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To the Educators Who Don’t ‘Get’ My Child’s Epilepsy

Dear Teacher/Principal/Counselor,

I’m writing to you today to express my thoughts about my child with uncontrolled epilepsy and hopefully give you some insight into her.

First, I would like to say a large majority of you do an amazing job. I don’t think I would cope with looking after 30 minions every day and taking work home like I know you all do. Having to deal with 30 parents makes me quake in my boots. It’s not just a job; it’s a way of life.

To the amazing teachers, you take on board my child’s needs and recognize the impact my daughter’s epilepsy has on her and us as a family, even when it may not be in your face on a daily basis. You go above and beyond in putting my child’s needs at the forefront. Thank you. Thank you. Thank you.

In regards to the small percentage of teachers/principals/counselors who just don’t get it, I would like to share with you the following:

Our child’s life is not a walk in the park, and I hope you never have to experience what she and thousands of other children go through. I thought it best to try and place you in her shoes for just a little while.

Imagine having two Valiums and then teaching a class. Just close your eyes and imagine. You feel slightly numb and slightly dazed. Would you find it easy to teach concepts, remember each child’s needs and process information coming at you thick and fast?

Our kids have this experience constantly from the epilepsy medications they take and from the seizures that can make them feel like they’ve taken a Valium… or five.

Also — it’s not just epilepsy!

Well, for some kids it is because they have no medication side effects and they’ve found a way to control their seizures. However, for my child and many others, it’s a whole lot more than seizures. The byproduct of uncontrolled epilepsy brings physical, psychological, sensory, learning and developmental issues we never knew could happen.

So, again, let’s put yourself in my child’s shoes.

You get up in the morning and as soon as you wake you’re inundated with the rush and noise of the house coming alive getting ready for school. All you want to do is sleep because after a seizure last night your brain and body are exhausted, but you’re tough so you get up and start your day.

You like things to be routine. You have so many things in your life you can’t control that what you can control something, you will. So you go and organize breakfast and break down because Mom has run out of your favorite breakfast food. You let everybody know how angry you are. You’re soothed, and a new breakfast is organized.

Now it’s time to pack your bag and get dressed, but these aren’t simple things because you find it hard to plan. You ask your mom to say one thing at a time so you can get each thing done.

 It’s time to put your clothes on. Remember, shoes have to be comfortable. No tongues, nothing moving and tight but not to tight. You’re lucky today that your mom found a pair of boots you like that don’t cause your feet to be on sensory high-alert. Now for undies — but only a certain type of undies because some cause you sensory overload and you’ll get upset again. Clothes have to be comfortable and not have any tags in them.

Now you’re in the car on the way to school. You make sure Mom doesn’t have the music up to loud; it beats through your head if it’s to loud. You have a set volume and your mom knows it. But you can’t always control the volume of your sister.

Let’s step back a minute. All this before getting to school. You’re exhausted because of a seizure the night before, but you know you have to push through.

You get to school just as the bell rings and all you can hear is children’s chatter. The same noise you can’t go near when at a supermarket or shopping center, but you have to deal with every day, so in to class you go.

Your planning and processing are slower, so thinking about organizing yourself can be tiring. Getting your bag packed away and ready for schoolwork is enough to put you over the top, but you just have to keep going.

Sitting at your desk, you’re still exhausted and in sensory overload. Now you have to read and write and listen. This seems easy enough, but learning is hard, reading is exhausting and difficult, listening takes up space in your head as you try to block out the noise around you and writing uses muscles you didn’t know you needed. You have low muscle tone so your core muscles don’t work as well. You fight to hold your posture while you write but usually end up huddled over the desk.

Sometimes the kids are quiet, other times they are loud. You have to let it wash over you and let the sensory input nestle in the back of your head because you’re a good kid who doesn’t want to lose it.

Now it’s recess. Yay, a break from work, but work doesn’t stop. Your body has to work hard to catch up to your friends. You can’t run as fast and play as much; you get tired quickly. You’re lucky you have a few friends who understand. Most of the children don’t though, so sometimes you get left out. You hate feeling left out and you sit there quietly on a bench saying, “Why me? It’s not fair”.

Recess ends and you go back to class. You have to remember what’s coming next and hope that your routine is the same, and if it isn’t, you hold it in a bit more because you’re a good kid who doesn’t want to get into trouble. Lunch is the same again, but this times it’s longer and more exhausting. Socially you’re struggling in keeping up with conversations between friends because you’re tired and about to lose it.

The day continues and you become a kettle slowly simmering away. You want to let steam off, but you hold it together.

The day is over and you get in the car. You scream at your mom and your sister and become whiny, yelling and yelling. Your mom gets you and so does your sister, but that doesn’t make it any easier for them. Your mom asks how your day was and like the steam exploding from the kettle, you let it all out.

Today, as with most days, you’ve had sensory overload, trouble processing and exhaustion. Now let’s add homework. Homework you hate. This is not because you don’t want to learn, but because you are just so very exhausted. What should take 20 minutes takes two hours. You melt down throughout it and keep on giving up. Schoolwork is always hard. You learn to count your wins and start to understand that you just have to try your best, but it’s so tiring. You have dinner and start to chill back with your family. Then a seizure starts and consumes your night and your family’s night. You fall asleep after the seizure finishes. It’s not just epilepsy; it’s your whole life consumed. Your body and mind are just getting by each day. The next morning you rise and you do it all over again.

To those who don’t get it, would you like to trade shoes with my child? I know I wouldn’t! I would if it would take it away from her, but I can’t. Therefore as a mother I’m fighting not just for you to try and understand, but I’m also fighting for her every day of her life – day in day out, and I’ve been doing it for years and years.

So please, be gentle with my girl and with me. My momma bear with big gnarly claws will come out when you don’t get it, and I can be relentless. This is because I live it each day with her and I must fight for people to understand her so she can get the best out of her education.

My beautiful girl, who from the outside looks like any other child, needs you to know that epilepsy is not all she fights against. If she has to fight against teachers or principals or counselors who don’t understand her, you’re adding to a little girl’s baggage that’s already weighed down by what most of us will never experience in a lifetime.

Thank you for reading my words about my girl, and I hope we never have to raise this issue again.

Yours sincerely,

A frustrated mom

P.S. It’s not just seizures.

Follow this journey on Ragdoll Mummas.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.