EPISODES

Friends, we’re so excited to have barber Vernon Jackson on the show today! In his barbershop and salon in Ohio, haircuts are more than just a service—they're an act of love and understanding. Through his viral program, The Gifted Event, Vernon provides free haircuts to children with disabilities, offering them patience, empathy, and a sense of belonging. A lifelong creative with a passion for serving others, he’s committed to seeing The Gifted Event continue to expand across the country and world, making barbershops and salons a safe and inclusive space for everyone. More than just a barber, Vernon is shaping a future where everyone feels embraced and accepted, one haircut at a time.

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Today, we’re chatting about navigating healthcare transitions with Dr. Emily Johnson, a dedicated advocate and physician specializing in the healthcare needs of individuals with Down syndrome. We discuss the importance of starting the transition process early, the challenges families may face, and the key considerations for a successful transition. Dr. Johnson also shares her personal experience as a mother and sister, to individuals with Down syndrome, and how her personal experiences have shaped her career as a physician. Friends, this episode will leave you with valuable insights that left us confident in starting conversations with our kid's providers that will set them up for successful transitions of care. This is an episode you’re going to want to bookmark!

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What does it mean to feel “lucky” to have a child with Down syndrome? We’re having a candid conversation about the evolving meaning of “lucky” within our community and personal journeys. Through the challenges and the joys, we know that things like toxic positivity and social media can leave us struggling to feel “lucky.” We’re sharing our thoughts, experiences, and some feedback from one of Heather’s social media posts on what “lucky” in The Lucky Few has come to mean. Join the conversation and share your experiences, perspectives, and advice on reframing the narrative around parenting a child with Down syndrome. Whether you’re feeling “lucky” or not, this episode offers a space for honesty and support.

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We’re so excited to have Phillip Clark back on the show, he’s the founder of ENABLE Special Needs Planning and is here to chat with us about involving siblings in the guardianship and decision-making process. Phillip shares the importance of having open conversations early on with siblings about guardianship and gives advice about getting the conversation started. He dives into the differences between guardianship and supported decision-making and the importance of personalizing decisions for each individual’s needs. Phillip shares his journey and experience with his sister, Sarah, who has Down syndrome, emphasizing how beneficial it has been for his family to have a plan, open communication, and involvement of the entire family in the process of planning for Sarah’s future. Friends, we know there are so many what-ifs to the future of having a loved one with Down syndrome, this episode gives valuable tips and resources on approaching a plan for the future.

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You know and love her as the bubbly blonde that breaks into song on nearly every episode, today our girl Micha Boyett isn’t just The Lucky Few Podcast host, she’s our guest!! Join us in celebrating her new book Blessed Are The Rest Of Us (available April 9th!)! We’re chatting about her journey of writing this book, and how she chose to write more than just a memoir. What does it mean to be “blessed”? What makes us worthy? What makes life good? Micha shares how her journey with Ace’s Down syndrome and Autism diagnosis made her see society’s obsession with success for what it actually is: fear of vulnerability. In finding language to push against society’s intrinsic ableism she found the connection in the Beatitudes, an ancient sacred text. She explores the concept of worthiness and the good life inviting us to reconsider the meaning of blessing and envision a world where everyone’s worth is recognized. It’s an honor to celebrate our magnificent friend’s work, this is an episode you don’t want to miss!

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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.

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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!!!

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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!

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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!!

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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! 

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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!

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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! 

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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.

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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!

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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!

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