Tuesday, October 27, 2009

Teaching & Agenesis Corpus Callosum



A teacher is a careful observer of each
student and understands that every child
has their own personality, motivations,
strengths, weaknesses and gifts.

Getting to know each student is an especially
important part of what a good teacher does
in an effort to provide the best possible
instruction for the child to help him learn
to his greatest potential.

When a child has Agenesis of the Corpus
Callosum it can be confusing how to
effectively teach and help the child learn
not only for the child's teacher but for the
child's parents as well.

There is no way to predict how ACC or a corpus
callosum disorder will affect a person diagnosed
because ACC has a very broad range of effects.

There is also no set guidelines for how to teach
a child who has Agenesis of the Corpus Callosum.

Each person can be uniquely affected as a result
of having ACC. What works for one student in terms
of learning and education may not work for another
student with ACC.

It is extremely helpful to have teacher/parents
communication flowing regarding the child with
ACC to gain insight into how their child learns,
their strengths, weaknesses, what motivates the
child, etc. Anything that a parent can put into
writing about their child with ACC with respect
to helping their child learn in the classroom is
very valuable information for that child's teacher(s).



Some things that are mentioned often when a child
has Agenesis of the Corpus Callosum are:

  • A child may need A LOT of repetition to learn something.

  • It can sometimes take a child much longer to
    grasp a skill and it seems like all the
    repetition is going nowhere with no progress
    but one day it just clicks and they get it.
    It all comes together for them. They often
    times just really need that repetition to
    make the connection.

  • Sometimes children with ACC take things very
    literally. For example, "Wake up and smell the
    coffee" could be taken very literally by a
    person with ACC.

  • A child with ACC may struggle with social
    skills. A child may have trouble with making
    eye contact, showing empathy, reading and
    comprehending facial gestures.

  • Staying on task and focusing may be difficult
    for children with ACC.

  • Moving a child with ACC, who is not focusing
    well, to the front of the classroom may prove
    to be very beneficial.

  • A child who is having difficulty staying on task
    and focusing may also greatly benefit and
    require a one-on-one aide or a shared aide.
    Some parents have a child in school who has
    an aide in the classroom to help but the other
    kids are not aware that the aide is there for
    that child.

  • Receiving too much information at once may
    be difficult for a child with ACC. They may do
    wonderful with one or possibly two part
    directions but if you give too many
    directions at once they might become
    overwhelmed and not be able to follow
    through with everything being asked of
    them.

  • A child with ACC may require extra time to
    process information and need extra time to
    complete tests.

  • Children with ACC may have trouble with
    abstract reasoning. Keeping information
    presented as concrete as possible can help.

  • Children with ACC may learn more easily if
    what is being taught is broken down into
    smaller tasks.

  • Children with ACC may struggle with reading
    comprehension. They may read very well but
    find it difficult to remember what they
    just read.

  • Giving a child different ways to receive new
    information and new ways to express
    themselves may be exactly what the child
    needs in order to process the information
    better and express their knowledge. For
    example: a child may not do well with
    using a pencil and putting their thoughts
    into written words or they may not use a
    pencil or crayon well to draw a picture
    but if they are given other methods to
    use such as a computer (or whatever else
    is discovered) that child may be able to
    put together perfectly their own picture
    or thoughts or express themselves in a
    manner that is just right for them.
    Finding that way isn't always easy but
    it's always worth a try or two or ten.

  • A child with ACC may have trouble staying
    organized and may struggle to remember
    homework assignments. A homework log
    with all assignments can be helpful.

  • A child with ACC may find it very difficult
    to put their thoughts into words and struggle
    with handwriting and taking notes.
    Handwriting may be very slow for them.
    Allowing a child to use an Alphasmart in
    class or to type their assignments can be
    a tremendous help for a child who has ACC.

  • Children with ACC may have difficulty with
    math. Being able to use a calculator can be
    very helpful for the child who has ACC.



More Agenesis Corpus Callosum and Education
information can be found at the links below:

Teaching Resources

ACC Social Skills & Challenges

ACC & Me Children's Book

Considerations For Educators Of Students With ACC:
This document is written by Mr. McCallum and
he is a teacher who taught a child with ACC in
his classroom. He offers detailed and valuable
information. The web page version of this
document is no longer available. If you would
like to receive a copy of “Considerations For
Educators Of Students With ACC” by Mr. McCallum
please E-Mail me. In your e-mail it is helpful
to know if you are a parent or a teacher
requesting the information.

Monday, October 19, 2009

Take a Leap of Faith..!



We recently took a BIG Leap of Faith!

We made the decision to attend church
for the first time in a very long time.

Our child, Matthew, who has complete Agenesis
of the Corpus Callosum is developmentally
delayed in all areas. He is 16 years old.
However, he functions on a very young level.

We cannot leave Matthew in the nursery or
in children's church alone because he requires
someone to stay with him due to his delays and
his special needs.

When you have a child who has special needs
there may be times when you find yourself
becoming isolated from some activities for
various reasons that will depend upon your
own particular circumstances.

The isolation may be partly a result of your
own fears and concerns that you wrestle with
in your mind. Those fears and concerns then
further prevent you from seeing anything but
additional distance from the place you want
to be.

In our case, Matthew does not have behavior
issues. Quite the contrary. He is very sweet
and full of love and kisses, lots of smiles and
is a genuinely happy boy from the time he wakes
up until he goes to bed.

We were concerned if he would make noise
and babble sounds outloud during a quiet
time or during the sermon. Also, he
struggles with problems like having a lot
of gas and burping.

We were unsure if a gigantic, loud burp
would burst forth from his mouth during
church service or (God forbid) from the
other end.

But the reality is he doesn't do those things
on purpose or to be disruptive and yes those
things may happen (even while sitting in church)
but we put one foot in front of the other
(and determined to try it)...we went to church
despite our fears and concerns.

Our first Sunday went beautifully during church.
Matthew did great! We sat at the back of the
church in the last row on the aisle (so we could
easily get up and step out if need be) and sat
Matthew in between myself and my husband during
the church service. During the service Matthew
would lean to kiss me and get a kiss, then lean
toward his dad for a kiss and this became a
sweet ritual throughout the entire service.

We also brought something he likes to do to keep
his hands busy. It was such a blessing to step
out of our isolation, join the community and
have fellowship.

Last Sunday also went very well. Matthew loves
music! We stand up often during the service
to sing songs and Matthew's head moves from
side-to-side while the sounds of singing
voices and melodious music fill the room.
Again, the sweet kissing ritual took place.
He is happy! We are happy!

Did he make some noise? Yes, this time he
did.

Did he burp out loud? Yes. He didn't do
it on purpose and I have come to terms
with the fact that he will probably do it
again. But, as much as we are both a bit
concerned and embarassed, we won't let it
stop us from going to church.

Last night my husband said to me that he
was worried while sitting in church last
Sunday that Matthew was going to let out a
huge, loud burp and it surprised me that he
had those feelings. I didn't really think
that my husband felt awkward like I do about
those kinds of things.

Is there something that you have stopped
doing; something that you want to do as a
family but aren't sure how or if it will
work due to your own situation..?

I encourage you to make a decision to try
whatever that something is that you have
become isolated from doing and to take
your own Leap of Faith..!


Sunday, October 4, 2009

Destiny...


"Life is like a box of chocolates...
you never know what you're gonna get."


That is a famous quote from the movie Forrest
Gump.

Fifteen years ago my husband and I went to see
the movie Forrest Gump at the movie theatre.

Matthew was a baby then...only nine months old
at the time.

My parents watched him for us so we could go to
the movies.

We had just learned about Matthew's diagnosis of
complete Agenesis of the Corpus Callosum when he
was four months old so we were in the beginning
stages of our journey having had only five months
to deal with it.

Little did I know that when we sat down on the
theatre seats for a night out as husband and wife
to watch Forrest Gump that I would be filled with
tears and find it emotionally difficult to enjoy
the movie as I watched little Forrest Gump struggle
to run away, while wearing leg braces, from the kids
who were being mean to him.

I know that the movie is wonderful but at the time
I was stuck in my own emotional whirlwind of
wondering if my own child may be disabled, wear
braces and have other possible challenges.

Rewind several years earlier before Matthew was
born. My husband and I dealt with infertility for
many years before we decided to adopt a baby.

When we made the decision to adopt, we applied
through Children's Services Division but were
told that the chances of us being able to adopt a
baby or toddler were slim and that it would be
more likely that we would adopt an older child who
would probably have some challenges such as
physical, mental or developmental disabilities.
We were required to take several classes before
we could adopt through this agency.

We only took one class and I knew that I was not
able to proceed further down this avenue because
my heart's desire was to adopt a baby. I did not
see myself as being the mommy of a child with
special needs.

So, we applied through a completely different
adoption agency and we were chosen by a birthmom
who was eight months pregnant...Matthew's birthmom.

Fast forward sixteen years later and our
'baby', Matthew, celebrated his 16th birthday
on October 1, 2009.

We took him to the beach and stayed overnight a few
nights in Seaside, Oregon to celebrate his birthday.

Our last night in the condo I was searching through
the cable guide on the television and saw the movie
Forrest Gump listed so I switched the channel and
began watching the movie.

It made me cry several times though now I was able
to see the movie in a different light and my tears
flowed in response to the beauty of the movie, the
story of love, the magnificent way in which
Forrest Gump was able to love unconditionally.

At one point in the movie Forrest Gump's Mom
explains to him that it was her destiny to be
his mom. Then he wants to know what his destiny
is and she tells him that he will have to
discover that for himself.

I ended up becoming the Mom of a child who has
special needs.

I believe that it was my destiny to be Matthew's Mom
and that Matthew's destiny is yet to be discovered
but will unfold one day at a time...

When we think we are in complete control of our
own destiny I think that is the time to stop and
realize that...


"We toss the coin, but it is the Lord who
controls its decision."
~Proverbs 16:33


Matthew had fun opening his birthday presents,
playing with his new toys, taking walks through the
town, riding the carousel several times, and
spending time with his grandparents who came
with us.

While walking along the Seaside turn-around
boardwalk that overlooks the beach and ocean
we saw this beautiful sandcastle...


Today I bought Forrest Gump on DVD and it will
always hold a special place in my heart.

Friday, September 18, 2009

Learn Sign Language




baby signs "eat"

Some kids who have Agenesis of the Corpus
Callosum may be delayed in their speech or
may have very little verbal speech. Sign
Language can be a wonderful way to help give
a child the ability to communicate.

In June of this year I did a post about Sign Language.
My son, Matthew, who has complete ACC is non-
verbal with only a handful of words. His main
form of communication is through the use of an
augmentative communication device called a
DynaVox V and through the use of sign language.

One of the best and easiest ways that we both learn
sign language is by watching sign language DVDs for
kids.

I found Baby See 'n Sign Volumes I and II a few
years ago and we find these DVDs to be helpful
in teaching us many different signs.



Baby See 'N Sign Volume I is divided into seven
categories and contains about 60 signs:

Let's Get Dressed: bath, shirt, hat, shoes
Food: milk, banana, cereal, apple
Chow Time: eat, spoon, juice, cup
Play Time: play, ball, boat, book
Animal Pals: bird, duck, bear, cat
Down on the Farm: cow, horse, chicken, pig
Away We Go: car, walk, airplane, train

Each category in Volume I contains about eight
signs to learn. I have listed only a few of
the signs taught in each category.


Baby See 'n Sign Volume II is divided into seven
categories (plus Bonus Signs) and contains over
100 signs:

Familiar Faces & Places: mom, boy, sister, school
Outdoors: flower, tree, sun, sky, rain
Zoo Friends: monkey, lion, bear, giraffe, elephant
Party Time: balloon, cake, music, candy, candle
My Body: face, hair, teeth, smile, mouth
Bath Time: clean, dirty, bath tub, soap
Nighty-Night: tired, sleep, blanket, night light, pray
Bonus Signs-Manners: please, thank you, sorry, want


note: the sign for "giraffe" in this DVD is not demonstrated the way that we have learned the sign.


Each category in Volume II contains about sixteen
or more signs to learn. I have listed only
a few of the signs taught in each category.

Matthew likes Volume II the best. He will sometimes
watch this DVD without me and while I was watching
the DVD to write down some of the signs, so I
could share them here, I discovered that Matthew
knows more signs that I wasn't aware he knew. He
really surprised me by making the signs right along
with the words "star" and "towel" and a few others.
I had no idea he even knew how to make those signs.

The signs are taught through the use of displaying
real life objects up close on the full screen. They
show babies, toddlers and small kids throughout
much of the videos. The sign is demonstrated by an
adult, Johanna Larson-Muhr, who is a American Sign
Language instructor.

Each word is shown a total of three times by
showing a full screen picture (that is different
each time) representing the word.

The written word is always shown with the picture
and the word is verbally spoken.

After each picture is shown you will then see the
American Sign Language instructor appear on the
screen to demonstrate the word.

Each word is shown a total of three times with
3 different pictures, the word is spoken each time
and demonstrated using sign language three times.

There is a lot of repetition involved in this
video. Repetition is a key ingredient that many kids
who have ACC require.

Baby See 'n Sign is available in both DVD
and VHS format.

More information can be found at:
Baby See 'n Sign website




this video clip does not come close to representing
the quality of the DVDs and what they offer, in my
opinion. The DVD movie does not move across the screen
the way this video clip shows and is not blurry. The
DVD has excellent picture quality.


Order Baby See 'n Sign
They are offering free shipping.

Sunday, August 30, 2009

Back To School




Personally, the end of summer and coming to
terms with the fact that the sensational
sunshine (that I wait months and MONTHS to
see here in Oregon) and all the delights the
summer season brings is nearly over is
not
an easy task for me. I am one to squeeze
every last ounce of fun and sun out of
summer right down to the very last drop
and then I shake that last little bit of
summer out just to be sure it's completely
gone. It's not an easy transition for me.
Speaking of transitions...It's:



Some of your kids have already headed back
to school. Some of you are just about to
send your kids back to school and for some
of you, it will be your child's very first
day of school and a brand new experience for
your child and you.

When you have a child who has Agenesis of
the Corpus Callosum there can be numerous
decisions and choices to make concerning
your child and School. On top of that,
there are also many concerns that we,
as parents of kids who have ACC, wrestle
with in our minds with respect to how
our kids will handle while they're in
School.

Below are some links to information about
Agenesis of the Corpus Callosum and school
that have been posted here before but may
be helpful to view again since this is the
Back to School season:

ACC & Your Child At School-Part 1

ACC & Your Child At School-Part 2

ACC-Social Skills & Challenges
If you would like a copy of this document please E-Mail me.

ACC & Me Children's Book

Educational Suggestions For Children With ACC:
A Beginning


Considerations For Educators Of Students With ACC:
This document is written by Mr. McCallum and
he is a teacher who taught a child with ACC in
his classroom. He offers detailed and valuable
information. The web page version of this
document is no longer available. If you would
like to receive a copy of “Considerations For
Educators Of Students With ACC” by Mr. McCallum
please E-Mail me. In your e-mail it is helpful
to know if you are a parent or a teacher
requesting the information.

And now it's my turn to get my own child,
Matthew, who has complete Agenesis of the
Corpus Callosum, ready for school and get
back into the swing of school and learning.

I hope that each one of your kids will
have a very positive and fun-filled school
year. :)

I have some very fond "My Favorite Matthew
School Memories" and thought I would end
with one of them:

I opened his backpack one day after school
and found a little handwritten note addressed
to Matthew from a little girl in his very
early grade school mainstream class...


"Dear matthew

You are a smart, charming kind. You make
me have fun at resses because you play with
me. You make me so happy to have you as a
friend. You have a rilly best frind right
with you avery were you go. gas what thats
me Brenna"

from sweet Brenna"

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.

Saturday, August 22, 2009

ACC-Read All About It




Every now and then I type the words:

Agenesis of the Corpus Callosum

on a google search and look for any new
information or articles.

Well, tonight I found a story in the Fort
Frances Times Online about a four year old
boy, Tanner, who is completely missing his
corpus callosum and his septum pellucidum
that I would like to share with you.


"Young Tanner now 'just a typical kid'

Wednesday, August 19, 2009
By: Heather Latter, Staff Writer

Tanner McCormick has spent the first few
years of his life battling the effects of
being born with an interhemispheric cyst
inside his brain, but miraculously the
now four-year-old is just like any regular
kid.

“He likes to do all the things a typical
boy his age likes to do,” said his mom,
Kristen. “He just doesn’t stop all day
long—it’s amazing.

“And he has such an incredible imagination.”

The youngster likes watching “The Wiggles,”
playing video games, going swimming and
fishing, and telling knock-knock jokes.
But his favourite toy right now is the
small drum set he received for his birthday
on Aug. 4 because he can “rock out” on it.
Tanner also has a very good memory.

“He is really good at remembering names
and people—he doesn’t forget anything,”
his dad, Mike, explained.

“He brings out the best in everyone,” added
Kristen. “He’s so friendly. He has to stop
and talk to everyone when we go to the store.”
But although Tanner is doing extremely well
today, he’s had a life full of struggles.

When he was born, the cyst, which was
discovered when he was about four months
old, had made his head swell to the size
of an average one-year-old’s. He suffered
from two conditions called Agenesis of the
Corpus Callosum and Agenesis of the Septum
Pellucidum—meaning he was missing two parts
of his brain.

The cyst had halted the natural development
of particular areas of the brain.
Due to these conditions, Tanner had a shunt
inserted into his brain. While he kept
pushing onwards, the youngster has struggled
with other complications, such as poor
eyesight and ear infections to name a few.
The doctors also suspected Tanner would have
serious delays and handicaps in his development,
both physically and intellectually. But he’s
certainly overcame these obstacles, perhaps
being just slightly behind his peers.
Tanner didn’t seem to have many problems
speaking or with vocabulary, and he’s
obviously a very smart boy. He did spend
a year using a walker or “scooting” to get
around, but just before last Christmas he
began walking well on his own.

“Now if there are people who don’t know his
story, they don’t suspect anything is wrong,”
his dad remarked.

“But we still go to Winnipeg every three
months and there is a pediatrician that
follows him,” explained his mom, noting
that Tanner has had a number of surgeries.
“Unfortunately, even simple things aren’t
so simple with him.”
Tanner had tubes put in his ears three
times and had his adenoids removed, but
that caused some abnormal bleeding. In fact,
from last August-December, the youngster
lost 12 pounds and was very sick.

“You get thrown back into reality,” mom,
Kristen, said. “When he gets sick so quick,
it’s a reminder how life can change.

“We try not to take for granted how well
he is doing.”

While keeping a close watch on Tanner’s
eyesight, doctors also have been looking
for seizure activity in his brain and also
the possibility of scoliosis.

Kristen stressed the doctors in Winnipeg
have been amazed by the progress Tanner has
made in four short years.

“They just sit and watch him in amazement,”
Mike recalled.

The couple indicated the doctors can’t
fully explain why Tanner has been able to
overcome physical and intellectual obstacles,
when they originally believed he would never
walk or talk.

“The only way they can explain it is that
his brain has been able to find new pathways
since there are many ways the neurons can
connect,” Kristen noted.

Although Tanner would be eligible to start
junior kindergarten this year, his parents
have decided to wait another year.

“Intellectually, he’d be all right,” Kristen
said, though citing he may have a problem
physically. Besides having only been walking
on his own for less than a year, Tanner has
trouble with transition.

And since he doesn’t forget anything, if he
were to fall or get bumped, it could lead
to a negative experience at this point.

“I’m lucky to be able to stay home with him,”
his mom added.

But even though Tanner won’t be joining his
peers at school this year, he certainly will
be a busy boy. In fact, he’s already had
many exciting experiences and accomplishments
under his belt.

He’s flown in an airplane, and on a recent
fishing excursion caught a “big, big, big”
walleye. He also takes private swimming
lessons and will begin five-pin bowling
this fall.

Tanner even was a special guest and
participant in the annual Ronald McDonald
House Hope Couture Fashion Show and Dinner
in Winnipeg back in May. “It was a really
big deal. There was over 600 people there,”
his mom said, noting Tanner, along with his
brother, Shaye, walked the catwalk wearing
their spiffy outfits.

“It was so nice to be a part of it since
I don’t know where we’d be without the
Ronald McDonald House,” she remarked.

And most recently, Tanner was crowned the
2009 Mini-King at the Emo Fair last week.

“We want to give him the opportunity to do
anything he wants to do,” Kristen stressed.
“We don’t want him to feel any different.”

She also said Tanner’s brothers, Shaye and
Jonah, have been incredible with him—and
that the support they’ve received from family,
friends, and the community has been
overwhelming.

“The community is just amazing,” Kristen
enthused. “People are always showing their
concern and asking for updates.”

She admitted the family sometimes struggles
with the questions of why and how this
happened to Tanner.

“But all I can come up with is everything
happens for a reason and I would never
change any part of it,” she said. “We just
take it one day at a time.

“There are some days that are rough and we
know his journey is far from over, but it
makes every moment worth it.”

Young Tanner now 'just a
typical kid'


Read a previous article about Tanner at 1 year old