Giving siblings information about disability

Parents often ask when they should give siblings information, and how much to give them. Parents can worry that giving information to siblings will make them anxious or will be a burden to them. We usually find that the opposite is the case: Siblings usually feel less anxious if they are kept informed about what is going on, and if they are not given factual information they may make up their own incorrect story about what is happening.

Of course the age of the sibling has a big bearing on how much information to give. Think about it like sex education - give matter of fact information with less detail to young children, and more detailed information and discussion of issues with older children. In children under 7 years, you will need to gauge how ready they are for information by the questions they ask. Always answer questions honestly and simply. Even young children will detect if you are not being honest and will lose trust in you as a result. For many parents, the hardest thing about talking about the disability/illness is their own uncomfortable feelings that arise when they do so. Young children won't attach these intense emotions to talking about disability if parents are comfortable with it. When children get to about 7 years, they are very likely to be asked questions at school about their brother or sister and this will increase their need for information.

Some ways to get talking about disability with siblings

With very young children, an easy way to start discussions is by looking at a picture book (about a disabled child) together
Ask the sibling what he or she knows about the disability or illness – you may find that he or she is well informed or that they need more accurate and age appropriate information. Many siblings will have the correct name e.g. autism but not be able to describe what that means
Ask the sibling to write down a list of questions for you about the disability or illness for you to answer.
With older children, you can go on the internet together and look at the information on the website for that particular condition – some siblings will do this anyway, however it is better if you can be there to discuss things with him or her. Make sure it is a reputable site and the medical information is accurate. A good starting point for this is Contact a Family's directory of specific conditions http://www.cafamily.org.uk/dirworks.html Read the information yourself first before you show it to your child.
Next time you have a hospital, clinic, or therapy appointment ask the sibling in advance if he or she has any questions to ask this person. You may want to invite the sibling along to ask these questions him or herself, or you can offer to do that on his or her behalf. (The sibling can write them down for you)
Have a question box with slips of paper and a pen nearby. Tell siblings tthat whenever they have a question about their brother or sister's condition, they can put it in the box. Then you will find out the answers for them and share the information with them later on the day/week

If a brother or sister has a life limiting condition

Find a clear and simple explanation of your child's condition that will be easily understood by the sibling child. You may find that you need to explain things to a sibling many times. Explain physical changes to siblings as they are expected or as they happen. Encourage questions - this will be hard for you but helpful for your child. Open communication about prognosis leads to better long term adjustment for siblings
Make sure that your child hears about the condition from you and not from other people, most especially the fact that their brother or sister is going to die in childhood.
Be honest and matter of fact with your child when he or she asks you questions about his or her brother or sister. It is important for your relationship with your child that he or she feels able to trust what you say.
False reassurance only makes young children feel insecure. They need to be able to believe you.
When you are talking to adults about your son or daughter who is ill, make sure that you include your child in the conversation. If you do not want your child to hear, talk about it at another time rather than whispering in the same room.
Let the sibling know that he or she is healthy and well, and that they will not 'catch' the condition. If they are still concerned ask a doctor or nurse to explain this to your child.

Do not make siblings keep 'secrets' about a condition

Think through the implications of a sibling knowing more about the disability or illness than their brother or sister.

Siblings worry about what to do say if their brother or sister asks them if they have an illness or disability. In many cases, especially where a brother or sister has learning difficulties, it is often a fact that siblings will know and understand more about their brother or sister's disability. Sometimes though, the disabled brother or sister is capable of understanding the condition and its prognosis, but parents have felt that it is not OK to tell them about it – maybe because they feel they are too young or because they feel that the child would find it too upsetting.

The sibling however may know a lot about the condition, and find that a brother or sister is asking for information, but the sibling has been told to keep it from the other child. There are a number of issues to think about here:

If the disabled child is asking for information this may be the time for the parent to give more information to him or her. He or she has a right to know about what is happening to them.
It is very difficult for a sibling to have to keep 'secrets' from another child – this feels like too great a responsibility. The sibling may end up worrying in case their friend or another relative says something to their brother or sister.
Not talking about the disability or condition in the family only stigmatises it further, and makes the sibling feel that disability is a taboo subject.
It is hard to talk to children about difficult issues – especially for parents. However children are usually much more matter of fact about things that adults find hard. By being open from the beginning you will not have to continually worry about your child finding something out.