Educating parents

Emotional reaction of parents

The birth of a child with ID can be a shock for the parents. Parents who have a child with ID are likely to experience a range of strong emotions. Some parents feel guilty when a child has ID. You should help them understand that it is not their fault and can happen to anyone. Some parents also feel ashamed to have a child with ID. Explain to them that ID is more common than they may think. They may not know other children with similar problems simply because their parents also don't want other people to know about it.

Living with a child with ID can, at times, be stressful. For example, when the child becomes ill but has difficulty in communicating their distress or describing their problems; or when the child becomes an adolescent and their behaviour changes in response to the challenges of this difficult developmental period. Caring can itself be a cause of stress and mental health problems and parents will require support, particularly during these times of stress. Despite these difficulties and challenges, most parents of a child with ID have a good quality of life. Many parents discover that their children – as well as having special needs – have special qualities that add to the joy of family life.

What parents should expect

It will take parents a long time, in some cases years, to accept that their child has significant limitations. It is important to be sensitive and tactful when you discuss these difficulties or talk about the child's future. You should be open and honest with parents in providing advice and information, but you should do this in a way that is sensitive to their fears and concerns.

In general, what can be expected will depend on the cause of the ID and its severity. When ID is moderate to severe, the child will require a lot of support. Some will be able to take care of themselves, in terms of eating for themselves, dressing and the like. Others may require support in these areas. Children with mild ID (which is the majority of cases) will be independent in the above functions. Many will be able to attend school but their teachers need to understand and be able to respond to the specific needs of these children. Children with ID are also likely to experience difficulty in making friends as they grow up and, as adults, in finding and sustaining paid employment.

Specific things parents can do to support their child

Just like typically developing children, children with ID are sensitive to the emotions of their carers. It is thus important for them to experience love from their carers (Figure 17.3). Some other concrete things that parents could do to develop their child's skills are listed in Box 17.1.