Teachers Are Not Aware That She Has Epilepsy

In addition to freelance writing, I work part-time as a substitute teacher in my kids' school. I have a background in education, but I chose not to teach full-time, in part because of my child with epilepsy. I need to be available to her in an emergency. Substitute teaching allows me to stay involved in education and have a flexible schedule for my kids. My son is in kindergarten, and my daughter is in first grade.

Teachers don't always like it when parents substitute teach, and I can understand that. Any person with any bachelor's degree can obtain a subbing license, and parents don't always make the best subs. My background in education puts me at an advantage. I know how to teach.  I've developed a reputation for being a qualified sub in the building, and I think they like me.

Telling People She Has Epilepsy

I was recently subbing in kindergarten for my son's class. One other kindergarten teacher and I were discussing our kids while at recess duty. My daughter went through kindergarten last year, and this teacher was shocked to find out that my daughter has epilepsy.  I was surprised by this for a couple of reasons.

First, the kindergarten teachers work very closely together. The teachers create lesson plans together and get to know the entire kindergarten team, not just their own classes. Last year, my daughter's teacher knew that she has epilepsy, but it turned out the rest of the kindergarten team wasn't aware. I found myself concerned that if my child had a seizure in the presence of one of these other teachers, that they would not be able to handle seizure protocol.

Absence Seizures Don't Look Like Seizures

My other concern involves my daughter's behavior in school. Absence seizures are often misdiagnosed as ADHD. Frequent staring spells can look like absent-mindedness or not paying attention. Should another teacher see my daughter staring off in the hallways, would she be disciplined rather than helped?

Should I Change my Approach With School Staff?

My interactions with this teacher made me reconsider my entire approach when it comes to my daughter's epilepsy and school. The nurse reassures me every year that the necessary adults with be made aware of her medical needs and seizure protocol. Perhaps that doesn't include the entire team of teachers in her grade.

It would comfort me to know that all of the teachers in her grade were aware of her medical needs. They need to know for field trips, recess duty, and even for times when the classes switch around to other classrooms.

I need to develop a plan to provide information to all of the teachers she interacts with daily, and even those she doesn't.

If all goes as planned, next year we will be trying to wean her off of her seizure medication to see if her seizures return. It will be especially crucial for teachers to be able to let us know if they see anything that resembles an absence seizure.

So, it looks like I will be working on a plan to provide information and materials to the second-grade team. Luckily for me, my friend Vikki has written a book with tons of resources for parents when dealing with schools and epilepsy. 

What kinds of conversations have you had with school staff regarding your child's epilepsy? 

-Abby, Guest Blogger

Coping With An Epilepsy Diagnosis

Although we suspected it for a while, receiving the official epilepsy diagnoses for our 6-year-old daughter was a shock. The moment the doctor confirms the diagnosis, your mind begins a marathon going through every possible scenario, outcome, and question you could have. In those first few moments, it's challenging to consider the first and next steps when you're already thinking about the worst-case scenario for your child. This is especially true if you're an anxious worrier as I am.

My husband has a strong family history of epilepsy. His mother, his sister on one side, and his aunt, on the other side, all have forms of epilepsy. So when our daughter spent four years suffering from complex febrile seizures, we suspected epilepsy was involved. It took four years for a pediatric neurologist to take steps to perform an EEG finally, despite none of her seizures occurring outside of a fever. For four years, we held on to hope that perhaps they were just febrile seizures, knowing she had all three of the significant risk factors for epilepsy.

As prepared as we were, finding out definitively that she had epilepsy removed any of that hope. With the official diagnosis came medications, side effects, seizure action plans, and rules about what she could and could not do. It was overwhelming. As parents, we had to cope all while helping our daughter to understand and to cope with something going on in her brain.

Getting a Therapist Involved

We took our daughter to see a therapist. We needed help teaching her to cope with the possibility of having epilepsy for the rest of her life. We still don't know with certainty if she will be able to outgrow her childhood absence epilepsy. While it's possible, there is no certainty.

The therapist sat our child down in front of a whiteboard and drew pictures of the brain. She explained neurochemicals to a 6-year-old in a way that we would not have been able to. She brought out a plastic model of a brain and allowed our daughter to take it apart and put it back together again. This therapist explained to our daughter that all people have differences, and despite those differences, medical or otherwise, everyone is unique and special. Epilepsy was part of what makes our daughter unique and special. In several therapy sessions, our daughter was empowered by what made her unique, and we had tools to use when asked questions about her "apple-epsy."

If you're struggling like we were with the diagnosis for you or your child, a counselor or therapist is a resource that you can tap in to and give yourself and your child the tools in their toolbox to cope with a frightening and confusing diagnosis.

Sometimes as parents, we don't have all the answers, and we are not able to best explain things to our children when we are scared and confused ourselves. Therapy has been an invaluable tool for our entire family, and it could be for yours too.

-Abby, Guest Blogger