If We Knew Then - Down Syndrome Podcast

This week we welcome a New Year and a new school. We discuss how the educational system can make us feel and the importance of making a change when we know it’s right. We address the perceptions of failure and how to move forward after feeling broken. Episode Transcript: https://mcdn.podbean.com/mf/web/qsd29z/86_Making_Changes_And_A_New_Beginning_2bamo1.mp3 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.

The full rendition of the If We Knew Then podcast theme song “Chromosome” by Lori Saux and Stephen Saux. Arrangement and mixing by Brady Harris. www.BradyHarrisBand.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/30/85-happy-new-year-the-chromosome-song/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.

As the year comes to a close, we share a few thoughts on the gifts of the year. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/23/84-happy-everything-to-everyone-a-holiday-message/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.

Today we explore the Self Determination Program in California with Kelly Kulzer-Reyes of Club 21. Eighteen states in the US have similar personalized programs that distribute state funds in a way to insure that people with disabilities have access to appropriate services throughout their lifetime. An extremely informative episode for those who want to have more control of the state services provided for their loved ones. Club 21: https://clubtwentyone.org Disability Voices United: https://disabilityvoicesunited.org Independent Facilitator groups: https://www.guidelightgroup.org/about-us https://www.neuronav.org/ https://www.allycs.org/  DDS website on Self Determination https://www.dds.ca.gov/initiatives/sdp/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/16/83-the-self-determination-learning-circle-at-club-21-with-kelly-kulzer-reyes/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.

In this episode we discuss advocacy in action with entrepreneur and advocate John Cronin and his father Mark. Together they have built the company Johns Crazy Socks, with a business model that Fortune 500 companies aspire to achieve. Through highlighting the strengths of others, cultivating dignity and spreading happiness they are making differences in our community and the world. Website: https://johnscrazysocks.com/ Dance Party link: Online Dance Party with John (johnscrazysocks.com) Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/09/82-johns-crazy-socks-spreading-happiness-with-john-mark-cronin/2/ TEDx Talk on How People with Differing Abilities are Waiting to Help Us: John and Mark X. Cronin Give TEDx Talk on the Power of People with Dif (johnscrazysocks.com) John Donates $100,000 to the Special Olympics: John's Crazy Socks Donates $100,000 to the Special Olympics (johnscrazysocks.com) Researcher Publishes Dissertation on Employing People with Differing Abilities at John’s Crazy Socks: St. John’s University Researcher Publishes Dissertation on John’s Craz (johnscrazysocks.com) John Joins Webinar on Keratoconus: John Cronin Speaks in Webinar on Keratoconus and Down Syndrome (johnscrazysocks.com) Without the Special Olympics, There is No John’s Crazy Socks: Without the Special Olympics, there is No John's Crazy Socks (johnscrazysocks.com) Facebook: https://www.facebook.com/johnscrazysocks Twitter: https://twitter.com/JohnsCrazySocks LinkedIn: MXC  https://www.linkedin.com/in/mxcronin/ LinkedIn: JCS: https://www.linkedin.com/company/11171456/admin/ Instagram: https://www.instagram.com/johnscrazysocks/ YouTube: https://www.youtube.com/c/Johnscrazysocks/ 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.

If all the world were a skate park, celebrating our abilities and individual expression would be a given. In this episode we talk to Miki Vuckovich from USA Skateboarding about their “Skateboarding For All” initiative. The beauty found in the inclusive skating community is one we strive to cultivate in the classroom and the world. You can join them on December 11th for a Virtual Wrap Party which includes members of the U.S. Olympic team and several skateboarding legends. USA Skateboarding Web site: www.usaskateboarding.com USA Skateboarding 2021 Wrap Party (tickets and info): https://usaskateboarding.com/blogs/news/meet-the-team-usa-skateboardings-2021-wrap-party Miki Vuckovich, USA Skateboarding Director Of Development: miki.vuckovich@usaskateboarding.com Skateboarding For All initiative announcement: https://usaskateboarding.com/blogs/news/usa-skateboardings-inaugural-skateboarding-for-all-event-los-angeles-november-2021 Inaugural Skateboarding For All clinic, Los Angeles (11/6/21): https://youtu.be/hl4aWq7mWRo USA Skateboarding, Journey To Tokyo documentary (45 min): https://youtu.be/Y5zbqoKlblg What Is Adaptive Skateboarding? video (3 min): https://youtu.be/rUgWNT14iSg Adaptive Skateboarding In The Paralympics video (7 min): https://youtu.be/bM3jKgI2lxg Oscar Loreto, Jr. (USA Skateboarding Board Member and adaptive pro skater): https://www.instagram.com/oscarloretojr/?hl=en Katherine Beattie (WCMX athlete): https://www.instagram.com/ktbeattie/?hl=en Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/02/81-usa-skateboardings-skateboarding-for-all-initiative-with-miki-vuckovich/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.

This week we are grateful to have Melissa Kynoch back with us to tell the story of her son, Bertie’s, heart surgery. It is a very scary experience that about half of all family’s in the Down syndrome community experience. We thank Melissa for opening up to us about the emotions she felt and for sharing all the things she wished she knew then. 12 Step Fellowship: https://www.na.org  Wouldn’t Change A Thing - https://www.wouldntchangeathing.org  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/25/80-berties-heart-surgery-talking-about-the-scary-stuff-with-melissa-kynoch/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.

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 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.

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: https://preemptivelove.org L’Archie International: http://www.larche.org Our First Episode with Sader: https://ifweknewthen.podbean.com/e/23-raised-by-a-father-with-down-syndrome-our-interview-with-sadar-issa/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/11/78-a-sons-advocacy-another-conversation-with-sader-issa/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.

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 Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/04/77-practicing-gratitude-without-expectation-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.

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.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4  12 Step Fellowship: https://www.na.org  Wouldn’t Change A Thing - https://www.wouldntchangeathing.org  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/10/28/76-catching-up-with-melissa-kynoch-a-year-and-a-half-later/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.

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 we can face when we so often put others before ourselves. Paul’s Website: https://griefyoga.com Episode 22 - Paul’s 30 Minute Yoga Nidra Meditation: https://ifweknewthen.podbean.com/e/22-a-meditation-gift-from-paul-denniston/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/10/14/75-a-loving-kindness-meditation-gift-from-paul-denniston/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.

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 by changing the perception of people with Down syndrome. Jack and Caitie’s Website: https://linktr.ee/infiniteultras Suicide Prevention Lifeline: https://suicidepreventionlifeline.org Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/10/07/74-creating-an-inclusive-super-hero-universe-with-jack-and-caitie-clonan/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.

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://ifweknewthen701833686.wordpress.com/2021/09/30/73-down-syndrome-awareness-month-acknowledging-those-who-came-before-us/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.

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 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.

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. Book: https://www.woodbinehouse.com/product/fasten-seatbelt-crash-course-syndrome-brothers-sisters/ Workshop for siblings:  https://siblingslearnaboutdownsyndrome.com YouTube: https://www.youtube.com/user/downsyndromesibbook Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/16/fasten-your-seatbelts-a-crash-course-on-down-syndrome-for-brothers-and-sisters/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.

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 @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.

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 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.

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.

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.

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.

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.

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.

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.

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.  

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.

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.

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.

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.

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.

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.wordpress.com/2021/05/20/56-my-twin-brother-has-down-syndrome-our-conversation-with-julia-toronczak/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.

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-mountain-part-2-why-this-movie-is-so-important-an-interview-with-director-julia-anna-robinson/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.

Happy Mother’s Day! Sunday, May 9, 2021 is Mother’s Day for our Canadian, Australian & American listeners.  Mothering Sunday in the UK was back in March and in Mexico, Mothers are celebrated every year on May 10th. Wherever you are, whomever you are and however you celebrate… this episode is for all the Mothers of the world. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/06/54-mother-noun-an-ultimate-example-of-its-kind-our-mothers-day-message/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.

In this episode, Physical Therapist, Natalie Spiteri shares her personal journey through infertility, the impact of a diagnosis of Down syndrome and the yearning for the life she imagined beyond what she was told. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/04/29/53-discussing-infertility-and-a-down-syndrome-diagnosis-with-natalie-spiteri/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.

This week we are joined by 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/2021/04/22/52-a-conversation-with-megyn-price-celebrating-uncle-bill/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.

This year Liam turned 11 and in this episode we reflect where we started, what we've learned and where we are. Let's celebrate... always celebrate. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/04/16/51-eleven-years-with-liam-celebrating-another-trip-around-the-sun/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.

Another beautiful conversation with Zen Buddhist Priest Karen Maezen Miller. We all have fears. What if we could see what is at the root of these fears, acknowledge and deconstruct them and then continue forward free from those fears. Her books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1 Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/04/08/50-acknowledging-and-dismantling-fears-presence-in-our-lives-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.

An enlightening conversation with Dr. Mona Patel Gera to answer the questions parents of children with Down syndrome often have. Health Supervision Guidelines: https://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Documents/Health_Care_Information_for_Families_of_Children_with_Down_Syndrome.pdf Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/25/49-discussing-health-and-inclusion-with-pediatrician-dr-mona-patel-gera/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.

March 21st is World Down Syndrome Day and we discuss our personal journey to find our celebration and what it means to us. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/16/48-world-down-syndrome-day-the-path-to-finding-our-celebration/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.

As parents, we all find ourselves dealing with confusing emotions and challenges from time to time. In this conversation, Zen Buddhist Priest Karen Maezen Miller, gives us some guidance to help us deal with the negative. Her books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/11/47-what-do-we-do-when-faced-with-challenges-and-negativity-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.

Our conversation with Executive Producer and Director of ‘Bridgerton’, Julie Anne Robinson about the film ‘Coming Down The Mountain’ and the importance of inclusion in media. ‘Coming Down The Mountain’ on Prime Video: https://www.amazon.com/gp/video/detail/B082P67X6D/ref=atv_dp_share_cu_r  Frostig School: https://frostigschool.org Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/03/46-coming-down-the-mountain-our-interview-with-julie-anne-robinson/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.

Speech Pathologist, Kerri Wake, joins us to talk about communication, supportive tools parents can provide their children and the pathways to receiving speech therapy in the school setting. The McRory Pediatrics Website: https://www.mcrorypediatrics.com The Hanen Centre: http://www.hanen.org/Home.aspx Early Milestone List: https://speechhearing.columbian.gwu.edu/sites/g/files/zaxdzs1996/f/downloads/Milestonesguide.pdf Article on the benefits of AAC (speech generating devices): https://digitalcommons.unl.edu/cgi/viewcontent.cgi?article=1088&context=specedfacpub Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/25/45-speech-therapy-with-kerri-wake-of-mcrory-pediatrics/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.

Stephen and Lori discuss the process of acceptance, the importance of communication and how to take time for yourself. Originally set for release a year ago, this episode celebrates Liam's 10th birthday and all the accomplishments and lessons learned over a wonderful decade. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/18/44-looking-back-at-a-decade-liam-turns-10/2/ 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.

Occupational Therapist, Erin Stanford from McRory Pediatrics, visits us again for Part 2 of our OT discussion. This week we concentrate on behavior and what information parents should have to provide the best supports for their child. The McRory Pediatrics Website: https://www.mcrorypediatrics.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/08/43-occupational-therapy-erin-stanford-of-mcrory-pediatrics-part-2/2/ 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.

Occupational Therapist at McRory Pediatrics, Erin Stanford, visits us to discuss at home and at school OT and helps us more clearly define the overlap of this therapy with Physical Therapy, Speech and Behavior Therapies. The McRory Pediatrics Website: https://www.mcrorypediatrics.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/04/42-occupational-therapy-erin-stanford-of-mcrory-pediatrics-part-1/2/ 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.

Clinical Supervisor of Behavioral Services at McRoryPediatrics, Kyle Davis, visits us to discuss behavioral issues at home and at school. He also answers questions about when, how and why behaviors need to be addressed. The McRory Pediatrics Website: https://www.mcrorypediatrics.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/28/41-behavior-a-conversation-with-kyle-davis-of-mcrory-pediatrics/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.

Nikki McRory is the founder of McRory Pediatrics and in this episode Nikki gives us an insightful look at the different therapies that can help support your child in reaching their potential. The McRory Pediatrics Website: https://www.mcrorypediatrics.com The Hanen Centre: http://www.hanen.org/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/21/40-discussing-supports-with-nikki-mcrory-of-mcrory-pediatrics/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.

Steven Gustafson is a founding member and bassist of the band 10,000 Maniacs. His sister, Cathy, had Down syndrome and we got a chance to discuss with him the impact she had on his life and the lives around her. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/15/39-our-interview-with-steven-gustafson-from-10000-maniacs/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.

In this episode Stephen and Lori discuss facing some of the difficulties of 2020 and how to move onto a fresh new year in a positive way. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/06/38-moving-into-a-new-year-one-moment-at-a-time/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.

In this episode we talk with Cristina Bowman of Diff-Ability about the British soap opera Emmerdale and it’s recent storyline which depicts a couple having an abortion because their baby has Down syndrome.  Petition against Emmerdale: https://www.change.org/p/itv-bin-emmerdale-s-prejudiced-storyline-about-down-s-syndrome?recruited_by_id=2f3349b0-f96d-11e5-80fd-c1f380c9ade0  DIff-Ability: https://www.diffability.co.uk  10% Videos: https://www.youtube.com/playlist?list=PLzOTYSYK2uvr96j-WowLKrxwDG-u9EsRx  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/12/05/37-our-communitys-response-to-emmerdales-negative-storyline-about-down-syndrome-with-cristina-bowman/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.

We are thankful to have Dr. Brian Skotko on today’s episode. Dr. Brian is the director of the Down Syndrome Program at Massachusetts General Hospital, a Board-certified medical geneticist and has dedicated his professional energies toward children with cognitive and developmental disabilities.  Today we talk about his new online clinic, DSC2U, the importance of inclusion and how we as a community can help the medical profession improve their delivery of a Down syndrome diagnosis. DSC2U: https://dsc2u.org  LUMIND IDSC FOUNDATION: www.lumindidsc.org  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/25/36-giving-everyone-access-to-a-down-syndrome-specialty-clinic-with-dsc2u-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.

In our second interview with Dr. Jill we discuss the 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/2020/11/19/35-creating-a-realistic-approach-to-a-healthy-dental-routine-dr-jill-lasky/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.

The summer is a time to play and relax but if you use it as a time to front load for the coming school year, as well, it can be that academic advantage you have been looking for. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/16/34-how-to-use-the-summertime-to-your-advantage/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.

We originally created this podcast to support parents of children with Down syndrome and this episode is directed specifically to new parents who have just recently received their child’s diagnosis. Our message is of hope and possibility in a world which often offers very little. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/13/33-our-congratulations-message-to-new-parents/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.

Chris joins us again with his parents, Nik and Patty to discuss how they have changed their approach to learning and how that has prepared Chris to do things no person with Down syndrome has ever done before. Chris’s Website: https://chrisnikic.com  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/05/32-changing-our-world-chris-nikics-1-philosophy/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.

Nic joins us again to talk about the Easterseals Disability Film Challenge and letting your voice be heard through the arts. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/29/31-using-the-arts-to-tell-your-story-a-conversation-with-nic-novicki/2/  The Easterseals Disability Film Challenge: https://disabilityfilmchallenge.com  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.

In honor of Down Syndrome Awareness Month we discuss our part, as a community, in changing the perceptions of Down syndrome through our thoughts and words. We also look back on some lessons we have learned from past guests. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/22/30-down-syndrome-awareness-month-working-together-to-change-perceptions/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.

We just had our first Zoom IEP session since the pandemic started and we have found several new things that parents should be aware of. We also further discuss ways to prepare for these meetings and touch on questions every parent should ask their IEP team. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/15/29-insights-into-our-first-covid-19-iep-session/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.

Our conversation with author, wife, mother of three and Down syndrome advocate, Eleanor Baggaley. We discuss inclusion and her children’s books, particularly ‘Eva the Mermaid’. Eleanor also shares about her work with the organization Positive About Down Syndrome and some of her future plans of advocacy in the community. Eleanor’s Website: https://www.eleanorbaggaley.com/shop Positive About Down Syndrome: https://positiveaboutdownsyndrome.co.uk Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/08/28-a-story-of-inclusion-with-eleanor-baggaley-author-of-ava-the-mermaid/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.  

IEP's can be very overwhelming especially when you feel like you don't have all the information that you want to have. In this episode we share some of the things we have learned to be helpful during this sometimes stressful process and ways to advocate for your child while still keeping your peace. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/28/27-our-iep-process-somethings-we-have-learned/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.

Our second interview with members of the PALS Programs. We talk about how the PALS Programs is planning for future camps and some of the more personal experiences the founders of the organization have with Down syndrome. Joining us is Executive Director, Jenni Newbury Ross and her mother Robyn and brother Jason. We were also joined by Congratulations Project Associate, Grace Wahle and Communications Coordinator, Colton Davies.  PALS Program: https://www.palsprograms.org Congratulations Project: https://www.congratulationsproject.org Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/24/26-pals-programs-a-deeper-conversation-about-down-syndrome/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website 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.

Our second interview with Rachel Mewes. Rachel is a contributing editor to Making Chromosomes Count, the Down syndrome community newspaper. She opens up on her not so uncommon birth story and the prejudices she found in the medical profession. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/17/25-a-right-to-celebrate-when-the-medical-profession-steals-the-joy-of-new-parents-rachel-mewes/2/ Making Chromosomes Count: http://makingchromosomescount.co.uk  Making Chromosomes Count on Twitter: https://twitter.com/ChromosomesNews  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.  

Comedian, actor, producer and disability advocate Nic Novicki joins us to talk about the Easterseals Disability Film Challenge and the importance of disability inclusion in film. Film Challenge Website: https://disabilityfilmchallenge.com  Our 2020 EDFC entry: https://youtu.be/WiX-rt51szo  All the challenge’s films on YouTube: https://www.youtube.com/playlist?list=PLOhZ4i5Tnk3iq44Tzn03rBMOcr0bqFrnV  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/11/24-the-importance-of-disability-inclusion-in-film-nic-novicki/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.

Our enlightening and inspiring interview with Sader Issa. As parents we are always told what our children will never do.  What if those limits were not part of the conversation? Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/03/23-raised-by-a-father-with-down-syndrome-our-interview-with-sadar-issa/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.  

Paul Denniston has gifted us a 30 minute Yoga Nidra Guided Meditation. Enjoy.  Paul’s Website: https://griefyoga.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/27/22-a-meditation-gift-from-paul-denniston/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.

Paul Denniston discusses how we can all heal through meditation and his Grief Yoga.  Paul’s Website: https://griefyoga.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/20/21-a-conversation-about-healing-and-self-care-with-paul-denniston/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.

Another informative talk with attorney Georgianna Junco-Kelman. What do parents need to know heading into a new school year amidst COVID-19?  Georgianna's Website: http://www.losangelesspecialedattorney.com  CA Special Education Guidelines for COVID-19: https://www.cde.ca.gov/ls/he/hn/specialedcovid19guidance.asp  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/11/20-a-new-school-year-covid19-ieps-supports-georgianna-junco-kelman/2/   Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website 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.  

Our interview with members of the PALS Programs. We talk about the organization and specifically their Congratulations Project. Joining us is Co-founder and Executive Director, Jenni Newbury Ross and her mother and brother, Robyn and Jason. We were also joined by Congratulations Project Associate, Grace Wahle and Communications Coordinator, Colton Davies. Congratulations Project: https://www.congratulationsproject.org  PALS Program: https://www.palsprograms.org  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/06/19-pals-programs-congratulations-project/2/  Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website 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.

Our second interview with Ed Casagrande and Matt MacNeil 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 CDSS "Down Syndrome Answers" Initiative: https://cdss.ca/down-syndrome-answers/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/07/23/18-project-understood-part-2-two-perspectives-of-down-syndrome-ed-casagrande-and-matt-macneil/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.

Dr. Jill Lasky discusses the importance of Pediatric Dentistry, how to introduce dental care and specifics pertaining to the Down Syndrome community. Lasky Pediatric Dental Group: https://www.laskypediatricdental.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/07/16/17-creating-a-positive-dental-health-relationship-dr-jill-lasky/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.

Interview with Chris Nikic and his parents, Nik and Patty. Chris is the first person with Down syndrome to complete a half IRONMAN and is training to attempt the full 140.6 mile course in November. We discuss 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/2020/07/07/16-pushing-the-limits-chris-nikics-road-to-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.

Interview with Ed Casagrande and Matt MacNeil 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 Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/30/15-project-understood-ed-casagrande-and-matt-macneil-the-canadian-down-syndrome-society/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.

Our second interview with Julie Picot, a mother of a child with Down Syndrome, and some of the challenges she has faced regarding stereotypes and preconceived notions of her child's disability. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/24/14-an-honest-conversation-interview-with-julie-picot/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.

Interview with Child Development Specialist, Caroline Bencze-Fernandez. In this second appearance on the podcast, Caroline 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 over the years. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/17/13-early-intervention-at-home-tools-and-supports-caroline-bencze-fernandez/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.

An interview with Melissa Kynoch, known by many for being on the BBC documentary LIFE AND BIRTH along with her sons Dei and Bertie.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/11/12-our-interview-with-melissa-kynoch-part-2/2/  BBC 'Life and Birth: https://www.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4  Wouldn’t Change A Thing:Book- https://www.wouldntchangeathing.org/product/wcat-book-by-celebrate-t21/ FaceBook Page- https://www.facebook.com/wouldntchangeathingdotorg/ Twitter- https://twitter.com/Wouldntchangea1 Website- https://www.wouldntchangeathing.org  Email: WCATbook@gmail.com  12 Step Fellowship: https://www.na.org  Disability Film Challenge: https://disabilityfilmchallenge.com  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.

Our Interview with Rachel Mewes to discuss her interactions with Twitter and their reluctance to combat hate speech toward people with Down Syndrome.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/02/11-the-responsibility-and-power-of-words-on-social-media-interview-with-rachel-mewes/2/  Making Chromosomes Count: http://makingchromosomescount.co.uk  Making Chromosomes Count on Twitter: https://twitter.com/ChromosomesNews  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.

An interview with Melissa Kynoch, known by many for being on the BBC documentary LIFE AND BIRTH along with her sons Dei and Bertie.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/27/10-our-interview-with-melissa-kynoch-part-1/2/  BBC 'Life and Birth: https://www.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4  Makaton: https://wetalkmakaton.org  The Makaton Charity on Twitter: https://twitter.com/MakatonCharity  Makaton with Lucinda on Twitter: https://twitter.com/makatonlucinda  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.

An interview with our daughter Sophia to discuss her experiences of having a brother with Down Syndrome.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/21/9-sibling-advocacy-interview-with-sophia-saux/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.

Interview with Child Development Specialist, Caroline Bencze-Fernandez. She explains the importance of Early Intervention, how therapies have changed throughout her 30 year career and what parents should know.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/14/8-early-intervention-interview-with-caroline-bencze-fernandez/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.

Interview with Julie Picot discussing her birth story, some of the misinformation she encountered and how she dealt with the post diagnosis fears.  Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/05/7-prenatal-care-and-advocacy-interview-with-julie-picot/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.

This episode focuses on a sometimes challenging aspect of parenting a child with Down Syndrome. The emotional part of dealing with IEPs, assessments and evaluations that seem to happen right around our children's birthday celebrations. We discuss how we managed these stresses and how we maybe would have done some things differently.  Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/30/ep-6-managing-the-stresses/3/   https://www.IfWeKnewThen.com  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.  

In this episode we discuss preparations and expectations of IEP meetings, what we wish we would have known years ago and the advantages of having an advocate or attorney by your side.  Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/24/5-preparing-for-your-iep/3/  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.

Hello and welcome to the If We Knew Then Podcast. We are parents of two children and one of them has Down Syndrome, Liam. 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 parenting.  Full Episode Transcript:Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/23/introduction-our-down-syndrome-advocacy-story/  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.

PT in School. Qualifying for services and what to expect with a child with Down Syndrome.  Interview with Pediatric Physical Therapist Natalie Spiteri.  Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/24/4-in-school-physical-therapy-natalie-spiteri/3/  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.

Early Intervention PT. What is it? How to get it? What to expect and how can parents of children with Down Syndrome use it to its fullest.  Interview with Pediatric Physical Therapist Natalie Spiteri.  Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/24/3-early-intervention-physical-therapy-natalie-spiteri/3/   Gross Motor Skills for Children With Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome) https://www.amazon.com/dp/1606130099/ref=cm_sw_r_cp_api_i_YYaNEb5AEFWZ3  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.

Dealing with IEP's and Assessments that seem to happen around our children’s birthdays. Talking through the process of these events in our lives and how they effect all IEP families. Not just those associated with Down Syndrome.  Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/23/2-all-that-annual-stuff-iep-and-assessments/3/  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.

What should we do at this time? Are IEP's happening? What should we expect? How does this impact next school year?  We feel fortunate that Liam's Elementary School Team is doing their best to support us in helping Liam access his schoolwork.  We know that this is not always the case and that parents are having a lot of questions. We hope this helps to answer some of them. Thank you to Georgianna and the knowledge she shares in this episode.  Special Guest Georgianna Junco-Kelman of https://www.SpecialKidsAttorney.com  Contact your Senator: https://www.senate.gov/general/contact_information/senators_cfm.cfm  Contact your Representative: https://www.house.gov/representatives  Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/23/1-covid-19-and-ieps-special-episode-with-georgianna-junco-kelman/3/  Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website 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.