Wisdom Shared with Carole Blueweiss: Recent Episodes
Dr. Carole Blueweiss
Meet the experts on the frontlines: the parents of children with special or unique needs. What do they wish they knew then that they know now? These parents share their insights and experiences with traditional and non-traditional professionals, their advice, and their wisdom. The lessons learned are valuable for all parents, health care workers, and educators.
Episode Summary Sharon "Rocky" Roggio is my special guest - the producer and director of the award-winning documentary "1946: The Mistranslation that Shifted Culture." This film explores the profound impact of a mistaken biblical translation of the word "homosexual" and its consequences on culture, religion, and the LGBTQ community. Rocky shares her personal journey as a Christian lesbian, discussing her efforts to seek acceptance and understanding from her father, a church pastor. Through these conversations, listeners gain insight into Rocky's experiences and the broader implications of this pivotal mistranslation.
About Sharon "Rocky" Roggio1946’s director, Sharon “Rocky” Roggio is no stranger to the implications of a life completely affected by the predominant modern interpretations of the Bible. Growing up lesbian in a Christian household, with a pastor for a father, has prepared her for this expansive undertaking. Rocky’s experience, of anti-gay biblical teachings, has been incredibly traumatic. She is a strong voice, among the growing chorus of LGBTQIA+ Christians who want to cure the world of this damaging narrative. Once Roggio learned of Kathy and Ed’s work, she was compelled to tell this story. This film is part of her attempts to reconcile a relationship with her family and begin to heal.
Sharon “Rocky” Roggio is an multi award-winning film producer and director living in Los Angeles, CA. She has been a member of three IATSE unions nationwide and has a Bachelor’s degree in Communications with a focus in Radio, Television and Film Her background includes large budget physical production on award winning shows and films such as House of Cards, Parks and Recreation, With Bob and David, Whip It and Red Dawn. In 2016, Roggio associate produced and production designed GOOK, a feature film that premiered at Sundance in 2017 and Won the Audience Award in the Next Category. In 2018 when she heard about the 1946 mistranslation in the Bible, Roggio immediately quit all her other endeavors and has focused all her time, money, and resources on producing and creating this documentary. 1946 is Roggio’s directorial debut.
About 1946: The Mistranslation that Shifted Culture1946: The Mistranslation That Shifted Culture is a feature documentary that follows the story of tireless researchers who trace the origins of the anti-gay movement among Christians to a grave mistranslation of the Bible in 1946. It chronicles the discovery of never-before-seen archives at Yale University which unveil astonishing new revelations, and casts significant doubt on any biblical basis for LGBTQIA+ prejudice. Featuring commentary from prominent scholars as well as opposing pastors, including the personal stories of the film’s creators, 1946 is at once challenging, enlightening, and inspiring.
Watch the trailer.
Watch the full feature film today.
https://www.1946themovie.com/
1946 Roadtrip Across America - We are THRILLED to announce our plan to utilize the award-winning documentary, 1946: The Mistranslation That Shifted Culture, as a tool for civic engagement and to drive voter registration for the 2024 election. Our mission is to organize 14 free public conferences in US cities impacted by extremist ideologies. The primary objective of these assemblies is to activate the audience to vote as we advocate for the rights of the LGBTQIA+ community, standing up for democracy and promoting equality for everyone. We will discuss the power of civic engagement to stop evangelical and legislative domination and provide people with a sustainable narrative of compassion founded on research, history, and facts. AND - We will SHOW THE FILM - followed by a Q&A with the filmmakers and director Sharon Roggio!
From This Episode* Kathy Baldock CanyonWalkerConnections.com * Jill Woodward, documentary editor * Jena Surbu, Writer/Producer * The Reformation Project * David Fearon
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to YouTube channel * Follow and send a message on Facebook * Follow and send a message on LinkedIn * Follow on Instagram * Follow on TikTok * Follow on Threads
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Co-Producer and Marketing Coordinator: Kayla Nelson * Production Assistant: Becki Leigh
Episode SummaryIn this conversation with filmmaker and self-described Renaissance Man Stewart Schulman, we discuss his multifaceted career and his collaborations with John Bayless, highlighting projects like One Hand One Heart and the award-winning feature documentary Left Alone Rhapsody: The Musical Memoir of Pianist John Bayless. Schulman shares Bayless' life from childhood illness and genius piano playing at age four to Julliard as Leonard Bernstein's protege; from his Baptist upbringing to conversion to Judaism; and from playing the piano around the world as a Steinway then Yamaha artist with two hands to his re-invented life post-stroke re-learning to play the piano with his non-dominant left hand. Stewart's stories about his life and the filmmaking process are delightfully accented by John's music and one-man show, One Hand One Heart. I hope this episode (and John Bayless episode!) inspires you to see the fabulous film, Left Alone Rhapsody.
About Stewart SchulmanI love stories. Watching them. Telling them. They’re journeys that open our minds—our hearts—and show us new ways of thinking.
I aim for my work to be entertaining and socially relevant—challenging perceptions and inspiring ‘change’. It’s how we grow.
People I work with have called me a “Renaissance Man”—because I’ve explored many different creative mediums to broaden my skills as a writer, director and producer. They also tell me I bring an even-keeled temperament to the table, keep my work environments professional and enjoyable, and get the job done right.
Contact me with questions. I look forward to working with you in the future.
https://www.stewartschulman.com/
Act Two MediaWorks
From This EpisodeLeft Alone Rhapsody: The Musical Memoir of Pianist John Bayless
- Watch the trailer for Left Alone Rhapsody.
- Watch at Reel Abilities Film Festival in New York City on April 4th, with a live performance by John Bayless on April 8th Free Tickets Here
- Watch at the Sarasota Film Festival on April 10th Tickets Here
- Watch at the Jewish Film Festival of Pittsburgh on May 2nd, with a live performance by John Bayless Tickets Here
- Watch the Long Island Premiere on May 9th at the Jeanne Rimsky Theater , with a live performance by John Bayless
John Bayless – One Hand One Heart: My Life & My Music This new ‘one-man-one-hand only’ play—with music by Gershwin, Bernstein, Puccini, Mancini, Rachmaninoff, Rodgers, Legrand and the world-renowned concert pianist, John Bayless, himself—takes audiences on the journey of John’s remarkable life. John talks openly about his highs and lows, and his determination to create a second act for himself as an artist.
The play begins with a 4-year-old John becoming a musical prodigy in his hometown of Borger, Texas, which sets him on a life-long adventure and a 30-year career as a concert pianist, which is suddenly halted by a debilitating stroke. John shares the "hell" he faced, post-stroke, trying desperately to journey back to life to be an artist in a new way. His spiritual awakening led him to his unbelievable comeback, concertizing with his left hand all alone! This inspiring one-man show evokes laughter and tears, showcasing John’s astonishing musicianship, as he shares his amazing life-story.
Music featured in the episode:
- That's It! composed by John Bayless with Robert Freedman, featured in One Hand One Heart
- Winter Tableau composed by John Bayless, used in collaboration with choreographer Heidi Latsky
- Rhapsody in Blue by George Gershwin, reimagined for one hand by John Bayless
Heidi Latsky Dance
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel * Follow me and send me a message on Facebook * Follow me and send me a message on LinkedIn * Follow me on Instagram * Follow me on TikTok * Follow me on Threads
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Co-Producer and Marketing Coordinator: Kayla Nelson * Production Assistant: Becki Leigh
Episode SummaryMy special guest for this episode is pianist John Bayless, whose story is featured in the incredible documentary Left Alone Rhapsody: The Musical Memoir of Pianist John Bayless. In our conversation, John reflects on life before and after his stroke. Post-stroke, John's resilience shines through as he embarks on a remarkable path of self-recovery and discovery. Teaching himself to play with just his left hand, he defied the odds and embraced a new chapter. John's story and music make this episode a must-listen, just as the documentary is a must-watch.
About John BaylessJohn Bayless is an internationally renowned concert pianist, composer, improviser, and prolific recording artist. A protégé of Leonard Bernstein and a Yamaha artist, John is a crossover artist known for how he blends classical training and piano technique with popular music in imaginative improvisations. Despite a debilitating stroke halting his illustrious 30-year career, John refused to surrender. Instead, he embarked on a second act, teaching himself to play with just his left hand. This story is brilliantly shared in Stewart Schulman's documentary Left Alone Rhapsody: The Musical Memoir of Pianist John Bayless.
From This EpisodeLeft Alone Rhapsody: The Musical Memoir of Pianist John Bayless
- Watch the trailer for Left Alone Rhapsody.
- Watch at Reel Abilities Film Festival in New York City on April 4th, with a live performance by John Bayless on April 8th Free Tickets Here
- Watch at the Sarasota Film Festival on April 10th Tickets Here
- Watch at the Jewish Film Festival of Pittsburgh on May 2nd, with a live performance by John Bayless Tickets Here
- Watch the Long Island Premiere on May 9th at the Jeanne Rimsky Theater , with a live performance by John Bayless
The John Bayless Fund for Brain Research
Yamaha's Disklavier
Music featured in the episode:
- Circle of Life, from the album "Circle of Life: The Music of Elton John in the Style of Bach"
- Goodbye Yellow Brick Road, from the album "Circle of Life: The Music of Elton John in the Style of Bach"
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel * Follow me and send me a message on Facebook * Follow me and send me a message on LinkedIn * Follow me on Instagram * Follow me on TikTok * Follow me on Threads
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Co-Producer and Marketing Coordinator: Kayla Nelson * Production Assistant: Becki Leigh
Episode SummaryIn this poignant episode, Jacob Moench shares the challenges and joys of parenting his son Samuel, who has epilepsy and autism. The episode explores how Jacob and his wife support each other and prioritize time for their other children. Jacob also talks about his company, which offers genetic testing for preventative illness, and we discuss the ethical considerations surrounding the use of DNA analysis for family planning. Despite the challenges, Jacob reflects on the profound impact Samuel has had on their lives, considering him an enormous blessing. This episode offers a powerful exploration of the unique challenges and love that characterize Jacob's journey as a parent of a child with special needs.
About Jacob MoenchJacob Moench is an entrepreneur in the medical industry devoted to preventative genetic testing. He is a devoted husband to his wife of 12 years. He and his wife have four beautiful children, including their oldest, Samuel, who has Autism and Epilepsy. Jacob enjoys playing with his children, basketball, hiking, piano, cooking, and creative writing.
Jacob's blog: https://fathertospecialneeds.blogspot.com/
Jacob's business: https://physiogenomic.com/
Contact Jacob
From This EpisodeFinding Cooper's Voice
Forever Boy: A Mother's Memoir of Autism and Finding Joy
Mark Rober's Video about his autistic son
Steele's Army - Facebook page of an epilepsy family that Jacob recommends
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel * Follow me and send me a message on Facebook * Follow me and send me a message on LinkedIn * Follow me on Instagram * Follow me on TikTok * Follow me on Threads
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Co-Producer and Marketing Coordinator: Kayla Nelson * Production Assistant: Becki Leigh
Episode SummaryIn this episode, Lynn Greenberg and her son Jonathan, co-authors of Robby the Dyslexic Taxi and the Airport Adventure, share insights into Jon's journey with dyslexia. Emphasizing the transformative impact of education post-diagnosis, they discuss the power of creativity and the hidden gifts of neurodiversity. Jon, who views dyslexia as a superpower, aims, along with his mother, to inspire and empower neurodiverse children through their storytelling. This episode is a valuable resource for parents and teachers, offering insights and guidance for a more inclusive and understanding approach.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video on YouTube: https://youtu.be/qYBVQJqdfo8
From This Episode Defining terms:* + dyslexia, dyscalculia, dysgraphia + neurodiversity * The Windward School * The Orton Gillingham Approach
About Lynn and JonathanLynn Greenberg is the happiest wife, mom, and grandma. A very retired attorney who loves to cook, exercise, and read, she has seen how positivity with feelings and differences can allow children to grow into happy, productive adults. During COVID-19, when many families were living together with an abundance of unscheduled free time, Lynn and her son Jonathan, who has dyslexia, began to work on the concepts and ideas for Robby. As ideas developed, they became increasingly invested in the character, his story, and the impact this endeavor could have on others.
Born with dyslexia, Jonathan Greenberg could not read and write like many other children his age. So, instead of giving in to frustration, Jonathan used his struggle as a catalyst for creativity, expressing his ideas through art. Having overcome his learning difficulty, Jonathan has fallen in love with reading. Robby the Dyslexic Taxi And The Airport Adventure exemplify Jonathan’s passion for writing and illustration. Together with Lynn, his mother, and his writing partner, they are already thinking of other stories featuring neurodiverse characters that complement this book.
Facebook: Creative Cab Co.
Instagram: @creativecabcompany
Website: robbythetaxi.com
Buy the Book:Robby the Dyslexic Taxi and the Airport Adventure on Amazon
Robby the Dyslexic Taxi and the Airport Adventure on Bookshop.org
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel * Follow me and send me a message on Facebook * Follow me and send me a message on LinkedIn * Follow me on Instagram * Follow me on TikTok * Follow me on Threads
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Co-Producer and Marketing Coordinator: Kayla Nelson * Production Assistant: Becki Leigh
Episode SummaryJoin me as I welcome back Amy and her daughter, Lizzie, for an insightful discussion. In this episode, we delve into Lizzie's harrowing encounter with toxic shock syndrome (TSS), exploring the severe implications and her journey to recovery. Amy shares the critical moments that led to her life-saving discovery of Lizzie's condition and her quick response. We also discuss Lizzie's candid reflections on managing her menstrual health post-TSS, the challenges she faced during her recovery, and the significant changes in her life post-illness, including the recommendation to avoid tampon use. This episode serves as an eye-opener on the crucial aspects of TSS and menstrual health awareness.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video on YouTube: https://youtu.be/F_rYxdV3Qwc
Resources* WHAT YOU NEED TO KNOW ABOUT TOXIC SHOCK SYNDROME * Removing the shame and stigma from menstruation * 5 Things You Need to Know About Common Tampon Ingredients * THE TAMPON: A HISTORY * Sisters nearly die within days of each other after using 'super plus' tampons * 5 Tampon Myths You Should NOT Believe * https://www.twitch.tv/mamadoctorjones
Days for Girls* Days for Girls * Days for Girls Holiday Gift Guide * Days for Girls NYC Chapter Instagram
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel * Follow me and send me a message on Facebook * Follow me and send me a message on LinkedIn * Follow me on Instagram * Follow me on TikTok * Follow me on Threads
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Co-Producer and Marketing Coordinator: Kayla Nelson * Production Assistant: Becki Leigh
Episode SummaryJoin us in a touching conversation with Amy and her daughter Lizzie as they share their experiences with 18-year-old Mathew, who was diagnosed with autism. Amy discusses the challenges of raising Mathew, including how eliminating certain food dyes helped reduce his aggressive behavior. Lizzie shares insights on being an older sister to a sibling with autism, highlighting the unique bond they share. This episode offers a candid look into a family's journey with autism, filled with challenges, love, and resilience.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here:https://youtu.be/NLxFbGl-0vY
Resources* Dye-Free Kids Facebook Group * Hidden Talents ABA * Marcus.org * Food Color and Autism: A Meta-Analysis * Autism Spectrum Disorder: What Every Parent Needs to Know book * The Impact of Artificial Food Dyes on Autism & ADHD * Contact Amy: atgnichols@gmail.com
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel: https://www.youtube.com/@WisdomSharedCaroleBlueweiss * Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss * Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/ * Follow me on Instagram: https://www.instagram.com/carole_blueweiss/
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Production Assistant and Marketing Coordinator: Kayla Nelson
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel * Follow me and send me a message on Facebook * Follow me and send me a message on LinkedIn * Follow me on Instagram * Follow me on TikTok * Follow me on Threads
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Co-Producer and Marketing Coordinator: Kayla Nelson * Production Assistant: Becki Leigh
EPISODE SUMMARY
This is a replay of a previously released episode, for Blindness Awareness Month. In this episode, we meet Josh Burch, a 48-year-old man who was born with Optic Nerve Hypoplasia. Josh talks about the challenges of growing up blind and shares how he navigates a world built for sighted people with the help of technology and his guide dog, Lou. We also hear more from Josh's stepmother, Julie Burch, and learn how they inspired and learned from each other, and how their relationship has changed over time.
Some learning gems from this episode: Don't pet a guide dog, (he or she needs to focus on guiding). Once out of harness, you can pet the dog; iPhones have an option called "VoiceOver" which anyone can use; If you meet a blind person, don't assume they need help, ask first; Do not spoon-feed or coddle people who are blind, they are like sighted people and just need more assistance; Support groups are great like Lighthouses for the Blind; Encourage independence and build confidence; Good manners, awareness of posture and exercise matters; Tough love sometimes requires patience but it beats sympathy.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://www.youtube.com/watch?v=SIy4DpLWE94
RESOURCES:
- Guiding Eyes for the Blind
- Rehabilitation Center for the Blind and Visually Impaired in Daytona, Florida
- JAWS, Job Access With Speech screen reader tool
- Lighthouses for the Blind - local chapters can be found across the country
- iPhone accessibility features
- Optic Nerve Hypoplasia
- 8 Everyday Items Originally Invented for People With Disabilities
PEOPLE MENTIONED:
- Anne Sullivan
FIND AND FOLLOW JOSH:
- Josh Burch: jburch73@skyrapture.com
FIND AND FOLLOW JULIE:
- Julie's Mindfulness Art Facebook Page
- Julie's Author Facebook page
- Julie's Author Website
- Subscribe to Julie's mailing list for information about upcoming books, nature, recipes, and life with Josh
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel * Follow me and send me a message on Facebook * Follow me and send me a message on LinkedIn * Follow me on Instagram * Follow me on TikTok * Follow me on Threads
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Co-Producer and Marketing Coordinator: Kayla Nelson * Production Assistant: Becki Leigh
EPISODE SUMMARY
This is a replay of a previously released episode, for Blindness Awareness Month. Julie Burch is an accomplished author (pen name: Juliet Brilee) and stepmother to Josh, who was born blind. Now 48 years old, he lives independently with his seeing-eye dog, Lou. In this episode, Julie shares what it was like to raise a blind child. She introduces us to how she helped Josh spatially map his environment, and talks about how the brain's map differs for people who have vision versus people with no vision. Julie is a mindfulness coach, and she emphasizes the importance of patience, embracing "failure," using tough love to support independence, and enhancing the senses through mindful practice.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://www.youtube.com/watch?v=8PNWizDEn30
In the next episode, Dr. Blueweiss interviews Josh, who shares his perspective on life in a world built by sighted people.
FIND AND FOLLOW JULIE
Julie's Mindfulness Art Facebook Page
https://www.facebook.com/julieburch4art
Julie's Author Facebook page
https://www.facebook.com/Jbrileeauthor
Julie's Author Website
https://julietbrilee.com/
Subscribe to Julie's mailing list for information about upcoming books, nature, recipes, and life with Josh.
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel * Follow me and send me a message on Facebook * Follow me and send me a message on LinkedIn * Follow me on Instagram * Follow me on TikTok * Follow me on Threads
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Co-Producer and Marketing Coordinator: Kayla Nelson * Production Assistant: Becki Leigh
Episode SummaryIn part 2 of my conversation with retired FBI Special Agent Aaron Weeter, we learn more about life as an FBI agent. Aaron explains how he got started, what it was like to work on high-profile cases like 9/11, the DC Sniper, and January 6th, and how he ultimately specialized in drug-related crimes for most of his career. It was fascinating to learn about how Aaron and his colleagues used informants and undercover officers to take down doctors in the opioid epidemic.
Be sure to listen to the previous episode with Aaron to learn how the opioid epidemic of the 90s spread to become the fentanyl epidemic we have today: Retired FBI Agent Reflects On Opioid Crisis
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/sDVbaz9FHbM
Related EpisodesRetired FBI Agent Reflects On Opioid Crisis
Overdose Awareness: A Sister's Tribute
Addiction to Sobriety: A Mother's Journey
Anonymous Sister
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel: https://www.youtube.com/@WisdomSharedCaroleBlueweiss * Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss * Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/caroleblueweiss/ * Follow me on Instagram: https://www.instagram.com/carole_blueweiss/ * Follow me on TikTok: https://www.tiktok.com/@wisdom_shared
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Social Media and Marketing Coordinator: Kayla Nelson * Production Intern: Cassidy Rozencwaig
Episode SummarySince 1999, more than one million people have died from a drug overdose in the United States. On International Overdose Awareness Day, we reflect on these senseless preventable deaths. Today, we hear from previous Wisdom Shared guest Anne Pratt on the loss of her brother Daniel from an accidental overdose. May this powerful personal story help spread awareness and compassion for all those affected by the devastating impact of today's out of control epidemic.
ResourcesHow to use Narcan training video: https://www.anonymoussister.com/resources
Find Naloxone near you
Fentanyl Test Strips
If you or someone you know is struggling with substance use disorder, SAMHSA's (Substance Abuse and Mental Health Services Administration) National Helpline, 1-800-662-HELP (4357), (also known as the Treatment Referral Routing Service) or TTY: 1-800-487-4889 is a confidential, free, 24-hour-a-day, 365-day-a-year, information service, in English and Spanish, for individuals and family members facing mental and/or substance use disorders. This service provides referrals to local treatment facilities, support groups, and community-based organizations. Callers can also order free publications and other information. You can also visit https://www.samhsa.gov.
Related EpisodesAddiction to Sobriety: A Mother's Journey
Anonymous Sister
Retired FBI Agent Reflects On Opioid Crisis
Anne's previous episode: A Mother Shares Her Journey of the Joys and Challenges of Raising a Child with Cerebral Palsy
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Social Media and Marketing Coordinator: Kayla Nelson * Production Intern: Cassidy Rozencwaig
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel: https://www.youtube.com/@WisdomSharedCaroleBlueweiss * Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss * Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/caroleblueweiss/ * Follow me on Instagram: https://www.instagram.com/carole_blueweiss/ * Follow me on TikTok: https://www.tiktok.com/@wisdom_shared
Episode SummaryOur last episode explored addiction from the perspective of loved ones. In this episode, we are looking at the opioid crisis from the point of view of a retired FBI agent, Aaron Weeter, who spent 25 years specializing in drug-related crimes. From his frontline perspective, we learn how the opioid epidemic of the 90s spread to become the fentanyl epidemic we have today.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/oXq6XJ_z-HI
About Aaron WeeterBeginning in 1998, Aaron served for over 23 years as a Special Agent in the Federal Bureau of Investigation's Washington, D.C. Field Office. He served for twenty years as a case agent and three years as a supervisor investigating matters primarily involving white-collar/financial crimes in the areas of healthcare fraud and prescription drug diversion and distribution. During this time, Aaron also worked on a variety of national/office-wide cases including the 9-11, D.C. Sniper and January 6th investigations among others. Aaron is a licensed Certified Public Accountant (CPA) and a Certified Fraud Examiner. He retired from the FBI in late 2021 and recently started a fraud consulting business. Much of Aaron's FBI investigative work focused on the illegal distribution of pharmaceutical narcotics and other controlled substances by physicians, pharmacists and street-level dealers. He opened his first "pill case" in early 1999 in the early stages of what would become the pill epidemic and through dozens of cases thereafter, had a window into the evolution of the pill epidemic and its influence on the current fentanyl epidemic gripping the U.S.
More to Watch and ReadChasing the Dragon: The Life of an Opiate Addict - a documentary made by the FBI & DEA
Dr. Feelgood: Dealer or Healer?- a documentary about Dr. William Hurwitz, a Virginia physician who served nearly five years in prison for drug trafficking
Anonymous Sister - a documentary where director Jamie Boyle explores her family's collision with the opioid epidemic
All the Beauty and the Bloodshed - a documentary about artist and activist Nan Goldin and her personal fight to hold the Sackler family accountable for the opioid overdose crisis
Demon Copperhead by Barbara Kingsolver - a novel that shows the devastating impact of the opioid epidemic on a young boy in Appalachia
Dopesick: Dealers, Doctors, and the Drug Company that Addicted America by Beth Macy - the definitive account of America's opioid epidemic
Raising Lazarus: Hope, Justice, and the Future of America’s Overdose Crisis by Beth Macy - a sequel to Dopesick
Dopesick - Hulu limited series remake of Beth Macy's book
Empire of Pain: The Secret History of the Sackler Dynasty by Patrick Radden Keefe - a book that describes the Sackler family and their role in the opioid epidemic
The Family That Built an Empire of Pain - article by Patrick Radden Keefe that led to the book
What Can Be Done?Words Matter - Terms to Use and Avoid When Talking About Addiction
https://www.cdc.gov/opioids/basics/fentanyl.html:
https://www.cdc.gov/drugoverdose/prevention/index.html
Fentanyl Test Strips
Find Narcan Near You
If you or someone you know is struggling with substance use disorder, SAMHSA's (Substance Abuse and Mental Health Services Administration) National Helpline, 1-800-662-HELP (4357), (also known as the Treatment Referral Routing Service) or TTY: 1-800-487-4889 is a confidential, free, 24-hour-a-day, 365-day-a-year, information service, in English and Spanish, for individuals and family members facing mental and/or substance use disorders. This service provides referrals to local treatment facilities, support groups, and community-based organizations. Callers can also order free publications and other information. You can also visit https://www.samhsa.gov.
How opioid addiction occurs - Mayo Clinic
List of Treatment Facilities and Support Groups
Drug Takeback Programs
Safe Drug Disposal
Related EpisodesAddiction to Sobriety: A Mother's Journey
Anonymous Sister
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel: https://www.youtube.com/@WisdomSharedCaroleBlueweiss * Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss * Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/caroleblueweiss/ * Follow me on Instagram: https://www.instagram.com/carole_blueweiss/
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Social Media and Marketing Coordinator: Kayla Nelson
Episode SummaryIn this episode, I'm joined by two special guests, harm reduction activist Julie Stampler and award-winning documentary filmmaker Jamie Boyle. We discuss the opioid epidemic through the frame of the incredible documentary Anonymous Sister, directed by Jamie Boyle, produced by Marilyn Ness, and executive produced by Julie Stampler. This is the story of one American family, but what happened to them could happen to any family. We learn about Julie's brother, Jonathan, who died from a heroin overdose, and how his death led Julie into her life of activism and harm reduction work. We see two different paths to managing addiction and substance abuse disorder. This is a story told by two women who watched their siblings suffer. This show is dedicated to all the siblings out there who are anonymous witnesses.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/oD0vVqw-w6w
About Anonymous SisterWhen a young woman turns to the camera for refuge, she ends up with a firsthand account of what will become the deadliest man-made epidemic in United States history. From the producers of Dick Johnson Is Dead and Summer of Soul, Anonymous Sister is two-time Emmy Award winner Jamie Boyle's chronicle of her family's collision with the opioid epidemic.
Anonymous Sister will be playing at IFC Center in New York June 2nd - 8th and Laemmle Theater in Los Angeles June 16th - 22nd, with more cities to follow.
Select screenings will be accompanied by special events and panels. For details and info about upcoming events:
- anonymoussister.com
- https://www.facebook.com/AnonymousSisterFilm
- https://www.instagram.com/anonymoussisterfilm/
- https://twitter.com/AnonSisterFilm
About Jamie BoyleJamie Boyle is a two-time Emmy Award winning documentary filmmaker. Her work has played at Sundance, Tribeca, and SXSW. In 2019, she was part of the inaugural Sundance Talent Forum & Catalyst Lab and on DOC NYC’s 40 Under 40 list. She is the writer and editor of BREAKING THE NEWS, premiering Tribeca Film Festival in June 2023. She is the director and editor of ANONYMOUS SISTER, a personal feature documentary coming to theaters in summer 2023 and produced by Big Mouth Productions (DICK JOHNSON IS DEAD, CAMERAPERSON) and Vulcan Productions (SUMMER OF SOUL, THE REASON I JUMP). She was the editor, producer, and cinematographer of JACKSON (Showtime), winner of the 2018 Emmy® Award. She was the editor of TRANS IN AMERICA: TEXAS STRONG, winner of the 2019 Emmy® for Outstanding Short Documentary and two Webby Awards. TEXAS STRONG premiered at SXSW and launched on them. She was the associate editor and production manager of E-TEAM (Netflix), which won the 2014 Sundance Cinematography Award and was nominated for two News & Documentary Emmys®, including Best Documentary. She was the director, cinematographer, and editor of the short documentary TAKE A VOTE, which premiered at DOC NYC in 2020. She was the in-house editor for The American Civil Liberties Union and Human Rights Watch. She taught at the Bronx Documentary Center, as a guest lecturer at Columbia University, and served as a judge for the News & Documentary Emmy Awards.
https://www.jamielboyle.com/
About Julie StamplerJulie Stampler is a voiceover actress and harm reduction activist who is a National Harm Reduction Coalition Board Member. Julie's harm reduction advocacy work aims to help people who use drugs stay alive rather than pushing for abstinence-only approaches. She advocates for the importance of overdose prevention programs, training people on when and how to use and distribute naloxone/Narcan, and advocating for overdose prevention centers that focus on keeping people alive with access to social service resources. Julie's life-saving work stems from her brother Jonathan's untimely death from a heroin overdose 20 years ago. In a twist of irony, her stepfather Jack Fishman was the scientist credited with inventing naloxone which can reverse an overdose from heroin, fentanyl, and prescription opioid medications—when given in time.
https://juliestampler.com/
From This Episode* How to use Narcan training video: https://www.anonymoussister.com/resources * Find Naloxone near you * Julie's stepfather Jack Fishman * The Drug That Saves Lives Even if It's Never Used * https://dancesafe.org/ - site Julie mentions where you can order fentanyl test strips and drug testing kits * Marilyn Ness * 5 myths about using Suboxone to treat opiate addiction * DEA takes aggressive stance toward pharmacies trying to dispense addiction medicine * About Xylazine
Find and Follow Carole and Wisdom Shared:* https://www.caroleblueweiss.com/ * Subscribe to my YouTube channel: https://www.youtube.com/@WisdomSharedCaroleBlueweiss * Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss * Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/ * Follow me on Instagram: https://www.instagram.com/carole_blueweiss/
The Wisdom Shared Team* Audio Engineering by Steve Heatherington of Good Podcasting Works * Social Media and Marketing Coordinator: Kayla Nelson
Episode Summary
Melissa Conrey shares her story of living with drug and alcohol addiction and now, sobriety. A single mom of two, she worries about her children who have been exposed to so much. She went back to school to earn her degrees and is now a registered dietician. Melissa speaks openly about her challenges and her victories.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/yTUuE_L-L8g
From This Episode
- A.A. (Alcoholics Anonymous): https://www.aa.org/
- Al-Anon: https://al-anon.org/
- Melissa's Roller Derby Team: https://centralcoastrollerderby.squarespace.com/
Find and Follow Melissa:
- Instagram: @simplyme_rd
- email: melissadae2001@yahoo.com
Find and Follow Carole and Wisdom Shared:
- https://www.caroleblueweiss.com/
- Subscribe to my YouTube channel: https://www.youtube.com/@WisdomSharedCaroleBlueweiss
- Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss
- Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/
- Follow me on Instagram: https://www.instagram.com/carole_blueweiss/
The Wisdom Shared Team
- Audio Engineering by Steve Heatherington of Good Podcasting Works
- Social Media and Marketing Coordinator: Kayla Nelson
Episode Summary
This episode features mother and daughter Bobbie and Angela Singletary. This dynamic duo shares their story, full of hardship, resilience, joy, love, and support. Bobbie, Angela, and two of Angela's kids all have achondroplasia, a form of dwarfism, as did Angela's late sister Cindy. Listen how Cindy’s life at 33 could not be saved despite the huge sacrifices made by her mom and sister. We will hear how the Medicaid system failed them and how in spite of life challenges, including discrimination, systemic inequity, and personal struggles with alcohol, these women continue to advocate for others.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/1qFpEPqzdD0
About Angela and Bobbie
- Angela's Podcast: A Little Perspective
- Angela's Website
- The book featuring Bobbie's essay: A Little Perspective: REAL Stories of Little Ladies
- Documentary EveryBODY Matters featuring Angela
- Angela's interview with NPR about the treatment for achondroplasia: https://www.bodiespodcast.com/resource-pages/not-your-average
From This Episode
- Tulane University
- Special Delivery From Pregnancy to Toddlerhood
- Mindy Silva - Wired on Development
- The Americans with Disabilities Act (ADA)
- Dwarfism: Raising a Little Person, Wisdom Shared episode with Audrey Curwin
- Dwarfism: Life as a Little Person, Wisdom Shared episode with Jillian Curwin
- Dwarfism: A Mother-Daughter Conversation, Wisdom Shared episode with Audrey and Jillian Curwin
Find and Follow Carole and Wisdom Shared:
- https://www.caroleblueweiss.com/
- Subscribe to my YouTube channel: https://www.youtube.com/@WisdomSharedCaroleBlueweiss
- Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss
- Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/
- Follow me on Instagram: https://www.instagram.com/carole_blueweiss/
The Wisdom Shared Team
- Audio Engineering by Steve Heatherington of Good Podcasting Works
- Social Media and Marketing Coordinator: Kayla Nelson
EPISODE SUMMARY
Lisa Greer is a mother of five, a former executive and business owner, a convener of charitable events, and the author of Philanthropy Revolution. We discuss her childrens' diagnoses with cancer and adolescent-onset epilepsy and how that affected the whole family. Lisa explains how transparency fosters trust, something that applies to the worlds of charitable giving, healthcare, and parenting. There are so many impactful takeaways from this wide-ranging conversation with Lisa, as the wisdom she has gained in her variety of roles interconnect in sometimes surprising ways.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/KE1KrICHEPM
ABOUT LISA GREER
- Lisa's website: https://www.lisagreer.com/
- Lisa's book: Philanthropy Revolution: How to Inspire Donors, Build Relationships, and Make a Difference
- Lisa's blog newsletter: https://philanthropy451.substack.com/
FROM THIS EPISODE
- myFace: https://www.myface.org/
- Epilepsy Foundation: https://www.epilepsy.com/
- Crohn's & Colitis Foundation: https://www.crohnscolitisfoundation.org/
- The Feldenkrais Method
- Stacy Barrows is a Doctor of Physical Therapy, Certified Feldenkrais Practitioner, PMA-National Pilates Certified Teacher, and creator of the Smartroller. Visithttps://www.smartroller.net/ and https://smartsomaticsolutions.com/
- Wonder by R.J. Palacio
- Adolescent Medicine is now a subspecialty but as Lisa has experienced with her kids, it's not available everywhere.
Find and Follow Carole and Wisdom Shared:
- https://www.caroleblueweiss.com/
- Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss
- Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/
- Follow me on Instagram: https://www.instagram.com/carole_blueweiss/
The Wisdom Shared Team
- Audio Engineering by Steve Heatherington of Good Podcasting Works
- Social Media and Marketing Coordinator: Kayla Nelson
Episode Summary
In this episode, we meet Patty Braendel, a special education teacher who is an adoptive mom, a birth mom, and also a foster mom. We hear about her journey to parenthood with all its ups and downs and learn how her experiences as a parent have helped her work in special education.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/6gINmxyiQ5o
Resources
- Foster the Family
- Florida Department of Children and Families
- Empowered to Connect
Find and Follow Patty
- Email Patty: pbraendel@gmail.com
Find and Follow Carole and Wisdom Shared
- https://www.caroleblueweiss.com/
- Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss
- Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/
- Follow me on Instagram: https://www.instagram.com/carole_blueweiss/
EPISODE SUMMARY
Kathryn Paylor-Bent has a lot of wisdom to share and we cover a lot of ground in this conversation. We talk about her experiences as a disabled woman, wheelchair user, and the CEO of two successful businesses. She uses her disability as inspiration for her successful career as an adaptive fashion designer and as a consultant to other organizations.
She shares her experiences with ableism, including medical and digital ableism like shadow banning on social media and examples from her personal life. In light of some of these negative experiences, she also shares solutions as an advocate and suggests how we can better understand the disability community. Another important part of Kathryn's story is being a mother to Tom, her son with autism and mental health challenges. She shares her vision for Tom's future as well as the future of other young people with disabilities through her business Seated Sewing.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/rpJslXjawTk
FROM THIS EPISODE + RESOURCES
- Kathryn describes ableism by saying, "Ableism is where people who are without disability assume they know what is right for us." She describes several examples, including digital ableism and medical ableism. Learn more about ableism here.
- Tommy Hilfiger Adaptive
- Dogs For Good
- Functional Neurological Disorder (FND)
- North East Autism Society: the charity behind the school Tom attends
- National Autistic Society
- Open Style Lab
- Pointing Out Meaningful Representation for Children With Disabilities
FIND AND FOLLOW KATHRYN
- Seated Sewing
- Consult Seated
- Kathryn's LinkedIn
Find and Follow Carole and Wisdom Shared:
- https://www.caroleblueweiss.com/
- Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss
- Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/
- Follow me on Instagram: https://www.instagram.com/carole_blueweiss/
Episode Summary:
In this episode, we meet Dom Raban, a designer, software developer, and father of Issy. Issy underwent cancer treatment at age 13. While Issy is now a young adult and cancer-free, the lack of information given to Issy during her treatments prompted her father to create a child-centered app called Xploro. This amazing app was designed to improve the health literacy of children, to decrease procedural anxiety, and to improve the hospital experience for all children and their families.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/5evWmZZ4BS8
From This Episode:
- About Ewing Sarcoma
- Study showing Xploro reduces anxiety about hospital procedures: https://www.healthtechdigital.com/new-study-shows-xploro-app-reduces-procedural-anxiety-in-children/
Find and Follow Dom:
- Dom's LinkedIn profile: https://linkedin.com/in/domraban
- Xploro: https://xploro.health/
- Email Dom: dom@xploro.health
- Dom's Twitter: @DomRaban
- Dom's Company's Twitter: @CorporationPop
Find and Follow Carole and Wisdom Shared:
- https://www.caroleblueweiss.com/
- Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss
- Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/
- Follow me on Instagram: https://www.instagram.com/carole_blueweiss/
Eleven-year-old Easton and his mother Jennifer are a great son-mom team. In this episode, we will hear from both and learn about support dogs, supercars, playgrounds, pregnancy, birth, and spina bifida.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/yVwx-zwqNhM
FIND AND FOLLOW JENNIFER:
- crofootjennifer@gmail.com
ABOUT SPINA BIFIDA:
- https://www.spinabifidaassociation.org/
- https://redefiningspinabifida.org/
FROM THIS EPISODE:
- Learn about the inclusive playground Jennifer spearheaded with her local Rotary Club: https://www.rotaryplaygrounds.org/
- About Ethan's favorite sport, Wheelchair Motocross or WCMX: https://en.wikipedia.org/wiki/WCMX_(sport)
George Estreich is an award-winning writer whose work includes poetry, memoir, and non-fiction. He is also a musician who plays with the band Mule On Fire. In addition to writing and music. George is an activist, storyteller, husband, and father to Ellie and Laura. George talks about raising his daughter, Laura, who was born with Down syndrome. And then he talks about biotechnology, disability, and the stories we tell ourselves. He discusses how all people are more than a single identity and not only are stereotypes untrue, but they are also incomplete.
For more information about Down syndrome, see here.
Find and follow George: https://georgeestreich.com/
Listen to Laura's episode here: https://wisdom-shared.simplecast.com/episodes/laura-e
FROM THIS EPISODE:
The Shape of the Eye by George Estreich
Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves by George Estreich
Unexpected: Parenting, Prenatal Testing, and Down Syndrome by Alison Piepmeier with George Estreich and Rachel Adams
No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro
What Can a Body Do?: How We Meet the Built World by Sara Hendren
Alison Piepmeier
Unified Sports - Special Olympics
Individuals with Disabilities Education Act (IDEA)
Report from the Hastings Center about the marketing of NIPT: Bias and Inaccuracy in Marketing Noninvasive Prenatal Tests
Video with transcript: https://youtu.be/Su9LTiwiyGQ
Laura, a young woman with Down syndrome talks about her life and goals.
For more information about Down syndrome, see here.
FROM THIS EPISODE:
DEC - Disability Equity Center
WINGS Transition Program
Unified Sports - Special Olympics
Oregon Health & Science University
George Estreich
BOOK:
The Shape of the Eye by George Estreich
RESOURCES:
- Guiding Eyes for the Blind
- Rehabilitation Center for the Blind and Visually Impaired in Daytona, Florida
- JAWS, Job Access With Speech screen reader tool
- Lighthouses for the Blind - local chapters can be found across the country
- iPhone accessibility features
- Optic Nerve Hypoplasia
- 8 Everyday Items Originally Invented for People With Disabilities
PEOPLE MENTIONED:
- Anne Sullivan
FIND AND FOLLOW JOSH:
- Josh Burch: jburch73@skyrapture.com
FIND AND FOLLOW JULIE:
- Julie's Mindfulness Art Facebook Page
- Julie's Author Facebook page
- Julie's Author Website
- Subscribe to Julie's mailing list for information about upcoming books, nature, recipes, and life with Josh
FIND AND FOLLOW JULIE
Julie's Mindfulness Art Facebook Page
https://www.facebook.com/julieburch4art
Julie's Author Facebook page
https://www.facebook.com/Jbrileeauthor
Julie's Author Website
https://julietbrilee.com/
Subscribe to Julie's mailing list for information about upcoming books, nature, recipes, and life with Josh.
Dwarf Tossing
https://en.wikipedia.org/wiki/Dwarf-tossing
Recent Dinklage/Disney Statements onSnow White and the Seven Dwarfs
https://www.npr.org/2022/01/26/1075761231/peter-dinklage-disney
RESOURCES
Books
Far from the Tree: Parents, Children and the Search for Identity by Andrew Solomon
http://andrewsolomon.com/books/far-from-the-tree/
Thinking Big: The Story of a Young Dwarf , by Susan Kuklin
https://www.amazon.com/Thinking-Big-Story-Young-Dwarf/dp/0688058264
The Missing Piece by Shel Silverstein– (animated)
https://www.youtube.com/watch?v=4gEjCJOzqXc
The Cracked Pot Children’s Story
https://alltimeshortstories.com/life-the-cracked-pot/
Associations
Little People of America
https://www.lpaonline.org
American Association of People with Disabilities
https://www.aapd.com
People
Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rights
https://www.fordfoundation.org/about/people/rebecca-cokley/
Judy Heumann, Lifelong Advocate for the rights of disabled people
https://judithheumann.com
FOLLOW AND CONTACT JILLIAN
Podcast:https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385
Instagram:
@jill_ilana, @alwayslookingup.podcast
Website:
https://www.jillianilana.com
Email:
alwayslookingup227@gmail.com
FROM THIS EPISODE
Achondroplasia
Achondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means "without cartilage formation." https://medlineplus.gov/genetics/condition/achondroplasia/
Jillian’s Disney Project (includes photos)
https://cripplemedia.com/waiting-for-my-disney-princess/
Thinking Big: The Story of a Young DwarfChildren’s Book
https://www.amazon.com/Thinking-Big-Story-Young-Dwarf/dp/0688058264
Little People, Big World TV Show
https://go.tlc.com/show/little-people-big-world-tlc
Nancy Volpe Beringer: Fashion Design for Sustainability and Adaptability
https://www.nancyvolpeberinger.com
Little People of America
https://www.lpaonline.org
American Association of People with Disabilities
https://www.aapd.com
Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rights
https://www.fordfoundation.org/about/people/rebecca-cokley/
Maria Town, American Association of People with Disabilities, President and CEO
https://www.aapd.com/about/maria-town/
Wigs and Wishes
https://www.wigsandwishes.org
FOLLOW AND CONTACT JILLIAN
Podcast: https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385
Instagram:
@jill_ilana, @alwayslookingup.podcast
Website:
https://www.jillianilana.com
Email:
alwayslookingup227@gmail.com
FROM THIS EPISODE
Osteogenesis Imperfecta
Osteogenesis imperfecta (OI) is an inherited (genetic) bone disorder that is present at birth. It is also known as brittle bone disease.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/osteogenesis-imperfecta
Skeletal Displaysia
Skeletal dysplasia is the medical term for a group of about 400 conditions that affect bone development, neurological function, and cartilage growth, including its most common form, achondroplasia.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/skeletal-dysplasia
Achondroplasia
Achondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means "without cartilage formation." https://medlineplus.gov/genetics/condition/achondroplasia/
Little People of America
https://www.lpaonline.org
The Missing Piece – Animated Shel Silverstein:
https://www.youtube.com/watch?v=4gEjCJOzqXc
The Cracked Pot Children’s Story
https://alltimeshortstories.com/life-the-cracked-pot/
Crip Camp: The Film
https://www.youtube.com/watch?v=XRrIs22plz0
Crip Camp: The Revolution
https://cripcamp.com
FINDING JILLIAN
Podcast: https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385
Instagram:@jill_ilana, @alwayslookingup.podcast
Website:https://www.jillianilana.com
Email:alwayslookingup227@gmail.com
Kathy Cocks, Podcaster and Interviewer
Kathy has been a registered nurse for over 30 years, working in intensive care, with disabled school children, dialysis and now in the community with the geriatric population. She works with families and their loved ones to find the right solutions for their situation, and maintains an active network of partners to help navigate the eldercare journey.
Knowledge for Caregivers Podcast
https://www.kathysconsulting.com/podcast
Contact Kathy:
Website: https://www.kathysconsulting.com
Email: info@kathysconsulting.com
School of Life Book Collection:
https://www.theschooloflife.com
Contact Carole Blueweiss:
Website: caroleblueweiss.com
Email: clevpt@gmail.com
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 13, Anorexia: A Father's Perspective", Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
Mentioned in this Episode
TREATMENTS & TREATMENT PROGRAMS
Family-Based Treatment
A type of therapy which involves all family members in treatment of the individual with the disorder. Currently considered the gold standard approach for addressing anorexia nervosa. Views food as medicine, and places responsibility for all meal decisions, shopping, and preparation with caretaker in early phases of this modality.
https://www.feast-ed.org/what-is-family-based-treatment/
FAMILY THERAPIST
Amy Begel
https://www.amybegel.com/
ADOLESCENT MEDICINE EATING DISORDER SPECIALIST
Dr. Jennifer Northridge
https://doctors.hackensackmeridianhealth.org/provider/Jennifer+L.+Northridge/1317171
TREATMENT FACILITIES MENTIONED IN THIS EPISODE
Princeton Center for Eating Disorders at Penn Medicine
https://www.princetonhcs.org/care-services/center-for-eating-disorders-care
Hidden River, Chester NJ
https://hiddenriverhealing.com
LEVELS OF CARE
Inpatient: patient acutely ill, and requires medical stabilization.
Residential: highly structured live-in environment for medically stable patients; offers 24X7 support.
Partial Hospitalization (PHP): a step-down treatment-based day program; offers recovery-based therapies and support along with opportunities to practice recovery outside of program.
Intensive Outpatient (IOP): flexible treatment program; assumes patient is able to participate in school, work, and so on. Treatment team (therapist, nutritionist) providing regular support.
FOLLOW IVANA
Facebook: @mauimovementlessons
LinkedIn: https://www.linkedin.com/in/ivana-gadient-8b21a536/
CONTACT VERENA
email:vera9nyc@yahoo.com
RESOURCES recommended by Ivana
"Wheelchairs are a HUGE conversation. It is best to create a trusted, knowledgable and openminded team that you hand pick to help you successfully seat your loved one"
https://aci.health.nsw.gov.au/networks/spinal-cord-injury/spinal-seating/module-6/wheelchair-seating-a-complex-puzzle
TALK TOOLS: for finding a therapist, and continuing education.
https://talktools.com
FEEDING MATTERS: Parent Support Network
"Feeding Matters is a great organization, started by two moms. They pursued chasing the CDC for a stand alone diagnosis and code called PFD pediatric feeding disorder. They dedicated five years to this and it came to pass this year. They have a lot of free resources and supports for parents."
https://www.feedingmatters.org
JABBERMOUTHS: Speech, Oral-Motor, and Feeding Therapy
"This is Jewel's latest SLP who is amazing! I highly recommend Jenn, she is licensed in HI and AZ and does Zoom lessons. Highly skilled, highly educated, great instinct, grew up around disability and very comfortable around our families. She can teach premature babies to latch on to both breast and bottle!"
https://jabbermouths.com/
THERAPISTS AND THERAPIES in episode
ARLENE WARD is the owner of Genesis Rehabilitation Ltd., a vocational rehabilitation and disability management company based in Nanaimo, BC. Their goal is to keep workers at work. She is also an Adjunct Professor at the University of Northern BC Canada.
https://www.linkedin.com/in/arleneatgenesis/
JUDITH HEUMANN is an internationally recognized disability advocate who served in the Clinton and Obama Administration and was a Senior Fellow at the Ford Foundation.
https://judithheumann.com
KAREN ERICKSON, PH.D. is the Director of the Center for Literacy and Disability Studies, a Professor in the Division of Speech and Hearing Sciences, and the Yoder Distinguished Professor in the Department of Allied Health Sciences, School of Medicine at the University of North Carolina at Chapel Hill.
https://www.med.unc.edu/ahs/clds/directory/karen-erickson/
JENNIFER BUCK, MA, CCC-SLP, owner of Jabbermouths Therapy, is a licensed and certified Speech-Language Pathologist with over a decade of experience in working with individuals with disabilities.
https://jabbermouths.com
NEUROMOVEMENT THERAPY: Anat Baniel and NeuroMovement® (ABMN®)
Anat Baniel, a student of Moshe Feldenkrais, developed and evolved NeuroMovement® from 30+ years of experience with thousands of clients using practical applications of brain plasticity principles. The Anat Baniel Method® approach is founded in neuroscience and the biodynamics of the human body, and utilizes movement and the 9 Essentials to create conditions for the brain to wake up and upgrade its own functioning.
Read more about the Nine Essentials:
https://www.anatbanielmethod.com/about/neuromovement/neuromovement-and-9-essentials
HIPPOTHERAPY: an approach to physical therapy where the patient rides horses in order to address physical health.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5175116/
AYSO VIP: provides a quality soccer experience for individuals whose physical or mental disabilities.
https://ayso.org/play/vip/
PRODUCTS
KINDERPACK produces baby carriers that are small-batch made, exclusively in the USA in sizes to fit infants, toddlers, and even preschool sized children.
https://mykinderpack.com
NEUROMOVEMENT THERAPY: Anat Baniel and NeuroMovement® (ABMN®)
Anat Baniel, a student of Moshe Feldenkrais, developed and evolved NeuroMovement® from 30+ years of experience with thousands of clients using practical applications of brain plasticity principles. The Anat Baniel Method® approach is founded in neuroscience and the biodynamics of the human body, and utilizes movement and the 9 Essentials to create conditions for the brain to wake up and upgrade its own functioning.
Read more about the Nine Essentials:
https://www.anatbanielmethod.com/about/neuromovement/neuromovement-and-9-essentials
THE PODCASTING WORKSHOP WITH SETH GODIN: how I learned to podcast!
https://akimbo.com/thepodcastingworkshop
Select Quotes
You are welcome to share the wisdom from this episode. Please be sure to credit: “_Ep. 11, JoAnne Robb, Courtesy of Wisdom Shared Podcast with Carole Blueweiss._”
“When we first were diagnosed—you'll see that I'm using the word ‘we’; I think of [Type 1] as a family disease in a lot of ways, especially when kids are young. It's too much for the kids to carry by themselves.”
“When I thought about what would be hard for a kid around diabetes management, I would have thought of the shots and the needles and the pokes, but really what's hard is having this constant numbers game.”
“There's a lot of anxiety about being a parent of a kid with Type 1. And I feel like some of the information out there kind of heightens that anxiety. I feel like my contribution to this dialogue is to say, there's a way to do this more calmly.”
"Pump supplies are really expensive, CGM is really expensive, insulin is really expensive."
“How we approach [Type 1 Diabetes] emotionally truly makes a difference in our relationship to the disease…and ultimately in our children's relationship to the disease.”
"And the other thing that 's been completely invaluable, which I could not pitch more strongly, is diabetes camp...we went to family camp and we gained a lot of community, but also a lot of information.
“Rstricting food too much can have a mental health boomerang effect that you really don’t want.”
"This is not just a medical condition, even though it seems like it is, It's also an emotional condition...and a lowercase trauma."
"I do think that the way that parents talk about this trauma of diabetes makes a difference in the child's relationship to the disease."
“Learning Diabetes is like drinking from a fire hose.”
“The Diabetes community in general is very generous about wanting to help each other because we all know exactly what we're going through.”
“My biggest piece of advice is that you will learn this and your child will be okay and you will be okay. And that doesn't mean everything will be good all the time, but this is survivable.”
Resources from this Episode
SUPPORT RESOURCES
- SWEET TALK: JoAnne’s parenting support site
www.diabetessweettalk.com - BRAVE BUDDIES, an online listserv which supports parents of kids with Type 1
https://groups.io/g/BraveBuddies - DIABETES CONNECTIONS PODCAST with Stacey Simms
https://diabetes-connections.com
CAMPS
- https://dyf.org
JoAnne writes, “My personal attachment is to DYF, which is local to the Bay Area and has an amazing camp, for kids and kids with their families, in Kings Canyon National Park.” - Camp Sweeney in Texas
https://campsweeney.org - Camp Kudzu in Georgia
https://www.campkudzu.org - Clara Barton & Camp Joslin Resident Camps in Massachusetts
https://www.bartoncenter.org/programs/resident-camps/ - Camp Morris in North Carolina
https://www.thedfc.org/campmorris
LEARN MORE ABOUT THE HIGH PRICE OF INSULIN
- https://www.rand.org/news/press/2020/10/06.html](https://www.rand.org/news/press/2020/10/06.html
- https://www.rand.org/blog/rand-review/2021/01/the-astronomical-price-of-insulin-hurts-american-families.html
You are welcome to share the wisdom from this episode. Please be sure to credit: “_Ep. 10, Ariana Speyer, Courtesy of Wisdom Shared Podcast with Carole Blueweiss._”
In my conversation with Ariana, we covered a lot of ground. Here are some of the highlights.
-
Parenting a child with special needs in some ways prepared Ariana and her husband for the COVID-19 pandemic, “Because risk benefit analysis is something we've been very used to doing since my daughter was very little, and that's something people are grappling with a lot of: Is this worth it? Does this make sense? Is the benefit worth the risk? You know, all of those questions we have to ask ourselves now all the time we were already pretty used to asking ourselves, like, is it worth it to have an MRI?”
-
We discuss labels, and how the bureaucratic drive to quantify every special needs child is an ongoing challenge for parents. “If I were to talk about her as a human, as somebody that I love, I would say she's silly. She loves to dance. She's nine years old. She enjoys all kinds of music and hanging out with her grandparents and watching movies. If I was going to talk about her labels, I would say that she's non-ambulatory, non-verbal, and she has multiple disabilities.”
-
Bedside manner isn’t something every doctor is trained in, but it can make all the difference. “Ideally, a doctor will come with a certain amount of positivity and kind of connectedness. That makes you feel safe and like you're working together collaboratively to figure out the next best thing.”
-
The Anat Baniel Method, or ABM Method, provided a transformational, movement-based way of working with Calliope and a new career and community for Ariana. “From the very beginning, I just felt a visceral response to the ABM approach, which is so gentle. And so hard to describe—giving Calliope movement experiences that she wouldn't have on her own in a way that would develop her own potential.”
5. In ABM, resting is part of learning. “Rest is so essential to how ABM operates in every movement lesson. There's so much resting and that's a time when you can kind of notice differences and noticing differences in our work is the fundamental unit of learning. So having intensive practice time, and then resting in between to see what happens with how the system takes that information in is an interesting model. And it's been shown to work pretty powerfully.”
6. It’s hard not to compare your neurodiverse child’s development to “typical” children. “Every birthday was incredibly painful and the uncertainty felt more overwhelming than it does now. There's something to be said just for the passage of time and it not being so fresh, but…there's always going to be grief.”
- Having a community of other special needs parents can be really good medicine. “The support of that community is essential for mitigating or at least bonding over all of these challenges so that they feel less isolating and also less scary.”
8. I always ask parents who I interview how they take care of themselves. For Ariana, it’s a combination: “ABM movement lessons saved my sanity and my body during the pandemic. I've become very dependent on them in a way that I hadn't anticipated would be possible. Going for walks has been another thing that I've found incredibly therapeutic. And then other than that, you know, trashy TV, ice cream, and beer.”
TERMS, TREATMENT MODALITIES, and RESOURCES in this EPISODE
ARIANA SPEYER
https://www.arianaspeyer.com
ANAT BANIEL AND NEUROMOVEMENT®
https://www.anatbanielmethod.com
EMDR
https://www.emdr.com
EQUINE THERAPY
https://www.goodtherapy.org/learn-about-therapy/types/equine-assisted-therapy
FRUIT-EZE
https://www.fruiteze.com
MUSIC THERAPY
https://www.musictherapy.org
SUZANNE MORRIS, Speech Therapist, Virginia
https://www.new-vis.com
STURGE-WEBER SYNDROME
https://rarediseases.info.nih.gov/diseases/7706/sturge-weber-syndrome
THE WORLD’S BIGGEST PIANO MAT by SMART PLANET
Search for this product online and purchase from your preferred retailer.
RESOURCES MENTIONED IN THIS EPISODE
Dravet Syndrome (aka “severe myoclonic epilepsy of infancy”)
https://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome
https://www.dravetfoundation.org
Chronic Fatigue Recovery Program: ANS Rewire
https://ansrewire.com/
Simon’s Podcast: Turning the Tables
https://www.podpage.com/turning-the-tables/
Simon’s website
https://www.brandwithsimon.com/
SIMON'S RECOMMENDED BOOKS
A New Earth by Ekhart Tolle
The Surrender Experiment by Michael A Singer
EXCERPTS FROM THE INTERVIEW
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 9, Simon Ratcliffe, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
It isn't a straight line to recovery from Chronic Fatigue Syndrome
We're in the middle of COVID right now. There are many people experiencing very different symptoms and no one has the answer.
To get through a chronic illness, you have to completely reframe what the idea of recovery is.
It takes a long time for your brain to recondition itself or retrain itself around positive thoughts.
Every time I had a negative thought, I would reframe it in my head.
It was clear that a developmental delay would mean that she would need in a special school.
Lot of kids with conditions have a lot of potential, but because of the resources needed to bring that out in a child, they end up settling for good average.
Education is more geared around helping with independence, which is fine, but a lot of children like Francesca will not be able to live an independent life.
People with special needs, need to be categorized as important as any other diverse group.
Recognize that the situation you are in, if you have a child with special needs, puts much greater pressure on you.
We need to see individuals not labels.
It took the chronic fatigue to enable me to completely re reboot my mental state, my life, my priorities, my thinking.
Why don't we live life with rose-tinted spectacles on? Why is it a good idea to be painfully realistic about everything?
Rosemary Bushey currently lives in New Hampshire with her husband and two daughters, Lauren 16 and Amelia 13. She is a 49-year-old runner, coach, and vegan Instagram influencer. Rosemary was born in Columbia, South America and has lived in New York for most of her life. She is currently completing a master’s degree to work as a bilingual Clinical Mental Health Counselor. She is pursuing this degree because her older daughter was diagnosed with Obsessive-Compulsive Disorder (OCD) at age 14. Rosemary has always been passionate about food, fitness, and the body/mind connection. Two years ago, she adopted a vegan lifestyle, and is avidly exploring the connection between mental health and nutrition. She shares vegan recipes and gorgeous photos of the food she has prepared on her Instagram page, @simplyveggielicious. Lauren loves to write, draw, and sing.
https://www.instagram.com/simplyveggielicious/
Song credit: "idontwannabeyouanymore" by Billie Eilish, sung by Lauren Bushey
RESOURCES MENTIONED IN THIS EPISODE
FOUNDATIONS
International OCD Foundation
https://iocdf.org
TREATMENT FACILITIES
Bradley Hospital
https://www.lifespan.org/centers-services/intensive-program-obsessive-compulsive-disorder
Rogers Hospital
https://rogersbh.org
McLean Hospital
https://www.mcleanhospital.org
HOUSING FOR FAMILIES
Ronald McDonald House
https://www.rmhc.org
APPROACHES
Integrative Medicine
- https://www.drweil.com/health-wellness/balanced-living/meet-dr-weil/what-is-integrative-medicine/
- https://www.mayoclinic.org/tests-procedures/complementary-alternative-medicine/about/pac-20393581
- https://health.usnews.com/health-conditions/heart-health/integrative-medicine/overview
Cognitive Behavioral Therapy
- https://www.apa.org/ptsd-guideline/patients-and-families/cognitive-behavioral
- https://www.mayoclinic.org/tests-procedures/cognitive-behavioral-therapy/about/pac-20384610
- https://www.healthline.com/health/cognitive-behavioral-therapy
Exposure Therapy
- https://www.apa.org/ptsd-guideline/patients-and-families/exposure-therapy
- https://www.goodtherapy.org/learn-about-therapy/types/exposure-therapy
- https://www.mayoclinic.org/medical-professionals/psychiatry-psychology/news/exposure-therapy-effective-for-pediatric-anxiety-and-ocd/mac-20429918
EXCERPTS FROM THE INTERVIEW
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 8, Rosemary Bushey, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.
QUOTES FROM LAUREN:
I always struggled with my OCD, so I always knew something was wrong, but it was so normal for me that I was kind of used to it
OCD feeds off of stress. So whenever I'm stressed out about something, the OCD just gets much worse.
I always had urges to ritualize. And when I felt uncomfortable, I'd have to fix things a certain way.
I had these fears of my family dying. If I didn't move something a certain way in my room, I couldn't leave my room until I fixed everything a certain way, which took a while.
For the kids that are struggling with this, you know, trust your parents, they're trying to help you
You have to help yourself and you have to work towards bettering yourself and you can't give up.
Stop refusing to take other people's help. I was refusing to take my medicine because I was too scared. Even the smallest steps can make such a big difference. You have to think of the future you want for yourself. You have to think about how it's going to help you in the end. It might hurt now, but push yourself.
It gives you more power over your mental illness by feeling free to talk about it with other people, like to be able to learn about it and inform others about it, and really just know everything about what you're going through.
I feel like the foods that are in the vegan cuisine are much better for your mental health.
QUOTES FROM ROSEMARY:
When she was diagnosed with OCD, I had to jump through so many hoops in order to find help.
A lot of her OCD started manifesting in the way her shoes needed to be in certain way.
We had no clue that we were dealing with OCD… it was exhausting.
She would come home and do homework for hours and hours in a way that wasn't normal. She kept erasing. If a letter wasn't completely perfect, she had to erase it and do it again.
I kept seeing the compulsions but I didn't see the obsessions. The obsessions were hidden.
As parents, the most difficult thing we had to deal with was feeling guilty. The feeling of guilt because I kept saying, “Oh my God, how could I ignore the signs?” I knew they were there, but she was functional. And all her doctors said, “there's no way you could have known. There's no way anybody could have known she had OCD,” but I kept blaming myself and saying, “Oh my God, I wish I would have found help before.”
She was looking for me to repeat the same phrase in the same tone of voice exactly the same way I said it before. There were times that she needed to repeat or make me repeat things three times or five times.
There was no way anybody could communicate with her. There was no conversation, no communication.
She couldn't dress herself. She couldn't choose what to put on. She was overwhelmed by choosing what to wear. And then it got to a point where she couldn't help herself dress. She would be very stiff and we would have to dress her, but she couldn't help. She would scream and get into a panic and anxiety because she wanted her pants put on a certain way. But she couldn't move her legs. She had to be stiff. It was extremely weird, bizarre behavior. Then she couldn't brush her teeth because she wasn't supposed to move her arm.
For Hispanic people, it is a huge stigma mental illness. They don't talk about mental illness. In this country too, there's a lot of stigma related to mental illness.
Last year, I put her basically on a plant-based diet and its helping her and she feels better. She feels good about what she's putting in her body.
She is so mature and so knowledgeable about her disorder. It really makes me proud.
My beliefs were aligned with my nutrition, with my choices.
As a parent, and I could say to any parent, we are the best advocates for our children.
Just knowing other parents are going through the same or similar situations can be very comforting and can help a lot.
ABOUT BERIL TOKCAN
After studying graphic design in Milan and visual communication in Sydney respectively, Beril Tokcan returned to her homeland Turkey in 2003 and founded her design studio in Istanbul.
She came across the Anat Baniel Method® NeuroMovement (ABMNM) in 2012, while in search for a method to help her son, who was diagnosed with PVL /CP due to premature birth.
She completed the ABMNM Professional Training in 2015 and consecutively all the ABMNM Mastery Programs (for Children with Special Needs, for Vitality and Anti-Aging, and for High Performers). She also completed Kids Yoga, Yoga Therapy and Jeremy Krauss Approach trainings and participates in the ABMNM Professional Trainings as an assistant.
She works with children and adults at her practise in Istanbul, offering private lessons, group classes and workshops, with the mission of transforming the impossible into possibie and making positive changes in people’s lives.
Beril is the author of ‘I Am Free Now’.
www.beriltokcan.com
Instagram: beriltokcan
@devinim
Anat Baniel Method® NeuroMovement® Practitioner
www.beriltokcan.com
www.devinim.ist
RECOMMENDED RESOURCES
(list compiled by Beril)
BOOKS
Awareness Through Movement, Moshe Feldenkrais
Hardwiring Happiness, Rick Hanson
Hold Onto Your Kids, Dr.Gordon Neufold & Dr.Gabor Maté
Kids Beyond Limits, Anat Baniel
Move Into Lİfe, Anat Baniel
Parenting from the Inside Out, Daniel Siegel and Mary Hartzell
Positive Discipline for Children with Special Needs, Jane Elsen, Steven Foster & Arlene Raphael
Rising Strong, Brené Brown
Soft Wired, Michael Merzenich
The Brain That Changes Itself, Norman Doidge
The Brain’s Way of Healing, Norman Doidge
The Whole Brain Child, Daniel Siege and Tina Payne Bryson
Train Your Mind, Change Your Brain, Sharon Begley
Trauma-Proofing Your Kids, Peter A.Levine, Maggie Kline
HEALTHCARE PRACTITONERS
Dr.Paul Jordan
drjordan@drpauljordan.net
https://drpauljordan.godaddysites.com/
Dr.Roy Nuzzo
Overlook Hospital, Summit NJ
973-306-9388
video.popc@gmail.com
Dr.Joseph C. D’Amico
212-757-6440
Info@drjosephcdamico.com
SPML
http://www.podopediatrics.net/spml
Facebook Group: SPML - Selective Percutaneous Myofascial Lengthening
Anat Baniel
415-847-1311
scheduling@anatbanielmethod.com
Judith Dack
judithdack@uptownstudio.ca
416-481-2381
Beril Tokcan
www.beriltokcan.com
Instagram: beriltokcan
EXCERPTS FROM THE INTERVIEW
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 7, Beril Tokcan, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
You have all these dreams about what's next in your life.. ... suddenly it's all washed away and you're left with a big unknown.
The gap was getting larger and larger every day. Our doctors kept telling me .... “They were born prematurely. We should wait a little more.”
There's that motherly instinct saying, “something is wrong,” but you're hoping it's all fine because the doctor is saying it's all fine.
There should be a more humane way to connect with him and see where he's at and to help him get to the next step, not go 50 steps ahead. I had no idea what it could be, but I knew there should be a way so that’s when I started doing my research,
I had no idea how much movement has influence on the brain's potential to learn and change it.
It[ABMN] works in different ways with each child because each brain is unique.
I was feeling very alone and isolated. I thought no one got what I was going through. I built these big walls around me and I just wanted to be inside with the two kids I just didn't want to have anything to do with the outside world.
I started to see a psychologist. And one of the things that she told me really struck me. She said, “You have to put the oxygen mask to yourself first,” which I found out to be very true.
I said out loud that I have a child with special needs. And that was the breaking point for me because before that, you know, of course I have a special needs child, but I couldn't verbalize it.
The ABM training was wonderful because you could look into each other's eye and understand each other and feel each other without, without needing for words, it was such a safe place to be.
I went to the[ABMN] training to learn the tools to help my son and other children, but I had no idea how much it would change me as a person.
We need to see where the child is and offer different ways for him to figure out how to get to the next step.
He's a child with confidence and determination and motivation because he figured things out for himself. And by me slowing down and by me connecting with him and by me giving him the space, he figured things out.
At one point he left his walker and started taking steps. And there was more fluidity in his walk and he opened up his arms and he said, “I'm free now.”
When he was diagnosed, we went to see a couple of neurologists and all of them basically gave similar answers of what he will never be able to do in life.
How come they can speak so firmly about things that my son will never be able to do in life? He's only one year old. It's just that motherly instinct saying, I'm going to do everything in my power to help him improve his potential.
Sports has been a part of our journey, a big part of our journey because that's where he likes to challenge himself and wants to play together with his friends. And I see that as the best therapy.
Trust your intuition in whichever path you want to take. And do a lot of research. Not everything will be useful for your child, but find your own rhythm and pace and what works for you. Don’t wait for answers to come to you.
No one has a magic wand. It's a long process and it can be hard. But it can also be joyful and fun. Just embrace it all and take care of yourself. I wish I had started taking care of myself and helping me heal earlier.
Find parents that are going through similar journey and process because you do need someone to walk this path with.
I don't believe in labels and I don't think we need words like special or unique or extraordinary. I think each child is unique and special and extraordinary..... By labeling them, you're pushing them outside of the circle.
Be open enough to listen, but then listen to your intuition and let that be the guide in your decision-making process.
The most important thing is that the child can learn and if they can learn, they can always learn more.
You can follow Dr. Jill on Twitter
@drjbt
Visit Dr. Jill Bolte Taylor's website
http://drjilltaylor.com
Dr. Jill's Ted Talk, "My Stroke of Insight"
https://www.ted.com/talks/jill_bolte_taylor_my_stroke_of_insight
The Harvard Brain Bank
https://hbtrc.mclean.harvard.edu
Fifty Trillion Molecular Geniuses Musical Composition
Cecelia Chorus of NY commissioned The Brothers Balliett for a musical composition, Fifty Trillion Molecular Geniuses, with texts drawn from Dr. Jill Bolte Taylor’s book and TED Talk My Stroke of Insight. The piece was performed at Carnegie Hall on Dr. Jill's 60th birthday.
Read more: https://ceciliachorusny.org/updates-contact/brad-doug-balliett-composing-fifty-trillion-molecular-geniuses
Moshe Feldenkrais and The Feldenkrais Method®
The Feldenkrais Method® of somatic education was developed by Dr. Moshe Feldenkrais. It is a powerful approach to improving life that uses gentle, mindful movement to bring new awareness and possibility into every aspect. The Feldenkrais Method is based on principles of physics, biomechanics, and an empirical understanding of learning and human development.Since how you move is how you move through life, these improvements will often enhance your thinking, emotional regulation, and problem-solving capabilities. Read more: https://feldenkrais.com
Anat Baniel and NeuroMovement®
Anat Baniel, a student of Moshe Feldenkrais, developed and evolved NeuroMovement® from 30+ years of experience with thousands of clients using practical applications of brain plasticity principles. The Anat Baniel Method® approach is founded in neuroscience and the biodynamics of the human body, and utilizes movement and the 9 Essentials to create conditions for the brain to wake up and upgrade its own functioning.
The Nine Essentials
Essential 1 – Movement with Attention; Wake up to Life
Essential 2 – Slow; Luxuriate in the Richness of Feeling
Essential 3 – Variation; Enjoy Abundant Possibilities
Essential 4 – Subtlety; Experience the Power of Gentleness
Essential 5 – Enthusiasm; Turn the Small into the Great
Essential 6 – Flexible Goals; Make the Impossible Possible
Essential 7 – The Learning Switch; Bring in the New
Essential 8 – Imagination & Dreams; Create your Life
Essential 9 – Awareness; Thrive with True Knowledge
Read more about the Nine Essentials:
https://www.anatbanielmethod.com/about/neuromovement/neuromovement-and-9-essentials
Recommended Reading:
My Stroke of Insight by Dr. Jill Bolte Taylor
Whole Brain Living by Dr. Jill Bolte Taylor (Available May 2021, published by Hay House)
The Feldenkrais Method by Staffan Elgelid, Chrish Kresge, with forward by Jerry Karzen, this book includes perspective from 26 leaders and experts in the Feldenkrais field. It explains the importance of learning through movement with the brain’s attention as a means for physical and cognitive improvement and transformation.(Available May, 2021, published by Handspring.) Pre-order at feldenkraismovementbook.com to receive 10% off and free shipping in the US/UK.
Awareness Through Movement by Moshe Feldenkrais
The Potent Self by Moshe Feldenkrais
Kids Beyond Limits by Anat Baniel
_______________________________
Notable Quotes from This Episode
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 6, Dr. Jill Bolte Taylor, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
"How does our brain create our perception of reality?"
"I could not walk, talk, read, write, or recall any of my life. I became a complete infant in a woman’s body. I was minutes from death."
"I knew nothing. I had no information in my left brain… I had no perception of my past. I was isolated completely in the present moment. It took eight years to recover all function of my left brain."
"I was nothing but a breathing body in a bed. That’s how my mother described me."
"I don’t use the term “victim” because I survived that day. I prefer that instead of calling people stroke victims—the victims died, the survivors survive—I encourage people to call us stroke survivors. It makes a difference. Words have power."
"If you’re going to be a good teacher, you have to go to the level of the student."
"When I experienced the stroke, I had incredible right brain ability. I was completely turned on to body language, physical language—all kinds of gifts of the right brain—far beyond the normal person. I could tell in an instant if someone was telling the truth or telling a lie, because the cells that could distract me from being able to tell that someone was telling a lie were turned off."
"I was very blessed. And this is one of the greatest gifts Gigi gave me. From day to day, I couldn’t remember yesterday or the day before because all I had was the present moment. She kept reminding me of what I couldn’t do yesterday. She was enthusiastic about my ability to get better."
"Every step is a celebration. I had to stay focused on what I could do, not on what I couldn’t do. So much of our society focuses on the disability. Let’s focus on and enthusiastically say YAY to what’s working, and then 'what’s the next thing I can learn?'"
WISDOM SHARED PRODUCTION TEAM:
Produced by: Dr. Carole Blueweiss
Audio Engineering: Keith Pyatt
Marketing and Promotion: Coby Green-Rifkin
FOR MORE INFORMATION:
The 5P- Society (Cri du Chat)
https://fivepminus.org/
Cri du Chat Society Facebook Page
https://www.facebook.com/CriDuChatSociety
National Organization for Rare Disorders
https://rarediseases.org/rare-diseases/cri-du-chat-syndrome
NOTABLE QUOTES FROM THIS EPISODE:
You are welcome you to share the wisdom from this episode. Please be sure to credit: “Ep. 5, Damas Manderson, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
22:30 “When you’re hurt, you hurt others”
30:59 “If empathy was the first point of reference for people, that would go a long way”
39:07 - “A handful of special needs parents can fall into the category of where the normal children become caregivers whether they want it or not.”
44:00: “What does it cost me? It’s only cost me money. What have I gained? A loving wholesome family, with a value that we will carry forever. My family is my legacy.”
50:00 “There’s not an instruction book for how to be an effective special needs mother and father or husband and wife.”
51: “Kindness doesn’t mean weakness. Kindness means strength.”
EDITOR’S NOTE:
Damas and Dina Manderson intend to start a foundation for their daughter, Kennedy Rose. These episode notes will be updated to include foundation information when it is available. (1/9/2021)
ABOUT PARIA HASSOURI
Website: www.PariaHassouri.com
Book: Found in Transition
Facebook: www.facebook.com/paria.hassouri
Instagram: @laparia
Twitter: @pariahassouri
LINKS FROM INTERVIEW
https://themoth.org/storytellers/cybele-abbett
ABOUT MARA YALE
Website: www.marayale.com
Facebook Page: www.facebook.com/yalemaram
Instagram: @maramyale
Blog: www.marazoemia.net
ABOUT REGAME-VR LAB AT NORTHEASTERN UNIVERSITY
Research in the Rehabilitation Games and Virtual Reality Laboratory at Northeastern University focuses on the sustainable, evidence-based integration of virtual reality (VR) and active video games into rehabilitation practice for children with neuromotor impairments such as cerebral palsy.
Website: www.web.northeastern.edu/regamevrlab
Facebook: www.facebook.com/regamevrlab
Twitter:@regamevr
Audio from ReGame-VR lab interviews produced by Benjamin Bertsch and Adam Fischer.
LINKS FROM INTERVIEW
I-ACQUIRE: www.nihstrokenet.org/i-acquire/family-resources
I-ACQUIRE clinical trial for constraint induced movement therapy: www.clinicaltrials.gov/ct2/show/NCT03910075
Cerebral Palsy Soccer: www.cpsoccer.us
Hand in Hand Parenting: www.handinhandparenting.org
The Reading Promise: www.makeareadingpromise.com
Dr. Karen Pape: www.karenpapemd.com
Children's Hemiplegia and Stroke Association (CHASA): www.chasa.org
International Alliance for Pediatric Stroke: www.iapediatricstroke.org
Sheryl Field, Field Center for Integrated Development: www.thefieldcenter.org
Feldenkrais: www.feldenkrais.com
Somatic Experiencing: www.traumahealing.org/about-us
About Claude Winn
website: http://claudewinn.com
Insta: @cwinnart
Song Credits
How Far I'll Go
written by Auliʻi Cravalho
© 2016 Walt Disney Records
LINKS FROM THE INTERVIEW
http://anatbanielmethod.com
http://suzingreen.com
http://yogalambertville.com
http://theclass.com
http://ramahdarom.com
https://www.autismspeaks.org/verbal-behavior-therapy
https://www.autismspeaks.org/floortime-0
ABOUT ANNE PRATT
Website: www.indymovevolution.com
Email: anne@indymovevolution.com
LINKS FROM INTERVIEW
Treatment Modalities
- Early Intervention: https://www.cdc.gov/ncbddd/actearly/parents/states.html
- Anat Baniel Method of Neuromovement: https://www.anatbanielmethod.com/
- The Masgutova Neurosensorimotor Integration (MNRI) Method Set: https://masgutovamethod.com/
- Functional Medicine: https://www.ifm.org/find-a-practitioner/
- Riley CP Clinic: https://www.rileychildrens.org/departments/cerebral-palsy-program
Therapies
- Hippotherapy: https://www.americanhippotherapyassociation.org
- Occupational Therapy: https://www.cerebralpalsy.org/about-cerebral-palsy/treatment/therapy/occupational-therapy
- Physical Therapy: https://www.cerebralpalsy.org/about-cerebral-palsy/treatment/therapy/physical-therapy
- Speech Therapy: https://www.cerebralpalsy.org/about-cerebral-palsy/treatment/therapy/speech-language-therapy
- Water Therapy: https://www.cerebralpalsy.org/about-cerebral-palsy/treatment/therapy/aqua-therapy
Tools & Equipment
- Eye Tracking Devices: https://www.cerebralpalsy.org/inspiration/technology/eye-tracking
Defining the Body
The corpus callosum is the primary commissural region of the brain consisting of white matter tracts that connect the left and right cerebral hemispheres. https://www.ncbi.nlm.nih.gov/books/NBK448209/