Loss and Change 

Wednesday, February 20, 2013 Autism Speaks View Comments

 

Liane Kupferberg Carter is the mother of two adult sons, one of whom has autism and epilepsy. As a community activist, she co-founded the special education PTA in her school district, as well as the town’s sports league for children with special needs, and co-authored a parent resource handbook for the school system. As a member of the Autism Speaks’ Parent Advisory Committee, she helped edit the Transition Tool Kit. She also serves on the Stakeholder Board of the Autism Science Foundation, and has reviewed grants for both organizations.

“I have sad news,” Mickey said, coming off the school bus. “Molly died.”

Molly was a beloved administrative assistant at his school. She’d been battling lung cancer for two years.

“I feel so sad,” Mickey told me. “Even my Muppets are sad.” That’s his way of underscoring the intensity of his feelings. 

All through dinner and into the evening, he continued to ask about Molly. “Why did she die?” “Was she old or sick?” “Does she have children?” “When will she be buried?”

Early the next morning we emailed his teacher a heads up that Mickey was upset. She wrote back: 

“Mickey was talking about Molly's death here, too. Another student made a big announcement in the classroom; we as teachers, felt it was up to parents to decide if and how they wanted to let their children know—it was unfortunate that {the other student} announced it that way, but that's the way it goes sometimes. We did acknowledge Molly's death to Mickey and helped him through it here. We will continue to do so should he continue to want to express himself.” 

We’ve struggled down this road with him many times in the past few years. I come from a large family, and many of my elderly aunts and uncles have died. Every time Mickey has asked the same question: “Were they old or sick?” In the past year and a half, two of our four cats have died, and recently he has seen several family members and friends lose loved pets. Each time he has asked the same old or sick question, followed by, “When are my other cats going to die?”

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