Since our 12-year-old Angel, Juliana, was diagnosed with Angelman syndrome (AS), the paper in our house seems to have tripled. There is so much documentation involved in raising a child with special needs. These documents range from evaluations to individualized education programs (IEPs) to progress reports. To keep it…
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I never planned to keep anything from my 12-year-old Angel’s hospital stay in 2011. But for some odd reason, two tiny, cute robes she wore during the four-day admission survived the transition home. Juliana now wears one as a makeshift apron when she’s eating. Her 10-year-old sister, Jessa, uses the…
I’m a big believer in sharing wins and not just challenges. Unfortunately, challenges, conflict, or a shocking headline is what draws attention. In full disclosure, there is no shocking tale here. However, there is a simple story about making the best of things when a curveball comes our way.
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…
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…
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- After hesitation, we finally took steps to address our son’s disrupted sleep
- International Angelman Day: Why Feb. 15 matters for families
- Traveling with a child with Angelman syndrome is easier in the early years
- 6 months of keto diet shows promising trends for Angelman children
- 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