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

Wednesday, July 23, 2008

ACC and Me part 2

Hey everyone-
Sorry it's taken so long to get back to this! Soon there should be more blogs. But hopefully they will be from other people so that you dont have to put up with much more of me. Until then I'm going to share the 2nd and final blog of the "ACC and Me" series by...ME!

Basically all I really wanted to share this time was the difficulty of living day by day with ACC of my level. I get lost easily. I cant ride a bike. to tie my shoe is a pain because it just comes untied quickly again. Learning is like this: In one ear and out the other. Though I wish it wasnt...I like to learn...I wish I were better at it (haha)

I get easily frustrated with myself and the fact that I cant focus on certain things. Theres not one thing that I'm just great at. I tried doesnt stick well, tried other instruments and sometimes Its like I have relearn every time I pick the instrument up. I get so tired so easily and Migraines are my best friends. By this I'm saying I hate them but they are always there for me...

Dont get me wrong I'm not complaining. Life isnt bad it's just hard, but isnt it hard for everyone in different ways? Living life to the fullest is my way of overcoming my ACC. I am a Christian. I believe that Christ watches over me and helps me through each day, and I've felt His presence. when I've gotten lost theres always someone with me that will help me... people make fun of me because I cant ride a bike but its okay. I know what I can and cant do and I work with what I can work with.

ACC is very frustrating, its one of those things I wish I could beat...and I can just learning to cope with it, but not hide that I have it (like I wanted to do for so long...) is a form of me beating this. Making sure that people are aware of the ACC is a form of beating this! And I just feel so blessed to be given this opertunity.

Sorry that this isnt much. Join in next time for another blog with someone else about ACC! :) God Bless

Friday, July 11, 2008

ACC and Me

Hey again-

Well today I just wanted to touch on ACC on a personal level. I've been thinking a lot about how my ACC has been a battle and struggle for me personally, and for those that I know love and care for me.

I'm a very straight forward person. I like to plan, and It doesnt make me very happy when I've been planning something for a while and it just falls apart. I get moody and withdraw from people.

My ACC isnt as bad as some. I have difficulty walking well, I'm clumsy and I get lost so easy. Its a scary thing. A lot of the time I feel I am a burden on those that I care for. And then theres other people who always think I'm lying about my ACC because I'm "normal" and that in itself really hurts me because seriously why on earth would I make up a brain problem? Anyone thats known me since I was a kid that besides my heart, my brain is something I never wanted to doctors to have to look at and deal with when it came to me.

Then two years ago I felt like my world came crashing down, sure ACC isnt terminal...but its still there...well actually the point is that the CC is NOT there. Anyway my point is it's been tough. I practically live with migraines and I have to be careful not to hit my head. However I hit it, almost every day because I'm so clumsy.

Well this is the end of the first installment of ACC and Me. I'll talk about it more later!

Thursday, July 10, 2008

ACC and Us

Hey everyone. I'm Lynnea. and I have ACC *hears a chorus of "Hi Lynnea's"*

ACC is a brain disorder called Agenesis of the Corpus Callosum. Many are born with it though it is coinsidered rare. Everyone with ACC is different. Some are of normal intellegence while others have more difficulty. There are some that cant walk, or talk, or that struggle with seizures. And there are types called partial or complete ACC.

I have complete ACC. It means that the middle part of the brain...the Corpus Callosum, that connects the two sides and sends messages is actually missing or partially missing. Some people with ACC find out young, while others find out when they are much older. I personally found out at age 20 and am now 22. ACC is a struggle for those with it as well as the families and friends of those people.

More people should know about this disorder because there are so many that dont understand it or accept it. And that's what I'm here for. So if there are any questions or any of you out there have it or know someone with it let me know! Let the ACC awareness begin.