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

Sunday Jan 29, 2023

130. Michael Sanford: An Advocate for Diverse Casting in Hollywood - Part 2

Sunday Jan 29, 2023

This is the second half of a two part interview with casting director Michael Sanford about the work being done to make media more inclusive and diverse. We first met Michael when he cast our son, Liam, in the Lena Dunham movie SHARP STICK. Michael had seen Liam in a film made for the Disability Film Challenge where people with disabilities have a space to tell their own stories in the hopes that more spaces like that will be made in Hollywood.
Disability Film Challenge: https://disabilityfilmchallenge.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/29/michael-sanford-an-advocate-for-diverse-casting-in-hollywood-part-2/2/
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 Jan 22, 2023

129. Michael Sanford: An Advocate for Diverse Casting in Hollywood - Part 1

Sunday Jan 22, 2023

This is a two part interview with Hollywood casting director Michael Sanford about the importance of inclusion in everyone's life and the responsibility the film and television industry has to uphold a fabric of diversity that is reflective of our global society.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/22/129-michael-sanford-an-advocate-for-diverse-casting-in-hollywood/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 Jan 16, 2023

128. The Next Generation of Advocacy

Monday Jan 16, 2023

In this episode we discuss the hope we have for the future and the positive changes we see in the next generation of Down syndrome advocates.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/16/128-the-next-generation-of-advocacy/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.

Saturday Jan 07, 2023

127. Revisiting A Loving Kindness Meditation with Paul Denniston

Saturday Jan 07, 2023

We’ve talked about self-care on this podcast and the importance of parents and caregivers to find the time to take care of themselves. We are so grateful that Paul Denniston has once again gifted us, and our listeners, with a guided meditation. This time Paul will guide us through a wonderful Loving Kindness Meditation to help us with the many struggles we can face when we so often put others before ourselves.
Paul’s Website: https://griefyoga.com
Episode 22 - Paul’s 30 Minute Yoga Nidra Meditation: https://ifweknewthen.podbean.com/e/22-a-meditation-gift-from-paul-denniston/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/07/127-revisiting-a-loving-kindness-meditation-with-paul-denniston/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.

Saturday Dec 31, 2022

126. Happy New Year: Revisiting The Practice of The Beginner’s Mind with Maezen Miller

Saturday Dec 31, 2022

Happy New Year! We hope you are all having a wonderfully relaxing and safe holiday. Today in the spirit of the new year, we revisit an interview we had with Karen Maezen Miller about the practice of The Beginner’s Mind.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/12/31/126-happy-new-year-revisiting-the-practice-of-the-beginners-mind-with-maezen-miller/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 Dec 19, 2022

125. A Season of Hope

Monday Dec 19, 2022

In this episode we talk about hope. Losing hope when challenges become overwhelming and finding it again on the other side.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/12/19/125-a-season-of-hope-down-syndrome-advocacy/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 Nov 27, 2022

124. Revisiting with Caroline Bencze-Fernandez Part 2: At Home Tools and Supports

Sunday Nov 27, 2022

Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 2 we re-air Caroline’s second appearance on the podcast where she dives a little deeper into the aspects of Early Intervention, what tools parents can use at home and how therapies for children with Down syndrome have changed over the years.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/27/124-revisiting-with-caroline-bencze-fernandez-part-2-at-home-tools-and-supports/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 Nov 20, 2022

123. Revisiting with Caroline Bencze-Fernandez Part 1: Early Intervention

Sunday Nov 20, 2022

Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 1 we re-air an extremely informative interview with Child Development Specialist, Caroline Bencze-Fernandez where she explains the importance of Early Intervention, how therapies have changed throughout her 30 year career and what parents should know.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/20/123-revisiting-with-caroline-bencze-fernandez-part-1-early-intervention/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.

Tuesday Nov 08, 2022

122. Happy Anniversary: Things We’ve Learned Over 18 Years

Tuesday Nov 08, 2022

It’s our wedding anniversary and we take a minute to reflect on the past 18 years. Happy Anniversary!
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/07/122-our-anniversary-episode/
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 Oct 28, 2022

121. Down Syndrome Awareness Month 2022

Friday Oct 28, 2022

In this episode we discuss our journey with awareness. We explore how we are learning to cultivate what awareness means in our lives, the way in which awareness has changed over the years and its impact on our advocacy.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/28/121-down-syndrome-awareness-month-2022/2/
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.

Friday Oct 21, 2022

120. The Secret Episode - Living For The Moments

Friday Oct 21, 2022

Stephen recorded a solo episode this week, unbeknownst to the family, to express some things that have been on his mind and as a nice surprise to Lori and the kids whenever they come across it. It’s kind of a time capsule episode focused on this present moment and how there is nothing as important as right now.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/21/120-the-secret-episode-living-for-the-moments/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.

Friday Oct 14, 2022

119. Walking The Walk, Breaking Down Stereotypes - with Dr. Eric Rubenstein and Kaethe Sigelko

Friday Oct 14, 2022

This week we talked to Dr. Eric Rubenstein and one of his co-researchers, Kaethe Sigelko to discuss self advocacy and the importance of including people with Down syndrome in shaping our community.
For everything they ever told you your child would not or could not do - sometimes it takes an example of what is possible to remember who we are and that every child’s life is one of possibility.
Eric’s Website: https://sites.bu.edu/rubenstein
Contact Kaethe: k.sigelko1415@gmail.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/14/119-walking-the-walk-breaking-down-stereotypes-with-dr-eric-rubenstein-and-kaethe-sigelko/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