Although the child with special needs may express their emotions and feelings differently, they may well share the same depth of grief as others.
The following strategies, used with many grieving children, will still apply:
Children with learning difficulties may find the concept of death and its permanence particularly difficult to grasp and will benefit from simple, practical examples to illustrate the difference between dead and living things - for example, a dead insect.
However, visiting a graveyard can be especially confusing for children with learning difficulties due to the lack of visual evidence as to exactly where the dead body has gone.
Children, especially those with learning difficulties, do not need protection from the feelings and emotions associated with grief but support and help to express them and reassurance that these sometimes powerful and overwhelming emotions are normal and necessary.
Children with learning difficulties may have less vocabulary and tend to express their feelings even more through behaviour rather than words.
The following can be comforting ways to share feelings:
Children with special needs and their grief: Information sheet available from the Child Bereavement Charity Support & Information Service 01494 568900, or website http://www.childbereavement.org.uk/files/images/19__Children_with_Specia.pdf
Our thanks to Erica Brown, Head of Research and Development at Acorns Children's Hospice Trust
Both the English and Scottish Down's Syndrome Associations publish helpful leaflets about death and funerals. Please see attached leaflet.
The Down's Syndrome Association
Langdon Down Centre
2A Langdon Park
Tel: 0845 230 0372
The Down's Syndrome Association provides information and support for people with Down's syndrome, their families and carers, as well as being a resource for interested professionals.
They offer a leaflet entitled: People with Down's syndrome - Bereavement.
Down's Syndrome Scotland
158/160 Balgreen Road
Telephone: 0131 313 4225
Fax: 0131 313 4285
Email: info [at] dsscotland [dot] org [dot] uk
Down's Syndrome Scotland works to improve the quality of life for everyone with Down's.Their members include people with Down's syndrome, families and professionals. They provide information, support and advice.
The National Autistic Society
393 City Road
Tel: 0845 070 4004393
Email: autismhelpline [at] nas [dot] org [dot] uk
The National Autistic Society (NAS) Autism Helpline is an information and advice service for all those affected by autistic spectrum disorders in the UK.
BILD The British Institute of Learning Difficulties
Tel: 01562 723010
BILD is committed to improving the quality of life for the 1.2 million people in the UK with a learning disability.
People with Down's syndrome
The loss of a loved one is perhaps one of life's most stressful events. After the death of someone you love you experience bereavement, which literally means to be deprived by death. For example, you may experience bereavement at the loss of a family member, a friend or a pet.
In the past, people with learning disabilities were denied the right to grieve because other people mistakenly assumed that they had no capacity to do so. The lifespan of those with Down's syndrome is steadily increasing and as a result of this, many are experiencing the death of their parents for example, who in many cases have been their main carers. When people with learning difficulties are bereaved, their reactions to the loss are frequently misunderstood.
Grieving is a highly individual process and people respond to bereavement and express their grief in different ways. The person with learning disabilities experiences the same processes as the rest of the population. The grieving process for those with learning disabilities may however take longer and may manifest itself in ways that are not instantly recognisable. Usually people can work through their feelings about an unhappy event and come to terms with it. People with learning disabilities will probably need help to do this.
Many people with learning disabilities find change of any kind difficult to cope with. Routine can be particularly important to people with learning disabilities providing individuals with an important sense of order and structure to their lives. However, it has been the experience of people with learning disabilities that other people make decisions that affect their lives without any warning, any element of personal choice or of control.
Common Responses To Grief
Whether or not they have learning disabilities, people react individually to grief, but most people experience at least some of the common responses to bereavement. These are summarised below:
An initial sense of shock, numbness, disbelief and denial accompanied by one or more physical symptoms such as lack of energy, trouble in concentrating, remembering and making decisions, hyperactivity, thinking about wanting to die and a sense of unreality.
As the early shock wears off and the impact of the reality of the death is felt, people may experience the following reactions:
Emotional: Anger with the deceased or with those who it is believed could have prevented the loss, guilt, anxiety, fear, panic, depression, despair, mood swings, irritability, crying, sadness, yearning and pining, sense of being abandoned.
Physical: Symptoms such as pain, appetite disturbance, breathlessness and illness. The person with learning disabilities, who is less able to express himself or herself verbally, may experience and exhibit increased physical symptoms of grief.
Behavioural: Low vitality, more than usual need for sleep, sleeplessness, hyperactivity, withdrawal and a lack of interest in normal activities.
Mental: Confusion, hallucinations, nightmares, searching for the deceased, poor concentration, regression, loss of skills and insecurity.
Resolution of grief occurs when the bereaved is able to think of the deceased without pain or anger and can recall the times they had together in a positive way. The journey towards resolution of grief is not always a continuous or direct one. It is also a journey that may take a considerable period of time. It is important to note that not everyone will experience all of the symptoms detailed above.
Sometimes grief can continue into depression and this may well show itself, in someone with a learning disability, in unexpected forms. Although depression sometimes strikes out of the blue, it is often triggered by some unhappy event such as bereavement. These unhappy events affect most people with learning disability at some stage of their lives. However, not everyone will get depressed. Sometimes one loss can then lead on to other major changes that may result in depression. For example, after parents have died, people with a learning disability are often moved to emergency residential care. This means that they lose their home, their familiar possessions and routines, as well as their parent and carer. Sometimes a more serious and persistent depression develops. This is a particular risk for people with learning disability because carers often miss the early signs of depression. The time to get help is when any changes in behaviour, withdrawal or gloom persist for a lengthy period of time. You should then seek professional help for further information. You may obtain a copy of a publication entitled 'Depression in People with Learning Disability' from the Down's Syndrome Association.
Helping the person with Down's syndrome through the process of Bereavement
Web: www.downs-syndrome.org.uk Helpline: 0845 230 0372