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If We Knew Then - Down Syndrome Podcast

If We Knew Then - Down Syndrome Podcast
Author: Stephen and Lori Saux
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Description
We are Stephen and Lori Saux and welcome to the If We Knew Then Podcast. We are parents of two children and one of them has Down Syndrome, Liam. When Liam was born we didn’t know very much about Down Syndrome and most of the information we did have didn’t seem very hopeful and positive. Well this podcast aims to share honest and useful conversations about supports, therapies, education and society as it pertains to Down Syndrome advocacy and parenting.
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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 day to support speech development.
We discuss the challenges families face in accessing quality speech therapy, how to advocate for services and why creating small opportunities for communication can have lasting impact. Jeaneen also opens up about her son’s diagnosis, how it shifted her perspective as both a mother and a professional and the importance of empowering parents to see that they are doing a good job.
Jeaneen fills this conversation with hope, compassion and actionable tools for parents navigating speech development and early intervention. She reminds us that our children can achieve more when we give them space, support and belief in their potential.
Website: https://www.playdumbandsabotage.com
IG: @playdumbandsabotage
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/09/07/191-play-dumb-and-sabotage-with-jeaneen-yang/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.
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 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.
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 learns differently and the lessons we can take from something as simple and profound as a caterpillar’s metamorphosis. Along the way, they share honest reflections on judgment, resilience, and the hope that comes from remembering that every transition, messy as it may be, is also a space for transformation.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/08/24/189-lets-talk-about-transitions-middle-school-to-high-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.
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.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.
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 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.
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/video/detail/B09LCDLPFV/ref=atv_dp_share_cu_r
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/05/04/186-life-and-birth-on-amazon-prime-with-melissa-kynoch/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.
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 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.
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 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.
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 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.
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://ifweknewthen701833686.wordpress.com/2025/03/20/182-wdsd-2025/2/
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.
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 tubi: https://tubitv.com/movies/697442/forget-me-not-inclusion-in-the-classroom?utm_campaign=web-sharing
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/03/02/181-olivier-and-hilda-bernier-and-their-iep-experience/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.
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 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.
Today we are joined by Hilda and Olivier, who are documentarians of a fantastic film “Forget Me Not”. This film tells the story of our children’s fight for an equal education and raises the question of inclusion versus segregation. It’s a documentary that is so important to making changes in the lives of individuals with Down syndrome.
Website: https://forgetmenotdocumentary.com
Streaming FREE On tubi: https://tubitv.com/movies/697442/forget-me-not-inclusion-in-the-classroom?utm_campaign=web-sharing
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/09/179-forget-me-not/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.
In July 2025, DSDN will host their annual Rockin' Dad Retreat for fathers of children with Down Syndrome to gather from across the country. We are joined again by Ben Hughes to give us all the details of this year’s event and also an update on his own journey.
Retreat Details - WHEN: July 11-12, 2025, WHERE: Hilton San Diego Gaslamp Quarter, San Diego, CA
Registration info: https://www.dsdiagnosisnetwork.org/dad-retreat-registration
Ben’s email: ben@dsdiagnosisnetwork.org
Ben’s Personal Fundraising Page: https://dsdn.networkforgood.com/projects/237847-ben-hughes-s-fundraiser
Get the DSDN App today! https://www.dsdiagnosisnetwork.org/dsdn-app
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/02/178-the-2025-dsdn-rockin-dad-retreat-ben-hughes/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.
Lori recorded this episode in October but what is very apparent is how challenges and the unknown are an everyday thing that helps tell our stories, In this episode Maezen talks about finding our space and our 'me' time.
Karen Maezen Miller’s Website: https://karenmaezenmiller.com
Maezen’s books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/01/27/177-showing-up-for-the-challenges-karen-maezen-miller/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.
Steven Gustafson is a founding member and bassist of the band 10,000 Maniacs. His sister, Cathy, had Down syndrome and we got a chance to discuss with him the impact she had on his life and the lives around her. Today we revisit that interview to share this sibling love story.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/01/27/176-revisiting-10000-maniacs-founding-member-steven-gustafson/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.
This week we revisit our conversation with Sid and Vaish Sarathy. Sid, who has the duel diagnoses of autism and Down syndrome. Although he is non-Speaking, Sid is a poet with two published books. Dr. Vaish Sarathy is a functional nutrition practitioner and science educator. She is the founder of Functional Nutrition for Kids and Plum Pudding Chemistry, both practices designed to optimize the learning potential of kids with Down syndrome and/or autism using both functional medicine and non-linear education principles. In this episode, we discuss their journey with communication, breaking down barriers of misperception and limiting thoughts to support Sid in freeing his voice and the responsibility that freedom brings with it.
Sid’s Poetry Books: https://push-press.blogspot.com
Sid’s Instagram: https://www.instagram.com/downlikesid/
Vaish’s Website: https://functionalnutritionforkids.com
Vaish’s Podcast Funtional Nutrition & Learning For Kids: https://podcasts.apple.com/us/podcast/functional-nutrition-and-learning-for-kids/id1478145610
Rapid Prompting Method (RPM): https://www.halo-soma.org
Chris Martin’s Website: www.UnrestrictedInterest.com
Connections Academy: https://www.connectionsacademy.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/06/15/175-communicating-our-stories-with-sid-and-vaish-sarathy/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.
This week we once again sit down with Julie Picot but this time we are briefly joined by her daughter Elyse. We take a deep dive on the speech and reading journey in our community and discuss different ways to advocate for our children.
Teach Your Child To Read in 100 Easy Lessons: https://a.co/d/3CEtpLY
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/06/09/174-advocating-for-speech-therapy-julie-picot/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.
This week we revisit our interview with Jake Pratt, an inspiring young man from Vestavia Hills, Alabama who has never let expectations define him.
From scoring a touchdown on his high school football team, to graduating from the Clemson LIFE program, to working two jobs (including his dream role at UPS), Jake continues to show the world what true inclusion and opportunity look like.
Alongside his mom Kathy and his sister Amy, Jake shares his story of perseverance, possibility and the endless value of believing in our children. His journey reminds us all that people with Down syndrome deserve not just a seat at the table, but the chance to thrive.
Jake’s UPS Commercial: https://youtu.be/fw97dqK6uiM
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/05/27/173-the-endless-possibilities-of-people-with-down-syndrome/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.
Today we celebrate all the powerful mothers who give so much to their children day in and day out. Remember how strong you are. The world runs on that power and we thank you.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/05/11/172-happy-mothers-day-we-celebrate-you/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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