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

Sunday Jun 04, 2023

142. Learning From Our Mistakes: Deconstructing an IEP with Julie Picot

Sunday Jun 04, 2023

In this episode, Julie Picot shares the experience of her latest series of IEP’s meant to usher her daughter Elyse into the Los Angeles Public School system.
LAUSD Complaint Response Unit
Website: https://achieve.lausd.net/Page/3581
Email: EquityCompliance@lausd.net
Phone: (213) 241-7682 TTY: (213) 241-2511
Directions To File A Due Process (PDF): https://achieve.lausd.net/cms/lib/CA01000043/Centricity/domain/168/froms/REF%201410.9%20Attachment%20A%20Directions%20to%20File%20for%20Due%20Process.pdf
Alternate Dispute Resolution (PDF): https://achieve.lausd.net/cms/lib/CA01000043/Centricity/Domain/1220/ADR_Brochure_English_Spanish_6.22.pdf
LAUSD Uniform Complaint Procedures Form (PDF): https://achieve.lausd.net/cms/lib/CA01000043/Centricity/Domain/383/03%20BUL-5159.11%20UCP%20Complaint%20Form_English.pdf
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/06/04/142/2/
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.

Sunday May 28, 2023

141. Julie and Aaron Picot: The First 5 Years of Their Journey with Down Syndrome

Sunday May 28, 2023

In this episode we speak with Araon and Julie, parents of 5 year old Elyse, about the lessons learned, the changes seen and the realizations made from diagnosis till now.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/05/28/141-julie-and-aaron-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.

Sunday May 07, 2023

140. Keeping Up with Bertie - An Update with Melissa Kynoch

Sunday May 07, 2023

In this episode we reconnect with Melissa Kynoch as her son Bertie begins primary school in Birmingham, England. You may remember that Melissa and Bertie were featured on the popular BBC Documentary Series ‘Life and Birth’. Among many things, we discuss the impact inclusion has made in Bertie’s life and the family's journey.
Wouldn’t Change A Thing - https://www.wouldntchangeathing.org
Bookworms Day Care: https://www.facebook.com/profile.php?id=100086453783217
Up and Downs Support Group: https://www.facebook.com/upanddownswm
BBC 'Life and Birth’: https://www.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4
12 Step Fellowship: https://www.na.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/05/06/140-keeping-up-with-bertie/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.

Sunday Apr 23, 2023

139. Looking Back and Seeing the Effects of a Non Inclusive Environment - Indira Cruz

Sunday Apr 23, 2023

In this week's episode we have a wonderful conversation with Indira Cruz discussing the impact a non-inclusive environment had on her brother, now 50. By looking back at our past we learn from the injustices and see the consequences they had on generations of people with disabilities. Some of those lessons can be hard. This is one of them.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/04/23/139-indira-cruz/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.

Monday Apr 10, 2023

138. ’Yes. No. Maybe.’ - Our Entry In The 2023 Easterseals Disability Film Challenge

Monday Apr 10, 2023

This episode marks the beginning of the Easterseals Disability Film Challenge’s Awareness Campaign. It’s our 9th film and it’s taken nine years to realize the Awareness Campaign strives to tell our stories to as many people as possible and by doing that, changing the path and narrative of individuals with disabilities. Our film, 'Yes. No. Maybe.' is a teenage love story. We hope you will watch and it makes you smile.
www.YesNoMaybeFilm.com
EDFC Website: https://disabilityfilmchallenge.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/04/10/138-yes-no-maybe/2/

Sunday Mar 26, 2023

137. Citizens of the Wold Charter Schools: Christina Aries and Maureen Lamorena-Tatsui

Sunday Mar 26, 2023

In this episode we celebrate Citizens of the World Charter Schools whose approach to inclusion was a life changing discovery for our family. We sit down with Dr. Maureen and Mrs. Aries, Co-principals of CWC, and discuss the importance of inclusion, its impact and why we as parents, if it is what is best for our student, should insist on our child’s right to an inclusive classroom.
CWC Website: www.CWCsilverlake.org
CWC Instagram: https://www.instagram.com/citizensoftheworldla/
CWC Los Angeles FB: https://www.facebook.com/citizensoftheworldLA
CWC Kansas City FB: https://www.facebook.com/cwckansascity
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/03/26/137-cwc/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.

Sunday Mar 19, 2023

136. World Down Syndrome Day with Dr. Eric Rubenstein and his Co-Researcher Team

Sunday Mar 19, 2023

Happy World Down Syndrome Day 2023! In celebration of our community, we are sharing a discussion we had this month with Dr. Eric Rubenstein and his co-researcher team. Dr. Eric is an Assistant Professor in the Department of Epidemiology at Boston University and his research team is comprised of six adults with Down syndrome who engage the research process to create their own project. The team is curious about the mental health of people with Down syndrome and designed a research project to explore people’s experiences with mental health issues and how they find support.
Take the survey: https://bostonu.qualtrics.com/jfe/form/SV_bxyp6tWSkJcoU86
The group is also hosting a webinar on Tuesday, March 21 from 12pm-1:30pm EST
Register for the World Down syndrome Day webinar: https://bostonu.zoom.us/webinar/register/WN_BkU7e9D8TO6HPXSRU2gfpg
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/03/19/136-world-down-syndrome-day-with-dr-eric-rubenstein-and-his-co-researcher-team/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.

Sunday Mar 12, 2023

135. Revisiting with Children’s Hospital Los Angeles Pediatrician Dr. Mona Patel Gera

Sunday Mar 12, 2023

Dr. Mona is an attending physician in the Department of General Pediatrics at Children’s Hospital Los Angeles and an Associate Professor in the Department of Pediatrics at the Keck School of Medicine of the University of Southern California. She sat down with us to challenge the many medical myths and stereotypes surrounding children with Down syndrome.
Health Supervision Guidelines: https://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Documents/Health_Care_Information_for_Families_of_Children_with_Down_Syndrome.pdf
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/03/12/135-revisiting-with-childrens-hospital-los-angeles-pediatrician-dr-mona-patel-gera/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.

Sunday Mar 05, 2023

134. Your Dentistry Questions Answered - Dr. Jill Lasky

Sunday Mar 05, 2023

Dr. Jill Lasky discusses the importance of Pediatric Dentistry, how to introduce dental care and specifics pertaining to the Down Syndrome community. We also discuss methods and tools for parents who want to support their children in making good dental health habits.
Lasky Pediatric Dental Group: https://www.laskypediatricdental.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/03/05/134-your-dentistry-questions-answered-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.

Sunday Feb 19, 2023

133. Liam Turns 13: Let The Teenage Years Begin

Sunday Feb 19, 2023

This week Liam turns 13. We recorded this episode on Valentine's Day with is fitting because love is the driving force of this family. Becoming a teenager is a milestone we have been looking forward to and we are thankful for all the ups and downs that have gotten us here.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/18/133-liam-turns-13-let-the-teenage-years-begin/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.

Sunday Feb 12, 2023

132. Black History Month: Revisiting Our Interview with Willie Dawkins

Sunday Feb 12, 2023

For Black History Month we revisit a phenomenal episode we had with Willie Dawkins. We honor his story and his parents who gave him the foundation of love and support he needed to find his way through an unjust world and the advocates who came before us who fought for equality and laid the groundwork for our fight for inclusion.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/10/132-black-history-month-revisiting-our-interview-with-willie-dawkins/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.

Sunday Feb 05, 2023

131. The Things We Learn: The Evolution of An Advocate

Sunday Feb 05, 2023

We talk today about how we learn to do things differently, the way we learn from our past, and how the seemingly smallest memories can hold so much in them, like the little lessons along the way. We also explore the need to accept when it’s easy, and how that can be a challenge in itself.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/03/131-the-things-we-learn/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