Angelman Syndrome News Columns

June 18, 2021June 18, 2021

When Angels Help

Angelman Syndrome News Columns

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 ... Read more

June 17, 2021June 17, 2021

The Difference a Lifeline Can Make for Special Needs Families

Angelman Syndrome News Columns, COVID-19 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 ... Read more

June 10, 2021June 10, 2021

Overcoming the Challenge of Caregiver Isolation

Angelman Syndrome News Columns, COVID-19 Columns

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 ... Read more

June 3, 2021June 3, 2021

What Communication, Hybrid Career Models, and Summer Have in Common

Angelman Syndrome News Columns, COVID-19 Columns

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 ... Read more

May 27, 2021May 27, 2021

How Minimalism Keeps My World Spinning as a Caregiver

Angelman Syndrome News Columns

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 ... Read more

May 21, 2021May 21, 2021

Wild Turkeys, Curious Cows, and Playing Hooky Give an Angel Something to Talk About

Angelman Syndrome News Columns

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 ... Read more

April 23, 2021April 23, 2021

To Redefine Angelman Syndrome, We Play the Game by Our Own Rules

Angelman Syndrome News Columns

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 ... Read more

October 16, 2020October 16, 2020

What to Know During AAC Awareness Month This October

Angelman Syndrome News Columns

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 ... Read more

September 25, 2020September 25, 2020

I’m Thankful for Angel Advocates

Angelman Syndrome News Columns

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 ... Read more

September 10, 2020September 10, 2020

Give Up Hope? Wrong Prescription, Doc

Angelman Syndrome News Columns

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), ... Read more

August 21, 2020August 24, 2020

Summer Challenges and Zoom Adventures

Angelman Syndrome News Columns, COVID-19 Columns

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 ... Read more

August 21, 2020August 28, 2020

Summer Challenges and Zoom Adventures

Angelman Syndrome News Columns, COVID-19 Columns

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 ... Read more

July 24, 2020July 24, 2020

Negotiating With a Manipulator

Angelman Syndrome News Columns

It was 5:30 a.m. and Jess needed to use the bathroom. Instead of returning to her room, she exited stage right. The sun was rising and that was all the ... Read more

July 24, 2020August 28, 2020

Negotiating With a Manipulator

Angelman Syndrome News Columns

It was 5:30 a.m. and Jess needed to use the bathroom. Instead of returning to her room, she exited stage right. The sun was rising and that was all the ... Read more

July 16, 2020July 16, 2020

Lou Needs a Unique Identifying Number, Too

Angelman Syndrome News Columns

We already have social security numbers, dates of birth, addresses, license plates, heights, weights, and ICD-10 codes. Isn’t that enough? No. It just plain isn’t enough for people with rare ... Read more