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Children's Crusaders
With special-needs kids, parents must sometimes become advocates to negotiate obstacles and find the best classroom fit.

Liz Stevens, Ft. Worth Star-Telegram, February 21, 2005

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Marilyn Perkins' son Charles was born with disabilities that have left him significantly cognitively delayed. A teenager now, "he's probably at a 3- to 4-year-old level of learning," says his mother. He did not walk until he was 7 or 8. His vocabulary extends to about 80 words.

During the first years of Charles' life, the family worked with Child Study Center in Fort Worth, and at age 3, Charles entered public school.

"For the first few years, yes, it was a beautiful transition," Perkins says. "And then we moved up to the next level, and the program just sort of faltered. It wasn't stimulating him."

The Perkinses met with teachers and principals. They moved Charles to a new school and then moved him back. For six long years, they struggled to find a program to fit his needs within the Fort Worth Independent School District.

Many parents of children with special-education needs can relate to Perkins' situation. Accessing the resources their kids are entitled to can be like navigating a forest at night without a flashlight, say parents and professionals. Try as they might to feel their way through the system, they find themselves overwhelmed by the details of testing and treatment, the intricacies of special-ed law, the minutiae of school-district politics.

The situation has bred a cottage industry of consultants, such as attorney Pete Wright and his psychotherapist wife Pam Wright. Their extensive Web site, Wrightslaw.com; books, such as From Emotions to Advocacy; and newsletters aim to provide parents with the night vision they need to find their way -- to turn them in to "effective catalysts," notes the Web site. The Wrights travel extensively with their training programs and bring a two-day seminar to Fort Worth on March 3 and 4.

Pete Wright jokingly calls his choice of profession "retaliation." When he started kindergarten in 1951 in Washington, D.C., there was no such thing as "special education." In elementary school, his teachers noticed him struggling with reading, spelling and concentration skills and labeled Wright as possibly "mentally retarded and emotionally disturbed."

What Wright was really struggling with, however, was dyslexia and attention-deficit disorder.

Luckily for him, his parents refused to believe their son was anything less than college material. They found him a private tutor, a young woman named Diana Hanbury King, who worked with Wright every day after school for two years. King would go on to become a renowned dyslexia educator, as would another of Wright's teachers, Roger Saunders.

Wright not only made it through college, graduate school and law school, but he successfully argued a pivotal special-education case before the Supreme Court in the early '90s. (There is no actual Wright's law, however; it's just the name of the Web site.) He has since been heralded as "one of the top education lawyers of his era" on the pages of The New York Times.

"When a parent first becomes aware that their child has a significant disability, it generates a lot of emotions, a lot of feelings of guilt and anger," Wright says. What typically happens after that, he explains, is parents are relieved to discover that the school can address their child's needs. But after a few years, when the student doesn't seem to be making progress, parents feel "betrayed, and then they want to fight."

They end up, Wright says, "pulling out their gun and firing wildly and it hits them in the foot and ricochets off and hits the kid."

Instead, Wright stresses, parents need to learn how to use those powerful emotions "to motivate them to really be calculating about how to get services and doors open and do it in a way that makes [schools] want to open doors."

Sometimes, though, not even that approach solves the problem.

Suzanne Metzgar has two sons with special-education needs. Sam, 14, has Asperger's Syndrome, a form of autism. Nathan, 12, is bipolar. Both were diagnosed at the age of 7. Metzgar had read two of the Wrights' books and worked closely with the schools to find classroom interventions that worked for her sons. Despite this, she watched her boys "falling further and further behind" academically. The answer, for her, was to pull both boys out of the public-school system and home-school them, which she has been doing for the past five years.

"I'm very fortunate in that my husband and I decided to make some life choices so that I could stay home and do this with the kids," she says. "But that's not a possibility for some people."

In fact, Metzgar remains a dedicated fan of the Wrights and is one of a group of special-education parents who worked to bring the Virginia-based couple to Tarrant County. Metzgar is hoping to generate enough interest to organize a local From Emotions to Advocacy, or FETA, support group. Such groups, which have formed around the country, act as an educational resource for parents who have not attended Wright seminars.

"What I like about Wrightslaw is it's not a blame game," Metzgar says. "It's teaching parents skills that nobody thought to teach us," such as how to negotiate, to create paper trails, to "present yourself in businesslike ways." These are "lifelong skills," she says, that parents will find useful in many areas of their lives.

"These kids don't come with a book," Metzgar adds.

And special-education law can be especially confounding. Take, for example, the word "best."

Of course, parents wants "the best" for their child, Pete Wright says. But insist that a school district provide "the best" possible education for your child, Wright explains, and you've just lost your case. The law does not entitle special-education students to what's "best," only what will meet that student's "unique needs" and provide "educational benefits," says Wright.

(The federal law that effectively created special education, the Education for all Handicapped Children Act of 1975, now known as the Individuals with Disabilities Education Act (IDEA), guarantees nothing more than a "free appropriate public education.")

Metzgar understands the Catch-22 that schools find themselves in. "Unfortunately, there's a huge demand with a wide range of kids and limited resources."

And the schools, too, understand the parents' predicament, says Leslie James, the Fort Worth Independent School District's assistant superintendent for student support services, including special education. About 7,800 children and teens, or 9 percent of the district's 79,000 students, qualify for special-education resources.

"It's an extremely challenging job to oversee special-education programs," James says. "Because you're dealing with the life of a child, parents do tend to be very emotional and very passionate about it. And when things are not going the way they should, sometimes [parents] do lash out at the school system. But to me that's understandable."

"Oftentimes," he adds, "when we did have an adversarial relationship with parents, it's because they truly did not understand what the law provides."

James, a former special-education teacher and past director of special education for the district, acknowledges that he is both "pleased" by school-district outsiders who work to educate parents about special education, but "it also concerns me." For one thing, misinformation, either via the Internet or directly from a consultant, is always a possibility, he says.

Secondly, "I would say there are very few, but some, advocacy groups who almost encourage an adversarial relationship with schools."

Fort Worth ISD, James notes, has its own informational vehicle for parents, a Special Education Advisory Committee made up of parent volunteers. The group meets monthly to discuss how to improve the district's programs. It brings in speakers and helps parents "get through the system," says Marilyn Perkins, who joined the group in 1993 and now chairs it. After a lot of "trial and error," Perkins finally found a successful program for her son Charles at Western Hills High School, but even she counts herself lucky.

"I hear from parents where it's not working," she says.

Most of the material in the Wrights' seminar comes straight from the recently updated edition of From Emotions to Advocacy. It covers topics such as organizing your child's file, understanding school bureaucracies and writing an effective (and affecting) letter about your child: "with visual descriptions that tell a story so well a stranger gets engrossed in [it]," Wright advises.

The Wrights' program is no vacation. Participants "get a quiz in the beginning, at the end of the first day, at the beginning of the second day and a final exam," Wright explains.

"And they are mentally exhausted by the time they leave," he adds, "but feeling very empowered."

Lessons in Advocating

Here are 10 things that parents who advocate for their special-education students should know how to do:

1. Gather information: Educate yourself about the child's disability and special-education law.

2. Learn the rules of the game: Know how decisions within a school district are made and by whom.

3. Plan and prepare: Get ready for meetings, create agendas, write out objectives.

4. Keep written records: Take down what was said and by whom, make requests in writing.

5. Ask questions, listen to answers: Know how to use "who, what, where, why, when and how" and how to request explanations.

6. Identify problems: Learn to define and describe problems; be a problem solver instead of blaming others.

7. Propose solutions: Offer your own win-win proposals.

8. Plan for the future: Have a vision of what your child's long-term future looks like.

9. Answer questions: Know the answer to "What do you (as the advocate) want?"

10. Develop a master plan: Create a broad strategy for reaching your and your child's goals.

-- Taken from Wrightslaw.com

The Wrightslaw Special Education Law and Advocacy Boot Camp - Learn more

Hosted by Community Solutions of Fort Worth and sponsored by The Arc of Dallas, The Arc of Greater Tarrant County, Education Service Center Region XI, and Mental Health Mental Retardation of Tarrant County.

When: 9 a.m. to 4 p.m. March 3; 9 a.m. to 4:30 p.m. March 4.

Where: Will Rogers Memorial Center, 3401 W. Lancaster, Fort Worth

Cost: Families, $150 per person; school professionals, $175 per person; service providers, $175 per person. Registration includes two books, Wrightslaw: IDEA 2004 and Wrightslaw: From Emotions to Advocacy, second edition; continental breakfast and lunch both days; and a reception at the end of the first day.

More information: (817) 871-7392 or www.wrightslaw.com, www.arcgtc.org.

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Revised: 02/21/06
Created: 02/21/06



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