If We Knew Then - Down Syndrome Podcast

About If We Knew Then - Down Syndrome Podcast

We are Stephen and Lori Saux, the hosts of the If We Knew Then podcast and parents of two children. Our youngest, Liam, just happens to have Down syndrome. When Liam was born, we didn’t know very much about Down syndrome, and most of the information we did have wasn’t very hopeful, positive, or truthful. Well, this podcast was created to change that. Through honest conversations with parents, self-advocates, educators, medical professionals, and community leaders, If We Knew Then aims to share stories that break down stereotypes to help redefine what it means to live a life that includes Down syndrome. Each episode is an invitation to see beyond archaic assumptions and into the truth that our children’s lives are full of potential, love and value. This podcast is more than just a podcast; it’s a community where caregivers can find support and encouragement. Where the fears we carry can be met with understanding and where victories, big and small, are celebrated together. Our mission is to empower families to create change through advocacy and to remind the world that inclusion is not only possible but essential... for all of us. We believe in sharing the true experiences that often go unheard and in building a future where every person with Down syndrome writes their own story. Whether you’re a parent just starting this journey, an educator seeking insight or an ally who wants to stand with the Down syndrome community, you belong here. This is where caregivers find connection, love fuels advocacy and the true narrative of Down syndrome is written. Why we started recording: When we began, we did not plan to start a movement. We wanted to make sense of what we were learning as parents. Early on, every appointment focused on what Liam might not do, rather than what he could do with support. We looked for voices that offered perspective and encouragement. Finding few, we decided to record our own. Each episode is structured around a single topic. We have covered medical updates, inclusive education, communication, advocacy in schools, and the transition to adulthood. We approach every conversation as parents asking questions, not experts delivering answers. Over time, the audience has grown into a community that includes families, teachers and professionals who use the podcast to learn from one another. Listeners often contact us to say that the podcast helped them during the first days after receiving a diagnosis. Some teachers have written that the interviews helped them adjust classroom practices to better include students with intellectual disabilities. These specific outcomes show the impact that open and factual discussion can have. What we know now: The name If We Knew Then came from a conversation about hindsight. We often thought about what we would have done differently if we had known more in the beginning. We would have pushed sooner for inclusion and worried less about milestones set by comparison rather than need. Through the podcast, we continue to learn from others who share that same reflection. Parents speak honestly about uncertainty after diagnosis. Educators explain methods that lead to student progress. Doctors describe how life expectancy and quality of care have improved over the past few decades and people with Down syndrome share their true experiences. Concrete facts that replace old fears with knowledge. We know now that advocacy is most effective when it starts with accurate information and cooperation among families, professionals and self-advocates. That belief shapes every episode we record. What advocacy means in practice: Advocacy on our podcast focuses on practical changes. We address how to prepare for Individualized Education Program (IEP) meetings, how to communicate with healthcare providers, how to navigate social situations that can exclude people with disabilities and our realization that living a life with Down syndrome in it, may quite possibly be the best thing to happen to our entire family. The goal is to replace assumptions with information. For example, speech and occupational therapists have described the importance of early intervention programs backed by research. Self-advocates have discussed how workplace inclusion improves both independence and confidence. Parents have shared how support networks reduce isolation and increase access to accurate resources. The stories collected through If We Knew Then form a record of how Down syndrome advocacy continues to change. Decades ago, most children with Down syndrome were not included in general education classrooms. Now, federal law and better understanding of differentiated instruction have made inclusion more common. Hearing firsthand accounts of this progress helps new families understand what is possible. An ongoing conversation: If We Knew Then is available on all major podcast platforms. Each episode is ad-free and open to anyone interested in Down syndrome, inclusive education or family advocacy. We continue to record from our home in California and produce new episodes several times each month. Our purpose remains clear: to provide accurate information, document lived experiences and encourage inclusion in schools and communities. By sharing practical advice and real examples, we hope to motivate our community to be the authors of their own stories and let the past misperceptions and stereotypes fade away.

Publisher

Stephen and Lori Saux

Category

education · kids & family

Language

en

Explicit

No

First episode

13 Apr 2020

Latest episode

21 Aug 2026

Latest episodes

27 of 209 episodes have a transcript.

1. 

   21 Aug 2026TRANSCRIPT

   208. Changes To Special Education And How We Continue To Advocate with Stephanie Hall Meredith

   Disability advocate Stephanie Hall Meredith discusses changes in special education and disability rights with hosts Stephen and Lori, empowering listeners with advocacy knowledge and historical context.

2. 

   9 Aug 2026TRANSCRIPT

   207. The Back-to-School Anxiety No One Talks About in Special Education

   Hosts Stephen and Lori Saux discuss the unspoken back-to-school anxiety faced by special education families, offering validation and shared experience for navigating IEPs and advocacy.

3. 

   24 Jul 2026

   206. A Pediatrician Answers All Your Down Syndrome Questions

   Pediatrician Dr. Mona Patel Gera and host Lori discuss practical advice for navigating a Down syndrome diagnosis and the importance of individualized support plans.

Inside a recent episode

208. Changes To Special Education And How We Continue To Advocate with Stephanie Hall Meredith

Published 21 Aug 2026 · Transcript excerpt

[…] How does that open the door to step backwards? So I think the problem is to the overall trend we're seeing. So it's the movement. from having disability, you know, special education in the Department of Education and moving it over to Health and Human Services. So we call, we have the medical and the social model of disability. So the medical model says that a disability is like a problem to be fixed. And in some cases, there's some truth to that. If my kid has a heart defect, I want them to have surgery to repair that. So there is an element of truth in that. And we do cover medical issues for people with disabilities through Health and Human Services. […]

Who has been a guest on If We Knew Then - Down Syndrome Podcast

Names identified in recent episode analyses. Showing up to five guests.

• Stephanie Hall Meredith
• Dr Mona Patel Gera
• Micah Kessel
• Sophia
• Brian Skotko

Reach and audience

Public platform figures. Ratings count people who left a rating, not total listeners.

YouTube views

26,465,573

Score snapshot 15 Sept 2025

Apple Podcasts (US)

5.0 / 5

112 ratings

Podcast Authority Score: 76 / 100

A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.

Quality

61

Social presence

94

YouTube

86

Engagement

93

Contact If We Knew Then - Down Syndrome Podcast

Guest appearances

Books guests

Based on episode analysis; this does not confirm that the show is currently accepting guests.

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Questions about If We Knew Then - Down Syndrome Podcast