The Adult Disabled Child at Home

Parenting a child with special needs doesn't end at 18. It's a lifelong commitment that requires ongoing advocacy, financial planning, and emotional resilience. In this episode, Barbara sits down with her longtime friends and clients, Sue and Wendell, for an honest conversation about raising their son Matthew, who has Fragile X syndrome. They discuss the challenges of early diagnosis, the power of persistent advocacy, vocational training programs, and the complex financial and emotional realities of long-term planning for a child who will need support throughout his life.

What’s in This Episode

• Understanding Fragile X syndrome and how it was diagnosed in Matthew at age three
• Why Sue left her career to become a full-time advocate and how that shaped Matthew's outcomes
• The role of vocational training programs and job coaching services
• How participating in research programs across the country contributes to advancing medical knowledge
• The financial impact of supporting an adult child with disabilities and planning for their future
• Why building community with other special needs families became the most rewarding aspect of their journey