Love is…

So. Here we are, another milestone to note. Today is the 4th anniversary of the day that my world was torn apart. Friday 13th August 2010, G was admitted to an adult ATU, aged just 16, just under 2 hours drive away.

I wanted to write something, but have really struggled with what. There are so many cases of families going through similar circumstances at the moment – Claire Dyer and her family for one – that going over what happened to us seems kind of moot.

There is a growing awareness that this is not acceptable, that a family torn apart for the convenience of the system is both unnecessary and harmful. The #LBBill movement has evolved from the sense of outrage that so many of us feel at the current situation and is working towards enshrining in English law the right of the individual to live in a place of their choosing as a default. If ‘the authorities’ wish to infringe this right, they must justify their decision to a judge in a court of law. And ask permission to do so. This will hopefully reduce the number of vulnerable people being moved hundreds of miles away from everything and everyone they know and love. I’m very proud to be involved in whatever way I can.

Which brings me round to the subject of this post. There are some excellent discussions taking place on Twitter and the Facebook page for #LBBill around the legal aspects of the Bill, the affects it will have and the importance of advocacy and self-advocacy. All exactly what we need to discuss if we are going to put this into a Private Member’s Bill.

But what about why we are doing this?
Why do we insist on challenging the status quo?
Why do we ask for help from a system we know to be brutal?

Catherine Dyer’s posts about Claire on Facebook have reminded me of how I felt at the time, and how life-changing the decisions other people made were. Not just for my son, but for the whole family.

I am reminded of the situation many years ago for young, unmarried mothers. Those who were hidden away in institutions until they gave birth and whose children were then taken away for adoption. Utterly devastating for those poor girls. Decisions were made by ‘the authorities’, supposedly in the best interests of the children. We can look back now and wonder at the cruelty, at the lives completely changed and the powerlessness of the young mothers. I know that not all mothers (or fathers) are angels, but the default has changed in the years since to an assumption that children are better off with their parents, unless ‘the authorities’ can prove otherwise.

I sincerely hope that the same process of change will happen as a result of the #LBBill campaign and that we will one day look back at the assumption of control by the State over vulnerable adults with the same repulsion.

So, why are children now assumed to be better off with their parents?

Because we are the family, always there for them, cherishing and nourishing them.
Because we would do anything for them.
Because we love them in a way no one else can.

Why shouldn’t that apply to the families of vulnerable adults? Whatever happened to the value of family love? It doesn’t just stop on the day you turn 18!

Four years ago today, my life was changed forever by a decision I had absolutely no control over. We were brutalised by a system that needs to change.

George, I love you just as much today as I did the day you were born, and all the days between and into whatever future lies in store.

For you and all the other dudes and dudettes, I will keep fighting the good fight.

So sad.

A few days ago I posted on social media about a milestone I’d reached – 2 years since my learning disabled, autistic son was discharged from a psychiatric Assessment and Treatment unit. It was not the place I wanted him to be in, but he went there anyway.

The main reason I objected to his admittance was my perception of psychiatric units, borne out by some of the conversations I had with various professionals, some of whom warned that ‘there are places out there you wouldn’t want him to go to’, whilst they were reassuring me that they were finding the best place for him. This was pre-Winterbourne, and in fact I watched the Panorama program, then went to visit him in the unit the next day.

He did make good progress while he was on the unit, and the people working there have my respect and admiration – I know first hand how challenging his behaviour was and as I spent time on the ward, saw how patients were treated and engaged and how the NHS spent a small fortune on the physical upkeep of the place.

What a pity then that this particular unit was closed as being ‘financially nonviable’ and the expertise of the staff team lost as they were redeployed and all went their separate ways.

Even more poignant when today I find that those ‘places out there you wouldn’t want him to go to’, still exist, are still allowed to exist, and lives are still being destroyed because of them. So sad to read the torment felt by LB’s mother – it could so easily have been me.

http://mydaftlife.wordpress.com/2013/11/27/cqc-selected-highlowlights/

Hello World!

I am a complete novice when it comes to blogging, so this is a whole new experience for me. I hope to be able to share some of the good stuff that happens as well as the not so good – being an active parent of 2 boys on the autistic spectrum can be both incredibly frustrating and exhilarating. Nothing is ever straightforward, simple, or just happens and it can feel like a never ending battle.

So hello world.