Columns

Ask an Angel’s parent if their kid loves water and you may not get the answer you expect. Do most children love water? Probably. Are all Angels fascinated with water? Perhaps. My 11-year-old daughter, Juliana, is one of those Angels who love water play. Shortly after her diagnosis, I…

Early intervention efforts for my 11-year-old daughter, Juliana, who has Angelman syndrome, were not greeted warmly in my house. I can admit that now. These early intervention services included in-home therapy and pre-K programs for babies and toddlers with special needs. The fact that I didn’t previously understand the process…

Independence is surely one of those things that can be taken for granted. In the U.S., we celebrate our freedom on Independence Day, July 4, but this time of year also makes me think about the independent strides of my 11-year-old daughter, Juliana. Made for walkin’ Juliana has…

Managing caregiving with daily living is truly a balancing act. There are personal responsibilities that must be met in addition to managing the details and care of another person. Another me to do the laundry In an ideal world, I would have a clone. My clone would handle all the…

Alert the media! Not only did our angel get dressed independently this morning but she also put the lid back on the Play-Doh! For years, Jessie left a trail wherever she went, just like in the movies, except that her trails originated from the bedroom out. She runs down the…

A lifeline can come in many shapes and forms. In this instance, I’m not referring to one on a game show where you call a smart friend and they help you with an answer. I’m speaking of the ones that improve the lives of special needs families. Sometimes these…

Isolation for caregivers can be a real thing. However, I apply my glass-half-full observations to help me battle this unwanted occurrence. Limited interaction or activities outside a caregiver’s immediate home can certainly lead to isolation. Managing regular activities may be difficult, so some caregivers and their families may choose to…

Communication can be one of the most challenging things about Angelman syndrome. People with Angelman syndrome — “Angels,” as they are known — are considered nonverbal. I don’t like the word “nonverbal” much because some people mistakenly believe that verbal words are the only way to communicate. When people meet…

Being a caregiver for someone with Angelman syndrome means more: more appointments, challenges, changes, and other big things. However, I’m taking a liberating approach to a life of more by countering it with minimalism — a life of less. It’s more than just a chair My minimalist…

Little did we know what surprises were in store for the day ahead. As the sun was rising, my husband saw that we had an unexpected guest. Underneath the bird feeder was a young tom turkey. He is a quiet visitor and runs off at…