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?


"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

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.

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.

Thursday, November 25, 2010

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.

Saturday, November 13, 2010

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.


Monday, November 8, 2010

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!"


Saturday, November 6, 2010

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

Monday, October 25, 2010

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"?


Wednesday, October 13, 2010

Sara's Story - An Adult with ACC




Hello, My Name is Sara, I'm 30 years old and have
Hydrocephalus (VP shunted), Epilepsy, Complete
Agenesis of the Corpus Callosum & Chiari Type 1.

I was made aware of my ACC during an emergency room
visit for Hydrocephalus related issues. I was 19 yrs
old at the time.

I have always struggled in school both academically
and socially, math was always the most difficult
subject, though in 4th grade my reading and
comprehension were at about college level. To this
day math is still very difficult for me.

I always had friends but seemed to lose them as
they moved on to other interests (like boys) and
as I progressed from Elementary, Jr & High School.

I was always more at ease with my friends parents
then my friends, and generally speaking my friends
are usually much older or much younger than I am.
I never quite fit into my peer group, and still
don't feel like I fit in.

I attended Regular Education classes with Special
Education support from Kindergarten until I
graduated High School.

My Balance has always been off and things like
riding a bike and roller skating always took
considerably longer then my normal peers, however
I was very strong willed and rarely gave up on
anything, at 30 I still have yet to get my drivers
license, though I hope to have it one day.

I'm the mother of 5, 3 in my home, and 2 in my heart.

My youngest son was diagnosed with an Autism Disorder
at 18 months, after reading a study on Autism and ACC
misdiagnosis it prompted me to research my own CC
disorder to see if my son might have one as well,
he does not.

We're currently testing my oldest daughter for
either an Autism or CC disorder, only time will tell,
however my middle daughter seems to be perfectly
healthy.

I also suffered 2 miscarriages, a little girl
later in the pregnancy due to a severe Spina
Bifida issues, and a son for unknown reasons.

I've been raising my kids by myself for the majority
of their lives with going to school, I'm working
on a continuing Medical Office Management Degree
specializing in Medical Billing. I've managed to
stay on the Honor roll, a real feat given my earlier
school struggles and one I'm extremely proud of!

My passion is my children, especially Pregnancy &
Infant Loss after the death of my babies, however
I'm also very active in the Autism community and
am finding my way in the ACC community as well.
I may have ACC, but I never let it have me!

~Sara


I am honored to have the privilege of being able
to post Sara's story here for you to read. And I
am incredibly thankful to Sara for her willingness
to share her own personal ACC story and details
of her life with us. Thank you very much, Sara.

Sara left a comment on a previous blog post
responding to "Autism and ACC".


"I have ACC and have 2 Children with Autistic-Like
Tendencies. One child has Autism (MRI ruled out ACC)
The other remains to be seen!"

Her comment sparked some e-mail exchanges between us.

In her e-mail to me, Sara graciously wrote:


"If you ever want to talk or ask questions feel free!
I live a very " open book" life."

Being the parent of a child with Agenesis of the
Corpus Callosum, and having a great interest in
learning more, I took her up on her very kind offer
and asked Sara some questions.

When did you find out that you have hydrocephalus?


"Since birth, I was actually one of the few babies diagnosed
in utero (in my mom's 8th month of pregnancy) before it was
commonplace."

Do you get any special education accommodations or
assistance at the school/college that you attend now?
If you do, what type of services do you receive to
help you?


"I don't have anything specifically in place however if
I need anything my tecahers are open and accomidating and
I don't suffer penelties for late work the way my normal
peers would. It's a very small private school so they don't
have a disabilities department the way a community college
or major university would, but they're willing to work with
me if I ever need extra time on tests or assignments. My
failures in High School have taught me that unlike most
people who use one learning style...I need them ALL in
order for the information to click...see it....read it.....
do it."

Is there any one thing (or more than one thing) that
you deal with now as an adult who has ACC that is
particularly difficult for you?


"I think the most difficult thing is the social aspect,
especially now that I have kids and need to interact
with other moms....It feels weird trying to fit into
their world. :( Part of me is still so much a child.....
and probably always will be. I can't always explain it,
but I guess that's part of the problem :D I just don't
feel like I *fit* with the normal moms."

Have you tried in the past to get your license by
taking the written test or the actual driving test?


"I've taken the written test and passed it, but the
driving test I haven't taken or passed, I still feel
very unsure of myself behind the wheel and I don't
have a car I can practice in and the length of normal
driving instruction classes doesn't seem long enough
to me."

I could go on and ask Sara more questions...but I
thought it would be a great chance for some of you
to ask Sara a question so I asked her if she would
be ok with answering your questions.

Sara replied:


"That would be fine! Like I said.....Open Book.
If I can help another parent I will :D"

QUESTIONS FOR SARA:


You mentioned in a post to the Listserv that it took you
6 years of studying and hard work to get your high school
diploma. THAT is a huge accomplishment!

My questions are: Did you attend high school for four years
and left after four years without a high school diploma?

Or did you spend two additional years in high school
working on getting your high school diploma?

Or did you study for the next two years once you left
high school to get your GED?

Do you find it difficult to remember things that you
study and read?

Do you have difficulty recalling information?

What specific kinds of things do you do that help you
remember and recall information?

SARA'S ANSWERS:


Questions are ALWAYS welcome! I attended HS for 6 yrs
straight, though I had to repeat 10th grade 1 1/2 times,
and then 1/2 of 11th grade :D so that made 6 yrs :D Back
in the day a GED wasn't * as good* as a HS Diploma so
H*ll was going to freeze over before I didn't graduate!

As far as learning recall can be hard for me and in HS
they focus so much on " find your learning style" and
while some are auditory, and some are visual and some
hands on learners....I really need all 3 to get it!
Plus it really took me until College to find an
organization system that worked for me...so it's hard
to STUDY notes if you can't FIND them :D I spent all
of HS pretty much trying to find my way on my own....
one thing would work for a while and then it would be
too hard to keep up....and now in college I keep it
simple...1 notebook one folder...everything has a place.
In HS every teacher seems to have a way *they* want
things....and everytime I tried * thier* way I failed!

QUESTIONS:


When you read something in a book, can you easily remember
what you read and recall the information at a later time?
Is that easy for you?

If it's not easy to recall information, do you do specific
things that help you when you study...like type up notes or
turn it into a song or something else that helps?

Or is your difficulty more with staying organized?

SARA'S ANSWERS:


Yes Information Recall is pretty easy for me , maybe
not the first time but what I will do is read something
all the way through the first time (I devour books!) and
then go back and reread maybe 1-2 sections/ chapters at
a time if I really NEED to know the material
( like for a test) but usually after the first time I can
tell you the gist of a story.

But the majority of my issues in school were organization
especially because it seemed there were always 1-2 teachers
(if not ALL of them) who insisted i have a separate notebook/
folder for each class and that was too much for me to keep
up with. Now I have one Folder...and 1 multi-subject Notebook,
much easier

If you have a question for Sara I will pass it
on to her and post Sara's answer here on her story.

You can also E-Mail me your question for Sara.

And if you want to leave a comment for Sara I am
sure she 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.

Monday, October 11, 2010

Autism & Agenesis Corpus Callosum



I recently watched the movie "Temple Grandin" on DVD
and absolutely loved it.

Have you seen it?

It is an original HBO film.

I rented the DVD from redbox for $1.00.




Dr. Temple Grandin is an Author, a Scientist and a Professor
at Colorado State University. Oh, and she happens to have autism.

The movie is based on Temple Grandin's life story and
is absolutely worth seeing.

Watching the movie is an eye-opening experience for
those of us who don't have autism, for those of us
who work with kids who have autism and for those of
us who are parents of kids with autism or
agenesis of the corpus callosum.

Temple Grandin, who has autism, has a very unique ability
to provide incredible insight into what it is like to be
autistic.

When you rent the DVD movie be sure to also watch
The Making of Temple Grandin Commentary in the Special
Feature section of the menu.

Actress, Claire Danes, portrays Temple Grandin in the
movie.

The Commentary goes through the movie and gives
verbal input from the real Temple Grandin and also from
the writer and director.

I found the Commentary to be very insightful and
interesting listening to their dialogue and conversations
in addition to the movie scenes.

And if you're wondering why I'm posting about autism on
a blog that's about Agenesis of the Corpus Callosum it's
because, while ACC and Autism are two separate
neurological disorders, some kids who have
Agenesis of the Corpus Callosum (or a corpus callosum
disorder) may also be diagnosed with Autism,
Autism Spectrum Disorder (ASD) or Pervasive
Developmental Disorder-Not Otherwise Specified
(PDD-NOS).

Some kids who have ACC don't have autism but can
sometimes display some autistic-like behaviors and
may have some similar autistic traits like sensory
issues, stimming behaviors, challenges with abstract
thinking and social challenges.

My own child, who is completely missing his corpus
callosum, does NOT have autism but he does have some
autistic-like behaviors.

Some kids who have ACC may be bothered and even scared
by loud noises or by particular noises. They may cover
their ears and need to get away from the noise.

Some kids who have ACC may also have trouble processing
the information that they hear due to sensory processing
issues.

Due to the lack of awareness of ACC and lack of written
information pertaining to corpus callosum disorders, it can
be helpful to seek out books that deal with autism because
they may often times provide some information about similar
symptoms and challenges sometimes also seen in people
who have corpus callosum disorders.

Hopefully in the very near future Agenesis of the Corpus
Callosum (ACC) and corpus callosum disorders will be as
familiar and recognized as the diagnosis of autism.

More research with respect to corpus callosum disorders
may even provide a possible correlation between the
corpus callosum and autism..?

Getting back to the movie, check out a conversation with
Temple Grandin in the video clip below:



Temple Grandin strongly believes (and speaks often about)
the need to have more research on sensory issues.

An interesting conversation took place in the
Making of Temple Grandin Commentary that dealt with
sensory issues. It involved a particular sensory
issue involving her aversion to automatic sliding
doors.

This question was asked of Temple:


"If someone had gone with you through a door all day
long do you think it would have desensitized you?
Could you have gotten over it that way?"

Temple's Answer:


"You can desensitize. See, this is something that is
always brought up about sensory problems. Well, if
the kid is afraid of noise do you just jam them into
it? You can do a certain amount of that desensitizing
but it works best if the individual makes the door
move or turns on the sound."

Temple goes on to say that if you just jam a person
(who has sensory issues) into the middle of a big, noisy
situation they can get into total sensory overload.

She has also written several books about autism
that deal with sensory issues, social challenges
and more.

I have read her book titled
Thinking in Pictures.
She is a wonderful writer. I love that she is clear,
concise and writes in an easy-to-understand style that
flows giving detail and insightful information.

Check your local library to borrow Temple Grandin's
books.

Click on the links below to read inside her books.

Thinking in Pictures-click to read




The Unwritten Rules of Social Relationships-click to read




The Way I See It: A Personal Look at Autism & Asperger's-click to read




Dr. Temple Grandin speaks at many Autism Conferences
across the US.

Is Dr. Temple Grandin speaking in your area?

2010 Autism Conference Schedule




Personally, I think it would be great to have Dr. Temple
Grandin speak at the next Disorders of the Corpus Callosum
Conference.


"Good teachers understand that for a child to
learn, the teaching style must match the student's
learning style."
-- Temple Grandin, Ph.D

Sunday, September 12, 2010

Handwriting Help



Handwriting can be a challenge for some kids who have
Agenesis of the Corpus Callosum.

There are several concerns, for some kids who have ACC,
when it comes to handwriting. One of them is...holding
the pencil correctly while being able to make the writing
movements comfortably and easily.

Some kids who have ACC may have challenges with fine
motor skills.

My child, Matthew, who is completely missing his corpus
callosum, picked up pencils, crayons and markers by
wrapping all of his fingers around the pencil and making
a fist...also called a palmar grasp (which he still prefers).



We also tried 100,000 different kinds of pencil grips (ok not
that many but A LOT) with Matthew until his special
education teacher in about 5th grade discovered a
particular pencil grip that he used/tolerated fairly well.
Although he is still unable to write letters, he can make
circles and lines.

There are also additional struggles and challenges when it
comes to handwriting and some kids who have Agenesis of
the Corpus Callosum that I hope to address in another post.

But the whole reason why I am writing this post is because
I want to share a couple of handwriting strategies with you
that I have seen many parents, who have a child with ACC,
speak highly of and say how much they have helped their
child.

The first is an ergonomic pencil called Twist'N'Write
made by PenAgain. And the pencils are refillable.



Twist'N Write Pencils by PenAgain.

The Twist 'N Write pencil is made for small hands
(elementary school children) and cost only a couple
of dollars for a two-pack.

View a story about it being used in the classroom
on Fox news:



Read what an Occupational Therapist has to say about
the Twist'N Write pencils:


"Hello Pen Again. I am an occupational therapist at Lucile
Packard Childrens Hospital and I work with outpatients at
our therapy center at 2345 Yale Street in Palo Alto. I want
to thank you for sharing the new Twist n Write pencils with
our OT department, and to let you know that our supply of
pencils has diminished to only 2 because we have found it
to be so helpful for our patients. The pencil has been
particularly helpful to children with Down Syndrome, hand
or thumb weakness, and those with poor coordination who
cringe at the sight of a pencil, but is intrigued by your
pencil’s unusual shape. An 18 year old patient of mine who
has had brain tumor surgery with residual weakness and
hypertonia in his dominant right hand, is now able to
write again with that hand because I started him using
the Ergo Sof. Now, he is writing a journal entry every day,
and drawing cartoons."

J. Kitsuwa-Lowe, MA, OTR/L
Occupational Therapist

PenAgain also makes pens



as well as Twist'N Write pencils.



There are several styles to choose from.

Pencils and Pens can be purchased at local stores near you including Staples, Office Depot and a few other stores or
can also be purchased online.


The second handwriting strategy that parents speak highly
of who have a child with ACC is Handwriting Without Tears.



Handwriting Without Tears was created by a mom,
Jan Olsen
, who is also an Occupational Therapist.
Jan's mission to help her own child learn handwriting
began in 1977.

You can read more about the history and mission behind Handwriting Without Tears.

Handwriting Without Tears is a hands-on approach to
learning using multisensory methods to help teach
handwriting. Many kids who have Agenesis of the Corpus
Callosum respond very well to a multisensory approach
to learning and the ability to learn through a hands-on
style.

Check out a video of a child and his teacher using one of
the hands-on methods to help teach capital letters:



View more video demos of Handwriting Without Tears.

Your child's school may already have access to
Handwriting Without Tears. If your child is struggling with
handwriting check with your child's school to see if this
educational teaching tool to help promote handwriting can
be incorporated into your child's educational program. And
if your child has an Individualized Education Plan (IEP)
be sure to have it written directly into your child's IEP.




You may also want to check out the Back To School: ACC
documents
post for more educational information.

Sunday, August 29, 2010

Back To School: ACC documents




Kids and school and ACC.

This is a repost because Fall is right around
the corner and that means:



Below you will find a list of ACC Educational
documents that are available.

I will continue to add any new ACC documents
that pertain to education to this page so
they are all located in one place and easy to
find.

If you are aware of a helpful document about
ACC and Education please let me know by
leaving a comment or sending me an E-mail
so that I can add it here.


ACC EDUCATIONAL INFO:

Educational Suggestions For Children With ACC


“Considerations For Educators Of Students With ACC”:

Mr. McCallum wrote this document. He is a teacher
who taught a child with ACC in his classroom. He
offers detailed and valuable information.

If you would like to receive a copy of
“Considerations For Educators Of Students With ACC”
sent to your e-mail please send me an E-Mail request.

In your e-mail it is helpful to know if you are
a parent or a teacher requesting the information.



The ABC's of ACC - printable version

ACC Reading and Comprehension

Handwriting Help

ACC: Social Skills & Challenges

Neuropsychological Evaluation

ACC & Me Children’s Book

You can get a free copy of the ACC & Me book by
registering as a first-time member of the NODCC
(National Organization for Disorders of the Corpus Callosum). The book comes as part of the welcome packet. There is no fee, however, they do accept donations of any amount.


ACC: Learning Colors - printable version

Marvelous Music:
A Musical Pathway To Learning For Kids Who Have ACC


Teaching Resources

National Organization for Disorders of the Corpus Callosum

"Facts about Agenesis of the Corpus Callosum and other Diagnoses"
(NODCC) Printable PDF Brochures:
(give one to your child's teacher)

Disorders of the Corpus Callosum Brochure: English

Spanish brochure
Chinese brochure
French brochure
German brochure
Japanese brochure
Korean brochure


Monday, August 23, 2010

Live, Love, Laugh!




"A good laugh is sunshine in a house."
-Anonymous



Bugg is a beautiful boy who, aside from having
agenesis of the corpus callosum, has the most
wonderful, happy-spirited laugh that echos
from deep within his soul and touches the hearts
of others with resounding joy.

The Bugg's *Special* Life is a blog that I fell in
love with from the first time I read it and I
always look forward to reading each new post
that Bugg's Mama shares. She celebrates life in
all it's spectacular moments and wraps it in a
package filled with love (and laughter) and
family.


Dear Bree, "Bugg's Mama"

I am so thankful to be able to get to know you
through e-mail exchanges and through all of
the uplifting, encouraging, inspiring words and
pictures that you share on The Bugg's *Special*
Life.

You are a blessing and you let your light shine so
brightly
into the lives and hearts of so many people.

Thank you for allowing me to share Bugg's video
here for other people to see. ♥

Love,
Sandie - Matthew's Mama


"Laugh as much as you breathe and love as long as
you live."
--Anonymous




"A smile starts on the lips, A grin spreads to the eyes,
A chuckle comes from the belly,
But a good laugh bursts forth from the soul,
Overflows, and bubbles all around."
-- Carolyn Birmingham




Take a stroll through the Bugg's Life...



P.S. Bree, your house is undoubtedly filled with
super fantastic sunshine!



"The most wasted of all days is one without
laughter."
--e.e. cummings


view Bugg's original video blog post

"Laughter is the sun that drives winter from
the human face."

-Victor Hugo


photos and video courtesy of Bugg's Mama

Wednesday, August 18, 2010

ACC and Moms-To-Be #5 Story



This is the fifth story about ACC and Moms-To-Be.

Part of this story began as a letter that was originally
written back in June and given to me to pass on to a
Mom-To-Be who I was e-mailing with who had just
received the news that her baby has ACC. I asked
Katherine if she would consider sharing her story
here on the blog in the hopes that it could reach out
to even more Moms-To-Be. I recall Katherine's e-mail
response to me was that she immediately thought "YES!"

What you will read, that began as a letter to one
Mom-To-Be, turned into additional heartfelt feelings
and became Katherine's ACC and Moms-To-Be Story.

It is a privilege to be able to post her story here for you
to read. Thank you very much, Katherine, for sharing
a very personal part of your pregnancy and the emotions
that you endured with many more Moms-(and-Dads)-to-be.



Written by Katherine:

"I remember when I was getting a routine ultrasound,
and the docs noticed slightly enlarged ventricles
on our baby's brain, I had no idea the journey I
was embarking on. We went a few weeks just
monitoring the ventricles, having no idea I was
going to have a child with a disability! Things
like this just didn't happen to people like me.
How selfish and unaware I was to think that.
At that point, the "worse case scenario" was
possible hydrocephalus where the baby might need
a shunt after birth. Well, just to be safe, we
were sent for a fetal MRI, and everything changed.
Our docs went from being so positive and encouraging,
to total devastation and talks of termination. The
same people in the offices who were so happy at
every weigh in, giving our other daughter lollipops
and framing ultrasound pictures could barely look
me in the eye. Our little girl looked so perfect
on ultrasound - normal brain size, normal body,
all organs intact and functioning normally, normal
amnio, normal fetal EKG - was this diagnosis that
bad that more than 50% of people terminate? The
only intelligent questions we could think to ask
were, "what are the chances she could be normal."
And what we quickly learned was there is no clear
answer - anything they said was contradicted by
something we would read online. What one doctor
said would be contradicted by what another said.
It seemed like nobody really knew anything - and
playing the odds was not recommended. The
conversation always circled around to termination.
I had a doctor rub my back while I was sobbing in
his office and he said, "don't worry, you can have
more children and we will just put this behind you."

At 31 weeks pregnant, I turned to the ACC list serv
as part of my research. I was devouring information
so that I could make an intelligent "decision" on
whether to terminate or not. I would stay up all
night reading and reading, then report my findings
back to my family. We would argue, cry, discuss and
debate everything I read. We would change positions
in a single conversation - it was tortuous! The
list serve was the only place where I was able to
speak with real parents, real children and see actual
kids with ACC. I wanted to see pics of kids with
ACC - that might sound superficial but I had no idea
what to expect! One Mom sent me pics of her 6 week
old son - and I passed it to my whole family - and I
kept saying to everyone, "look at how normal this kid
looks - how can he be missing this part of his brain?"
I remember one of my first posts was asking if our
daughter would cry like a normal baby, would she be
in the normal nursery, would we be able to hold her?
The answers I received and support changed my life
forever - and in a way, helped me to realize there
was no "decision" to make. ACC is not a diagnosis
worthy of termination. Just because Maggie's life
was going to be different or difficult, was not
grounds to end it.

I am a Catholic woman who never would have thought
I would consider terminating a pregnancy but that is
the situation I found myself in - it was the darkest
moment of my life and one in which I believe God
stretched out His hand and lifted me from. I prayed
daily that God would take this decision from me -
that if she was to have life, that He give it to her.
And if she was not to be of this earth, that He take
her now. Well, after all of my research we just
could not go through with termination and decided to
stop talking about it. We were having a baby and
that was the end of it!

Maggie's birth was a beautiful experience, and she
cried a gorgeous normal infant cry. She had a head
ultrasound after birth which showed no hydrocephalus
She breast fed like a champ and went home just like a
typical infant! She hit all her first year milestones,
some delayed and some early.

Maggie is the light of our lives. She is our second
daughter, and I don't know how I would ever explain
to our older daughter that we terminated her sister
because she was not "perfect." We live in a society
where we want to fix everything - and if it is not
the way we want/expect, we have to do whatever it
takes to get back on track. Well, having a child
with ACC changed the course of my life - and I liked
my life before! I did not want to change course!
But thank God we did - because this has been the
most amazing, beautiful and inspirational journey
of my life. That is not to say our lives are not
filled with worry and stress at times. ACC is a
"wait and see" diagnosis and we know that Maggie's
development can change at any time - she could
develop seizures, learning disabilities, etc. We
just take life one step at a time and celebrate
everything she can do - which right now is everything
and anything she puts her little mind to! Her
neurologist said to us at her one year check-up,
"there is no reason to think her functioning will
be limited in any way. It appears at this time
that she will lead a typical life."

It is my hope that more doctors will be comfortable
discussing positive stories about ACC. I believe
they discuss termination and worst case scenario
because they do not know a lot about it and we fear
the unknown, and they are nervous about litigation
since ACC is wait and see. If they do not counsel
termination, and you have a more severe case, you
could then sue them for wrongful birth or wrongful
life. The period of time from diagnosis prenatally
and birth should be spent preparing and getting used
to your new reality - mourning what you had previously
hoped and dreamed and developing new dreams, making
new expectations. It should not be spent making a
"decision."

Education and research will help to shed much needed
light on ACC so that other parents are not faced with
these types of decisions - so that they do not terminate
a child like Maggie. When I think that her life might
not have been, I get chills. I mean who I am to have
prevented her life to never be? I am her mother and
I could have taken her life? I was put here to give
her life! I could not imagine this world without her."



1 year old Maggie and her big sister


There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.


I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Sunday, August 15, 2010

Stories2Learn - Social Stories



Did you watch the video?

That's all it took to spark my interest and within a
couple minutes I was enthusiastically exploring more
about the Stories2Learn application "app" to make social
stories for my child, Matthew, who has Agenesis of the
Corpus Callosum.

"Create personalized stories using photos, text and
audio messages."


"Stories2Learn works with iPhone, iPod Touch or iPad."


Price: $13.99

"Stories2Learn
was developed by an educational team
consisting of teachers, a speech therapist, and a
school psychologist specializing in educating
individuals with communication challenges."

For about the cost of one book in the bookstore you can
have an endless library of personalized possibilities
to create for your child or student that meet their very
specific needs to help with: social skills stories, daily
schedules, teachable stories and so much more...that
enable photos, your own text and audio messages that you
personally record on each page.

Stories2Learn Tutorial movie download

Note: video tutorial takes several minutes to download





You write the story from the first personalized
page to the last. And, you can easily edit any page
any time...from pictures, to text and recorded
messages. You can also add more pages or delete
pages in the story. Plus you can keep on adding
new stories.





When you click on "My Stories" you will go to a screen
that says "View Stories". There you will find a list of
all of the stories you made. You can easily view a story by
clicking on the picture icon and story name.




After reading reviews about Stories2Learn and watching
the video of Leo's social story I went directly to itunes
and purchased Stories2Learn so I can use it with my child,
Matthew, who has complete Agenesis of the Corpus Callosum.

It wasn't too difficult to figure out. Within a fairly
short time after buying it I had my first personalized
story about our family beach trips up and running on
Matthew's iPod Touch for him to watch and listen to.

The story page has touchable arrows on each side of the
page that give the person an opportunity to go back to
view the previous page in the story and listen to it again
or go forward to see and hear the next page.

here's two of the 14 pages I made for Matthew:



Very quickly Matthew learned how to flip through the
pages and tap the picture to make it 'talk'.



He likes it.

And he's already watched "Matthew Goes to the Beach"
several times today.

The first time I recorded a story on Matthew's iPod
Touch, using the external microphone that came with
the iPod, it was very quiet and could barely be heard.
I was disappointed and thought that was the end of that.
But then I gave it another try and held the external
mic VERY close to my mouth while speaking the words
for each page. Worked like a charm and made a big
difference in the sound volume. Plus, I put Matthew's
iPod Touch inside his iMainGo2 speaker case so it
gets an even bigger boost of volume and works great.

Stories2Learn comes preloaded with one social story
that includes two kids playing a game and taking turns.



Many kids who have Agenesis of the Corpus Callosum
learn best through A LOT of repetition and this "app"
allows a person to see and touch the picture over and
over to hear the audio message as many times as they
want and need to hear it out loud--something my own
child did immediately upon trying out his new story.

Stories2Learn has opened up endless possbilities for
me in terms of helping teach Matthew specific skills
that he is working on learning and it gives me the
ability to completely personalize the entire story with
pictures, text on each page and we can record messages
with my voice, dad's voice, a friend's voice or a family
member's voice to turn the story into a meaningful
forwards, backwards, say it again...(and again)...
teachable video-like book that is lots of fun.

I can foresee using Stories2Learn as a tool to help
teach my child independent skills like "using the potty",
"brushing teeth" and.....a whole lot more!!

Thank you very much Look2Learn.com, the creator of
Stories2Learn, for creating a fantastically fun
teaching tool.

I'm excited about it and I can't wait to personalize
more learning stories for Matthew that meet his
specific needs.

I'm also seriously considering the idea of upgrading
to an iPad for Matthew?!?

Stories2Learn is a terrific on-the-go library of
learning fun for use with the iPod Touch, iPhone or iPad.

So what do you think?

Does it spark your interest and creativity for use
with your child or a student to help with social
skills stories, teachable stories, daily schedules
or anything else?


Many kids who have agenesis of the corpus callosum
have challenges with social skills. Receiving
social skills training in school or in the community
from a trained professional and the use of social stories
can be valuable tools to help a person who has ACC
learn and practice social skills.

Video about ACC and Social Skills

Tuesday, August 10, 2010

NODCC Conference Thoughts



This year the NODCC held their annual Conference
in Santa Clara, California at the Marriott Hotel
on July 31, 2010 to August 1, 2010.

If you haven't been to a Conference before, it's
always fun and exciting to hear all about the
Conference from other people who attended so that
you can get a better idea for what goes on.

And for those of you who have a baby or toddler with
Agenesis of the Corpus Callosum who have not been
to a Conference who have some fear or apprehension
about what to expect at a first-time Conference I
think you will enjoy getting a glimpse of the Conference
through the eyes of Jessi, the Mom of one-year-old
Samuel, who graciously gave permission for me to share
her viewpoint of the Conference here for you to read.
♥ thank you very much, Jessi ♥



Samuel's Mom wrote:


"We just arrived home from our trip to California,
and what a trip it was! We really had so many
amazing experiences, starting with our time at the
NODCC Conference (National Organization for Disorders
of the Corpus Callosum).

I am not sure what I was expecting going into the
conference, but it was certainly better than whatever
my expectations were, and it was just what I needed.
There were families from all over the world (we met a
nice woman from Iceland and a couple from Australia).
There were children of all ages that had a disorder
of the corpus callosum. Some had complete agenesis
like Samuel, meaning no corpus callosum formed, and
others had partial agenesis or hypoplasia. There were
lectures that focused on educational strategies,
speech and language development, sharing the diagnosis
with your child, social development, current research,
and much more! I really enjoyed discussion groups for
parents, as I came away feeling understood, hopeful,
and more prepared for issues that may come down the
road. Getting to know other families was a big highlight
for me. Talking to other parents with the same issues
and concerns, and also getting suggestions was so
helpful. I really believe we made lasting friendships,
which will be so wonderful for Samuel as he grows and
for us as well.

Coming to this conference made me more aware of how I
had been thinking about Samuel... desperately hoping
that he would reach every milestone "on time" and
basically still be "normal" despite his diagnosis.
Meeting so many people with special needs kids and
their openness and positive attitude, made me realize
that I do Samuel a disservice by comparing to the
"normal". The truth is, his brain is different! I can
say that now without feeling sad or overwhelmed. I need
to be honest with myself and others about his ACC,
because Samuel has his very own timeline for development,
and he has special needs to help him achieve his goals.
He may very well go on to do "normal" things in his life,
but if he does, it won't be without a lot of work and
persistence on his part, and that should never go
unnoticed!

I was told over and over at the conference to never
put limitations on kids with ACC. Push them to succeed!
They can do much more than we think possible. It may
take them longer, but they will get there. At the same
time, understand that there will be things that may be
more difficult for them. When they have worked to their
ability with one thing, move on to something else where
they will have success! I know that is very broad, but
it encouraged me that Samuel will have great victories
in his life (I knew that already, but it was cool to
hear real life success stories and meet adults living
with ACC!).

So my main take-away was really two things, a mix of
realism and hope... first to let go of "normal" by
accepting and acknowledging that Samuel's brain is
functioning differently. Secondly, although that is true,
his brain is amazing and is capable of learning and
growing and re-routing pathways to help him make
connections...so there is truly nothing impossible for
Samuel! Wahoo. :)

I just want to recount a favorite memory of mine from
the weekend. It was Saturday evening and after dinner
there was a dance with a DJ. As soon as the music started,
kids starting pouring onto the dance floor. There were
little ones, some even using walkers or wheelchairs, and
there were teenagers and young adults. Everyone was just
having a blast. I had a flood of happiness watching these
children have the time of their life. I could just imagine
Samuel one day dancing with his conference buddies years
from now. I came into the conference fearing that it would
feel like doom and gloom, and instead I came away so
touched to see other children just having a great time
being kids. I will cherish that memory for always.

I don't have many pictures to show for the conference,
as we were too busy! But here are a few...

Samuel getting really close to standing on his own
(which he later did for 3 whole seconds!)


Samuel's first taste of Ghirardelli ice cream...
don't worry, it was only a taste! :)"


And if you're wondering, like I was, if Samuel
liked his ice cream...here's the video answer.

See more of Jessi's pictures from the
Conference and also some family pictures in
San Francisco after the Conference.

"I came into the conference fearing that it would
feel like doom and gloom, and instead I came away
so touched to see other children just having a great
time being kids."
reprinted with permission The Von Banks

Did you attend the Conference?

National Organization for Disorders of the Corpus Callosum

2010 Conference Schedule
Note: Conference Schedule is found on pages 22-25 at link above. Page may take a few minutes to load.