If We Knew Then - Down Syndrome Podcast

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.

199. Being Told To Grieve The Child You Didn't Have

What happens when one of the first things you’re told after a Down syndrome diagnosis is to grieve the child you didn’t have? In this episode, we take a hard look at that phrase, where it comes from, why it’s been so widely repeated and why we feel it’s outdated and harmful. We unpack how these words can shape a parent’s mindset, feelings and the initial relationship they build with their child. This conversation is part of a larger discussion about the kinds of advice parents often receive in those early moments. Well-meaning, perhaps, but not always aligned with the lived experiences of families raising children with Down syndrome. We explore what needs to change and what parents actually need to hear instead. Honesty, possibility and support without assumptions. If you’ve ever questioned the narratives surrounding disability or want to better understand how language impacts families, this episode invites you to rethink what we’ve long taken for granted Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/05/28/199-being-told-to-grieve-the-child-you-didnt-have/2/ [https://ifweknewthen701833686.wordpress.com/2026/05/28/199-being-told-to-grieve-the-child-you-didnt-have/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: In this episode of the If We Knew Then podcast, hosts Stephen and Lori Saux discuss the harmful and outdated advice often given to parents following a Down syndrome diagnosis: the instruction to "grieve the child you didn't have." Key themes from the discussion include: The Inappropriateness of Forced Grief: The hosts argue that telling new parents to grieve is a form of bullying that ignores the immediate reality of their child’s life and potential (0:45 - 2:20, 14:00 - 15:45). They emphasize that this mindset can rob parents of precious time and create unnecessary, negative expectations. The hosts address the popular essay "Welcome to Holland," which compares the experience of parenting a child with a disability to taking an unexpected trip to a different country. While acknowledging the original author's intent to bring visibility to Down syndrome in 1987, the hosts find the metaphor harmful because it perpetuates the idea that their child's life is a "consolation prize" or a disappointment (31:00 - 32:30, 35:20 - 38:00). Lori and Stephen advocate for moving away from narratives of loss. They suggest that instead of grief, parents should be offered support, resources, and an appreciation for the reality of their child's unique life (18:15 - 19:15, 42:45 - 43:30). Throughout the episode, the hosts stress that nobody has the right to define a child's future or dictate a parent’s emotional response (27:00 - 28:30). They celebrate the strength, honesty, and capability they have witnessed in their son, Liam, and encourage other parents to ignore societal stereotypes and focus on building a genuine, loving relationship with their child (28:30 - 30:00, 42:30 - 43:30).

198. It's Liam's 16th Birthday!

This episode is a celebration of Liam and also a reflection of what the last 16 years have been. We discuss unfair societal constructs along with systemic flaws in education that people with Down syndrome face and how our collective advocacy will make a difference.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/02/18/198-its-liams-16th-birthday/2/ [https://ifweknewthen701833686.wordpress.com/2026/02/18/198-its-liams-16th-birthday/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 [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: In this episode, the core message is the necessity of creating an "airtight" Individualized Education Program (IEP) document. Stephen and Lori Saux use a compelling "lottery" analogy: if everyone currently involved in a student's education were to win the lottery and not show up the next day, the IEP document itself must be clear enough to define exactly what that student's day should look like. Key points include: Sustainability: The document must be able to stand on its own, regardless of which specific staff members are present. Precision: It should be so well-written and detailed that it cannot be misinterpreted by new people entering the student's educational life. Vision: An effective IEP must surpass the individual visions of the "adults in the room" to ensure consistent support through every step of the student's education.