Here Comes the Sun - a Column by Joelene Wand

The guessing game involved in caring for a nonverbal child

My 2-year-old son, Jude, lives with Angelman syndrome and is nonverbal, so I’ve had to become more attuned to the subtle ways he communicates his thoughts and feelings. Sometimes he clearly expresses how he’s feeling, such as by laughing while playing peekaboo, spinning in a sensory swing, or (gasp)…

Supporting friends and family while caregiving

Being a caregiver for someone living with Angelman syndrome demands constant physical, mental, and emotional presence. Recently, we’ve become increasingly vigilant and attentive to the needs of our son, Jude, who’s 2 years old and has Angelman. Life doesn’t stop even as we’re caring for the seizures and…

Advice for parents new to an Angelman syndrome diagnosis

It’s been a year since our son, Jude, was diagnosed with Angelman syndrome (deletion of the UBE3A gene) at 16 months old. The past year has been a roller coaster of appointments, endless research, and overwhelming emotions. For the first few months after his diagnosis, I’d stay up late going down…

Dealing with caregiver guilt is part of the Angelman journey

In the past month, I’ve felt pangs of guilt about several things while caring for my 2-year-old son, Jude, who lives with Angelman syndrome. I feel guilty while helping Jude learn to communicate or develop other skills for daily life. I’m fearful that I’m holding him back from learning…

How we’ll be raising awareness on International Angelman Day

As a caregiver, I understand that raising awareness about Angelman syndrome requires us to proactively educate the public. This can be done via social media or by organizing and participating in advocacy events. No gesture is too small. We’re encouraging our community to show support on International Angelman…

Processing the complexities of our son’s happy demeanor

Prior to receiving our son Jude’s diagnosis of Angelman syndrome last April, when he was just 16 months old, we beamed with pride that he was a social butterfly who brought joy to everyone he met. Jude’s cheerful personality has always drawn attention. Passersby, checkout cashiers, and waitresses often…

Reflections after a year of early intervention therapy

In September, my husband and I marked a year since my son Jude, then 9 months old, started early intervention therapy, the standard of treatment for managing speech, movement, and balance disorders in those living with Angelman syndrome. A doctor who’d been treating Jude for sleep…