More than what you see:
Communication is how we interact with the world. It is how we tell those around us what we like and don’t like, it is how we express our thoughts, wants, desires, and dislikes. It is how we tell people we are tired, and how we communicate to others how much we enjoy being around them. Communication is different from language, and many of us communicate with both words, gestures, and facial expressions on a daily basis.
Yet suddenly Joey could not only communicate with words, but he also could not gesture to express his wants and needs. Suddenly a dynamic boy was trapped inside a body with no way to interact with the world, and almost no way for the world to recognize the boy inside the body.
Often, when we meet people in wheelchairs, particularly those unable to speak, we make certain assumptions about their cognitive ability. For Joey, this is a terrifying possibility, as once we start making assumptions about a toddler’s cognitive ability, we start creating a self-fulfilling prophecy. We set up simple activities we think the toddler with low ability can handle, and then in turn the toddler never has the opportunity to grow beyond those simple activities. The more we think a child is not capable of doing something, the more we create a child that is not capable of achieving.
It would be easy for those around Joey to assume he is not capable, and in turn never ask Joey to identify a color, a letter, or ask what comes next in a song. Yet then Joey would never know that he could answer these questions.
One way that we know a capable boy is in there is that despite his limited motor abilities, Joey developed a way to communicate. To let you know what he likes, Joey first locks eyes with you and then laughs. If he doesn’t like something he avoids eye contact, drops his head, and cries. If he want something, he locks eyes with you, smiles, and then moves his head in the direction of what he wants. It’s remarkable how quickly Joey can communicate with a stranger using his system. Of course, it limits his ability to communicate to simply expressing pleasure, displeasure, or the desire for an item in the room.
Luckily, Joey began using an eye-gaze system with Words for Life in the fall of 2016, which has allowed him the possibility of expanding his communication.