If We Knew Then - Down Syndrome Podcast

Stephen and Lori Saux

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

  1. 4d ago

    201. A Conversation About Down Syndrome If You Happened Upon The Unfortunate YouTuber

    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 about life expectancy, medical conditions and quality of life. Lettercase: https://lettercase.org/   Down Syndrome Pregnancy: https://downsyndromepregnancy.org/   Genetic Support Foundation: https://geneticsupportfoundation.org/   Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/06/10/201-stephanie-hall-meredith/2/ Please follow us on X @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. Also 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. -------- Summary: This episode of If We Knew Then centers on a timely and necessary conversation about misinformation surrounding Down syndrome, sparked by a viral post from a YouTuber. Stephen and Lori Saux are joined by Dr. Stephanie Hall Meredith, a public health expert and longtime advocate, to unpack the harm caused by inaccurate narratives and to provide clear, evidence-based context for listeners. Especially those new to a diagnosis. Stephen and Lori emphasize that the misinformation circulating is not new to the disability community. Many of the claims echo outdated and harmful messages that families have encountered for decades from medical professionals, educators and society at large. What is new, however, is the scale at which these ideas can spread, reaching millions and potentially shaping perceptions for people with little prior exposure to Down syndrome. While frustrating, they acknowledge that moments like this can open the door for broader public education and dialogue. Dr. Meredith shares her personal and professional perspective, highlighting how critical the diagnosis experience is for families. She contrasts her own positive introduction, supported by accurate information and peer connection, with the trauma many families report when they are given only negative or incomplete medical data. This “flashbulb memory” of diagnosis often leaves lasting emotional impact, particularly when it frames a child’s life in terms of limitations rather than possibilities. A central theme of the episode is correcting common misconceptions. The discussion addresses misleading claims about life expectancy, miscarriage rates and quality of life. Dr. Meredith explains that many statistics are either outdated or misrepresented, noting that improvements in healthcare, inclusion and access to services have dramatically changed outcomes over the past 50 years. She stresses that the challenges individuals with Down syndrome face are often rooted not in the condition itself, but in societal barriers and lack of opportunity. The conversation also explores the difference between the medical and social models of disability. While the medical model focuses on deficits and conditions to be managed, the social model emphasizes how environments and attitudes shape outcomes. The hosts advocate for a more balanced, human-centered approach. One that includes both medical awareness and a realistic, hopeful picture of daily life. Throughout the episode, there is a strong call for accountability, particularly for content creators who speak about marginalized communities. The spread of misinformation, even if unintentional, can reinforce stigma and discrimination in areas like education, employment and healthcare. Ultimately, the episode reinforces the importance of accurate information, representation and community support. It encourages families to seek out reliable resources, connect with advocacy networks, and trust in the full potential of their children. The message is clear: Down syndrome is not defined by limitations, and with the right supports and perspectives, individuals can lead rich, meaningful lives.

    1h 13m
  2. 200. The Power Of Words

    Jun 3

    200. The Power Of Words

    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 appropriate" is not the same as "calculator", how "best practices" and "mindful of everyone's time" are used to shut you down, what to do when someone says "not my job" and the critical difference between accommodations vs. modifications. If you're a parent, caregiver or advocate, share this episode with someone who needs it right now.  Because education is not a favor. It's your child's RIGHT. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/06/03/200-the-power-of-words/2/ Please follow us on X @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. Also 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. -------- Summary: The episode opens with a Mark Twain quote that has stuck with Lori since college: the difference between the right word and the almost right word is the difference between lightning and a lightning bug. That distinction becomes the through line of the entire conversation, applied directly to the language parents encounter in IEP meetings. Lori and Stephen use the example of Liam's calculator accommodation to illustrate exactly how dangerous vague language can be. When the accommodation was rewritten from simply "calculator" to "calculator when appropriate," it shifted the power from Liam's documented need to an outside party's judgment call. That single phrase "when appropriate" could allow any teacher, aide, or resource person to decide a calculator isn't needed, effectively stripping Liam of a legal accommodation. They also clarify the important distinction between accommodations and modifications, emphasizing that a calculator is a tool that gives Liam access to his curriculum, not a shortcut that changes the lesson itself. The hosts also tackle other common phrases used in IEP meetings that parents should immediately recognize as red flags like "best of our ability," "as needed," "if available," and "best practices." Each of these phrases introduces ambiguity into what should be a precise, legally binding document. Lori is direct: if it isn't written clearly and specifically, it becomes a favor rather than a right, and favors can be taken away. One of the most compelling moments of the episode comes when Stephen and Lori share the reframe that changed everything in their advocacy. If Liam is failing, it isn't Liam who has failed. It is the system that has failed him. When accommodations are properly in place and the IEP is being honored, their son thrives. That shift in language, from "Liam is failing" to "Liam has been failed," changes the entire dynamic of the conversation and places accountability where it truly belongs. They also address the emotional weight of this journey honestly and with compassion, acknowledging that earlier in their advocacy they were defensive, exhausted and reactive. Over time, they have learned that listening, staying focused on the end goal, and removing ego from the room creates more change than fighting ever did. Their approach now centers on collaboration, asking "how are we going to get there?" rather than simply pointing out what isn't working. Lori and Stephen close with a reminder that the IEP document must be strong enough to stand on its own. It has to surpass the adults in the room. If every person in that meeting left tomorrow, the document alone should be clear enough to ensure Liam receives every support he is entitled to. That standard, they argue, is the only one worth accepting. This episode is an essential listen for any parent, caregiver or advocate sitting across the table in an IEP meeting, reminding us all that we have the power to choose our words and that choosing the right ones is everything.

    44 min
  3. May 29

    199. Being Told To Grieve The Child You Didn't Have

    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 initial relationship they build with their child. This conversation is part of a larger discussion about the kinds of advice parents often receive in those early moments. Well-meaning, perhaps, but not always aligned with the lived experiences of families raising children with Down syndrome. We explore what needs to change and what parents actually need to hear instead. Honesty, possibility and support without assumptions. If you’ve ever questioned the narratives surrounding disability or want to better understand how language impacts families, this episode invites you to rethink what we’ve long taken for granted Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/05/28/199-being-told-to-grieve-the-child-you-didnt-have/2/ Please follow us on X @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. Also 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. --------- Summary: In this episode of the If We Knew Then podcast, hosts Stephen and Lori Saux discuss the harmful and outdated advice often given to parents following a Down syndrome diagnosis: the instruction to "grieve the child you didn't have." Key themes from the discussion include: The Inappropriateness of Forced Grief: The hosts argue that telling new parents to grieve is a form of bullying that ignores the immediate reality of their child’s life and potential (0:45 - 2:20, 14:00 - 15:45). They emphasize that this mindset can rob parents of precious time and create unnecessary, negative expectations. The hosts address the popular essay "Welcome to Holland," which compares the experience of parenting a child with a disability to taking an unexpected trip to a different country. While acknowledging the original author's intent to bring visibility to Down syndrome in 1987, the hosts find the metaphor harmful because it perpetuates the idea that their child's life is a "consolation prize" or a disappointment (31:00 - 32:30, 35:20 - 38:00). Lori and Stephen advocate for moving away from narratives of loss. They suggest that instead of grief, parents should be offered support, resources, and an appreciation for the reality of their child's unique life (18:15 - 19:15, 42:45 - 43:30). Throughout the episode, the hosts stress that nobody has the right to define a child's future or dictate a parent’s emotional response (27:00 - 28:30). They celebrate the strength, honesty, and capability they have witnessed in their son, Liam, and encourage other parents to ignore societal stereotypes and focus on building a genuine, loving relationship with their child (28:30 - 30:00, 42:30 - 43:30).

    45 min
  4. Feb 19

    198. It's Liam's 16th Birthday!

    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.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/02/18/198-its-liams-16th-birthday/2/ Please follow us on X @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. Also 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. ------- Summary: In this episode, the core message is the necessity of creating an "airtight" Individualized Education Program (IEP) document. Stephen and Lori Saux use a compelling "lottery" analogy: if everyone currently involved in a student's education were to win the lottery and not show up the next day, the IEP document itself must be clear enough to define exactly what that student's day should look like. Key points include: Sustainability: The document must be able to stand on its own, regardless of which specific staff members are present. Precision: It should be so well-written and detailed that it cannot be misinterpreted by new people entering the student's educational life. Vision: An effective IEP must surpass the individual visions of the "adults in the room" to ensure consistent support through every step of the student's education.

    1h 6m
  5. Feb 3

    197. An Update with Melissa Kynoch - Bertie's In School

    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 how Bertie is doing now that he’s in school. It’s a beautiful reflection on growth, joy and continuing to embrace each milestone with love and optimism. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/02/02/an-update-with-melissa-kynoch-berties-in-school/2/ Please follow us on X @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. Also 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. --------- Summary: In this episode of If We Knew Then, Stephen and Lori reconnect with Melissa Kynoch, a mother from Birmingham, England, whose journey with her son Bertie first reached millions through the BBC series Life and Birth. Now available to U.S. audiences, Melissa’s story continues to resonate as a powerful example of advocacy, perspective, and redefining expectations around a Down syndrome diagnosis. Melissa reflects on her experience receiving Bertie’s prenatal diagnosis, emphasizing her determination to protect the joy of her pregnancy. Knowing Bertie would be her last child, and that he would require early heart surgery, she chose to focus on what mattered most: becoming his mother. Rather than absorbing fear-based narratives, she intentionally rejected negativity and prioritized connection, preparation, and celebration. The conversation highlights how differently a diagnosis can be delivered and how profoundly that delivery shapes a family’s early experience. Stephen and Lori contrast Melissa’s proactive and supported journey with their own, which was marked by discouraging messaging and isolation. This contrast underscores a central theme of the episode: the critical importance of early, positive, and accurate information for parents. As Lori notes, “early intervention” applies not just to children, but to parents as well. Melissa credits much of her mindset and resilience to immediate community support. Before Bertie was born, she connected with local Down syndrome groups, attended meetups, and built relationships that continued through his birth and beyond. She also found strength in resources like the “Wouldn’t Change a Thing” initiative, which provided images and stories focused on what life can be, rather than what might go wrong. This network offered reassurance during Bertie’s early medical challenges, including his successful heart surgery and recovery. Now approaching six years old, Bertie is described as energetic, joyful, and strong—qualities Melissa says were evident even in his earliest days. The discussion touches on the adaptability often seen in children with Down syndrome, particularly in how Bertie has thrived despite his heart condition. His progress serves as a reminder that developmental timelines may differ, but growth continues in meaningful and often surprising ways. The episode also explores communication development. Melissa shares Bertie’s journey with Makaton signing and emerging speech, emphasizing her belief that understanding and expression were always present, even before words came. Stephen and Lori relate this to their son Liam’s experience, reinforcing the idea that communication takes many forms and should be recognized and supported accordingly. Throughout the conversation, humor and authenticity ground the discussion in real family life—interruptions, laughter, and all. These moments reflect the very reality that many parents are told may never exist. Instead of loss, the episode presents a narrative filled with connection, growth, and joy. Ultimately, this episode reinforces a powerful message: when families are given support, community, and truthful representation, they are better equipped to navigate their journey with confidence. Melissa’s story serves not only as encouragement for new parents but also as a call to shift the narrative—away from limitation and toward possibility.

    1h 9m
  6. 11/26/2025

    196. Buddy Up For Life with Beth Gibson

    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 December 2008 in Columbus, Ohio. Since then, the organization has expanded to 15 programs across three pillars (health & wellness, education, and friendship), with tennis as a cornerstone that has seen exponential growth nationwide. Buddy Up Tennis is now a weekly, high-energy adaptive tennis program for athletes ages 5 and up where volunteer buddies are partnered with athletes to provide support, develop friendships, and have fun while playing tennis. The program is now nationally recognized as the leader in impacting the lives of individuals with Down syndrome and Buddy Up for Life currently has 850 athletes, 1,400 buddies, 130 coaches and instructors and 42 chapters nationwide, a number that continues to grow. Beth continues to lead Buddy Up for Life, with her son, Will, now a college student. She has made it her life’s mission to embrace what it means to live with Down syndrome and help participants live a life that redefines expectations and breaks traditional boundaries. Learn more at their Website and Instagram. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/11/25/196-buddy-up-for-life-with-beth-gibson/2/ Please follow us on X @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. Also 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.

    1h 1m
  7. 11/11/2025

    195. Yellow Flower Gills Me Whole - Poetry By Sid Ghosh

    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.  Sid’s poetry book is available through Amazon or at this Milkweed link: https://milkweed.org/book/yellow-flower-gills-me-whole Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/11/10/195-yellow-flower-gills-me-whole-poetry-by-sid-ghosh/2/ Please follow us on X @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. Also 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. -------- Summary: Episode 195 of the IF WE KNEW THEN podcast features a powerful and deeply reflective conversation with poet Sid Ghosh and his mother, Dr. Vaish Sarathy. Centered around Sid’s newly released poetry collection 'Yellow Flower Gills Me Whole', our discussion explores communication, identity, disability and the transformative power of expression.   Sid, an 18-year-old with Down syndrome and autism, communicates using a letterboard, spelling out his thoughts with intention and precision. We make a point to highlight how essential it is to witness this process visually, as it reveals not only how Sid communicates but also the depth and complexity of his thinking. What emerges quickly is that Sid does not experience language in conventional ways. He explains that he “thinks in poetry” because typical speech is difficult for him. This insight reframes assumptions about communication and intelligence, illustrating that expressive language can exist richly even when it looks different.   We dive into Sid’s creative process, which is rooted in consistent practice rather than structured composition. His poems, written over several years, are part of a daily or weekly ritual. Titles come last, reinforcing that his work begins as pure thought and evolves organically. His poetry is abstract yet deeply intentional, filled with metaphors that challenge readers to reconsider meaning, identity, and perception.   One of the most impactful part of the podcast episode centers on a poem titled “Interstices,” where Sid describes “gaps” left by neurotypical individuals. These gaps, he explains, are spaces where his life exists between societal expectations and misconceptions. Through guided interpretation, the conversation reveals a profound critique of how disability is framed, particularly by parents and society. Sid identifies two “knots”: sadness and the need for perfection. He suggests that the life of a person with a disability exists between these pressures. Between grief-driven narratives and unrealistic ideals.   This perspective leads to a powerful insight: that embracing disability with pride, rather than sadness or a fixation on perfection, is liberating. Sid defines “madness” (a word he reclaims) as “letting go,” associating it with freedom and self-acceptance. His poetry challenges dominant narratives that portray disability as tragedy, instead offering a vision of identity that is whole, complex and worthy of celebration.   Together, we also touch on real-world implications of these narratives. Sid shares discomfort with spaces where parental grief dominates, such as conferences, explaining how these discussions can feel limiting or harmful. We connect this to our own experiences as parents, reflecting on how societal narratives often overshadow the joy, growth and individuality of our son, Liam. We made sure to emphasize that many challenges associated with disability stem not from the condition itself, but from systemic barriers and ingrained biases.   Throughout the episode, Sid’s voice, both literal and poetic, serves as a reminder of the importance of listening to individuals with disabilities as authorities on their own experiences. His work resists tokenism and insists on full humanity, pushing back against reductive views.   Ultimately, this episode is not just about poetry. It is about redefining communication and embracing a more expansive understanding of identity. Sid’s words invite us to move beyond limiting narratives and to recognize the freedom that comes with authenticity and pride.

    1h 2m
  8. 11/03/2025

    194. That’s Not How It Happened: A Novel By Craig Thomas

    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 by Craig’s son, Elliott, who lives with a rare condition called Jacobsen Syndrome and is on sale starting November 4, 2025. We were introduced to Craig through our dear friends Jenna Fischer and Angela Kinsey, the hosts of the Office Ladies podcast. Jenna and Angela have been such loyal supporters of If We Knew Then and we’re so grateful to them for connecting us with Craig. That introduction led to a heartfelt and honest conversation that we are excited to share with you. You can order Craig Thomas's new book from major booksellers like Barnes & Noble, Amazon.com, HarperCollins Publishers, and other retailers. Also, check out Craig’s How I Met Your Mother rewatch podcast called How We Made Your Mother, which he co-hosts with Josh Radnor. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/11/02/194-thats-not-how-it-happened-a-novel-by-craig-thomas/2/ Please follow us on X @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. Also 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. ----- Summary: In this episode we welcome Craig Thomas, co-creator of 'How I Met Your Mother', for a deeply personal and insightful conversation that blends storytelling, humor and advocacy. Introduced through mutual friends Jenna Fischer and Angela Kinsey, from THE OFFICE, Craig joins the podcast to discuss his new novel, 'That’s Not How It Happened', and the real-life experiences that inspired it. Craig shares the story of his son Elliott, who was born with Jacobson syndrome, a rare genetic condition with similarities to Down syndrome. What began as an unexpected and frightening medical journey marked by a low birth weight, delayed diagnosis and emergency open-heart surgery, evolved into a life-changing experience that reshaped Craig’s identity, priorities, and creative voice. He reflects on the emotional whiplash of celebrating his son’s survival, only to be ushered into a stark “bad news room” where a geneticist delivered a bleak, impersonal prognosis based on a list of worst-case outcomes. Stephen and Lori connect deeply with this experience, recalling similar moments following their son Liam’s diagnosis. Together, they examine how the medical model often frames disability through limitation and fear, rather than possibility and individuality. Craig highlights how this early messaging can distort a parent’s understanding of their child before they’ve even had the chance to know them. Over time, however, that narrative is replaced by lived experience by discovering who their child truly is beyond the diagnosis. For Craig, that discovery revealed Elliott as vibrant, musical and full of life “wanting to be at the party” from the very beginning. Now 18, Elliott’s passion for music and joyful presence have become central to Craig’s understanding of both fatherhood and storytelling. This long journey ultimately inspired his novel, which he describes as a rare attempt to bring humor into the world of special needs parenting, a space often dominated by either sentimentality or hardship. By writing a comedic, fictional narrative grounded in truth, Craig aims to humanize disability and broaden the way these stories are told. They also explore the challenges of representation in media. Craig shares his frustration with trying to develop film and television projects centered on disability, often deemed too “niche” by studios despite the vast size and diversity of the disability community. His decision to write a novel instead reflects both creative freedom and a determination to tell this story authentically. Throughout the episode, humor emerges as a vital tool, not to diminish the challenges, but to process them and reclaim joy. Lori and Stephen echo this sentiment, emphasizing how laughter has been essential in their own journey. Together, they challenge the isolation often placed on families by systems and narratives that fail to reflect the richness of their lives. Ultimately, this episode is about reframing perspective. It underscores the importance of community, accurate information and storytelling that reflects real lives, not worst-case scenarios. Through Craig’s story, listeners are reminded that while the path may begin with uncertainty, it often leads to connection and a deeper understanding of what it means to truly see and celebrate a child.

    1 hr
5
out of 5
111 Ratings

About

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

You Might Also Like