If We Knew Then - Down Syndrome Advocacy and Parenting

This week Liam turns 13. We recorded this episode on Valentine's Day with is fitting because love is the driving force of this family. Becoming a teenager is a milestone we have been looking forward to and we are thankful for all the ups and downs that have gotten us here. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/18/133-liam-turns-13-let-the-teenage-years-begin/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.

For Black History Month we revisit a phenomenal episode we had with Willie Dawkins. We honor his story and his parents who gave him the 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 Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/10/132-black-history-month-revisiting-our-interview-with-willie-dawkins/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 talk today about how we learn to do things differently, the way we learn from our past, and how the seemingly smallest memories can hold so much in them, like the little lessons along the way. We also explore the need to accept when it’s easy, and how that can be a challenge in itself. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/03/131-the-things-we-learn/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 is the second half of a two part interview with casting director Michael Sanford about the work being done to make media more inclusive and diverse. We first met Michael when he cast our son, Liam, in the Lena Dunham movie SHARP STICK. Michael had seen Liam in a film made for the Disability Film Challenge where people with disabilities have a space to tell their own stories in the hopes that more spaces like that will be made in Hollywood. Disability Film Challenge: https://disabilityfilmchallenge.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/29/michael-sanford-an-advocate-for-diverse-casting-in-hollywood-part-2/2/ 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 is a two part interview with Hollywood casting director Michael Sanford about the importance of inclusion in everyone's life and the responsibility the film and television industry has to uphold a fabric of diversity that is reflective of our global society. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/22/129-michael-sanford-an-advocate-for-diverse-casting-in-hollywood/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 hope we have for the future and the positive changes we see in the next generation of Down syndrome advocates. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/16/128-the-next-generation-of-advocacy/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’ve talked about self-care on this podcast and the importance of parents and caregivers to find the time to take care of themselves. We are so grateful that Paul Denniston has once again gifted us, and our listeners, with a guided meditation. This time Paul will guide us through a wonderful Loving Kindness Meditation to help us with the many struggles we can face when we so often put others before ourselves. 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/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/07/127-revisiting-a-loving-kindness-meditation-with-paul-denniston/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 New Year! We hope you are all having a wonderfully relaxing and safe holiday. Today in the spirit of the new year, we revisit an interview we had with Karen Maezen Miller about the practice of The Beginner’s Mind. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/12/31/126-happy-new-year-revisiting-the-practice-of-the-beginners-mind-with-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 hope. Losing hope when challenges become overwhelming and finding it again on the other side.   Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/12/19/125-a-season-of-hope-down-syndrome-advocacy/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.

Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 2 we re-air Caroline’s second appearance on the podcast where she dives a little deeper into the aspects of Early Intervention, what tools parents can use at home and how therapies for children with Down syndrome have changed over the years. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/27/124-revisiting-with-caroline-bencze-fernandez-part-2-at-home-tools-and-supports/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.

Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 1 we re-air an extremely informative interview with Child Development Specialist, Caroline Bencze-Fernandez where she explains the importance of Early Intervention, how therapies have changed throughout her 30 year career and what parents should know. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/20/123-revisiting-with-caroline-bencze-fernandez-part-1-early-intervention/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’s our wedding anniversary and we take a minute to reflect on the past 18 years. Happy Anniversary! Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/07/122-our-anniversary-episode/ 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 our journey with awareness. We explore how we are learning to cultivate what awareness means in our lives, the way in which awareness has changed over the years and its impact on our advocacy. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/28/121-down-syndrome-awareness-month-2022/2/ 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.

Stephen recorded a solo episode this week, unbeknownst to the family, to express some things that have been on his mind and as a nice surprise to Lori and the kids whenever they come across it. It’s kind of a time capsule episode focused on this present moment and how there is nothing as important as right now. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/21/120-the-secret-episode-living-for-the-moments/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 talked to Dr. Eric Rubenstein and one of his co-researchers, Kaethe Sigelko to discuss self advocacy and the importance of including people with Down syndrome in shaping our community. For everything they ever told you your child would not or could not do - sometimes it takes an example of what is possible to remember who we are and that every child’s life is one of possibility. Eric’s Website: https://sites.bu.edu/rubenstein Contact Kaethe: [email protected] Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/14/119-walking-the-walk-breaking-down-stereotypes-with-dr-eric-rubenstein-and-kaethe-sigelko/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 week's episode we are joined by Zen Buddhist Priest, Maezen Miller. We discuss having patience and letting go in order for it to all unfold. Believing and having patience can enable our children to be who they are, go where they go and do what they do, to become exactly who they are. Karen Maezen Miller: https://karenmaezenmiller.com Maezen’s Book on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1 Steve & Michel Gleason Foundation: https://teamgleason.org Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/30/117-patience-with-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.

Mother Asana merges the focus of Ally’s art and expression with Gina’s yoga practice and meditation insights. Gina is a devotee to her Spiritual Practice for over 20 years influenced by many practitioners & styles. Her trainings landed her teaching Slow Flow Yoga, YOGA for Cancer & Mindfulness for the Special Parent. Creating Connection is the cornerstone to her parenting & personal style. In her journey as a ‘warrior mom,’ Meditation & Asana has been instrumental in understanding & healing while raising a family with a special needs. Website: https://www.motherasana.com/ Pre-Order the book: https://www.motherasana.com/shop/the-art-and-voice-of-autism Instagram: @mother_asana FaceBook: @motherasana Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/23/mother-asana-the-art-and-voice-of-autism-with-gina-uricchio/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.

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. Website: https://functionalnutritionforkids.com Constipation Tool Kit: https://functionalnutritionforkids.com/constipationtoolkit Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/08/115-functional-nutrition-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.

We have learned a lot, some harsh realities and beautiful truths. We now move forward with eyes wide open, ready to learn from where we have been, into the unknown of middle school. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/02/114-liam-starts-middle-school/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.

The discussion on Self Determination in episode 83,  developed into an examination of the term “Self Determination” and what it means in the scope of determining ones self and ones path.  In this episode with Ellen Coulston we discuss Self Determination as a tool to promote independence, confidence and participation by student led IEP planning, making that student a part of the dialogue instead of a 3rd person participant in a conversation about their life goals. I’m Determined: https://www.imdetermined.org LifeCourse: https://www.lifecoursetools.com/ Ellen’s Podcast: ieproadtofreedom.com Ellen on Twitter: https://twitter.com/EllenRita220 CA Transition Alliance: http://www.catransitionalliance.org/catransitionalliance.aspx Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/08/18/113-student-led-ieps-to-determine-ones-own-path-of-self-advocacy-with-ellen-coulston/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 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.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 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/vm0d2tjtqs1r5ss/NEVER%2C%20is%20Not%20in%20My%20Vocabulary.pdf?dl=0 Caden’s College Power Point Presentation: https://www.dropbox.com/scl/fi/7jo7jh80mjs9ir7gmko77/Informative-Speech-Bill-of-Rights.pptx?dl=0&rlkey=trfd9vsx23xcenee826r3jv13 Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/08/05/111-kicking-down-barriers-our-conversation-with-college-kicker-caden-cox/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 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/ 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 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 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-Fathers-Exceptional-Daughter/dp/0062359959 Our First Episode with the Daugherty’s (Episode 90):  https://ifweknewthen.podbean.com/e/90-an-uncomplicated-life-a-father-s-memoir-of-his-exceptional-daughter-with-paul-and-kerry-daugherty/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/22/109-parenting-is-parenting-a-conversation-with-paul-and-kerry-daugherty/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 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.

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.

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 Transcript: https://ifweknewthen701833686.wordpress.com/2022/03/11/93-desegregation-and-the-foundational-ingredients-in-the-fight-for-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.

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 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 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/2022/02/17/91-valentines-week-changing-hearts-minds-about-education/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 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-Fathers-Exceptional-Daughter/dp/0062359959 Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/10/90-an-uncomplicated-life-a-fathers-memoir-of-his-exceptional-daughter-with-paul-and-kerry-daugherty/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 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: https://ifweknewthen701833686.wordpress.com/2022/02/03/89-inclusion-at-the-sundance-film-festival/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 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/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/01/27/88-healing-through-yoga-transform-loss-into-empowerment-with-paul-denniston/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 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://ifweknewthen701833686.wordpress.com/2022/01/20/87-downs-towns-our-conversation-with-houston-vandergriff/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 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 @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.

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 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 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 provided for their loved ones. Club 21: https://clubtwentyone.org Disability Voices United: https://disabilityvoicesunited.org Independent Facilitator groups: https://www.guidelightgroup.org/about-us https://www.neuronav.org/ https://www.allycs.org/  DDS website on Self Determination https://www.dds.ca.gov/initiatives/sdp/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/16/83-the-self-determination-learning-circle-at-club-21-with-kelly-kulzer-reyes/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 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 A Thing - https://www.wouldntchangeathing.org  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/25/80-berties-heart-surgery-talking-about-the-scary-stuff-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 revisit Julie Picot and talk about what the past year has held for her family and their journey. We discuss the milestones reached on her advocacy path with her daughter Elyse and what she wish she would have known earlier.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/18/reaching-our-advocation-milestones-as-parents-with-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.