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Emily’s Perspective: A New School Year with Epilepsy

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photo(5)Epilepsy affects the whole family in so many different ways. The effects of Epilepsy & seizures on the life of the family and child are extremely variable. For example, children who experience mild, infrequent seizures that are easily controlled by medication will likely lead lives with few restrictions on their social and physical functioning. At the same time, children and their families may be frightened by the diagnosis of Epilepsy and continue to feel worried and uncertain about the possibility of another seizure.

Even when my seizures were mild, my family and myself lived with the ‘What if’s’ of Epilepsy. What if I fall behind in school? What if I lose all my confidence and never want to go anywhere alone? What if I can never be independent? All these questions are common for parents and patients of Epilepsy, and in this month’s column I’d like to advise parents on what may help their child in this new school year.

Preparing for School: Teachers & Students

Dealing with the fear and embarrassment of having seizures in front of friends and teachers can be difficult for a child to handle. In 2006, when my seizures began, I frequently got laughed at; it was the most humiliating thing I have ever experienced. Nobody knew what to do or how to react, so people laughed and stared at me as I stared blankly. From the experience of seeing how well my parents have coped with my Epilepsy my first tip is to prepare your child and their school for how to handle seizures when they strike.

To do this, make sure that your child understands seizures and Epilepsy. Next, talk to your child’s school teacher(s) and the head of the school (Principal) to inform them of your child’s neurological condition. It is also a good idea to give them a list of what could be a possible trigger for the seizures. Ask the teacher if she/he will explain what epilepsy is to the classmates. This way they will understand what is happening when a seizure occurs and it’ll be less daunting for everyone.

Your child’s teachers also need to understand how epilepsy and seizure medications can affect your child’s ability to learn and perform in school. When I was first put onto my anti epileptic drug (Ethosuximide) I was tired a lot, I was irritable, and I felt sick most days. Having my teachers aware of what I was going through was one less thing for my Mum to worry about because she knew I was being taken care of at school. Children with Epilepsy are just as intelligent and capable as other children although it’s not uncommon for children with epilepsy to struggle in school.

It is important to make sure everyone is aware of what your child is going through because children who have epilepsy are likely to miss a lot of school because of doctor’s appointments, tests, and sick days. These missed days may also affect performance but it shouldn’t be put down to ‘laziness’. If this is happening, you might want to consider getting a tutor so your child can stay on top of schoolwork, even if it’s just once every few weeks to recap.

Sharing Experiences

My school life living with Epilepsy (2006-2011) was one big roller coaster ride, but along the way I learned a lot that I can pass onto others to help them along the way. As a child you can feel isolated and unhappy when you’re struggling with seizures, so one thing I always enjoyed doing was educating my classmates (and sometimes my teachers!) about my Epilepsy. Epilepsy can take a toll on children, but it doesn’t have to significantly affect your child’s experience at school. If you and your child can help with educating classmates, parents and teachers, it will go a long way towards minimizing the child’s fear of having seizures at school.

Ask yourself, is your school aware of epilepsy? If not, here are a few pointers you could pass on to them.

  • Epilepsy is a common neurological condition.
  • There are different types of epilepsy and many different types of seizures, they do not all look the same
  • 80% of children with epilepsy attend mainstream schools and colleges, it is possible to live a normal life

Does your child’s school offer a show and tell day? When I was in school, once a week we took it in turns to stand at the front of the class to tell a story or show our latest favourite toy. This is the perfect opportunity to let your teachers or your child raise awareness of the challenges of living with epilepsy. By doing this you can promote open and positive attitudes and behaviour towards epilepsy & reduce stigma and misunderstanding.

Quick Tips

If your child struggles to concentrate in class, whether it’s because of medications, treatment or the after affect of a seizure, try asking for some extra time in class to make notes on the key points that they have learned in that lesson; even small things will help to trigger your child’s memory when looking back at the notes. This can be made fun! Try getting a pretty notebook, some colours, and stickers. It is also a good idea to make learning outside of school ‘fun’. Try sitting down for 30 minutes at home to go through what your child learned that day, try making some flash cards for them to look back at when they feel confused or forgetful. I loved flashcards in school; I hung them around my room so I could read them all the time.

What struggles have you or your child faced when a new school year begins?  How did you overcome them?  Let me know in the comments!

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Contributing Writer

Emily's Perspective is a snapshot of what life is like for a young woman living with Epilepsy and seizures. I was diagnosed with Epilepsy during my last year of primary school in 2006. It has been a challenge but it's made me who I am. Based in UK.

  1. Leila
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    My mom always wrote my teachers a letter and we would go drop it off before school started. That way, the teachers knew me and my personality a little before they had to learn many students all at once. Once I got a little older, I made my own informational pamphlet to pass out to teachers. Knowing that teachers had the information available and knew me a little bit definitely made me more comfortable in their classroom!