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 Mar 04, 2021

46. Coming Down The Mountain: Our Interview with Julie Anne Robinson

Thursday Mar 04, 2021

Our conversation with Executive Producer and Director of ‘Bridgerton’, Julie Anne Robinson about the film ‘Coming Down The Mountain’ and the importance of inclusion in media.
‘Coming Down The Mountain’ on Prime Video: https://www.amazon.com/gp/video/detail/B082P67X6D/ref=atv_dp_share_cu_r
Frostig School: https://frostigschool.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/03/46-coming-down-the-mountain-our-interview-with-julie-anne-robinson/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 Feb 25, 2021

45. Speech Therapy with Kerri Wake of McRory Pediatrics

Thursday Feb 25, 2021

Speech Pathologist, Kerri Wake, joins us to talk about communication, supportive tools parents can provide their children and the pathways to receiving speech therapy in the school setting.
The McRory Pediatrics Website: https://www.mcrorypediatrics.com
The Hanen Centre: http://www.hanen.org/Home.aspx
Early Milestone List: https://speechhearing.columbian.gwu.edu/sites/g/files/zaxdzs1996/f/downloads/Milestonesguide.pdf
Article on the benefits of AAC (speech generating devices): https://digitalcommons.unl.edu/cgi/viewcontent.cgi?article=1088&context=specedfacpub
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/25/45-speech-therapy-with-kerri-wake-of-mcrory-pediatrics/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 Feb 18, 2021

44. Looking Back At A Decade: Liam Turns 10

Thursday Feb 18, 2021

Stephen and Lori discuss the process of acceptance, the importance of communication and how to take time for yourself. Originally set for release a year ago, this episode celebrates Liam's 10th birthday and all the accomplishments and lessons learned over a wonderful decade.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/18/44-looking-back-at-a-decade-liam-turns-10/2/
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 Feb 11, 2021

43. Occupational Therapy with Erin Stanford of McRory Pediatrics - Part 2

Thursday Feb 11, 2021

Occupational Therapist, Erin Stanford from McRory Pediatrics, visits us again for Part 2 of our OT discussion. This week we concentrate on behavior and what information parents should have to provide the best supports for their child.
The McRory Pediatrics Website: https://www.mcrorypediatrics.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/08/43-occupational-therapy-erin-stanford-of-mcrory-pediatrics-part-2/2/
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 Feb 04, 2021

42. Occupational Therapy with Erin Stanford of McRory Pediatrics - Part 1

Thursday Feb 04, 2021

Occupational Therapist at McRory Pediatrics, Erin Stanford, visits us to discuss at home and at school OT and helps us more clearly define the overlap of this therapy with Physical Therapy, Speech and Behavior Therapies.
The McRory Pediatrics Website: https://www.mcrorypediatrics.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/04/42-occupational-therapy-erin-stanford-of-mcrory-pediatrics-part-1/2/
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 Jan 28, 2021

41. Behavior: A Conversation with Kyle Davis of McRory Pediatrics

Thursday Jan 28, 2021

Clinical Supervisor of Behavioral Services at McRoryPediatrics, Kyle Davis, visits us to discuss behavioral issues at home and at school. He also answers questions about when, how and why behaviors need to be addressed.
The McRory Pediatrics Website: https://www.mcrorypediatrics.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/28/41-behavior-a-conversation-with-kyle-davis-of-mcrory-pediatrics/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 Jan 21, 2021

40. Discussing Supports with Nikki McRory of McRory Pediatrics

Thursday Jan 21, 2021

Nikki McRory is the founder of McRory Pediatrics and in this episode Nikki gives us an insightful look at the different therapies that can help support your child in reaching their potential.
The McRory Pediatrics Website: https://www.mcrorypediatrics.com
The Hanen Centre: http://www.hanen.org/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/21/40-discussing-supports-with-nikki-mcrory-of-mcrory-pediatrics/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.

Friday Jan 15, 2021

39. Our Community Conversation with Steven Gustafson of 10,000 Maniacs

Friday Jan 15, 2021

Steven Gustafson is a founding member and bassist of the band 10,000 Maniacs. His sister, Cathy, had Down syndrome and we got a chance to discuss with him the impact she had on his life and the lives around her.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/15/39-our-interview-with-steven-gustafson-from-10000-maniacs/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.

Wednesday Jan 06, 2021

38. Moving Into A New Year One Moment At A Time

Wednesday Jan 06, 2021

In this episode Stephen and Lori discuss facing some of the difficulties of 2020 and how to move onto a fresh new year in a positive way.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/06/38-moving-into-a-new-year-one-moment-at-a-time/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.

Saturday Dec 05, 2020

37. Our Community’s Response To Emmerdale’s Negative Storyline About Down Syndrome - Cristina Bowman

Saturday Dec 05, 2020

In this episode we talk with Cristina Bowman of Diff-Ability about the British soap opera Emmerdale and it’s recent storyline which depicts a couple having an abortion because their baby has Down syndrome.
Petition against Emmerdale: https://www.change.org/p/itv-bin-emmerdale-s-prejudiced-storyline-about-down-s-syndrome?recruited_by_id=2f3349b0-f96d-11e5-80fd-c1f380c9ade0
DIff-Ability: https://www.diffability.co.uk
10% Videos: https://www.youtube.com/playlist?list=PLzOTYSYK2uvr96j-WowLKrxwDG-u9EsRx
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/12/05/37-our-communitys-response-to-emmerdales-negative-storyline-about-down-syndrome-with-cristina-bowman/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.

Wednesday Nov 25, 2020

36. Giving Everyone Access to a Down Syndrome Specialty Clinic with DSC2U - Dr. Brian Skotko

Wednesday Nov 25, 2020

We are thankful to have Dr. Brian Skotko on today’s episode. Dr. Brian is the director of the Down Syndrome Program at Massachusetts General Hospital, a Board-certified medical geneticist and has dedicated his professional energies toward children with cognitive and developmental disabilities. Today we talk about his new online clinic, DSC2U, the importance of inclusion and how we as a community can help the medical profession improve their delivery of a Down syndrome diagnosis.
DSC2U: https://dsc2u.org
LUMIND IDSC FOUNDATION: www.lumindidsc.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/25/36-giving-everyone-access-to-a-down-syndrome-specialty-clinic-with-dsc2u-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 Nov 19, 2020

35. Building a Realistic Approach to a Healthy Dental Routine - Dr. Jill Lasky

Thursday Nov 19, 2020

In our second interview with Dr. Jill we discuss the 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/2020/11/19/35-creating-a-realistic-approach-to-a-healthy-dental-routine-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.

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