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.
Time is something we don’t get back. However, I’m always looking for ideas to free up extra minutes in my day. As a caregiver to my 13-year-old Angel, Juliana, my goal is to offset those responsibilities by keeping other areas of my life simple. Surprisingly, something as odd as a…
Mayhem. It’s a word that sums up all the crazy that can occur, and it’s certainly a good way to describe my life as I raise my 13-year-old Angel, Juliana. But mayhem also reminds me of May, which is right around the corner. May is never very good to…
I am guilty of what professor and author Brené Brown calls “foreboding joy” — the feeling that something bad will take over the good that’s happening. Brown is known for her research on courage and bravery. Raising my 13-year-old Angel, Juliana, certainly requires both. My life is a work…
Self-care doesn’t always take priority when you’re parenting someone with a neurogenic disorder like Angelman syndrome. But I’m walking proof that it should be. As a caregiver to my 13-year-old daughter, Juliana, I’ve been writing about Angelman syndrome for over 10 years. My goal is to be intentional…
I’m facing a truth that I knew was coming: My 13-year-old Angel, Juliana, is bigger than me. Once hormones took over, the growth spurt wasn’t far behind. But when your child has a neurogenetic disorder like Angelman syndrome, which poses specific challenges, growth means more than a taller…
Anxiety is a normal characteristic of Angelman syndrome. Its triggers might include separation from a caregiver, noise, crowds, or a change in routine or environment. When things are going smoothly and my 13-year-old Angel, Juliana, is having good days, it’s easy to forget how easily these factors…
Organization has always come easy to me, and it plays a big part in improving my quality of life as a parent to a daughter with Angelman syndrome (AS). When the clocks sprang forward last weekend, it made me think about spring cleaning. I always do some things to…
My 13-year-old can do squats! Big deal, some may think — especially those who don’t know much about the constraints of a rare disease. An exercise that requires bending and balance is easy for the average kiddo. But for my daughter Juliana, who has Angelman syndrome, stooping without…
Get regular updates to your inbox.