Sunday, April 22, 2007

Senate vs. Epilepsy

When Brenden Chappell had problems in the second grade in a Kansas school because of epilepsy, his teacher’s answer was to put his desk at the back of the room and make him face the wall.

Brenden suffered a great deal because of his teacher’s ignorance that year, the same year he was diagnosed with a type of epilepsy that causes absentee seizures.

This type of seizure means Brenden “blanks out” and stares into space for a few seconds. He also has partial seizures that cause him to do odd repetitive behaviors such as sniff loudly or pull at his hair. He doesn’t remember these lapses, which are caused by brief electrical disturbances in the brain.

During the second grade, Brenden was punished for his odd behaviors, was sent to the principal’s office repeatedly and was abused physically and verbally by other students, which his teacher did nothing to stop, said his mother, Cecilia Curry.

Curry has learned a lot about her son’s disability and is encouraging his teachers at Paonia Elementary to learn more, so her son can get the education he needs and deserves, she said.
Brenden, now 11 years old, is also fighting back, and at the invitation of the Epilepsy Foundation, he will represent Colorado at a Kids Speak Up for Epilepsy program April 22-25 in Washington, D.C.

Brenden will talk to about 25 senators at a time, since larger crowds raise his stress levels, and he will meet individually with Colorado Sens. Wayne Allard and Ken Salazar and Colorado 3rd Congressional District Rep. John Salazar.

His message is simple: Provide more funding for schools to deal with disabilities such as epilepsy.

“I’m just like any other kid, and there are 300,000 kids with epilepsy in the U.S.,” he said. “I just want them to give more money to schools for epilepsy because when I was first diagnosed, they didn’t have anything to deal with it.”

That initial experience with a school that didn’t want to deal with his problem damaged Brenden’s self-esteem, said his mother, and eventually led to his being expelled.

“Schools should be regulated on how they are treating kids with epilepsy so they can get educated,” Curry said. “They need it, and Brenden is very intelligent.”

Curry said her family has been in Paonia for about a year, and Paonia Elementary only started to develop a special program for Brenden after learning he was going to speak to legislators at the Capitol. As a result, he’s doing better in school and is more sure of himself, she said.

Medication cannot control Brenden’s seizures, but he desperately needs the understanding by his teachers on how to deal with his disability, his mother said.

For example, when he takes a test, he needs to be put in a separate room, because taking it in front of his classmates raises his stress level, which brings on his seizures. To demonstrate, Curry showed a test where Brenden had scored a 56 when given the test in the classroom, but when he took the same test in a separate room, he scored 85.

“The misconception is that he was being defiant, but his stress level can cause seizures,” Curry said.

Paonia Elementary is now trying to meet Brenden’s needs, which his mother said is his right under Section 504 of the Rehabilitation Act of 1973, which requires school districts to make programs and activities usable by all students with disabilities.

According to the Epilepsy Foundation, Congress also needs to recognize the importance of the Americans with Disabilities Act passed in the early 1990s, because it has been watered down in recent years, especially for people with epilepsy, according to a foundation report.

“Several recent Supreme Court rulings have made it difficult, if not impossible, for people with epilepsy to bring forward discrimination cases as the courts cannot determine if the person is disabled enough due to medications they take,” the report states. “The Epilepsy Foundation supports an ADA Restoration Act to fix problems with the definition of disability.”

Education is particularly important to epileptics, Curry said, because they just can’t make it as construction workers.

Brenden said he wants to be a lawyer when he grows up, but not because he’s witnessed his mother’s struggle with his schools.

“I’ve had a lot of practice arguing with my parents,” he said. “But I still get grounded.”


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