Wednesday, 16 March 2011

The Day Today

Today I slept in for longer than I have for a while. It’s very quiet here. On Sunday after two more violent days Emily went in for Emergency respite.

The autism and learning difficulties and epilepsy  have over the last few months been joined with a new factor. Aggression.

Emily has always been a gentle child. Much keener on praise than censure I’ve used many behavioural modification techniques. I call them being a mother but apparently that’s what they are.

Reward charts and praise and lots of love seem the most obvious choice to me.
When you have limited language and the world is, on it’s best day, a strange and confusing place- then punishment for transgression of social rules you don’t understand seems a cruel rule.

I believe in the rights of everyone not just those who fit a mould they had no part in creating. I believe too that as my children’s advocates then my responsibility is clear.

Yet  I’m now at the cliff edge. Because the violence that inhabits our evenings and weekends here ,that has become increasingly difficult over the last few months is now dangerous.

I hadn’t effectively communicated how bad things were here. To be honest I’m not built that way. I’m not saying that this was some misguided attempt at bravery I’m just stating a fact.

When you are the target you tend to believe that you must be the problem. The catalyst for the explosion.

As these behaviours don’t manifest anywhere else then you can understand why this is the conclusion I draw.

Our home is run to the needs of Emily.I try to facilitate calm and peace. This has led to a massive restriction in our activities and behaviours in an attempt to make things right for her.

Autism manifested seemingly from nowhere. It stole my seemingly neurotypical children from me and gave us a world which offers sneering disinterest at best and bullying and blame at worst.

Social services facilitated respite. This began seven years ago and has proved a lifeline. We will not live forever and what will happen to Emily then if she has only ever known this house and her parents as carers.

Hers is a life which will always be lived to the agenda of others.

I am responsible for all of Emily’s personal care needs. I wash and dress her try to interpret her needs, wishes and hopes and manage her daily life. I don’t sleep much and haven’t since she was born. Her epilepsy resurfaced whilst she was in respite and led to a 6 minute respiratory seizure . That must also be managed.

Then the punching, chair throwing door slamming and screaming starts.

I’ve sobbed through three meetings recently the net result of which as Emily is only attacking me has been an offer of behavioural management. I’m afraid we’re beyond reward charts and stickers.

The girls have no friends and to be honest neither do we. We’re none of us here at the  top of anyone’s Party list. Who can blame them eh?

Between my Mum who is dying from Alzheimer’s, Liz’s Asperger’s syndrome and Emmy’s needs- I tend not to have much common ground with a lot of the people I know.

The friends I do have I value beyond measure and if you show empathy and kindness to me or mine I will never forget you.

Tomorrow I’m entering a room where we will discuss Emily’s future. If you’re a fly on the wall you will know who I am.

I'll be the only the only one present without a budget to manage.