Mary Kay,  —

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.

Articles by Mary Kay

Fundraising and the Butterfly Effect

Fear, anger, and disbelief were just some of the emotions experienced upon realizing my daughter was not making her milestones. These stages came in no particular order. I kept asking myself, “Why her, why me, why us?” Of course, I’m not the first person, nor will…

Having Fun While Building Skills

When it rains, it pours. When it snows, we play hooky. Today we are taking advantage of (hopefully) the last snowstorm of the season. We’d decided the night before to have a girls’ day. Jess had a delayed start. In her perfect world, we sleep in, watch…

Fun Times with My Angel

When the cat’s away, the mice will play. With Jessie’s dad out of town all week, life was different. Our schedule didn’t revolve around him and we took full advantage. Half of my time was spent working on a messy project. During the other…

Whose Art Is It Anyway?

You know what is worse than a forgery? Art that comes home that was completed by an aide and not by my child. The first clue is that the work is too precise. The second clue is Jessie doesn’t care to…

Addressing Those Awkward AAC Moments

After the service, we were heading for the door when we bumped into an acquaintance of my husband. After introductions, the men talked while the wife tried to rein in her young teen son. Jessie wanted to engage and twice reached for her device, but the…

Looking Forward, Looking Back

Why is it that when you see a photo of a baby, you can’t imagine what they will look like when they are grown, yet when you meet someone as an adult, it’s not difficult to identify their photo when they were little? I guess we…

Choosing an AAC Device for Your Angel

If anyone ever asks me what is the best augmentative and alternative communication (AAC) device for their child, my response is, “the one they will use.” I know that doesn’t answer their question, but it is what we’ve learned to be true.

Angels Need to Keep Moving

The plan was for Dad to take her to the gym — something they could do together. I planned on recovering from a busy day while they were out. The next thing I knew, I was told to get my rear in gear and join them.