If We Knew Then - Down Syndrome Podcast

152. Revisiting The Canadian Down Syndrome Society’s Project Understood - Training Speech Recognition Technology

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.

151. The New York City Buddy Walk and Times Square Video with Abby Brandon-Livits and Misty Adams

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.

150. Down Syndrome Research, Ableism and The Right To Just Be with Dr. Eric Rubenstein

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.

149. Down Syndrome and Alzheimer’s Research with Dr. Tom Mahan

Today we're joined by Dr. Tom Mahan, who specializes in Alzheimer’s research with a focus on individuals with Down syndrome. Tom is a father of three boys and his oldest son, Teddy, has down syndrome which is what sparked him into taking his already existing research of Alzheimer’s and guiding it to a focus on individuals with Down syndrome.
ABC-DS: https://www.nia.nih.gov/research/abc-ds
NIH INCLUDE Project: https://www.nih.gov/include-project
DSDN Facebook Page: https://www.facebook.com/DownSyndromeDiagnosisNetwork
DSDN Website: https://www.dsdiagnosisnetwork.org/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/23/149-alzheimers/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.

148. RODS Heroes - Our Interview with Brady Murray

This week we visit with Brady Murray of RODS Heroes, an organization meant to inspire families to answer the call to adopt children born with Down syndrome and other special abilities. Brady and his wife Andrea have seven children and it was their adopted son Cooper who brought our attention to the Murray’s advocacy though his appearances throwing out the first pitch a Major League Baseball games. In this conversation we also talk about Brady’s Special Needs Life Planning venture, Special Abilities Network and discuss his eldest son, Nash and the experience of receiving Nash’s Down syndrome diagnosis in 2007.
RODS Heroes: https://rods.org
Facebook Page: https://www.facebook.com/rodsheroes
Instagram: https://www.instagram.com/rodsheroes/
Special Abilities Network: https://specialabilitiesnetwork.com/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/16/148-rods-heros/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.

147. T21 Coffee - Giving Back to the Down Syndrome Community - Johan Lindborg

In this episode, we speak with Johan Lindborg, founder of t21 Coffee. We had a beautiful conversation discussing his journey with his 12 year old son Cooper and how he has transformed from the doubts he had and the darkness he felt when receiving the Down syndrome diagnosis. It is an open and honest discussion that touches on fears to which any parent can relate. In the face of those fears, he created T21 Coffee, which both employs individuals with Down syndrome and donates a portion of every bag sold to Down syndrome research.
T21 Coffee: https://www.t21coffee.com
Facebook Page: https://www.facebook.com/t21coffee
Instagram: https://www.instagram.com/t21coffee1/
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/09/147-t21-coffee/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.

146. Down Syndrome Diagnosis Network (DSDN) with Ben Hughes

Today we are joined by Ben Hughs to discuss the Down Syndrome Diagnosis Network (DSDN) and how it empowers new parents with online supports, information, and resources. We also talk about the in person “Rockin’ Retreats” that offer our community the connection and respite necessary, but not always utilized, on the journey for every parent and caregiver.
DSDN Facebook Page: https://www.facebook.com/DownSyndromeDiagnosisNetwork
DSDN Website: https://www.dsdiagnosisnetwork.org/
DSDN Retreats: https://www.dsdiagnosisnetwork.org/dsdn-retreats
Ben’s Email: ben@dsdiagnosisnetwork.org
Governor Pritzker’s Commencement Speech: https://youtu.be/NhuIU_kXJDE
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/07/01/146-dsdn/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.

145. A Grassroots Movement to Change the Narrative: A Conversation with Ted Green

Ted Green is a documentarian whose latest film, ‘The Best We’ve Got: The Carl Erskine Story’, will be airing on PBS SoCal July 4th. Ted’s film is an in-depth look at Carl Erskine, a Dodgers pitcher whose son Jimmie was born with Down syndrome 63 years ago, a time in our country’s history when segregation plagued humanity. Carl and Betty, when faced with the inevitable institutionalization of their son, which was the option that was customarily given by the medical community to protect the integrity of their family unit, made the choice to take their child home and raise him. A decision for the time that took great courage, taking some of the first steps to change the narrative of Down syndrome.
Stream The Film: https://watch.eventive.org/heartlandfilm
Website: https://www.carlerskinefilm.com
EPIC Website: http://soindiana.org/EPIC
EPIC Promo (3:30): https://vimeo.com/710911325/b293dfbb38
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/06/26/145-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.

144. Non-Speaking Is Not Non-Communicating - Vaish and Sid Sarathy

Today we are joined by Vaish and Sid Sarathy. 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. Sid, who has the diagnoses of autism, Down syndrome, and non-speaking, is, among other things, a poet with two published books of poetry.
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.
Full Interview Video (01:33:17): https://youtu.be/DkE4ZkYdSjM
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/2023/06/19/144/2/
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.

143. Letting Go: A Conversation with Karen Maezen Miller

In this episode we speak again to Zen Buddhist Priest, Karen Maezen Miller and discuss the art of letting go, letting the answers be in the moment, and finding surrender in acceptance of that moment.
Karen Maezen Miller 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/2023/06/09/143-letting-go/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.

142. Learning From Our Mistakes: Deconstructing an IEP with Julie Picot

In this episode, Julie Picot shares the experience of her latest series of IEP’s meant to usher her daughter Elyse into the Los Angeles Public School system.
LAUSD Complaint Response Unit
Website: https://achieve.lausd.net/Page/3581
Email: EquityCompliance@lausd.net
Phone: (213) 241-7682  TTY: (213) 241-2511
Directions To File A Due Process (PDF): https://achieve.lausd.net/cms/lib/CA01000043/Centricity/domain/168/froms/REF%201410.9%20Attachment%20A%20Directions%20to%20File%20for%20Due%20Process.pdf
Alternate Dispute Resolution (PDF): https://achieve.lausd.net/cms/lib/CA01000043/Centricity/Domain/1220/ADR_Brochure_English_Spanish_6.22.pdf
LAUSD Uniform Complaint Procedures Form (PDF): https://achieve.lausd.net/cms/lib/CA01000043/Centricity/Domain/383/03%20BUL-5159.11%20UCP%20Complaint%20Form_English.pdf
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/06/04/142/2/
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.

141. Julie and Aaron Picot: The First 5 Years of Their Journey with Down Syndrome

In this episode we speak with Araon and Julie, parents of 5 year old Elyse, about the lessons learned, the changes seen and the realizations made from diagnosis till now.
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/05/28/141-julie-and-aaron-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.