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 Dec 09, 2021

82. John’s Crazy Socks - Spreading Happiness with John & Mark Cronin

Thursday Dec 09, 2021

In this episode we discuss advocacy in action with entrepreneur and advocate John Cronin and his father Mark. Together they have built the company Johns Crazy Socks, with a business model that Fortune 500 companies aspire to achieve. Through highlighting the strengths of others, cultivating dignity and spreading happiness they are making differences in our community and the world.
Website: https://johnscrazysocks.com/
Dance Party link: Online Dance Party with John (johnscrazysocks.com)
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/09/82-johns-crazy-socks-spreading-happiness-with-john-mark-cronin/2/
TEDx Talk on How People with Differing Abilities are Waiting to Help Us: John and Mark X. Cronin Give TEDx Talk on the Power of People with Dif (johnscrazysocks.com)
John Donates $100,000 to the Special Olympics: John's Crazy Socks Donates $100,000 to the Special Olympics (johnscrazysocks.com)
Researcher Publishes Dissertation on Employing People with Differing Abilities at John’s Crazy Socks: St. John’s University Researcher Publishes Dissertation on John’s Craz (johnscrazysocks.com)
John Joins Webinar on Keratoconus: John Cronin Speaks in Webinar on Keratoconus and Down Syndrome (johnscrazysocks.com)
Without the Special Olympics, There is No John’s Crazy Socks: Without the Special Olympics, there is No John's Crazy Socks (johnscrazysocks.com)
Facebook: https://www.facebook.com/johnscrazysocks
Twitter: https://twitter.com/JohnsCrazySocks
LinkedIn: MXC https://www.linkedin.com/in/mxcronin/
LinkedIn: JCS: https://www.linkedin.com/company/11171456/admin/
Instagram: https://www.instagram.com/johnscrazysocks/
YouTube: https://www.youtube.com/c/Johnscrazysocks/
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 Dec 02, 2021

81. USA Skateboarding’s “Skateboarding For All” Initiative with Miki Vuckovich

Thursday Dec 02, 2021

If all the world were a skate park, celebrating our abilities and individual expression would be a given. In this episode we talk to Miki Vuckovich from USA Skateboarding about their “Skateboarding For All” initiative. The beauty found in the inclusive skating community is one we strive to cultivate in the classroom and the world. You can join them on December 11th for a Virtual Wrap Party which includes members of the U.S. Olympic team and several skateboarding legends.
USA Skateboarding Web site: www.usaskateboarding.com
USA Skateboarding 2021 Wrap Party (tickets and info): https://usaskateboarding.com/blogs/news/meet-the-team-usa-skateboardings-2021-wrap-party
Miki Vuckovich, USA Skateboarding Director Of Development: miki.vuckovich@usaskateboarding.com
Skateboarding For All initiative announcement: https://usaskateboarding.com/blogs/news/usa-skateboardings-inaugural-skateboarding-for-all-event-los-angeles-november-2021
Inaugural Skateboarding For All clinic, Los Angeles (11/6/21): https://youtu.be/hl4aWq7mWRo
USA Skateboarding, Journey To Tokyo documentary (45 min): https://youtu.be/Y5zbqoKlblg
What Is Adaptive Skateboarding? video (3 min): https://youtu.be/rUgWNT14iSg
Adaptive Skateboarding In The Paralympics video (7 min): https://youtu.be/bM3jKgI2lxg
Oscar Loreto, Jr. (USA Skateboarding Board Member and adaptive pro skater): https://www.instagram.com/oscarloretojr/?hl=en
Katherine Beattie (WCMX athlete): https://www.instagram.com/ktbeattie/?hl=en
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/02/81-usa-skateboardings-skateboarding-for-all-initiative-with-miki-vuckovich/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 Nov 25, 2021

80. Bertie’s Heart Surgery: Talking About The Scary Stuff with Melissa Kynoch

Thursday Nov 25, 2021

This week we are grateful to have Melissa Kynoch back with us to tell the story of her son, Bertie’s, heart surgery. It is a very scary experience that about half of all family’s in the Down syndrome community experience. We thank Melissa for opening up to us about the emotions she felt and for sharing all the things she wished she knew then.
12 Step Fellowship: https://www.na.org
Wouldn’t Change A Thing - https://www.wouldntchangeathing.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/25/80-berties-heart-surgery-talking-about-the-scary-stuff-with-melissa-kynoch/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 Nov 18, 2021

79. Reaching Our Advocation Milestones As Parents - with Julie Picot

Thursday Nov 18, 2021

In this episode we revisit Julie Picot and talk about what the past year has held for her family and their journey. We discuss the milestones reached on her advocacy path with her daughter Elyse and what she wish she would have known earlier.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/18/reaching-our-advocation-milestones-as-parents-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 Nov 11, 2021

78. A Son’s Advocacy: Another Conversation with Sader Issa

Thursday Nov 11, 2021

In this conversation we sit down with Sader Issa to get an update from the past year after graduating from Dentistry school and what his future holds. Being a man raised by a father with Down syndrome, we also discuss the rewards of advocacy and the awareness and change it creates vs. the negativity that can exist when his story is exposed to the many opinions of social media.
Preemptive Love: https://preemptivelove.org
L’Archie International: http://www.larche.org
Our First Episode with Sader: https://ifweknewthen.podbean.com/e/23-raised-by-a-father-with-down-syndrome-our-interview-with-sadar-issa/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/11/78-a-sons-advocacy-another-conversation-with-sader-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 Nov 04, 2021

77. Practicing Gratitude Without Expectations: An Interview with Karen Maezen Miller

Thursday Nov 04, 2021

November is known as the month of gratitude and there is no one better to talk to about gratitude then our good friend Karen Maezen Miller. Maezen is a Zen Buddhist Priest who consistently gifts us wonderful words of wisdom. Today we discuss the practice of gratitude and how releasing expectations brings us closer to true thankfulness.
Maezen’s website: https://karenmaezenmiller.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/04/77-practicing-gratitude-without-expectation-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 Oct 28, 2021

76. Catching Up with Melissa Kynoch: A Year and a Half Later

Thursday Oct 28, 2021

October is Down Syndrome Awareness Month and to end the month we revisited with Melissa Kynoch. Melissa is a past guest who may be best known for her appearance on the BBC Documentary Series ‘Life and Birth’. We discussed her experiences of the past 18 months and what changes she would like to see in society regarding the perceptions of people with Down syndrome.
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
Wouldn’t Change A Thing - https://www.wouldntchangeathing.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/10/28/76-catching-up-with-melissa-kynoch-a-year-and-a-half-later/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 Oct 14, 2021

75. A Loving Kindness Meditation Gift from Paul Denniston

Thursday Oct 14, 2021

October is Down Syndrome Awareness Month. We’ve talked about self-care on this podcast and the importance for parents and caregivers to find the time to take care of themselves. We are so grateful that Paul Denniston has once again gifted us, and our listeners, with a guided meditation. This time Paul will guide us through a wonderful Loving Kindness Meditation to help us with the many struggles we can face when we so often put others before ourselves.
Paul’s Website: https://griefyoga.com
Episode 22 - Paul’s 30 Minute Yoga Nidra Meditation: https://ifweknewthen.podbean.com/e/22-a-meditation-gift-from-paul-denniston/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/10/14/75-a-loving-kindness-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 Oct 07, 2021

74. Creating An Inclusive Superhero Universe: A Conversation with Jack and Caitie Clonan

Thursday Oct 07, 2021

Cousins, Jack and Caitie, join us to reveal their concept of a Superhero Cinematic Universe where everyone has the courage to unapologetically be themselves. We discuss how their characters will celebrate the hero within and also the importance of inclusion for mental health. Caitie’s brother, Luke, stars as ‘Ultra Luke’ and we talk about their relationship and how she hopes to change the future by changing the perception of people with Down syndrome.
Jack and Caitie’s Website: https://linktr.ee/infiniteultras
Suicide Prevention Lifeline: https://suicidepreventionlifeline.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/10/07/74-creating-an-inclusive-super-hero-universe-with-jack-and-caitie-clonan/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 30, 2021

73. Down Syndrome Awareness Month: Acknowledging Those Who Came Before Us

Thursday Sep 30, 2021

October is Down Syndrome Awareness Month and in this episode we discuss the true meaning of awareness and advocacy. Many self advocates have blazed a trail for the new generation in our community and we name a few of them so that we know who to look up to when we need encouragement.
Frank Stevens’ speech to Congress (YouTube): https://youtu.be/vtS91Jd5mac
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/30/73-down-syndrome-awareness-month-acknowledging-those-who-came-before-us/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 23, 2021

72. Gifts of the Journey: A Sibling Conversation with Amy Hyde

Thursday Sep 23, 2021

In this final episode of our three-part sibling series, we sit down with Sophia and Jake Pratt’s sister, Amy Hyde, to discuss some of the gifts of having a sibling with Down syndrome. We also explore topics including advocacy, emotions and the R-word.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/22/72-gifts-of-the-journey-a-sibling-conversation-with-amy-hyde/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 16, 2021

71. Fasten Your Seatbelts: A Crash Course on Down Syndrome for Brothers and Sisters

Thursday Sep 16, 2021

In this second installment of our three-part siblings series, we visit with Dr. Brian Skotko and Sue Levine to talk about the book they wrote entitled, ‘Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters’. This is the first book written exclusively for teens with a brother or sister with Down syndrome and tackles a broad range of their most common issues and concerns.
Book: https://www.amazon.com/Fasten-Your-Seatbelt-Syndrome-Brothers/dp/1890627860
Workshop for siblings: https://siblingslearnaboutdownsyndrome.com
YouTube: https://www.youtube.com/user/downsyndromesibbook
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/16/fasten-your-seatbelts-a-crash-course-on-down-syndrome-for-brothers-and-sisters/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