Betsy Hicks-Russ interviews Martha Castillo, who shares her journey as a mother navigating the complexities of raising her son Matthew, who was diagnosed with autism and Phelan McDermid syndrome. Martha discusses the challenges of early diagnosis, the importance of community support, and the emotional toll of regression in communication. They explore the dynamics of friendships, the impact of public perception, and the significance of dietary changes in managing health. The conversation emphasizes the need for understanding and compassion within the special needs community.

https://pmsf.org/phelan-lucky/

Find Martha on Instagram - TeamMatthewLuis

• Martha was given a diagnosis for her son Matthew at 20 months.
• She pursued further testing, leading to a diagnosis of Phelan McDermid syndrome.
• Community support has been crucial for Martha and her family.
• Regression in communication is a significant challenge for children with PMS.
• Support groups can be hit or miss for parents of special needs children.
• Friendship dynamics change when navigating special needs parenting.
• Public perception can be daunting, but most people are not judging.
• Dietary changes have led to significant health improvements for Matthew.
• Martha emphasizes the importance of presuming competence in nonverbal children.
• The Phelan Lucky campaign has raised over $1 million for the Phelan McDermid Syndrome Foundation.