Children's crusaders

[Guest guest]

http://www.dfw.com/mld/dfw/13923499.htm

Posted on Tue, Feb. 21, 2006

Children's crusaders

By LIZ STEVENSSTAR-TELEGRAM STAFF WRITER

Marilyn Perkins' son 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 ' life, the family worked with

Child Study Center in Fort Worth, and at age 3, 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

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 and his psychotherapist wife Pam . Their

extensive Web site, slaw.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 s travel extensively with

their training programs and bring a two-day seminar to Fort Worth on

March 3 and 4.

Pete 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 as possibly " mentally

retarded and emotionally disturbed. "

What 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 Hanbury King, who worked with every

day after school for two years. King would go on to become a

renowned dyslexia educator, as would another of 's teachers,

Saunders.

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

'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, " 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, says, " pulling out their gun and firing wildly

and it hits them in the foot and ricochets off and hits the kid. "

Instead, 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. , 12, is bipolar.

Both were diagnosed at the age of 7. Metzgar had read two of the

s' 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 s 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 seminars.

" What I like about slaw 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

says. But insist that a school district provide " the best " possible

education for your child, 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 .

(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

, 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, " 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. "

, 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, 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 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 s' 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], " advises.

The s' 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, " 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 slaw.com

THE WRIGHTSLAW SPECIAL EDUCATION LAW AND ADVOCACY BOOT CAMP

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 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, slaw: IDEA 2004 and slaw: 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.

---------------------------------------------------------------------

-----------