My daughter Juliana has been wiggling. Upon first glance, the wiggling is really cute. It’s something between a dance and a silly walk where she arches her back. When Juliana does her silly wiggle dance, we laugh, and she does it more to capture our attention. I hope it’s merely…
When you’re living with Angelman syndrome, a well-executed plan makes the difference between tears and smiles. As the parent of an Angel, I know I can’t plan every aspect of our lives. However, attending important events like my daughter’s middle school football game requires some thought and finesse to…
Hearing the words “lifelong care” is enough to shock, frighten, and cripple a new parent. I see those words often when I read about Angelman syndrome (AS). But lifelong care becomes more manageable with a higher level of independence, and that’s what I’m working to foster with…
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…
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