When Kathy Leavens – mother of four boys, two of whom were diagnosed with neurologic conditions – found herself spending hours researching symptoms, treatments, or simply how to cope, she found herself stuck on one simple question: “Where is the person who has done this before me?”

As she navigated the difficult journey of her sons’ conditions, she made a promise to herself that the next person to walk this path wouldn’t do it alone. She would become the person lending a hand to someone else who would inevitably find themselves in her shoes. After the passing of Kathy’s son Matthew, who lived with Lennox-Gastaut syndrome, Kathy followed through on her promise, becoming a Family Support Specialist for the Family Support Program with CNF.

“I found the more support I gave, the more my heart healed,” she said.

What is Family Support?

Family support is emotional, relational, and practical support from someone who has experienced navigating disease diagnosis, treatment, and management for a child living with a neurologic condition. Through our Family Support Program, our family support specialists are trained to help families with whatever they need in the moment – advice, guidance, or simply a listening ear.

From Kathy’s experience, she has found that support isn’t a one-way street. It’s also about the fulfillment that being the ‘supporter’ can bring.

“I am happy to be able to lend an ear, offer emotional support, or connect them with a community resource that can have an impact on their lives,” Kathy said. “But mostly, just knowing that when they reach out for Family Support, it can be exactly what is needed at a time when their hope might have been fading makes all the difference to me.”

What Does Family Support Training Involve?

Have you found yourself wanting to pay it forward, or to help other families as Kathy has?

The process to become a Family Support Specialist requires about an eight-hour commitment to get started. The training involves three modules, each with three videos to watch on your own time. Then all participants convene for an interactive session with Family Support Specialist Trainer and Licensed Professional Counselor-Supervisor Brad Thompson.

The modules and sessions will provide you with the tools you need to become a source of information and comfort for other families in the CNF network, including:

• Establishing healthy personal boundaries and self-care to avoid burnout
• Listening techniques
• Stages of adaptation and grief
• Nuances of cultural awareness
• Relationship-building skills
• Strategies for facilitating support groups
• How to connect families to appropriate and timely resources

To be one of the first to know when the training is available, visit childneurologyfoundation.teachable.com to share your contact information.