If We Knew Then - Down Syndrome Podcast

In this episode we revisit Julie Picot and talk about what the past year has held for her family and their journey. We discuss the milestones reached on her advocacy path with her daughter Elyse and what she wish she would have known earlier.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/18/reaching-our-advocation-milestones-as-parents-with-julie-picot/2/ Please follow u...

In this conversation we sit down with Sader Issa to get an update from the past year after graduating from Dentistry school and what his future holds. Being a man raised by a father with Down syndrome, we also discuss the rewards of advocacy and the awareness and change it creates vs. the negativity that can exist when his story is exposed to the many opinions of social media. Preemptive Love: htt...

November is known as the month of gratitude and there is no one better to talk to about gratitude then our good friend Karen Maezen Miller. Maezen is a Zen Buddhist Priest who consistently gifts us wonderful words of wisdom. Today we discuss the practice of gratitude and how releasing expectations brings us closer to true thankfulness. Maezen’s website: https://karenmaezenmiller.com Episode Transc...

October is Down Syndrome Awareness Month and to end the month we revisited with Melissa Kynoch. Melissa is a past guest who may be best known for her appearance on the BBC Documentary Series ‘Life and Birth’. We discussed her experiences of the past 18 months and what changes she would like to see in society regarding the perceptions of people with Down syndrome. BBC 'Life and Birth: https://www.b...

October is Down Syndrome Awareness Month. We’ve talked about self-care on this podcast and the importance for 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 struggles w...

Cousins, Jack and Caitie, join us to reveal their concept of a Superhero Cinematic Universe where everyone has the courage to unapologetically be themselves. We discuss how their characters will celebrate the hero within and also the importance of inclusion for mental health. Caitie’s brother, Luke, stars as ‘Ultra Luke’ and we talk about their relationship and how she hopes to change the future b...

October is Down Syndrome Awareness Month and in this episode we discuss the true meaning of awareness and advocacy. Many self advocates have blazed a trail for the new generation in our community and we name a few of them so that we know who to look up to when we need encouragement. Frank Stevens’ speech to Congress (YouTube): https://youtu.be/vtS91Jd5mac Episode Transcript: https://ifweknewthen70...

In this final episode of our three-part sibling series, we sit down with Sophia and Jake Pratt’s sister, Amy Hyde, to discuss some of the gifts of having a sibling with Down syndrome. We also explore topics including advocacy, emotions and the R-word. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/22/72-gifts-of-the-journey-a-sibling-conversation-with-amy-hyde/2/ Please fo...

In this second installment of our three-part siblings series, we visit with Dr. Brian Skotko and Sue Levine to talk about the book they wrote entitled, ‘Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters’. This is the first book written exclusively for teens with a brother or sister with Down syndrome and tackles a broad range of their most common issues and concerns. B...

In this first installment of a three part sibling series, we sit down with our 14 year old daughter, Sophia, to talk about her experiences as a sibling of a brother with Down syndrome. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/09/insights-of-a-teenage-sibling-with-sophia-saux/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @...

As we return to school to find a new unknown, we may find ourselves facing familiar challenges and feelings.  In this episode we discuss the importance of a support system that reminds us we are never alone. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/02/69-uncertainties-about-the-return-to-school-youre-not-alone/2/ Please follow us on Twitter @ifweknewthenPOD you can d...

What is the purpose of a Special Needs Trust? What is a Living Will? How do I set up a Conservatorship when my loved one is an adult? How much does all this cost? Attorney and advocate, Enrique Perez, sits down with us to answer all these questions and more on this extremely informative episode for the entire disability community. Perez Law Group: www.perezlawgrp.com   Episode Transcript: https://...

We have the honor again of visiting with Zen Buddhist Priest, Karen Maezen Miller, to discuss the Zen term of a “beginner’s mind” which means an open, innocent and non-judging mind, the mind we bring to everything we do when we are beginners.  Maezen’s website: https://karenmaezenmiller.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/17/66-the-beginners-mind-an-intervie...

In this episode we visit with Dr. Brian Skotko again and talk about the impact of Alzheimer’s in the Down syndrome community and we discuss some pro-active steps that may help to improve the long-term wellness for people with Down syndrome. Down Syndrome Brain Train: https://www.downsyndromebraintrain.com Down Syndrome Clinic: https://www.dsc2u.org Tar Heel Reader Book Collection: https://tarheelr...

This week is part two of our conversation with Liv Meriano and Danielle McKinney, from the Down Syndrome Resource foundation based in British Columbia, Canada. In this episode we continue the discussion on education, supports, inclusion and changing the mindset and approach to supporting students to access the curriculum and reach their potential.  Foundation Website: www. DSRF.org Baskets of Love...

In this week’s episode we are joined by Danielle McKinney and Liv Meriano from the Down Syndrome Resource Foundation to talk about educational tools and strategies parents can use at home and implement in their child’s school IEP. Foundation Website: www. DSRF.org Baskets of Love: https://www.basketsofloveds.com/ Learn at Home: https://www.dsrf.org/programs-&-resources/learn-at-home-5196/ DS E...

In this week’s episode Lori and Stephen visit with Jake Pratt, who with a little support, advocacy and inclusion is living his dreams and changing the narrative. Jake’s UPS Commercial: https://youtu.be/fw97dqK6uiM Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/22/63-just-one-of-the-guys-our-interview-with-jake-pratt/2/ Please follow us on Twitter @ifweknewthenPOD you can d...

In this week’s episode Lori and Stephen discuss the sometimes difficult action of letting Summer just be Summer. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/01/62-summer-advocacy/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 question...

In this week’s episode we speak to Lauren Costabile, the founder of Hearts of Joy International, an organization that provides life-saving heart surgery for individuals with Down syndrome all around the world.  Website: www.heartsofjoyinternational.com Amazon Wishlist: https://www.amazon.com/hz/wishlist/ls/1C1P8TA1C8NBU/ref=nav_wishlist_lists_1?_encoding=UTF8&type=wishlist   Episode Transcript...

Today we interview Máire, Heidi and Liz about their ‘Downright Discrimination’ legal campaign which fights to change the law of the land and create equality for people with disabilities. Presently, in the U.K., it is illegal to abort a fetus after 24 weeks  unless it has Down's syndrome. A baby with Down syndrome can be aborted up to birth. We examine the effect this  inequality has on our communi...

Today we have a ‘Community Conversation’ with advocate Mary Cole discussing her inspiring experience with inclusion.  Mary lives in Cambridge, England and has a 14 year old son with Down syndrome named Ben. Ben’s Nursery: https://www.colourboxmontessori.co.uk/ Online Session On Puberty: https://www.downs-syndrome.org.uk/our-work/services-projects/training/ Email 'Wouldn't Change A Thing' at WCATbo...

In this week’s episode Dr. Brian Skotko shares the most up to date information surrounding the effects of COVID-19 on individuals with Down syndrome. We discuss the importance, safety and science of the vaccine along with tools to help with the process. As we enter back into the world, post-pandemic, the importance of inclusion in society continues along with so much more. Down Syndrome Clinic to...

In this week’s episode we revisit one of our earlier conversations. We had the honor of talking to Chris Nikic and his parents, Nik and Patty last summer. In November Chris became the first person with Down syndrome to complete an IRONMAN. We discuss their 1% philosophy and how people with Down Syndrome can do more than ever expected if given the right tools and time. Chris's Website: https://chri...

This week we talk to Julia Toronczak about her experiences and the lessons she’s learned by growing up with her twin brother Michael, who has Down syndrome. We focus on inclusion and equity in our community and beyond. Beyond The Waves Blog: https://www.beyondthewavesblog.com Beyond The Waves Podcast: https://www.beyondthewavesblog.com/podcast Episode Transcript: https://ifweknewthen701833686.word...

Executive Director of ‘Bridgerton’, Julia Anne Robinson, joins us to discuss a film she directed in 2007 called ‘Coming Down The Mountain’ and starring Tommy Jessop and Nicholas Hoult. We breakdown this film that changed our lives and told some truths about the journey that rarely get talked about. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/12/55-coming-down-the-mounta...