『If We Knew Then - Down Syndrome Podcast』のカバーアート

If We Knew Then - Down Syndrome Podcast

If We Knew Then - Down Syndrome Podcast

著者： Stephen and Lori Saux
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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 ...Copyright 2026 - All rights reserved. 人間関係 子育て
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  • 205. If Inclusion Is the Goal, Why Are So Many Still Left Out?

    205. If Inclusion Is the Goal, Why Are So Many Still Left Out?
    2026/07/16
    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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    1 時間 12 分
  • 204. Siblings Of Siblings With Down Syndrome

    204. Siblings Of Siblings With Down Syndrome
    2026/07/06
    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...
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    1 時間 4 分
  • 203. A High School Diploma Is Attainable - May Mallari

    203. A High School Diploma Is Attainable - May Mallari
    2026/06/25
    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 given is not always complete. This is a great conversation about knowing your options, understanding how decisions are made and asking better questions before paths are set. May is Founder and Principal of the Mallari Law Firm and has nearly 3 decades of experience representing workers exclusively in the area of labor and employment matters. Mallari Law Group: https://mallarilawgroup.com Episode Transcript: https://ifweknewthen701833686.wpcomstaging.com/2026/06/24/203-a-high-school-diploma-is-attainable-may-mallari/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: This episode of If We Knew Then features attorney and parent advocate May Mallari, who discusses education decisions for students with Down syndrome and how early assumptions can shape long-term outcomes. Mallari’s son, Devin, was placed on an alternate curriculum starting in elementary school but later earned a standard high school diploma. Hosts, Stephen and Lori Saux, focus on how that outcome challenged expectations that are often set early in a child’s education. Mallari explains that Individualized Education Program meetings were consistent and collaborative in her experience within the Los Angeles Unified School District, though she describes the structure of those meetings as starting from a deficit-based perspective. She notes that discussions often begin with what a child cannot do, which can influence decisions about placement and curriculum. The conversation examines how curriculum placement decisions are made and how they affect access to a diploma. Lori Saux explains that her family pushed to keep their son on a general education curriculum because of the connection between coursework and post-secondary options. Mallari’s experience with Devin shows that placement on an alternate track does not always prevent a student from later meeting diploma requirements, though that path is not typically presented to families at the outset. Mallari outlines the importance of asking specific questions during IEP meetings, including how decisions will affect long-term outcomes such as graduation status. She emphasizes that families are not always given complete information about available options or the consequences of early placement decisions. She encourages parents to request clarity about how curriculum choices align with diploma eligibility. The discussion also covers transition planning after age 18. Mallari describes a gap in structured support once students exit the school system. She explains that services become less defined and families must take a more active role in identifying supports. This includes decisions about conservatorship and how to structure adult services. Mallari provides an overview of California’s Self-Determination Program through regional centers. She explains that the program allows individuals and families to direct how funding is used for services rather than relying on preset vendors. She completed training to become an independent facilitator, a role that helps families create a person-centered plan outlining needed supports. She notes that while the program offers flexibility, it can be difficult to navigate due to paperwork and administrative requirements. Stephen and Lori relate this to their own experience, describing challenges in understanding and accessing the program despite prior exposure. Mallari states that the process begins with creating a detailed plan tailored to the individual, which is then submitted for approval. She adds that the program may be more useful as individuals reach adulthood, when educational supports are no longer in place. Throughout the episode, the focus remains on decision-making. They all stress the need for families to understand how educational paths are set, what assumptions are being made, and how to question recommendations that may limit future options. Devin’s path to a diploma is presented as a case that contrasts with common expectations and illustrates the importance of reviewing decisions over time.
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    1 時間 27 分
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