Connecting with a Community: International CHARGE Syndrome Conference 2019

Authors: Callie Sutcliffe, Parent, Dallas-Fort Worth Area

Keywords: CHARGE syndrome, National CHARGE Conference, parents, family, community, connections, sensory integration, family leadership, advocacy

Community Connections

This past summer was our family’s first time to experience the International CHARGE Syndrome Conference. We were excited this year because it was held in our home city of Dallas, Texas. We were also excited because we had always wanted to meet the CHARGE community in person. Hannah is our six-year-old daughter with CHARGE syndrome. We’ve spent the past six years forging special bonds and friendships with others in the CHARGE community all over the nation, and even the globe. However, until now, it had all been online.

Seeing so many faces for the first time in person was an amazing experience. It filled us with hope and empowerment as we mingled and connected with others from all over. We were also thrilled to make many new friends and build deeper connections. Whether it was a guy’s night/girl’s night out, the swim party, or just hanging out between sessions and mealtimes, the bonds of the CHARGE community became stronger and more evident.

Perhaps the greatest aspect of our time at the CHARGE conference was all the fun our little Hannah had! Hannah is never one to be shy. She boogied and danced her heart out one night during the Texan classic hoe down! She pulled other friends into her circle and danced with as many people as she could. The camp was incredible. The kids got their faces painted, saw live animals, played games, participated in arts and crafts, and got to meet Disney princesses! What an amazing adventure for her!

Hannah had her face painted during one of the evening activities.

Resources and Speakers

The quality and quantity of resources available to families at the National Conference for CHARGE Syndrome were invaluable. Regardless of how long we’ve been a part of the CHARGE community and how much research we’ve encountered, we find ourselves always needing to learn so much more. This year, the conference provided our family with strategies to help work through sensory issues at home and at school.

Hannah’s biggest need as a DeafBlind child is strategies for relating and responding to her world appropriately. Some sensory issues and behaviors we encounter with Hannah are hitting, throwing, the inability to sit still (ever!), and her aversion to heat and anything hot. Unfortunately, these things can occur at school too. The strategies, lessons, and materials presented at the conference gave us hope for the home and school environments.

When I returned home, I sat down with my husband to go over everything we learned and made notes about what we wanted to present at Hannah’s ARD meeting when school was back in session. We felt more equipped to handle IEP goals and create a plan with her educational team that would benefit Hannah. Of course, nothing is perfect. We still have to remind her educators when issues arise. No matter what, we are always Hannah’s advocates first, but having a wealth of resources and research to back up your claims goes a very long way in advocating for your child, on the front lines at home and at school.

Family Time

In the midst of all the excitement and activity, we also made time for our own family to enjoy a mini-vacation at the five-star Hotel Anatole in Dallas. We managed to wake up early on Sunday morning and sneak away to the hotel’s pool, themed after a water park. We ate brunch at the hotel buffet and walked around enjoying some quality time together. Apparently, we were not the only ones! We saw many families making special time for each other around the hotel. It was quite beautiful!

Family time was an essential aspect of the conference. Every evening, the board hosted a fun-filled night of entertainment. Families gathered together and bonded with one another, as well as with the community. Our family’s favorite night was the hoedown, Texan style! We danced, rode on an indoor train, and ate dinner together. By the end of the night, our hearts were as full as our stomachs, and we left with huge smiles on our faces. We definitely created memories that will stay with us forever.