204. Siblings Of Siblings With Down Syndrome

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/

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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.