17 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
    • 5.0 • 34 Ratings

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.

    Sweet Valentina | Cindy Younan

    Sweet Valentina | Cindy Younan

    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, which include severe ventriculomegaly, hydrocephalus and cortical visual impairment.

    • 57 min
    Hindsight and Insight | Kira Brady

    Hindsight and Insight | Kira Brady

    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.

    • 56 min
    The PhD and the IEP | Barbara Lopez Avila

    The PhD and the IEP | Barbara Lopez Avila

    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…

    • 51 min
    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

    Team Archer! | Cheyanne Marcy

    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

    This Mom With a Blog | Mia Carella

    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

Customer Reviews

5.0 out of 5
34 Ratings

34 Ratings

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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