If We Knew Then - Down Syndrome Podcast

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.  

This week we revisit our interview with Lynette Louise who is board certified in Neurofeedback. We were very interested in the science of Neurofeedback but early on in the conversation we moved to a serious discussion about the use of the r-word and the reasons why Lynette uses it. This episode may feel a bit intense for many of you and we understand why, but we highly recommend listening all the way through to the end. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/02/25/167-a-discussion-about-using-the-r-word-with-lynette-louise/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 the wonderful Julie Picot back on the show to discuss her experience transitioning her daughter, Elyse from TK to Kindergarten. We also touch upon how very often parents feel shame when guiding their school aged children out of diapers. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/02/17/166-finding-the-right-supports-without-shame-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.

Dr. Ilona Kleiner has been both our children's pediatrician since birth. Today we discuss with her the importance of always seeing the whole child and how her care for Liam really isn't any different than that of a typical child. Dr. Kleiner's Bio: https://www.pamgdocs.com/copy-of-about-our-doctors-1 Recommend books: What’s Going on Down There?  by Karen Gravelle What’s Happening to My Body by Lyna Madras Guy Stuff by Cara Natterson It’s Perfectly Normal by Robin Harris Being You: The Body Image Book by Charlotte Markey Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/01/28/165-picking-the-right-pediatrician-with-dr-ilona-kleiner/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 Charlotte Fien’s path to advocacy, breaking down the barriers of education, the love story between her and her husband Riley, and how her infectious can-do attitude has influenced him to break down barriers in his own life. It is the story of two humans creating the life they want to live and never taking no for an answer. Charlotte & Riley Forever FB Page: https://www.facebook.com/autismintune  A World Without Down’s Syndrome (Documentary): https://www.amazon.com/gp/video/detail/B07MSHKFKQ/ref=atv_dp_share_cu_r Charlotte’s Speeches: 2017 United Nations: https://youtu.be/1Xqku6RwaAY?si=KYf7jnx-Uc56cgRP 2018 United Nations: https://youtu.be/FHglwa8vlYg?si=hwjusGDIsVSh5_ty Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/01/21/164-charlotte-and-riley-not-taking-no-for-an-answer/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 Martin Luther King Day! We start this new year by revisiting with our friend, Zen Buddhist Priest, Maezen Miller. We discuss having patience and letting go in order for it to all unfold. Believing and having patience can enable our children to be who they are, go where they go and do what they do, to become exactly who they are. Karen Maezen Miller: https://karenmaezenmiller.com Maezen’s Book on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1 Steve & Michel Gleason Foundation: https://teamgleason.org Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/01/14/163-revisiting-patience-in-the-new-year-with-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.

Follow Stephen while he unexpectedly flies back to Louisiana due to his mother’s illness. He reflects on the importance of experiencing all of life’s moments and truly being present. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/22/162-living-in-the-moment/2/ Please follow us on Twitter @ifweknewthenPOD you can drop us a 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, Stephen and Lori discuss another angle in your next Awareness Campaign. Some of the most important people to make aware of our community's potential are educational professionals. We as parents can advocate but it just might be our children who change the minds of those in charge of their education. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/14/161-down-syndrome-awareness-month-2023-bringing-awareness-to-our-communitys-potential/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.

Joining us today is Liam Starkey from The Inclusive Hub. The Hub was started in 2016 helping small groups of Autistic children around Liverpool, England take part in non-contact boxing and fitness sessions. It has now expanded and continues to empower people of all ages and abilities through exercise.  Website: www.theinclusivehub.co.uk Order a tee shirt: transalpino.co.uk Twitter: https://twitter.com/liamstarkey84 Instagram: https://www.instagram.com/the_inclusive_hub/?hl=en Facebook: https://www.facebook.com/RotundaInclusiveHub Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/08/160-the-inclusive-hub/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 Sandra Baker from the Down Syndrome Association of Los Angeles (DSALA) and Dr. Brian Skotko from the Down Syndrome Clinic To You (DSC2U) to discuss their collaboration in supporting Spanish-Speaking families that have a member with Down syndrome.   DSC2U: www.DSC2U.org DSALA: www.DSALA.org DSALA Contact: (818) 786-0001 info@DSALA.org NOTES FROM DR. SKOTKO: We have written a summary paper for the lay audience to help them access and understand all of our research findings (available in English and Spanish). We have created ready-to-go Facebook posts (English and Spanish) and Twitter posts (English and Spanish), summarizing our research findings. We also developed this Awareness Building event toolkit, so that Down syndrome groups can continue to host meaningful diversity dialogues in their community.  We provide ready-to-go materials and easy action steps. Albert Pless and I gave Grand Rounds at UCSF Benioff Children's Hospital and our own MGH Genetics Division about our research findings.  The recording for this presentation is available for viewing.  Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/10/01/159-dsala-and-dsc2u/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 were joined by Katelyn Quintero from Best Buddies International, which is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, and inclusive living for individuals with intellectual and developmental disabilities.  Website: www.bestbuddies.org Champion of the Year: www.bestbuddieschampion.org The Walk: www.bestbuddiesfriendshipwalk.org Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/24/158-best-buddies-with-katelyn-quintero/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 had such fun talking to Liz Plachta, the founder of Ruby’s Rainbow!  Ruby’s Rainbow grants scholarships to students with Down syndrome who are seeking post-secondary education, including enrichment or vocational classes, and helping them achieve their dreams of higher education while spreading awareness of their capabilities and general awesomeness. Ruby’s Rainbow: www.rubysrainbow.org WDSD Pledge: www321pledge.org Facebook Page: https://www.facebook.com/RubysRainbow/ Instagram: https://www.instagram.com/rubysrainbow/ Twitter: http://www.twitter.com/rubysrainboworg Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/16/157-rubys-rainbow/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 Nancy Gianni to talk about her foundation, GiGi’s Playhouse, which provides FREE, life-changing therapeutic, educational, and career training programs for 30,000+ individuals of all ages, everyday. GiGi’s Playhouse empowers families by maximizing opportunities for daily achievement and lasting acceptance and in turn, showing the world what individuals with Down syndrome are truly capable of achieving as students, co-workers, volunteers, friends, and valued members of the community. GiGi’s Playhouse: https://gigisplayhouse.org Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/09/156-gigis-playhouse-with-nancy-gianni/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 give an update on our son Liam, a 13-year old in middle school, and discuss how far he has come, what supports have helped us navigate his transitions into middle school and how we are helping him find the independence every teen wants to cultivate.  Citizen's Of The World Middle School: https://www.cwcsilverlake.org Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/09/02/155-using-your-iep-to-make-the-most-of-middle-school/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 is our conversation with actress Megyn Price to discuss inclusion, the importance of encouraging others to express their uniqueness and how her Uncle, who had Down syndrome, affected her family in a positive way. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/08/27/154-revisiting-our-interview-with-megyn-price/2/ Please 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 the story of Jad Issa, a man with Down Syndrome who is a husband, father and respected citizen. At diagnosis, parents of children with Down syndrome are immediately told all the things their child won’t do. Jad’s life shows us that these preconceptions aren’t only untrue but the very belief in them often cause limitations. As with every child, all things are possible. We hope that this conversation with Jad’s son Sader, a dentist in Damascus, brings comfort to parents to believe in what may be thought of as impossible. Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/08/20/jad-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.

This episode is the entire conversation we had with Matt MacNeil and Ed Casagrande from the Canadian Down Syndrome Society concerning their collaboration with Google AI to create a database that can help train Google’s speech recognition technology to better understand people with Down syndrome. Donate your voice at: https://projectunderstood.ca Learn more about the CDSS: https://cdss.ca Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/08/13/152-revisiting-the-canadian-down-syndromes-project-understood-training-speech-technology/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 Abby Brandon-Livits and Misty Adams from the National Down Syndrome Society to talk about the 2023 NYC Buddy Walk and it’s wonderful Times Square Video presentation that redefines the image of the Down syndrome community. NYC Buddy Walk website: https://give.ndss.org/event/2023-new-york-city-buddy-walk-r/e478474 National Down Syndrome Society: www.NDSS.org FaceBook: https://www.facebook.com/NDSS1979 Instagram: https://www.instagram.com/ndssorg/ Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/08/06/151-nyc-buddy-walk/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're joined again by Dr. Eric Rubenstein, an Assistant Professor of Epidemiology at Boston University School of Public Health. Eric is a researcher, a volunteer for the Special Olympics and a lifelong advocate of individuals with Down syndrome. This conversation is a round table discussion of change and evolution, progress and insights that we feel so fortunate to be able to share with each of you today. Eric’s Website: https://sites.bu.edu/rubenstein Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/30/150-ableism/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.