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Hey friends! Welcome to the Lucky Few Podcast where we are shifting the narrative by shouting the worth of people with Down syndrome. With your hosts, Heather Avis, Micha Boyett, and Mercedes Lara. Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
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Friends, we had another hot topic in our group text that we knew we needed to bring on the pod to have with all of you! Today we’re chatting about the February 25th episode of “Saturday Night Live” with a guest host who used his niece and her Down syndrome diagnosis as a punch line to his set. We’re talking about our reactions and the larger conversation: who has the right to use Down syndrome and disability as a joke or punch line? Join us as we discuss the discomfort when jokes are made for an audience not connected to someone with Down syndrome and whether the laugh is at the expense of the person with the disability. Listen in as we unpack the complexities of comedy, connection, and the importance of shifting narratives. --- SHOW NOTES Comedian Shane Gillis opening the February 25, 2024 episode of “Saturday Night Live” One of the articles written about the backlash Learn more about Josh Blue More episodes to check out: 245. Can An Advocate Get It Wrong Sometimes? 234. Producing A Diverse, Authentic, & Honoring Netflix Series (w/Down For Love Producer Robyn Paterson) 217. The Things People Say 208. Growing Through Uncomfortable Conversations (w/Ashley - TLFP Producer & Self-Advocate) 186. Our Response to the Ableist Comments on Netflix's "Love Is Blind" 169. The Harm in Using People with Disabilities As "Inspiration" in Clickbait Viral Videos JOIN THE MOVEMENT Join us in celebrating and supporting The Lucky Few Podcast! For just $0.99, $4.99, or $9.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Your support makes a difference in our ability to create meaningful content, enable us to cover production costs, and explore additional opportunities to expand our resources. Become an essential part of The Lucky Few movement today!  MICHA’S NEW BOOK Pre-order Micha’s new book Blessed Are The Rest Of Us coming April 4, 2024! (All pre-order’s purchased through Baker Book House receive a signed copy with a lucky few temporary tatoo!) THANK YOU TO OUR SPONSOR: Thank you, Enable SNP for sponsoring this episode! 47. Planning for the Future w/Phillip Clark from Enable SNP 191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
For nearly 250 episodes we’ve had educational, encouraging, and meaningful conversations amplifying voices and shifting narratives for individuals with Down syndrome. Over the last 6 years, we’ve tackled topics on education, health & wellness, accessibility, stereotypes, legal rights, media representation, advocacy, and so much more! We were even recognized with the 2023 Media Award at the National Down Syndrome Congress Convention! We’ve had so many great moments but the best part of this podcast is being part of this one-in-a-million community! March 8th we got to celebrate LIVE in San Diego, California! It was so special getting to meet our listeners, play some trivia, chat about the many ways we’ve learned, advocated, and celebrated over the last six years, and have a special guest share their good news!!  On March 14, 2024, we marked our MILLIONTH DOWNLOAD, we’re so grateful to every one of you, for listening, sharing, and being part of The Lucky Few community. We look forward to a million more laughs and reasons to learn, advocate, and celebrate alongside this incredible community. Thanks for your support narrative shifters, cheers to a million more!!! SHOW NOTES Trivia Links: 17. Self Advocacy - Down Syndrome in DC with Kayla McKeon! 92. Politics & Down Syndrome w/Kayla McKeon & Ashley Helsing 204. Self-Advocates On Capitol Hill w/Kayla McKeon, Matthew Schwab, & Charlotte Woodward  57. Shelley Gottsagen On Her Son Zack Gottsagen's Fame, The Oscars, + More! 10. Inclusion - An Educator’s Perspective with Kristin Enriquez Pt. 1 85. Is Inclusion Always The Best Option? 198. The Best We Can: An Unscripted Conversation on Inclusion In Our Schools 218. Creating Inclusion For All Learners (w/Tim Villegas)  Ways we’ve learned, advocated, and celebrated: 26. Owning Your Influence By Using Your Words with Amy Julia Becker 88. (Un)learning the Advocacy Language 172. Defining Ableism, Allyship & Advocacy + Redefining "Inclusion" - ft. Dr. Priya Lalvani 117. Discussing "Dignity Beyond Accomplishment," An Article by Justin Hawkins (ft. author, Justin Hawkins) 163. What does success mean to you? 160. Organ Transplant Discrimination Against People with Disabilities (ft. incredible advocates!)  217. The Things People Say 16. Live From the Dear Mom Conference! 225. NYC Buddy Walk Highlights  150. Cole Sibus on Being An Actor w/Down Syndrome, Moving Away From Home, + SO Much More!  227. French Fries, Modeling, & Meeting the Vice President (w/Ronnie "The Fry Guy" and Sister LaTasha) 229. Poet, Author, "Levitator of Language" Sid Gosh (w/Mom Dr. Vaish Sarathy)  Thank you to our event sponsors and vendors: ARCC Center Respite Inclusive Education Project Functional Nutrition For Kids Weaver & Associates San Diego Regional Center Path-Now Resounding Joy  Amanda’s Adaptive Martial Arts Includ(Ed) San Diego Grace Place Art Special thanks to our partner: GiGi’s San Diego Special thanks to Haven by Communal, Jen Byard, Jen & Addie Jones JOIN THE MOVEMENT Join us in celebrating and supporting The Lucky Few Podcast! For just $0.99, $4.99, or $9.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Your support makes a difference in our ability to create meaningful content, enable us to cover production costs, and explore additional opportunities to expand our resources. Become an essential part of The Lucky Few movement today!  DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
We’re so excited to welcome feature film executive turned author and disability advocate, Kelley Coleman to the show! Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Support releases TODAY!! Friends, this book is like gold, it provides the kind of support and confidence we all need to navigate and understand the complex systems, services, and supports no matter what diagnosis our kids have. It’s a resource we’ll be looking to for years to come, providing us with helpful questions, checklists, and ways to access services based on your child's individual needs. We celebrate finding friendship and community throughout the disability community, and Kelley shares how the Down syndrome community has embraced her and her son. She even shares how disability rights activist Judy Heumann shared her enthusiasm for a resource like Kelley’s book and emphasized the importance of sharing stories as self-advocates and nondisabled advocates in the disability space. This is a book and conversation we’re so grateful for, this is an episode you don’t want to miss! --- SHOW NOTES Order Kelley’s new book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Support To learn more, visit https://www.kelleycoleman.com/  Follow Kelley on Instagram and Facebook Learn more about Judy Heumann’s legacy JOIN THE MOVEMENT Join us in celebrating and supporting The Lucky Few Podcast! For just $0.99, $4.99, or $9.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Your support makes a difference in our ability to create meaningful content, enable us to cover production costs, and explore additional opportunities to expand our resources. Become an essential part of The Lucky Few movement today!  THANK YOU TO OUR SPONSOR: Thank you, Enable SNP for sponsoring this episode! 47. Planning for the Future w/Phillip Clark from Enable SNP 191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Friends, we’re so excited to have award-winning writer, speaker, podcaster, disability advocate, and Mom of three, Amy Julia Becker, joining us for a third time today! She’s here to chat about what the journey with her daughter Penny has looked like after turning 18 and entering adulthood. She’s been in the process of making decisions about education, employment, guardianship, independent living, and so much more! We chat about navigating new services, and agencies, and Teresa from Social Security. What’s been the decision that has felt like the weightiest part of the transition into adulthood so far. How she’s included Penny in the decision-making process, her thoughts on guardianship, and so much more. Turning 18 brings on a whirlwind of decisions, Amy reflects on how it’s paralleled the early years and shares advice to consider in your child's middle and high school years. This is an episode you not only don’t want to miss, but you’ll want to bookmark and take notes on!! --- SHOW NOTES Check out Amy Julia’s post about Penny’s nails Instagram: @amyjuliabecker Facebook: @amyjuliabeckerwriter YouTube Channel Threads: @amyjuliabeckerX: @amyjuliabecker amyjuliabecker.com  Our Previous Episodes w/ Amy Julia:  26. Owning Your Influence By Using Your Words with Amy Julia Becker 158. Faith, Healing, & Disability, ft. Amy Julia Becker (Mother/Author) Episode mentioned: 214. Guardianship, Conservatorship, & Supportive Decision-Making DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! THANK YOU TO OUR SPONSOR: Thank you, Enable SNP for sponsoring this episode! 47. Planning for the Future w/Phillip Clark from Enable SNP 191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Friends, we know that seeing specialists and hearing your child could potentially have cardiac issues after receiving a prenatal diagnosis can all be overwhelming. We also know that while months of celebrating and advocating for awareness can be helpful, but also adds to those valid overwhelming feelings when you’re new to a diagnosis. While those statistics are true, 50% of babies born with Down syndrome are born with heart defects. There are also incredible advancements in cardiology and amazing physicians like our guest this week Dr. Lorraine Schratz there for your family every step of the way! Dr. Schratz is a pediatric and fetal cardiologist at Massachusetts General for Children and an instructor at Harvard Medical School. She acknowledges the fear that comes with a diagnosis but emphasizes the advancements in medicine that have led to fewer follow-up surgeries for people with Down syndrome. Dr. Schratz stresses the importance of providing families with both medical facts and emotional support, tailoring information to their needs, and encouraging patients to ask as many questions as they need to. She shares her advice to create healthy habits for our kiddos with and without heart defects, what to expect when receiving a diagnosis, and recommends resources for support. We’re so grateful for conversations like these, and in the words that Dr. Schratz’s patients wanted to send us, “It’ll be ok!”  --- SHOW NOTES NDSS (National Down Syndrome Society) The Heart And Down Syndrome American Heart Association (Dr. Schratz recommends using the health conditions tab for helpful resources and information) Global Down Syndrome Foundation (more information and resources on congenital heart defects) The Brett Boyer Foundation American Academy of Pediatrics: Down syndrome guidelines DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! THANK YOU TO OUR SPONSOR: Thank you, Enable SNP for sponsoring this episode! 47. Planning for the Future w/Phillip Clark from Enable SNP 191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Friends, you know we don’t shy away from asking the hard questions; today we’re diving into a complex one: Can an advocate get it wrong sometimes? We discuss the balance of advocating and learning, the foundation of a good advocate, and how humility shapes our advocacy journey. We explore the responsibility and journey of advocating for those with Down syndrome, and why being a listener and learner is key to effective advocacy. How long do you have to be part of something to be an advocate? What is the foundation of a good advocate? What happens if you do get it wrong? Tune in to hear our personal stories, how we’ve grown along this journey so far, and the importance of humility in advocacy. Join us for a thoughtful conversation you won't want to miss! --- SHOW NOTES:  Other episodes to check out: 28. Owning Your Influence In ALL Your Spaces! 101. Jalondra Davis on Race, Disability, & Advocacy 172. Defining Ableism, Allyship & Advocacy + Redefining "Inclusion" - ft. Dr. Priya Lalvani 197. Exposing The Roots (Racism, Ableism, Microagressions, + More) 203. Beyond Checking A Box 208. Growing Through Uncomfortable Conversations (w/Ashley - TLFP Producer & Self-Advocate) JOIN US LIVE! After six incredible seasons, and nearly 250 episodes, we’re excited to celebrate this one-in-a-million community! Over the last six years we’ve laughed, learned, and shared meaningful conversations, we’re so grateful to every one of you! Whether you’re a weekly listener or new to The Lucky Few fam, we hope to see you in San Diego or have you tuning in virtually! When: Friday, March 8th, 6:30 pm- 9:30pm Where: Haven by Communal, 3381 30th Street San Diego, CA 92104 What: Doors open at 6:30 pm for cocktail hour. Enjoy drinks, merchandise/books from self-advocates, connecting with local DS community partners, and more! The LIVE podcast recording begins at 7:30 pm! Note: This is an adult-focused event. We cannot wait to see you there!! Head to the luckyfewpodcast.com and click on the banner to get your tickets they’re selling fast! DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHATEmail hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Friends, we’re celebrating Valentine’s Day with a couple that are sharing their enchanting love story! Their engagement was marked by a viral video and widespread media, Matthew Schwab and fiancé Lucia Romano share everything from their first date to their dreams for the future. This power couple is dedicated to shifting narratives for people with Down syndrome and the entire Intellectual and Developmental Disability community. From being fluent in multiple languages, working, driving, owning a public speaking business, living independently, ballroom dancing, community volunteering, participating as a multi-sport athlete in The Special Olympics, and giving a TEDx Talk, these two are the definition of a power couple! They have a shared passion for advocacy and hope their story will help challenge stereotypes about people with Down syndrome. We discuss their advice for those nervous about dating, and their moms share advice for families navigating their loved one's dating. This is an episode (and love story!) you don’t want to miss! --- SHOW NOTES Watch Matthew & Lucia’s proposal reel that has gone viral! Learn more about Matthew Schwab Speaks Follow Matthew Schwab on Instagram Follow Lucia Romano on Instagram Listen to past episodes with Matthew: 66. Public Speaking & Self Advocacy w/Matthew Schwab 183. Following the Lead of Self-Advocates (ft. Matthew Schwab) Listen to our episode with Down For Love Producer Robyn Paterson 234. Producing A Diverse, Authentic, & Honoring Netflix Series (w/Down For Love Producer Robyn Paterson) Learn more about the show Down For Love Learn more about the show Life Goes On Learn more about the show Born This Way DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! THANK YOU TO OUR SPONSOR: Thank you, Enable SNP for sponsoring this episode! 47. Planning for the Future w/Phillip Clark from Enable SNP 191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Friends, last February we (Heather & Josh!) had an unscripted conversation about challenges with IEP’s and what the best setting for Macy’s education would look like. They say a lot can happen in a year, and when it comes to school, that’s an understatement. We’re talking about Macy’s journey in the last year, from a Charter school program and ultimately her decision to return to a life skills program. The importance of seeking advice, but most importantly, following our kid's lead, and asking what they want. If you’re feeling the exhaustion of fighting for a space where your kid feels belonging, we see you, you’re not alone. Join us for another unscripted conversation about inclusion in our schools, how it's worked (and not worked) for our kids the last year, and so much more! Be sure to let us know your thoughts, feelings, and experiences after listening to this episode. --- SHOW NOTES: 198. The Best We Can: An Unscripted Conversation on Inclusion In Our Schools  229. Poet, Author, "Levitator of Language" Sid Gosh (w/Mom Dr. Vaish Sarathy) Other episodes to check out: 28. Owning Your Influence In ALL Your Spaces! 40. Back to School & All Things Education, Inclusion, & Down Syndrome 64. Building Bridges Towards Inclusion w/Barbara Butler 85. Is Inclusion Always The Best Option? 128. What To Expect From Inclusive Settings 172. Defining Ableism, Allyship & Advocacy + Redefining "Inclusion" - ft. Dr. Priya Lalvani 216. Continuing Affects Of The Pandemic on Inclusion in our Schools (w/Common Ground Society) 218. Creating Inclusion For All Learners (w/Tim Villegas)  223. Included, Seen, & Heard: The Impact of Successful Inclusion JOIN US LIVE! After six incredible seasons, and nearly 250 episodes, we’re excited to celebrate this one-in-a-million community! Over the last six years we’ve laughed, learned, and shared meaningful conversations, we’re so grateful to every one of you! Whether you’re a weekly listener or new to The Lucky Few fam, we hope to see you in San Diego or have you tuning in virtually! When: Friday, March 8th, 6:30 pm- 9:30pm Where: Haven by Communal, 3381 30th Street San Diego, CA 92104 What: Doors open at 6:30 pm for cocktail hour. Enjoy drinks, merchandise/books from self-advocates, connecting with local DS community partners, and more! The LIVE podcast recording begins at 7:30 pm! Note: This is an adult-focused event. We cannot wait to see you there!! Head to the luckyfewpodcast.com and click on the banner to get your tickets they’re selling fast! DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Friends, today we’re diving deep into the heart of our favorite topic: inclusion! We chat about the barriers preventing true inclusion and we're challenging societal norms and asking the important questions about what defines human worth. What kind of person gets to be celebrated? What kind of person with Down syndrome gets to be celebrated? We explore the buzzword status of “inclusion,” the role of privilege in accessing support and services, and so much more. As we navigate this journey, we recognize the honor and burden of advocating for a more inclusive world. Progress in inclusion is happening, but are we truly championing the essence of every individual? Is the current system promoting equal access and opportunities? We’re asking all the questions, you don’t want to miss this thought-provoking episode! --- SHOW NOTES Learn more about regional assembly member Mar Galcerán’s! Other episodes to check out: 17. Self Advocacy - Down Syndrome in DC with Kayla McKeon! 28. Owning Your Influence In ALL Your Spaces! 40. Back to School & All Things Education, Inclusion, & Down Syndrome 58. A Conversation About Race & Down Syndrome w/Mercedes Lara & Kelli Caughman 64. Building Bridges Towards Inclusion w/Barbara Butler 67. Unpacking Privilege & Understanding Intersectionality w/Jalondra Davis 85. Is Inclusion Always The Best Option? 92. Politics & Down Syndrome w/Kayla McKeon & Ashley Helsing 101. Jalondra Davis on Race, Disability, & Advocacy 126. Creating Opportunities & Changing Perspectives Through Inclusive Employment ft. Wendy Lacey (Cornerstone Montclair) 128. What To Expect From Inclusive Settings 148. Diversity in the Down Syndrome Community 149. The Only Black Mama In The Room - ft. Ashley Dirks (mother/advocate) 172. Defining Ableism, Allyship & Advocacy + Redefining "Inclusion" - ft. Dr. Priya Lalvani 195. Connecting with the Black Down Syndrome Association (ft. Kelli Caughman & Crystal Lotterberry) 197. Exposing The Roots (Racism, Ableism, Microagressions, + More) 198. The Best We Can: An Unscripted Conversation on Inclusion In Our Schools 203. Beyond Checking A Box 204. Self-Advocates On Capitol Hill w/Kayla McKeon, Matthew Schwab, & Charlotte Woodward 205. Healthcare Equity in the Down Syndrome Community w/Dr. Spinazzi & Dr. Skotko 208. Growing Through Uncomfortable Conversations (w/Ashley - TLFP Producer & Self-Advocate) 218. Creating Inclusion For All Learners (w/Tim Villegas)  223. Included, Seen, & Heard: The Impact of Successful Inclusion JOIN US LIVE! After six incredible seasons, and nearly 250 episodes, we’re excited to celebrate this one-in-a-million community! Over the last six years we’ve laughed, learned, and shared meaningful conversations, we’re so grateful to every one of you! Whether you’re a weekly listener or new to The Lucky Few fam, we hope to see you in San Diego or have you tuning in virtually! When: Friday, March 8th, 6:30 pm- 9:30pm Where: Haven by Communal, 3381 30th Street San Diego, CA 92104 What: Doors open at 6:30 pm for cocktail hour. Enjoy drinks, merchandise/books from self-advocates, connecting with local DS community partners, and more! The LIVE podcast recording begins at 7:30 pm! Note: This is an adult-focused event. We cannot wait to see you there!! Head to the luckyfewpodcast.com and click on the banner to get your tickets they’re selling fast! DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
We love any opportunity to have our friends from Massachusett’s General Hospital’s Down Syndrome Clinic on the show today we’re joined by Dr. Stephanie Santoro! Dr. Santoro, a renowned geneticist and pediatrician, discusses her impactful research in developing a Down syndrome instrument to enhance healthcare for individuals with Down syndrome. From prioritizing patient outcomes to filling gaps in resources, join us in exploring the unique aspects of health for those with Down syndrome and how research is vital to successful healthcare outcomes. Discover the insights gained from direct input, bridging the divide between medical guidelines and the lived experiences of individuals, caregivers, experts, and so much more! Be sure to check out the link in our show notes to be part of this important research survey! --- SHOW NOTES Participate in the survey developed by Dr. Santoro that will help in the future of healthcare for individuals with Down syndrome! Learn more about Massachusett’s General Hospital’s Down Syndrome Program Mercedes onion remedy for cold season DISCOUNT CODE Friends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off! HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 218: Creating Inclusion For All Learners (w/Tim Villegas - Originally aired 8/1/23) Friends, we’re taking the month of August to talk all things Back to School, today we kick off the series with a discussion on implementing inclusion in the classroom. We’re joined by Tim Villegas, he’s the director of communications for the Maryland Coalition for Inclusive Education (MCIE), a nonprofit that seeks to be the catalyst for the meaningful and successful inclusion of all learners in their neighborhood schools. Throughout his 16-year career in education, Tim has advocated for including students with extensive support needs in general education classrooms. He is the founder of Think Inclusive, a podcast for inclusive education, and Inclusive Stories, a narrative podcast series about families and school districts fully committed to inclusive education. Join us as we chat about all things inclusion in our schools: advice for educators, parents, and those in leadership looking to create spaces where everyone belongs. This is an episode packed with resources, be sure to check our show notes for all the links to helpful books, organizations, and films! SHOW NOTES Learn more about MCIE ⁠Website⁠ Follow MCIE on ⁠Facebook ⁠ Follow MCIE on ⁠Instagram ⁠ Follow MCIE on ⁠Twitter ⁠ Follow MCIE on ⁠LinkedIn ⁠ Learn more about ⁠Think Inclusive⁠ Listen to ⁠Inclusion Stories⁠ Learn more about ⁠TASH⁠ Learn more about ⁠The Beyond Access Model⁠ Check out ⁠Including Samuel⁠ Check out ⁠Who Cares About Kelsey?⁠ Check out ⁠Intelligent Lives⁠ Check out ⁠My Disability Roadmap⁠ Check out ⁠Club 21⁠   Books to check out (Educators & Parents): ⁠Leading for All: How to Create Truly Inclusive Excellent Schools⁠ ⁠Reimaging Special Education: Using Inclusion as a Framework to Build Equity and Support All Students⁠ ⁠Unwanted: Fighting to Belong⁠  Check out these episodes:  ⁠10. Inclusion - An Educator’s Perspective with Kristin Enriquez Pt. 1⁠ ⁠11. Inclusion - A Parents Perspective with Kristin Enriquez Pt. 2⁠ ⁠132. BTS Pt 3 - What's the impact of inclusion? (ft. Kristin Enriquez)⁠ ⁠39. Back to School w/IEP Experts Vickie Brett & Amanda Selogie⁠ DISCOUNT CODE Friends, grab your narrative shifting gear over on ⁠The Lucky Few Merch Shop⁠ and use code PODCAST for 10% off! HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email ⁠hello@theluckyfewpodcast.com⁠ for more information! LET’S CHAT Email ⁠hello@theluckyfewpodcast.com⁠ with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 237. Is There Such A Thing As A Difficult Parent? (Originally aired 12/12/23) There are so many feelings when we enter spaces alongside our loved ones with Down syndrome and disabilities. The question, “Is there such a thing as a difficult parent?” It made us think deeply about advocacy, boundaries, and how gender, race, and cultural stereotypes can play a role in this question. What does it mean to advocate? What is your job as your child's advocate? If you make people uncomfortable does that make you difficult or does that make you an advocate? Is there a way around advocating and not being labeled a difficult parent? Friends, you don't want to miss our conversation on this hot topic! --- SHOW NOTES: Check out⁠ Open Future Learning's Instagram post⁠ that got this conversation started! DISCOUNT CODE: Friends, grab your narrative shifting gear over on⁠ The Lucky Few Merch Shop⁠ and use code PODCAST for 10% off! THANK YOU TO OUR SPONSORS: Thank you,⁠ Enable SNP⁠ for sponsoring this episode! ⁠47. Planning for the Future w/Phillip Clark from Enable SNP⁠ ⁠191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP⁠ Thank you,⁠ Jack’s Basket⁠ for sponsoring this episode! ⁠EP 44 Shifting the Diagnosis Narrative w/Carissa Carroll from Jack's Basket⁠ ⁠EP 180 "You Make Me Better" (An Interview with Carissa Carroll, Founder of Jack's Basket)⁠ ⁠232. Shifting the Narrative Through Unexpected News Curriculum for Providers (w/Carissa Carroll & Dr. Erin Plummer)⁠ HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! LET’S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 232: Shifting the Narrative Through Unexpected News Curriculum for Providers (w/Carissa Carroll & Dr. Erin Plummer - Originally aired 11/9/23) Friends, we’re excited to have Jack’s Basket founder Carissa Carroll back on the show! Today she’s joined by Dr. Erin Plummer to chat with us all about a new curriculum they are launching for medical providers. They’re providing practical online training for providers to review the literature and allow reflection on their own experiences of giving a diagnosis. What could they do better? What went well? What were they feeling? How might their patient have felt? Carissa shares her own experience with receiving her son’s Down syndrome diagnosis and her passion for changing a family’s diagnosis story from the very beginning. We’re so grateful for the work Carissa and Dr. Plummer are doing for our community and can’t wait to share this incredible project they’ve been working on that will make a positive impact for so many families! --- SHOW NOTES Learn more about ⁠Jack’s Basket⁠ ⁠Resources for Providers⁠ ⁠Prenatal Consult Film⁠ ⁠205. Healthcare Equity in the Down Syndrome Community w/Dr. Spinazzi & Dr. Skotko⁠ Check out previous episodes with Carissa Carroll: ⁠44. Shifting the Diagnosis Narrative w/Carissa Carroll from Jack's Basket⁠ ⁠180. "You make me better" (An Interview with Carissa Carroll, Founder of Jack's Basket)⁠ DISCOUNT CODE Friends, grab your narrative shifting gear over on ⁠The Lucky Few Merch Shop⁠ and use code PODCAST for 10% off! THANK YOU TO OUR SPONSOR: Thank you, ⁠Enable SNP ⁠or sponsoring this episode! ⁠47. Planning for the Future w/Phillip Clark from Enable SNP⁠ ⁠191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP⁠ HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email ⁠hello@theluckyfewpodcast.com⁠ for more information! LET’S CHAT Email ⁠hello@theluckyfewpodcast.com⁠ with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 234: Producing A Diverse, Authentic, & Honoring Netflix Series (w/ Down For Love Producer Robyn Paterson - Originally aired 11/21/23) On episode 226 we shared our thoughts on the hit Netflix series Down For Love which follows several people with Down syndrome as they navigate “the triumphs and trials of dating.” If you listened to “Our Thoughts On The Netflix Series Down For Love,” then you know how much we loved this show and appreciated the conversations that it started. We’re so excited to keep the conversation going with the Producer of the show, Robyn Paterson! Robyn is a filmmaker and screen creative based in New Zealand committed to promoting diversity, respect, partnership, and equity both on and off the screen. Best known for Down for Love (Netflix), In the Zone (Apple TV), Grand Designs: New Zealand, and Finding Mercy (Prime Video), and the current President of the Directors and Editors Guild of Aotearoa New Zealand. Friends, we get a behind-the-scenes look at the process of approaching the storytelling of participants with Down syndrome and the intentional decisions that made the show so impactful. Robyn shares the challenges and impactful moments of filming Down For Love, along with the differences from other reality-type shows. We chat about the casting process to ensure diverse and authentic representation, and so much more! We promise there are no spoilers, just an incredible conversation about the responsibility to tell diverse, authentic, and honoring stories of people with disabilities. --- SHOW NOTES ⁠Watch Down For Love⁠ ⁠Learn more about Robyn Paterson⁠ Learn more about the ⁠Directors and Editors Guild of Aotearoa New Zealand (DEGANZ)⁠. Learn more about Robyn’s Production company, ⁠Sweet⁠. Learn more about Paralympic Gold Medalist, ⁠Jai Waite⁠. Learn more about ⁠Upside Downs⁠ ⁠Check out our conversation about Down For Love on episode 226!⁠ DISCOUNT CODE Friends, grab your narrative shifting gear over on ⁠The Lucky Few Merch Shop⁠ and use code PODCAST for 10% off! THANK YOU TO OUR SPONSORS: Thank you, ⁠Enable SNP ⁠or sponsoring this episode! ⁠47. Planning for the Future w/Phillip Clark from Enable SNP⁠ ⁠191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP⁠ Thank you, ⁠ABLEnow⁠ for sponsoring this episode! ⁠115. How The ABLE Act Supports Your Child's Future (ft. Catherine Beck)⁠ HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email ⁠hello@theluckyfewpodcast.com⁠ for more information! LET’S CHAT Email ⁠hello@theluckyfewpodcast.com⁠ with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 226. Our Thoughts On The Netflix Series “Down For Love” (Originally aired on 9/26/23) Have you heard about the Netflix series “Down For Love”?! We’ve been hearing about it from friends, family, and even one of our kid's healthcare providers, all with rave reviews. So we set aside some of the reality shows that we feel a bit guilty about admitting we’ve watched and enjoyed a wholesome reality dating show of people with Down syndrome on a quest for love. This show highlighted so many things for us to think about as parents. The conversations that we’ll need to have about boundaries and consent, what we’d want to see for our kids, and so much more. It of course brought up so many questions that we dive into like: Did the show represent all types of people with Down syndrome? Does the show honor people with Down syndrome? Is the title “Down For Love” problematic or just a fun pun? We’re diving deep into not only the show, but our thoughts (and some fears!) on our kiddos dating. This is an episode you don’t want to miss! --- SHOW NOTES ⁠Learn more about “Down For Love”⁠ ⁠168. When is it time to have "the talk" with your child with Down syndrome? (ft. Dr. Katie Frank, PhD, OTR/L)⁠ ⁠More on the backlash on the title “Down For Love”⁠ DISCOUNT CODE Friends, grab your narrative shifting gear over on ⁠The Lucky Few Merch Shop⁠ and use code PODCAST for 10% off! THANK YOU TO OUR SPONSORS: Thank you, ⁠Enable SNP ⁠for sponsoring this episode! ⁠47. Planning for the Future w/Phillip Clark from Enable SNP⁠ ⁠191. Future Planning for the WHOLE Family - ft. Phillip Clark, Enable SNP⁠ Thank you, ⁠Jack’s Basket⁠ for sponsoring this episode! ⁠EP 44 Shifting the Diagnosis Narrative w/Carissa Carroll from Jack's Basket⁠ ⁠EP 180 "You Make Me Better" (An Interview with Carissa Carroll, Founder of Jack's Basket)⁠ HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email ⁠hello@theluckyfewpodcast.com⁠ for more information! LET’S CHAT Email ⁠hello@theluckyfewpodcast.com⁠ with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 208. Growing Through Uncomfortable Conversations (w/Ashley - TLFP Producer & Self-Advocate - Originally aired 5/23/23) Friends, we recognize and appreciate that so many of you come to us for our open, honest, and candid conversations week after week. After seeing the response Heather was receiving over on @theluckyfewoffical under a post that she wouldn’t be celebrating an abled person asking a disabled person to prom, we knew this topic deserved another conversation. We also knew the conversation deserved to include a person with disabilities. Our producer and self-advocate Ashley Fraccalossi joins us for this candid conversation on honoring people with disabilities and when that line can get blurred or crossed. She helps break down with us what inspiration p*rn means in the disabled community, unconscious bias, and how her own experiences with disability have shaped her views on this topic. We’re grateful to not only hear from her today, but to continue this important conversation with all of you. May we all continue to learn, listen, and grow from conversations like this together. --- SHOW NOTES We first talked about this topic on EP 169 ⁠The Harm in Using People with Disabilities As "Inspiration" in Clickbait Viral Videos⁠ Learn more about ⁠unconscious bias⁠ Watch ⁠Stella Young’s Ted Talk⁠ Read Heather’s blog post, ⁠“Why Kindness and Good Intentions Are Not Enough”⁠ DISCOUNT CODE Friends, grab your narrative shifting gear over on ⁠The Lucky Few Merch Shop⁠ and use code PODCAST for 10% off! LET’S CHAT Email ⁠hello@theluckyfewpodcast.com⁠ with your questions and Good News for future episodes. HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email ⁠hello@theluckyfewpodcast.com⁠ for more information! --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 229: Poet, Author, “Levitator Of Language”: Sid Ghosh (w/Mom Dr. Vaish Sarathy - Originally aired 10/17/23) Happy Down Syndrome Awareness Month, friends!! We’re celebrating BIG this month with some incredible self-advocates chatting about everything from entrepreneurship to marriage! Today, we’re excited to have poet, author, and “levitator of language,” Sid Ghosh on the show! He describes himself as, “just your autistic boy next door with Down syndrome!” His Mom, Dr. Vaish Sarathy joins us as Sid’s communication partner and also shares their journey of using spelling to communicate with the world. This incredible sixteen-year-old is the author of two chapbooks: Give a Book and Proceedings of the Full Moon Rotary Club. It’s a unique opportunity and honor to feature a non-speaker on a podcast and for the first time in The Lucky Few Podcast history, we’re offering a ⁠VIDEO version⁠ of this episode! Friends, whatever version you choose, this is an episode you don’t want to miss! --- SHOW NOTES Follow ⁠Sid on Instagram⁠ Follow ⁠Dr. Vaish Sarathy on Instagram⁠ Contact Dr. Vaish Sarathy: ⁠vaish@functionalnutritionforkids.com⁠ ⁠Check out Jandy Nelson⁠ Purchase Sid’s Chapter Books: ⁠Proceedings of the Full Moon Rotary Club⁠ ⁠Give a Book⁠ Learn more about ⁠Rapid Prompting Method (RPM)⁠ Learn more about ⁠The Spellers Method⁠ Learn more about ⁠Spelling To Communicate (S2C)⁠ Listen To Previous Episodes With Dr. Sarathy: ⁠79. Understanding Functional Nutrition for Our Kids w/Down Syndrome, ft. Dr. Sarathy⁠ ⁠80. Assuming Intelligence in Our Kids w/Down Syndrome, ft. Dr. Sarathy⁠ DISCOUNT CODE Friends, grab your narrative shifting gear over on ⁠The Lucky Few Merch Shop⁠ and use code PODCAST for 10% off! THANK YOU TO OUR SPONSOR: Thank you, ⁠ABLEnow⁠ for sponsoring this episode! ⁠115. How The ABLE Act Supports Your Child's Future (ft. Catherine Beck)⁠ HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email ⁠hello@theluckyfewpodcast.com⁠ for more information! LET’S CHAT Email ⁠hello@theluckyfewpodcast.com⁠ with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 214. Guardianship, Conservatorship, & Supported Decision-Making (Originally aired on 7/4/23) Friends, what better conversation to have on an episode released on a holiday that celebrates America than to talk about the differences between Guardianship, Conservatorship, and Supported Decision-making? We have attorney and Executive Director of Massachusetts Advocates for Children, Anna Krieger here to help explain the differences and similarities between these options. Anna is a nationally recognized expert on Supported Decision-Making and has trained, advocated, and written widely on the topic alongside decision-makers and their supporters. We’re also joined by self-advocate Craig Kinney and his mom Sandy, who have chosen Supported Decision-Making and are sharing their experience with us today! We hope this episode helps you think about what next steps you may consider when deciding what is best for your family. --- SHOW NOTES ⁠The Center for Public Representation⁠ ⁠National Resource Center for Supported Decision Making⁠ ⁠For more information on Conservatorship, Guardianship, & Supported Decision Making by State⁠ ⁠Massachusetts Advocates for Children⁠ DISCOUNT CODE Friends, grab your narrative shifting gear over on ⁠The Lucky Few Merch Shop⁠ and use code PODCAST for 10% off! THANK YOU TO OUR SPONSOR: Thank you, ⁠Jack’s Basket⁠ for sponsoring this episode! ⁠EP 44 Shifting the Diagnosis Narrative w/Carissa Carroll from Jack's Basket⁠ ⁠EP 180 "You make me better" (An Interview with Carissa Carroll, Founder of Jack's Basket)⁠ HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email ⁠hello@theluckyfewpodcast.com⁠ for more information! LET’S CHAT Email ⁠⁠hello@theluckyfewpodcast.com⁠⁠ with your questions and Good News for future episodes. --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 205: Nurturing Meaningful Connections With Our Kids (Originally aired 5/9/23) Happy Mother’s Day, friends!! On this week’s episode we’re celebrating with a candid conversation about connecting with your child with Down syndrome! We know how important making meaningful connections with our kids is, today we’re talking all about nurturing those connections. What we’re doing to develop the relationships with our kiddos, learning new ways to give and receive love, and so much more!  And we might even have a surprise performance by none other than our very own Micha Boyett performing her original score of a still untitled Mother’s Day song. We hope all you lucky mama’s out there know we love you, and as always, we’re cheering you on! --- SHOWNOTES: ⁠75. What makes a family? (Adoption + Motherhood w/Kayla Craig) ⁠ ⁠113. Happy Mother's Day! (Ft. Our Very Own Moms)⁠ ⁠14. Marriage & Relationships: Parents Raising Children with Down Syndrome⁠ Friends, grab your narrative shifting gear over on ⁠⁠⁠⁠The Lucky Few Merch Shop⁠⁠⁠⁠ and use code PODCAST for 10% off! LET’S CHAT: Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. HELP US SHIFT THE NARRATIVE: Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
Throwback Episode 205: Healthcare Equity in the Down Syndrome Community w/Dr. Spinazzi & Dr. Skotko (Originally aired 5/2/23) Friends, we’re so excited to have the brilliant Dr. Brian Skotko and Dr. Noemi Spinazzi back on the show today! They’re here to tell us about a big research project they worked on involving patients with Down syndrome who identify as Black as well as parents of patients who primarily speak Spanish. This work included conducting surveys of parents and primary care physicians from across the country over the last two years. Its primary goal was to identify the barriers for families looking to access adequate care that shouldn’t only be found at specialty Down syndrome clinics in large cities. We chat about structural racism in medical care, striving for cultural humility, some of the surprises they found in their research, and so much more. They share some valuable resources for those without access to a Down syndrome clinic and how we can all strive to be champions for the Down syndrome community. Thank you to Dr. Skotko and Dr. Spinazzi for their continued work in making sure everyone in the Down syndrome community has access to quality health care. --- SHOWNOTES: Learn more about ⁠Down Syndrome Clinic To You⁠   If you want to hear more from Dr. Skotko or Dr. Spinazzi, check out these episodes! ⁠63. Health & Down Syndrome w/Dr. Noemi Spinazzi ⁠  ⁠74. Building Brain Power in People w/Down Syndrome, ft. Dr. Brian Skotko⁠  ⁠​​77. Back to School or Back to the Screen? (Covid-19 & the Upcoming School Year ft. Dr. Spinazzi)⁠  ⁠109. Let's talk about the Covid-19 Vaccine - ft. Dr. Spinazzi⁠  ⁠129. How To Keep Your Kids with DS Healthy While Traveling ft. Dr. Spinazzi⁠ Friends, grab your narrative shifting gear over on ⁠⁠⁠The Lucky Few Merch Shop⁠⁠⁠ and use code PODCAST for 10% off! LET’S CHAT: Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. HELP US SHIFT THE NARRATIVE: Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! --- Send in a voice message: https://podcasters.spotify.com/pod/show/theluckyfewpod/message Support this podcast: https://podcasters.spotify.com/pod/show/theluckyfewpod/support
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