EPISODES

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).

Read More

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.

Read More

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!

Read More

“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!

Read More

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! Not only are we chatting about the film, we’re opening up about complicated family dynamics, the search for independence, and even Jazmine’s desire to have children (warning - tears are shed). We hope you enjoy this very honest conversation with these wonderful guests. After you listen, head to all the links in our show notes to support #IronFamilyFilm!

Read More

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. Today we’re chatting about dads who advocate, releasing expectations for ALL of your children, what doctors need to know, and even a few tangents about social media advocacy etiquette (trust us - you’ll relate).

Read More

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.. social stories, email templates for counselors, clear expectations, and MORE. We’re also figuring out our thoughts on sleepovers and just being away from our kiddos in general. There’s a lot to relate to in this one and we hope you do.

Read More

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. 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 questions at the Down Syndrome Diagnosis Network’s Rockin’ Moms Retreat a few months ago and today we’re sharing their answers. And here’s the most important thing we heard: our kids will define their own success. Lets let them do that, friends.

Read More

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 created an employment-prep program for adults with DS that focused on problem solving, social appropriateness, self-advocacy, & so much more. Today she’s sharing about the barriers to inclusive employment (hint: ableism!), the importance of autonomy, all the things people with DS ADD to a workplace, and how parents of young kiddos can start thinking about the future.

Read More

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 that our systems don’t support our children well once they’re born. So much change needs to happen.. and we think changing the perception of Down syndrome is a good place to start. You’re invited to sit in this discomfort and uncertainty with us as we discuss disability, abortion, and the value of a human.

Read More

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 (lucky mama of 4 with DS + advocate). We’re talking about the Charlotte Woodward Organ Transplant Discrimination Prevention Act, Glory’s Law, the fear and ignorance that has caused this discrimination, and the recent tragedies in the DS community that have added momentum to this movement.

Read More

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 worry, we’re not just ranting about our (failed) self-care practices in this episode.. we’re talking about actual ways to nurture ourselves (starting by admitting our limitations as humans), + our thoughts leading up to Mother’s Day. We’re holding the weight of the holiday for anyone who has experienced grief and complications related to it.

Read More

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 prescription medicine 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. We’re so grateful she’s joined us to chat about the gift of having limitations, the intrinsic value of individuals with disabilities, holistic approaches to healing, + more.

Read More

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 discuss what it’s like to parent children with and without DS! We’re talking everything from dividing time between activities and therapies, figuring out how-not-to overburden any of our children, and how to share about DS with your kiddos.

Read More

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. Markeisha also opens up about the process of receiving her son’s autism diagnosis while in the middle of adopting him and what it was like going from a special educator to a parent of an autistic son. We’re so grateful for her powerful story and sound wisdom!

Read More