14 episodes

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.

Kaleidoscope: The Cortical Visual Impairment Podcast Jessica Marquardt, CVI Parent Advocate

    • Parenting

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.

    Grace Unfiltered | 14

    Grace Unfiltered | 14

    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.

    • 13 min
    Team Archer! | Cheyanne Marcy | 13

    Team Archer! | Cheyanne Marcy | 13

    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.

    • 1 hr 2 min
    This Mom With a Blog | Mia Carella | 12

    This Mom With a Blog | Mia Carella | 12

    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.

    • 30 min
    Word Bubble Much? | Tommy Szalapski | 11

    Word Bubble Much? | Tommy Szalapski | 11

    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.

    • 21 min
    Rosalie, Small but Mighty| Stephanie Kung | 10

    Rosalie, Small but Mighty| Stephanie Kung | 10

    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.

    • 59 min
    Emma’s Renaissance | Lynn Elko | 9

    Emma’s Renaissance | Lynn Elko | 9

    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.

    • 45 min

Customer Reviews

CVImatters ,

Access

This podcast offers families and friends of children affected by CVI something we all need more of: hope. Each episode is an opportunity to follow one child’s unique path from diagnosis to present. Each child featured has a message for us. Each parent interviewed has shared something which inspired me. This is awesome! Thank you.

steffie.k ,

CVI Parents: You’re Not Alone!

This podcast provides much-needed inspiration, hope, and information for all those affected by Cortical Visual Impairment. Thank you, Jessica, for sharing these stories of neuroplasticity and people’s journeys with CVI - the triumphs, the struggles, and the often invisible, constant, hard work of parents (and some professionals) in-between.

fansofhaveanother ,

At last!

Finally a chance for families to speak for themselves. Your poscast is informative, poignant, and meaningful. Thank you so much for the generousity you demonstrate in the sharing of your story. I am so grateful for your contributions.

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