If We Knew Then - Down Syndrome Podcast

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 of the underserved at your place of business or learning. Empathable: https://empathable.com Playground of Empathy: https://empathable.com/playground/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/14/108-playground-of-empathy-micah-kessel/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.

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 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 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-farm-telling-stories-of-diversity-and-inclusion-ila-halby/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 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 Should Have Said’ and his ‘Minimize The Mountain’ talk.  Improvaneer Method:  https://www.theimprovaneermethod.com/ Rob’s Book ‘What I Should Have Said’: https://www.weneedasign.net/the-book Minimize The Mountain (YouTube): https://youtu.be/MtZZ_7xZhT0 Stand Up for Downs: https://www.standupfordowns.org Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/06/17/105-the-improvaneer-method-using-improvisation-to-build-skills-and-change-perceptions-an-interview-with-rob-snow/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 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 and her future family plans. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/06/08/104-lena-dunham-a-champion-for-diversity-and-inclusion/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.

*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 all the way through to the end. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/06/03/103-finding-our-way-through-a-tough-conversation-lynette-louise/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 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 developmental disabilities. DSC2U: https://www.dsc2u.org 5-min video about DSC2U: https://youtu.be/u-DlSQanj54 Trisomy 21 Research Society International Conference (June 2022): http://www.t21rs.org More about Dr. Skotko: https://www.massgeneral.org/doctors/19069/brian-skotko Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/05/26/102-dsc2u-preventative-and-proactive-means-to-staying-healthy/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.

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 education frustrations, what the Tesori's are doing to make a change and how we can harness our anger into a motivator to make a change. The Tesori Foundation: https://tesorifamilyfoundation.org Robb Scott’s Viral Video: https://www.youtube.com/watch?v=m8sPT6-iGBE Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/05/19/101-learning-to-take-things-step-by-step-with-michelle-paul-tesori/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.

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 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’ 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 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 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://ttmaba.com/dfc The Festival’s Website: https://disabilityfilmchallenge.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/04/14/98-the-easterseals-disability-film-challenge-and-the-importance-of-everyones-story-being-told/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 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-embracing-the-pivot-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.

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 @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 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. Tickets are here: https://theparkwaytheater.com/all-events/jesse-norell-and-friends Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/03/24/95-aorta-borealis-telling-his-story-through-music-with-jesse-norell/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 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 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. She comes to Functional Nutrition with a mission to reframe health, cognition and optimal function for children with disabilities.  Her perspective is shaped by her non-speaking 14 year old son, who is (in his words) an Autist with Down Syndrome - a published poet, writer, and budding advocate. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/03/18/94-assuming-intelligence-changing-the-narrative-of-down-syndrome-with-dr-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.