Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: WEDNESDAY, July 11, 1990 TAG: 9007100261
SECTION: CURRENT PAGE: NRV1 EDITION: NEW RIVER VALLEY
SOURCE: SU CLAUSON SPECIAL TO THE ROANOKE TIMES & WORLD-NEWS
DATELINE: CHRISTIANSBURG LENGTH: Long
But as he walks away with his mother, he whispers, "Don't tell them I live in a treatment center."
Since Jacob was first diagnosed as a childhood schizophrenic five years ago, he has spent much of his time in treatment centers in Virginia and North Carolina for a disorder characterized by frequent tantrums, irrational fears and perceptual difficulties.
Over the years of treatment, he has developed an impressive vocabulary of clinical terms. Words such as "client," "process," "rational," "emotional" and "appropriate" are part of his everyday language. Equally impressive is the list of labels he has acquired over the years.
"The first one was `schizophrenic,' " says his mother, Rita Sumler. "I couldn't say or spell it, let alone tell you what it meant. Then, we went to Dejarnette [Children's Psychiatric Center in Staunton], where they said he had a pervasive development disorder along the lines of autism. Then at Bridges [Treatment Center in Lynchburg], he had an atypical developmental disorder. But his discharge says he has a schizoid personality."
Now, at Roanoke's Children's Center, he has a new diagnosis - atten tion deficit disorder without hyperactivity. Schizophrenia - a mental disorder characterized by hallucinations, bizarre thoughts and perceptual difficulties - has not been totally ruled out.
In a 1988 interview, Jacob was frightened by the sound of birds in a distant tree that distracted him to tears. He sensed monsters in the crumpled shape of his washcloth, the hum of the refrigerator and the ring of darkness around his night light.
In five years, his mother, who is divorced, has learned a lot about the labels that are attached to people with Jacob's illness. And she's also learned not to let them limit her hopes for her son.
In recent years, the diagnoses have been progressively more hopeful.
In his angriest, most frustrated moments, Jacob uses his early label as an excuse. "I can't do that," he shouts. "I can't help myself. I'm just a schizo."
"And I tell him, `You can do it if you try,'" his mother says. "`It may take longer. It may be harder for you to stay in control. But you can't use it as an excuse. You just have to work harder than others.'"
For the last six months, Jacob's chair-throwing, screaming, crying tantrums have become fewer and fewer. Rita Sumler thinks it's due to the Children's Center, the only children's treatment center in the state to integrate children into the community while providing therapeutic services.
Gina Williams, coordinator of services at the center, says the treatment Jacob has received over the years has probably also augmented his maturing sense of reason. As he develops more self-control, he gains more self-esteem. The medications he takes block out hallucinations and those he takes to reduce anxiety have helped too, Williams says.
During his three-month attempt at public school in 1987, Jacob disrupted the class with hitting, kicking, and profanity-spewing tantrums. Sumler took him to Bridges as soon as the facility agreed to accept its first under-12 patient. At Bridges he was taken off all medications prescribed to control his hallucinations.
Two years ago, Sumler thought Jacob would probably spend the rest of his life in institutions. Her dreams for her son reach higher now.
"I can see him living in his own apartment near mine," she says. "I could help him with his food and laundry, but he could have his own schedule."
Williams at the Children's Center says Sumler's care is one of the main reasons why Jacob has progressed so rapidly.
"He has a strong advocate in his mother," she said. "Very few of the disturbed children we see have families who visit them."
"That's the story everywhere Jacob goes," Sumler said. "If the children aren't removed by the state, the families turn them over to the state. Families can't provide for them financially or emotionally without community support. We need to find ways to help them keep their children without being overwhelmed."
The stress of leaving a child even temporarily in the care of an insititution can be tremendous.
At the Lynchburg center, Jacob refused most of his food and seemed to become more fearful, a phenomenon that Sumler attributes to the removal of his medications.
After much deliberation, Sumler took him last fall for his second interview at the Children's Center, a Mental Health Services of the Roanoke Valley agency. Two years before, he had huddled in the corner, hallucinating and mumbling to himself. Center officials had considered him too psychotic for effective treatment, but now they thought he could benefit from a stay with them.
Upon a psychiatrist's recommendation, his medications and home-visit privileges, which were not allowed at Bridges, were restored.
In the rambling old mansion where treatment, school, dining and residential facilities are housed, Jacob's appetite returned. He began to form friendships with the other children, most of whom spend their days in public school classrooms. Jacob and another little boy have been working at developing self control during homebound instruction at the center.
The center's education coordinator, Mary Catherine Baldridge, decided that Jacob, who learns very quickly and is at grade level in his subjects, was ready for the transition to public school.
After a careful search for the right teacher, Baldridge put him in a special classroom for two hours a day. The change was difficult for Jacob, so she accompanied him for the first few weeks.
Socially, Jacob has blossomed at the center and has learned to play with other children. He has been president of the club he helped to name, the "Party Turtles," whose emblem looks suspiciously like the Teen-age Mutant Ninja Turtles.
Williams is particularly impressed with his ability to avoid fights. "He was racing toy cars with another little boy the other day. When his car went over the imaginery finish line, he yelled, `I won.' The other little boy, cried, `No, I won.' Jacob said, `We both won.'"
The change in Jacob's physical appearance alone has been dramatic. As he has matured, his features have become softer, more appropriately childlike. He looks more trusting. Now, when a person enters his room, he makes contact instead of staring off into space.
The most noticeable change is in his mouth. It turns up.
"Yes, he's happier," says his mother. "He's feeling a lot more positive about himself."
Rita Sumler has learned to be grateful for small things: a tantrum averted, a hug from a friend, a small display of Jacob's independence. She is proud to see her son sit through a church service or venture outside the apartment door by himself.
In the years since Jacob has become the focus of her life, many dreams have dropped by the wayside for the divorced bookkeeper - the dream of owning a home, a new car, of going back to school. Jacob's medical costs have exceeded every insurance policy she has ever owned. Even during the years when Sumler earned a good salary and had union benefits from AT&T, she found the imminent layoffs were actually a blessing - now a lesser paying job allows Jacob to qualify for the most inclusive Medicaid and disability payments.
"It's sad when mental health care is just not within reach of the average citizen," she said. "You're lucky if you can get even have the coverage most companies provide for general medical treatment."
The strain of juggling the demands of giving Jacob the special attention he needs, caring for her older son and making ends meet on her salary could have wreaked havoc on the emotional life of a woman who was not as strong, but Sumler has learned to handle it philosophically.
"The Bible says the Lord never gives you more than you can handle," she says. "I just think how much luckier I am than those parents whose children are missing. Jacob is here and alive, so there's hope."
The counselors who have helped Sumler handle Jacob have helped her deal with her own stresses, she says. "I've learned to put everything out of my mind but the immediate. When I'm working, I'm concentrating on just that, not worrying. When I'm going to sleep, my mind is empty of everything else."
Some chores just fall by the way. "The important things are family and friends. You learn that when things get rough," she said.
And she did a little searching in her own family tree. She found that her own grandmother had "not been right," according to relatives and neighbors, and had died at Southwestern State Hospital in Marion where she had been classified a "paranoid schizophrenic." In a cruel spin of genetic roulette, the defect seemed to have skipped over two generations and lodged itself in Jacob.
But Sumler can do nothing about that, so she takes one day at a time. And she's grateful to the relatives who often look after Jacob on Saturday evenings to give her time for her one indulgence - going out dancing.
Sumler's latest challenge is how she will care for Jacob after his discharge in September. She needs to make arrangements for after-school care, school transportation and respite care.
Finding care for emotionally disturbed children is never easy. The last time Jacob was home, he exhausted a string of baby sitters.
"If we don't find any care, it looks like I'll have to leave my job to stay home and take care of him," Sumler said. "I'd hate to do that. My boss has been very flexible about letting me rearrange my schedule to visit Jacob at the center."
Sumler hopes she can find other options. Several weeks ago, she met with the children's center staff and Montgomery County school staff to plan for Jacob's return. They talked about possible part-time foster care after school and on weekends when Sumler needs a break.
Chistina Gilley, director of special education at Montgomery County schools, says her office will apply for a grant to hire a trained caretaker. But nothing is definite.
The school system has been paying for Jacob's specialized care in Roanoke as part of its responsibility for his education. Gilley says Montgomery County has three children in similar residential situations because their needs cannot be met in the county.
"Our goal is to get him back home," Gilley says. "We know he wants to be with his momma and live as much like a normal child as he can."
Sumler has the same hopes for Jacob. "Sometimes it's so sad though, that his disability keeps him from enjoying life more."
Recently Sumler took Jacob horseback riding at a friend's home in Riner. He was so afraid of the horse that they had to spend a half-hour petting the animal before Jacob would agree to sit on the saddle. When they led the saddled horse over to Jacob, he ran away crying.
Eventually, he did sit on a pony for a few minutes. For that feat, Sumler took him out for ice cream.
"You did a good job," she told him. "You tried even when you were scared. That's a lot for anyone."
by CNB