Thursday, December 31, 2009

Accomplishments & ACC



Three years ago when I started homeschooling my
child, Matthew, who has Agenesis of the Corpus
Callosum, I decided to keep a written documentation
of homeschool progress notes. Each month I make
note of all the days that Matthew learned something
new or accomplished a task or goal...big or small.

Honestly, I am not the most efficient or
steadfast recordkeeper but I can tell you that
when I look back over the past three years of
homeschooling progress notes it makes a world of
difference when your child's progress is staring
you right in the face in writing...one glorious
page of efforts and accomplishments after another.

Matthew is 16 years old, however, developmentally
he is much younger and he is nowhere close to his
actual grade level. In fact, much of Matthew's
progress both developmentally and educationally
(especially when he was really young) seem to move
at the pace of a snail at times and sometimes that
slow pace comes to a screaching halt with a very
long plateau of what seems like no progress or
very little.

But when you actually keep a record of each and
every little thing that you see your child learning
and doing and then are able to refer back to it
over the course of a year, it is amazing to see
all of the very beautiful and wonderful things
that your child learned and can do.

I'm glad that I decided to keep a record of
Matthew's accomplishments.

On those days when you feel like your child is
behind or you get caught up in the
'feel like
they aren't making much progress blues'
it is a
blessing and eye opening experience to pull out
that document listing all their progress and remind
yourself of the abundance of learning and goals
that your child accomplished.

As you ring in the New Year take the time to
reflect on all of the fantastic things that
your own child who has ACC learned and can do
and keep your focus on each and every small
accomplishment that they will continue to make
in 2010!!

HAPPY NEW YEAR!!

Saturday, December 12, 2009

Agenesis Corpus Callosum & Growth



Recently I responded in an online Agenesis Corpus
Callosum (ACC) e-mail support group to the
following question and thought I would share
it here:

Can Agenesis Corpus Callosum Affect Growth?

I am also the mom of a boy, Matthew, who is adopted.
We adopted him at birth and found out he had ACC
when he was four months old. I think every parent
will agree with you that receiving the diagnosis
of ACC for their baby/child is a shock and moving
through all of the overwhelming emotions, questions,
concerns is not an easy task. I cried A LOT during
the first year after my son was diagnosed and went
through tidal waves of emotions...but it did calm
and become easier.

YES, when a child has ACC they may also have
growth problems and it can affect their growth.
Because ACC can affect growth and cause other
various hormone issues, it is very important that
child be seen by a good pediatric endocrinologist
to rule out any problems.



Some children who have ACC require growth
hormones. My own child, Matthew, began seeing
a pediatric endocrinologist when he was younger
because he was very short and nearly below the
growth chart on his height. His weight was fine
but he could wear the same shirts and pants for
two plus years and always looked about two years
younger than the kids in his class. He had various
blood tests to check all of his hormones and he
also had an x-ray of his wrist/hand to check the
bone age. All of his hormones were fine and his x-ray
showed that his bone age was a little over two
years behind his real age. He was (and still is)
followed every year by his pediatric endocrinologist
for a check-up. Also, when a child has ACC they
may not start into puberty or may start puberty
too early or too late. It was explained to me
that because the pituitary sits very close to
where the corpus callosum should be (in the middle
of the brain) that there is the possibility that
the pituitary may also have a problem and may not
function properly. My son started into puberty
without any medical intervention or need for
hormones and is doing fine. He didn't start
puberty until about age 14 years.

ACC is a midline defect and because the corpus
callosum is in the middle of the brain there
is the possibility that the child can have
other midline defects (such as a cleft lip
and/or palate. Another example is the heart
since it is midline in the body. My son had
a heart murmur and because he has ACC he was
seen by a pediatric cardiologist and had tests
to rule out any heart defects/problems.

ACC can also be seen with other medical problems
such as chromosome anomalies, genetic syndromes,
metabolic disorders and optic nerve or eye
conditions.

When a child has ACC they should be seen by a
pediatric ophthalmologist to rule out any optic
nerve problems and/or eye problems. Sometimes
kids who have ACC have a wandering eye (wanders
out or wanders in) (exotropia or esotropia) and
they can prefer to use one eye to focus instead
of using both eyes together. They are at risk
for having amblyopia (permanent loss of sight)
if they continue to use only one eye to focus
because the brain will shut off vision permanently
to the eye that is not being used. It is my
understanding from our own pediatric
ophthalmologist that the risk of amblyopia is
possible until about the age of eight years old
in a child. They are followed VERY closely by a
pediatric opthalmologist to be sure that the
child is using both eyes to focus and to help
the weaker eye become stronger using various
ways...such as patching the stronger eye to force
the weaker eye to be used. Sometimes a child will
require surgery to the eye muscle. My own son did
require eye surgery (on his right eye only) after
patching was not effective.

Below is a link to a list of medical options to
consider and discuss with your child's doctor(s):

http://scenicbeauty.tripod.com/WhatComesNext.html

Please feel free to e-mail me anytime. I am happy to share anything about my own son, Matthew, and our experiences with ACC.


Sandie *Mom to 16 year old Matthew with complete ACC*

Disclaimer:
The information found on this web site is written based upon my own personal experiences and comes from what I have learned while dealing with my son's ACC. Please seek the advice of a qualified physician for medical advice.

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

The ABC's of ACC
If you would like a copy of this document please E-Mail me.

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

Monday, August 17, 2009

Invitation for Adults with ACC


Meet Adults with ACC Stories

If you are an adult who has ACC or a corpus
callosum disorder, I invite you to share
your own personal story on this ACC blog.

I am the mom of Matthew. He is 15 years old
and he has complete ACC. He was diagnosed
with ACC at four months old by a CT scan.

In April of 2009 I created this ACC blog.
I wanted to create a site that could offer
positive information, teaching tools, etc
and an interactive place where other people
could post comments and give their own
valuable and insightful information in an
effort to help others.

One of the topics that was created is:

Meet Adults With ACC

Lynnea, the person who founded ACC Awareness
Association, Inc. (ACCAA), and who also
created a wonderful ACC Message Board forum,
very graciously wrote her own personal story
about life with ACC and shared it on this
ACC blog in June.

I can tell you that Lynnea's story sparked
the interest of MANY people who read
(and continue to read) it. Her story is
especially helpful and insightful to parents
who have a child with ACC but is equally as
helpful in reaching out to other adults who
have ACC and helps give teachers a much better
understanding of ACC (as seen through the
eyes of a grown adult) what it was like as
a child with ACC in school. The ways in
which your own story can reach other people
is endless...



If you are an adult who has Agenesis of
the Corpus Callosum or a corpus callosum
disorder, I invite you to tell your story
so that others can gain insight and see
through your very own perspective what it
is like to have ACC, to read your own personal
struggles, your accomplishments and whatever
else you may choose to share about yourself.

If you are an adult with ACC who is interested
in sharing your own personal story on this
Agenesis Corpus Callosum blog please send me
an E-Mail.

Here are some things to consider including
when writing your own story that give insightful
and extremely valuable information to other
people who will read it:

When did you find out that you have ACC? How old?

What did you struggle with in school?

What did you enjoy most and do well at in school?

Did you struggle with social skills in school?

Did you make friends easily in school?

Do you still struggle today with social skills
as an adult?

Did you attend a mainstream classroom?

Did you receive Special Ed resource help?

Can you ride a bike and drive a car?

Did you attend college? Did you get a degree?

Do you have a job and if so what do you do?

Are you married? Single?

Do you have children?

How does ACC affect you today as an adult?

What do you enjoy doing the most in life...
What are you passionate about?

Do you have a specific goal or dream that you are passionate about and would like to achieve?

And, if any of you would like to read Lynnea's
story...you can read it below:

Meet Lynnea - An Adult with ACC

Thank you again, Lynnea, for sharing such a
wonderful story. *hug*

If you are the parent of a child with ACC or
someone else reading this who is interested in
reading and learning more about the perspective
of an adult who has ACC please show your interest
and encouragement (by posting a reply here) and
let the adults who have ACC know HOW
MEANINGFUL, helpful and insightful their stories
are and how interested you are to hear their own
personal story.


For those of you interested in viewing the
ACC Message Board you can find it here.

Thursday, August 13, 2009

Lose The Training Wheels



Some kids who have Agenesis of the Corpus
Callosum struggle with learning to ride a
two wheel bike.

Awhile back I did a blog post about this topic
and I received input from a parent who has a
child with ACC who highly recommended a summer
camp program called:

Lose The Training Wheels

Since then several other parents, who also have
a child with ACC, are saying wonderful things
(in another support group I belong to) about this
summer camp program. They have had successful
results (and their child with ACC has learned to
ride a two wheel bike) after having their child
attend the Lose The Training Wheels summer camp
program.



Lose The Training Wheels is a summer camp program
that provides camps across the US and in Canada.

If you are interested in finding out more
information you can go to their website and the
Lose The Training Wheels Camp schedule below:

Lose The Training Wheels

Camp Schedule

If any of you are interested in reading the ACC
blog post about Riding a Bike you can find it at the
link below. It also contains information about an
adaptive trike, using the undersized bike approach
to learning how to ride a two wheel bike and it also gives
input/comments from several parents who have a child with ACC:


Riding a Bike

Monday, August 10, 2009

Music Therapy


I currently take my son, Matthew, who has
complete ACC, to Music Therapy and I have
taken him to music therapy in the past as well.
(For my son) I find music to be a key to unlock
the doorway to learning and for helping him learn
how to express himself. This has proven to be
true for my son since he was very little. I do
notice a huge difference in his ability to learn
new things when music is involved in the learning
process. Matthew is non-verbal with only a handful
of words.

Many parents comment that their child with ACC
has a much higher receptive language (ability
to understand what they hear) than their
expressive language.

Matthew's main form of communication is through
an augmentative communication device (DynaVox V)
and through sign language. But, I continue to
work with Matthew on verbal language as well.

It has been my experience that music therapy is
different for each child (no matter what their
diagnosis is) and you will set individual goals
to help them learn (through music) what it is
you hope that music and songs will help to
accomplish.

Of course, when a child has ACC there is no
guarantee that Music Therapy will produce
language but there is also no harm in trying,
I believe.

Personally, I am a huge fan of music and
music therapy for helping my own child learn.
Since he was a baby I have sung little silly
made-up rhyming songs to help him learn body
parts and other things. For whatever reason,
music captures Matthew’s attention and helps
him relate the song to a body part or something
else we are working on learning much more easily
than spoken words.

Each person diagnosed with Agenesis of the
Corpus Callosum is so different in terms of
HOW they are affected as I am sure many of
you already know. Some kids with ACC talk,
some kids do not talk. Some kids struggle to
get their words out in a complete sentence or
in the right order. Some kids struggle for
the right words.

To my knowledge there is no specific research
done yet on the effects of music therapy on
people who have ACC.

With the diagnosis of ACC comes what so many
parents refer to as the “wait and see” period.
Waiting to see what my child would be able to
do or not do was NOT easy for me and was something
I struggled with for quite awhile. But our kids
amaze us ALL THE TIME with the things they learn
and it's so wonderful!!

I would definitely try music therapy with a
child who has ACC to see if music might possibly
be the way to help unlock and encourage verbal
skills as well as help with other areas of learning.

I am a believer in giving a child with ACC several
avenues and tools for helping to encourage language
such as Sign Language and augmentative
communication devices as well as continuing to
work on verbal language.

I still sing songs today with Matthew to help him
learn something new that we are working on and I
think it’s amazing how quickly he is able to learn
through a song.

I began homeschooling my son two years ago and I
found a wonderful website called Listen and Learn.
It is written by Rachel Rambach, a Board-Certified
Music Therapist. Rachel is experienced working with
children who have disabilities and specifically
with kids who have Autism. She offers free full
length songs on her website to sing with your
child. I have found the website to be a big
blessing and can’t say enough good things about
Rachel, her website and what she does to reach
out and help so many kids around the world. You
may want to take a look at the website and see
if any of the songs there may help your own child.

Listen and Learn Music

If you click on the link above and scroll
half way down the page you will see “labels”
on the left-hand side. The songs are categorized
into topics so if you click on a topic all of
the songs under that specific topic will appear
for you to listen to.

See Rachel and Music Therapy on the local news:



What do YOU think about Music Therapy?

Do you have a child who has ACC that has
experienced Music Therapy with favorable results?

Are you a Music Therapist who has worked with
a child who has Agenesis of the Corpus Callosum
(ACC) that may care to share?

Does your child with ACC learn more easily
through music and songs?



There is a previous blog post about Listen and
Learn Music that can be found here.

Monday, August 3, 2009

Puberty



When my child, Matthew, who has complete Agenesis
of the Corpus Callosum was very little I was told
by one of his doctors that puberty can sometimes
be affected due to the corpus callosum being
missing. It was explained to me that because the
corpus callosum is midline in the brain and it sits
very close to where the pituitary is there is a
chance that the pituitary may also have a problem.
The pituitary is what controls the hormones and
begins the onset of puberty.



A child's growth can sometimes also be
affected as a result of having Agenesis
of the Corpus Callosum. Some kids with
ACC actually need to go on growth hormone
to help them grow.



Matthew actually began seeing a pediatric
endocrinologist because he was very small for
his age. While his weight was in the normal
range on the growth charts his height was at the
lowest percentile on the growth charts. The
doctor did a hand and wrist x-ray on Matthew to
check his bone age. She also did a blood test to
check all of his hormone levels. Matthew's hand
and wrist x-ray showed that his bone age is two
years behind his real age. His hormone levels
were all normal. After additional questioning
and examination by his doctor it was determined
that all is well with Matthew's growth.

Matthew's pediatric endocrinologist sees Matthew
on a yearly basis to be sure that his hormones
are functioning normally and to be sure that he
entered into puberty at a normal time. She also
continues to monitor his growth. She explained
to me that sometimes kids who have ACC may enter
into puberty way too early and that if that
happens puberty will need to be delayed. She
also said that some kids with ACC can enter
puberty late and some may not enter puberty
at all and if a child who has ACC doesn't enter
into puberty then a pediatric endocrinologist
would be able to give them the hormones necessary
to help puberty begin.

Matthew began entering into puberty somewhere
around 14 years old but it wasn't until about 15
that he was really in puberty. At his last
endocrinologist appointment his doctor checked
all of his hormone levels and they were right
where they should be.

I asked her if some kids who have ACC might
start to enter puberty and then it slows down
or stops without fully entering puberty. She
told me that is also a possibility but that in
Matthew's case he is doing very well and she
doesn't see that happening in his case.

When a child has Agenesis of the Corpus Callosum
there is the possiblity of problems with puberty
but doesn't mean that it will happen. If you have
concerns about puberty or growth it is always a
good idea to discuss them with your child's
pediatric endocrinologist.

Tuesday, July 28, 2009

Overheating



This is the 7 day weather forecast where we live!
It's definitely not typical summer weather for
the state of Oregon.

It got me to thinking though about the issue of
overheating. Of course, overheating is a concern
for anyone in these excessive temperatures that
we're having outside now.

Many times when a child has Agenesis of the Corpus
Callosum they can have difficulty with overheating
and regulating their body temperature when it's
warm outside or hot.

My own child, Matthew, who has complete ACC
overheats easily when it is warm and not just
on hot summer days.



I can remember clear back to when he was a baby in
my arms around 9 months old he would get listless
if he got too warm and he needed to be cooled off
immediately by stripping him down to his diaper and
getting out of the heat and sun and into a much
cooler temperature.

He rarely ever wore long sleeved shirts all year long.
In fact, you will almost always still see Matthew in
a short-sleeved shirt year round.

Even in the winter time if a room is kept too warm
he will begin to overheat, get red cheeks, sweaty
and I need to get him undressed and help him cool
himself off.

I have also always had a difficult time being sure if
Matthew has a fever because sometimes he won't
even be warm or hot on his skin.

When he was little he had a few febrile seizures
that were very scary and I never knew he even had a
fever until after the seizure was over. It wasn't
until then that his body would get hot and show
outward signs of fever.

I learned when he was younger to be alert for any
signs of Matthew being maybe a little bit tired or
slower and even though he didn't feel warm or seem
really sick I would take his temperature rectally
and this is the only way it would show a very high
temperature. Taking his temperature rectally was
my only way to know for sure if Matthew had a fever
when he was sick.

Matthew's fevers are not controlled with Tylenol
alone. It takes using Tylenol and Motrin on a rotating
schedule (per doctor's instructions) to keep his
fever under control when he is sick. Even using this
method of rectal temperature taking and double
dosing with fever reducing medicines, he still
had a febrile seizure a few times when he was
younger.

I have seen some other parents who have a child
with ACC in an e-mail support group I belong to
also mention that their child overheats easily
when they get too warm.

It definitely doesn't take much for Matthew to
wilt in the heat of the sun or in a room that is
too warm in any season of the year.

Needless to say, today we're inside the house
with the air conditioner going and Matthew is
happily playing his Casio keyboard in his room
where I just heard a few giggly laughs bounce
off his walls and warm my heart.

Monday, July 20, 2009

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. :)

Friday, July 17, 2009

Comments



Each one of you who take the time to read
and explore the pages of information about
Agenesis of the Corpus Callosum and corpus
callosum disorders have a wealth of information
of your own to share with other people. You
have the potential to create a more informative
place for other people who are reading what is
on the pages within this blog.

The comments that come from each one of you
offers another piece of valuable information
that reaches out to more people in so many
positive and wonderful ways.

If you are the parent of a child with ACC, the
grandparent, a family member, a therapist, a
teacher, a student with ACC, an adult with ACC,
you have the ability to share some helpful tip,
some insight, some teaching tool that works,
some encouraging words, some very valuable
information that has the potential to reach out
and help another person.

If what you share helps only one person searching
for insight and information wouldn't that be worth
it?

And, if your comment, your tips, your knowledge,
the information you share through your personal
comment helps more than one person...then all
the better.

I welcome you to leave comments whenever you
have something to share and encourage you to
comment as often as you would like.

In fact, I set the blog up so you don't even
need to be a blog member or sign up. You can
easily post a comment anytime:


click on "comments" at the bottom of any post;

type your comment in the comment box;

click the pull-down menu in "Select Profile" box;

scroll all the way to the bottom where it
says "Anonymous" and click it;

then click on "Post Comment" and that's it.

Of course, you also have the other options
when leaving a comment that include signing
in with your blogger account or using your
name.

So when you're reading and you have something
to share, go ahead and say it...


for the kids.

Sunday, July 12, 2009

What's On Your Mind?



Please feel free to use this page as a place
where you can share what's on your mind with
respect to Agenesis of the Corpus Callosum or
a corpus callosum disorder.

Do you have a question?
Would you like information about something?
Do you have a story to share?
Are you or your child struggling?
Did your child learn something new?
Are you looking for advice?
Do you want to find support?
Does your child have feeding issues?
Do you have a particular concern?

Whatever it is that is on YOUR mind
that you would like to share...
well, this is a place to share it.

So go ahead and...