Print: Talking To Children About HD - Frequently Asked Questions & Answers
Talking To Children About Huntington’s Disease
Frequently Asked Questions
The HDSA Wisconsin chapter's experienced counselor, Jean Morack, receives many calls in a week's time
about Huntington's Disease. As an aid to our website visitors, this section gives answers to the most frequently asked questions
we receive.
Q.
Should
I tell my children about HD in our family?
A.
In almost
all cases the answer is yes. But do it in an age-appropriate manner. When discussion is avoided, parents convey that HD is
something about which there should be embarrassment and shame. Children need to hear about HD from their parent and not by
accident or from someone else. Children who haven't been told about HD may think that an affected parent's behavior is due
to alcoholism or drug use, or that the parent doesn't love them.
Q.
When should
I tell my children about HD in our family?
A.
Children
as young as three or four can be told about HD. It is particularly important to tell children about the disease if a parent
or other loved one is showing symptoms. This prevents the children from reaching the wrong conclusions about this person's
behavior. It also gives the children an explanation that they can share with their friends when they comment or tease them
about this person's behavior.
Q.
How do
I go about telling my children about HD in our family?
A.
There are
some basic principles to guide parents when discussing difficult topics like HD with their children.
: 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.
: 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.
: Do all that is necessary to talk in calm
and comfortable manner. Perhaps discuss your plan with an HD health care 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 whole 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 behavioral 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:
for 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.
HD is not a punishment from God.
? Let them
know that there is a lot of research going on for a cure. They have a good chance of not even having the gene that causes
HD. Admit that HD is confusing, but share your optimism for the future.
. Parents
have no control over the transmission of the gene and certainly never intended for it to occur.
Source: HDSA Wisconsin Chapter
Website: www.hdsa-wi.org
