The Chromodiversity™ Podcast3 Jan 2023

"HOW TO PARENT A CHILD WITH DOWN'S", FEATURING AUTHOR JODI SAMUELS (1/2)

🟢 "YOUR CHILD IS A PERSON FIRST, NOT A MEDICAL CONDITION." In this first of two episodes, Jodi is brutally honest about the challenges she faced...

coming to terms with her daughter’s diagnosis of Down's syndrome ("Trisomy 21": 3 copies of chromosome 21 instead of the usual 2, thought to occur in 1 in 800 infants);
dealing with seemingly endless stream of negative information shortly after birth
and lack of positive information how children with Down's can live happy, increasingly healthy long lives.

You'll also hear about

how Jodi came to accept and embrace her daughter's differences and strengths;
her skepticism of "performative kindness" that can mask the absence of real, meaningful action;
and - facing the reality of social exclusion - how she has come to advocate for what she calls "radical inclusion".

Perhaps the biggest takeaway of this episode is her belief that for parents, the single thing that matters most is to see your child as a person first, not a medical condition.

ABOUT JODI

Jodi Samuels is an author, speaker, serial entrepreneur, world traveler, disability advocate, super mom and wife living in Jerusalem. She challenges mindsets and brings her passion for life to her work as a not-for-profit leader, community activist, disability advocate and entrepreneur.

Her message is simple: Go be unstoppable.

Jodi’s highly regarded memoir is called Chutzpah, Wisdom and Wine: Journey of an Unstoppable Woman.

She is currently working on a new book dedicated to concrete, practical advise for parents with children who have disabilities.

Learn more on www.jodisvoice.com and https://twitter.com/cailysworld.

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Episoder(40)

How to Predict Autism in Extra X & Y Children (2/2)

🔴 "Early symptoms of autism spectrum disorder (ASD) in 1-8 year old children with sex chromosome trisomies (XXX, XXY, XYY), and the predictive value of joint attention*" PART 2.Research over the past...

14 Mar 202327min

Last Words With Gary Glissman

🟢 "I'm a thunderstorm kind of guy" - Gary Glissman, 1950 - 2023.In this podcast you’ll hear two back-to-back episodes with Gary Glissman, recorded October 2022 and re-edited into a single full 45 min...

27 Feb 202343min

How to Predict Autism in Extra X & Y Children (1/2)

🔴 "Early symptoms of autism spectrum disorder (ASD) in 1-8 year old children with sex chromosome trisomies (XXX, XXY, XYY), and the predictive value of joint attention.*" Although not many medical pr...

21 Feb 202327min

"Dazzling Zebras" with Professor Lara Bloom, Pres. & CEO of The Ehlers-Danlos Society

🟢 "Don't ever underestimate what even 5 minutes of just listening and validating someone's experience can lead to (...). It is the best gift (a doctor) can give any patient."Historically seen as a ra...

13 Feb 202331min

Extra X & Y: Exciting Future Trajectories*

🟢 "Great genetic progress", "exciting early neurocognitive interventions", but "grave deficiency in current testing and care models" around the world. Listen to an easy to understand 25 minute summar...

30 Jan 202326min

Peter’s XXY Journey Part 2: A Lifetime of Lessons

🟢 “Had I been diagnosed earlier, how much more could I have accomplished?”In our previous episode “Peter’s XXY Journey Part 1: a 63-Year Diagnostic Odyssey”, Peter Street from Australia compares his ...

24 Jan 202318min

Peter’s XXY Journey Part 1: A 63-Year Diagnostic Odyssey

🟢 “95% of my life has been spent not knowing of my 47,XXY. It was like getting into a boxing ring with as your opponent the invisible man. You never saw where the punches were coming from.”In this ex...

17 Jan 202330min

"Radical Inclusion," Featuring Author Jodi Samuels* (2/2)

🟢 "Kindness Kills..." Despite all the talk about diversity and inclusion, why are children with genetic differences and disabilities still socially excluded? And what do we plan to do about it?In thi...

10 Jan 202329min