My name is Linda Kelley and I live in Pocasset, Massachusetts. I am a 75 year old person with epilepsy who has had seizures throughout my life as a result of contracting spinal meningitis when I was 3 months old. I write to you now to urge you to support the Seizure Safe Schools Act 4641.
My story began in 1950 when I was hospitalized and was read the ‘last rites’ due to a fever so high that doctors were convinced I would not survive. I am not sure why, but I did survive and it was believed that I was normal in every way. But I wasn’t. The high temperature caused by spinal meningitis ‘burned’ my brain and left scars. The resulted in my being a person with epilepsy.
As a child, school was difficult. I had to work very hard to learn and remember. When I could not, I believed I was just not working hard enough or paying attention to my teachers. Then, when I was 19, I began to have partial complex seizures. These seizures affected cognition, speech, listening, and speaking. When I read, I knew there were words in a sentence, but I had no idea what they meant. I could see and hear people speak, but I could not understand what they were saying. When I tried to say something to them, al they heard was gibberish.
My greatest support in all of this came from my teachers. They knew something was wrong and tried to help in so many ways. But they couldn’t understand why I was able to listen and participate in class most of the time and yet, there were many times when I was completely incoherent. Neither did they know that my ‘behavior’ could be related to the epilepsy, not what was then defined as a child’s poor upbringing. Because classes were very large, and there were no such things as a teacher’s assistant or an in-class caregiver for a student, teachers were unable to give all of their students all that they needed. I was certainly not the only student in the class who had problems.
Nevertheless, I continued to work hard in education. I earned two college degrees in Spanish language and literature, and two in education. After earning a doctorate from Harvard in educational administration, planning and social policy, I became a public school principal. In that role, I saw what teachers and students with epilepsy had to endure and I saw how hard teachers worked to include students with epilepsy in heterogeneous classes. I saw that all students with epilepsy can achieve in school and reach their goals in life.
To accomplish this, teachers, administrators, and all other staff members must be trained to recognize when seizures are taking place and respond proactively in order to protect students who have epilepsy. They must also be trained to ‘take appropriate steps’ to apply seizure first aid. And they must have a person who works with all schools in their district to train teachers and manage action plans of students with epilepsy.
I ask you now to please pass the Seizure Safe Schools Act into law so we can create an environment that is safe for all students with a seizure disorder.