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.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…
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…
Board games are meant to be fun, but they have not been a source of lighthearted entertainment for our family in the past. My daughter’s poor fine motor skills have hindered her manipulation of the pieces and caused her short attention span to kick in. She…
After writing this column for a year, quoting Forrest Gump sums up my state of mind: “And that’s all I have to say about that.” I’ve come to a point where I don’t have much to share. Words do flow better…
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…
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…
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…
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…
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.
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.
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