Columns

There’s something about music that my 12-year-old Angel, Juliana, just can’t resist. I’ve used this connection with sound as a means to sneak in some verbal and motor skill practice that is really music therapy in disguise. I call our quick interactive sessions “Dance Party.” When Juliana was smaller,…

It’s that time of year again. Yes, fall is right around the corner. It’s also time for an individualized education program (IEP) review meeting for my 12-year-old Angel, Juliana. IEP review meetings lay the groundwork for Juliana’s academic progress. I’ve read my share of horror stories about IEP reviews,…

I am a planner by nature. And in some small way, I envy people who are not. As we raise our 12-year-old Angel, Juliana, I have concluded that shooting from the hip and last-minute plans won’t be a part of our lives on a regular basis. A lot of unexpected…

Exercise can be a great way to combat some of the physical difficulties brought on by Angelman syndrome (AS). Getting my 12-year-old Angel, Juliana, to move is a fun and healthy endeavor. While a variety of exercises could keep Angels active, we’ve chosen soccer to get Juliana moving and…

When you’re heading back to school, many tasks vie for your attention. Getting those things in order for a big transition can be stressful and overwhelming; it’s a lot to juggle and coordinate. Our Angel, Juliana, started middle school this year, and things are going relatively smoothly…

Returning to school after summer always has its challenges. This year is even more different because our 12-year-old Angel, Juliana, started middle school. This change will mean new routines, new therapists, a new teacher, and new classroom assistants. But despite all the new things, we have had a great…

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…