meet peers, build independence, and confidence. In addition to peer support, I’d also recommend that parents seek out mentors for themselves and their children. Preferably, connect with a mentor who is a little bit ahead of you on the journey and who has similar interests such as music, sports, etc.

• Hilda Dunford of @OurBlindSide and I collaborated on a post listing our favorite camps and ways to keep our blind kids involved and active. You can visit the post by clicking here.

Resources for understanding your child’s educational rights

Lastly, did you notice how many times the word ‘fight’ was mentioned? Eight!

Fighting is exhausting. Parents need support, and thankfully, there are advocates and educational resources available to help. However, the cost of help often keeps parents from requesting support. Below is a list of my favorite free educational resources that address everything from understanding your child’s educational rights, to Individual Educational Plans vs. 504 Plans (hint: our kids need an IEP), and transition services. Click on the links below to go to their websites.

• Blind Early Services (Serves children birth to 5 in TN but information is helpful for families nationwide)

• Wrights Law (All ages)

• NFB’s National Organization of Parents of Blind Kids (All ages)

• AFB’s Family Connect  (All ages)

• Perkins School for the Blind (All ages)

• Bridges Help Desk (Support for children transitioning from high school to college or career. Services MD but information is helpful for families nationwide)

• Lighthouse for the Blind (Search for your state. Serves adults and offers some programs for kids.)

• Navigating Blindness discusses educational access and mediation

If you are a mentor, advocate, or resource provider who provides free or sliding-scale assistance to families of blind/low vision children, please drop your information in the comments. We’d love to connect.

We are stronger when Navigating Blindness together.

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About this collaboration

Navigating Blindness is run by Kim Owens (Mom) and Kai (Blind college student). Together, they create content to support parents of blind children. Instagram @NavigatingBlindess

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Our Blind World.
One Question at a time.
Community Outreach.
Facilitated by your Legally Blind Host, Chris Webb.
Instagram @OurBlindWorld

Kai and his guide dog Pride have hit their stride together as a working team and Kai loves the companionship. He says that other students saw his cane as a barrier to conversation but Pride is a conversation magnet and his social life is going strong. He has recently taken over as leader of a jazz consortium in Athens, Georgia called Swing Theory. A group of local jazz performers who get together to jam and gig at local venues. You can read more about it by clicking here.

Kai and Pride live with two roommates just off campus. They can easily walk to campus and then use the university’s transit system to get to class. If the weather is terrible or he needs to be someplace early, the university sends a paratransit van to assist. He’s still encountering some unfortunate discriminatory issues with rideshare (you can read more about that here) but otherwise no complaints.

Our oldest son Cash and his girlfriend, Sydney, are geologists working in Guyana, South America. In their time off they are exploring the globe. In the past year they visited Thailand, Big Bend National Park in Texas, Washington, Colorado, St. John’s Canada, and Costa Rica. Next, they are headed on a trek in Nepal. I love that they have jobs that allow them to travel extensively.

Chris is still busy teaching high school and is three years from retiring. Unfortunately, he suffered a stroke in November which was very scary. While hospitalized they found that he had a congenital hole in his heart that they believe was the cause. He had a procedure to close the hole and he’s gaining strength each day. He hopes to return to work this spring.

As for me, I wrote a book! The working title is BLUR and it’s a memoir about our family’s experience navigating chronic illness and blindness in rural Georgia. I was fortunate to sign with a literary agent who is seeking a publishing partner. I hope to have good news about that soon. If you are interested in knowing more about the book please click here and sign up to receive updates. My goal is to publish in paperback, Kindle, audio, and braille.

Thanks for all of your support! You can find the most current updates on our Instagram page and our blog’s features page. You may reach us by completing the contact form.

Take good care and keep in touch, Kim