To Redefine Angelman Syndrome, We Play the Game by Our Own Rules

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by Mary Kay |

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Dear Angelman syndrome,

We read your definition, and we didn’t like it.

Stating that a person with Angelman “can’t do this” and “can’t do that” wasn’t going to work for us. We opted for “I think we can” instead.

Our angel, Jess, had boundless energy and was relentless and unfocused. This combination meant that there was no rest for the weary. It seemed like she was going nowhere fast. However, learning to channel these traits in a positive direction made a huge difference.

Instead of playing by the rules, we made our own. There is yin and yang: We remove time constraints but push the limits. We build off success, no matter how small, and don’t allow the fear of failure to take root. In other words, we don’t play games the way they were intended, but find a way to make the game work for us.

The biggest problem I have with the Angelman diagnosis is that it implies the answer is no. “No” must be turned into a “maybe” before it can ever become a “yes.” I wish doctors would clarify that Angelman syndrome involves a spectrum of abilities.

We were told that Jess would never talk, but just because she is nonverbal doesn’t mean she lacks a voice. Jess has spoken words over the years, but not enough for anyone outside the family to understand. She uses an augmentative and alternative communication device. Being able to speak for herself is a game changer.

As her ability to express herself expanded, her attention span grew, and her frustration level decreased. Her ability to focus on a task grew as well.

It’s important to note that Jess’ emerging skills have developed over a long period of time. The progress is so slow that we aren’t always aware of the changes. It’s like going on a long car ride, and suddenly, you arrive!

Jess plays the game in style. (Photo by Mary Kay)

Over the Easter holiday, our family decided to play beer pong, minus the beer. I wanted to do an activity that everyone could participate in. When Jess was younger, she would either sit on the sideline watching or need hands-on support. For years, she would not release the ball when she threw. This time, to our delight, she scored a pong point on her first turn!

This is when a game is not just a game. The smallest thing can bring the greatest amount of joy.

I feel as though we are a living game of poker. No matter what hand we’re dealt, we have to play the cards we’re given. Only in the movies are people dealt a perfect hand, a royal flush. The thing about poker is that no hand is the same, and you have to think on the spot.

Just like poker, angels need to find ways to beat the odds. It’s not about winning or losing, it’s about how we play the game. Some may call it cheating. I prefer to think that we just play by different rules. This allows our daughter to find her personal best, which means we all win.

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