Concern That Speaks Volumes

Because she didn’t want other parents to have to start from scratch, Maureen Wiles of Los Alamitos spent the better part of a year poring over brochures and newsletters and obscure journals, compiling what is believed to be one of the most comprehensive sources of information in Orange County for parents of children with special needs.

Wiles, whose 19-year-old daughter Heather suffers from spina bifida, a physical disability affecting the spinal column, put together an 11-volume set of 3-inch thick binders to serve as a database, an encyclopedia and as a way to comfort parents who might feel alienated by their child’s disability.

The Los Alamitos Unified School District’s PTA Council asked Wiles a couple of years ago to create the library, which is housed in the Los Alamitos-Rossmoor Public Library. Often, parents of children with disabilities--whether it be as subtle as mild attention deficit disorder, or as obvious as blindness--wander about unsure of what to do or where to go for guidance.

“The information is usually very scattered,” Wiles said. “Without a place to start, a parent could be very lost. I didn’t know where to go when my daughter was young. It took me years of learning. The purpose of the library is very simple: It’s meant to be a good starting point.”

On the cover of each binder, a disclaimer for readers advises that the binders aren’t meant to be the be-all and end-all resource for parents. In effect, they might as well be.

The library ranges from articles about Williams Syndrome, a genetic disorder causing medical and developmental problems, to phone numbers for California chapters of the national Learning Disabilities Assn. to simple guidelines for determining if a child has dyslexia. If a parent wants to know when to attend the next meeting for manic-depressives in Long Beach, the binder even offers times. Specifics about the Americans With Disabilities Act of 1992 fill two file folders.

Experts say they don’t know of any similar one-stop libraries.

“I think it is absolutely fantastic that we have such a thing,” said Joyce Powell Riley, co-president of the

Orange County Learning Disabilities Assn. “It’s nonthreatening and gives people the chance [to take] that intimidating first step of the learning process. I admire Ms. Wiles for taking the time to do it. I don’t know of anything else like it.”

Powell Riley said the library is important because parents often feel guilt, shame or embarrassment about a child’s disability; they often are afraid of asking another person about it. The library, she said, “is valuable for parents who can go sit down and go through all the information at their own pace.”

Kim Nissen, branch manager for the Los Alamitos-Rossmoor Public Library, said that was part of why she dedicated two shelves for the binders.

“A parent can come in and not have to worry about talking to anybody,” she said. “They can privately do their research.”

Wiles, who volunteered her time to complete the project, placed her first binders on library shelves at the beginning of 1999 as she continued to research and build materials. The collection is nearing completion now, although Wiles said it will forever be a work in progress and a labor of love.

She spent the better part of a year calling associations and groups that assist parents with children who need special education.

Her mailbox was stuffed daily with pamphlets and catalogs. She then began to create general categories for the volumes; eventually, she said, she wanted to make sure the library covered children from toddlers to adulthood. The binders, which weigh several pounds each, are thousands of pages long.

“The thing about the library is that it’s constantly changing,” Wiles said. “The information is always different. It needs constant maintenance. It really is a living breathing resource. I’m always making sure it is up to date. . . . But that was the point.”

The collection is open to all interested parties at the Los Alamitos-Rossmoor Public Library, 12700 Montecito. Hours are noon to 9 p.m. Monday and Tuesday, 10 a.m. to 6 p.m. Wednesday, and 10 a.m. to 5 p.m. Friday and Saturday. The library is closed Thursday and Sunday.