The Lucky Few

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...

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...

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 frien...

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) &am...

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!...

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...

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 ev...

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...

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...

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...

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...

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, medica...

“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...

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 docume...

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...

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...

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 yo...

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!...

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...

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 +...

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...

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...

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 ou...

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...

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 al...