If We Knew Then - Down Syndrome Podcast

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...

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...

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 T...

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: htt...

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...

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 INC...

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 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 cre...

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...

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...

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...

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://i...

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/Centr...

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 websit...

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 D...

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.wordpre...

This episode marks the beginning of the Easterseals Disability Film Challenge’s Awareness Campaign. It’s our 9th film and it’s taken nine years to realize the Awareness Campaign strives to tell our stories to as many people as possible and by doing that, changing the path and narrative of individuals with disabilities. Our film, 'Yes. No. Maybe.' is a teenage love story. We hope you will watch and...

In this episode we celebrate Citizens of the World Charter Schools whose approach to inclusion was a life changing discovery for our family.  We sit down with  Dr. Maureen and Mrs. Aries, Co-principals of CWC, and discuss the importance of inclusion, its impact and why we as parents, if it is what is best for our student, should insist on our child’s right to an inclusive classroom. CWC Website: w...

Happy World Down Syndrome Day 2023! In celebration of our community, we are sharing a discussion we had this month with Dr. Eric Rubenstein and his co-researcher team. Dr. Eric is an Assistant Professor in the Department of Epidemiology at Boston University and his research team is comprised of six adults with Down syndrome who engage the research process to create their own project. The team is c...

Dr. Mona is an attending physician in the Department of General Pediatrics at Children’s Hospital Los Angeles and an Associate Professor in the Department of Pediatrics at the Keck School of Medicine of the University of Southern California. She sat down with us to challenge the many medical myths and stereotypes surrounding children with Down syndrome. Health Supervision Guidelines: https://www.h...

Dr. Jill Lasky discusses the importance of Pediatric Dentistry, how to introduce dental care and specifics pertaining to the Down Syndrome community. We also discuss methods and tools for parents who want to support their children in making good dental health habits. Lasky Pediatric Dental Group: https://www.laskypediatricdental.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2...

This week Liam turns 13. We recorded this episode on Valentine's Day with is fitting because love is the driving force of this family. Becoming a teenager is a milestone we have been looking forward to and we are thankful for all the ups and downs that have gotten us here. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/18/133-liam-turns-13-let-the-teenage-years-begin/2/ Pl...

For Black History Month we revisit a phenomenal episode we had with Willie Dawkins. We honor his story and his parents who gave him the foundation of love and support he needed to find his way through an unjust world and the advocates who came before us who fought for equality and laid the groundwork for our fight for inclusion. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/...

We talk today about how we learn to do things differently, the way we learn from our past, and how the seemingly smallest memories can hold so much in them, like the little lessons along the way. We also explore the need to accept when it’s easy, and how that can be a challenge in itself. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/03/131-the-things-we-learn/2/ Please f...

This is the second half of a two part interview with casting director Michael Sanford about the work being done to make media more inclusive and diverse. We first met Michael when he cast our son, Liam, in the Lena Dunham movie SHARP STICK. Michael had seen Liam in a film made for the Disability Film Challenge where people with disabilities have a space to tell their own stories in the hopes that...