297. Extracurricular Activities and Inclusion: How to Make it Work For Our Kids with DS

Here we are, halfway through October and Down Syndrome Awareness Month, revisiting a conversation that's just as relevant today as when we first released it in July 2022. We've all seen those viral “feel-good” videos featuring people with disabilities. But are these stories actually celebrating people with Down syndrome, or are they reinforcing harmful stereotypes? Building on our conversation in EP 339 about what we really want people to be aware of this month, we're throwing it back to EP 169 to explore the harm of “inspiration p*rn” and why the stories we share matter. In this episode, we're talking about: Why viral “inspirational” disability stories can sometimes do more harm than good.

Throwback: What Do You Wish You Knew When You Got Your Child's Down Syndrome Diagnosis? (Ep. 138) It's Down Syndrome Awareness Month, and we're heading back into the archives for a conversation that's just as relevant today as when we first recorded it. What do you wish you knew when you first received your child's Down syndrome diagnosis? In this throwback episode, Heather, Micha, and Mercedes reflect on the things they wish they could tell their younger selves and why the stories we tell about Down syndrome matter so much. Too often, a diagnosis comes with a focus on limitations, challenges, and what a child may or may not be able to do. But that's only part of the story. This conversation reminds us that awareness means sharing a fuller, more honest picture of life with Down syndrome—one that makes room for both the hard and the beautiful. In this episode, we're talking about: What we wish we'd known when we first received our children's Down syndrome diagnoses.

People with Down syndrome deserve belonging, opportunity, and dignity—without having to prove their worth through achievement. To kick off Down Syndrome Awareness Month, Heather and Micha ask what happens when advocacy becomes centered on accomplishments. They share honestly about comparison, parenting expectations, and telling a fuller story that makes room for the entire Down syndrome community. In this episode: How to celebrate achievement without making it the measure of someone’s worth.

“Presume competence” is a phrase we hear often in the disability community. But what does it mean when someone also needs significant support? This week, Heather and Micha talk through the tension between believing there may be more happening than we can see and honoring a person exactly as they are. They share stories about school routines, communication, reading, and friendship—and ask what changes when we lead with curiosity instead of assumptions. In this episode: Why presuming competence starts with seeing someone’s full humanity, rather than measuring what they can do.

“Inclusion says you’re allowed to be here. Belonging says this is your place.” In this episode, we’re exploring the difference between being included and being genuinely known, wanted, and valued. We share real-life examples from school, church, dance, friendships, and community spaces—and discuss why simply offering access or accommodations isn’t enough. True belonging means our kids don’t have to earn their place or change who they are to fit in. It means creating communities that recognize they are better because our kids are part of them. In this episode: Why inclusion without belonging can still leave people feeling unseen