Out of Sight: The Shocking Discovery of a Teen's Hidden Blindness
05/18/24 • 67 min
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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/
More from Modern Nurture:
* Don’t miss an episode, subscribe on Instagram, Youtube, or your favorite podcast platform!
* Youtube: https://www.youtube.com/channel/UChTYPNK8anjiqFKTCa5LyRA
* Instagram: https://www.instagram.com/modernnurturepod/
* Apple Podcasts: https://podcasts.apple.com/us/podcast/modern-nurture/id1736984175
* Spotify: https://podcasters.spotify.com/pod/jess--modern-nurture-podc
Send me a Text Message, for free! I'd love to hear from you.
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/
More from Modern Nurture:
* Don’t miss an episode, subscribe on Instagram, Youtube, or your favorite podcast platform!
* Youtube: https://www.youtube.com/channel/UChTYPNK8anjiqFKTCa5LyRA
* Instagram: https://www.instagram.com/modernnurturepod/
* Apple Podcasts: https://podcasts.apple.com/us/podcast/modern-nurture/id1736984175
* Spotify: https://podcasters.spotify.com/pod/jess--modern-nurture-podc
Previous Episode
Navigating Nutrition: From Infant Gut Health to Teenage Athletes
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The Essential Guide to Nutrition from Infancy to Adulthood for Mothers and Children
In this episode of the Modern Nurture Podcast, the host Jess and guest speaker, Stephanie from Food Factor Nutrition, explore comprehensive nutrition guidance starting from infancy to adolescence, including special focus on maternal nutrition during preconception, pregnancy, and breastfeeding. They delve into the importance of gut health and probiotics for infants, the significance of watching for reactions to new foods, and debunk common myths around feeding infants. The discussion also covers nutritional needs throughout childhood and into adulthood, focusing on the importance of a balanced diet, vital nutrients, and handling sugar consumption. Additionally, they address dietary considerations for mothers, emphasizing proper nutrition preconception, during pregnancy, and while breastfeeding to ensure both maternal and child health and well-being. Special attention is given to the role of variety in a child's diet, debunking he myths surrounding carbohydrates and fats, and the importance of listening to one's body for nutritional needs.
00:00 Intro
01:29 Infants have Leaky Gut - Proceed with Caution
05:03 Introducing Solids
08:34 How the Infant Gut Develops & Probiotics
16:17 What Foods To Introduce
24:10 Do your kids need supplements?
27:42 Sugar and Processed Foods
32:03 Sugar in Smoothies
33:42 Nutrition Challenges for Older Kids
39:27 Nutrition for Teenage Girls In Sports
Connect with Stephanie:
https://www.instagram.com/foodfactornutrition/
https://www.foodfactornutrition.com/podcasts/the-food-factor-podcast
https://www.foodfactornutrition.com/
Don’t miss an episode, subscribe on Instagram, Youtube, or your favorite podcast platform!
Youtube: https://www.youtube.com/channel/UChTYPNK8anjiqFKTCa5LyRA
Instagram: https://www.instagram.com/modernnurturepod/
Apple Podcasts: https://podcasts.apple.com/us/podcast/modern-nurture/id1736984175
Spotify: https://podcasters.spotify.com/pod/jess--modern-nurture-podc
My recommended workout app! https://www.atgonlinecoaching.com/?rfsn=7903870.4e38cf6
(affiliate link)
Next Episode
Halt Colic in 5 Easy Steps!
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The Five S's: A Guide to Calming Your Newborn
In this episode of the Modern Nurture Podcast, host Jess explores Dr. Harvey Karp's approach to soothing crying infants, known as the 'calming reflex', through his recommended five steps, or the 'Five S's': Swaddling, Side/Stomach Position, Shushing, Swinging, and Sucking. Jess shares her personal experiences with these methods, detailing each step's effectiveness and her insights on recreating the womb's environment to calm a newborn. Despite some skepticism and challenges in instantly calming her baby, Jess finds value in these techniques for soothing infants and encourages parents to integrate them into their care routines.
00:00 Intro
00:27 The Newborn Calmining Reflex
01:27 The 5S's
04:00 What I Wish I'd Done Better
05:22 Update!
* Don’t miss an episode, subscribe on Instagram, Youtube, or your favorite podcast platform!
* Youtube: https://www.youtube.com/channel/UChTYPNK8anjiqFKTCa5LyRA
* Instagram: https://www.instagram.com/modernnurturepod/
* Apple Podcasts: https://podcasts.apple.com/us/podcast/modern-nurture/id1736984175
* Spotify: https://podcasters.spotify.com/pod/jess--modern-nurture-podc
Happiest Baby on the Block
Noise Machines Mentioned:
- https://www.amazon.com/Yogasleep-Portable-Soothing-Rechargeable-Baby-Safe/dp/B01D50RYSC/ref=sr_1_1?crid=1V3C11KMEPKSB&dib=eyJ2IjoiMSJ9.fxKKUIQlkSfUYYv0U8g_ftF0VRsG8Uv-IpUUPdBcmUzso4NRn-w1M92m67nSrnfLNNvPfHyk6HpdJgOCt3T62RBR2Co8lRZUxe7S9haFTt128lVu9yztR7zgDIIpfBrt9Kci_AOHEiE9831EIrhi6uSdOteZ3GdwDCNxW07zbntZM3e6rkGYpVKqyGqOlliWpCAxKYyUrQ-hqzNk_ZGKkg4yBfVgxUTNTVS8tWrvfdA.rWzEtdJKe_hB959l0aJCvrWxo94oiZI1WplGTj9YsPQ&dib_tag=se&keywords=yogi%2Bsleep%2Bsound%2Bmachine&qid=1716500020&s=audible&sprefix=yogi%2Bsleep%2Bsoundmachin%2Caudible%2C127&sr=1-1&th=1
- [https://www.amazon.com/Hatch-Baby-Rest-RIOT/dp/B08YS6S66Z/ref=sr_1_1_sspa?dib=eyJ2IjoiMSJ9.vlw-JBaBfPZ5-bvvTX_sOv
Modern Nurture - Out of Sight: The Shocking Discovery of a Teen's Hidden Blindness
Transcript
Hey mamas, we're going to be doing a slightly different episode today. We're going to be talking with Stephanie deucing she despite having a terrible upbringing. Became a wonderful and attentive mother. And yet she did not notice that her son was blind until he was 15. He was excelling academically. He was high on the IQ charts. He was athletic. No signs of blindness until he was 15. So we're going to talk about that. The realization, the many, many doctor's appointme
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