Sunday, 31 August 2014

The world continues

Whilst we wait for a result from the judicial process, Lucy must still cope with life, as must we.  She has been home for the “holidays” now since July, and is wondering what will happen in September.  Normally she would be getting ready to return to school (Marston Hill), and we would be ready to breathe a sigh of relief.  As it is, there is no more Marston Hill, and there is no clarity of what will happen to Lucy. 

So she has been sitting for most of the “holidays” in her room, drawing up her grids and timetables about her potential future, watching her DVDs over and over again.  She will also come down and watch TV downstairs (on her own).  It all passes the day for her.  It all stops her thinking too long about a future she cannot define.

She will ask me regularly about where we are, about what will happen and why we have not yet heard anything.  I do my best to explain that the court has its own timetable and we can only push so hard.  It doesn’t go very far.  Teenagers in general, and autistic ones in particular, have little understanding for other people’s schedules and priorities.  We actually don’t have much patience for this either at the moment.  Why can’t this all be treated urgently and rushed through?  Surely they know what pain and anguish Lucy is going through?!  I guess we are not the only ones, not the only priority of the courts.  It feels we have been waiting for so long for justice to prevail.  The longer we wait the less we feel that justice is out there and the less we feel that we have support.  It is strange, but however sure you may be that you are in the right, and however much evidence you have piled up to support your claims, time is the biggest enemy to your confidence.  Time dulls and takes the edge off everything.  With time your doubts creep in, with time your enthusiasm dampens and your energy is sapped.  That is what is happening to us as a family.  Even for me. I am normally the person that is not affected by stress, and always able to hold my head up high and be the eternal optimist.  I don’t do doom and gloom well, and hate to be in that position.  I will not be defeated.  But even I am feeling the strain, and quite frankly, I just want it all to be over.  I want the pain the stop, the pain of not knowing, the pain of having to give Lucy answers to questions I have no answer to.  I want Lucy to stop hurting, to stop not knowing.

I feel her pain so much.  She is so young, so isolated, so unable to look after herself.  The big world beckons.  Those people in the council are telling her to get on her bike and face the world they are throwing at her.  She cannot cope with this, and wants so much to be able to progress for another 3 years at Pearson’s, where she will be in a community, will be looked after on her terms, will be able to learn so much more about how to cope with this world.  All the time the promise of this is beckoning, but the answer is not coming.  All the time the threat of the “alternative” world of fear and uncertainty is hovering above her head.  She stands there alone in her mind, scared and deserted. 

She comes down in the evening to say goodnight, and indeed this is very sweet and nice, since we only recently got that level of interaction.  She comes down, complete with all her OCD checks about whether the house is safe, and commitments from me to “check everything”.  But then she will also at that point stop and think and begin a conversation about what has been on her mind all day (but she didn’t talk to us about all day).  She is standing by the door, so the escape route is there and open to her.  If we start asking questions she can escape.  But she still wants to discuss, and is only able in this way.  She tells us about “when I get in to Pearson’s” how she is going to spend her money on this and that, how she will come back sometimes to see us, how she will keep in touch by phone, but needs to get on a different network etc.  She is playing simple scenarios to us to make the dream more real.  Does this sound right?  Then again, sometimes she will play the scenario of not getting in, and having to live in supported accommodation, and how she will NOT be going to college and how she would NOT be using a PA, and so on.  For both of us it is stressful and exhausting listening to her, but at the same time beautiful, because we so love to hear her talk and sound like she is growing up and trying to communicate with us.  It is stressful because we know that we only need to say one little thing in response that is deemed by Lucy to indicate we are “not listening” or are “telling me off”, and it will all end, normally with anger and abuse.  Mostly we are lucky, but we are living on a knife edge every evening.