Resources to Explain Death and Grief to Person with Down Syndrome or Intellectual Disability

This is an article with resources to explain grief and loss to anyone with an intellectual or developmental disability, but focuses on explaining grief to people with Down syndrome. It has been updated from the original, published in June 2020. There may be affiliate links in this post, meaning if you make a purchase using my link, I make a small commission and you don’t pay more – so thank you!

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In 2016, my children were with me when my Grandpa Jack died.

One month later, they were in the room as I held one of my Grandma Jean’s hands and my brother Dana held my Grandma’s other hand as she took her last breath and died.

6 months later, they were with me as my brother Dana died.

One year later, we had to deal with the loss of our family, their Dad leaving and the disruption of their world, moving from California to Hawai’i.

Through both physical death and real life transitions that birthed a grieving process, my children have had experience in the ways of grief and loss. That includes my daughter with Down syndrome.

Assumptions About People with Down syndrome, Grief and Loss

I think there is an assumption that people with intellectual disabilities do not understand death. I know that when I had to explain death and loss to my daughter with Down syndrome, I wondered if she understood what I was saying. Death seems like such an abstract concept, after all, and abstract concepts are not usually favored by people with Down syndrome.

But she did understand.

Death was much easier for her to grasp than it was or has been to process grief. I’ll talk a little more about that in that the next section, but first, just sticking with death and explaining death.

Books to Help Explain Death to a Person with an Intellectual Disability

We read books to help explain and process the passing of my brother and grandparents. Especially for the passing of my brother, because while my kids were able to be there with the passing of my grandparents, they did not see my brother while he was in the ICU. It was like he was there one day, vital, laughing, tossing them up in the air, and the next, nowhere. Just gone.

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While The Little Soul and the Sun is one of my favorite books, ever, A Hug from Heaven is the book that I would pick first for explaining death and loss to a child with an intellectual disability. My daughter loves it. It can go with any faith or belief system: it does talk about God, but the focus is on an eternal connection and love.

For a teen or an adult, I’d go for The Soul and the Sun, because I think it really helps explain things that are hard to understand – the, “how could God let this happen?!” kind of thing, well. I’d actually recommend it for people without an intellectual disability too!

Wonderful Resources for Explaining Death to People with Down Syndrome

Amy Allison of the Down Syndrome Guild of Greater Kansas City has collected these wonderful resources and shared them with me for the purpose of this blog post.

These are gathered at the end of this post for your downloading ease.

Videos Explaining Death to an Individual with Down Syndrome or other Intellectual or Developmental Disability

I haven’t actually used videos that explain death or talk about death with my kids.

I did like the tone of this particular video though, and it echoes how I feel: that we need to be clear and honest while talking about death or circumstances related to grief.

I did not make up stories, tell my children that my brother was sleeping with the angels or anything like that.

Rather, because of my spiritual beliefs, I told them that Uncle Dana had moved beyond this life, that his spirit was free and alive and well but that his heart had stopped beating, and that his body had died.

When my kids have seen me absolutely lose my mind with grief, I try to be careful to tell them that I simply miss Dana, and I wish he was with us in this space. But that we will see him again. We just have to be patient.

Many Types of Grief

Dealing with Grief Other than Death

This is the part I was talking about before – grief does not just happen with death.

Our kids have grief in transitions, and changes in life.

Helping them to process their feelings and understand the experience as it is happening is one of the greatest gifts we can give our children.

Understanding moves, divorce, loss of friends, major shifts in their world: these are all occasions to honor the grief experience and help our children through. I think that our kids deserve honesty and can handle it; it’s just important to break concepts down simply, using plain English.

I don’t lie to my daughter about anything. When she experiences discrimination by dint of disability, I tell her what is happening, and explain what is going on. It’s uncomfortable and never feels good, and there is grief involved (see my post, “I Hate Down syndrome“). But accepting the pain means we find ways to move beyond it – it lessens. It becomes less acute, and we can point our minds and hearts in directions that serve our values and spirits better.

The Printable Resources for Helping Individuals with Down syndrome or Intellectual Disabilities Understand Grief, Death and Loss

These are FREE – you enter your email address and it they are mailed to you.

Download The Resources Now

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