What is the best way to discuss HD with young children if a parent has HD or is at risk?

 Ask the Expert
H.Taylor Butler, LCSW, Social Worker, HDSA Center of Excellence. Emory University, Atlanta, GA, USA

 We begin educating our children at birth by transmitting attitudes on all topics in subtle ways. There are some basic principles to guide parents when discussing difficult topics with their children.

HONESTY: It is extremely important to be open and honest. Children know when a parent is not telling the truth or is anxious and will then become suspicious and probably stop listening.

AGE APPROPRIATE: The information presented should be age appropriate in language and in concepts the child can understand.

SMALL DOSES: We learn progressively and information is best absorbed in small increments over time. When we listen carefully, children let us know when they’ve heard enough and will return for more at a later time.

COMFORT: Do all that is necessary to talk in a calm and comfortable manner. Perhaps discuss your plan with an HD health professional, family member or friend first. Many find it is helpful to role-play such situations prior to meeting with the child. Support groups are excellent places for such practice.

Sharing information about HD and how it affects individuals may be the most difficult topic for the HD family. It seems advisable to discuss less difficult topics first.

Children need to know and understand the entire history of their family in order to have a sense of pride and belonging. Perhaps begin by discussing the family’s geographical history then move on to the positive physical and behavioural characteristics. Also, many families use certain names in every generation so preparing a family tree would be helpful and could be used again in later discussions.

Some attitudes and beliefs important to transmit to children about HD are:

*Acceptance and respect for the members of the family with HD.

*Optimism and hope. Extensive research is in progress and a treatment and hopefully, a cure, will be found.

*No one is at fault for HD, it is not a punishment.

*You never know who in the family will develop HD.

*Admit that HD is confusing and difficult to understand.

*Parents have no control over the transmission of the gene and certainly never intend for it to occur.

 I recently asked two questions of the HD Support Group at the HDSA Center of Excellence at Emory University. Should children be told about HD? The answer was a unanimous YES. When discussion on HD is avoided parents convey that HD is something about which there should be some embarrassment and shame. The group felt that difficulties arise when this important information is withheld. Children need to hear about HD from their parents and not by accident or from someone else.

My second question: At what age should children be told? There was agreement that children  as young as three or four can begin hearing about HD and that by age eight are ready for full, open discussion.

 Acknowledgement:  “The Marker”, Vol. 12, no 3, Fall/Winter 1999, Huntington’s Disease Society of America.