Wednesday, 19 January 2011

Epilepsy: Was it really a good idea?

In my attempts to deal with The Boy’s epilepsy I think I go too far. So desperate am I to ‘get it right’ that I spend hours on line seeking answers to questions I have never even thought about let alone ask.
I have become rather zealous and indeed some might say I even proselytise a bit like a Baptist preacher on unsuspecting passers-by. I don’t mean to scare people I just want to share. I want people to understand and not think my son is any different to them. But that is not going to happen really is it? Because face it, he is different.
So most of the time I frighten people away, much to the embarrassment of The Boy who hunches his shoulders, digs his hands further into his pockets and says things like: “Muuuum!” while focussing his eyes on the floor; in fact anywhere but at me.
Now, while writing about epilepsy on the blog, I got the opportunity to get involved with World Epilepsy Day on March 26th 2011. A great project that raises the awareness of epilepsy around the world though a host of volunteer led events and of course the wearing of the colour purple.
I put The Boy up to volunteer as an Epilepsy Ambassador and he got picked but now I think I may have  pushed it a little too much as The Boy is becoming too well known for his illness at school and not for himself. And I fear he is becoming even more isolated.
I mean it is bad enough that he’s not playing Rugby with the other boys in his class, (although he has whispered to me that he is relieved as the showers which the boys have to take after playing Rugby are more than frequently cold) and now I come along and force him to stand up in front of the whole school to talk about it and his Epilepsy. He is very happy to do it but I am getting cold feet worried about what  the children will think, worried about how they will treat him afterwards. Will he be “The Boy with Epilepsy” for the rest of his school career? Am I in fact in danger of turning him into a hypochondriac? Someone who defines himself through his illnessess?
Should I hold hard and wait a year? Should I do it at all? Am I doing it for the right reasons? So many questions and I have no clear idea of the answer…


Expat mum said...

I've been through this with my kids learning challenges. When they are younger they really don't want to become the poster child for their issue, but one of my teens has become an advocate for herself and others in a big way.

He may be a bit young to carry such responsibility; on the other hand, it's a great way for other children to understand his issue. You might want to talk to him honestly, make him understand that he won't be letting you down if he doesn't want to do it. He might surprise you and do it anyway.

Spencer Park said...

A difficult one, for sure! I've had similar concerns with my daughter being diagnosed dyslexic. Since being diagnosed it is as if she has an excuse to not try!

Miss Sadie said...

Difficult question, Tattie.

Maybe it is important for The Boy to say, "I am more than my epilepsy," and count the things he can do like any other ordinary boy. And then, in due course, to show more and more of what he can do, while he is living with epilepsy.

But I don't know him, so I don't know what he would be comfortable saying or doing.

Jude said...

The decision should surely be his. If his epilepsy is properly controlled, it doesn't have to be such a big deal. My sister's epilepsy (of the grand mal variety) has had very little impact on her life in general, apart from a few incidents. Those people who needed to know about it did, and those people she chose to tell, but that was all. I think it's horses for courses. Just make sure you don't confuse your own needs with his.
Thanks by the way for the Award - not sure when I'll get around to following the instructions for it!

Posie said...

There is honestly no such thing as normal, every child is individual , each has there own struggles in life, their personal achievements, strengths and areas they need support with. I agree with Miss Sadie and I also think as a mum you too know your instincts wishes,

legend in his own lunchtime said...

It's a thin line isn't it. I agree, your son needs to define himself for who he is, rather than what what he is. I'd get him more involved with the decision making. Other people only need to know if he wants them to.

Go on you know you want to...


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