Explaining epilepsy to our children

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018. Follow along!

Bringing up children when you have epilepsy is a constant juggling act.  As a parent you want to keep them safe and protect them from the bad things in the world, yet having epilepsy means that something ‘bad’ could happen in your house at any moment.

Our five year old daughter has an amazing understanding of my epilepsy and epilepsy in general while our two year old is just at the beginning of that journey.  I thought for todays blog I would share our families top five tips for explaining epilepsy to young children.

Start young

Start to sow the seeds when they are little. Don’t go into too much depth and keep it light hearted.  Talk about diversity and disability generally.  Talk about how everyone is different and that these differences make the world an amazing place. Start by talking about difference in hair, eyes, skin colour and move onto disability, maybe starting with how some people can’t walk and use a wheelchair or have to use an inhaler because sometimes they struggle to breathe.

I remember showing my daughter a youtube video of a little girl with no legs running on blades and how amazing she thought it was.  Try to find the positive in disability generally and how strong people can be.  Kids love problem solving and often when it comes to disability it’s all about finding a way to overcome a challenge.

Keep it simple

Kids aren’t going to understand the epilepsy jargon adults can become so used to.  Ditch terms like tonic clonics, absences, unconsciousness and convulsions. Find more meaningful ways to convey what happens to you when you have a seizure in words that your child will understand.

I started by explaining that sometimes mummy’s brain goes a bit wobbly and mummy falls over and shakes.  I used to say that when it happens I can’t hear what is happening and I can’t talk to people.  We would explain that after a little while mummy stops shaking and it looks like I am asleep.   I would explain that I slowly wake up but I might not know what has happened, a bit like when you wake up from your nap and are still sleepy.  Bringing up the topic regularly seemed to help and we added bits of information as and when Riley seemed ready.  Before you know it they will be epilepsy pros.

Talk about epilepsy in everyday conversation

Obviously pick and choose what you share in front of your kids, but making epilepsy a part of daily conversation normalises it for children and makes the topic less scary and more approachable for them.

We read the Epilepsy Action magazine together sometimes, the kids look at the pictures and I choose which bits of information to share with them.  I also share epilepsy news stories and information after attending epilepsy information days at the dinner table; the kids listen to these conversations and often have some great questions to ask.

We also talk about doctors appointments, sticking to the ‘child friendly’ parts and giving the kids a chance to ask questions.  So before an appointment I might ask if they have anything they would like me to ask the doctor and after I might share a simple plan of what the doctor said so for example that mummy is going to try a new medicine to try to make her seizures happen less.

Give them the tools to cope with the situation

Telling your child about epilepsy is all well and good but what I found was Riley’s biggest question was ‘what can I do if you fall over and shake mummy?’  And I think that is the most important thing to address, we all feel helpless in a situation if we don’t know what to do and kids of all ages can do a lot so empowering them to do what they can makes epilepsy a lot less scary.

Keep things simple, just a couple of rules for what happens if ‘mummy falls over and shakes’.  These are the strategies or rules we came up with for Riley.

We had a care phone put in the house when Riley was born and from about 18 months old she could press the big red button on that.  Telling her if anything ever happens to mummy and she can’t help you go and press the red button and you can talk to Nanny and Nanny will get help put Riley back in control of the situation.

When out and about I told Riley to always stay with mummy if mummy falls over and call for help.  I bought her a bracelet that she used to wear which had an emergency contact number in it and details of my epilepsy.  I told her when someone comes to help give them your bracelet and they will know what to do.

As they get bigger you can introduce other ways for them to help as you feel they are ready.  Here are a few of the things we have taught Riley over the years:

• how to phone emergency contacts on my phone (we used a picture of Daddy and Nanny so she just pressed on them and it called them)
• having a front door key somewhere so that they can let the paramedics in by posting it through the letter box if they are too small to reach the lock
• we taught Riley to call 999 and ask for an ambulance
• we taught Riley how to put a pillow or cushion under my head and how to put me in the recovery position
• we taught Riley if we were out and about when I had a seizure to go and find someone else with a child to help (I think this is the safest option when asking your child to approach a stranger for help)

Remember children are resilient

I think we tend to think of our child as vulnerable and our natural urge is to protect them.  But I also think sometimes we don’t give our children enough credit for their strengths.  Our role as parents is to prepare them for the big wide world, all its beauty and all the challenges.  I think epilepsy gives us as parents a great opportunity to prepare them for a few of the challenges they may face in life and also the beauty of diversity and overcoming these challenges.

So I believe that if we explain epilepsy to our children in a simple manner on a regular basis and give them the tools to cope with the situation should it occur, we our helping our children on so many levels.

We are helping them to be OK if we do have a seizure, we are teaching them that disability is a challenge but is also interesting and can be beautiful and we are helping equip them for some of the challenges they will face themselves in the big wide world.

Riley at six years old has an amazing understanding of epilepsy and empathy for disability in general.  Her resilience amazes me everyday.  Benji being the second child is a little behind where Riley was at the same age. All children are different but I guess he benefits from the fact that my epilepsy is now better controlled and he has a big sister who knows so much about epilepsy.  But he remains part of the epilepsy conversation and he is slowly taking it all in, I know that with time he too will have a deep understanding of epilepsy and diversity, he will learn all this from myself, Rich and his big sister.

These are some of the ways we explained epilepsy to our children and it seems to have worked for our family, but every family is different and has its own challenges to face.  I hope that by sharing what worked for us it helps give you some ideas and the confidence to broach the subject with your children.

NEXT UP: Be sure to check out the next post by Patti at livingwellwithepilepsy.com.

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