There are some things to remember not to do when discussing HD with children. First and foremost, the parent should never lie. Lying takes a lot of energy and it can become complicated to lie about certain pieces of information for extended periods of time. A lie is difficult to remember and ever-changing explanations lead to disbelief and mistrust. Honesty fosters trust and a sense of security, both of which can enable open discussion and make coping with HD as a family much more manageable.
The scientific and medical information related to HD is complicated and will be too difficult for small children to understand. Therefore, when talking to young children, the parent must be conscious not to overburden them with too much medical information after explaining the diagnosis in basic terms. If the parent is trying to answer a child's question, it is a good idea for him or her to ask if the child understands or has additional questions. If the child wants more information, then the parent should elaborate.
It is important for the parent not to make promises that cannot be kept, thus giving the child a sense of false hope that may someday be devastating to the child. For example, if the child has not been tested for HD, the parent cannot promise that the child will never develop symptoms of this disease. The parent should inform the child that such a test is possible and could be considered after age 18.
Parents should not be afraid to say that they don't know the answer to a question. Not knowing may mean that the individual parent doesn't have the answer to a question but can find somebody who does. It may also mean that nobody knows the answer to the question and this is also perfectly okay. For example, no one knows exactly when there will be a cure for HD. We all hope that it is soon, but no one knows at least for now and the child is not alone in waiting for an answer.
Last Modified: 05/22/2009
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