TCU researchers combine caring guidance and pioneering research to help unreachable kids.

Healing Humpty-Dumpty

TCU researchers combine caring guidance and pioneering research to help unreachable kids.

By WENDY LYONS SUNSHINE

Six-year-old Julie ran off the soccer field, dark blonde hair flying behind her. Stopping briefly, she threw her arms around a small girl and gave a happy squeeze. Face lit by a big grin, she turned and hugged her older brother too.

“I got a goal!” she bragged.

Mom and Dad watched with quiet pleasure, keeping a comfortable, alert eye on their three youngsters. The afternoon was winding down after a morning spent ferrying the children around town to birthday parties. Dad and Julie’s two siblings had just arrived at the game in progress. Having welcomed them, Julie bounced back onto the field to join her teammates.

This might look like an ordinary scene, but for the Johnsons, it is akin to a miracle.

When they brought their oldest, Justin, home from Russia to North Texas at 23 months old in 1999, the Johnsons (not their real names) discovered he had developmental delays. The neglect he had endured before and during his orphanage stay had taken its toll. Still, he was docile and good-natured, and his learning problems were straightforward. He was easy to help.

Julie, who arrived along with him from the Russian orphanage at 9 months old, was another story. “She wouldn’t let you rock her or hold her. At nap time you laid her down and walked out; she didn’t let you touch her,” said her mom. By the time she was 3, the girl was more than a handful. Her emotions ran to the extremes. One expert diagnosed her as having bipolar disorder, a mental illness characterized by bouts of euphoric hyperactivity alternating with extreme anger and depression, and medicated her for that.

The medicine made little difference. Unprovoked, she lashed out at her gentle brother. If her mother said white, Julie said black. When a parent agreed with her, the girl shifted her position to the opposite. Constantly angry, she hit, spit, kicked, and threw things. She growled like an animal and writhed on the floor in tantrums. No matter what strategy her parents tried, nothing worked. Time-outs, more discipline, more structure — none made any difference.

In 2003 the Johnsons brought home their third child from Russia, a pretty 11-month-old girl, and relocated to a new house. A new nanny lasted only four weeks because Julie was unmanageable, defying every reasonable request, even battering the caretaker.

Things came to a head one morning when Julie kicked her screaming toddler sister down the stairs and was found stepping on her, as if in victory. Desperate and distraught, the Johnsons considered putting the girl into a psychiatric hospital. But they recalled the special-needs camp their son Justin had attended at Texas Christian University and the child development experts there. So the Johnsons called up Drs. David Cross and Karyn Purvis at TCU and pleaded for help.

Purvis agreed to coach the Johnsons through an intensive home program if certain conditions were met. The family had to curtail their

daughter’s outside activities, and one parent was to remain within three feet of her around the clock for many weeks. With Purvis’ help, the Johnsons developed a list of simple rules for Julie and wrote them on a big chart. (Rules like “Listen to Mom and Dad,” “No hurts,” “No growling,” and “Use my words.”) The couple were explicitly trained in how to respond when their daughter broke any of them. The discipline was both playful and firm and remained intently focused on retraining, not punishing. Positive feedback and encouragement were given whenever possible.

The researcher taught the parents strategies to help the little girl manage her deep-seated trauma, self-regulate her emotional and physical needs, and gain trust in and respect for her adoptive parents. To interrupt violent episodes, the Johnsons learned a physical restraint that transitions into a nurturing cuddling session once the child has calmed down. The goal is to restore a healthy attachment between parents and child through a careful balance of structure and nurturing.

Julie’s behavior improved tremendously during the course of the three-month program. Her outbursts diminished, and her affection and happiness increased. And these gains have held steady. The only medication Julie needs now, nearly a year later, is a sleeping aid to counteract persistent insomnia.

Julie’s mom is still occasionally startled by her daughter’s transformation — as when the child spontaneously put her arms around her, or the first time she told her mother, “I love you.” The 6-year-old has become devoted to her little sister and has so many school friends that the birthday parties can stack up to three a day on weekends. Mrs. Johnson sometimes has to remind herself that this happy, well-behaved, and sociable little girl is the “real” one — not the angry, aggressive, and uncaring child from the past.

The little girl’s behavior wasn’t the only thing that was transformed after the program. Simple urine tests showed that Julie’s brain chemistry, wildly out of sync on day one, had improved dramatically as well. These findings dazzled the TCU researchers — that a child could be pulled back from the brink of mental illness by helping her connect with her mother and teaching her to navigate the world. The findings in Julie’s case dovetail with Purvis and Cross’ groundbreaking research into the interaction of brain chemistry and behavior, which is already pointing the way to more effective therapies for troubled youngsters. The professors’ work — an unusual combination of applied field work and research — has begun to draw national and international notice in the adoption field.

Cross, director of TCU’s Developmental Research Lab, and Purvis, director of TCU’s Adoption Project, rarely offer home-based programs such as the Johnson family went through, because they are working furiously to share their hard-won insights with students, prospective parents, adoptive families, mental health professionals, adoption agencies, and child care advocates. Their schedule is jammed with teaching, public speaking, running special-needs camps for adoptive families, laboratory research, and preparing their research findings for presentations to their peers. Professional invitations have come from as far away as Iceland, and the nationally recognized Gladney Adoption Center in Fort Worth has sought their expertise. This week Purvis is scheduled to deliver a keynote speech at a national meeting of adoption agencies in Washington, D.C.

All the North Texas parents interviewed for this story emphasized how difficult it was to find the right diagnosis and treatment for their troubled children. (None of the family members’ real names is used, to protect their privacy.) Many visited professional after professional, getting conflicting advice and diagnoses, before coming to the TCU program.

Even with Purvis and Cross’ help, and despite some parents’ intense efforts and fervent hope, not all stories have a happy ending. Some children remain too damaged to reach, and sometimes parents themselves are too overwhelmed and drained to continue trying. Regardless of the outcome, families who have dealt with Purvis and Cross speak of them with gratitude. And for the Johnsons — who spent that wonderfully ordinary afternoon at the soccer field — the insights and strategies shared by the TCU researchers are priceless.

“It’s made such a huge difference in our family,” said Julie Johnson’s mom. “It’s been a lifesaver for us.”

Children who are adopted after infancy often have a difficult time adjusting to new surroundings and a new family. Those who arrive from overseas have the added obstacles of a foreign language and culture. And if youngsters have spent their earliest days in institutional settings or with abusive caretakers — or both — the adjustment challenges can be tremendous.

The stories of such children, and the problems they pose for themselves and their adoptive families, are no longer new. The damaging effects of neglectful and impoverished orphanages, staffed by overworked or uncaring employees, was documented in a United Nations report more than a decade ago. It detailed the problems that develop when babies don’t get the physical and emotional nurturing they need. But the story remains a heartbreaking reality, as American families continue to adopt children from orphanages abroad — and from dysfunctional birth parents in this country.

Cross and Purvis are specialists in a child development theory that examines these kinds of problems. “Attachment theory” holds that the way infants and toddlers are cared for early in life sets the stage for their future social adjustment. Research confirms that babies who are ignored or mistreated rather than being cuddled and protected don’t develop as quickly as well-nurtured children and have difficulty bonding with others. Cross, himself a former foster child, and Purvis, who has raised three biological children and cared for many at-risk youngsters in her home, believe that a combination of nurturing and retraining can coax troubled youngsters back on track.

“Attachment to a parent is part of ‘I’m held, I’m rocked and nurtured, and my brain develops in certain ways,’” said Purvis. “It’s a whole package. If they’ve been in an orphanage crib for the first 18 months, they can’t process touch” — and many other complex behavioral and mental health problems can develop from there.

Over the last nine years, Purvis and Cross have been able to draw an ever more detailed picture of how childhood attachment problems progress — and how they can be addressed. In 1996 Purvis was a mid-life undergraduate at TCU when a group of local adoptive families approached David Cross and the child development program. At their urgent request for help, a special-needs summer camp was launched in 1998.

Partly a living laboratory, partly an opportunity for college students to gain real-world experience, TCU’s Hope Connection camp offers interactive training to help special-needs kids function more effectively. The camp is not a psychiatric facility; children who are extremely violent cannot participate.

The researchers know that when children get aggressive or can’t sit still, their behavior often masks a profound fear or frustration at their inability to articulate feelings. So the camp works to reduce fear and help the youngsters express themselves — all in a playful, relaxed environment.

First and foremost, the camp emphasizes an atmosphere of “felt safety.” Purvis and Cross reason that even though parents or counselors know that the children are safe, what’s critical is that these deeply traumatized children experience the safety for themselves.

Every morning starts out with the same ritual:

Counselor: “Wow, this is your child, Johnny, and Johnny is at camp today. May I be the boss for your child while he is at camp today?

Parent: “Sure, you can be the boss for my child at camp today.”

Counselor: “If Johnny asks for a hug today, may we give him a hug?”

Parent: “Yes, you may give him a hug.”

This interchange reinforces the child’s trust in the parents’ judgment and affirms the parents as primary caretakers of the children’s well-being. The rest of the camper’s days are spent in a kaleidoscope of activities that challenge the body and mind.

Every two hours campers get some physical activity, like running and climbing on the playground, or maneuvering a crash and bump course in the gym with an occupational therapist. Interspersed are arts and crafts sessions, therapeutic horseback riding lessons, trust exercises, and therapeutic games.

Some games involve acting out and identifying emotions. In the nurture session, the campers offer each other Band-aids, and ask if the hurt is on the inside or outside. A licensed professional counselor leads a gentle grief and loss group, where the children discuss how families change.

The more advanced children role-play potential conflict situations, like how to show respect when parents say it’s time for bed. The kids practice their new behaviors in a playful context, and are videotaped, so they can observe themselves afterward. All the campers are assigned a college student “buddy” who mentors them through the activities. Discipline is always phrased and handled positively. The emphasis is on retraining and giving choices — not punishing.

After just a week at camp, results are dramatic. Children show authentic affection, express themselves more in words, and misbehave less. Purvis likens their progress to a butterfly’s chrysalis opening up.

When he was 18 months old, relatives removed Curtis from the home of his drug-abusing and alcoholic mother. Now in fifth grade, Curtis remains with his grandparents, who have become his legal guardians.

In 2002, Purvis assessed Curtis for his entrance into the TCU camp. A video of that session shows a twitchy dark-haired boy who cannot sit still long enough to begin the testing process. He shifts from one edge of the chair to the other, moves to the floor, and jumps up again. He makes unlikely grimaces. He has difficulty focusing on Purvis’ gentle questions or even making eye contact.

“He’s so afraid. He’s hyper-vigilant,” explains Purvis, watching the video with an observer. The researcher points out a long gash across the little boy’s forehead — one of the physical and psychic scars caused by a biological mother who also tried to drown him.

During their session together, Purvis speaks softly to Curtis and asks if he would like her to sit farther away. She offers choices so he can feel in control. To channel his nervous energy, she encourages him to squeeze a stress ball. The boy continues to shift and stray, but Purvis’ patience is remarkable. She calmly redirects him time and again. Eventually, she asks him to close his eyes and try a relaxation exercise with her. He squeezes his eyes shut, trying to overcome the scary darkness. Eventually Curtis manages a few deep breaths and relaxes enough for Purvis to begin her assessment.

The Hope Connection camp was a turning point. “He felt safe, that was the biggest thing,” said his grandmother. “He knew nobody was going to hurt him, yell at him, or force him to do anything he didn’t want to do. Karyn [Purvis] and the college kids were wonderful.” The boy also gained coordination and communication skills.

The grandparents worked to sustain and augment the progress. His grandmother attended camp so she could better understand how professionals handle special-needs children. His grandfather helped Curtis with sports and even taught him to swim, an effort which required deep trust because of the boy’s fear of water.

Watching Purvis blend playfulness, kindness, and firmness during camp was instructive for Curtis’ grandmother. “Karyn knows kids so well,” said the woman. “She’s got patience beyond belief.” One key lesson was the importance of follow-through. “I felt so bad for what Curtis had been through that I wasn’t enforcing at home,” she admitted. “I realized how important it is to be consistent and firm — that when I say ‘no’ it means ‘no.’”

Officially designated a special education student, Curtis wanted desperately to return to the standard elementary school classroom and worked hard for the privilege. This year it was granted because of his improved behavior.

“When students are sent out to the transitional school class environment, they usually don’t come back,” said Curtis’ current Scrabble club coach, a special education teacher who knew Curtis in first grade when his behavior was all over the place.

She credits the TCU camp, his grandparents, and the youngster himself for the turnaround. “He’s real smart and competitive,” said the teacher. “At the [Scrabble] tournament he maintained his behavior better than many of the other kids.” These days Curtis takes medication to curb the convulsive tics of Tourette’s syndrome and contributes in class without being disruptive.

He will soon be starting after-school softball. “He participates in everything he can possibly manage. He has managed to stay on the honor roll, and I credit Karyn for that.” said his grandmother. “That whole program has done him a world of good.”

The TCU researchers, thrilled by the improvements they saw in camp, became convinced that a profound physiological change had to be happening underneath the behavioral shift. To test their hunch, they started measuring levels of cortisol, a brain chemical considered a stress “marker” that can be monitored through saliva tests. Indeed, they were excited to see that over the weeks of camp, the children’s cortisol levels came down and stayed down.

In 2003, Cross and Purvis were asked to provide local support to a Fort Worth family going through a home program led by Virginia neuropsychologist Ronald Federici. This particular home program, involving an at-risk child called Dane, was documented on an NBC Dateline segment.

Biochemistry researcher Gottfried Kellerman, who saw the tv segment and obtained Dane’s neurochemical profile, contacted Cross and Purvis to share his worry that the boy was currently being abused, because the biochemistry levels looked wildly dysfunctional, especially the levels of neurotransmitters — substances that control excitability, depression, and aggression. The TCU professors assured Dr. Gottfried that in fact Dane’s adoptive home was loving and stable. They concluded that his neurotransmitter levels were still out of whack because of earlier mistreatment. The three got to considering how abuse can leave a legacy in a child’s brain, and a research collaboration was hatched.

Kellerman is CEO of Neuroscience, Inc., a Wisconsin company that produces nutritional supplements designed to boost and optimize neurotransmitter levels in the body. Neurotransmitters interact in a carefully synchronized dance. Some neurotransmitters stimulate us, while others, like serotonin, soothe and calm us down. The right balance is crucial to good mental health and appropriate behavior.

As part of a collaborative study with Neuroscience, the TCU researchers followed the biochemistry of 97 adopted children. Through urine tests, they tracked eight different types of neurotransmitters and mapped those levels against the children’s behavior. Cross and Purvis say that theirs is the first study to track so many neurotransmitters in this context.

Initial results confirmed what they had found with Dane: The vast majority of the adopted children, even while living in a stable new home, still had the neurochemical fingerprint of their early abuse. Physically, their bodies and minds remained overstressed and were not functioning optimally. For example, virtually every child came into the study with low serotonin levels.

In another striking example, the children averaged three times the normal level of phenylethylalanine (PEA). “At normal levels PEA has to do with creativity and good thinking,” said Purvis, “but at high elevation it has to do with psychotic disorders.”

Using Neuroscience products, the children received TAAT (targeted amino acid therapy) treatment, which provides nutritional supplements that can be used by the child’s own body to create the specific neurotransmitters they need. “These are products you could buy under 20 different names in any grocery store,” explained Purvis.

At first the kids’ depleted bodies couldn’t handle the flood of needed neurotransmitters. So they were switched to slower release and more individually customized forms of the supplements, which were tweaked as needed

Over the course of the study, the researchers saw that aggressive, delinquent behavior correlated with certain levels of two neurotransmitters (dopamine and histamine). Other conditions, like attention problems and anxiety also could be predicted by neurotransmitter levels.

Purvis marvels about how much they’ve learned about complicated brain chemistry as a result of the TAAT study. “It’s really an exponential advance,” she said. Cross has documented the initial results in a report that will soon be reviewed by a panel of experts. A follow-up report will examine the interplay between behavioral treatments and the supplements.

Perhaps the most telling result is that 20 percent of the test families were so delighted with the results that they begged for their youngsters to continue supplementation even after the two-month study was finished. These families have been referred to local certified nutritionists to continue treatment.

The Frisks are among them.

As first-time, older parents who themselves grew up in Leave It to Beaver-style households, Bill and Betty Frisk had no clue about how to deal with their adopted son Ricky’s unpredictable outbursts. It felt like walking on eggshells.

“Everything would be fine, and then he’d go off a cliff, yelling, kicking, screaming, scratching, and yelling ‘I hate you.’” said Bill of their 3-year-old. “It would come out of left field.” Things only got worse when a new sister was brought home from Russia. The frazzled family sought medical help to figure out what was driving the emotional rollercoaster. The boy was medicated for ADHD, but the Frisks were never completely confident that this was the right diagnosis. Something didn’t quite fit.

After attending seminars presented by Purvis and Cross in Fort Worth, it dawned on the Frisks that Ricky’s rages — which continued even on ADHD medication — were not ordinary kid stuff. They strongly suspected that the boy, raised in a Russian orphanage, had attachment issues. The Frisks cleared their summer 2004 schedule and embarked on a home program led by Purvis.

Ricky and his parents both learned important lessons from the program. The son learned to trust and respect his parents and to communicate his needs, easing the need for angry outbursts. The parents learned proactive, nurturing techniques that help him feel secure. His mom, Betty, said the program showed her the real meaning of unselfish love — doing what is best for a child’s long-term development, despite the upheaval or personal difficulty for her.

With the help of his parents’ enhanced skills, the attachment work, and nutritional supplements, Ricky is now off the ADHD medication, and his behavior has improved. On a recent sunny Sunday, he did his best to wait patiently for a promised football toss while his father spoke with the Weekly. The boy showed no anger, only excitement at the prospect of time with his dad. While the boy waited, his mom encouraged Ricky to get a protein snack to keep his blood sugar levels stable. His younger sister played happily on the swings.

“We’ve come such a long way and are on a forward journey,” said Betty Frisk.

.