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Featured Video: "Grandpa Died, Didn't He" - Teaching Ben About Death

Ben is a 15-year-old with Angelman syndrome, a rare neurodevelopmental disorder. In addition to challenges like seizures and mobility problems, most individuals with Angelman syndrome also have a severe intellectual disability, communication delay, and are often non-verbal. 

In this touching clip from the Angelman Project, Ben's parents, Pam and Malcolm, show Ben’s photo books and talk about their importance: they help Ben remember and communicate with other people about certain events in his life.

Ben's parents were very worried when Ben's grandfather became sick, because they didn't know how to teach Ben the concept of death. So they made him an integral part of his grandfather's illness, his death and his funeral, and they made a photo book for Ben which shows all the fun things Ben did with his grandfather, but also the sad parts when he got ill and eventually passed away. This book was very important for Ben, because it helped him understand what was going on and deal with his grief. He carried it around with him for months. Ben's parents feel that it's important to teach Ben about the sad parts of life as well as the happy parts, and they also want him to understand that they too will die someday.

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