Parents of children with intellectual disabilities face a hard task in life. Of course, like most hard tasks, the experience is joyful at times - raising children who happen to have intellectual disabilities can be extremely rewarding. Nevertheless, families may sometimes feel isolated, particularly if they have a son or daughter with an unusual disorder, like Cornelia de Lange Syndrome.

Even when they visit ‘experts’ in intellectual disabilities, such as paediatricians or psychiatrists or psychologists, families may find that they know more about their own child’s syndrome than the ‘expert’ does. That can leave families feeling frustrated and unsure where to turn for advice.

Families need sound advice. There is plenty of homespun advice to be found but what families need is information about the true facts and advice about what will really help their child. This is especially the case when their son or daughter is engaging in a challenging behaviour, such as self-injury. Research has shown that having to cope with challenging behaviour is a major stressor for families. Self-injury is probably one of the hardest behaviours to deal with. It is extremely difficult for loving families to keep a cool head, in the face of self-injury, because their instinct is to protect the child and give him or her what s/he wants, so as to get the self-injury to stop. And yet research shows this can sometimes be an unwise strategy, because it may teach the child to use self-injury like a communication device. 

This is written especially for families who are seeking to find the best information there is on self-injury in Cornelia de Lange Syndrome. It will also be helpful for parents whose children show self-injury but do not have Cornelia de Lange Syndrome. The research team involved are very well respected and they have worked closely with the Cornelia de Lange Syndrome Foundation over a period of years, collecting information and conducting research. The work is world class. Let’s hope the so-called ‘experts’ read it too.

And, lastly, a word of encouragement for the parents, who may be worrying about the effects of all this on the rest of their family. Research evidence suggests that the experience of having a child with disabilities often helps bind families together (so that divorce rates, for example, are lower in such families). Moreover, although parents often worry about the effects on other children in the family, research evidence shows that siblings survive well and are more likely to enter the caring professions, than children who do not have siblings with disabilities. So enjoy this publication and keep going, it will be worth it.

Chris Oliver

by Chris Oliver Jo Moss Jane Petty Kate Arron Jenny Sloneem Scott Hall

Page history
Last modified by Gerritjan Koekkoek on 2021/05/27 20:14
Created by Gerritjan Koekkoek on 2021/05/23 14:50



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