Wirral CAMHS LD Bereavement Guide

Supporting Children with Severe Learning Disabilities with Bereavement and Grief

Children and Young People’s Learning Disability Service Wirral

Introduction

Children and young people with severe learning disabilities still experience grief, but they may show it differently to other children of the same age. When someone familiar dies, children with a learning disability will experience a sense of loss. They may not be able to understand what death and dying means, but they will be aware of someone important missing from their life. If they lack the vocabulary or communication skills to express their distress, it is likely they will show this through their behaviour. And even children with very limited understanding of emotions can pick up on the heightened emotions of others around them and are likely to react in some way.

Many children and young people with learning disabilities rely on routine and predictability to feel safe. When someone involved in their care dies, there is likely to be changes to their routine (even if this is temporary) e.g. a change in activities, a different carer, more visitors or visiting unfamiliar surroundings with strange sights, sounds, smells and textures.

It is important for children with learning disabilities to always have their grief recognised and for you to find appropriate ways to comfort their distress. This is likely to be different for each child, and some children may find their own ways of soothing their distress quite effectively. However, many children with learning disabilities may struggle to know how to regulate their emotions, especially in times of heightened stress.

Depending on your child’s developmental level and ability, they may try to make sense of what has happened by asking questions or trying to find information. They may ask the same questions repeatedly. This may be due to their need for repetition to understand and retain information, or may indicate a difficulty in recognising the permanence of death. This may also explain why a grief reaction can change or reappear over time, as the young person starts to understand that the person who has died will not be returning. Repetitive questioning may also be your child’s way of seeking reassurance and predictability (from your answers) when they are feeling insecure.

It is really important that children and young people with learning disabilities are informed about the death of an important person, to allow them to try to make sense of changes in their life and support them to express and respond to their emotions.

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

3

The stages of grief

4

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

The stages of grief

A grief response can include some or all of the following stages and children may jump back and forth between them over time: • Denial (acting/thinking/pretending the death hasn’t happened) – this helps to slow some of the painful thoughts and images associated with a bereavement, giving time to absorb and understand what has happened.

• Anger (temper tantrums, verbal and physical aggression aimed at self, others or property) – when we feel extreme emotional discomfort, such as loss, anger can be an easy outlet. Children and young people with learning disabilities may struggle to recognise more subtle emotions and can misinterpret sadness, anxiety and loss as anger.

• Bargaining (feeling helpless, out of control and desperate can lead to children wanting to find something they can do to stop or reverse a death) – this may include ‘magical thinking’ that they can do something to bring the person back, or memories of times when the child felt they upset the person who died, or focussing on regrets.

• Depression (when the death feels unavoidable and the loss is felt most acutely) – children may withdraw, isolate themselves more, refuse previously enjoyable activities, show changes in mood, appetite and sleep.

• Acceptance (no longer resisting or struggling to make things different) – sadness and regret may still be present, and children and young people with learning disabilities may seem to accept the death at some points then deny or feel angry about it again at a later stage.

Children and young people with learning disabilities may move quickly between real sadness and normal activities, and this can be a safety mechanism to prevent them becoming overwhelmed by emotion. A child or young person may initially show no reaction at all when they are told about a loved one’s death. This does not mean they are unaffected by the loss.

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

5

How a child or young person with a learning disability may react •S eparation anxiety (becoming more upset when leaving main carers) – A child who experiences loss but cannot understand the reasons behind it may feel abandoned or rejected, and they could become more clingy to their remaining caregivers as a result. Your child/young person may be fearful that someone else will disappear if they are not with them. Try to ensure your child/young person can stay with a trusted carer if they do need to be left initially. Using transition objects or giving them something to ‘look after’ until you return may help. Explain (in short, simple language) where you are going and when you will be back e.g.

“Mummy’s going to the shops, I’ll be back at tea time”. Make sure you are on time so they don’t worry.

6

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

• Anger (temper tantrums, verbal or physical aggression towards self, other or property) – difficulty understanding and communicating their emotions can often lead children/young people with learning disabilities to express their emotions and frustration through destructive behaviour. Let them know it is OK to feel angry and to express this, but try to help your child understand it is not OK to hurt themselves or others. Try to keep existing boundaries and routines in place, and this will provide some consistency and predictability at a time when many other aspects of your child’s life may be changing.

•F eeling ill (your child may complain of headache, stomach ache, feeling sick, finding it hard to breathe and may feel increased anxiety related to these symptoms) – it is not unusual for an emotional response to be combined with physical symptoms, but your child may be more fearful of these soon after someone has died. Acknowledge how they are feeling and treat any pain/illness as you usually would. Answer any questions or concerns they have calmly, and provide reassurance that feeling like this is normal and they will feel better soon.

If appropriate, try to distract your child from their symptoms for a while with an enjoyable activity to help them realise it is nothing serious.

• Restlessness (not being able to concentrate as they usually would, jumping from one activity or topic to another, needing to physically move more or keep active) – the emotional impact of a death may impact your child’s ability to organise their thoughts or actions. Try to accept their need to move between activities, as it again may be part of their way of coping with and making sense of the death. Gently provide opportunities for calming or soothing activities, but do not force these upon your child/young person.

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

7

• I solating or withdrawing (removing themselves to a quieter/private space, losing interest in previously enjoyed activities/toys) – It is OK for children/young people to choose to spend more time away from people following a bereavement as their tolerance levels may be reduced, they may feel confused by conversations and emotions around them, and they may want to have some control over their own environment and activity. If they have withdrawn to a separate room, check on them regularly, let them know you are close by, but allow them this time alone (if safe to do so). If you need to supervise them at all times, try making them a ‘cosy corner’ in a room, where they have their own space and won’t be disturbed by others. They should start to re-engage when they feel ready, but over time you may try to gently encourage this by gradually suggesting preferred or new activities.

• I mpact on sleep (difficulty falling asleep and/or night time waking) – it is usual for there to be an increase in thoughts and emotions at bedtime, and a child/young person with learning disabilities may be more upset at these times and need more comfort and reassurance. Try to keep the same bedtime routine and boundaries where possible but you may want to stay with your child until they fall asleep if they are very distressed initially.

Try to phase this extra support out as your child’s anxiety reduces and their confidence increases.

8

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

• Regression (acting as a younger child, losing previously learnt skills) - this may be due to the overwhelming emotional impact of the loss and changes in routine, and the effect this has on your child’s ability to organise their thoughts and focus on tasks. Or it may be an attempt to feel more secure, reduce stress and elicit a caring response from those around them. Try not to make your child/young person feel like they have to ‘grow up’ or take on more responsibility. Gently provide the care response your child seems to be looking for, as they may need this comfort to help them manage the grieving process. Be prepared to help your child with tasks they find challenging until their confidence and independent skills return.

• Searching – depending on your child’s developmental stage and understanding of death, they may try physically searching for the person who has died including looking round the house, or requesting to go to places they associate with that person. For some children and young people with learning disabilities it may be important for them to have the chance to ‘see for themselves’ that the person is no longer there; and whilst this may result in them feeling upset or frustrated, it may be a necessary part of the process to help them recognise the person has really gone.

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

9

What you can do to help

10

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

What you can do to help

•E xplain what has happened – you will need to keep your language simple, short, and literal e.g. “Nan has died, and that means we won’t see her again.

We are feeling sad and will miss Nan.” Ensure anyone spending time with your child/young person is aware of the bereavement and knows to use the same simple phrases if talking about it e.g. teachers could say, “We’re sorry to hear your Nan has died and you won’t see her again. That is very sad.” Make sure you don’t use any phrases that may be confusing or even scary e.g. ‘we’ve lost Nan’, ‘Nan will never wake up’, ‘Nan’s gone up to the sky,’ or ‘Nan passed away’.

If appropriate, you may want to tell your child there was nothing they could do, and make sure they do not blame themselves for what happened.

•R epeat and check their understanding – You may need to repeat the basic facts many times at different points. Try to check how much your child/young person understands. You can use books or examples in nature to aid their understanding e.g. compare live and dead insects or have fresh flowers and talk about them dying.

• Honesty – Be honest with your child/young person, giving them information that they can understand and is appropriate, depending on their developmental level. Allow them to ask questions and answer them as honestly as possible, at an appropriate level. You may be able to give more information as they get older or their communication and understanding develops. Again ensure others around them use the same language and responses.

•H elp them to express emotion – It is important children and young people know it is OK to express how they are feeling. They may often learn how to do this from watching those around them (at home, school, in the community and even on TV/Youtube etc.). It can be helpful to let them see that you or others are upset or crying. However, it may be best to try and keep high levels of emotion away from your child/young person if possible, as they may find this too overwhelming.

Try not to tell your child how you think they’re feeling in case this is confusing or isn’t entirely accurate. Try and let them explain/indicate their emotions in their own way, or ask them simple questions that may help you to understand their feelings.

Children and young people may express their emotion through play, art or messy activities. They may play at being dead or going to a funeral. This all helps them to process their emotions and develop their understanding of death.

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

11

• I nvolve your child where possible – involve your child in plans for funerals, visitors, a wake etc. if this is appropriate. They may be able to choose a colour for some of the flowers, a food to have available, or choose what they want to wear.

Make sure they are prepared for what will happen if they are able to attend part or all of the funeral, but try not to overwhelm them with too much information at once. Show photos of a church, cemetery or venue if they are going to attend, to help them know what to expect. Make sure there is someone who can take your child to a quiet area if necessary, if they become overwhelmed at some point during the service.

•T alk about the person who has died – find opportunities to talk about the person who has died and look at pictures or items that remind your child of them.

If your child does not seem to want to join in these activities, don’t force them.

Try again at a time when they may be more receptive, or introduce the conversation more gradually. Your child may only be able to focus on these activities for very short periods of time. For children/young people who are developmentally very young, or who only understand very concrete ideas, it may be difficult for them initially to hear you talk about the person who has died, without them expecting that person to appear. However if you combine these conversations with photos and memory items, over time your child’s expectations should adapt as they adjust to the bereavement.

12

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

13

Activities to help support a bereaved child with learning disabilities • Physical activity Physical activity, particularly outdoor activity, has been shown to support the expression of emotions and act as an escape from grief, creating a sense of freedom. It can help to protect children and young people from a range of mental health difficulties including anxiety and depression, and can raise young people’s self esteem.

Not only is the exercise hugely beneficial, but the change of scenery and chance to meet/watch other people can provide a great distraction from grief. Encourage your child to do any physical activity that they enjoy, for example:

• t rampolining, bouncing on a gym ball or space hopper (with support if needed);

• s wimming, extended bath times, water play outside, throwing water balloons;

•w alking (try a range of different areas; woodland, fields, beaches, proms, residential areas, and challenge your child to spot things as you go e.g. squirrel, flowers, post box etc.; • kicking/chasing a ball, popping bubbles, or playing chase; • horse riding, riding a bike or scooter; • visiting a park or soft play area.

14

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

• Messy play/art Again art/crafts activities can provide a temporary respite from grief. They allow children and young people with learning disabilities to express themselves without the need for words and can provide a great sense of achievement when they see their finished product. This can be reinforced with lots of praise and enthusiasm.

Art and messy play can also provide a range of sensory experiences that can soothe, distract or awaken your child depending on the activity. These activities can provide some physical exercise with large movements and even joint or muscle work depending on the activity. Try some of the following ideas:

• Large paintings on sheets of paper taped together, chalk marking on pavements, water painting on fences or dark walls;

• Finger painting, potato printing, using stamps or stencils;

• Play dough (homemade and edible, for those young people who will want to eat it);

• Baking - crispy cakes, cupcakes, or biscuits;

• Water play, sand play or uncooked rice/pasta dyed with food colouring;

• Shaving foam, foam soap or squirty cream designs.

• Draw pictures/display photos of other important people in their life Whilst it’s important to help your child/young person remember the person who has died, it will also be important to help them recognise the important people they still have around them, to help rebuild their sense of security. Have pictures of current family members on a wall or in a book that is easily available, and talk to your child/ young person about who they have in their life and how they all support them. This can be especially helpful for a child/young person who has lost a parent or primary carer from their life.

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

15

• Special toy to cuddle for comfort Following a bereavement, some children and young people with learning disabilities may benefit from having a special toy that they cuddle when they feel sad or unwell.

The cuddling activity can provide some deep pressure stimulation to the child which elicits a sensory soothing response. But do remember, if one particular toy becomes especially important to your child or young person, care will need to be taken that it doesn’t become lost or damaged, and after a while you may want to agree some boundaries about where the toy can go, to ensure it remains safe.

• Sensory box to sooth and distract Make a sensory box full of interesting and enjoyable items that your child can touch, smell, taste, hear, look at and fiddle with. These items should be different to the memory items relating to the person who died, as this box is to provide a range of different sensory inputs for your child to help soothe or distract them at times of distress. Let your child choose what goes in this box if they are able, and keep updating it, so the items are always interesting and enjoyable.

16

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

• Pets (or therapy animals) Spending time with well-behaved pets or animals can be a really enjoyable and relaxing activity for children and young people with learning disabilities as it provides sensory input and non-verbal interaction. However, this activity may not be appropriate for children who are fearful of animals and some children will need lots of support to ensure they are able to interact with the animals safely.

• Make a den/tent with blankets and cushions As well as being a fun activity that can give your child a sense of achievement, making a den can provide a safe place your child can go to if they feel overwhelmed.

Making the den cosy and calming will help your child develop their emotional regulation skills, and support them with reducing their sensory input during times of anxiety or stress.

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

17

• Spend time with friends Social interactions can help to temporarily alleviate some of the emotional discomfort associated with grief by providing distraction and enjoyable experiences. Some bereaved children and young people may withdraw from social activities and events for a while as they are trying to deal with their grief. This is a normal response and the child/young person’s wishes should always be considered. But even children and young people who prefer not to interact directly with others may benefit from a change of scenery and the opportunity to observe and listen to others. These activities may need to be very relaxed and brief initially, to build up your child’s confidence again.

• Make music Being able to make lots of noise can be a powerful way of expressing bottled up emotions. This does not have to be with proper instruments, or producing anything actually musical! Banging upside down pans with wooden spoons; blowing a kazoo, harmonica or recorder; or shaking a plastic container filled with pasta/rice can all provide interesting sounds. This can again provide sensory and physical activity that will also be beneficial to your child/young person, and may give them a sense of release.

18

Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

• Books or social stories Read books, tell stories or watch TV shows that introduce death at an appropriate level for your child. These do not have to be non-fiction, self-help books or documentaries; just any book/show that your child will enjoy that touches on the theme of life and death e.g. a pet dying, a new baby being born etc. Just try to ensure anything you share with your child is accurate and won’t confuse them further.

Finally, remember to balance any of the activities that focus on death with other activities that are more ‘fun-based’ to help your child recognise that the death doesn’t have to impact on all aspects of their life and they are still able to have fun. This will also help your child not to become too anxious or pre-occupied by death, but to start to accept it as a natural part of life.

There is more information available on the internet. Try to find the ideas that you think might best fit your child’s needs and abilities or adapt activities to suit your family. Here are some links you may find useful: www.nhs.uk/conditions/stress-anxiety-depression/children-and-

bereavement/ www.childbereavementuk.org/ www.mencap.org.uk/advice-and-support/dealing-bereavement www.autism.org.uk/advice-and-guidance/topics/mental-health/ bereavement/ www.winstonswish.org/ www.childhoodbereavementnetwork.org.uk/ Author: Jacqui Wood and illustrations by Chloe McNulty Children and Young People’s Learning Disability Service Wirral CAMHS - Bereavement Guide

19

Cheshire and Wirral Partnership NHS Foundation Trust Trust Headquarters Redesmere Countess of Chester Health Park Liverpool Road Chester, CH2 1BQ www.cwp.nhs.uk Tel: 01244 397397 @CWPNHS © Cheshire and Wirral Partnership NHS Foundation Trust 2021