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
share?



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 callosum...is 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.

QUESTIONS:

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?

Stories2Learn - Social Stories

Did you watch the video?

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

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

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


Price: $13.99

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

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

Stories2Learn Tutorial movie download
Note: video tutorial takes several minutes to download





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





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




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

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

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

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



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



He likes it.

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

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

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



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

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

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

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

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

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

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

So what do you think?

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

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

Video about ACC and Social Skills

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
abilites.

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

Agenesis of the Corpus CallosumSocial Skills & Challenges

The ability to connect socially with another
person is a vital and important part of
life.

Many kids who have Agenesis of the Corpus
Callosum lack the skills necessary to interact
socially with others.

As a child who has ACC gets older each year
and moves forward in grade level their social
skills often times remain far behind that of
their peers. The struggle to interact with
their peers becomes all the more difficult and
challenging leaving the child at risk for being
bullied and teased and creates isolation from
their peers as well as a lack of self-confidence
and a lowered self-esteem.



A lot of parents who have a child with ACC
mention that their child has a difficult
time trying to make a friend and that their
child struggles with being able to initiate
conversation, with knowing how to engage in
appropriate conversation and with keeping
a friend if they can make a friend.

Many parents say that their child who has
ACC gets along best with either adults or
with children who are much younger.

Some parents also say that their child with ACC
doesn't really have a real friend.

The parent of an 8-year-old child who
has ACC writes:

"My son attends social skills one time a week.
...it's supposedly a "slow process". However,
I see as a mom where he's lacking-- eye contact,
saying greetings and saying goodbye/thank you.
Making that initial step to begin a conversation
with peers. Sometimes it's the reading of
facial cues that just doesn't seem to be there.
Also if the kids are doing who knows what, he
can just go off on another subject-- as if his
mind is thinking something not relevant so he
just interjects with that topic. Also sometimes,
very infrequently, ----- just doesn't have the
words so he'll cry."

It is difficult enough for a typically
developing child who has the capability,
understanding and necessary tools to
use their social skills in order to explore
and navigate their way around the social
circle in school.

The child who has Agenesis of the Corpus
Callosum is often at a disadvantage socially
right from the beginning and lacks the
necessary tools and skills to allow them to
find their way and participate in a social
circle of children who too often misunderstand
them, are not accepting of them and even
ridicule them.

When a child has Agenesis of the Corpus
Callosum some of the things they struggle
with socially are:

1. Difficulty processing and interpreting
social cues
2. Trouble with pragmatics of language
and verbal social interaction.
3. Difficulty recognizing subtle emotions
expressed on another person's face.
4. Often take all conversation literally
5. Difficulty understanding the intentions
and states of mind of other people. Lack
of ability to take the perspective of
others.
6. Difficulty understanding abstract humor.
7. Social Immaturity
8. Difficulty engaging in appropriate conversation.

Kathy Schilmoeller, Ph.D., co-founder of the
ACC Network and also the mom of a grown son
with ACC who is high functioning wrote the
following:

“We are finding that many children with ACC
need specific social skills training. They
don't read social cues well. Sometimes their
facial expressions may present a mismatch with
the information they are telling, for example,
smiling when telling that a classmate's dog
has died. As mentioned earlier, speech-language
pathologists can help with teaching children
the pragmatics of language and verbal social
interaction.”

Kathy Schilmoeller's quote comes from her
document titled “Educational Suggestions For
Children With ACC: A Beginning”.

Travis Research Institute has been studying
the corpus callosum since 1992. They conducted
a study on people with isolated ACC who have a
normal IQ level and one of the studies looked
at psychosocial abilities:

“Results of Studies of Psychosocial Abilities:

· Persons with ACC often have difficulty
in processing and interpreting social cues and,
thus, may appear naïve or gullible.

· ACC is associated with difficulty imaging
and anticipating the consequences of actions in
complex social situations, such as making a
particular remark in a particular social context,
or not showing up for an appointment.

· It is difficulty for persons with ACC to
construct adequate imaginary social narratives
based on single pictures of people interacting.

· Persons with ACC have a reduced ability
to infer the intentions and states of mind of
other people, particularly when the inference
demands integrating information from previous
social contexts.

· Individuals with ACC have difficulty
recognizing more subtle emotions in expressions
in faces.

· Persons with ACC have limitations in
insight into their own emotional responses and
about their own social skills.”

The quote comes from the Travis Research Institute
document titled: "Mental and Social Disabilities in Agenesis of the Corpus Callosum".

A Review written by Lynn K. Paul, Warren S. Brown, Elliot H. Sherr, M.D., Ralph Adolphs, J. Michael Tyszka, Linda J. Richards and Pratik Mukherjee titled:
“Agenesis of the corpus callosum: genetic, developmental and functional aspects of connectivity" finds:

"Parents of individuals with primary AgCC
consistently describe impaired social skills
and poor personal insight as the features that
interfere most prominently with the daily lives
of their children96,103–105. Specific traits
include emotional immaturity, lack of
introspection, impaired social competence,
general deficits in social judgment and planning,
and poor communication of emotions (for example,
individuals prefer much younger friends, have a
marked difficulty generating and sustaining
conversation, take all conversation literally,
do not take perspective of others, and are unable
to effectively plan and execute daily activities
such as homework, showering or paying bills96,105).
Consequently, patients with primary AgCC often have
impoverished and superficial relationships, suffer
social isolation and have interpersonal conflict
both at home and at work due to misinterpretation
of social cues.
Responses of adults with primary AgCC on self-report
measures also suggest diminished self-awareness104. The
patients’ self-reports are often in direct conflict with
observations from friends and family. One potential
factor contributing to poor self-awareness may be a more
general impairment in comprehension and description
of social situations. For instance, when asked to generate
stories about social pictures, adults with primary
AgCC provided stories lacking in logic, narrative content
and social understanding106. It appeared that they
had difficulty recognizing the implications of pictures
depicting social scenes, imagining a sequence of events,
and organizing relevant ideas in order to present an
appropriate narrative. Similarly, when presented with
highly provocative social pictures (for example, photos
of mutilations), adults with AgCC tended to underestimate
the emotional valence and intensity of the pictures,
particularly for negatively valenced pictures107. Taken
together, the neuropsychological findings in primary
AgCC highlight a pattern of deficits in problem solving,
in social pragmatics of language and communication and
in processing emotion."

When a child has Agenesis of the Corpus
Callosum or a corpus callosum disorder, it
is vital that the same consideration and
effort that is given to teaching and learning
academic goals also be given and implemented
for social goals.

Very specific and detailed social goals and
how those goals will be taught to the child
who has Agenesis of the Corpus Callosum should
be written into the child's Individualized
Education Plan (IEP).

The parent of a 12-year-old child who has ACC
writes:

"----- is quite delayed in his development but one of the things
they have been working on at school is the eye contact.
Sometime in grade 3 or 4 the school decided to have one
person from the class each day come up to ----- and say
hello. Then the Education Assistant would prompt -----
to look at this child. The child would be different each
day. In the beginning ----- would not even acknowledge
the child but eventually he started to look and then he
started to make eye contact with the child. Now in
Grade 6 if someone comes up and says hello to him he
responds. Now not only do students say hello to him but
everyone from the staff, teachers and other parents stop
and talk to him. He has his favourites and it is amazing
to see how he lights up when he sees people he knows.
Another thing the Education Assistants would do is take
----- to the lower grades and use the ACC & Me book and
talk about ----- and his condition. ----- would also
participate in circle time with them. This gave an
opening to all the new students who did not know -----
to learn about him and not be scared of him. Nowadays
if we take him out in the community we always seem to
run into someone from his school and they always come
up and say hi to -----.
Also ----- has a reading buddy who reads to him everyday."

What better place to work on learning social
skills for a child who requires assistance
than within the confines of the social arena
school setting where they attend school on a
daily basis for a large portion of their day.
The opportunities for socialization are
certainly there, however, a much needed mentor
and well-rounded social skills training program
to help facilitate the learning of social skills
for the child who has ACC often are not.

The vital factor that MUST be addressed though
in order for the child to be successful and learn
those social goals is for that child to have the
appropriate mentor/guide in place. A child
who has ACC needs to have someone who is able to
actually teach the child how to interact in a
variety of different social settings in an
appropriate manner and to then be able to
practice (with much repetition) what they
learn through demonstration and interaction
with their peers. This is many times the
missing piece that is not addressed and is not
completely put in place in an effort to help
a child with Agenesis of the Corpus Callosum
be successful with learning social skills
and HOW to socialize with their peers.

This missing piece when overlooked in a
child who has ACC leaves them at a potential
significant social risk for falling even
further behind on a social level as well as on
more serious levels.



But, when the missing piece is implemented
it has the ability to make a great positive
social difference in the life of a child who
has Agenesis of the Corpus Callosum.



One parent of a 7-year-old child who has ACC writes:

"We, also, did the lunch bunch for social skills.
-----'s guidance counselor and speech therapist
hosted it each week. It helped ----- and the other
kids in the group learn how to communicate with
their peers. -----, like so many acc'ers, struggles
with social issues and doesn't seem to relate to
those her age, but gets along great with those older
and younger. This bunch helped her be able to start
and continue a conversation with appropriate words
and body language. She engaged in conversations with
other kids with similar issues and with typicals.
Her OT sat in on a few last year and thought it did
wonders for -----. She had it written into her IEP
that ----- would attend to a social skills lunch a
min of once a week. This coming year the OT and ST
will host instead of the guidance counselor. They
take digital photos each week and send home copies
so we can see different techniques used. I would
recommend this to any child struggling with keeping
up with their peers and social skills. It's nice
when they include typicals, because not only does
it help our kids adapt, I think it teaches compassion
to those who don't have any issues."

Leaving a child who has ACC on their own to
try to learn social skills (as a typical child
would learn) in the school setting is ineffective.

Providing a child who has ACC minimal assistance
to learn social skills is better but is not enough.

A child who has ACC, who struggles with social
skills, needs and requires specific and detailed
teaching plans, lessons and guidance to help
them have the best chance to achieve their social
goals and to learn effective social skills.

The family member of a young child with
partial ACC writes:

"Also, I have been trying to mainstream him in
the past few weeks after school, by attending the A+
after-school program with him, acting as an aide, and
trying to get ----- to engage with the kids. But
the problem is that ----- at this point is not able to
communicate easily with his kindergarten peers in this
play situation (playing with balls and hoops, etc) and
would be standing off to one side without me playing
catch with him. What I try to do is to involve another
student, throwing the ball to ----- and to the other
person, taking turns."

Many parents who have a child with ACC mention
the following areas that their child struggles
with:

Difficulty joining in with peer play;
tend to parallel play or sit on the
sidelines watching.

Trouble verbally conversing with another
child due to slower processing of language.
When the child finally figures out what is
being said and has something to say in return,
the topic has already moved on.

Difficulty with reciprocal conversation; some
kids tend to have conversation that is one-sided.

One parent of a 7-year-old child with ACC
writes:

"I had a "meeting" with our 1-1 behaviorist
and she said a social skill my child needs to work on
is reciprocal conversation. I never thought of this
before,...The idea for us is to have a conversation
where it isn't focused on my son's needs or likes.
That he needs to ask questions of others and strike
up questions to learn that other people are in this
world and have interesting topics and ideas to share."

The involvement of typical peers who can provide
modeling of language and social skills for kids
who have ACC is a huge benefit. Just as kids
who have ACC need to be taught social skills,
it is equally as important that typical peers
also be taught how to reach out to a child who
is different and how to include them in
conversations and play. This reciprocal learning
and interaction experience provides harmonious
teaching lessons and values for all children
involved...lifetime values that they carry with
them in their hearts.

When my own son who has ACC was younger and in
grade school, he was mainstreamed for 50% of
his day with a one-on-one aide. It was a wonderful
experience for my child. I was so happy that
he was able to have that experience of inclusion
with typical peers and expressed my gratitude.
School staff told me that it was an equally
good experience for the typical peers and helped
them to have a greater understanding and be more
accepting of children who are different.

Some parents say that their child who has
ACC is involved in a social skills teaching
program at school. They mention that social
stories are used and that their child attends
a lunchtime social group led by the school
psychologist, a speech therapist or both.

Social stories are short stories that provide
concise detail for a specific social situation.
The story can help a child understand what
they might expect to happen in a particular
social situation and what is expected of him
or her. Social stories can take new form by
singing a song (with a musical message) to help
teach a child. Sometimes children respond and
learn more easily through the use of music and
singing words as opposed to words.
This is true for my own child who has ACC.

One parent of a 7-year-old child who has ACC
writes:

"Her delays are mainly social. She is on target academically,
even a little above in reading. She works w/her speech
therapist on social skills once a week, but it is an
ongoing process. We read lots of social stories together
and like the others. we have to teach her all her social
skills. She says things that are not socially correct
alot of the time. We've been embarrassed more than once,
but she is also quick to say how pretty someone is or if
they smell nice. (she also has told someone they "STINK" too).
She still likes to parallel play, but is beginning to join
in. She gets along much better with kids older or younger
than her. She doesn't follow directions like others her
age. She can't be embarrassed. (At least I don't think. )
When she's having a meltdown or temper tantrum and we try
to tell her people are looking at her, her reply is
usually-"tell them to close their eyes ". She really
doesn't care what others think.
She is one of the funniest kids, I think because she
speaks her mind and is a very literal person. Don't say
what you don't mean. She takes everything at face value.
She doesn't read facial expressions or body language very
well either."

And other parents find that their child's
school does not yet offer social skills groups
but, through persistence and determination,
they find other ways:

Another parent of a 7-year-old child with ACC
writes:

"I wanted to share what ----- shared with me at
the ACC conference regarding a social skills
group (This has made a tremendous difference
in my daughter's life). There are no social
skills groups available at my daughter's school.
I also saw a social skills group mentioned by a
flyer at a psychologist's office (which is 45
minutes from my house) but there was nothing
available locally. ----- mentioned starting
"A Circle of Friends". Post a list in the
classroom and the child that signs up is your
child's buddy for the day (takes her to recess,
plays with her during the social aspects of
center time, reads with her, and also attends
adaptive phy. ed while she gets to ride a bike,
etc...).Once a month, I bring pizza and these
kids get to eat with their teacher in the
classroom. In one month, I have seen an
incredible difference in my daughter. She
did not know how to initiate to make friends
so a "Circle of Friends" makes it easy for
her. She had been rejected so much, her
self-confidence was nil. It is nice to see
her radiant smile again!!!"

It is imperative for a child who has ACC or
a corpus callosum disorder to be taught social
skills using direct teaching/demonstrating
services with A LOT of repetition for the
child to be able to learn socialization skills
and how to use those skills to interact with
their peers.

The responsibility for teaching social skills
to a child who has Agenesis of the Corpus
Callosum certainly should not be placed solely
on the part of the child's school. A parent
is responsible to help teach their child who has
ACC social skills and help engage their child
in opportunities where social situations can
foster the learning of more effective social
skills. It takes a team effort teaching strategy
on the part of both the child's parents and
the school to help the child who has Agenesis
of the Corpus Callosum be successful in learning
social skills and how to use those skills
effectively in their childhood and to help
them become better equipped socially as they
move farther along the path of life.


This Agenesis of the Corpus Callosum Social Skills
& Challenges document is available in Word format.
If you would like to receive a copy please E-Mail me.

Learn more about how to get a copy of
the children's ACC & Me book.

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.
Challenges with social skills are just one of
many ways that ACC may affect a person.

A very special thank you to each one of you
who gave permission for me to quote you and for
your willingness to share information in this
document about your child who has ACC. Thank you
also to the professionals who spend long hours and
devote their time to researching the corpus callosum
and Agenesis of the Corpus Callosum.

I welcome any and all comments.

Friends

So many kids who have Agenesis of the Corpus
Callosum have difficulties to varying degrees
with friendship and socializing.

It was much easier for me to include Matthew
in social groups in the community and in the
school when he was younger. However, when a
child begins to get older in years but lags
behind developmentally it becomes more
difficult to find places to include your
child for socializing.

When Matthew was much younger and entering
school I made sure that he was mainstreamed
50% of his day for the social benefits it
would provide because Matthew is very social
and loves to be around kids. He learns much
from watching other kids play.

I also took Matthew to a community music
class when he was about 4 or 5 even though
the class was for much younger kids. It
worked nicely.

However, as a child moves out of the grade
school years and becomes a teenager (but still
plays like a grade school child) it is a
struggle (and sometimes heartbreaking) to
know how and where to include your child
in activities so they will be around
other kids who are doing things that are
interesting to your child.

I have cried a few tears over this topic
before and I also went over a teacher's
head at school and helped Matthew be able to
go to a mainstream music class when he was
in junior high school.

I have been told by a community music class
that they felt that music therapy would be
a good solution for Matthew to have music.
Another teary-eyed moment with the feeling
of being turned away from something that
Matthew would enjoy before he was even allowed
to experience it and once again being put into
isolation away from typically developing kids.
Not to say anything bad about music therapy.
I think it's wonderful and we take Matthew to
music therapy twice a month but we have yet
to find a music therapist in our area who has
a group music therapy class.

Unfortunately, we live in a world that needs
to learn how to better include and welcome
with open arms people who are different.
With more inclusion comes more acceptance
and understanding by society, I believe.

Well, last night we had one of those moments
that every parent wants for their child who
doesn't have any friends.

Matthew's dad and I took him out to ride
his bike in the neighborhood after dinner.
It was a beautiful, sunny evening and
Matthew was happily riding along pedaling
his trike when one of the neighbor boys
(who is much younger) came riding up on
his own bike.

The neighbor boy spent the whole time
riding bikes with Matthew and talking to
Matthew and us. The little boy is 7 years
old. He was making Matthew laugh saying
all the silly things that Matthew likes
about monkeys and then acting like a monkey
complete with monkey sounds. It was
adorable.

Because we don't have sidewalks in our
neighborhood we ride bikes along the road.
We live on a dead-end street that is not
busy. While riding along we saw a hotdog
laying in the road and started laughing.
The neighbor boy rode his bike over the
hotdog and squished it. It was very funny
and became a game. Matthew tried to ride
over it with his trike but his tires missed
it so the neighbor boy took another turn
on his bike aiming at the hotdog with his
tires and once again smashed the hotdog.

I am very thankful that the neighbor boy
spent time riding bikes with Matthew last
night. It is a night that put a smile on
my face and still makes me smile today. :)