204. Siblings Of Siblings With Down Syndrome

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 [https://www.amazon.com/Fasten-Your-Seatbelt-Syndrome-Brothers/dp/1890627860]  Workshop for siblings:  https://siblingslearnaboutdownsyndrome.com [https://siblingslearnaboutdownsyndrome.com] YouTube: https://www.youtube.com/user/downsyndromesibbook [https://www.youtube.com/user/downsyndromesibbook] Episode Transcript: https://ifweknewthen701833686.wpcomstaging.com/2026/07/05/204-siblings/2/ [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.

203. A High School Diploma Is Attainable - May Mallari

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 [https://mallarilawgroup.com] Episode Transcript: https://ifweknewthen701833686.wpcomstaging.com/2026/06/24/203-a-high-school-diploma-is-attainable-may-mallari/2/ [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.

202. Alzheimer's And Down Syndrome - Dr. Brian Skotko

In this episode we revisit with Dr. Brian Skotko to talk about the impact of Alzheimer’s in the Down syndrome community and discuss some proactive steps that may help to improve the long-term wellness of people with Down syndrome. Down Syndrome Brain Train: https://www.downsyndromebraintrain.com [https://www.downsyndromebraintrain.com] Down Syndrome Clinic: https://www.dsc2u.org [https://www.dsc2u.org] Tar Heel Reader Book Collection: https://tarheelreader.org [https://tarheelreader.org] Find A Nutritionist Near You: https://www.eatright.org [https://www.eatright.org] Dr. Brian’s Book “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters”: https://www.amazon.com/Fasten-Seatbelt-Brian-Skotko-Levine/dp/1890627860 [https://www.amazon.com/Fasten-Seatbelt-Brian-Skotko-Levine/dp/1890627860] Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/06/17/202/2/ [https://ifweknewthen701833686.wordpress.com/2026/06/17/202/2/] Please follow us on Twitter @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 a returning conversation with Dr. Brian Skotko, Director of the Down Syndrome Program at Massachusetts General Hospital, focusing on Alzheimer’s disease and its impact on the Down syndrome community. Stephen and Lori Saux open the discussion by acknowledging how difficult, but necessary, it is to talk about Alzheimer’s, emphasizing that honest information empowers families to prepare, advocate, and support their loved ones. Dr. Skotko begins by grounding the conversation in clear, evidence-based facts. While Alzheimer’s is more common in individuals with Down syndrome, it is not universal. He explains that there are no documented cases before age 35, but after that age, risk increases. Approximately 40% of individuals show signs by age 40, about 50% by age 50, and 60% by age 60. Importantly, he clarifies a widespread misconception: although nearly all individuals with Down syndrome develop the brain changes associated with Alzheimer’s (such as plaque buildup), not all will experience symptoms or dementia. The episode highlights how Alzheimer’s presents differently in individuals with Down syndrome. Rather than memory loss as a first sign, early indicators are often behavioral—changes in routine, mood, or increased anxiety. Seizures may also precede diagnosis. This difference makes accurate diagnosis more complex and underscores the danger of “diagnostic overshadowing,” where symptoms are incorrectly attributed to Alzheimer’s instead of treatable conditions like sleep apnea or thyroid issues. Dr. Skotko stresses the importance of thorough medical evaluation and working with professionals experienced in Down syndrome care. A key takeaway is the importance of establishing a baseline through a neuropsychological assessment around age 35. This allows families and clinicians to compare changes over time and make more accurate diagnoses. The hosts also emphasize the need to find qualified professionals who understand how to properly assess individuals with Down syndrome, as inaccurate evaluations can lead to misleading conclusions. The conversation then shifts toward prevention and proactive strategies. Dr. Skotko introduces his “SMART” approach, beginning with Social connections and Movement. Strong social networks are linked to better brain health, reinforcing the importance of inclusion and meaningful relationships throughout life. Exercise is described as critical “medicine” for the brain, activating cells that help clear harmful plaque buildup. However, he notes that fewer than 1% of individuals with Down syndrome meet recommended exercise guidelines, pointing to systemic barriers and low expectations as contributing factors. Stephen and Lori connect these insights back to inclusion, advocating for equal opportunities in education, social settings and physical activity. They highlight how societal assumptions about limitations can restrict access to experiences that are not only enriching, but potentially protective against cognitive decline. Throughout the episode, the tone remains both realistic and hopeful. While acknowledging the challenges Alzheimer’s presents, the conversation centers on empowerment through accurate information, early planning, community support and intentional lifestyle choices that can improve long-term outcomes for individuals with Down syndrome.

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/ [https://lettercase.org/]   Down Syndrome Pregnancy: https://downsyndromepregnancy.org/ [https://downsyndromepregnancy.org/]   Genetic Support Foundation: https://geneticsupportfoundation.org/ [https://geneticsupportfoundation.org/]   Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/06/10/201-stephanie-hall-meredith/2/ [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.

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/ [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.