"Exceptional" studentsPeter Savage
If you're the parent of a child with epilepsy, you may have experienced some frustration in trying to help your son or daughter succeed in school.
One solution available, which many parents have pursued, is having their child identified as an "exceptional student". With significant involvement, parents can ensure that school administrators, faculty, and staff have an understanding of epilepsy, and practice effective ways to encourage students. While this approach can be successful on an individual level, the need to increase epilepsy awareness on a macro level in Ontario schools remains.
Within the school system, epilepsy does not have as much prominence as other learning-related issues like Attention Deficit Hyperactive Disorder (ADHD). As a result, many board officials, administrators, teachers, and support staff personnel haven't had opportunities to learn and practice teaching strategies that help the student with epilepsy succeed. Some advocates of children with epilepsy suggest this lack of awareness stifles the opportunity to maximize the effectiveness of a special education program.
In order for a child to qualify for special education, he or she must be "identified" as being an "exceptional student." A student is deemed exceptional if it is determined by an Identification Placement and Review Committee (IPRC) that his or her disorder, impairment, or disability falls into one of several categories, established by the Ministry of Education.
Mary Secco, Executive Director of Epilepsy Support Centre in London, Ontario, suggests awareness promotion should begin at the IPRC stage. "On the IPRC's Statement of Decision document, there are boxes to tick for certain specific exceptionalities, such as autism or speech impairment. "Because these are explicitly mentioned, there is an awareness of these exceptionalities within the schools," she states. "If epilepsy was also specifically designated as an exceptionality, it would be a major step forward in communicating awareness of the disorder throughout the school system from the inside out."
Sara Moir, Developmental Special Education teacher with the Thames Valley District School Board in London, agrees that epilepsy "is not widely understood within the school system to the degree that a learning disorder like ADHD is. Teachers, staff, and administrators have simply not had as much exposure to epilepsy," she says.
Secco points out how this lack of awareness could prevent a child from receiving the specific support he or she needs. "A child with epilepsy could have a seizure in class and appear as though he or she is staring off into space or not paying attention," she says. "The possibility exists, then, that this could be misinterpreted as a behavioural issue. Poor academic performance can result, but this isn't necessarily the result of a behavioural issue, or an attention-span issue, or a problem with the child's desire to learn."
Challenges in promoting the understanding of epilepsy, however, are not confined to the school system. Opinions differ on how to categorize the condition, even among those who understand epilepsy intimately.
Epilepsy Ontario defines epilepsy as, "a neurological disorder – a physical condition – which causes sudden bursts of electrical energy in the brain. Epilepsy is not a disease; not a psychological disorder; not contagious." However, many well-intentioned individuals question whether or not epilepsy is a disease. Webster's Medical Dictionary defines disease as:
an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions and is a response to environmental factors, to specific infective agents, to inherent defects of the organism, or to combinations of these factors.
To add more debate, epilepsy is specifically mentioned as a "disability" in the Ontario Human Rights Code, under Section 10 (1)(a):
any degree of physical disability, infirmity, malformation or disfigurement that is caused by bodily injury, birth defect or illness and, without limiting the generality of the foregoing, includes diabetes mellitus, epilepsy, a brain injury, any degree of paralysis, amputation, lack of physical co-ordination, blindness or visual impediment, deafness or hearing impediment, muteness or speech impediment, or physical reliance on a guide dog or other animal or on a wheelchair or other remedial appliance or device.
Epilepsy could also be classified as a handicap, according the World Health Organization's definition of handicap:
a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual.
Still others may argue that epilepsy qualifies as an impairment. The World Health Organization defines impairment as "any loss or abnormality of psychological, physiological or anatomical structure or function."
Add to these definitions the fact that epilepsy affects different people in different ways, and the condition becomes even more difficult to narrowly define. With so many possible descriptions, the sharing of personal experiences is vital towards raising awareness and understanding of epilepsy.
In the crusade to promote epilepsy awareness in Ontario schools, the efforts of individuals are as important as ever. Secco points out that parents can help by continuing to be actively involved in their child's special education. "A student with epilepsy can be identified as exceptional, and can get special education, but it's up to parents and advocates of those with epilepsy to provide input to the schools," she says. "That way, special education programs can be designed to specifically support the student with epilepsy in our schools."
Part II
Peter Savage is a freelance writer based in London, Ontario.
