Kaleidoscope: The Cortical Visual Impairment Podcast

Barbara Lopez Avila has a PhD in developmental psychology. But she says she still feels ill-prepared to help her son Logan navigate life with cortical visual impairment (CVI). So, she’s taken an active role in assembling and collaborating with a team of educational and medical providers. We talk about finding our CVI tribe to accompany us on the journey…

Grace (8) is a vibrant second grader with lots to say. She describes what it’s like to live with cortical visual impairment – the things that upset her and the special characteristics she relies on day-to-day. She says, “I’m not afraid to speak up.” And so she does.

Cheyanne Marcy has been an advocate on big stages, on everyday social media platforms and in day-to-day life on behalf of her son, Archer (5). She values action and advocacy – and has navigated not one, not two, but three state education systems. We sit down to talk about overcoming the fear of speaking up, vital services and resources for kids with CVI and NeuroMovement.

Mia Carella of thismomwithablog.com shares wisdom from the head and the heart, which comes from navigating life as a CVI mom / heart mom. (Her daughter Evalyn, 8, has cortical visual impairment and a congenital heart defect.) Mia describes the ups and downs of being a special needs parent and why we should let go of the Super Mom ideal.

Tommy Szalapski – Google accessibility engineer and CVI dad – has created a new app for CVI literacy. The Roman Word Bubbling project automates the tedious process of adding color outlining to letters, numbers and words, based on Dr. Christine Roman’s CVI literacy research and methodology.

Rosalie (1.5) has hydrocephalus, a build-up of fluid in the cavities deep within the brain, which comes with the risk of vision problems. After Rosalie's cortical visual impairment (CVI) diagnosis, mom Stephanie Kung quickly learned how to implement CVI-friendly routines and started a blog called Everyday CVI. She talks about Rosalie’s tremendous progress, how to advocate for CVI-appropriate early intervention services and that moment when you realize you are a special needs parent.

When Emma (16) received a cortical visual impairment diagnosis at age four, CVI literature was not widely available. The consensus was “this is just what she has, live with it,” says her mother, Lynn Elko. Her family didn’t know great gains could be made. They didn’t know how to help her learn or meet developmental milestones. Then Lynn discovered what kids with CVI can accomplish with strategic, appropriate interventions that give them visual access to the world. And that changed everything.

Judy Endicott works with her grandson River (9) on his reading skills, relying on her background as a special educator and continuing education in CVI principles and practices. How does she manage to keep up with his needs, including the countless custom materials he requires to access print? What techniques does she use to motivate him to practice? Judy talks about putting the CVI overlay on River’s reading curriculum.

Reflecting on 2018, I realize just how important parent advocacy has been for our kids. But systematic problems stand in the way of providing them with the medical care and educational plans that they deserve. There are disagreements within the field over these problems and how to handle them. So, what next?

Reflecting on 2018, I realize just how important parent advocacy has been for our kids. But systematic problems stand in the way of providing them with the medical care and educational plans that they deserve. There are disagreements within the field over these problems and how to handle them. So, what next?

Sisters Anna Ault and Lori Kinney are raising daughters with visual impairments. One has cortical visual impairment, the other an ocular visual impairment. We discuss their parallel but unique experiences advocating for CVI and Leber’s congenital amaurosis.

Opera performance student Dagbjört Andrésdóttir gives us a glimpse into her life with cortical visual impairment, describing music and strong parental support as her saving grace.

A premature infant gets a diagnosis and appropriate early intervention. With neuroplasticity and dedicated parents on his side, he’s heading to kindergarten with improved functional vision and a CVI-rich IEP.

Perkins-Roman CVI Range Endorsed O&M specialist helps her son improve his vision.

A new CVI diagnosis helps a mom understand why her son is so frustrated. He can't interpret what he sees.