The Uncertain Road...



While browsing through the archives of an
Agenesis Corpus Callosum support group that
I belong to I came across some messages that
I had written in the past about my child,
Matthew, ACC and my feelings.

I contemplated whether or not to share some
of my past personal feelings here for others
to view.

After careful consideration, I decided
to give it a go in the hopes that it might
help someone.

This particular post from the past is
something I wrote when my child was 7 1/2
years old. It was written in response to
the parent of a baby with ACC.



September 5, 2001

"I just read your e-mail and sympathize with your
frustration and confusion. I am also a parent of
a child with complete ACC. My little boy was
diagnosed with ACC when he was four months old.
I was beginning to question his development before
he was diagnosed just a little bit. I remember
asking some of my friends about when their kids
rolled over because Mathew was not yet even
beginning to come close to rolling over....but I
never imgained that he would have this rare and
baffling condition when his pediatrician ordered
a CT scan. It was shocking and needless to say...
my world turned upside down.

You wrote something that I think every one of
us parents can relate to....

"Wait and see what is gonna happen.
You know it really makes me
crazy knowing that everything
could be okay ---- but no, wait ----
he could have major problems."

I am quite sure that most every parent wishes
that there was some magical type of test that
could reveal EXACTLY what they could expect in
terms of how ACC will affect their child.

When Matthew had his first EEG to rule out any
seizure activity and the results were negative
indicating that he did not show any signs of
abnormal brain activity or seizures I felt
relieved...and THEN...I was told that he is still
at risk for seizures happening so it was like the
good news was once again said with the frustrating
news on top of it. For me, the wait and see,
the wondering, the unanswered questions were
incredibly difficult to deal with.

In the beginning of my son's diagnosis and
numerous doctor appointments....I was also a
wreck. I did not like going to his doctor
appointments either..mostly because I did not
want to hear one more thing that was wrong
with him.

When I was at his developmental evaluation...
he was having his ears tested because ACC can
affect their hearing. I remember the doctor
coming back in the room and telling me that
they suspect hearing loss in Matthew's right ear
and INSTANTLY I thought to myself...NO WAY!! I
didn't believe it and didn't even want to hear it.
I just shut him out and wasn't going to believe
what I just heard. After testing by an (ENT)
ear, nose and throat doctor...Matthew was found
to have fluid behind his ear...which was drained
and a tube was put in his right ear only.
They did an elaborate hearing test called an
ABR (auditory brainstem response) and Matthew's
hearing tested normal in his right ear and left
ear. It was a huge relief. I was very happy to
find out such good news...and needed to hear
those good things. Those good things can so easily
be crowded out by the other not so good news.

In the beginning of Matthew's diagnosis I would
sometimes want to read and know information about
it....and then other days I didn't want to think
about it. I was apprehensive in talking to other
parents. I was so scared I would hear something
else that MIGHT happen as a result of ACC...
and it scared me. I had trouble reading about
other children who had really severe problems
who had ACC. I think everyone is different
in how they deal with the news of ACC or with
the news of any type of condition or major problem.
You will know what is right for you and you
might go through days of needing to know more
information and days of blocking it all out and
not wanting to hear, think or see anything else
about it.

I found it helpful to have a developmental
pediatrician to talk with concerning Matthew's
condition. We are lucky to live very close to a
teaching hospital in Oregon
(Oregon Health Sciences University) and they
already knew of Matthew's condition and had seen
other patients with ACC.

I have found therapy services to be a great
benefit for Matthew. I chose to put Matthew in
physical therapy when he was six months old. He
also wasn't reaching for toys yet. I began
receiving Early Intervention services through
the county and they were very helpful in showing
me ways to encourage and help him reach for toys
and other things. We would roll up towels and
put them under each of Matthew's arms while he
layed on his back. Then I had one of those baby
gyms with hanging toys and the elevating of his
arms REALLY helped in giving him a little bit
of an advantage and he began to use his arms to
reach for the toys. Early Intervention therapists
come into your home and work with the child and
there is no charge.

I think that therapy indicates that there is
some kind of problem...and admitting that there
might be or is a problem is not always easy to do.
I wanted to believe that Matthew would not be
affected by the ACC.
I went through MANY emotions....so many emotions.

The hardest part is the "wait and see"....and
while it is INCREDIBLY difficult right now....
I can tell you that it does get better with
time...it does."



Sandie

*Mommy to 7 1/2 year old Matthew with ACC in
Oregon (USA)*