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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.

Part two of a series. Read part one here.  Have you ever gone to bed, got comfy, finally relaxed, and then realized you needed the bathroom? During inconvenient times, I’ve often wished that someone could “go” for me. No doubt, Jess feels the same way.

There was more brewing with Jess than her learning differences. She was 4 when we began toilet training. This went well until it didn’t. Long story short, she was having urinary tract infections (UTI). Our pediatrician suggested we see a pediatric urologist.

Every Angelman syndrome person has a different story. This is the beginning of ours. Once Jess was diagnosed and labeled with cerebral palsy (rather, misdiagnosed), we were directed to an early intervention program. Through play, she was immersed in language and cognitive skill development. I…

(Courtesy of Mary Kay) It’s rude to talk about someone behind their back. It’s even more impolite to talk about them in their presence. Unfortunately, this happens to the nonverbal all the time. Even worse, it’s assumed that because Jess isn’t talking, she doesn’t understand what’s…

Words a doctor should never say to a mother: “Have another child and be happy.” What does he mean by this? What about this child? What can be done for her? He said, “She will never walk or talk, just love her as best you…