The Lucky Few

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.

• Why stories about “overcoming” disability can create pressure for people with Down syndrome and their families.

• Questions to help us advocate for belonging across all abilities and support needs.

Questions for our community this Down Syndrome Awareness Month:

• Are we challenging low expectations—or accidentally replacing them with a new kind of pressure?

• Are we celebrating a person, or using that person to prove something?

• Does our public advocacy represent the breadth of the Down syndrome community, including people with significant disabilities?

• Can we celebrate achievement without making it the measure of a good life?

• Whose version of a good life are we fighting for?

• Do we believe belonging is something people earn through capability, or something they deserve from the very beginning?

Plus, Good News is back! Micha shares how Ace’s first youth retreat became a weekend full of friendship, joy, and belonging.

Keep the conversation going: Listen to Episode 338 on presuming competence and Episode 337 on belonging and inclusion.

Thank You to Our Sponsors

Down For Greens creates practitioner-formulated, third-party-tested greens specifically designed with the nutritional needs of the Down syndrome community in mind.

Learn more: downforgreens.co
Promo code: LUCKY — get 50% off your first order.

ENABLE Special Needs Planning helps families create coordinated plans for the future by bringing together the vision, financial, legal, and practical pieces of special needs planning.

Free resource: Who Will Carry What? Download it here.

“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.

• How behavior or limited speech can obscure a person’s interests, needs, and desire for connection.

• What it looks like to offer age-appropriate opportunities while providing real support.

Related listening: Episode 337 on belonging and inclusion, Episode 335 on autonomy, and Episodes 313–314 on apraxia and motor planning.

Thank You to Our Sponsors

Down For Greens creates practitioner-formulated, third-party-tested greens specifically designed with the nutritional needs of the Down syndrome community in mind.

Learn more: downforgreens.co
Promo code: LUCKY — get 50% off your first order.

ENABLE Special Needs Planning helps families create coordinated plans for the future by bringing together the vision, financial, legal, and practical pieces of special needs planning.

Free resource: Who Will Carry What? Download it here.

“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

• What genuine belonging looks like in schools, churches, friendships, and activities

• How adults can intentionally create spaces where every person is known, supported, and valued

  
  

  Want to learn more about inclusion, community, and what it takes to create true belonging? Keep the conversation going with these episodes:

  • 280. Can a Person With Down Syndrome Find Community & Belonging?
  • 324. What We Wish We’d Known About Inclusion
  • 326. What We Wish We’d Known About Loneliness

  
  

  
  

  -----------------------------------------------------

  Thank You to Our Sponsors

  Down For Greens creates practitioner-formulated, third-party-tested greens specifically designed with the nutritional needs of the Down syndrome community in mind.

  Learn more: ⁠⁠⁠https://downforgreens.co⁠⁠⁠

  Promo code: LUCKY — get 50% off your first order.

  ENABLE Special Needs Planning helps families create coordinated plans for the future by bringing together the vision, financial, legal, and practical pieces of special needs planning.

  Free resource: Who Will Carry What?Download: ⁠⁠⁠https://ENABLEsnp.com/the-lucky-few⁠⁠⁠

  Don’t forget to follow, subscribe, and leave a review wherever you listen to The Lucky Few Podcast. We love hearing how these conversations are meeting you and your family.

  Here’s to shifting the narrative for people with Down syndrome.

Disability policy can feel complicated and overwhelming—but these decisions directly affect the healthcare, education, services, and civil rights of people with disabilities.

Today, Heather is joined by attorney, IEP expert, and longtime friend of the podcast Ashley Barlow. Together, they break down current changes and challenges surrounding Section 504, community living, Medicaid, and special education—and explain why families need to pay attention.

In this episode:

• What current policy changes could mean for disability rights and community-based services
• What’s happening with Section 504, the Olmstead decision, and the Department of Education
• How families can advocate by contacting legislators, sharing their stories, and following trusted disability organizations

The issues are complex, but one truth remains clear: disabled people belong in our schools, neighborhoods, workplaces, and communities—without having to earn or prove their worth.

Learn more from Ashley:

• The Collaborative IEP,
• Follow Ashley: @thecollaborativeiep

Listen to previous episodes with Ashley:

• 131. Preparing for the School Year: IEPs + Special Education

• 273. Breaking Down Barriers: The Parent’s Role in IEP Success
• 292. What’s Going on With the Department of Education?
• 294. Why Down Syndrome Isn’t Something to “Cure” 298. What’s Going on With the Department of Education? Part 2
• Bonus: The Fight for 504—Why Disability Rights Are on the Line

-----------------------------------------------------

Thank You to Our Sponsors

Down For Greens creates practitioner-formulated, third-party-tested greens specifically designed with the nutritional needs of the Down syndrome community in mind.

Learn more: ⁠⁠https://downforgreens.co⁠⁠

Promo code: LUCKY — get 50% off your first order.

ENABLE Special Needs Planning helps families create coordinated plans for the future by bringing together the vision, financial, legal, and practical pieces of special needs planning.

Free resource: Who Will Carry What?Download: ⁠⁠https://ENABLEsnp.com/the-lucky-few⁠⁠

Don’t forget to follow, subscribe, and leave a review wherever you listen to The Lucky Few Podcast. We love hearing how these conversations are meeting you and your family.

Here’s to shifting the narrative for people with Down syndrome.

What does it look like to truly honor the autonomy of adults with Down syndrome?

Today we’re joined by our former producer, occupational therapist, sibling, and advocate Val Schlieder to talk about autonomy, infantilization, and the dignity of risk.

We explore why protecting people with Down syndrome from every possible risk can actually limit their independence, the difference between risk and genuine danger, and how we can support our loved ones in making their own choices.

From everyday decisions to navigating adulthood, Val challenges us to assume competence, make room for choice, and provide support without taking away autonomy.

In this episode, we discuss:

• Infantilization, autonomy, and the dignity of risk
• The difference between protecting someone and limiting their independence
• Practical ways to assume competence and support everyday choice and self-determination

Learn more from Val Schlieder

• ⁠Have questions: Email Val

• Follow Val on Instagram

Listen to previous episodes with Val Schlieder:

• Episode 43 — Back to School & All Things Best Buddies w/ Val Schlieder & Allison Covell
  Listen / Episode Page
• Episode 162 — What Happens After High School? (Ft. Val Schlieder — OT + Producer)
  Listen / Episode Page

-----------------------------------------------------

Thank You to Our Sponsors

Down For Greens creates practitioner-formulated, third-party-tested greens specifically designed with the nutritional needs of the Down syndrome community in mind.

Learn more: ⁠https://downforgreens.co⁠

Promo code: LUCKY — get 50% off your first order.

ENABLE Special Needs Planning helps families create coordinated plans for the future by bringing together the vision, financial, legal, and practical pieces of special needs planning.

Free resource: Who Will Carry What?Download: ⁠https://ENABLEsnp.com/the-lucky-few⁠

Don’t forget to follow, subscribe, and leave a review wherever you listen to The Lucky Few Podcast. We love hearing how these conversations are meeting you and your family.

Here’s to shifting the narrative for people with Down syndrome.

Back-to-school season brings more than new supplies and schedules—especially when you’re raising a child with Down syndrome. There are IEPs, appointments, transportation plans, medical information, therapies, emails, paperwork, and approximately 47 things nobody else in your house seems to remember.

Today, Heather sits down with professional organizer, Enneagram coach, and fellow Down syndrome mom Angela O’Brien to talk about creating organization that supports the life you actually have.

Angela explains why disability families often carry more physical and mental clutter, how delayed decisions contribute to the overwhelm, and why the goal isn’t a Pinterest-perfect home. She shares realistic systems for managing incoming paperwork, organizing digital records, simplifying morning and after-school transitions, and helping our kids become more independent.

Whether you create one place for every incoming paper, lower a backpack hook so your child can reach it, or spend five minutes tackling one drawer, small changes can give your family more time, energy, and capacity.

Friends, you don’t need to overhaul your entire life. Start small, build systems around your family’s natural rhythms, and give yourself some grace along the way.

Learn more from Angela:

• Your Space Reclaimed
• Listen to the Especially Organized Podcast
• Follow Your Space Reclaimed on Instagram

-----------------------------------------------------

Thank You to Our Sponsors

Down For Greens creates practitioner-formulated, third-party-tested greens specifically designed with the nutritional needs of the Down syndrome community in mind.

Learn more: https://downforgreens.co

Promo code: LUCKY — get 50% off your first order.

ENABLE Special Needs Planning helps families create coordinated plans for the future by bringing together the vision, financial, legal, and practical pieces of special needs planning.

Free resource: Who Will Carry What?
Download: https://ENABLEsnp.com/the-lucky-few

Don’t forget to follow, subscribe, and leave a review wherever you listen to The Lucky Few Podcast. We love hearing how these conversations are meeting you and your family.

Here’s to shifting the narrative for people with Down syndrome.

When ⁠Misty Coy Snyder ⁠received a prenatal Down syndrome diagnosis during the early days of the pandemic, fear and uncertainty shaped much of her pregnancy. But when her son Jed was born, the joy she experienced changed everything—and eventually inspired the community known as Happiness Is Down Syndrome.

Misty returns to the podcast to talk about her new book, ⁠Happiness Is Down Syndrome: Strategies and Support for Parents at Every Stage. ⁠Designed as a practical companion for families, the book brings together personal stories, expert guidance, helpful resources, and the voices of people with Down syndrome. It covers everything from diagnosis, grief, and early intervention to IEPs, inclusion, advocacy, sibling relationships, and adulthood.

Misty and Heather discuss holding grief and joy at the same time, taking each season as it comes, and why parents don’t need to figure everything out alone. They also explore what “happiness is Down syndrome” really means—not a life without difficulty, but a life filled with deep connection, ordinary joys, and unexpected goodness.

This is an encouraging conversation for parents, educators, extended family, and anyone who loves someone with Down syndrome.

Show Notes:

Learn more about Misty at ⁠MistyCoySnyder.com⁠

Follow Misty ⁠@MistyCoySnyder ⁠

Follow ⁠@HappinessIsDownSyndrome⁠

--------------------------------------------

Thank You to Our Sponsors

Down For Greens creates practitioner-formulated, third-party-tested greens specifically designed with the nutritional needs of the Down syndrome community in mind.

Learn more: ⁠https://downforgreens.co⁠ Promo code: LUCKY — get 50% off your first order.

ENABLE Special Needs Planning helps families create coordinated plans for the future by bringing together the vision, financial, legal, and practical pieces of special needs planning.

Free resource: Who Will Carry What? Download: ⁠https://ENABLEsnp.com/the-lucky-few⁠

Don’t forget to follow, subscribe, and leave a review wherever you listen to The Lucky Few Podcast. We love hearing how these conversations are meeting you and your family.

Here’s to shifting the narrative for people with Down syndrome.

Back-to-school season can bring a lot more than new backpacks, school supplies, and first-day photos—especially when you’re raising a child with Down syndrome.

In this episode, Heather, Micha, and Mercedes talk honestly about the complicated feelings that come with starting a new school year. From new teachers and IEP meetings to inclusion, friendships, behaviors, and the pressure to make sure our kids have the opportunities they deserve, sometimes “back-to-school anxiety” is really a mix of fear, grief, frustration, comparison, and the exhaustion of knowing how much advocacy may be ahead.

Micha shares about preparing for Ace’s transition to middle school and advocating for the movement and sensory support his body needs to learn—and even to sleep. Mercedes opens up about the unexpected pressure she feels as Sunflower enters seventh grade and the milestones she thought they might have reached by now. And Heather shares the weight of sending Macyn into her senior year after an incredibly difficult school experience, while still fighting for something every student deserves: to be a meaningful part of their school community.

They also talk about the comparison trap—especially when social media makes it look like everyone else’s child is having the school experience you hoped your child would have—and the reminder that we rarely know the whole story.

But this conversation isn’t about pretending everything will be fine. It’s about making room for the hard while still holding onto hope.

Maybe we don’t need to have everything figured out before the first day. Maybe we can simplify our goals. Maybe instead of measuring a successful year by achievement, we can ask:

Is my child known?
Do they have a friend?
Are they included?
Do they know they belong?

And when the world outside our homes doesn’t always get inclusion right, we can still create homes where our kids know without question that they are valued, adored, and that they belong.

• Why back-to-school season can bring unique anxiety for families raising kids with Down syndrome, including emotions like grief, comparison, and uncertainty

• Real-life transitions and advocacy: new school years, changing grades, and supporting sensory, social, and inclusion needs

• Reframing success and belonging by focusing on inclusion, self-worth, and creating supportive, radically inclusive home environments

You don’t have to have everything figured out before the first day.

You can change course when something isn’t working. You can ask questions. You can advocate. You can feel nervous. And you can hope for a good year without pretending that some parts of it may be hard.

Your child’s worth is not measured by their progress.

Here’s to a school year where our kids aren’t simply present—but known, valued, included, and loved.

--------------------------------------------

Thank You to Our Sponsors

Down For Greens creates practitioner-formulated, third-party-tested greens specifically designed with the nutritional needs of the Down syndrome community in mind.

Learn more: ⁠https://downforgreens.co⁠

Promo code: LUCKY — get 50% off your first order.

--------------------------------------------

ENABLE Special Needs Planning helps families create coordinated plans for the future by bringing together the vision, financial, legal, and practical pieces of special needs planning.

Free resource: Who Will Carry What? Download: ⁠https://ENABLEsnp.com/the-lucky-few⁠

Don’t forget to follow, subscribe, and leave a review wherever you listen to The Lucky Few Podcast. We love hearing how these conversations are meeting you and your family.

Here’s to shifting the narrative for people with Down syndrome.

Episode 331: We’re Back! Catching Up on a Big Summer in the Down Syndrome Community

We’re back! After a three-month summer break, we’re catching up on some of the biggest conversations, stories, and moments that happened across the Down syndrome community while we were away.

We start with a difficult conversation surrounding YouTuber Jesse Ridgway and his wife Ashley, who publicly shared their prenatal Down syndrome diagnosis and decision to terminate their pregnancy. We talk about the weight of sharing deeply personal moments online, the pressure advocates can feel to respond publicly, and the misinformation and fear that still surround a Down syndrome diagnosis.

We also discuss the importance of how we narrate the lives of people with Down syndrome—not through tragedy or inspiration, but through the fullness of their humanity.

Then we turn toward some of the encouraging stories we saw this summer, including Texas Rangers usher and dancing queen Hannah Speirs, Rachel McKay Bailey’s perspective on expecting a baby with Down syndrome, and the DeOndra Dixon INCLUDE Project Act supporting Down syndrome research.

We also remember Born This Way star Christina Sands and the legacy she leaves behind.

And finally, we’re sharing some good news from our own families: Ace reaching a new level of independence, Sunflower’s first mother-daughter pedicure, and Macy turning 18.

We missed you, friends. We’re glad to be back.

Links:

Hannah Speirs — Texas Rangers Dancing Queen
TikTok: https://www.tiktok.com/discover/hannah-speirs-texas-rangers

Rachel McKay Bailey — Pregnancy & Down Syndrome
The Times: https://www.thetimes.com/life-style/parenting/article/pregnancy-downs-syndrome-motherhood-gzkfrh7mb

Amy Julia Becker — Responding to the Jesse Ridgway Controversy
https://amyjuliabecker.com/who-gets-to-tell-our-story-of-down-syndrome/

DeOndra Dixon INCLUDE Project Act
GLOBAL Down Syndrome Foundation:
https://www.globaldownsyndrome.org/deondra-dixon-include-project-act/

Thank You to Our Sponsors

Down For Greens creates practitioner-formulated, third-party-tested greens specifically designed with the nutritional needs of the Down syndrome community in mind.

Learn more: https://downforgreens.co
Promo code: LUCKY — get 50% off your first order.

ENABLE Special Needs Planning helps families create coordinated plans for the future by bringing together the vision, financial, legal, and practical pieces of special needs planning.

Free resource: Who Will Carry What?
Download: https://ENABLEsnp.com/the-lucky-few

Don’t forget to follow, subscribe, and leave a review wherever you listen to The Lucky Few Podcast. We love hearing how these conversations are meeting you and your family.

Here’s to shifting the narrative for people with Down syndrome.

Stories & Resources MentionedIn This EpisodeThank You to Our SponsorsDown For GreensENABLE Special Needs PlanningConnect With Us

In this final episode of our “What I Wish I Knew” series, we’re taking a step back to reflect on advocacy—what it’s looked like for us over the years, what’s changed, and what we wish we understood earlier.

We talk honestly about the emotional weight of advocating for our kids with Down syndrome, the tension of speaking up in systems that don’t always listen, and the growth that comes from learning to trust your instincts.

From early parenting moments to IEP meetings and navigating social media, this conversation explores the complexity of advocacy—how it evolves, where it gets messy, and why it’s never just one moment, but a lifelong process.

We also dig into how advocacy has shifted in the age of social media—the connection it brings, but also the pressure, comparison, and confusion around what it’s supposed to look like.

If you’ve ever felt overwhelmed, unsure, or alone in advocating for your child, this episode offers perspective, honesty, and encouragement.

• Why advocacy is unavoidable as a parent of a child with Down syndrome
• Learning to trust your gut—even when “experts” disagree
• The emotional reality of speaking up and pushing back
• How advocacy evolves over time and gets more complex
• Social media: connection, pressure, and comparison
• Redefining what advocacy actually looks like

Advocacy isn’t about doing more or being louder—it’s about staying grounded in your “why,” trusting your instincts, and showing up for your child over time.

What We CoverKey Takeaway

🎧 More on Advocacy

• Episode 101: Jalondra Davis on Race, Disability, & Advocacy
  https://podcasts.apple.com/us/podcast/the-lucky-few/id1349646917?i=1000508421336

• Episode 262: 45 Years of Advocacy — A Conversation with Kandi Pickard
  https://podcasts.apple.com/us/podcast/the-lucky-few/id1349646917?i=1000660264316

• Episode 17: Self Advocacy — Down Syndrome in DC (with Kayla McKeon)
  https://podcasts.apple.com/us/podcast/the-lucky-few/id1349646917?i=1000425139176

• Episode 172: Defining Ableism, Allyship & Advocacy + Redefining “Inclusion” (with Priya Lalvani)
  https://podcasts.apple.com/us/podcast/the-lucky-few/id1349646917?i=1000574499987

• Episode 256: Celebrating Motherhood, Advocacy, & Community (with Black Down Syndrome Association)
  https://podcasts.apple.com/us/podcast/the-lucky-few/id1349646917?i=1000654745623

• Throwback: Unlearning the Advocacy Language
  https://podcasts.apple.com/us/podcast/the-lucky-few/id1349646917?i=1000504975552

Let’s Keep the Conversation Going

Are you using functional medicine with your child—or just starting to look into it? Feeling overwhelmed or unsure where to begin? We’d love to hear from you.

Find us on Instagram: ⁠@theluckyfewpod⁠