Working with Children and Siblings


Neuronopathic Gaucher's News Contents
Gaucher's News Contents


Sue Wright is a dance therapist and trainee psychotherapist who has worked for the past two years with a little girl, now aged five years old, who has Type 3 Gaucher disease. By using play the child has been able to express her puzzlement and feelings about having this disease.


One of the difficulties for children is to make sense of being ill,' stressed Ms Wright. 'And like adults, they will ask in their own way: ''why me?'' Children under five years old still have difficulties understanding cause and effect and thus often think they are the cause of things going wrong.

They may imagine that they have 'done something bad to become ill or fail to comprehend why they have to have treatment again and again - they have had it once, so why does this not make it all better?

In order to deal with painful feelings children characteristically bury them or 'split them off'. For example their 'little', vulnerable side may get spilt off. Thus, whilst they take on a 'big-child' role, they often perceive other children or toys as the babies. Now and then when under stress or tired we see signs of the less able to cope, 'little-child-self'.

As adults we have an important role in helping to give words to children's feelings and speaking openly about their illness or disability. This may include acknowledging the difficulties and disappointments it brings.

'It may also involve sharing some of the adults' own feelings. This role model can help children to express and to contain difficult emotions.

Brothers and sisters of a child with Gaucher disease also need a space to talk about their anxieties. They may wonder ''why them and not me?'' or feel some blame especially if - quite naturally - they resented the arrival of a younger sibling: ''Did my jealousy make something go wrong?''

They may also feel angry that their brother or sister gets so much attention but, because of guilt, find it hard to be normally cross with him or her. It is therefore important that they have time to share their feelings - whether of anger, frustration, sadness or anxiety with a listening adult.

As a neutral person, my role with these children is to help the child to express and understand his or her feelings; to communicate that it is natural to have such feelings and to provide a space for grieving some of the losses.


Neuronopathic Gaucher's News Contents
Gaucher's News Contents

Source: Gaucher's News February 2000. © Copyright Gauchers Association 2000