ELLENBY’S FIRST GOAL was to eradicate Zack’s phobias—her own way.
She read everything she could find about autism and children with phobias, and spoke to Andrew Egel, autism program consultant for MCPS and a professor in the Department of Counseling, Higher Education and Special Education at the University of Maryland, about what she was going to do. She told him she would drag Zack, almost 6, into public places he was afraid of and force him to stay, even if he kicked and screamed.
Egel, who has a Ph.D. in educational psychology, told her he didn’t fully agree with her plan to physically restrain her son.
“These methods may work for Zack, but for other kids, there may be broken bones,” she remembers him saying.
Children with phobias have exaggerated feelings of danger associated with a particular object or place, and their anxiety is intense enough to activate the “fight or flight” response, Egel says. When parents allow their children to retreat from a stressful situation, they inadvertently reinforce the phobia by confirming that the situation should be avoided.
Helping children get past the initial panic can desensitize them to the fear and “reset” the record, Egel says, but there are other ways to do it: “There are less intrusive measures, like the gradual exposure process used in Montgomery County Public Schools, which also works for some children. I wouldn’t advocate Whitney’s methods as a first step.”
Ellenby went ahead with it anyway. “Leaving lets him know, ‘Yes, you’re right to have a tantrum. There’s something scary back there,’ ” Ellenby says. “I was going to sit on top of him while everyone watched. I knew I would feel humiliated and people would say horrible things to me. Even if Zack threw up or defecated himself, I was going to stay there rooted to the spot for as long as it took him to understand there was nothing to fear.”
Reuben, who usually erred on the side of not upsetting Zack, expressed his concern about his son getting hurt. Ellenby begged her husband to support her, to stand aside and let her work. He finally agreed.
When the family arrived at the Patriot Center in Fairfax, Va., to see the Sesame Street Elmo Makes Music show in 2006, Zack took one look at the dark entrance portals and started screaming and lunging for the door. “I had to chase him and pry his hands off the railing over and over,” Ellenby says. “He was jerking his head back into my chin.”
When Zack dropped to the floor, Ellenby dropped down, too, and fought to restrain him. “All the beautiful families with their beautiful typical kids holding their sweet Elmo balloons walked by, and we were on the floor at war,” she says.
She grabbed Zack’s legs and arms and moved quickly to protect his head from banging on the floor as he kicked, bit and scratched her. “I practically sat on him,” she says. “Yes, it was cruel, but it was necessary.”
Reuben couldn’t watch anymore. He begged her to stop. “It’s over,” he said. “He can’t do it.”
A manager asked her to leave because Zack’s tantrum was upsetting visitors. The lawyer in Ellenby cited the Americans with Disabilities Act and Zack’s right to be in a public venue, regardless of his behavior. She explained that he had autism and she was working to settle him down. A passerby told Ellenby she was the “worst mother ever.” Another threw his drink at her. Ellenby restrained Zack for 30 minutes, then slowly slid him to the edge of the portal, where she begged the usher to pull back the curtain so he could see Elmo.
“Look, Zack,” she repeated, indicating the red, furry figure in the distance. “It’s Elmo. Elmo. You did it, you’re done.”
Elmo began to sing a song Zack knew and he settled down a little more.
“Yes, Elmo,” he finally said as Ellenby slid him onto the mezzanine floor. Slowly they moved into seats with Reuben.
“I thought we would be coming back every day for four or five days to get to the point we got to in about 45 minutes,” Ellenby says.
Later that year, Ellenby and her father took Zack to Baltimore’s National Aquarium, where large fish tanks create a dark and foreboding entrance.
“Zack went wild,” Jay Ellenby says. “He was kicking, screaming. I told Whitney it wasn’t important to go in and she told me to back off.” Ellenby restrained her son for nearly 45 minutes, repeating, “It’s only fish behind the glass,” until he was calm enough to take a few tentative steps inside and then enter. Zack spent the rest of the day happily looking at the fish.
WHEN ZACK WAS almost 7, Ellenby took him to see the animated musical Happy Feet. She knew he would need about 20 minutes to settle down, but she wanted him to be like other kids, to see his first in-theater movie and have the option of seeing more.
She walked in and said, “Can I have your attention? My name is Whitney Ellenby, and my son, Zack, is outside. He has autism.” She told them Zack’s tantrum would ruin the previews, but that she would have him calm enough to watch the movie. If not, she would take him home. Most of the theatergoers nodded.
When Zack came into the theater, he yelled, flailed and hit while everyone watched. “There were a few children who looked afraid,” Ellenby says. “I still feel bad about that.” She managed to restrain him, whispering, “Movie, Zack. You did it.” He settled down after the previews and watched the entire movie, something he now loves to do at least once a week.
“Much like we learn to stop at a red light to avoid unpleasant experiences—a ticket, an accident—these children learn that if they leave the situation, they will avoid something unpleasant,” Egel says. “By Whitney restraining Zack, soothing him, telling him, ‘You’re almost done,’ he calmed down and learned that those situations were not aversive.”
Ellenby’s methods worked well for Zack because he could not physically escape the situation, Egel says, noting how difficult the same technique could be with an older, larger child. “If you do this for half an hour and then the child escapes, or if it works the first time and the child escapes the second, it will only increase the strength of the response the next time,” he says. “The child will think, ‘If I tantrum harder, I’ll get away.’ ”
Ellenby still believes the struggle was worth it. Today, Zack goes to movie theaters, live shows, bowling alleys, and amusement parks without a problem.
AS ZACK GOT OLDER, Ellenby was thrilled with his progress in the outside world, but saw him lagging behind his peers in his third-grade inclusion class at Bethesda Elementary School. Socially, he became more isolated. Academically, even though the teachers modified Zack’s assignments, whole lessons were lost on him, especially in science and social studies.
She and Reuben placed him in special education classes for fourth and fifth grades, and transferred him from the diploma track to the Learning for Independence (LFI) track at Tilden Middle School in Rockville. The LFI program continues with basic academic instruction while also emphasizing functional life skills, such as handling money.
“It was difficult for me to give up the dream of Zack getting a diploma,” Ellenby says. She slowly began to accept that Zack would likely never recover from autism. He would always struggle to speak. He might never have a typical friendship or go to college. “Most heartbreaking for me,” she says, “he may never live entirely on his own.”
Once she let go of what she calls “the fairy tale of normal,” Ellenby began to wonder what kind of a life Zack could lead. Maybe he’ll end up in assisted living, she thought, but would that be the worst thing in the world if it’s a safe place? He has skills, and if we nurture them, couldn’t he also get a job? She would never stop pushing Zack to speak, read and write, but progressing like a typical child didn’t matter so much anymore. “I just want him to become the most competent person he is capable of being, and to function in the world,” she says, “to communicate his needs, to enjoy life and to be as independent as possible.”
Ellenby felt liberated. “It wasn’t resignation,” she says. “It was rebirth.”
IT’S A WARM SATURDAY evening in July when the announcement comes: “The Bohrer Park Water Park is now closed.”
“This is my favorite part,” Ellenby says as families around her pack up their towels to leave. “The pool’s closed to the public. It’s all ours.”
When the gates reopen for the Autism Ambassadors’ event, children of all ages flood in, their excitement palpable. Ellenby greets each family and each child. She knows many by name and refers to all as her “ambassadors.” These are the faces of autism we bring to the community, she says.
“You want to flap? You want to squeal? You go right ahead because we all get it,” she says. “If you’re severely impacted, great. If you’re terribly phobic, we’ll get you in here. If you’re a parent who feels humiliated and feels that even within the protected autism group your child isn’t going to fit, then you better come. The only rule I have is ‘nobody apologizes for anything.’ ”
Some of the children and adults swim, some splash and others venture only ankle deep. Some, like Zack, are entranced by the 250-foot double waterslide. “Green slide. Green slide,” he says.
The parents who stand around the Gaithersburg pool use many of the same words to describe the events: “safe,” “no judgment,” “community.” “Autism is isolating,” says Katie Smeltz, a Rockville mother of 8-year-old Benzi. “When we come here, everything brightens up.”
Julia Feissner and her 24-year-old son, Justin, come to many of the events from Silver Spring. “We’re united,” she says. “We don’t feel alone. Whitney has single-handedly elevated the quality of our life.” Feissner watches as a girl takes her son’s hand and they stand at the edge of the pool grinning. She puts her hand over her heart: “Everyone wishes this for their child.”
Ellenby says the other families don’t realize that she needs them as much as they need her. Her husband believes she’s found her true calling. “This for her was a fateful journey,” says Reuben, 48. “It’s her true destination.”
She hasn’t spoken directly with parents in the group about how she helped Zack get over his phobias, but she says she’s willing to work with other children if their parents want her to. She has, at times, restrained water-phobic children in the pool or inside a bounce castle to help them face their fears like Zack did, all with their parents’ permission.
Ellenby will lobby anyone for an event with accommodations for her ambassadors. She’s arranged movies (volume down, lights dimmed, no previews), gymnastics classes and dance parties. But for every event venue Ellenby gets, she says she’s turned away just as often.