254. The Next Step: Navigating Healthcare Transitions for Individuals with Down Syndrome (w/ Dr. Emily Johnson) 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 ...
Apr 23, 2024•52 min
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...
Apr 16, 2024•1 hr 3 min
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 ea...
Apr 09, 2024•46 min
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 syndrom...
Apr 02, 2024•1 hr
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...
Mar 26, 2024•56 min
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 p...
Mar 20, 2024•1 hr 5 min
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...
Mar 12, 2024•58 min
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 Securi...
Mar 05, 2024•1 hr 8 min
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 amazi...
Feb 27, 2024•57 min
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...
Feb 21, 2024•1 hr 2 min
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 ...
Feb 13, 2024•59 min
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 aski...
Feb 06, 2024•49 min
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 re...
Jan 30, 2024•58 min
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 re...
Jan 23, 2024•39 min
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 ...
Jan 19, 2024•1 hr 9 min
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 uncomfo...
Jan 18, 2024•54 min
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 experie...
Jan 17, 2024•50 min
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....
Jan 16, 2024•51 min
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 ...
Jan 15, 2024•49 min
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 al...
Jan 12, 2024•1 hr 12 min
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 Sar...
Jan 11, 2024•55 min
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...
Jan 10, 2024•1 hr 2 min
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!...
Jan 09, 2024•51 min
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 phy...
Jan 08, 2024•46 min
Friends, we're kicking off the new year with a bang! In our exciting sixth-season premiere, join us as we dive into the festivities, reflections, and dreams that come with the arrival of 2024. We're sharing our favorite traditions and bidding farewell to everything we left behind in 2023. Ever wondered about our New Year's Eve and New Year’s Day shenanigans? We spill the beans on the NYC ball drop, the bathroom dilemmas, and why we've never braved the waiting game for those glittering lights. Jo...
Jan 02, 2024•52 min
And just like that, we’re wrapping up our 5th season! 2023, what a year! We’re coming close to ONE MILLION DOWNLOADS, we had listeners in 36 countries, and 64% of listeners discovered us this year! Welcome new and old friends, we’re glad each and every one of you is here, shouting worth and shifting narratives for people with Down syndrome! We’re so grateful we get to connect and have so many incredible guests and conversations on the show. Today, we’re reflecting on the incredible conversations...
Dec 26, 2023•59 min
Friends, grab your workout pants because this episode is all about the positive effects of health, and wellness, and how fitness is for everyone—especially our loved ones with DS. We’re thrilled to talk with TruFit’s founders, John & Adam White, on the show! Today they share how in 2010, they identified an unmet need within the fitness community, prompting them to establish TruFit Adaptive Fitness. Thirteen years later, their solution is clear: TruFit Adaptive Fitness uses technology to prov...
Dec 19, 2023•55 min
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 adv...
Dec 12, 2023•57 min
Friends, we’re so excited to have licensed therapist and grief expert, Claire Bidwell Smith on the show to give us some tools and resources for coping with the grief that comes with a Down syndrome diagnosis. Led by her own experiences with grief, and fueled by her work in hospice and private practice, Claire strives to provide support for all kinds of people experiencing grief and is devoted to expanding the conversation around grief and loss. We’re chatting about tools and strategies for grief...
Dec 05, 2023•59 min
Happy, sad, angry, frustrated, excited, it’s not always easy to know how to express these feelings, especially for our kiddos with Down syndrome. Today we’re talking about all those “big feelings” that can be hard to regulate at times. We’re chatting about how we’ve been working on helping our kiddos handle all those “big feelings” and so much more. How we’ve had to become a “detective” of our kiddo's feelings and learned to recognize how some of them can be affected by nutrition, sleep, activit...
Nov 28, 2023•55 min
