Supporting Children with Additional Needs

Supporting children and young people who have additional needs understand death and grief

When someone we love dies, we all experience many emotions. Grief is the normal sad feeling we can experience when someone dies and it can affect us all in different ways – there is no right or wrong way to grieve.

When given sad news, children can experience shock and disbelief (just like adults) and may not take everything in at once. They will absorb as little or as much as they can bear at any one time. Most children need repeated explanations with pauses to enable them to digest the information. For all children the key is to talk honestly, explain in ways they can understand, reassure and repeat the information to help them process their emotions and feelings.

Children and young people with additional needs are no different but may need extra help with their understanding and ways to express feelings. Whilst we may not know exactly what a child or a young person with learning disabilities understands when someone close to them dies, they will be aware of that person’s absence and of the changes in their own life that may result.

How to explain death and grief?

Helping children with additional needs deal with their grief may present parents, carers and teachers with specific challenges. Your knowledge and relationship with the child will be a vital part in finding the best way to communicate to help them understand and express their feelings.

The quote below is from ‘A Special Kind of Grief’ by Sarah Helton

‘You may wish to protect the child and think that by masking their emotions you are helping them, but by stifling a child’s grief you are ultimately causing further problems. All children, regardless of their developmental level, need to work through their grief in their own way and in their own time. All children will display grief through their behaviours. If children do not have verbal language, and therefore lack words to express their grief, their behaviours may be the only way that they can convey their grief’

The child’s understanding may be at the level of a much younger child and they may have little sense of the permanence of death. Some children may never come to a complete understanding of the finality of death and may continue to believe that the person who died will return one day. It can be helpful to use lots of practical examples to explain how death cannot be reversed. Where possible use pictures and real objects.

It might help to use a biological approach that is practical, clear, and visual, with concrete examples, such as comparing a dead fish with a live fish or observing flowers wilting and dying. Very visual explanations are particularly important for children with autism spectrum disorders.

Here are some ideas:

Buy a bunch of flowers, put them in a vase and observe them wilt, wither, and die. Compare them to a fresh bunch of the same type. If kept, the dead flowers will illustrate that death is permanent and that the flowers do not return to life.

Purchase a dead fish from the supermarket and compare it to a live one. Even when put into a bowl of water the dead one will not move, breath, eat or swim.

You can explain a cremation by burning leaves and mixing the resulting ashes with some earth.

Take photographs of the above activities and put these into a book. This will act as a visual reminder for the many times when the explanation needs to be repeated.

Social Stories

Social stories are used by parents and professionals as a method to share social information with young children, teenagers and adults with ASD and also with other social-communication difficulties. Social stories support a meaningful exchange of information which the child/person with ASD or communication difficulties can understand. They are specifically developed to promote appropriate social behaviours in the form of a story.

This is a sample social story about death and grieving. It was written for a teenage boy, Eric, after his aide died. This social story was personalized for Eric using his passion for Disney’s “The Lion King” to help him understand that Kelly is now watching over him “like Mufasa”. It also incorporates his family’s
belief in heaven. View the story.

How to provide support with complex emotions?

All bereaved children and young people can struggle to understand and manage the powerful feelings they may experience when someone is dying or has died. Children and young people with additional needs may need some extra support in understanding that these feelings are normal and finding helpful ways to express their emotions.

Some children and young people with additional needs, may communicate their grief more subtly by a change in behaviour like eating or sleeping patterns. Some of these changes are normal for all children, particularly in the early months following a death, it is important to be sensitive to these changes over time.

In the initial days, weeks, and months the following suggestions can help:

Keep routines, expectations, and boundaries as normal as possible. Where changes must be made, preparing them in advance, try your best to manage these slowly and carefully to avoid extra upset and confusion.

Be prepared to answer repeated questions and ask other significant adults to reinforce the approach, all children will need repetition to be able to comprehend what has happened, some will need this to reassure them and others to help process the information. Many children will struggle to understand the permanency of death and often ask when a person can come back.

Facilitate their inclusion and participation in cultural and religious rituals can be a helpful way help the child or young person understand the reality of what happens after someone dies and it also can act as a reference point in the telling and reminding for those who need the repetition…. e.g., ‘after Daddy died remember at the funeral, we all said goodbye when his body was in the coffin’.

Help them to recognise the emotions surrounding death and dying – both in themselves and in other people. Explaining that we all feel sad when someone we love dies and that the mix of feelings is normal and okay to talk about.

Help other children (family & friends) to understand why their reactions may not be typical of others, all children express grief differently depending on their age, stage and personality. A child or young person with additional needs may find some of the interactions around the time of death overwhelming.

Use resources specifically designed for supporting bereaved children and young people with additional needs, the use of pictures to aid understanding and expression can be very helpful (See below book suggestions for ways to explain using words and pictures)

Older children and young adults

For older children and young adults this short video talks through some of the emotions experienced when grieving.

Mind your language!

Keep language simple, clear and appropriate to the level of understanding. As adults we often think by softening the words, we are being kinder, but all children benefit from hearing concrete language when it comes to death and dying. Explain what dead means in real terms for example –

“They died because their body stopped working.”

“Dead means the person can’t eat, or hear, or talk, because when someone dies his body stops working forever and it can’t be fixed.”

“When someone is dead, they are dead forever.”

Avoid euphemisms as they can lead to confusion, example:

“We lost dad.”(why don’t we go looking for him then?)

“He has gone to a better place.”(Sounds nice. Why can’t I go there too?)

Find ways to check in to see what they have understood and try and get them to explain in their own way what has happened. This can be an important way to assess their level of understanding and sort out any confusion that might occur.

If the death is anticipated, then break down into a few steps explaining what is expected to happen. Explain the elements of how the end-of-life care is organised by the medical staff/family carers to help them prepare for the expected. Do not assume anything. Spell out in concrete terms the things that will happen – this may fill the void of uncertainty that challenge many young people with additional needs and autism spectrum disorders.

Visit Supporting Children Before a death

If the death has happened then prepare them by walking through what happens after a person dies, explaining the funeral, what they will see, what is likely to happen before during and after. As above be specific and clear to prepare them in advance for what they will see, who will be there, how things will be organised etc.
Visit Supporting a Child at the Time of Death

Useful Websites

Winston’s Wish
How to Talk to People with learning Disabilities on Marie Curie web site
Bereaved Children with special needs, ICBN
Print-friendly PDF version of: Supporting bereaved children and young people with additional needs through grief – click here

Book Suggestions

A Special Kind of Grief. The Complete Guide for Supporting Bereavement and Loss in Special Schools. Link to book on Amazon or visit backpocketteacher.co.uk or follow @BackPocketTeach on Twitter.

We All Grieve. Supporting bereaved children who have special educational needs and disabilities. View this book on Winston’s Wish site

Goodbye Daisy A story book & teacher/parent/carer resource to help support children with minimal or no language when one of their friends dies. View the book

Books Beyond Words are award-winning wordless picture stories covering topics including physical and mental health, lifestyle and relationships, abuse and trauma, grief and bereavement, employment, and criminal justice. Each story is co-created with and for people who find pictures easier to understand than words. This includes people with learning disabilities and/or autism, people with cognitive or communication difficulties, Click here for the bereavement resources

Remembering Lucy by Sarah Helton – helps children with special educational needs and disabilities understand feelings caused by death and loss. Read reviews on Good Reads

I have a Question About Death. Death is a difficult topic for any parent or educator to explain to a child, perhaps even more so when the child has an Autism Spectrum Disorder or other Special Needs. This book is designed specifically to help children with these additional needs to understand what happens when someone dies. Read reviews on Good Reads

Supporting People with Disabilities cope with grief booklet. The first 20 pages of this booklet provide a good picture guide to explain, death, dying and funeral arrangements and associated feelings. View the booklet

Finding your Way Through Grief. A book developed by St Francis Hospice, Raheny, Dublin. View the online version. You can also request a copy of the book posted to you free of charge by going to shop section of St Francis Hospice web site.

Webinars and Videos

‘Supporting people with learning disabilities in Bereavement’ webinar, 2021

‘How to talk about death and grief with someone who has a learning disability’, NHS