Introduction … … … … 3
Understanding and explaining death … … 3
Children's reactions to death … … … 6
Helping our children to grieve … … … 8
Difficult feelings … … … … 12
Approaching adulthood … … … 13
Our child with a learning disability … … … 17
It is never too late … … … … 18
A child can live through anything so long as he or she is told the truth and is allowed to share with loved ones the natural feelings people have when they are suffering.
Eda Le Shan
This booklet is written by bereaved parents to help other parents understand and help their surviving children after the death of their brother or sister. We have consulted with SIBBS (Support In Bereavement for Brothers and Sisters), read books and articles written by bereaved siblings. Some of us have also lost a sibling earlier in our lives and, as parents now concerned for our surviving children, we try to understand what it feels like when a brother or sister dies. But it is important we remember that we are parents, grieving for our lost children, and our understanding can take us only so far. Parents often think they know and understand how their children are thinking and feeling, but perhaps we are better able to help them when we recognise our limitations. We want to protect our children from pain and suffering; we have experienced the death of one child, and it is unbearably painful to watch our other children suffer. But we cannot do their grieving for them; each person, however young, has to make their own journey.
Our best hope is that we can support them, have some understanding of where they are in their grieving, and be there for them when they need us. It is difficult to do this when we ourselves are undertaking the most anguished journey of our lives, but we try desperately hard to succeed because we love all our children.
There has probably never been a time when it was more difficult to explain death to children. They rarely meet it in real life in a recognisable form, and yet they receive so many mixed messages about it. Their friend says “My granny's gone to heaven”, they watch television news and see distant images of dead bodies in war-torn streets around the world, a cartoon character jumps up again after being shot in the head - just as their friend does after playing ‘bang-bang, you're dead'. Yet what does any of this have to do with the cot-death of their baby sister, or the road crash which made their brother disappear, and which has changed their parents into devastated, emotionally-absent shadows, making home feel a totally different place? It is confusing being a child at the best of times; in a family struggling to cope with the death of a child, it must be infinitely more difficult. If we are to help them at this time, we need to think about their understanding of death, to try to walk in their shoes. There are, however, some general principles which others have found useful and which are relevant to all ages.
We must be honest. We must try not to say anything which the child will later find out to have been untrue, for that would destroy trust. This does not mean, however, that we should overload them with too much information.
We need to talk , as far as possible, at the child's level of understanding, using words and concepts which are already familiar to them and which we think they understand. The younger they are, the more repetition they will need and this can be unbearably painful for us. But our children need this repetition because time concepts are very hard to grasp and suddenly we find ourselves needing to explain words like ‘never' and ‘always'.
We need to share our feelings , as well as our thoughts. We should not shield our children from our grief in the mistaken belief that it is bad for them to be upset. They know when adults are keeping secrets, shutting them out, and it makes them feel uneasy, afraid and insecure. Whatever the ages of our surviving children, they should be allowed to grieve with us, together, as a family, and that means being able to share our tears, to give each other hugs, to hold onto each other. If the parents cannot share their sorrow with their surviving children, those siblings will feel unable to share their feelings and so unable to talk to their parents about their brother or sister. Children also need the freedom to be with their friends, or alone with their thoughts and feelings, for at times they will need space and distance from their grieving parents.
We need to be able to say ‘I don't know' , and to be comfortable with what we do say; this is not a time for pretence, nor for suddenly introducing a whole new system of beliefs and words.
Children will hear varied and contradictory stories about death. It is most helpful if we can accept calmly whatever they say, so that it can be talked about and put into the context of family beliefs and attitudes. If we follow their lead, avoiding judgement and censure, we help them find a way through the morass, towards making sense of what has happened. We cannot do this for them, but we can be a support.
With these general principles in mind, what should we tell our children about death? Some of what follows may seem less relevant to older children, depending on how much experience they have already had of death, but it may help us to reflect on how much they do already know. There are sometimes surprising gaps.
Whatever the circumstances of our child's death, the key fact is that the body has ceased to be of use; it is not alive, breathing, feeling or moving, and it cannot be re-awakened. It is important to establish this so that a young child is not scared by the funeral, or by the subsequent burial or cremation. If he thinks his brother is in the box that is being burnt, he may worry about him hurting. Many of us have found that allowing even young children to see their dead brother or sister, to spend time with them, helps communicate this more completely than any number of words. The ‘real' person is not there any more. It is important to explain that they are not asleep, or a child may become afraid to go to sleep; sleeping people breathe, their hearts beat, they have dreams, they wake up, but the dead person's body has completely stopped working and they cannot wake up.
If the body is not the person, then where are they, and what is it like to be dead? This is one time when it is true to say “No-one knows exactly, because none of us has done it yet”. However, most of us have beliefs about life after death, the continuance of the soul or spirit, at least in the memory of those who loved them, and we will share these beliefs with our children. In their own time, they will work out their own thoughts about life after death. Books and poems can be a great help; as well as specifically spiritual or religious books, stories from nature (dragonflies, butterflies, etc) form the basis of many books which can help us return to these complex questions with our children in many different ways. We are all able to reassure our surviving children that we don't stop loving people when they die; they live in our memories and in our hearts, we talk about them with love and affection, we can remember the funny and naughty things as well as the sad ones. They are a continuing part of our family, and some thought and preparation need to be given to birthdays and anniversaries in the family, and to Christmas and other holiday times.
According to the age of the child, encourage them to take part in the discussion and decisions regarding their brother or sister's funeral, their room, clothes, and at anniversary times and on special occasions. Their views and participation will develop as they grow older, and they should not be excluded from this new and important (though very sad) aspect of family life.
Children, like adults, are individuals. We all go through a developmental journey from birth to death, but for each one of us the journey is unique. Nevertheless, there are common patterns to our progress, and it may be useful to look at how the stages of development influence the way in which our child copes with the death of a sister or brother. The ages are a guide only.
Babies and toddlers are deeply affected by their parents' emotions, and by the atmosphere in the home. We realise now that grief does affect babies in long-term ways, not just in practical matters such as disrupted breast feeding and different carers. Twins are especially affected by the loss of their ‘other half'. Young children do not have words yet for their feelings, but may show distress through weight loss, disturbed sleep patterns, crying for no obvious reason. We can help them by making sure they have lots of physical closeness, holding and cuddles even through our tears, accepting that they may need nursing to sleep or to share our bed for a while until our home has weathered the first impact of the tragedy. We should not think that any of our children are too young to be affected by our, and their, loss.
Children up to the age of about seven see the family as the centre of their world, and themselves as the centre of their family . Their understanding of time develops only slowly, and it is hard to explain the permanence of death. It is very painful for parents to have to go over and over the facts, to be asked repeatedly “When is Sally coming home?” and to know the same questions will be asked again at bedtime. Many young children think they can change things (this is sometimes called ‘magical thinking'); they may believe that if they are good then their dead sister will come back, or alternatively they may fear that their behaviour caused her death.
Play is essential in coming to understand what has happened; they may repeatedly act out the death with their toys, play at funerals, and make their friends play games in which killing and dying are central. This is not morbid, but simply a young child's way of trying to make sense of things they have seen and heard . Many children become fearful that they may die, or that their parents will suddenly disappear. We need to reassure them about many things, and to encourage them to talk about their fears; some of these may be quite unexpected, such as thinking that the hospital ‘killed' their brother. They may be misled by the often-used phrase ‘lost', and try to go off searching for their dead brother or sister, or become terrified at being ‘lost' themselves when out shopping.
We also need to accept that their attention span can be different from ours; it is distressing to have a five-year-old say “Can I go and play football now?” when you are two minutes into a talk with them about the funeral. Children are good at knowing how much they can bear, and they can cope better if we let ourselves be guided by their needs, not forcing our timetables on them. Their behaviour may regress, they may have sleep problems, fits of rage, become clinging and dependent or unexpectedly aggressive. However depleted our own resources, we need to be patient, to avoid punishment, and to accept that we all need more holding, closeness and loving in our shared grief.
Children of junior school age are increasingly able to grasp the permanence of death, though many of the reactions and thoughts described above will still apply to them. They may be deeply interested in the physical details of death and what happens to the body, including very specific questions about burial or cremation. They begin to have a personal viewpoint, that death is something that will one day happen to them, and to those they love; this can lead to a deep concern about the causes of death, such as old age and sickness. Despite this, death is often seen as a monster, an evil thing that snatches people away. Many of these disturbing thoughts may result in nightmares and fears which they may not be able to share with us, or even to understand themselves. Although they need reassurance, they may find it difficult to accept the loving attention of adults, and seem defensive, or even hostile when we try to help. Sometimes children find it easier to ‘mourn at a distance'; they may show little emotion at their brother or sister's death, but great empathy for characters in a book or television programme. Or they may react in what seems to us an irrational way over a lost toy or a favourite tee-shirt in the wash when they want to wear it. Most children benefit from a ‘listening ear' outside the family circle.
Older children and young adults have a more mature grasp of what is happening, but that does not necessarily make it easier for parents to help. Often siblings only feel at ease with their friends, but these friends may have had no experience themselves of bereavement. It is a time of conflicting emotions, of growth spurts, of imbalance in the hormones, as well as a time when they are beginning to grow away from their family and move towards adulthood. All these changes make them aware of life and death, as well as leading them to question the meaning of life in the light of their developing understanding. The death of a sister or brother at this time can be profoundly disturbing as well as full of pain. They may feel guilty for still being alive themselves, powerless in the face of their parents' grief and rage at their dead sibling for leaving them in this mess.
They may not feel they can share these thoughts within their family. Older children can become withdrawn, morose, negative, noisy or aggressive; school may be either a refuge or an impossible place to be. Their eating habits may be affected, leading worried parents to fear anorexia or bulimia. Surprisingly babyish, and sometimes unacceptable, behaviour may reappear, seemingly to aggravate us, but in reality a symptom of the turmoil raging within. Most feel a tremendous responsibility for their parents, that they must somehow become two people, replacing their brother or sister as well as being themselves. Others have great difficulty with the seeming idealisation of the dead child whose virtues are extolled and whose less attractive qualities are forgotten, just at the time when they themselves are aware of behaving in an unacceptable way which they can do nothing about. Some children feel they must look after their parents and protect them from further pain in any way. The roles of parent and child become almost reversed, with the ‘child' caring for the parent, giving emotional support. This can be at the expense of coping with their own grief, which is then suppressed, often causing difficulties later. Surviving siblings sometimes think they should have been the one to die.
Well-meaning family friends often compound these difficulties by saying ‘Be strong' or by not asking how they themselves are feeling, only ‘How is your Mum coping?'. The urge to scream ‘What about me ?' can be overwhelming! Good friends, with welcoming homes to visit, sympathetic teachers and other caring adults outside the family can be a lifeline at this time, when everyone in the immediate family is hurting so much, stretched to breaking point by the need to contain so much grief.
There is much that we can do to support our children, some of it quite simple and practical, once we are aware of their needs. The following things have helped other families to survive.
Shock leaves us feeling cold, chilled to the bone, and this is true for children as well as adults. Soft, warm clothes help to counteract this, and help them to feel enfolded, lovingly wrapped up, safe against harm. This is even more important at night, when extra warmth and softness (perhaps a blanket under the duvet) can, to some small extent, mitigate the cold and lonely feelings of loss, fear and grief. A warm drink, as well as a cuddle and a chat, are comforting after waking from a bad dream. A hot water bottle or wheat bag can be a help too.
Loneliness is a real problem for a bereaved child, especially if there were two children and now he or she is the only child. As parents, we have lost one of our children, but our child has lost all his or her siblings. This is made harder to bear if they shared a bedroom; to be expected suddenly to sleep in an empty room, with nobody in the other bed, may be more than we should expect them to cope with. If they were close in age, there may be many things which they did together; going into school, visiting granny, or even being in the garden are suddenly very different when your constant companion is no longer there to share them with you, even if you squabbled or fought. Sometimes a friend can help, but we must be careful not to seem to ‘fill the gap' in an insensitive way. Maybe it is our companionship that is needed, sharing and acknowledging the loneliness; often we do not say what is in our hearts for fear of upsetting our children, when it would help them to hear us put those feelings into words. There is a right time to say “It seems strange to see you there, watching television without Jo”, and to sit close together on the sofa, have a hug, and put off getting the tea for five minutes.
Night-time can be really hard. Bedtime routines may be different and bring feelings of isolation from other members of the family, fears of dark shadows and sounds, difficulty in getting to sleep with so many thoughts churning around. They may be afraid, too, of dreaming of their brother or sister, and perhaps of having nightmares. And for them, as for us, there are those awful moments when we first wake up and have to re-remember what has happened.
Sometimes, in well-meant attempts to protect our children from the worst of our grieving, we do a lot of our weeping and talking when we think they are asleep. But often they are awake, aware of what is going on, of visitors and unaccustomed noises, perhaps of angry voices which they cannot understand.
Practical things like a nightlight, some gentle music to listen to on a tape, leaving the door open or perhaps staying with them until they fall asleep - all these things will help, along with extra cuddles, hugs and reassuring words. We may also need to think about telling them what is happening this evening or tomorrow, whether people are coming, anything that prevents them from feeling that there are secrets going on downstairs from which they are excluded. Their fears and imaginings will almost always be worse for them than the reality.
However, we also need time to be alone with our partner, to weep together and be able to share thoughts; as always, it is so difficult to balance everybody's needs.
Regression to babyish ways is hard to cope with when life is so fraught. But it is a natural response to stress and will pass more quickly if we can manage to give our children the extra reassurance they need. We should try not to criticise them for habits they seemed to have outgrown.
Appetite and the need for food can be variable, but it is important that this does not become a battle-ground. Some children stop eating, feeling their throat close up with grief; others eat much more, as if trying to fill the emptiness in their lives. Making a meal together can serve several purposes; it is a good time to talk, and gives a hungry child a chance to nibble, or to look forward to sharing a meal with the rest of the family. Smaller plates and portions, and making simpler meals (perhaps with more fresh foods) can go some way to helping the ‘binge' eater without nagging; but we need to feed the emotional hunger too.
Sharing feelings is crucially important. We do not help our children to grieve if they never see us distressed and weeping; rather, they may wonder if we would shed no tears for them if they were dead. Children need our help to learn to express their grief if they are not to suffer more deeply with suppressed grief later on. We need to give them time to explore their thoughts with us so that we can try to help dispel any misconceptions. It is vital that our children know that it was not their fault that their brother or sister died; many young children think their thoughts are powerful, and can make things happen. They may have felt jealous and angry at the attention their sister or brother received while they were ill, or have wished that the baby would shut up and stop crying. They need our reassurance to help allay their feelings of guilt, remorse and anxiety, and to know that they will not make us feel worse by sharing their grief with us. We need to remember, too, that parents generally have a partner to talk to, but a sibling will often feel they have no-one willing to listen who will understand.
Play is a way for children to express their feelings and test out ideas. Playgroup and school give them a chance to do this with other children, and to keep in touch with the world of normal, non-grieving people. Listening to them playing at home can give us valuable clues to their thoughts and fears; talking to their teacher can ensure we are both aware of what the children are expressing, verbally and through play. Sometimes children can express their thoughts and feelings through drawing, painting, clay or even plasticene when they cannot find the words they need. Violent, dark emotions can feel more manageable if they have been freely expressed without any need to explain them.
Rest and quiet times are important too. All bereaved parents know at first hand how exhausting grief is, and how much we need time to recover our strength. It is the same for our children. Having a sleeping-bag and pillow downstairs can encourage a child to take a short rest.
Books are another way to explore ideas and share thoughts and feelings. They can help us with the need for repetition which many of us find so painful. We can also enlist the help of other people around us; reading a story may be easier for some people than talking to a grieving child. We may need to stop frequently and talk about what we have read.
Doing, making or creating something can be another way of grieving. Some families make a memory book together, which can be a lasting treasure shared with future generations as well as a source of present comfort, a trigger for recollections and healing grief. Other activities can be instant; for a child locked into silence, putting expressions into a page of blank faces can bring relief. Drawing, painting, even scribbling can give parents valuable clues about their child's inner world.
We want to provide opportunities for our children to express their grief, but we also need to understand that they will do this in their own time and place, not necessarily in ours, and should not add to the pressures upon them by what is perhaps our need.
Talking to teachers and keeping them in touch with what is happening in the family is a way of getting the necessary support for your child at school, where they spend a large part of their waking time. Grief is a long journey, and this contact may need to be made afresh as your child moves from class to class. Your son or daughter's school may find the TCF leaflet When a child in your school is bereaved helpful in responding to their needs.
Treats and outings should not be forgotten. We all need respite from our grief and quite simple treats, like football in the park or a drink in a café, can lighten the day for a grieving child. They cannot be sad all the time. This is something which friends can help you with, though the need to go out as a family is important too.
We all find some feelings more difficult to deal with than others, and children are the same. We also find some of our children's emotions harder to cope with than others. There is a danger that we will encourage our children to bottle up the ones we find hardest to deal with, when these may be the very ones they need to release.
Anger is a powerful feeling, often frightening in its destructive force and its potential for violence. Children can frighten themselves with the ferocity of their own anger and sometimes feel that something dreadful may happen if they let it out. Parents often teach children, even unintentionally, that anger is bad; we punish them for tantrums and destructive behaviour, telling them to control themselves and expecting them not to shout and scream, even when we shout at them in anger! But anger is a part of grief and loss, and needs both recognition and safe ways of expression.
A child usually feels anger as a surge of energy, expressed through the mouth (in biting, screaming, swearing, spitting), through the hands (in punching, pulling, breaking, scratching) or through the feet (in kicking, stamping, running away). We can help them to release this build-up of tension in a manageable way: kicking a ball is better than kicking your sister, thumping a cushion or hammering at a piece of wood or tearing up cardboard boxes limits the destruction; running in the park is safer than setting off through the traffic. To help our children, we have to acknowledge their rage, and encourage them to express their anger in safe ways. Nevertheless, it is a hard thing to do, especially in the midst of our own grief. Some older children worry us terribly with more destructive behaviour such as truancy, vandalism, alcohol and drug abuse. We feel powerless to help them, yet feel they are risking long-term damage to themselves. It is hard to keep channels of communication open, to tell them you understand their pain, and are there for them, when they seem bent on self-destruction.
Guilt is another difficult emotion to deal with, and one which it is easy to deny. Within our grief, guilt can take many forms. As families we often feel we should have been able to prevent the death; hindsight can be very cruel and can make us blame ourselves in quite unreasonable, irrational ways. Siblings, as well as parents, need a trusted friend who can bear to listen to our guilt without trying to tell us ‘You shouldn't feel like that'. We need time to explore these very real feelings so that we can, eventually, come to a more balanced view. Children as well as parents and grandparents can also suffer from ‘survivor guilt', the feeling that they should not be alive when their brother or sister is dead, or that they should have died in their place. Sometimes the survivor has had a difficult relationship with the child who has died, or a quarrel where things were said which can never be resolved now that death has intervened. These thoughts can sometimes cause symptoms which puzzle everyone, such as aches and pains, confusion, inability to concentrate, accident proneness, even difficulties with sight and hearing. Other children try to ease the tension within themselves through rude, unco-operative or aggressive behaviour, by opting out of family life or truanting from school. Some experiment with drugs or alcohol to ease the pain. Children whose behaviour changes dramatically following a bereavement need help and support, not criticism, telling-off or punishment. If family and friends cannot reach them and there is not a trusted adult who is acceptable to them, then professional help may be needed. If you feel (for this or any other reason) that you need professional help, it is advisable to see a recommended practitioner. Advice can be obtained from your GP, religious leader or the Social Services Department
Forgiveness is a healing emotion. Just as younger children need to understand that their actions could not have killed their brother or sister, so older children need to see that, while we may regret harsh words or things left unresolved, we do not need to feel burdened by them. There are various ways of saying sorry symbolically. As well as talking, writing letters and drawing pictures can be useful ways of getting the feelings ‘out'; they can then be ‘let go', by tying them to balloons, floating them away on water, burning them, by burying them in the ground, anything that feels right. Children also need to find a way of forgiving, or asking forgiveness from, their dead sister or brother for hurtful things said or done in the past but which still cause pain.
This is a complex, sometimes traumatic, time for all our children, even without the death of a brother or sister. They experiment with new identities and begin to see themselves not just as a child within a loving family, but as an independent adult moving out into the world. They are subjected to huge pressure on all sides. The media present them with a vast array of role models; commercial interests compete for their attention, and those selling addictive substances target our children as new and vulnerable customers. They are encouraged to experiment with the trappings of adulthood at an ever younger age, often long before they are ready to take on the emotional implications of such things. As parents we find ourselves sidelined, watching but unable to help. This is especially painful when we are grieving for our dead child and desperately want to protect our surviving children from harm. They are missing their brother or sister who may well have been a big part of their life; there is now a void in their lives, as there is in ours.
Friends and others of their own age are increasingly important in their lives. There is an urgent need to conform, to wear the latest fashion, listen to the latest music, to know what is going on. And these trends move fast. Grieving children may suddenly find themselves left behind and out of touch, isolated by their loss in a double sense. They may find their friends' preoccupations unbearably trivial, yet worry that they will lose their friends. Some are lucky and receive invaluable support from their friends at this time; they find them a refuge from the agony of grief at home, the safe place they need to be able to be themselves, not just ‘the surviving child' within the family, and a relief from the burden of trying to support their parents. Others find that their friends cannot help them, that death and grief are outside their experience; grief can seem like a contagious disease, best avoided lest they catch it too. The experiences of boys and girls are often different, with boys finding it harder perhaps to put their sympathy into words and uncomfortable with tears; however, they may offer support in other, equally helpful, ways and we should be wary of sweeping generalisations .
Communication within the family can become a minefield, where every well-meant remark is a disaster. Sometimes there is harsh and bitter conflict between parents. Rows and angry exchanges can be frightening to younger children, and deeply disturbing to older members of the family. They may trigger their own destructive but unacknowledged rage at the damage already done to their family and to them personally. It may seem as if the entire family is on the slippery slope to destruction.
Talking about the situation can help. We may need to reassure our children that they are loved, even though the relationship between their parents may be under threat. We may be able to explain that, though we row and shout, we do still love each other; that it is our deep grief, and our different ways of expressing it, that causes us to row and shout, making it harder at the moment, but we hope that this will pass.
While we want to avoid becoming over-protective of our remaining children, it may be necessary to explain to them that our feelings need to be taken into account, telling them how much we care and worry about their welfare, asking them to let us know where they are going and when they will be coming back. At the same time, we don't want to make them feel guilty about us worrying over them all the time.
Parents and older children who are not suffering from a bereavement often find it hard to talk to each other, with children retreating into silence, or endless phone calls to friends, or listening to music to block out conversation. Bereavement can make this worse - or sometimes better. There is much to decide, to plan and to do; we need to include all our children in these decisions and to give proper consideration to their feelings. We often recognise only much later how our children struggled to protect us, how they sometimes took on parental roles themselves, and perhaps put their own grief ‘on hold' in their efforts to spare us pain. It can be enormously helpful for an older child to have an adult friend outside the immediate family with whom they can talk, someone whose focus will be on them and their feelings, rather than on the family and their parents. Talking to another bereaved sibling can be a great help and support. We can try to make this happen, perhaps by talking to a likely person, but it is our child who needs to feel comfortable with the relationship if it is to be of real benefit. When it works, it can be a great help to both child and parents.
The SIBBS newsletter and network can be a great support to our children at any time in their grief journey, not only immediately after the death. Contact can be made through the TCF Office in Bristol; by post at SIBBS, PO Box 1246, Bristol BS99 2UH; or by e-mail at sibbs@tcf.org.uk.
The pressure of exams and other life choices can be acute at this time. Concentration may suffer badly and expectations may have to be changed, at least in the short-term, to allow a child time to grieve and begin to recover from the trauma of losing a brother or sister. Encouragement and understanding are necessary, together with helpful suggestions; a deferred examination may be a better outcome than a failed one. Our children may not realise how their grief is affecting them, and their confidence and self-esteem may suffer badly; schools want pupils to do well, and can sometimes fail to see that the pupil is not being lazy, that he or she is genuinely incapacitated by grief, just as they would be by glandular fever.
Acceptable boundaries of behaviour are hard to establish in a grief-stricken household. There are no easy routes. We may say that discussion and consensus usually work better than ‘rules' rigidly enforced, or that children benefit from clear boundaries and sanctions. Yet this does not take into account the emotional exhaustion that exists within a bereaved family, where we as parents struggle to get through the days and cannot tolerate our older children behaving worse than ever, even though we know that it is happening, at least in part, because of their pain. As parents, we need friends where we can off-load our frustrations, defuse the tension within us - and maybe between us - so that we can continue to cope. Our children need places outside the family where they can do the same thing. We need to try and avoid destructive, irretrievable conversations which lead us into ever deeper conflict and may result in permanent rifts within our already wounded family.
Sometimes we have to be careful what we say to, or in front of, our children, that we do not cause additional grief and worry by saying things we might have said differently if we had taken a moment to think of the effect our words on our grieving children.
The meaning of life and the fundamental question “Who am I?” are important preoccupations for our children as they become adults. They need to begin to sort out their own way of interpreting a confusing world. The death of their brother or sister does not fit within the framework of normal expectations. Fear and confusion can arise, and a sense of futility. The world suddenly seems a fragile place. Loving support from family and friends will help, but the sense of insecurity can be deep and real.
Leaving home can be especially difficult in the aftermath of a bereavement. Parents may find it doubly hard to let go, having already lost one child, and our children may worry about us being alone. Nevertheless, life does move on and our children need to feel free to go to college, take a job away from home, begin new relationships. Our fears can be eased by talking about how we will keep in touch, and by acknowledging our feelings and sharing them.
Sometimes within families, silences develop over time, even when we have been able to share thoughts and memories in the immediate aftermath of our loss. It takes both courage and sensitivity to open up these matters. Some people contact either TCF or SIBBS many years after the death of their child or sibling, because they now want to share their loss with others who will understand.
Our child with a learning disability
If one of our surviving children has a learning disability we may have a life-long instinct to protect them from the harshest things in life. But when their brother or sister dies, we may have to overcome this instinct and make sure they are included fully in the emotions, experiences and grief of our family; we cannot reassure them that everything is all right, because it is not. We know our child, and the level of words to use, how we communicate feelings and share our thoughts; everything in this leaflet is relevant, at some time, to the situation we find ourselves in. The worst thing for them is to feel excluded, shut out, to have a dark and formless fear that something terrible has happened, but everyone is trying to pretend that all is well. Grief is such a powerful emotion that it cannot be hidden from those we love, even if their powers of understanding are limited. We need to hold, to comfort, to weep and not to be afraid of upsetting each other.
Our child may not have the language to make communication simple; we may need to tell them many times what has happened, to use photos and objects to give substance to memory. If they are not living at home, we need to make sure that their carers know what has happened and are prepared to help our child at this difficult time. Grief can change the behaviour of us all, and when emotions are not readily put into words, then other ways are used to express them. Our child may become angry and aggressive, or clinging and insecure; they may turn to self-harm or other destructive behaviour to release their inner turmoil; they may become withdrawn and silent. They may lose their appetite, or seek comfort in food. Everyone who cares for them needs to realise that difficult as their behaviour may be, it is loss and grief that are causing it, and they need our support and love to help them through. It can be tempting to avoid speaking of the bereavement, not wanting to upset them further, but this can lead to a sense of unreality, and it is better to talk about what has happened, to mention their dead brother or sister, to look at a photo and say how we miss them, to remember the funny things about them and how we loved them. And we need to show our love for each other in whatever ways are best understood. Sometimes grief is interpreted as anger or rejection, and our surviving child worries that we do not love them any more, because we always seem to be sad or cross. Or they may worry because their dead brother or sister does not visit them any more; we have to explain that they cannot come, to acknowledge that this is very sad, but to go on talking about them, keeping them alive in our hearts and memories as best we can.
For us, having a child with any kind of disability is itself a type of bereavement and the emotions of dealing with that will be rekindled by any new bereavement. Disabled children can be, indeed are, very special, but they can also be infuriating. We may need to relearn the lessons of not being frustrated with them.
Helpful materials and further information are available from the British Institute of Learning Disabilities (BILD), Publications Section, Frankfurt Lodge, Clevedon Hall, Victoria Road, Clevedon, BS21 7SJ (telephone 01275 876 096). Books and leaflets are also available from the TCF Postal Library ).
It is never too late for parents and children to help each other with the burdens of grief, or to seek help for our children. We continue to mourn our dead child for the rest of our lives and the same is true for our surviving children. It is important that we can continue to talk, that there is not a black hole of silence within our family. Many of us feel profound concern that we did not do all we could to help our children, that we were too disabled by our own grief to see and respond to their needs. We may have put our dead child ‘on a pedestal' and then seen them as perfect, inadvertently diminishing our surviving children.
We need to be kind to ourselves, to recognise that we did the best we could at the time, and to keep open the channels of communication between us and our children, even if it is many years since our child died. It is never too late to say “I'm sorry, I didn't understand” for things which happened in the past. For younger children, this sharing is important as they develop in understanding; we can explain and discuss why things happened, have a chance to correct deep misunderstandings or gaps in their factual knowledge of the events. Healing is a lifelong process and we bear scars for ever, but perhaps our goal is that we can look back on that time and be able to say ‘we have survived'.
Further information may be obtained from:
The Compassionate Friends
53 North Street, Bristol BS3 1EN
Office Tel:0845 120 3785 Fax: 0845 120 3786
Helpline Tel: 0845 1 23 23 04
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