Columns

Pushing Past Stressful Angelman Behaviors

Singer Kelly Clarkson’s song “Stronger (What Doesn’t Kill You)” came to mind as I watched my 12-year-old Angel, Juliana, blow yet another raspberry into the air. I shook my head and ignored the gesture. Raspberries are tart with a little sweetness. That’s a good way to describe our current season…

Repetition That Leads to Results Instead of Insanity

Practice makes progress. That is why we use repetition so much with my 12-year-old Angel, Juliana. It certainly plays a big part in practicing emerging skills like dressing, toileting, and even cooking. But sometimes I forget that repetition is just as important for educational goals. Juliana’s former teacher reminded…

Birthdays Are a Great Reminder of What My Angel Can Do

Comparing our kids to other families can make it difficult to see the wonderful things happening in our own lives. To avoid falling into this comparison trap with my 12-year-old Angel, Juliana, I focus instead on the awesome things she can do. Birthday celebrations are the perfect time to reflect…

Treating Every Day Like Angelman Awareness Day

International Angelman Day on Feb. 15 is a time to tell the world about Angelman syndrome. But for me, raising awareness is an everyday event. My reasons to support AS awareness are simple: It leads to better and more supportive care for those with AS, more research and…

The Picture-perfect Snow Day for My Angel

Over the years, I’ve learned many lessons from raising a child with Angelman syndrome. However, I never thought there would be a lesson from a snow day. Although snow is a magical thing for many people, that is not the case for my 11-year-old Angel, Juliana. The big takeaway from…

The Real Meaning of Self-care for Special Needs Parents

Self-care for special needs parents is not the same as it is for other parents. I’m over reading articles that advise spa weekends, groups, and impromptu getaways as productive self-care. Like many things for special needs families, modifications are also needed for self-care, and please allow me to enjoy it…

The Devil on My Angel’s Shoulder

Although they present a happy demeanor, Angels can have bad days. Or bad weeks, which is what happens when my 11-year-old Angel, Juliana, is sick. Her sweet disposition is there somewhat, accompanied by a mean little minion that seems to be sitting on her shoulder urging her to dish out…