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.
Episodes
In this powerful episode we sit down with longtime disability advocate Stephanie Hall Meredith for an honest conversation about the changes happening around special education, disability rights and the systems that protect inclusion and equal education. Stephanie brings decades of advocacy knowledge to a conversation that can feel overwhelming, but ultimately leaves us with something we need right now: a reason to stay informed, st...
Back to school can bring excitement, but for but for caregivers of students with Down syndrome, it often brings anxiety.
Before the first day, many parents are already thinking about IEP meetings, accommodations that weren’t followed and how to ensure their child is supported and included. Back-to-school season isn’t just about new routines, it’s about advocacy, communication and making sure access to education is...
In this episode, we sit down with Dr. Mona Patel Gera from Children’s Hospital Los Angeles and talk through the “laundry list” that comes with a Down syndrome diagnosis. We keep it practical, focusing on what families actually need to ask and what requires attention early on, drawing from the same appointments and evaluations we’ve navigated with Liam.
Dr. Gera also shares her connection to Liam through her ...
In this episode we speak with Micah Kessel, founder of Playground of Empathy and creator of Empathable, a project designed to help people experience perspectives different from their own. The conversation focuses on what inclusion actually means beyond the word itself, and why many current approaches fail to create real belonging.
Micah explains how most inclusion efforts rely on rules or negative messaging, rather than lived exper...
This week we are joined by our daughter Sophia and guests Dr. Brian Skotko and Sue Levine to talk about the sibling experience in families of individuals with Down syndrome. The conversation centers on the book "Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters," which was developed from real questions collected during sibling workshops.
Sophia shares her perspective as a sibling, including questions ab...
This week we talk with attorney and parent advocate May Mallari about what happens when expectations are set too early in a child’s education. We were drawn to her because her son, Devin, was placed on an alternate curriculum in elementary school but still earned a high school diploma. A path once thought to be unattainable. In this episode we discuss what to ask for and what to question because the information families are g...
In this episode we revisit with Dr. Brian Skotko to talk about the impact of Alzheimer’s in the Down syndrome community and discuss some proactive steps that may help to improve the long-term wellness of people with Down syndrome.
Down Syndrome Brain Train: https://www.downsyndromebraintrain.com
Down Syndrome Clinic: https://www.dsc2u.org
Tar Heel Reader Book Collection: https://tarheelreader.org
In this episode we have a very important conversation with Dr. Stephanie Hall Meredith, a nationally recognized public health researcher, author, Down Syndrome advocate and Mother to Andy. Together we address the widespread misinformation about Down syndrome, which was spread this week by a YouTuber. This conversation aims to provide accurate, research-backed information for families receiving diagnoses and counter false narratives...
It's our 200th episode and we decided to talk about the most powerful gift you have as an advocate... your words. We not only discuss the words you speak, but also the words administration tries to include in an IEP. From the sneaky red flag of "when appropriate" to the loaded phrase "best of our ability," we reveal the language that puts your student at a disadvantage and what to do about it.
We address why "calculator when approp...
What happens when one of the first things you’re told after a Down syndrome diagnosis is to grieve the child you didn’t have?
In this episode, we take a hard look at that phrase, where it comes from, why it’s been so widely repeated and why we feel it’s outdated and harmful. We unpack how these words can shape a parent’s mindset, feelings and the initia...
This episode is a celebration of Liam and also a reflection of what the last 16 years have been. We discuss unfair societal constructs along with systemic flaws in education that people with Down syndrome face and how our collective advocacy will make a difference.
Episodes on YouTube: https://www.youtube.com/playlist?list=PLi4R9dL4avnOh5T8VEejTmDL15gKp2i_u
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/...
We reconnect with Melissa Kynoch, whom many will remember from the BBC documentary Life and Birth. Millions of viewers around the world were inspired by Melissa’s positivity and grace when her son Bertie was born with Down syndrome. Now, fix years later, Life and Birth is available in the United States on Amazon Prime, giving a whole new audience the opportunity to experience their story.
Melissa shares an update on life and ...
Beth Gibson, Founder & Executive Director of Buddy Up for Life/Buddy Up Tennis, founded Buddy Up for Life in 2008 when her then 3 ½-year-old son, Will, who has Down syndrome, wanted to play tennis with his older brother. Beth realized there was a void in fitness programs for people with Down syndrome. And took the initiative to make her son’s dreams a reality, holding the first Buddy Up Tennis Clinic in Dece...
Here is another beautiful conversation we had with Dr. Vaish Sarathy and her son, poet Sid Ghosh who has published a book of poetry titled Yellow Flower Fills Me Whole. Sid has a duel diagnosis of Autism and Down syndrome and previously appeared on the podcast, with Vaish, to discuss non-linear education and how he communicates using a letter board.
In this episode, we sit down with How I Met Your Mother co-creator Craig Thomas to talk about his new novel, That’s Not How It Happened. The novel is about a family whose lives are thrown into turmoil when a Hollywood producer turns their story into a movie, forcing them to confront their differing perspectives on their past and the challenges of raising their son, Emmett, who has Down syndrome. It was inspired ...
When schools treat accommodations like a gift instead of a legal right, students with disabilities are the ones who pay the price. In this episode, we share our firsthand experiences navigating our son's high school IEP. From unimplemented accommodations to misplaced assessments and the constant reminder that equity isn’t optional.
We unpack what it really means to “access the curriculum,” how IDEA protects that a...
In this episode we revisit a conversation with our longtime pediatrician, Dr. Ilona Kleiner, who has been with our family since the day Sophia was born and has guided us through Liam’s journey with wisdom, honesty and compassion. Dr. Kleiner shares her perspective on treating children as whole individuals far beyond a diagnoses or statistics and the profound impact that kind of care can have on both medical outc...
Today we sit down with speech-language pathologist and author Janine Tang to talk about her new book "Play Dumb and Sabotage: Mindfully Under-Anticipating the Child’s Needs and Creating Opportunities to Practice Language". Drawing from more than two decades as a therapist and her personal journey as a parent of a child with a brain injury, Jeaneen shares practical strategies parents can use every day to su...
In this episode, we discuss the challenges of a new school year and how we advocate to create a foundation of support for Liam, with the intentions of creating a narrative of inclusion.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/08/30/190-advocating-through-the-challenges-of-a-new-school-year/2/
Please follow us on X @ifweknewthenPOD, you can drop us a line on our ...
In this episode Stephen and Lori sit down on a quiet summer morning to reflect on the season of transitions, both for their family and for their son Liam, who just graduated middle school. From the stillness of summer mornings to the in-between spaces of growth, they talk about what it means to be present during times of change, the challenges and beauty of navigating education with a child who learns differently and ...
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