If We Knew Then - Down Syndrome Podcast
We are parents of two children and one of them 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 stories, break down stereotypes and help change the narrative by redefining Down syndrome.
Episodes
Thursday Aug 26, 2021
68. The Importance of Special Needs Trusts and a Conservatorship: with Enrique Perez
Thursday Aug 26, 2021
Thursday Aug 26, 2021
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://ifweknewthen701833686.wordpress.com/2021/08/26/68-the-importance-of-conservatorships-and-a-special-needs-trust-with-enrique-perez/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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thursday Aug 19, 2021
67. The Beginner’s Mind: An Interview with Karen Maezen Miller
Thursday Aug 19, 2021
Thursday Aug 19, 2021
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-interview-with-karen-maezen-miller/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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thursday Aug 12, 2021
66. A Conversation About Alzheimer’s with Dr. Brian Skotko
Thursday Aug 12, 2021
Thursday Aug 12, 2021
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://tarheelreader.org
Find A Nutritionist Near You: https://www.eatright.org
Dr. Brian’s Book “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters”: https://www.woodbinehouse.com/product/fasten-seatbelt-crash-course-syndrome-brothers-sisters/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/11/66-a-conversation-about-alzheimers-with-dr-brian-skotko/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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thursday Aug 05, 2021
Thursday Aug 05, 2021
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: https://www.basketsofloveds.com/
Learn at Home: https://www.dsrf.org/programs-&-resources/learn-at-home-5196/
DS Education International education guidelines: https://workdrive.zohoexternal.com/external/8CkAlci1QBB-Jxfap
The LowDOWN Podcast: https://www.dsrf.org/programs-&-resources/the-lowdown-podcast/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/05/65-the-down-syndrome-resource-foundation-part-2-with-liv-meriano-and-danielle-mckinney/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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thursday Jul 29, 2021
64. Changing Our Mind and Approach to Education: Down Syndrome Resource Foundation
Thursday Jul 29, 2021
Thursday Jul 29, 2021
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 Education International education guidelines: https://workdrive.zohoexternal.com/external/8CkAlci1QBB-Jxfap
The LowDOWN Podcast: https://www.dsrf.org/programs-&-resources/the-lowdown-podcast/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/29/64-the-down-syndrome-resource-foundation/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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thursday Jul 22, 2021
63. Just One Of The Guys: Our Interview with Jake Pratt
Thursday Jul 22, 2021
Thursday Jul 22, 2021
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 drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thursday Jul 15, 2021
62. Summer Advocacy: The Challenge Of Letting Go And Taking A Break
Thursday Jul 15, 2021
Thursday Jul 15, 2021
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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thursday Jun 24, 2021
61. Hearts Of Joy International: Our Conversation with Lauren Costabile
Thursday Jun 24, 2021
Thursday Jun 24, 2021
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: https://ifweknewthen701833686.wordpress.com/2021/06/23/61-hearts-of-joy-international-with-lauren-costabile/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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thursday Jun 17, 2021
60. Downright Discrimination - Changing The Laws To Confirm That Every Life Is Equal
Thursday Jun 17, 2021
Thursday Jun 17, 2021
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 community by creating separation and discrimination that follows us through life. We also talk about ways we can support the cause of changing the laws.
Give to the campaign: https://www.crowdjustice.com/case/downrightdiscrimination/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/17/60-downright-discrimination-changing-the-laws-to-confirm-that-every-life-is-equal/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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thursday Jun 10, 2021
59. Education, Adolescence and Advocacy: A Community Conversation with Mary Cole
Thursday Jun 10, 2021
Thursday Jun 10, 2021
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 WCATbook@gmail.com for this book: https://www.wouldntchangeathing.org/product/wcat-book-by-celebrate-t21/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/10/59-education-adolescence-and-advocacy-a-community-conversation-with-mary-cole/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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Friday Jun 04, 2021
Friday Jun 04, 2021
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 You: www.dsc2u.org
T21 Research Society: https://www.t21rs.org
COVID-19 Fact Sheet: https://docs.google.com/document/d/1rTAe4CVSGc8g63LMiTZftecZb-qHJbRdurgpvoRiyBg/edit?usp=sharing
Information for the employer and the employee: https://yournextstar.com/
Always Health Care: https://dsc2u.org/insurers
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/04/811/2/
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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Friday May 28, 2021
57. Revisiting The Story of Chris Nikic: Becoming an IRONMAN
Friday May 28, 2021
Friday May 28, 2021
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://chrisnikic.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/27/57-revisiting-the-story-of-chris-nikic-becoming-an-ironman/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 questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
Thank you for listening!
We are so happy that we can connect with people from all over the world and we appreciate you. If you would be so kind to rate, subscribe and comment where ever you listen to podcasts, it would help us reach an even larger audience.
All the best to you and please stay in touch. Stephen and Lori Saux