Columns

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…

It’s no secret that rising costs and inflation continue to pose financial challenges around the world. Fortunately for families living with Angelman syndrome (AS), the Angelman Syndrome Foundation (ASF) continues to affect lives through its Family Fund grant. Awards of up to $5,000 are possible. The second…

My daughter Juliana has been wiggling. Upon first glance, the wiggling is really cute. It’s something between a dance and a silly walk where she arches her back. When Juliana does her silly wiggle dance, we laugh, and she does it more to capture our attention. I hope it’s merely…

When you’re living with Angelman syndrome, a well-executed plan makes the difference between tears and smiles. As the parent of an Angel, I know I can’t plan every aspect of our lives. However, attending important events like my daughter’s middle school football game requires some thought and finesse to…

Hearing the words “lifelong care” is enough to shock, frighten, and cripple a new parent. I see those words often when I read about Angelman syndrome (AS). But lifelong care becomes more manageable with a higher level of independence, and that’s what I’m working to foster with…