Happier Holidays Happen When We Don’t Jump Through Hoops

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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The holiday season is here. For many people, there might be a mountain of little details to plan that perfect holiday. However, it’s simplicity that keeps me festive while managing my 11-year-old Angel’s unpredictable behavior.

As the years roll by, I am learning valuable lessons as a caregiver. These lessons help me manage each season a little bit better. By seasons, I mean both the seasons of our lives and the seasons that contain holidays and special occasions. Some people mark their calendars by these events. I love the holidays, too, however, I’ve learned that overdoing the celebrations can trigger Juliana’s anxiety.

Her behavior affects our entire family, so we have a better holiday when we keep her anxiety in check. Angels are prone to anxiety, and they may often exhibit clinginess, restlessness, and crying. This happened last week during our Thanksgiving celebration.

Sweet and Simple

Because of our dietary restrictions, our family eats at home and then we visit with the rest of the family.

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This is a change that I made years ago and it has really made our Thanksgiving more enjoyable. Cooking a special meal and then taking it over to someone else’s house to eat might work for others. I did this one year, but it was so stressful. When I can avoid added stress, I do.

Juliana did well during our visit to my brother-in-law’s house this year. But there were a few moments of crying and unhappiness. She cries at the doorway because so many people are talking, laughing, and hugging all at once. There is a lot of chaos in this brief moment of greetings. It’s so brief that I don’t really try to fix it.

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Armed with a beach ball for comfort, Juliana poses with family members during their Thanksgiving celebration. (Photo by Sabrina L. Johnson)

For our next visit, however, I will bring two things that I am sure will help Juliana manage her feelings — her noise-canceling headphones and her talker. Because Angels are considered nonverbal, an augmentative and alternative communication (AAC) device can be used to help them communicate.

Juliana has been using a dedicated iPad as her talker since the summer. She’s still new at it, so I didn’t think we would need it, but that wasn’t a good choice. When we visit friends and family, I always bring Juliana’s favorite things that I know she will enjoy having with her. It would have been smart to bring her talker. She could have used it to communicate to me what was making her unhappy during the visit.

Not picture perfect

Putting things in perspective, I think we had a great start to the holiday season. We braved the cold weather to get our tree and Juliana was a picture of contentment. There is no predicting what will set her off — or bring joy.

No matter how I plan, I think the true key to enjoying the holiday is in managing my expectations. I am not looking for a perfect visit or event. The goal is always to show up and have a good time. From there, I just keep working to make things a little bit better for the next time around.

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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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