Kaleidoscope: The Cortical Visual Impairment Podcast Jessica Marquardt

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, hydrocephalus and cortical visual impairment for the first time – and the steps she’s taken to educate herself and other parents who are experiencing the same thing.
 
Resources:
cvijourney.com
Surrey Place
Perkins CVI Symposium Wrap-Up Podcast
Pediatric Cortical Visual Impairment Society
Perkins CVI Hub
Constraint Induced Movement Therapy (CIMT)
Anat Baniel Method

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 classmates. A former student who paved the way. Transitioning to kindergarten during a pandemic. Resources:
Cerebral Palsy Foundation
Cerebral Palsy and Visual Impairment in Children, Scottish Sensory Centre
CVI Scotland
Perkins eLearning
The Boy Who Could Run, but Not Walk
by Karen Pape
Understanding Facial Recognition Difficulties in Children
by Nancy L. Mindick

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 as well as the educational communities are still far behind in knowing how to diagnose and treat CVI. This leaves parents of children with CVI in much uncertainty about what to do to best help their children.”
Barbara recognizes that she can’t do this alone. So, she’s taken an active role in assembling and collaborating with a team of educational and medical providers who know about CVI or, at the very least, are willing to learn about the condition and how it affects her son.
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.

She writes, “… I learned I was not doing enough to advocate for my child’s needs. Advocacy begins in your home, with our family and friends. It is all too easy to clam up and keep quiet. Sometimes feeling like you are explaining things over and over, then these people are close to you, so offense is taken. The challenge exists consistently.”
We sit down to talk about overcoming the fear of speaking up, vital services and resources for kids with CVI and NeuroMovement.
 
Resources:
Lighthouse Guild Tele-Support Enrollment or email moderator Judith Millman
NeuroMovement practitioner Sylvia Shordike
Find a NeuroMovement practitioner near you
NeuroMovement
sparkingtheneurons.blogspot.com

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 kids with special needs
4:45 – Moving from feeling helpless to feeling more empowered as a mom
9:20 – Explaining rare genetic disorders and little-known conditions, like CVI, to doctors #CVIsplaining
11:30 – What CVI means for Evalyn (late Phase II CVI) in her day-to-day life
13:20 – Advocating for CVI needs in an IEP meeting
18:30 – Participating in The Miracle League and making baseball adaptations
23:50 – What our kids teach us about resilience, positive outlooks and perspective
26:19 – How her blog has changed her life
Resources:
thismomwithablog.com
pcvis.vision
The Miracle League