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

Monday Nov 16, 2020

34. How To Use The Summertime To Your Advantage

Monday Nov 16, 2020

The summer is a time to play and relax but if you use it as a time to front load for the coming school year, as well, it can be that academic advantage you have been looking for.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/16/34-how-to-use-the-summertime-to-your-advantage/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 Nov 13, 2020

33. Our Congratulations Message to New Parents

Friday Nov 13, 2020

We originally created this podcast to support parents of children with Down syndrome and this episode is directed specifically to new parents who have just recently received their child’s diagnosis. Our message is of hope and possibility in a world which often offers very little.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/13/33-our-congratulations-message-to-new-parents/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 Nov 05, 2020

32. Changing Our World - Chris Nikic’s 1% Philosophy

Thursday Nov 05, 2020

Chris joins us again with his parents, Nik and Patty to discuss how they have changed their approach to learning and how that has prepared Chris to do things no person with Down syndrome has ever done before.
Chris’s Website: https://chrisnikic.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/05/32-changing-our-world-chris-nikics-1-philosophy/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 Oct 29, 2020

31. Using The Arts To Tell Your Story - A Conversation with Nic Novicki

Thursday Oct 29, 2020

Nic joins us again to talk about the Easterseals Disability Film Challenge and letting your voice be heard through the arts.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/29/31-using-the-arts-to-tell-your-story-a-conversation-with-nic-novicki/2/
The Easterseals Disability Film Challenge: https://disabilityfilmchallenge.com
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 Oct 22, 2020

30. Down Syndrome Awareness Month: Working Together To Change Perceptions

Thursday Oct 22, 2020

In honor of Down Syndrome Awareness Month we discuss our part, as a community, in changing the perceptions of Down syndrome through our thoughts and words. We also look back on some lessons we have learned from past guests.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/22/30-down-syndrome-awareness-month-working-together-to-change-perceptions/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 Oct 15, 2020

29. Insights Into Our First COVID-19 IEP Session

Thursday Oct 15, 2020

We just had our first Zoom IEP session since the pandemic started and we have found several new things that parents should be aware of. We also further discuss ways to prepare for these meetings and touch on questions every parent should ask their IEP team.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/15/29-insights-into-our-first-covid-19-iep-session/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 Oct 08, 2020

28. A Story of Inclusion with Eleanor Baggaley – ‘Ava the Mermaid’

Thursday Oct 08, 2020

Our conversation with author, wife, mother of three and Down syndrome advocate, Eleanor Baggaley. We discuss inclusion and her children’s books, particularly ‘Eva the Mermaid’. Eleanor also shares about her work with the organization Positive About Down Syndrome and some of her future plans of advocacy in the community.
Eleanor’s Website: https://www.eleanorbaggaley.com/shop
Positive About Down Syndrome: https://positiveaboutdownsyndrome.co.uk
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/08/28-a-story-of-inclusion-with-eleanor-baggaley-author-of-ava-the-mermaid/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 Oct 01, 2020

27. Our IEP Process - Some Things We Have Learned

Thursday Oct 01, 2020

IEP's can be very overwhelming especially when you feel like you don't have all the information that you want to have. In this episode we share some of the things we have learned to be helpful during this sometimes stressful process and ways to advocate for your child while still keeping your peace.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/28/27-our-iep-process-somethings-we-have-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.

Thursday Sep 24, 2020

26. PALS Programs - A Deeper Conversation About Down Syndrome

Thursday Sep 24, 2020

Our second interview with members of the PALS Programs. We talk about how the PALS Programs is planning for future camps and some of the more personal experiences the founders of the organization have with Down syndrome. Joining us is Executive Director, Jenni Newbury Ross and her mother Robyn and brother Jason. We were also joined by Congratulations Project Associate, Grace Wahle and Communications Coordinator, Colton Davies.
PALS Program: https://www.palsprograms.org
Congratulations Project: https://www.congratulationsproject.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/24/26-pals-programs-a-deeper-conversation-about-down-syndrome/2/
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website 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 Sep 17, 2020

25. A Right to Celebrate - When the Medical Profession Steals the Joy of New Parents - Rachel Mewes

Thursday Sep 17, 2020

Our second interview with Rachel Mewes. Rachel is a contributing editor to Making Chromosomes Count, the Down syndrome community newspaper. She opens up on her not so uncommon birth story and the prejudices she found in the medical profession.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/17/25-a-right-to-celebrate-when-the-medical-profession-steals-the-joy-of-new-parents-rachel-mewes/2/
Making Chromosomes Count: http://makingchromosomescount.co.uk
Making Chromosomes Count on Twitter: https://twitter.com/ChromosomesNews
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 11, 2020

24. The Importance of Disability Inclusion in Film - Nic Novicki

Friday Sep 11, 2020

Comedian, actor, producer and disability advocate Nic Novicki joins us to talk about the Easterseals Disability Film Challenge and the importance of disability inclusion in film.
Film Challenge Website: https://disabilityfilmchallenge.com
Our 2020 EDFC entry: https://youtu.be/WiX-rt51szo
All the challenge’s films on YouTube: https://www.youtube.com/playlist?list=PLOhZ4i5Tnk3iq44Tzn03rBMOcr0bqFrnV
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/11/24-the-importance-of-disability-inclusion-in-film-nic-novicki/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 Sep 03, 2020

23. Raised by a Father with Down Syndrome - Our Community Conversation with Sader Issa

Thursday Sep 03, 2020

Our enlightening and inspiring interview with Sader Issa. As parents we are always told what our children will never do. What if those limits were not part of the conversation?
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/03/23-raised-by-a-father-with-down-syndrome-our-interview-with-sadar-issa/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