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

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.

Thursday Aug 27, 2020

22. A Meditation Gift from Paul Denniston - 30 Minute Yoga Nidra Guided Meditation

Thursday Aug 27, 2020

Paul Denniston has gifted us a 30 minute Yoga Nidra Guided Meditation. Enjoy.
Paul’s Website: https://griefyoga.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/27/22-a-meditation-gift-from-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 Aug 27, 2020

21. A Conversation About Healing and Self Care with Paul Denniston

Thursday Aug 27, 2020

Paul Denniston discusses how we can all heal through meditation and his Grief Yoga.
Paul’s Website: https://griefyoga.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/20/21-a-conversation-about-healing-and-self-care-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.

Tuesday Aug 11, 2020

20. A New School Year: COVID-19, IEPs and Supports - Georgianna Junco-Kelman

Tuesday Aug 11, 2020

Another informative talk with attorney Georgianna Junco-Kelman. What do parents need to know heading into a new school year amidst COVID-19?
Georgianna's Website: http://www.losangelesspecialedattorney.com
CA Special Education Guidelines for COVID-19: https://www.cde.ca.gov/ls/he/hn/specialedcovid19guidance.asp
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/11/20-a-new-school-year-covid19-ieps-supports-georgianna-junco-kelman/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 Aug 06, 2020

19. PALS Programs - Congratulations Project

Thursday Aug 06, 2020

Our interview with members of the PALS Programs. We talk about the organization and specifically their Congratulations Project. Joining us is Co-founder and Executive Director, Jenni Newbury Ross and her mother and brother, Robyn and Jason. We were also joined by Congratulations Project Associate, Grace Wahle and Communications Coordinator, Colton Davies.
Congratulations Project: https://www.congratulationsproject.org
PALS Program: https://www.palsprograms.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/06/19-pals-programs-congratulations-project/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 Jul 23, 2020

18. Project Understood - Part 2 - Two Perspectives of Down Syndrome - Ed Casagrande and Matt MacNeil

Thursday Jul 23, 2020

Our second interview with Ed Casagrande and Matt MacNeil from the Canadian Down Syndrome Society concerning their collaboration with Google AI to create a database that can help train Google’s speech recognition technology to better understand people with Down syndrome.
Donate your voice at: https://projectunderstood.ca
CDSS "Down Syndrome Answers" Initiative: https://cdss.ca/down-syndrome-answers/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/07/23/18-project-understood-part-2-two-perspectives-of-down-syndrome-ed-casagrande-and-matt-macneil/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 Jul 16, 2020

17. Creating a Positive Dental Health Relationship - Dr. Jill Lasky

Thursday Jul 16, 2020

Dr. Jill Lasky discusses the importance of Pediatric Dentistry, how to introduce dental care and specifics pertaining to the Down Syndrome community.
Lasky Pediatric Dental Group: https://www.laskypediatricdental.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/07/16/17-creating-a-positive-dental-health-relationship-dr-jill-lasky/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 Jul 09, 2020

16. Pushing The Limits - Chris Nikic’s Road To IRONMAN

Thursday Jul 09, 2020

Interview with Chris Nikic and his parents, Nik and Patty. Chris is the first person with Down syndrome to complete a half IRONMAN and is training to attempt the full 140.6 mile course in November. We discuss how people with Down Syndrome can do more than ever expected if given the right tools and time.
Chris's Website: https://chrisnikic.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/07/07/16-pushing-the-limits-chris-nikics-road-to-ironman/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 Jul 02, 2020

15. Project Understood - Part 1 - Our Community Conversation with Ed Casagrande and Matt MacNeil

Thursday Jul 02, 2020

Interview with Ed Casagrande and Matt MacNeil from the Canadian Down Syndrome Society concerning their collaboration with Google AI to create a database that can help train Google’s speech recognition technology to better understand people with Down syndrome.
Donate your voice at: https://projectunderstood.ca
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/30/15-project-understood-ed-casagrande-and-matt-macneil-the-canadian-down-syndrome-society/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 Jun 25, 2020

14. An Honest Community Conversation with Julie Picot

Thursday Jun 25, 2020

Our second interview with Julie Picot, a mother of a child with Down Syndrome, and some of the challenges she has faced regarding stereotypes and preconceived notions of her child's disability.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/24/14-an-honest-conversation-interview-with-julie-picot/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 Jun 18, 2020

13. Early Intervention - At Home Tools and Supports - Caroline Bencze-Fernandez

Thursday Jun 18, 2020

Interview with Child Development Specialist, Caroline Bencze-Fernandez. In this second appearance on the podcast, Caroline 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/2020/06/17/13-early-intervention-at-home-tools-and-supports-caroline-bencze-fernandez/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 Jun 11, 2020

12. Our Interview with Melissa Kynoch - Part 2

Thursday Jun 11, 2020

An interview with Melissa Kynoch, known by many for being on the BBC documentary LIFE AND BIRTH along with her sons Dei and Bertie.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/11/12-our-interview-with-melissa-kynoch-part-2/2/
BBC 'Life and Birth: https://www.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4
Wouldn’t Change A Thing:Book- https://www.wouldntchangeathing.org/product/wcat-book-by-celebrate-t21/ FaceBook Page- https://www.facebook.com/wouldntchangeathingdotorg/ Twitter- https://twitter.com/Wouldntchangea1 Website- https://www.wouldntchangeathing.org Email: WCATbook@gmail.com
12 Step Fellowship: https://www.na.org
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.

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