“I get the same argument every time,’’ she says. “ ‘Why should we give it to you? Then we’d have to give it to everyone.’ ” Her answer: They want it, but we need it. “Our children can’t access recreation like typical children. …They’re sensitive to the chaos, the confusion, the noise. We physically need a space of our own.”
If someone says no, she keeps asking. “If there is one thing I am, it’s persistent,” she says.
Ellenby will take on anyone who stands in her way. She’s publicly criticized Autism Speaks for giving more money to research than to direct services. She’s argued with the head of the Maryland Developmental Disabilities Council over appropriate living arrangements for adults with disabilities. She’s lobbied to increase the wages of individuals who work one-on-one with autistic adults. “We know what’s going to happen if we don’t pay these people what they’re worth,” she says. “They’re going to leave, and people with autism will be in danger. They’ll wander into the street. They’ll get hit by cars.”
In June, Ellenby gathered more than 500 signatures on a petition demanding that Montgomery County resume its 30-year practice of linking disabled people with services that can help them. The state ruled against it, though, requiring the county to hire state-selected private service providers for resource coordination.
She was part of a panel making recommendations for the equitable distribution of first-come, first-served state grant money, which, she says, was being disproportionately awarded to English-speaking and affluent families who knew how to work the application process. Many immigrant and less affluent families didn’t even know the grants existed, she says. Some of her Montgomery County friends weren’t happy.
“I was a lawyer and an advocate looking for a cause, for my group,” she says. “I found them. Zack gave me a career that means more to me than any other career possibly could. In the end, it’s not Zack who’s recovered, it’s me.”
TODAY, AT 13, ZACK Is tall and broad-shouldered with his mother’s dark hair. His dad says he seems genuinely happy most of the time. A seventh-grader at Tilden Middle School, he’s an old hand at the community outings that are new to some of his peers. He loves to swim, especially in the new pool in his backyard.
“In a lot of ways, he’s really an easy child,” Reuben says. “He’s not perfect, but he certainly has developed better than if we had left him in a 40-hour-a-week rote situation.”
There are no more full-blown tantrums, although he sometimes bites his arm when he’s anxious, and punches the wall when he’s frustrated.
“The biggest change is that Zack doesn’t stand around and wait for me to tell him what to do,” Ellenby says as her son tosses his arms over her shoulders and leans his head on her back. “Getting him out into the world and confronting what he was afraid of changed him as a person. Now Zack is Zack. We’re not fighting autism anymore, we’re working with it.”
On a Saturday morning in August, Zack bounds up the stairs to a small dance studio in Olde Towne Gaithersburg. The room is dark, lit only by a flashing disco ball. This is a place he wouldn’t have walked into several years ago, not without kicking and screaming. Instructor Jackie Zamora cranks up the salsa and begins the ZamDance class—think high-intensity Zumba with simpler steps for children with disabilities. Zack begins to jump and sway and move to the beat. The children form a circle, and even Zack takes his turn dancing in the middle.
When the class ends, Zack turns to his mother and chants, “Elevation Burger, Elevation Burger.” That’s the second stop in their Saturday routine. He knows exactly what he wants: two double-patty burgers with ketchup, pickles and onions, as usual. At the restaurant, Zack orders lunch, with some prompting from his mother, and devours it in four minutes flat. “Pool please,” he says. Ellenby smiles as her son breaks into a happy gallop and heads back to the car.
Gabriele McCormick is a regular contributor to Bethesda Magazine.