A New Communication Tool for My Daughter With Angelman Syndrome: Knocking


Most people would agree that screaming is not the most effective way to communicate. Unfortunately, screaming has been the default for my 12-year-old Angel, Juliana, as long as I can remember. So imagine our surprise when she introduced a new form of communicating: knocking.

Angels are considered nonverbal. I’ve never liked this description, because it falsely leads people to believe that because Juliana isn’t saying regular words, she is unable to communicate.

Juliana communicates in different ways, including using some basic sign language. For the more complicated things, she uses her iPad as her augmentative and alternative communication device. We refer to it as her talker.

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Enough said

In addition to using her talker, she’s quite verbal. She’s not stringing together complete sentences, but she uses basic expressions like “buh, buh” for bubbles and “buh-bye” for goodbye. And let’s not forget the infectious laughter that Angels are known for.

Researchers don’t know why laughing and happy demeanors are a part of Angelman syndrome. But when you compare this trait with difficult maladies like reflux, anxiety, and seizures, it’s a great balance.

So with her very verbal abilities, Juliana uses screaming to let us know lots of things. Screaming is her first response when she is frustrated, upset, or merely waking up. We have been living with this behavior for some time, which is why it was so easy to notice when she started knocking on things to get our attention.

Juliana is not walking around the house knocking on the furniture and walls all day — that would be really quirky. However, we do get random knocks at times. When she knocks, I gleefully respond, “Who’s there?”

She may not understand the joke, but it gets a giggle out of her every time. This little game is fun, but what’s truly knocking our socks off is the rapping she is doing to announce that she’s awake.

‘Knock, knock, knockin’ on Juliana’s bed

The good-morning knocking started about this time last summer. Juliana is an early riser, so even during the summer mornings, we would hear loud screaming. “Juliana is awake,” my husband or I would mumble. The screaming didn’t really mean that anything was wrong; it was just her saying, “Hey, I’m up. Come see me!”

Imagine yourself in a half-asleep state and having a distressing scream enter your ears. It’s not fun. So when the morning screaming stopped, we noticed it immediately.

At first, we thought something was wrong. One morning, in a hazy state, I peeked at the bedside camera to see if Juliana was awake. Sure enough, she was. And then, there was a faint “tap, tap, tap” flowing from her room as she knocked on her bed.

It was Juliana all right. She was up and ready to face the day without screaming.

I’m not really sure what ushered in this change to her morning screamfest. Don’t get me wrong — it’s a welcome one. Now, I’m just hoping she’ll soon use her talker to say that she’s sad, frustrated, or whatever the unhappy emotion of the moment might be.

Like the evolution of the knocking, I believe it’s just a matter of time.


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 related to Angelman syndrome.

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