FAMILY LIFE : Hot Topic : Parents are desperate for information about attention-deficit disorder. Support groups fill the gap.

Maureen Kaye and Cheri West envisioned a sort of fireside chat with other parents of children with attention-deficit disorder when the two Simi Valley mothers decided to form a support group.

But on the night of the meeting, about 250 showed up. Kaye and West had been expecting no more than 40.

“It was like Greyhound buses were dumping people off there,” Kaye said. “People came in anyway. They were hanging from the rafters.”

The turnout testifies to the increased interest in attention-deficit disorder (ADD) over the last few years. Characterized by inattention, impulsiveness and sometimes hyperactivity, the disorder has been a hot topic for researchers as well as educators and parents.

The interest is so high that the national organization CHADD (Children with Attention Deficit Disorders) has mushroomed from 30 parents in 1987 to about 20,000 members in almost 450 chapters, according to a spokesman. The group is growing at the rate of 800 members each month.

CHADD of the Conejo Valley formed in 1991 and now has more than 250 members, making it the second-largest chapter in California. Another, CHADD of the Gold Coast, started up a year ago in Ventura and has about 20 members.

Because of that interest, psychologist Judy Welch, who helped found the Conejo chapter, worries that it is being over-diagnosed, and that some children are labeled ADD without a thorough evaluation.

“It’s a very complex disorder and needs to be looked at very carefully,” said Welch, who specializes in ADD.

Kaye and West, both active in the Conejo Valley chapter, couldn’t agree more. They see parents “desperate for information” about ADD. They get it from the monthly CHADD meetings, where professionals speak about the disorder.

The women saw a need for a similar outlet in the Simi Valley area, but they wanted something a little different, something that would let parents talk to other parents about their experiences, Kaye said.

So the women formed AAD-SOS (Support Organization of Simi). The group, which is not affiliated with CHADD, meets each month at Simi Valley Hospital.

They expect the huge attendance of the first meeting to drop, but hope to maintain the parent-to-parent exchange of information and war stories about raising ADD children.

Kaye and West have some stories of their own. They each have two children with the disorder. And, in each family, one of the two is also hyperactive, bearing out the belief that the disorder tends to run in some families.

All four children are taking medication--either Ritalin (the best known), Cylert or one of the antidepressants now used for treating ADD.

Kaye’s son, Mitch, now 15, was 9 years old when he was finally diagnosed with the disorder. School had been difficult because he couldn’t seem to concentrate on his assignments. Homework took hours to complete when it should have taken minutes.

Because of his inattention, he was barred from class field trips unless Kaye or her husband went along to keep him in tow. Medication, Kaye said, helped him “stop and smell the roses. He’s doing OK.”

Kaye’s 10-year-old daughter, Kelly, was causing disruptions in her first-grade classroom when she was diagnosed with ADD and hyperactivity.

“She’s wired for 220,” Kaye said. “She could never sit still.” A bright kid, Kelly now is at the top of her class, her mom said.

With both children taking medication, Kaye said, “it smoothes things a whole lot, but it’s not perfect.”

For West and her husband, it all started when their older son, Branden, now 9, was not yet 2. Day-care operators couldn’t handle him.

“By first grade, we were at our wits’ end,” West said. He couldn’t focus on any task, whether it was brushing teeth or doing schoolwork. He was impulsive, cried a lot, threw tantrums and was difficult to reason with, she said.

After beginning medication, he became an honor roll student, although at times he still shows signs of emotional immaturity, West said.

West’s 4-year-old son, Kyle, is also on medication. As a result, he is less aggressive and hyperactive, she said.

“Before I couldn’t read him a storybook because he wouldn’t sit still for five minutes,” she said. “Now it’s a lot calmer in my house.”

West understands the pain, the frustration and the blame that burden other parents. “They want their children to be normal and healthy. I see why it destroys marriages.”

Wade F. Horn, executive director of Florida-based CHADD, said children with ADD account for about 3% to 5% of the school-age population, with boys greatly outnumbering girls. But girls may be under-identified, researchers believe.

Medication significantly helps about 70% to 80% of them, he said, but other treatment is necessary as well, such as counseling at home and at school. Parents can learn ways to deal with the condition, such as giving children simple rather than complex tasks that bewilder them. Fifty to 60% of the children diagnosed with the disorder continue to have it as adults, he said.

Before parents glom onto the ADD diagnosis to explain their child’s difficulty, they should get a comprehensive evaluation, Welch advises. That might involve a psychologist, a physician, educators and perhaps a neurologist.

Even health professionals have diagnosed ADD prematurely, she said, although this was more of a problem in the past, when the disorder was less understood.

Sometimes other ailments or side effects from medication can mimic symptoms of ADD, she said, listing allergy medication, diabetes, hypoglycemia, nutritional problems, learning disabilities, even sleep disorders. She said she has seen children with hearing problems diagnosed with ADD.

Welch, who was a school psychologist for 10 years and a teacher for six, sees two hallmarks of ADD in addition to the general symptoms of inattentiveness, impulsiveness and, sometimes, hyperactivity.

Many ADD children are disorganized in their schoolwork, forgetful and absent-minded, she said. They may also have poor social skills.

“It’s almost like they have social misperceptions,” she said. “They don’t read body language.”

FYI

* Attention Deficit Disorder--Support Organization of Simi (ADD-SOS) meets 7:30 to 9:30 p.m. the first Friday of each month at Simi Valley Hospital, 2975 Sycamore Drive. For information, call 527-9155.

* CHADD of the Conejo Valley meets 7:30 to 10 p.m. the second Friday of each month at the Thousand Oaks Library, 1401 E. Janss Road. For information, call 520-4943.

* CHADD of the Gold Coast meets 7 to 9 p.m. the third Friday of each month at Vista Del Mar Hospital, 801 Seneca St., Ventura. For information, call 649-2517.

* The Ventura County superintendent of schools office is sponsoring a free parent workshop on attention-deficit disorder under the direction of psychologist Judy Welch. The workshop, 6:30 to 8:30 p.m. March 25, will be held at the county schools’ conference facility, 550 Airport Way, Camarillo. For reservations, call 388-4215.