Siblings

Siblings are likely to have the longest relationship of anyone with their brother or sister with Down syndrome. Siblings frequently also show unique insight – they may, for example, have less difficulty than others in understanding their sibling’s speech, recognise an underlying cause of difficult behaviour or see potential where others have failed to recognise it. 

Many parents are initially anxious regarding the effect that having a brother or sister with Down syndrome may have on other children in their family. The fact that a brother or sister has an intellectual disability naturally impacts on the sibling relationship. However, contrary to many parent’s anxieties, in studies siblings have generally reported more positive aspects of having a brother or sister with Down syndrome than negative aspects. 

This is not to say that siblings including an individual with Down syndrome always relate positively, or that young people do not have any concerns or difficulties in relation to their sibling who has Down syndrome. But a sibling having Down syndrome is just one of a vast array of factors which impact on a sibling relationship, factors ranging from cultural and family practices to significant events such as parent separation or a death in the family. Parents should keep in mind too that sibling relationships can be a challenge some, if not most, of the time in every family. 

Young people will tend to mirror the attitudes of the adults in the family, so the attitude of parents to the disability will be the most significant influence on the way in which a sibling views their brother or sister with Down syndrome. Other children will tend also to take their cue from the attitude shown by the siblings to their brother or sister with Down syndrome. 

Siblings provide the range of benefits for a child with Down syndrome that they can in any family – language and role model, childhood companion and later social coach and mentor. Siblings in turn gain widened perspective from the experience of having a brother or sister with Down syndrome. 

All sibling relationships go through different stages as children grow and many teenagers are likely to experience a phase in which their sibling causes them embarrassment – parents need to be careful to handle this sensitively and it usually passes with increases in maturity. 

Overall, children who have a sibling with Down syndrome, as a group, do not generally have difficulty adjusting to this. Growing up with a sibling with Down syndrome, whilst it will be subject to all the trials and tribulations of any sibling situation, is viewed by the majority of young people who do it as a positive experience. 

Information about siblings

 Publications marked with this symbol are available for DSV members to borrow from the DSV Resource Library.

Down Syndrome Victoria (2009) Supporting siblings
Useful Points to help parents support siblings of a child with Down syndrome.

Down Syndrome Victoria (2009) Talking to siblings about Down syndrome
Points for parents to keep in mind when explaining and talking about Down syndrome with children.

Down Syndrome Victoria (2009) What to say to children about Down syndrome
Examples to help parents formulate the right thing to say to brothers and sisters and other children.

Lloyd, Mary (2006) 'Siblings and understanding disability' NoticeBoard, Magazine of the Association for Children with a Disability
Excellent article discussing sibling understanding of disability at a range of ages and advice for parents on providing appropriate information to siblings.

Down’s Syndrome Association (UK) Information sheet – Siblings
Useful detailed information about sibling reactions and issues, for parents, adult siblings and teenagers, includes further references. 

The Sibling Support Project What siblings would like parents and service providers to know
Interesting and thought provoking summary of adult siblings’ own themes, considerations and recommendations, from a US survey.

Association for Children with a Disability (2003) Supporting Siblings. When a brother or sister has a disability or chronic illness
Addresses many matters concerning siblings comprehensively and with lots of practical advice. Covers a wide spectrum of disability and chronic illness – not all the issues covered will be relevant to families.

The T.I.M.E. (This Is Me Everybody) Out Sibling Program provides after school, weekend and school holiday opportunities for siblings of children with a disability - run by Melbourne City Mission.

Siblings Playing Listening And Talking (S.P.L.A.T.) – Camps run by Moira

Siblings in Sync – Arts Centre Melbourne - Siblings in Sync is an award-winning, two-session program for children and young people with special needs and their siblings.

Susan P Levine (2002) ‘The sibling relationship: attending to the needs of other children in the family’ in William Cohen, Lynn Nadel & Myra Madnick (eds) Down Syndrome: Visions for the 21st Century pp163-172 (Wiley-Liss)
Informative discussion of the issues surrounding siblings with suggestions for dealing with them.

Donald J Meyer (ed) (1997) Views from our shoes : growing up with a brother or sister with special needs (Woodbine House)
Extracts written by siblings about their brothers and sisters and living with a family member with a disability.

Rachel Simon (2002) Riding the bus with my sister : a true life journey (Penguin)
Inspiring novel about an adult sibling’s journey to acceptance and understanding of her sister with an intellectual disability.

For older siblings

Donald J Meyer (ed) (2004) The Sibling Slam Book: What It's Really Like to Have a Brother or Sister with Special Needs (Woodbine House)
“A brutally honest, non-PC look at the lives, experiences, and opinions of siblings without disabilities.”

Louise Spilsbury What does it mean to have Down’s syndrome?
Good basic information about Down syndrome for older children or adults wanting simplified information.

Mary Bowman-Kruhm Everything you need to know about Down syndrome
Good basic information about Down syndrome for older children or adults wanting simplified information.

Jenny Bryan Living with Down's syndrome
Honest and realistic information for helping older primary aged and early teenage children to understand what it means to have Down syndrome.

For younger siblings

Daniel’s Book by Michael Wilson
(available from Down Syndrome Association of Western Australia http://www.dsawa.asn.au/)
A simple picture reading book written by the 9 year old sibling of a boy with Down syndrome. Good model for making your own family picture and simple reading books.

We’ll paint the octopus red by Stephanie Stuve-Bodeen
Picture book for young children which explains, through the eyes of his sister, that things are different but the same for the new baby with Down syndrome.

I Can, Can You? Marjorie W Pitzer
Board book for very young children full of photographs of young children with Down syndrome doing the things that young children do.

My Friend Isabelle Eliza Woolson
Lovely book for young children that presents acceptance of differences through friendship of children.

Our brother has Down syndrome by Shelly, Jasmine and Taro Cairo
Photographs and a simple text introduce a family in which one child has Down syndrome.

Siblings Australia Inc 

Siblings Australia is an Adelaide-based organisation which supports people who have a sibling with special needs, ph: (08) 8161 6737

The Sibling Support Project

US organisation supporting siblings of people who have special health, developmental, or mental health concerns

Association for Children with a Disability

ACD offers comprehensive information and services for siblings including Your Shout, a website and chat space by and for adolescents who have a brother or sister with a disability or chronic illness.