If We Knew Then - Down Syndrome Podcast

We are Stephen and Lori Saux and welcome to the If We Knew Then Podcast. We are parents of two children and one of them has Down Syndrome, Liam. When Liam was born we didn’t know very much about Down Syndrome and most of the information we did have didn’t seem very hopeful and positive. Well this podcast aims to share honest and useful conversations about supports, therapies, education and society as it pertains to Down Syndrome advocacy and parenting.

If We Knew Then - Down Syndrome Podcast is a kids podcast hosted by Stephen and Lori Saux, with 208 episodes on record and a Required Pod Score of 80. PitchCentric scores this show on Booking Probability, Listen Score, and live audience signals refreshed every 24 hours.

Stephen and Lori Saux hosts If We Knew Then - Down Syndrome Podcast, a kids show with 208 episodes published.

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  Episode #208

  208. Changes To Special Education And How We Continue To Advocate with Stephanie Hall Meredith

  Aug 21, 20261h 1m

  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, stay engaged and keep going. Episode Transcript: https://ifweknewthen701833686.wpcomstaging.com/2026/08/20/208-changes-to-special-education-and-how-we-continue-to-advocate/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. 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. ——— SUMMARY: The conversation begins with the changes and uncertainty surrounding the Office of Special Education Programs and proposals to move special education oversight from the Department of Education to Health and Human Services. Stephanie explains why advocates are concerned about losing specialized expertise, reducing federal oversight, and shifting more responsibility onto individual states and families. The discussion also looks at the potential consequences of block grants and what could happen when families lose a clear federal pathway for addressing problems with special education services. Stephen and Lori bring the conversation directly into their own lives when they talk about Liam's return to school. After seeing what they felt was a lackadaisical attitude toward his IEP, Lori made it clear that this year would be different. Collaboration with a school team remains important, but so does making sure that rights are understood, supports are provided, and problems aren't simply allowed to slide. Stephanie explains why understanding disability history is so important, particularly at a moment when advocates are worried about losing progress. The episode explores IDEA, Section 504, the Olmstead decision, the history of institutionalization, and the long fight for inclusion and community-based living. Stephanie shares the story of her family member, who was institutionalized as a child in 1960 and remained there until 2003, illustrating just how recently these systems were part of everyday life for many people with disabilities. The conversation also becomes a practical discussion about advocacy. Stephanie encourages families to follow trusted organizations such as the National Down Syndrome Congress, the National Down Syndrome Society, and The Arc, respond to advocacy alerts, build relationships with state and federal legislators, pay attention to state-level changes, and learn about disability rights through advocacy training and trusted resources. But advocacy isn't only about contacting lawmakers. The episode explores the power of telling our own stories. Stephanie explains how parents can connect personal experience, facts, and emotion to help others understand why special education services, support staff, job coaches, community services, and inclusion aren't extras. They are often the infrastructure that makes meaningful participation possible. Stephen, Lori and Stephanie also tackle the growing rhetoric surrounding disability online, including arguments that students with IEPs don't belong in general education classrooms. They push back against the idea that inclusion takes something away from other students and discuss the very real benefits inclusion can have for everyone. They also examine the difference between genuinely valuing people with Down syndrome and reducing them to inspirational stories, angels, or objects of pity. The discussion eventually reaches the larger cultural conversation around disability, genetic testing, and emerging technologies designed to select or optimize certain traits in children. Stephanie emphasizes that people with disabilities and disability advocacy organizations must be part of conversations about policies, services, and new technologies from the beginning, rather than being consulted after decisions have already been made. This episode doesn't pretend that the challenges are small. But it also refuses to leave families with fear. The message throughout is clear: know your rights, know your history, know what is happening, find your allies and use your voice. The rights that families have fought for have not simply disappeared. But protecting them may require more vigilance, more participation, and more people willing to stand together. As the conversation comes back to again and again, this isn't only about disability rights. It's about equality, inclusion, belonging, and how we choose to treat one another.

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  Episode #207

  207. The Back-to-School Anxiety No One Talks About in Special Education

  Aug 9, 202641 min

  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 place from day one. In this episode, we talk about the back-to-school anxiety no one talks about: the pressure of IEPs, challenges with the school and the reality our families face each school year. If you’re preparing for a new school year with an IEP, this conversation will help you feel seen, prepared and less alone. Episode Transcript: https://ifweknewthen701833686.wpcomstaging.com/2026/08/08/207-the-back-to-school-anxiety-no-one-talks-about-in-special-education/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. 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.

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  Episode #206

  206. A Pediatrician Answers All Your Down Syndrome Questions

  Jul 23, 20261h 27m

  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 son, Sejal, who was in his first grade class. She tells us about Sejal coming home talking about “adaptive PE,” describing how they worked on balance together and later insisting on “no dis-inclusion” after Lori visited the class. Those are moments we don’t always get to see, since Liam doesn’t come home and tell us his day. We also get into IEPs and the need to move away from standard plans. Dr. Gera attends these meetings for her patients and we compare that to what we’ve experienced advocating for Liam, where the details matter and one plan never fits every child. Episode Transcript: https://ifweknewthen701833686.wpcomstaging.com/2026/07/23/206-a-pediatrician-answers-all-your-down-syndrome-questions/ 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. 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. ——— Summary In this episode, we sat down with Dr. Mona Patel Gera from Children’s Hospital Los Angeles, and we opened with something every parent recognizes: that long list that comes with a Down syndrome diagnosis. We said it out loud the way we remember hearing it in those early days, a “laundry list” that can take the air out of the room. Dr. Gera didn’t rush past that. She walked through what that list actually means in practice, what questions to ask, and how to separate what needs attention now from what simply needs to be monitored. We’ve had enough appointments with Liam over the years to know the difference between urgency and noise, and this conversation stayed grounded in that reality. What made this conversation different is that Dr. Gera knows Liam outside of a chart. Her son, Sejal, was in first grade with him. She told us about the day Sejal came home talking about “adaptive PE,” using language she usually hears in a clinical setting. He described bouncing a large ball back and forth with Liam and working on balance, and she stopped in her tracks because that overlap between her professional world and her child’s classroom rarely shows up that clearly. We’ve sat in plenty of IEP meetings where those same services are discussed in abstract terms, so hearing it come back through a six-year-old’s voice landed differently. She also shared something we hadn’t heard before. After Lori went into the class to talk about Down syndrome, Sejal started using the phrase “no dis-inclusion.” He kept repeating it at school, insisting that kids couldn’t be left out just because they didn’t know the rules of a game. We didn’t know that moment had stuck with him. Liam doesn’t come home and tell us these stories, and we’ve learned over time that a lot of his day lives outside our view. Hearing how another child understood friendship with Liam filled in a gap we didn’t know was there. We spent time on inclusion from both sides. Dr. Gera talked about the “bi-directional” value she sees as a pediatrician, and we recognized that immediately because we’ve watched it happen in Liam’s classrooms. She attends IEP meetings for her patients and pushes against what she called “cookie cutter plans.” We’ve sat across from teams where the same template gets reused, and we’ve also seen what happens when someone takes the time to individualize goals and services. She was specific about looking at each child’s skill set and matching therapies to that child, not the system. By the end of the conversation, we weren’t trying to simplify anything. The list still exists. The school system still requires advocacy. But sitting with someone who has written IEPs, treated patients with Down syndrome, and watched her own son learn alongside Liam gave the whole discussion a kind of clarity we respect. It sounded like real life because it is.

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  Episode #205

  205. If Inclusion Is the Goal, Why Are So Many Still Left Out?

  Jul 16, 20261h 12m

  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 experience and emotional connection. He shares his work in designing immersive experiences that allow participants to “walk in someone else’s shoes,” not to fully understand another person’s life, but to recognize that their experiences are just as real and valid. We connect this idea to our own advocacy, especially in education, where inclusion is often discussed but not consistently practiced. We talk about how language, perspective and emotional awareness shape the way people show up for one another, and how empathy can shift interactions, even in difficult situations like fighting for a child’s rights. This episode explores the role of emotional education, the limits of traditional definitions of empathy and the importance of creating environments where differences are not just accommodated, but recognized as valid. Empathable: https://empathable.com Playground of Empathy: https://empathable.com/playground/ Episode Transcript: https://ifweknewthen701833686.wpcomstaging.com/2026/07/15/205-if-inclusion-is-the-goal-why-are-so-many-still-left-out/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. 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. -------- Summary In this episode of If We Knew Then, Stephen and Lori Saux sit down with Micah Kessel, founder of Playground of Empathy and creator of Empathable, to examine what inclusion actually looks like in practice—and why so many current efforts fall short. What begins as a conversation about “inclusive playgrounds” quickly shifts into a deeper discussion about the difference between accessibility, inclusion, and true belonging. Micah explains that many inclusion programs rely on rules, compliance, or negative messaging—telling people what not to do—rather than creating meaningful understanding. He shares that most approaches treat inclusion as a concept to be learned, instead of an experience to be felt. His work focuses on immersive, emotion-centered design that allows people to encounter perspectives different from their own. The goal is not to fully understand someone else’s experience, which he notes is impossible, but to recognize that their experience is just as valid as your own. Stephen and Lori connect this to their own journey advocating for their son Liam, especially within the education system. They reflect on how often the word “inclusion” is used without a shared understanding of what it requires in practice. They discuss the gap between language and action, and how easily systems can appear supportive while still excluding students in meaningful ways. The conversation also explores the role of language in shaping inclusion. Micah highlights the difference between directive language and invitational language—phrases that create space, curiosity, and connection. This shift, he argues, is key to fostering a sense of belonging. Lori emphasizes how powerful words have been in their advocacy, particularly in IEP meetings and school settings, where language can either open doors or quietly limit opportunity. A central idea in the episode is redefining empathy. Rather than viewing empathy as the ability to understand or share someone else’s feelings, Micah reframes it as the ability to recognize and validate another person’s experience. This distinction removes pressure to “get it right” and instead focuses on acknowledging that multiple realities can exist at the same time. Throughout the episode, the discussion returns to a core question: what would change if we truly saw other people’s experiences as valid as our own? For families navigating disability, education, and advocacy, this question has real consequences. The episode offers a perspective shift—from teaching inclusion as a concept to building it through experience—and challenges listeners to reconsider how they show up for others in everyday interactions.

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  Episode #204

  204. Siblings Of Siblings With Down Syndrome

  Jul 6, 20261h 4m

  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 about school inclusion, peer interactions and the pressure to explain Down syndrome to others. Brian Skotko discusses growing up with a sister with Down syndrome and how access to education has changed over time, while noting that gaps still exist. Sue Levine explains her work as a social worker running sibling support groups and outlines how those programs focus on facts, feelings and problem solving. This episode covers common experiences reported by siblings, including frustration, embarrassment and isolation, as well as the expectation that siblings should have answers for others. We discuss how sibling workshops are structured, how questions are gathered from participants and how those insights shaped the book. We also touch upon how parents can respond to sibling emotions and why allowing space for those feelings matters. 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.wpcomstaging.com/2026/07/05/204-siblings/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. 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. -------- Summary: Stephen and Lori Saux are joined by their daughter Sophia and guests Dr. Brian Skotko and Sue Levine to discuss the experience of siblings of individuals with Down syndrome. The conversation is guided in part by the book "Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters," which was built from questions collected during sibling workshops across the United States. Sophia leads parts of the discussion by asking questions based on her own experiences. She describes situations where peers expect her to explain her brother Liam’s behavior and diagnosis, and how that expectation can create pressure. She also talks about moments when she noticed differences in how her brother was treated in school, including times when supports were not provided. She explains that these experiences can be difficult to share with friends who do not have similar family dynamics. Brian Skotko shares his perspective as a sibling of a sister with Down syndrome and explains how access to education has changed over the past several decades. He states that his sister did not receive the same educational opportunities he did, and while inclusion has improved, barriers still exist in both K-12 and postsecondary settings. Sue Levine describes her work as a social worker and co-founder of a nonprofit in New Jersey that provides early intervention and family support. She explains that her sibling workshops include participants with siblings who have a range of disabilities, with Down syndrome and autism being the most common. The guests explain how the book was developed using real questions submitted anonymously by siblings during workshops. These questions address topics that siblings may hesitate to ask at home. The workshops and the book focus on three areas: providing accurate information about Down syndrome, creating space to discuss emotions, and offering strategies for problem solving. A significant part of the discussion centers on common emotional experiences for siblings. These include frustration, embarrassment, guilt, and feeling isolated. The guests state that these reactions are typical and should be acknowledged rather than corrected in the moment. They recommend that parents allow siblings to experience emotions as they happen and revisit those moments later to talk through them. They also note that siblings may sometimes distance themselves in public situations, and that this behavior can be a way to cope rather than a sign of rejection. The episode also addresses the role of educators and how classroom environments influence peer understanding. Sue Levine gives an example of a classroom where students did not initially identify the child with Down syndrome, which she attributes to effective inclusion practices. In contrast, the hosts describe experiences where a lack of support or understanding from educators affected both Liam and Sophia. The conversation emphasizes that sibling experiences vary but often include shared patterns. The guests highlight the value of connecting siblings with others who have similar experiences, either through workshops or structured programs. They explain that these connections help reduce isolation and provide practical ways to handle common situations.

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