If We Knew Then - Down Syndrome Podcast

Happy Mother’s Day to all the mothers in this beautiful Down syndrome community. You are a force and we thank and celebrate you. Episode Transcript: 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 revisiting our interview with Melissa Kynoch, known by many for being featured on the BBC documentary LIFE AND BIRTH. Millions of people have had a chance to watch her positive attitude in the face of her son Bertie's Down syndrome diagnosis. Now, five years later, the docu-series is available in the United States on Amazon Prime. Season 1, Episode 6: https://www.amazon.com/gp/video/detail/B09LCDLPFV/ref=atv_dp_share_cu_r Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/05/04/186-life-and-birth-on-amazon-prime-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 discuss the need and power for us to cultivate self pride and worth within the disability community. In doing so, we nullify the damaging words and opinions of those who wish to label and minimize individuals with disabilities or anyone for that matter. Episode Transcript: 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 are joined again by Mrs. Christina Aries, the Director of Adult Development at Citizens of the World Charter Schools for the second part of our discussion about brain development in the adolescent years. Episode Transcript: 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 are joined by Mrs. Christina Aries, the Director of Adult Development at Citizens of the World Charter Schools for a two-part discussion about brain development in the adolescent years. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/03/20/182-wdsd-2025/2/ 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.

It’s World Down Syndrome Day 2025 and we did it! We released an episode on March 21st. Many in our community do so well at preparing for this day every year and we greatly appreciate them but also, here’s to all those that feel like they are always behind or that their ‘to do” list is getting bigger, not smaller. We celebrate you and your loved ones today! Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/03/20/182-wdsd-2025/2/ 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 have another conversation with filmmakers Olivier and Hilda to discuss their IEP experience featured in their film FORGET ME NOT: INCLUSION IN THE CLASSROOM. These talks not only shows us that we are not alone in this fight, but also gives us some powerful information that we can use in our own IEP meetings. Documentary Website: https://forgetmenotdocumentary.com Streaming FREE On tubi: https://tubitv.com/movies/697442/forget-me-not-inclusion-in-the-classroom?utm_campaign=web-sharing Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/03/02/181-olivier-and-hilda-bernier-and-their-iep-experience/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 Birthday Liam! In this week’s episode we discuss the lessons we have learned over the last 15 years in both education, behavior and societal changes. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/24/180-liam-turns-15-what-have-we-learned-in-this-journey/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 are joined by Hilda and Olivier, who are documentarians of a fantastic film “Forget Me Not”. This film tells the story of our children’s fight for an equal education and raises the question of inclusion versus segregation. It’s a documentary that is so important to making changes in the lives of individuals with Down syndrome. Website: https://forgetmenotdocumentary.com Streaming FREE On tubi: https://tubitv.com/movies/697442/forget-me-not-inclusion-in-the-classroom?utm_campaign=web-sharing Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/09/179-forget-me-not/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 July 2025, DSDN will host their annual Rockin' Dad Retreat for fathers of children with Down Syndrome to gather from across the country. We are joined again by Ben Hughes to give us all the details of this year’s event and also an update on his own journey. WHEN: July 11-12, 2025 WHERE: Hilton San Diego Gaslamp Quarter, San Diego, CA Registration info: https://www.dsdiagnosisnetwork.org/dad-retreat-registration Ben’s email: ben@dsdiagnosisnetwork.org Ben’s Personal Fundraising Page: https://dsdn.networkforgood.com/projects/237847-ben-hughes-s-fundraiser Get the DSDN App today! https://www.dsdiagnosisnetwork.org/dsdn-app Episode Transcript: 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.

Lori recorded this episode in October but what is very apparent is how challenges and the unknown are an everyday thing that helps tell our stories, In this episode Maezen talks about finding our space and our 'me' time. Karen Maezen Miller’s Website: https://karenmaezenmiller.com Maezen’s books on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1 Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/01/27/177-showing-up-for-the-challenges-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.

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. Today we revisit that interview to share this sibling love story. Episode Transcript: 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 revisit our conversation with Sid and Vaish Sarathy. Sid, who has the duel diagnoses of autism and Down syndrome. Although he is non-Speaking, Sid is a poet with two published books. Dr. Vaish Sarathy is a functional nutrition practitioner and science educator. She is the founder of Functional Nutrition for Kids and Plum Pudding Chemistry, both practices designed to optimize the learning potential of kids with Down syndrome and/or autism using both functional medicine and non-linear education principles. In this episode, we discuss their journey with communication, breaking down barriers of misperception and limiting thoughts to support Sid in freeing his voice and the responsibility that freedom brings with it. Sid’s Poetry Books: https://push-press.blogspot.com Sid’s Instagram: https://www.instagram.com/downlikesid/ Vaish’s Website: https://functionalnutritionforkids.com Vaish’s Podcast Funtional Nutrition & Learning For Kids: https://podcasts.apple.com/us/podcast/functional-nutrition-and-learning-for-kids/id1478145610 Rapid Prompting Method (RPM): https://www.halo-soma.org Chris Martin’s Website: www.UnrestrictedInterest.com Connections Academy: https://www.connectionsacademy.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/06/15/175-communicating-our-stories-with-sid-and-vaish-sarathy/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 once again sit down with Julie Picot but this time we are briefly joined by her daughter Elyse. We take a deep dive on the speech and reading journey in our community and discuss different ways to advocate for our children. Teach Your Child To Read in 100 Easy Lessons: https://a.co/d/3CEtpLY Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/06/09/174-advocating-for-speech-therapy-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 week we revisit our interview with Jake Pratt, who with support, advocacy and inclusion is living his dreams and changing the narrative for people with Down syndrome. Jake’s UPS Commercial: https://youtu.be/fw97dqK6uiM Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/05/27/173-the-endless-possibilities-of-people-with-down-syndrome/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 celebrate all the powerful mothers who give so much to their children day in and day out. Remember how strong you are. The world runs on that power and we thank you. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/05/11/172-happy-mothers-day-we-celebrate-you/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 had the privilege to talk to Dr. Elizabeth Head, Professor and Vice Chair for research at the University of California, Irvine in the department of Pathology. Dr. Head has published more than 150 peer reviewed papers and has dedicated over 20 years to the study of aging and Alzheimer’s disease with a focus on people with Down syndrome. Head Lab: https://sites.mind.uci.edu/headlab/ ABC-DS study - https://www.nia.nih.gov/research/abc-ds DSConnect - https://dsconnect.nih.gov/ Center for Aging Research – Down syndrome - https://sites.mind.uci.edu/cfar-ds/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/04/27/171-alzheimers-disease-in-people-with-down-syndrome-dr-elizabeth-head/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 world lost pioneering Down syndrome advocate Carl Erskine on April 16, 2024, at the age of 97. Carl and his wife Betty, were involved deeply with the Special Olympics and charities which aimed at helping people with developmental disabilities such as his son Jimmy. Carl Erskine was a MLB All-Star, World Series Champion, ally of Jackie Robinson and the last surviving member of the “Boys of Summer” Brooklyn teams of the 1950’s. To honor Carl’s life, we revisit our episode with documentarian Ted Green discussing his film ’The Best We’ve Got: The Carl Erskine Story’. As Ted says in this conversation, Carl and Betty are the perfect embodiment of what is on Jackie Robinson’s tombstone. “A life is not important except for the impact it has on other lives“. Godspeed Carl. Website: https://www.carlerskinefilm.com Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/04/21/170-celebrating-the-life-of-carl-erskine-with-ted-green/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 fortunate to have Ben Hughes back on the podcast to discuss the Down Syndrome Diagnosis Network’s (DSDN) annual “Rockin’ Retreats” that offer our community the connection and respite caregivers truly need. Retreat information page: https://www.dsdiagnosisnetwork.org/dsdn-retreats Dad's retreat registration page: https://form.jotform.com/DSDN/2024-rockin-dad-retreat Mom's retreat registration page: https://form.jotform.com/DSDN/2024-rockin-mom-retreat DSDN website: https://www.dsdiagnosisnetwork.org/ DSDN Facebook Page: https://www.facebook.com/DownSyndromeDiagnosisNetwork DSDN main fundraising page: https://dsdn.networkforgood.com/projects/201851-2024-dsdn-rockin-fundraising A link to Ben’s personal DSDN fundraising page: https://dsdn.networkforgood.com/projects/207713-ben-hughes-s-fundraiser Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/04/14/169-the-annual-dsdn-retreats-with-ben-hughes/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 son turned 14 last weekend and in this episode we reflect on the joys, challenges and growth we've experienced together on this journey with Liam. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/03/09/168-liams-14th-birthday-sharing-some-insight/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our 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.