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 Oct 07, 2022

118. The Best We’ve Got: The Carl Erskine Story with Ted Green

Friday Oct 07, 2022

Documentarian, Ted Green visits with us to discuss his most recent film “The Best We’ve Got: The Carl Erskine Story”. As a teammate and close friend of Jackie Robinson and then as the father of a person with Down syndrome, Carl played a pioneering role in two human-rights movements.
Our guest, Ted Green switched to filmmaking in 2010 after 20 years as a newspaper journalist, and since then he has produced and directed eight documentaries. Other subjects include Holocaust survivor Eva Kor, and Indianapolis’ Crispus Attucks High School.
Website: https://www.carlerskinefilm.com
EPIC Website: http://soindiana.org/EPIC
EPIC Promo (3:30): https://vimeo.com/710911325/b293dfbb38
“The Fan Connection”: https://www.fanconnectionmovie.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/06/118-the-carl-erskine-story-with-ted-green/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 Sep 30, 2022

117. Having The Patience To Be Where You Are - A Conversation with Karen Maezen Miller

Friday Sep 30, 2022

In this week's episode we are joined by Zen Buddhist Priest, Maezen Miller. We discuss having patience and letting go in order for it to all unfold. Believing and having patience can enable our children to be who they are, go where they go and do what they do, to become exactly who they are.
Karen Maezen Miller: https://karenmaezenmiller.com
Maezen’s Book on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1
Steve & Michel Gleason Foundation: https://teamgleason.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/30/117-patience-with-karen-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.

Friday Sep 23, 2022

116. Mother Asana: “The Art and Voice of Autism” with Gina Uricchio

Friday Sep 23, 2022

Mother Asana merges the focus of Ally’s art and expression with Gina’s yoga practice and meditation insights. Gina is a devotee to her Spiritual Practice for over 20 years influenced by many practitioners & styles. Her trainings landed her teaching Slow Flow Yoga, YOGA for Cancer & Mindfulness for the Special Parent. Creating Connection is the cornerstone to her parenting & personal style. In her journey as a ‘warrior mom,’ Meditation & Asana has been instrumental in understanding & healing while raising a family with a special needs.
Website: https://www.motherasana.com/
Pre-Order the book: https://www.motherasana.com/shop/the-art-and-voice-of-autism
Instagram: @mother_asana
FaceBook: @motherasana
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/23/mother-asana-the-art-and-voice-of-autism-with-gina-uricchio/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 Sep 09, 2022

115. Functional Nutrition with Dr. Vaish Sarathy

Friday Sep 09, 2022

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.
Website: https://functionalnutritionforkids.com
Constipation Tool Kit: https://functionalnutritionforkids.com/constipationtoolkit
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/08/115-functional-nutrition-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 Sep 02, 2022

114. Liam Goes To Middle School: Leaving The Past Behind Us

Friday Sep 02, 2022

We have learned a lot, some harsh realities and beautiful truths. We now move forward with eyes wide open, ready to learn from where we have been, into the unknown of middle school.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/02/114-liam-starts-middle-school/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 Aug 19, 2022

113. Student Led IEPs to Determine Ones Own Path of Self-Advocacy with Ellen Coulston

Friday Aug 19, 2022

The discussion on Self Determination in episode 83, developed into an examination of the term “Self Determination” and what it means in the scope of determining ones self and ones path. In this episode with Ellen Coulston we discuss Self Determination as a tool to promote independence, confidence and participation by student led IEP planning, making that student a part of the dialogue instead of a 3rd person participant in a conversation about their life goals.
I’m Determined: https://www.imdetermined.org
LifeCourse: https://www.lifecoursetools.com/
Ellen’s Podcast: ieproadtofreedom.com
Ellen on Twitter: https://twitter.com/EllenRita220
CA Transition Alliance: http://www.catransitionalliance.org/catransitionalliance.aspx
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/08/18/113-student-led-ieps-to-determine-ones-own-path-of-self-advocacy-with-ellen-coulston/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 Aug 12, 2022

112. Seeing The Whole Child: Our Conversation with Licensed Child Psychologist Dr. Beverly Celotta

Friday Aug 12, 2022

In this conversation we sit down with Dr. Beverly Celotta. Bev is a retired Licensed Child Psychologist who shares her knowledge about how to set all children up for success.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/08/11/112-dr-beverly-celotta/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 Aug 05, 2022

111. Kicking Down Barriers: Our Conversation with College Kicker Caden Cox

Friday Aug 05, 2022

In this episode we sit down with Caden Cox and his parents, Mari and Kevin, to talk about their history making and game changing journey to inclusion. Caden is the first person with Down syndrome to play as well as score in a NCAA/NJCCA College football game.
Caden’s JakeMax Collection: https://www.jakemax.com/collections/cadens-collection
'NEVER, is not in My Vocabulary' College Paper: https://www.dropbox.com/s/vm0d2tjtqs1r5ss/NEVER%2C%20is%20Not%20in%20My%20Vocabulary.pdf?dl=0
Caden’s College Power Point Presentation: https://www.dropbox.com/scl/fi/7jo7jh80mjs9ir7gmko77/Informative-Speech-Bill-of-Rights.pptx?dl=0&rlkey=trfd9vsx23xcenee826r3jv13
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/08/05/111-kicking-down-barriers-our-conversation-with-college-kicker-caden-cox/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 Jul 29, 2022

110. The Future of Research and the Hope on the Horizon with Eric Rubenstein

Friday Jul 29, 2022

This week we have a wonderful conversation with Dr. Eric Rubenstein, an Assistant Professor in the Department of Epidemiology at Boston University. We discuss equality and inclusion in research as it pertains to Down syndrome.
Eric’s Website: https://sites.bu.edu/rubenstein/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/29/110-the-future-of-research-and-the-hope-on-the-horizon-with-eric-rubenstein/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 Jul 22, 2022

109. Parenting Is Parenting: A Conversation with Paul and Kerry Daugherty

Friday Jul 22, 2022

Today we have an open and candid conversation with the author of ‘An Uncomplicated Life’ Paul Daugherty and his wife Kerry about their approach to early education, college, dating, sex, marriage and lots of other things we are told our kids won’t do. ‘An Uncomplicated Life’ 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
Our First Episode with the Daugherty’s (Episode 90): https://ifweknewthen.podbean.com/e/90-an-uncomplicated-life-a-father-s-memoir-of-his-exceptional-daughter-with-paul-and-kerry-daugherty/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/22/109-parenting-is-parenting-a-conversation-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.

Friday Jul 15, 2022

108. Playground of Empathy and Empathable with Micah Kessel

Friday Jul 15, 2022

In this episode we find a way to inclusion through empathy. Our conversation with Micah Kessel was an empowering and insightful discussion offering ways to focus our advocacy and to come from a more nurturing and loving place. Micah is the creator of Empathable and Playground of Empathy. These organizations work nationally with world-renowned academics to bridge science, technology, and art to amplify the intersectional experiences of the underserved at your place of business or learning.
Empathable: https://empathable.com
Playground of Empathy: https://empathable.com/playground/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/14/108-playground-of-empathy-micah-kessel/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 Jul 08, 2022

107. Graduating Elementary School: A Culmination of What We Learned

Friday Jul 08, 2022

Liam graduated from elementary school, on curriculum, in an inclusive classroom with his peers. We reflect on the moments that led to his accomplishment and what we could have done better if we knew then.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/07/107-graduating-elementary-school-a-culmination-of-what-we-learned/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