When the outbursts were over, Luke would cry out of frustration and remorse. He didn’t have the words to express what he was feeling and he didn’t know why he did the things he did.
“I hate the way I am,” he’d tell his mother. “I don’t want to be like this. I don’t know why I do this. I don’t know why I act like that.”
His mom, Sherry, didn’t know either. “It was heartbreaking,” she says. “It was absolutely heartbreaking.”
Luke was her only child, and he’d always been spirited. When he was 3, he threw tantrums like many children his age, but Sherry began to notice that he wouldn’t wind down like others did. And he was anxious, unable to sleep at night unless someone was in bed with him.
Sherry thought maybe Luke was reacting to stress in the home as his parents’ marriage was breaking up, but the episodes just got worse, and by 3rd and 4th grades he was having serious problems in school. He was anxious and unnerved by change. His distress would build into panic and he’d try to run away, fighting back when school staff restrained him. “I’ve come to school where everything’s turned over in the room, every chair is turned over, garbage cans dumped out,” Sherry says. “He wanted out of that situation.”
Luke was 7 years old, in 3rd grade, when he got his first mental health diagnosis: doctors said he had a mood disorder. Sherry, a nurse, suspected bipolar disorder. Medications were started and would help for a while and then stop, forcing hospitalizations to adjust his regimen. By the time Luke was in 5th grade, Sherry was getting phone calls every day from school because he was crying and unable to sit through the class or he was being aggressive with adults.
The second diagnosis came in the summer of 2012, when Luke was 10, after a new round of testing pointed to “atypical autism,” or pervasive development disorder-not otherwise specified (PPD-NOS). Sherry was befuddled by this news. Mood disorder had made sense to her, but in its place, autism didn’t seem to fit the child she knew at home—a child who loved his family, communicated well, sought attention from adults and played with a neighborhood friend. “I really didn’t believe the diagnosis at first,” she says. “I thought they had it wrong.”
Luke spent that summer in a day treatment program for children who can’t function in traditional schools, and he seemed to stabilize there. Sherry and the staff began to prepare for the fall, when classes would start and new teachers and students would arrive, and they readied a plan to help Luke adjust. But everything fell apart on the first day, and Luke melted down so completely that it was clear he would not be able to come back. On his 11th birthday, Sept. 25, 2012, Sherry admitted him to a two-month hospital stay while she figured out how to get him into a psychiatric residential treatment facility (PRTF).
“He was devastated. We were all devastated,” Sherry says. “He’s never been away from me. At all. It was the hardest thing I’ve ever had to do, to leave him in a facility like that.”
Luke spent seven months in the PRTF, which Sherry says was a good place for medication management, with doctors swiftly changing drugs and dosages to find the best combination, but not necessarily for teaching him to manage his behaviors. His anxiety was through the roof, and he insisted that he would never return to day treatment school. He slept on the floor by the door, and he wouldn’t enter a room alone unless he had sight of someone else at all times. Noise, transitions and schedule changes upset him. He isolated himself and he broke his shoulder in frustration slamming into a wall.
At that point, Luke was desperate to go home to his family and Sherry was desperate to have him back—but not as the anxious, aggressive child who had left. She knew Luke wasn’t ready, and she still had misgivings about the root of his behaviors.
That’s when Sherry talked to a co-worker about FACT, Methodist Home for Children’s program for children with emotional disorders and underlying developmental disabilities. Luke’s medication management would continue at MHC while a team helped him learn new behaviors and skills to cope with his anxiety. Sherry remembers interviewing program manager Cindy Cooke and treatment coordinator Faith Lane and thinking, “This is exactly what Luke needs.”
It turned out to be exactly what she needed, too.
Luke moved into the FACT group home on June 4, 2013. MHC staff sized up his strengths and saw quickly that he had a few important things going for him: his love for his mother and grandmother, his desire to go back home, his natural athleticism and a fierce interest in sports that revealed a competitive streak.
Another point in Luke’s favor was the resolve of his family. His mother and grandmother, Sally, knew they had to change the way they interacted with Luke, to break the unproductive habits of the past, and they worked with MHC staff to learn what to do. “The last thing I wanted was for him to come back to the same home that he left, with me unchanged,” Sherry says. “It doesn’t matter what’s changed with Luke if I’m responding to him the same way that I had before. We could go right back into the same old patterns.”
But before any of that could happen, Sherry says, she had to understand and accept the PPD-NOS diagnosis. Luke’s symptoms didn’t look like textbook autism, and MHC’s staff was able to walk her through that. “I don’t know why, but I just couldn’t accept it for the longest time,” she says. “They really helped me see it and taught me a lot about children with autism and how it displays differently. They were educators and they were my coaches. They were my support system.”
Luke, meanwhile, had to adjust to new people and new expectations before he could get better. He settled into the group home and appreciated having a room of his own, but the outbursts returned when day treatment started. He rebelled, breaking furniture and punching holes in the walls. A hospitalization was narrowly avoided thanks to a quick response by his family and staff, and a doctor changed his medications to help tamp down the anxiety.
From that point on, with the change in medication and plenty of structure, Luke began to respond to coaching by MHC staff. Therapist Michele Jordan taught him how to short-circuit the anxiety before it could surge. Instead of joining the action when other children acted out, he learned to take a walk or shoot basketball for five or 10 minutes. He learned to calm himself with deep breathing or a break to wash his hands. He stopped isolating himself and he weaned himself from medications that made it hard to focus. He began to follow directions and to accept “no” for an answer. And when he didn’t, he knew the consequence would be a lost privilege, like a visit from his mother.
The gradual change Sherry saw in Luke was “spectacular,” she says. “He started doing things above and beyond what was expected—because he felt a sense of self-satisfaction.”
Sherry says she can remember the day she knew Luke was going to be OK. She’d gotten a call from Faith, the treatment coordinator, to say that Luke had volunteered to give a presentation to staff and peers about his progress at MHC. The group home uses a motivation system that recognizes each child’s growth with three levels of achievement. At the time, the system was new in the home and still being tweaked. Luke was on Level 2 when he noticed other kids trying to achieve this level had to make a presentation on why they should advance. He had not been required to present, and he felt that he should.
“And I am telling you, that in and of itself is a miracle because that child does not like to be on display,” Sherry says. “He doesn’t like to speak in front of people. But for him to do that when he didn’t have to, I could not believe it. I thought, ‘He is going to make it. He is going to be all right.’ ”
Faith says Luke’s competitive nature was in play by that time, pushing him when he saw others doing something he needed to do. His presentation was outstanding, she says. “He told us about everything. He owned up to everything he did from day one when he came to us—the disruptive behavior, the noncompliance—and how he felt he had grown and done better.”
Luke had been at FACT for about seven months when he began his transition home. Changes are difficult for children on the autism spectrum, and they were a trigger for Luke’s anxiety, so staff created a five-week plan to prepare him and his family.
Sherry enrolled him in a day treatment program in his hometown while he continued to live in the MHC group home. Every morning, she would drive an hour to pick him up from the group home, take him to day treatment and then she’d go to work. His schedule was carefully matched to that of his days at MHC, with meals at the same time, homework and a chore. In the evening, the family would get into the car for the long trip back to the group home. Then they’d get up and do it all over again the next day.
“We wanted to do it the right way,” Sherry says. “We don’t ever want to do this again. I don’t ever want to lose my child for that length of time again.”
Luke experienced some bumps and crying spells during his transition to the new program, but none of the explosive outbursts from before. He had some overnight visits with his mom to pave the way and on Feb. 20, he went home for good. His goal now is to attend public middle school and play on its sports team—football, basketball or both.
“He’s looking ahead and he’s pushing himself,” says Cindy, FACT’s program manager. “His big motivator going forward is sports. He is all about it.”
After so many years of crisis, feeling hopeless and overwhelmed, Sherry says she is blessed to have her son back: “Luke is who he is, but a million times better. He’s relaxed, he’s not anxious, he’s able to manage change and transitions.”
Her hope now is for Luke to lead a normal and independent life. She wants him to get back into mainstream schools, play sports and build friendships. “I know that he will struggle. He will have to work on things the rest of his life. But I feel like we’ve been able to get him back on track so he has a chance at that now.”