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Bereaved children: We need to talk about death

Sir Al Aynsley-Green knows how it feels to lose a parent at a young age – and now he wants to help other bereaved children. By Amol Rajan

Sir Al Aynsley-Green: "I've always been extremely conscious of the impact on the parents -  and also on the siblings."

David Sandison

Sir Al Aynsley-Green: "I've always been extremely conscious of the impact on the parents - and also on the siblings."

Not many people know that every half an hour a child in Britain loses a parent. Fewer still know that the rate at which British children lose either a grandparent, close school friend, or mentor is higher still. Our ignorance of these alarming figures is partly due to the fact that no official statistics exist for the number of young people experiencing the trauma of bereavement. The above figures are simply the conservative estimates produced by an organisation known as the Childhood Bereavement Network.

And yet the severity of the problem is beyond dispute. Bereavement means "to leave desolate or alone, especially by death". It is distinguished from grief, which means any form of deep mental anguish, by its emphasis on the solitude of those who endure it. And to a much greater extent than adults, children struggle to cope with the toxic combination of sorrow and solitude.

When married to the frequency of childhood bereavement, this presents something akin to a national disaster. It is one that the man tasked with representing children's interests to government – and we're certainly not talking about Ed Balls, the Schools Secretary here – is beginning to take seriously.

It is a curious fact that, almost immediately upon becoming the first independent Children's Commissioner in England four years ago, Sir Al Aynsley-Green set about renaming the position to which he had ascended. The Children's Commission, which he led, an off-shoot of the 2004 Children Act, had a title unbecoming of an institution whose raison d'etre was listening to children, showing them empathy, and conveying their needs to the summit of British democracy. So the Children's Commission, a name that connotes Stalin's purges, became 11 Million, which suggests warm inclusivity (there are 11 million children in Britain). Sir Al remains the Children's Commissioner.

In riverside offices next to London Bridge, whose pastel colours and overflowing children's toys evoke the sense of a kindergarten, Sir Al has invited this newspaper in for coffee to talk about bereavement. Given his stern visage, all square jaw and spectacles, on entering his office it's difficult not to feel like a guilty pupil reporting for the head master's summons. But knowledge of his distinguished previous career, in which three-and-a-half decades as a children's doctor culminated in exalted status at Great Ormond Street hospital, works as a palliative of sorts. And when he starts talking about bereaved children, the depth of his commitment to their welfare is both tangible and poignant.

"In my clinical work I've met countless families who've lost a baby or a child through illness or trauma or whatever it may be," he says. "Just working with those families and often being responsible for the management of the child that died, I've always been extremely conscious of the impact on the parents – and also on the siblings."

His "professional experience of working with very sick babies and children and seeing the impact, what happens when a child dies", is, he says, ample qualification for a new drive to improve services for children who are bereaved. But there is a second facet to his fitness for the role, the one that draws poignancy. "I can relate to these children very closely," Sir Al says, "because I was a bereaved child when my dad died unexpectedly when I was 10. I won't go into the personal circumstances but he died unexpectedly when I was 10 and the impact on me, looking back on it, was very considerable indeed".

The unforeseen tragedy was, in fact, what caused Sir Al to become a doctor. "I have come to understand the real impact as I've grown older, and I think probably a lot of the reactions I had have been sublimated or repressed in my thinking," he says. "There was one very important consequence of that bereavement, which is that I decided at the age of 10 I wanted to be a doctor. It changed my whole way of thinking as a child: I wanted to stop other people dying. It was a very child-like and childish feeling, but it certainly transformed my life."

Sir Al seems, as he vocalises his experience, to still be coming to terms with its magnitude. The repression he mentions is only vaguely palpable, so it seems sensible to ask what emotions exactly he was going through back then. "Confusion, anger, dismay. It's difficult now there's so much distance. Talking to children who've been recently bereaved, they may be very confused, they may be very angry" – his rising cadence as he says this suggests some of it may be autobiographical – "they may feel very guilty, that they are somehow responsible for the death. They may be very tearful. They may not want to show it because they see adults who are obviously experiencing grief. There are all sorts of ways children may respond: grief is a very personal reaction, so it'll impact on their emotional health, on their physical health, it'll impact on their school ability and it may have very long-term implications."

All doctors think about death more than lay people, because they are forced, far more than most, to confront its constant possibility. Sir Al has strong views on the censorship of discussion of death, which he feels is an impediment not only to our understanding and preparation for it, but also to helping those for whom death has become a big part of life.

"I think it's a taboo subject in our society. Death is something we don't like talking about," he says. "That's in stark contrast to the situation in this country 150 years ago. In Victorian times death was everywhere. Parents often expected many of their children to die and of course diseases that have disappeared now carried off countless thousands of people. So death was part of life. Now we really don't expect people to die. In medicine we try very hard to keep everyone alive."

This, clearly, is a laudable aim. But for those people, and children especially, who are forced to confront mortality, "death comes in all sorts of ways – expected and unexpected". To this end, Sir Al says he is planning to make bereavement a new pillar of the 11 Million remit. He will work with voluntary organisations including Winston's Wish, Cruse, and Jigsaw4U – all charities devoted to helping children cope with bereavement – to raise awareness of the issues and, to the extent that he can, help channel funds towards an under-nourished cause. "These voluntary organisations are trying very hard to give a first-rate service," Sir Al says, "but it's part of the problem that some kids don't have a clue they exist."

One of the triggers for his recently renewed interest was a documentary he'd seen about Winston's Wish, which focused on the weekend residential programs they run for children who have suffered loss. "One of the final clips was the sight of children where each one was given a helium balloon, and they were invited to write a message on the balloon to their loved one," he says, clearly moved by the recollection. "And they all released these balloons, and they disappeared as tiny specks in the sky, and that had a huge impact on me because when my father died I had not been allowed to see his body, I had not been allowed to talk about it, I was surrounded by adults who were obviously grieving and distressed and so on, and, in their kindness to me I think, they were trying to protect me. But the consequence was I really had a very unfortunate experience."

It's a testament to him that, five-and-a-half decades on from that trauma, his work is doing much to relieve other children of a similar fate.

Learning to grieve: How children deal with loss

* Children's response to death depends very much on their developmental stage. Up to the age of five, children view death as non-permanent and reversible, a product of "magical thinking" in which the person might come back.

* Children need to be given an honest, age-appropriate understanding of the circumstances of the death or separation to prevent them inventing things to fill the gaps, or even believing that they were in some way responsible. Even if these thoughts are not openly expressed, the child should be given lots of reassurance that they were in no way responsible.

* Despite reassurance, many children have serious misgivings about what may happen to them or others in the family, and they need to have these fears listened to and addressed.

* Children are more able to deal with stressful situations if they are given the truth and the support to deal with it. Parents should not use euphemisms to avoid the truth.

* Children and young adults in ambiguous situations take their cues for appropriate behaviour from adults and every effort should be made to demonstrate how to adapt to loss by sharing your own thoughts, experiences and memories.

By Paul Bingham, an independent chartered psychologist, practising in Northamptonshire

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Comments

children's experience of death and dying
[info]nannypanny1 wrote:
Tuesday, 9 June 2009 at 08:51 am (UTC)
I found this article to be inspirational. I am a trained counsellor widowed 4 years ago and frankly lost as to where I fit into this new world which death has created for me. I also have an Early Years qualification and was looking for direction in my career. I was moved and humbled by Sir Al's insight and obvious devotion to the well being of children. I was aware of the huge gap in bereavement welfare for school children as my own grandson received little in the way of counsellling or understanding when his grandfather died very suddenly. He was devoted to my husband and was totally shattered when he died. I do not think it a coincidence that he started misbehaving at school and at home in the years that followed, I think he had a great deal of suppressed anger which had to manifest itself in some way. Thanks for the inspiration and best wishes to Sir Al and his team.
Loss at very early age - without personal memories
[info]stewartpa wrote:
Tuesday, 9 June 2009 at 09:55 am (UTC)
I was 15 moths old when my Dad died (I am now 61) so I had no memories other than occasional references to what he was like. I wasn't really aware of not having a father during my childhood and it was a very happy period. However, in my early thirties it suddenly hit home (we had successfully brought up our two teenage sons). I went slightly off the rails, and now cannot think of my 'loss' without tears coming to my eyes. I know I will be like this for the rest of my life and I do not fully understand why other than the obvious. I have used this emotion as a positive driver for my life (I've always been positive and optimistic). I'm do not have a conclusion but just wanted briefly to share part of my own story.
There are many effects of childhood bereavement
[info]sickofstupidity wrote:
Tuesday, 9 June 2009 at 04:05 pm (UTC)
There are many effects of childhood bereavement.

My mother died very suddenly when I was nine, of a heart attack.

The timing was particularly cruel, as it was the first day of a family summer holiday by the coast - previously times of happiness, excitement and good memories. I look back on that day as the moment my life changed forever. I lost my childhood innocence, and with it a lot of the spontaneous, carefree joyfulness once associates with children. I became withdrawn and solitary, and prone to feelings of neurotic anxiety and insecurity. I developed an instinctive pessimism and negativity towards life - a feeling that nothing good ever lasts, that any happiness is only fleeting, and that I should therefore avoid allowing myself to feel too happy, too content or too comfortable in any situation, because I always had to be emotionally prepared for sudden disappointment, for the cruel let-down at the end.

I became numb and emotionally detached over the following years, to the extent that when, after a long and painful decline due to a heart condition, my father died when I was fifteen (the second time my life suddenly and dramatically changed direction, as I was then technically an 'orphan'), I didn't shed a single tear. I had already prepared for it; I knew it was coming, and had rehearsed it over and over in my head, so that when it finally happened, I was incapable of reacting with spontaneous grief at the news, but merely with a philosophical shrug of the shoulders and resigned nod of the head.

Those are some of the emotional effects of childhood bereavement - loss of innocence, deadening of spontaneity, pervasive feelings of anxiety, insecurity and pessimism, and emotional numbing.

(cont)
There are many effects of childhood bereavement
[info]sickofstupidity wrote:
Tuesday, 9 June 2009 at 04:05 pm (UTC)
(cont)

But there are other more subtle, and perhaps less discussed, effects.

One's parents are a connection with one's past, with one's childhood. While they are alive, they can recount the experiences you shared with them, and remind you, with amusing - and sometimes no doubt embarrassing - anecdotes, of the funny, mischievous or downright naughty things you got up to, and the things that happened to you, good or bad, especially when you were too young to have formed strong memories of them for yourself. When your parents are gone, that connection with your past is lost, and huge swathes of your childhood along with it. It is as if the diary of your childhood had been burned in a house fire, and only a few legible scraps of it could be salvaged from the ashes. Your childhood becomes like a foreign country, visited once long ago, a place that you can only dimly remember, and can never visit again.

This feeling of disconnection from one's past, and of having little memory of it, is doubly painful for those bereaved in childhood. Because it is likely that the strongest memories that such people retain of their childhood are also the saddest and most painful ones - namely, the death of their parent(s). And such memories can often seem to mark the end of that childhood, and so the person is left with a desperate yearning to know, to really believe, that they actually *had* a childhood, and that it had - hopefully - been a *happy* childhood (or at least a 'normal' one), before it came to a sudden, tragic end. (Speaking for myself, I have often toyed with the idea of undergoing some sort of hypnotic regression therapy to recover a few memories of my pre-bereavement childhood, to re-experience the happy, carefree innocence of it, and thereby - hopefully - to discover a more balanced perspective, and a realization that there was more that can, and should, be remembered about it than the way that it ended.)

(cont)
There are many effects of childhood bereavement
[info]sickofstupidity wrote:
Tuesday, 9 June 2009 at 04:06 pm (UTC)
(cont)

A related effect of childhood bereavement can be that not only does one lose memories of one's pre-bereavement childhood, but also of one's parents, to the extent that, as the years pass, they become more and more like strangers, as if one never really knew much about them, or shared much life with them. I know, for instance, that I screamed and bawled my head off for hours the night my mother died, but, looking back to that now distant event, I honestly cannot remember *why*. That might sound shocking, even callous, but it's a fact; for me to understand why I was so upset, I would need to re-experience the feeling of loss, and to do that I would need to remember what it was like to love, and be loved by, my mother. But I have so few memories of my mother, all these years later (and partly due to the aforementioned loss of pre-bereavement childhood memories), that I cannot recover those feelings, even though I know I must have had them at the time. So, looking back now, it is as if I was crying my eyes out over the death of a virtual stranger.

My memories of my father are a little clearer, if only because he survived my mother by another six years, into my teens. However, most of the memories I have of my him are not happy ones; because of his decline into ill-health after my mother's death, my strongest memories are of his numerous health-scares, of phoning for ambulances in the middle of the night, of visiting him in hospital, of his periods of convalescence at home, and then his inevitable return to hospital a few months later - a pattern which continued up to his eventual death.

(cont)
There are many effects of childhood bereavement
[info]sickofstupidity wrote:
Tuesday, 9 June 2009 at 04:06 pm (UTC)
(cont)

So it is fair to say that I can remember almost nothing of my mother, and many of the memories I have of my father I would rather forget, which actually doesn't leave very much. Summarising all this, the memory-timeline of my early years looks something like this:

Almost nothing->Mother's death->Father's illness->Father's death->'Adulthood' (at 15).

In other words, the first fifteen years of my life are something of a black void in terms of memorable events, except for the death of two people I feel I hardly ever knew (one after a prolonged illness).

To conclude then, the effects of my childhood bereavement were basically threefold; it made me emotionally withdrawn, anxious and neurotic (at least in my early adulthood); it effectively erased most of the memories of my pre-bereavement childhood, so that I feel almost as if I never had one; and it erased most of the memories of my parents, and my relationship with them, so that they now seem like strangers to me.

I don't know to what extent others bereaved in childhood would report similar feelings, but I suspect mine are not untypical.

(cont)
There are many effects of childhood bereavement
[info]sickofstupidity wrote:
Tuesday, 9 June 2009 at 04:06 pm (UTC)
(cont)

How can bereaved children - and adults - learn to deal with these things?

One thing that helped me in my teenage years was that, on the recommendation of my year tutor at school, I took up TM (transcendental meditation) after my father's death, to help me cope with my feelings of stress, insecurity and anxiety. This was definitely beneficial; it gave me a realization that there were reserves of emotional strength on which I could draw in moments of stress, and that there was a place of calm, peaceful tranquility and reflection within me, into which I could temporarily withdraw and recover my mental equilibrium if the chaos of my external world threatened to overwhelm me. I would heartily recommend TM, or a similar meditative practice (though I believe TM to be the most effective), to bereaved children and young adults for this reason.

In later life, I had a year of psychotherapy, which enabled me to examine my feelings, to view the events of my past from a clearer perspective, and talk about them openly - to 'get things off my chest', if you like. This too was highly beneficial, and it is one reason I am able to write about these things here, in fact.

And I have also tried various 'self-help' psychology techniques, such as CBT (Cognitive Behavioural Therapy) and NLP (Neurolinguistic Programming) to help me overcome some of the negative beliefs and limiting behaviours (.e.g. being pathologically cautious and risk-averse) that were instilled in me as a result of my childhood experiences, and which held me back from achieving happiness and success in life. These techniques can be highly effective, though it is necessary to first overcome one's cynicism and believe that they *can* be effective, or they will not be.

(cont)
There are many effects of childhood bereavement
[info]sickofstupidity wrote:
Tuesday, 9 June 2009 at 04:07 pm (UTC)
(cont)

But I don't think that one can ever *completely* overcome the loss of a parent (or both) in childhood. There will always be hidden scars, and empty holes in one's life, and one's memories. One simply learns to come to terms with it, to learn coping strategies, to understand the effects of that loss, and how to compensate for, or adapt to them.

And if there is one good thing that can come from childhood bereavement, it is that it can - if its effects are dealt with in a timely and effective manner - make one a more emotionally sympathetic and empathic person (I am known amongst my friends as being a 'good listener' and someone they can talk to about their troubles), and emotionally strengthen one - albeit prematurely - to deal with the adversities and traumas of adult life. As the saying goes - what doesn't kill you makes you stronger.
Article
[info]alister61 wrote:
Thursday, 22 October 2009 at 02:13 pm (UTC)
Sir Al Aynsley-Green has just been here in Perth Westrn Australia at our Childrens Hospital and what an inspiring man. We were all very pleased to have the opportunity to listen I just wished that our management had opened it up to all nursing staff. Fantastic


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