THE SJ CHILDS SHOW-Building a Community of Inclusion

Episode 319- My Brain Surgery Revealed My Autistic Son's World with Jacki Edry


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What if you suddenly experienced the sensory challenges your autistic child faces every day? Jacki Edry's life took a dramatic turn when doctors discovered a massive tumor on her brainstem. After surgery, she woke to a transformed reality - faces appeared to melt, floors became disorienting patterns, and everyday sounds overwhelmed her completely.

This remarkable conversation explores Jacki's extraordinary journey from being solely a parent and advocate for her autistic son to experiencing neurodistinctness firsthand. As the author of "Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery and Faith," Jacki shares how this dual perspective revealed insights that transformed her understanding of neurodiversity.

The most eye-opening aspect of Jacki's story involves the four years she spent virtually homebound with severe visual processing issues that numerous medical professionals couldn't identify or treat. The solution, when finally discovered, was shockingly simple: custom-colored spectral filters that immediately corrected her visual disturbances. This paralleled her children's experiences, who struggled with reading for years until colored lenses revealed they had been seeing words move across the page all along.

Jacki passionately discusses why parents must trust their instincts and continue searching for answers when conventional approaches fail. "Don't ever accept when a professional says there's nothing you can do," she advises, highlighting how solutions like Irlen Syndrome testing remain largely unknown despite their life-changing potential for many.

For anyone parenting, teaching, or supporting neurodistinct individuals, this episode offers rare insights into sensory experiences that are often difficult to understand from the outside. Jacki's story reminds us that sometimes the most powerful solutions aren't found in traditional medical settings but through persistent advocacy and openness to unconventional approaches.

Discover more about Jacki's work and upcoming projects at jackisbooks.com, and consider how her experiences might illuminate challenges faced by the neurodistinct people in your life.

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THE SJ CHILDS SHOW-Building a Community of InclusionBy Sara Gullihur-Bradford aka SJ Childs

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