Show Notes

In this conversation, Mark interviews David Tillman, a dedicated father of a son with Fragile X syndrome. David shares his journey as a parent, the challenges and joys of raising Miles, and the importance of community support. They discuss the impact of Fragile X syndrome on Miles' life, the significance of music and arts in education, and the need for advocacy in the disability community. David emphasizes the value of patience, understanding, and connection in navigating the complexities of raising a child with special needs.

takeaways

• David Tillman emphasizes the importance of dad representation in discussions about parenting children with special needs.
• Fragile X syndrome presents unique challenges, but also opportunities for connection and joy.
• Community support is crucial for families navigating disabilities.
• Music and arts can play a significant role in the development of children with special needs.
• Patience and understanding are key in helping children with disabilities thrive in social situations.
• The Fragile X community provides invaluable resources and connections for families.
• Social media can help families connect with others facing similar challenges.
• Advocacy is essential for ensuring that the needs of children with disabilities are met.
• Preparing for the future involves teaching independence and life skills from an early age.
• Every family’s journey is unique, and it’s important to celebrate the small victories.

Sound Bites

• "I love talking about Miles."
• "We can do this, Miles."
• "It's a beautiful vision."

Chapters

00:00

Introduction to David Tillman and His Journey

02:18

Understanding Fragile X Syndrome and Its Impact

08:19

Navigating Family Dynamics and Support Systems

11:00

The Importance of Community and Connection

13:20

Music as a Bonding Tool

17:48

The Need for Arts Programs in Disability Advocacy

21:43

Advocacy and Raising Awareness

25:07

Finding Balance and Celebrating Moments

27:20

Navigating Crisis Moments

31:24

Understanding Diagnosis and Support

41:04

Building Community Connections

46:24

Advocacy and Future Planning

Instagram: @xtraordinarymiles

https://www.linkedin.com/in/david-tillman-phd/