Down Syndrome: A Success Story

Parenting a child with Down Syndrome brings unexpected challenges and profound gifts. In this episode, Barbara sits down with her longtime friend Lynette Johnson for an honest conversation about raising her son Matthew, who was born with Down Syndrome in 2003. From the moment of his unexpected diagnosis in the delivery room to his recent high school graduation at age 22, Lynette shares the journey of advocating fiercely for services, navigating bureaucratic systems, and discovering that Matthew could do far more than any expert predicted. They discuss the importance of specialized programs, the impact of family loss, and the remarkable bond between Matthew and his brother Nick.

What’s in This Episode

• Receiving Matthew's Down Syndrome diagnosis in the delivery room and a nurse's encouraging words
• Why Lynette rejected the discouraging literature based on outdated 1960s-1980s research
• The challenge of accessing the CAP program and becoming the persistent squeaky wheel
• How the Innovation waiver treats the child as independent, regardless of family income
• Early intervention services, including physical therapy, occupational therapy, speech therapy, and feeding therapy
• Matthew's pride in working since age 16 and graduating high school at 22
• The importance of special needs trusts and educating extended family about proper provisions
• Nick's commitment to Matthew, including becoming certified to provide services and build social circles