128. The Next Generation of Advocacy

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.