If We Knew Then - Down Syndrome Podcast

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.
 
We also get into IEPs and the need to move away from standard plans. Dr. Gera attends these meetings for her patients and we compare that to what we’ve experienced advocating for Liam, where the details matter and one plan never fits every child.
Episode Transcript: https://ifweknewthen701833686.wpcomstaging.com/2026/07/23/206-a-pediatrician-answers-all-your-down-syndrome-questions/
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.
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Summary
In this episode, we sat down with Dr. Mona Patel Gera from Children’s Hospital Los Angeles, and we opened with something every parent recognizes: that long list that comes with a Down syndrome diagnosis. We said it out loud the way we remember hearing it in those early days, a “laundry list” that can take the air out of the room. Dr. Gera didn’t rush past that. She walked through what that list actually means in practice, what questions to ask, and how to separate what needs attention now from what simply needs to be monitored. We’ve had enough appointments with Liam over the years to know the difference between urgency and noise, and this conversation stayed grounded in that reality.
 
What made this conversation different is that Dr. Gera knows Liam outside of a chart. Her son, Sejal, was in first grade with him. She told us about the day Sejal came home talking about “adaptive PE,” using language she usually hears in a clinical setting. He described bouncing a large ball back and forth with Liam and working on balance, and she stopped in her tracks because that overlap between her professional world and her child’s classroom rarely shows up that clearly. We’ve sat in plenty of IEP meetings where those same services are discussed in abstract terms, so hearing it come back through a six-year-old’s voice landed differently.
She also shared something we hadn’t heard before. After Lori went into the class to talk about Down syndrome, Sejal started using the phrase “no dis-inclusion.” He kept repeating it at school, insisting that kids couldn’t be left out just because they didn’t know the rules of a game. We didn’t know that moment had stuck with him. Liam doesn’t come home and tell us these stories, and we’ve learned over time that a lot of his day lives outside our view. Hearing how another child understood friendship with Liam filled in a gap we didn’t know was there.
We spent time on inclusion from both sides. Dr. Gera talked about the “bi-directional” value she sees as a pediatrician, and we recognized that immediately because we’ve watched it happen in Liam’s classrooms. She attends IEP meetings for her patients and pushes against what she called “cookie cutter plans.” We’ve sat across from teams where the same template gets reused, and we’ve also seen what happens when someone takes the time to individualize goals and services. She was specific about looking at each child’s skill set and matching therapies to that child, not the system.
By the end of the conversation, we weren’t trying to simplify anything. The list still exists. The school system still requires advocacy. But sitting with someone who has written IEPs, treated patients with Down syndrome, and watched her own son learn alongside Liam gave the whole discussion a kind of clarity we respect. It sounded like real life because it is.

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.
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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.
 

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.
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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.
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.
 

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
 
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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.
 

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
Down Syndrome Clinic: https://www.dsc2u.org
Tar Heel Reader Book Collection: https://tarheelreader.org
Find A Nutritionist Near You: 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
Episode Transcript: 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.
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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.

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/
 
Down Syndrome Pregnancy: https://downsyndromepregnancy.org/
 
Genetic Support Foundation: https://geneticsupportfoundation.org/
 
Episode Transcript: 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.
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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.
 

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/
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.
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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.
 

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/
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.
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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).
 

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/
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.
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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.
 

We reconnect with Melissa Kynoch, whom many will remember from the BBC documentary Life and Birth. Millions of viewers around the world were inspired by Melissa’s positivity and grace when her son Bertie was born with Down syndrome. Now, fix years later, Life and Birth is available in the United States on Amazon Prime, giving a whole new audience the opportunity to experience their story.
Melissa shares an update on life and how Bertie is doing now that he’s in school. It’s a beautiful reflection on growth, joy and continuing to embrace each milestone with love and optimism.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2026/02/02/an-update-with-melissa-kynoch-berties-in-school/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.
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Summary:
In this episode of If We Knew Then, Stephen and Lori reconnect with Melissa Kynoch, a mother from Birmingham, England, whose journey with her son Bertie first reached millions through the BBC series Life and Birth. Now available to U.S. audiences, Melissa’s story continues to resonate as a powerful example of advocacy, perspective, and redefining expectations around a Down syndrome diagnosis. Melissa reflects on her experience receiving Bertie’s prenatal diagnosis, emphasizing her determination to protect the joy of her pregnancy. Knowing Bertie would be her last child, and that he would require early heart surgery, she chose to focus on what mattered most: becoming his mother. Rather than absorbing fear-based narratives, she intentionally rejected negativity and prioritized connection, preparation, and celebration. The conversation highlights how differently a diagnosis can be delivered and how profoundly that delivery shapes a family’s early experience. Stephen and Lori contrast Melissa’s proactive and supported journey with their own, which was marked by discouraging messaging and isolation. This contrast underscores a central theme of the episode: the critical importance of early, positive, and accurate information for parents. As Lori notes, “early intervention” applies not just to children, but to parents as well. Melissa credits much of her mindset and resilience to immediate community support. Before Bertie was born, she connected with local Down syndrome groups, attended meetups, and built relationships that continued through his birth and beyond. She also found strength in resources like the “Wouldn’t Change a Thing” initiative, which provided images and stories focused on what life can be, rather than what might go wrong. This network offered reassurance during Bertie’s early medical challenges, including his successful heart surgery and recovery. Now approaching six years old, Bertie is described as energetic, joyful, and strong—qualities Melissa says were evident even in his earliest days. The discussion touches on the adaptability often seen in children with Down syndrome, particularly in how Bertie has thrived despite his heart condition. His progress serves as a reminder that developmental timelines may differ, but growth continues in meaningful and often surprising ways. The episode also explores communication development. Melissa shares Bertie’s journey with Makaton signing and emerging speech, emphasizing her belief that understanding and expression were always present, even before words came. Stephen and Lori relate this to their son Liam’s experience, reinforcing the idea that communication takes many forms and should be recognized and supported accordingly. Throughout the conversation, humor and authenticity ground the discussion in real family life—interruptions, laughter, and all. These moments reflect the very reality that many parents are told may never exist. Instead of loss, the episode presents a narrative filled with connection, growth, and joy. Ultimately, this episode reinforces a powerful message: when families are given support, community, and truthful representation, they are better equipped to navigate their journey with confidence. Melissa’s story serves not only as encouragement for new parents but also as a call to shift the narrative—away from limitation and toward possibility.
 

Beth Gibson, Founder & Executive Director of Buddy Up for Life/Buddy Up Tennis, founded Buddy Up for Life in 2008 when her then 3 ½-year-old son, Will, who has Down syndrome, wanted to play tennis with his older brother. Beth realized there was a void in fitness programs for people with Down syndrome. And took the initiative to make her son’s dreams a reality, holding the first Buddy Up Tennis Clinic in December 2008 in Columbus, Ohio. Since then, the organization has expanded to 15 programs across three pillars (health & wellness, education, and friendship), with tennis as a cornerstone that has seen exponential growth nationwide. Buddy Up Tennis is now a weekly, high-energy adaptive tennis program for athletes ages 5 and up where volunteer buddies are partnered with athletes to provide support, develop friendships, and have fun while playing tennis. The program is now nationally recognized as the leader in impacting the lives of individuals with Down syndrome and Buddy Up for Life currently has 850 athletes, 1,400 buddies, 130 coaches and instructors and 42 chapters nationwide, a number that continues to grow. Beth continues to lead Buddy Up for Life, with her son, Will, now a college student. She has made it her life’s mission to embrace what it means to live with Down syndrome and help participants live a life that redefines expectations and breaks traditional boundaries.
Learn more at their Website and Instagram.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/11/25/196-buddy-up-for-life-with-beth-gibson/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.

Here is another beautiful conversation we had with Dr. Vaish Sarathy and her son, poet Sid Ghosh who has published a book of poetry titled Yellow Flower Fills Me Whole. Sid has a duel diagnosis of Autism and Down syndrome and previously appeared on the podcast, with Vaish, to discuss non-linear education and how he communicates using a letter board. 
Sid’s poetry book is available through Amazon or at this Milkweed link: https://milkweed.org/book/yellow-flower-gills-me-whole
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/11/10/195-yellow-flower-gills-me-whole-poetry-by-sid-ghosh/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.
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Summary:
Episode 195 of the IF WE KNEW THEN podcast features a powerful and deeply reflective conversation with poet Sid Ghosh and his mother, Dr. Vaish Sarathy. Centered around Sid’s newly released poetry collection 'Yellow Flower Gills Me Whole', our discussion explores communication, identity, disability and the transformative power of expression.
 
Sid, an 18-year-old with Down syndrome and autism, communicates using a letterboard, spelling out his thoughts with intention and precision. We make a point to highlight how essential it is to witness this process visually, as it reveals not only how Sid communicates but also the depth and complexity of his thinking. What emerges quickly is that Sid does not experience language in conventional ways. He explains that he “thinks in poetry” because typical speech is difficult for him. This insight reframes assumptions about communication and intelligence, illustrating that expressive language can exist richly even when it looks different.
 
We dive into Sid’s creative process, which is rooted in consistent practice rather than structured composition. His poems, written over several years, are part of a daily or weekly ritual. Titles come last, reinforcing that his work begins as pure thought and evolves organically. His poetry is abstract yet deeply intentional, filled with metaphors that challenge readers to reconsider meaning, identity, and perception.
 
One of the most impactful part of the podcast episode centers on a poem titled “Interstices,” where Sid describes “gaps” left by neurotypical individuals. These gaps, he explains, are spaces where his life exists between societal expectations and misconceptions. Through guided interpretation, the conversation reveals a profound critique of how disability is framed, particularly by parents and society. Sid identifies two “knots”: sadness and the need for perfection. He suggests that the life of a person with a disability exists between these pressures. Between grief-driven narratives and unrealistic ideals.
 
This perspective leads to a powerful insight: that embracing disability with pride, rather than sadness or a fixation on perfection, is liberating. Sid defines “madness” (a word he reclaims) as “letting go,” associating it with freedom and self-acceptance. His poetry challenges dominant narratives that portray disability as tragedy, instead offering a vision of identity that is whole, complex and worthy of celebration.
 
Together, we also touch on real-world implications of these narratives. Sid shares discomfort with spaces where parental grief dominates, such as conferences, explaining how these discussions can feel limiting or harmful. We connect this to our own experiences as parents, reflecting on how societal narratives often overshadow the joy, growth and individuality of our son, Liam. We made sure to emphasize that many challenges associated with disability stem not from the condition itself, but from systemic barriers and ingrained biases.
 
Throughout the episode, Sid’s voice, both literal and poetic, serves as a reminder of the importance of listening to individuals with disabilities as authorities on their own experiences. His work resists tokenism and insists on full humanity, pushing back against reductive views.
 
Ultimately, this episode is not just about poetry. It is about redefining communication and embracing a more expansive understanding of identity. Sid’s words invite us to move beyond limiting narratives and to recognize the freedom that comes with authenticity and pride.