Tuesday, December 21, 2010

Meet Vance - An Adult with ACC

"Hi my name is Vance and I am 57 years old. I have Epilepsy, Asthma, Eczema, Heart Disease and Complete ACC.

My discovery of ACC is like a jig saw puzzle coming together in pieces."

When did you find out that you have ACC? How old?

"I was being treated for epilepsy and the doctor showed me the MRI and pointed out the black spot in the middle where the Corpus Callosum is supposed to be. That was at age 27. That was the first clue. How I suspected that clue was this:

At birth I was born with vision problems. I had no depth perception in my eyes.

I was told my first grade teacher had to order books with extra large print. I also had to repeat first grade. To my knowledge that was the only special education I had till High School.

My epilepsy started at age 10 and I Started taking Phenobarbital at 10.

Teasing started as a result. This lasted through my school years.

I had many seizures through the years, grand mal, petit mal and psychomotor seizures.

At 12 years old I remember being told I was to old to correct my gated stance.

At 15 or 16 I had 2 tests Myelography and Arthrography. These are x-rays that were used to x-ray my brain. I got sick from the test and was in the hospital for 12 days."

What did you struggle with in school?

"I struggled in school from grades 1 to 12. I can remember learning sentence structure and not understanding it. Math was always hard; fractions were tough and reading books I disliked. I can remember doing reports and not using my own words but encyclopedias.

As an older adult I find that I now like subjects that I did not like when I was young."

What did you enjoy most and do well at in school?

"I guess all through my school years it was lunch or recess the most. I found reading writing and arithmetic hard. Years later I would find that to be true.

I guess the thing I enjoyed the most was working in the school office and interacting with other adults and meeting people."

Did you struggle with social skills in school?

"I was shy quiet boy and had a few friends. I remember the 1960’s being in elementary school and being teased for taking Phenobarbital for epilepsy.

In high school I remember many a day having lunch by myself. Again in high school I was a loner.

In High School I was pretty much a loner.

I attended the football games my senior year and a few dances. The dances were at my high school and the foot ball games were at a high school across town, as we did not have a football field.

I never attended my Jr./Sr. Proms or Grad night at Disneyland.

My favorite outlet was a club called Campus Life/Youth for Christ.

We had home groups that met once a week for a bible study and we also did school events such as seeing how students would fit in a VW Bug. Campus Life San Gabriel Valley did group things such as a Haunted House for Halloween, Easter and Summer Retreats."

Did you make friends easily in school?

"I was pretty much a loner; I had 1 or 2 friends. I had more acquaintances though. I think with being shy as a kid and having health issues did not help but limited me.

In high school I had a few friends thanks to the Campus Life Club.

I made an attempt at college and the ice seemed to break as I had meet new people from my area. That really helped. !!!!!!!!!!!"

Do you still struggle today with social skills as an adult?

"Yes / No!!!!

What helped me was working for my cousin who owns a restaurant and I had to wait on people and give them what they purchased. This helped me break out of my shyness. I was able to speak to anyone!!!!!!!

Age and experience will teach you the dos and don’ts of speaking to people. Being observant of situations helps too. !!!!"

Can you ride a bike and drive a car?

"I had a tricycle when I was a child; I was told I peddled backward, but I eventually learned the right way. At 13 years of age I learned how to ride a bike that lasted till I was 30 when I ran in to an old car parked in a shadow at night.

Balance, coordination, and depth perception played a part in my decision to stop riding a bike.

As far driving goes, I tried several times to get my license but could not pass the driving test."

I asked Vance: I was wondering if you couldn't pass the
written drivers test or the actual driving part of the
driver's test? Did you pass the written test? Then
you couldn't pass the actual driving part of the test?

"The high school gave us drivers preparation, going through a drivers simulator and than behind the wheel training. After that training I did not persue a license right away.

Some time had passed and this time I checked out the Department of Rehabilitation to try again. They paid for a driving school for a week.

This time I went to the DMV and took the written test and passed and then did behind the wheel with the DMV and failed because of blind spots when driving. I tried 5 times."

Did you attend a mainstream classroom?

"Yes, I did from K to 12.

Now I am back in public schools as a disabled adult, taking computer classes.
I am taking my classes self-paced and not lecture style."

Did you receive Special Ed resource help?

"From 1959 to 1972 in my school years, Special Ed did not exist in my school district.

I remember my sophomore, junior, and senior year being in a reading class with the same teacher year after year. Other than that I received no assistance."

Did you attend college? Did you get a degree?

"Yes. I attended a 2-year college out of high school but sadly did not take it seriously. The end result was I did not graduate from college. It was hard and with no special Ed it was even harder."

Do you have a job and if so what do you do?

"I did work for my cousin for 25 years in a mom and pop restaurant.

I pretty much did every thing accept order supplies, pay the bills and do employee pay checks.

After 25 years of working health issues started to interfere with my job and I was laid off because my eczema had started to get so bad.

Than I made an attempt to get on SSI after 4 years of waiting I succeed.

Thank you God!!!!!!!!"

Are you married? Single?

"I am 57 and still single with no children.

Have dated a few times but nothing-lasted more than 4 months.
I have wondered if my ACC had something to do with that."

Do you have children?


How does ACC affect you today as an adult?

"I think as an adult today my childhood is magnified in several areas such as coordination, reading skills, math skills, social skills, judgment skills etc."

What do you enjoy doing the most in life?

"I thought about it quite awhile as an older person at ¨57¨ as your interest changes, what I enjoy today I don’t think at ¨18¨ I would have enjoy.

Let me give you some examples:

At 18 I did not drink coffee, today I do.

At 18 I was involved with a group called Campus Life/Youth for Christ, today it is no longer in LA County.

Today at 57 I like to watch tennis and a lot of sports at 18 I was not a big sports fan. I think the reason was due to avoid any contact sports because I have Epilepsy."

What are you passionate about?

"I thank God for my family and all the encouragement they have given me over the years.

My belief in God as I know I was created this way for a reason. My hero is the Apostle Paul and his “thorn in the flesh”. Let me say it has taken half of my life to accept the way I am. It has not been easy. !!!!"

This story has been something that Vance wanted to do for a
long time.

Through his own desire (and a lot of hard work
on his part), Vance accomplished what he set out to do.

I am so happy to see the fruit of his labor and to have had
the pleasure of getting to know Vance better. He is a very
kind person.

It is an absolute privilege to be able to include Vance's story
here for you to read.

Thank you very much, Vance. You wrote a wonderful story!

Vance shared this with me in an e-mail:

"I want to help any one I can with ACC. Young or old or ACCer
or Parent."

After posting this story I received an e-mail from a
grandma who has a young grandson with ACC who read
Vance's story. She commented that Vance didn't
mention if he struggled with buttons and fastening
clothing when he was a kid.

Here is Vance's reply:

"You asked me about snaps and buttons.
As a child it was hard to find button holes and than put the
button through the hole.It depended on the shirt to to how long
it took.
Tying shoes was tough after you made the knot I always wanted
the laces even and I hard time making the bow.
I have been told learning colors was hard for me.
There was always a nightly reminder to take my epilepsy medicine too.
Toys like Lego's and Tinker Toys were you assembled things was tough too.
Finally thank God for Grandma's and Grandpa's !!!!
I have a lot of good memories of my grandma,staying with at Christmas.Making cookies,walking to the store store.Taking of me with my broken leg etc.
All my grandma every knew was I had epilepsy.
Remember we are a family brought together by ACC.Lets help and look out for each other."


If you want to leave a comment for Vance I am
sure he would appreciate it.

If you are an adult who has ACC or a corpus callosum
disorder, would you like to share your story?

I would love to hear from you. Send me an e-mail

Monday, December 13, 2010

Questions and Answers

Cassie is a 20-year-old adult college student who has
complete Agenesis of the Corpus Callosum.

She was recently asked some questions by a parent in an
ACC support group.

Gaining the perspective of an adult who has ACC is always
interesting, eye-opening and valuable.

With Cassie's permission I am able to include her input
here on the blog for you to read.

Cassie writes:

"A while back (
names parent) asked me about school. At the
time I did not have the time to answer so here I go.


What are you taking?
What do you like about it?
What are your ultimate goals?
What are some challenges you've faced?
and some successes you've had?
What has surprised you about school?
What has been just like you expected?

I am at (
names college and location). Last January-August
I took a pre-health program with the intention of becoming
a Registered Nurse. I was not successful.

I am currently in the Transitions to College Program for
students with Learning Disabilities. It is a small class
of 15 and 2 professors. I take English, Math(individualized,
Human Development,and Learning Strategies. It is a great
program, it is helping me to improve my self advocacy
skills and organizational skills. We are encouraged
(well told to) use the assistive technologies such as:
Dragon Naturally Speaking, Kurzweil, TextHELP and
Inspiration (still learning to not HATE that one).
They also assist in vocational planning. Doing a really
thorough interests questionnaire.

This program has so far helped me to grow as a learner;
relizing my strengths and weaknesses, strategies for
organization, time management, note taking and study
and test taking strategies.

I have had many small and some big challenges but the
biggest would have to be living away from home: not
realizing when some household chore needs to be done,
budgeting and times management. It was really difficult
for me because I wanted to be the responsible Adult
everyone at home knew me to be but without my Mom to
guide me I started to fall through the cracks. Not only
was I trying to make friends and do well in school I had
to learn to do many things on my own without the guiding
from my Mom. After eight months of struggling I realized
that I need to get my Mom attached to my Bank account
because I could not deal with budgeting and finances on
my own, moved into an apartment with friends that I knew
were supportive and not rude about my being different and
I also sit down with someone from disability services and
they help me to structure out my week (when to do
homework, what chores when, appointments, etc).

Successes i've had: well realizing I need to ask for help,
passing the courses that I have.This semester getting 80's
and 90's in english and math. Also, getting up the courage
to attend a local church and makeing friends through the
post secondry small group.

What has surprised me about school: the large amount of
classes (i reduced my course load the first two semesters),
That I can actually get honour grades. that I am able to do
most assignments on my own without a professor constantly
looking over my shoulder.

What has been just like i expected:NOTHING!
I did not know what to expect when I began this new
chapter in my life. After all the trials the good lord
put me through the summer/fall before I started I really
had no expectations other than to survive this new

I could continue to write much more but am beginning to get
finger tied...LOL"

Thank you very much, Cassie, for taking the time to share
your very honest and open feelings about your experiences
and challenges with college and life in general.

Please consider taking a few minutes to leave a comment for
Cassie. Or you can send me an e-mail for Cassie and I will
forward it to her.