Each child with a learning disability or special education needs and disabilities (SEND) is different and as a parent or carer you will have a unique understanding of how to meet their specific needs. This resource is intended for guidance only and it may be that you need to adapt some of the approaches in line with the needs of your child and your family.

All children and young people, regardless of their circumstances, have a right to have their grief recognised, to hear the truth, and to be given opportunities to express their feelings and emotions.  Children and young people with learning difficulties are no different but may need extra help with their understanding and ways to express their feelings.

Levels of understanding and awareness of what death and dying mean will differ from child to child. A bereaved autistic child may need concrete examples from nature to aid understanding. A child with profound and multiple learning disabilities may not be able to fully understand but will sense if someone significant in their life has died and will be aware of their absence, that others around them are emotional, and that familiar routines have changed. 

Should I tell my child with a learning disability that someone important to them has died?

Telling a child that someone has died can be daunting and it’s often assumed that children and young people need to be protected from the difficult realities around death and dying, or that they do not have the capacity to fully understand. However, no matter the level of understanding of the child, it is important that the truth is communicated in a way that is supportive to them and helps them cope with significant change and loss in their life. Every child grieves in their own way and may display a wide range of reactions, emotions and behaviours. If a child’s understanding is younger than their biological age, communication and support will need to be adapted to suit their needs.

Where a child has very limited understanding, they may still sense that someone important to them is missing and that those around them are upset. While it may not be possible for them to fully understand that someone has died, they may still need comfort and reassurance.

How can I tell my child with a learning disability that someone important to them has died?

When someone special to your child dies, it’s important to acknowledge the death. Ignoring what has happened might suggest to your child that what has happened is unimportant, deny the existence of the person in their life, or suggest that their feelings are not valid. 

Share the news with your child as soon as possible in a place that’s familiar and comfortable where they can be supported, away from distractions. How you tell your child will depend on their level of understanding. Children's understanding of death at different ages varies and some children with learning difficulties may have an understanding that is younger than their actual age; some may never come to a complete understanding of the finality of death and may continue to believe that the person will return one day. They may long for things to be the same as they were before.

It is important to communicate in a way that is suitable and familiar to your child and takes account of what they may already know or understand. In some cases you may need to use special words or symbols to communicate that someone has died. For some children it can be helpful to use concrete examples from the natural world that are practical, clear, and visual, such as comparing a dead insect or flower with a live insect or flower.

If your child is able to understand a verbal explanation, use simple language at a level appropriate to the child’s understanding. Try to avoid phrases such as ‘lost’, ‘gone’ or ‘passed away’ as although these may seem kinder, they can be confusing as your child may expect the person who has died to come back or to be found. Using direct, concrete words such as ‘dead’ and ‘died’ can help your child understand what has happened.

A child with profound and multiple learning disabilities (PMLD) may not have the ability to understand that someone has died. However, they may be conscious that their routines have changed and that a usual care-giver is absent, and they may feel distress. Try to keep to routines where possible and provide reassurance. It can help if everyone involved in the child or young person’s care is made aware of how they might express stress, for instance they might stim, flap, shout or become very withdrawn. 

How can I answer any questions my child with a learning disability may have?

Your child may ask questions about the person who has died and it may be necessary to repeat the information many times and to answer the same questions repeatedly to help them make sense of what has happened. Answer questions honestly using the same language and keeping explanations consistent. 

If you’re grieving yourself this can be very difficult so it can help to ask another trusted adult to support you and to step in and help if necessary.

How might my child with a learning disability react to news that someone important to them has died?

The way any child reacts to being told that someone important to them has died will be affected by a number of things, including their understanding, their relationship with the person who died, how much they saw them, and if the death was expected. A child with learning difficulties may show their distress in different ways to others; they may seem indifferent and unaffected and take time to process the information, or they may laugh and make noises, cry and scream or appear confused, worried or fearful. They may also be concerned about changes to their routine, and their eating, sleeping and toileting habits may change. 

All of these reactions are valid and it’s important to reassure a child and support them in expressing their feelings.

Should my child with a learning disability go to a funeral or memorial service?

We know from families that we have supported at Child Bereavement UK that being included in a funeral or memorial service can be extremely helpful for children and can aid their understanding of what is happening.

There may be ways to enable your child to take part. Having another adult to help care for your child during the service or who can distract them or take them outside if they need to take a break, can help relieve the pressure on you. Your child might also like to bring a favourite toy, game or comforter with them for reassurance. However, if it is not possible for your child to go to the funeral, make sure that they are given an opportunity to say goodbye with their own simple ceremony. This might involve making something together to remember the person who has died, planting a tree in their memory or making a memory box together. Watch our animated short film Remembering someone special who has died for ideas.

You can help prepare your child for a funeral or memorial services by visiting the place where the service will take place beforehand or by making a multisensory or social story using photographs with accompanying text that will explain what will happen. Use as many real-life examples as you can, such as pictures of funerals and coffins to aid understanding.

You may also find it helpful to watch the following short animations with them which explain funerals: What happens at a burial? and What happens at a cremation?.

See our resource Bereavement and pupils with SEND for guidance about sensory and social stories.

Should my child with a learning disability view the body of the person who has died?

Viewing the body of someone who has died may feel like a very grown-up thing for a child to do and many adults will understandably have reservations. However it may be helpful in explaining the concept of no life, but this will need careful preparation so that your child knows exactly what to expect. Feeling that the body is cold and observing no breathing or movement can aid their understanding that the body is no longer working. If you need to talk this through with someone, you can call our Helpline for further guidance.

How can I build resilience in my bereaved child with a learning disability?

Building resilience is especially important for bereaved children. It is possible to support children to feel good about themselves and to help them to find ways to manage any worries and uncertainties that come with the huge change in their life that bereavement brings. 

Prepare your child for any changes to their daily routines in advance, by telling them who will be doing what and when. It can be very reassuring for children to know who will be taking them to school or to activities if this has changed. 

It’s important to tell your child’s school or others involved in their care about any additional support they might need or any changes in behaviour such as regression, stimming or changes in appetite.

How will my child with a learning disability grieve?

Any changes in behaviour can be an expression of grief in a child or young person and as a parent or carer you know your child best and are most likely to notice any changes particular to them.

Children often demonstrate grief through changes in behaviour and may show increased need for sources of comfort such as stimming, ticks, chewing and other sensory self-soothing behaviours. 

Anger is a common emotion when grieving and can result in challenging behaviour. Give your child reassurance that it is OK to be angry as long as it’s done in a way that’s safe for the child and others around them and that they don’t hurt themselves or others. See below for ideas on helping your child cope with difficult feelings.

Grieving children sometimes regress in their learning, behaviour and personal care. This is usual and is likely to be temporary. 

How can I help my child with a learning disability cope with their grief?

Help your child to learn how to recognise different feelings both 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 (for example on TV programmes, in magazines and stories), using consistent and simple language to label emotions from the child’s own experiences, and by using pictures.

Remember that children will take their cue from the adults around them, so it is helpful if you can be honest about your own emotions, showing you’re upset if you need to but reassuring your child that you are OK and that your response is natural.

Looking at photographs or watching videos of the person who has died can facilitate expressions of sadness or anger, while allowing your child an opportunity to think about or remember the person who has died. Carrying a comfort object such as a small piece of blanket can be an aid in getting through difficult moments.

Offer opportunities for safe ways to express frustration and anger. These could include physical activities, music-making, or creating a ‘scream box’ (a box stuffed with paper and a cardboard tube to shout into).  If they need to let out their anger or frustration, it might help them to punch a cushion or a pillow, if this is possible.

How can I prepare my child with a learning disability when someone important to them is not expected to live?

If a death is expected, it can be helpful to prepare your child in advance in a gradual way that the person is not going to get better and that they will die. Your child may need to be prepared for visits to a hospice or hospital. It helps if you can tell your child about any changes they might see, such as how the ill person might look or sound, and to explain any changes in your child’s day-to-day activities and routines that might happen.

How can I help my child with a learning disability remember the person who has died?

When someone important to a child or young person dies, memories are an important part of the grief process. Whilst the person may be physically gone from the child’s life, the emotional bond will still be there. This is particularly true when a parent or carer dies and children with additional needs often have a number of adults in caring roles, so will be affected if one of them dies. Memories help a child to construct a sense of who it is they are grieving for and why. It is therefore important to help a child with additional needs to remember their special person where this is possible.

Put together a memory box of tangible reminders of the person chosen by the child, where this is possible, that are of particular relevance to them. Try to keep in mind the importance of concrete reminders of the person who has died; you might want to try to include something relating to all five senses, for example:

Vision: pictures of the person, pictures of things that the person enjoyed, or a small object that belonged to them. Photographs and memories of significant events can also help to create a timeline and story of their special person’s life. 

Touch: a piece of fabric that is associated with them (that may have a particular ‘feel’ to it) such as an item of clothing to carry in a pocket or have made into a cushion 

Hearing: a recording of music that the person enjoyed or of them speaking.

Smell: something that reminds the child of the smell of that person, such as a cotton handkerchief sprayed with their perfume or aftershave, which can be comforting. 

Taste: a picture of the person’s favourite food, such as a cake can spark memories around birthdays and other significant events. As a separate activity you could also talk about the person when preparing food that they enjoyed, if this is possible.

Looking after yourself

Caring for a bereaved child with learning difficulties while grieving yourself can be very demanding. You are a role model for the child in your care and in order to be well equipped to support your child it is important that you look after yourself too. You can show your child the importance of valuing yourself by making time for you. It can be immensely difficult to try to meet all your child’s needs when you are also grieving so be kind to yourself and don’t try to be a ‘super parent or carer’. Watch our short guidance film about ways to look after yourself when someone has died.

Visit our page: How we can support you for more on our services.

You can also call our Helpline 0800 02 888 40, email [email protected], or use Live Chat on our website.