Saturday, May 14, 2011

CdLS Awarness 2011

Vinny and I have been busy this week spreading awareness about Cornelia de Lange Syndrome!

Our first stop was at the State Capitol to receive the Proclamation for "Cornelia de Lange Syndrome Awareness Day" on May 14th.

This was pretty amazing as we got to meet and shake hads with the Governor Dave Heineman. 

During the process I had asked this woman we were sitting next to if she could take some pictures when we were receiving the Proclamation.  I ended up spending about 20 minuets talking with her about Vinny and CdLS.






On Friday, Vinny and I went to Avery's school to speak to the entire third grade class about CdLS and Vinny...



I love this picture!  Franklin and Avery look so proud of Vinny...




I started of by reading the book, Melanie & Tommy have two pet rats and one syndrome.  This book was a great way to introduce CdLS...



I then discussed Vinny's G-tube and how he eats, his glasses, and hearing aides...



We talked about what makes Vinny different from other kids...

His small hands...


His physical and cognitive abilities...

Note in the above picture Vinny's glasses...he thought it was funny to keep pulling them down...when he did this over and over, the kids would laugh!


His small feet...


We then talked about how Vinny is similar to other kids..the way he likes to laugh, giggle, eat pudding, play with toys, spend time with his family, etc...

We talked about how if the kids saw another child out in the community that looked or acted a little different what they would do...

These are some of the answers that I got...

"smile"

"ask the child his name"

"ask them their favorite color"

"don't stare"

The kids then had an opportunity to ask me questions about Vinny...

"was Vinny born with a Mohawk?"

"will Vinny walk and talk?"

"does it hurt when he gets fed through his tube?"

"will he go to school?"

"will he go to college?"

"does Vinny sleep good?"

In addition to many more!

All of these questions led to great discussions!

Then the students asked if I would put Vinny on the floor so the could see how he moves around...


Of course Vinny loved being the center of attention and showed the kids how he rolls, scoots on his butt, ad spins in circles...



We then passed out bookmarks to all of the students and teachers.  Avery's teacher wanted to hold Vinners, which turned into Avery's class of 23 wanting to hold him....

How could I say no?

I made all of the kids use Purell and line up to hold him.

I wish I had a picture of this...

Each student would hold Vinny for a second then pass him onto the next student.

I was shocked at how great Vinners did...he never got over stimulated or irritated with being passed around.

I truly hope that Vinny had the opportunity to make a difference in a few of the students lives!




I take one of the boys in Avery's class home after school everyday...

When I picked them up that day, Colin said that Avery's "cool factor" went way up because of Vinny!

Overall, we had a fantastic week spreading awareness! 

Although May 14th is National CdLS Awareness Day, I think it is so important to educate and spread awareness about this syndrome on a daily basis!  It is incredible how many natural opportunities that come up throughout our day to do this, formal and informal!



Make sure to hug your CdLS loves one extra tight today!  We are all so blessed to have these special people in our lives whether they are our own child, brother/sister, grandchild, niece/nephew or friend!


3 comments:

  1. Oh Staci - that was so amazing! You and Vinny did GREAT! He has such wonderful brothers, and you have such FABULOUS kids!

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  2. Wow Stac! This is amazing! God choose you to be Vinny's mom and he couldn't have choose a better advocate for him. I am truly inspired by you!
    ~Em

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  3. It was an amazing visit! Thank you so much for sharing Vinny with us...now if you could just photo shop that double chin away...LOL

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