Siblings of children with a disability

When your child has a disability it affects everyone in the family, including brothers and sisters (siblings).

How a child reacts to having a sibling with a disability depends on many things, including:

  • the kind of disability
  • the age of the child
  • the age of the child with the disability
  • how the disability is managed in the family
  • the support that give each child in the family.

Brothers and sisters can have some of the same feelings of loss and grief that parents may have – it’s important that their feelings are heard and understood.

Brothers and sisters and their sibling with a disability can have fun and enjoy being together. They have the chance to learn a lot that will help them be caring, thoughtful young people. 

Issues for brothers and sisters

Having a sibling with a disability can provide many challenges for children. These can include:

  • the need for family life to change to allow for any treatment or other needs of the child with a disability
  • effects on family outings and activities
  • missing out on time with parents, and maybe feeling jealous of this
  • siblings fighting between themselves because they know they can’t fight with the child with the disability
  • feeling guilty if they complain when they are expected to take extra care of their sibling
  • being afraid of what the disability means to them – they might not realise that they can’t catch it
  • being embarrassed by their sibling’s behaviour when their friends visit
  • being asked to act as carers to help parents out – they might resent this
  • being worried and upset by their parents’ reactions to the problem – especially if parents are grieving or fighting from the stress
  • feeling pressure to succeed to make up for any limitations their sibling may have.

Things children say about having a sibling with a disability

The following issues are raised by siblings of a child with a disability, with some ideas about what you can do to help.

‘People ask what it is like to have a sibling with autism.’

Help your child learn to answer with something simple but truthful, for example:

  • ‘Normal – I have never known anything different’ or
  • ‘It can be a pain sometimes but so can my other brothers and sisters’ or
  • ‘She is my sister, not just someone with a disability’. 

‘I am afraid that when my parents die, he will be my responsibility’

Talk through this issue with your children so you can hear their fears and talk about what can be done to plan ahead.

Make plans for your child with the disability so there isn’t an unfair burden on the other children.

‘I hate asking my friends over to play because my brother always joins in and spoils the game.’

Let the siblings know that they do not always have to include your child with the disability.

Set up a place for your child with the disability to do some special activities when your other children have friends over.

‘I always feel I have to explain to my friends that it is not genetic, it is not part of me and it is not catching.’

Some conditions are genetic and some are not. Give children very clear information about the condition.

Even genetic conditions do not affect everyone in a family, including the brothers and sisters.

Get genetic counselling for brothers and sisters if needed as they grow older.

‘I can never have my party anywhere I want to because she has severe asthma and these places would make her ill.’

Children and young people should be able to have their special occasions with their friends.

Some children have two birthday parties – one for the whole family, and one just for friends. 

‘My mum and dad could never watch my sport because they had to care for my sister and she would misbehave.’

Try taking turns to watch the other children’s sport.

If it’s a special match that both parents want to watch it may be possible to take your child with a disability and watch the match from the car.

‘My sister always gets the biggest part of mum’s time and she gets away with everything because she’s got problems.’

It’s important to make time for all your children – even if it means getting respite care or help with caring for your child with the disability.

All children will test limits. It’s not helpful for any child to have unfair exceptions made for their behaviour. Children with a disability will fit in best if they are able to conform to the behaviour that’s expected of other children. 

All children need to know that you can only expect what each is capable of – which differs between them.

‘My friends sometimes call people a ‘spastic’ when they want to put them down. My brother is ‘spastic’.’

Children may need help to cope with situations where their friends may not mean to tease.

They could reply by saying what ‘spastic’ (or whatever word is used) means, and that it isn’t fair to tease people who can’t defend themselves.

Bullying is not okay and should not be tolerated. If friends make fun of a child with a disability, their sibling might say something like ‘He does have some problems, but he is really good at...’, or ‘Everyone has some problems. He is my brother and I don’t like it when you tease him.’

 ‘I am not a person in my own right – I am just Sam’s sister.’

As parents you will need to give a lot of time to your child with the disability, and will want that child to feel special. It’s important that all children in your family feel special.

Make regular special time with each of your other children.

When you talk with friends make sure to talk about the achievements of all your children.

If the care of one child is very demanding, try to get some respite care so you can spend time with your other children.

Make sure that each of your children has your support in following their own special interests.

‘I have to care for my brother a lot when my mum is working because he has cerebral palsy and is in a wheelchair, and I can’t play with my friends.’

Brothers and sisters of a child with a disability sometimes have to carry extra responsibility, and more so in single parent households. 

This responsibility can help them to be more independent and have more skills and maturity than other children of their age.

All children need time to be children, so it’s important to make sure they get this time. This might mean you have to get someone else to stand in sometimes.

Some children do not say when they feel overburdened or may feel guilty if they complain. It’s a good idea to check how they’re feeling from time to time.

‘I often feel disappointed, because when my parents plan something for me, something goes wrong for my sister and we all have to go to the hospital.’

If planning is a problem in your family because of the health needs of one of your children, try to work out an ‘in case’ plan... ‘in case’ we can’t go to the concert, ‘in case’ something goes wrong when it‘s your party.

Plans for a special outing can include the help of a special relative or friend so that the celebration doesn’t have to be missed.

‘I am always expected to be the responsible one, to give in when there is an argument.’

It’s not good for children to always get their own way and children and young people with disabilities also need to learn to consider others as well as they can.

Teach your child who has a disability that they can’t always have her own way, and to behave in ways that fit in with the rest of the family. It will make everyone’s life easier, including their own.

What you can do to support your children

Things you can do to support your children include:

  • help brothers and sisters work out how to explain the disability to their friends
  • explain how the disability was caused, because children may worry about it happening to them, or feel they caused the problem in some way
  • give your other children permission to ask questions openly and give them answers so they understand what is happening
  • listen to children’s feelings - try to find some special time for each child in the family
  • allow siblings to be involved - eg: let them help choose clothes for their brother or sister
  • encourage your other children to be proud of their sibling’s achievements and to realise the difficulties she may have had in getting there - let them know you are proud of their achievements as well
  • make sure that your child with the disability doesn’t destroy or damage your other children’s work or belongings - give them a safe place to keep things if this is a problem
  • remember that your other children need to live their own lives and not feel burdened - make plans for the future of your child with a disability
  • ask for help if you need it - so you can make time for all your children.

More information

If you have a child with a disability, you can get information and support for your other children on the following pages:

Copyright

This information was adapted from the Parent Easy Guide series © Parenting SA, Government of South Australia.

Last updated: 18 September 2017