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 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.
In today's podcast we spoke with Jessica Patay a mother, wife, and advocate for mothers of special needs children. She is also a coffee and book addict, who has no business buying any more books this century. Or shoes. Married to her husband Chris for 22 years, she uses her psychology degree to artfully and carefully lead her lovely brood of 3 teenagers, Luke (18), Ryan (15), and Kate (13). Ryan was diagnosed at birth with Prader Willi Syndrome, a rare genetic disorder marked by hyperphagia, low muscle tone, obsessiveness and anxiety. Ryan is her "most grateful child," Jessica says, a sensitive boy who suffers from extreme anxiety but whose heart is huge. In today's podcast, Jason, Jessica and I spoke about the intuitive powers of our children, their empathy for others and sensitivities that belie their diagnoses of cognitive impairment. We also spoke about sibling issues, and Jessica shared some tips and great ideas on how their family has managed to juggle alone time with each of their typical children. Our discussion includes Jessica's current passion, the organization she has created called We Are Brave Together. Jessica describes the group as "a beautiful collision" of her life as a special needs mother and a passionate lover of female friendships and closeness.
In today’s episode, we covered a broad range of topics with Hillary Smiley including practicing gratitude and finding the gifts in the everyday moments of this life. "Anything, if offered to God, can and will become your gateway to joy." -Elisabeth Elliot That's a quote that Hillary Smiley uses as a touchstone. She is a photographer based in Los Angeles and has been married for 15 years. They have four children, the oldest is thirteen and the youngest, aged four. Their third child, ten-year old Luke, was born with chromosomal and brain abnormalities and the rarest form of a rare syndrome. Despite the challenges that come with being a special needs parent, Hillary regularly looks for and counts the gifts that God has given her, especially in the often missed, everyday moments of life.
In today’s episode, we had the pleasure of speaking with Amialya (Mia) Durairaj a writer, communications consultant, advocate and caregiver of two children with special needs. We covered a broad range of topics about work life balance as a special needs parent and the special skills we develop along the caregiver journey. Mia is a mom of identical twin toddlers, both of whom have special needs. The girls, now aged two, were born three months early and had respiratory and cardiac issues related to prematurity. Both girls have had numerous surgeries and spent many months in and out of the hospital, but Mia reports that "things continue to look up, and they're both doing great now." Mia, her husband and the girls live in San Diego, California. When she isn't wrangling her kids, Mia is a health writer and communications consultant at Little Octopus, LLC, and her work has been published in The Washington Post, a recent World Health Organization report, Hand to Hold, The Mighty and more. She's also the co-creator of Mindful Return's Balancing Career with a Special Needs Baby program which has been featured in numerous parenting and family magazines and periodicals. As if that isn't enough to keep her busy, she's the founder and co-chair of the Cardiac Family Advisory Council at Rady Children's Hospital in San Diego, California.
Finally a podcast with siblings! Given the repeated request for a podcast with siblings, we've finally come through and are thrilled to introduce you to two stellar young men: Henry and Toby. Henry Beglinger is a native Angeleno, the middle child and younger brother to Sophie, Elizabeth's daughter who has a refractory seizure disorder and severe developmental disabilities. Toby Okoye also attends Gonzaga where fate threw Henry and him together as friends and now roommates. Toby lives with his parents and siblings in Puyallup, a small city outside of Seattle. He is the oldest of four children by six years; his younger sister and two brothers are triplets who were born prematurely and who each have autism. As our discussion with Henry and Toby progressed, we hung back with our mouths open, stunned at the beauty and wisdom that came out of these young men. We talked about the guys' early experiences with their siblings, when they figured out that something was "different" about their siblings, and how they coped with stressful situations over the years.
Jason and I were so excited to talk this week with A. Laura Brody, an artist here in Los Angeles with an exquisite sensibility. She describes herself as "a sculptor of the human body and its vehicles." Her sculptures are conceived with "a commitment to social justice and are inspired by art history and the spirit of scientific discovery." Her career as a professional costumer coupled with a passion for reuse gave her the skills needed to turn wheelchairs, walkers and mobility scooters into sculptural works of art. Laura believes that disability is a natural human condition and that instead of "fixing," hiding or denying it, we should make it "thrive."
In today's podcast, Jason and Elizabeth have a great discussion with Ray Mirzabegian, husband to Arsinah and father to two girls, 14 year old Emily and 18-month old Ileana. Ray's daughter Emily was diagnosed as an infant with Dravet Syndrome, a rare and debilitating epilepsy marked by brutal seizures resistant to pharmaceuticals. On the podcast, Jason, Elizabeth and Ray discuss Ray's career change, his drive to help Emily and the countless other children like her. It's an amazing story of a man quite literally obsessed, who works tirelessly now, with his brothers, in charge of the California distribution of Charlotte's Web.™ He founded the California Chapter of the Realm of Caring™ Foundation and launched an organic THC products company called Canniatric™, which caters strictly to the medical cannabis pediatric patients suffering from neurological disorders and childhood cancers. Ray spoke about all of the challenges and obstacles that come in the industry, the "cat and mouse" game that it entails and, as always, the stories of the children and families that keep him going.
In today's podcast, Jason and Elizabeth have a lively discussion with Roslyn Rawlins, a single mother of two young women, Ryan (23 years old) and Sydney (19 years old), and an entrepreneur with lifelong experience in healthcare. Elizabeth met Roslyn some years ago online as they both have daughters with epilepsy. The conversation today delved into all the experiences Roslyn had as a single mom and caregiver for a child who had significant medical issues but who is doing fantastic now as a young adult. The podcast therefore has a bit of a different spin. We've talked so much here on Who Lives Like This?! with caregivers of very young children or of children who are now young adults living at home with profound and continued caregiving needs. While Roslyn's years as a caregiver were arduous and even harrowing, we appreciate how important and interesting it is to speak to someone who has "been in the crunch" and is now in a sort of transition period with her daughter off living her life independently.
Lisa Lilienthal is a wife and mother, a writer and publicist, using storytelling to build mission-based brands. She’s used a wheelchair since age 8, and together with her husband Gene, is raising two kids with special needs. In today's podcast, Jason, Elizabeth and Lisa had a wide-ranging discussion about Lisa's unique experience of raising two kids with special needs even as she navigates the world as a disabled person herself.
Today we're doing something a little different at Who Lives Like This?!, and in so doing, building our community a little bit more. We're cross-podcasting -- is that an expression? -- with podcaster Mary Susan McConnell. The Mama Bear podcast is "a place for women raising children with special needs to get together and chat about life." In today's podcast, Jason, Elizabeth and Mary Susan talk primarily about caregiver burn-out and planning for the future, but they agreed that the connections made "in this life we live" have been profound and completely life-altering.
Jason, Elizabeth and Dr Bonni Goldstein discuss the history of the marijuana plant and its medicinal benefits, as well as the obstacles families of children with complex healthcare needs have faced in access and use of cannabis medicine for their children. Dr. Bonni also speaks as a caregiver to caregivers. In the show she also reveals how the endocannabinoid system of caregivers and those who experience chronic stress can become unbalanced. Bonni Goldstein, MD is the Medical Director of Canna-Centers Wellness and Education, a California-based medical practice devoted to educating patients about the use of cannabis for serious and chronic medical conditions. After years of working in the specialty of Pediatric Emergency medicine, she developed an interest in the science of medical cannabis after witnessing its beneficial effects in an ill friend. Since then she has evaluated thousands of patients for use of medical cannabis. She has a special interest in treating children with intractable epilepsy, autism, and advanced cancers. Dr. Goldstein recently authored the book Cannabis Revealed: How the world’s most misunderstood plant is treating everything from chronic pain to epilepsy. Dr. Goldstein has presented her clinical experiences at both national and international medical conferences. She has appeared on the TV show The Doctors and is featured in a new documentary called “Weed the People” featured at the 2018 South by Southwest festival.
November is National Family Caregivers Month, otherwise known by the fabulous acronym NaFaCaMo. While we at Who Lives Like This?! are thrilled to have a whole month dedicated to celebrating our fabulous selves, we can't help but laugh at the profane possibilities of both pronouncing its acronym and -- well -- the comic liberties of celebrating caregivers in general. Our beloved Sandra Stein, who graced us with her inimitable wit some months ago, is back in today's podcast, reading poetry, regaling us with stories of caregiving and even Mother FaCaing Miracles! Enjoy, and please join our FaceBook group to send us YOUR stories! Disclaimer: Profanity is involved, so please abstain if you are offended by it!