Talking With Children About HD

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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.

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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

leader. They are free to anyone who sends me their snail mail address.
My e-mail is HDlighthousekids@aol.com

Jeanne

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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

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.

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

From the HDSA "Information" http://www.hdsa.org

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:

Acceptance and respect 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; 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 intended for it to occur.

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.