Epilepsy & specialised learning
Peter Savage
Pat Taylor and her husband have had many conversations with their daughter Rebecca about school, homework, workload, and attendance. Mostly, these conversations took place inside the Taylor household, where Rebecca Taylor spent a significant part of her high school career. The conversations are still going on, but now they're held on the telephone, when Rebecca calls to update mom and dad on how she is coping with life at university. A few years ago, it seemed uncertain if Rebecca would even complete her high school diploma. In grade ten, seizures regularly prevented the former honours student from attending classes at Woodstock Collegiate Institute (WCI) in Woodstock, Ontario. But thanks to the unyielding advocacy efforts of her mother, a specialized home instruction program was put in place for Rebecca. "Beginning in grade eleven, our daughter was able to get the specialized academic assistance she needed, with the help of her high school, the school board, and others in the epilepsy community who offered support," Mrs. Taylor says.
Under the specialized program, Rebecca received up to five hours of home instruction per week, allowing her to catch up on time missed when seizures kept her at home. According to Mrs. Taylor, the program was very flexible. "If Rebecca was well enough to attend school in a given week, any unused home instruction hours for that week could be banked. That way, if she had a bad week, there was often a surplus of hours to draw from," Mrs. Taylor explains. Rebecca's specialized home instruction program was an improvement from the standard home instruction program she participated in during her grade ten year, when her epilepsy first made regular classroom attendance impossible. Under the standard program, unused home instruction hours cannot be banked and the home instruction ends as soon as the student returns to school.
"The standard program works well in situations where a student must stay at home to recover from, say, a broken leg," Mrs. Taylor explains. "In that situation, the condition eventually heals, the student returns to school, and it's okay that the home instruction stops," she says. But for a student with an ongoing medical condition like epilepsy, the standard program provides no incentive to return to school on days when the student feels healthy.
However, as part of Rebecca's specialized program, returning to school for a day became a continuous possibility, and a goal. "She could return to the classroom if she felt up to it, without fear of the home instruction stopping. It's no question that the special program helped her psychologically," Mrs. Taylor says.
Getting approval for specialized home instruction was certainly a long and daunting affair. As Pat explains, "It certainly wasn't a matter of walking into the school one day and walking out with a solution." Pat initiated efforts with WCI and others involved in Rebecca's treatment. "We held a meeting with the principal and the Special Education Consultant from the Thames Valley District School Board. We discussed Rebecca's situation, with the help of Epilepsy London and Rebecca's counsellor from Oxford Child and Youth," she says.
The goal of the meeting was to explore the possibility of a flexible learning program for Rebecca. The Special Education Consultant agreed that Rebecca's case was strong enough to request a special education program from the board. The request was approved by the school board's Superintendent, and Rebecca's new home instruction program began. Mrs. Taylor points out that there was, and still is, a need to raise epilepsy awareness throughout the education system. "No question we had to advocate and, at times, we had to push in certain areas," she says.
Paul McKenzie, Vice Principal at WCI when Rebecca completed her education, agrees that Mrs. Taylor's involvement was critical to Rebecca's success. "We communicated regularly and Pat kept us constantly updated on information from Rebecca's doctors," he says. Rebecca also spread awareness in her own way, choosing epilepsy as the focus of her assignments in English and Biology. After submitting her work, Rebecca received feedback from teachers saying that they had learned a lot about the disorder, and had a new appreciation for what children with epilepsy go through.
At times, even with specialized home instruction, learning remained a challenge for Rebecca. Eventually, she took advantage of WCI's resource services, which allowed her extra time and a quiet place to write exams. After seven years of hard work, Rebecca graduated from WCI. Mrs. Taylor, aware that her daughter was now determined to attend university, again took action on her daughter's behalf. She began coordinating efforts to have Rebecca formally identified as an 'exceptional student', as defined by Ontario's Ministry of Education. "Rebecca had never been formally identified and although we were able to get her the help she needed at WCI, I didn't want us to have to start all over again at university. I felt that having the proper Ministry [of Education] documentation would make it easier for Rebecca's needs to be met at university," Mrs. Taylor explains.
"I learned of another student who had been identified based on a medical condition. So, with the help of the Learning Resource Teacher at WCI, we made the identification request for Rebecca based on medical grounds," says Mrs. Taylor. An Identification Placement and Review Committee (IPRC) meeting followed in June of Rebecca's graduating year, and the request was approved.
Mrs. Taylor's next course of action was to contact universities to discuss her daughter's needs. Some universities said they would continue with Rebecca's specialized learning program; others required documentation of Rebecca's exceptionality; and, others wanted to administer their own assessment of Rebecca's needs before providing any special services. Rebecca also contacted certain universities, with a detailed list of questions about special education services. After comparing services, she enrolled at the University of Waterloo. Today, Rebecca is in her first year of the Honours Arts program. Although she still faces challenges, she does find support in the wide range of services offered by her university, including note taking, private examination rooms, tutoring and counselling. Mrs. Taylor says parents and students should not to be intimidated by the vocabulary that surrounds special education programs at some universities. Rather, she encourages people to evaluate each school based on the services they provide. "Some universities will say 'disability', others will say 'special needs'; it doesn't matter. The bottom line is that the support is there."
Pat and Rebecca Taylor's story is an example of how parents play a vital role in creating academic opportunities for children with epilepsy. Paul McKenzie agrees, "WCI and the school board played a role in supporting Rebecca, but it was the efforts of Mrs. Taylor who made her daughter's success possible."
Pat Taylor encourages all parents to advocate for their children's rights to special education. It can be a very demanding task, but, as Mrs. Taylor puts it, "If we can help our daughters and sons to be successful as children, then there's a better chance that they will be successful as adults."
