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.

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.

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.

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.

How much more bad luck?

Sometimes I sigh and say "When will this end?! Give her (and us) a BIT of good luck, please!".  It was just so this weekend.  We get a load of voicemails on the Friday morning from the school saying that Lucy had fallen down some stairs and hurt her leg.  She is being picked up by an ambulance and can we come to the hospital.  So I am at work, about an hour and a half's drive away.  Amy has her hands full, not just preparing for the impending influx of my family this weekend but also she is trying to deal with the Hungarian guy from the water softener company, who is trying to tell us that the mass of water in our cellar right underneath thew water softening machine has nothing to do with the machine, but apparently it is osmosis from the surrounding walls, or something.    Anyway, she is totally stressed and has her hands full.

She calls me at work and we both collectively do our sigh, and think "when will this end?".  Then we say the same thing to each other.  I know she will ask me to come home.  I can't though.  I have an important checkpoint meeting later today, and since I have only just started in this new contract I don't want to push my luck.  We decide, for the moment, to leave the voicemails unheaded for now, and see how far the school can deal with this.  Can they really expect working families just to drop everything?  We thought they could probably cope for a little bit, and decided to bide our time.

I took a proactive approach though, since I knew this would not hold out, and that Amy would need to get on with her preparations.  I didn't want her stressed out too much.  I want her to enjoy this evening and not be too exhausted over the weekend.  We have a lot of work to entertain and feed my family...  So I check my diary.  I have the meeting at 12.  I go over to Ron, who I need to have this checkpoint meeting with, and ask if he is able to bring it forward. Fortunately he can, and in 20 mins we have our meeting.  I decide I will finish up the rest of my work here and take the afternoon off.  It turned out to be a good plan.  Amy calls back a while later saying that she was not able to hold off the influx of calls from the school any longer, and has been told that someone has gone with Lucy to the hospital but needs to leave by 2 since she has her own kids to pick up.  We are both very grateful to the school for sorting this out.  I know Amy would not be able to find the hospital (it is a new one we haven't been to before), and would not want to subject her to this.  She is still dealing with the Hungarian who is refusing to admit the softener is at fault, now claiming that somehow there must be a pipe behind the (foot-thick) concrete that is seeping through it.  It would be an interesting new fundamental force, somehow wrapped up with the powerful osmotic effects of hard water, but Amy is not having it, and continues her defence.  She is relentless with such things!  Well, I am sure she is right.  Just fix the damn thing will you?!

I tell Amy it is ok, I can take the afternoon off and be at the hospital before then.  I ask Ron and all is fine with that.  I leave at 12, into a wonderful sunny afternoon.  At least that is working out, the weather.  We really could do with a dry BBQ this year...

A good drive back means I actually get to the hospital an hour later and am able to relieve the school assistant, who is very pleasant and I am very grateful to her for doing this.  Poor old Lucy is lying on a bed with a drip (she was given morphine earlier to kill the pain).  Apparently she had stumbled over the last few steps while rushing out, and had landed with force on her ankle.  Ended up breaking both ligaments, ouch!  At the hospital they straightened her ankle (no, I don't think I want to go into that procedure, thanks...) and plastered her up.  So now she is pretty much immobile.  I wheelchair her out to the entrance, get the car over and she struggles with the crutches to get in the car.

This will be a fun weekend...Is Lucy not due some luck soon?  What with all the stress of the colleges, the not knowing about her future, and now this?  Poor love is feeling rotten, although she is also quite pleased that she has something interesting about her now.  Perhaps that is the saddest thing.  She feels by wrecking her ankle (not intentionally) and suffering all this pain, that somehow people will find her more interesting.  In reality it will be a brief rush of interest and concern, after which it will fade and that will be it.  She will be left with the inconvenience and pain of having this lump of plaster on her leg, will not be able to move freely and decide for herself when to interact, and will of course be even more left out than before.  She will miss out on all the fun stuff going on at school as the final term comes to an end.  The final crowning disaster to fall upon Lucy as she leaves this school.  The leavers' Prom she will not be able to get involved with, the fun and games as she sees her "friends" for the last time.

We will do out best to get her included during the weekend's events and try to worry about her whilst worrying about the other 15 people that are descending onto our home this weekend, but it will not be enough. We also know that if we try too hard to make Lucy feel better it will all get thrown back in our faces, as it always does.  Lucy apparently "loves" us too much to be polite and considerate towards us.  I am being cynical, that is what we were told a few years ago by way of explanation as to why our lives were so shit.  We have got used to that, but it still hurts and winds us up.  We just have to remember that Lucy only has us.  Who else can she shout at to express the frustration of her whole life?  Strangers are treated very well.  We have the honour of being treated badly.    But then we are not autistic, and it was our fault in the first place, for giving her life (as Lucy tells us).  I find it difficult sometimes to disagree with that assertion.

My future just disappeared!

So it has finally been made, the ruling from the local authority on how Lucy's needs are going to be satisfied.  They met for their panel meeting last week and I spoke with Jane, who heads up their Inclusion and SEN (special education needs) area.  She explained how long they had studied Lucy's paperwork, all the contributory reports, the needs assessment, social care assessment, etc etc.  Oh how they discussed and deliberated!  How they also read all the information which points irrefutably to Pearson College as the place that will attend to what Lucy needs, and put her in a position to make something of her life.

And what did they decide?  After all this consideration and bearing in mind how difficult it is for Lucy to transfer skills from one environment to the next, they conclude that it is pointless to send her to Pearson's!  She would apparently come out after three years not any the better for her experience!  She would be at exactly the same stage coming out as going in.  Where do they dig these people up from I ask?  These are supposed to be those we entrust the future of our most vulnerable people to.  They have the power, with council funding, to turn the lives of those not expected to be successful, contributing members of our society, into worthwhile and enjoyable "different" lives.  Because that is all they are.  The people we used to label as "mentally disabled" are often, and particularly in the case of someone like Lucy, with high functioning autism, just different in how they perceive and understand the world.  How they are able to relate to other people and interact with them.  How they see their own lives in the grand scheme of things.  They are different, find it harder to comprehend, need different ways to teach them and show them.  Need differently skilled, patient, people to guide them through the world and how they are to deal with it and behave in it.  Pearson college does just this for Lucy. 

The local authority's solution?  Well, since Lucy would not actually really learn anything at Pearson's, but given that they agree othewise with the needs assessment (huh??!), she would be put on the fantastic "local colleges first" scheme, whereby she would be honoured with 3 days of 5 hours each at a local establishment, in this case a farm about 20 miles away (how local is that?) which will provide her access to horses and non-academic BTEC-like qualification.  Yeah, right.  Lucy will drop out of that for sure, and we all know it.  She would not come out with any qualification, and she would not get anywhere close to her dream job.  What about the rest of the time?  Well, she would be treated to the "Twofold" system, which places such people into some place of work, by hook or by crook, so that the council can tick that box.  No matter if the person does not want to do that work, or if it is menial and without future.  Main thing, they meet that little obligation.  Also, she would have a marvellous opportunity to experience the "Re-enablement" scheme.  Heaven knows what that is, but I would guess a few hours a week being forced to interact with disable people she doesn't want anything to do with, or be encouraged to "join in" with stuff she has no interest in. 

She would be accommodated in supported living, with a "PA" to help her with stuff. 

All this would be a very costly provision, especially the supported living and the chauffeuring to the farm.  In fact, it is quite possibly more expensive than sending her to Pearson's.  Whereby Pearsons covers about 10 times the needs that Lucy has.  The council's suggestion fails on so many counts to satisfy the needs of Lucy as laid out in the LDA. 

You would think that it would be a straight forward matter now for me to challenge the ruling.  All the evidence points to the right solution.  But that is not how things work in this world. There is no clear legal way to fight this.  We certainly want to try, but fear it would be something that would take months, probably more time than we have left until September when Lucy's place at Pearson's would expire.  We would have to traumatize Lucy with the whole process and not be in a position to give her any hope.  Even engaging a lawyer, there seems to be no precendent for this.  No process to follow.  It would be placing all our hopes on Black and getting Red at the last moment. 

All Lucy could think about when she found out was "My future just disappeared!".  All her plans, which she maps out repeatedly, every weekend, for the next three to four years, have been intermeshed with being at Pearson's (yes, we told her not to raise her hopes, but she needs to see a world in the future, she cannot deal with the uncertainty.  She made up her own future).  All that world of cards just came crashing down.  She was left with a dusty, empty, post armegedon world.  She didn't know where to go.  She could only sob in her room and wonder what the point of anything was.  We could do nothing to help her.

But we could do something.  If only we had £50k a year to fund Pearson's ourselves.  So my plan is the following.

1. pursue the legal course anyway, but don't rely on it for Lucy's sake.  Give her hope somehow.

2. find some way of borrowing the money we need to fund Pearson's.  No idea what options we have.  I only know we have no money in any savings to pay for this.

3. Get rich.  Hmm.  How do you do that?

Another disappointment

Saturday it was time for Lucy to take her theory driving test again. It would be the fifth time. The exam consists of two parts: hazard perception (clicking in time to avoid hazards on the road whilst watching videos of real driving) and multiple choice theory. In the past she has always passed one part while failing the other, normally by just a few marks. It has been a terribly frustrating and stressful time for her. 

As an autistic person she actually is quite able to drive a car, even a manual one. Granted it has taken her a long time and many lessons to learn, using an instructor experienced teaching those with special needs, but we have been very impressed with what she has achieved. We don't actually want her to drive because of the cost and because she has a freedom pass that allows her to travel free on buses and trains. However her determination to get what she sees as independence through having the freedom to drive, in fact every young person's dream, is admirable and we are actually very proud of her. Especially since she has been paying for the lessons herself, making good use of her benefit money. 

She cannot get her licence without first passing the theory test. So it is attempt five now. After the last failure I called the dvlc company responsible for running these tests, to find out if there was a way to accommodate someone like Lucy given she has difficulty comprehending the multiple choice questions despite knowing very well what the rules are. Her difficulty is understanding what they want to know. Why do they keep saying it in different ways? She just remembers how they ask a particular question, what words they use to see if she knows who has right of way, or what a particular sign means she has to do, or whether she needs to be careful up ahead. She knows all this, and is a very safe driver as a result. However, the tester tries to be clever so as not to ask the same question in the same way every time! You know, this can ONLY disadvantage someone like Lucy. It does not mean "aha, see she didn't really know how to obey rules!"  No, it just means that you are messing with her head, and whereas she totally understands what the answer is if you ask her one way, she will process it as a completely different question if you rephrase it. And this doesn't mean she doesn't understand how to obey the rules of the road!

How horrible must that be. It is like learning something in one language and being tested on it in another language. How unfair for Lucy. So I tried to address this by calling the test centre. I wanted there to be someone who could rephrase the questions for Lucy without actually telling her the answer. Despite my protestations all they are allowed to do is provide a "reader" who can't rephrase and extra time to do the exam. Well Lucy has no troubke reading, it is comprehending! In the end I just went for extra time. It can't hurt. 

As it turned out we could only get 8am last Saturday and it was a long time booking in advance. So by the time the exam came there was plenty time since the last failure for Lucy to get herself well wound up. She was more negative than usual, this time claiming she would fail. Unfortunately when you go in with this attitude it usually becomes reality. She did not sleep much on the Friday night and as a result(I think) managed to fail her hazard perception. No excuses really for that. I also found this a very difficult test. It is normally touch and go if you get enough points, but she did quite badly. Probably because she was tired and not alert. Shame because she managed to pass the theory! So once again for the fifth time a disappointment for Lucy, and still she plods on, hoping as ever that she will drive a car soon. 

On the Sunday we passed by the local used car place and she stopped and showed me which car she would like to buy. I imagined her one day driving it, being independent, with some kind of job that makes her feel like a normal adult and a useful person, with a bit of confidence to deal with the world. It was all I could do to stop myself welling up, as we linked arms and walked home together. 

Some things make me smile

It is not all doom and gloom and misery in our house.  We have our moments when even living with autism doesn't have to be so painful.  These times are not so frequent, but when you spend so much of your life on a knife-edge, not knowing when the next scream will erupt, and feeling mentally exhausted as a result of trying to manipulate situations in order to avoid explosions, well, they stand out a bit more. 

For example, I get a great feeling of pride when I think that my daughter is coping at all with this.  She will sometimes decide to go off to town (about 5 miles away) to "buy a new bag".  She will plan this of course.   She would normally plan to leave early on the Saturday.  She has a pass that allows her to travel on the buses for free.  She is very good with buses, at least the routes she knows.  She will know which bus to get on and is comfortable travelling on it. 

So for a "bag mission" she would travel to town by herself, carry out her mission, coming back soon after (why stick around?).  It would take about an hour and a half all in.  She has bought several bags. On coming back she would normally not show us what she has bought, but Amy likes to know, and so asks her.  Reluctantly Lucy would present her carrier bag (actually dumping it on the floor).  We typically find various sweet wrappers, drink bottles (fruit juice and what-not) and maybe liquid soap (she often buys liquid soap), and of course the handbag.  It is sweet, because it makes us think that Lucy is sort of trying to be a woman (women have handbags) but at the same time not wanting to be this (so it will be a big thing, good for carrying lots of "stuff").  Whilst we look we can't ask any questions, or if we do it will be simply "yes/ no" answers, followed soon after with "stop asking me, I don't know, ok!" at which point we need to shut up or things will escalate.

She bought a new bag the other day, and what delighted me was to see her going to school on the Monday morning carrying it on her shoulder.  For all those reasons of social isolation, inability to conform and understand society and the underlying fact that my daughter Lucy is now a woman, I feel love and pride when I see this.  It is a sign that inside all the confusion, fear, reclusivity, depression and loneliness, there is the germ of a normal woman trying to express herself.  I know, I shouldn't  read too much into it.  However, amid all that anger and sadness, there really is a person who wants to be just like everyone else.

I hate my life

"I hate my life!".

This is what we often hear from Lucy.  It normally results from all those thoughts coming together at the same time, and her finding no way to deal with them.  Any time she cannot cope with her situation, or something has gone wrong and it is her fault, and probably she has made someone upset and the balance in her world is wrong - that is when she falls into desperation and decides that her life is rubbish.

It is a terrible thing for a parent to hear of course.  You have given this person life, and you have done your best to make that life as comfortable, loving and enjoyable as you can.  And then you hear that person say, "I hate my life".

It is not difficult to understand where she is coming from though.  Again, I have to imagine myself in her head, and I think of it as being in a loud engine room with lots of contraptions knocking and rocking, steam coming out of some of them, an underlying hum of industrial noise all the while.  All these noises, whilst she is trying to think, trying to figure out what the world means and what she have to do to make it all feel better.  And all the time she is not able to do it.  She cannot figure it out, she is stumped.  Meanwhile there are people, the people close to her and those she doesn't know so well, and they are all demanding things from her, wanting her to do something or act in a certain way.  She doesn't understand most of the time what they are asking for, or what she needs to do.  She just wants to do what they want her to do so they will stop asking.  Leave me alone, in this engine room.  Let me be at peace, in my noisy world.  Yes, I think I would hate that too.

She communicates with me via text messages.  She can talk to me too, but she prefers the texts, and in fact I prefer the texts too, since I can communicate something to her without being misunderstood, and she can read and re-read, and understand things at her own pace.  However the texts can also be a weapon, an emotional knife.  I read them sometimes and feel like a dagger has entered my heart.  Words like "You hate me", or "I hate you", or "You don't care about me, nobody does", or when I don't answer right away "Fine, you hate me".  But they are also messages to tell me how depressed she is about the world.  how else can she express this?  She will not sit with a girl friend and chat, like other 19 year olds might.

So when I received this message the other day:"I'm fed up with life I really am", I no longer worry too much about what implications that may have.  I am pretty sure she will not do anything dramatic.  It is her way of saying that she can't cope with being the way she is.  I have no answer to those messages though.  I cannot tell her "It will all be alright" or "There is nothing to worry about".  The  best I can do is say to her "We love you very much and care for you, and we will always be there for you, whatever happens". 

"Why me? Why me? Why me?" she has often cried to me, whilst I sit with her after some traumatic event (probably consisting of her screaming, swearing, slamming doors, and then regretting it all).  It is all I can do just to sit there and say "It is not your fault, it is bad luck", all the time thinking "Poor child, what have we done to you?  How could we have given you such a rotten life?!".  It is hard not to blame yourself for giving someone the gift of life if it means she is miserable most of the time.

Chinese water torture

I seem to be Lucy's rock.  She depends on me more than anyone else in the family.  The reason for this? I guess she feels I understand her more than others do, and manage to interact with her in a way that doesn't immediately cause her to fly off the handle.  But we all are learning still how to deal with Lucy.

Recently she has been very provocative.  She often comes into the kitchen and just stands in the corner, playing with her phone.  She will stand in the way, occasionally say something while someone else is speaking only to claim in a resigned way that no one listens to her.  If we ask her what she said she will not repeat and blame it on herself and her inability to articulate thanks to her "disability".  She will often play on this aspect, using it as a convenient excuse for all miscommunications or failure to interact with us. 

I don't think she really wants to wind us up, I think it is her own isolated world that is getting to her.  If I try to imagine her world I see a brain that cannot process properly, trying to make sense of the world and the stuff that gets thrown at it.  At the moment she is completely overwhelmed by the lack of certainty in her own future.  She just doesn't know what is going to happen post July.  Allegedly she has a place reserved for her at Pearson College, but she also knows that this is not going to happen unless we find some way of funding the £50k a year it will cost.  To do this we have to rely on the Local Authority for funding.  And the LA is delaying, and not deciding, and most probably will say "no" to Pearson, instead recommending some lower cost (in the short term) set-up that uses "local colleges".  They are all about "Local college first", which grew out of the need to cut costs.  The guise is not so much cost-cutting as "keeping the young adult within their local community".  Great.  But of course Lucy is not part of any community.  She has no contacts or friends in our community.  Why would she need to stay here, when she would be so much better cared for at Pearson?

This is our constant battle, or rather the one that we are still waiting to get engaged in.  Once we know what the LA are suggesting, we will know how much funding could be released.  Once we know that, we will be able to compare with the cost of Pearson? They will suggest something like:

1. Access a local college.  This will be a "normal" college I think, and she will be expected to take on a non-horse related course, like cooking.  She will be "supported" by an "assistant", who will help her deal with a course and environment she cannot cope with.
2.  The local college will be a 3 day a week thing, and will not cover the "life skills" part of her needs, so the LA will provide access to support that will allegedly teach Lucy these skills.  That will be for another 1.5 days.
3. Maybe, put her up in supported accommodation, presumably locally.

That is the best I am guessing will come out of their discussions.  It will be a good result if we get (3), since that means the social services are prepared to acknowledge that Lucy cannot live with us, and she also cannot live on her own, so it is their responsibility to look after her.  It would be funded then.  That would be a big cost.  I have no idea how much though.  (1) and (2) would use the word "Access", and that means that Lucy is "invited" to attend, but cannot be forced to.  Lucy will reject this.  However, this too will have a cost associated with it, and in principle a funding source.

Once we have the recommendation from the LA, we can do something with it.  We can work with a lawyer to dig into what it actually means by way of funding, how it covers the needs that Lucy  has.  The LA is compelled to meet those needs.  Our objective would be to establish that the funding available for the (wrong) provision could be used better for the (right) provision at Pearson.  

So we are still waiting.  The panel is next week. 

This is nerve-rackng for me and for the rest of the family, you can imagine how it is for Lucy.  She doesn't even know how to start to handle it.  We tell her best we can where we are.  But if you have been expecting a decision in March, since December, and planning your year based on that, then how can you cope wtih not knowing and it is now June?  The world looks ugly and against you.  So you have to  take that out on the only people you can: your family.  At least you know they will not abandon you.  At least you know if they are angry at you it will be ok again.

And so we all suffer.  And we all recover. And we all do it again.  The cycle must stop, before we all go mad.

The day before going back to school

Although Lucy is 19 she still goes to school.  It is a "special" school and we fought long and hard to get her in it.  If we hadn't fought for this she would have long since left mainstream school and would probably have now been living on benefits and terrorizing us from her room for the last three years, with no hope of achieving anything in this world.  We may be heading in that direction again though, since it is soon time for her to leave Marston Hill School and take on the big bad world.

Lucy lives at home during the weekends and holidays, and (still) at her part residential school during the week.  We are a pretty standard family, living in a house we can barely afford, struggling as others do to balance what we pay out with what we bring in.  My name is Pete and I am a freelance contractor in the IT world, invoicing through my own limited company, and although I get decent rates I don't always have a job to go to, so need to plan for arid times (and we have actually just come out of one).  In summary, we get by but don't have much in the way of savings kicking around.  You will find out more about Lucy, me and my family as I add to this blog (if you are interested!).  But this is not really about us in particular, this is about our experiences living with that horrible, pernicious, brutal and indiscriminate condition that more and more people are seeing turn their world upside down: Autism.

Now, autism is not the same for everyone.  In fact, I have come to believe that autism is actually different for every single victim.  There is a "spectrum" they call it: victims find themselves somewhere on the Autism Spectrum, ranging from severely impaired, through less severe, right up to the unbelievable "savants", or those Rain Man like people who display remarkable abilities in restricted areas, but at the same time get penalized with  a lack of social abilities, which means they cannot form relationships with other people (or at least like non-autistic people would imagine).  However there are not many of these people.  Most are "somewhere on the spectrum".

Lucy is no savant.  She is also not severely impaired.  She lives "somewhere on the spectrum", towards the higher end.  The test levels are quite low, so despite qualifying as having "high-functional autism" Lucy can't pull more than a 50 IQ rating and to all intents and purposes has the thinking ability of an 11 year old.  It is of course always dangerous to go down this route though, since we are essentially comparing apples with oranges.  The "normal" way of thinking just doesn't apply to Lucy.  Her chief issue is that she can't handle verbal processing.  So apart from the autism related issues (strictly speaking to do with inability to interact socially), she cannot process verbal information well at all.  This means that she cannot really understand the questions on an IQ test particularly well anyway.

Anyway, this weekend we have the "day before return to school" issue.  This means that Lucy is totally wound up.  She is preparing for the change from being at home during half term and going back to school.  Any kind of change is tough for autistic people (I think, in general), because it is scary.  The world is scary anyway, because it is just not understandable, but having change on top of that makes it even worse.  Imagine it as having to do a job in a foreign language (one you do NOT know).  You are expected to carry out this job according to the demands of, say, the retailer you are working for.  You know only a few words, and you have been trained to stack one set of shelves with produce you are not familiar with, but after a while you recognize the shapes and patterns, and know when you are stacking correctly.  Eventually you get so good at this that you can quite confidently go about your job.  You feel relaxed and satisfied that you can cope with this world.  You still have no clue what it is you are stacking, nor what the reason is for doing that, but you know that if you keep doing it the world will not bite you and no one will punish you.  Then one day someone tells you to do the same thing on the other shelves, with this other produce.  For the autistic this is impossible.  The change is not mild, it is enormous.  The world has just opened up its massive jaws and threatens to rip your guts out.  That is scary.  Now, despite the fact that Lucy is in fact familiar with the home-school change, she still finds it scary and uncertain every time.  Those frightening jaws do not just disappear.  Every change threatens her equilibrium, understanding of the world, ability to deal with it, and her emotional stability.  Even the thought of her world changing is frightening.  That is why the day before returning to school is so hard, for all of us.

"Shut the door!", she will announce on a regular basis, as anyone enters the kitchen and fails to close the door behind them fast enough.  Sure, we can cope with this, for a bit, but as with anything that never stops, like the screaming cat when you are trying to get to sleep, the dripping tap, the angle grinder next door, it pokes a hole in your skull and tap-tap-tap constantly without mercy, until your brain rebels, and despite all restraint you have so admirably attempted to display, eventually it is all too much and you can't deal with it any more.  We live on this knife-edge throughout the day-before-school.  Each of us deals with it differently.  Amy (my wife) will try to ignore it most of the time, with the occasional rebuke "Just stop now Lucy", Chris (my son) will disregard Lucy's wishes most of the time, and leave it open in defiance (he is a teenager), but then suffer the repercussions as Lucy will grill and admonish him repeatedly afterwards.  I try to comply with the shut-door policy.  As a man I find it much more preferable to play along to avoid the noise of rebuke.  I like my peace, especially at weekends.  However, when I get told off for not closing the door whilst going through it, I feel trapped and see no way out but to plead for some reasonableness.  I forget that "reasonable" is not a word in Lucy's limited vocabulary.  So I, too, will fail to shrug it off.  It just results in all of us being made more grumpy, feel maltreated and be generally annoyed about the whole thing. We live on a knife-edge of emotions.  It all fuels the flames of desperation.  And this door thing is not the only way we tap keeps dripping on our psyches.

There is more, much more, about the pain, frustration, struggle and tears we experience living with autism, we even have the odd joy (believe it or not), and I will try to write about those too.  We are also at an important stage in Lucy's life.  The next few weeks will determine whether our local authority will provide her with funding to go to the Pearson Riding College - where she has already been offered a place, but which needs paying for.  It would set her up over the next three years to become more independent, learn to deal with her autism, learn some social skills and ways of dealing with social situations, and all within the environment of horses, which she has always felt comfortable with.  She would also gain a qualification and become employable, doing something she is able to and wants to do. We are entering the battle of all battles with our Local Authority, to ensure Lucy gets the support she needs and which will mean she does not end up for the rest of her life on state benefits.  This is Lucy's chance to do something with her life, cope with her autism, and our big hope as a family to avoid a life sentence of misery.

Welcome to our world.