The Parts of Profound Autism We Don't Say Out Loud | Jillian Eisloeffel

There are parts of profound autism that rarely make it into public conversation. Severe self-injury. Medical complexity. The fear of not being able to keep your child safe. And the isolation that comes when the world has no idea what life inside your home actually looks like. Jillian Eisloeffel, founder of Bobby's World Profound Autism Advocacy, joins Sarah Kernion for an intimate conversation between two mothers raising children with profound autism. Jillian shares how her son Bob began engaging in severe self-injurious behavior seemingly overnight, changing their family's life and beginning a difficult search for medical answers. She describes the emotional toll of trying to protect him, the barriers to accessing care, and what it means to advocate without a dependable support system. But this conversation is also about the joy of watching Bob reconnect with the world around him, and the profound meaning Jillian finds in the smallest moments of his life. Together, Sarah and Jillian explore why mothers share difficult stories publicly, why caregivers with the greatest responsibilities are often missing from advocacy spaces, and how we might build communities that meet families where they actually are. They also discuss the complicated relationship between honesty and advocacy: how to acknowledge the profound disability our children experience without diminishing their dignity, intelligence or humanity. Because loving our children completely does not require us to pretend that their lives, or ours, are easy. Honesty about profound autism isn't the opposite of love. Sometimes honesty is precisely what love requires. Guest: Jillian Eisloeffel | Bobby's World Profound Autism Advocacy Host: Sarah Kernion | INCHSTONES Podcast More conversations: www.inchstonespodcast.com