James' Story

The Transformation of James Williams III

James' Story

After more than 15 years of receiving services at Kennedy Krieger Institute—from the feeding program, to the severe behavioral unit, to the autism school program—James Williams III is redefining his potential.

It was a psychiatrist who delivered the cold diagnosis to Sheila and James Williams Jr. all those years ago: Their 2-year-old son, James III, had autism and intellectual disability—he would never have friendships, have a job, live independently, or even go to the bathroom by himself. The doctor recommended institutionalization for their firstborn son. James Jr. thanked him politely for his opinion, then left, the first of many times he would do this over the years when someone told him his son couldn’t do something.

As far back as the Williamses can remember, James had never been an easy child. From the earliest age, he had problems with hearing, sleeping, eating, allergies, speech, and behavior—by the time he was 14 months old, they had taken him to more than 30 specialists. He showed unusual behaviors—meticulously lining up his toy trains, walking on elevated ledges, and insisting on riding in a shopping cart while in the grocery store or else launching into an earsplitting tantrum, horrifying passersby. He had sensory issues so severe that a trip to the dentist proved a nightmare.  And at day care, he showed signs of aggression, such as biting.

But the biggest concern quickly became his extreme food selectivity. He would eat only four foods—bacon, waffles, Skittles candy, and McDonald’s french fries (and only if they were in a special red container). His body was not receiving enough nutrients, and he was in a “failure to thrive” situation.

A teacher at James’s school recommended the Pediatric Feeding Disorders Program at Kennedy Krieger Institute, and James was admitted into the inpatient program. “It was really scary,” recalls Sheila. “It was the longest six weeks of my life.”

On the Brink

James’s eating habits improved dramatically by the time he was discharged, but his behavioral problems continued. At home he would bite anyone in his path, including his younger brother and sister, who began to cower whenever he was in the room. He had violent screaming tantrums so severe that his father had to put him in a “basket hold”—standing behind him and putting his arms around James’s arms, applying deep pressure in an attempt to calm him down and keep him from being violent—but that never helped for long.

Given their previous success with the Institute’s feeding program, the family enrolled James in Kennedy Krieger’s LEAP Program—a specialized school program for students with autism. In addition to providing students with autism and severe behavioral challenges access to the Maryland general curriculum, the LEAP Program provides instruction in life skills, community-based instruction, and work-based learning for these students, while incorporating behavioral intervention strategies.

Based on the severity of James’s behavioral challenges, specialists at the school recommended more significant intervention through Kennedy Krieger’s inpatient Neurobehavioral Unit, one of the leading programs in the nation for providing intensive behavioral treatment to individuals with severe behavior disorders.

Putting James in the neurobehavioral unit took a toll on the entire family. Between commuting from his home in suburban Maryland to work in D.C. as chief of staff to a member of Congress, and then to Baltimore to visit his son and work with the therapists in the neurobehavioral unit, James Jr. left the house most days at 7:00 a.m. and returned well after midnight. During the time his son was in the unit, he had to pass up a promising job opportunity. Sheila and James Jr. worried that their lives revolved around James III at the expense of their other children. It was a very hard time for the entire family, and at times, it seemed like things would never get better.

The behavioral specialists at the neurobehavioral unit assessed James’s behavior and developed interventions to decrease his problem behavior while teaching appropriate responses. They collected data on which interventions worked, and systematically evaluated the results until an effective treatment was developed. During James’s time at the Neurobehavioral Unit, he continued his schooling. Every day, his instructors would pack up his books and walk them to the neurobehavioral unit to make sure James had his lessons, and a tutor would help him with his work.

Breaking Through

After about three or four months at the neurobehavioral unit, James’s behavior started improving, and after seven months, he had improved enough to be discharged. On his last day, his parents catered a party for more than 40 people at the Institute—doctors, therapists, behavioral specialists, nurses, aides, teachers—anyone who had anything to do with James’s care. “I don’t know how to say thank you for saving our son’s life,” James Jr. told them. “That’s what you’ve done.”

When James III transitioned back to school, his behavior was much improved, though he still had some behavioral challenges. To encourage his good behavior, the school used applied behavior analysis and positive reinforcement, setting a timer to help him stay on task and giving rewards for finishing his work, following daily rules, and not showing disruptive behavior.

The school communicated frequently with the Williamses, offering suggestions and behavioral strategies they could incorporate at home. “I can’t give enough credit to the school for communication,” says James Jr. “It was superb.” His parents were diligent about following through with behavioral suggestions from his teachers, which is one of the reasons why James was so successful, according to Mike Delia, director of education at the LEAP Program.

In an effort to help her son, Sheila applied for a service dog for James, and as a result, Tiffany—a golden retriever specially trained to be a companion for someone with autism—joined the family. Tiffany was trained to help redirect certain behavior in James, such as flapping his arms, twisting his body, or making  high-pitched noises. But what is most amazing about Tiffany, according to James’s parents, is that she taught James empathy. James learned to take care of Tiffany—brushing her, walking her, feeding her, and taking her to the vet—and in the process, they formed an emotional bond. The Williamses believe their son’s bond with his dog helped him learn to care about others. Before, if James saw someone get hurt, he would just look at that person blankly, without empathy. Now, if he sees someone hurt or crying, James is able to show concern and sympathy—a major breakthrough for someone with severe autism.

High Expectations

James’s parents never lowered their expectations for James. “Autism is a diagnosis, not an excuse,” is an oft cited mantra of James’s dad, who insists that James III wash his own clothes, clean his room, make his bed, take out the trash, clean the bathroom, and vacuum the house. “James is not afraid of hard work,” says his father. “As a matter of fact, he relishes it. James is an excellent leader and example for his younger brother and sister.”

James III began focusing his energy on his school’s work-based learning program. He worked in retirement communities, arboretums, thrift stores, and more, by delivering mail, working a cash register, recycling, and other duties. And he was able to do them independently. “To have our students achieve independence in work-based learning is a huge goal,” says Delia. “Not all our students are able to, but James is one who really doesn’t need supervision, and that’s remarkable.”

Not only does James stay on task, but he also helps his friends stay on task. Although James is nonverbal, he uses a voice output device to verbally prompt others, or he will point to a schedule or even grab students’ hands and take them to the next activity.

“James epitomizes our mission of helping students achieve their potential,” says Tricia Wood, special educator at Kennedy Krieger’s LEAP Program. “He is someone whom we believe has reached his potential and has gone beyond what we thought that could be.”

Last June, James III graduated from LEAP at age 21 and received an honorable discharge and two service ribbons for his participation in the Young Marines. James is currently working for Ardmore Enterprises, and continues to interview for additional jobs and participate in trial work sessions. On weekends, James participates in a bowling league, Special Olympics, and church services. “We have high expectations for James,” says his father. “We expect him to get a job, live semi-independently, and be a tax-paying citizen contributing to other people with or without disabilities. So far, James’s example of hard work, determination, and diligence has repaid our investment of energy, love, and effort.”

“We are so, so proud of James for his achievements,” adds his mother. “Seeing where he was, compared to where he is now, he’s done nothing but make us very, very proud.”

James epitomizes our mission of helping students achieve their potential. He is someone whom we believe has reached his potential and has gone beyond what we thought that could be.

Tricia Wood, special educator at Kennedy Krieger’s LEAP Program