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Siblings

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.

This blog has been put together with the help of Sibs, the UK charity for siblings of disabled people. 


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.

On the Beach

Top Tips

Tell siblings

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

Make a scrapbook

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

Question box

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

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

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

Family fun

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

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

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

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

Worries

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

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

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

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

Celebrate their achievements, even the small ones.

Make time

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

Choice and involvement

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.

Adult Siblings

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. Visit the YoungSibs website for children and young people who have disabled brothers and sisters https://www.youngsibs.org.uk.


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.

Carers Trust
Carers Trust provide support and advice for the siblings of children with a range of disabilities. https://carers.org/about-us/about-young-carers.
 

Kids

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

MENCAP
Mencap has an online community for siblings in their FamilyHub. https://community.mencap.org.uk/t/finding-siblings/421.

Contact A Family
Help and advice for families supporting siblings of disabled children. https://contact.org.uk/advice-and-support/your-child-your-family/family-life/supporting-siblings/.


National Autistic Society helpline
The National Autistic Society has a range of information for siblings of all ages: https://www.autism.org.uk/about/family-life/siblings.aspx.


Winstons Wish

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

 

Web Resources

SibNet
SibsNet 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. https://www.siblingsupport.org
 

We the Siblings
Stories and first-person accounts posted online by siblings of children with special needs. http://www.angelfire.com/bc/autism/index.html

Bullying

Kidscape

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

Young Minds

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

Recreation


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

Brothers

Just Because
Rebecca Elliott
, Lion Hudson Plc; 1st edition (20 Aug 2010)
 
About the close bond between an young brother and his disabled sister, and the things they love playing and doing together. His sister has a wheelchair.


Sometimes
Rebecca Elliott
, Lion Hudson Plc; 1st edition (1 May 2011)

About the same children in Just Because. The sibling talks about his feelings and how they help each other when his sister has to have a hospital stay.



Susan Laughs
Jeanne Willis and Tony Ross, 
Red Fox Picture Books (2001)

A sibling and his disabled sister take part in everyday activities. It is useful for starting to talk about disability with a young sibling.



My Brother John
Joanne Zellweger
, Squeeze Marketing Limited (30 Jun 2008)

A sister talks about her brother who is deaf and who has a hearing aid and a cochlear implant. It is about everyday activities and the sibling also explains her brother's deafness. 



We'll Paint the Octopus Red
Stephanie Stuve-Bodeen
, Woodbine House Inc.,U.S. (1 Oct 1998)

A young sister looks forward to doing things with her new baby brother when he is born. When her dad tells her that her brother has Down's syndrome children, she worries about not being able to do the things she hoped to do. They find new ways to have family fun.



Our brother has Down's Syndrome
Shelley Cairo, Annick Press Ltd (7 Aug 2000)

Two young sisters talk about having a brother, a toddler, who has Down's Syndrome. There are family photos on each page and it explains Down's Syndrome.


Books for Primary school ages

Mother and Children






My Brother is Autistic
Jennifer Moore-Mallinos
, Barron's Educational Series Inc.,U.S (1 Nov 2008)


My Brother John
Joanne Zellweger
, Squeeze Marketing Limited (30 Jun 2008)


We'll Paint the Octopus Red
Stephanie Stuve-Bodeen
, Woodbine House Inc.,U.S. (1 ct 1998)


Our brother has Downs Syndrome
Shelley Cairo, 
Annick Press Ltd (7 Aug 2000)


When Jeremy Jones stomach stopped working
Anne E Reckling


Just Because
Rebecca Elliott
, Lion Hudson Plc; 1st edition (20 Aug 2010)


Sometimes
Rebecca Elliot
, Lion Hudson Plc; 1st edition (20 May 2011)


My Sister is Different
Sarah Tamsin Hunter, 
National Autistic Society (6 Jun 2006)


My Brother is Different
Louise Gorrod, 
National Autistic Society (1 Jan 2003)


My Special Brother Rory
Ellie Fairfoot and Jenny Mayne
, National Autistic Society (1 Jan 2004)


Looking after Louis
Lesley Ely and Polly Dunbar, 
Frances Lincoln Children's Books; New edition edition (1 Sep 2005)


Brotherly Feelings
Sam Frender and Robin, 
Jessica Kingsley Publishers; 1st Pbk. Ed edition (31 Jan 2007)


Me and my deaf brother and sister
National Deaf Childrens Society


My Sister Annie
Bill Dodds, 
Boyds Mills Pr (January 1997)


Benny The Bear Series
Association for Spina Bifida and Hydrocaphalus


Russell and Millie Series
Association for Spina Bifida and Hydrocaphalus


Different Croaks for Different Folks
Midori Ochiai
, Jessica Kingsley Publishers (23 Dec 2005)


The Other Kid
Lorraine Donlon, 
Llumina Press (July 2007)


Special Brothers and Sisters
Annette Hames and Monica McCaffrey
, Jessica Kingsley Publishers; 1st American Pbk. Ed edition (27 July 2005)


Views From Our Shoes
Donald Meyer, 
Woodbine House Inc.,U.S. (24 Nov 1997)


Whats up with Ben? Medikidz explain Autism
Medikidz Publishing


Whats up with Beth? Medikidz explain Cystic Fibrosis
Medikidz Publishing


Whats up with Richard? Medikidz explain Leukaemia
Medikidz Publishing


Whats up with Rachel ? Medikidz explain Brain Tumours
Medikidz Publishing


Whats up with James? Medikidz explain Depression
Medikidz Publishing


Whats up with Wendy? Medikidz explain Epilepsy
Medikidz Publishing


All Ages

Brothers Reading
SEN Books
Website offering a range of books for the siblings of children with special needs - http://www.senbooks.co.uk/search/sibling
 

Written by: The JWeb Team and Sibs, the UK charity for siblings of disabled people.