I received the following message April 29, 2002 I'd like to share. You may want
to talk to your parents, chapters, etc about getting these booklets.
I am a child psychologist and also have Huntington's Disease in my family. I have
developed two booklets that help young people deal with their feelings about HD.
These booklets are designed for two age groups (5-10 and 11-18).
They are designed to be used with an adult or in a support group with an adult
TALKING WITH CHILDREN ABOUT
HUNTINGTON DISEASE IN THE FAMILY
by Arlette Lefebvre, MD, O.On, CM
As a child psychiatrist, I have been working with disabilities and/or
chronic illness for the past 25 years. My clinical research has focused
on developing health education tools and strategies to overcome
stigma. On a personal level, I grew up with a brother with Down
syndrome, and recently watched my father slowly lose his brilliant
mind to Alzheimer's. Perhaps this is why I am particular aware of the
complexities involved in telling children about Huntington's in the family.
GENERAL PRINCIPLES FOR HELPING CHILDREN UNDERSTAND
A PARENT'S CHRONIC ILLNESS:
1. Truth is better than deceit, and honesty fosters trust and a sense
of security. In other words, never evade your child's questions and
never lie when you answer. However.......
2. Before jumping in to answer a question, always take time to clarify
what the question was really about. The question, "Is Daddy OK??",
coming from a young child whose father with HD tripped and fell down
the stairs, probably just meant, "Is Daddy hurting? Does he need help?"
3. There may not be a need to introduce "the whole truth". It is often
more humane and effective to share the truth in "installments", or
easier-to-swallow bites. For instance, when asked "Can doctors make
Mommy better?", it's perfectly OK to make a distinction between
symptom relief and cure.
Many children of parents with HD will have experienced Chicken Pox by
the time a parent starts exhibiting HD signs and symptoms, so you could
tell them that the medications is helping Mom control her movements, the
same way that "the pink Calamine lotion controlled your itchiness when
you had Chicken Pox"; but you can then add that neither medication can
prevent or "cure" the illness.
4. Be aware of your child's developmental level and how this affects his/her
reasoning and understanding before launching into a complex explanation
about the illness and its causation. Abstract thinking does not develop until
adolescence; before then, abstract discussions about genetics will only go
over a child's head and confuse them.
TELLING A PRESCHOOLER:
- Use language your child knows.
- Keep explanations very short.
- Use dolls and puppets to illustrate the hospital visit.
- Forewarn the child of anticipated changes in the affected
parent's role. For instance, "Daddy has a serious sickness,
that's why he's been jumpy and dropping things lately. The
doctors are trying to help him with this sickness, but he
won't be strong enough to play ball with you for a while."
TELLING A SCHOOL-AGED CHILD:
- Give the child the name of the disease. Write it down.
- Emphasize that nothing the child did caused this disease.
Point out that you can't "catch it" by hugging or sharing
a snack with the person who has it.
- Outline a plan for making sure the child's needs
are met, and their daily routine is kept as normal
as possible. This may involve enlisting the help
of relatives or neighbours in filling in for parental
responsibilities which the affected parent can no
- Give the child an overview of what doctors are
doing to help control the symptoms of the disease.
- Give examples of what the child can do to help the
affected parent feel loved (draw a picture, tell
Daddy you love him, etc.)
- Make sure your child knows that his/her parent's
irritability or mood swings are not their fault.
TELLING A TEENAGER:
- Give as much detailed information as possible.
- Be prepared for any reaction, including anger - all are normal.
- Answer every question, including ones about
transmission, as fully and honestly as possible.
- Give the teen options for doing further research on
her own (for instance, Internet resources), pointing
out recommended and reliable resources.
- Be flexible as far as daily chores and routines;
don't expect your teenager to volunteer to take
on extra duties or hospital/doctor visits to
alleviate your own load.
Make sure the adolescent has someone to talk to from outside
the family, preferably someone they trust and who will keep
their conversations confidential.
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 with HD.
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 alternatives 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.
Source: Horizon, newsletter of the Huntington Society of Canada ,
winter 1999) http://www.huntington-assoc.com/children.html
The Best Way to Discuss HD with Young Children
Q: What is the best way to discuss Huntington's Disease with
young children if a parent has HD or is at risk?
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 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 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:
I recently asked two questions of the HD support group at the
HDSA Center of Excellence at Emory University:
1. Should children be told about HD?
The answer was a unanimous YES. When discussion is avoided,
parents convey that HD is something about which there should
be embarrassment and shame. The group felt that difficulties
arise when this important information is withheld. Children need
to hear about HD from their parent and not by accident or
from someone else.
2. 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. Other helpful resources to consult on this
topic include The Cartoon Guide to Genetics by Larry Gonick and
Mark Wheelis, New York: Harper Perennial, 1991, and Walking
the Tightrope, Randi Jones, Ph.D., New York, HDSA, 1996.
Taylor Butler, LCSW, is a social worker at the HDSA Center of Excellence,
Emory University, Atlanta, GA.