| 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 book 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 book and keep going, it will
be worth it.
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