Columns

Much of my time and effort as a parent is spent taking care of my 12-year-old Angel, Juliana. That’s the nature of being a special needs parent of a child with Angelman syndrome. But Juliana also has a 10-year-old sister, Jessa, and it’s quite a balancing act for me to…

As I drive around my neighborhood, there is no shortage of CBD shops within a 10-mile radius. They’re so prevalent that I thought it was time to seriously consider introducing cannabidiol to my 12-year-old Angel, Juliana. I joked with my husband that I was going to get some CBD lotion…

There is a bit of March Madness going on in my home right now. And I’m not talking about the kind that revolves around basketball. Our March Madness involves the chaos of home improvements. Some people thrive in chaos, but I don’t, and our 12-year-old Angel, Juliana, usually doesn’t, either.

My life has changed a lot since I became a special-needs parent. Instead of goals that are Specific, Measurable, Attainable, Relevant, and Time-based (SMART), I now lean toward loose plans for accomplishing new intentions for the year. Raising a child with Angelman syndrome comes with challenges; my 12-year-old Angel,…

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…

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…

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…

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…

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…

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…