I was recently contacted by Amanda Weichers, the mother
of 3 1/2 year old Beau. Her son, Beau, has partial
Agenesis of the Corpus Callosum and Epilepsy.
Amanda is a volunteer for the National Organization
for Disorders of the Corpus Callosum (NODCC) and she agreed
to put together a USA regional family gathering. Amanda is
specifically in charge of the states of:
Iowa, Minnesota and Wisconsin.
The upcoming regional gathering will take place on:
Note: Water Park of America is located right in the hotel
Amanda says:
August will be here soon and I can't wait for our Midwest area
to get together in Minneapolis for our NODCC regional gathering.
I have organized this event in the hopes that families (affected
by a disorder of the corpus callosum) from Iowa, Minnesota,
Wisconsin and any other surrounding states might attend and find
comfort in meeting others that "understand".
I was certainly hoping that more might step forward and be able
to attend, but as of right now there are only 3 other families
besides ours that are coming. Some is always better than none,
so I am grateful for those that are able to attend.
It will be an awesome day with a great meal, great
opportunities to talk and then fun at the indoor water park.
We plan to follow it up the next day with a trip to the
Como Park Zoo in Minneapolis.
It will be a nice little vacation for our family from Iowa and
we'll be able to make some new friends as a result.
If anyone else is interested in attending, please contact me for
details. The more the merrier.
Amanda also states:
"Because some states around us don't have a volunteer,
I've been contacted by some in South Dakota and Nebraska
and I've told them they are more than welcome to join us."
Please contact Amanda Weichers for complete details.
Yesterday evening, the 4th of July, we were strolling through our neighborhood with our child, Matthew, who was riding his bike - 3-wheel trike. It was nearing dusk and excited kids were outside with their sparklers and other fireworks.
We could hear the beginning pops, booms and thunderous noises of fireworks during our walk.
At one point, while Matthew was riding his trike next to us, I noticed that he made his right hand into a fist (thumb sticking out) and raised his fist straight up by his face (holding it tightly and shaking his fist slightly). I haven't ever seen him do that before and thought it was unusual. But he stopped and went back to riding his bike.
Several more times, Matthew's raised shaking fist went up in the air by his face. I got a little concerned and wondered why.
Then all of a sudden it hit me that Matthew had made up a sign for fireworks!!!
His raised shaking fist corresponded with each time he would hear the noises of fireworks.
Matthew has Agenesis of the Corpus Callosum and he is non-verbal. With the exception of a handful of words, he communicates through a Dynavox V communication device and through some sign language, too.
BIG, beautiful fireworks were going off up in the sky (a few streets away from us) that caught Matthew's attention (and our's, too). They were spectacular! Matthew was enthralled!
Between the few big booms of exploding colorful sparkles against a darkened sky and the two groups of kids on our street (to our left and right), busily putting on their own show, we were right in the middle of a fireworks display that we weren't even expecting.
As we headed home, I went straight to the computer to look up the American Sign Language (ASL) sign for "fireworks" because I didn't know the real sign for it.
Although I loved that he created his own made-up sign.
I wanted to know the real sign and I want him to know it, too.
My search for how to sign the word "fireworks" led me to an awesome baby sign language website with free video demonstrations that I want to share with you.
