Speaking Out ~ Living With HD

Talking To Children About HD In The Family
Home | Index | Guestbook/Tell A Friend
Talking With Children About Huntington's Disease
In The Family
by Arlette Lefebvre, MD, O.On, CM
 Horizon newsletter of the Huntington Society of Canada , winter 1999
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.


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.

  • 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." 
  • 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 longer handle.
  • 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.
  • 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.

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 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.