Early in the evening last Halloween, Scott Copeland was standing in the street, watching as his 12-year-old son, Nicholas, ran door to door, trick-or-treating with a friend in their Rockville neighborhood.
Nicholas was wearing a blue costume designed to look like a fat Mario Bros. character, and he was thrilled to be out on his favorite night of the year.
But as the boys cut through a yard, heading to another front door, Copeland saw Nicholas slow to a walk, freeze and then pitch face-first onto the grass.
It had been about 10 days since the boy affectionately known as “Nicol” had suffered a seizure. This was his eighth in less than two months.
Copeland rolled Nicol onto his side, speaking to him softly as he began mentally timing the attack. He called his wife, Jillian, who rushed over from their house. By the time she arrived, the seizure had ended. The Copelands helped their groggy son into the car, took him home and put him to bed.
That night, as the couple tried to sleep, Jillian was overwhelmed with grief for the second youngest of her four sons. His happily anticipated night of trick-or-treating had been cut short after just 20 minutes.
“I need this to be over,” she told her husband. “I’m just so sad.”
Nicol was 8 months old when Jillian found him unresponsive in his crib. “He looked like he was dead,” she recalls.
The couple rushed him by ambulance to Shady Grove Adventist Hospital in Rockville, where they learned that he was having a seizure. It lasted two and a half hours, and left Nicol with swelling in his brain.
Later tests at Children’s National Medical Center in Washington, D.C., found a lesion in his left temporal lobe. He was diagnosed with mesial temporal sclerosis, a form of epilepsy rare in children.
Nicol suffered additional seizures his first two years, triggered mostly by illness. The Copelands had two older boys at the time, and “when he was sick, our whole house shut down,” Jillian says.
Anti-seizure medications reduced the frequency of the attacks, but it wasn’t known until Nicol entered preschool at age 2 that the drugs combined with the illness had affected his speech, language and motor skills.
The Copelands’ lives began to revolve around meetings with therapists and doctors as they tried to determine how best to help their son. “I started to educate myself,” says Jillian, now 45. “Nobody was ever giving a long-term prognosis.”
Meanwhile, the Copelands’ fourth son, Ethan, was born. The couple had always wanted several children, but after Nicol’s first seizure, Jillian recalls her husband saying, “We’re not having another kid. This is hard.”
“I knew that if I didn’t get pregnant soon, it wasn’t going to happen,” she says.
At 5, Nicol was attending a dozen or so weekly therapy sessions at two schools. “That was pretty much our life,” Jillian says. A year later, he was enrolled in The Lab School of Washington, which serves students with learning disabilities.
The Copelands eventually decided that The Lab School wasn’t a good fit to handle Nicol’s impairments and increasingly frequent seizures—11 in four and a half months the year he was 7.
That’s when Jillian had an idea.
“She called me one day and said, ‘I think I have to start a school.’ I threw my head back and thought, ‘Oh, God, really?’ ” says Scott Copeland, 45. “She wasn’t asking for my blessing.”
But “I thought it was a great idea. I really felt like it was our only choice.”
The idea actually made a lot of sense. Jillian had been a teacher with Montgomery County Public Schools and held a master’s degree in technology. She left the school system when Nicol was about 4, and had been running a small consulting business that helped connect parents with special education services and resources.