Trying to organise things

A few weeks ago I had a call to tell me 12 had a two-day place to go to Surrey to be assessed at a center for epilepsy. 12′s neurologist has been wanting this to happen for years, in fact she has been keen that 12 actually attend this school.

Hub and I are not.

Here’s the thing, 12 is just not cognitively up to understanding why she would be away from home, why we had taken her somewhere new and left her. I SERIOUSLY doubt any school could lead to such levels of progress to make up for the upheaval to 12′s life. Remember, 12 is already attending a modern special needs school with well-trained staff and great facilities. It isn’t a specialist facility for epilepsy but that’s about it. They have great activities and even put on a fashion show last Christmas.

Clearly 12′s neurologist feels that 12′s epilepsy is something that requires further investigation and help. 12 can go for about a year without a seizure then she has lots and they can be difficult to get back under control.

I wonder however how much of this is to do with 12′s behavior. 12 has wrecked the doctor’s office before now, knocking over her computer amongst other things. Plus 12 tends to not be very settled in the waiting room, we have to take her on little walks down corridors while one of us stays to listen for her name to be called.

Fine, but remember, WE are the ones who look after 12 and have to live with her and her behavioral challenges, not the doctor. It isn’t easy. There have been times I genuinely wondered how I would survive the day. Even good days are relative, they’re good for 12, not necessarily for any other child.

So, if this place can provide some insight to 12′s epilepsy and its management or her behavior and ITS management, then great, but they aren’t having her. My girl wouldn’t have the first clue what was happening to her, she would miss us, she would feel abandoned.

And in case you are in any doubt, we would miss her. She might be a challenge, she might even be a pain some days but she is OUR girl. We’ve found the strength to manage her so far, perhaps one day it will be too much for us, perhaps one day 12 will have more understanding and want to live in some sort of sheltered accommodation. Until that happens I’m not giving up without a fight.

Tomorrow I see a nurse from the center at 12′s school to discuss the two-day visit we will be making next week.

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