Monday, January 24, 2011

ACC and Moms-To-Be #8 Story

I was recently contacted by the mom of a little
boy who has Agenesis of the Corpus Callosum who
expressed her desire to tell her own Mom-to-Be
Story about receiving the diagnosis of ACC when
she was pregnant.

This Mom shared something with her own

"I am very passionate about helping others and encouraging
others through those hard times."

Thank you very much, Brandy. I am so grateful to
you for your passion to help others, for your
willingness to reach out to people in need and for
allowing me to post your ACC Pregnancy Story.

Written by Brandy:

My pregnancy with this child (child #2 for me) was
never really normal. It started off rough as I had
started to bleed early on during my pregnancy. I
felt in my heart that I was losing my baby. However,
my baby was a fighter and wasn't going anywhere!
After about the 10 week mark, I was taken off bedrest
and was able to resume normal activities. At 20 weeks,
I went in for my ultrasound. Like many others, I had
no idea that they actually checked for so much during
those ultrasounds! He was given a good checkup other
than he was a little on the small side and they wanted
to do a repeat ultrasound at 28 weeks just to check
his growth. Thinking everything would be normal
(this was my second child and my first child had no
issues at all), my husband went on his trip out of town
for work, leaving me to go alone for the ultrasound.
This was the first and only ultrasound that he had
ever missed with either of my kids. Everything
seemed ok during my appointment. The ultrasound
tech never said anything was unusual or made any
faces. She printed off my pictures and told me
that he was growing on schedule. She then told me
that she was going to put me in a room so that the
doctor could talk to me. My stomach sank. I knew
that this was not normal! The ultrasound showed
that his brain ventricles were enlarged. I had never
heard of ventricles in the brain! I asked the doctor
what all that meant. He was very upbeat and honest
with me. He wanted me to go to a maternal-fetal
doctor to be followed. I got an appointment the next
day. On my way home after hearing the news, I was
pretty numb. I didn't know what any of this meant.
I didn't cry, which was VERY unusual for me. I even
went to the grocery store on the way home. It
wasn't until I got home and called my best friend
that I broke down. My husband flew home the next
morning so that he could go to the specialist with

The specialist basically told me that same thing.
Hydrocephalus and he would need a shunt. I did
lots of research on hydrocephalus. Some days I
was worried and other days I wasn't. At 36 weeks,
I was sent to the children's hospital for a fetal
MRI. A big pregnant woman in a little bitty
MRI tube = MISERY! Anyway, the results came
back that he had Agenesis of the Corpus Callosum
(ACC) and not hydrocephalus. His ventricles were
enlarged but stable and not changing. I was told
that his ventricles weren't necessarily enlarged,
they had just taken on a different shape since
there was no corpus callosum.

I opted to have a c-section to deliver him.
My first delivery was vaginal and did not go
well at all. I also wanted to schedule his
delivery so that we could have all necessary
doctors on stand-by just in case we needed them.
The delivery turned out to go smooth. He did have
to go to the Neonatal Intensive Care Unit (NICU)
for a night to monitor his breathing (not related
to the ACC) but was allowed to spend the rest of
our stay with me in my room. While in the NICU,
they did an ultrasound of his head and it confirmed
the ACC diagnosis. He also had an EEG which came
back normal. He was having a little difficulty
eating and that prolonged our hospital stay
by a day, but he caught on like a champ
(and he is now the best eating child I have
ever seen!). The neurologist visited him in
the NICU and then came to see me. He gave me
the best piece of advice regarding the ACC.
He told me to learn all I can about ACC and then
to forget it - to treat him like I would treat
any other child. My son is now 3.5 years old
and he has taught me so much in his short life.

He first started showing physical delays when
he was a few months old. He did not sit until
he was nearly 8 months, crawled at 11 months,
and walked at 13.5 months. He had been in
physical therapy through our Early Intervention
program since he was 6 months old. He was
discharged from physical therapy around 14 months
since he was really thriving in that area once
he started to walk. From 14 months until
2.5 years he was in a little occupational
therapy through the Early Intervention program,
however he really needed speech more than
anything. We fought and struggled with our
Early Intervention program because they just
could not provide what he really needed.

Finally at 2.5 years old, we got into a
private therapy clinic and had a wonderful
speech therapist who made leaps and bounds
with him. At 3 he graduated out of the
Early Intervention and we enrolled him in the
special needs preschool through our school
system. I was very hesitant to make that move.
In fact, I had pretty much decided that I was
not going to send him to school at the age
of 3. However, I have a wonderful friend who
had been down this road with her son who had
similiar issues. She pushed me to enroll him
in the special needs school. Boy am I glad
I did!

Until Logan was about 2.5, he was nonverbal.
He would say "mama" and "dada" on occassion,
but basically nonverbal. He made huge
improvements with his speech therapist, but
the special needs school has REALLY made him
bloom. Just thinking of his three angel
teachers makes me tear up. He now has a
vocabulary of about 150-200 words and is
doing two to three words sentences, though
many of his words aren't really clear
(but we can understand him!)

He has a sweet personality. He is pretty
quiet in a group and is very well behaved,
but once he is at home, he really opens up!
His behavior is pretty much perfect,
especially for a 3 year old. But we are
having one big issue and that is he screams
when his dad is at home. He loves his dad
and wants to always be with him and play with
him, but for some reason he just screams.
When he is just with me (or anyone else) he
does not do the screaming. As for Logan's
"screaming"... it is the most high pitch noise
you can imagine to come out of a three year old.
If it happens in a store (ie. Walmart) you can
definitely hear him on the completely opposite
end of the store. It literally makes me feel
like my head is rattling. I can't really say
what prompts the screaming. It seems to me that
he wants his dad to do everything with him
(or for him is more like it!) and wants his dad
to do it right that second. I was talking with
my mom today, who babysits Logan sometimes. She
said it is just like a Jekyll/Hyde transformation.
Logan is about as perfectly behaved as a 3 year
old can be with her (and everyone except his dad).
Then when his dad walks in the room, he just starts
with this high pitch, stop-in-your-tracks scream.
I'm beginning to think it is a mixture of language
barrier frustration, being spoiled by his dad,
and just being a stubborn and impatient three
year old. It has by far been the must frustrating
bump we have faced on this road.

I love my son to pieces. He has taught me so
many lessons about life. If I had the chance,
I would not change him for the world!

3-year-old Logan

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.

Monday, January 17, 2011

ACC and Moms-To-Be #7 Story

Soon after posting the previous ACC Pregnancy Story,
I was contacted by another mom, Andrea, who has a
son who was born with Agenesis of the Corpus Callosum
and she expressed an interest in sharing her own story.

Several months ago I came across Andrea's blog about
her baby boy and I have been reading her blog posts
so it was a very nice surprise to get an e-mail from
Andrea, for the first time, and read about her desire
and willingness to tell a very private part of her
life in the hopes that it may help others and to let
them know "that they are not alone."
(in her own words)

It is truly a privilege to be able to post Andrea's
Pregnancy Story here for you to read.

Thank you very much, Andrea, for reaching out to
others from your heart.

Written by Andrea:

This pregnancy started off a little differently
from the very beginning. When I had discussed
with my OB-GYN that my husband and I were
thinking about trying to have baby #3, he went
ahead and sent me for some testing with a
high-risk maternal-fetal specialist due to the
fact that I had miscarried two times previously.
He didn’t want me to have to go through that a
third time before we did some testing to find
the cause. The initial testing showed that I
have a blood clotting disorder known as MTHFR,
which makes me prone to blood clots. So I was
put on a baby aspirin every day as well as 5
folic acid tablets per day. I also had to be
followed closely by the maternal-fetal specialist
throughout the pregnancy. This was actually a
blessing in disguise, because it’s this high
tech equipment and the highly-qualified
sonographer, who discovered Anderson’s ACC
before he was born.

We were so excited to find out whether or not
this 3rd child would be a boy. We already had
2 girls and while we would have loved another
girl just as much, my husband and I were hoping
for a boy. To be honest, I really thought that
was the main purpose of the 20 week ultrasound.
In fact, even though this was my 3rd child
(5th pregnancy), I didn’t realize how detailed
these ultrasounds are. I had no idea how many
things they check and measure. I mean, they
check for 3 bones in the baby’s pinkie finger!
Did you know that?

Throughout the ultrasound, we kept hearing the
sonographer ooh and ahh over our precious baby.
She kept saying how beautiful everything looked
and how wonderful the images were that she was
getting. She did reveal that the baby was a boy,
and we were overjoyed! It was about 10 minutes
later that her demeanor and voice both completely
changed all at once. She became quiet, concerned,
and intensely focused on something that she did
(or didn’t) see. She left the room, came back in
with another sonographer who then took her turn
looking at the screen, pointing to things on the
screen, and giving “looks” to the other lady.
Then they both left the room. At this point, my
husband and I both realized that something was
wrong, but we didn’t know what. All we knew,
was that they kept looking in the baby’s head at
his brain. The third time the lady came back
into the room, she told us that she was going
to put us in a room so the doctor could talk to
us and discuss the ultrasound results. I
stopped her mid-sentence and asked, “What is
going on? What is it that you are looking for
and can’t find? Or is there something you do
see that shouldn’t be there? We are completely
in the dark. We are scared. We need to know
what is happening.”

At this point, I hear the words “corpus callosum”
for the first time. I had no idea what it was,
or what it meant for my baby to not have it.
This is where my story really begins to differ
from that of others’. We were never told, nor
was it ever implied that we terminate the
pregnancy. In fact, at this first visit, quite
the opposite happened. When the doctor came
in to speak to us, she explained what the
corpus callosum is and what its job is in the
brain. She told us that the only effects of
not having one could be coordination problems
and possible seizures. I specifically asked
her what effects it would have cognitively on
the baby and she replied, “None at all.”

We actually left the visit feeling okay- not great,
but we still felt all would be fine. The doctor
told us that everything would be fine and more
than likely he would have no problems. It wasn’t
until I decided to do my own research that I
realized that this doctor had given me false
information. I began searching and searching
for anything I could find relating to ACC, and I
kept reading stories of people with ACC and it
didn’t take me long to realize 2 things: 1.
While all of the stories might share some
commonalities, each person with ACC is very
different. It is not a cookie-cutter diagnosis.
and 2. The doctor had not been completely honest
with my husband and me about the prognosis of
our baby.

I was outraged. I knew I could not continue
seeing a doctor who would not be up-front and
honest with me. I called my OB-GYN and told
them I wanted a 2nd opinion. They immediately
scheduled me an appointment with a different
group of doctors. In the meantime, we were
left to wait, to wonder, to worry, and to have
more questions than we had answers.

We received the letter in the mail to confirm
our appointment, along with the paperwork to fill
out for our first visit, and I noticed that I had
been made 2 appointments- 1 with the maternal fetal
specialist and the other with a geneticist for
“Genetic Counseling”. Keep in mind that at this
point my husband and I have not even accepted that
something is wrong with our baby. We are still
dreaming that when we go for the 2nd opinion the
ultrasound will reveal that this had all been a
mistake and the baby is doing well. Oh how we
prayed for the corpus callosum to be seen!

As you know from me typing our story, it wasn’t
there. However this doctor was much more open
with us. She wasn’t doom and gloom, but she would
present us with what she knew, and didn’t mind to
tell us that some things we would just have to
wait and see. We continued with this doctor the
remainder of the pregnancy.

As the pregnancy progressed, there was mention of
a small cyst, and also the fluid in the baby’s
ventricles was being monitored closely. However,
at each visit, the fluid stayed within the
“high-normal” range. Until the 34 week visit.
At this visit, the amount of fluid had increased
significantly- to the point that they were
concerned that the baby’s brain may be under
pressure. So it was decided to deliver the baby
via C-section at 37 weeks.

I was scared out of my mind the day of the
delivery. We still really didn’t know what to
expect. Would the baby have facial deformities?
Would he breathe okay? What problems would he
have when he was born? What about the fluid?
Will he need surgery for a shunt? There were
so many questions that couldn’t be answered
until he was out of my body and welcomed into
this world.

Anderson Knox Spears was delivered at 8:47 on
Tuesday, June 1, 2010, at a hefty 8 pounds and
2 ounces. Shortly after he was born, it was
determined that he was struggling to breathe
on his own and he was whisked away to the NICU
after I got one quick peek at him. I remember
that he was absolutely beautiful. I remember
the delivery being very peaceful. I remember
not being worried that they were taking him to
the NICU. I felt at peace with everything
now that he was here.

Later that night, I was wheeled to the NICU to
get to see my baby. I was not prepared for what
I saw. He seemed so fragile laying there with
all of the tubes and lines and machines. He
actually only ended up on a CPAP machine to help
his breathing, and he had a feeding tube in his
nose. He had an IV in his arm, and monitors on
his chest. He was in good condition, but to see
your newborn lying there helpless after delivering
2 healthy babies and getting to hold and love on
them immediately, there are really no words.

Anderson’s breathing condition had nothing to do
with his ACC. It had more to do with the fact
that he was born at 37 weeks and his lungs needed
a little more time.

While he was in the NICU, the testing began.
Chromosome testing, blood testing, MRI’s, xrays,
hearing tests, vision test, etc. Lots and lots of

It was determined that Anderson had hydrocephalus,
complete agenesis of the corpus callosum, and an
interhemispheric cyst. However, his chromosome
testing showed that he had no chromosomal

At exactly 1 week old, Anderson underwent surgery
to have his VP shunt placed. His shunt is actually
placed in the cyst- rather than in the ventricles
in his brain. Come to find out, the fluid that
they had been watching was not in a ventricle- it
was actually in the cyst. It appeared at first
that the cyst had actually grown in place of the
right hemisphere of his brain. However, as the
shunt continues to work properly and the cyst
gets smaller, more and more brain tissue is
appearing. Apparently it is there, it is merely
hidden by the large cyst. He tolerated the shunt
surgery so well, that we actually got to come
home the day after the surgery.

Still not knowing what to expect, our family
prayed, we loved, we rocked, and we treated him
like a normal baby. His 2 sisters absolutely
adore him, and they have been the best form of
interaction and stimulation that he could get.
Anderson began to amaze all of us as he grew.

He is now 7 months old and continues to amaze
everyone who knows him. In fact, he is even
amazing the doctors. When they see his MRI
results and then they look at him- the 2 don’t
fit together. He is doing things that right
after he was born we were told he would never do.
In fact, when he was 6 days old, a doctor told
us he would be severely delayed in all areas
and we should go ahead and file to put him on
disability. We told him we were not giving up
on him. We were going to give Anderson every
opportunity to be successful…and what a wonderful
decision that has been!

At his 6 month developmental check up, Anderson
was on an 8 month cognitive level, and on a 4 month
verbal and motor skills level. He is sitting up
unassisted, but he isn’t rolling very well. He
can do it, but not without lots of encouragement.
He is getting a head-shaping helmet this month-
because he would not lie on the right side of his
head due to his shunt so his head is misshapen.
He is talking (babbling) more and more each day.
We couldn’t be more pleased with how he is doing.
He is a true blessing to our family. He is
defeating the odds that are against him. We know
he may hit some obstacles, but we take each day at
a time and focus on what he CAN do, rather than
worry about what he WON’T be able to do.

If you are expecting and have received this
diagnosis, it is not the end. It is the beginning
of a very special journey. Anderson is a wonderful,
happy child who brings joy to everyone around him.
We can’t imagine our lives without him. The truth
is that the doctors really don’t know. Every
child/person is different. The doctors do not
have all the answers. We have found that our God
is much bigger and more powerful than the doctors.
He is allowing Anderson to do things that are not
medically possible. We look forward to watching
him grow, develop, and continue to amaze all of us!

If you have any questions or would like to get in
touch with me, feel free to email me at:

Also, if you would like to read more about our
journey with Anderson, visit our blog at

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.

Thursday, January 13, 2011

ACC and Moms-To-Be #6 Story

A few days ago I received an e-mail from Selina,
the mom of a baby born with Agenesis of the Corpus
Callosum. Selina wrote that after having read a few
stories from Moms-To-Be she felt a need to tell her
own story and to finally let her story out.

In her own words she wrote:

"Hopefully it can help someone one day."

This is the sixth story about ACC and Moms-to-Be.

It is truly a privilege to be able to post
Selina's ACC Pregnancy Story here.

Thank you very much Selina for your desire to
tell your story and for your desire to share
such a personal experience with other people.

Written by Selina:

"I was expecting a little girl in July with my husband.
We were quite excited. It was my first girl. We went
to an ultrasound at 36 weeks just to check the baby's
size. The tech viewed Chloe's head for about ten
minutes and said ok I will go write the report.

About 5 minutes later a Doctor came in and started
focusing on Chloe's head. After I sat there staring
at him for 5 minutes he said oh you probably want to
know why I'm here. Well yes we do I was getting a
little nervous.

He said your daughter has enlarged ventricles.
Ok what does that mean. He said straight out
I dont know exactly - it could mean a lot of things.
He went on to say she may need surgery as soon as she
is born, that she may be delayed and have some major
problems. That she may look funny when she is born or
have a hard time breathing. Then he just said ok you
guys are free to go. He just walked right out of the

I was balling my eyes out and my husband stayed so
strong for me. So now instead of being excited to
meet her I was so scared. I just wanted her to be
here so I knew she was ok.

For 4 weeks I sat and just cried. I didn't know what
to expect.

Over the next 4 weeks I did not look anything up
did not want to get too worked up. There was a chance
she would be ok.

July 17th she was born. She took my breath away.

After she was born she did not want to eat,
did not cry and couldn't keep her body
temperature up.

She went for an ultrasound at 6 hours old and
they said we can't really tell if she has ACC
so follow up with your Pediatrician.

At 12 hours old I went to look over at Chloe next to
my bed. She was purple and not moving. I yelled for my
husband and just as he jumped up the nurses came in.
They got her breathing again and wisked her away to
special care. She was there for 4 days. We then
brought her home. Still with no idea why she turned

Her first couple days home all she did was sleep.
When we saw our doctor he sent us to a Neurologist.
We went there thinking a short simple appointment.
We were so wrong. They admitted on the spot to the
hospital for an MRI and EEG. Chloe was only 13 days

We spent 13 long hard days in the hospital with her.
I have never cried as much in my life then I did that
two weeks. She had every test possible done. MRI, EEG,
EKG. She had so much done blood work x-rays and scans.

They told us that she did have Agenesis of the Corpus
Callosum. The doctors said that based on all her issues
already that she would have the severe side of ACC.
They explained it by saying some children are never
affected and some are that it was like a scale.
Based on her failure to thrive, high muscle tone,
poor motor skills, and being aged as a 3 week old
on development she would have the "severe" side.

I couldn't believe it and just kept saying to
myself it's not fair she did nothing wrong.

After two weeks there we came home. We started with
Early Intervention and their services. She started
physical therapy at a month old twice a week.

She then had genetic testing that came back with a
deletion in chromosome 6 and a duplicate of
chromosome 5. They have no idea what this means.

She has failure to thrive and had a feeding tube
placed in November at 4 months old.

She has hypertonia and her nervous system is

When she was 2 months old Chloe would scream for
hours for no reason. The doctors told us it was
just a side effect and did not know how long it
would last. She has since slowed down with these

It has been the longest 5 months of our lives.

The doctors just say well she may never walk or
talk and we don't know if she will live a full

I know that we are truly blessed to have Chloe
in our lives. We wouldn't trade a second of it.
My husband has truly been a rock. He still has
not let me see him cry. I think he feels if we
see him cry he is letting us down.

Chloe is almost six months and finally smiling
and cooing.

I hope nothing but the best for anybody going
through this or anything else.

I truly wish I had more support. A lot of people
don't understand and just look away. That hurts
more then knowing Chloe will never be "normal".
Even though I'm still not sure what "normal" is.
To me Chloe is normal and as perfect as she could

I don't know if you will read all or any of this
but thank you it felt good to express my story."

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, January 9, 2011

Adults with ACC Discuss Social Challenges

When the corpus callosum is missing, partially missing or
small and thinner than normal, there can be a variety of
possible effects.

One effect that many people who have Agenesis of the
Corpus Callosum (both kids and adults) struggle with
is social skills and the ability to engage in
conversation and socialize easily with others.

Recently a social skills plea for help, from an adult
who has partial agenesis of the corpus callosum, appeared
in an ACC support group that I belong to.

With the adult's permission, I am able to share it here
with you.

A 20-year-old adult with partial Agenesis of the Corpus
Callosum writes:

"Is anyone else out there having major socialising difficulties?
knowing what to say, how to say things and when to say things,
when you are with any people, any time of the day, everyday?
I do. Does anyone have any tactics, training tips they can

After 20 years of it i am getting desprate, now that Im supposed to
be an adult and all. Please help me if you can. Thankyou"

Cassie, also a 20-year-old adult, who has complete
Agenesis of the Corpus Callosum responded:

"I also have troubles with social questions. When I was in
highschool my best friend realized my struggles
( I wasnt laughing at the jokes, etc). She came up
with the idea that when we were out together she
would tell me when a joke was going to be said and
when we were out in a group if I missed something
she would explain to me wat it was I missed and tell
me if it was a sarcastic or literal remark. She would
also kinda give me a nodd when it was appropriate to
say something. fter three years of "coaching" I was
able to get most social questions. I still have difficulty
of when to say things. My biggest issue is coming up
with wat I want to say and the rest of the group is
already 3 topics ahead. In my class right now is a
Professer who likes to tease and it is part of her
personality. So when she is about to tease me she will
give me a wink so I know that its coming.
So,my advice: if you have a really close friend
that you can talk to set up a system so that you
can interact. Eventually you should be able to get
some or most of the social questions."

The adult with partial ACC who posted the original
question replies to Cassie:

"That friend sounds like one in a million Cas. One of my
major issues is that i dont have a close friend or a group
of close friends who I talk to about any of my difficulties,
because they don't understand because they too have their
own social problems. So I'm a bit stuck on the friendship
front. =( I have tried sooo many different settings to try
and make friends but havnt found them yet."

Many parents who have a child with Agenesis of the Corpus
Callosum (or a corpus callosum disorder) understand and can
relate to the difficulties with social skills, making and
keeping a friend or friends, engaging in conversation,
knowing what to say and when to say something and
social interaction with their child's peers that
were expressed by the adult who has partial ACC.

What can you do to help facilitate social skills for someone
who has agenesis of the corpus a question that
is asked often by both parents of a child with ACC and some
adults who have ACC.

The corpus callosum is colored in red in the picture above.

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. It is the largest single structure in the brain.

Lynn K. Paul, Ph.D. is the founding past President of the
National Organization for Disorders of the Corpus Callosum
and she is also the head of the Corpus Callosum Research
Program at California Institute of Technology (Caltech).

In her 2003 Conference lecture handout Dr. Lynn Paul
together with Janiece Turnbull wrote the following:

"ACC and Adolescence

Around age 12 and through adolescence, the corpus callosum of typical children becomes more efficient and effecive - this results in
the greater complexity of thought, emotion, and relationship that
becomes possible during our teen years

When the corpus callosum is absent or malformed, it is possible that a child who has been developmentally "typical" may begin to lag behind as his or her peers increasingly depend on their corpus callosums

Or if a child with a callosal disorder has been somewhat delayed, the increased social expectations of teenagers may make the child's delays even more obvious"

The quoted information can be found in the 2003 Conference
handout below:

Adolescence and Social Issues in ACC
by Lynn K. Paul, Ph.D. and Janiece Turnbull, Ph.D.

Dr. Lynn Paul appears in the video below and talks about
social skills, ACC and the corpus callosum. More
specifically she says:

"As children our corpus callosum is not completely developed.

It becomes more functional particularly around age 10, 11, 12.
And if you think about what happens for kids around 10, 11, 12,
everything is about social issues, everything is about who said
what about whom, everything is about all that interaction.
Where your typical kids are cruising along and your AgCC kids
are cruising along fairly similarly; suddenly the corpus callosum
start to develop of those typical kids, their social processing
and problem solving and abstract thinking skyrockets very quickly
and our kids don't."

youtube ACC video documentary:

--Dr. Paul's quote is heard at 8:12 in the video--

The California Institute of Technology, currently involved in a Corpus Callosum Research Program states on their website:

"Research indicates that even those individuals with AgCC who function very well have subtle difficulties in social and executive skills that may impact their daily lives."

The California Institute of Technology website also states:

"The impact of AgCC may become more evident as a child reaches puberty. In a typical brain, corpus callosum functioning becomes much more efficient around ages 10-12, as the callosum mylenates. As the corpus callosum becomes increasingly functional in their typically developing peers, children with AgCC often appear to fall behind. Particular areas of difficulty are social understanding, social communication, comprehension of non-literal language (for example vocal inflection and proverbs), problem solving, executive skills (for example organization, flexibility in response to change, and planning), emotion recognition in others, self-awareness and personal insight. People with AgCC may appear somewhat rigid in their interests and socially simple. In this sense, AgCC symptoms may "get worse" with age ... however, often these individuals learn coping skills well into adulthood, so they may also "get somewhat better" with age eventually."

When a child has agenesis of the corpus callosum the
importance of teaching social skills and looking for
opportunities to help the child engage in social interaction
with their peers should begin as early as possible.

Some kids who have ACC receive a weekly social skills class
at school led by a school psychologist and speech therapist.
The use of social stories, guidance, opportunities and
practice interacting socially with their peers in different
social situations, having a lot of repetition, receiving
encouragement and becoming confident in themselves can be
very helpful.

If your child has an Individualized Education Plan (IEP) in
school, social skills goals should be written directly into
your child's IEP along with their academic goals, keeping in
the back of your mind that as they get older and reach the
ages of 10, 11 and 12 you may see a greater need for new
social skills goals and mentorship help in the school, home
and community settings.


1. Getting back to the plea for help (from the adult who has
ACC) for socializing tips and ideas...what types of
intervention can you suggest?

2. What specific methods have you used for your child who
has ACC that are helping them learn social skills and helping
to improve interaction with their peers and encourage
making a friend?

3. What types of social skills goals does your child, who has
ACC, have in their IEP?