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"?

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.

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

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.

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

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

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.