GOOD PARENTS, BAD RAP : Coping With a Disturbed Child : A Young but Growing Support Group Helps Families Ease the Loneliness, Frustration and Feelings of Guilt

Once, Norm and Ellen Linder might have listened to people who blamed them for the violent outbursts of their behaviorally disturbed son.

Not anymore.

“Even now that Marcus is living in a group home, we still get calls about the latest thing that he’s done and people telling us what rotten parents we are,” said Ellen Linder, walking along the corridor of the family’s new Moorpark house and opening the door to her 16-year-old son’s empty bedroom. “Their attitude is, ‘You must have done something really awful to have a kid like that.’ ”

If the Linders have their way, that attitude will change.

Eight months ago, the couple realized that, with an estimated 2,500 children and adolescents in Ventura County who receive mental health services each month, they probably were not the only parents who felt frustrated, stigmatized and alone.

Encouraged by mental health professionals, the Linders called parents they had never met and invited them to join what several counselors and educators said is one of the first support groups in the state for parents of mentally, emotionally and behaviorally disturbed children.

Since its inception in June, United Parents’ membership has grown to 30 couples, single parents and foster parents who meet each month at the Camarillo public library.

In the beginning, Ellen Linder said she thought the round-table discussions would simply be a place where parents could share their problems and listen to the experiences of others. The initial response of parents, she added, did nothing to change that view.

“One woman at one of the first meetings just burst into tears,” she said, recalling what she described as a typical response for many families. “She said, ‘You don’t know what it means for me to be able to come here. How many people really understand when you tell them you’re afraid of your 10-year-old?’ ”

But it soon became apparent that the group had the potential to be much more. Roused by repeated stories of confusion, intimidation and frustration, many group members said they realized that emotional support alone was not enough. To ensure that their children received the best possible services, they said, the group also would need to learn how to work more effectively within the public school and mental health systems, as well as become involved in state and national legislation affecting children’s mental health issues.

That decision, many mental health officials say, led to a vitally needed advocacy group.

“This is brand-new. It’s what’s been missing,” said Mario Hernandez, chief of children and youth services with Ventura County Mental Health. “There are all kinds of groups for handicapped adults and children, but until now, there really hasn’t been anyone to speak up for these kids.”

Hernandez said county mental health officials and social workers had wanted a parents’ support and advocacy group for several years, especially when it became clear that many emotionally and behaviorally disturbed children had poorer outcomes and often required longer out-of-home placements when the needs of the entire family were not addressed.

Parental involvement also was a major consideration, he said, when the county developed a model children’s mental health program in 1985, which was designed to identify emotionally disturbed children who were at risk of being separated from their families.

“The county’s program basically took down the walls between the people in the schools, the mental health department and the juvenile justice system and told them all to talk to each other and work together for the benefit of the child,” said Norm Linder, whose efforts on behalf of emotionally disturbed children recently earned him the distinction of being the first parent of a disturbed child to be appointed to the county’s Mental Health Advisory Board.

“At the same time,” added Linder, a Simi Valley marketing director, “one of the goals of the program also was to get more parental involvement, since a better-informed parent is like having a co-therapist for the child.”

Although counseling services for parents of disturbed children are still limited, the county’s program has had success. In recent years, California’s cost for keeping emotionally and behaviorally disturbed children in group homes has skyrocketed to $36 million each month--up from $15 million a month in 1986. In contrast, Ventura County’s nationally praised program has helped keep the most severely emotionally disturbed children with their families and has reduced out-of-home placements to the lowest in the state.

“But these are only the most severely disturbed kids,” Hernandez added. “There are still plenty more kids and families who need help and haven’t been getting it.”

Hernandez said he suggested that the Linders form the support group because of their reputation within the mental health community for being “outstanding and informed.”

But it was the couple’s experiences, not their reputation, that attracted other parents to the meetings.

Marcus, the oldest of the Linders’ four children, was 4 when a preschool teacher first contacted the couple about his over-aggression and inability to get along with other children. Two years later, when he was in the first grade, Marcus’ problems were diagnosed as stemming from a learning disability. School officials assured the couple that he would eventually outgrow his behavioral problems.

“By the time he was 10, he was chasing his younger sister with a butcher knife, destroying objects in our home, verbally abusing teachers and throwing chairs in the classroom,” Norm Linder said.

The strain on the family, whose residence is also home to four Old English sheep dogs, numerous chickens and a talkative parrot, was beginning to show. “Whenever Marcus walked in the door the other kids went into their bedrooms and closed their doors,” his father said.

The Linders said they did their best to ignore people who called them bad parents. But they also came to accept the fact that nothing they tried as parents did any good. Punishing Marcus was about as effective as using a megaphone in an empty room. Rewards, they said, were equally as useless.

Finally, three years ago the couple placed Marcus, then 13, in a residential treatment home. He later spent a year at Camarillo State Hospital, where professionals sought to help him control his inexplicably violent outbursts. After a brief but unsuccessful attempt at living at home again, he is now in a Simi Valley group home for emotionally disturbed teen-agers.

“I’m a lot better now, but I still have this problem,” said Marcus, who knows about his parents’ involvement in the support group and was eager to share his story if it might help someone else. “I don’t know why it happens, but when I get mad, all hell breaks loose.”

Gregg Cook, a Moorpark contractor who was one of the first fathers to join the parents’ group, said the Linders’ story encapsulates many of the things he has gone through. For eight years after his divorce, Cook raised his two children alone and struggled to cope with one son’s learning disabilities and behavioral problems.

Like the Linders, Cook said he also experienced the regular phone calls from school asking him to come get his son, who often pounded other children’s heads on the pavement in a rage. Cook said he endured barbed comments from neighbors and other family members who blamed him for his son’s wild behavior. Once, Cook said, a teacher asked him, “How could you allow your son to act like that?”

“I had a lot of guilt because I really fell apart after the divorce and I knew there were things I did wrong as a parent. So I really did start to believe everything was my fault,” he said. “Also, I think I was in denial for a long time. . .because it’s hard to admit there is something wrong with your son. You don’t want a label on him.”

Since joining the group, Cook, who remarried a woman with two sons 18 months ago, said he found out about resources he didn’t know existed. His son is now attending the county’s day treatment school in Camarillo and “is doing incredibly well.” His son has calmed down, has come up two grade levels in less than six months, and his self-esteem has risen proportionately.

“I can’t even begin to tell you what this group has done for all of us,” Cook said. “You go through this for years by yourself, and then it’s such a relief to find out there are other parents struggling with the same things.”

At a recent meeting of United Parents, a dozen men and women greeted each other at a table laden with cookies and coffee before making their way to chairs placed around the room in a U. In the few moments before county Supervisor Susan K. Lacey arrived to speak on funding issues related to children’s mental health, several members updated each other about what had been happening to them during the last month.

One woman said she had been housebound with her child, since no baby-sitter was willing to take care of him anymore. Another told in a quavering voice how she had been hospitalized for exhaustion after her schizophrenic 6-year-old was admitted to a psychiatric hospital. A man standing beside his wife said his marriage was strained to the breaking point.

But while their situations varied, most parents said one of the most difficult burdens was the perception that their children’s problems resulted from a dysfunctional or abusive background.

“I took him to a counseling center in the San Fernando Valley when he was 6, and they told me it was because I was a single mother and had boyfriends,” said Debbie Simpson of Simi Valley, whose manic depressive son entered Camarillo State Hospital three years ago at age 11. Simpson, who remarried several years ago, said she sought help for her youngest son’s emotional problems a year after her older son, then 7, died of encephalitis. She said she was terrified she would lose custody of her remaining son if she took him for more counseling. “They just assumed it was because of me,” she said.

Social workers say the view that families are at fault for a child’s emotional problems isn’t always unfounded. Amy Balchum, a former children’s caseworker who works as the family liaison at Phoenix School, the county’s day treatment center for children, said physical or emotional abuse often has been present in a disturbed child’s family.

“Basically, if you can imagine a background, we have seen a child who comes from it,” she said.

But Balchum and other experts stress that there are numerous other cases in which there is no identifiable cause for a child’s emotional problems. Other times, she said, the stress of having an emotionally disturbed child may have led to a family’s dysfunction.

“There’s been a lot of research that supports the idea of neurological and genetic factors with many of these children, but I think the public’s perception is still that all of these kids are just bad,” said Don Kingdon, supervisor of special education and mental health subsystems for Ventura County public schools. “The families get a lot of the blame.”

But whether their children suffer from uncontrollable outbursts of aggression, manic depression or schizophrenia, parents in the group said they are more concerned with finding a cure than a cause. And to help other parents avoid their own mistakes, several members said they sought to discover any common bond of experience.

When they compared notes, many parents said they realized that they suspected their children had some type of emotional problem as early as age 3 or 4. Often, however, it wasn’t until their children’s schoolwork began to suffer--or their children became so disruptive that teachers could no longer keep them in a regular classroom--that administrators listened to what they had been saying for years.

In addition to emotional or behavioral problems, many of their children also were found to have learning disabilities, including dyslexia, attention deficit disorder and hyperactivity.

“I’ve been told that there is no solid connection between learning disabilities and emotional problems, but I’m convinced that 80% of my daughter’s problems stem from learning disabilities that weren’t addressed early,” said Madeline Sullivan, a Newbury Park widow who said her teen-age daughter recently attempted suicide and now is in a psychiatric hospital in Long Beach.

“She had dyslexia and couldn’t process information the way normal children do, but her teachers didn’t understand she couldn’t keep up. They got angry at her,” Sullivan said.

Like many of the parents, Sullivan said she never knew until she joined the support group that she had a legal right to ask for an evaluation of her child and that the school was obligated to comply. She said she also was unaware that she could disagree with the proposed educational plan for her child.

“You are so confused and you feel so alone,” she said. “You just sign whatever they put in front of you to sign.”

Simpson, whose son recently returned home and will attend a public school in the spring, said she tries to forgive herself for being timid about finding services over the years.

“I knew there was something wrong with him, but you trust the teachers to be the experts and to know more than you do,” she said. “The only thing I ever got was a letter saying he was probably eligible for mental health services, but I never heard anything more. I didn’t know what to do, and I was afraid to push for anything.”

Today, Simpson and other parents say they know better. They are learning to push for services for their children and to speak up when they don’t understand. They are writing letters to Congress, urging the passage of a bill that would provide states with funds for children’s mental health programs. And they are asking mental health officials what they can do to ensure that existing mental health programs don’t get cut.

“We need a lot of things,” said Ellen Linder. “We need professionals to start listening to parents, because if a parent says there is something wrong with their kid, they’re probably right. We need to stop blaming and concentrate on helping. We’re also going to have to be creative in finding services, combining services and establishing new services.”

The group is also looking at ways to expand membership. In addition to putting out a monthly newsletter and inviting a guest speaker every other month, Ellen Linder said United Parents hopes to provide child care so parents who have exhausted their list of baby-sitters can attend the meetings.

“It’s hard to pick out which things are the most important for us to do first,” she said. “Right now, there’s so much.”

Hernandez, with Ventura County Mental Health, does not find that surprising.

“Remember way back when parents of retarded children used to feel stigmatized and ashamed and had to fight on every level to have their children recognized?” he asked. “It took a lot of years for that to change. But that’s where these parents are right now.

“They’re at the very beginning.”