If We Knew Then - Down Syndrome Podcast

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: k.sigelko1415@gmail.com 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.  

Documentarian, Ted Green visits with us to discuss his most recent film “The Best We’ve Got: The Carl Erskine Story”.  As a teammate and close friend of Jackie Robinson and then as the father of a person with Down syndrome, Carl played a pioneering role in two human-rights movements. Our guest, Ted Green switched to filmmaking in 2010 after 20 years as a newspaper journalist, and since then he has produced and directed eight documentaries. Other subjects include Holocaust survivor Eva Kor, and Indianapolis’ Crispus Attucks High School. Website: https://www.carlerskinefilm.com EPIC Website: http://soindiana.org/EPIC EPIC Promo (3:30): https://vimeo.com/710911325/b293dfbb38 “The Fan Connection”: https://www.fanconnectionmovie.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/06/118-the-carl-erskine-story-with-ted-green/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.