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.

Saturday, 12 March 2011

The woman on the pier

Just after Emily was diagnosed with autism and learning difficulties we took a day trip to the sea side. Llandudno to be exact.

It was a beautiful day and Emily had always loved the sea so aside from the usual stop because of Liz being travel sick things had gone well.

The diagnosis was still very raw. Phil had retreated into work to help him through and I was spending every minute scanning the internet for causes, treatments, therapies and trying to dodge the usual ‘cure” sites.

We headed to the pier because of the many autism friendly attractions. Lights, sounds, repetitive machines and rides.

Emily was ok but after many many turns feeding money into the fruit machine we drew the line and the predictable meltdown happened.

She was three and the full throttle screaming kicking and rolling on the floor drew many stares and comments. One woman in particular watched rather than stared though and as I tried to comfort Emily as Phil distracted an embarrassed Lizzy. She waited.

Eventually Emily was calm enough to bring back with a packet of Quavers and we put her on a ride with her sister.

The woman walked over. I smiled and offered my usual(in those days) apology.

“Don’t worry’ she said. “it’s autism isn’t it?”.  Surprised I said yes it was and explained that Emily was just diagnosed.

“I recognised it straight away” she said “Mine’s grown up now but he was the same”

I was so pleased she was the first parent I had met since the diagnosis and I felt such a surge of relief.

“It’s not easy is it “I said.

“Not very no. wait till she  asks you what’s wrong with her and why she’s not like everyone else. That’s when it’s really tough. Mine pushed me down the stairs”

I didn’t know what to say. She didn’t say anything either so we just stood together in silence and watched Emily on the ride still sniffing a little from the meltdown.

 I looked at Lizzy at 6 fiercely bright and independent and 5 years away from her own diagnosis of Asperger’s Syndrome.

Then the woman smiled and walked away.

Over the years I’ve thought about that woman from time to time. Mainly in those early years in terms of making sure I never treat a parent of a newly diagnosed child in an insensitive way, as it felt at the time. Mainly as Emily has grown bigger and stronger, if the day might come when the violence becomes to much to bear. 

 As I write this I’m nursing a shoulder still painful from being repeatedly and unexpectedly punched this afternoon.  A meltdown so prolonged and frightening that we have had to access an emergency bed for the second time in a month.

We are lucky we still have respite available.

 It doesn’t take away the heart punching pain I feel at being unable to reach her and take her pain away. It doesn’t lessen my fear of what this world can and does do to disabled people like Emily when vulnerability makes them easy prey.

But it offers a time to recharge our batteries and attempt to disperse a little adrenalin.

It’s not her fault it’s just another phase of the spectrum.  She doesn’t want to act this way any more than we want her too. The battle that rages still within Emily’s brain, that dictates her actions is fuelled by fears of unknown cause.

It flashes so quickly now that there isn’t always a logical path to it’s genesis. No discernable trigger. When she punched me in the back this afternoon she hadn’t even seemed angry.

If she had, then standing so close to the top of the stairs as I was, I wouldn’t have turned away.

Tonight the woman on the pier is front and centre of my thinking.  

Friday, 11 March 2011

For the love of Gary

Janis Sharp the fierce and wonderful mother of Gary McKinnon demonstrates how a mother's love should be an inspiration to everyone.
Gary is facing extradition after his Asperger’s Syndrome prompted a spectacular and for the US highly embarrassing hacking into their computer systems thereby highlighting a flaw in their firewall. Janis is fighting everyday to make sure the world stays aware of the case.
He did no harm, and hurt no one except perhaps the career prospects of the person who assured everyone their system was safe
I personally would have thanked him but the American authorities have gone another way and this vulnerable, seemingly harmless man is now facing extradition to a future in maximum-security prison.
The fact the our government seem to be allowing this speaks volumes about our relationship with our bigger cousins across the pond,
Clearly criminal activity can’t be condoned however shouldn’t humanity dictate Gary should face trial in his own country? I’m sure any disability equality impact assessment would say it should. 
It should also be stated that there are many in the US who disagree with their decision makers treatment of Gary and are concerned by this extreme and disproportionate response.
At the moment it feels that if the world was a school playground, the British Government is the kid holding the coat of the bully while he punches Gary in the face.
It also highlights the gaping gap in society’s knowledge of hidden disability.
Not all disabled people use a wheel chair or cane. Not all disabled people have the social skills to determine the difference between a mate and a predator.
Not all disabled people have the physical ability to show restraint when their obsessions are set to maximum. That is a major component of Asperger’s Syndrome and requires protection not punishment.
The final irony lies in the disproportionate weighting of the judicial scales.
Disabled people who are victims of crime often see their tormentors unpunished, even if that results in death, however Gary a disabled perpetrator of crime, sees the full weight of expensive legal fury unleashed.
To Gary and Janis I send my love and support. To all governments involved in this case I send a plea to apply common sense.
They could be anyone of us who are, or who love someone, with a disability.