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Teddy's Turn to Talk

Posted Oct 01 2008 8:02pm
UPDATE! Check the bottom ... Teddy wins!!!

Teddy is a 5th grader with Asperger's, who has a hard time in school:

[His mother's] voice cracks with emotion when she talks about a day last November when Teddy came home after school bursting with excitement. It was the best day of his life, he told her.

What happened?

“No one picked on me today.”


Teddy wanted to speak about his disorder at his school during Autism Awareness month so that kids will understand him.

His principal said no.

His local newspaper said yes.

I am with them.











He's on a mission to raise awareness

By JO CIAVAGLIA
phillyBurbs.com

Teddy Willis just wants to tell classmates something about himself.

Maybe if they understood what autism is, what it's like for kids like him who have it, maybe they won't pick on him anymore. Maybe he'd make new friends. Maybe others would treat him like a regular kid.

“I'd tell them I'm one of the kids with autism and sometimes kids with autism get picked on,” Teddy explained recently in his family's Newtown Township kitchen. “It's not their fault; it's just because they have autism.”

The fifth-grader asked his mom about talking about autism at his school, Goodnoe Elementary. He thought April would be the perfect time since its autism awareness month.

What an awesome idea, Irene Willis told her son. After all, when Teddy spoke about his disability in his social skills class in February, he made a new friend. He also wrote about his autism for a school report.

“He has a lot of cool things they probably don't know,” Willis said.

Principal Eileen Dwell says the school is marking autism awareness month, but she doesn't think it would be appropriate for Teddy to share his story with regular education classmates at morning meeting, a pre-class activity where the kids practice social skills.

She is worried about it indirectly violating the privacy of other students.

“There are other children in classrooms who don't realize they are different than anyone else,” Dwell explained. “I need to look at the privacy of others.”

BALANCING ACT

An education rights lawyer says the situation illustrates the delicate balancing act schools face with helping children learn about disabilities in a positive way, while respecting student privacy rights.

Slightly more than 8 percent of Council Rock School District's 1,981 special education students last year received services for autism disorders, more than any other district in Bucks County, according to state statistics. Goodnoe has a large population of special education students with autism disorders, Dwell said.

At age 6, Teddy was diagnosed with Asperger's syndrome, a mild form of autism spectrum disorder, a neurological condition that impairs a person's ability to connect with the world, form relationships or communicate.

People with Asperger's often are described as highly intelligent, but they experience behavior or social difficulties.

As a toddler, Teddy could write his name, but he didn't talk, preferring to point “yes” or “no,” or spell answers in the air with his finger, his mom remembered. At age 3 1/2, Teddy taught himself the American Sign Language alphabet in one day, Irene said.

Teddy splits time in special and regular education classes, but school can be hard for her son, Irene Willis said. His behaviors often are misunderstood. Sometimes, he gets frustrated, loses his temper or cries.

“He is eager to learn and it is going to get squashed,” she said. “Children don't understand the difficulties between hidden disabilities and other disabilities. If a kid is having a temper tantrum, then that kid is marked on the playground.”

Her voice cracks with emotion when she talks about a day last November when Teddy came home after school bursting with excitement. It was the best day of his life, he told her.

What happened?

“No one picked on me today.”

FINDING BALANCE

During autism awareness month, Goodnoe Elementary is attempting its first specific effort at heightening awareness of “invisible differences” among staff and students, Dwell said.

Students were involved in activities such as reading picture and chapter books about kids with autism and received autism awareness ribbons. Also, teachers had additional, extensive training in teaching students with autism disorders, Dwell said.
click here

For this first year, though, Dwell felt child speakers shouldn't be part of the activities out of concern that students who attend special classes with Teddy might be singled out.

“I don't want to have kids identified by association,” Dwell said.

Student privacy rights are a sensitive area for schools, said Len Rieser, co-director of the Education Law Center in Philadelphia, an education rights advocacy group. He can understand how a family wouldn't want other people to look at their child as different.

“It's an equally important consideration,” he said.

But the Goodnoe Elementary situation presents the district with an unusual teachable moment, he added. One that school officials should find a way to take advantage of.

“What is sort of striking about this situation you're describing is, for me, it's unusual to hear of a situation where a student and his family have said they want to be part of explaining disabilities to other students,” Rieser said. “Not every school, in a way, is lucky enough to have kids willing to do this.”

If schools can find ways to let students learn from each other about disabilities, it may have a greater long-term impact than adults delivering the message, he said.

“All of us struggle with this question how to help kids learn about disabilities in positive ways,” he added. “I say it's a tricky area, but in general, we can learn a lot about autism from people with autism. There has got to be something valuable in that.”

LIKE NORMAL KIDS

During a morning meeting last week, when a teacher talked about autism, Teddy raised his hand to share his story. But he said he was taken aside and told that autism is something “personal” he should keep to himself.

Teddy doesn't understand what's wrong with talking about autism.

The disorder is just a part of who he is. Sort of like how some people have red hair and others are better at math.

Kids with autism sometimes have trouble concentrating, he explained. Sometimes, they forget a question right after it's asked. They can have trouble switching from one activity to another. Controlling his emotional reactions can be hard.

“One thing that is hard for me is kind of explaining things,” Teddy said.

Other than that, Teddy's not so different. He plays kickball and video games like Sonic the Hedgehog (“I have a Wii”), baseball, skiing and karate. He likes summer camp and amusement parks. Chocolate chip and Oreo cookies and ice cream are among his favorite foods.

“If they really knew about autism, I bet people would start treating me differently. They wouldn't be mean,” Teddy said.

Sometimes, kids call him names like Teddy Bear or Theodore, which he hates. He is always picked last for gym teams and he's never been a team captain.

“I just want people to treat me better, like one of the other normal kids. If many people knew about autism, then they might think about what the person's good at and not what the person isn't good at.”

Jo Ciavaglia can be reached at 215-949-4181 or jciavaglia@phillyBurbs.com.


UPDATE:

Student with autism is silent no more

By JO CIAVAGLIA
phillyBurbs.com

See and hear Teddy's soundslide show

To you, the daily school note may have sounded matter-of-fact, but to Irene Willis it spelled victory.

In her son Teddy's journal, his teacher wrote that in the Tuesday morning meeting, Teddy's teacher read a book to the class about Asperger's syndrome and then let Teddy talk about living with this disorder.

“It's a start. Finally, maybe things will get better for him,” Irene said. “That is what it's all about. He just needs a little help.”

Now, Teddy, 11, is planning on bringing his one-boy, autism-awareness campaign to the Council Rock school board during the public comments portion of Thursday night's meeting, Irene said Tuesday.

Initially, his principal at Goodnoe Elementary refused the fifth-grader's request to talk about his autism disorder with classmates. Principal Eileen Dwell was concerned it might violate the privacy of other students.

In a Courier Times story last Sunday, Teddy talked about his efforts to share what it's like to live with Asperger's syndrome. Following publication, autism support Web sites, listserves and blogs posted links to the story and an accompanying slide show featuring Teddy.

Asperger's is a mild form of autism, a disorder that impairs a person's ability to connect with the world, form relationships or communicate. People with Asperger's often are described as highly intelligent, but they experience behavior or social difficulties.

The Willis family and the newspaper have been flooded with e-mails supporting Teddy and criticizing Dwell's decision to not let him speak to students during a pre-class activity during April, which is autism awareness month.

The Courier Times was unsuccessful in reaching Dwell late Tuesday afternoon for comment.

“Children with autism spectrum disorders face many daily challenges, but one of the biggest is the challenge of prejudice and misinformation,” said Cathy Gallagher, a Middletown resident. “Principal Dwell may feel that she is protecting students' privacy, but she is really making a statement that "special' education students are different.”

Not only do students with disabilities know they're different, but everyone else already knows who they are, wrote Narberth resident Karin Fox, whose 6-year-old daughter is autistic.

“Do the kids with peanut allergies and diabetes have to keep silent?” Fox said. “He should be admired for his attitude — not pushed and shushed back into the closet.”

The support has been overwhelming, Irene Willis said, adding that Teddy and the family hope by sharing his story it will inspire parents to talk with their kids about people who are “different” and promote an atmosphere of tolerance.

During autism awareness month, Goodnoe Elementary is making an effort to heighten awareness of “invisible differences” among staff and students, Dwell has said. But this is the first year the school has undertaken the effort. Dwell felt student speakers shouldn't be part of the activities.

Slightly more than 8 percent of Council Rock School District's 1,981 special education students last year received services for autism disorders, more than any other district in Bucks County, according to state statistics. Goodnoe has a large population of special education students with autism disorders, Dwell said.

Teddy, who was diagnosed with Asperger's at age 6, splits time in special and regular education classes, but school can be hard for her son, Irene Willis said. His behaviors often are misunderstood. Sometimes, he gets frustrated, loses his temper or cries, which makes him a target for frequent teasing, Teddy and Irene said.

Teddy hopes his classmates will understand him a little better.

“I feel very good I shared because now they know,” he said.
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