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 Feb 18, 2024

166. Finding The Right Supports Without Shame - Julie Picot

Sunday Feb 18, 2024

This week we have the wonderful Julie Picot back on the show to discuss her experience transitioning her daughter, Elyse from TK to Kindergarten. We also touch upon how very often parents feel shame when guiding their school aged children out of diapers.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/02/17/166-finding-the-right-supports-without-shame-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.

Sunday Jan 28, 2024

165. Picking The Right Pediatrician with Dr. Ilona Kleiner

Sunday Jan 28, 2024

Dr. Ilona Kleiner has been both our children's pediatrician since birth. Today we discuss with her the importance of always seeing the whole child and how her care for Liam really isn't any different than that of a typical child.
Dr. Kleiner's Bio: https://www.pamgdocs.com/copy-of-about-our-doctors-1
Recommend books:
What’s Going on Down There? by Karen Gravelle
What’s Happening to My Body by Lyna Madras
Guy Stuff by Cara Natterson
It’s Perfectly Normal by Robin Harris
Being You: The Body Image Book by Charlotte Markey
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/01/28/165-picking-the-right-pediatrician-with-dr-ilona-kleiner/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 Jan 21, 2024

164. Charlotte and Riley: Not Taking No For An Answer

Sunday Jan 21, 2024

In this episode, we discuss Charlotte Fien’s path to advocacy, breaking down the barriers of education, the love story between her and her husband Riley, and how her infectious can-do attitude has influenced him to break down barriers in his own life. It is the story of two humans creating the life they want to live and never taking no for an answer.
Charlotte & Riley Forever FB Page: https://www.facebook.com/autismintune
A World Without Down’s Syndrome (Documentary): https://www.amazon.com/gp/video/detail/B07MSHKFKQ/ref=atv_dp_share_cu_r
Charlotte’s Speeches:
2017 United Nations: https://youtu.be/1Xqku6RwaAY?si=KYf7jnx-Uc56cgRP
2018 United Nations: https://youtu.be/FHglwa8vlYg?si=hwjusGDIsVSh5_ty
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/01/21/164-charlotte-and-riley-not-taking-no-for-an-answer/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 Jan 14, 2024

163. Revisiting Patience In The New Year with Maezen Miller

Sunday Jan 14, 2024

Happy Martin Luther King Day! We start this new year by revisiting with our friend, Zen Buddhist Priest, Maezen Miller. We discuss having patience and letting go in order for it to all unfold. Believing and having patience can enable our children to be who they are, go where they go and do what they do, to become exactly who they are.
Karen Maezen Miller: https://karenmaezenmiller.com
Maezen’s Book on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1
Steve & Michel Gleason Foundation: https://teamgleason.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/01/14/163-revisiting-patience-in-the-new-year-with-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.

Sunday Oct 22, 2023

162. Living In The Moment and Taking the Time to Reflect On Life

Sunday Oct 22, 2023

Follow Stephen while he unexpectedly flies back to Louisiana due to his mother’s illness. He reflects on the importance of experiencing all of life’s moments and truly being present.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/22/162-living-in-the-moment/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 Oct 15, 2023

161. Down Syndrome Awareness Month 2023: Bringing Awareness to Our Community’s Potential

Sunday Oct 15, 2023

October is Down Syndrome Awareness Month and in this episode, Stephen and Lori discuss another angle in your next Awareness Campaign. Some of the most important people to make aware of our community's potential are educational professionals. We as parents can advocate but it just might be our children who change the minds of those in charge of their education.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/14/161-down-syndrome-awareness-month-2023-bringing-awareness-to-our-communitys-potential/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 Oct 08, 2023

160. The Inclusive Hub: A Gym For People of All Abilities with Liam Starkey

Sunday Oct 08, 2023

Joining us today is Liam Starkey from The Inclusive Hub. The Hub was started in 2016 helping small groups of Autistic children around Liverpool, England take part in non-contact boxing and fitness sessions. It has now expanded and continues to empower people of all ages and abilities through exercise.
Website: www.theinclusivehub.co.uk
Order a tee shirt: transalpino.co.uk
Twitter: https://twitter.com/liamstarkey84
Instagram: https://www.instagram.com/the_inclusive_hub/?hl=en
Facebook: https://www.facebook.com/RotundaInclusiveHub
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/08/160-the-inclusive-hub/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 Oct 01, 2023

159. DSALA and DSC2U: Supporting Our Spanish-Speaking Community

Sunday Oct 01, 2023

Today we are joined by Sandra Baker from the Down Syndrome Association of Los Angeles (DSALA) and Dr. Brian Skotko from the Down Syndrome Clinic To You (DSC2U) to discuss their collaboration in supporting Spanish-Speaking families that have a member with Down syndrome.
DSC2U: www.DSC2U.org
DSALA: www.DSALA.org
DSALA Contact:
(818) 786-0001
info@DSALA.org
NOTES FROM DR. SKOTKO:
We have written a summary paper for the lay audience to help them access and understand all of our research findings (available in English and Spanish).
We have created ready-to-go Facebook posts (English and Spanish) and Twitter posts (English and Spanish), summarizing our research findings.
We also developed this Awareness Building event toolkit, so that Down syndrome groups can continue to host meaningful diversity dialogues in their community. We provide ready-to-go materials and easy action steps.
Albert Pless and I gave Grand Rounds at UCSF Benioff Children's Hospital and our own MGH Genetics Division about our research findings. The recording for this presentation is available for viewing.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/01/159-dsala-and-dsc2u/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 Sep 24, 2023

158. Best Buddies with Katelyn Quintero

Sunday Sep 24, 2023

This week we were joined by Katelyn Quintero from Best Buddies International, which is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, and inclusive living for individuals with intellectual and developmental disabilities.
Website: www.bestbuddies.org
Champion of the Year: www.bestbuddieschampion.org
The Walk: www.bestbuddiesfriendshipwalk.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/24/158-best-buddies-with-katelyn-quintero/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 Sep 17, 2023

157. Ruby’s Rainbow with Liz Plachta

Sunday Sep 17, 2023

We had such fun talking to Liz Plachta, the founder of Ruby’s Rainbow! Ruby’s Rainbow grants scholarships to students with Down syndrome who are seeking post-secondary education, including enrichment or vocational classes, and helping them achieve their dreams of higher education while spreading awareness of their capabilities and general awesomeness.
Ruby’s Rainbow: www.rubysrainbow.org
WDSD Pledge: www321pledge.org
Facebook Page: https://www.facebook.com/RubysRainbow/
Instagram: https://www.instagram.com/rubysrainbow/
Twitter: http://www.twitter.com/rubysrainboworg
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/16/157-rubys-rainbow/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 Sep 10, 2023

156. GiGi’s Playhouse with Nancy Gianni

Sunday Sep 10, 2023

Today, we are joined by Nancy Gianni to talk about her foundation, GiGi’s Playhouse, which provides FREE, life-changing therapeutic, educational, and career training programs for 30,000+ individuals of all ages, everyday. GiGi’s Playhouse empowers families by maximizing opportunities for daily achievement and lasting acceptance and in turn, showing the world what individuals with Down syndrome are truly capable of achieving as students, co-workers, volunteers, friends, and valued members of the community.
GiGi’s Playhouse: https://gigisplayhouse.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/09/156-gigis-playhouse-with-nancy-gianni/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 Sep 03, 2023

155. Using Your IEP to Make the Most of Middle School

Sunday Sep 03, 2023

In this episode we give an update on our son Liam, a 13-year old in middle school, and discuss how far he has come, what supports have helped us navigate his transitions into middle school and how we are helping him find the independence every teen wants to cultivate.
Citizen's Of The World Middle School: https://www.cwcsilverlake.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/02/155-using-your-iep-to-make-the-most-of-middle-school/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