Tuesday, August 10, 2010

NODCC Conference Thoughts

This year the NODCC held their annual Conference
in Santa Clara, California at the Marriott Hotel
on July 31, 2010 to August 1, 2010.

If you haven't been to a Conference before, it's
always fun and exciting to hear all about the
Conference from other people who attended so that
you can get a better idea for what goes on.

And for those of you who have a baby or toddler with
Agenesis of the Corpus Callosum who have not been
to a Conference who have some fear or apprehension
about what to expect at a first-time Conference I
think you will enjoy getting a glimpse of the Conference
through the eyes of Jessi, the Mom of one-year-old
Samuel, who graciously gave permission for me to share
her viewpoint of the Conference here for you to read.
♥ thank you very much, Jessi ♥

Samuel's Mom wrote:

"We just arrived home from our trip to California,
and what a trip it was! We really had so many
amazing experiences, starting with our time at the
NODCC Conference (National Organization for Disorders
of the Corpus Callosum).

I am not sure what I was expecting going into the
conference, but it was certainly better than whatever
my expectations were, and it was just what I needed.
There were families from all over the world (we met a
nice woman from Iceland and a couple from Australia).
There were children of all ages that had a disorder
of the corpus callosum. Some had complete agenesis
like Samuel, meaning no corpus callosum formed, and
others had partial agenesis or hypoplasia. There were
lectures that focused on educational strategies,
speech and language development, sharing the diagnosis
with your child, social development, current research,
and much more! I really enjoyed discussion groups for
parents, as I came away feeling understood, hopeful,
and more prepared for issues that may come down the
road. Getting to know other families was a big highlight
for me. Talking to other parents with the same issues
and concerns, and also getting suggestions was so
helpful. I really believe we made lasting friendships,
which will be so wonderful for Samuel as he grows and
for us as well.

Coming to this conference made me more aware of how I
had been thinking about Samuel... desperately hoping
that he would reach every milestone "on time" and
basically still be "normal" despite his diagnosis.
Meeting so many people with special needs kids and
their openness and positive attitude, made me realize
that I do Samuel a disservice by comparing to the
"normal". The truth is, his brain is different! I can
say that now without feeling sad or overwhelmed. I need
to be honest with myself and others about his ACC,
because Samuel has his very own timeline for development,
and he has special needs to help him achieve his goals.
He may very well go on to do "normal" things in his life,
but if he does, it won't be without a lot of work and
persistence on his part, and that should never go

I was told over and over at the conference to never
put limitations on kids with ACC. Push them to succeed!
They can do much more than we think possible. It may
take them longer, but they will get there. At the same
time, understand that there will be things that may be
more difficult for them. When they have worked to their
ability with one thing, move on to something else where
they will have success! I know that is very broad, but
it encouraged me that Samuel will have great victories
in his life (I knew that already, but it was cool to
hear real life success stories and meet adults living
with ACC!).

So my main take-away was really two things, a mix of
realism and hope... first to let go of "normal" by
accepting and acknowledging that Samuel's brain is
functioning differently. Secondly, although that is true,
his brain is amazing and is capable of learning and
growing and re-routing pathways to help him make
connections...so there is truly nothing impossible for
Samuel! Wahoo. :)

I just want to recount a favorite memory of mine from
the weekend. It was Saturday evening and after dinner
there was a dance with a DJ. As soon as the music started,
kids starting pouring onto the dance floor. There were
little ones, some even using walkers or wheelchairs, and
there were teenagers and young adults. Everyone was just
having a blast. I had a flood of happiness watching these
children have the time of their life. I could just imagine
Samuel one day dancing with his conference buddies years
from now. I came into the conference fearing that it would
feel like doom and gloom, and instead I came away so
touched to see other children just having a great time
being kids. I will cherish that memory for always.

I don't have many pictures to show for the conference,
as we were too busy! But here are a few...

Samuel getting really close to standing on his own
(which he later did for 3 whole seconds!)

Samuel's first taste of Ghirardelli ice cream...
don't worry, it was only a taste! :)"

And if you're wondering, like I was, if Samuel
liked his ice cream...here's the video answer.

See more of Jessi's pictures from the
Conference and also some family pictures in
San Francisco after the Conference.

"I came into the conference fearing that it would
feel like doom and gloom, and instead I came away
so touched to see other children just having a great
time being kids."
reprinted with permission The Von Banks

Did you attend the Conference?

National Organization for Disorders of the Corpus Callosum

2010 Conference Schedule
Note: Conference Schedule is found on pages 22-25 at link above. Page may take a few minutes to load.

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