TELLING A TEENAGER:
SPECIFIC CONSIDERATIONS IN TALKING TO CHILDREN
AND ADOLESCENTS ABOUT HD:
1. As the illness progresses, symptoms will become more noticeable and
elicit social reactions to visible features of the disease.
The most important principle here is, no matter how painful
it is for the adults in
the family to acknowledge that such public reaction might exist, to never
deny the possibility that kids observed a social reaction you missed.
Rather than deny the stigma associated with Huntington's, have a frank
discussion about how people tend to fear any "different behavior" which they
do not understand.
Make a plan about who you'll share the diagnosis with and who
you might not; enlisting the support of teachers and special coaches is probably a good idea, telling
the stranger on the street is not.
2. As mood swings become more accentuated, and the affected family
member's insight decreases, children may feel nothing they do is ever right or enough to please.
Be alert to signs of discouragement or
symptoms of anxiety (including stomach and headaches) and be prepared
to tackle the topic of personality changes associated
3. Individuals with HD tend to overestimate their capacities, physical
as well as mental.
As difficult as it may be to tell them they are no longer
able to parent alone, building in alter-natives is less painful than dealing with the aftermath
of well-intended, but erratic,parenting.
4. Never ask an older child to act as chaperone for a parent with HD
The burden or responsibility and split loyalties are just too much for any
child or teenager to bear.
5. Waiting until age 18 to find out whether or not you inherited Huntington's
can be a tremendous stress and constant worry for your children.
If they ask, it's important to answer truthfully about this
possibility and give
them the opportunity to discuss their fears and nightmares with a trained counselor or therapist.
Even if children are functioning well at school, chances are
they are bottling up a lot of these fears and anxieties, afraid of adding to your burden and sadness
if they share them.