Saturday, December 8, 2012

Don't let anyone tell you- you can't do something!

Since finding out about my ACC I've been told I can't do many things in life.

I was told I couldn't graduate college- did it.

There is much more than that but I'm not going to make a huge list. The point is, if you put your mind to it I know you can do it- because I've done it.

Right now I'm struggling with the Job thing- trying to find a good job, trying to get do a lot of things really and people keep saying "you can't" Join with me fellow ACCers and Parent's as we prove the world wrong! :)

Friday, November 9, 2012

Jobs and ACC

When I was in college I posted more than one blog post about my time in school with ACC. Now that I'm older and a college graduate I've entered a new part of life. I'm ready to join the working world. A year ago I had a job. A job that helped me grow so much as a person and as an ACCer in general. Due to a few things I had to step down from my job. I'm now back at square one- looking for a job.

As an ACCer there are a few things that effect me in the work force. I have to avoid stress as much as possible. Stress triggers a lot of my ACC characteristics, my anxiety, my OCD, ADD, and autistic tendencies, it triggers blackouts and extreme clumsiness. Stress effects every part of my life to the point that I do not seem normal. I was told by my doctor that while some stress is unavoidable (I've learned to handle myself alright during these stressful times) I am not to have a job in retail, or food industry. In fact the only jobs that I'm actually supposed to have that I'll be able to work well in is Youth Ministry (what I got my degree in), Music industry work (promotion, management, things like that; which I have experience in starting rom 2004) and then working as an assistant which requires skills that I've gained through working as an aide all through middle school and even some in college. Anything beyond that I'm unable to do because my brain just can't handle it.

I'm not a lazy person, I LOVE to work. We live in a time where it's hard to find and keep a job though...

I've been called lazy recently, been told I'll never amount to anything, that I'll never find a job.

As with any ACCer every day is a struggle but we are NOT lazy people. Every ACCer I've talked to is an overcomer with a desire to work hard. Don't judge us...learn to understand our situation and if you could be in a position to help an ACCer or anyone with a disability to get a job PLEASE step forward and help.

I love the work I do to spread the word about ACCers, I love being a helper, and I love crafting things. I'm not a complainer... but I'm also a realistic adult. I know what people say, what people think- and I don't really care what people say or think about me but my life is an example of my fellow ACCers...don't judge. Just help. Have a nice night!

Sunday, March 25, 2012


In my life I struggle with many things. I think that we all do. One of my biggest things that I struggle with is the fact that very few people if any actually understand me.

Here is the 411 about who I am. I'm a girl who is completely and totally honest to a fault. It gets me trouble sometimes, but it is also a virtue that many appreciate in me. Sometimes I do have a lot of difficulty putting into words how I feel or what's on my mind. But I do try. However, like many of us matter what I do someone misinterprets what I say or do.

A lot of people seem to read to much into what I say or do. If I say one thing suddenly they think I'm saying something much bigger than what I was saying. This is a pet peeve of mine. How am I supposed to move on with my life and be happy when everyone else thinks they know everything about me.

Heres a tip. Let the person with ACC be themselves. If they are trying to tell you something it WILL come out and while it may take a while they'll make it as clear as they can for you. But do NOT misjudge them. It will only frustrate them and cause more problems.

Communication is tough, whether or not you have a Corpus Callosum...but when you don't that seems to complicate things even more.

On a personal level I like it when people are straight forward with me, I am not all about walking on eggshells, not only do I appreciate that from others but that's also how I communicate.

I'm writing this today because it seems like many people in my life keep trying to tell me how I feel without giving me the chance to say it for myself. Do you like it when other people do that for you? I didn't think so. So what makes you think I will?

Instead of causing trouble in each others lives why can't we just come together and work this stuff out?

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!

Friday, March 16, 2012

Music and ACC

Today is the last day of Brain Awareness week but since I started posting these blog entries on sunday I'm going to post one more tomorrow and that will be about my ACC background.

Today's post is about Music and ACC

From a young age I was involved in music. My dad was a musician and he was always playing music around me. We've got videos from when I was about a year old bouncing to the sounds of Journey. Music calmed me down and it lifted me up. My dad used to sing at weddings and at church and I would watch him in amazement. I started singing when I was 3 just for fun. When I was 8 years old my dad and I started singing at church together. It's a memory that means the world to me now. I also started piano lessons when I was younger and was in band at school. I played Baritone, tuba, and percussion at various points in my 7 years in band. I was in choir during 3 years in high school and one year in college. Singing and music in general have always had a positive effect on me.

Then- I learned from an article that music helps your brain find neural pathways! After much research doctors have told me that they think that is why I function so well! Try it out! Listen to music, take up a musical instrument- see the effect it has. I've heard from other ACCers who truly feel like music has helped them as well.

Heres a page about music and ACC for you to read that has more to say about this:

Thanks so much for reading these posts this week! I look forward to sharing my background about before and after my diagnosis. :)

Thursday, March 15, 2012

School and ACC (getting bullied) includes Social skills and ACC

We hear many stories these days about kids getting bullied because they are different, whether it be because the child is guy, has an intellectual disability or other reasons bullying is a serious issue. Suicide rates are sky rocketing as the bullying issue skyrockets. So here I am sharing with you my story.

I tell people that I was bullied all through school and they don't believe me. But I was. In school I was a friendly person but I was awkward and never fit in. Social skills were a struggle for me. The simple things like when a conversation was over, or subject changes were things I couldnt catch onto. So people called me names they were harsh and mean and pushed me around.

So when my dad died I was put on homeschooling. During the year and half that I was doing that people at my school found me online and started sending me messages bullying me online! Which brings me to the whole wanting to die thing that I talked about during my "Depression and ACC" blog post. I was sick of getting bullied...but I survived through this. Then I graduated high school and was thankful for the bullying to be over with.

Then I went to college and the bullying got worse once I was finally diagnosed with ACC. People were mean, harsh, and made fun of me. I needed help in certain courses and fellow students would mock me. Finally I was given a platform where I preached a sermon about accepting people the way they are. The bullying stopped and my bullies apologized... but even now at 26 years old people who don't understand my ACC mock me and are mean to me...

I've learned to do my best in ignoring them. I also tell them the truth about my ACC and tell them that if they don't like me then they can leave me alone. If they don't leave me alone I block them on my phone or online and am civil to them in person.

School is difficult when you are going through difficult classes as well as struggling with social skills and getting bullied. Hold your head up high! School will be over in a few years. One day you'll be doing so well because you had to work so hard! You are not not alone. Prove all the "nay-sayers" wrong. Show them that while you may have to try harder you will still make it through! :)

Todays video that I'm going to post is another ACC kids video:

Wednesday, March 14, 2012

Depression and ACC

Most of my life I've struggled with depression. When I was diagnosed with ACC it was a tough road.

As a teen when my father passed away I was so depressed...I felt like I lived in a black hole. I was bullied and told that even though he had cancer it was the fact that he had a daughter like me that actually killed him- all because of me being weird! Well it was 5 years later when I found out WHY I was labeled weird- because of my ACC! Family even told my doctor I was weird! So even though I have always seemed like a very happy person I struggled deeply with depression and it was magnified when I was told I had something wrong with my brain!

Depression is a serious issue. Meeting so many ACCers I've seen that most of us struggle with depression on top of our ACC but we also seem generally happy! It's a bit confusing I guess but I think it has to do with the fact that we all try to find things that make us happy even through our pain.

So far I've discussed issues that everyone goes through in their own way- not just ACCers. Those with ACC do have a difficult time, just like those with Autism, or other disorders/disabilities, a lot of the time these things are magnified to be worse for us then they would be for someone that is considered "normal."

As an ACCer I'm quite sensitive though anyone that truly knows me knows that I stand up for myself. But when my depression is bad my ACC is worse.

Some days I function normally. Then during times where I am depressed I blank out, forget where I am, I have panic and/or asthma attacks, I get the shakes, get migraines and my autism, add, and ocd tendencies are more noticeable. On Friday I will talk more about these symptoms that I personally have. Depression and ACC tend to work against me in a major way. But seemingly so when the sun rises and my depression is better so is my ACC.

Depression is temporary, and ACC is permanent. If I can live each day and take care of myself. Then I know everything will be alright. As I've closed each of these blog posts I say this: If I can do it you can! I mean that more now then in any of them. Though I mean it each time. Keep your head up and remember that you are not alone!

Haven't decided what we'll talk about tomorrow yet but I'm saving my ACC background for friday! :D