If We Knew Then - Down Syndrome Podcast
We are parents of two children and one of them just happens to have Down syndrome. When Liam was born we didn’t know very much about Down syndrome and most of the information we did have didn’t seem very hopeful and positive. Well this podcast aims to share stories, break down stereotypes and help change the narrative by redefining Down syndrome.
Episodes
Saturday Jul 20, 2024
176. Revisiting 10,000 Maniacs Founding Member Steven Gustafson
Saturday Jul 20, 2024
Saturday Jul 20, 2024
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.
Sunday Jun 16, 2024
175. Communicating Our Stories with Sid and Vaish Sarathy
Sunday Jun 16, 2024
Sunday Jun 16, 2024
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.
Sunday Jun 09, 2024
174. Advocating For Speech Therapy - Julie Picot
Sunday Jun 09, 2024
Sunday Jun 09, 2024
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.
Monday May 27, 2024
Monday May 27, 2024
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.
Saturday May 11, 2024
172. Happy Mothers Day: We Celebrate You
Saturday May 11, 2024
Saturday May 11, 2024
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.
Sunday Apr 28, 2024
171. Alzheimer’s Disease In People with Down Syndrome - Dr. Elizabeth Head
Sunday Apr 28, 2024
Sunday Apr 28, 2024
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.
Sunday Apr 21, 2024
170. Celebrating The Life of Carl Erskine with Ted Green
Sunday Apr 21, 2024
Sunday Apr 21, 2024
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.
Sunday Apr 14, 2024
169. The Annual DSDN Retreats with Ben Hughes
Sunday Apr 14, 2024
Sunday Apr 14, 2024
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.
Thursday Mar 07, 2024
168. Liam's 14th Birthday: Sharing Some Insight
Thursday Mar 07, 2024
Thursday Mar 07, 2024
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.
Sunday Feb 25, 2024
167. A Discussion About Using The R-Word with Lynette Louise
Sunday Feb 25, 2024
Sunday Feb 25, 2024
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.
Sunday Feb 18, 2024
166. Finding The Right Supports Without Shame - Julie Picot
Sunday Feb 18, 2024
Sunday Feb 18, 2024
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.
Sunday Jan 28, 2024
165. Picking The Right Pediatrician with Dr. Ilona Kleiner
Sunday Jan 28, 2024
Sunday Jan 28, 2024
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.
Thank you for listening!
We are so happy that we can connect with people from all over the world and we appreciate you. If you would be so kind to rate, subscribe and comment where ever you listen to podcasts, it would help us reach an even larger audience.
All the best to you and please stay in touch. Stephen and Lori Saux