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 ..read more

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 chi ..read more

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 Do ..read more

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 ..read more

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 th ..read more

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 adulthoo ..read more

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 ..read more

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 per ..read more

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, participa ..read more

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 be ..read more