I’ve discovered a better way to deal with Angelman outbursts

I used to think that my 13-year-old Angel, Juliana, screamed a lot because she lacked understanding. There might be some truth to that, but something else is at play. Many of her outbursts are good old-fashioned tantrums that she’s performing to get her way. But I’ve started to call her bluff and stand firm when she uses tears to gain control.

Although I don’t have medical proof, I’m convinced that, because of Angelman syndrome, Juliana understands more than she can express or communicate. With that in mind, I can give Juliana simple instructions, and she knows what to do — if she’s in the mood to do it.

Last weekend was a good example of Juliana not wanting to do what I asked. She woke up grumpy, with tears flowing from every direction. Speaking to her brought about more waterworks. The scene was way over the top.

Through the years, dealing with Juliana’s tantrums has been a work in progress. Irritability and outbursts can be a part of an Angel’s behavior. With all of the medical difficulties that come with Angelman syndrome, sometimes it’s the outbursts that wear me out most. I cope better on some days than others. But if Juliana catches me when I’m tired or trying to juggle too much, the situation becomes quite stressful. But last Saturday wasn’t one of those days.

After sleeping in without any family commitments, I felt more rested. But when Juliana got up, she just couldn’t be consoled. When I went to get her for breakfast, she screamed at every request I made of her. I promptly told her, “Oh, no, we’re not doing this. When Juliana stops screaming, she can have breakfast.” This comment made her scream even more. So I gently turned her around and said, “You will not eat breakfast while you’re screaming, Juliana. Do you want to go in your room or have breakfast?”

Juliana persisted with more screaming.

“OK, room it is,” I announced and marched her down the hallway.

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The waiting game

We entered her bedroom, and I sat her on the edge of her safety bed. I didn’t close the door because I wanted her to have the option to get up on her own. I said, “When you’re ready, come eat.” And with that, I turned and left the room.

I went down the hall to my bedroom and waited for Juliana to come. She didn’t follow me, but the crying ended almost immediately.

Next, I heard her exit the room, and I resisted the temptation to poke my head out to see what she was doing. I waited and waited. My husband and our other daughter passed by. “Please don’t say anything to Juliana,” I whispered. “She’s trying to make up her mind to come to breakfast.” And with that, they both swooped right past her and went about their way.

I continued to wait. Finally, I poked my head out of the bedroom door and saw Juliana was all smiles and giggles sitting in the hall. “Jules, you’d better come get breakfast,” I said in a soft, cheerful voice. And with that, she giggled and made her way toward me.

No more tears

Years ago, this scenario would’ve gone quite differently. I would’ve become frustrated with all the screaming. There would’ve been a few tears of my own. But that morning, I was calm.

I also know now that Juliana understands what I’m asking of her. Sometimes she simply doesn’t want to comply. She uses her tears for control. Her teacher has witnessed the same behavior, and we’ve shared conversations about Juliana crying for sympathy or manipulation.

The best strategy to manage the situation is to shut down the episode as soon as it starts. It might take a little time, but Juliana will eventually realize that her tears aren’t nearly as powerful as they used to be.

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.