Seizures can be debilitating

Advocacy group gives a voice to students with disabilitiesEditor’s note: McKenzie’s responses are her own words, typed using a computer program called Intellatalk.McKenzie Tavary is a freshman at Capital High School. She suffered her first epileptic seizure when she was only 8 months old. It lasted for three days.

Three months later, another hit that lasted for two weeks. By the time she was 6 years old, the seizures had become so frequent and debilitating the family traveled to Seattle for surgery to remove two walnut-sized pieces of McKenzie’s brain.McKenzie, now 15, has been diagnosed with autism and cognitive delay. She is speech impaired and has a severe seizure disorder.“I think her brain damage caused by the seizures set off the other disabilities,” said McKenzie’s mother, Diana Tavary. “We (she and husband, John) aren’t doctors, but that is our belief system.”

Diana is one of the driving forces of PLUK, or Parents Let’s Unite for Kids, a Helena organization that is like boot camp for parents who have children with disabilities.She has made a promise to her daughter McKenzie that she would always have a voice, and one of the ways she is helping fulfill that promise is by helping all students with disabilities through PLUK.PLUK is a private, nonprofit Montana organization, formed in 1984 by parents of children with disabilities and chronic illnesses, that offers information, support, training and assistance to aid their children at home, at school and as adults.

It serves families and individuals with disabilities of any age at no cost.n n nMcKenzie’s seizures stopped in January 2005 after a vagus nerve stimulator was implanted under her skin near her upper pectoral muscle. A wire runs from the VNS up her neck, where it connects to the vagus nerve. It sends electrical signals along the nerve to her brain which prevents the electrical bursts that cause seizures.McKenzie is now functioning more than ever. She writes. She speaks, although it is challenging.But most important, she thinks, feels and learns.

She refers to herself as “Mokn”; Diana says her daughter told her the main reason was because it was easier to write than McKenzie.McKenzie recently attended high-school listening sessions — a facilitated discussion in which students, parents, staff and community members had the opportunity to talk about the current state of high school education in Helena.The group witnessed how difficult it can be for McKenzie to communicate, and how hard it was to get to the session.She typed her comments, which were read by a paraprofessional who assists her.

She said she was happy to tell people what she thinks about school.Teachers, she said, need to know that she is not stupid and wants to be treated like other kids.“No make theenk us dum cuz reelie just diffrunt than them but God made us tu not just them peeplz ho donttt be difvrunt,” McKenzie typed.At the end the meeting, the group asked McKenzie to sit in the center of the group, and they proceeded to clap for her because she was so honest and willing to participate.McKenzie, however, did not appreciate the gesture.

“No like them clap for mokn just cuz hur diffrunt then uthur kidz,” she typed afterwards.n n nMcKenzie is one of dozens of students with disabilities in the Helena School District and thousands across the country.“The key is that these kids have the opportunity not to be cloistered into rooms by themselves,” Diana said. “They want to be treated just like any other kid out there.”She says PLUK tries to get parents in a militant place, but not in a negative way. It teaches those interested about how the disability system works and how to get legislation passed.“So when issues arise, you’ll know who the go-to person is,” she said.

Marvin Williams is an administrator in student services for the HSD, whose job is to oversea all of special education. He is a big supporter of PLUK.“I think they are an asset to schools and families if they use the right approach,” he said. “If they do, they can express the interest of the family and the school to find a workable solution.”Parents have the right to have an advocate and be advocates, he said.“It offers support, both emotionally and mentally and gives the school the perspective of the parent,” Williams said.The PLUK founders felt strongly that parents of children with disabilities need to band together to give each other support because of the healing that takes place when people who share a common problem can work together to find solutions.

PLUK employs nearly 20 part-time and full-time staffers in Helena, Billings, Kalispell, Havre, Great Falls, Missoula, Butte and Miles City, according to Sheryl Shockley, PLUK’s office manager in Billings.“We are there for the best needs of the child,” Shockley said.Tavary is a take-charge woman. She spearheaded getting 15 volunteers to work on a local PLUK associate board about six months ago.“My goal would be to establish relationships,” Tavary said. “I want to be welcomed at a table to collaborate to find solutions.

I’ve been teaching others how to negotiate, so everyone comes out a winner.”Shockley said these advisory boards serve as the voice of community for PLUK.“They help with setting up events to raise public awareness about our organization,” she added.Kathy Bean, disability coordinator for the office of community service, says many parents wonder what options are available, which is where PLUK comes in.

Bean says advocating for people with disabilities is near to her heart because she has quite a few family members with disabilities.“They (PLUK) have lots of materials in their library to utilize,” she said. “They continually try to promote inclusion.”Bean says giving families a unified voice helps them to be heard.