Who Lives Like This?!

We had a great conversation in today's episode with Monika Jones, a mom who abandoned her legal career after her first son was born with a massive unilateral brain malformation, which caused him to have hundreds of seizures a day and led to a surgery to remove half his brain. Monika has dedicated herself to serving the community of children who need brain surgery to stop seizures that medications cannot control. She is a staunch advocate for the educational rights of children with disabilities and believes that every child - no matter how complex their support needs - has the capacity to learn. Monika lives in Altadena with her husband, Brad, her boys Henry and Thomas, and two very spoiled dogs.

In 2011, she and her husband founded the Brain Recovery Project to help children reach their full potential after epilepsy surgery. They were both frustrated with the lack of direction after surgery and wanted to help other parents navigate similar paths. “We didn't know what to do with our child [after surgery] to help him learn how to walk and learn how to talk. And was he ever going to read? What was his life going to be like? There was no roadmap, because research wasn't really focusing on what the effects of these surgeries are and how to improve the outcomes.” The Brain Recovery Project offers special education advocacy and parent education, in addition to family and professional conferences and other education initiatives.

We are so excited that we had the opportunity to speak with Anat Baniel, a woman whose work continues to be at the forefront of the emerging brain plasticity field, as well as the understanding of the role of movement in child development, health and vitality.

Anat is the founder of the Anat Baniel Method® NeuroMovement®,a holistic approach that utilizes movement in all its forms. This approach helps upgrade the functioning of your brain, which in turn helps you learn and think better, overcome pain and move better, and achieve new levels of performance. Over the past 30 plus years, Anat has worked with athletes, musicians, and other high performers as well as thousands of children diagnosed with cerebral palsy, autism spectrum disorder, ADHD, genetic disorders and more. She developed Anat Baniel Method NeuroMovement that provides both practice and theory supported by current brain science. She is the author of the highly acclaimed book Kids Beyond Limits and the bestselling Move Into Life: NeuroMovement for Lifelong Vitality.

It is our great privilege to have Ilene Chazan on the podcast today, particularly as she has rounded out the trio -- her husband, Chris Gabbard, and daughter, Clio Chazan-Gabbard were also guests, and Jason and I had the unique privilege of interviewing each member of their family about their lives as caregivers. They are terrific individuals and provide personal perspectives on their life with the late August Chazan-Gabbard, Ilene and Chris' son and Clio's older brother.

Ilene describes herself as a mother, wife, physical therapist and Pilates instructor. She grew up in a suburb of Los Angeles and went to college in Santa Barbara, near the ocean, which she loves. In 1990, her love of science and physical activity brought her to Boston where she became a physical therapist. She began her career in San Francisco, where she met Chris. The couple married in 1992, and in August of 1999, she gave birth to their first child, August Chazan-Gabbard who was the subject of prior podcasts with her husband and daughter. In 2001, the small family moved to Jacksonville, Florida for Chris' work and later that year, Ilene gave birth to Clio. Currently, Ilene owns a small business in Jacksonville, where she practices as a physical therapist and Pilates instructor. She still loves nature, physical activity, being a mother and cooking.

Ben Marcovitz is an entrepreneur, nonprofit leader, leadership consultant, and executive coach. When his first child Zoe was born with a heart abnormality, the doctors told Ben and his wife that their daughter had little chance of developing at all. Seven years later, Ben says that things turned out better than they could have imagined, and he stresses the importance of having hope even when there is only a small chance of success. Ben’s experience as a caregiver has transformed the way that he approaches his work as an educator.

We are so excited to release our newest podcast with guest Ryane Granados, who is a writer, recently retired professor, wife, and mom. We had a fantastic conversation about Ryane’s work as an advocate for parents and children with disabilities, the importance of theme songs and laugh therapy, and the intersection of invisible diagnoses with race, gender, and implicit bias.

This week, we’re excited to release our newest podcast with guest Megan Dolan. Megan is an actor and writer who self-identifies as a “lemur mom” -- because, in her words, “we can’t all be tiger moms.” We had a great conversation about what it means to be a lemur mom, how Megan has worked through her own diagnosis along this journey, and balancing home life with her wonderful creative work. Click the link in our bio for the full episode!

Strap on your seatbelts!

You're in for a real ride with today's guest, Erin Starks. Her bio alone will leave you shaking your head in wonder, so wait until you hear all that she shares with us!

As an educator, health advocate and mother of six children, Erin has spent more than a decade advocating for the rights of children and young adults with disabilities and their families. She has worked with fellow educators, families and students in underserved communities throughout Atlanta and South Los Angeles. Her work is anchored in the belief that all children deserve the right to access valuable resources that enhance their learning in inclusive, diverse learning communities. She's leveraged her experience as the mother of a sixteen year old daughter, Kamiyah, who was born with a rare form of dwarfism, to continue her advocacy work for special education students through elementary school and beyond. 

In addition to her work in the classroom, Erin is the Founder and Director of OHMGirls Yoga, an inclusive yoga community devoted to helping teens cultivate resilience, through mindfulness, movement, and meaningful community. She’s also the Founder and Co-Owner of Miya Organics, a wellness company with a mission to develop products that have a positive environmental impact. In January 2020, Miya Organics will be launching a pilot program that provides work-based training to young adults with special needs who have a desire to learn the art of candle making and enhance their independent living skills, while creating products that add value to the lives of others.

Jason and I have had a brief hiatus and are back this week with Christy Shake, a writer, blogger, epilepsy advocate and champion of medical marijuana. Originally from the Seattle area, Christy came to Maine with her partner, professor and photographer Michael Kolster, by way of San Francisco where she had begun a successful career as an apparel designer. The birth of their son Calvin, now fifteen, required Christy to surrender her profession in order to care for him. Within weeks of Calvin’s complicated and fraught birth, she began writing about the experience. In 2010 she launched her blog, Calvin’s Story, in which she explores, among other things, motherhood, disability, epilepsy, medical cannabis, loss, grief, bigotry and injustice. She, Michael and Calvin live in Brunswick, Maine with their wackadoodle, Smellie.

In today's podcast Christy speaks as honestly about the grit of parenting a child with significant disabilities as she sheds light on the grace of it all.

It's been a few weeks since we recorded a conversation with seventeen-year-old Clio Chazan-Gabbard, the daughter of our recent guest Chris Gabbard. During those weeks, we have touched on just how moved and almost overwhelmed we were by this beautiful human being. We are so honored as parents of children with disabilities that Clio shared her life and experience with us. We know that you will feel the same and hope that you will share the conversation with your own children.

Regular listeners know that we usually talk with caregivers and siblings of children and young adults with disabilities, but every now and then we also like to pick the brains of or highlight those people who support us in the care of our children. Dr. Audrey Griesbach is a developmental pediatrician in the Los Angeles area whose practice is devoted entirely to the comprehensive evaluation and treatment of children with a wide variety of neuro-developmental disorders, including autism, cerebral palsy, genetic disorders, developmental and cognitive delays, learning disabilities, and ADHD and other behavioral disorders.