Kaleidoscope: The Cortical Visual Impairment Podcast

Jul 25 2020 26

Kaleidoscope: The Cortical Visual Impairment Podcast artwork

Cortical visual impairment (CVI) is the leading cause of pediatric visual impairment in the developed world. The eyes can see, but the brain can't interpret the visual world. Due to neuroplasticity, the functional vision of a child with CVI can improve. The number of children with CVI is growing, so why isn't anyone talking about this public health crisis? We are. Music by Storm Crews. Art by Ian Kleinfeld.

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Sweet Valentina | Cindy Younan | 17

Jul 25 2020 57 mins

Cindy Younan, founder of cvijourney.com and mother to Valentina (1.5 years), describes the day during her pregnancy when she found out about her daughter’s complications. There have been highs, lows and personal sacrifices since then, which Cindy has embraced with a positive spirit. We talk about what went through her mind when she heard the terms severe ventriculomegaly, hydroc

Hindsight and Insight | Kira Brady | 16

Jun 06 2020 56 mins

Kira Brady tells the journey to her son’s diagnoses, which include cerebral palsy (CP), periventricular leukomalacia (PVL) and cortical visual impairment (CVI). We marvel at how it can be so difficult to get a diagnosis even when, in hindsight, Mason is considered a “textbook” case. A few things come up: Throwing chairs in the library. When a child doesn’t recognize his c

The PhD and the IEP | Barbara Lopez Avila | 15

Apr 25 2020 51 mins

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). How can that be? She writes in a recent blog post for the Pediatric Cortical Visual Impairment Society, “…while CVI is the leading cause of pediatric visual impairment in developed countries, the medical

Grace Unfiltered | 14

Feb 17 2020 13 mins

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.

Team Archer! | Cheyanne Marcy | 13

Dec 09 2019 62 mins

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. She writes, “… I learned I was not doing enough to advocate for my child’s needs. Advocacy begins in your home, with our family

This Mom With a Blog | Mia Carella | 12

Jul 24 2019 30 mins

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. In this episode: 2:05 – Dance programs for

Word Bubble Much? | Tommy Szalapski | 11

Apr 30 2019 21 mins

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. Tommy describes this project, Google’s Lookout app and emerging technologies that wil

Rosalie, Small but Mighty| Stephanie Kung | 10

Mar 27 2019 59 mins

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. She received a cortical visual impairment (CVI) diagnosis from an ophthalmologist who provided her parents with accurate information, for instance: CVI is a brain-based visual impairment, her brain can learn to better understand what she sees as

Emma’s Renaissance | Lynn Elko | 9

Feb 15 2019 45 mins

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 acc

Helping River Read | Judy Endicott | 8

Jan 24 2019 46 mins

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