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 pare...
Jul 25, 2020•57 min
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 Foun...
Jun 06, 2020•57 min
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 parent...
Apr 25, 2020•52 min
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.
Feb 17, 2020•14 min
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, th...
Dec 09, 2019•1 hr 2 min
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 ...
Jul 24, 2019•30 min
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 will benefit people with cortical visual impairment, like his daughter Jocelyn (9). Resources mentioned: Roman Word Bubbling pr...
Apr 30, 2019•22 min
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 it makes new connections, she needs more time to look at things, and really bright colors and movement will draw her...
Mar 27, 2019•1 hr
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. Af...
Feb 15, 2019•46 min
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. Some suggested resources: Cortical Visual Impairment Advanced Principles, (R...
Jan 24, 2019•47 min
I’m reflecting on 2018. For me, this has been the Year of the CVI Advocate. My life has been transformed by my interactions with fellow CVI parent advocates – online, at conferences and through this podcast. From Start Seeing CVI Advocacy on Facebook to Boston for the CVI Symposium to Omaha for the American Conference on Pediatric Visual Impairment back to Boston for CVI Family Vacation – and even from my closet here in Raleigh – I’ve interacted with some pretty amazing humans who have made this...
Dec 19, 2018•11 min
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. They are raising their kids in the same community – their childhood community, in fact. Their girls are close in age and attend the same public-school system. But as Anna and Lori compare their experiences, it becomes evident that there are f...
Oct 31, 2018•58 min
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. “I kind of knew always there was something, but I wasn’t sure if it was my vision or something else,” says Dagbjört. Three years ago, with the help of her mother, she concluded that CVI was the culprit. To parents she says, “You know your children better than anybody – any physician, any teacher, any person in the worl...
Sep 23, 2018•34 min
Krish (6) received an early CVI diagnosis and guidance from a teacher of the visually impaired who knew how to intervene appropriately, based on his CVI Range score. With neuroplasticity and dedicated parents on his side, he’s heading to kindergarten with improved functional vision and a CVI-rich IEP. In this episode: Coming to terms with the CVI diagnosis. Moving from Phase I to Phase III (Roman). Integrating CVI strategies into the daily routine. What makes an IEP appropriate for a child with ...
Aug 18, 2018•50 min
When Alisha Waugh and her husband learned that their son Griffen (10) has a cortical visual impairment (CVI), they committed to improving his functional vision above all else – and with stellar results. Alisha puts her Perkins-Roman CVI Range Endorsement to work each and every day for Griffen. She is also serving other kids with CVI and their families through her consultancy Fundamentals First . In this episode: Common behaviors seen in children with CVI. Fundamental tools and accommodations nee...
Jul 18, 2018•41 min
Henry (5) has a new cortical visual impairment (CVI) diagnosis. His mom, Rachel, now understands why he is so frustrated. He can't interpret what he sees. Relying on the 10 characteristics of CVI, they infuse vision into everything they do. His vision has improved, and his whole being has too. Not only has Rachel fully embraced the educational approach based on the research of Dr. Christine Roman, she and a group of other CVI moms are building a collective national movement to advocate for kids ...
Jun 05, 2018•42 min
Grace (6) reads sight words, enjoys hearing chapter books and shows an affinity for math. Yet she can’t interpret illustrations in a children’s book or recognize the faces of her mother and father. Her parents on the struggles and joys of raising a child with cortical visual impairment. In this episode: An early diagnosis but a late understanding of its implications. The “aha!” moment – a reframed diagnosis. Getting a CVI Range assessment from Dr. Christine Roman. Working with and within the pub...
May 17, 2018•43 min
