What shall we say to our child and when?
What you say will of course depend on your child's age and level of understanding. What is important is to try and ensure that what you say is truthful and makes sense to your child.
Unless they are very young, most children will quickly realise there is a problem. They know they are attending hospital and may see their parents upset. It is important therefore to explain.
Some parents say things like 'the doctors have found out that some of your muscles are rather weak. They can't make them better at the moment, but lots of people are working very hard to see what they can do to help'. This is a good starting point and allows you to 'drip feed' information over time.
Avoid denying there is a problem, or promising that it can be made better. If your child asks if he/she will get weaker, then be honest, but also stress that things can be done to help him/her continue doing a whole range of activities. Your child needs to trust you and being honest will, in the longer term, help to maintain a good relationship. Remember, children are concerned with today. They are unlikely to take a long term view.
Some parents may find it very difficult to talk to their child while they are trying to come to terms with the diagnosis themselves.
For children between the ages of about six and nine, we have produced a booklet called Everybody's Different, Nobody's Perfect. Other charities may have further literature for children - please see partner charities for contact details. As a parent, you will need to judge if and when to use these booklets.
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