If We Knew Then - Down Syndrome Podcast

This week we are honored to interview actress, writer, producer and director Lena Dunham. Lena cast our son, Liam, in her film SHARP STICK and it was one of the most supportive, inclusive and beautiful experiences we’ve had on this journey. Her set was a model environment for our society and we talk to her about how she developed her advocacy for so many marginalized groups and individuals, what s...

*Trigger Warning: The r-word is used in this conversation. This week we interview Lynette Louise who is board certified in Neurofeedback. We were very interested in the science of Neurofeedback but early on in the conversation we moved to a serious discussion about the use of the r-word and the reasons why Lynette uses it. This episode may feel a bit intense for many of you and we understand why,...

This week we get to talk to Dr. Brian Skotko again! Dr. Brian has some updates to DSC2U.org to discuss and we also chat about the T21RS International Conference that will be taking place in Long Beach, CA. June 9-12. Dr. Brian Skotko is the director of the Down Syndrome Program at Massachusetts General Hospital, a Board-certified medical geneticist and has dedicated his professional energies towar...

We were so fortunate to get to spend some time with Michelle and Paul Tesori. We met this Dynamic Duo through our good friend, actor Andy Buckley, and it is fitting that this episode is being released on PGA Championship weekend since Paul has been a PGA Tour caddie for nearly 20 years. Inspired by their son Isiah, Michelle and Paul created the Tesori Family Foundation to help support the Down syn...

Well here we are! We’ve learned so much in these two years and one hundred episodes and take this time to reflect on this experience and focus on where we go next. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/05/13/100-celebrating-100-episodes/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website ht...

Happy Mother’ Day! We dedicate this Mothers Day episode to celebrating your power and strength. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/05/06/99-remembering-your-power-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...

This week we discuss the details of the 2022 Easterseals Disability Film Challenge. We touch upon how and why we created this year's film, what the challenge has meant to our family in the last eight years and how allowing other's to share their stories is the key to true inclusion. Our Entry’s Youtube Link: https://youtu.be/O_ENIwMCKls Our Entry’s Website: www. JustForOneDayFilm.com All Our Previ...

In this episode we sit down with Maezen and discuss the different paths this journey has taken us, the pivot in directions we have chosen, how to trust those choices and allow some ease and embrace the gifts. Maezen’s Book on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1 Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/04/07/97-tr...

In this episode we talk about some of the language/words we have learned that have had a profound impact on our journey and more specifically our quest for equality in Liam’s education. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/04/01/96-the-power-of-words-the-words-weve-learned-and-how-they-give-us-power/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a l...

In this episode we talk with Jesse Norell whose daughter’s diagnosis of Down syndrome and a heart condition inspired him to write an album. Using music as a cathartic means to heal and find his way through the unknown, Jesse shares his story in hopes of helping others find their song. Order a CD:  https://jessenorell.com/store For people in the Minneapolis area, Jesse is playing an album release c...

Today we are joined by Dr. Vaish Sarathy to discuss her Non-Linear Education method and to explore the positive affects that assuming intelligence has on all students regardless of presumed abilities. Non-Linear Education:  www.functionalnutritionforkids.com/nonlineareducation Her  TEDx talk "Who decides how smart you are''  where she talked about the value of Assuming Intelligence. Vaish is a  Fu...

In 1969 Willie Dawkins was finishing first grade when his mother received a letter saying he would be transferring into a desegregated school the following year. In this episode we honor his story, his parents who gave him a foundation of love and support he needed to find his way through an unjust world and the advocates who came before us who fought for equality and laid the groundwork for our f...

This week Lori shares thoughts on Liam’s twelfth birthday. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/24/92-liam-turns-twelve-a-mothers-message/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 m...

This week we talk about our personal experience discussing education and inclusion with someone we love who is of the belief that educating our children is asking 'extra' of the school system. We also talk about our new IEP and a story that demonstrates: it is a change of heart that will change the mind that can change the world. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022...

This week we are joined by Paul and Kerry Daugherty to discuss Paul’s book about his daughter, Jillian. It is a book we wish we would have found earlier with the beautiful message of “expecting instead of accepting”. Whether you have a person with Down syndrome in your life or not, this book should be one you read and then share with others. Paul's Book: https://www.amazon.com/Uncomplicated-Life-F...

In this week's episode we discuss perceptions and our experience with Lena Dunham's new film, SHARP STICK, which premiered at the Sundance Film Festival last week and starred Liam Saux. We discuss our concerns with Down syndrome representation, the affects of misperceptions and ultimately the overwhelmingly positive and insightful experience the project was to our entire family. Episode Transcript...

We have the privilege of speaking again with our friend Paul Denniston. In this episode we discuss Paul’s new book where he breaks down his practice of healing. Buy the book: https://www.pauldennistontraining.com/healing-through-yoga Paul’s Website: https://griefyoga.com Episode 22 - Paul’s 30 Minute Yoga Nidra Meditation: https://ifweknewthen.podbean.com/e/22-a-meditation-gift-from-paul-denniston...

This week we have a wonderful conversation with photographer Houston Vandergriff and his mother Katie. We discuss education, advocacy, focusing on the positives and the importance of finding your passion. Houston has traveled the world and his pictures communicate its beauty in the most breath taking ways. Houston’s website: https://www.downsandtowns.com/ Episode Transcript: https://ifweknewthen70...

This week we welcome a New Year and a new school. We discuss how the educational system can make us feel and the importance of making a change when we know it’s right. We address the perceptions of failure and how to move forward after feeling broken. Episode Transcript: https://mcdn.podbean.com/mf/web/qsd29z/86_Making_Changes_And_A_New_Beginning_2bamo1.mp3 Please follow us on Twitter @ifweknewthe...

The full rendition of the If We Knew Then podcast theme song “Chromosome” by Lori Saux and Stephen Saux. Arrangement and mixing by Brady Harris. www. BradyHarrisBand.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/30/85-happy-new-year-the-chromosome-song/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit...

As the year comes to a close, we share a few thoughts on the gifts of the year. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/23/84-happy-everything-to-everyone-a-holiday-message/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...

Today we explore the Self Determination Program in California with Kelly Kulzer-Reyes of Club 21. Eighteen states in the US have similar personalized programs that distribute state funds in a way to insure that people with disabilities have access to appropriate services throughout their lifetime. An extremely informative episode for those who want to have more control of the state services provid...

In this episode we discuss advocacy in action with entrepreneur and advocate John Cronin and his father Mark. Together they have built the company Johns Crazy Socks, with a business model that Fortune 500 companies aspire to achieve. Through highlighting the strengths of others, cultivating dignity and spreading happiness they are making differences in our community and the world. Website: https:/...

If all the world were a skate park, celebrating our abilities and individual expression would be a given. In this episode we talk to Miki Vuckovich from USA Skateboarding about their “Skateboarding For All” initiative. The beauty found in the inclusive skating community is one we strive to cultivate in the classroom and the world. You can join them on December 11th for a Virtual Wrap Party which i...

This week we are grateful to have Melissa Kynoch back with us to tell the story of her son, Bertie’s, heart surgery. It is a very scary experience that about half of all family’s in the Down syndrome community experience. We thank Melissa for opening up to us about the emotions she felt and for sharing all the things she wished she knew then. 12 Step Fellowship: https://www.na.org  Wouldn’t Change...