Monday, 28 July 2008

Our reality

If I had a pound for every time I heard someone say ‘if he were my son I would give him a good spanking’ or ‘if he were mine I wouldn’t take him out in public’ etc etc - I would be a rich woman. Not one day has gone by when I have taken C out that I do not hear at least one derogatory hurtful remark about my beautiful son. So sadly I think Michael Savages’ recent thoughtless comments on autism represents a proportion of societies views about our children.

Wasnt C cute!
And here's C when happy now;
video
When i see C this happy my heart sings. But others find this large display of pure joy disturbing embarrassing and even frightening. We have emptied countless cafes, shops, or even been asked to leave.

When C was diagnosed all those years ago many friends disappeared as they didn't know what to say or how to relate to C. Some didn't want their child 'catching' autism. Our world shrank as people kept away. Only recently C and i met up with someone we had known many years ago. We had a coffee - she went to the loo -and never came back.

You get used to living on 4 hours sleep, cleaning poo off the ceiling, trying to find something C may eat. You get over wondering what his voice would sound like if he ever spoke. And there will always be another funding battle to fight.

A new way of life emerges and becomes the norm.
Other things take priority, the superficial, artificial and materialistic things are just that, they are things.
C gives me so much more. A smile, a look, a delighted squeak. A licked clean plate (on those rare occasions). A licked clean train carriage window is more often.
Our odyssey has not been easy. There have even times been times when I thought he was going to die. All the comfort I was given by doctors, was ‘wouldn't he be better off dead’.
Society judge him, make fun of him, they film him on their mobiles. C has had dog biscuits thrown at him in the street, and once was even punched by a passer by. Some of my family are embarrassed by him, some say they are scared of him others pity me and give C no second thought.
They don’t see the beautiful being that he is, or the gifts that he shares. They don’t see that C is happy and does have a quality of life. They cant get their heads round it, or rather they don’t want to or even try.
Living with disability can be tough at times, but you get there. It is also full of much love, joy and laughter. And i wouldn't have it any other way.

It’s the prejudice I find the hardest part. The attitudes of some family and friends and some professionals whom we are supposed to trust. And the strangers in the street.

And that is on going. This is our reality. C by the very nature of his autism and challenging behaviour is isolated and in turn isolates me as his mother. This is also true of many other carers in many different situations. There are 6 million of us in the UK. 175,00 are under 18 years old. Carers save the country £87 billion a year!!! (But C and i have just put a dent in that!)

So I have been overwhelmed here in blog land that C and I have touched so many people. Especially as many of you are not parents of autistic children. Everyday there is a new comment or email spurring me on at this difficult and emotional time for both C and I.

And i have been bestowed this beautiful Arte y Pico award by Exmoorjane, Mrs C , The dotterel and Jeff Deutsch. Thank you all so much.
I would like to pass this award on to bloggers (I'm sure you all know the rules) who have also been through transitions.

First Deb who's journey when her daughter went into a group home i followed in floods of tears. And has helped me so much to know she is now settled and happy.
Honeysuckle who's was the first transition blog i found.
Cheri who is now discovering herself after her children left home.
e with her lovely blog who is about to go through a transition has reminded me that all mothers go through this.
KC's blog. The whole family deserve many awards as they support each other through a difficult time.
And Baking a wish, a blog i only recently found is filled with so much love.
And as for C settling in to his new home from home. Progress is slow, and as yet I cant see the light at the end of the tunnel.
But we are on track! :)

Monday, 14 July 2008

C's world

C's world changes today. Everything and everyone he knows will change. My blond blue eyed little boy of mass destruction has grown into a handsome young man, is leaving school and moving into a home entering the adult university of life.


(You can click on the word cloud to create your own)
It amazes me where all the years have gone. My tiny little bundle of joy now towers over me. I had no clue when he was young what his future would hold. The old mental asylums were still open then, and have now thankfully mostly closed. Even our local day centre is closing and services are becoming more modernised.

There is a lot more choice now for homes for autistic adults because of The White Paper, Valuing People: A New Strategy for Learning Disability for the 21st Century. It is the first White Paper on learning disability for thirty years and sets out an 'ambitious and challenging programme of action for improving services.' Its about individual’s wishes, choices, rights and goals. (about time to!!) And I and other parents will hold them to it but it can still be a post-code lottery.
After all we may all end up in some sort of home one day.
Since the White Paper ive seen a mother get a council house for her son and use Direct Payments to fund staff to go in.
I’ve seen a group of parents get together and buy a house for their children who know each other so they can stay together with their peer group.
I’ve seen a house built from scratch to accommodate a persons specific needs.
I’ve seen individual flats, small homes and larger more specialist homes (as I have chosen for C)

There is more choice and I hope these choices continue to grow as autistic people are listened to more, and awareness grows. Care standards are much higher and homes are inspected regularly. The Government have also listened to the NAS and their I Exist campaign. But there is still much to be done and improved upon.

I found this poem written by Wendy Lawson which she gave me permission to use.

Change, change and more change,
Of context, place and time.
Why is it that life's transient stage,
Plays havoc with my mind?
You said,"We'll go to McDonald's"
But this was just a thought.
I was set for hours,
But the plan then came to naught.
My tears and confused frustration,
At plans that do not appear,
Are painful beyond recognition,
And push me deeper into fear.
How can life be so determined?
How can change be so complete?
With continuity there is no end
Security and trust are sweet.
So, who said that change would not hurt me?
Who said my 'being' could not be safe?
Change said,"You need continuity"
In order to find your place.
For change makes all things different, They no longer are the same.
What was it that you really meant?

All I feel is the pain.

It is hard to tell how much C understands. He became more distressed with each visit to the new home (but at least they have seen his head banging and how I handle him) Two staff from school will be staying over night with him tonight.

So as C moves and his anxiety takes over for the next few months, the only control he can exert in his new world are his bodily functions (in and out) and his head banging. I just hope his helmet does its job and he finds peace and trust soon. I hope it doesn't take C to long for him to train his staff! He certainly trained me well!

I don't know when i will see C next, i am being given conflicting advice how long i should leave him before i see him, so i will just play it by ear and go with my gut feelings.