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This Fact sheet is about the brothers and sisters of children who have a severe disability or chronic illness. It is written for parents and for those working with families who have a child with special needs. Every child and family is different and not all the points mentioned here will apply to every situation. The issues discussed are those brought up most often by parents and brothers and sisters themselves.
Spotlight on Siblings
Most of us grow up with one or more brother or sister. How we get on with them can influence the way we develop and what sort of people we become.
As young children we may spend more time with our brothers and sisters than with our parents. Relationships with our siblings are likely to be the longest we have and can be important throughout our adult lives too.
In previous times, children with a disability or chronic illness may have spent long periods in hospital or have lived there permanently. Today nearly all children, whatever they're special need spend most of their time with their family. This means that their contact with their brothers and sisters is more continuous. So it is not surprising that parents have recently been wanting to talk about the importance of siblings and the ups and downs of their daily lives and to seek advice about handling the difficulties that can sometimes arise.
Research about Siblings
Studies about siblings of people with special needs have tended to report a mixed experience; an often close relationship with some difficulties. Sibling relationships generally of course tend to be a mixture of love and hate, rivalry and loyalty. In one study a group of siblings were reported as having stronger feelings about their brother and sister - either liking or disliking them more - than a matched group did about their non-disabled brothers and sisters. As one grown up sibling said:
"It's the same as in any brother or sister relationship only the feelings are exaggerated."
Often having to put the needs of the disabled child first seems to encourage an early maturity in brothers and sisters. Parents may worry that siblings have to grow up too quickly but they are often described as very responsible and sensitive to the needs and feelings of others. Some adult siblings say that their brother or sister has brought something special to their lives.
"Having Charlie has promoted more family activities, and a more affectionate relationship between us all".
29 siblings aged between 8 and 16 were interviewed in a recent study. All said that they helped to care for their brother or sister about whom they spoke with love and affection. The difficulties they experienced were:
· Being teased or bullied at school
· Feeling jealous at the amount of attention their brother or sister received
· Feeling resentful because family outings were limited and infrequent.
· Having their sleep disturbed and feeling tired at school
· Finding it hard to complete homework
· Being embarrassed about their brother or sister's behaviour in public, usually because of the reaction of others.
Growing up together
Most siblings cope very well with their childhood experiences and sometimes feel strengthened by them. They seem to do best when parents, and other adults in their lives, can accept their brother or sister's special needs and clearly value them as an individual. Avoiding family secrets, as well as giving siblings the chance to talk things over and express feelings and opinions, can go a long way to help them deal with worries and difficulties that are bound to arise from time to time.
Below we highlight some of the issues that often crop up for siblings of a child with special needs, and some examples of the ways parents have found of responding to these:
Limited time and attention from parents
· Protect certain times to spend with siblings, e.g. bedtime, cinema once a month
· Organise short term care for important events such as sports days
· Sometimes put the needs of siblings first and let them choose what to do
Why them and not me?
· Emphasise that no-one is to blame for their brother's or sister's difficulties
· Come to terms yourself with your child's special needs
· Encourage siblings to see their brother or sister as a person with similarities and differences to themselves.
· Meet other families who have a child with a similar condition, perhaps through a support
Worry about bringing friends home.
· Talk over how to explain a brother's or sister's difficulties to friends
· Invite friends round when the disabled child is away
· Don't expect siblings to always include the child with special needs in their play or activities
Stressful situations at home
· Encourage siblings to develop their own social life
· A lock on a bedroom door can ensure privacy and avoid possessions being damaged
· Get professional advice about caring tasks and handling difficult behaviour in which siblings can be included
· Try to keep the family's sense of humour
Restrictions on family activities
· Try to find normal family activities that everyone can enjoy, e.g. swimming, picnics
· See if there are holiday schemes the sibling or disabled child can take part in
· Use help from family or friends with the disabled child or siblings
Guilt about being angry with a disabled brother or sister
· Make it clear that it's alright to be angry sometimes - strong feelings are part of any close relationship
· Share some of your own mixed feelings at times
· Siblings may want to talk to someone outside the family
Embarrassment about a brother or sister in public
· Realise that non-disabled relatives can be embarrassing, especially parents
· Find social situations where the disabled child is accepted
· If old enough, split up for a while when out together
Teasing or bullying about a brother or sister
· Recognise that this is a possibility .... and notice signs of distress
· Ask your child's school to encourage positive attitudes to disability
· Rehearse how to handle unpleasant remarks
Protectiveness about a very dependent or ill brother or sister
· Explain clearly about the diagnosis and expected prognosis - not knowing can be more worrying
· Make sure arrangements for the other children can be made in an emergency
· Allow siblings to express their anxiety and ask questions
Concerns about the future
· Talk over plans for the care of the disabled child with siblings and see what they think
· Find out about opportunities for genetic advice if this is relevant and what siblings want
· Encourage them to leave home when they are ready
An adult sister remembers:
I am one of five girls. I am the eldest and was 11 years old when Helen was born. She was a beautiful baby and I fell in love with her instantly.
However, as time went by I gathered from various overheard conversations that something was seriously amiss. Helen had profound physical and mental disabilities and there was a lot of disagreements between my parents on the best thing to do. There were loads of visitors and phone calls but noon ever really explained what was going on.
Eventually my parents joined the local Mencap group. They found this very helpful but I was not keen on having to join them in attending the social activities when I preferred to see my own friends.
One of the difficult things for me was not having enough of my parents 'attention. As the eldest I was often the "little mother". I felt obliged to be supportive to my parents and felt guilty about resenting this. It was not acceptable to complain about Helen's behaviour even though she often bit or attacked us. I was told how lucky I was to have a sister like Helen - a view I did not always share!
It was not until I became an adult that my sisters and I actually talked together about our experiences of growing up with Helen. As a parent myself now I understand how tough it was for my parents. I realise too, that I would have had to compete for attention anyway with four sisters even if one had not had special needs. These days one of my greatest pleasures is the delighted smile on Helen's face when she sees me.
How one family planned for the future:
Ever since I was a teenager I've been anxious about who would care for my brother when both my parents die. I have three brothers of whom John is the youngest. He is 25 and has learning difficulties. He has always lived at home with my parents. I used to feel concerned that my parents had made assumptions about who John's main carer would be and they seemed unwilling to consider any alternatives Three years ago I encouraged them to hold a meeting with all the key family members, including John, to talk about his long term care arrangements. We had a fairly formal meeting, which my husband chaired. We began by acknowledging that Mum and Dad would not be around forever to look after John and that we should get some sort of plan down in writing which we could review a ta later date.
Then we each took it in turn to say what we felt would be the most positive arrangement for John and what level of involvement we wanted to have in his care. It was great having someone chair the meeting so that we were not interrupted even if we said something that others disagreed with. I was actually surprised at how much in common our views were, and how each of us wanted to contribute to John's care. The main areas where we felt differently were about how much money my parents should put into a trust, and about what rights John had as an adult. I certainly felt for the first time that I had a chance to say what I felt about these things.
We came to a joint agreement about what should happen and about what financia1 support would be available. We recognised that there were some issues that we still felt differently about. We agreed to review our plans in 5 year's time, or in the event of changing circumstances.
At the end of the meeting I felt very relieved that at last there would be something on paper, and that we all were sharing the responsibility for John's care.
Since then my father has died and I'm so glad he had the chance to say what he wanted for John.
Working Together for Siblings
Parents are already short of time and energy and mustn't feel that they have to handle everything alone. Those who belong to support groups maybe able to swap ideas with other parents or they could suggest a discussion about siblings at one of their meetings. Any of the agencies a family is in touch with can play their part in supporting siblings, whether health, social services, education or from the voluntary sector.
Increased awareness by professionals of the other children in a family, and recognition of their special situation, can help these siblings to feel that they are part of what's going on. Some of the ways in which this might happen include:
· professionals speaking directly to siblings to provide information and advice
· listening to the sibling's point of view - their ideas may be different to those of their parents
· trying to understand the particular rewards and difficulties they encounter and how these may affect their daily lives
· offering someone outside the family to talk things over with in confidence
· providing support that is flexible enough to accommodate the needs of siblings as well as the child with special needs and their parents
One of the ways of supporting siblings that has been developing recently is group work. Many groups are started by local professionals working together with the support of parents. They tend to be run on a similar format:
· about 8 children or young people take part within a narrow age range, e.g. 9 to 11, 12 to 14
· the group meets weekly for 2 hours over 6 to 8 weeks, plus reunions
· the adults running the group come from several different agencies and professional backgrounds, e.g. teaching, child care , psychology, youth work
· groups offer a mixture of recreation, socialising, discussion and activities such as games and role play; the emphasis is on self expression and enjoyment
· transport is often provided and can offer an extra opportunity for talking
· confidentiality within the group is emphasised
· the group is encouraged to feel the group is theirs, deciding on rules and activities
Those who work with groups of siblings often comment that they learn a great deal from the youngsters taking part. The benefits to siblings include meeting others in a similar position, sharing ideas about coping with difficult situations and having a good time.
"It helped to know that I'm not alone with a disabled brother or sister"
"I liked the trip we had - I'd never been on a train before"
Not all siblings will want to join a group or have the chance to do so, and sometimes supporting a young person individually will be necessary as well as or instead of group work. Projects for young carers often also include siblings in their work and usually offer a mixture of individual and group support.
Siblings and the Law
The Children Act 1989 is the framework for the support offered to children "in need", including those with disabilities. The approach of this legislation is to emphasise the child as part of their family. As well as one or two parents this might include brothers and sisters, grand parents or other relatives, who are often important figures in any child's life. The Guidance and Regulations of the Children Act, which refers to children with disabilities , states that "the needs of brothers and sisters should not be overlooked and they should be provided for as part of a package of services for the child with a disability". So siblings should now be on the agenda of agencies that aim to support families where a child has special needs.
Sometimes brothers and sisters who provide a substantial amount of care are described as young carers. Under the Carers (Recognition and Services) Act, which comes into force in April 1996, carers, including those under18, are entitled to their own assessment. When the needs of the person being cared for are reviewed. However at present there is no requirement for services to support young carers to be provided.
Brothers, Sisters and Special Needs by Debra Lobato (1990) Publishedby Paul Brookes.
Brothers and Sisters - a Special Part of Exceptional Families by Thomas Powell and Peggy Gallagher (1993) Published by Paul Brookes
(These two books from the USA have a lot of information and ideas suitablefor parents and practitioners.)
The Other Children, and We Were the Other Children. Videos and workbook available for hire from Mencap, 123 Golden Lane, London EC1Y0RT. Training material, which covers the main, issues and shows examples of group work
Siblings Group Manual by Yvonne McPhee. Price £ 15.00. Available from Yvonne McPhee, 15 Down Side, Cheam, Surrey SM2 7EH. A manual based on work in Australia with practical ideas for those running groups.
Brothers, Sisters and Learning Disability - A Guide for Parents by Rosemary Tozer (1996) Price £ 6.00 including p&p. Available from the British Institute of Learning Disabilities (BILD), Wolverhampton Road, Kidderminster DY10 3PP.
Children with Autism - a booklet for brothers and sisters by JulieDavies. Published by the Mental Health Foundation. Price £2.50 plus75p p&p for single copies. Available from the National Autistic Society,276 Willesden Lane, London NW2 5RB. Suitable for children aged 7 upwards, and developed from group work with siblings.
© adders.org 2004
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