Mary is a blogger with a mission. She wants to make the world bigger for her nonverbal daughter, Jessie. She writes about their Angelman syndrome journey and how their life changed when they found her AAC voice.Orthotics. I’ve not been a fan. Jess had seen three private-practice orthopedists and was also treated at a Shriners Hospital. Each prescribed an ankle-foot orthosis (AFO) for her right foot. Except for their size and embellishments, they were all made the same: a molded…
We arrived at the dance, and just before unbuckling her seatbelt, she said, “I love you.” Then, off she went. Isn’t this how it is supposed to be? My daughter is a young adult. She lives at home, doesn’t…
From as early as I can remember, my mom let me help her in the kitchen. I can’t say that I was very helpful, but it was her way of keeping me occupied while she worked. Mom would wrap an apron around me, stand…
As soon as Roxy and I walked into the picnic area, a mother rushed up to me and said her son was afraid of dogs and asked us to keep our distance. The party was large, at least 80 people. Roxy weighed 40 pounds,…
It’s hard to forget the first Angel I met. She was an easy baby, only fussed if tired, hungry, or had to poo. When she was barely a month old, during a bath, her mom discovered an inguinal hernia. Before…
The day my daughter came home with Speak for Yourself (SFY), she deleted it. It was Friday afternoon, the school was closed, and I freaked because I had never used an iPad before. Thankfully, Heidi at SFY answered my call and…
There was a man walking behind me. He had longer strides than I. Within a few minutes, he caught up with me, and we walked together for a while. As soon as he spoke, I realized he didn’t speak English and was Russian. We did our…
In our early years, friends, acquaintances, and strangers off the street would ask what the matter was with my daughter. If they didn’t ask, their puzzled faces gave them away. It’s what people do: They study what they don’t understand. I didn’t know how…
Forewarning: Don’t say the following phrase to an Angelman parent, or any special needs parent for that matter. “I don’t know how you do it!” I’m sure this is meant to be a compliment, but it isn’t heard that way. Of course, if you…
While navigating school and medical issues, we attended a mommy and me class. We made friends and a playgroup formed. At this age, Jess could keep up with the boys. We were invited to birthday parties and went on day trips.
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