Raising an Angel - a column by Mary Kay

AAC Awareness Month, advocates, challenges
Mary is a blogger with a mission. She wants to make the world bigger for her nonverbal daughter, Jessie. She writes about their Angelman syndrome journey and how their life changed when they found her AAC voice.

A Day in the Life of an Angel

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…

When Angels Help

Alert the media! Not only did our angel get dressed independently this morning but she also put the lid back on the Play-Doh! For years, Jessie left a trail wherever she went, just like in the movies, except that her trails originated from the bedroom out. She runs down the…

What to Know During AAC Awareness Month This October

Because people rarely see an augmentative and alternative communication (AAC) device in action, they don’t recognize it. Most assume Jessie carries an iPad for entertainment. Though talking is amusing, to her it is no game. October is AAC Awareness Month.(Courtesy of Mary Kay) When…

I’m Thankful for Angel Advocates

When my daughter, Jessie, was 2, she saw a balloon while we were waiting in line at the market. I pulled it closer for her to see, then let it go. She smiled as it floated to the end of its string. After observing this, the shopper next to me…

Summer Challenges and Zoom Adventures

As of this writing, 140 days remain until 2021 — but who’s counting? Within two weeks, my husband had two ER visits, one resulting in a hospital stay. A tropical storm caused a power outage, and then our well stopped working. As soon as we were…

Negotiating With a Manipulator

It was 5:30 a.m. and Jess needed to use the bathroom. Instead of returning to her room, she exited stage right. The sun was rising and that was all the incentive she needed to begin her day. Every time I redirected her to bed, she pushed the covers…

This Is What Keeps an Angel Mom Up at Night

Three things keep me up at night: worrying that my daughter’s seizures will return, thunderstorms, and a waning gibbous moon. This past month, we hit the trifecta and experienced all of the above. I saw a seizure a few weeks ago. It…

This Year Has Gone to the Dogs

Since 2020 has gone to hell in a handbasket, it’s necessary to step away from the 24/7 news cycle. I don’t want to focus on the virus. Instead, I declare this the “Year of the Dog.” As they say, “You want a friend in Washington? Get a dog.”…