Labels Speak for My Angel When She Can’t Chime In

Because many Angels are considered nonverbal, it is important for parents to get creative to help them communicate. My 11-year-old daughter, Juliana, is beginning to use her talker to communicate, but it will take some time.

Through the years, I have relied on labels, notes, and even an “All About Me” card to make sure some of her selective needs are being addressed. Juliana also has monogrammed book bags for this purpose.

Juliana’s “All About Me” card helps new caregivers learn about AS and her likes and dislikes. (Photo by Sabrina L. Johnson)

I never realized how this was taking shape and the impact it was having. Years ago, my husband, Lamar, came home after picking up Juliana from camp. He told me that the counselors were talking and laughing about my labels.

“What?” I asked, appalled.

“No,” he said. “In a good way. They like how you organize it and make it easy for them.”

Well, that made me feel good about all of my crazy labeling. I felt good not because someone was taking notice of my diligent lunch organizing, but because the system worked.

Recommended Reading

July 18, 2021 News by Mary Chapman

FAST Unites Global Research Experts for First INSYNC-AS Meet

What’s that doing under there?

The idea came from an honest mistake during a previous camp experience. Juliana was attending one of her favorite camps. When I read her camp report, it stated that she had a good day.

However, I was not so happy when I unpacked her lunch bag. Half her lunch and snack remained. I reread the daily report to see if she refused her lunch or got sick. There wasn’t anything about it.

To say that I was angry is an understatement. First, I got her something to eat. Then, I took apart her lunch bag. I have purposely purchased a container system that stacks and holds the food in different compartments. The lunch and snacks were also labeled.

Confused, I tried to figure out what happened. Then, I realized that whoever helped Juliana with her lunch didn’t notice that there was a bottom row. They simply took off the top layer of food. Everything else remained in the bag.

Something good from a small mistake

I considered many scenarios: running out to get new lunch containers, sending a mean email to the camp, or putting a note inside the lunchbox. Putting a note inside the lunch seemed like the best course of action. So, that is exactly what I did.

Of course, I also followed up with the camp counselor, and she made sure that the confusion was resolved. I don’t really remember how long ago this incident happened.

But the same type of note is still in her lunchbox today. It’s not a fancy note, but a handwritten Post-it laminated with tape.

Post-it to the rescue

The note has evolved through the years, but the message is simple and straightforward. Juliana has been in the same classroom since kindergarten, yet the note remains. It’s there for the times that a sub comes in. She’ll have help in getting Juliana’s food right.

A tower of lunch supplies with Sabrina’s tape labels. The note that started the label craze is always in Juliana’s lunch. (Photo by Sabrina L. Johnson)

I know this is such a small thing when I have so many facets of Juliana’s care to manage. But that note gives me a sense of comfort. I don’t ever want Juliana to go hungry because someone doesn’t realize her hand sign for eating. They also may not understand her pointing gesture that could say, “Hey, there’s more food in there!”

She has a little note to help her. But that little note goes a long way.

***

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.