Out of Sight: The Shocking Discovery of a Teen's Hidden Blindness

Modern Nurture

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In this episode, Jess delves into the topic of Cortical Visual Impairment (CVI), a common yet underrecognized condition, through a conversation with Stephanie Deusing, a mother who discovered her son's almost complete blindness due to CVI only when he was 15. Despite a high IQ, academic excellence, and no visible signs of blindness, Stephanie shares the journey of realization, diagnosis struggles, and the extensive yet often dismissive medical consultations they endured. The discussion highlights CVI's prevalence, exceeding that of autism, and its symptoms like face blindness, navigational challenges, and misunderstandings within medical and educational systems. Stephanie emphasizes the importance of early music and movement for developmental support, the difficulties in obtaining a CVI diagnosis due to the lack of a diagnostic code, and the societal misconceptions about vision and blindness. She advocates for greater awareness, education, and research to support those affected by CVI.
00:00 Intro
02:58 Sebastian's Development and Gifts
05:41 Gifted but Wouldn't Talk about School
07:37 Anxiety as an Early Sign
10:28 The Subtle Sign her Son was Blind
20:45 The Realization
27:43 Getting a Diagnosis
35:00 Heat, Stress, Exhaustion Can Cause Full Blindiness
37:25 CVI is #1 Cause of Visual Impairment in Developed World
39:26 How Vision Works, & What is CVI
42:10 What Causes CVI?
49:17 What Signs Can Parents Look For?
Learn more about CVI:
https://www.nei.nih.gov/about/news-and-events/news/vision-loss-children-whose-eyesight-may-be-2020-requires-new-diagnostic-and-teaching-strategies
https://www.optometrytimes.com/view/getting-to-the-heart-of-pediatric-vision-loss-and-blindness
https://www.sciencedirect.com/science/article/abs/pii/S0028393221002359
https://www.npr.org/sections/health-shots/2014/05/26/314621545/the-blind-woman-who-sees-rain-but-not-her-daughters-smile#:~:text=You%20can%27t%20see%20a,stroke%20at%2029%20years%20old.
https://cviscotland.org/
https://www.perkins.org/our-work/cvi/
Connect with Stephanie:
Stephanie’s Book, Eyeless Mind https://a.co/d/bnNLrxM
https://stephanieduesing.com/
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