Columns

When advocating for a child with Angelman syndrome, it’s not always easy to let up on the reins and trust the professionals. But I’ve come to rely on the expertise of my 13-year-old Angel’s medical providers and her team at school. This trust enables me to make adjustments for…

While packing up my 13-year-old Angel, Juliana, the other day, I realized how fortunate we are to have a great start to her seventh-grade year in school. Juliana has been cooperative at school, and the fussing and crying that usually ensue in the mornings have lessened dramatically. I’m not…

My 13-year-old Angel, Juliana, had an incredible return to school last week. It’s not a newsworthy event, but it is something to celebrate. Returning to school is a stressful time of year for any family. From school supplies to adjustments and new routines, there’s a lot to juggle during…

My 13-year-old Angel, Juliana, doesn’t really play with children or work to make friends. Although interactions with others are part of her Individualized Education Program goals, it’s her relationship with her younger sister, Jessa, that I want to ensure is thriving. Sibling relationships can be hit or miss. I…

When I find the time to do an activity I need to do and enjoy doing, I feel like I’ve hit the lottery. It’s time to head back to school and begin the daily workout of getting my 13-year-old Angel, Juliana, ready. Before we head off to school, however,…

I don’t make it a habit to feel sorry for myself. Twelve years ago, when my husband and I learned we’d be raising a daughter with Angelman syndrome, we decided that pity was an emotion we wouldn’t welcome. But when tough times come your way, it can be…

Believe it or not, I have something in common with celebrities Jessica Simpson, Drew Barrymore, and Nicki Minaj. What’s our bonding link? We’ve all quit alcohol. When people decide that they’d rather not drink, there may be a host of reasons, such as mental and physical health. As…

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…