Autism After 16
Published on Autism After 16 (http://www.autismafter16.com)



By Liane Kupferberg Carter [1] Feb 19, 2013 11 Share [2]

Loss and Change


Roses between two tombstones.
iStockphoto

“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?”

It’s hard to talk about death in general; even harder to explain it to Mickey. We tell him that even after someone dies, the love we feel for that person lives on forever in our hearts. But at 20, he is still very literal and concrete in his thinking, so we’re not sure how he processes this idea of death.

What we do know is that he is grappling with a lot of loss and change this year. All his friends from his old school’s self-contained life skills class have gone on to postsecondary programs; Mickey is spending his last year as a student in a transition program in a different school. My husband Marc and I have been visiting day habilitation programs, trying to find one that will meet Mickey’s needs. We are calling whatever comes next “college.”

“Do I have to take a plane to college?” he’s asked several times. We offer comfort and reassurance. “You’ll still live here at home with us and the cats,” we tell him. Twice in the past six months he has wound up in the emergency room; he is feeling vulnerable. Again and again he says, “Come in my room and sit with me.” Hoping to help him find words to express what he is feeling, I have asked him, “Why do you want me to sit in here?”

Each time, he says simply, “Because I love you.”

Getting on the school bus the next morning, he noticed one child was missing. “Where is she?” I heard him ask the driver. “Did she die?”

He was brooding; his anxiety was palpable. All day I worried, knowing that when he feels that way, he can sometimes gets belligerent. Whenever the phone rang, I expected it to be his teacher, reporting a meltdown.

But the call didn’t come. At the end of the day the teacher sent an email:

“Mickey and I talked about Molly this morning. I suggested he make a card for her family and he liked this idea and made three. He also wanted to buy flowers for the family from the A&P. A staff member who is going to the wake tonight will take his cards and flowers to the funeral home; it was very thoughtful of Mickey to want to do these things. We know he has a good heart :0)” 

Indeed he does. And the heart, as they say, is a very resilient little muscle.


Loss and Change [3]

About the Author - - Columnist

Liane Kupferberg Carter is the mother of two adult sons, one of whom has autism and epilepsy. Liane is a journalist whose articles and essays have appeared in more than 40 publications. As a community activist, she has worked with both national and local organizations.