Steve's Story - An Adult with ACC

Canberra, Australia


"Hi - I'm Steve, from Canberra, Australia. My
story is pretty straightforward. I went through
62 years of life in blissful ignorance that I
was missing most of my corpus callosum.
(I hadn't even heard of the corpus callosum).
I grew up near Brisbane, in Queensland,
Australia, went to school there and University
in Brisbane, then joined the Australian Public
Service in Canberra. I got married and have 3
children and 2 grandchildren so far. I worked
in a few different Departments, and got to be in
the Senior Executive Service before I retired.
Then I became a consultant for a few years before
finally stopping work a couple of years ago.

About this time, I needed a pretty standard
operation on my sinuses, and had a CAT scan of
them beforehand. This showed what the radiologist
tactfully described as an "anomaly" further back
in my head - and led to an MRI. This showed a
large (35mmx35mmx23mm) interhemispheric lipoma
(a benign (hopefully!) tumour where the corpus
callosum should be, and a very small number of
corpus callosum cells remaining - hence the
diagnosis of "hypogenesis" - ie underdevelopment
of the CC. I have no symptoms. The thing is being
monitored by MRI every couple of years to see if
there is any change.

The issue for me is whether the lipoma is stable
or growing. If stable, I don't really have anything
to worry about - at least until I'm really old, as
I understand it. If it is growing, on the other
hand, it will put increasing pressure on other
parts of the brain, presumably with nasty
consequences. Then if it is not really benign,
but malignant, the nasty consequences will be
a lot worse and will come a lot earlier, I expect.
The neurosurgeon told me that the only way to
really tell if something was malignant or not
was to take a biopsy, involving drilling into
the middle of my brain. I passed on that one!
Hopefully, if the MRI's show no change, I will
be able to have them less frequently and carry
on life as usual.

For those of you with kids with disorders of the
corpus callosum, perhaps one lesson from my
experience is that the disorder does not
necessarily lead to identifiable symptoms.
Looking back, I can see that I could relate a
number of things to my HCC - for example I am
not very well coordinated (poor at ball games etc)-
but then there are lots of people with suboptimal
coordination who presumably have complete CCs, so
I'm not even sure I can blame my HCC for that.

I think I have answered most of Sandie's list of
questions, but I'll make a couple of additional
comments on some of them. I was only an average
school student, and struggled most with abstract
subjects like Maths. I did much better with
subjects that relied more on memory like English
and History. I am not a gregarious person, but
get along well with people generally. Now that I
am no longer working, I enjoy my family, travel,
volunteering, and active pursuits like bushwalking
(hiking) and sailing.

I am very fortunate that my HCC doesn't affect my
day to day life. All I have to do is keep an eye
on that damn lipoma!

I hope that my story shows that it is possible to
have a CC disorder and (probably with a degree of
luck) still lead an happy and fulfilling lifestyle.

Steve
65, Canberra, Australia, Interhemispheric Lipoma
and Hypogenesis of the Corpus Callosum"


Thank you very much, Steve.

I am thrilled and also honored to be able to
post Steve's Story here for others to read. I
asked Steve if he would be willing to tell his
story because what he shares offers hope to
others and he represents a piece of the corpus
callosum disorder puzzle that you don't often
hear about.

Want to share your story?
Invitation for Adults with ACC

Finding the Answer....

Last summer I was standing at my sliding glass
door looking out into my backyard when I spotted
a lemon yellow, very out of the ordinary bird
at the top of my plum tree.

I stood in awe gazing from inside my house at the
beautiful birds (there was actually a pair of them).

I was torn to run and get my camera yet did not
want to miss one second of seeing them with my
eyes.

Do I run?

What if I run to get the camera and the birds
fly off?

Gazing at the birds sitting on branches in the
plum tree, primping...then moving to other
branches was amazing.

And I was alone with nobody to tell or say...

'Hey look at those YELLOW birds in the plum tree.

'Have you ever seen a bird like it?'

Ohhhh, I needed a picture.

So off I RAN to the other room to grab my camera
out of the drawer...............

running back to my perch at the sliding glass door.

Ahhh, there they were.

Two yellow birds complete with red heads and
black wings.

STILL IN MY PLUM TREE.

I had time to snap about three quick pictures
through the glass door (not daring to open the
door lest I scare the birds off).

Then like butterflies in flight...the pair of
lemon beauties floated off through the sky out
of my sight.

I wondered for days what kind of birds they were.

I was on a mission.

I searched the internet.

I talked about the birds and told my family all
about them.

Unfortunately, I could not figure out what kind
of birds they were.

Eventually I stopped trying and no longer thought
about it.

That was a year ago.

Last week my sister came over for a visit and she
gave me a surprise gift certificate to a favorite
store of ours.

I was really looking forward to using the gift
certificate and wondered what I could buy with it.

So later that night I went online and looked
up the store.

The store website came up but before I could
browse through more than a few clicks I saw a
picture of a yellow bird SO SIMILAR to the pair
of birds in my plum tree last year.

The excitement began!!

I just had to explore it more so I clicked on the
picture of the bird. Upon a closer view it looked
nearly the same but it didn't have a red head.

I kept clicking on the other pictures of yellow
birds.....because now that I had gotten so close
I was determined to find out what kind of bird
was in my backyard.

Then there it was!

I found it!!

The lucky lemon yellow beauty appeared before my
eyes and finally

(after one year)

I had an answer:

The bird was a Western Tanager:



Now you may wonder why I am posting this story on
the ACC blog but I assure you there is a message
here.

After having finally found the name of the exquisite,
unusual yellow birds that I was privileged to see in
my own backyard, I realized how similar it is to
finding ways to teach my child, Matthew, who has ACC.

There are times when I have tried and tried to figure
out how to teach Matthew something but no matter
how much I try the answer doesn't come.

But after I put the goal on the backburner and
move on to other things, when I least expect it,
(often months or more later) and much to my surprise
I realize that he learned the very thing that I
had been trying to teach him earlier.

We had simply stumbled upon the teaching method
without even trying while doing other things.

It just appeared as easily as can be and flowed like
a river.

Of course we parents of kids who have Agenesis of
the Corpus Callosum realize that there is a big
variety of scenarios for how to teach our kids the
MANY things that they are working on learning.

I am convinced though that sometimes there are
those times when we simply put it on the backburner,
move on to the next thing and let the natural flow
of life and learning take place.

A to Z Talking Mouth video

My child, Matthew, who has complete Agenesis
of the Corpus Callosum has always been mesmerized
by watching my mouth move very slowly to form a
sound and simple word. Matthew is non-verbal.

Equally as fascinating for him is his own
reflection in a mirror while watching his
mouth move and make sounds.

For Matthew, this particular approach to
learning verbal sounds and words is what works
and what he is highly motivated by.

In fact, his very first word he ever said
(at 7 years of age) was learned by watching
his reflection in the window of our car when
I would pick him up every day from school.

Each day we would walk out to the car and stand
in front of his window while he watched my
reflection in the car window slowly saying the
word "bye bye" and also watching his own
reflection while trying to say the word.

This ritual took him one year of trying and
practicing but one day it clicked and he actually
SAID "buh bye" all by himself.

The other night I stumbled upon a children's
online educational video about Nature Alphabet
with a talking mouth.

I was thrilled!! I couldn't wait to show it to
Matthew.

I showed it to him last night. He sat in front
of the computer completely mesmerized watching
the talking mouth make sounds and words.

He was fascinated!




When the A to Z Alphabet talking mouth movie ended
Matthew signed "more" and watched it a second time.
It didn't stop there though. He actually watched
this video THREE times in a row.

I interacted with him throughout the video helping
to encourage sounds and I was astonished at the
incredible accomplishments that Matthew made.

He said "Ahh" twice for Apple. Then he signed "Apple".

He said the "Sssss" sound for the first time ever!

He also said the "huhhh" sound for H for the first
time!

I was just watching and was blown away seeing this
take place right before my eyes. I called his dad
in the room to have a look.

Then Matthew SAID "Mmmmmm" "oooooouuu" for Moon
and made the sign for "Moon" It was the first time
ever he actually put the mmmm and ooouu sounds
together. He has always only said "mmmmm" for moon.

He tried making so many sounds and did a lot of
blowing in an attempt to make the different sounds.

You could just watch him intently thinking, then
trying to make a sound.

He attempted to say the word "Yellow" with a
short "uh" then a faster "ya ya ya ya"

He also made an "Sssss" like sound while
listening to the "Zeee" sound for Zebra.

I even heard what sounded like a "tuh" sound
for "T".

It's truly magical when you find a learning
tool that speaks to your child on a motivational
level and matches their learning style as well.

On a sidenote, yes there are some words in the
video that are not typical of beginning alphabet
pictures or words. However, the video is based
on nature and the words chosen reflect this
topic.

The talking mouth is a huge hit in our house and
I can't wait for Matthew to watch this video again.

iPhone/iPod Touch Augmentative Communication

Proloquo2Go:



What's Proloquo2Go?

That's what I thought when I started hearing about
a new application for augmentative communication
available through an 'itunes App' that works with the
iPod Touch and iPhone.



What sparked my interest in Proloquo2Go is the fact
that the communication application downloads to a
device (iPhone or iPod Touch) that is so portable
and can easily go with you anywhere.

Hence, my child, Matthew, who has Agenesis of the
Corpus Callosum, and who is non-verbal can now take
his very cool iPod Touch with him anywhere he
goes and use it to 'talk'.

We explored whether or not to buy the iPod Touch
or the iPhone but in the end it came down to I
don't need another cell phone and Matthew doesn't
use cell phones. For Matthew, we chose the
iPod Touch 3rd generation 32 GB. This way we don't
end up having a monthly cell phone bill and he won't
mess with dialing phone numbers to who knows
where.

Oh, we still have our large communication device
that Matthew uses at home that cost nearly $8,000
and we love it.

But, now we have solved the disappointment that
I had with the large communication device not
being functional for carrying around with him or
taking easily outside of our home.

After all, when someone is non-verbal and they
use an augmentative communication device to help
express themselves...that device should go easily
and effortlessly with them anywhere just like
anyone else who does have a 'voice', I think.

As for the cost of Proloquo2Go...it's a fabulous
$189.99! This is an affordable way to give our
child, Matthew, a voice and allow him to have his
voice with him anywhere he goes.

When you use the iPod Touch and Proloquo2Go
you will want to buy an external speaker for it.
Even though our iPod Touch has a built-in speaker
it is too quiet to hear it well, even at the maximum
volume level. If you were out in public or in a busy
restaurant you would not be able to hear the device.

We chose to buy the iMainGo2 external speakers
for Matthew because it comes with a zippered
case that protects the iPod Touch. The front of the
iPod Touch is seen but covered with clear plastic to
protect the screen.

Front view of iMainGo2 speaker system and case:


Back view of iMainGo2 speaker system and case:

CNET review for iMainGo2 speaker system and case


Want a better idea of what Proloquo2Go augmentative
communication has to offer?

Check out a few of their tutorial videos:








Proloquo2Go, we think you're pretty terrific!!

Thank you Proloquo2Go for making it possible for
my child who has Agenesis of the Corpus Callosum
and who is non-verbal to have a voice with him
everywhere he goes and for making it at a cost that
is affordable.

Have you been considering getting an augmentative
communication for your iPhone or iPod Touch?

I encourage you to explore Proloquo2Go and see
if it may be an option for your child who would
benefit from an easy and very portable augmentative
communication device that is ultra cool for a kid
to carry and use.

Below are some of the links that I used while
exploring to help you get started on your own
exploration of Proloquo2Go:

TUAW Proloquo2Go Review

About Proloquo2Go


Proloquo2Go Frequently Asked Questions (FAQ)

Proloquo2Go Manual

Proloquo2Go on Facebook Questions and Answers

uquery.com Reviews

iPod Touch in the News-helps autistic kids learn to speak, communicate

Talk to your child's Speech and Language Pathologist
(SLP) to see if Proloquo2Go might be an option for your
child's particular needs and abilities. The SLP may
even have a copy of Proloquo2Go so that your child
would be able to try it out during a therapy session.

Please be aware that there are resource centers
available in some states that may be able to loan
Proloquo2Go for your child to test before you make
any purchase.

Proloquo2Go offers a link to Resource Centers in the United States, Canada, Latin America and Europe.
If your state doesn't list a resource center available
on the above links to borrow or try Proloquo2Go,
consider looking for other resource centers available
in your state.

For example, In Oregon where we live, we have OTAP which stands for Oregon Technology Assistance Program.
OTAP has a Loan Library with numerous augmentative communication devices to borrow on a trial basis.

A perk with having the iPod Touch for Matthew is that
I am able to download kids Apps from itunes to his iPod.

He has always loved "The Three Little Pigs" story.
It's his favorite. Well, last night I spent time exploring
and reading reviews on itunes and I found what I hoped
would be the perfect "Three Little Pigs" story for Matthew.



Happily, I can tell you that it was a huge hit. Matthew
sat in his room last night with his iPod Touch watching
the very adorable Three Little Pigs story written by
Kidztory.

He can touch the pigs and they make piggy snorts.
He thinks it's funny and frankly so do I. It's the
greatest feeling to see my child sitting on the floor
of his room actually using an iPod, learning how to
use it from what I am showing him, figuring out things
for himself...and having fun.

Matthew loves books but he doesn't point to pictures
in a regular book when I ask him to find the pig or
ball or apple or other familiar items even though he
knows what a ball, apple, pig and other pictures are.

He is very much a visual + auditory learner. Matthew
has always been motivated by cause and effect toys.
Matthew needs to see a picture, push a button and hear
the word or sound. He also needs this means for
expression of his knowledge.

Now, while using the iPod Touch, he instantly touches
the "pig" when I ask him "Where is the pig?" or
"Touch the pig".

With the iPod Touch, Matthew is not only able to use it
as a augmentative communication 'voice' through the use
of Proloquo2Go but he is also able to learn and express
his knowledge through the use of kids educational
applications or "apps" available for download through
itunes.

I am excited about this newfound path that will help
Matthew make progress in his educational learning
process. I can't wait to go explore more educational
apps in itunes to meet Matthew's educational needs.

Note: Agenesis of the Corpus Callosum is a congenital defect.
A child who has ACC (or a corpus callosum disorder) is born with it.
Agenesis = missing or absent. Therefore, a child who has ACC is
completely missing their corpus callosum. The corpus callosum is
the largest commissural pathway in the brain consisting of over
200 million nerve fibers and allows for communication between the
two hemispheres of the brain. Agenesis of the Corpus Callosum has
a very broad range of how it can affect a person.

I do not endorse or receive any monetary benefit from Proloquo2Go or other website companies mentioned. The Proloquo2Go and iPod Touch are based solely on my child's own specific needs and were purchased by us through our own out-of-pocket expense.

Educational Documents

Kids and school and ACC.

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” please
E-Mail me.
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

ACC Reading and Comprehension

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

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

Teaching Resources

The Uncertain Road...

While browsing through the archives of an
Agenesis Corpus Callosum support group that
I belong to I came across some messages that
I had written in the past about my child,
Matthew, ACC and my feelings.

I contemplated whether or not to share some
of my past personal feelings here for others
to view.

After careful consideration, I decided
to give it a go in the hopes that it might
help someone.

This particular post from the past is
something I wrote when my child was 7 1/2
years old. It was written in response to
the parent of a baby with ACC.


September 5, 2001

"I just read your e-mail and sympathize with your
frustration and confusion. I am also a parent of
a child with complete ACC. My little boy was
diagnosed with ACC when he was four months old.
I was beginning to question his development before
he was diagnosed just a little bit. I remember
asking some of my friends about when their kids
rolled over because Mathew was not yet even
beginning to come close to rolling over....but I
never imgained that he would have this rare and
baffling condition when his pediatrician ordered
a CT scan. It was shocking and needless to say...
my world turned upside down.

You wrote something that I think every one of
us parents can relate to....

"Wait and see what is gonna happen.
You know it really makes me
crazy knowing that everything
could be okay ---- but no, wait ----
he could have major problems."

I am quite sure that most every parent wishes
that there was some magical type of test that
could reveal EXACTLY what they could expect in
terms of how ACC will affect their child.

When Matthew had his first EEG to rule out any
seizure activity and the results were negative
indicating that he did not show any signs of
abnormal brain activity or seizures I felt
relieved...and THEN...I was told that he is still
at risk for seizures happening so it was like the
good news was once again said with the frustrating
news on top of it. For me, the wait and see,
the wondering, the unanswered questions were
incredibly difficult to deal with.

In the beginning of my son's diagnosis and
numerous doctor appointments....I was also a
wreck. I did not like going to his doctor
appointments either..mostly because I did not
want to hear one more thing that was wrong
with him.

When I was at his developmental evaluation...
he was having his ears tested because ACC can
affect their hearing. I remember the doctor
coming back in the room and telling me that
they suspect hearing loss in Matthew's right ear
and INSTANTLY I thought to myself...NO WAY!! I
didn't believe it and didn't even want to hear it.
I just shut him out and wasn't going to believe
what I just heard. After testing by an (ENT)
ear, nose and throat doctor...Matthew was found
to have fluid behind his ear...which was drained
and a tube was put in his right ear only.
They did an elaborate hearing test called an
ABR (auditory brainstem response) and Matthew's
hearing tested normal in his right ear and left
ear. It was a huge relief. I was very happy to
find out such good news...and needed to hear
those good things. Those good things can so easily
be crowded out by the other not so good news.

In the beginning of Matthew's diagnosis I would
sometimes want to read and know information about
it....and then other days I didn't want to think
about it. I was apprehensive in talking to other
parents. I was so scared I would hear something
else that MIGHT happen as a result of ACC...
and it scared me. I had trouble reading about
other children who had really severe problems
who had ACC. I think everyone is different
in how they deal with the news of ACC or with
the news of any type of condition or major problem.
You will know what is right for you and you
might go through days of needing to know more
information and days of blocking it all out and
not wanting to hear, think or see anything else
about it.

I found it helpful to have a developmental
pediatrician to talk with concerning Matthew's
condition. We are lucky to live very close to a
teaching hospital in Oregon
(Oregon Health Sciences University) and they
already knew of Matthew's condition and had seen
other patients with ACC.

I have found therapy services to be a great
benefit for Matthew. I chose to put Matthew in
physical therapy when he was six months old. He
also wasn't reaching for toys yet. I began
receiving Early Intervention services through
the county and they were very helpful in showing
me ways to encourage and help him reach for toys
and other things. We would roll up towels and
put them under each of Matthew's arms while he
layed on his back. Then I had one of those baby
gyms with hanging toys and the elevating of his
arms REALLY helped in giving him a little bit
of an advantage and he began to use his arms to
reach for the toys. Early Intervention therapists
come into your home and work with the child and
there is no charge.

I think that therapy indicates that there is
some kind of problem...and admitting that there
might be or is a problem is not always easy to do.
I wanted to believe that Matthew would not be
affected by the ACC.
I went through MANY emotions....so many emotions.

The hardest part is the "wait and see"....and
while it is INCREDIBLY difficult right now....
I can tell you that it does get better with
time...it does."



Sandie

*Mommy to 7 1/2 year old Matthew with ACC in
Oregon (USA)*

So Sweet...

The thought of sending your little one off to
pre-school evokes many emotions.

But when you are the parent of a child with
special needs the thought of your child going
to pre-school can be incredibly difficult.

I came across an oh so sweet story about a
little boy who has Agenesis of the Corpus
Callosum and a few other medical conditions
and it touched my heart.

His Mama shares from her heart how she felt
about her little one and the thought of pre-school.

Flashback Flying

By the way, go ahead and check out the rest
of her blog too....it's filled with super
sweet stories that will put a smile on your
face and bring a tear or two to your eyes.

Celebrating the Bugg's *Special* Life

Another one of my favorites that Bugg's Mama
wrote (and I can relate to) is:

Getting Groceries With The Twins

Isn't Bugg just the sweetest little boy
with a big, happy smile?

His Mama tells the story of his birth
and finding out about ACC...

We Welcome Bugg

Thank you Bugg's Mama for sharing your
sweet stories about Bugg and your whole
family.

I just love this beautiful blog...it's
full of love and it makes me smile.