“What’s the big deal about Christmas pajamas?” I once thought. But now I’m a believer in their almost mystical lure. As the parent of a child with Angelman syndrome, I’ve found that self-care is important. My 12-year-old Angel, Juliana, keeps me busy. Finding moments to refuel is crucial…
A Glass Half Full – a Column by Sabrina L. Johnson
Now that I’ve figured out how to drama-proof the occasion, Christmas Day has become one of my favorite holidays to spend with my family. Easing stress during activities is getting easier as my 12-year-old Angel, Juliana, grows older. We’ve settled into a comfortable holiday routine that fits both her needs…
The holiday season is officially here. With the focus on gift-giving, I’m thinking of an ideal gift for Angelman families: participation in clinical trials or other studies. Unlike regular presents that may soon be forgotten, research participation is the gift of a lifetime. Clinical trials are the backbone of…
It’s easy to give up when plans don’t go as imagined. Quitting is a lot easier than pressing on during a challenging moment. Because I persevered through a little hiccup this past week, I got to have a once-in-a-lifetime experience with my 12-year-old Angel, Juliana. I heard an announcement on…
I’ve been so focused on my 12-year-old Angel’s communication skills that a really big milestone snuck up on me. This Thanksgiving, as I reflect on the things that I’m grateful for, Juliana’s ability to get into the car independently will be among them. A famous quote notes…
Pointing is a skill that is taken for granted. What’s the big deal about taking your finger and poking it in the direction of the subject at hand? Plenty, I’ve learned. One’s ability to point falls under the category of fine motor skills. There’s more to it than meets…
I’ve had a big lightbulb moment about my 12-year-old Angel’s communication device. Juliana had a breakthrough last week when she used a sight word to request a visit to Chick-fil-A. The scenario confirmed what I’d been thinking for a while: It’s time to level up Juliana’s vocabulary, which means…
I love it when my 12-year-old Angel expands her world through communication. That happened last week, when Juliana used one of her sight words to ask to go somewhere she loves. I initially ignored her request because I thought she was randomly pointing to her new picture cards. As…
Traveling with my 12-year-old Angel, Juliana, can be challenging, but it’s not a task that I shy away from. The holidays will be here before we know it, and that means time with family and friends away from home. When traveling, our normal staycation routines still help things go smoothly.
There’s nothing easy about waiting. Before I became a parent, I wasn’t the most patient person. But a diagnosis of Angelman syndrome (AS) in our family changed that. Since we began living with Angelman syndrome, I’ve gotten better at waiting. Such was the case last week as I…
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