Columns

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…

Hope is a treatment that works for any disease. Why don’t doctors understand that? When my son, Lou, was diagnosed with Angelman syndrome 20 years ago (wow, that was quick), I was told there was no hope for a cure. I was informed that Lou would have uncontrollable seizures,…

As of this writing, 140 days remain until 2021 — but who’s counting? Within two weeks, my husband had two ER visits, one resulting in a hospital stay. A tropical storm caused a power outage, and then our well stopped working. As soon as we were…