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! Whoa! So today we’re chatting about all the things that medical providers should know when they deliver a diagnosis (tip #1: don’t start with “I’m so sorry”) PLUS all the t...
Sep 27, 2022•43 min
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 th...
Sep 20, 2022•54 min
Did you know? 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 ques...
Sep 13, 2022•44 min
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 @happinessisdownsyndrome on Instagram! She’s a mama of two, includin...
Sep 06, 2022•1 hr
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 ye...
Aug 30, 2022•51 min
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 ...
Aug 23, 2022•1 hr
We know that going #BackToSchool isn’t always easy.. so we’re here to support you! 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 in...
Aug 16, 2022•43 min
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. Today, Heather is in the hot seat to answer all of our questions! We’r...
Aug 08, 2022•40 min
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 ...
Aug 02, 2022•1 hr 2 min
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 an...
Jul 26, 2022•39 min
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...
Jul 19, 2022•49 min
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 da...
Jul 12, 2022•50 min
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 childr...
Jul 05, 2022•43 min
“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,...
Jun 28, 2022•1 hr 3 min
Jazmine Faries is a woman with Down syndrome who is the focus of Iron Family, a documentary directed and produced by Patrick Longstreth. Today on the podcast, we have Jazmine herself, along with her brother Chad, and the film director, Patrick! For the last seven summers, Jazmine has written extraordinary plays based on her celebrity alter-ego that her family performs each year. Iron Family documents the process of making one of Jazmine’s newest plays: Double Life, which of course features Matth...
Jun 21, 2022•1 hr
Rick Smith is a father of three (including Noah who has Down syndrome), a blogger, an advocate, and the founder of Hope Story! Like so many of us in the DS community, his child’s diagnosis was delivered with an “I’m so sorry,” followed by the doctor offering anti-depressants to his wife. And now, 11 years later, Rick is on a mission to change what happens in the delivery room by educating medical professionals about what it means to live with Down syndrome through his non-profit, Hope Story. Tod...
Jun 14, 2022•51 min
School’s out for summer! When it comes to this time of year.. the excitement for all sorts of activities is at an all time high! But what happens if your kids can’t just fit in at church camp? Or if they need accommodations during swim lessons? Where can our children with disabilities enjoy their summer activities safely? Where will be they included? And what will we do if they aren’t included? So many questions for us to consider! That’s why today we’re chatting about strategies for summer fun....
Jun 07, 2022•48 min
As parents of children with Down syndrome, we’ve sat through too many school meetings and doctors appointments walking away feeling the world thinks our kid is not enough just because they haven’t met other people’s expectations. And we know that’s not true but how DO we measure success for our children with DS? Maybe you’ve learned to not compare your child to their peers without DS but how do you keep yourself from comparing them to their peers who also have DS? We asked tons of mothers these ...
May 31, 2022•45 min
So what happens when someone with Down syndrome graduates high school? When the structure and support from the education system ends, what begins? Today we’re talking about inclusive employment for adults with Down syndrome with our very own, Val Schlieder! She recently earned her doctorate degree in occupational therapy, produces this podcast, and is also very involved in her local DS community! As part of her OT schooling, she created an employment-prep program for adults with DS that focused ...
May 24, 2022•58 min
You’ve probably seen the recent debates about abortion in the news and on social media. We’re not here to get political but these debates do give us the opportunity to call out a huge issue: people on both sides see individuals with disabilities as less than human. And today we’re talking about it (as best as we can). Because we acknowledge the amount of support it takes to raise a child with Down syndrome and the way that having certain privileges makes things a little simpler. And we also know...
May 17, 2022•47 min
Did you know that individuals with Down syndrome are frequently denied organ transplants? Just because they have a disability. We can’t believe this is a thing that’s still happening, but we are SO glad that there are people pushing back on this discrimination. Today in this episode, we are sharing two very important interviews with some extraordinary activists: Charlotte Woodward (NDSS employee + self-advocate w/DS), Bart Devon (senior director of public policy at NDSS), & Christy Sellers (...
May 10, 2022•59 min
Raise your hand if you’ve ever felt alienated by the pressure to practice “self-care!” (We know we have). And today as Mother’s Day approaches, we’re chatting about the trouble with many self-care practices and giving our own definitions to this popular term. As parents of kids with disabilities, most of us already feel like we’re at max capacity, so how can we schedule in a yoga session or weekly date night? We can’t just leave our kids with any babysitter and take off for the evening. Don’t wo...
May 03, 2022•50 min
It’s no secret that far too often, our loved ones with Down syndrome are seen as “problems” to be “fixed,” individuals in desperate need of “healing” or medicine.. whatever that might be. While we know this is NOT the case, our society’s love of “perfection,” prescriptions and productivity has ALL of us chasing unattainable goals of “success.” But what if we pursued healing instead? Today we have Amy Julia Becker, a wife, mother, and author, on to discuss family, faith, and disability. And she’s...
Apr 26, 2022•57 min
When you receive your child’s Down syndrome diagnosis, your mind imagines a thousand different scenarios for how their life will go.. but what happens when we consider their siblings? What happens when they realize that the world won’t always be kind to their sibling with Down syndrome? Are they annoyed with each other because that’s their sibling or because they have Down syndrome? How do help our kids connect with one another? We’re chatting about all things SIBLINGS today! Join us as we discu...
Apr 19, 2022•56 min
Markeisha Hall is a mother to 4, including her autistic son, a former special educator, an IEP expert, a podcaster, and so much more! And today she’s joined us to chat all about practical tips to take with you to your next IEP meeting (hint: send notes to the WHOLE team ahead of time, bring someone with you, & stay focused). Plus, she’s giving us insight into the minds of the teachers as they prepare for IEP meetings and sharing about why it’s important for parents to chat with each other ab...
Apr 12, 2022•1 hr 1 min
Hey friends, it’s April! And in honor of April being Autism Acceptance Month, we’re chatting about Micha’s journey parenting Ace, her son with a dual diagnosis of Down syndrome and autism. And before we get started, we want to just say that we’re not experts on this topic and we are approaching it as learners. That’s why we’re grateful for the many autistic adults who share their stories for us all to learn from! And we appreciate your grace as we navigate this conversation too. So join us as we...
Apr 05, 2022•56 min
We’re fresh off of the excitement of World Down Syndrome Day and we LOVE seeing all the ways our community advocates to celebrate our loved ones on 3/21. But does anyone else ever feel a little (okay a LOT) of pressure during these busy months, especially when it comes to advocating online? Does it ever seem like everyone is doing more? Or like all the good ideas are already taken? Today we’re chatting about how the scarcity mindset hurts our community and how we can support our fellow advocates...
Mar 29, 2022•45 min
Happy World Down Syndrome Day! And happy 3 year (or maybe 4 year??) anniversary to our podcast! If you listen.. you’ll see that we’re still really not sure. Annnyway, today in honor of 3/21, we are chatting all about.. well pretty much everything! Because we have a special Q and A from each of you. Join us for a chat about what educators should know about our kids, how we balance our family dynamic for siblings without Down syndrome, and of course.. our #WDSD plans! Happy 3/21, friends. Hug your...
Mar 21, 2022•1 hr 2 min
We talk all the time about the importance of story telling when it comes to shifting the Down syndrome narrative.. but how do we actually do that?! What if we’re not an influencer? What if we don’t have a stage or online platform? We’ve all thought things before.. but what if we told you that the most transformative stories are actually told around a dinner table? Today we are chatting with Katie Quesada, a speaker, storytelling coach, and Heather’s friend of many years! As someone so close to T...
Mar 15, 2022•44 min
Today we are joined by Jo Lopez, a fellow lucky mama + IRL assistant to Heather Avis! Jo has made it her mission to find community within the Down syndrome space and today she’s sharing all about how she’s found her people. It started with an early (and confusing) diagnosis, an overwhelming google search, and then a sweet Facebook message that changed everything! We’re also chatting about finding your people in-person, the right time to join an online group, and how having a child with DS shapes...
Mar 08, 2022•55 min
