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.
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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…
There’s something about music that my 12-year-old Angel, Juliana, just can’t resist. I’ve used this connection with sound as a means to sneak in some verbal and motor skill practice that is really music therapy in disguise. I call our quick interactive sessions “Dance Party.” When Juliana was smaller,…
It’s that time of year again. Yes, fall is right around the corner. It’s also time for an individualized education program (IEP) review meeting for my 12-year-old Angel, Juliana. IEP review meetings lay the groundwork for Juliana’s academic progress. I’ve read my share of horror stories about IEP reviews,…
I am a planner by nature. And in some small way, I envy people who are not. As we raise our 12-year-old Angel, Juliana, I have concluded that shooting from the hip and last-minute plans won’t be a part of our lives on a regular basis. A lot of unexpected…
Exercise can be a great way to combat some of the physical difficulties brought on by Angelman syndrome (AS). Getting my 12-year-old Angel, Juliana, to move is a fun and healthy endeavor. While a variety of exercises could keep Angels active, we’ve chosen soccer to get Juliana moving and…
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