leonie

These are a few things we have done, to support our beloved son Cameron, who began having seizures when he was very young. He is now 23, and a wonderful young man, even though his seizures have not completely gone. I hope they may be helpful to other families, who may be still at the struggling stage.

Firstly- a summary of main points-

Ø Get a doctor you can talk with, and who makes you feel he/she is determined to help, and give your child the best medical support, to lead as normal a life as possible.

Ø Show compassion and care, and lots of love to your child. Let them know you will always be on their side.

Ø Encourage your child to lead as normal a life as possible, and come up with ways to do things, rather than place lots of restrictions on their life.

Ø Encourage them to gradually take responsibility for managing their epilepsy as much as they can- this gives them some control over a condition which can make them feel they have no control

Ø Try to focus on all the things they CAN do-

Ø Make a ‘grateful’ list of all they have in their life, and really try to give them skills to keep them positive

Ø Make sure they do not have the extra burden of negative parents, and help them to avoid depression and self pity

Ø Let them know that while it is sad and unfair they have epilepsy, it is no one’s fault. That is just how it is, and it is important not to let epilepsy take over their life, and hold them back any more than necessary.

Ø Make sure your child know if they don’t want to bother you with a worry (sometimes Cameron doesn’t want to worry or upset us) then he/she can always ring Epilepsy Queensland. Just knowing there is someone there to listen and support them, someone who understands epilepsy- can give them reassurance.

Ø Self esteem often suffers in children with epilepsy, and so anything you can do to improve this is important.

We don’t like to hear Cameron be called an “epileptic”. His epilepsy is such a small part of the wonderful person he is, and a horrible label. We let him how proud we are of the way he gets on with life, and doesn’t let his epilepsy be an excuse to give up on things. We praise him for his efforts to live as normal life as he can, while still avoiding activities he knows would cause a lot of fear for his family- this is only a couple of things like swimming alone, or rock climbing.

When we first knew Cameron had epilepsy, we were upset, because we thought how this would affect him and his possible loss of a ‘normal’ life. But we have tried to help Cameron focus on all the good things he has in his life. On what he CAN do, and not what he can’t do.

We try to understand how he feels, and we commiserate with him and tell him how much we wish we could just make it go away. But we can’t make it go away, so we reinforce how dangerous self pity and letting yourself slip into depression can be, for anyone with a chronic condition.

We have used Steven Hawkings as an example of a person who has faced up to his restrictions, and not given in. Role models are important to us all, but especially to young people, and so Cameron is also aware of all the other high profile and successful people who have epilepsy, such as Tony Greig, Hugo Weaving, and just recently, Wally Lewis, as well as all the famous people from other countries, and throughout history.

We try to help Cameron to look at what he has. For example, he is lucky to live in Australia, where he has access to good medical care, and medication. This is not the case for so many people in the world. He has lots of people who love and care for him. We are open that it is normal to be angry and sad, and feel sorry for yourself occasionally if you have a chronic condition like epilepsy, and it is ok occasionally to have a good “sook”. But we also make him aware that if you give in to it too often it will ruin your life far more than the epilepsy could.

We try to ignore Cameron’s epilepsy day to day, unless he is having a seizure- then we encourage him not to focus on it too much, and to try to get back to normal as soon as possible. But we do not put him in danger, so at the moment he is not able to drive until he is free from seizures for two years. We try to be prepared, but not to worry about “what might happen” - and just deal with what has.

We try to make Cameron feel loved and cared for- which he is- and let him know we are here to help and we will do everything we can to help him cope. We have sought out a specialist doctor who Cameron feels comfortable with. We feel his doctor is just as determined as we are to make Cameron’s life as normal as possible, and to get his seizures under as much control as we can.

We have encouraged Cameron to speak honestly about his epilepsy, but feel there is not always a need to tell everyone he has epilepsy, as soon as he meets them. On the other hand, we have tried to help him to see that just as some people have to take medicine for asthma and others need glasses, epilepsy is just another minor set back and he just needs to find the tools to deal with it, and then get on with his life. It is not a good idea to hide it, as it can scare people if he has a seizure and they may not know what to do, or how to help him. At the moment, he is not driving, but his workmates give him lifts, and know what to do, if ever he should have a seizure at work.

Cameron has gradually been encouraged to take control of his medication, and responsibility for himself- he is now 23, and looks after his epilepsy completely, himself. To help with this, we have an exercise book where we note visits to doctors, changes in medication, and if he has a seizure, whoever witnessed it writes a brief summary of what happened. That way we don’t go to the doctor with him, unless he asks us to. It also means we can set his epilepsy aside- we just put it in the book, and don’t think about it unless we have to.

Day to day as Cameron was growing up and at school we made sure that whenever he was in someone else’s care, they knew about his condition, and what to do if he should have a seizure. We told his friends if they were worried at all and they could not get in touch with us, to just call an ambulance. That way they did not have to worry, and we could allow Cameron to have lots of freedom- important for his self esteem and sense of independence. So far, only one of his friends has had to ride in the ambulance with him, and we made sure we praised that friend and that he knew how much we appreciated his maturity in helping Cam.

Another important tool is a mobile phone. That way he can always call for help or if someone finds him and can’t get sense from him, they can use it to find someone who knows him.

When Cam wanted to do something that might put him at risk, we tried to make it possible , while at the same time, keeping him safe. For example, he was not allowed to go swimming without an adult to watch him. This was usually me, and although it meant I have had to work part time only, it was worth the minor financial loss, to give Cam more opportunity to do the things other young people were doing. On other activities, we have tried to have a ‘just in case’ plan, to reduce risks.

So Cameron did most things that young men his age did, as he grew up. He now has a job, and nice girlfriend, and plans to buy his own home, and live independently.

We will always worry, and it is so tempting to try to protect him from harm, but if we did that would only mean Cam would not live his life as fully as possible, so we try to let go, and just be there to help him when he needs us.