Out of His Shell

This is not going to be a story about The Hits. The Hits are incidental. They are a means of expression. They do not represent the totality of the individual. The Hits do not define who the boy is. Rae is more than The Hits. Much more

Raekwon is 16 years old. His home is in the Greater Boston area, but he’s spent close to half his life in Greenfield, New Hampshire, at Crotched Mountain School. Rae has severe autism, which has catalyzed a particularly pernicious method of coping and communication: self-injury.

By the time Rae came to Crotched Mountain School for his second admission–after moving back and forth from the public school and Children’s Hospital–he was averaging approximately 1,000 hits a day. It was probably more. Staff lost count.

“We could not track every single one,” says Kris Horton, Rae’s residential program manager at Crotched Mountain. “It ended up being easier to measure the intervals of time when he wasn’t hitting himself.”

For this second time around, there was initial skepticism about bringing Rae back. The number one concern–as it has always been with Rae–was safety. Was Crotched Mountain School capable of ensuring that Rae and his staff could be safe?

“The focus in therapy was on maintaining his safety via management of all his protective equipment,” said Gwen Rumburg, Rae’s occupational therapist. “We were trying to get him to participate in activities without hurting himself.”

But there was nowhere else to go. Rae’s family had found no other schools, which would likely have resulted in only one alternative: a restrictive hospital placement. So the Crotched Mountain team put together an ambitious plan, which included a full complement of related services to include Applied Behavior Analysis, psychology, speech, occupational therapy, therapeutic recreation, orientation and mobility and music therapy all wrapped up in a 2:1 staffing model.

The district signed off. The family signed off. The plan was set.

Rae was coming back.

For those first few months, Rae was the Mystery Man, the kid who lived in his own place, rarely ventured out and received all of his education in the home. When people did catch glimpses of him, they saw a small, lean boy wearing arm and leg immobilizers (light plastic sheaths that limited his ability to punch or knee himself in the head), a modified kickboxing helmet (think Darth Vader-like headgear), maybe an oral motor device (to protect his tongue), who was flanked at all times by two staff members.

If you did happen to witness one of his behaviors–and they were frequent in the beginning–you would have seen self-inflicted ferocity that you wouldn’t soon forget. The staff would intercede immediately, offering up their hands and forearms as shields to absorb the blows. Soon after they moved to large, custom foam pads to intercept The Hits.

“You spent the day blocking,” Kris says. “Rae seeks reactions. He feeds off them. They fuel his behavior. And because he’s a genius–and I’m not kidding about that–he would be able to control his environment and control his staff. He’s forgotten more about behavioral management than most of his staff would ever know”

“For that first year, there were no demands,” says Chris Leary, Rae’s teacher at Crotched Mountain School. “All we asked of Rae was to ‘just communicate what you need.’ He probably averaged about 20 words a day that first year.”

The team–which Kris labeled as the clinical equivalent of the 1992 Olympics Dream Team–met twice a week, five hours total, for the first year. They combed through data, pored through the reports and worked to pinpoint the source of Rae’s behaviors.

To the best of their clinical ability, the team deduced that these hits were Rae’s way of controlling his environment, of communicating his displeasure with demands that disrupted a routine (Rae would often burrow in his couch or tightly wrap his arms around himself for the sensory input, and any demand, even as innocuous as “time to eat” or “go to the bathroom,” that threatened that posture could trigger an episode).

“Rae had a greater sense of comfort in knowing what would happen. And that meant he would feel safe.”

Rae’s days were deconstructed down to the minute. The team crafted three-inch thick binders that outlined Rae’s schedule, complete with every response and behavior staff could expect. Then came the tireless integration of all this information; staff, therapists, and teachers needed to be on more than the same page–they needed to be on the same word in the same sentence in the same paragraph of the same page.

“We all became predictable,” Kris said. “That meant Rae had a greater sense of comfort in knowing what would happen. And that meant he would feel safe.”

For Rae, it meant more than feeling safe; he needed to articulate it. And so, several months ago, when the conflict between control through adverse behavior and being safe would begin to broil inside him, when he noticed that he was wrapping himself tightly with his arms as he faced the crossroads, he would say to himself: “I be safe, Rae.”

He would make the choice, he would assert control, he would practice mindfulness.

He would be safe.

After the first year of home-based education, Rae finally entered Chris Leary’s class. For nine months he stayed in the same room, working on simple academic challenges like puzzles, voice recognition, object/shape identification, and tactile icon recognitions using a communication device. As he grew more and more comfortable with the routine and the environment, Rae turned his attention to a new challenge: macaroni and cheese.

Rae’s team implemented a plan to teach him how to make his own mac and cheese, which involved “reverse engineering” the process; Rae would start by eating the mac and cheese and the team would work backwards, teaching him to mix, to add the butter, to add the cheese packet, to turn off the microwave, to turn on the microwave, and all the way back to the opening the box. Eventually Rae was doing the whole process, in order, by himself.

It had taken two years.

Today Rae has no helmet (by his own choice). He walks throughout the school and around the campus. He makes frequent trips into the community. He waters plants at the Farm School. He is a reliable, active participant in the afterschool music program. “Rae absolutely loves music,” Kris says, “anything with rhythm.”

“It was all positive interventions,” Chris says. “It was tone of voice. It was body language. These changes were made slowly and with intent by the whole team.”

“A lot of other places might have worked with Rae in a punitive fashion,” Kris adds. “But that’s not us. That’s not Crotched Mountain.”

“Rae is a work in progress and I always marvel at how much effort he has put into his success’” Gwen says. “Life used to appear very difficult and painful for him but now he looks like a happy, secure teenager who is thriving.”

There are days when there are no Hits. On a bad day there might be twenty.

But this story is not about The Hits. This story is about Rae. About how he found control; how he discovered equilibrium; how he made himself safe.

And how he, for the first time, a few days ago, walked into the Farm School chicken coop, an environment he had never ventured into before, gathered eggs amidst the unpredictable chaos of squawking, flapping birds, brought the eggs to the home economics room in the school, placed them in the microwave, removed the shells when they were cooked, mashed up the eggs, applied his favorite ranch dressing, and carried his meal to the table.

He sat down and began to eat, scooping forkfuls of his custom egg salad, enjoying his lunch, only pausing, more and more infrequently, to speak a small sentence with enormous power.

“I be safe, Rae.”

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2018-10-11T10:10:17+00:00