Columns

When you’re a caregiver to someone with a neurogenetic disorder like Angelman syndrome, you learn that progress can’t be rushed. It’s a belief I’ve come to embrace while raising my 13-year-old Angel, Juliana. Holding onto this ideal is important as I reflect on her progress with the ramp…

I’m a sucker for research and studies, especially those involving Angelman syndrome. Such is the case with a recent study highlighting that parents of children with Angelman syndrome are less productive economically. Angelman Syndrome News does a great job summarizing the findings from the study “Estimating the impact…

Caregiving comes in many different forms. For me, it shows up in the support for and care of my 13-year-old daughter, Juliana, who has Angelman syndrome. But I also have friends who are caring for aging parents or spouses. Care may include daily assistance like dressing and feeding or…

Having a pet in your family is a big responsibility. That’s why I delayed getting one until my daughters were older. Having a daughter with Angelman syndrome means that issues like sleep, acid reflux, and even ataxia consistently require my attention. It took time for me to…

Since my 13-year-old Angel, Juliana, was little, I’ve been hearing the word “guardianship” repeatedly. I recently got an official welcome to that legal process during Juliana’s final meeting of the year for her individualized education program (IEP). Guardianship is necessary for those with Angelman syndrome because Angels require…

I wasn’t surprised or outraged when I read the news article “‘They matter too’ Las Vegas mom upset over special needs son’s exclusion in yearbook,” by Joshua Peguero. Instead, I felt fueled and encouraged. It was a wake-up call to continue writing about Angelman syndrome (AS) and advocating…

Sixth grade is just about over for my 13-year-old Angel, Juliana. The year has gone well despite the tough decision we faced with school choice. When you’re transitioning to middle school in special education, your home school and your student’s abilities all come into play. I didn’t know what the…

As a mother to my 13-year-old Angel, Juliana, I found myself in uncharted territory last Sunday. For the first time in a long while, I didn’t feel too exhausted to celebrate Mother’s Day. Breakthrough is not the word that comes to mind. Perhaps I turned a corner? I’m not sure…

Routines aren’t just for babies and toddlers. They also create consistency that my 13-year-old Angel, Juliana, relies on. This is not surprising given the fact that changes in a routine or surroundings can trigger hyperactivity in those with Angelman syndrome. When I’m tempted to meddle with consistency,…

Brushing my 13-year-old Angel’s teeth is a chore that’s still a work in progress. The other morning when I took on the task, I gave myself a timeout. Strum, strum, strum. I rapidly tapped my fingers on the bathroom chair while waiting for Juliana to stop being distracted. And squirming.