If We Knew Then - Down Syndrome Podcast

179. Forget Me Not: Inclusion in the Classroom Documentary - Hilda & Olivier Bernier Feb 09, 2025

Today we are joined by Hilda and Olivier, who are documentarians of a fantastic film “Forget Me Not”. This film tells the story of our children’s fight for an equal education and raises the question of inclusion versus segregation. It’s a documentary that is so important to making changes in the lives of individuals with Down syndrome.

Website: https://forgetmenotdocumentary.com

Streaming FREE On tubi: https://tubitv.com/movies/697442/forget-me-not-inclusion-in-the-classroom?utm_campaign=web-sharing

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/09/179-forget-me-not/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.

178. The 2025 DSDN Rockin' Dad Retreat with Ben Hughes Feb 02, 2025

In July 2025, DSDN will host their annual Rockin' Dad Retreat for fathers of children with Down Syndrome to gather from across the country. We are joined again by Ben Hughes to give us all the details of this year’s event and also an update on his own journey.

Retreat Details - WHEN: July 11-12, 2025, WHERE: Hilton San Diego Gaslamp Quarter, San Diego, CA

Registration info: https://www.dsdiagnosisnetwork.org/dad-retreat-registration

Ben’s email: ben@dsdiagnosisnetwork.org

Ben’s Personal Fundraising Page: https://dsdn.networkforgood.com/projects/237847-ben-hughes-s-fundraiser

Get the DSDN App today! https://www.dsdiagnosisnetwork.org/dsdn-app

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/02/178-the-2025-dsdn-rockin-dad-retreat-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.

177. Showing Up For The Challenges - Karen Maezen Miller Jan 26, 2025

Lori recorded this episode in October but what is very apparent is how challenges and the unknown are an everyday thing that helps tell our stories, In this episode Maezen talks about finding our space and our 'me' time.

Karen Maezen Miller’s 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/2025/01/27/177-showing-up-for-the-challenges-karen-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.

176. Revisiting 10,000 Maniacs Founding Member Steven Gustafson 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: https://ifweknewthen701833686.wordpress.com/2025/01/27/176-revisiting-10000-maniacs-founding-member-steven-gustafson/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.

175. Communicating Our Stories with Sid and Vaish Sarathy 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.

174. Advocating For Speech Therapy - Julie Picot 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.

173. The Endless Possibilities of People with Down Syndrome: Revisiting Jake Pratt 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.

172. Happy Mothers Day: We Celebrate You 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.

171. Alzheimer’s Disease In People with Down Syndrome - Dr. Elizabeth Head 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.

170. Celebrating The Life of Carl Erskine with Ted Green 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.

169. The Annual DSDN Retreats with Ben Hughes 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.

168. Liam's 14th Birthday: Sharing Some Insight 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.

167. A Discussion About Using The R-Word with Lynette Louise 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.

166. Finding The Right Supports Without Shame - Julie Picot 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.

165. Picking The Right Pediatrician with Dr. Ilona Kleiner 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.

164. Charlotte and Riley: Not Taking No For An Answer Jan 21, 2024

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.

163. Revisiting Patience In The New Year with Maezen Miller Jan 14, 2024

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.

162. Living In The Moment and Taking the Time to Reflect On Life Oct 22, 2023

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.

161. Down Syndrome Awareness Month 2023: Bringing Awareness to Our Community’s Potential Oct 15, 2023

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.

160. The Inclusive Hub: A Gym For People of All Abilities with Liam Starkey Oct 08, 2023

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.

159. DSALA and DSC2U: Supporting Our Spanish-Speaking Community Oct 01, 2023

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.

158. Best Buddies with Katelyn Quintero Sep 24, 2023

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.

157. Ruby’s Rainbow with Liz Plachta Sep 17, 2023

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.

156. GiGi’s Playhouse with Nancy Gianni Sep 10, 2023

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.

155. Using Your IEP to Make the Most of Middle School Sep 03, 2023

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.

154. Revisiting Our Interview with Megyn Price Aug 27, 2023

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.

153. Revisiting Jad Issa’s Story: A Man with Down Syndrome Raises a Family - An Interview with Sader Issa Aug 20, 2023

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.

152. Revisiting The Canadian Down Syndrome Society’s Project Understood - Training Speech Recognition Technology Aug 13, 2023

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 Aug 06, 2023

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 Jul 30, 2023

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 Jul 23, 2023

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 Jul 16, 2023

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 Jul 09, 2023

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 Jul 01, 2023

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 Jun 26, 2023

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 Jun 19, 2023

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 Jun 12, 2023

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 Jun 04, 2023

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 May 28, 2023

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 May 07, 2023

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 Apr 23, 2023

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 Apr 10, 2023

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 Mar 26, 2023

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 Mar 19, 2023

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 Mar 12, 2023

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.

134. Your Dentistry Questions Answered - Dr. Jill Lasky Mar 05, 2023

Dr. Jill Lasky discusses the importance of Pediatric Dentistry, how to introduce dental care and specifics pertaining to the Down Syndrome community. We also discuss methods and tools for parents who want to support their children in making good dental health habits.

Lasky Pediatric Dental Group: https://www.laskypediatricdental.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/03/05/134-your-dentistry-questions-answered-dr-jill-lasky/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.

133. Liam Turns 13: Let The Teenage Years Begin Feb 19, 2023

This week Liam turns 13. We recorded this episode on Valentine's Day with is fitting because love is the driving force of this family. Becoming a teenager is a milestone we have been looking forward to and we are thankful for all the ups and downs that have gotten us here.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/18/133-liam-turns-13-let-the-teenage-years-begin/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.

132. Black History Month: Revisiting Our Interview with Willie Dawkins Feb 12, 2023

For Black History Month we revisit a phenomenal episode we had with Willie Dawkins. We honor his story and his parents who gave him the foundation of love and support he needed to find his way through an unjust world and the advocates who came before us who fought for equality and laid the groundwork for our fight for inclusion.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/10/132-black-history-month-revisiting-our-interview-with-willie-dawkins/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.

131. The Things We Learn: The Evolution of An Advocate Feb 05, 2023

We talk today about how we learn to do things differently, the way we learn from our past, and how the seemingly smallest memories can hold so much in them, like the little lessons along the way. We also explore the need to accept when it’s easy, and how that can be a challenge in itself.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/02/03/131-the-things-we-learn/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.

130. Michael Sanford: An Advocate for Diverse Casting in Hollywood - Part 2 Jan 29, 2023

This is the second half of a two part interview with casting director Michael Sanford about the work being done to make media more inclusive and diverse. We first met Michael when he cast our son, Liam, in the Lena Dunham movie SHARP STICK. Michael had seen Liam in a film made for the Disability Film Challenge where people with disabilities have a space to tell their own stories in the hopes that more spaces like that will be made in Hollywood.

Disability Film Challenge: https://disabilityfilmchallenge.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/29/michael-sanford-an-advocate-for-diverse-casting-in-hollywood-part-2/2/

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.

129. Michael Sanford: An Advocate for Diverse Casting in Hollywood - Part 1 Jan 22, 2023

This is a two part interview with Hollywood casting director Michael Sanford about the importance of inclusion in everyone's life and the responsibility the film and television industry has to uphold a fabric of diversity that is reflective of our global society.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/22/129-michael-sanford-an-advocate-for-diverse-casting-in-hollywood/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.

128. The Next Generation of Advocacy Jan 16, 2023

In this episode we discuss the hope we have for the future and the positive changes we see in the next generation of Down syndrome advocates.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/16/128-the-next-generation-of-advocacy/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.

127. Revisiting A Loving Kindness Meditation with Paul Denniston Jan 07, 2023

We’ve talked about self-care on this podcast and the importance of parents and caregivers to find the time to take care of themselves. We are so grateful that Paul Denniston has once again gifted us, and our listeners, with a guided meditation. This time Paul will guide us through a wonderful Loving Kindness Meditation to help us with the many struggles we can face when we so often put others before ourselves.

Paul’s Website: https://griefyoga.com

Episode 22 - Paul’s 30 Minute Yoga Nidra Meditation: https://ifweknewthen.podbean.com/e/22-a-meditation-gift-from-paul-denniston/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2023/01/07/127-revisiting-a-loving-kindness-meditation-with-paul-denniston/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.

126. Happy New Year: Revisiting The Practice of The Beginner’s Mind with Maezen Miller Dec 31, 2022

Happy New Year! We hope you are all having a wonderfully relaxing and safe holiday. Today in the spirit of the new year, we revisit an interview we had with Karen Maezen Miller about the practice of The Beginner’s Mind.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/12/31/126-happy-new-year-revisiting-the-practice-of-the-beginners-mind-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.

125. A Season of Hope Dec 19, 2022

In this episode we talk about hope. Losing hope when challenges become overwhelming and finding it again on the other side.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/12/19/125-a-season-of-hope-down-syndrome-advocacy/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.

124. Revisiting with Caroline Bencze-Fernandez Part 2: At Home Tools and Supports Nov 27, 2022

Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 2 we re-air Caroline’s second appearance on the podcast where she dives a little deeper into the aspects of Early Intervention, what tools parents can use at home and how therapies for children with Down syndrome have changed over the years.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/27/124-revisiting-with-caroline-bencze-fernandez-part-2-at-home-tools-and-supports/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.

123. Revisiting with Caroline Bencze-Fernandez Part 1: Early Intervention Nov 20, 2022

Because we get so many questions from new parents, we wanted to revisit a couple of our very early episodes. In this Part 1 we re-air an extremely informative interview with Child Development Specialist, Caroline Bencze-Fernandez where she explains the importance of Early Intervention, how therapies have changed throughout her 30 year career and what parents should know.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/20/123-revisiting-with-caroline-bencze-fernandez-part-1-early-intervention/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.

122. Happy Anniversary: Things We’ve Learned Over 18 Years Nov 08, 2022

It’s our wedding anniversary and we take a minute to reflect on the past 18 years. Happy Anniversary!

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/11/07/122-our-anniversary-episode/

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.

121. Down Syndrome Awareness Month 2022 Oct 28, 2022

In this episode we discuss our journey with awareness. We explore how we are learning to cultivate what awareness means in our lives, the way in which awareness has changed over the years and its impact on our advocacy.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/28/121-down-syndrome-awareness-month-2022/2/

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.

120. The Secret Episode - Living For The Moments Oct 21, 2022

Stephen recorded a solo episode this week, unbeknownst to the family, to express some things that have been on his mind and as a nice surprise to Lori and the kids whenever they come across it. It’s kind of a time capsule episode focused on this present moment and how there is nothing as important as right now.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/21/120-the-secret-episode-living-for-the-moments/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.

119. Walking The Walk, Breaking Down Stereotypes - with Dr. Eric Rubenstein and Kaethe Sigelko Oct 14, 2022

This week we talked to Dr. Eric Rubenstein and one of his co-researchers, Kaethe Sigelko to discuss self advocacy and the importance of including people with Down syndrome in shaping our community.

For everything they ever told you your child would not or could not do - sometimes it takes an example of what is possible to remember who we are and that every child’s life is one of possibility.

Eric’s Website: https://sites.bu.edu/rubenstein

Contact Kaethe: k.sigelko1415@gmail.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/14/119-walking-the-walk-breaking-down-stereotypes-with-dr-eric-rubenstein-and-kaethe-sigelko/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.

118. The Best We’ve Got: The Carl Erskine Story with Ted Green Oct 07, 2022

Documentarian, Ted Green visits with us to discuss his most recent film “The Best We’ve Got: The Carl Erskine Story”. As a teammate and close friend of Jackie Robinson and then as the father of a person with Down syndrome, Carl played a pioneering role in two human-rights movements.

Our guest, Ted Green switched to filmmaking in 2010 after 20 years as a newspaper journalist, and since then he has produced and directed eight documentaries. Other subjects include Holocaust survivor Eva Kor, and Indianapolis’ Crispus Attucks High School.

Website: https://www.carlerskinefilm.com

EPIC Website: http://soindiana.org/EPIC

EPIC Promo (3:30): https://vimeo.com/710911325/b293dfbb38

“The Fan Connection”: https://www.fanconnectionmovie.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/10/06/118-the-carl-erskine-story-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.

117. Having The Patience To Be Where You Are - A Conversation with Karen Maezen Miller Sep 30, 2022

In this week's episode we are joined by 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/2022/09/30/117-patience-with-karen-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.

116. Mother Asana: “The Art and Voice of Autism” with Gina Uricchio Sep 23, 2022

Mother Asana merges the focus of Ally’s art and expression with Gina’s yoga practice and meditation insights. Gina is a devotee to her Spiritual Practice for over 20 years influenced by many practitioners & styles. Her trainings landed her teaching Slow Flow Yoga, YOGA for Cancer & Mindfulness for the Special Parent. Creating Connection is the cornerstone to her parenting & personal style. In her journey as a ‘warrior mom,’ Meditation & Asana has been instrumental in understanding & healing while raising a family with a special needs.

Website: https://www.motherasana.com/

Pre-Order the book: https://www.motherasana.com/shop/the-art-and-voice-of-autism

Instagram: @mother_asana

FaceBook: @motherasana

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/23/mother-asana-the-art-and-voice-of-autism-with-gina-uricchio/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.

115. Functional Nutrition with Dr. Vaish Sarathy Sep 09, 2022

Vaish 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.

Website: https://functionalnutritionforkids.com

Constipation Tool Kit: https://functionalnutritionforkids.com/constipationtoolkit

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/08/115-functional-nutrition-with-dr-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.

114. Liam Goes To Middle School: Leaving The Past Behind Us Sep 02, 2022

We have learned a lot, some harsh realities and beautiful truths. We now move forward with eyes wide open, ready to learn from where we have been, into the unknown of middle school.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/09/02/114-liam-starts-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.

113. Student Led IEPs to Determine Ones Own Path of Self-Advocacy with Ellen Coulston Aug 19, 2022

The discussion on Self Determination in episode 83, developed into an examination of the term “Self Determination” and what it means in the scope of determining ones self and ones path. In this episode with Ellen Coulston we discuss Self Determination as a tool to promote independence, confidence and participation by student led IEP planning, making that student a part of the dialogue instead of a 3rd person participant in a conversation about their life goals.

I’m Determined: https://www.imdetermined.org

LifeCourse: https://www.lifecoursetools.com/

Ellen’s Podcast: ieproadtofreedom.com

Ellen on Twitter: https://twitter.com/EllenRita220

CA Transition Alliance: http://www.catransitionalliance.org/catransitionalliance.aspx

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/08/18/113-student-led-ieps-to-determine-ones-own-path-of-self-advocacy-with-ellen-coulston/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.

112. Seeing The Whole Child: Our Conversation with Licensed Child Psychologist Dr. Beverly Celotta Aug 12, 2022

In this conversation we sit down with Dr. Beverly Celotta. Bev is a retired Licensed Child Psychologist who shares her knowledge about how to set all children up for success.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/08/11/112-dr-beverly-celotta/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.

111. Kicking Down Barriers: Our Conversation with College Kicker Caden Cox Aug 05, 2022

In this episode we sit down with Caden Cox and his parents, Mari and Kevin, to talk about their history making and game changing journey to inclusion. Caden is the first person with Down syndrome to play as well as score in a NCAA/NJCCA College football game.

Caden’s JakeMax Collection: https://www.jakemax.com/collections/cadens-collection

'NEVER, is not in My Vocabulary' College Paper: https://www.dropbox.com/s/vm0d2tjtqs1r5ss/NEVER%2C%20is%20Not%20in%20My%20Vocabulary.pdf?dl=0

Caden’s College Power Point Presentation: https://www.dropbox.com/scl/fi/7jo7jh80mjs9ir7gmko77/Informative-Speech-Bill-of-Rights.pptx?dl=0&rlkey=trfd9vsx23xcenee826r3jv13

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/08/05/111-kicking-down-barriers-our-conversation-with-college-kicker-caden-cox/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.

110. The Future of Research and the Hope on the Horizon with Eric Rubenstein Jul 29, 2022

This week we have a wonderful conversation with Dr. Eric Rubenstein, an Assistant Professor in the Department of Epidemiology at Boston University. We discuss equality and inclusion in research as it pertains to Down syndrome.

Eric’s Website: https://sites.bu.edu/rubenstein/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/29/110-the-future-of-research-and-the-hope-on-the-horizon-with-eric-rubenstein/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.

109. Parenting Is Parenting: A Conversation with Paul and Kerry Daugherty Jul 22, 2022

Today we have an open and candid conversation with the author of ‘An Uncomplicated Life’ Paul Daugherty and his wife Kerry about their approach to early education, college, dating, sex, marriage and lots of other things we are told our kids won’t do. ‘An Uncomplicated Life’ is a book we wish we would have found earlier with the beautiful message of “expecting instead of accepting”. Whether you have a person with Down syndrome in your life or not, this book should be one you read and then share with others.

Paul's Book: https://www.amazon.com/Uncomplicated-Life-Fathers-Exceptional-Daughter/dp/0062359959

Our First Episode with the Daugherty’s (Episode 90): https://ifweknewthen.podbean.com/e/90-an-uncomplicated-life-a-father-s-memoir-of-his-exceptional-daughter-with-paul-and-kerry-daugherty/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/22/109-parenting-is-parenting-a-conversation-with-paul-and-kerry-daugherty/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.

108. Playground of Empathy and Empathable with Micah Kessel Jul 15, 2022

In this episode we find a way to inclusion through empathy. Our conversation with Micah Kessel was an empowering and insightful discussion offering ways to focus our advocacy and to come from a more nurturing and loving place. Micah is the creator of Empathable and Playground of Empathy. These organizations work nationally with world-renowned academics to bridge science, technology, and art to amplify the intersectional experiences of the underserved at your place of business or learning.

Empathable: https://empathable.com

Playground of Empathy: https://empathable.com/playground/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/14/108-playground-of-empathy-micah-kessel/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.

107. Graduating Elementary School: A Culmination of What We Learned Jul 08, 2022

Liam graduated from elementary school, on curriculum, in an inclusive classroom with his peers. We reflect on the moments that led to his accomplishment and what we could have done better if we knew then.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/07/07/107-graduating-elementary-school-a-culmination-of-what-we-learned/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.

106. Zeno Mountain Farm: Telling Stories of Diversity and Inclusion - Ila Halby Jun 24, 2022

It was so nice spending some time with founder Ila Halby to talk about the Zeno Mountain Farm Camps, their feature film “Best Summer Ever” and the power of representation in film. Whether used as a noun or a verb, Zeno stands for inclusion.

Zeno’s Website: https://zenomountainfarm.org

Zeno’s IG: https://www.instagram.com/zenomountainfarm/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/06/23/106-zeno-mountain-farm-telling-stories-of-diversity-and-inclusion-ila-halby/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.

105. The Improvaneer Method: Using Improvisation To Build Skills and Change Perceptions - An interview with Rob Snow Jun 17, 2022

In this episode we are joined by Rob Snow, the founder of The Improvaneer Method. The Improvaneer Method uses improvisation to build skills that will greatly improve social, workplace and lifetime opportunities in those with developmental disabilities. With both in-person and online classes, it is widely assessable and has been a real game changer for many people in our community. We also talk briefly about Rob’s book, ‘What I Should Have Said’ and his ‘Minimize The Mountain’ talk.

Improvaneer Method: https://www.theimprovaneermethod.com/

Rob’s Book ‘What I Should Have Said’: https://www.weneedasign.net/the-book

Minimize The Mountain (YouTube): https://youtu.be/MtZZ_7xZhT0

Stand Up for Downs: https://www.standupfordowns.org

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/06/17/105-the-improvaneer-method-using-improvisation-to-build-skills-and-change-perceptions-an-interview-with-rob-snow/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.

104. Lena Dunham: A Champion For Diversity and Inclusion Jun 10, 2022

This week we are honored to interview actress, writer, producer and director Lena Dunham. Lena cast our son, Liam, in her film SHARP STICK and it was one of the most supportive, inclusive and beautiful experiences we’ve had on this journey. Her set was a model environment for our society and we talk to her about how she developed her advocacy for so many marginalized groups and individuals, what she learned from working with Liam and her future family plans.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/06/08/104-lena-dunham-a-champion-for-diversity-and-inclusion/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.

103. Finding Our Way Through A Tough Conversation - Lynette Louise Jun 03, 2022

*Trigger Warning: The r-word is used in this conversation.

This week we interview 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/2022/06/03/103-finding-our-way-through-a-tough-conversation-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.

102. DSC2U: Preventative and Proactive Means To Staying Healthy with Dr. Brian Skotko May 27, 2022

This week we get to talk to Dr. Brian Skotko again! Dr. Brian has some updates to DSC2U.org to discuss and we also chat about the T21RS International Conference that will be taking place in Long Beach, CA. June 9-12.

Dr. Brian Skotko is the director of the Down Syndrome Program at Massachusetts General Hospital, a Board-certified medical geneticist and has dedicated his professional energies toward children with cognitive and developmental disabilities.

DSC2U: https://www.dsc2u.org

5-min video about DSC2U: https://youtu.be/u-DlSQanj54

Trisomy 21 Research Society International Conference (June 2022): http://www.t21rs.org

More about Dr. Skotko: https://www.massgeneral.org/doctors/19069/brian-skotko

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/05/26/102-dsc2u-preventative-and-proactive-means-to-staying-healthy/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.

101. Learning To Take Things Step By Step: with Michelle & Paul Tesori May 20, 2022

We were so fortunate to get to spend some time with Michelle and Paul Tesori. We met this Dynamic Duo through our good friend, actor Andy Buckley, and it is fitting that this episode is being released on PGA Championship weekend since Paul has been a PGA Tour caddie for nearly 20 years. Inspired by their son Isiah, Michelle and Paul created the Tesori Family Foundation to help support the Down syndrome community. We talk about education frustrations, what the Tesori's are doing to make a change and how we can harness our anger into a motivator to make a change.

The Tesori Foundation: https://tesorifamilyfoundation.org

Robb Scott’s Viral Video: https://www.youtube.com/watch?v=m8sPT6-iGBE

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/05/19/101-learning-to-take-things-step-by-step-with-michelle-paul-tesori/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.

100. Celebrating 100 Episodes May 13, 2022

Well here we are! We’ve learned so much in these two years and one hundred episodes and take this time to reflect on this experience and focus on where we go next.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/05/13/100-celebrating-100-episodes/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.

99. Remembering Your Power: Happy Mother’s Day May 06, 2022

Happy Mother’ Day! We dedicate this Mothers Day episode to celebrating your power and strength.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/05/06/99-remembering-your-power-happy-mothers-day/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.

98. The Easterseals Disability Film Challenge and The Importance of Everyone’s Story Being Told Apr 15, 2022

This week we discuss the details of the 2022 Easterseals Disability Film Challenge. We touch upon how and why we created this year's film, what the challenge has meant to our family in the last eight years and how allowing other's to share their stories is the key to true inclusion.

Our Entry’s Youtube Link: https://youtu.be/O_ENIwMCKls

Our Entry’s Website: www.JustForOneDayFilm.com

All Our Previous Entry's: https://ttmaba.com/dfc

The Festival’s Website: https://disabilityfilmchallenge.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/04/14/98-the-easterseals-disability-film-challenge-and-the-importance-of-everyones-story-being-told/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.

97. Trusting Your Journey and Embracing The Pivot - Karen Maezen Miller Apr 08, 2022

In this episode we sit down with Maezen and discuss the different paths this journey has taken us, the pivot in directions we have chosen, how to trust those choices and allow some ease and embrace the gifts.

Maezen’s Book on Amazon: https://www.amazon.com/Karen-Maezen-Miller/e/B001JP2RQ0/ref=dp_byline_cont_pop_book_1

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/04/07/97-trusting-your-journey-and-embracing-the-pivot-karen-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.

96. The Power Of Words: The Words We’ve Learned and How They Give Us Power Apr 01, 2022

In this episode we talk about some of the language/words we have learned that have had a profound impact on our journey and more specifically our quest for equality in Liam’s education.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/04/01/96-the-power-of-words-the-words-weve-learned-and-how-they-give-us-power/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.

95. Aorta Borealis: Telling His Story Through Music with Jesse Norell Mar 25, 2022

In this episode we talk with Jesse Norell whose daughter’s diagnosis of Down syndrome and a heart condition inspired him to write an album. Using music as a cathartic means to heal and find his way through the unknown, Jesse shares his story in hopes of helping others find their song.

Order a CD: https://jessenorell.com/store

For people in the Minneapolis area, Jesse is playing an album release concert on Friday, April 8, 2022. Tickets are here: https://theparkwaytheater.com/all-events/jesse-norell-and-friends

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/03/24/95-aorta-borealis-telling-his-story-through-music-with-jesse-norell/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.

94. Assuming Intelligence: Changing the Narrative of Down Syndrome with Dr. Vaish Sarathy Mar 18, 2022

Today we are joined by Dr. Vaish Sarathy to discuss her Non-Linear Education method and to explore the positive affects that assuming intelligence has on all students regardless of presumed abilities.

Non-Linear Education: www.functionalnutritionforkids.com/nonlineareducation

Her TEDx talk "Who decides how smart you are'' where she talked about the value of Assuming Intelligence.

Vaish 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.

She comes to Functional Nutrition with a mission to reframe health, cognition and optimal function for children with disabilities. Her perspective is shaped by her non-speaking 14 year old son, who is (in his words) an Autist with Down Syndrome - a published poet, writer, and budding advocate.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/03/18/94-assuming-intelligence-changing-the-narrative-of-down-syndrome-with-dr-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.

93. Willie Dawkins: Desegregation and the Foundational Ingredients in the Fight for Inclusion Mar 11, 2022

In 1969 Willie Dawkins was finishing first grade when his mother received a letter saying he would be transferring into a desegregated school the following year. In this episode we honor his story, his parents who gave him a foundation of love and support he needed to find his way through an unjust world and the advocates who came before us who fought for equality and laid the groundwork for our fight for inclusion.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/03/11/93-desegregation-and-the-foundational-ingredients-in-the-fight-for-inclusion/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.

92. Liam Turns Twelve: A Mother’s Message Feb 24, 2022

This week Lori shares thoughts on Liam’s twelfth birthday.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/24/92-liam-turns-twelve-a-mothers-message/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.

91. Valentine’s Week: Changing Hearts & Minds About Education Feb 17, 2022

This week we talk about our personal experience discussing education and inclusion with someone we love who is of the belief that educating our children is asking 'extra' of the school system. We also talk about our new IEP and a story that demonstrates: it is a change of heart that will change the mind that can change the world.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/17/91-valentines-week-changing-hearts-minds-about-education/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.

90. An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter with Paul and Kerry Daugherty Feb 10, 2022

This week we are joined by Paul and Kerry Daugherty to discuss Paul’s book about his daughter, Jillian. It is a book we wish we would have found earlier with the beautiful message of “expecting instead of accepting”. Whether you have a person with Down syndrome in your life or not, this book should be one you read and then share with others.

Paul's Book: https://www.amazon.com/Uncomplicated-Life-Fathers-Exceptional-Daughter/dp/0062359959

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/10/90-an-uncomplicated-life-a-fathers-memoir-of-his-exceptional-daughter-with-paul-and-kerry-daugherty/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.

89. Inclusion at The Sundance Film Festival Feb 03, 2022

In this week's episode we discuss perceptions and our experience with Lena Dunham's new film, SHARP STICK, which premiered at the Sundance Film Festival last week and starred Liam Saux. We discuss our concerns with Down syndrome representation, the affects of misperceptions and ultimately the overwhelmingly positive and insightful experience the project was to our entire family.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/02/03/89-inclusion-at-the-sundance-film-festival/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.

88. Healing Through Yoga: Transform Loss Into Empowerment with Paul Denniston Jan 27, 2022

We have the privilege of speaking again with our friend Paul Denniston. In this episode we discuss Paul’s new book where he breaks down his practice of healing.

Buy the book: https://www.pauldennistontraining.com/healing-through-yoga

Paul’s Website: https://griefyoga.com

Episode 22 - Paul’s 30 Minute Yoga Nidra Meditation: https://ifweknewthen.podbean.com/e/22-a-meditation-gift-from-paul-denniston/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/01/27/88-healing-through-yoga-transform-loss-into-empowerment-with-paul-denniston/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.

87. Downs & Towns: Our Conversation with Houston Vandergriff Jan 20, 2022

This week we have a wonderful conversation with photographer Houston Vandergriff and his mother Katie. We discuss education, advocacy, focusing on the positives and the importance of finding your passion. Houston has traveled the world and his pictures communicate its beauty in the most breath taking ways.

Houston’s website: https://www.downsandtowns.com/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2022/01/20/87-downs-towns-our-conversation-with-houston-vandergriff/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.

86. Making Changes And A New Beginning Jan 13, 2022

This week we welcome a New Year and a new school. We discuss how the educational system can make us feel and the importance of making a change when we know it’s right. We address the perceptions of failure and how to move forward after feeling broken.

Episode Transcript: https://mcdn.podbean.com/mf/web/qsd29z/86_Making_Changes_And_A_New_Beginning_2bamo1.mp3

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.

85. Happy New Year: The Chromosome Song Dec 30, 2021

The full rendition of the If We Knew Then podcast theme song “Chromosome” by Lori Saux and Stephen Saux.

Arrangement and mixing by Brady Harris.

www.BradyHarrisBand.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/30/85-happy-new-year-the-chromosome-song/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.

84. Happy Everything To Everyone: A Holiday Message Dec 23, 2021

As the year comes to a close, we share a few thoughts on the gifts of the year.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/23/84-happy-everything-to-everyone-a-holiday-message/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.

83. The Self Determination Learning Circle at Club 21 with Kelly Kulzer-Reyes Dec 16, 2021

Today we explore the Self Determination Program in California with Kelly Kulzer-Reyes of Club 21. Eighteen states in the US have similar personalized programs that distribute state funds in a way to insure that people with disabilities have access to appropriate services throughout their lifetime. An extremely informative episode for those who want to have more control of the state services provided for their loved ones.

Club 21: https://clubtwentyone.org

Disability Voices United: https://disabilityvoicesunited.org

Independent Facilitator groups:

https://www.guidelightgroup.org/about-us

https://www.neuronav.org/

https://www.allycs.org/

DDS website on Self Determination

https://www.dds.ca.gov/initiatives/sdp/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/16/83-the-self-determination-learning-circle-at-club-21-with-kelly-kulzer-reyes/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.

82. John’s Crazy Socks - Spreading Happiness with John & Mark Cronin Dec 09, 2021

In this episode we discuss advocacy in action with entrepreneur and advocate John Cronin and his father Mark. Together they have built the company Johns Crazy Socks, with a business model that Fortune 500 companies aspire to achieve. Through highlighting the strengths of others, cultivating dignity and spreading happiness they are making differences in our community and the world.

Website: https://johnscrazysocks.com/

Dance Party link: Online Dance Party with John (johnscrazysocks.com)

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/09/82-johns-crazy-socks-spreading-happiness-with-john-mark-cronin/2/

TEDx Talk on How People with Differing Abilities are Waiting to Help Us: John and Mark X. Cronin Give TEDx Talk on the Power of People with Dif (johnscrazysocks.com)

John Donates $100,000 to the Special Olympics: John's Crazy Socks Donates $100,000 to the Special Olympics (johnscrazysocks.com)

Researcher Publishes Dissertation on Employing People with Differing Abilities at John’s Crazy Socks: St. John’s University Researcher Publishes Dissertation on John’s Craz (johnscrazysocks.com)

John Joins Webinar on Keratoconus: John Cronin Speaks in Webinar on Keratoconus and Down Syndrome (johnscrazysocks.com)

Without the Special Olympics, There is No John’s Crazy Socks: Without the Special Olympics, there is No John's Crazy Socks (johnscrazysocks.com)

Facebook: https://www.facebook.com/johnscrazysocks

Twitter: https://twitter.com/JohnsCrazySocks

LinkedIn: MXC https://www.linkedin.com/in/mxcronin/

LinkedIn: JCS: https://www.linkedin.com/company/11171456/admin/

Instagram: https://www.instagram.com/johnscrazysocks/

YouTube: https://www.youtube.com/c/Johnscrazysocks/

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.

81. USA Skateboarding’s “Skateboarding For All” Initiative with Miki Vuckovich Dec 02, 2021

If all the world were a skate park, celebrating our abilities and individual expression would be a given. In this episode we talk to Miki Vuckovich from USA Skateboarding about their “Skateboarding For All” initiative. The beauty found in the inclusive skating community is one we strive to cultivate in the classroom and the world. You can join them on December 11th for a Virtual Wrap Party which includes members of the U.S. Olympic team and several skateboarding legends.

USA Skateboarding Web site: www.usaskateboarding.com

USA Skateboarding 2021 Wrap Party (tickets and info): https://usaskateboarding.com/blogs/news/meet-the-team-usa-skateboardings-2021-wrap-party

Miki Vuckovich, USA Skateboarding Director Of Development: miki.vuckovich@usaskateboarding.com

Skateboarding For All initiative announcement: https://usaskateboarding.com/blogs/news/usa-skateboardings-inaugural-skateboarding-for-all-event-los-angeles-november-2021

Inaugural Skateboarding For All clinic, Los Angeles (11/6/21): https://youtu.be/hl4aWq7mWRo

USA Skateboarding, Journey To Tokyo documentary (45 min): https://youtu.be/Y5zbqoKlblg

What Is Adaptive Skateboarding? video (3 min): https://youtu.be/rUgWNT14iSg

Adaptive Skateboarding In The Paralympics video (7 min): https://youtu.be/bM3jKgI2lxg

Oscar Loreto, Jr. (USA Skateboarding Board Member and adaptive pro skater): https://www.instagram.com/oscarloretojr/?hl=en

Katherine Beattie (WCMX athlete): https://www.instagram.com/ktbeattie/?hl=en

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/12/02/81-usa-skateboardings-skateboarding-for-all-initiative-with-miki-vuckovich/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.

80. Bertie’s Heart Surgery: Talking About The Scary Stuff with Melissa Kynoch Nov 25, 2021

This week we are grateful to have Melissa Kynoch back with us to tell the story of her son, Bertie’s, heart surgery. It is a very scary experience that about half of all family’s in the Down syndrome community experience. We thank Melissa for opening up to us about the emotions she felt and for sharing all the things she wished she knew then.

12 Step Fellowship: https://www.na.org

Wouldn’t Change A Thing - https://www.wouldntchangeathing.org

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/25/80-berties-heart-surgery-talking-about-the-scary-stuff-with-melissa-kynoch/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.

79. Reaching Our Advocation Milestones As Parents - with Julie Picot Nov 18, 2021

In this episode we revisit Julie Picot and talk about what the past year has held for her family and their journey. We discuss the milestones reached on her advocacy path with her daughter Elyse and what she wish she would have known earlier.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/18/reaching-our-advocation-milestones-as-parents-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.

78. A Son’s Advocacy: Another Conversation with Sader Issa Nov 11, 2021

In this conversation we sit down with Sader Issa to get an update from the past year after graduating from Dentistry school and what his future holds. Being a man raised by a father with Down syndrome, we also discuss the rewards of advocacy and the awareness and change it creates vs. the negativity that can exist when his story is exposed to the many opinions of social media.

Preemptive Love: https://preemptivelove.org

L’Archie International: http://www.larche.org

Our First Episode with Sader: https://ifweknewthen.podbean.com/e/23-raised-by-a-father-with-down-syndrome-our-interview-with-sadar-issa/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/11/78-a-sons-advocacy-another-conversation-with-sader-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.

77. Practicing Gratitude Without Expectations: An Interview with Karen Maezen Miller Nov 04, 2021

November is known as the month of gratitude and there is no one better to talk to about gratitude then our good friend Karen Maezen Miller. Maezen is a Zen Buddhist Priest who consistently gifts us wonderful words of wisdom. Today we discuss the practice of gratitude and how releasing expectations brings us closer to true thankfulness.

Maezen’s website: https://karenmaezenmiller.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/11/04/77-practicing-gratitude-without-expectation-an-interview-with-karen-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.

76. Catching Up with Melissa Kynoch: A Year and a Half Later Oct 28, 2021

October is Down Syndrome Awareness Month and to end the month we revisited with Melissa Kynoch. Melissa is a past guest who may be best known for her appearance on the BBC Documentary Series ‘Life and Birth’. We discussed her experiences of the past 18 months and what changes she would like to see in society regarding the perceptions of people with Down syndrome.

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

Wouldn’t Change A Thing - https://www.wouldntchangeathing.org

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/10/28/76-catching-up-with-melissa-kynoch-a-year-and-a-half-later/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.

75. A Loving Kindness Meditation Gift from Paul Denniston Oct 14, 2021

October is Down Syndrome Awareness Month. We’ve talked about self-care on this podcast and the importance for parents and caregivers to find the time to take care of themselves. We are so grateful that Paul Denniston has once again gifted us, and our listeners, with a guided meditation. This time Paul will guide us through a wonderful Loving Kindness Meditation to help us with the many struggles we can face when we so often put others before ourselves.

Paul’s Website: https://griefyoga.com

Episode 22 - Paul’s 30 Minute Yoga Nidra Meditation: https://ifweknewthen.podbean.com/e/22-a-meditation-gift-from-paul-denniston/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/10/14/75-a-loving-kindness-meditation-gift-from-paul-denniston/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.

74. Creating An Inclusive Superhero Universe: A Conversation with Jack and Caitie Clonan Oct 07, 2021

Cousins, Jack and Caitie, join us to reveal their concept of a Superhero Cinematic Universe where everyone has the courage to unapologetically be themselves. We discuss how their characters will celebrate the hero within and also the importance of inclusion for mental health. Caitie’s brother, Luke, stars as ‘Ultra Luke’ and we talk about their relationship and how she hopes to change the future by changing the perception of people with Down syndrome.

Jack and Caitie’s Website: https://linktr.ee/infiniteultras

Suicide Prevention Lifeline: https://suicidepreventionlifeline.org

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/10/07/74-creating-an-inclusive-super-hero-universe-with-jack-and-caitie-clonan/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.

73. Down Syndrome Awareness Month: Acknowledging Those Who Came Before Us Sep 30, 2021

October is Down Syndrome Awareness Month and in this episode we discuss the true meaning of awareness and advocacy. Many self advocates have blazed a trail for the new generation in our community and we name a few of them so that we know who to look up to when we need encouragement.

Frank Stevens’ speech to Congress (YouTube): https://youtu.be/vtS91Jd5mac

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/30/73-down-syndrome-awareness-month-acknowledging-those-who-came-before-us/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.

72. Gifts of the Journey: A Sibling Conversation with Amy Hyde Sep 23, 2021

In this final episode of our three-part sibling series, we sit down with Sophia and Jake Pratt’s sister, Amy Hyde, to discuss some of the gifts of having a sibling with Down syndrome. We also explore topics including advocacy, emotions and the R-word.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/22/72-gifts-of-the-journey-a-sibling-conversation-with-amy-hyde/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.

71. Fasten Your Seatbelts: A Crash Course on Down Syndrome for Brothers and Sisters Sep 16, 2021

In this second installment of our three-part siblings series, we visit with Dr. Brian Skotko and Sue Levine to talk about the book they wrote entitled, ‘Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters’. This is the first book written exclusively for teens with a brother or sister with Down syndrome and tackles a broad range of their most common issues and concerns.

Book: https://www.amazon.com/Fasten-Your-Seatbelt-Syndrome-Brothers/dp/1890627860

Workshop for siblings: https://siblingslearnaboutdownsyndrome.com

YouTube: https://www.youtube.com/user/downsyndromesibbook

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/16/fasten-your-seatbelts-a-crash-course-on-down-syndrome-for-brothers-and-sisters/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.

70. Insights of a Teenage Sibling: with Sophia Saux Sep 09, 2021

In this first installment of a three part sibling series, we sit down with our 14 year old daughter, Sophia, to talk about her experiences as a sibling of a brother with Down syndrome.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/09/insights-of-a-teenage-sibling-with-sophia-saux/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.

69. Uncertainties About the Return to School? You’re Not Alone. Sep 02, 2021

As we return to school to find a new unknown, we may find ourselves facing familiar challenges and feelings. In this episode we discuss the importance of a support system that reminds us we are never alone.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/09/02/69-uncertainties-about-the-return-to-school-youre-not-alone/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.

68. The Importance of Special Needs Trusts and a Conservatorship: with Enrique Perez Aug 26, 2021

What is the purpose of a Special Needs Trust? What is a Living Will? How do I set up a Conservatorship when my loved one is an adult? How much does all this cost? Attorney and advocate, Enrique Perez, sits down with us to answer all these questions and more on this extremely informative episode for the entire disability community.

Perez Law Group: www.perezlawgrp.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/26/68-the-importance-of-conservatorships-and-a-special-needs-trust-with-enrique-perez/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.

67. The Beginner’s Mind: An Interview with Karen Maezen Miller Aug 19, 2021

We have the honor again of visiting with Zen Buddhist Priest, Karen Maezen Miller, to discuss the Zen term of a “beginner’s mind” which means an open, innocent and non-judging mind, the mind we bring to everything we do when we are beginners.

Maezen’s website: https://karenmaezenmiller.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/17/66-the-beginners-mind-an-interview-with-karen-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.

66. A Conversation About Alzheimer’s with Dr. Brian Skotko Aug 12, 2021

In this episode we visit with Dr. Brian Skotko again and talk about the impact of Alzheimer’s in the Down syndrome community and we discuss some pro-active steps that may help to improve the long-term wellness for people with Down syndrome.

Down Syndrome Brain Train: https://www.downsyndromebraintrain.com

Down Syndrome Clinic: https://www.dsc2u.org

Tar Heel Reader Book Collection: https://tarheelreader.org

Find A Nutritionist Near You: https://www.eatright.org

Dr. Brian’s Book “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters”: https://www.woodbinehouse.com/product/fasten-seatbelt-crash-course-syndrome-brothers-sisters/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/11/66-a-conversation-about-alzheimers-with-dr-brian-skotko/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.

65. The Down Syndrome Resource Foundation, Part 2 with Liv Meriano and Danielle McKinney Aug 05, 2021

This week is part two of our conversation with Liv Meriano and Danielle McKinney, from the Down Syndrome Resource foundation based in British Columbia, Canada. In this episode we continue the discussion on education, supports, inclusion and changing the mindset and approach to supporting students to access the curriculum and reach their potential.

Foundation Website: www.DSRF.org

Baskets of Love: https://www.basketsofloveds.com/

Learn at Home: https://www.dsrf.org/programs-&-resources/learn-at-home-5196/

DS Education International education guidelines: https://workdrive.zohoexternal.com/external/8CkAlci1QBB-Jxfap

The LowDOWN Podcast: https://www.dsrf.org/programs-&-resources/the-lowdown-podcast/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/08/05/65-the-down-syndrome-resource-foundation-part-2-with-liv-meriano-and-danielle-mckinney/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.

64. Changing Our Mind and Approach to Education: Down Syndrome Resource Foundation Jul 29, 2021

In this week’s episode we are joined by Danielle McKinney and Liv Meriano from the Down Syndrome Resource Foundation to talk about educational tools and strategies parents can use at home and implement in their child’s school IEP.

Foundation Website: www.DSRF.org

Baskets of Love: https://www.basketsofloveds.com/

Learn at Home: https://www.dsrf.org/programs-&-resources/learn-at-home-5196/

DS Education International education guidelines: https://workdrive.zohoexternal.com/external/8CkAlci1QBB-Jxfap

The LowDOWN Podcast: https://www.dsrf.org/programs-&-resources/the-lowdown-podcast/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/29/64-the-down-syndrome-resource-foundation/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.

63. Just One Of The Guys: Our Interview with Jake Pratt Jul 22, 2021

In this week’s episode Lori and Stephen visit with Jake Pratt, who with a little support, advocacy and inclusion is living his dreams and changing the narrative.

Jake’s UPS Commercial: https://youtu.be/fw97dqK6uiM

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/22/63-just-one-of-the-guys-our-interview-with-jake-pratt/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.

62. Summer Advocacy: The Challenge Of Letting Go And Taking A Break Jul 15, 2021

In this week’s episode Lori and Stephen discuss the sometimes difficult action of letting Summer just be Summer.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/07/01/62-summer-advocacy/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.

61. Hearts Of Joy International: Our Conversation with Lauren Costabile Jun 24, 2021

In this week’s episode we speak to Lauren Costabile, the founder of Hearts of Joy International, an organization that provides life-saving heart surgery for individuals with Down syndrome all around the world.

Website: www.heartsofjoyinternational.com

Amazon Wishlist: https://www.amazon.com/hz/wishlist/ls/1C1P8TA1C8NBU/ref=nav_wishlist_lists_1?_encoding=UTF8&type=wishlist

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/23/61-hearts-of-joy-international-with-lauren-costabile/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.

60. Downright Discrimination - Changing The Laws To Confirm That Every Life Is Equal Jun 17, 2021

Today we interview Máire, Heidi and Liz about their ‘Downright Discrimination’ legal campaign which fights to change the law of the land and create equality for people with disabilities. Presently, in the U.K., it is illegal to abort a fetus after 24 weeks unless it has Down's syndrome. A baby with Down syndrome can be aborted up to birth. We examine the effect this inequality has on our community by creating separation and discrimination that follows us through life. We also talk about ways we can support the cause of changing the laws.

Give to the campaign: https://www.crowdjustice.com/case/downrightdiscrimination/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/17/60-downright-discrimination-changing-the-laws-to-confirm-that-every-life-is-equal/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.

59. Education, Adolescence and Advocacy: A Community Conversation with Mary Cole Jun 10, 2021

Today we have a ‘Community Conversation’ with advocate Mary Cole discussing her inspiring experience with inclusion. Mary lives in Cambridge, England and has a 14 year old son with Down syndrome named Ben.

Ben’s Nursery: https://www.colourboxmontessori.co.uk/

Online Session On Puberty: https://www.downs-syndrome.org.uk/our-work/services-projects/training/

Email 'Wouldn't Change A Thing' at WCATbook@gmail.com for this book: https://www.wouldntchangeathing.org/product/wcat-book-by-celebrate-t21/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/10/59-education-adolescence-and-advocacy-a-community-conversation-with-mary-cole/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.

58. COVID-19, Vaccinations and Picking Up Where We Left Off on the Road to Inclusion with Dr. Brian Skotko Jun 04, 2021

In this week’s episode Dr. Brian Skotko shares the most up to date information surrounding the effects of COVID-19 on individuals with Down syndrome. We discuss the importance, safety and science of the vaccine along with tools to help with the process. As we enter back into the world, post-pandemic, the importance of inclusion in society continues along with so much more.

Down Syndrome Clinic to You: www.dsc2u.org

T21 Research Society: https://www.t21rs.org

COVID-19 Fact Sheet: https://docs.google.com/document/d/1rTAe4CVSGc8g63LMiTZftecZb-qHJbRdurgpvoRiyBg/edit?usp=sharing

Information for the employer and the employee: https://yournextstar.com/

Always Health Care: https://dsc2u.org/insurers

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/06/04/811/2/

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.

57. Revisiting The Story of Chris Nikic: Becoming an IRONMAN May 28, 2021

In this week’s episode we revisit one of our earlier conversations. We had the honor of talking to Chris Nikic and his parents, Nik and Patty last summer. In November Chris became the first person with Down syndrome to complete an IRONMAN. We discuss their 1% philosophy and how people with Down Syndrome can do more than ever expected if given the right tools and time.

Chris's Website: https://chrisnikic.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/27/57-revisiting-the-story-of-chris-nikic-becoming-an-ironman/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.

56. My Twin Brother Has Down Syndrome: Our Community Conversation with Julia Toronczak May 20, 2021

This week we talk to Julia Toronczak about her experiences and the lessons she’s learned by growing up with her twin brother Michael, who has Down syndrome. We focus on inclusion and equity in our community and beyond.

Beyond The Waves Blog: https://www.beyondthewavesblog.com

Beyond The Waves Podcast: https://www.beyondthewavesblog.com/podcast

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/20/56-my-twin-brother-has-down-syndrome-our-conversation-with-julia-toronczak/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.

55. Coming Down The Mountain, Part 2: Why This Movie is so Important - An Interview with Director Julia Anne Robinson May 13, 2021

Executive Director of ‘Bridgerton’, Julia Anne Robinson, joins us to discuss a film she directed in 2007 called ‘Coming Down The Mountain’ and starring Tommy Jessop and Nicholas Hoult. We breakdown this film that changed our lives and told some truths about the journey that rarely get talked about.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/12/55-coming-down-the-mountain-part-2-why-this-movie-is-so-important-an-interview-with-director-julia-anna-robinson/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.

54. Mother (noun): An Ultimate Example of Its Kind - Our Mother’s Day Message May 06, 2021

Happy Mother’s Day! Sunday, May 9, 2021 is Mother’s Day for our Canadian, Australian & American listeners. Mothering Sunday in the UK was back in March and in Mexico, Mothers are celebrated every year on May 10th. Wherever you are, whomever you are and however you celebrate… this episode is for all the Mothers of the world.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/05/06/54-mother-noun-an-ultimate-example-of-its-kind-our-mothers-day-message/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.

53. Discussing Infertility and a Down Syndrome Diagnosis with Natalie Spiteri Apr 29, 2021

In this episode, Physical Therapist, Natalie Spiteri shares her personal journey through infertility, the impact of a diagnosis of Down syndrome and the yearning for the life she imagined beyond what she was told.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/04/29/53-discussing-infertility-and-a-down-syndrome-diagnosis-with-natalie-spiteri/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.

52. A Community Conversation with Megyn Price: Celebrating Uncle Bill Apr 22, 2021

This week we are joined by 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/2021/04/22/52-a-conversation-with-megyn-price-celebrating-uncle-bill/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.

51. Eleven Years With Liam: Celebrating Another Trip Around The Sun Apr 16, 2021

This year Liam turned 11 and in this episode we reflect where we started, what we've learned and where we are. Let's celebrate... always celebrate.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/04/16/51-eleven-years-with-liam-celebrating-another-trip-around-the-sun/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.

50. Acknowledging and Dismantling Fear’s Presence In Our Lives: An Interview with Karen Maezen Miller Apr 08, 2021

Another beautiful conversation with Zen Buddhist Priest Karen Maezen Miller. We all have fears. What if we could see what is at the root of these fears, acknowledge and deconstruct them and then continue forward free from those fears.

Her 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/2021/04/08/50-acknowledging-and-dismantling-fears-presence-in-our-lives-an-interview-with-karen-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.

49. Discussing Health and Inclusion with Pediatrician Dr. Mona Patel Gera Mar 25, 2021

An enlightening conversation with Dr. Mona Patel Gera to answer the questions parents of children with Down syndrome often have.

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/2021/03/25/49-discussing-health-and-inclusion-with-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.

48. World Down Syndrome Day: The Path To Finding Our Celebration Mar 18, 2021

March 21st is World Down Syndrome Day and we discuss our personal journey to find our celebration and what it means to us.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/16/48-world-down-syndrome-day-the-path-to-finding-our-celebration/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.

47. What Do We Do When Faced with Challenges and Negativity? An Interview with Karen Maezen Miller Mar 11, 2021

As parents, we all find ourselves dealing with confusing emotions and challenges from time to time. In this conversation, Zen Buddhist Priest Karen Maezen Miller, gives us some guidance to help us deal with the negative.

Her 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/2021/03/11/47-what-do-we-do-when-faced-with-challenges-and-negativity-an-interview-with-karen-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.

46. Coming Down The Mountain: Our Interview with Julie Anne Robinson Mar 04, 2021

Our conversation with Executive Producer and Director of ‘Bridgerton’, Julie Anne Robinson about the film ‘Coming Down The Mountain’ and the importance of inclusion in media.

‘Coming Down The Mountain’ on Prime Video: https://www.amazon.com/gp/video/detail/B082P67X6D/ref=atv_dp_share_cu_r

Frostig School: https://frostigschool.org

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/03/03/46-coming-down-the-mountain-our-interview-with-julie-anne-robinson/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.

45. Speech Therapy with Kerri Wake of McRory Pediatrics Feb 25, 2021

Speech Pathologist, Kerri Wake, joins us to talk about communication, supportive tools parents can provide their children and the pathways to receiving speech therapy in the school setting.

The McRory Pediatrics Website: https://www.mcrorypediatrics.com

The Hanen Centre: http://www.hanen.org/Home.aspx

Early Milestone List: https://speechhearing.columbian.gwu.edu/sites/g/files/zaxdzs1996/f/downloads/Milestonesguide.pdf

Article on the benefits of AAC (speech generating devices): https://digitalcommons.unl.edu/cgi/viewcontent.cgi?article=1088&context=specedfacpub

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/25/45-speech-therapy-with-kerri-wake-of-mcrory-pediatrics/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.

44. Looking Back At A Decade: Liam Turns 10 Feb 18, 2021

Stephen and Lori discuss the process of acceptance, the importance of communication and how to take time for yourself. Originally set for release a year ago, this episode celebrates Liam's 10th birthday and all the accomplishments and lessons learned over a wonderful decade.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/18/44-looking-back-at-a-decade-liam-turns-10/2/

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.

43. Occupational Therapy with Erin Stanford of McRory Pediatrics - Part 2 Feb 11, 2021

Occupational Therapist, Erin Stanford from McRory Pediatrics, visits us again for Part 2 of our OT discussion. This week we concentrate on behavior and what information parents should have to provide the best supports for their child.

The McRory Pediatrics Website: https://www.mcrorypediatrics.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/08/43-occupational-therapy-erin-stanford-of-mcrory-pediatrics-part-2/2/

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.

42. Occupational Therapy with Erin Stanford of McRory Pediatrics - Part 1 Feb 04, 2021

Occupational Therapist at McRory Pediatrics, Erin Stanford, visits us to discuss at home and at school OT and helps us more clearly define the overlap of this therapy with Physical Therapy, Speech and Behavior Therapies.

The McRory Pediatrics Website: https://www.mcrorypediatrics.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/02/04/42-occupational-therapy-erin-stanford-of-mcrory-pediatrics-part-1/2/

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.

41. Behavior: A Conversation with Kyle Davis of McRory Pediatrics Jan 28, 2021

Clinical Supervisor of Behavioral Services at McRoryPediatrics, Kyle Davis, visits us to discuss behavioral issues at home and at school. He also answers questions about when, how and why behaviors need to be addressed.

The McRory Pediatrics Website: https://www.mcrorypediatrics.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/28/41-behavior-a-conversation-with-kyle-davis-of-mcrory-pediatrics/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.

40. Discussing Supports with Nikki McRory of McRory Pediatrics Jan 21, 2021

Nikki McRory is the founder of McRory Pediatrics and in this episode Nikki gives us an insightful look at the different therapies that can help support your child in reaching their potential.

The McRory Pediatrics Website: https://www.mcrorypediatrics.com

The Hanen Centre: http://www.hanen.org/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/21/40-discussing-supports-with-nikki-mcrory-of-mcrory-pediatrics/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.

39. Our Community Conversation with Steven Gustafson of 10,000 Maniacs Jan 15, 2021

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.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/15/39-our-interview-with-steven-gustafson-from-10000-maniacs/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.

38. Moving Into A New Year One Moment At A Time Jan 06, 2021

In this episode Stephen and Lori discuss facing some of the difficulties of 2020 and how to move onto a fresh new year in a positive way.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2021/01/06/38-moving-into-a-new-year-one-moment-at-a-time/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.

37. Our Community’s Response To Emmerdale’s Negative Storyline About Down Syndrome - Cristina Bowman Dec 05, 2020

In this episode we talk with Cristina Bowman of Diff-Ability about the British soap opera Emmerdale and it’s recent storyline which depicts a couple having an abortion because their baby has Down syndrome.

Petition against Emmerdale: https://www.change.org/p/itv-bin-emmerdale-s-prejudiced-storyline-about-down-s-syndrome?recruited_by_id=2f3349b0-f96d-11e5-80fd-c1f380c9ade0

DIff-Ability: https://www.diffability.co.uk

10% Videos: https://www.youtube.com/playlist?list=PLzOTYSYK2uvr96j-WowLKrxwDG-u9EsRx

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/12/05/37-our-communitys-response-to-emmerdales-negative-storyline-about-down-syndrome-with-cristina-bowman/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.

36. Giving Everyone Access to a Down Syndrome Specialty Clinic with DSC2U - Dr. Brian Skotko Nov 25, 2020

We are thankful to have Dr. Brian Skotko on today’s episode. Dr. Brian is the director of the Down Syndrome Program at Massachusetts General Hospital, a Board-certified medical geneticist and has dedicated his professional energies toward children with cognitive and developmental disabilities. Today we talk about his new online clinic, DSC2U, the importance of inclusion and how we as a community can help the medical profession improve their delivery of a Down syndrome diagnosis.

DSC2U: https://dsc2u.org

LUMIND IDSC FOUNDATION: www.lumindidsc.org

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/25/36-giving-everyone-access-to-a-down-syndrome-specialty-clinic-with-dsc2u-dr-brian-skotko/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.

35. Building a Realistic Approach to a Healthy Dental Routine - Dr. Jill Lasky Nov 19, 2020

In our second interview with Dr. Jill we discuss the methods and tools for parents who want to support their children in making good dental health habits.

Lasky Pediatric Dental Group: https://www.laskypediatricdental.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/19/35-creating-a-realistic-approach-to-a-healthy-dental-routine-dr-jill-lasky/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.

34. How To Use The Summertime To Your Advantage Nov 16, 2020

The summer is a time to play and relax but if you use it as a time to front load for the coming school year, as well, it can be that academic advantage you have been looking for.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/16/34-how-to-use-the-summertime-to-your-advantage/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.

33. Our Congratulations Message to New Parents Nov 13, 2020

We originally created this podcast to support parents of children with Down syndrome and this episode is directed specifically to new parents who have just recently received their child’s diagnosis. Our message is of hope and possibility in a world which often offers very little.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/13/33-our-congratulations-message-to-new-parents/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.

32. Changing Our World - Chris Nikic’s 1% Philosophy Nov 05, 2020

Chris joins us again with his parents, Nik and Patty to discuss how they have changed their approach to learning and how that has prepared Chris to do things no person with Down syndrome has ever done before.

Chris’s Website: https://chrisnikic.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/11/05/32-changing-our-world-chris-nikics-1-philosophy/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.

31. Using The Arts To Tell Your Story - A Conversation with Nic Novicki Oct 29, 2020

Nic joins us again to talk about the Easterseals Disability Film Challenge and letting your voice be heard through the arts.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/29/31-using-the-arts-to-tell-your-story-a-conversation-with-nic-novicki/2/

The Easterseals Disability Film Challenge: https://disabilityfilmchallenge.com

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.

30. Down Syndrome Awareness Month: Working Together To Change Perceptions Oct 22, 2020

In honor of Down Syndrome Awareness Month we discuss our part, as a community, in changing the perceptions of Down syndrome through our thoughts and words. We also look back on some lessons we have learned from past guests.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/22/30-down-syndrome-awareness-month-working-together-to-change-perceptions/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.

29. Insights Into Our First COVID-19 IEP Session Oct 15, 2020

We just had our first Zoom IEP session since the pandemic started and we have found several new things that parents should be aware of. We also further discuss ways to prepare for these meetings and touch on questions every parent should ask their IEP team.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/15/29-insights-into-our-first-covid-19-iep-session/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.

28. A Story of Inclusion with Eleanor Baggaley – ‘Ava the Mermaid’ Oct 08, 2020

Our conversation with author, wife, mother of three and Down syndrome advocate, Eleanor Baggaley. We discuss inclusion and her children’s books, particularly ‘Eva the Mermaid’. Eleanor also shares about her work with the organization Positive About Down Syndrome and some of her future plans of advocacy in the community.

Eleanor’s Website: https://www.eleanorbaggaley.com/shop

Positive About Down Syndrome: https://positiveaboutdownsyndrome.co.uk

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/10/08/28-a-story-of-inclusion-with-eleanor-baggaley-author-of-ava-the-mermaid/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.

27. Our IEP Process - Some Things We Have Learned Oct 01, 2020

IEP's can be very overwhelming especially when you feel like you don't have all the information that you want to have. In this episode we share some of the things we have learned to be helpful during this sometimes stressful process and ways to advocate for your child while still keeping your peace.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/28/27-our-iep-process-somethings-we-have-learned/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.

26. PALS Programs - A Deeper Conversation About Down Syndrome Sep 24, 2020

Our second interview with members of the PALS Programs. We talk about how the PALS Programs is planning for future camps and some of the more personal experiences the founders of the organization have with Down syndrome. Joining us is Executive Director, Jenni Newbury Ross and her mother Robyn and brother Jason. We were also joined by Congratulations Project Associate, Grace Wahle and Communications Coordinator, Colton Davies.

PALS Program: https://www.palsprograms.org

Congratulations Project: https://www.congratulationsproject.org

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/24/26-pals-programs-a-deeper-conversation-about-down-syndrome/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website 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.

25. A Right to Celebrate - When the Medical Profession Steals the Joy of New Parents - Rachel Mewes Sep 17, 2020

Our second interview with Rachel Mewes. Rachel is a contributing editor to Making Chromosomes Count, the Down syndrome community newspaper. She opens up on her not so uncommon birth story and the prejudices she found in the medical profession.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/17/25-a-right-to-celebrate-when-the-medical-profession-steals-the-joy-of-new-parents-rachel-mewes/2/

Making Chromosomes Count: http://makingchromosomescount.co.uk

Making Chromosomes Count on Twitter: https://twitter.com/ChromosomesNews

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.

24. The Importance of Disability Inclusion in Film - Nic Novicki Sep 11, 2020

Comedian, actor, producer and disability advocate Nic Novicki joins us to talk about the Easterseals Disability Film Challenge and the importance of disability inclusion in film.

Film Challenge Website: https://disabilityfilmchallenge.com

Our 2020 EDFC entry: https://youtu.be/WiX-rt51szo

All the challenge’s films on YouTube: https://www.youtube.com/playlist?list=PLOhZ4i5Tnk3iq44Tzn03rBMOcr0bqFrnV

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/11/24-the-importance-of-disability-inclusion-in-film-nic-novicki/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.

23. Raised by a Father with Down Syndrome - Our Community Conversation with Sader Issa Sep 03, 2020

Our enlightening and inspiring interview with Sader Issa. As parents we are always told what our children will never do. What if those limits were not part of the conversation?

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/09/03/23-raised-by-a-father-with-down-syndrome-our-interview-with-sadar-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.

22. A Meditation Gift from Paul Denniston - 30 Minute Yoga Nidra Guided Meditation Aug 27, 2020

Paul Denniston has gifted us a 30 minute Yoga Nidra Guided Meditation. Enjoy.

Paul’s Website: https://griefyoga.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/27/22-a-meditation-gift-from-paul-denniston/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.

21. A Conversation About Healing and Self Care with Paul Denniston Aug 27, 2020

Paul Denniston discusses how we can all heal through meditation and his Grief Yoga.

Paul’s Website: https://griefyoga.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/20/21-a-conversation-about-healing-and-self-care-with-paul-denniston/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.

20. A New School Year: COVID-19, IEPs and Supports - Georgianna Junco-Kelman Aug 11, 2020

Another informative talk with attorney Georgianna Junco-Kelman. What do parents need to know heading into a new school year amidst COVID-19?

Georgianna's Website: http://www.losangelesspecialedattorney.com

CA Special Education Guidelines for COVID-19: https://www.cde.ca.gov/ls/he/hn/specialedcovid19guidance.asp

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/11/20-a-new-school-year-covid19-ieps-supports-georgianna-junco-kelman/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website 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.

19. PALS Programs - Congratulations Project Aug 06, 2020

Our interview with members of the PALS Programs. We talk about the organization and specifically their Congratulations Project. Joining us is Co-founder and Executive Director, Jenni Newbury Ross and her mother and brother, Robyn and Jason. We were also joined by Congratulations Project Associate, Grace Wahle and Communications Coordinator, Colton Davies.

Congratulations Project: https://www.congratulationsproject.org

PALS Program: https://www.palsprograms.org

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/08/06/19-pals-programs-congratulations-project/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website 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.

18. Project Understood - Part 2 - Two Perspectives of Down Syndrome - Ed Casagrande and Matt MacNeil Jul 23, 2020

Our second interview with Ed Casagrande and Matt MacNeil 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

CDSS "Down Syndrome Answers" Initiative: https://cdss.ca/down-syndrome-answers/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/07/23/18-project-understood-part-2-two-perspectives-of-down-syndrome-ed-casagrande-and-matt-macneil/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.

17. Creating a Positive Dental Health Relationship - Dr. Jill Lasky Jul 16, 2020

Dr. Jill Lasky discusses the importance of Pediatric Dentistry, how to introduce dental care and specifics pertaining to the Down Syndrome community.

Lasky Pediatric Dental Group: https://www.laskypediatricdental.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/07/16/17-creating-a-positive-dental-health-relationship-dr-jill-lasky/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.

16. Pushing The Limits - Chris Nikic’s Road To IRONMAN Jul 09, 2020

Interview with Chris Nikic and his parents, Nik and Patty. Chris is the first person with Down syndrome to complete a half IRONMAN and is training to attempt the full 140.6 mile course in November. We discuss how people with Down Syndrome can do more than ever expected if given the right tools and time.

Chris's Website: https://chrisnikic.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/07/07/16-pushing-the-limits-chris-nikics-road-to-ironman/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.

15. Project Understood - Part 1 - Our Community Conversation with Ed Casagrande and Matt MacNeil Jul 02, 2020

Interview with Ed Casagrande and Matt MacNeil 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

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/30/15-project-understood-ed-casagrande-and-matt-macneil-the-canadian-down-syndrome-society/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.

14. An Honest Community Conversation with Julie Picot Jun 25, 2020

Our second interview with Julie Picot, a mother of a child with Down Syndrome, and some of the challenges she has faced regarding stereotypes and preconceived notions of her child's disability.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/24/14-an-honest-conversation-interview-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.

13. Early Intervention - At Home Tools and Supports - Caroline Bencze-Fernandez Jun 18, 2020

Interview with Child Development Specialist, Caroline Bencze-Fernandez. In this second appearance on the podcast, Caroline dives a little deeper into the aspects of Early Intervention, what tools parents can use at home and how therapies for children with Down Syndrome have changed over the years.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/17/13-early-intervention-at-home-tools-and-supports-caroline-bencze-fernandez/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.

12. Our Interview with Melissa Kynoch - Part 2 Jun 11, 2020

An interview with Melissa Kynoch, known by many for being on the BBC documentary LIFE AND BIRTH along with her sons Dei and Bertie.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/11/12-our-interview-with-melissa-kynoch-part-2/2/

BBC 'Life and Birth: https://www.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4

Wouldn’t Change A Thing:Book- https://www.wouldntchangeathing.org/product/wcat-book-by-celebrate-t21/ FaceBook Page- https://www.facebook.com/wouldntchangeathingdotorg/ Twitter- https://twitter.com/Wouldntchangea1 Website- https://www.wouldntchangeathing.org Email: WCATbook@gmail.com

12 Step Fellowship: https://www.na.org

Disability Film Challenge: https://disabilityfilmchallenge.com

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.

11. The Responsibility and Power of Words on Social Media - Rachel Mewes Jun 02, 2020

Our Interview with Rachel Mewes to discuss her interactions with Twitter and their reluctance to combat hate speech toward people with Down Syndrome.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/06/02/11-the-responsibility-and-power-of-words-on-social-media-interview-with-rachel-mewes/2/

Making Chromosomes Count: http://makingchromosomescount.co.uk

Making Chromosomes Count on Twitter: https://twitter.com/ChromosomesNews

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.

10. Our Interview with Melissa Kynoch - Part 1 May 28, 2020

An interview with Melissa Kynoch, known by many for being on the BBC documentary LIFE AND BIRTH along with her sons Dei and Bertie.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/27/10-our-interview-with-melissa-kynoch-part-1/2/

BBC 'Life and Birth: https://www.bbc.co.uk/iplayer/episode/m000j6v0/life-and-birth-series-1-episode-4

Makaton: https://wetalkmakaton.org

The Makaton Charity on Twitter: https://twitter.com/MakatonCharity

Makaton with Lucinda on Twitter: https://twitter.com/makatonlucinda

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.

9. Sibling Advocacy - Interview with Sophia Saux May 22, 2020

An interview with our daughter Sophia to discuss her experiences of having a brother with Down Syndrome.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/21/9-sibling-advocacy-interview-with-sophia-saux/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.

8. Early Intervention - Interview with Caroline Bencze-Fernandez May 14, 2020

Interview with Child Development Specialist, Caroline Bencze-Fernandez. She explains the importance of Early Intervention, how therapies have changed throughout her 30 year career and what parents should know.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/14/8-early-intervention-interview-with-caroline-bencze-fernandez/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.

7. Prenatal Care and Advocacy - Interview with Julie Picot May 07, 2020

Interview with Julie Picot discussing her birth story, some of the misinformation she encountered and how she dealt with the post diagnosis fears.

Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/05/05/7-prenatal-care-and-advocacy-interview-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.

6. Managing The Stresses - The Emotional Parts of Special Needs Parenting Apr 30, 2020

This episode focuses on a sometimes challenging aspect of parenting a child with Down Syndrome. The emotional part of dealing with IEPs, assessments and evaluations that seem to happen right around our children's birthday celebrations. We discuss how we managed these stresses and how we maybe would have done some things differently.

Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/30/ep-6-managing-the-stresses/3/

https://www.IfWeKnewThen.com

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.

5. Preparing For Your IEP - What We Wish We Knew Then Apr 23, 2020

In this episode we discuss preparations and expectations of IEP meetings, what we wish we would have known years ago and the advantages of having an advocate or attorney by your side.

Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/24/5-preparing-for-your-iep/3/

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.

Introduction - Our Down Syndrome Advocacy Story Apr 17, 2020

Hello and welcome to the If We Knew Then Podcast. We are parents of two children and one of them has Down Syndrome, Liam. 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 honest and useful conversations about supports, therapies, education and society as it pertains to Down Syndrome parenting.

Full Episode Transcript:Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/23/introduction-our-down-syndrome-advocacy-story/

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.

4. In-School Physical Therapy - Down Syndrome - Natalie Spiteri Apr 12, 2020

PT in School. Qualifying for services and what to expect with a child with Down Syndrome.

Interview with Pediatric Physical Therapist Natalie Spiteri.

Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/24/4-in-school-physical-therapy-natalie-spiteri/3/

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.

3. Early Intervention Physical Therapy - Down Syndrome - Natalie Spiteri Apr 12, 2020

Early Intervention PT. What is it? How to get it? What to expect and how can parents of children with Down Syndrome use it to its fullest.

Interview with Pediatric Physical Therapist Natalie Spiteri.

Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/24/3-early-intervention-physical-therapy-natalie-spiteri/3/

Gross Motor Skills for Children With Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome) https://www.amazon.com/dp/1606130099/ref=cm_sw_r_cp_api_i_YYaNEb5AEFWZ3

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.

2. All That Annual Stuff - IEP and Assessments Apr 12, 2020

Dealing with IEP's and Assessments that seem to happen around our children’s birthdays. Talking through the process of these events in our lives and how they effect all IEP families. Not just those associated with Down Syndrome.

Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/23/2-all-that-annual-stuff-iep-and-assessments/3/

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.

1. COVID-19 and IEPs - Special Episode with Georgianna Junco-Kelman Apr 12, 2020

What should we do at this time? Are IEP's happening? What should we expect? How does this impact next school year?

We feel fortunate that Liam's Elementary School Team is doing their best to support us in helping Liam access his schoolwork. We know that this is not always the case and that parents are having a lot of questions. We hope this helps to answer some of them. Thank you to Georgianna and the knowledge she shares in this episode.

Special Guest Georgianna Junco-Kelman of https://www.SpecialKidsAttorney.com

Contact your Senator: https://www.senate.gov/general/contact_information/senators_cfm.cfm

Contact your Representative: https://www.house.gov/representatives

Full Episode Transcript: https://ifweknewthen701833686.wordpress.com/2020/04/23/1-covid-19-and-ieps-special-episode-with-georgianna-junco-kelman/3/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website 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.

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