If We Knew Then - Down Syndrome Podcast

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 a...

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 t...

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...

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 dia...

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...

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episode, we take a hard look at that phrase, where it comes from, why it’s been so widely repeated and why we feel it’s outdated and harmful.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. T...

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 @ifwe...

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...

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...

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 o...

In this episode, we sit down with How I Met Your Mother co-creator Craig Thomas to talk about his new novel, That’s Not How It Happened. The novel is about a family whose lives are thrown into turmoil when a Hollywood producer turns their story into a movie, forcing them to confront their differing perspectives on their past and the challenges of raising their son, Emmett, who has Down syndrome. I...

When schools treat accommodations like a gift instead of a legal right, students with disabilities are the ones who pay the price. In this episode, we share our firsthand experiences navigating our son's high school IEP. From unimplemented accommodations to misplaced assessments and the constant reminder that equity isn’t optional. We unpack what it really means to “access the curriculum,” how IDE...

In this episode we revisit a conversation with our longtime pediatrician, Dr. Ilona Kleiner, who has been with our family since the day Sophia was born and has guided us through Liam’s journey with wisdom, honesty and compassion. Dr. Kleiner shares her perspective on treating children as whole individuals far beyond a diagnoses or statistics and the profound impact that kind of care can have on bo...

Today we  sit down with speech-language pathologist and author Janine Tang to talk about her new book "Play Dumb and Sabotage: Mindfully Under-Anticipating the Child’s Needs and Creating Opportunities to Practice Language". Drawing from more than two decades as a therapist and her personal journey as a parent of a child with a brain injury, Jeaneen shares practical strategies parents can use every...

In this episode, we discuss the challenges of a new school year and how we advocate to create a foundation of support for Liam, with the intentions of creating a narrative of inclusion. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/08/30/190-advocating-through-the-challenges-of-a-new-school-year/2/ Please follow us on X @ifweknewthenPOD, you can drop us a line on our Faceboo...

In this episode Stephen and Lori sit down on a quiet summer morning to reflect on the season of transitions, both for their family and for their son Liam, who just graduated middle school. From the stillness of summer mornings to the in-between spaces of growth, they talk about what it means to be present during times of change, the challenges and beauty of navigating education with a child who le...

Every year we face the stresses of annual appointments and assessments. Today we talk about game plans and strategies to help prepare for them. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/05/26/188-preparing-for-annual-appointments/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www....

Happy Mother’s Day to all the mothers in this beautiful Down syndrome community. You are a force and we thank and celebrate you. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/05/11/187-happy-mothers-day/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...

This week we are revisiting our interview with Melissa Kynoch, known by many for being featured on the BBC documentary LIFE AND BIRTH. Millions of people have had a chance to watch her positive attitude in the face of her son Bertie's Down syndrome diagnosis. Now, five years later, the docu-series is available in the United States on Amazon Prime. Season 1, Episode 6: https://www.amazon.com/gp/vid...

In this episode we discuss the need and power for us to cultivate self pride and worth within the disability community. In doing so, we nullify the damaging words and opinions of those who wish to label and minimize individuals with disabilities or anyone for that matter. Episode Transcript:  Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD...

Today we are joined again by Mrs. Christina Aries, the Director of Adult Development at Citizens of the World Charter Schools for the second part of our discussion about brain development in the adolescent years. Episode Transcript: 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...

Today we are joined by Mrs. Christina Aries, the Director of Adult Development at Citizens of the World Charter Schools for a two-part discussion about brain development in the adolescent years. Episode Transcript:  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 qu...

It’s World Down Syndrome Day 2025 and we did it! We released an episode on March 21st. Many in our community do so well at preparing for this day every year and we greatly appreciate them but also, here’s to all those that feel like they are always behind or that their ‘to do” list is getting bigger, not smaller. We celebrate you and your loved ones today! Episode Transcript: https://ifweknewthen7...

This week we have another conversation with filmmakers Olivier and Hilda to discuss their IEP experience featured in their film FORGET ME NOT: INCLUSION IN THE CLASSROOM. These talks not only shows us that we are not alone in this fight, but also gives us some powerful information that we can use in our own IEP meetings. Documentary Website: https://forgetmenotdocumentary.com Streaming FREE On tub...

Happy Birthday Liam! In this week’s episode we discuss the lessons we have learned over the last 15 years in both education, behavior and societal changes. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/24/180-liam-turns-15-what-have-we-learned-in-this-journey/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or vi...