Why Do I Need My Special Needs Child to Understand Death?

My step father recently passed away. DC adored his Grandpa and the feeling was mutual. When I went to look for old photos for the service, there were two I was determined to find. The first was of DC on a bike with his Grandpa running alongside him, holding him up.

The other was from my brother’s wedding when DC was around five years old. The photo was taken in the hotel room before the wedding. I was standing off to the side and there were DC and his Grandpa in their tuxedos standing in front of the mirror, arms out to the side as if they were saying “Taa Daa! Look at us!”

As I searched, I remember watching this moment between them in front of the mirror and thinking I was about to take THE cutest photo that’d ever been taken. That’s when my mother walked right through the shot. I’d missed the moment with the camera. The photo I’d been searching for existed only in my head. All these years later, it is still right there in my head as if it was yesterday.

I wasn’t sure how to explain Grandpa’s passing to DC.  He’s never lost someone close to him, and I wasn’t sure that he’d understand. I’ve tried many times in different ways to explain death, but I’ve never been sure that he really understood.

In his beloved Disney movies, characters may die but usually someone gives them a kiss to wake them up (I believe that this was part of the reason that DC insisted on kissing Grandpa on the forehead more than once at the wake and the funeral a few days later).

The afternoon it happened, I made the attempt to tell him what had happened before we left for my mother’s house. I told him that Grandpa had been very sick and he was very old (I added that so I wouldn’t frighten him into thinking that if he got sick, the same would happen to him) and because he was just so sick, he died.

I specifically did not use the phrase “passed away” so as not to confuse him with different words.

“Do you understand what that means, DC?”


“Grandpa loved you very much and he did not want to leave you. It was not his fault,”


“This is not like your movies. He will not be able to come back, like Snow White. He died like Cinderella’s father. Do you remember that Cinderella’s father did not come back after he died? I am sure he wanted to come back but he couldn’t.”


Why People with Special Needs Should Understand DeathHis Grandpa had been suffering from dementia for the last few years and was well past the point of recognizing anyone, so DC hadn’t seen him in awhile. He asked for him every once in a while when we went to my mother’s, and we’d explain that Grandpa was sick and in his new home where there were lots of people to take care of him. I’m not sure he ever really understood though. Maybe DC thought Grandpa was upstairs taking a nap.

When we arrived at her house that night she brought out the gifts she’d been holding on to. DC opened his card, and, as he always does, read it out loud.

He reached the signature and read: “Love, Hugs and Kisses, Grandma and Grandpa.”

He stopped and looked at me. I could see he was a bit confused.  He said “Grandpa ‘is’ died.”

Honestly, I didn’t expect that. He really had been listening, paying attention and possibly understanding a bit of what I’d explained. I told him Grandpa wrote the card on DC’s birthday a few weeks back and that he was very lucky to have it (of course, Grandpa was too sick to really sign the card, but DC didn’t need to know that).

This seemed to make sense to him and he no longer looked confused.

On the way home that night, I mentioned to Doug how I still wasn’t sure that DC understands what death means and how much I really want him to understand it.

Doug asked me why it’s so important to me that DC understands. Why couldn’t I just let him believe what he believes and leave it at that?

I understand that thought process. I understand wanting to protect him from anything bad or sad, I do.

So why is it so important to me that he does understand?

“Because one day I’m going to die and I want him to understand that it is not something one wants to do.  I never want him to think that it was my choice. I NEVER want him to think that I just left him.”
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