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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…

Dear Angelman syndrome, We read your definition, and we didn’t like it. Stating that a person with Angelman “can’t do this” and “can’t do that” wasn’t going to work for us. We opted for “I think we can” instead. Our angel, Jess,…

Because people rarely see an augmentative and alternative communication (AAC) device in action, they don’t recognize it. Most assume Jessie carries an iPad for entertainment. Though talking is amusing, to her it is no game. October is AAC Awareness Month.(Courtesy of Mary Kay) When…

When my daughter, Jessie, was 2, she saw a balloon while we were waiting in line at the market. I pulled it closer for her to see, then let it go. She smiled as it floated to the end of its string. After observing this, the shopper next to me…