Special needs

Explaining death to kids with special needs is extra complicated

"I’m friends with too many strong, beautiful people who've lost their kids at very young ages."

Syona-special-needs-death

Syona has started asking questions about death. Photo: Anchel Krishna

My nearly-five-year-old daughter Syona has started to express an interest in our family tree. She’s always asking me about “Mommy’s mommy,” and working her way backwards from there. While we were in the car a few weeks ago, she asked about “Mommy’s daddy’s daddy” (my paternal grandfather, whom we’ll call Papaji*). Papaji passed away when I was a teenager, so I told Syona he died a long time ago. And then the questions poured out: “What does that mean?” and, “Why did he die?” and, “Where is he now?”

I was stumped. I’m a big believer in not using euphemisms at Syona’s age as I think they’re unnecessarily confusing. Syona is naturally inquisitive and frequently peppers me with questions, but I wasn’t mentally prepared for this conversation. The reason I think I was caught so unawares is because most of the advice I’ve received about explaining death to kids involves recent deaths. So I tried to stick to the facts: I told her people get sick sometimes and their bodies stop working, especially if they’re old like Papaji. I told her that people who died were gone forever, but we could keep thinking about them—and loving them—for as long as we wanted.

However, I felt an uncomfortable knot in my stomach after the conversation. Syona knows quite a few “old” people and I suddenly worried she would get anxious about them dying. She knows that people catch colds and flus, but would she be confused by my explanation that sometimes sick people die? She tends to get fixated on people who are ill already, so would this just increase her concern?

Then there’s the hard truth that people aren’t always old when they pass away. I’m friends with too many strong, beautiful people who’ve lost their kids at very young ages. Syona’s cerebral palsy adds an extra element of complexity to the topic. At school, she’s friends with kids who have a wide range of physical disabilities and medical complexities that impact their overall health. When I recently talked to the mom of a teenage daughter with special needs, she told me how they’d attended four funerals for her daughter’s friends this past year alone—and how talking about it with her daughter didn’t get any easier.

When it comes to tough conversations, like talking about Syona’s disability or the death of loved ones, I believe in being honest and age-appropriate in my explanations. But that conversation about Papaji left me bewildered. One day, Syona will ask me more questions about death and they will become increasingly difficult to answer. So, how do I continue to explain it in a way that is both upfront yet right for her age?

Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary five-year-old with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.

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