Shhhhhh! Please don’t tell anyone, but I have a secret that I really don’t like to talk about. It’s best we keep it between you and me. You’ll never guess, so I should probably just tell. My son has epilepsy.
Sadly in 2015, there’s still a huge stigma attached to epilepsy in our diverse community. In our family setting epilepsy is no big deal, but when we leave the “comfort zone” of our home, family and friends, epilepsy is something that we intentionally try to keep a secret. You know, epilepsy wasn’t always something that we tried to cover up, but there came a time when we said enough;
- Enough to people physically taking a step back when you tell them your child has epilepsy,
- Enough to parents not wanting play dates with the “epilepsy kid”,
- Enough to other kids teasing our son,
- Enough of people not understanding that they’re not going to catch epilepsy,
- Enough to our child being made to feel like he was an alien from the planet Zorg.
There’s no excuse for their hurtful actions and words whether it is deliberate or not. I really struggle to fathom that there is still a lack of understanding about epilepsy today. I know I am not helping the ‘epilepsy cause’ by keeping my son’s medical condition in the shadows. However, he is my little boy and I want to protect him. Am I then partly to blame for the stigma and shame that we face?
I don’t know. Should this even be my responsibility? (Hopefully Ragdoll Mummas will do a bit to educate the masses)
Basic human rationale would suggest that no one, especially a child, should be treated differently or badly because of a medical condition beyond their control. Sadly it has happened and still happens today. We’ve never let our son or family play the “victim”, but it’s hard sometimes not to feel like we’ve be hammered to a Holy cross.
The first time I actually noticed the blatant discrimination against my son, it took my breath away. I remember it as clearly as the day of 9-11. Both events changed how I see the world – a little more hopelessness and despair for the human race.
You might think I am a over dramatising, but let me share my story before you judge. We were in the process of moving to Perth, mainly to be closer to medical care for our son. We were house hunting and were looking at schools for our three kids.
I rang one school, but they were full and suggested I try another. I rang the second school and they were warm and welcoming. They had emailed me the application forms and it sounded like a fantastic school for our kids. I hadn’t thought to mention my son’s epilepsy nor the fact he required a full-time educational assistant to help him cope at school. He’s just our son who we love unconditionally. I hadn’t deliberately hid this information, but once disclosed our dreams and hopes were dashed. The school offered positions to our two older sons, but not to our youngest. I was a flaming ball of fury on the inside, but outwardly remained polite whilst asking why? We were told the school simply didn’t have the resources to cope.
What happened to the promise of no child being left behind?
Picking myself up and kindly declining the offer for my two older sons to enrol at the school, we continued to search for a suitable school. I was open and honest from the get-go, the next school reluctantly agreed to take our children as we fell in the local catchment area, but suggested somewhere else may be more suited for our son. We found another school that finally welcomed our three sons with open arms and made the accommodations to make it work for our youngest.
This year we have enrolled our youngest son at another primary school to enhance his academic abilities. We thought long and hard and debated often whether we disclose our son has epilepsy. He hasn’t had a seizure at school for almost two years, his behaviour is good and academically he’s out-performing most kids his age.
Our son is just like every other little boy his age. He can be oh so cuddly and loveable, then the next minute an absolute Mr Crankypants. He loves minecraft, minecraft and minecraft YouTube videos. For us and him epilepsy is no biggy, for the most part it’s controlled. Why then should epilepsy be able to define our son to those who don’t know him?
I asked friends, family and even medical professionals for their opinions whether to keep his epilepsy a secret. Interestingly, those on the epilepsy coal-face suggested that I remain gracefully quiet when filling out the school medical forms. Friends and family who didn’t deal with ugly epilepsy everyday urged me to tell!
Our son is prescribed an emergency recovery medication in the event he has a seizure lasting longer than three minutes. With this in mind, and even though he hasn’t required the recovery drug for a couple of years, I had to be honest and I told the school.
To my relief and restoring a little faith back in my world, the school gladly accepted our son to their community. Even more wonderful was the first time I met his teacher and told her my son had epilepsy, she didn’t freak out and step back. Instead she began to tell me how they recognise Purple Day, a day to raise awareness about epilepsy, at the school each year. Wow, wow, wow!!!
Just like at home, his school is aware he has epilepsy, they’re prepared in case he has a seizure, but it’s no big deal. There he is not the boy with epilepsy, but just a kid treated like all the others. Epilepsy is now just a tiny, inconvenient part of his life.
This Ragdoll Mumma awards one brownie point to his school for restoring a little faith in human kind! Just maybe times are a changing.
By Ragdoll Mumma Kelly