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, and relationships with our siblings may be the most important and meaningful we have.

Nearly all children, whatever their disability, spend most of their time with their family. So it is not surprising that some parents want to talk about the importance of siblings and the ups and downs of their daily lives, and to seek advice about handling any difficulties that may arise.

This guide is about supporting the brothers and sisters of children who have a disability or long-term illness. It is written for parents and for those working with families who have a disabled child. 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. Many of the ideas in this guide have come from parents and professional workers who have attended workshops about siblings run by Contact in recent years.

“It’s the same as in any brother or sister relationship, only the feelings are exaggerated.”
Sibling

WHAT’S IT LIKE BEING THE SIBLING OF A DISABLED CHILD?

Studies about siblings of disabled people have tended to report a mixed experience. They often report a close relationship but there can be some difficulties. Sibling relationships in general tend to be a mixture of love and hate, rivalry and loyalty. In one study a group of siblings of disabled children 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.

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 siblings say that their brother or sister has brought something special to their lives.

“Tom makes me laugh and a stronger more thick-skinned person. He also makes me more acceptant of people and not judge them by how they look.”
Sibling

Seeing the sibling’s point of view

Sometimes parents try hard to do what seems best for a brother or sister, only to find out later that their efforts were not appreciated. One mother stressed that parents need to realise how different a child’s view of life can be. She would try to leave her elder son at his friend’s house while she took his younger brother to therapy appointments, believing that he would find playing with his friend much more enjoyable than hanging around the hospital. But when he was older, he told her that he had felt his brother was going off with her to have fun, while he felt left behind. Wanting to protect your other children from too much of a ‘caring’ role is natural, but it can be helpful to keep the lines of communication open so you can understand the brother or sister’s point of view and avoid misunderstandings. It can be a difficult balancing act, but something that parents need to be aware of.

Whatever your situation, we encourage all parents to consider accessing the support for siblings described in this guide.

“My daughter has had to learn to be very thoughtful about other people less able than herself.”
Parent carer

COMMON ISSUES THAT SIBLINGS EXPERIENCE

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 disability 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 help them deal with worries and difficulties that are bound to arise from time to time.

Limited time and attention from parents

protect certain times to spend with siblings, for example 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

Worry about bringing friends home

talk over how to explain a brother or sister’s difficulties to friends

invite friends round when the disabled child is away

don’t expect siblings to always include the disabled child in their play or activities

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

Embarrassment about a brother or sister in public

realise that the behaviour of non-disabled family members can cause embarrassment sometimes

find social situations where the disabled child is accepted

if old enough, split up for a while when out together

Guilt about being angry with a disabled sibling

make it clear that it’s all right 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

Why them and not me?

emphasise that no-one is to blame for their brother or sister’s difficulties

come to terms yourself with your child’s disability

encourage siblings to see their brother or sister as a person with similarities and differences from themselves

meet other families who have a child with a similar condition, perhaps through a support organisation

Concerns about the future

talk over plans for the care of the disabled child with siblings and see what they think

if your child has a genetic condition, find out about opportunities for genetic advice if siblings want it

encourage them to leave home when they are ready

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 and include siblings in it

try to keep the family’s sense of humour

Restrictions on family activities

try to find family activities that everyone can enjoy, for example swimming, picnics, etc

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

Protectiveness about a very dependent or ill sibling

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

SIGNS THAT SIBLINGS MAY NEED MORE HELP

If a sibling is finding it hard to cope, they may need more help if they:

show changes in behaviour after their brother or sister has a hospital stay

keep asking questions about brother or sister that you can’t answer, for example “what if” questions

get easily annoyed with their brother or sister

complain more than usual or try to get your attention

feel very sad, angry or jealous

are reluctant to talk to you

avoid spending time with friends

find it hard to get homework done or are falling behind at school

are being teased or bullied

are doing too much care

are getting hurt by their brother or sister.

If you feel your non-disabled child or children would benefit from some extra support, see the next section and SOURCES OF SUPPORT section. Local authorities also have duties to support disabled children and their siblings, see SIBLINGS AND THE LAW section.

“T’s disability affects her opportunities and as a family restricts many activities that we would like to do. Her brother can get very resentful which is very difficult to manage.”
Parent carer

HOW PROFESSIONALS CAN HELP

Any of the agencies a family is in touch with can play their part in supporting siblings, whether health, social services, education or the voluntary sector. Increased awareness by professionals of the other children in a family, and recognition of their particular situation, can help these siblings to feel that they are part of what’s going on.

Some of the ways 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 to refer siblings to 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 disabled child and their parents.

“It helped to know that I’m not alone with a disabled brother or sister.”
Sibling

TOP TIPS FROM PARENTS

These tips from parents who have ‘been there’ may help.

Talk about disability and additional needs from an early age.

Talk openly and honestly about your disabled child’s condition. Assure siblings that no one is to blame, and stress that they are an individual with a personality with strengths and weaknesses like anyone else.

Try to find activities that the family can enjoy together, but try to set aside time and activities for each child individually. This should ideally be at the same time each day/week, so that each child has something special. Arrange childcare for your disabled child so that you can do things with his/her sibling(s).

Don’t miss siblings’ important events (school play, sports day and so on).

Praise all your children equally when they achieve something or make a big effort.

Acknowledge siblings’ negative feelings about their brother/sister (as well as the positive ones). Talk about these feelings and about any guilt they may have about them. Explain that everyone gets angry with other family members sometimes.

Allow siblings to speak their mind even if it is difficult.

Teach siblings fun activities they can do with their brother or sister.

Give them choice about spending time with their brother or sister. Don’t expect siblings to always include their brother/sister in their play. Let them retreat to their bedroom, and when they get older let them lock the door.

Discuss how they can talk to their friends about disability, and how it affects their brother/sister.

Limit the type and amount of care and support that siblings do.

Make sure that the sibling’s school knows what is happening at home.

Don’t be negative – siblings can gain and learn from their experiences.

Give siblings permission to enjoy and live their own lives. Don’t let them feel too much responsibility for your disabled child. Discuss any anxiety they may feel about his/her future.

Talk to siblings in the teenage years about plans for the future.

Don’t put pressure on – don’t have too high expectations of siblings.

Celebrate siblings’ achievements.

“Her big brother of 7 years is very supportive – also because he treats her like an equal she (aged 4) is more determined to do what he is doing.”
Parent carer

“Some of S’s friends have said horrible things about J - she found this very hard.”
Parent carer

SIBLINGS AND THE LAW

Social services and social work (in Scotland) are under a general duty to safeguard and promote the welfare of children in need. Disabled children, and potentially their siblings, are children in need under the Children Act 1989 if they are:

“unlikely to achieve or maintain a reasonable level of health or development, or whose health and development is likely to be significantly or further impaired, without the provision of services.”

There is similar legislation in Scotland, Wales and Northern Ireland. Local authorities have a general duty to make a range of services available to help children in need, which could include:

occupational, social, cultural or recreational activities

home help

assistance to enable your child and family to have a holiday.

In England only

The right to assessments for siblings who provide care also exist under the Children and Families Act 2014. This Act places a duty on the local council to assess carers ‘on the appearance of need’. This includes parent carers as well as young carers.

Additionally, under the Care Act 2014 there are strengthened rights for brothers and sisters who provide care and are approaching the age of 18. Here the council must consider the young carer’s own interests and future endeavours, particularly in areas of study and work.

A FEW WORDS FROM SIBLINGS

“I would be a completely different person without her because she brings out the best in me. So although she can be hard work, she is my sister and she means a lot to me so I wouldn’t want her to be any different.”
Sibling

“There are the negative sides to having a disabled brother. He needs constant care and I often get roped into looking after him. This can be tiresome but I find ways of doing things with him that are more fun – such as pushing him on his bike.”
Sibling

“The positives outweigh the negatives and I never want him to be any different (except when he’s screaming in the middle of the night!).”
Sibling

“Looking after her has its plus sides especially when sitting with her gets me out of the washing up and cleaning my room!”
Sibling

“Ollie’s a great judge of character. My friends that accept Ollie for who he is and act naturally around him are always the friends that stick by me and aren’t false.”
Sibling

SOURCES OF SUPPORT

Sibling support groups

Projects for young carers often include siblings and usually offer a mixture of individual and group support. You might also want to talk to the special educational needs coordinator at your child’s school about the possibility of setting up a sibling support group in school.

The Children’s Society
Has a map of young carers projects around the UK, which may offer siblings:

the opportunity to meet other siblings and share experiences

learn new ways of coping

activity breaks

support groups

help with homework clubs

confidential one-to-one support

training – such as self-esteem and confidence building, first aid.

They also have resources for professionals and schools with good practice around supporting young carers.

childrenssociety.org.uk/information/young-people/young-carers

Over the Wall
Runs free activity camps (climbing wall, abseiling, canoeing, archery, swimming, arts and craft, music, drama, sports and games) for children with a range of conditions, their siblings and families.

otw.org.uk

Sibs
Charity supporting siblings of disabled children and adults. Runs workshops, training and events around the UK. Support, advice and information for young siblings, and for parents and professionals supporting siblings.

sibs.org.uk

Books
We have a list of helpful books for siblings to read – or we can look for books for you. Please get in touch at:

info@contact.org.uk
020 7608 8700

There are also a number of books written for parents about supporting siblings. Search for ‘siblings of disabled children’ at online book stores.

If you know the name of your disabled child’s condition
Specific condition support groups often have information and booklets for affected children and their siblings. Please contact our helpline on 0808 808 3555 to find out if there is a support group for your disabled child’s condition. Alternatively you can search our A-Z Directory to find support groups at:

contact.org.uk/conditions

Financial help/grants
We have an online grant search tool, plus a list of charities which provide grants for families with disabled children on our website, or available from our helpline:

contact.org.uk/financial-support
0808 808 3555

Family Fund
Provides grants to families who are caring for a disabled child, which may ease the pressure on siblings:

01904 550 055
familyfund.org.uk

For bereaved siblings

The Compassionate Friends
Support for grown up bereaved siblings and parents, plus signposting to support for younger bereaved siblings.

tcfsiblingsupport.org.uk

Hope Again
A free helpline and website for young bereaved people, run by Cruse.

0808 808 1677
hopeagain.org.uk

Winston’s Wish
Support for grieving children and parents when someone has died.

Helpline 08088 020 021
winstonswish.org

AN ADULT SISTER REMEMBERS

When I was just one year and four months old, my brother was born and he was diagnosed seven months later with a disability. We did not know what, so I’ve grown up from infancy with a disabled sibling – I have never known any different, which I guess makes it easier.

As a child I never really noticed any disability. Christopher couldn’t talk but I had plenty of others to talk to, friends at school and family friends. We grew up in a small village which felt more like an extended family – Christopher, in turn, became more like an adopted brother to my school, everyone loved and accepted him for who he was so the early years of my life were fantastic and Christopher’s disability went very much unnoticed for me.

Moving to secondary school

At 11 I started secondary school and I had the worry of knowing new friends may not welcome and accept my brother as people had previously. As it turned out, it needn’t have been a worry as I had a brilliant group of friends who would ask questions out of intrigue, with the willingness to understand and accept Christopher as not just my brother, but as the person he was, too.

My brother’s behaviour at home, as I hit my teenage years, became more challenging. As much as I love him, when given the option, I would always opt to go to a friend’s house and stay over. Angsty, adolescent drama is truly enough for any teenager, without problems at home. We all felt the stress.

Thinking about the future

When we reached the time to start thinking about Christopher’s future and residential care this obviously affected my parents more than myself. I had my own choices to make; what college did I want to go to, what career did I want, what outfit do I wear to the party Friday night. My parents were deciding where to let their son live, to me, it was just my brother moving out. But they have always included me in choices for Christopher and I know they listen to me, as I have different concerns and priorities for him which they may not have considered. We work as a team which is how it should always be.

As someone with a disabled sibling, the worry embedded in all our minds is “what do I do once my parents are gone?” This is why you have to be involved as much as possible so that your parents are made aware of your fears as well as being aware of theirs.

There is no doubt in our minds that allowing Christopher to leave home was the best decision for him. When he returns home we make a conscious effort to make it a family time. There are still plenty more decisions to make for Christopher’s future, but as long as we remain a team and talk together, we can make sure we make the best choices for him.

Advice for brothers and sisters!

If there is any advice I could pass on to people growing up with a disabled sibling it is this. Try not to be embarrassed and worry what your new friends may think about your sibling, welcome them, and introduce them as casually as possible, and once they see you are not afraid of people meeting them, they will not be afraid to get to know them. Your friends may well be just as afraid as this could be completely unknown to them.

You will need your friends when times are tougher, and if they know your sibling as well as they can, they can truly be there to support you. They are not as involved as your parents and will not judge you for any selfish feelings you may have. I know for sure when it comes to family, especially a disabled sibling, you will feel guilty on numerous occasions because of feelings you have. Friends will get you through it!