Speaking Out ~ Living With HD

Children of Parents With HD
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Children of Parents With HD
Contents adapted from a presentation by Donna Palumbo
at the 1997 HDSA National Convention

If your parents have read this, print out a copy for them!
When it comes to growing up with a sick parent, open and honest discussions with the children are necessary. This cannot be more true than for children with Huntington's disease in their family.

Because HD often leaves one parent incapacitated, prone to violent mood swings, and unable to tend to the emotional needs of the children, it is important that the family address the stresses this places on them.

Keep in mind that if parents   do not discuss the illness openly with their children, the children are left to answer difficult questions on their own, often imagining the worst without benefit of more appropriate information. For example, children may wonder   if their pets could get HD.

Depending on age, children might ask:

  • What is going to happen to my parent.
  • Who is going to take care of me?
  • Who is going to take care of my parent?
  • Do I have to give up my life? (e.g. Will I have to take care of my parent?)
  • Will I get the disease?
  • Will I be able to find a partner who can accept this?
  • How do I share this information with my peers?

Parents should remind them-selves that their children will struggle with these questions for most of their lives.

To help children cope with these very real concerns, parents should encourage their kids to speak freely and ask questions.

Parents do not need to give their children more information than they need, but they should make their kids feel there is no secrecy or shame in discussing either HD or their feelings.

For example, if a young child asks "can I get it?", a parent can truthfully answer that they don't know. A younger child cannot process information at the same level as a teen. So, it is important to keep the discussion at the child's level.

As a child "gets older, the parent will have to discuss   the hereditary nature of the disease and that the child does have a 50% chance of carrying the gene. Honesty here avoids  the possibility of your child suffering secretly, convinced they have a 100% chance getting HD.

While children at different developmental stages will experience different emotions when coping with a sick parent, the range of emotional reactions may include denial, guilt,grief, anger, shame, and hope. All of these are normal responses to the stress HD piles on their lives.

Problems occur when a child experiences any of them over    a prolonged period and has no outlet to address their concerns. If any negative behaviors persist, the family should seek professional help.

Denial can be very powerful and pervasive in a family A child in denial may become aloof and distance themselves from the family.

Do not misinterpret denial, a coping mechanism, with coldness or lack of caring.

Working through denial proceeds at different paces for different people. A parent identifying this behavior in a child can let them know it's okay.
"I understand that you do not want to think about this right now."

It is often difficult for a child to verbalize feelings of guilt. It is incumbent upon the parent to discuss guilt with their children. A child may feel that they somehow caused their parent's illness or made it worse. An older child may feel guilty about past behavior Children may also feel guilty for the anger and shame they experience.

Parents must reassure their children that they are not responsible for causing the illness and that anger and shame are natural emotional response's to the stress put on their lives

Children will also experience grief, grief over the loss of a parent/role model, the loss of family opportunities, loss of a secure future, and, in general, the loss of control. They may feel they are not getting what they need from their parents and feel neglected.

Losses that may seem trivial to adults, for example giving up Little League to assume extra responsibilities in the home. are very real to children.   Such "small sacrifices" are symbolic of all their losses: the normalcy that Little League may have brought to their life is gone

The expression of anger may be a healthy transition from guilt and self-blame. But, because the anger is toward an intangible thing.

HD, it is often misdirected. Children can also feel angry about their losses. Parents   can support their children by maintaining an open dialog  about their anger, even when   it appears exaggerated or uncalled for.

All kids are embarrassed by their parents at some point in their lives. Feelings of shame are intensified when a parent has HD. Communities do not understand what goes on in an HD family and may make assumptions.

Educating the school (making a presentation at the school and teaching the students about the disorder) or community (speak  to the parents of your child's friends and answer any questions they might have) can be effec-tive strategies.

Parents must also convey positive information. Success-fully coping with HD requires a sense of hope. Children should be told they have a 50% chance of not getting HD. They need to know, moreover, that research into treatments and a cure is moving steadily forward. With the identification of the HD gene, affected families have more choices than ever before.

It is also important to make   HD central in family life. A child's normal needs must he met. Special days must be acknowledged and "dates" with children when the problems of  HD are left behind and excellent opportunities for children and parents alike to simply enjoy themselves.

Allowing children to discuss HD is the best way lo prepare them for what lies ahead. Children will deal with more information as their cognitive skills develop. As they get older, open, honest discussions will promote trust and coping strategies.