Whiting-MacKinnon,
C., & Roberts, J. (Fall 2012). The School Experiences of Children with
Epilepsy: A Phenomenological Study. Physical
Disabilities: Education and Related Services, 31(2), 18-34.
This article examine students with
epilepsy in an inclusion classroom. The
authors define the different types of seizures and the factors that come into
play: academic factors, social factors, behavioral/emotional factors, and
physical factors. Further, they share
their research examining how these students with epilepsy experience
school. Specifically the study looks at
the relationship between epilepsy and the students’ quality of life, their
feeling of normality, and their interpersonal relationships. The students also
offer the researchers ideas on ways to make their school experience
better. For example, the children would
appreciate epilepsy discussed in a school assembly. They believe that a better understanding from
their peers and teachers alike, would make their school day a positive event.
I chose this article because I have
recently been diagnosed with epilepsy. Six months later, I am still trying to
find the correct combination of medication to make the seizures completely
stop. I have been on an emotional rollercoaster
and I am 44 years old. I honestly can’t
imagine how that would feel as a child and deal with that during the school
day. Academics obviously must be
addressed and I know just how physically exhausting some of the medications can
be. The students in this study said that
the educational services such as extra time and tutoring made a positive
difference in their grades. Equally
difficult, for the students, ages 7-12, were the social issues. They were teased, some students were afraid
of them, and even teachers did not know how to handle some situations.
This article hit home with me and
made some very valid points.
Unfortunately, the study did not include enough children for it to hold
true validity. The students interviewed
were limited to 6 participants. It is my hope that this type of study will be
broaden. I appreciate the actual subjects’
opinions and ideas being taken into account.
Julie Kate, of course it is challenging to deal with any type of disability or illness. I'm so sorry for your recent diagnoses. My prayers will be with you in believing God for your healing. You talked about the students in the study offering the researchers ideas on ways to make their school experience better. This would be great to take into consideration while educating teachers and staff members to deal effectively with academic and social factors. I agree with you that the case study should have been broadened and more participants should have been involved. I would have liked to read more. Thanks for sharing.
ReplyDeleteKate, I was so excited to read your blog for the week. I knew you were thinking about writing about epilepsy. We have a close friend who needed to pull their daughter from the private school and place her in public high school because of her epilepsy. It really started to become a problem in middle school and the multiple seizures at school were traumatizing to her socially, and to her classmates. She really needed a school nurse and special education team to meet her specific needs.
ReplyDeleteI was also sharing with you last week about a boy that I tutored. He wasn't able to attend school due to daily grand mal seizures. His mother had left the family because she couldn't deal with the severity of the condition and Lance was severely behind in his academics. The seizures would significantly take away from his memory/retention of the materials covered in class. It was sad.
Thanks for sharing your personal experiences, too. I hope that they can get things under control for you. You are going to be a great asset to student in similar situations.
Kate,
ReplyDeleteI wrote about my epilepsy too, and how I don't think I could handle everything about it if I was a kid. I agree with the students in your article that seizures should be discussed in schools, because anyone can have a seizure, not just people with epilepsy. I think there is an enormous stigma when it comes to epilepsy, and I hope that can change soon.
Thanks for sharing your personal story in connection with the article. It just makes sense that talking about an issue would bring knowledge and then maybe take away some of the fear of the unknown. I was actually babysitting the other day and the fourth grader I watch came home and had a letter for students to give to their parents. It informed them of a seizure a student had in class during the school day and to be ready to answer questions their student may have.
ReplyDeleteA question I have is, what grade level would it be good for to have an information session about these things? Because the air of secrecy and mystery is there with the kids when they bring the letter home and kind of talk about it in hushed tones. Even the manner in which the classroom teacher handled the situation (I heard the comments that the fourth grader told me her teacher said) seemed to be somewhat dramatic and snickering-inspiring. Maybe it's the teachers who need the information sessions about how to treat students who have an epilepsy diagnosis, as well as how to respond to students when they experience a seizure.
Kate,
ReplyDeleteI had a student in my classroom last year with a form of epilepsy called dravet syndrome. I was very scared as a teacher because I never knew what to expect from him on a day to day basis. There were times that he would come in to school in the morning and sleep until lunch because he had a seizure on the bus or because they were adjusting the doses of his medication. As they year when on he missed more and more school due to his seizures.
My student had a full time nurse that traveled to and from school with him as well as was in our classroom all day. I feel thankful that we had her because I know that I probably would not have been given much training on what to do otherwise.
I have sat in on all school seizure trainings and all we are told is to call the school nurse and start noting the time.
Not knowing when a seizure may come on must be a very scary reality for students. I second Fran's question about what grade level would it be appropriate to have an information session? I think that this is something that other students need to learn about in order to prevent children from being teased and picked on.
Thank you for sharing your personal connections with this article. Even though this has been a difficult journey for you, you will have a new level of empathy and understanding for families and students as they work to find the most appropriate treatment plan. I remember growing up there was a girl who was diagnosed with epilepsy as a teenager. I remember how scary it was for her and her family...never knowing what to expect each day. I am confident you will be able to use your experiences to help many.
ReplyDelete