Thursday, August 11, 2016

2016 NDSC Convention

The 2016 NDSC convention was held last month in Orlando, Florida.  We were once again fortunate to be able to go as a family and take advantage of the many learning opportunities offered to us. Every time I go to a convention, I learn something or meet someone who completely changes how I think about  Down syndrome and the possibilities for Ben's future.

This year was no different.

For me the conference is a working vacation, I was again able to share Signing Time with the families at the convention.  The most rewarding part about being an exhibitor is when families of older kids come and tell me how important Signing Time was for their child growing up, and them thanking me for coming and being a resource for young families.  I was also able to share some tips and trick about learning and teaching ASL to children with Down syndrome at an hour and a half session called Jumpstarting Language and Learing using Sign Language with my friend Cyndi Johnson from Indiana.  This year I also provided some entertainment at Kids Camp.  It turns out, this is way different from doing a class, because at classes, parents are there to help wrangle kids in a typical 's class.  In the 3-4 year old room I had them all stand up to sing along with a song and they all ran off and took my speaker and ipad that I was using to play songs.  It was certainly a learning experience for me!

Our booth was next to Gabe's Glass Creations.  Gabe is a self advocate from Santa Fe, New Mexico and does beautiful work with glass.  Gabe took a shine to Noah and they quickly became friends. Making connections with other families is one of the best parts of the convention.

Something else that was new for me was taking along some of the buttons that Ben and I made before the convention.  It was great that Ben showed an interest in making buttons, but it does take much longer at this point to have him involved in the process. All the time we invest now might just be of a benefit later if Ben decides to go into the button business. You may be hearing more about Benjamin's Buttons in the not so distant future.  For now, we sold a lot of buttons and all proceeds will be donated to Down Syndrome Advocates in Action Nebraska, so it was a great fundraiser.


One of the highlights of the convention was the cast of the A&E show Born this Way.  Megan and Sean's had booths just down the aisle from me and it was so fun to see the cast reunion happening live in the Exhibit hall on the first night when everyone arrived.  I even got Steven and Megan to take a photo with Hopkins for our #whereishopkins campaign this summer.


Randy did not get to go to as many sessions this year since he had to help me work in the Signing Time booth while I was entertaining at Kids Camp, but he really enjoyed the sessions he attended.  He chose sessions on technology and came out of both sessions he attended very energized.  We are excited that this year all participants at the conference will get recordings of the different sessions, so I am excited to listen to many of the presentations I missed.


We also got to spend a couple days before and after the convention at Universal Studios.  I was absolutely amazed at how well Ben did on the rides.  But it was a lot of walking.  Just walking up to the gate the first day made us realize that we would need to get him a stroller.  He just did not have the stamina to go the long distances.  I can tell already that he is going to be a roller coaster junkie, just like his Dad and big Brothers.  He went on everything he was tall enough to go on, and even stood on his tip toes to get into one of the Harry Potter rides.  I felt him shaking as Voldemort pointed his wand at us and shouted a curse, but as soon as we were done he would say, "Let's go again".












The special needs pass did come in very handy and made the park much easier to deal with. If a ride had a 60 minute wait, we still had to wait that amount of time, but we got to spend half of that time out of line.  Once we figured out the system, we would sign up for a return time, then go use the restroom and get a drink.  When we came back they would let us in the express line and the wait was much shorter.  If you have a loved one with special needs, it is definitely worth it to get the disability pass.

We were a bit worried about how we would feed Ben and completely avoid gluten, but we were excited to find many gluten free options on quite a few menus.   One thing that really helped was that we traded our Branson time share for a condo just 5 minutes from the convention, and it had a full kitchen.  We were able to eat a safe breakfast every morning, which gave us a good start to the day. The condo really was beautiful and had a couple pools, a basketball court and a put put golf course, so there was plenty to keep us busy.  Having a child with Celiac Disease certainly makes us appreciate the Time Share so much more.

It was an awesome conference/vacation and we look forward to Sacramento next summer.