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.
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.
In This Post You Will Find:
- Assumptions About People with Down syndrome, Grief and Loss
- Books to Help Explain Death to a Person with an Intellectual Disability
- Wonderful Resources for Explaining Death to People with Down Syndrome
- Videos Explaining Death to an Individual with Down Syndrome or other Intellectual or Developmental Disability
- Many Types of Grief
- The Printable Resources for Helping Individuals with Down syndrome or Intellectual Disabilities Understand Grief, Death and Loss
Assumptions About People with Down syndrome, Grief and Loss
The assumption is that people with Down syndrome do not understand grief, death or loss…
Many of the resources listed in this post start out with a similar phrase, which leads me to think that this is a pretty common assumption.
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.
Books to Help Explain Death to a Person with an Intellectual Disability
We read books to help explain and process:
The Little Soul and the Sun: A Children’s Parable
(on conscious choices to be born and have an experience)
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.
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
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.
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. I do not store your email address or add you to a list or anything; it’s completely, totally free, courtesy of Amy Allison. Thanks, Amy!
Down Syndrome Related Posts
A smattering of some of the posts I've written, because you might want to read more!
1st of all your kids are gorgeous!
Is ei not automatic based on diagnosis there? I hope you’re able to continue on with her therapies.
I don’t get it? Are you talking about something other than EI? It is supposed to be available for any child with ds regardless of income, etc. A diagnosis alone is supposed to qualify a child..What is the deal?