Raising Thomas

Alex Coolman

COSTA MESA -- Raising Thomas is difficult. In a small apartment on

Joann Street, Terry Meek is trying to figure out how she can keep doing

it.

Meek is pretty sure that Thomas, her 4-year-old son, suffers from a

form of autism. But convincing school district and county officials of

that is proving to be a battle.

And for the widow of Timothy Ray Meek, the Newport Beach dory

fisherman who was lost at sea in 1998, the struggle to get help for

Thomas is more than a fight with bureaucracy: it’s an attempt to hold

together the last remnants of her family.

On a recent afternoon, Meek was sorting through a stack of paper,

forms she’d printed from the Internet. The papers were dense with terms

like “unnecessary institutionalization” and “litigation strategies,” and

Meek looked like she’d had about as much of this kind of reading as she

could take.

Thomas stood at the front door, pulling unhappily at the handle and

complaining that he wanted to go outside.

“In a minute,” Meek told him. “We’ll go and get you some ice cream.”

These kinds of minor parenting tasks -- getting a treat, buying a toy

-- are things 40-year-old Meek can handle. But Thomas, who has

developmental disorders that cause him to be impatient, temperamental and

sometimes violent, needs more than a few gentle bribes.

Thomas needs some professional help. And Meek says her efforts to

obtain it -- from the county and the school district -- haven’t been

fruitful.

Though Thomas, who attends Step by Step preschool, is in a special

education program, Meek is concerned that the school’s approach -- which

focuses on his learning disabilities -- isn’t as broad as it should be.

“It doesn’t treat the behavioral component of his problem,” she said.

The difficulty Meek is having in getting help for her son has its

roots in the nature of his behavior. Though he’s obviously a troubled

child, and though Meek can recite a list of injuries she’s received at

his hands, Thomas’ behavior does not fit neatly into a single diagnostic

category.

The most obvious behavioral difficulties involve his unpredictable

temper and certain physical quirks, such as hand fluttering and

occasionally poor coordination. Meek thinks her son is autistic, and

she’s got doctors to say as much.

But so far it’s been impossible to get county and school district

officials to agree with this diagnosis and to provide the services --

such as a parenting aide -- that Meek says she needs.

The Regional Center of Orange County is the nonprofit agency that

contracts with the state of California to provide services for people

with developmental disabilities. Karen Taylor, a spokeswoman for the

center, said the process of getting services for a child can sometimes be

challenging.

“It’s hard for parents and families, too,” she said. “It can be

overwhelming.”

However, Taylor said the categories used for assessing the needs of

individuals are far from arbitrary.

“It’s very comprehensive, and we do have specific criteria -- medical,

psychological and social assessments -- that are evaluated.

“The needs are determined on an individual basis and we have certain

guidelines that we follow for determining what services” will be given.

“If parents don’t agree, they do have the right to appeal.”

Both the Regional Center and the Newport-Mesa Unified School District

are prohibited from discussing the cases of individual students. But

Patrick Ryan, the director of special education for Newport-Mesa, said

the district strives to provide the best possible care for its students.

“We’re legally bound as a public entity to provide the services for

students who are eligible, and we’re also required to find out who’s

eligible, and we have all those processes in place,” Ryan said.

For Meek, though, negotiating the bureaucracy has proved to be a

tiring and expensive process.

At a September meeting, she is scheduled to negotiate with the

Regional Center over the issue of what services Thomas should receive.

But she says she worries that she won’t have enough money to pay for the

attorneys she needs to fight the case.

“What I’m trying to get is the chance to keep my son, and to prevent

him from going to an institution,” she said.