In this episode we revisit a conversation with our longtime pediatrician, Dr. Ilona Kleiner, who has been with our family since the day Sophia was born and has guided us through Liam’s journey with wisdom, honesty and compassion. Dr. Kleiner shares her perspective on treating children as whole individuals far beyond a diagnoses or statistics and the profound impact that kind of care can have on both medical outcomes and family life.

Together, we talk about navigating the fears that often surround a Down syndrome diagnosis, the importance of preventative medicine and what it means to advocate for our children day by day. Dr. Kleiner also offers practical insights on vaccines, inclusion and supporting children’s mental health by reminding us that every child deserves to be seen, respected and treated with dignity.

This heartfelt conversation is a reminder of the power of compassionate care and our hope that every family finds a physician who sees their child for exactly who they are.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/09/15/192-choosing-a-pediatrician-with-dr-ilona-kleiner/2/

Please follow us on X @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. Also 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.

Today we  sit down with speech-language pathologist and author Janine Tang to talk about her new book "Play Dumb and Sabotage: Mindfully Under-Anticipating the Child’s Needs and Creating Opportunities to Practice Language". Drawing from more than two decades as a therapist and her personal journey as a parent of a child with a brain injury, Jeaneen shares practical strategies parents can use every day to support speech development.

We discuss the challenges families face in accessing quality speech therapy, how to advocate for services and why creating small opportunities for communication can have lasting impact. Jeaneen also opens up about her son’s diagnosis, how it shifted her perspective as both a mother and a professional and the importance of empowering parents to see that they are doing a good job.

Jeaneen fills this conversation with hope, compassion and actionable tools for parents navigating speech development and early intervention. She reminds us that our children can achieve more when we give them space, support and belief in their potential.

Website: https://www.playdumbandsabotage.com

IG: @playdumbandsabotage

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/09/07/191-play-dumb-and-sabotage-with-jeaneen-yang/2/

Please follow us on X @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. Also 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.

It’s World Down Syndrome Day 2025 and we did it! We released an episode on March 21st. Many in our community do so well at preparing for this day every year and we greatly appreciate them but also, here’s to all those that feel like they are always behind or that their ‘to do” list is getting bigger, not smaller. We celebrate you and your loved ones today!

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/03/20/182-wdsd-2025/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

This week 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

This week we have another conversation with filmmakers Olivier and Hilda to discuss their IEP experience featured in their film FORGET ME NOT: INCLUSION IN THE CLASSROOM. These talks not only shows us that we are not alone in this fight, but also gives us some powerful information that we can use in our own IEP meetings.

Documentary 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/2025/03/02/181-olivier-and-hilda-bernier-and-their-iep-experience/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

In this episode we discuss 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Happy Birthday Liam! In this week’s episode we discuss the lessons we have learned over the last 15 years in both education, behavior and societal changes.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/02/24/180-liam-turns-15-what-have-we-learned-in-this-journey/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

In this 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.