Music, Motivation & Mentor

A very heartfelt story was shared several months
ago by the mom of, Kevin, a boy who has complete
Agenesis of the Corpus Callosum in the ACC-Listserv
support group I belong to. With her permission
I am posting it here:

"Just wanted to share something with all of you. Kevin
has always been interested in music. He tried playing
in the band when he was in the seventh grade, but after
a semester, his band director took aside and told us
that he was not able to play in the band. He said that
he just didn't have enough coordination to master the
instrument. We had been told by his drs. that
this was probably going to be true when he was diagnosed
at 8 yrs. old. So, we weren't surprised. His twin
brother played the tuba all through high school and
Kevin started being the football trainer and continued
all through high school. Casey, his twin, is not C-ACC
like Kevin.

Casey became interested in playing the guitar when
he was in high school and got pretty good at it by
teaching himself. Kevin wanted his brother to teach
him how to play also. But Casey didn't spend a lot
of time teaching him and got very frustrated. so that
was ended quickly. Now at 22 yrs. old Kevin met a
friend that is in a band who is looking for a guitar
player. He told Kevin that if he wanted to join he
would teach him to play. The first advice he gave him
was to buy a left-handed guitar. He started giving
Kevin lessons once a week. He has been teaching him
for about 3 months now. I heard Kevin playing the
guitar in his room today and he was excellent! He
has surpassed his brother's guitar skills. What a
thrill it was to listen to him play.

Moral of the Story: Never limit what your child
cannot accomplish because a dr. said it wasn't
possible. I am definitely guilty of that. But I am
working on it."

Cherry, mom to Kevin, C-ACC, 22, Casey 22, and David, 26

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!!

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..!