Protecting Fragile Innocence
The moment someone becomes a parent, he or she accepts the tremendous responsibility of doing everything possible to ensure their child's health, happiness and ability to thrive to create a safe place where they can learn and grow in peace, enjoying the simple innocence of childhood.
But for children with severe behavioral disorders, their parents face a daily battle to protect them from their biggest threat: themselves. Between 10 and 15 percent of individuals with intellectual disabilities engage in various forms of selfinjury, such as head banging, eye poking, self-hitting and other dangerous behavior. Children and adults with more profound retardation, autism and sensory impairments are particularly prone to these behaviors. Individuals who engage in selfinjury are also likely to demonstrate other reckless behaviors, such as aggression, property destruction, elopement and pica (eating non nutritive substances such as paper, rocks and glass). Left untreated, these behaviors can result in serious injuries, such as broken bones, retinal detachment, open sores and infections. More severe cases can become life-threatening and can also put children at risk for long-term institutional placement.
For more than two decades, Kennedy Krieger's Neurobehavioral Unit (NBU) has focused on the assessment and treatment of severe behavior disorders. This unique 16-bed inpatient facility often serves as a last resort for families whose children demonstrate particularly entrenched behavioral problems, and for whom less intensive therapies have already failed. The families who come to the NBU face a difficult journey, and one that often requires them to let go of their children for the first time in their lives (see article on "Hope for Hillary,"). But for families like the Calverts, who have struggled for years to give their son Brandon the childhood he deserves, any sacrifice is worth it.
The Calverts, a military family living in Norfolk, Va., were used to facing challenges. At age five, Brandon was diagnosed with Fragile X syndrome, a genetic disorder that causes intellectual disabilities and often, symptoms associated with autism. Although Brandon is verbal, he struggled to fully communicate his wants and needs and often resorted to scratching himself, punching his mother Jayme and kicking his nine-year-old brother Noah.
Although troubling, his behavior remained somewhat manageable until last December. Concerned that Brandon had spent a longer-than-usual time in the shower, Jayme went to check on him and found he had smashed a perfume bottle and used the shards to slice open his arm. The injury required 23 stitches.
"I've never moved so fast in my life," says Jayme. "I don't know what provoked him this was just out of the blue."
After the troubling incident, the Calvert's insurance company referred the family to Kennedy Krieger because the Institute maintains a clinic devoted to patients with Fragile X. But as soon as the care management counselor who answered the phone heard about Brandon's self-injurious behavior, she suggested the NBU. Although an initial evaluation revealed that Brandon met the admission criteria for the NBU, his family spent nearly a month trying to get their insurance company to cover his treatment. Eventually, their senator contacted the insurance company and Brandon was admitted in late February.
Treatment in the NBU generally includes four phases. The first phase, involves observing children's interactions with parents and therapists and conducting a "functional behavioral assessment" to determine the factors that cause the troubling behaviors. A thorough psychiatric evaluation takes place concurrently, explains NBU medical director Lee Wachtel, M.D., in order to diagnose additional psychiatric conditions, such as mood, anxiety, psychotic and hyperactivity/ inattention disorders that may also influence the child's behavior. This process can take weeks or months, since many patients display several forms of problem behavior, often for several reasons, and may be taking previously prescribed medications. This phase also includes interviews of caregivers and a formal preference assessment designed to determine which rewards are most likely to have a positive impact on the child's behavior.
The second phase, focuses on implementing therapies based on assessment results. During this time, the team of therapists assigned to each child emphasizes skill building and training to help patients develop more appropriate means of dealing with difficult emotions or disappointments. The third phase, emphasizes fine-tuning successful interventions and making them easier to implement in a variety of settings. For example, if a child initially engages in problematic behavior every time he is asked to do schoolwork, an early intervention might allow him to take a break every time he asks for one instead of acting inappropriately. But as the therapy progresses, the child might be expected to attend for longer and longer periods before being allowed a break. Efficacy of medications is also monitored closely, with particular emphasis on minimization of side effects, to which children with intellectual disabilities are particularly prone.
The final phase calls on parents, teachers and others involved in the child's care and/or education to learn to implement the interventions themselves. "Parent participation in our interventions is critical," says Dr. Louis Hagopian, Ph.D, program director of the NBU. "Our experience shows that success after discharge is dependent on the caregivers' participation during the admission and afterwards. The expectation of intensive parent involvement is actually part of our admission criteria."
The typical NBU admission lasts from three to six months. "By definition, the patients we serve have very severe conditions, and have demonstrated resistance to treatment," Hagopian says. "Our program is unique in the intensity of its behavioral programming, and the integration of services across disciplines. Each child has a staff of three behavioral therapists, supervised by a behavioral analyst, working with them for 3.5 hours a day. We're able to collect behavioral data around the clock."
The interdisciplinary nature of the program also distinguishes it from lessintensive severe behavior treatment options, which often have a purely psychiatric focus designed to stabilize patients with acute behavior problems. In addition to the behavioral psychologists who focus on helping patients find more appropriate responses, the NBU relies on psychiatrists to address patients' problem behaviors related to psychiatric disorders such as depression or bipolar disorder. Nurses provide additional medical care for problems related to behavioral issues as well as the management of other medical conditions. Speech-language pathologists work with patients to help develop adaptive communication skills, while educational coordinators provide educational programming and help behavioral therapists generalize interventions for educational settings. Social workers help parents deal with the stress of their child being in the hospital, ease patients back into home and community life and assist families in accessing support resources, which can often be critical to maintaining gains after discharge.
The NBU also maintains a number of research programs most focusing on developing new assessment and treatment strategies. Since the NBU's founding, dozens of its clinical procedures have been replicated in other programs and are used around the country. Dr. Hagopian is currently studying why individuals with autism display highly rigid and stereotyped patterns of behavior, while fellow NBU behavioral psychologist Patricia Kurtz is examining how problem behavior progresses when it develops in very young children.
Discharge planning begins even before admission. The team works together to develop realistic goals for each patient. For most patients, the team sets a goal of at least an 80 percent reduction in inappropriate behaviors before leaving the NBU. Over the past eight years, the NBU has achieved or exceeded this goal in more than 88 percent of patients treated. In Brandon Calvert's case, his team believed he could achieve a 90 percent reduction in the dangerous behaviors that made his admission necessary.
"By the time Brandon got to the NBU, his dangerous behaviors had begun to result in several visits to the ER and considerable disruption at school as he was moved between classrooms in an attempt to manage his behaviors and keep other students safe," says Lynn Bowman, M.A., the Director of Direct Care Services in the NBU and the Case Manager who led Brandon's treatment. "We learned that Brandon could respond negatively any time demands were placed on him like it's time to do your schoolwork' or brush your hair.' These common requests could result in Brandon engaging in hundreds of destructive behaviors in a tantrum that would typically last for two hours or longer." In addition, the team discovered that Brandon's negative behaviors followed a cyclical pattern with several days of high frequency and intensity followed by several days of much lower rates. This led to trials of various mood-stabilizing medications. Brandon ultimately demonstrated a marked reduction in behavior cycles while taking the medication Seroquel.
During behavioral treatment, therapists began offering Brandon tokens for complying with requests, which he could later redeem for toys, healthy snacks and other preferred items. "Over time, we began requiring more and more work to earn rewards, and Brandon's compliance improved dramatically," notes Bowman. Brandon was discharged in late July after attaining a 96 percent reduction in negative behaviors with medication and treatment in place. Prior to his discharge, his parents and teachers pariticipated in therapy training.
"Fortunately, Brandon has a wide range of communication skills," Bowman says. "We can tell more quickly if something's not working, and he can give us feedback faster."
As Brandon's discharge date approached, his teachers planned to visit the NBU to learn more about how to incorporate the successful interventions into the school day. "Our patients' teachers are usually relieved to learn that we've found a plan that works," Bowman points out. "If they're struggling to keep a child from hurting himself or his classmates, it's difficult to make any educational gains."
Brandon's parents are committed to continuing his treatment at home. "It was hard to accept him being gone, and another mom on the unit told me it would get worse before it got better," says Jayme Calvert. "She was right - but I see the change in him. My son slipped away from us last year, and the NBU brought him back to where he used to be. His friends are counting down the days until he comes home. Hopefully, he'll be able to go back to the Special Olympics and the surfing program for kids with autism that he loves."
For more information on Kennedy Krieger Institute's Neurobehavioral Unit, please call 443-923-9400.