Friday, December 26, 2008

Happy HOLYdays and my school and ACC

Hey everyone....

I'm SO sorry I've not done any blogs for this page....I feel like such a slacker though I will tell you I've been trying to get others to do some entries for this...and no one has been able to take time to do that. Lives are busy but hopefully at least I'll be able to do better with his.

I hope everyones Christmas was AMAZING and that the New year brings amazing blessings to each of you.

My schooling this past semester took a lot out of me. But it was great, I tried my hardest I did all my work and stayed up on everything and actually passed with 2 B's 2 C's and 1 A!

Next semester I have Ethics, Death and Dying, Math, and 2 youth ministry classes so I only hope I do as well or better than I did this semester...After next semester I'll have 2 semesters left!!! I CANT WAIT....

Hope this wasnt too boring God Bless

oh and on myspace add us

Wednesday, September 17, 2008

ACC Story:Sandie and her son Matthew. Focus on the Positive.

This blog was written by a parent of a young boy that has ACC. He is non-verbal and I can already tell you through her e-mails that this boy is amazing. Sandie and I have become good friends. She's a wonderful encourager and a blessing to my life personally. So go on, read her and matthews story! Also Matthew has a success story on the ACCA website so you are welcome to look that up.

And when your done check out her very wonderful website:

Then go look at the success stories to learn a bit more about Matthew:

God Bless
__________________Sandies blog entry starts here._______________________

I don’t have agenesis of the corpus callosum myself. I am the parent of a boy who is almost 15 years old in a few weeks. His name is Matthew and he loves to laugh, he has a wonderfully silly sense of humor and when he laughs he can make others in the room laugh right along with him. His happy smiley silly giggles throughout the day brighten my day and he just keeps this beautiful approach to life each and every day despite the many challenges and struggles he deals with as a result of being born with agenesis of the corpus callosum (ACC).

Matthew is globally delayed and he functions at about the two year old level when tested. But, he continues to learn and make progress all the time. In the beginning years it took him what seemed like eons to learn one thing and that skill didn’t come without therapy…LOTS of therapy…LOTS of repetition and just when I was about to, at times, give up and question if he would learn the skill…it clicked for Matthew and in the snap of fingers he learned what he had worked and worked AND WORKED on. A connection was made and he learned a new skill. All that hard work, all that therapy, all that practice, all that repetition was not wasted…not one little bit. It’s what Matthew needed and it made it all worth it. Matthew learned to crawl when he was about 2 ½ years old but in the beginning he would crawl backwards. Soon he did begin crawling forwards but it was so hard for him due to his low tone and motor planning so he would crawl slowly with his head looking down at the floor. I loved seeing him crawl but I would also cringe because if I didn’t watch him closely he could bump right into the wall or whatever was in his way since he wasn’t able to crawl AND look where he was going at the same time. Eventually he did gain strength and was able to crawl while looking. He sat up by himself when he was 11 months old but he still preferred to slouch and lean against something for support or lean against someone because it was a lot of work for him.

When Matthew entered grade school I saw a difference with the learning coming a little more quickly. It didn’t always take so much time for him to learn something new. At this time he was not walking independently but he would use a walker and needed close supervision. He struggles (even to this day) with balance issues. He has trouble with stairs, struggles with depth perception, doesn’t ride a two wheel bike but he can ride a trike and loves it! J He defied all textbook odds when I picked him up from school one day and when we got outside he let go of my hand and took his first independent steps! I was amazed at what he accomplished and couldn’t believe my eyes…my seven-year-old boy was WALKING! :)

It isn’t always easy to focus on the positive when there are sometimes so many struggles and challenges but it IS so important and very worthwhile. I encourage you to close your eyes at the end of each day and see that positive picture in your mind of something your child did, learned, accomplished and CAN do no matter how small and give thanks to God.

~Sandie *Mom to almost 15 year old Matthew with complete ACC*

Monday, September 8, 2008

Lynnea: ACC and School

Hey there from Ohio! Well as of now I'm starting my second week of school tomorrow. Just had my first monday class today. School is going to be tough this semester. But I'm excited.

If you know me you've heard me talk about how hard it is to be in school with ACC. I'm in my 4th year of college and it hasnt gotten any easier but I've learned so much. Not just in school but about myself. I've learned that since I go to a private university it's hard to get the accomodations I need. I dont really get much respect in school either. People just dont get that I have a problem and need help. They think I'm exagerating. Some have even said I'm LYING about my ACC. Now why on earth would I make up a brain problem just so people could make jokes about me missing part of my brain?

I'm getting off topic. So far it seems as though while this will be a tough semester it will be my best semester yet! My professors seem very understanding and I'm going to be working my but off. I'm doing my best to stay up on my reading. And so are I'm doing well. I'll keep small updates about school and maybe sometime we'll hear from some parents of kids in school. If you ever want to be an addition to this blog let me know! I'm sure the readers would love to hear from more than me! God Bless

Thursday, August 21, 2008

Website for ACC Awareness

Hey all ACC Awareness has also started calling ourselves ACCA or Acca. Also in other news My mom is trying to get word out about the website that I made. She keeps sending people the blog that as of now doesnt link to the site, but the site links to it. From now on at the end of each post I'm going to do a shameless plug for the site by making it my signature. Once I get back to school be expecting more blogs from our supporters as well as blogs from me about School and ACC. (I will try to minimize the venting) Also I've been gaining many more friends with ACC and will hopefully be asking them to write something for this blog!!!!

Thanks so much for your patience and willingness to read! God Bless

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.