Family’s Challenge Is ‘a Gift’

Teri Burley scanned the exhibitors’ tables. There was a metronome-like device intended to help children improve their attention spans and coordination. There were dozens of books containing the latest research on a disorder that affects thousands of children like her two sons.

“It’s like a candy store here,” Burley said as she surveyed the Anaheim conference devoted to people suffering from Attention Deficit/Hyperactive Disorder.

More than 1,000 parents of children with ADHD and adults who also are afflicted with the disorder looked for innovations, new drug therapies and alternative treatments at the annual conference, sponsored by CHADD--Children and Adults With Attention Deficit/Hyperactive Disorder.

They also hoped to meet mothers like Burley, who seem to take life with ADHD in stride and with a cheeriness that is contagious.

During the conference “everything else in my life halts,” said Burley, the Orange County coordinator for the nonprofit advocacy group based in Landover, Md. Founded in 1987 by parents of children with ADHD, CHADD has 22,000 members nationwide.

“This is my passion in life,” said Burley, 43, of the conference, which began Thursday and ends today at the Anaheim Marriott. “I’ve made this my life.”

Burley said she came to brush up on the latest research. But she also came to share her story and that of her two sons and husband, who have Attention Deficit Disorder. Her husband, Tim, 45, and their younger son, Tanner, 11, also have been diagnosed with hyperactivity.

“They are a gift,” Burley said. “Nothing is ever the same twice. Every day is a new adventure in our house.”

Burley said she suspected her husband was unusual when for their first date 20 years ago, he took her flying in a Cessna. The pilot followed jetliners taking off from Long Beach Airport and cruised in the larger airplanes’ turbulence.

“I was holding on with my death grip,” she recounted Friday. “It was the real E-ticket ride.”

Burley fell in love with the impulsive auto mechanic with a “certain deviousness in his eyes” and they were married three months later.

Years later, she discovered the source of her husband’s brashness when Tanner, at 2, was diagnosed with ADHD. He had broken his older brother’s arm by pushing him off a jungle gym. ADHD seems to run in families, medical experts say.

The Burleys’ older son, Tayler, now 12, was also diagnosed with ADD.

“I’m the only one who doesn’t have it,” Burley said. “So I’m the oddball in the family.”

Experts estimate that ADHD affects 3% to 5% of school-age children in the U.S. Although symptoms may decrease with age, 2% to 4% of adults also suffer from the disorder. Scientists are unsure of the causes, but research points to possible chemical imbalances in the brain. Symptoms include a short attention span, impulsive behavior and difficulty focusing and sitting still. It may be accompanied by hyperactivity or not. Those without it are diagnosed with Attention Deficit Disorder, or ADD.

“They are looking for answers,” said E. Clarke Ross, the organization’s CEO, whose son Andrew, 11, suffers from ADHD. “The good news is all children grow and develop and make progress.”

A lot more is known about the disorder today than even just a few years ago, Ross said, which gives many parents hope. Nonetheless, a big portion of dealing with ADHD is not just about its treatment, but about how parents cope.

“We don’t know where [Andrew] is going to be 10 years from now,” said Ross, 53. He may never go to college. “That’s probably not in the cards for Andrew. But that is not as important now. Whatever works for him and makes him happy, it is OK by us.”

Burley said she has become an expert at adapting to her family’s situation. The family spends as much as $500 a month on prescriptions for her sons and husband. She gets four to six hours of sleep a night if she’s lucky. But there also are impromptu fish fries and midnight movie runs on a school day.

“So what if you have M&Ms; for breakfast,” she said. “You can catch a good lunch later.”

Burley, who is about to move her family from Whittier to a bigger house in Yorba Linda, has been involved with the Orange County chapter of CHADD for nearly a decade. On Friday, she attended a conference luncheon on how to recruit more volunteers for the chapter, which has 70 members.

She said she tries to offer hope to parents who come to the group’s monthly meetings at the Crystal Cathedral in Garden Grove.

“So many parents are so worn out, so burned out,” she said. “I look older than I am, but that’s OK. I’ve learned to adapt. . . . I have a great life because of my children.”