Dying to Talk: Children with special needs & their grief

All children and young people, regardless of their circumstances, have a right to have their grief recognised, hear the truth and to be given opportunities to express their feelings and emotions.

Children with learning difficulties are no different but may need extra help with their understanding and ways to express feelings.

Helping children with ‘special needs’ deal with their grief may present particular issues that teachers, parents and carers need to acknowledge.

Children with special needs may have little sense of the permanence of death, as this is not yet developed and they long for things to be the same as they were before. In some cases they may never come to a complete understanding of the finality of death, believing that the dead person has gone away and will return one day. But this is no reason to not support them in their confusion and grief.

Click the tabs below for advice on communicating with children with special needs:

  • Children with learning difficulties are sometimes assumed to need protection from death and dying more than most or not have the capacity to understand. Whilst to a certain extent this is true, we often underestimate their abilities to cope with the tough things in life. The challenge is finding creative ways to communicate when words are sometimes not appropriate.

  • If using words, use the real ones e.g. dead and dying, not euphemisms.

  • Use as many real life examples as you can, e.g. pictures of funerals and coffins to aid understanding.

  • Acknowledge any death. To ignore what has happened implies that this is an unimportant event and denies the existence of the person who has died.

  • Try not to exclude the child from the helpful rituals of death, such as condolence cards or attending the funeral. If this is not appropriate, make sure that they are given an opportunity to say goodbye with their own simple ceremony.

  • Pre-grief work is especially important to help them prepare for an expected death. A well thought through visit to a hospice or hospital will help with this process. This could be backed up with recordings of popular medical TV programmes that depict someone seriously ill and then dying.

All children struggle with the concept of death and its permanence. Children with learning difficulties may find this particularly difficult to grasp and benefit from simple, practical examples to illustrate the difference between dead and living things. Very visual explanations are particularly important for children on the autistic spectrum. Some of these ideas may seem macabre but it is what many SEN children need.

  • Buy a bunch of flowers, put them in a vase and observe them wilt, wither, and die. Compare to a fresh bunch of the same type. If kept, the dead flowers will illustrate that death is permanent, 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. Give the dead fish a burial that replicates as far as possible a real one.
  • Explain a cremation by burning leaves and mixing the resulting ashes with some earth.
  • Take photographs of the above and put into a book. This will act as a visual reminder for the many times when the explanation will need to be repeated.
  • Visiting the dead body will help with the concept of no life, but this will need careful preparation. Feeling that it is cold, observing no breathing or movement can aid understanding that the body is no longer working.

Children do not need protection from the feelings and emotions associated with grief, but support in expressing them and reassurance that these sometimes powerful and overwhelming emotions are normal and necessary. This is even more the case for children with learning difficulties.

  • Looking at photographs or watching videos of the person who has died can facilitate expressions of sadness or anger.
  • Adults around a child should try to act as a role model, shed tears if genuinely felt, use symbols to communicate how they are feeling but also to reassure the child that they are OK and their response is natural.
  • Carrying a comfort object such as a small piece of warm furry blanket can be an aid for getting through difficult moments.
  • Offer opportunities for safe ways to express frustration and anger which for all children can play a big part in their grief. Reassure that being angry is OK. Use a huge sheet of paper and a selection of paints, wet clay, rolled up newspaper to shred by hitting against a desk.

When someone important to a child or young person dies, memories are an important part of the grief process. The deceased may be physically gone from their lives but the emotional bond will still be there. This is particularly true when a parent or main carer dies. Memories help any child to construct a sense of who it is they are grieving for and why. All have a part to play, whether of happy times or ones that were not so good.

  • A piece of fabric, from an item of clothing worn by the person who has died, carried in a pocket or made into a cushion can be very emotive.
  • Their favourite perfume or aftershave on a hanky.
  • Putting together a memory box of tangible reminders chosen by the child. This can help give some insight into factors and events that are key to the relationship with the dead person.
  • Listening to audio tapes of the voice or favourite music of the dead person may help the visually impaired.
  • Use photographs to create a timeline to spark off memories of significant events and then build the deceased’s life story.

Just like other children, those with autism spectrum difficulties (ASD) will need their grief both recognised and understood and opportunities to express how they feel. Because of the nature of their difficulties, children with ASD may not respond to the death of someone close to them in the same way as other children but this does not mean they are not grieving. They may have specific problems in conceptualising death and the rituals that surround it as a result of their information processing difficulties and problems in understanding hypothetical events. Other difficulties may relate to:

  • Mindblindness - difficulties in seeing things from another’s point of view, this may make it hard for them to understand others’ feelings and behaviours and fail to realise others can help
  • Information processing – have difficulties in understanding the rituals surrounding a death and in understanding the implications of a death e.g. that because someone has died, this means they will not be there at the weekend, to take them to school or be there to celebrate a birthday
  • Language and communication – may have difficulty understanding the abstract concepts involved, unless others use clear, specific and concrete language, and may have difficulty in communicating feelings and in asking for support
  • Preoccupations – these may become exacerbated or more intense due to anxiety
  • Imagination, time perception and memory – may lead to a difficulty in understanding the impact of a death e.g. changes to routines and anticipating how things might be in the future and in comprehending events outside their previous experience

As well as suffering the loss of the person that has died, children with ASD can be further distressed by all the changes that might happen in their day-to-day lives as a result of the bereavement.

 

If it is known that the death of someone close is expected, children can be prepared in advance and in a more gradual way. The child may need to be prepared for visits to a hospice or hospital. In these circumstances it is particularly helpful if they can be forewarned of changes, for example in the ill person’s appearance (how they might sound, look, feel to the touch etc) or for any other changes in everyday activities and routines that might result.

  • Try to keep to normal daily routines as much as possible
  • Use clear, concrete language, avoiding euphemisms and abstract ideas
  • Explain any predicted changes in routine in advance, giving details about who will be doing what and when
  • Use pictures and photographs to explain what will happen and when and how e.g. of the hospice, of the taxi that will take them to school/swimming from now on
  • Use calendars or other visual means, say to chart hospital visits, also including significant positive events such as visits to the park
  • It can be helpful to develop rituals to mark death, such as lighting a candle when an animal dies. The same ritual can then be used when a person dies.

When a death has occurred, a child may need help in understanding the concept of death as well as opportunities to express their grief.

  • Answer the child’s questions as they arise – which may mean answering the same questions repeatedly. Answer simply, and honestly, and at an appropriate level for the child’s understanding. Give enough information to answer the child’s question, but without adding a confusing amount of detail
  • Use lots of examples to explain the non-reversibility of death, but in a way appropriate to the child’s understanding. Where possible, use pictures and real objects. Try to take a biological approach that is practical, clear, and visual, with concrete examples e.g. comparing a dead fish with a live fish, observing flowers wilting and dying
  • Prepare the child for ceremonies or rituals that they may be part of by visiting the relevant places beforehand, using photographs and drawing up an explanatory story using words and pictures that will explain what is happening. Detail what the child is expected to do, and show both what other people will be doing and saying, and what will be happening around them.
  • Help the child to learn how to recognise different feelings and emotions in themselves and others as well as learning appropriate ways of expressing their feelings. You can do this by using everyday situations and events to point out different emotions in other people (e.g. on TV programmes, in magazines and stories) by using consistent and simple language to label emotions from the child’s own experiences and by using pictures. Using pictures is particularly helpful for children with ASD and a “feelings thermometer” can help a child express the intensity of an emotion. You can do this by drawing a picture of a thermometer with a rating scale up the side. Encourage the child to show where he is on the scale to rate the strength of their anger/sadness/worry. Similarly using a picture of a volcano to illustrate anger and how it sometimes “boils over” can be helpful
  • Using the ‘comic strip conversations’ technique can help others understand what a child is thinking and feeling and can provide the opportunity to discuss things that the child might otherwise find difficult. This strategy can help identify misunderstandings and highlight emotions that have perhaps not been overtly expressed or that have manifest in other ways.

When someone important to a child or young person dies, memories are an important part of the grief process. The deceased may be physically gone from their lives but the emotional bond will still be there. This is particularly true when a parent or main carer dies. Memories help any child to construct a sense of who it is they are grieving for and why. All have a part to play, whether of happy times or ones that were not so good.

  • A piece of fabric, from an item of clothing worn by the person who has died, carried in a pocket or made into a cushion can be very emotive.
  • Similarly, the deceased’s favourite perfume or aftershave on a hanky can be reassuring.
  • Putting together a memory box of tangible reminders chosen by the child. This can help give some insight into factors and events that are key to the relationship with the dead person. Try to keep in mind
  • the importance of concrete reminders of the person that had died. Try to include something relating to all 5 senses. A memory box therefore might include pictures of the person and pictures of things that person enjoyed, a small object that belonged to the deceased person, a piece of fabric that is associated with that person (that may have a particular ‘feel’ to it), a CD of music that the person enjoyed or tape of them speaking, something that reminds the child of the smell of that person (perfume, aftershave, toothpaste, deodorant etc)
  • Listening to audio tapes of the voice or favourite music of the dead person may be familiar and comforting
  • Use photographs to create a timeline to spark off memories of significant events and then build the deceased’s life story

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