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

Tuesday Jun 02, 2020

11. The Responsibility and Power of Words on Social Media - Rachel Mewes

Tuesday Jun 02, 2020

Our Interview with Rachel Mewes to discuss her interactions with Twitter and their reluctance to combat hate speech toward people with Down Syndrome.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/02/11-the-responsibility-and-power-of-words-on-social-media-interview-with-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.

Thursday May 28, 2020

10. Our Interview with Melissa Kynoch - Part 1

Thursday May 28, 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/2020/05/27/10-our-interview-with-melissa-kynoch-part-1/2/
BBC 'Life and Birth: https://www.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4
Makaton: https://wetalkmakaton.org
The Makaton Charity on Twitter: https://twitter.com/MakatonCharity
Makaton with Lucinda on Twitter: https://twitter.com/makatonlucinda
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 May 22, 2020

9. Sibling Advocacy - Interview with Sophia Saux

Friday May 22, 2020

An interview with our daughter Sophia to discuss her experiences of having a brother with Down Syndrome.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/21/9-sibling-advocacy-interview-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 May 14, 2020

8. Early Intervention - Interview with Caroline Bencze-Fernandez

Thursday May 14, 2020

Interview with Child Development Specialist, Caroline Bencze-Fernandez. She explains the importance of Early Intervention, how therapies have changed throughout her 30 year career and what parents should know.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/14/8-early-intervention-interview-with-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 May 07, 2020

7. Prenatal Care and Advocacy - Interview with Julie Picot

Thursday May 07, 2020

Interview with Julie Picot discussing her birth story, some of the misinformation she encountered and how she dealt with the post diagnosis fears.
Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/05/7-prenatal-care-and-advocacy-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 Apr 30, 2020

6. Managing The Stresses - The Emotional Parts of Special Needs Parenting

Thursday Apr 30, 2020

This episode focuses on a sometimes challenging aspect of parenting a child with Down Syndrome. The emotional part of dealing with IEPs, assessments and evaluations that seem to happen right around our children's birthday celebrations. We discuss how we managed these stresses and how we maybe would have done some things differently.
Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/30/ep-6-managing-the-stresses/3/
https://www.IfWeKnewThen.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 Apr 23, 2020

5. Preparing For Your IEP - What We Wish We Knew Then

Thursday Apr 23, 2020

In this episode we discuss preparations and expectations of IEP meetings, what we wish we would have known years ago and the advantages of having an advocate or attorney by your side.
Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/24/5-preparing-for-your-iep/3/
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 Apr 17, 2020

Introduction - Our Down Syndrome Advocacy Story

Friday Apr 17, 2020

Hello and welcome to the If We Knew Then Podcast. We are parents of two children and one of them has Down Syndrome, Liam. When Liam was born we didn't know very much about Down Syndrome and most of the information we did have didn't seem very hopeful and positive. Well this podcast aims to share honest and useful conversations about supports, therapies, education and society as it pertains to Down Syndrome parenting.
Full Episode Transcript:Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/23/introduction-our-down-syndrome-advocacy-story/
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.

Sunday Apr 12, 2020

4. In-School Physical Therapy - Down Syndrome - Natalie Spiteri

Sunday Apr 12, 2020

PT in School. Qualifying for services and what to expect with a child with Down Syndrome.
Interview with Pediatric Physical Therapist Natalie Spiteri.
Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/24/4-in-school-physical-therapy-natalie-spiteri/3/
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.

Sunday Apr 12, 2020

3. Early Intervention Physical Therapy - Down Syndrome - Natalie Spiteri

Sunday Apr 12, 2020

Early Intervention PT. What is it? How to get it? What to expect and how can parents of children with Down Syndrome use it to its fullest.
Interview with Pediatric Physical Therapist Natalie Spiteri.
Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/24/3-early-intervention-physical-therapy-natalie-spiteri/3/
Gross Motor Skills for Children With Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome) https://www.amazon.com/dp/1606130099/ref=cm_sw_r_cp_api_i_YYaNEb5AEFWZ3
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.

Sunday Apr 12, 2020

2. All That Annual Stuff - IEP and Assessments

Sunday Apr 12, 2020

Dealing with IEP's and Assessments that seem to happen around our children’s birthdays. Talking through the process of these events in our lives and how they effect all IEP families. Not just those associated with Down Syndrome.
Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/23/2-all-that-annual-stuff-iep-and-assessments/3/
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.

Sunday Apr 12, 2020

1. COVID-19 and IEPs - Special Episode with Georgianna Junco-Kelman

Sunday Apr 12, 2020

What should we do at this time? Are IEP's happening? What should we expect? How does this impact next school year?
We feel fortunate that Liam's Elementary School Team is doing their best to support us in helping Liam access his schoolwork. We know that this is not always the case and that parents are having a lot of questions. We hope this helps to answer some of them. Thank you to Georgianna and the knowledge she shares in this episode.
Special Guest Georgianna Junco-Kelman of https://www.SpecialKidsAttorney.com
Contact your Senator: https://www.senate.gov/general/contact_information/senators_cfm.cfm
Contact your Representative: https://www.house.gov/representatives
Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/23/1-covid-19-and-ieps-special-episode-with-georgianna-junco-kelman/3/
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.

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