I am the caregiver and mother of a son that as diagnosed with Charge Syndrome shortly after his birth. Charge Sydrome is a complex genetic syndrome which occurs in 1 out every 10,000 births. This year’s National Charge conference was held August 2nd through August 5th, and fortunately my family and I were able to attend.

First off, it was great to be around parents that understood the challenges of raising a child with multiple disabilities. No one asked awkward questions or gave long stares during g-tube feedings or during sudden meltdowns, because it was all familiar. We were able to bond…to swap stories and give advice on how to help improve the situation.

The other great thing about the conference was the fact that the kids and their siblings could attend camp based on their age group. Due to the multiple medical and physical issues chargers deal with, they are often anti-social and prefer to play alone. As a parent I am concerned about my son being comfortable interacting with other children. I don’t want him to feel isolated or be teased for being different. Not to mention my daughter was able to bond with other kids her age who knew how she felt.

Last but not least, there were seminars ranging in topics related to symptoms of Charge Syndrome. Not everyone with this disorder has the same abnormalities, so it was great to be able to chose the ones that were relative. For instance, my son can be very hyperactive and exhibits aggressive behavior when he is seeking or has too much sensory input. There were speakers that specialized in that area, providing helpful information and tips on how to manage this behavior and why he behaves in this manner.

People with disabilities (and their parents) often feel isolated – like no one fully understands what it’s like to be in their position. It was a wonderful thing to be around others that could relate.

As always, thanks for taking the time to read my post.