Renee Whaley, 66, blazed a trail for disabled students

SPRING HILL — Renee Whaley, an advocate for children with special needs, spoke loudly and also carried a big stick. Grateful parents who suspected they had rights, but didn't know what they were or how to use them, regard her as a trailblazer.

A self-taught scholar of education law, Mrs. Whaley stood beside parents as they battled schools for better services. She helped them hold it together when they wanted to cry. She praised their courage for taking on administrators.

Mrs. Whaley, a hefty woman who knocked down locked doors on behalf of thousands of children with disabilities, died Monday, of respiratory failure. She was 66.

"If her size didn't bully you, her words could eviscerate you," said Karen Clay, who won a lengthy tug-of-war with Plant High School in the late 1990s.

She credits Mrs. Whaley's advocacy for finally getting a special computer for her son, who has a neuro-muscular disease.

Mrs. Whaley, who directed the federally funded Family Networks on Disabilities for at least 15 years, also advised Nikole and Keith Whitehead as they sued the Hillsborough County School District over the handling of their son, who has Down syndrome.

The Whiteheads had asked for a weekly hour of speech therapy for their son, Andrew. The district refused. After two years of trying, the parents sued.

"Because we were in many ways cutting new ground as parents, Renee had the ability to affirm for us and validate what we were doing," said Nikole Whitehead, 47. A 1998 jury sided with the Whiteheads on part of their claim, and awarded the couple $600,000.

The Family Networks on Disabilities was created by the Individuals with Disabilities Education Act, which mandates "free and appropriate public education" for children with disabilities.

Mrs. Whaley started working for the organization in West Palm Beach around 1987, and stayed with it after moving to Spring Hill in 1994.

She urged parents to learn the law and taught them how to request school records. She was like a tough coach, telling parents they had to act like professionals if they wanted to impress professionals at the table.

"Renee told parents to be nice to teachers because you are their advocate, too," said Clay, 56. "Be gracious and kind. Bring doughnuts. Anything to set the tone."

Sometimes doughnuts didn't do the trick. Administrators said that money for more teacher time or assisted technology wasn't in the budget.

"She'd say, 'Okay, you give me a letter telling me that you absolutely don't have the money to educate this child appropriately, and I will not harass you anymore,' " said her husband, David Whaley. "They would never give her that letter."

Born as Renna Mathiesen, she grew up in Youngstown, Ohio, and graduated from Youngstown State University. She worked for a tourist magazine in Atlanta, but found her calling unexpectedly.

In 1978, her 2-year-old son, David, was diagnosed with autism. Mrs. Whaley fought to keep him in mainstream classes. Her theory was that kids listen to other kids more than to adults.

She got active in the Autism Society of America. She joined Family Networks on Disabilities and was soon giving presentations on how to gain services, especially from schools.

And she was effective. The judgment in federal court against the Hillsborough school district didn't help the Whiteheads financially — attorneys took the $600,000 and billed them another $400,000. But it discouraged schools from retaliating against parents who exercise their right to participate in a child's education.

Mike Phillips, Clay's son, graduated from Plant High in 1999 with a 5.6 grade point average and now consults for a software company.

The younger David Whaley died at 20 in 1996, the result of a burst appendix. He had a high pain threshold and did not show discomfort until a week after the rupture, his father said.

Mrs. Whaley retired in 2004, but was on the phone five or six hours a day anyway.

Tom Nurse of Clearwater is one of the parents she helped. His daughter, Shelby, was a high school cheerleader now enrolled at St. Petersburg College.

Nurse, 53, credits Mrs. Whaley for helping him navigate the legal and educational systems. "It's like taking a walk through a jungle," he said, "and there's somebody in front of you hacking down the path."

Andrew Meacham can be reached at (727) 892-2248.