If We Knew Then - Down Syndrome Podcast

When schools treat accommodations like a gift instead of a legal right, students with disabilities are the ones who pay the price. In this episode, we share our firsthand experiences navigating our son's high school IEP. From unimplemented accommodations to misplaced assessments and the constant reminder that equity isn’t optional.

We unpack what it really means to “access the curriculum,” how IDEA protects that access and why fami...

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 a...

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 speec...

In this episode, we discuss the challenges of a new school year and how we advocate to create a foundation of support for Liam, with the intentions of creating a narrative of inclusion.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/08/30/190-advocating-through-the-challenges-of-a-new-school-year/2/

Please follow us on X @ifweknewthenPOD, you can drop us a line on our ...

In this episode Stephen and Lori sit down on a quiet summer morning to reflect on the season of transitions, both for their family and for their son Liam, who just graduated middle school. From the stillness of summer mornings to the in-between spaces of growth, they talk about what it means to be present during times of change, the challenges and beauty of navigating education with a child who learns differently and ...

Every year we face the stresses of annual appointments and assessments. Today we talk about game plans and strategies to help prepare for them.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/05/26/188-preparing-for-annual-appointments/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...

Happy Mother’s Day to all the mothers in this beautiful Down syndrome community. You are a force and we thank and celebrate you.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2025/05/11/187-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. Y...

This week we are revisiting our interview with Melissa Kynoch, known by many for being featured on the BBC documentary LIFE AND BIRTH. Millions of people have had a chance to watch her positive attitude in the face of her son Bertie's Down syndrome diagnosis. Now, five years later, the docu-series is available in the United States on Amazon Prime.

Season 1, Episode 6: https://www.amazon.com/gp/video/detail/B09LCDLPFV/ref=atv_dp_sha...

In this episode we discuss the need and power for us to cultivate self pride and worth within the disability community. In doing so, we nullify the damaging words and opinions of those who wish to label and minimize individuals with disabilities or anyone for that matter.

Episode Transcript: 

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.If...

Today we are joined again by Mrs. Christina Aries, the Director of Adult Development at Citizens of the World Charter Schools for the second part of our discussion about brain development in the adolescent years.

Episode Transcript:

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comment...

Today we are joined by Mrs. Christina Aries, the Director of Adult Development at Citizens of the World Charter Schools for a two-part discussion about brain development in the adolescent years.

Episode Transcript: 

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join o...

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/2025/03/20/1...

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...

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 @ifweknewthenPO...

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 F...

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-registratio...

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

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/

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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 syn...