Saturday, March 17, 2012

ACC Background

Heres the blog post I've been planning for all week! Lets start from the beginning.

My mom has struggled with diabetes most of her life and one of the causes of ACC seems to be that a metabolic disorder runs in the family. When she was pregnant with me she had gestational diabetes. When I was born I was a big baby- 10 pounds 14 ounces and 21 inches long.

As a baby when learning to crawl I crawled backwards. I crawled many places like this...and even got stuck under a few couches in my day. (yes we have pictures to prove it.) I didnt learn to walk until I was 14 months old which is considered a developmental delay. Talking though? Talking happened when I was 4 months old. My first words were "I love you" I haven't stopped talking much since either ;)

As time went on my parents noticed that my balance when walking was...not good. When I would walk my right foot turned in a LOT. So my parents- both having worked with special needs (my dad with special needs adults and my mom with special needs kids as a teacher) started having me walk up and down the stairs in our home watching my feet until I stopped turning my foot in! I still turn my foot in when I'm tired or stressed but for the most part I do not do that anymore. I've also had knee problems in my right knee due to that issue I had with walking.

When it came time to learn how to ride a bike I couldn't do it. My balance was ridiculous so after a neighbor boy, my older nephew, and my parents all tried to teach me and I couldn't learn I just never did.

Tying my shoes was another issue. I couldnt learn the "proper" way so my mom had to teach me the much simpler way and my shoes do not stay tied. Slip on or Velcro shoes are my best friends in this department.

In elementary school my parents moved me to a school closer to where my mom taught, due to the fact that I was getting bullied. When I moved the school system said that they wanted to hold me back a year but my parents and I all agreed that wasn't an option. But my mom asked them to test me for special needs. However because my mom was a teacher in that system, and because I seemed "so smart" they wouldnt do it. Instead they tested me for Gifted class and I was put in the gifted and talented program for 4 years. This I truly believe helped me in the long run. If I'd have been babied and in special needs courses I'm not sure I'd have been able to function like I am. Special needs programs are important and in some ways I would have benefited from them but since I wasnt "qualified" and I got in gifted class I'm glad it was something.

I was the awkward kid that everyone thought was weird. In middle school people liked me because my mom was a teacher in the school. I did have a few close friends but thats it. Then in High school I switched districts and I still never fit in. I had friends in the popular group but I didnt miss the glares from most of the people in school. I still had a few close friends and I treasure them to this day. But school was tough because I just didnt know how to act and react when it came to being around people. So people talked mean about me and I was made fun of and bullied. Even some by my best friends. Then I went on home school and thats when I learned a lot about myself and that helped me to cope more with being the awkward teen.

Finally my freshman year in college (at the end of it) I found out about my ACC. Heres how that happened. I was home on break and mom and I had to go to the local hospital about something. We walked by a Neurologists office but then mom stopped and went back. She looked at me and said "I'm getting you an appointment. There is something wrong and we need to find out what it is." A couple of months later after a few tests including an MRI we found out about my ACC. I went through even more IQ tests and a lot more a few months later to find out where exactly I was with my ACC. I was told I'd never make it through college, that I should give up. Some of my family even came to these appointments with my mom and I and actually told one of my doctors that they whole family has always thought I was weird. I was discouraged and felt quite unloved by everyone except my mother who stuck by me the whole time realizing so much about my childhood. She learned right along with me and now she's my best friend as well as my mother and at this point there are only about 3 or 4 people that know how to work with me about my ACC.

My freshman year was still awkward. Everyone called me a drama queen because if I got mad at something I would just walk away- and as a naturally fast walker I walk even faster when I'm angry. So they saw it as me being dramatic when really I was just trying to keep from saying something I'd regret later. Most of my friends- though they are some of the best friends I've ever had in my life- didn't understand me. They were not very nice and since I was still (even years later) grieving over the loss of my father things were not going well. Then I started grieving over my diagnosis...

Finally my 2nd year of college things were looking up. I was learning more about myself and coping with my ACC. I learned how to overcome several obstacles and decided that instead of asking "Why me?" about my ACC I wanted to make a different.

Most of you know- I'm a Christian. I love God with all of my heart and I prayed several times that He heal me of my ACC- because if anyone could slip a corpus callosum in my brain after 20 years of not having one I knew He could. But then I began to see the bigger picture. I know that God laid that on my heart. From that moment on I knew that I wanted to help others with ACC. I started an organization called ACCAA, (which has since stopped but I'm still spreading ACC Awareness.) I was able to be there for parents of ACCers and ACCers themselves and give them hope because I was an ACCer in college after years of people telling me I'd never making it I was in the process of proving them wrong and I did it all while learning and coping with my ACC. I know that I couldn't have done it without God. I'm thankful for every path he's put me on.

I'm so thankful that I can be there for others with ACC and that they can be there for me when I need them. I finally have a group of people that understands me and I wouldnt be able to live my life without them.

Each year is a new year. In May of 2010 I became a college graduate with a Bachelors degree in youth ministry. I'm now allowed to drive again, and after people telling me I would never find a job, I have one and have another job in the works! I'm still trying every day to live my life as normally as possibly. I'm not gonna sugar coat things. Every day IS still a struggle but I try to keep an open mind. Every day I'm scared that something bad might happen- that I'll forget where I'm at a bad moment... or that I'll get a migraine one day when I drive myself to work (I'm not supposed to drive with a migraine) Every single day I have to be so careful I'm constantly walking on egg shells about my life. I'm being honest about this on a blog because if you are reading this then chances are you should know about the good and bad parts of ACC and I can tell you about mine.

Instead of living in fear and doing nothing I beat my fears head on. Sometimes I feel alone doing it but I know I'm not. Theres not much else I can tell you that I haven't already but if you have any questions feel free to ask!

Speaking to anyone that has people telling them they can't do something because of something else... YOU CAN! Keep your head up high and just keep going for your goals. Have a plan and JUST DO IT!

People with Brain disorders and diseases- you are not alone. You can make it through. Do not give up. Just keep on going. We can make it through this together. Feel free to e-mail me I'm here for any of you that need someone to talk to!

Thank you so much for reading my blog this week and I hope you learned something new about ACC and even possibly about me. I can't speak for everyone with ACC but I can share my personal story and thats what I'll do. I'll also do my best to help bring out the stories of others with ACC as much as I can. I'm not the only one with ACC and others deserve to be heard as well! :)

I'm in no way bragging about anything in this post but I'm instead sharing my story with you in hopes that it is an encouragement to you. So thanks for reading. Thank you for joining me during this years Brain Awareness week!


joakabridgefreak said...

thank you for this post. Mothers and god are wonderful aren't they? And the two who truely understand us. I can never repay my mother for all she's done for me and raising me to be as indipendant as I can( and still is). I feel God, knows way more then any doctor knows because When I was a toddler, I too lagged behind and rolled instead of crawled. Doctors told my mother I would be "retarded" ( please excuse me, I don't care much for this word). mother refused to accept that diagnosis and even to this day I trust her intuition of things and pray daily for the strenght to keep fighting.

April potts said...

So much to take in but all great to know! I am still grasping at straws to understand who I am and how it's different. I wish I would have known many years ago