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.

Why we started recording:

What we know now:

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:

An ongoing conversation:

Listen on:

Video Version of

IF WE KNEW THEN

CLICK HERE to watch the podcast.

Episodes

Saturday Aug 30, 2025

190. Advocating Through The Challenges Of A New School Year

Saturday Aug 30, 2025

In this episode, we discuss the challenges of a new school year and how we advocate to create a foundation of support for Liam, with the intentions of creating a narrative of inclusion.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/08/30/190-advocating-through-the-challenges-of-a-new-school-year/2/
Please follow us on X @ifweknewthenPOD, you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. Also join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Aug 24, 2025

189. Let’s Talk About Transitions - Middle School to High School

Sunday Aug 24, 2025

In this episode Stephen and Lori sit down on a quiet summer morning to reflect on the season of transitions, both for their family and for their son Liam, who just graduated middle school. From the stillness of summer mornings to the in-between spaces of growth, they talk about what it means to be present during times of change, the challenges and beauty of navigating education with a child who learns differently and the lessons we can take from something as simple and profound as a caterpillar’s metamorphosis. Along the way, they share honest reflections on judgment, resilience, and the hope that comes from remembering that every transition, messy as it may be, is also a space for transformation.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/08/24/189-lets-talk-about-transitions-middle-school-to-high-school/2/
Please follow us on X @ifweknewthenPOD, you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. Also join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Monday May 26, 2025

188. Preparing for Annual Appointments

Monday May 26, 2025

Every year we face the stresses of annual appointments and assessments. Today we talk about game plans and strategies to help prepare for them.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/05/26/188-preparing-for-annual-appointments/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday May 11, 2025

187. Happy Mother's Day!

Sunday May 11, 2025

Happy Mother’s Day to all the mothers in this beautiful Down syndrome community. You are a force and we thank and celebrate you.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/05/11/187-happy-mothers-day/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday May 04, 2025

186. Life and Birth on Amazon Prime with Melissa Kynoch

Sunday May 04, 2025

This week we are revisiting our interview with Melissa Kynoch, known by many for being featured on the BBC documentary LIFE AND BIRTH. Millions of people have had a chance to watch her positive attitude in the face of her son Bertie's Down syndrome diagnosis. Now, five years later, the docu-series is available in the United States on Amazon Prime.
Season 1, Episode 6: https://www.amazon.com/gp/video/detail/B09LCDLPFV/ref=atv_dp_share_cu_r
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/05/04/186-life-and-birth-on-amazon-prime-with-melissa-kynoch/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Apr 27, 2025

185. Disability Pride and Self-Worth with Vaish Sarathy

Sunday Apr 27, 2025

In this episode we discuss the need and power for us to cultivate self pride and worth within the disability community. In doing so, we nullify the damaging words and opinions of those who wish to label and minimize individuals with disabilities or anyone for that matter.
Episode Transcript:
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Friday Apr 18, 2025

184. The Adolescent Brain with Christina Aries - Part 2

Friday Apr 18, 2025

Today we are joined again by Mrs. Christina Aries, the Director of Adult Development at Citizens of the World Charter Schools for the second part of our discussion about brain development in the adolescent years.
Episode Transcript:
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Thursday Apr 03, 2025

183. The Adolescent Brain with Christina Aries - Part 1

Thursday Apr 03, 2025

Today we are joined by Mrs. Christina Aries, the Director of Adult Development atCitizens of the World Charter Schools for a two-part discussion about brain development in the adolescent years.
Episode Transcript:
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Thursday Mar 20, 2025

182. World Down Syndrome Day - March 21, 2025

Thursday Mar 20, 2025

It’s World Down Syndrome Day 2025 and we did it! We released an episode on March 21st. Many in our community do so well at preparing for this day every year and we greatly appreciate them but also, here’s to all those that feel like they are always behind or that their ‘to do” list is getting bigger, not smaller. We celebrate you and your loved ones today!
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/03/20/182-wdsd-2025/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Mar 02, 2025

181. Olivier and Hilda Bernier and Their IEP Experience

Sunday Mar 02, 2025

This week we have another conversation with filmmakers Olivier and Hilda to discuss their IEP experience featured in their film FORGET ME NOT: INCLUSION IN THE CLASSROOM. These talks not only shows us that we are not alone in this fight, but also gives us some powerful information that we can use in our own IEP meetings.
Documentary Website: https://forgetmenotdocumentary.com
Streaming FREE On tubi: https://tubitv.com/movies/697442/forget-me-not-inclusion-in-the-classroom?utm_campaign=web-sharing
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/03/02/181-olivier-and-hilda-bernier-and-their-iep-experience/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Monday Feb 24, 2025

180. Liam Turns 15: What Have We Learned In This Journey?

Monday Feb 24, 2025

Happy Birthday Liam! In this week’s episode we discuss the lessons we have learned over the last 15 years in both education, behavior and societal changes.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/24/180-liam-turns-15-what-have-we-learned-in-this-journey/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Sunday Feb 09, 2025

179. Forget Me Not: Inclusion in the Classroom Documentary - Hilda & Olivier Bernier

Sunday Feb 09, 2025

Today we are joined by Hilda and Olivier, who are documentarians of a fantastic film “Forget Me Not”. This film tells the story of our children’s fight for an equal education and raises the question of inclusion versus segregation. It’s a documentary that is so important to making changes in the lives of individuals with Down syndrome.
Website: https://forgetmenotdocumentary.com
Streaming FREE On tubi: https://tubitv.com/movies/697442/forget-me-not-inclusion-in-the-classroom?utm_campaign=web-sharing
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/09/179-forget-me-not/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Thank you for listening!

We are so happy that we can connect with people from all over the world and we appreciate you. If you would be so kind to rate, subscribe and comment where ever you listen to podcasts, it would help us reach an even larger audience.

All the best to you and please stay in touch. Stephen and Lori Saux