If We Knew Then - Down Syndrome Podcast

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.

140. Keeping Up with Bertie - An Update with Melissa Kynoch

In this episode we reconnect with Melissa Kynoch as her son Bertie begins primary school in Birmingham, England. You may remember that Melissa and Bertie were featured on the popular BBC Documentary Series ‘Life and Birth’. Among many things, we discuss the impact inclusion has made in Bertie’s life and the family's journey.
Wouldn’t Change A Thing - https://www.wouldntchangeathing.org
Bookworms Day Care: https://www.facebook.com/profile.php?id=100086453783217
Up and Downs Support Group: https://www.facebook.com/upanddownswm
BBC 'Life and Birth’: https://www.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4 
12 Step Fellowship: https://www.na.org 
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/05/06/140-keeping-up-with-bertie/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.

139. Looking Back and Seeing the Effects of a Non Inclusive Environment - Indira Cruz

In this week's episode we have a wonderful conversation with Indira Cruz discussing the impact a non-inclusive environment had on her brother, now 50. By looking back at our past we learn from the injustices and see the consequences they had on generations of people with disabilities. Some of those lessons can be hard. This is one of them. 
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/04/23/139-indira-cruz/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.

138. ’Yes. No. Maybe.’ - Our Entry In The 2023 Easterseals Disability Film Challenge

This episode marks the beginning of the Easterseals Disability Film Challenge’s Awareness Campaign. It’s our 9th film and it’s taken nine years to realize the Awareness Campaign strives to tell our stories to as many people as possible and by doing that, changing the path and narrative of individuals with disabilities. Our film, 'Yes. No. Maybe.' is a teenage love story. We hope you will watch and it makes you smile.
www.YesNoMaybeFilm.com
EDFC Website: https://disabilityfilmchallenge.com
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/04/10/138-yes-no-maybe/2/
 

137. Citizens of the Wold Charter Schools: Christina Aries and Maureen Lamorena-Tatsui

In this episode we celebrate Citizens of the World Charter Schools whose approach to inclusion was a life changing discovery for our family.  We sit down with  Dr. Maureen and Mrs. Aries, Co-principals of CWC, and discuss the importance of inclusion, its impact and why we as parents, if it is what is best for our student, should insist on our child’s right to an inclusive classroom.
CWC Website: www.CWCsilverlake.org
CWC Instagram: https://www.instagram.com/citizensoftheworldla/
CWC Los Angeles FB: https://www.facebook.com/citizensoftheworldLA
CWC Kansas City FB: https://www.facebook.com/cwckansascity
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/03/26/137-cwc/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.

136. World Down Syndrome Day with Dr. Eric Rubenstein and his Co-Researcher Team

Happy World Down Syndrome Day 2023! In celebration of our community, we are sharing a discussion we had this month with Dr. Eric Rubenstein and his co-researcher team. Dr. Eric is an Assistant Professor in the Department of Epidemiology at Boston University and his research team is comprised of six adults with Down syndrome who engage the research process to create their own project. The team is curious about the mental health of people with Down syndrome and designed a research project to explore people’s experiences with mental health issues and how they find support.
Take the survey: https://bostonu.qualtrics.com/jfe/form/SV_bxyp6tWSkJcoU86
The group is also hosting a webinar on Tuesday, March 21 from 12pm-1:30pm EST
Register for the World Down syndrome Day webinar: https://bostonu.zoom.us/webinar/register/WN_BkU7e9D8TO6HPXSRU2gfpg
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/03/19/136-world-down-syndrome-day-with-dr-eric-rubenstein-and-his-co-researcher-team/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.

135. Revisiting with Children’s Hospital Los Angeles Pediatrician Dr. Mona Patel Gera

Dr. Mona is an attending physician in the Department of General Pediatrics at Children’s Hospital Los Angeles and an Associate Professor in the Department of Pediatrics at the Keck School of Medicine of the University of Southern California. She sat down with us to challenge the many medical myths and stereotypes surrounding children with Down syndrome.
Health Supervision Guidelines: https://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Documents/Health_Care_Information_for_Families_of_Children_with_Down_Syndrome.pdf
Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/03/12/135-revisiting-with-childrens-hospital-los-angeles-pediatrician-dr-mona-patel-gera/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.