Video – What are continuing bonds and how can they be used to help bereaved parents through the grieving process?

Bereaved Parents and their Continuing BondsIn this video Catherine Seigal talks to Sue Nuttall about her book Bereaved Parents and their Continuing Bonds. For bereaved parents the development of a continuing bond with the child who has died is a key element in their grieving and in how they manage the future. Using her experience of working in a children’s hospital as a counsellor with bereaved parents, the author looks at how continuing bonds are formed, what facilitates and sustains them and what can undermine them. Using the words and experiences of bereaved parents, and drawing on current theories of continuing bonds, this book offers insight into the many and varied ways grief is experienced and expressed and what is helpful and unhelpful. It is an original and valuable guide for both professionals and parents.

Watch the video on our YouTube channel.

Bereaved Parents and their Continuing Bonds: Love After Death by Catherine Seigal is out now. Order your copy from www.jkp.com.

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Strategies in Supporting Children with Special Needs around Death and Dying

“My grandma isn’t a dinosaur. Why are the dinosaurs in this book teaching about death?”

“My dad’s not a leaf. I don’t understand what falling leaves have to do with him dying.”

“My aunt died. Why is everyone saying she’s in a better place?”

Metaphors, symbolic language, euphemisms. These all present challenges for many children with special needs who process information in a concrete manner. The quotes above encapsulate some of the feedback we have heard during our work in hospice care and in special education, as parents describe their struggle with explaining death and dying to their children. We wrote I Have a Question about Death: A Book for Children with Autism Spectrum Disorder or Other Special Needs to address these challenges, and to create a book that parents and caregivers can read with all children.

Complicated subjects like death and dying can be particularly daunting to discuss with children, and even more so when those children have special learning needs; there is often no easy answer to difficult questions. The following strategies provide guidance on supporting a child with special needs around death and dying. Remember, every child processes information in a unique manner; consider which approach will work best for the children in your life based on strategies that have been successful in other scenarios. For instance, consider if the child learns best through visual cues, or through repetition. Do he/she process information best in short spurts? Does he/she have auditory processing or sensory-based challenges? Most of all, remember that special education is just good education! These strategies can work for all children.

  1. Straight Talk:

Though one might be tempted to “soften” the topic with “gentle” language, it can be more helpful to use the actual words, like “death” or “died” when talking with a child. Use concrete language and avoid euphemisms. Phrases like, “they are in a better place” or “they have passed” can lead to more confusion and anxiety.

  1. Preparation:

Consider using a short picture story, or checklist, to help provide a framework for next steps, especially if preparing them to attend a funeral or memorial service. Pictures, repetition, and perhaps even doing a “practice drive” to the funeral home, church or synagogue can help the child understand what to expect. Have a trusted adult on hand to be with the child if they need a break during the service.

  1. Emotions:

Many children with special needs have difficulty reading the emotional cues of other people. Preparing them for emotions they and others might experience can be helpful. Let them know some people may be sad and crying, and it’s ok if they feel the same way. Preparing for the emotional aspects of the experience with pictures or images, such as those provided by Symbol Stix (www.n2y.com), can be particularly useful.

  1. Sensory Processing:

After someone dies, disruptions in routines are common. Many more people may be in the child’s home, and there are likely new sounds, more hugs, and other changes that can challenge a child’s sense of order. Consider what sensory-based strategies have been helpful for the child in the past, and utilize those during this experience. Perhaps the child might need to take a break in a quiet room, hold a comforting toy, crash into a pile of pillows, or swing outside.

  1. Remembrance:

Support the child in remembering the person who died in meaningful and accessible ways. Ideas include creating a memory box filled with pictures or other mementos; helping to make connections for the child as to the impact of this person on their lives (i.e. if riding a train together, remembering a trip they took in the past with the person who died); or creating a short picture story about the person and their death, and ways they remember him/her.

  1. A New Normal:

When possible, try to maintain routines, as they are likely comforting to the child. However, do expect the possibility of regression, as the child may turn to self-soothing behaviors or show traits of an earlier developmental phase. Lean on your existing team of supporters, including teachers, school counselors, therapists, and friends.

  1. Communication:

If the child can communicate verbally, through assisted communication devices or in other ways, continue to encourage questions, even if the questions have no easy answer. We received much feedback about this issue when researching our book, as parents shared how difficult it had been to support a child around the questions that do not have a clear answer (“Why does someone die?” and “What happens to someone after they die?”). Continue to keep the lines of communication open, and acknowledge the frustration around not having a concrete answer to difficult questions.

Death and dying brings up myriad emotions for each of us, which certainly affects how we help our children cope. Keep in mind that you are already an expert when it comes to your child.  Relying on previously established strategies and support systems will go a long way in helping your child process this change in a healthy and developmentally appropriate way. This will lay the foundation for coping with other unexpected events and challenges throughout his/her life.

Arlen Grad Gaines, LCSW-C, ACHP-SW is a licensed clinical social worker with an advanced certification in hospice and palliative care based in Bethesda, Maryland. She is co-author of I Have a Question about Death: A Book for Children with Autism Spectrum Disorder or Other Special Needs (Jessica Kingsley Publishers).

Meredith Englander Polsky, MSW, MS Special Education, founded Matan (www.matankids.org) in 2000, and has helped improve Jewish education for thousands of children with special needs. She co-authored  I Have a Question about Death: A Book for Children with Autism Spectrum Disorder or Other Special Needs (Jessica Kingsley Publishers).

Please visit their website at www.ihaveaquestionbook.com for more information.

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Emotions of Suicide Loss

Reaching out to fellow Aspies, Lisa Morgan proffers her insight and advice to ensure that others on the autism spectrum don’t have to face suicide loss alone. Her book, Living Through Suicide Loss with an Autistic Spectrum Disorder (ASD): An Insider Guide for Individuals, Family, Friends, and Professional Responders is an honest look at the immediate aftermath of suicide loss, how emergency responders can help, and the long-term implications of living with suicide loss for individuals on the autism spectrum.

“A suicide loss can elicit such intense emotions that a person with Asperger’s Syndrome (AS) can be quickly overwhelmed and flooded with out of control feelings.  The complicated grief, possible trauma, and relationship difficulties are some of the reasons for the emotional flooding a person with AS might experience.  I have experienced emotional flooding many times since my husband completed suicide in 2015.  I am going to share with you the coping skills that worked for me as I continue to understand and gain control over my troublesome emotions.”

  • Complicated Grief

“Complicated grief is grief that is coupled with anger, rejection, and feelings of guilt to name a few. Anger is the lion of my emotions. It’s wild, ferocious, and can maul my heart before I even know what is happening. I have learned to let it out slowly in small, manageable bits.  There are different ways this can be done. The easy way is to recognize when you are feeling angry and go with it while still maintaining control. Hit a pillow, punch the couch, or the mattress on the bed until you are spent and have no energy left. Go for a brisk walk or a run. For me, the coping skill is to do something physical. I have found emotions caused by rejection and feelings of guilt can be reasoned away somewhat by logic. Accepting that the decision to complete suicide was not up to you, but was responsibility of the person who died by suicide is the first logical step. I worked at accepting my husband’s decision and releasing myself from feeling any rejection and guilt.  There were uncomfortable emotions I had to sort out, but the comfortable logic of reason helped very much. It doesn’t happen overnight. Healing from complicated grief is a process that will take time. It’s an investment in a future of hope, happiness, and health.”

  • Possible Trauma

“There is possible trauma involved in losing a loved one to suicide. There are people who witness the suicide, find their loved one after the suicide, or who reach their loved one in time to try to save them, only to have their loved one still not make it. The trauma added to the complicated grief can bring out confusing emotions and flood an adult with AS. When I experience emotional flooding I shut down. My senses are extremely hyper-sensitive. I can’t control my anxiety which leads to lots of crying, and all I want to do is to withdraw inside of myself. When my emotions flood, I try to reach out to someone who can ground me and help me to regain control. It’s usually very helpful to have someone repeat truths until I can feel that my emotions are calming down. If I can’t find someone to reach out to, I can stay emotionally flooded for a long time. Instead, I try to draw, write, listen to music, take walks, and use the coping skills I know have worked before until I feel better. It can be difficult to actually start using the coping skills, but with determination it can be done.   One thing that I have learned with all the emotional flooding I’ve experienced is it will dissipate eventually. The more coping skills I use, the faster I have felt better.”

  • Relationship Difficulties

“I have yet to completely understand how some relationships disintegrate for the survivor of suicide loss at a time when those relationships are needed more than ever before. It’s a painful absence for sure. I had friends tell me they would stay with me no matter what I was going through and then- leave soon after the worst experience of my life. As an adult with AS, trust is extremely important, yet dreadfully hard to do because of my early school years where I learned to not trust anyone. The reason I can still trust after some relationships died with my husband, is because I still have some friends that were true to their word and stayed with me the whole time even until now. The emotions of losing the relationships I did—were painful, confusing, and left a big hole of emptiness in me.  The pain that comes with relational loss is deep. I thought those friends would be my friends for life. Acceptance is the key to coping with lost relationships. Remembering that the friends who left decided to go and there’s nothing I could do about it. Is it difficult to accept? Yes! Is it impossible to accept? No.”

“Nothing that has happened since the loss of my husband to suicide has been easy. Knowing that the aftermath of suicide loss is terribly hard has helped me to take up the challenge to succeed, to thrive, and to move forward. I’m worth it, you’re worth it, and we all matter.”

To learn more about Lisa Morgan’s book or to purchase a copy, click here.

Living Through Suicide Loss is a valuable addition to suicide grief literature. Morgan’s account of the challenges she faced, following her husband’s death, will resonate deeply with all suicide loss survivors.  The special challenges she documented as someone with Asperger’s syndrome, will sensitize and empower all involved in such tragedies.”

—Ronnie Susan Walker MS, LCPC, Founder: Alliance of Hope for Suicide Loss Survivors

“The excellent and much-needed book deals with the specific issues—emotional and practical—faced by people on the autism spectrum when a loved one completes suicide. Written from a personal, lived experience perspective, this sensitive and valuable book validates the experience of readers and helps them to manage what is essentially unmanageable.

—Jeanette Purks, autism self-advocate and author of
The Guide to Good Mental Health on the Autism Spectrum

 

Why We Need to Break the Silence Around Suicide, Especially for our Children

Louise Moir explains why she wrote Rafi’s Red Racing Car, details her own experiences, and expresses the need for a breakdown in the stigma that surrounds mental illness and suicide.

I lost my husband to suicide in 2011 following his brief decline into mental ill health that was triggered by a job redundancy. My sons were aged 4 ½ and nineteen months. Rafi’s Red Racing Car is the book that I wished I’d had at that time to help me with the terribly painful and bewildering task of trying to explain to my boys what had happened to their Daddy.

Before their father’s suicide, my children had not yet experienced death of any kind, so they had absolutely no understanding. I quickly learnt that their grief was too raw and overwhelming for them to be able to tolerate me talking directly about the tragedy that had enveloped us all. Very young children are very visual and respond well to explanations in pictorial or metaphoric realms. I found a wealth of good, age appropriate books that helped to explain death and the emotions that surround loss and these helped tremendously. Identifying with the character in the book who was experiencing similar events and emotions to themselves enabled my sons to externalise their own feelings, begin to understand their experience and led to them asking me questions about their own loss.

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No matter how young the child, honesty is the best way…


That is according to Nathalie Slosse, author of Big Tree is Sick, who tells the story of how the book came to be, as well as laying out her case for complete honesty as the best way to engage with children when helping them to understand serious illness.

In surveys on what values ​​we consider important, honesty is always highly rated, usually even as the most important quality. However, when it comes to honestly confiding something serious to our children, we often want to spare them the grief that the harsh truth can bring. It is a dilemma I struggled with when I was treated for breast cancer, and it’s why I want to provide a resource to others in the same situation today.

Sometimes people ask me “Did breast cancer change your way of life?” I wish I could reply that this was not the case; it’s true that prior to my diagnosis I followed my heart when it came to important life choices. But if I’m honest, I must admit that without the painful episode in 2007, I would not be doing what I do now. The battle I had with breast cancer as a mum of a two year old boy helped me discover that I can help people find happiness in difficult circumstances. In 2010 I founded the association Talismanneke to further explore that path.

But let’s start at the beginning.

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Understanding the Mind of a Grieving Child

By Elke Barber, young widow and author of ‘Is Daddy Coming Back in a Minute?’ and ‘What Happened to Daddy’s Body?’ offers her thoughts on the mind of a grieving child, and how best to reach them.

Grieving childWhat picture pops into your head when you hear the word ‘death’?

Chances are, a pretty uncomfortable one. But crucially, one that you understand. You understand immediately what death means, and all the sadness, grief and emotion that is associated with it.

Do you know what a three-year old thinks of when he hears the word ‘death’?

Nothing. Because, chances are, he has never heard of it before. He doesn’t know what it means! He doesn’t even know that such a thing exists…

In April 2009, I was faced with having to explain to my three-year old just that: death. My husband had suffered a totally unexpected fatal heart attack; no family history, no previous symptoms, aged only 34. And our son Alex was the only person with him at the time. He managed to raise the alarm and get an ambulance there, but sadly Martin died at the scene. All of a sudden I found myself a young widow and a single Mum to two grieving children: Alex, aged three, and Olivia, aged only 11 months…

“He’s still so young – he won’t remember.”, and “He won’t understand.” were the well-meaning phrases I heard most often at the time. But I quickly learnt that these preconceptions couldn’t be further from the truth. I remember Alex lying in bed one night, not too long after his daddy’s death, and innocently asking “How many more sleeps until Christmas?” – I tried to work it out in my head, only for him to follow this with “And how many more sleeps until I have to die Mummy?” – I was completely taken aback… Continue reading

Children’s Grief Awareness Week: Grief Pulls People Together

Children's Grief Awareness

The arrival of Children’s Grief Awareness Week sees author Emmi Smid reflect on some memorable feedback to her ambitious book – Luna’s Red Hat. The beautiful book helps children cope with loss and suicide, and here Emmi shares some of the insights gained from creating and sharing the book with the world.

A few months after Luna’s Red Hat had been published, I received a letter in the post, which included a booklet made out of several A4 sheets of paper, stapled together. The cover of the booklet showed an interpretation of the cover of Luna’s Red Hat, drawn with colour pencils and way more colourful and playful than my own version. I was very intrigued. I opened the booklet and found more copies of drawings from the book. They were drawings from a child, I could see that, but I found it hard to guess their age, as they were really good. I remember being very touched at this stage. To think that someone had spent time observing my drawings and copying them so precisely – very sweet!Children's Grief Awareness

On the next page in the booklet I found a letter. It turned out that I wasn’t looking at one artist’s work, but at two! The letter was written by two girls whose words touched me deeply. I decided to contact their teacher assistant, Sharon Wills, who had sent me the booklet on behalf of her students, to ask about the girls’ inspiration to write to me, and how old they were. What she told me made my heart melt even more. The girls were both 11 at the time, and they were trying to support their friend, whose mother was dying from cancer. Continue reading

An interview with Marian Partington – author of If You Sit Very Still

partington-cant_if-you-sit-very_978-1-78592-140-7_colourjpg-print

Marian Partington’s sister Lucy was kidnapped by Fred and Rose West in 1973. In 1994, 21 years later, her remains were found in their basement. If You Sit Very Still is Marian’s response to this most traumatic of losses and her journey away from resentment, towards forgivness. 

We spoke to Marian about the process of writing such a unique and intensely emotional book. 

Marian, you wrote an essay on Lucy’s disappearance called Salvaging the Sacred in 1996. What motivated you to build on this, and to write If You Sit Very Still?

The essay was published in the Guardian Weekend and there was a huge, generous unexpected response which somehow changed me and honoured my continuing purpose. There was a hunger for meaning and wholeness that resonated within me, surprised me. It felt urgent and vital. There was no turning back. I felt heard and understood and realised the necessity of continuing to grapple with questions that wouldn’t go away; to stay true to this unravelling, wherever it may lead, however long it would take and to continue to write. The question of how to live with less harm, how to deepen our compassion in the wake of human atrocity, continues to challenge me to the core. It is upon this that I build.

Your language throughout the book is both lyrical and unflinching in its description of the events of Lucy’s disappearance. It’s a very powerful narrative. How did you feel while writing it? 

Finding words, finding a voice was almost impossible at times, yet remaining silent was not an option. If I had tried to carry on with no words, trapped in the frozen silence, I would have allowed death. The words that arose within me came from an instinctive need for a terrible truth to survive, a bearing of witness, a speaking by proxy in the face of unspeakable demolition. So writing became a way of allowing myself time and solitude to experience my grief and to face the unbearable pain of what had happened to Lucy.  Each word felt like a rung on a ladder leading from a deep pit. It felt empowering and honouring of our shared love and study of English literature to write. It felt as if we were raising the register through the grace of the words that arrived. It felt as if we shared a sacred realm. I felt blessed and guided.

Lucy converted to Catholicism before her disappearance. Years later, you joined the Religious Society of Friends (Quakers) and spent time in Buddhist retreats. What part has faith played in your journey to forgiveness?

It felt significant and hugely challenging in a way that was ‘beyond’ any formal religious faith. Lucy ‘disappeared’ five weeks after she was received into the Catholic church and we found out five weeks after I had joined the Quakers, twenty years later. I remember thinking that if there was anything of value in a religious faith it needed to show up now. Shared silence was important. To allow what lies within to surface and to be transformed.

I made the vow to forgive the Wests after a seven day silent Buddhist retreat. I realised that this would be the most creative, imaginative way forward, but I had no idea what it would involve and how it might come about. My faith was to trust that I would be shown a way. I call the religious words around this inner work ‘barnacled’. ‘God’, ‘sin’, ‘repentance’, ‘redemption’,’ forgiveness’- these words feel encrusted and clogged up with ‘aeons of piety’. But to travel within religious communities informed by teachings that aspire towards deepening our capacity to love and feel compassion and to know and live with wisdom has been essential to becoming less self-centred and more open to a greater whole. I have grown towards knowing our interdependence and our connectedness and the need to remain open to whatever arises and to learn from that. I feel deeply grateful for all that travel with me, for those who unpick their deluded selves and work towards our ‘true nature’ which is at the heart of ‘this great matter of life and death’.

You comment in the book that our society ‘suffers badly from a fear of the reality of death’. Do you feel as though you’ve come to terms with the reality of death?

When I cradled and wrapped Lucy’s bones I faced mortality in a profound way. It was unavoidable and awakening. I felt deeply grateful to be alive. As I grow older and was recently seriously ill it has become more important to reflect upon this reality every day. I feel that there is a gentle, tender, vast, subtle energy that is truly where ‘time intersects with eternity’. Recently I was convinced of this and knew that it didn’t matter if I lived or died. I am exploring the reality of radical helplessness (my next book!) and the need to surrender in the face of death and to embrace every moment.

Dreams play a very important part in your journey. The structure of the book is based on the medieval dream poem, Pearl, and you highlight five major dreams as signposts towards the act of forgiveness. How did you interpret these dreams as particularly significant?

All I can say is that the dreams felt ‘real’, almost more real than everyday life. They needed to be faced, heeded and integrated. They led me to reflect and act with confidence. I knew there was a truth in them that could not be ‘thought’. Maybe they came from ‘the collective unconscious’. They were compelling and profound, as if they were drawn from a deep well of creative imagination. To finally realise that the book that Lucy had in her bag the night that she was abducted from the bus stop was the ‘shape’ that I needed for this book (after sixteen years of writing!) – this fills me with pleasure and gratitude.

In many cases, it is the perpetrators who are remembered, more so than the victims. How does that make you feel, and why do you think that is?

Yes, I think that this was and continues to be something that drives me to speak for Lucy (Primo Levi called it ‘speaking by proxy’) and to reclaim her as my sister from the labels ‘missing person’ and ‘West victim’. The need to find the words, carefully, so that Lucy can live in people’s minds in all her complex, fiercely intelligent beauty and aspirations was involuntary. I couldn’t just leave her ‘out there’, sticky and stained by the media representations.  I felt sad that my energy could not extend to doing that for all of the ‘West victims’, but I try to at least name them when I can. Eventually I realised, through painful self-confrontation on long Buddhist retreats, that the perpetrators and their family were also victims, and that I am also a perpetrator and a bystander. I think it is easier for the public to demonise perpetrators than to try and connect with the suffering of those who are labelled ‘victims’. This is deeply unhealthy for our society. It makes me feel frustrated and sad that this is the case. It seems that we need to dig deeper, look within and learn something more about what it means to be human in response to human brutality and violence.

You have shared your story (and Lucy’s poetry) with inmates in male adult prisons to encourage them to experience victim empathy. How was that process for you?

I feel very privileged to have worked in 15 or so different prisons over the years (since 2001) in Restorative Justice settings. It has given me an opportunity to know that there is ‘that of God’ in everyone I have met and that sharing this story has brought healing in its wake. Meeting people who have committed serious crimes (rape, murder, sexual abuse) and listening to them respond to us with their own heart breaking stories has helped me to deepen my trust and to know that Lucy’s suffering is bringing something good into the world, despite the terrible loss and horror of it all. My work in prisons with the Forgiveness Project (www.theforgivenessproject.com)  since 2005, with a 3 day programme called RESTORE, as a speaker and a facilitator has been even more amazing because it involves two speakers, one ‘victim’ and one ‘perpetrator’. The labels drop away and the prisoners begin to thaw and tell their own stories. Our work in a women’s prison with creative writing, as a follow up to RESTORE has led to a sharing of Lucy’s poems and a great harvest of poetry from the women. This has all helped with my healing enormously. It lives up to the meaning of Lucy’s name: light. I feel her gentle spirit is at work in the world.

You mention that your work as a homeopath has informed your work in male prisons. How so?

In my work as a homeopath for the last thirty years I have listened to many stories of traumatic loss and witnessed the serious dis-ease that can come from unresolved mental/emotional pain. As a homeopath I have learnt much about the path towards healing (moving from dis-ease towards becoming whole) with its unexpected twists and turns. I have had to apply this knowledge and experience to my own life and then to those I have encountered in prisons. I have tried to use words and the little woven bag that Lucy made for me when she was 8 years old as ‘remedies’ in the prisons and to listen as an ‘unprejudiced observer’. First I have had to face what needs to be healed within me. It seems to come back to developing a for-giving, compassionate heart: to face, accept and let go. I have known my own murderous rage and that it is easier to delude oneself and remain in denial than to begin to thaw. I work with ‘similar suffering’, growing into the truth that an old Chan master gave to me: just know that your suffering is helping to relieve the suffering of others. I feel grateful to all those I have worked with and met in prisons. This work generates cycles of compassion.

What would you like readers to take away from the book?

I hope that readers may learn more about the journey from the frozen silence towards the shining silence, from cruelty towards compassion, from harm to healing, and that carefully chosen words can initiate change. I hope that this book will help to confront and dissolve the roots of fear and prejudice that lie within and without, and that it will help to nourish and allow a more generous and loving world. I hope that people will come to know Lucy, my sister and feel something of the love that I feel for her, that seems to deepen.

For more information or to buy the book, please follow the link.

 

 

A Q&A with Rosalind Bradley – author of A Matter of Life and Death

We talked to Rosalind Bradley about her new book, her motivations for writing it and her relationship with the concept of death.  Bradley_Matter-of-Life_978-1-84905-601-4_colourjpg-print

What motivated you to write A Matter of Life and Death?

The trigger for this book was my mother’s sudden death while she was staying with us in Australia, on holiday from England. It was a few days after ‘9/11’. One day we were strolling around the Sydney Opera House, the next day she was in Emergency Department following a cardiac arrest. I can still recall the physical and emotional numbness I felt that day and for many months afterwards. Her death completely shocked me as there had been no signs of any ill-health.

I had just started a new job, which certainly suffered as I tried to come to terms with this new reality. I am convinced now that the emotional numbness I felt inside me, which later manifested itself in chronic back pain, was the build up of grief inside me. In the wake of my mother’s death and the death and destruction from ‘9/11’, I became intensely curious about death and gradually, through a long period of spiritual and physical renewal, I accepted what had happened.

Several years later, after two close friends who were siblings died, I felt even more driven to come to terms with what is death? I knew I had to face up to my own fears and decide how I wanted to live the rest of my life. Exploring the mystery of death in all its rawness and complexity and gleaning some meaning from it led me to create A Matter of Life and Death.

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