Monday, 30 June 2014

A Painful Weekend

Poor Lucy.  Not only do we have the frustration and confusion after the last panel decision,  but she also has the pain of her ankle injury. She was so keen to get to school this week so that she could join in with the end of year (and for her, end of school) celebrations at Marston Hill.  I called up on the Monday asking if she could return to school, and was told that she would have to be risk-assessed.  Fair enough, she needs to be able to walk up and down stairs etc, in case of evacuation and so on.  Well, she was so keen to be there, since she was supposed to preparing the "leavers DVD", that she immediately tried to walk faster in her cast.  It was not to be though, it was too difficult. 
On Monday she went back to the hospital to the consultant, and to her relief she was given a walking boot.  She had been studying these boots all Sunday, on the internet, so that she knew all about it.  Lucy can be very industrious when it is about her own interests.  But that is totally her, and that is totally her autism.  If it makes sense for her to do something she will do it, otherwise she doesn't get why she should do it.  Easily seen as plain laziness and being inconsiderate of course, and it would be hard to defend the opposite position.  Anyway, so she gets a walking boot on the Monday, and is elated about it all.  She asks me again (dozens of times) what the school said and what this risk assessment could be, and proceeds to practice walking up and down the stairs.  As it turned out, she was not able to get a risk assessment at the school until the Thursday, since we had some very important business on the Wednesday (more about that in a separate post), and was by then very mobile up and down the stairs.  Quite remarkable these boots.  They are like removable casts.
As it was, she was accepted back in school on the Thursday, and we all breathed a sigh of relief.  Two days peace again.  It was getting very difficult having her moping around the house, frustrated about not being able to join in and constantly asking about going back.  Interesting all the same, that she should want to be with her "friends" - but of course we know that she cannot make friends in the same way as others.  For her it is just being in their company, but not interacting necessarily.  They will do the interacting (they are not all the same type of autism and have different problems to her) and she will play along and try to act like them.  In her own way she does interact, but is so terribly unconfident and unsure of her self.  Still, she likes to be around these "friends" and that is good for us.  Some way she will have to build her own life and choose people she wants to be with, and can trust.  It will be a hard route.  The road to adulthood is fraught for her.  We will have to be there for her for a long time yet, even if she does get in to Pearson's. 

Although it is often very hard dealing with Lucy, and she will be very hurtful at times ("you're a terrible parent, you don’t care about me", not to mention how she talks to Amy), my heart constantly melts when I see her struggling, when I see her confused and scared about the world.  When I hug her I feel a close attachment, and I am trying to protect her from all the evils confusions of the world.  All those things that mean she is even more at a disadvantage, all those things that make her feel she is really isolated and forgotten, all those things that could make her feel bad, make her hate herself, make her want to give up.  When she cried to me yesterday about how her ankle hurts her so much she cannot sleep, I weep, since I don't think it is fair that she has all this pain in her head, and then has to have this extra pain in her leg.  Life is so unfair.  I hug her tighter telling her I am proud of her, but she pushes me away, she can only take so much of my emotion - this is all about her remember.