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…
Columns
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.
Winter Colds and Snowstorms
Just one look and I knew my well-laid plans for the day were for naught. Jessie woke up congested and tapping her nose. Sure signs of an impending cold. Within moments, plan B was enacted. I called her program to let them know she’d be out…
An Angel’s Gift of Empathy
We are keenly aware of the challenges of Angelman syndrome: seizures, sleeplessness, and being nonverbal to name a few. However, the disorder has positive aspects, too. My favorite of my daughter’s traits are her sunny disposition and ready smile. I love that she…
Rainy days and Mondays always slow us down, and when it rains on a Monday, we want to stay home. That’s what we did this week. Jess had gotten up once during the night and was moving slowly. Upon seeing the rain and the wind…
When it was time to greet each other, Jess reached her hand out to everyone within arm’s reach. She didn’t look people in the eye, but coyly smiled while looking to the side. A few minutes later, the pastor shared why some congregants raise…
Sleepless in New Jersey
There has been a nightly pattern. Jessie puts herself to bed first, then I turn in, and then my husband follows an hour or so later. He falls into slumber as soon as his head hits the pillow, Jess has been asleep for hours,…
Beauty Inside, Beauty Outside
Mom and I did not enjoy shopping for clothes together. Not only did we have different styles but we also couldn’t agree about how they should fit. When I was a teen, after we settled on a pair of jeans, I’d take them to my next-door…
Every September, I anxiously waited for the Sears Wish Book to arrive in the mail. This gave me three months to pore over the pages to determine what I wanted for Christmas. Not only did this help my mom with ideas but it…
Recent Posts
- Parenting a child with Angelman syndrome requires constant vigilance
- Phase 3 trial begins testing potential Angelman syndrome treatment
- Our nonverbal son’s hospitalization taught us some important lessons
- Angelman clinical trial enrolls children to test new treatment
- Angelman syndrome seizures are unpredictable, but we carry on
- $32.5M to advance rugonersen into late-stage testing for Angelman
- GTX-102 data show continued developmental gains in Angelman
- What standardized assessments miss about my son with Angelman
- Surgery usually corrects misaligned eyes in kids with Angelman, study finds
- The joys and challenges of disability equipment for children with Angelman