Parenting a Student with Epilepsy; Working with the School

My oldest daughter was diagnosed with epilepsy when she was in 7th grade. For a few years we had been concerned about her school performance. It was a struggle but she was able to hold it together. Then, in 6th grade the bottom dropped out. It took awhile to get an accurate diagnosis but when we did, her life changed for the better.

However, as parents, I can say that dealing with school and epilepsy led us to many moments of frustration. However, there were good moments too. In this article, I share some of what we learned in the hopes that it helps another parent deal with school and epilepsy to better help their student.

Have a Meeting. Create a Plan.
As a parent, when you are dealing with both a school and epilepsy it's important to have an action plan. This gives you peace of mind and helps the school to know what to do.

As soon as possible after diagnosis request an official meeting at your child's school. (We called this a "504" meeting because of the Federal 504 Law. Different school systems may use different terms. Bring a letter from your doctor stating how epilepsy will impact your student's ability learn. At the meeting, discuss and come to an agreement on a plan of action.

Be flexible but firm.
Sometimes things don't go according to plan. After the plan is in place it's important to allow for some flexibility. After all, people are human. Don't sacrifice safety but do be realistic.

One of the bad moments when we dealt with the school and epilepsy happened when my daughter was on a field trip. Her side started shaking. Neither the teacher nor the principal recognized this as a seizure. They allowed her shake for an estimated hour before they called me.

The following week we revisited her school plan for epilepsy with all appropriate staff. While I was flexible on some things, I was also very firm that there needed to never be another problem following her epilepsy plan. The school heard this and there were no more plan issues while my daughter was enrolled there. My willingness to be flexible on some things helped create an atmosphere where we could work together.

Education
As a parent who is dealing with a school and with epilepsy sometimes you have to be the one in the educator's seat. At the meeting mentioned above it became apparent that the teacher and school principal had a limited knowledge of seizures. Working with the Epilepsy Foundation, my daughter's doctor office, and school nurse we were able to educate the teachers on types of epilepsy and symptoms.

Communication
To the school, a student with epilepsy is a problem. You can minimize the difficulties by maintaining good communication with your child's teacher. Email is a good way to keep in touch. Phone calls and scheduled visits work too.

When you are dealing with a health challenge like epilepsy, don't wait until there is a problem before you talk with the school. Talk to your child's teacher ahead of time. Ask if he or she is comfortable or if there is anything that you can do to help things go more smoothly.

Volunteer
As a parent, we found it helpful for our daughter who had epilepsy if we volunteered at her school. As band parents we assisted with band camp and with fundraising. We were also around as chaperones if she needed anything. (Thankfully, the "need" was usually for a few more bucks for the concession stand."

Go and drive your own car for field trips.
Having your own vehicle for a field trip or band function is important. Even if our daughter was on the bus we followed behind it in our car. This way, if she had a problem we could leave with her. It also alleviates the band director or school teacher of the liability of making a wrong call when it comes to field trips and epilepsy. Going on field trips and driving our own car seemed to give everyone peace of mind when dealing with school and epilepsy.

Source:
Personal experience.

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