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

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.


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."

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

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*

You are a blessing and you let your light shine so
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. ♥

Sandie - Matthew's Mama

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

"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
--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

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:

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

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

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, 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

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 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'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.

Monday, August 2, 2010

Video about ACC and Social Skills

Dr. Lynn K. Paul interviews the boy who has Agenesis
of the Corpus Callosum in the video.

Dr. Lynn Paul is the founding President of the National
Organization for Disorders of the Corpus Callosum

(NODCC). She is also one of the kindest, most caring
people I have met.

At a Conference in 2001 I watched Lynn Paul lead a panel
of kids who have ACC and then a panel of adults who have
ACC in a questions-answers session that was extremely
interesting and very eye-opening.

Not only is Dr. Lynn Paul a highly professional researcher
on the corpus callosum at Caltech, she is also genuinely
and naturally skilled in interacting with people of all

The video focuses on the social aspect of Agenesis
of the Corpus Callosum and gives insight from Tony (the
boy in the video) and his dad and stepmom's perspective.

ACC Social Skills & Challenges

This article was written with the help and input from
many parents who have a child with Agenesis of the
Corpus Callosum.

Request a copy of this document