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?

"No"


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."

Sincerely,
Vance


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

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.

QUESTIONS ASKED:

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
adventure.

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.

Cherished Moments...

Today I was sitting quietly in another room
in our home when I heard laughter and the
everyday goings on of playfulness taking
place between my husband and our child in our
child's room.

But then my attention was completely captured when
I heard the voice of my husband saying to his child...


"I have this little boy...he's so sweet
I think he's made out of candy."


and Matthew giggles filled the room and my heart
danced with pure, sweet joy.

I am forever blessed and touched to have heard that
and I am so thankful for my loving husband and our
"sweet as candy" child, Matthew.

What Time Is It?

The answer to this question has a story.

My child, Matthew, has complete Agenesis of the
Corpus Callosum. He is 17 years old but he
functions on the level of a young child.

Teaching different animals and their sounds is
fun for all kids.

Quick example: I will say:

"Matthew, what is this?"

*shows him a Pig*



He will use sign language and sign "pig".

Then I will say:

"What does a pig say?"

When you ask a child what sound does a pig make, they
can typically tell you "oink oink." But Matthew cannot
SAY it so we worked instead

(for a lonnnnnnnnnng time)

helping Matthew learn how to make the SOUND a pig
makes....*snorrrrt*

It was very difficult for him to learn.

After a VERY long time Matthew learned how to make ONE
"snort".

It was a BIG event the first time that I heard him make
the sound. But the only time he could snort was laying
down on his back. If he would sit up, no more snort to
be heard.

After A LOT more practice and a long time, he mastered the
skill of making one single snort sound while sitting up!
It was a celebration!! Mama & Matthew piggy snorts filled
the room, accompanied with laughter.

There's no other way to say this except to just say it.
Matthew's Mama *points to self* is a goof. Matthew and I
are both silly and we laugh a lot.

I often make little piggy snort sounds for Matthew and
give piggy snort kisses. He can make one piggy snort back.
I wanted to help him learn to make several snorts in
a row so that became our mission and we worked on it.

The first time he decided to practice "snort, snort, snort"
all in a row was this summer right out in public while we were
outside walking on the sidewalk in a strip mall shopping area.

It took every ounce of ummmmphfff in Matthew to be able to
get into the groove (and caught me quite by surprise) not
to mention was very funny.

In order for him to make more than one snort he has to put
his whole body into it...his shoulders move up rigidly, his
head jerks and his whole body becomes a snort, snort maker.

Learning this new skill (and it is a very important skill)
*nods and grins* is something he worked on all summer long
and it typically happens at home on a whim.

But last Thursday we went to the market, Mama, Dad and Matthew

And.....



For whatever reason (of which I do not know)...it was
"snort snort" practice time for Matthew.



The grocery cart train...

Matthew pushing the cart, practicing his "snorting" extravaganza

Mama the caboose, laughing like a little kid

And Dad the Engineer, pulling the chugga chugga "snort
snort" giggling grocery cart down the aisle, saying
"you guys are crazy."

I caught the grown up in me saying out loud, through my own
childish chuckles, that there is a time and place for snorting
and the market isn't the time or place but it quickly became
apparent that the little kid in me (of which I am quite fond)
won and I relished in the fun and amusement.

He snort, snort snorted down the aisle, to the bakery
section where Dad bought a little cake and continued right
on practicing through the check-out.



The girl grocery clerk with dark hair and a big smile, who
rang up our groceries, was so sweet.

I told her (amidst Matthew the snorting machine) that he
just learned how to do this. She replied, with a smile,
"He's having fun."

So there it is, a little "oink oink" humor.

I guess you could say Matthew is a little ham.

But he is OUR little ham and I'm super proud of Matthew and
everything that he learns, even when he innocently has the
urge to practice learning right in the middle of a grocery
aisle.

Those silly little snorts with a mixture of Mama's laughter
and Dad going along for the ride made for a very good day
that just happened to take place in a small, local, friendly,
family owned market....one of our favorites for fresh fish,
but now it will forever hold a very special memory of a
certain sweet, little ham.

A Labor of Language (and Love)

Language and having Agenesis of the Corpus Callosum
can produce a variety of challenges when it comes to
communicating.

I have wanted to include more information here about
the different types of speech and language issues that
some people deal with who have ACC.

Recently the parent of a 13-year-old child with
Agenesis of the Corpus Callosum shared a true story
snippet of insight in an ACC support group. With
permission from the parent, I am able to share it
here with you.

I love how the parent spells out the struggle and makes
it come to life by telling an actual conversation which
provides a glimpse inside the world of what it's like
to not only be the person with ACC and struggle with
words, but also what it's like to be on the reciprocal
side, trying to figure it out and piece it together.

The parent is replying to another parent and writes:

Celeste (13 cACC) was a vowel talker too! I used to say she
did not ever babble. No mamamma, babababa, dadadada. Nope!
But she wasn't quiet, she just made very loud vowel sounds.
Great to hear someone else had the same experience. Celeste
is 13 now and still is not one of great words. She is not
quiet, she is just not a great communicator.

Celeste still looses words. Words she completely knows but
when talking often just forgets them. Just yesterday for
breakfast....


Celeste: "Mom, can I have one of those things?"
Me: "What things?"
Celeste: "you know, the uh, um, thing"

Now mind you she is giving me some sign with her hand but I
had no idea what she was saying.


Me: "Do you eat it?"
Celeste: "Yes, mom! A, um, um, you know, um I ate it."
Me: "You ate it when?"

Now she is getting frustrated so she really cannot communicate.

Celeste: "UGH! Mom, come on. I just want a thingy. You know. From the fridge."

Oh, yeah, now THAT narrows it down!

Me: "Do you cook it?"
Celeste: "Yes in the microwave."
Me: "Is it big or little?"

Of course this is a stupid question so now she is mad.

Celeste: "MOM! A thingy. You heated it up yesterday and I ate it. For breakfast yesterday"
Me: "Ohhhh, a muffin?"
Celeste: "Ah, muffin, yeah, that's it."

"We have many many conversations like this."

The parent went on to tell me...

"Some words she has "lost" in mid conversation....Refrigerator,
broccoli, muffin, pencil. The list goes on and on. It is never
a word that is unusual and it is a word she may have just said.
Crazy! There are times I feel like I live one giant charade game!"

Sunset Thoughts

Sunset Thoughts


Reflections in the water
peace upon the sky.

Put all your cares and worries
on waves of lullaby.

Illuminate your blessings
ponder them with love...

Sealed with a sunset
from God in heaven above.


© Sandie L. Davis 2010

Photo of the beach in Lincoln City, Oregon

Interactive Alphabet - ABC Flash Cards

Educational methods and teaching strategies can sometimes
be a challenge when you have a child who has Agenesis of
the Corpus Callosum.

I am always on the search for new ways to help my child,
Matthew, who is completely missing his corpus callosum,
learn through methods that speak directly to his style of
learning.

Flashcards, for Matthew, are not an option.

But give him "Flash Cards" that he can see, hear and interact
with and now you speak his learning language.



You can actually play the Xylophone and hear the musical
sounds by touching each key. My child loves this one and
so do I. Last night I played "twinkle twinkle little star"
on it. Slide your finger from one end of the keys back
to the other end, like Matthew just learned to do, and see
what happens.

Interactive Alphabet - ABC Flash Cards is a new educational
iTunes "app" that is awesome!!

It is a hands-on experience that allows a child to interact
with each letter of the alphabet in a multi-sensory way.

Touch the "Aa" and hear it SAY "A".
Touch the "Aa" again and hear the letter sound.

Touch the word associated with the letter and
HEAR THE WORD out loud...as many times as a child
wants and/or needs to hear the word.

Repetition, Repetition, Repetition, a very common motto
associated with many people who have Agenesis of the
Corpus Callosum.

Touch the picture associated with each word and bring
the word to life right before your eyes, ears and
your fingers. Then watch those fingers want to keep
touching, playing, exploring and learning.

Watch a demo video clip below:



Tt is for TRAIN is a favorite of ours. Touch the train
and it starts moving on the tracks..."chugga chugga chugga".

One improvement I would like to see is that when we use
Interactive Alphabet on the iPod Touch, the tiny before and
after letter choices and the main "ABC" choice located at
the top of the screen do not always stand out well
enough to easily see them on every letter page.

Matthew has some challenges with fine motor control and
he requires some hand-over-hand help to show him what to
touch and when to slide his fingers to make something happen.

Sometimes he moves his finger near the top of the screen
while interacting with the corresponding letter picture and
he accidentally touches the "ABC" main key without
meaning to which abruptly moves him off the screen he
was playing on and sends him back to the main A to Z
letter choice screen. But overall he is doing well using
Interactive Alphabet on his iPod Touch with his iMainGo
2 speaker case.

I am extremely impressed with this Interactive Alphabet
app, so much so that the first night I purchased the "app" I
found myself acting like a kid eagerly touching letters and
playing.



I zipped the ZIPPER up and down and up and down, hearing
the zip zip zipping sound each time, then touched the
TRAIN, with Matthew, and watched and heard it chugga
chugga along the tracks with an added interactive
"woo woo" from my child, Matthew.

On Sunday my child and I played with Interactive Alphabet
together and we loved every ABC minute of it. We shared
our own imaginative interactive fun on top of the built-in
action that is part of the game. For example, the
"Rr is for ROBOT" page became even more fun when I turned
into Mommy Robot and said:

*in robot voice*

"Math-You touch the word ROBOT".
"I am Mom-Me Row-Bot, You are Math-You Row-Bot.
We are Row-Bots".
"R" "rrrr" "rrrr" Rowwwwww-Bot"

He signed the word "more" several times to keep Mommy
Robot activated and he also touched the word "ROBOT"
when I would ask him in a robot voice to find the word!!
It was an amazingly fun time!!

Another one of his favorite letters to interact with is
"Dd for Dinosaur". He imitated the noise the dinosaur
makes and did this over and over.

After a little hand-over-hand help from me, Matthew
mastered the "Zz is for ZIPPER" and was zipping it
up and down.....Zippity, Ziiiiiip, ZIP!

It's wonderful watching my child interact with a
motivational teaching tool that is helping him learn.

Interactive Alphabet by Piikea Street is fantastic FUN!!

Choose the option of having 1 of 3 different musical tunes
playing in the background during the interactive fun or
choose no music at all.

This "app" is one that I know we will be using a lot and
I can envision using it with my child in a variety of
educational ways to help him learn to find letters of the
alphabet and words too. I anticipate it might even help
and encourage him to improve his fine motor skills.





$2.99
Buy Now in iTunes App Store

Want to read more reviews here about educational "apps"
for the iPhone, iPod and iPad that we discover, like
and use?

What are your child's favorite learning "apps"?