By Jen Chao
What is CHARGE? It is an all-encompassing genetic syndrome that affects the entire body. CHARGE occurs in week 2 of pregnancy, when a chromosome flips to cause five defects, typically before the mother knows she’s pregnant. The diagnosis is identified by the presence of the same 5 defects, each letter standing for a specific defect. There are variances from one individual to another with CHARGE across a spectrum from A to Z. The focus must be on the individual and their specific needs, because it will appear differently and the required support and needs will vary. Pictorially speaking, CHARGE causes broken links within every system in the body.
Given this, think about the ability versus inability to see, hear and communicate and for the inability, the internal processing that needs to occur to overcome the inability. If there’s a broken link in vision and/or hearing (usually both), alternative methods must be used to bridge these gaps. Along with this, the methods of support to assist and bridge the gap are not 100% as there isn’t an exact replacement for either. Focus on the child and give them processing time (wait in silence) for the child to connect the dots internally before asking for another response. The processing time is critical! Additionally, an interpreter or intervener is essential in this process, by bringing the world to them – access to the world around them! The syndrome is so encompassing forcing the child to focus most of their energy each day to meeting the demands of what their internal body requires. There isn’t much bandwidth to search out the world around them through their significant disabilities.
How do you define behavior? Well, in CHARGE kiddos many reference “behavior” when the child doesn’t respond and follow suit with the other kids in class. If you’re not being heard & understood and you can’t connect with those around you, you’re going to ‘up the ante’, so to speak, to be heard and understood! We all want and deserve to be heard and included. It is imperative we meet our CHARGE kids where they are and understand how they communicate. Consult the parents, they are the expert on their child. Leverage and collaborate and your job will because much easier. When this process takes place, there’s a beautiful canvas that comes to life as the child is able to express him/herself.
