EPISODES

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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Friends, we had so many incredible conversations in 2023, before we kick off a new season we’re throwing it back to some of our favorite episodes as we get excited to hit a milestone of ONE MILLION DOWNLOADS in 2024! 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!

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Friends, we had so many incredible conversations in 2023, before we kick off a new season we’re throwing it back to some of our favorite episodes as we get excited to hit a milestone of ONE MILLION DOWNLOADS in 2024!

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’re not going to want to miss our conversation on this hot topic!

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Friends, we had so many incredible conversations in 2023, before we kick off a new season we’re throwing it back to some of our favorite episodes as we get excited to hit a milestone of ONE MILLION DOWNLOADS in 2024!

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!

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Friends, we had so many incredible conversations in 2023, before we kick off a new season we’re throwing it back to some of our favorite episodes as we get excited to hit a milestone of ONE MILLION DOWNLOADS in 2024!

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!

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We had so many incredible conversations in 2023, before we kick off a new season we’re throwing it back to some of our favorite episodes as we get excited to hit a milestone of ONE MILLION DOWNLOADS in 2024! 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.

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Friends, we had so many incredible conversations in 2023, before we kick off a new season we’re throwing it back to some of our favorite episodes as we get excited to hit a milestone of ONE MILLION DOWNLOADS in 2024!

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!

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