I am writing to you today to express my thoughts about my child with Uncontrolled Epilepsy and hopefully give you some insight into her.
Firstly 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 the needs of my child and understand that even though her Epilepsy may not be in your face on a daily basis, you recognise the impact it places on her and us as a family. 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/counsellors 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 Valium’s 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 that is coming at you thick and fast?
Our kids have this experience constantly from the epilepsy medications that they take and from the seizures which can make them feel like they have taken a Valium or five.
I thought everyone got this next one until it was my turn to teach the new teacher each year.
It’s Not Just Epilepsy! Well for some kids it is because they are the lucky ones who have no medication side effects and it controls 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 that we never knew could happen and we have grieved them all one at a time, slowly and painfully.
So let’s put yourself in my child’s shoes.
You get up in the morning and as soon as you wake you are 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 your 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 you will, so you go and organise breakfast and break down because mum has run out of your favourite breakfast food. You let everybody know how angry you are. You’re soothed and a new breakfast is organised.
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 mum 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 mum 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 these cause you sensory overload so you get upset again. Clothe have to be comfortable and not have any tags in them.
Now you are in the car on the way to school. You make sure mum doesn’t have the music up to loud as it beats through your head if its to loud. You have a set volume and your mum 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 are 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 centre you have to deal with everyday, so in to class you go.
Your planning and processing are slower so thinking about organising yourself can be really 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 are 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 because you don’t have to work as hard.
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 is 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 as 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”.
End of recess and you go back to class. You have to remember what’s coming next and hope that your routines the same, and if it isn’t, you hold it in a bit more because your a good kid who doesn’t want to get into trouble. Lunch is the same again, but this times its longer and more exhausting. Socially you’re struggling in keeping up with conversations between friends because your 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 mum and your sister and become whingy, yelling and yelling. Your mum gets you and so does your sister, but that doesn’t make it any easier for them. Your mum asks how your day was and like the steam exploding from the kettle, you let it all out.
Today, as with most days, you have 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 2 hours. You meltdown throughout it and keep on giving up. Schoolwork is always hard and it’s never going to be easy. 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 families night. You are so tired 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.
Teachers/principals/counsellors 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 am fighting not just for you to try and understand, but I’m also fighting for her everyday of her life – day in day out and I have been doing it for years and years.
So please be gentle with my girl and with me. My mumma 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 counsellors who don’t understand her, you are adding to a little girls baggage that is 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.
Frustrated Ragdoll Mumma Zoe
P.S It’s not just seizures