Grief and loss
I couldn't see a day when it would ever be different. I just couldn't see the light at the end of the tunnel. And I remember being in such pain about this, about having lost all my dreams and my hopes and I remember just wanting to talk to someone who would know, what it was like, who had been through it, and who could tell me that I wasn’t going to feel like this forever. Noreen (mother) - from the video ‘It’s a Long Road’.
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Introduction
The losses connected with having a child with a disability are many and varied. The grief that goes with those losses can be very powerful and at times, overwhelming. We hear about depths of feeling and despair that, it seems, words just cannot describe. There are also heart-warming stories of people travelling this ‘long road’ and the wonderful experiences they have had along the way.
We hope you find something here that touches a part of you and provides a way to connect with others who have been through very hard times, challenges and experiences. They have come through OK and so can you. Sometimes people feel pressured to be doing something about their grieving. However we also need to be aware that sometimes, enough energy is going into getting on with every-day practicalities or dealing with the here and now. It is not realistic or helpful to be pressuring people at those times, or indeed at any time, in relation to their individual experiences of grief. We encourage you to explore this section at your own pace, and if you feel the need to leave it and come back another time, it will probably still be here for you, and growing.
Disclaimer: General information only - you should consult with the relevant professional before applying it to a particular situation. See disclaimer details.
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What is loss?
When we talk about loss or losses in connection with disability, we are talking about some things that are really obvious, but we are also talking about losses that take some time to think through. A child who has difficulty walking has a visible loss, something we can see and face every day. But there are other hidden or indirect losses that don’t become obvious until something happens that brings these losses to our attention. For example, a person who has lost some ability to walk, may also lose:
- the ability to keep up with peers walking in the playground
- some of the possibilities they had for recreation
- confidence in some social situations
- sense of control over their life
- their view of themselves as a ‘lucky’ person
- faith in a higher being
- some of their hopes for what the future holds.
These losses will be different for each person, so none of the above may necessarily happen. There may be lots of other losses not listed here that can happen for some people. It is important to understand that the degree of physical disability or loss does not necessarily match up with the other losses connected with that disability.
A psychologist or counsellor can help people work out what the losses are in different areas for a particular person. The losses may be different for different members of the family. It may be worth working out the losses that have happened as well as the losses that are feared or anticipated. This can be a big step towards dealing with losses in a way that is constructive.
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What is grief?
Grief is the way we describe in 'short-hand' the complicated mixture of feelings, emotions, behaviours and physical reactions that a person may have, connected with the experience of a loss. Grief can be something that is short-lived but more often it is an enduring process, that has peaks and troughs. There may be times when it seems like grief will never really go away completely. But there is hope.
What feelings can be connected with grief?
Emotions that often accompany grief include:
- shock, disbelief and denial
- sorrow and sadness
- anger, irritability and resentment
- numbness
- fear and guilt
- a sense of loss of control, powerlessness, or hopelessness
- despair, depression and isolation
- I’m over it – I’m feeling much, much better
- acceptance.
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What ways of thinking can be connected with grief?
The thoughts of a grieving person can often turn to:
- bargaining
- confusion
- poor attention, difficulty concentrating
- problems with memory
- scary or morbid thoughts about death or trauma
- intrusive and repetitive thoughts
- why me? why us? why my child?
- difficulty making decisions
- thinking about ways to solve problems
- repetitive dreams or nightmares
- loss of a balanced perspective.
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What physical changes can be connected with grief?
The human body can react to grief with:
- a feeling of emptiness in the stomach
- tightness in the chest
- sweating, shaking and trembling
- loss of balance, dizziness and muscle weakness
- fainting
- changes in sexual appetite - usually lower
- higher heart rate
- feeling like vomiting or being sick
- listlessness
- aches and pains
- a heightened sense of arousal, such as that associated with a ‘fight or flight’ response.
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What behaviours can be connected with grief?
People who are grieving can react with:
- increased aggression
- changes in sleep patterns
- changes in eating habits
- withdrawal from relatives, friends or work colleagues
- crying, weeping
- changes in activity levels, for example, inactivity, restlessness or over-activity
- increased compulsiveness (in some people)
- staying in bed and not wanting to face the day
- engaging in rituals
- making shrines or keeping shrines
- avoidance of certain places or people
- visiting and re-visiting of certain places or people
- not wanting to talk, or not able to talk on particular topics
- sighing
- treasuring and hoarding of objects or places
- repetitive behaviours
- presenting a face of coping or control
- becoming more concerned with work, or spending more time at work.
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What are the normal reactions to grief?
All of the above can occur as a normal part of grieving. However, people may be more in need of help if they fear that any combination of these reactions appears to be having long-term effects that they are not comfortable about. They may also want to seek help if changes are starting to have negative affects on relationships. Remember, there is nothing abnormal about seeking out help. In fact, it’s quite normal and common. Psychologists at Novita welcome calls from people who are experiencing any of the above changes. They can help sort out what sort of help is needed, if any. They can also reassure people just how normal some of these experiences can be.
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Real life examples of grief reactions
The following file contains a collection of intensely personal accounts of the experiences of a number of parents of children with disabilities regarding grief and loss. They have been collected by Novita Psychologists in the course of their work with parents and also from a number of videotapes.
Are there stages of grief?
Elizabeth Kubler-Ross is famous for her work with people who were dying and working with members of their families. She described stages of grief such as:
- denial
- anger
- bargaining
- depression
- acceptance.
These and other stages have become part of popular thinking around grief. While there can be a place for thinking about grief in stages, it can be very misleading because no two people have exactly the same experience of grief. It can also put unfair pressure on a person to move through stages of grief and ‘move-on’ when grief is thought about in this way. The idea that a person can reach ‘acceptance’ of a situation that appears to most people to be unacceptable, is also questionable.
Disclaimer: General information only - you should consult with the relevant professional before applying it to a particular situation. See disclaimer details.
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Grief work
Worden (1991) talked about four tasks of mourning and these can be applied to grief in relation to disability. Most of grief work usually refers to working through the pain of grief. The four tasks described by Worden when applied to disability could include to:
- accept the reality of the loss
- work through the pain of grief
- adjust to the new reality
- emotionally relocate the old reality and move on with life.
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More recent models of grief and loss
Carol Irizarry and Michael Bull propose a range of models that are more widely accepted today than simple stage models. The model that seems to capture most of current thinking around grief is a ‘dual process model of coping with bereavement’ originally described by Stroebe and Schutt (1999). In the dual process model, everyday life experience includes some activity that is not grief related but in dealing with a loss, energy and time shift between processes that are ‘loss-oriented’ and ‘restoration-oriented’.
Loss-oriented activities include:
- grief work - working through the pain of grief
- intrusion of grief into thinking
- breaking bonds and ties
- denial and avoidance of restoration change.
Restoration-oriented activities include:
- attending to life changes
- doing new things
- distraction from grief
- denial and avoidance of grief
- working on new roles, identities and relationships.
In this model, there is no set course or script and therefore there isn’t the same pressure on people to be at a particular place, or stage, at a particular time or within a particular time-frame.
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Will the pain stop? Will it ever end?
Yes, there will be times when grief and emotions around grief are not part of your thinking. But that does not necessarily mean they are no longer part of your thinking, for good. At times, something will happen to have you feeling the same way again, or experiencing the same emotion in a slightly different way. Sometimes this happens at particular times that you might predict you would be affected that way, for example, birthdays, when a child is starting or finishing school, and special anniversaries. But there can be times when, for no apparent reason, grief experiences are re-lived or suddenly arise again. These can be disturbing and upsetting at the time, but they are usually normal experiences, and you will feel better again later. Sometimes these can be ideal opportunities to reflect, or to remember good times, or times when you had different hopes and dreams. The terms ‘chronic grief’ or ‘chronic sorrow’ have sometimes been used when describing the grief connected with having a child with a disability, and these terms seem to strike a chord when heard by some parents.
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Children and grief
Some things to keep in mind about the grief experienced by children:
- Children often may go through similar experiences of grief as adults do.
- Even though they may go through similar experiences, they may not express it the same way.
- Children often haven’t developed the same ability to understand what is going on as adults and may not easily talk about their feelings.
- How children understand and react to loss will depend partly on their age and developmental level.
More information about children and grief.
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What helps?
People who have acknowledged or come to terms with the grief they have experienced report a range of activities and pastimes that can help. This can include any of the following:
Disclaimer: General information only - you should consult with the relevant professional before applying it to a particular situation. See disclaimer details.
Acknowledging that there really has been a loss, knowing it in a real sense.- Connecting with others who have had similar experiences.
- Finding out information about grief and loss.
- Finding articles in newsletters such as the Nexus Parent Newsletter.
- Exercise
- Work
- Hobbies
- Making time for yourself to do what you want and not having others depending on you.
- Counselling.
- Making new friends.
- Reading poetry.
- Reading about others’ experiences and watching videos that show other people’s stories.
- Time - sometimes just allowing yourself the gift of time helps.
- Attending workshops on the topic.
- Learning about forgiveness.
- Writing experiences or thoughts down, keeping a journal.
- Attending a memorial if someone has died.
- Participating in some ‘grief work’.
- Making sense of the loss - attaching some meaning to it that is helpful.
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Resources on grief and disability
Stories and poetry
Stories and poetry written by people who have experienced loss can be moving, comforting and inspirational. Go to the Reflections page to read what others have written.
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Selected videos on grief and disability
It’s a Long Road - Noreen LangeA 1 hour video distributed by the Western Australian Carers Association - available from Carers Association of Western Australia, 255 Walcott St, North Perth, WA 6006. The video describes four mothers reflections on having a child with a disability. A parent of a Novita client has provided the following review:
It’s a Long Road is a powerful, emotional account of the experience of four women from Western Australia who speak frankly about their feelings, emotions and thoughts on parenting a child with a significant disability. This is not a sentimental account of children with ‘special needs’ nor does it gloss over the tragedy and impact of the experience. It is a beautiful portrayal of courage, belief and above all capacity of people to provide the love and care needed to this challenging and vulnerable group of children. It is highly recommended to professionals working in the area and is also suitable for parents in similar circumstances.
Going the Distance A 30 minute video of interviews with three fathers of children with disabilities. It is available for loan from the Novita Toy and Resource Centre or can be purchased from ‘i.d.entity.wa’ by telephoning (08) 9474 3303, fax (08) 9474 3315.
You’re Not Alone A video made by Novita of several parents telling their story of the experience of having a child with a disability and the support they have received from Novita. Available for loan from all Novita Offices or the Novita Toy and Resource Centre.
A Mum’s View A 20-minute video made by a Novita psychologist with the kind co-operation of a mother of a Novita client. Captures the experiences, including grief experiences of having a child with a disability, with particular reference to differences between the mother’s and the father’s ways of reacting in the early stages and reaching resolution of issues as the child got older.
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Books and articles on grief and loss
Books
The following books may be obtained through the Novita Toy & Resource Centre. If you are registered with the Centre, you can borrow them by completing the on-line request form.
- Fitzgerald, H. (1992). The grieving child: A parent’s guide. New York, Fireside
- Heegaard, M. (1991). When something terrible happens. Woodlands Press, Minneapolis
- Kubler-Ross, E. (1983). On children and death: How children and their parents can and do cope with death. New York, Touchstone
- Levang, E. (1998). When men grieve: Why men grieve differently and how you can help. Fairfield Press, Minneapolis
- Peddy, E. & Paddick, L. (1995). Stop the world, I want to get back on! Published by the authors in Adelaide. ISBN: 0 646 23488 9
- Peddy, E. (1989). Creative coping for dealing with loss and change. Published by the author in Adelaide
- Pennels, M. & Smith, S.C. (1995). The forgotten Mourners: Guidelines for working with bereaved children. London, Jessica Kingsley Publishers Ltd
- Wolfelt, A.D. (2001). Healing your grieving heart for kids: 100 practical ideas. Colorado, Companion Press
- Wolfelt, A.D. (2002). Healing a parent’s grieving heart: 100 practical ideas after your child dies. Colorado, Companion Press. (Novita Library Call Number 155.937 WOL)
- Worden, J.W. (1991). Grief counseling and grief therapy: A handbook for the mental health practitioner. Second Edition, London, Routledge
A more extensive listing of books is provided as part of the Novita Grief and Loss Package.
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Articles
- Irizarry, C. & Bull, M. (2000). Selected readings in loss and grief.South Australia. (Novita Library call number 155.937 IRI)
- Stroebe, M. & Schutt, H. (1999). The dual process model of coping with bereavement: Rationale and description. Death Studies, 23, 197-224
Parenting S.A. Easy Guides
Located on the Parenting S.A. website (see Related External Links list) :
- #59 Marching to a different drum (developmental delay)
- #60 Children with a disability
Or contact the Loss and Grief Centre
26 Daphne Street
Prospect SA 5082
Telephone: 8305 9670
Fax:8344 1076
E-mail
Star Bear children's support program
‘Star Bear’ joined Anglicare S.A. within the Loss & Grief Centre in July 2002 as a support program for grieving children. Among the activities that Star Bear provides are camps that are held 3 or 4 times per year. The camps are primarily for children between the ages of five and fourteen who have experienced a loss or bereavement in their immediate family. Star Bear may be an option for siblings of children with disabilities.
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Websites on grief
See Related External Links list
The Novita grief and loss package
The Novita Grief and Loss Package contains more extensive information on grief and loss resources than can be provided on this page. Find out what is included in the Novita Grief and Loss Package.
Disclaimer Detail: The above information on is of a general nature only and does not constitute advice. Novita Children's Services makes no representations, express or implied, as to the accuracy, usefulness, suitability or application of the information to a child's particular circumstances. Use of the information above is at your sole risk, and you should seek professional advice before acting or relying on the information. Novita Children's Services accepts no liability for any damages or loss that may arise from the use of, or any omission from, the information provided. In using this site, you are agreeing to the Terms and Conditions of Use for the site.