The stares don`t bother Chase Pratt as much anymore. They don`t force him to hide in his room, or provoke anger that alternately fueled fierce temper tantrums and withdrawal so severe that he wouldn`t talk to anybody.
Instead, 12-year-old Chase explained matter-of-factly, he is trying hard to let people ”get to know me on the inside. On the inside, I`m a nice guy.
”I`m a lot friendlier than I look on the outside,” he said. ”My inside self is happy. I look like other kids on the inside.”
On the outside, even after 46 surgeries, Chase Pratt looks different, and he knows now that even after the additional planned surgeries, he will never look quite like other people. Chase was born with Crouzon syndrome, a rare genetic mutation that caused his skull and face to develop abnormally. His eyes are overly prominent, his upper jaw unusually small. All his features appear askew.
”When I was younger . . . (the kids) would all look at me, and they wouldn`t want to play with me,” Chase recalled. ”They were kind of scared of the way I looked. I would get upset.”
But for the first time in his life, Chase Pratt is feeling pretty good about himself. He`s making friends in his neighborhood in far west suburban Lakewood, where his family just moved, and the tantrums have all but disappeared. He had a wonderful time at camp, and he`s excited about attending a new school this fall. ”He`s like a different child,” said his mother, Rickie Anderson. She said she is feeling better about things than she has since Chase was born.
”We`re not groping anymore,” Anderson said. ”We`re coping.”
”I don`t wish it were different anymore,” Chase said. ”I`m just going to stay how I am and be okay.”
Chase and his mother credit a small, first-of-its-kind program at the University of Illinois College of Medicine for the dramatic changes that have made their lives so much happier.
In group sessions with their peers and then with their parents, children aged 10 through 16 who have a facial difference-from a cleft lip and palate to a condition such as Chase Pratt`s-are being taught by psychologists at the Center for Craniofacial Anomalies how to overcome their social inhibitions and to develop a more favorable self-image.
”All children face teasing at some point,” explained Kathleen Kapp-Simon, the clinical psychologist who developed the social-skills program and who also is the mother of three. ”All children can have difficulty making friends. It`s a part of childhood. But when the child has something that makes him stand out, that makes him different, the challenge is that much greater.” This is particularly true when these youngsters hit adolescence, Kapp-Simon noted, when appearance makes the most difference, when all youngsters are desperate to look exactly alike.
”We think it would be great to walk into a room and look so great that everybody would stare,” explained Rick Uppling, another psychologist involved with this program. ”All these kids want is to walk into a room and not have a negative reaction.”
Now through discussions, drawing and role playing in 12 sessions of 90 minutes each, the children, who come from all over the Chicago area to participate in the free program, are learning to handle the inevitable stares and teasing, the endless medical procedures and, for the first time, to facilitate friendships.
At the same time, their parents are being taught to reinforce the youngsters` new skills and to cope with their own feelings about the children`s disfigurement and special needs. For example, Anderson said that were it not for the other mothers` advice, she never would have taken the initiative to explain Chase`s condition to her new neighbors before they saw him.
”Before, I would have stayed in the house, and when he walked out the door, I would have crossed my fingers,” she said. This time, thanks to her efforts and Chase`s new social skills, the family has felt welcome among the new neighbors and their children.
”Because a person`s eyes or nose aren`t right doesn`t mean they see the world differently,” Anderson said. ”They still need the warmth of friendship and acceptance.”
The National Easter Seal Society has just begun an unprecedented national campaign to get that same message to preteens and teens across the country:
that kids with disabilities are just kids.
”I felt like the time is here,” said Sandi Gordon Perkins, who is spearheading the Chicago-based Easter Seal Society`s effort. ”If we want life to be better for these kids (with disabilities) when they grow up, let`s start with kids and make them realize how hurtful it can be to be called names and not be accepted. . . . If we can change their perceptions when they`re 10, when they`re hiring people or building buildings, they`ll think differently about those with disabilities.” (See accompanying story.)
Kapp-Simon is working toward that same goal with her program but from the other side. She is convinced that social skills can provide the key.
Research shows that social inhibition is characteristic of children who are facially different and physically handicapped from birth, Kapp-Simon explained. ”People are initially uncomfortable (with them), and the child reacts to the response by withdrawing,” she said.
The ramifications can last a lifetime. Kapp-Simon said studies show that fewer of these youngsters marry and that they hold lower-paying jobs. Parents often have lower expectations for them, though they have normal intelligence. ”These children are not impaired,” Kapp-Simon said firmly. ”They can be what they want to be-if we can get them over the social hump.”
This is being done in her program with patience and sensitivity. The other day, as their parents were meeting in an adjacent room, four children with various facial abnormalities were discussing with psychologist Uppling how they felt when they saw children they didn`t know on the playground. Too often, Kapp-Simon explained, these children are so geared to rejection that anything less than an enthusiastic response will cause them to withdraw.
The children had drawn pictures of themselves and other children. Then, amid giggles, they were practicing how to approach a child they didn`t know and strike up a conversation.
Tracy Pugh, who is 12, said she would talk about clothes. An 11-year-old boy suggested baseball cards.
In other sessions, Uppling had taught them the importance of body language, of looking someone in the eye and smiling. They had rehearsed how to react if someone called them ”retard” or ”monkey.”
”I learned to say it`s not the right time to call me that,” said one 11-year-old.
Others said they know now that they can respond with a joke, walk away or tell an adult, that there`s no need to hide or become angry. Once recently, for example, 11-year-old Mike Ramirez, who was born with a cleft lip and palate, was shopping with his mother when a man called him a ”stupid retard.”
Mike turned to the man and said, ”May God help you,” his mother Chris recalled during the parents` session. The name-caller was left completely flustered.
”He`s defending himself now,” she said proudly. ”I don`t have to say anything anymore.”
For many of these children, their parents and physicians note, this is the first time they have been given the opportunity to discuss feelings and fears with other such children. They likely are the only child in their school with the problem.
”This helps me to realize I`m not the only one to have these problems,” explained 9-year-old Keshia Collins, who was born with a cleft lip and palate and some malformations of her fingers and toes.
Uppling explained that it`s one thing for adults to tell children how to approach another child or how to handle teasing, ”but it has a lot more potency and more authority when they hear it from their peers.”
Chase Pratt, for one, said he`d never had a chance before to compare notes with other kids about how scary operations are, even after 46 of them. He also talked about his anger at being stared at, when all he wanted was to be a regular kid-to play basketball and video games, to go to the movies.
”The whole point of this is to get the children to believe in themselves, that they are likable,” Kapp-Simon said. ”Part of this is to help them reach out and to help other people get beyond their faces. But also, if they are reaching out and thinking about someone else`s feelings, they won`t be as self-conscious. It`s very basic.”
Curiously, Kapp-Simon originally designed her program for adolescents in Chicago`s parochial schools who had no special problems. ”The idea was to teach psychological health: how to deal with problems and how to improve friendships,” she explained.
It was only 18 months ago, when she and the other staff at the Center for Craniofacial Anomolies were discussing ways to help the children being treated there, that Kapp-Simon realized she had a vehicle in hand-and one that likely could help any child of normal intelligence who is physically ”different,”
whether from a birth defect, a fire or other accident.
The program is being financed by a three-year, $357,000 federal grant, with the idea of duplicating it around the country. She plans a videotape and training manual for other professionals and also is seeking more grant money to develop a program for younger children.
Already, the concept is being used with great success at Chicago`s Spaulding High School for students with disabilities and will be extended this fall to some elementary school children. Spaulding staff members are going to be trained to run the groups themselves. ”Absolutely, this is helping the students to feel better about themselves,” said Darlene McClendon, the assistant principal who oversees counseling services at Spaulding.
The program, which has reached about 60 children, including those at Spaulding, also has been enthusiastically received by parents and doctors at the University of Illinois Hospital and has prompted considerable interest nationally, said Dr. Michael Schaefer, chief of plastic surgery at the University of Illinois Hospital.
”Techniques are available to make profound improvement in (these children`s) physical appearances,” Schaefer said. ”Now we have to make sure we keep pace with their psychological well-being.”
”Ultimately,” Kapp-Simon said, ”their social skills will be more important than their deformity in determining the kind of life these children will lead and how they are received.”
Just ask Chase Pratt. ”I don`t know what`s normal,” Chase said. ”All kids are different.”
