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How children cope with having a parent with Huntington's Disease

The issues faced by children in HD families are unique because of the complexity of the issues and how they are compounded by the hereditary nature of HD. It is important that children are given every assistance to learn how to adjust to the impact of HD in a manner that allows them to live their lives to the fullest extent.

This is a summary of some of the issues that seem to be common in many HD families.

Changes Faced by Children

Children with a parent with HD may need to cope with changes to income-producing activity ( i.e. reduced working hours or having to give up work completely), which may lead to a drop in standard of living, changes to patterns of decision-making and changes in parental roles. If these changes can be negotiated smoothly with minimum disruption to the child's boundaries, the adjustment is more likely to be less disruptive, but as this can be a very difficult time for the whole family a child may find themselves taking on a degree of responsibility that is inappropriate for their age.

The affected parent's symptoms may mean that the manner of relating to their children becomes increasingly difficult due to changes in behaviour, and children may have to learn to adjust to this. If this can be openly discussed with the child, and they are given enough information to help them understand what is happening, this will assist the adjustment process.

Communication

Many children can become frightened and confused about the disruption to their lives and may display certain behaviours that reflect this. It is important to open up communication about their fears and the difficulties they are experiencing with their affected parent, which includes listening to, understanding and accepting their experiences.

Children of HD sufferers may also experience the consequences of relationship breakdown, as one parent may feel they are unable to cope with changes in their partner. This also includes separation, when the affected parent may eventually go into residential care. Some children also have to cope with the death of their affected parent, either through HD, or suicide.

Children of HD parents can often develop feelings of intense shame, around their affected parent's symptoms. This may lead to wanting to hide their parent away, not inviting friends home and not wanting to be seen out with their parent. This shame can be felt quite intensely if the child has seen their parent ridiculed by others.

Wanting to hide their parent can lead them to have feelings of guilt. These children may grow into adults who have issues with shame and guilt and problems with depressive illnesses.

The Challenge

Another challenge that children of HD sufferers face is living with being at 50% risks themselves. There are a number of ways in which children and adolescents choose to deal with this, the manner of which depends on the quality of information they have received, how this information is presented and the support available to them. These issues range from denial, to over preoccupation with their belief that they will or will not develop the condition.

The ability of ‘at risk' children to cope with this is often compounded by the way in which their affected parent deals with issues around guilt (for possibly passing on the gene), and fear (that their children will develop the condition). The parent's way of compensating for this may be to become overprotective, overindulgent and inconsistent with discipline.

Telling children about HD and what it means for them

Children can be very perceptive and it is important to provide them with some kind of concept to assist them in understanding what is happening to their parent. Children will learn quite early that there is something different about their parent. If they do not have some type of concept to understand this, they may well invent one of their own, which could most likely to be fear based. Here are some guidelines which may be useful when deciding when and how much to tell children.

It is important to be aware of your child's level of development and their ability to understand and reason, be guided by the questions they ask. The task of parents is trying to create an environment where they feel free to do this.

For children under the age of 8 or 9, it is important to be as concrete as possible. HD can be explained as something that affects the brain, (which is something that makes everything work properly). It is also important to help children understand that they themselves are not to blame for their parent's irritability, etc.

An inevitable question that young children will ask is "can I catch it?" The response to this needs to be honest, but framed in a way that will not alarm the child. To be told that it is a condition that affects older people, as being old is a remote concept for a young child. It is probably best to avoid discussing genetics. At this stage, it is probably an issue best to avoid with younger children - emphasising "might not". Generally, be guided by the child's questions. These questions will become increasingly complex as the child develops and the complexity of the responses can be geared accordingly.

From past experience, children who have been introduced to HD at an early age and who have been given opportunity to adjust to a parent with the condition, cope best with the knowledge of their risk. By the time they are in their late teens, they are able to make decisions about their lives with maturity and an integrated awareness of their risk.

In families where these issues have not been dealt with appropriately, the coping mechanisms of teenagers to their risk are likely to be maladaptive.

Resources for teenagers and young people are available.

A Guide for teenagers 13-17 years

A guide for Young People 8-12 years

Huntington's Western Australia
Telephone: (08) 6457 7599
Fax: (08) 6457 7597
E mail: admin@huntingtonswa.org.au
www.huntingtonswa.org.au

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