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.

Keeping Your Angel Busy

Captain’s Log, Stardate 04.14.2020: This is our 34th day of self-quarantine. To survive, we’ve had to adapt to new restrictions and find distractions to prevent ourselves from losing our marbles. *** Easter was quiet. Instead of having family and friends join us to celebrate,…

My Angel Is Becoming More Independent

For the longest time, my daughter’s motto was, “I may not know where I’m going, but I want to get there fast.” Jessie wore overalls as a kid, which gave me something to hold onto. But she started pulling me by the hand as she…

Angels Need to Learn Proper Manners, Too

If my daughter, Jessie, doesn’t like what she hears, she will walk away. When her boyfriend — more of a buddy than a romantic interest — gets frustrated, he raises his voice and curses like a sailor. Jessie is unimpressed by his outbursts and avoids him…

Angels Change Over Time

I was on sabbatical this summer and didn’t write for BioNews Services or my blog. Sometimes you don’t realize how burned out you are until you stop. But the longer I went without writing, the more anxious I became. When people asked if we…

Familiarity Is the Foundation for Acceptance

This past weekend was action-packed from front to back. There was Jessie’s last dance of the season, a wedding to which the whole family was invited (doesn’t always happen), and another wedding that Jessie was expected to attend (we were the transportation). Actually, we are friends of the…

Angelman on the Trail

Last week, on a clear, sunny day, we decided to go on a hike. My daughter Jessie complained every step of the way, and I loved every minute of it. Not really, but I’ve learned to accept her lack of enthusiasm over the years. It seems whenever I…

Angels Are Clever and Sneaky

Well, well, well, if Jess isn’t turning into a regular 007. Typically, when caught, she’s a deer in headlights, but not this time. While we were getting dressed for a Sweet 16 party, Jess was helping herself to treats tucked away…