Sunday, July 27, 2008

Living with ACC- Charlottes story

Here is the story of living with ACC from my friend Charlotte. This is straight from her myspace post. All her words. Hopefully seeing through the eyes of someone else with ACC will further the understand of you as the reader. It opened even my eyes.

I was first aware that I was different when doctors came round to assess me when I was little; I had to do things like shape sorting and walking, etc.
It was all part of research into what they now call Agenesis of the corpus callosum.
This disability is hereditary as my mother, brother and a great uncle also have the condition.
When I was little I had special boots made because of my balance and I couldn’t walk properly. I still have problems with my balance and when I walk my left foot goes outwards. I also have poor motor co-ordination which makes things like crossing roads difficult and I often misjudge things like a door for a wall and because I have high pain tolerance I am likely to collapse when I fall - to let my body recover from the shock.
I also have problems in understanding and the behavioural pattern in when is said and done as I can only see things in black and white, simple, which sometimes causes problems and then I tend to forgive and forget straight away without realising that the other person needs time and space to cool off. But in these situations I feel alone and I either I annoy the other person further or for the better seek comfort in a favourite teddy (Jet, my toy cat), or do something else like writing. If not I tend to lose it and do something I would later regret.
Problem solving and decision making has always been a problem as I get confused by the multiple options given and not know what to do or say.
I spent my first seven years in a special school as wasn’t bright or clever enough for a mainstream school and I was a lot slower than most children of my age. School wasn’t all that bad and I got on with a other children with disabilities, although I made few friends I was very much a loner because I didn’t have the social skills to communicate with the others and I always felt left out because I was different.
Then when I was about 12 or 13 I went to a mainstream school which I hated as I was bullied all the time and where I came from it made life very hard and I soon became depressive and suicidal and coping with ACC was difficult and I used to disown it and try to be someone else.
I would have preferred home private schooling though as my parents were also on disability benefit we couldn’t afford it. So instead I got myself into books and encyclopaedias that have a wide range of information and taught myself.
After I left school, I went to college to further my education, and I went on to do GCSE art. Which I liked.
Though because money was tight and I was old enough to pay my way I had to leave to find a job and with so much discrimination out there I knew I was in for a tough ride and I had depression all over again and to make matters worse no one knew about the extent of my disability as it was rare.
Then my luck came when we moved to Winchester and I got my first job, cleaning in an army barracks, though the joy soon turned sour when I realised that I was being used, so in the end I was just there for my parents.
That is where I met my now husband, he backed me up from the start and made everything easier, then we fell in love, and moved in together, though the shit weren’t going to stop there and we got conned and thrown out my our land lady and had to rebuild our lives again.
It’s tough coping with ACC and I’ve had to learn to tolerate other people and control myself and how to do simple things like love, sex and relationships and everything in adult life.
We got married in March 2007 and things are looking up for us and I’ve comes to terms with and accepted my disability
With Family, friends and a wonderful husband (who is also my carer) around I find life a lot easier to cope with.

There you have it. Well come back a little later and hopefully we'll have blogs from others that know what it's like to be around those with ACC. God Bless

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