If We Knew Then - A Down Syndrome Podcast

If We Knew Then - A Down Syndrome Podcast

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. WEBSITE: https://ifweknewthen.com

Episodes

August 12, 2022 54 min

In this conversation we sit down with Dr. Beverly Celotta. Bev is a retired Licensed Child Psychologist who shares her knowledge about how to set all children up for success.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/08/11/112-dr-beverly-celotta/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...

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In this episode we sit down with Caden Cox and his parents, Mari and Kevin, to talk about their history making and game changing journey to inclusion. Caden is the first person with Down syndrome to play as well as score in a NCAA/NJCCA College football game.

Caden’s JakeMax Collection: https://www.jakemax.com/collections/cadens-collection

'NEVER, is not in My Vocabulary' College Paper: https://www.dropbox.com/s/vm0d2tjtqs1...

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This week we have a wonderful conversation with Dr. Eric Rubenstein, an Assistant Professor in the Department of Epidemiology at Boston University. We discuss equality and inclusion in research as it pertains to Down syndrome. 

Eric’s Website: https://sites.bu.edu/rubenstein/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/29/110-the-future-of-research-and-the-hope-on-the-horizon-with-eric-rubenstein/2/

Plea...

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Today we have an open and candid conversation with the author of ‘An Uncomplicated Life’ Paul Daugherty and his wife Kerry about their approach to early education, college, dating, sex, marriage and lots of other things we are told our kids won’t do. ‘An Uncomplicated Life’ 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 yo...

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In this episode we find a way to inclusion through empathy. Our conversation with Micah Kessel was an empowering and insightful discussion offering ways to focus our advocacy and to come from a more nurturing and loving place. Micah is the creator of Empathable and Playground of Empathy. These organizations work nationally with world-renowned academics to bridge science, technology, and art to amplify the intersectional experiences...

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Liam graduated from elementary school, on curriculum, in an inclusive classroom with his peers. We reflect on the moments that led to his accomplishment and what we could have done better if we knew then.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/07/107-graduating-elementary-school-a-culmination-of-what-we-learned/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Faceboo...

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It was so nice spending some time with founder Ila Halby to talk about the Zeno Mountain Farm Camps, their feature film “Best Summer Ever” and the power of representation in film. Whether used as a noun or a verb, Zeno stands for inclusion.

Zeno’s Website: https://zenomountainfarm.org

Zeno’s IG: https://www.instagram.com/zenomountainfarm/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/06/23/106-zeno-mountain-f...

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In this episode we are joined by Rob Snow, the founder of The Improvaneer Method. The Improvaneer Method uses improvisation to build skills that will greatly improve social, workplace and lifetime opportunities in those with developmental disabilities. With both in-person and online classes, it is widely assessable and has been a real game changer for many people in our community. We also talk briefly about Rob’s book, ‘What I Shou...

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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 she learned from working with Liam a...

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*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, but we highly recommend listening a...

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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 toward children with cognitive and devel...

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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 syndrome community. We talk about educ...

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May 13, 2022 36 min

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 https://www.IfWeKnewThen.com ...

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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 questions and comments. You ...

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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 Previous Entry's: https://ttm...

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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-trusting-your-journey-and-embraci...

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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 line on our Facebook page @i...

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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 concert on Friday, April 8, 2022. Tic...

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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  Functional Nutrition Practit...

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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 fight for inclusion.

Episode Transcr...

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