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.