If We Knew Then - Down Syndrome Podcast

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

February 18, 2024 63 mins

This week we have the wonderful Julie Picot back on the show to discuss her experience transitioning her daughter, Elyse from TK to Kindergarten. We also touch upon how very often parents feel shame when guiding their school aged children out of diapers.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/02/17/166-finding-the-right-supports-without-shame-with-julie-picot/2/

Please follow us on Twitter @ifweknewthe...

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Dr. Ilona Kleiner has been both our children's pediatrician since birth. Today we discuss with her the importance of always seeing the whole child and how her care for Liam really isn't any different than that of a typical child.

Dr. Kleiner's Bio: https://www.pamgdocs.com/copy-of-about-our-doctors-1

Recommend books:

What’s Going on Down There?  by Karen Gravelle

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In this episode, we discuss Charlotte Fien’s path to advocacy, breaking down the barriers of education, the love story between her and her husband Riley, and how her infectious can-do attitude has influenced him to break down barriers in his own life. It is the story of two humans creating the life they want to live and never taking no for an answer.

Charlotte & Riley Forever FB Page: https://www.facebook.com/autismintune 

A Wo...

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Happy Martin Luther King Day! We start this new year by revisiting with our friend, 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...

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Follow Stephen while he unexpectedly flies back to Louisiana due to his mother’s illness. He reflects on the importance of experiencing all of life’s moments and truly being present.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/22/162-living-in-the-moment/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD o...

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October is Down Syndrome Awareness Month and in this episode, Stephen and Lori discuss another angle in your next Awareness Campaign. Some of the most important people to make aware of our community's potential are educational professionals. We as parents can advocate but it just might be our children who change the minds of those in charge of their education.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/...

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Joining us today is Liam Starkey from The Inclusive Hub. The Hub was started in 2016 helping small groups of Autistic children around Liverpool, England take part in non-contact boxing and fitness sessions. It has now expanded and continues to empower people of all ages and abilities through exercise. 

Website: www.theinclusivehub.co.uk

Order a tee shirt: transalpino.co.uk

Twitter: https://twitter.com/liamstarkey84

Instagram: https...

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Today we are joined by Sandra Baker from the Down Syndrome Association of Los Angeles (DSALA) and Dr. Brian Skotko from the Down Syndrome Clinic To You (DSC2U) to discuss their collaboration in supporting Spanish-Speaking families that have a member with Down syndrome.  

DSC2U: www.DSC2U.org

DSALA: www.DSALA.org

DSALA Contact:

(818) 786-0001

info@DSALA.org

NOTES FROM DR. SKOTKO:

  • We have...
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September 24, 2023 65 mins

This week we were joined by Katelyn Quintero from Best Buddies International, which is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, and inclusive living for individuals with intellectual and developmental disabilities. 

Website: www.bestbuddies.org

Champion of the Year: www.bestbuddiescha...

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September 17, 2023 62 mins

We had such fun talking to Liz Plachta, the founder of Ruby’s Rainbow!  Ruby’s Rainbow grants scholarships to students with Down syndrome who are seeking post-secondary education, including enrichment or vocational classes, and helping them achieve their dreams of higher education while spreading awareness of their capabilities and general awesomeness.

Ruby’s Rainbow: www.rubysrainbow.org

WDSD Pledge: www321pledge.org

Facebook Page...

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September 10, 2023 75 mins

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 stud...

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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-...

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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 @ifw...

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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 s...

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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://ifweknewthen7018...

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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

Insta...

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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: http...

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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/in...

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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 ...

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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...

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