Posts in General
181. How has your sibling changed your life? (ft. Dana & Anthony Sciullo from the NDSS team)

Ever wondered what sibling relationships will look like when your kids with and without DS are all grown up.. our guests today are giving us a little sneak peek! Plus, we’re getting real about what it’s like to grow up with a sibling who has Down syndrome. We’re chatting about the pressure of being a sibling to someone with a disability, the jealousy you feel when your sibling seems to get more attention, and the guilt you carry for receiving more opportunities than your sibling. There’s a lot to unpack here, friends. But no matter what, we believe that siblings with DS make our lives better. For anyone out there wondering how to foster these sibling relationships, we hope you enjoy this episode!

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180. "You make me better" (An Interview with Carissa Carroll, Founder of Jack's Basket)

Carissa Carroll is a fellow lucky mama on a mission to make sure every baby is celebrated and every family is congratulated. That’s why she started Jack’s Basket, a non-profit organization that hand delivers complimentary gift baskets to families with a new DS diagnosis. And THIS week, they are celebrating their 6,000th baby! Woah! So today we’re chatting about all the things that medical providers should know when they deliver a diagnosis PLUS all the things new parents need to know when they receive the diagnosis. Whether you’re a doctor, expecting parent, or a parent in the DS community already, you’ll find all the resources you need on jacksbasket.org and in this episode.

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179. Disability & The Church

What happens when our kids with disabilities are rejected from a space that claims to offer acceptance and love to all? Has anyone ever prayed that your child would be “healed” from Down syndrome? Can people with disabilities have meaningful relationships with God? We’re asking some tough questions today that all lead back to this one.. how is disability perceived in the church? No matter what you believe about religion, we hope you join us for this important conversation all about ableism in the church, the savior complex, disability ministries, and so much more. Thanks for listening, friends. Let’s keep this conversation going!

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178. Healthy (and happy) Aging for Adults with DS - Ft. Margot & Bart from the National DS Society

The life expectancy for individuals with Down syndrome has increased from age 25 in 1980 to age 60 today. That means that people with DS have more opportunities today than ever before. While we celebrate this growth, we also know that aging brings about new challenges.. How does an extra 21st chromosome increase the likelihood for Alzheimer’s? Do the laws in place to promote healthy aging include adults with DS? What happens when adults with DS outlive their parents? These are questions that have never been asked before. And we’re thankful for organizations like the National DS Society (NDSS) who aren’t afraid to start the conversation! Today on the show we have Margot Rhondeau and Bart Devon from the NDSS to chat about how to support our loved ones with Down syndrome as they age (starting now!), how to be intentional about physical, mental, brain, and social health, and how to celebrate the joys of the aging process!

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177. Happiness IS Down Syndrome (ft. Misty Snyder)

Many of us parents felt a confusing mix of fear, worry, and maybe even a little bit of grief when we received our child’s DS diagnosis. Maybe you felt those things too? We can easily lose the joy of having the baby to the fear of receiving the diagnosis. Today we’re here to tell you that there is SO much happiness on the other side of the diagnosis. And who better to chat about that than our friend, Misty Snyder, the creator of @happinesswithdownsyndrome on Instagram! She’s a mama of two, including Jed, her son with DS. For the last couple of years, she’s been walking new parents through their diagnosis experience. And if that’s you, please know that the way you’re feeling now is not how you will feel forever.

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176. The Ripple Effect (ft. Nancy & GiGi Gianni)

GiGi Gianni is 20 years old. She enjoys singing, dancing, and spending time with her boyfriend. Oh and one more thing, she inspired a global movement! Today we’re talking about THE GiGi behind GiGi’s Playhouse - a network of Down syndrome centers in over 82 countries that offers free programming for individuals with DS across the lifespan. We’re so thankful to have Nancy Gianni (founder of GP) & her daughter GiGi on the show to chat about the evolution of GiGi’s Playhouse over the last 20 years (and how Covid changed everything). Plus, Nancy is sharing some beautiful stories about how she “coincidentally” began advocating for Down syndrome before she ever received GiGi’s diagnosis.

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175. Back to School Listener Q & A!

Friends! We’re headed back to school and we have ALL the feels about it.. especially after the rollercoaster of last year! Maybe you’re feeling this way too?! That’s why today we’re answering all of YOUR questions! What to do when you move to a new district? How to find the right classroom aide? What should homeschooling look like? How to stay on top of an IEP? And MORE. We’ve got it all covered! Plus we’re sharing about the plans for our kiddos this upcoming school year, why we have lawyers on board, using AAC devices at school, and how we’re mentally preparing for it all. We are cheering you on as head back to school!

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174. Learning About the Down Syndrome Learning Profile! (ft. Jessica Kuss from the National DS Society)

We know that going #BackToSchool isn’t always easy.. so we’re here to support you! That’s why we have Jessica Kuss (the Senior Manager of Education Programs for the National Down Syndrome Society - no big deal right!) on today’s episode. She is a mother of 2 (including a son with DS) + a former special educator! Jessica was even part of the team at NDSS who just released the Inclusive Education Guidelines, a document FULL of relevant info for parents and educators. Today, we’re chatting all about what’s inside this document.. everything from the Down syndrome learning profile (knowing about this is a game changer) to the gaps in our IDEA laws, and what on earth we should do with all this info! Who’s ready to rock this #BackToSchool season with us??

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173. EVERYONE BELONGS by Heather Avis (Behind the Scenes of Her NEW Children's Book- Out NOW!)

Friends! Today is the day.. “Everyone Belongs” by Heather Avis is out NOW! It’s a joyful rhyming book that encourages children to not only value all people but to also make room for their differences in order to make a better, brighter, and more beautiful world. “Everyone Belongs” reminds us that it’s possible to make room for all people and all abilities—and that life is brighter when we give every person a chance to shine. And today we’re chatting about everything from the Gap Kids collaboration, how to use this book to teach children about disability, and what able-bodied authors need to consider when writing books about disability.

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172. Defining Ableism, Allyship & Advocacy + Redefining "Inclusion" - ft. Dr. Priya Lalvani

Dr. Priya Lalvani began working with previously institutionalized adults with disabilities in her early twenties.. she later gave birth to her now 20 year old daughter with Down syndrome. She’s been thinking pretty deeply about disability rights for many years and today she’s invited us to do the same. We’re questioning some common practices that might actually be rooted in ableism.. Why do we use the term “fully included?” Why don’t we teach about disability in the classroom? What does it mean to be an advocate vs an ally?

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171. What does belonging actually mean? (Storytelling Tour Recap with Heather + Josh Avis!)

How do we tell the true and real story of what it means to have Down syndrome… That question was the inspiration behind The Lucky Few Foundation and why the Avis family just spent the last MONTH on the road! They travelled over 6,000 miles and collected nearly 300 narrative shifting stories! Along the way, they met so many incredible advocates and individuals with Down syndrome. And today, Heather and Josh are recapping the whole tour! Everything from heartwarming stories to stressful moments and all the memories made in between. We are SO thankful to everyone who supported the tour.

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170. Why I Became A Pediatrician for Individuals with Down syndrome (ft. Dr. Kishore Vellody)

Dr. Kishore Vellody is a pediatrician who runs the Down Syndrome Center of Western Pennsylvania (AKA he has the best job ever), a sibling to his older brother with DS, and a strong advocate amongst medical professionals. We’re so glad he’s joined us today to discuss some important medical information: new guidelines for healthcare from the American Academy of Pediatrics, life expectancy for people with DS, and even delivering the diagnosis. Dr. Vellody also shares about growing up with his older brother, finding out what Down syndrome is (at age 9), and balancing his own life while looking out for his sibling (great tips for parents raising children with and without disabilities in this one).

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169. The Harm in Using People with Disabilities As "Inspiration" in Clickbait Viral Videos

Have you ever heard the term, “inspiration p*rn?” Think of those videos that show a high schooler with Down syndrome winning homecoming queen, or the star quarterback being praised for sitting next to someone with a disability at lunch. Why is the internet so eager to consume these clickbait videos? If you’ve ever encountered an interaction like this that you feeling a little cringey.. this is the episode for you. We’re chatting about what happens when disability is made into a spectacle, the danger in celebrating someone “overcoming” their disability, and the way these viral videos can actually objectify and dehumanize the disability community. Lots to consider in this one, friends. Bottom line: let’s consider our intentions behind what we consume and post.

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168. When is it time to have "the talk" with your child with Down syndrome? (ft. Dr. Katie Frank, PhD, OTR/L)

Raise your hand if you’ve ever felt nervous to have “the talk” with your children.. and especially your children with Down syndrome! (All hands raised over here!) We know it’s a hard conversation but it is SO important. So today our guest is Dr. Katie Frank, an occupational therapist + expert on all things disability and sexuality. She’s here to educate us on boundaries, safety precautions, medical resources, + more. We’re also chatting about parents being the primary sexual educators for children with Down syndrome, how to respect your child’s autonomy, and of course, the general difficulties of adolescence. You might want to take notes on this one!

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167. Raising A #BossLady (ft. Rebecca Kutcher)

“Why not just give it a try?” became Rebecca’s motto as she raised her oldest of three daughters: Trista Kutcher. Today, Trista is a 33-year-old woman with Down syndrome running her own business, living independently, and being a role model to SO many.. including the Avis kids! Heather had the chance to sit down with Trista’s mom, Rebecca, to chat about raising a #BossLady, and you’ll see.. that’s exactly what she’s done. Rebecca is sharing stories about Trista making the high school dance team, the first time she went into the grocery store all by herself, the moment she started her own business, and even her thoughts on inclusive employment. This one has a little bit of everything.. enjoy!

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