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 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!!


Why 2009 Bit.

Someone once posted that there's no WAY a person could hate an entire year.

Oh, wanna bet?

We ended 2008 with a NICU stay and a stressed out mother- me. Literally the first few weeks into 2009 we met with Sainted Realtor and began the process of putting the house on the market. Georgie was still in newborn clothes when we packed up the pod unit. Around Camille's third birthday, we offically put the house on the market and were house hunting by Valentine's day, when Georgie was 2.5 months old.

House hunting was VERY stressful and we delt with so many morons it wasn't even funny. If you think keeping a house immaculate with three small children, leaving at the drop of the hat so other people could view, and not buy, your house, is easy... you don't have kids. I had to diaper, change, feed, entertain them all out of the house while bathing, washing clothes/diapers and clean up all at night. It sucked.

Moving itself wasn't so bad but, yes, stressful. I was sick when we moved in and had to unpack with a fever and chills. Then you have to get RID of all the packing material. Plus, it was a new area so we had to find new friends, new grocery stores, new shopping, schools, a parish, etc.

Of course, we traveled and traveleing with three kids is not a vacation, esp when they are back to back with school starting as soo as you get home.

As soon as we found ourselves in a new routine, I discovered I was preg which is hard on my body, tiring, and stressful because I was scared of another NICU baby.

The first year after the NICU is the hardest and THANK GOD that is over. I won't rehash that.

Then there is the whole mess with my sister being a jerk.

There is NO WAY 2010 can be that stressful. Yes, we will be adding a baby to the mix but I know the baby stuff. I even know the NICU stuff. The stressed of fixing up a room for him, decorating the house and loosing weight post baby are small compared to moving and hospitalizations. Unless something INSANE happens, 2010 is looking to be alot less stressful than 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

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):

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*

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.