Siblings

LAST UPDATED: 28/06/13

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This info pack has been put together with the help of Sibs, the UK charity for siblings of disabled people. You can talk to a parenting advisor from Sibs for free one-to-one advice on the Netbuddy forum.

Disability affects the whole family.  Siblings – like parents – need support to help them adjust to their disabled brothers’ and sisters’ needs. They need time and attention from their parents, they need help to understand their sibling's disability, and they need to be included in the things their disabled brothers and sisters are doing. Siblings also need help with a whole range of feelings they may be experiencing.

Information

Siblings need information. Sometimes parents try to protect siblings from getting too much information as they think it will upset them. Most siblings say they prefer to know the truth and find out from a parent, rather than being told things at school. Siblings can feel that everyone else knows what’s going on except them. Many siblings worry that they might catch the disability, like catching flu, as they don’t understand how it happened.

Time and attention

Siblings need time and attention with parents. Parents of disabled children already have a lot of to do, sometimes without much sleep or support. Giving attention to siblings may seem like another task in a family that is very busy. However, giving attention doesn’t have to take lots of time.  It is better to have a parent’s full attention for a short amount of time, than a lot of time with distractions. This helps siblings feel loved and that they matter too, and it helps to improve sibling behaviour.

Siblings want to know about and to have a say in things about their brother or sister. It is important that siblings of people with a learning disability feel included from a young age. They are likely to have a supportive role in their brother or sister’s life in adulthood and being included from childhood helps them feel confident that they will be listened to.

Feelings

Siblings have a whole mixture of feelings, for example they may feel:

• Proud about learning a new skill, such as sign language
• Annoyed about having lots of people visiting their home
• Happy spending time with their brother or sister
• Lonely when their brother or sister is in hospital
• Jealous of their brother or sister getting lots of attention
• Embarrassed when other people stare
• Excited about doing things together as a family
• Fed up with a brother or sister’s moods or behaviour
• Pleased to be able to teach a brother or sister something
• Sad about a brother or sister being very ill
• Guilty about getting angry with a brother or sister
• Worried about the future

Siblings need support with their feelings. They need permission to have negative feelings about their brother or sister, which are a natural part of all sibling relationships. This helps them to feel less isolated. Siblings need encouragement to communicate their feelings through words rather than behaviour, for example, a sibling can say they are jealous rather than hit another child to get your attention.

Support networks

Siblings need support networks. Whilst parents play a key role in supporting siblings, there are others who can offer useful and invaluable support too. It really helps siblings to know that others are able and willing to support them when they need it. It helps them feel less isolated and gives them opportunities to learn new ideas for coping with their problems. Their support network can include their friends, relatives, staff in school and in other services used by families, and sibling groups.

If siblings’ needs are overlooked, they may become clingy, have difficult behaviour or feel resentful of their disabled brother or sister. Parents can support siblings, whether they are toddlers or teenagers, with the tips below.

Top Tips

Tell siblings

Tweet

Give siblings information about their brother or sister’s diagnosis.  Start early, be honest and open, and update them regularly.

Make a scrapbook

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With young siblings make a scrapbook about your family with pages for each person, including information about the disability or condition.

Question box

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Leave a box with a pen available for siblings to write down questions they have about their disabled brother or sister. Tell them you can ask the paediatrician or consultant for answers at your next appointment.

Activity jar

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Help your sibling child write or draw fun activities on small pieces of paper. They need to be activities that last for only 10 minutes and for you and your sibling child to do together.  Put them in a small jar with a lid. When you have a 10 minute space, ask your sibling child to choose an activity from the jar and do it together.

Send a text

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Let siblings know you are thinking about them by sending a nice text during the day.

Family fun

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Do some fun and silly things at home together that you all laugh at. Watch some comedies, play chase indoors or make silly hats to wear.

Plan for hospital stays

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Make a chart with the days when you and your disabled child will be away. For each day talk together about who your sibling child will stay with, when they will see you and when they can visit their brother or sister. Write these down on the chart and put it on the fridge door.

Hand of support

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Draw around your sibling child’s hand and on each finger help them write the name of someone they can talk to if they need to, such as a teacher, friend or relative. Let your child know that it’s OK for them to talk to other people if needed. 

Good and bad

Tweet

Talk with siblings about the good things about having a disabled brother or sister, and the things that are difficult too.

Worries

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Decorate a small box with your sibling child. Put a small pen and pieces of paper inside.  Encourage them to write down or draw their worries. These are for you to read and talk about later. This is particularly helpful if children struggle to talk about difficult feelings or if they want to talk to you at a busy time. Writing their worries in the worry box ensures they are acknowledged and not forgotten.

Count siblings in

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Include siblings in some of the meetings and appointments that you attend for your disabled child.  Introduce them to professionals who visit your home and ask for things to be explained to them.

Peer support

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Siblings like to meet other siblings and to know that they are not the only one with a disabled brother or sister.  Find out if there is a sibling group or workshop in your area. If your child uses a hospice, most hospices have a sibling support service.

Remember they are not carers

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Treat the child who does not have a disability as a child, not just as another adult carer. Do not demand or expect a child to take on responsibilities for which he or she is unprepared

Celebrate achievements

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Celebrate their achievements, even the small ones

Make time

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Make regular time for them - have a special time for him or her each day

Choice and involvement

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Provide siblings with choices and include them in decision-making. Discuss family matters with your children, especially if it affects them personally. Ask for and consider their opinions and advice

Support Organisations

Sibs

The UK charity for siblings of disabled children and adults.  Provides information, support and training to siblings, parents and professionals across the UK. www.sibs.org.uk

There is a list of local siblings groups on the Sibs website:  List of local siblings groups

Barnado’s

Barnado's run projects to support young carers. While many of young carers are caring for parents the charity also offers support to siblings of children with learning disabilities. www.barnardos.org.uk

Young Carers

Young Carers provide support and advice for the siblings of children with a range of disabilities.  http://www.youngcarers.net

Kids

Kids provide support for siblings of children with learning disabilities. Opportunities to have fun and make new friends outside the family home.  www.kids.org.uk

MENCAP

Mencap has a fact sheet for siblings, called Useful information for siblings of children with learning disabilities www.mencap.org.uk

Contact A Family

Advice for siblings. Helpline 0808 808 3555. Contact a Family siblings guide

National Autistic Society helpline

The National Autistic Society provides advice to siblings of children with autism via their helpline: 0808 800 4104

Winstons Wish

Winstons Wish is a leading child bereavement charity.  There is a dedicated section for young people on their website. http://www.winstonswish.org.uk/

Web Resources

SibsKids is an online support project for siblings of children with learning disabilities. A chance to discuss siblings as well as music, friends and school issues. www.siblingsupport.org

Sibnet

Similar to Sibkids, Sibnet is for young adult siblings. There’s a yahoo group and a Facebook page. www.siblingsupport.org

We the Siblings

Stories and first-person accounts posted online by siblings of children with special needs. www.angelfire.com

Bullying

Kidscape

Information and advice for victims of bullying. www.kidscape.org.uk

Beat Bullying

Siblings of children with learning disabilities may be bullied. This organisation provides advice and support - www.beatbullying.org

Young Minds

Charity working for improving the emotional wellbeing and mental health of young people.  www.youngminds.org.uk

Recreational

Over the Wall

Over the Wall run camps for siblings of those affected by serious disorders.  www.otw.org.uk

Buddies

Buddies provides short breaks for people with learning disabilities and also provides short breaks for their siblings. dimensions-buddies.org

Essex Face2Face Scheme

Runs projects for people with learning disabilities including Kidzspace, a special group for siblings of children with learning disabilities which allows them to participate in activities away from the family. 

www.scope.org.uk

Dance 21

Dance 21 is a dance group in Essex for children with Down’s Syndrome and their siblings. 

www.dance21.co.uk

Books for preschoolers