EducationNews.org

Parents become studied experts, tireless advocates
By VANESSA EVERETT
August 7, 2005
The Beaumont Enterprise

Shawna Clark, parent of a special education student in BISD, listens as Jimmy Kilpatrick talks about problems in the public school system. Kilpatrick is a special ed advocate specializing in reading, academic and behavioral problems. He is trying to help Clark get more help for her son. Dave Ryan/The Enterprise

BEAUMONT -- After a dispute with teachers about her son's education, Shawna Clark sometimes stays up at night, worrying about how the teachers will respond.

Will they use what she said to reach out to him, or will they retaliate against him?

Parents with special needs children often lie awake at night, arguing with themselves -- or each other -- about the best course of action for their children.

In the morning, they brace for the fights that come with having a child with a disability. They bury their noses in books to learn all they can about the disability.

Then, they get ready for the next trial the special education life will bring.

Clark, 42, mother of a special education student at Vincent Middle School, knows about keeping her fists up in a fight.

She recently hired a reading specialist to accompany her to a meeting with teachers and Beaumont school officials.

At the end of an exhausting, three-hour meeting, the specialist needed a cigarette, and Clark was steaming about the way the district "criminalized" her child, saying he had behavior problems.

But they got what they wanted.

Her son, who has an auditory processing disorder that makes reading difficult, would get 20 hours of intensive reading assistance through a program in Houston.

Anita Watson, director of special education for Beaumont Independent School District, said not all parents get exactly what they want for their children.

When there is only so much money, the district can't always promise parents the "Cadillac" of programs, but they must, by law, offer programs proven to work, Watson said.

With hundreds, sometimes thousands, of special-needs children for each district to serve, it can be tricky to find the perfect service for each child.

"We don't want to be adversarial, but we often have to come together to figure out what we can do," she said. Susan Cantrell, 45, a homemaker, has a daughter who has Tourette's syndrome and attends Vincent Middle School.

Parents must become experts in their child's disability, she said, and they have to be willing to stand their ground.

Cantrell had her daughter's doctors supply information on Tourette's and sent her daughter's records to an educational consultant for advice.

She studied the laws and stayed up nights, learning all she could about the problem.

She hounded the school until she got the administration to give teachers yearly training on Tourette's.

Kristina DeVillier of Nederland wanted more than just a little help and classroom modification for her child, who has dyslexia, dysgraphia and attention deficit hyperactivity disorder, or ADHD.

After two years of battling the school district, the 37-year-old nurse got her child included in the special education program.

Denise Lindsey, 31, a homemaker from Port Arthur, refuses to leave it to the school district to make sure her child, who has Asperger's syndrome, which is at the lower end of the autism spectrum, gets what he needs.

"I had to go to an outside tutor," she said. "I can't let him fall further behind."

Amie Sonnier, 30, a respiratory therapist, has a 7-year-old with autism in the Port Neches-Groves school district.

One of her parental struggles was getting enough individual attention for her child.

"They might say, 'We do this for children with this disability,'" she recalled. "Well, I'm not worried about 'children with this disability.' I'm worried about my child."

And all those struggles -- they're just the school side of it.

A disability affects every aspect of a family, including the marriage, the other children and the way time and money are spent.

It can make or break a marriage, Sonnier said.

In an article written for www.autism.org, Dr. Stephen M. Edelson of the Center for the Study of Autism in Salem, Ore., said an autistic child can make family life difficult.

Edelson noted that "divorce is quite common among families with an autistic child."

Scott Ferguson of Bridge City, who has a son with Down syndrome, got to be alone with his wife, Gay, for the first time in more than a year when they went on a date last month.

They haven't been on vacation in six years. Sonnier said non-disabled siblings often feel neglected.

"So much energy, emotion, time, money, everything, is vested on the child with the disability," she said.

Fair parenting becomes a delicate balancing act, she said.

But Ferguson was quick to add that good parents gladly accept the challenges. Their children are their lives.

"I wouldn't wish anyone to have a child with a disability," he said. "But at the same time, I'm lucky.

My son will never see what we see on a daily basis. Hate, crime, war, money -- it's not going to bother him."