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

Friday Mar 18, 2022

94. Assuming Intelligence: Changing the Narrative of Down Syndrome with Dr. Vaish Sarathy

Friday Mar 18, 2022

Today we are joined by Dr. Vaish Sarathy to discuss her Non-Linear Education method and to explore the positive affects that assuming intelligence has on all students regardless of presumed abilities.
Non-Linear Education: www.functionalnutritionforkids.com/nonlineareducation
Her TEDx talk "Who decides how smart you are'' where she talked about the value of Assuming Intelligence.
Vaish is a Functional Nutrition Practitioner and Science Educator. She is the founder of Functional Nutrition for Kids, and Plum Pudding Chemistry, both practices designed to optimize the learning potential of kids with Down Syndrome and/or Autism using both Functional Medicine and Non-Linear Education Principles.
She comes to Functional Nutrition with a mission to reframe health, cognition and optimal function for children with disabilities. Her perspective is shaped by her non-speaking 14 year old son, who is (in his words) an Autist with Down Syndrome - a published poet, writer, and budding advocate.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/03/18/94-assuming-intelligence-changing-the-narrative-of-down-syndrome-with-dr-vaish-sarathy/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 Mar 11, 2022

93. Willie Dawkins: Desegregation and the Foundational Ingredients in the Fight for Inclusion

Friday Mar 11, 2022

In 1969 Willie Dawkins was finishing first grade when his mother received a letter saying he would be transferring into a desegregated school the following year. In this episode we honor his story, his parents who gave him a foundation of love and support he needed to find his way through an unjust world and the advocates who came before us who fought for equality and laid the groundwork for our fight for inclusion.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/03/11/93-desegregation-and-the-foundational-ingredients-in-the-fight-for-inclusion/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.

Thursday Feb 24, 2022

92. Liam Turns Twelve: A Mother’s Message

Thursday Feb 24, 2022

This week Lori shares thoughts on Liam’s twelfth birthday.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/24/92-liam-turns-twelve-a-mothers-message/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.

Thursday Feb 17, 2022

91. Valentine’s Week: Changing Hearts & Minds About Education

Thursday Feb 17, 2022

This week we talk about our personal experience discussing education and inclusion with someone we love who is of the belief that educating our children is asking 'extra' of the school system. We also talk about our new IEP and a story that demonstrates: it is a change of heart that will change the mind that can change the world.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/17/91-valentines-week-changing-hearts-minds-about-education/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.

Thursday Feb 10, 2022

90. An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter with Paul and Kerry Daugherty

Thursday Feb 10, 2022

This week we are joined by Paul and Kerry Daugherty to discuss Paul’s book about his daughter, Jillian. It is a book we wish we would have found earlier with the beautiful message of “expecting instead of accepting”. Whether you have a person with Down syndrome in your life or not, this book should be one you read and then share with others.
Paul's Book: https://www.amazon.com/Uncomplicated-Life-Fathers-Exceptional-Daughter/dp/0062359959
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/10/90-an-uncomplicated-life-a-fathers-memoir-of-his-exceptional-daughter-with-paul-and-kerry-daugherty/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.

Thursday Feb 03, 2022

89. Inclusion at The Sundance Film Festival

Thursday Feb 03, 2022

In this week's episode we discuss perceptions and our experience with Lena Dunham's new film, SHARP STICK, which premiered at the Sundance Film Festival last week and starred Liam Saux. We discuss our concerns with Down syndrome representation, the affects of misperceptions and ultimately the overwhelmingly positive and insightful experience the project was to our entire family.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/03/89-inclusion-at-the-sundance-film-festival/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.

Thursday Jan 27, 2022

88. Healing Through Yoga: Transform Loss Into Empowerment with Paul Denniston

Thursday Jan 27, 2022

We have the privilege of speaking again with our friend Paul Denniston. In this episode we discuss Paul’s new book where he breaks down his practice of healing.
Buy the book: https://www.pauldennistontraining.com/healing-through-yoga
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/2022/01/27/88-healing-through-yoga-transform-loss-into-empowerment-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.

Thursday Jan 20, 2022

87. Downs & Towns: Our Conversation with Houston Vandergriff

Thursday Jan 20, 2022

This week we have a wonderful conversation with photographer Houston Vandergriff and his mother Katie. We discuss education, advocacy, focusing on the positives and the importance of finding your passion. Houston has traveled the world and his pictures communicate its beauty in the most breath taking ways.
Houston’s website: https://www.downsandtowns.com/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/01/20/87-downs-towns-our-conversation-with-houston-vandergriff/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.

Thursday Jan 13, 2022

86. Making Changes And A New Beginning

Thursday Jan 13, 2022

This week we welcome a New Year and a new school. We discuss how the educational system can make us feel and the importance of making a change when we know it’s right. We address the perceptions of failure and how to move forward after feeling broken.
Episode Transcript: https://mcdn.podbean.com/mf/web/qsd29z/86_Making_Changes_And_A_New_Beginning_2bamo1.mp3
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 Dec 30, 2021

85. Happy New Year: The Chromosome Song

Thursday Dec 30, 2021

The full rendition of the If We Knew Then podcast theme song “Chromosome” by Lori Saux and Stephen Saux.
Arrangement and mixing by Brady Harris.
www.BradyHarrisBand.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/30/85-happy-new-year-the-chromosome-song/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.

Thursday Dec 23, 2021

84. Happy Everything To Everyone: A Holiday Message

Thursday Dec 23, 2021

As the year comes to a close, we share a few thoughts on the gifts of the year.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/23/84-happy-everything-to-everyone-a-holiday-message/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.

Thursday Dec 16, 2021

83. The Self Determination Learning Circle at Club 21 with Kelly Kulzer-Reyes

Thursday Dec 16, 2021

Today we explore the Self Determination Program in California with Kelly Kulzer-Reyes of Club 21. Eighteen states in the US have similar personalized programs that distribute state funds in a way to insure that people with disabilities have access to appropriate services throughout their lifetime. An extremely informative episode for those who want to have more control of the state services provided for their loved ones.
Club 21: https://clubtwentyone.org
Disability Voices United: https://disabilityvoicesunited.org
Independent Facilitator groups:
https://www.guidelightgroup.org/about-us
https://www.neuronav.org/
https://www.allycs.org/
DDS website on Self Determination
https://www.dds.ca.gov/initiatives/sdp/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/16/83-the-self-determination-learning-circle-at-club-21-with-kelly-kulzer-reyes/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