Lori Saux public
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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.
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Our son turned 14 last weekend and in this episode we reflect on the joys, challenges and growth we've experienced together on this journey with Liam. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/03/09/168-liams-14th-birthday-sharing-some-insight/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our F…
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This week we revisit our interview with Lynette Louise who is board certified in Neurofeedback. We were very interested in the science of Neurofeedback but early on in the conversation we moved to a serious discussion about the use of the r-word and the reasons why Lynette uses it. This episode may feel a bit intense for many of you and we understa…
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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-righ…
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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 …
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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 answe…
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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 …
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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 l…
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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 thei…
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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 …
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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@DSA…
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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…
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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 awesomene…
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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…
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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 Trans…
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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 f…
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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 w…
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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 Le…
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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 …
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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 …
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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…
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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 …
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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 par…
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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 careg…
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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…
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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…
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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_by…
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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): h…
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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 …
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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…
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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 …
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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.' i…
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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…
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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 …
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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 synd…
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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 Transcr…
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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/2023/02/18/1…
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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:…
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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.…
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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 …
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This is a two part interview with Hollywood casting director Michael Sanford about the importance of inclusion in everyone's life and the responsibility the film and television industry has to uphold a fabric of diversity that is reflective of our global society. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/22/129-michael…
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In this episode we discuss the hope we have for the future and the positive changes we see in the next generation of Down syndrome advocates. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/16/128-the-next-generation-of-advocacy/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifwe…
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We’ve talked about self-care on this podcast and the importance of parents and caregivers to find the time to take care of themselves. We are so grateful that Paul Denniston has once again gifted us, and our listeners, with a guided meditation. This time Paul will guide us through a wonderful Loving Kindness Meditation to help us with the many stru…
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Happy New Year! We hope you are all having a wonderfully relaxing and safe holiday. Today in the spirit of the new year, we revisit an interview we had with Karen Maezen Miller about the practice of The Beginner’s Mind. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/12/31/126-happy-new-year-revisiting-the-practice-of-the-begin…
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In this episode we talk about hope. Losing hope when challenges become overwhelming and finding it again on the other side. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/12/19/125-a-season-of-hope-down-syndrome-advocacy/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPO…
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Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 2 we re-air Caroline’s second appearance on the podcast where she dives a little deeper into the aspects of Early Intervention, what tools parents can use at home and how therapies for children with Down syndrome have changed ov…
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Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 1 we re-air an extremely informative interview with Child Development Specialist, Caroline Bencze-Fernandez where she explains the importance of Early Intervention, how therapies have changed throughout her 30 year career and wh…
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It’s our wedding anniversary and we take a minute to reflect on the past 18 years. Happy Anniversary! Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/07/122-our-anniversary-episode/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeK…
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In this episode we discuss our journey with awareness. We explore how we are learning to cultivate what awareness means in our lives, the way in which awareness has changed over the years and its impact on our advocacy. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/28/121-down-syndrome-awareness-month-2022/2/ Please follow…
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Stephen recorded a solo episode this week, unbeknownst to the family, to express some things that have been on his mind and as a nice surprise to Lori and the kids whenever they come across it. It’s kind of a time capsule episode focused on this present moment and how there is nothing as important as right now. Episode Transcript: https://ifweknewt…
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This week we talked to Dr. Eric Rubenstein and one of his co-researchers, Kaethe Sigelko to discuss self advocacy and the importance of including people with Down syndrome in shaping our community. For everything they ever told you your child would not or could not do - sometimes it takes an example of what is possible to remember who we are and th…
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