Ataxia is one of those words that sounds scary before you even know what it is. It’s one of the culprits that affect the coordination, balance, and walking of my 12-year-old Angel, Juliana. A neurological disorder that affects the nervous system, ataxia can cause a person to lose muscle…
When you’re raising a child with Angelman syndrome, even simple things like a haircut need a plan of action. I no longer try winging it when it’s time for my 12-year-old Angel, Juliana, to get her curly locks trimmed. Like many adjustments we’ve made while living with Angelman…
Raising our 12-year-old Angel, Juliana, seems to be getting easier in some ways. Research is improving, and scientists are learning more about Angelman syndrome. However, I don’t think our journey is easing because of facts or research. Some of it is Juliana’s age and maturity. But the other…
Most people would agree that screaming is not the most effective way to communicate. Unfortunately, screaming has been the default for my 12-year-old Angel, Juliana, as long as I can remember. So imagine our surprise when she introduced a new form of communicating: knocking. Angels are considered nonverbal. I’ve…
Although children with Angelman syndrome may smile a lot, anxiety and other health issues can change their disposition. If my 12-year-old Angel, Juliana, isn’t having the best day, we don’t always have the option of abandoning our plans. When this occurs, my husband and I make the…
Shoe shopping with children can be frustrating. Keeping a tyke engaged while you try on multiple pairs of shoes takes time and patience. Shopping for shoes with a child with Angelman syndrome requires time, patience, and a real game plan. Buying shoes for my 12-year-old Angel, Juliana, is a…
Choosing a babysitter for my 12-year-old Angel, Juliana, is no easy task. My goal is to choose the best caregiver to stand in for us when my husband and I leave home. I don’t mind taking a few extra steps to ensure a great fit. We’ve been fortunate to have…
As the parent of a 12-year-old Angel, Juliana, I’ll take whatever help I can get to save time and extra effort. Long before the COVID-19 pandemic struck, I began relying on personal shopping and delivery services to help. To my surprise, a lesson in flexibility and acceptance has emerged as…
Parents of children with Angelman syndrome occasionally may face behavior that is challenging to control or understand. Our 12-year-old Angel, Juliana, can spiral out of control in a matter of minutes. This behavior might include anxiety in the form of irritability and crying. Sometimes, it takes extra effort to communicate…
Summer, which officially begins on June 21, is still quite a few days away. Nevertheless, I’m already in summer mode as I begin my 12-year-old Angel Juliana’s transition from school. For many, Memorial Day marks the kickoff of summer and the end of the school year. Like other parents,…
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