When it was time to greet each other, Jess reached her hand out to everyone within arm’s reach. She didn’t look people in the eye, but coyly smiled while looking to the side. A few minutes later, the pastor shared why some congregants raise their hands in praise. Again, Jess surprised me and participated. I’ve always known she listens to every word that is said, but this was just another gentle reminder that she is engaged.
It’s taken years for her to come out of her shell. Social gatherings, school, and church typically were met with sensory overload. If the venue was too loud or there were too many people, it was too much for Jess to take in at once. Before she can settle into a new setting, she needs to case the room. Most people are able to focus and filter information into digestible pieces, but she prefers to collect data as if studying a photograph. As soon as she has memorized the items in the room and sized up the people, her anxiety reduces and she’s able to focus on who she is with.
However, Jessie learning to cope is only one piece of the puzzle. People tend to avoid others they don’t relate to or understand. Because of this, we have learned that we need to be the bridge. If Jess is going to be part of the community, then we have to teach others how to have a successful conversation with her. Of course, this takes time for them to wrap their brains around. Being unable to talk and using a computer for her voice just seems so foreign to most. Maybe this is just Mom talking, but once they see that she has a keen sense of humor or listen to her comments (on her Talker) during a conversation, they realize she isn’t as different as they initially thought.
My wish is for everyone who uses an AAC device to pay it forward. If each person showed three people, and those people told their friends, then our world would get bigger. As her world grows, her social skills improve, too, and that is all that I can ask for.
Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Angelman syndrome.