This fact sheet is about the brothers and sisters of children with a severe disability or chronic illness. It is written for parents and for those working with families who have a child with special needs.

Introduction

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 brothers or sisters. 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[1]. 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