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

In this episode, we welcome Adam Franks from Yorkshire, England, the father behind Maisy & Dadda. Adam shares how raising his four-year-old daughter Maisy has transformed his understanding of Down syndrome, moving from the fear and uncertainty of her diagnosis to celebrating the life they're building together. We are excited for our listeners, who are also fans of Maisy & Dadda, to learn move about this duo and the change they are making by spreading their story. It's an honest conversation about changing perceptions, challenging expectations and recognizing that our children don't need to prove they belong. They already do. Episodes on YouTube: https://www.youtube.com/playlist?list=PLi4R9dL4avnOh5T8VEejTmDL15gKp2i_u Episode Transcript: https://ifweknewthen701833686.wpcomstaging.com/2026/10/10/209-maisy-daddy-with-adam-franks/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.

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. National Down Syndrome Congress - The Policy Pulse News Update: https://ndsccenter.org/policy/action-center/the-policy-pulse.html State Councils on Developmental Disabilities: https://acl.gov/programs/aging-and-disability-networks/state-councils-developmental-disabilities The ARC: https://thearc.org/policy-advocacy/ NDSS: https://ndss.org/policy Being Heumann: An Unrepentant Memoir of a Disability Rights Activist: https://www.amazon.com/dp/0807002801?lv=shuf&channelId=500&plpRedirect=mhFallback Episodes on YouTube: https://www.youtube.com/playlist?list=PLi4R9dL4avnOh5T8VEejTmDL15gKp2i_u 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. S

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.

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/ Episodes on YouTube: https://www.youtube.com/playlist?list=PLi4R9dL4avnOh5T8VEejTmDL15gKp2i_u 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 a

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 Episodes on YouTube: https://www.youtube.com/playlist?list=PLi4R9dL4avnOh5T8VEejTmDL15gKp2i_u 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 signific