Supporting children and young people with a learning disability through grief and bereavement

Children with learning disabilities experience grief when they lose someone they love, just like anyone else. Sometimes people think that it is best not to tell a child with a learning disability when someone has died in case it upsets them. However, this is mostly not helpful as it could cause them more confusion and distress.

Having a learning disability does not mean that a child cannot be affected by, understand, or learn to cope with bereavement. It is important that the child is supported to understand what has happened to the person they love and encouraged to take part in activities that help them to cope with their feelings about the loss.

Each person with a learning disability will grieve in their own way.

Signs of grief in children and young people with a learning disability

Grief may be shown differently by children with learning disabilities. This is because of differences in their understanding and communication. They might find it difficult to express how they are feeling and so changes in behaviour might show that they are feeling sad, angry, worried or confused.

Some children might seem to want to spend more time on their own when they are grieving. They may not want to do activities they previously liked doing. Other children might seem to want to spend more time with other people, becoming clingier.

Some children might become more irritable or easily frustrated. They may also display more challenging behaviour, including self-injurious behaviour.

Some children might experience symptoms in their bodies like aches and pains, or tiredness. They may also show changes in sleep patterns (finding it hard to go to sleep, waking up a lot, or sleeping more) and changes in appetite (loss of appetite or eating more than usual).

Children who show self-stimulatory behaviour (behaviours which the child does a lot and which seems to give them pleasure such as rocking or hand-flapping) might show an increase in these behaviours when they are grieving. They might be using these behaviours as a way of coping with their feelings.

Some children might go back to younger behaviours in areas such as toileting or speaking and it might seem that they have lost some skills they had before. This might seem worrying, but it is temporary.

Like other children, those with learning disabilities often move through different emotions and reactions very quickly. For example, they might go from being very upset to being settled again in a short period. This does not mean they are not upset by what has happened.

You might notice that the child starts showing these behaviours at significant dates after their loved one’s death such as Christmas and birthdays.

Communicating about grief and bereavement

The child’s communication skills will have a big impact on the way they understand what has happened and how they express their thoughts, feelings, and opinions.

It is important that the information given to the child considers their level of understanding and preferred way of communicating.

The points below are some ideas for how to talk to a child with a learning disability about bereavement:

• Make time and space for the child to talk. They will likely find it hard to start conversations about their feelings. Try to listen out for signs that they might want to talk, but do not know how to start. If your child does ask questions, use them as a guide for your conversations.
• Some children might not want to or not be able to talk about their feelings. They might find it easier to express themselves through writing or drawing.
• Try to use short, simple words and sentences to talk about what has happened.
• The child may repeat the same questions which might make you think that they do not understand. It is more likely that this is their way of coming to terms with the death of the loved one. It is helpful to repeat explanations to support the child’s understanding. You can gently check their understanding by asking them questions about what you have said.
• Family carers may be grieving themselves and they may try to hide their grief from the child to protect them. Seeing their parents/carers expressing their grief can help children to see that they are not alone and make their own feelings feel normal.
• Talk about the person who has died. This gives the child the opportunity to understand that loss has happened and that it is OK to talk about it.
• Social stories are stories that provide short descriptions about what people do, why they do it and expected responses in certain situations. Social stories can be helpful for explaining what death means and what happens at a funeral.

Explaining death in an accessible and factual way

Children with learning disabilities often have difficulty understanding abstract concepts such as death. It can be helpful to use different ways of explaining to support the child’s understanding.

• Sometimes we use figures of speech like “They have gone to a better place” or “They have gone to sleep” to talk about death. This kind of language can be confusing for a child with a learning disability. It can be helpful to use more literal language such as “sometimes people’s bodies stop working and nobody can mend it”.
• You could explain death within a life cycle using insects, plants, or animals to show this. You could even use real insects or flowers to demonstrate the difference between living and dead.
• Provide the child with simple facts about the cause of their loved one’s death, for example, illness, accident, or old age. Reassure the child that death is not a punishment and is not caused by anyone’s thoughts, wishes or behaviours. If the child is concerned that death is contagious, reassure them that no one ‘catches’ death from someone who is dead or dying.

Remembering the person who has died            

Below are some ideas for supporting children to remember their loved one who has died:

• Make a memory book of photos of the person or a memory box filled with things that remind the child of their loved one.
• Having a piece of clothing or familiar object from the person who has died to touch, hold or smell.
• Perhaps the person who died had a favourite food or drink and the taste or smell of these things might remind the child of the time they spent with them.
• Maybe the person who died had a favourite activity that the child could do.
• Your family may wish to have your own memorial service which the child could be involved in organising or taking part.

Other tips for supporting children with a learning disability with grief and bereavement 

Maintaining routine

• Try as far as possible to keep the same daily schedule as this can help the child to have a sense of safety and control.
• Try to encourage the child to do activities they enjoyed or found comforting before.

Involving the child in activities related to funerals or memorials

• Being involved in activities relating to the funeral or memorial can help the child to process their loss. Examples might be choosing what they are going to wear to the funeral, handing out the order of service sheets, or choosing the flowers.