What One LGS Mom Wants Every Caregiver to Know

When Mason turned 18, his mother, Tricia, had two very different emotions to hold at once. There was gratitude, deep and genuine, for 18 years with a child she describes as a beautiful, shining human being who has overcome so much. And there was grief, quiet but real, for the milestones that would never come.

Mason lives with Lennox-Gastaut syndrome, or LGS. While his body is that of an adult, developmentally, he functions at the level of a 9-month-old. He cannot walk, talk or perform any self-care tasks independently. Everything, without exception, is done for him. As Tricia puts it, it is a little like having a baby in a big body, and the world, she has learned, is not built for that.

Turning 18 brought a wave of administrative and logistical realities that few families anticipate. Legal guardianship paperwork. Government forms requiring proof of disability all over again. A jury duty summons. Military recruitment mailings. And perhaps most significantly, the transition from pediatric to adult medical care, leaving behind doctors and specialists Mason had seen his entire life and navigating a new system that is often ill-equipped for patients like him.

The physical and emotional weight of caregiving has grown heavier as Mason has grown bigger. Outings that were manageable when he was younger now require extensive planning, and the family admits they say no far more than they would like to. Doctor's offices present recurring challenges: rooms too narrow for his wheelchair, no proper equipment to weigh him, and no appropriate changing facilities for an adult with complex needs. That last reality hits Tricia particularly hard. If we do not fit in where we are meant to be, she asks, where do we fit in?

Amid that ongoing grief and exhaustion, Camp Small Steps stands out as a rare source of anticipation and relief. Hosted by UCB, the camp is designed so that the environment adapts to children like Mason rather than the other way around. For Tricia, the promise of that experience is about more than activities. It is about belonging, about nervous systems finally getting to rest and about feeling found.

Her message to other caregivers navigating similar isolation is clear and hard-won: Your people are out there. Stay involved, keep showing up and know that you are not alone.