Communicating With My Angel Is a Trial-and-Error Process

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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Parents of children with Angelman syndrome occasionally may face behavior that is challenging to control or understand. Our 12-year-old Angel, Juliana, can spiral out of control in a matter of minutes. This behavior might include anxiety in the form of irritability and crying. Sometimes, it takes extra effort to communicate with her and get to the root of the problem.

This is exactly what happened on her last day of school this year.

I got up extra early that morning to make sure there would be time to give her a dazzling hairstyle for the school’s fifth-grade award ceremony and parade through the school halls. I didn’t anticipate Juliana’s sour mood that morning. The first clue was the extra loud screaming as she came down the stairs.

Screaming seems to be Juliana’s go-to form of communication when she isn’t happy with something. She can climb stairs just fine. But lately, she isn’t so keen to come down as easily. Her screams seemed to grow louder with every step.

The second sign of trouble was her half-eaten breakfast.

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Something just isn’t right

More than anything, the screaming didn’t seem to have a source. My first thought was to keep her home, but I didn’t want her to miss the last day of school and her special day. In our family, when we can’t make a special event, we devise a plan to make it up. Unfortunately, there could be no do-overs for this day. My husband was antsy as their departure time for getting to school came and went.

I had him sit with Juliana while I packed up her school bag. The tears and screaming continued. When I finished packing up, I took Juliana into the living room and grabbed her talker.

Juliana has been successfully using her iPad — which serves as her augmentative and alternative communication (AAC) device — to communicate for almost a year. When I repeatedly asked her how she felt, she kept saying with her talker, “I feel good.”

Obviously, this was completely inaccurate. She also kept pointing to her neck and shoulders. My mind raced to the previous evening. I couldn’t remember an instance in which she could have hurt herself. I checked her shirt tag and her upper body but didn’t see anything wrong.

Like many Angels, Juliana uses different means to communicate. This might include gestures, sounds, and an AAC. However, on this particular morning, I needed her to calm down first so that she could clearly communicate.

Cool, calm, and communicating

Nothing made sense — especially because Juliana has been consistently acknowledging when she doesn’t feel well. I grabbed her other iPad and got her comfortable on the living room floor so that she could watch a show. I lay down next to her and started pressing her shoulders and back, and giving her strong hugs. Using this deep pressure technique is very effective for her.

Eventually, the tears came to a halt. When she calmed down, I grabbed her talker again. This time, she said her tummy hurt. Three cheers for a tummy ache! This was something I could work with.

I grabbed some medicine to soothe Juliana’s tummy. Her disposition was already changing and relief washed over me. I think she was relieved, too, when she was finally able to communicate what was wrong.

Her recovery happened just in time to get to school for the awards. As it turns out, she wouldn’t miss her big day after all.

angelman | Angelman Syndrome News | Juliana smiles at the camera while accepting an award from her school principal.

Despite a rocky start to the morning, Juliana proudly accepts an award from her principal on the last day of school. (Photo by Sabrina L. Johnson)

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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