Napping is a great tool to balance out the hyperactivity and the extra energy that Angels seem to have. Even a short nap, often referred to as a power nap or a catnap, can make all the difference in improving behavior. Upon first glance, taking naps may seem counterintuitive…
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Stress is something special needs parents know all too well. After all, we live it every day. However, that doesn’t mean it has to take control over us all the time. With April being Stress Awareness Month, it’s a good time for us to think about the stressors in our…
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…
Recent Posts
- Angelman syndrome has shaped how we celebrate our son’s birthday
- MVX-220 Angelman gene therapy trial enters first human testing
- Recognizing the importance of exercise for Angelman caregivers
- When the world forgets our children
- Dosing begins in broader trial of Angelman syndrome therapy
- The guessing game involved in caring for a nonverbal child
- MVX-220 for Angelman syndrome earns FDA fast track status
- Starting seizure medicine has us grappling with anxiety and doubt
- Genetic medicine could target Angelman’s root cause
- ‘Urgent need’ for treatment drives GTX-102 study enrollment