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.

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. :)

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.

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...

ACC Support Message Board

If you are an adult with ACC or the parent
of a child who has Agenesis of the Corpus
Callosum or a corpus callosum disorder, being
involved in a support group can help put you
in touch with other people who can relate to
you and people who have a better understanding
of what it means to either have ACC or have
a child with ACC.

There are some very wonderful ACC support
groups out there.

Now there is a new support group for Agenesis
of the Corpus Callosum that has recently been
created by Lynnea, an adult who has ACC.
Lynnea is the founder of ACCA which stands for
ACC-Awareness.

The support group is set up as a message board
with sections for Parents of Kids with ACC and
Adults with ACC. You can click on the various
topics and read what others have to say then
post your own reply if you wish. You can also
start a new topic.

Go check out the new ACC support message board.

Low Tone

When Matthew was a baby (before he was
diagnosed with agenesis of the corpus
callosum) the doctor wrote in his chart
notes that he was "floppy." I didn't
discover this until I made the choice to
change pediatricians and I got a copy of
Matthew's chart notes. I later learned
that "floppy" also means low tone.

Then Matthew was diagnosed with ACC when
he was four months old via a CT scan.

Matthew was very low tone as a baby and
toddler and a little guy. He had very
little strength in his muscles to do
what most little babies and toddlers
can easily do.

I can remember wondering if Matthew would
ever gain more strength in his muscles and
I worried that he may struggle with
low tone without significant improvement.

When I would change his diapers at an
age where most babies would wiggle and
squirm and struggle to get away, Matthew
would move only a little bit and I could
easily keep him where I needed him to be
because he didn't have the strength to
get away.

As I was sitting at the computer today
that once little guy (who will always be
little in my eyes) stood next to me and
I was playing a tickle game with him. I
reached out both of my arms at him with
wiggly tickle fingers and began to sing
a silly song about "Now I'm gonna tic..."
and those two little boy hands grabbed my
own arms and prevented me from tickling
him while he was laughing at our little
game.

He is already stronger than me and definitely
is no longer that "floppy" and low tone
little guy I once worried about.

Now it's the other way around. I feel like
a little girl up against my own very sweet
and super silly BIG boy.

Uniqueness!

"Today you are You, that is truer
than true. There is no one alive
who is Youer than You."

~Dr. Seuss


Each one of us is unique.

We are each individuals with
distinct interests, abilities,
personalities and peculiarities.

And yet it seems that too often
we expect or assume that each
person will learn in a one size
fits all sort of way.

When I was in school I turned my
paper sideways when I wrote. I am
right handed. I could print and
write cursive very well this way and
yet teachers would continuously turn
my paper back to a vertical (up-down)
direction. I could not write as well
this way. It felt awkward to me and
my penmanship was not as good. I would
turn my paper sideways to the left and
begin writing again. As an adult, I
continue to write using this same style.

The unique and individual learning
styles of each person (and the way we
do the things we do) is important
and should always be recognized,
supported, celebrated and encouraged.

When a person is born missing a body
part that you are able to visibly see
such as a missing arm or arms, a missing
leg or legs, missing fingers/hands they
learn to compensate and use their body
in different ways to accomplish certain
tasks and daily skills.

And yet when a child is born missing their
corpus callosum, the middle section
of their brain, a body part that is not
visibly seen by others it becomes more
difficult for people to understand
why the child or adult does something
the way they do it.

To me, it is the same thing as the person
who is visibly missing a body part. Each
person is compensating for the part that
is missing and finding another way to do
a specific task or accomplish what they
need or want to do.

For example: My son, Matthew, who is
completely missing his corpus callosum,
loves spinner tops. Spinners are a
favorite toy of his and have been for
many years. When he was younger I
tried and tried to teach him to spin
the spinners the way I do it...by
holding the tiny wooden peg in the
middle with your thumb and forefinger
then twisting. It didn't work for him.
It was not Matthew's way to spin the
top. In time, through his own
determination and his own discovery
(by using the first three fingertips of
his right hand and placing them on top
of the flat wooden spinner top then
moving his fingertips in one quick
motion) he learned to spin the top.



I say poe-tay-toe and he says poe-tot-oh
but we both spin the spinner top.

He isn't able to spin the top my way
and I have tried and tried to spin
the top as fast and as good as he can
using his way but I am not able to.

One of the many things that I have
learned from my own child, Matthew,
who has Agenesis of the Corpus Callosum
is that he leads the way when it comes
to his learning style and needs. I
must be a careful observer and be ready
at any time to take a detour and go in
another direction whenever necessary. I am
always thinking about how I can teach
him something and what method will work
based upon his signals, motivations and
cues.



Sometimes Matthew learns through a method
I choose to teach him and other times he
learns something that is one of his goals
by a completely different method that we
just stumble upon.

For example, Matthew loves using the computer.
We have a goal for him to learn how to under-
stand and properly use "yes" and "no" when
asked a question. I have tried to help him
reach this goal through the use of his
communication device in various ways (since
he is non-verbal) but I put it on the back-
burner because he has so many goals and this
particular goal was stumping me with respect
to HOW to try to help him learn "Yes" and "No".

Then when we discovered the Living Books
interactive animated story CD roms
(something Matthew loves using) I realized
that through LOTS of repetition in the
storybook game he began to understand the
concept of yes and no because each time I
tell Matthew it's time to stop the storybook
game he clicks on "QUIT" and sees a screen
with a "YES" and "NO" and then hears the message:
"Are you sure you want to quit?" Then he has
two choices to make..."YES" and "NO".
"YES" is written underneath a cute picture
that is different on each game. Sometimes it's
a fish and the fish will be shaking it's head
up and down for "YES" and the "NO" will have
another animal shaking it's head side-to-side
for "NO". This was the magic and miraculous
method to help teach Matthew "YES" and "NO"
and there couldn't be a better way for him.
In fact, he so clearly understands now what
"Yes" and "No" means that when he hears the
message on the game that says: "Are you sure
you want to quit?" he sneakily moves his mouse
over to the "NO" because he doesn't want to
quit even though Mom says it's time to quit.

He's learning what yes and no means and it's
even carrying over into other daily activities
such as Matthew shaking his head up and down
now for yes when I ask him a question.
It's wonderful!



Be respectful of the child's unique abilities
and be a careful observer of the child
in all they do, their motivations, what is
comfortable for them, and then nurture those
things within the child. If possible try to
blend them into something that may allow
that child to gain positive improvement in
a certain area or task without asking the
child to completely eliminate their own natural,
rhythmic, comfortable ways and abilities that
flow from within.

Celebrate the uniqueness in your child
today and let them be the guide to open
the door into their wonderful world of
learning.