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.

Wednesday, 13 August 2014

Why do we have to wait so long?

I thought by the time I wrote again we would at least be close to a resolution.  As it is, we are still “waiting”.  

Waiting for others to do whatever it is that they need to do to help my daughter Lucy get what she actually needs for her future.  We are having to fight for Lucy because the local authority is not willing to give her what all the experts say she needs, and what Lucy herself wants.    Instead they insist on pushing this “local” option that is totally unsuitable for her, and which will result in her taking many, probably irrevocable, steps backwards from where she has managed to get to.  

Her confidence has already sunk to record lows (at least since she has been at the Marston Hill) and her depression is increasing as we wait.  We are doing all we can to fight for her.  We are paying for the best solicitor we could find, one who has fought and won cases of this nature before, we have paid for additional assessments, which back up in a professional way all that has been said, both in other reports and in the S139 (LDA) assessment.  The local authority is obstinate and destructive in pushing for its own politically (who knows!) motivated goals.  It doesn’t care about Lucy.  It doesn’t care about the well-being of the most vulnerable people in our society.  It just cares about following its own guidelines and not giving in to people who want it do something right for a change. 

We know it is obstinate from our previous tribunal case with it in order to get Lucy into the Marston Hill in the first place.  It was not prepared to spare us all the iniquity and bother of having to present before tribunal, only to get royally slammed by the judging board for being neglectful and frankly incompetent in maintaining its position.  

And now, despite being very clear to them that we are going through with this, and showing them all the supporting evidence we have, they continue to make Lucy’s life a misery and our lives one big ball of stress and uncertainty, by not just admitting that this is the best way.  For heaven’s sake, it turns out that the overall cost of their (doomed to failure) proposal for Lucy is significantly more than sending her to Pearson’s!  Where is the logic in all this?  

Why are we not spared the pain and frustration?  Why is Lucy not spared the misery, the descent into depression, the inability to look forward to what should be an exciting three years in the next stage of her development?  Why can she not be allowed to enjoy the Summer and plan for all the exciting things she will experience in her new life at Pearson’s?  Instead, she sits in her room all day, getting more and more depressed and losing hope, asking us what is happening, knowing now that all we can say is “wait, it will be ok”, and knowing that we know as much as she does.  And so, every day, she loses more hope, in a solution, in people, in the world, and in us.

Sunday, 3 August 2014

Still waiting then. It's the not knowing that is hardest...

And still we wait, and more importantly, still Lucy waits to find out what will become of her.  Whether the “evil empire” of the local authority will deign to step down from its clearly unsupported and unsupportable position on her needs, and finally give Lucy the news she wants to hear.  The news that she will be allowed to go to Pearson’s College and fill in all the dots in her mapped out future with three years at a place that will take her to the next level.  I am no longer able to tell Lucy anything about what might happen.  Neither is Amy.  We can only, as Lucy, wait and watch the days tick by.  Soon we will know what faces us in the next month.  Either it will be the good news we want to hear: that the authority has seen there is a wealth of evidence against their decision to abandon Lucy to the uncertainties and danger of an unstructured set of courses and a totally undefined “supported living with a PA” suggestion.  That they accept that sending Lucy to Pearson’s would be not only the best thing for her, but also what everyone has been saying and recommending in her LDA, and in fact what Lucy herself has said many times are her wishes.  Either that, or the authority will be stubborn and stupid, and torture Lucy by fighting this in the courts.  Thus leaving Lucy to suffer probably another month or more of uncertainty and stress, and, who knows, perhaps jeopardizing her chance of a place at Pearson’s at all.

Unfortunately, our local authority has a history of being stubborn and stupid when it comes to things like this.  After all, we had to take them to tribunal to get Lucy into her current school in the first place.  I say current school, but last week Lucy left that school for good. I was thinking when driving in to work how joyful we were when we had won our case back then, and we drove Lucy to the school for the first time.  As we entered their grounds, drove through the wonderful scenery up the drive to the main building, and saw that old manor house proudly staunch and beautiful, telling us that everything would be alright now for Lucy. She would be well taken care of and our lives would all improve.  She would have four years of proper professional support now, settle down, make some friends, and be helped through this thing called autism, that none of us really knew much about.

Well, here we stand, four years later, with Lucy all grown up and certainly having made some huge progress since being at Marston Hill School.  But now all alone again, without any confirmed prospect for Lucy’s future.  Are we doing the right thing, holding off on any certainty for Lucy because we want to fight for her and get her what she really needs?  Should we let her take what the authority is offering, and hope that she can cope, gradually getting used to the supported living, maybe getting some menial job in a supermarket (no way she could fulfill her dream in a horse stables with what is on the table), remaining socially inept and nervous and scared?  Or should we fight, and help her get into an environment that will enable her to recognize her own needs, work to deal with them, gain confidence in herself and some pride in what she can actually do, work with horses and get a qualification that will enable her to work some place where she will be happy and fulfilled?  After three years there she would be in a much better position to consider the scary step of living alone in a supported living environment.  After all, any “normal” teenager going off to university say at that age would have big worries about living away from parents.  Surely it is not too much to ask that Lucy, with her social and comprehension issues, should have a few years getting herself ready for this step?

So we wait.  There is a deadline set by our solicitor for the authority to consider the additional evidence we have provided (at cost, of course) in the form of an education psychologist’s report and an independent social worker’s report.  Both are totally supportive of sending Lucy to Pearson’s and of her needs as reflected in the LDA and as Pearson’s recognizes and can support.  They are also critical of the local authority’s proposal, of how unfitting it is, and how damaging that would be to Lucy, not least the risk it would raise regarding Lucy’s well being and what she might do when forced to comply with this.  The deadline to respond is today.  If they come back and still contest our points we will definitely be going to judicial review.  I don’t want us to have to go that far, but we will.  We cannot stop now.  Lucy is too important to all of us.