Thursday, August 27, 2009

Agenesis of the Corpus Callosum
Social 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.

11 comments:

  1. I'm trying to translate the post to include it in the forum, especially for those who have children attending school. I also added the link in the forum tagboard so if someone wants to read the post in english can do it. Have a nice day!

    ReplyDelete
  2. Anna, Thank you for your comment
    and for your interest in translating the ACC Social Skills & Challenges document to Italian. Wow! That is quite a job you are taking on. Thank you for taking the time to translate it.

    Thank you also for posting a link in the ACC Italian Forum. I truly hope that it will help other people.

    Sandie

    ACC Italian Forum:

    http://www.agenesiacorpocallo.org/forum/

    ReplyDelete
  3. who do i ask about social skills learning for my 9 year old w/ A.G.C.C.?

    jlkurdziel@hotmail.com

    ReplyDelete
  4. Dear Parent of 9 year old with AgCC,

    Thank you for posting your comment with respect to wanting more information. I
    am the mom of a boy who is 16 years old who has complete ACC.

    I would be happy to give you additional information regarding social skills learning and how to get in touch with other parents who have a child with ACC who also get help with social skills.

    I will send you an e-mail with the information.

    Sandie
    hope@aracnet.com

    *Note: A.G.C.C. = agenesis of the corpus callosum

    ReplyDelete
  5. thank you this site is very informative!

    ReplyDelete
  6. I'm so glad that you find the site helpful. Thank you very much for your nice note.

    ReplyDelete
  7. I am with tears reading; my son 27, was diagnosed and discovered with this condition 2 years ago. Reading your information about social skills, language development, not having the ability to cope with friends his age while growing up, everything makes sense now, and I feel a lot of compassion for him. I wish I could have known this when he was a small child and helped him with the proper tools. He struggled all his life, he is a wonderful young man with a BS in Graphic Design but still misunderstood many times by society and even family and close friends..As far as I know he has a very rare and special condition along with the ACC, hydrocephalus and a cyst, NONE of these we knew before, never had any physical symptoms nothing, he has been a healthy boy all his life..

    ReplyDelete
  8. This is really encouraging.....our son has complete ACC & am really feeling at a loss of how to respond to some of his behaviours.

    ReplyDelete
  9. I am a mother of two year old girl with partial agenesis of corpus kalosuma. Since I live in a country that has no or a very poorly organized program to help these children i am interested where I can find instructions for exercises that can help my daughter?

    ReplyDelete
  10. HI my daughter have congenital ACC and now 7 month old, Still she is perfectly normal but physically weak.What should i do?

    ReplyDelete
  11. Hi

    My daughter is now 17 years old. Her c-ACC was diagnosed 2 years ago with a brain scan. She is presently learning to do cake decorating and is starting up her own baking business from home. What we want to know now, is: 1) will she ever be able to drive a car, and 2) will she ever be able to have a family of her own? These questions are being asked by her regularly, and I am at lost as to the answers.

    Thanks

    ReplyDelete

I am very interested in reading your comments and
look forward to hearing from you. Thank you.