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 09, 2021

70. Insights of a Teenage Sibling: with Sophia Saux

Thursday Sep 09, 2021

In this first installment of a three part sibling series, we sit down with our 14 year old daughter, Sophia, to talk about her experiences as a sibling of a brother with Down syndrome.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/09/insights-of-a-teenage-sibling-with-sophia-saux/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 02, 2021

69. Uncertainties About the Return to School? You’re Not Alone.

Thursday Sep 02, 2021

As we return to school to find a new unknown, we may find ourselves facing familiar challenges and feelings. In this episode we discuss the importance of a support system that reminds us we are never alone.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/02/69-uncertainties-about-the-return-to-school-youre-not-alone/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 26, 2021

68. The Importance of Special Needs Trusts and a Conservatorship: with Enrique Perez

Thursday Aug 26, 2021

What is the purpose of a Special Needs Trust? What is a Living Will? How do I set up a Conservatorship when my loved one is an adult? How much does all this cost? Attorney and advocate, Enrique Perez, sits down with us to answer all these questions and more on this extremely informative episode for the entire disability community.
Perez Law Group: www.perezlawgrp.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/26/68-the-importance-of-conservatorships-and-a-special-needs-trust-with-enrique-perez/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 19, 2021

67. The Beginner’s Mind: An Interview with Karen Maezen Miller

Thursday Aug 19, 2021

We have the honor again of visiting with Zen Buddhist Priest, Karen Maezen Miller, to discuss the Zen term of a “beginner’s mind” which means an open, innocent and non-judging mind, the mind we bring to everything we do when we are beginners.
Maezen’s website: https://karenmaezenmiller.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/17/66-the-beginners-mind-an-interview-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.

Thursday Aug 12, 2021

66. A Conversation About Alzheimer’s with Dr. Brian Skotko

Thursday Aug 12, 2021

In this episode we visit with Dr. Brian Skotko again and talk about the impact of Alzheimer’s in the Down syndrome community and we discuss some pro-active steps that may help to improve the long-term wellness for people with Down syndrome.
Down Syndrome Brain Train: https://www.downsyndromebraintrain.com
Down Syndrome Clinic: https://www.dsc2u.org
Tar Heel Reader Book Collection: https://tarheelreader.org
Find A Nutritionist Near You: https://www.eatright.org
Dr. Brian’s Book “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters”: https://www.woodbinehouse.com/product/fasten-seatbelt-crash-course-syndrome-brothers-sisters/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/11/66-a-conversation-about-alzheimers-with-dr-brian-skotko/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 05, 2021

65. The Down Syndrome Resource Foundation, Part 2 with Liv Meriano and Danielle McKinney

Thursday Aug 05, 2021

This week is part two of our conversation with Liv Meriano and Danielle McKinney, from the Down Syndrome Resource foundation based in British Columbia, Canada. In this episode we continue the discussion on education, supports, inclusion and changing the mindset and approach to supporting students to access the curriculum and reach their potential.
Foundation Website: www.DSRF.org
Baskets of Love: https://www.basketsofloveds.com/
Learn at Home: https://www.dsrf.org/programs-&-resources/learn-at-home-5196/
DS Education International education guidelines: https://workdrive.zohoexternal.com/external/8CkAlci1QBB-Jxfap
The LowDOWN Podcast: https://www.dsrf.org/programs-&-resources/the-lowdown-podcast/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/05/65-the-down-syndrome-resource-foundation-part-2-with-liv-meriano-and-danielle-mckinney/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 29, 2021

64. Changing Our Mind and Approach to Education: Down Syndrome Resource Foundation

Thursday Jul 29, 2021

In this week’s episode we are joined by Danielle McKinney and Liv Meriano from the Down Syndrome Resource Foundation to talk about educational tools and strategies parents can use at home and implement in their child’s school IEP.
Foundation Website: www.DSRF.org
Baskets of Love: https://www.basketsofloveds.com/
Learn at Home: https://www.dsrf.org/programs-&-resources/learn-at-home-5196/
DS Education International education guidelines: https://workdrive.zohoexternal.com/external/8CkAlci1QBB-Jxfap
The LowDOWN Podcast: https://www.dsrf.org/programs-&-resources/the-lowdown-podcast/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/29/64-the-down-syndrome-resource-foundation/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 22, 2021

63. Just One Of The Guys: Our Interview with Jake Pratt

Thursday Jul 22, 2021

In this week’s episode Lori and Stephen visit with Jake Pratt, who with a little support, advocacy and inclusion is living his dreams and changing the narrative.
Jake’s UPS Commercial: https://youtu.be/fw97dqK6uiM
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/22/63-just-one-of-the-guys-our-interview-with-jake-pratt/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 15, 2021

62. Summer Advocacy: The Challenge Of Letting Go And Taking A Break

Thursday Jul 15, 2021

In this week’s episode Lori and Stephen discuss the sometimes difficult action of letting Summer just be Summer.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/01/62-summer-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.

Thursday Jun 24, 2021

61. Hearts Of Joy International: Our Conversation with Lauren Costabile

Thursday Jun 24, 2021

In this week’s episode we speak to Lauren Costabile, the founder of Hearts of Joy International, an organization that provides life-saving heart surgery for individuals with Down syndrome all around the world.
Website: www.heartsofjoyinternational.com
Amazon Wishlist: https://www.amazon.com/hz/wishlist/ls/1C1P8TA1C8NBU/ref=nav_wishlist_lists_1?_encoding=UTF8&type=wishlist
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/23/61-hearts-of-joy-international-with-lauren-costabile/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 17, 2021

60. Downright Discrimination - Changing The Laws To Confirm That Every Life Is Equal

Thursday Jun 17, 2021

Today we interview Máire, Heidi and Liz about their ‘Downright Discrimination’ legal campaign which fights to change the law of the land and create equality for people with disabilities. Presently, in the U.K., it is illegal to abort a fetus after 24 weeks unless it has Down's syndrome. A baby with Down syndrome can be aborted up to birth. We examine the effect this inequality has on our community by creating separation and discrimination that follows us through life. We also talk about ways we can support the cause of changing the laws.
Give to the campaign: https://www.crowdjustice.com/case/downrightdiscrimination/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/17/60-downright-discrimination-changing-the-laws-to-confirm-that-every-life-is-equal/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 10, 2021

59. Education, Adolescence and Advocacy: A Community Conversation with Mary Cole

Thursday Jun 10, 2021

Today we have a ‘Community Conversation’ with advocate Mary Cole discussing her inspiring experience with inclusion. Mary lives in Cambridge, England and has a 14 year old son with Down syndrome named Ben.
Ben’s Nursery: https://www.colourboxmontessori.co.uk/
Online Session On Puberty: https://www.downs-syndrome.org.uk/our-work/services-projects/training/
Email 'Wouldn't Change A Thing' at WCATbook@gmail.com for this book: https://www.wouldntchangeathing.org/product/wcat-book-by-celebrate-t21/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/10/59-education-adolescence-and-advocacy-a-community-conversation-with-mary-cole/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