If We Knew Then - 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, Liam, just happens to have Down syndrome. 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.
Episodes
Sunday Sep 10, 2023
156. GiGi’s Playhouse with Nancy Gianni
Sunday Sep 10, 2023
Sunday Sep 10, 2023
Today, we are joined by Nancy Gianni to talk about her foundation, GiGi’s Playhouse, which provides FREE, life-changing therapeutic, educational, and career training programs for 30,000+ individuals of all ages, everyday. GiGi’s Playhouse empowers families by maximizing opportunities for daily achievement and lasting acceptance and in turn, showing the world what individuals with Down syndrome are truly capable of achieving as students, co-workers, volunteers, friends, and valued members of the community.
GiGi’s Playhouse: https://gigisplayhouse.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/09/156-gigis-playhouse-with-nancy-gianni/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.
Sunday Sep 03, 2023
155. Using Your IEP to Make the Most of Middle School
Sunday Sep 03, 2023
Sunday Sep 03, 2023
In this episode we give an update on our son Liam, a 13-year old in middle school, and discuss how far he has come, what supports have helped us navigate his transitions into middle school and how we are helping him find the independence every teen wants to cultivate.
Citizen's Of The World Middle School: https://www.cwcsilverlake.org
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/02/155-using-your-iep-to-make-the-most-of-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.
Sunday Aug 27, 2023
154. Revisiting Our Interview with Megyn Price
Sunday Aug 27, 2023
Sunday Aug 27, 2023
This is our conversation with actress Megyn Price to discuss inclusion, the importance of encouraging others to express their uniqueness and how her Uncle, who had Down syndrome, affected her family in a positive way.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/08/27/154-revisiting-our-interview-with-megyn-price/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.
Sunday Aug 20, 2023
Sunday Aug 20, 2023
This week we revisit the story of Jad Issa, a man with Down Syndrome who is a husband, father and respected citizen. At diagnosis, parents of children with Down syndrome are immediately told all the things their child won’t do. Jad’s life shows us that these preconceptions aren’t only untrue but the very belief in them often cause limitations. As with every child, all things are possible. We hope that this conversation with Jad’s son Sader, a dentist in Damascus, brings comfort to parents to believe in what may be thought of as impossible.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/08/20/jad-issa/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.
Sunday Aug 13, 2023
Sunday Aug 13, 2023
This episode is the entire conversation we had with Matt MacNeil and Ed Casagrande from the Canadian Down Syndrome Society concerning their collaboration with Google AI to create a database that can help train Google’s speech recognition technology to better understand people with Down syndrome.
Donate your voice at: https://projectunderstood.ca
Learn more about the CDSS: https://cdss.ca
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/08/13/152-revisiting-the-canadian-down-syndromes-project-understood-training-speech-technology/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.
Sunday Aug 06, 2023
Sunday Aug 06, 2023
This week we are joined by Abby Brandon-Livits and Misty Adams from the National Down Syndrome Society to talk about the 2023 NYC Buddy Walk and it’s wonderful Times Square Video presentation that redefines the image of the Down syndrome community.
NYC Buddy Walk website: https://give.ndss.org/event/2023-new-york-city-buddy-walk-r/e478474
National Down Syndrome Society: www.NDSS.org
FaceBook: https://www.facebook.com/NDSS1979
Instagram: https://www.instagram.com/ndssorg/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/08/06/151-nyc-buddy-walk/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.
Sunday Jul 30, 2023
Sunday Jul 30, 2023
Today we're joined again by Dr. Eric Rubenstein, an Assistant Professor of Epidemiology at Boston University School of Public Health. Eric is a researcher, a volunteer for the Special Olympics and a lifelong advocate of individuals with Down syndrome. This conversation is a round table discussion of change and evolution, progress and insights that we feel so fortunate to be able to share with each of you today.
Eric’s Website: https://sites.bu.edu/rubenstein
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/30/150-ableism/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.
Sunday Jul 23, 2023
149. Down Syndrome and Alzheimer’s Research with Dr. Tom Mahan
Sunday Jul 23, 2023
Sunday Jul 23, 2023
Today we're joined by Dr. Tom Mahan, who specializes in Alzheimer’s research with a focus on individuals with Down syndrome. Tom is a father of three boys and his oldest son, Teddy, has down syndrome which is what sparked him into taking his already existing research of Alzheimer’s and guiding it to a focus on individuals with Down syndrome.
ABC-DS: https://www.nia.nih.gov/research/abc-ds
NIH INCLUDE Project: https://www.nih.gov/include-project
DSDN Facebook Page: https://www.facebook.com/DownSyndromeDiagnosisNetwork
DSDN Website: https://www.dsdiagnosisnetwork.org/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/23/149-alzheimers/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.
Sunday Jul 16, 2023
148. RODS Heroes - Our Interview with Brady Murray
Sunday Jul 16, 2023
Sunday Jul 16, 2023
This week we visit with Brady Murray of RODS Heroes, an organization meant to inspire families to answer the call to adopt children born with Down syndrome and other special abilities. Brady and his wife Andrea have seven children and it was their adopted son Cooper who brought our attention to the Murray’s advocacy though his appearances throwing out the first pitch a Major League Baseball games. In this conversation we also talk about Brady’s Special Needs Life Planning venture, Special Abilities Network and discuss his eldest son, Nash and the experience of receiving Nash’s Down syndrome diagnosis in 2007.
RODS Heroes: https://rods.org
Facebook Page: https://www.facebook.com/rodsheroes
Instagram: https://www.instagram.com/rodsheroes/
Special Abilities Network: https://specialabilitiesnetwork.com/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/16/148-rods-heros/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.
Sunday Jul 09, 2023
Sunday Jul 09, 2023
In this episode, we speak with Johan Lindborg, founder of t21 Coffee. We had a beautiful conversation discussing his journey with his 12 year old son Cooper and how he has transformed from the doubts he had and the darkness he felt when receiving the Down syndrome diagnosis. It is an open and honest discussion that touches on fears to which any parent can relate. In the face of those fears, he created T21 Coffee, which both employs individuals with Down syndrome and donates a portion of every bag sold to Down syndrome research.
T21 Coffee: https://www.t21coffee.com
Facebook Page: https://www.facebook.com/t21coffee
Instagram: https://www.instagram.com/t21coffee1/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/09/147-t21-coffee/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.
Saturday Jul 01, 2023
146. Down Syndrome Diagnosis Network (DSDN) with Ben Hughes
Saturday Jul 01, 2023
Saturday Jul 01, 2023
Today we are joined by Ben Hughs to discuss the Down Syndrome Diagnosis Network (DSDN) and how it empowers new parents with online supports, information, and resources. We also talk about the in person “Rockin’ Retreats” that offer our community the connection and respite necessary, but not always utilized, on the journey for every parent and caregiver.
DSDN Facebook Page: https://www.facebook.com/DownSyndromeDiagnosisNetwork
DSDN Website: https://www.dsdiagnosisnetwork.org/
DSDN Retreats: https://www.dsdiagnosisnetwork.org/dsdn-retreats
Ben’s Email: ben@dsdiagnosisnetwork.org
Governor Pritzker’s Commencement Speech: https://youtu.be/NhuIU_kXJDE
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/01/146-dsdn/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.
Monday Jun 26, 2023
Monday Jun 26, 2023
Ted Green is a documentarian whose latest film, ‘The Best We’ve Got: The Carl Erskine Story’, will be airing on PBS SoCal July 4th. Ted’s film is an in-depth look at Carl Erskine, a Dodgers pitcher whose son Jimmie was born with Down syndrome 63 years ago, a time in our country’s history when segregation plagued humanity. Carl and Betty, when faced with the inevitable institutionalization of their son, which was the option that was customarily given by the medical community to protect the integrity of their family unit, made the choice to take their child home and raise him. A decision for the time that took great courage, taking some of the first steps to change the narrative of Down syndrome.
Stream The Film: https://watch.eventive.org/heartlandfilm
Website: https://www.carlerskinefilm.com
EPIC Website: http://soindiana.org/EPIC
EPIC Promo (3:30): https://vimeo.com/710911325/b293dfbb38
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/06/26/145-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.
Thank you for listening!
We are so happy that we can connect with people from all over the world and we appreciate you. If you would be so kind to rate, subscribe and comment where ever you listen to podcasts, it would help us reach an even larger audience.
All the best to you and please stay in touch. Stephen and Lori Saux