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What to Know During AAC Awareness Month This October

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…

I’m Thankful for Angel Advocates

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…

Give Up Hope? Wrong Prescription, Doc

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,…

Summer Challenges and Zoom Adventures

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…

Negotiating With a Manipulator

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 incentive she needed to begin her day. Every time I redirected her to bed, she pushed the covers…

Lou Needs a Unique Identifying Number, Too

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 diseases. We need one more number. A unique identifying number that can cut through all the mustard, all the red…

Lou’s Leg Has Been Broken for Over a Year

My son Lou’s leg has been broken for 18 months. It must hurt like crazy. If I had a broken leg even for a day, I would surely be crabby, despondent, and mean. But not Lou. Because he has Angelman syndrome, my 21-year-old son cannot speak, but he is often…