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.
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.
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.
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. In this episode we talk about the impact of Alzheimer’s in the Down syndrome community and we discuss some proactive steps that may help to improve the long-term wellness for people with Down syndrome.
If We Knew Then is a podcast and community for parents and caregivers of people with Down syndrome. It's where love meets advocacy and stories inspire change. Together we share experiences, lift each other up and create a world where every child is seen and included.
Our mission is to empower families to create change through advocacy and to remind the world that inclusion is not only possible but essential... for all of us.
When we began, we did not plan to start a movement. We wanted to make sense of what we were learning as parents. Early on, every appointment focused on what Liam might not do, rather than what he could do with support. We looked for voices that offered perspective and encouragement. Finding few, we decided to record our own.
Each episode is structured around a single topic. We have covered medical updates, inclusive education, communication, advocacy in schools, and the transition to adulthood. We approach every conversation as parents asking questions, not experts delivering answers. Over time, the audience has grown into a community that includes families, teachers, and professionals who use the podcast to learn from one another.
Listeners often contact us to say that the podcast helped them during the first days after receiving a diagnosis. Some teachers have written that the interviews helped them adjust classroom practices to better include students with intellectual disabilities. These specific outcomes show the impact that open and factual discussion can have.
Advocacy on our podcast focuses on practical changes. We address how to prepare for Individualized Education Program (IEP) meetings, how to communicate with healthcare providers, and how to navigate social situations that can exclude people with disabilities. We ask each guest to describe what inclusion looks like in measurable terms.
The goal is to replace assumptions with information. For example, speech and occupational therapists have described the importance of early intervention programs backed by research. Self-advocates have discussed how workplace inclusion improves both independence and confidence. Parents have shared how support networks reduce isolation and increase access to accurate resources.
The stories collected through If We Knew Then form a record of how Down syndrome advocacy continues to change. Decades ago, most children with Down syndrome were not included in general education classrooms. Now, federal law and better understanding of differentiated instruction have made inclusion more common. Hearing firsthand accounts of this progress helps new families understand what is possible.
The name If We Knew Then came from a conversation about hindsight. We often thought about what we would have done differently if we had known more in the beginning. We would have asked more questions, pushed sooner for inclusion, and worried less about milestones set by comparison rather than need.
Through the podcast, we continue to learn from others who share that same reflection. Parents speak honestly about uncertainty after diagnosis. Educators explain methods that lead to student progress. Doctors describe how life expectancy and quality of care have improved over the past twenty years. These are concrete facts that replace old fears with knowledge.
We know now that advocacy is most effective when it starts with accurate information and cooperation among families, professionals, and self-advocates. That belief shapes every episode we record.
If We Knew Then is available on major podcast platforms. Each episode is free and open to anyone interested in Down syndrome, inclusive education, or family advocacy. We continue to record from our home in California and produce new episodes several times each month.
Our purpose remains clear: to provide accurate information, document lived experiences, and encourage inclusion in schools and communities. By sharing practical advice and real examples, we aim to make the path easier for families beginning their own journey with Down syndrome.