If We Knew Then - Down Syndrome Podcast

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.

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.

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.

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.

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.

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.

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.

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.

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.

Today we are joined by Vaish and Sid Sarathy. Dr. Vaish Sarathy 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. Sid, who has the diagnoses of autism, Down syndrome, and non-speaking, is, among other things, a poet with two published books of poetry. In this episode, we discuss their journey with communication, breaking down barriers of misperception and limiting thoughts to support Sid in freeing his voice and the responsibility that freedom brings with it. Full Interview Video (01:33:17): https://youtu.be/DkE4ZkYdSjM Sid’s Poetry Books: https://push-press.blogspot.com Sid’s Instagram: https://www.instagram.com/downlikesid/ Vaish’s Website: https://functionalnutritionforkids.com Vaish’s Podcast Funtional Nutrition & Learning For Kids: https://podcasts.apple.com/us/podcast/functional-nutrition-and-learning-for-kids/id1478145610 Rapid Prompting Method (RPM): https://www.halo-soma.org Chris Martin’s Website: www.UnrestrictedInterest.com Connections Academy: https://www.connectionsacademy.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/06/19/144/2/ 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 speak again to Zen Buddhist Priest, Karen Maezen Miller and discuss the art of letting go, letting the answers be in the moment, and finding surrender in acceptance of that moment. Karen Maezen Miller Website: https://karenmaezenmiller.com Maezen’s books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1 Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/06/09/143-letting-go/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, Julie Picot shares the experience of her latest series of IEP’s meant to usher her daughter Elyse into the Los Angeles Public School system. LAUSD Complaint Response Unit Website: https://achieve.lausd.net/Page/3581 Email: EquityCompliance@lausd.net Phone: (213) 241-7682  TTY: (213) 241-2511 Directions To File A Due Process (PDF): https://achieve.lausd.net/cms/lib/CA01000043/Centricity/domain/168/froms/REF%201410.9%20Attachment%20A%20Directions%20to%20File%20for%20Due%20Process.pdf Alternate Dispute Resolution (PDF): https://achieve.lausd.net/cms/lib/CA01000043/Centricity/Domain/1220/ADR_Brochure_English_Spanish_6.22.pdf LAUSD Uniform Complaint Procedures Form (PDF): https://achieve.lausd.net/cms/lib/CA01000043/Centricity/Domain/383/03%20BUL-5159.11%20UCP%20Complaint%20Form_English.pdf Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/06/04/142/2/ 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 speak with Araon and Julie, parents of 5 year old Elyse, about the lessons learned, the changes seen and the realizations made from diagnosis till now. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/05/28/141-julie-and-aaron-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.

In this episode we reconnect with Melissa Kynoch as her son Bertie begins primary school in Birmingham, England. You may remember that Melissa and Bertie were featured on the popular BBC Documentary Series ‘Life and Birth’. Among many things, we discuss the impact inclusion has made in Bertie’s life and the family's journey. Wouldn’t Change A Thing - https://www.wouldntchangeathing.org Bookworms Day Care: https://www.facebook.com/profile.php?id=100086453783217 Up and Downs Support Group: https://www.facebook.com/upanddownswm BBC 'Life and Birth’: https://www.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4  12 Step Fellowship: https://www.na.org  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/05/06/140-keeping-up-with-bertie/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 have a wonderful conversation with Indira Cruz discussing the impact a non-inclusive environment had on her brother, now 50. By looking back at our past we learn from the injustices and see the consequences they had on generations of people with disabilities. Some of those lessons can be hard. This is one of them.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/04/23/139-indira-cruz/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.