» Diagnosis

Telling a child they have the syndrome

As children who have disabilities begin to become aware of the differences between themselves and their peers and siblings, inevitably they begin to ask questions about why they can or cannot do certain things. Claire Gibson from the UK’s Contact A Family takes a look at how caregivers can deal with that issue.

A question of when to answer the fears

CdLS Foundation Medical Director, Dr. Laird Jackson, faced the most challenging of presentations at the Chester conference.

He addressed the issue of Why do CdLS children die? He then agreed to pen this article to share the information with others who could not attend the conference.

Many parents face a dilemma as to how to approach the issue of disability with an affected child. When to tell? How to explain it? And fears about the child’s reaction.

All children are different and all families are different. What may work for some families may not work for others. Some families will have been open about their child’s disability right from the beginning; other children may not be

diagnosed until much later. There are no right or wrong answers – just what feels right for you and your family. But there are some things that have worked.

When a child begins to ask questions try and make time to give them answers or be honest if you don’t know. Only give as much information as the child can take on board for their age and ability. It might be worth giving little bits of information over time and reassuring them they can ask anything else as it crops up.

Try to give a positive message. Some children may be upset to find out they have a disability or special need and it may knock their self esteem. It is always worth emphasising what they CAN do.

Make use of outside help. Health professionals can help explain the condition and there is now a useful array of books available from the local libraries that can be used.

Try not to assume what the child knows. Often children pick up a lot of information that they overhear from adults, they may see the specialist literature coming to your home, they may have heard the many medical professionals talking to you at different hospital appointments.

There may be gaps in what they know that will cause them concern. Always check with the child what information they have.

Information is important for all of us. If a child can learn the name of their condition then it will help them explain. They should know that people such as friends, teachers and others may not have heard of this condition because of its rarity.

One mother told me that her child did not relate well to books as a way of explaining his difficulties so she wrote her own little basic book with pictures about what he was good at and some of the things he is not so good at. He is very proud of that book.

Reaching Out newsletter
January 2001