Please Know that I Understand

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by Mary Kay |

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(Courtesy of Mary Kay)

It’s rude to talk about someone behind their back. It’s even more impolite to talk about them in their presence. Unfortunately, this happens to the nonverbal all the time. Even worse, it’s assumed that because Jess isn’t talking, she doesn’t understand what’s being said or remember meeting them before. (Jess has a good memory.) She isn’t given the benefit of the doubt until she speaks through her AAC device. Where we may be “from Holland,” I think most people are from the “Show Me State,” Missouri.

When Jess was an infant, I held both sides of our conversation. This is how parents model language. However, by the time she was a toddler, it became apparent language was not emerging the way it should. Her silence made me feel awkward and I found myself talking for her. As my concerns grew, I even spoke about her challenges in front of her. Parents are supposed to brag about their children (within reason) and I did, but one should never talk about their worries.

We would take long drives to visit family. These trips were immersed in song, laughter, and language. Though one-sided, our conversations were not limited. I spoke about who we were going to see, what we were going to do, and anything else that was of interest. Jess may not have been talking, but she was listening. It’s evident by her choice of vocabulary — but that is another story. 

When Jess was older, we relocated to get her into a better school system. Temporarily, we stayed with my parents. The three of us shared a guest bedroom and the closet was crammed with our stuff. On a Friday night, we went on a date and my mother babysat. Mom put Jess to bed at 8 p.m. and we returned about two hours later.

We quietly made it up the stairs and into our bedroom expecting to find a sleeping child. Instead, we found Jess sitting in the middle of the floor, surrounded by the contents of the closet. It looked like rock stars had just exited. 

Jess had dusted herself with baby powder and was in the process of rubbing Banana Joe all over her feet. I was furious. “How could you!” I bellowed. Jess cried. Every time I yelled, she squealed in protest. Finally, I said, “I don’t know what your punishment is going to be, but I will tell you in the morning,” to which Jess responded with an exasperated whimper.

The following morning, I decreed, “You will not have dessert for the whole week, at home or at school, nada!”

My mother asked, “How do you know she understands how long a week is?”

My response, “How do we know she doesn’t?”

Every night, we ate dessert in front of her. Jess sat quietly and smiled. We ooh’d and ahh’d how yummy the ice cream with homemade chocolate sauce was. We even had M&Ms, her ultimate favorite, and even that didn’t elicit a response. She did not complain. She took it like a pro. However, on Friday, her week of punishment was over and Jess demanded dessert!

This happened long ago. We realized there are many concepts Jess understands but because she was nonverbal, it was difficult to be sure. She has since learned to cover her tracks better when being nosy.

When in a conversation and the other person doesn’t make eye contact, our culture considers this rude. With regards to Jess, most assume she’s simple-minded. What the neurotypical* world doesn’t realize is that when Jess isn’t looking at them, they are witnessing her in sensory overload.

She absorbs information differently. Where some people look at one thing at a time and commit it to memory, Jess has no filter and looks at everything collectively. For example, if a new ornament is placed on our Christmas tree, it is the first thing she notices when she enters the room.

Like books, I wish people didn’t judge others based on their cover. All I know is that Jess is a page-turner. Give her time and you will learn there is so much more than meets the eye. 

*I prefer using the word typical rather than normal, because really, who is normal?

To read more about our journey, visit my blog and check Angelman Syndrome News on Fridays for my upcoming columns.


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.


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