A Day in the Life of an Angel

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by Mary Kay |

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First, she got her socks and shoes. Then her hat, Talker, and my pocketbook. When she handed her father the car keys, we knew she meant business.

Maybe she’s stir crazy, or maybe she had something specific in mind to shop for, like ice cream? It could very well be a combination of both.

When Dad didn’t budge, Jess tapped on her Talker, “Guess what, I leave market maybe.” It doesn’t matter that this is not grammatically correct, I can model that. What’s important is that her intentions were clear.

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If this were the first year using an augmentative and alternative communication (AAC) device, we would have immediately responded to this request. If you want them to communicate beyond gestures, then they have to see the power of their words.

Now, eight years later, we can compromise. I told Jess that it was too late, and that we would go to the store tomorrow. Because I am true to my word, she was satisfied with this reply.

Jess, 29, is happy that the mask mandate has been lifted. We had talked about how Friday was to be the last day for our state. I’m wondering if this was her motivation to go shopping? Just because she is nonverbal does not mean that she doesn’t listen to every word said.

Shopping \ Angelman Syndrome News \ Columnist Mary Kay's daughter, Jessie, dressed in a beige and pink summer hat, smiles while inspecting an avocado at a supermarket.

Jessie loves to shop. (Courtesy Mary Kay)

Due to our local market’s strict mask policies, Jess has not been in the store for over a year. During the cold months, she would wait in the car with our dog, Roxy. I made sure she knew that because she wouldn’t wear a mask that she was not allowed in and not because I didn’t want her.

Today, Jess was free as a bird to push the cart and shop without any constraints. Jessie has a smile on her face most of the time, but this morning she was beaming from ear to ear.

There’s something comforting about browsing. She likes making her own selections. My job is to see that she makes wise choices. It pleases her to greet the staff. When they call her by name, she stops, smiles, and waves. I don’t know if they realize how much that means to her. To be seen and greeted, and to feel like she belongs. No one likes feeling invisible.

Jessie is not a homebody. She likes to explore and stay on the go. While we did make a point of getting out every week, I was concerned that her social skills would regress. For years, Jess had a bad habit of pulling me everywhere we went. It didn’t matter that she didn’t know where we were going. She wanted to get there in a hurry. All of this pulling made my Angel hard on my body, and I needed a chiropractor.

shopping \ Angelman Syndrome News \ Columnist Mary Kay's daughter, Jessie, grabs a package of blue unicorn cupcakes at the grocery store

Jess admires the unicorn cupcakes, but puts them back. (Courtesy Mary Kay)

To my surprise, Jess didn’t make a beeline for the ice cream freezer. Instead, she pushed the cart to produce. She wanted an avocado and some strawberries. The mini unicorn cupcakes caught her eye, too. Colorful packaging of sweet, fluffy goodness. Unfortunately for her, cupcakes are not part of our modified ketogenic diet. Jess put them back without complaint. Now that she has been without carbs and sugar, she doesn’t crave them. She also appears to be having fewer absence seizures.

We are looking forward to being out and about this summer. Thank goodness, there’s nothing holding us back now.

To read more about our journey, visit my blog. We wouldn’t even have a story if Jessie hadn’t found her AAC voice. Also, check Angelman Syndrome News each month for future columns.


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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