Who Lives Like This?!
Summary: Join us on our podcast journey to learn from conversations with OUR kinds of celebrities - caregivers living this life honestly and making an impact for our children and others. We’ll also be talking to the other experts, those who help us and fight for us in education and the medical field, for disability rights and so on.
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.
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.
This week, we had the pleasure of speaking with guest Chris Gabbard, author of “A Life Beyond Reason: A Father’s Memoir.” Chris is an associate professor at the University of Northern Florida. He published “A Life Beyond Reason” after his son August, who was born with significant disabilities, passed away in 2013. This week’s podcast delves into the beautiful life story of August and the real world consequences of a broken safety net.
A writer and artist, Amy Webb (aka Miggy) is a passionate advocate for disability rights and writes about the issues her family frequently faces. She interviews other special needs' families and individuals with the hope of changing the perception of disability one story at a time. In today's podcast, we delved into Amy's journey and learned that Amy's life as an artist is what sustains her, what gets her out of bed in the morning and persists despite the challenges and joys of parenting in general. Amy shared the genesis of her children's book When Charley Met Emma, a creation that grew out of a blog post that she's written for years called Miggy's Guide to Navigating a Special Needs Encounter. When Charley Met Emma, illustrated by Merrilee Liddiard, is a children's book about a boy named Charlie who goes to a playground with his mother and has an encounter with a girl in a wheelchair -- a girl named Emma with limb differences. We hope you enjoy the show and we highly recommend you check out the book. Please subscribe to the show and give us a review on your favorite podcast provider: Apple Podcasts: bit.ly/ApplePodcastReview Google Play: bit.ly/GooglePodcastReview Spotify: bit.ly/SpotifyPodcastReview
We have been on a brief hiatus due to a couple of chaotic weeks for your favorite podcast hosts. In this episode Elizabeth and Jason check-in on each other, talk about an Alaskan adventure, children leaving the nest and much more. We also highlight our favorite episodes and insights from the last few months of shows. We hope you enjoy it! If you have a minute, please subscribe to the show and give us a review on your favorite podcast provider: Apple Podcasts: http://bit.ly/ApplePodcastReview Google Play: http://bit.ly/GooglePodcastReview Spotify: http://bit.ly/SpotifyPodcastReview
Elizabeth met Amy Silverman in real life when she was asked to "engage in conversation" with her at my local independent bookstore. She knew of Amy at the time as a journalist who had recently published a memoir called My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome. We parents of children with disabilities and special needs know one another because of the communities we have created, and Elizabeth had seen Amy's work online, had friends who knew her and was otherwise familiar with her, but it was such a joy and honor to finally meet and then talk writing, books and -- well -- parenting a kid with special needs. In today's podcast, we got to pick Amy's brain on her new projects and what's been happening with her and her family since the book was published. Amy is funny -- so funny, in fact, that we laughed throughout the whole episode, and I think you'll very much enjoy joining us! Amy is a freelance writer/editor/teacher in her hometown of Phoenix, Arizona, a place she's still learning to love. She's married to Ray Stern, an editor at Phoenix New Times, the alternative newsweekly. They have two children, Annabelle and Sophie. When Sophie was born, the couple were surprised to learn that she had Down Syndrome. As Amy said, "Wait a second, I have never written about Down syndrome. I have never met a person with Down syndrome. I don't know anything about people with intellectual disabilities. [I] had to have a real come-to-Jesus with myself, which is not easy for a Jewish girl, and realize that I was the one who avoided people with Down syndrome in the checkout line at Safeway." In today's conversation, we spoke about the transitions our children face when their older siblings leave home for college, and that led to Amy telling us about her daughter Sophie's persistent questioning of her own place in the world.
In today's podcast, we had the great pleasure of talking with Heather Barnes Jackson, the co-founder and CEO of the Realm of Caring Foundation (RoC), an internationally acclaimed non-profit primarily serving families who are dealing with life-limiting and chronic health conditions and are using cannabinoid therapy. The foundation serves over 55,000 families and 1500 Health Care Professionals from all over the world through their care center that speaks 5 languages and fields over 7000 inquiries monthly. They reach over 1 million people a month through their efforts and awareness. RoC is doing innovative and first of its kind research with Johns Hopkins University, collaborating on the largest registry in the US. They use this research to deliver revolutionary education to the community. RoC has distributed over $350,000 in grants to families in need. They also have aided in over twenty states adding cannabis legislation since 2014. Heather talked a bit about how she started Realm of Caring and how it grew over 10,000% since 2013. She's also a published researcher, an author and a speaker who has presented in 7 countries. Today she shared with us her passion for community, social entrepreneurship and "disrupting the status quo." We got tips on how to turn off social media and take care of yourself, and she wowed us with an intense discussion of her most recent obsession -- suffering and grief and praise.
Jason and I were particularly excited to invite Dr. Rita Eichenstein on the podcast because her book has been cited many times by our guests -- including Jason! -- as one of the most meaningful ones they'd read as a caregiver and one that they regularly recommended to other caregivers. She wrote Not What I Expected: Help and Hope for Parents of Atypical Children to help parents learn to cope with "the roller coaster of feelings parents encounter parenting a child who is different from what 'they expected.'" Rita is a noted psychologist, pediatric neuropsychologist and author, renowned in the field of child development. She also has a private practice in Los Angeles and has served both atypical children of all ages and their parents for over 25 years.