Thursday, June 16, 2011

Meet Kelley - An Adult with ACC

photo taken by Kelley on recent camping trip on a hike up Table Rock Mountain in South Carolina

"Hi, I’m Kelley and I currently live in North Carolina.
I was encouraged by Sandie to share my story, although
I don’t know how informative it will be for those looking
for ways to help their struggling ACC kids.

I first found out I had Complete ACC and a small Chiari I
malformation eleven years ago at the age of 35, after an
MRI was done because I was having tingling in my hands
and feet. The tingling was apparently partly due to the
nerve compression that can come with Chiari and was
successfully resolved with bodywork such as myofascial
release. I was deemed asymptomatic by my neurologist in
regards to the ACC.

I have been on a medication to treat a mild seizure disorder
since the age of 17. It was not until the diagnosis of C-ACC
that the likely reason for the seizures was determined. The
ACC probably also explains why I am left handed (at least
according to one doctor I’ve talked to).

I had no developmental delays as a kid. I attended
mainstream classes throughout school. In addition, I
took some classes geared to gifted and talented students
during high school. I got As and Bs in all of my classes
except math, where I got Bs and Cs. I also struggled with
the math-heavy science of physics. When it came to math,
I could learn and understand the lessons, but would not
necessarily retain the knowledge three months later. The
classes I loved most were English, history, science, and
foreign languages. I liked math and physical education
the least. As far as extracurricular activities, I played
clarinet for three years and was a member of the yearbook
committee and school astronomy club for a few years.

I went on to earn a Bachelor’s Degree in English and a
Master’s Degree in Library Science by the time I was 25.
I have been working in various corporate and academic
libraries ever since. I own a home, drive a stick shift
car, ride a bike, and recently completed training for and
running my first half marathon (13.1 miles).

I was a bookworm and a teacher’s pet through most of K-12.
I was very shy and easy to tease due to my curly hair and
my love of learning. This caused me to prefer the company
of adults from an early age. The serious-minded social
world of adults just made more sense! I am also the
child of a divorce and I think that impacted my early
self confidence around others. But I always had a few
very close friends in school. And I never had trouble
reading social cues. I’m sure there were plenty of times
when overall I felt excluded, different, and lonely.
But I learned to cope with the friends I had and make up
for anything missing by immersing myself in schoolwork
and reading.

I read a lot while growing up. I remember taking a
standardized test in 6th grade that measured reading
and math competency. I don’t remember what my math
score was, but I tested at a 12th grade reading level.
While I may not have had as many friends or social
outings as I’d have liked in grades 7-12, the worlds
of JRR Tolkien, Charles Dickens, James Michener, and
many others, kept me pretty satisfied.

I was an only child until the age of 11. I sometimes
wonder if I would have been a little more adept socially
if I’d had an older sibling to learn from. Most of the
other kids at school seemed so immature that I reached a
point as a preteen where I just didn't bother to try to
associate much with them!

The three very good friends I had in junior high and high
school are people I still have some contact with today.
And I also keep in touch regularly with my two closest
friends from college.

For any ACCer or the parent of one who has challenges
with social skills, my best advice is just to observe
and practice those skills until they become easier. As
I stated earlier, I was shy and introverted growing up.
I didn't always know what to say to people. But I had
the good fortune to date a very extroverted man for
several years in my 20s. He would turn to strangers
sitting in the next booth at a restaurant and ask them
what they thought of some current, newsworthy event.
I watched him have many fascinating conversations and
make new friends and acquaintances using this technique.
I asked him how he had the courage to be so open, because
sometimes the stranger(s) he addressed would just give
him a rude look and turn away. He said he never took
these rebuffs personally and always looked forward to
what the next new conversation might bring. I more or
less picked up this same attitude and now really do
enjoy interacting with strangers. But I still consider
myself an introvert, because to recharge my mental energy
I need to spend quality time alone.

I am not married and have no children, but I have had
half a dozen healthy, long-term relationships. I have
been dating a wonderful man for a year now and am very
happy. While I currently live 2,000 miles away from my
parents and extended family, I keep in good touch with
them through regular phone calls and visits home a few
times each year.

My ACC has not been a defining element of who I view
myself to be. I am a little clumsy in that I brush into
walls sometimes while rounding corners or stumble over
my own feet. But I accept the bruises that occur. I
have a relatively serious and rational outlook on life
which gets me impatient when I'm hanging around anyone
whose only interest is joking around. (Don't get me
wrong - I love and cherish humor, especially British
comedy!) I have a poor sense of direction. But patience,
maps, asking for directions, and/or using a GPS unit
always eventually get me where I want to go. Excessive
multitasking mentally wears me out, but I make do. Are
any of these traits related to my ACC? Maybe. Maybe not.
I am not convinced that they are because plenty of people
with ‘complete’ brains have similar issues.

I met a few other adults with ACC issues at a conference
a few years ago. The one trait that I seemed to share
most with them was a tendency to ramble while having a
conversation. My conversation style is not succinct,
but rather very stream of consciousness oriented. I
can tend to verbalize tangential information that is
not of immediate relevance to the topic at hand, so it
may take me a while to get to a point! This trait
sometimes gets my family, friends, and boyfriend
frustrated. But for the most part they have learned
to adjust to it. But is this characteristic attributable
to ACC? Again, I do not know for sure. Before meeting
the others with ACC, I thought I communicated that way
due to all of the long-winded 900 page Victorian novels
I read when I was young!

My passions include reading, hiking, travel, and being
a lifelong learner. It is important to grow personally
and professionally throughout life and I endeavor to do

I hope my story will at least demonstrate to people that
ACC comes in many shapes and sizes. I do not know why I
have no obvious deficits. One ACC researcher I talked to
at a conference asked me about my family background.
After I filled him in, he determined that my high
functionality was due in part to being raised in an
environment with a lot of intellectual activity and
stimulation. Yes, all of that was encouraged in my
family, but I know that there are additional pieces
to the puzzle that may never be clear."

I am thrilled that Kelley contacted me because her
story IS very interesting, worthwhile and helpful.

Many parents who have a child with ACC are told by the
doctors (myself included) that there
are people out there
leading 'normal' lives who are not affected by ACC - who
may not know they are missing their corpus callosum.

As parents we hear about this possibility but seldom are
able to see it backed up with the reality. However,
thanks to Kelley...she has made this truth very real.

I am grateful to Kelley for contributing her personal
ACC story and making it available here on the ACC blog
for others to read. Thank you very much, Kelley, for
taking the time to touch the lives of other people.

If you want to leave a comment for Kelley I am
sure she would appreciate hearing from you.

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

Each person is unique. Every story is welcome and
every story is worthy.

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


  1. Thank you for sharing your story Kelley! Your experience gives me and my family a reinforcement of hope for my daughter and eases some fear related to her future.
    I am thrilled that you are leading such a fulfilling and joyful life.
    Kelly Horsford

  2. Kelley,
    Thank you for sharing your ACC story. Like the previous comment (Kelly Horsford) said, your story gives me hope for my 18 month old daughter and eases some of our fears of the unknown.
    Thank you,
    Heather Dedo

  3. Thank you for sharing your story. You have had a very lovely and poinant life already and you are not even 50 yet. Jane

  4. Hi Kelley, Trecia here Grandma to Joel David who is 2 1/2 and has c-acc. You can't imagine the joy we feel reading your story and knowing the possibilities for our children truly are endless just as they are for all children. So many insensitive uninformed Drs give us such gloom and doom prognoses even as these children are still in the womb that to hear your story just reinforces what we're finding out day to day. Our children can and do learn can and do socialize can and do EVERYTHING just sometimes on their own time line.

    I want to commend you on your half marathon training/running. I'm 49 and ran my first half in 2009, I did another in 2011 and am registered for my third this coming up Oct.

    Thank you again so much for sharing your story.

    Grandma to Joel David c-acc 2 1/2

  5. Thanks so much for posting this Sandie. What an inspiring, positive story Kelley has. It made my day and made me so much more hopeful about my Ava's prognosis. Thanks again!

    Mom to Ava (16 months with C-ACC)

  6. Thanks for your post! Our son has C-ACC. We've been working with him intensely since he was born. No one notices he is any different from any other child. He has a difficult time processing things as well as some minor sensory integration and motor planning struggles but he is only 4 and he just mastered his short vowel sounds. I'm thrilled! of course! - It's encouraging to know you are doing well. ohh by the way... he is also left handed :)

  7. Dear Kelley,
    Thank you for sharing your story and I am so impressed with your story it is wonderful. You are so lucky that you didn’t have development delays, and your school is OK and really I can say you are successful woman. your case show us another side of C-ACC, and your story made me more optimistic regarding my little son who is 4 years old and is diagnosed with partial ACC, he has development delays, he stared to walk just a few months ago,…. He has seizures and is under anticonvulsant medicine …….I am in I big worry about his future about school society integration……., but when I saw your story it gave me a big hope and I become more optimistic about my little sons future. Thank you again, and I wish you all the best in your life.


I am very interested in reading your comments and
look forward to hearing from you. Thank you.