For Our Family, Outings Are More Fun When There’s a Plan
A columnist shares the preparation that goes into attending events with her Angel
When you’re living with Angelman syndrome, a well-executed plan makes the difference between tears and smiles. As the parent of an Angel, I know I can’t plan every aspect of our lives. However, attending important events like my daughter’s middle school football game requires some thought and finesse to keep the occasion from becoming stressful.
Seasons change, and each brings different responsibilities and activities. My 12-year-old Angel, Juliana, and her sister, Jessa, started middle school this year. Jessa is on the cheerleading squad, and her participation means we attend the games. And football games mean stadium seating and lots of steps.
Steps are a deal breaker
Going to a football game might not seem like a big deal, except that Juliana is not a fan of stairs right now. My husband didn’t see a problem with Juliana attending the game and thought we should all attend the first one as a family. But I knew the steps and bleachers would be uncomfortable obstacles for Juliana, and I try not to show up at places without a plan.
Jessa and I went to the first game alone. During the action, I was like a spy doing surveillance on a target. I wanted to map out an alternative plan for getting Juliana into the stadium without triggering her fear and thus crying and screaming.
Additionally, I wanted things to go smoothly for Jessa. Often when we go places, Juliana will need extra attention and support. Sometimes, I want events to just be about Jessa. I wanted to sit in the stands and cheer her on without managing meltdowns.
So my husband and I did our divide-and-conquer routine. He kept asking me why we couldn’t all go together, but I stood my ground, and, eventually, he got it. I repeatedly explained that I needed to have a plan before Juliana went to a game.
That was a good decision.
Divide, conquer, repeat
Last week, we all attended the football game and watched Jessa cheer. Juliana had her iPad, Ladybug doll, and a beach ball to keep her occupied. When Jessa took her place on the field, we were camped out in lawn chairs at the top of the stadium in the wheelchair-accessible section. Juliana never went near the bleachers.
Sitting at a game for two hours is quite a stretch of time. Angels can become irritable or hyperactive when forced to sit for so long, so there was no way I was going to attempt such a feat. We did the divide-and-conquer routine again. My husband and Juliana came to the game later, so Juliana only sat through two quarters. Our team won, and there were smiles all around as we left the stadium with no drama.
Oh so cheerful: Juliana, right, and her sister, Jessa, share a hug after a pleasant football outing. (Photo by Sabrina L. Johnson)
It was a beautiful fall day and a great outing for our family. Furthermore, it was proof positive that events in our world always unfold better with a plan.
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, and are intended to spark discussion about issues pertaining to Angelman syndrome.
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