A Simple Software Change Gives My Angel a Better Voice

How using an AAC device for Angelman syndrome helps to empower this Angel

by Sabrina L. Johnson | January 12, 2023

As the parent of an Angel, change is often necessary. Recently, I decided to change the software on our 12-year-old Angel’s augmentative and alternative communication (AAC) device. The update is fresher than a new coat of paint, but I’ve already noticed the benefits.

Juliana is considered nonverbal, so we rely on various methods of communication. This includes simple sign language, pointing, knocking, Picture Exchange Communication System (PECS), picture cards, and her talker, which is an iPad that has been transformed with software into a communication device.

When we received Juliana’s iPad as a gift from the Angelman Syndrome Foundation, I narrowed down my software options and chose one that was easy to navigate and use. It was a good choice at the time. Over the past year, Juliana has improved her skills with the talker so much that I believed it was time to expand the options on her device.

Addressing Those Awkward AAC Moments

An easy switch

My thoughts were confirmed one day as I watched Juliana struggle to make a request by using her iPad and pictures. It took some time for me to figure out what she wanted, as the words she needed weren’t readily accessible. Her previous app focused on pictures, but her new app, Speak for Yourself, focuses on words.

Because I wanted time to focus and practice using the app, I waited until our Christmas break from school to change the software. The setup was fairly easy, and I managed everything in a few hours one afternoon. I modeled a few choices for Juliana and let her play around with the new app.

Juliana uses PECS a lot at school, but she responds well to real pictures. To get her interested in options she would recognize, I added in her favorite toy, Ladybug, and her favorite restaurant, Chick-fil-A.

Speaking for herself

As she moved around the house, I made certain to put her talker close to her. I wasn’t expecting mastery, but she did make a few requests with hand-over-hand navigation. Juliana lacks some fine motor skills, but by placing my hand over hers, I can guide her to the option she’s aiming for.

The next day, as I was folding laundry, I heard the words “Go Chick-fil-A, french fries, nuggets, please” fill the hallway. I was certain that Juliana’s 11-year-old sister, Jessa, was pushing buttons to get my attention and make a play for Chick-fil-A.

But when I went down the hallway, Juliana was sitting there with her talker giggling.

“Very funny, Jessa. We are not going to Chick-fil-A,” I said.

“What?” Jessa responded.

“Did you put this on Juliana’s talker?” I asked as I picked up the device.

“No, Juliana did,” she replied.

Then I saw Juliana push, “Chick-fil-A, Chick-fil-A, Chick-fil-A, please.”

Mystery solved. I was speechless over Juliana’s overnight mastery of requesting Chick-fil-A.

There are no words to express how proud I am of her. But without being boastful, I’m a little proud of myself, too. Making a simple software adjustment has given Juliana a better voice, and it didn’t even take 24 hours for her to find it.

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.

Print This Article

About the Author

Sabrina L. Johnson Sabrina L. Johnson wears hats as a wife, special needs mom, educator, freelance writer, and HR professional. Baking, reading, and gardening are her fun hats. When her daughter Juliana was diagnosed with Angelman syndrome in 2011, Sabrina searched for the right inspirational content. Not finding the positivity she craved, she began writing uplifting stories on her blog, Juliana’s Journal. Writing led to advocacy, and the e-book “Forward: First Steps on a Path to a Special Needs Life.” Sabrina writes to show that a life with challenges can still be viewed as a glass half full. She lives in Atlanta, Georgia with her husband, two daughters, and a very energetic Maltese.