A strange sound may mean my Angel’s communication is improving

A new habit has emerged, and while annoying, it might be a breakthrough

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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For the last few months, an odd sound has been emerging from my daughter’s room. My 13-year-old Angel, Juliana, is stuck making an “ugh” sound. The sound is annoying, and it’s left me baffled about whether we’re facing regression or progression with her communication.

It’s hard to tell which it is, but because I lean toward the positive, I believe we’re experiencing a breakthrough, even if it’s aggravating. Juliana is nonverbal, so she uses an iPad as her augmentative and alternative communication (AAC) device. Her talker is her voice. Our journey with AAC won’t be ending anytime soon, so the goal is to help Juliana become more proficient as the years roll by.

When she’s awake, Juliana uses her talker or points at things to indicate what she wants. But what happens when her talker isn’t nearby — like when she wakes up first thing in the morning? She needs to get our attention with what she has available.

When she was a toddler, Juliana would wake up crying or by letting out a scream. As she got older, we welcomed her knocking on things as a calling card to say, “Hey, I’m awake.” Juliana loves knocking, so I’ve used it to encourage sound and play. Even her speech teacher took advantage of it and introduced Juliana to knock-knock jokes.

Juliana still loves knocking, but sometime during the summer, I noticed that the good morning knocks had stopped.

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The knocks have since been replaced with a very loud “ugh.” “Ugh, ugh, ugh.” It starts at a low volume and builds if she doesn’t get a response. Can you imagine being awakened from a deep sleep like this? It’s jolting. In some ways, it’s worse than when she would wake up screaming.

I’ve tried to redirect her. Because she likes knocking so much, we practiced knocking on her bed. When she’d knock, I’d magically appear right away. “Knock and Mommy will come,” I said. I’m sure we didn’t practice it enough, because the next morning, it was “ugh, ugh, ugh” again.

Although the sound is quite irritating, I’ve found it to be useful for songs and imitations. If a song comes on that has a similar sound to her “ugh” mantra, Juliana will happily chime in. If I want to distract her during a meltdown, I’ll use “ugh, ugh, ugh” to shift her attention elsewhere. She’ll start to mimic me and forget what she was upset about.

I did this last week in church and soon discovered that a quiet church service is the wrong place for this tactic. Juliana loves the sound and, of course, saying it as loud as possible seems to be her goal.

I’m not stressing too much about this new fascination of hers. Juliana can’t call out, “I’m up, come get me!” But I do feel that “ugh” sounds similar to “up.” While that might be a stretch, I believe Juliana has upped the ante with her communication skills. She’s using a sound she can make to get close to a word that she can’t speak. It’s another example that she knows more than I can prove she knows.

I might not love it, but if I’m right, “ugh” is pure genius.

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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