The people most affected by Huntington’s disease are not only the patients with the condition but also the people around the person with the disease. This article focuses on the issues of children living with a HD patient.
Difficulties for Children
The majority of children who have a parent with a neurodegenerative disease, including HD, find it difficult to cope because they do not have the maturity and coping skills to deal with this complex situation. Often children are faced with
- Feeling Embarrassed
Having an illness in the family can make the child feel embarrassed or ashamed. The involuntary movements caused by HD tend to be distinct and patients with HD tend to be clumsy. This behavior can draw public attention because it is not immediately clear why the person is acting this way. Unwanted public attention and hearing upsetting things about their ill parent can cause a lot of confusion and anger.
- Stressful Household
Having HD in the family can cause a lot of stress as a result of increasing demands on the rest of the family members as the symptoms progress. The stress can also arise from the children being repeatedly separated from a parent that needs to be hospitalized for treatment or that is unable to provide consistent care. The eldest child may also have to grow up faster than other children because he or she has to act as a parent to the ill parent and younger siblings (This last point seems a little too circumstantial). An increase in stress may cause the children to feel insecure and anxious.
- Maltreatment and Abuse
In some cases, HD patients can become emotionally or physically abusive to family members as a result of the patients experiencing the behavioral symptoms of the condition. Some of the behavior changes as a result of HD that could manifest into abusive behaviors include aggression, disinhibition, hallucinations and mania. For more information these behavior changes, please refer to HOPES article on ‘The Behavioral Symptoms of Huntington’s Disease’: http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/the-behavioral-symptoms-of-huntingtons-disease/#aggression
When children of HD patients are faced with abusive situations a number of problems may arise. Often children will withdraw and isolate themselves as they develop feelings of anxiety faced with an unpredictable environment. These children may also find it difficult to concentrate on a task due to their anxiety levels. Children can also develop behavior problems when faced with situations and feelings that they are not prepared for. Children will often learn maladaptive behaviors and coping tools from their ill parent like temper tantrums, hitting, lying, bullying, and manipulation. Children may also feel anger or frustration due to their family situation, which can be exhibited in physical or verbal aggression.
How to decrease risk factors for the children?
- Provide Knowledge
The most important thing a family member can do for a child that has HD parent is to educate the child about the disease. Children develop anxiety and worry when they observe unstable behaviors. Explaining to a child that a parent has these behaviors due to an illness may help the child empathize with rather than resent the ill parent. There are many resources for parents on how to talk to your children about HD. For more resources please refer to HOPES article on “Talking to Children About Huntington’s Disease”: http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/talking-to-children-about-huntingtons-disease/
- Provide a Stable Environment
It is often very difficult to provide a stable environment when one parent is unpredictable and schedules are continually being challenged and changed. However, it is important to try to provide predictability for a child and to commit to a routine. Children need a sense of routine to feel secure.
- Seek Psychotherapy
Seeing a professional on a regular basis can be quite helpful to the child and all family members. Having a designated, impartial person to talk to and work out the issues with can be extremely beneficial. This can help children feel more supported and understood as they work through difficult feelings associated with having a parent with a neurodegenerative disease.
- Nurture the Relationship With the Parents
It is important for children to have a positive connection with their parents. Often when a HD parent is unable to properly care for their child due to their symptoms, the relationship becomes strained. Children can become fearful or anxious around their ill parent and even feel unloved. It is important for the caregivers to make extra efforts to maintain the relationship between parent and child so that the child can grow up feeling secure and loved. When a child experiences instability due to a parent’s mental illness, it becomes important for the child to have appropriate role models. If a parent is unable to provide a sense of security for their child or to attend to their emotional needs appropriately, having a stable and secure relationship with another adult can help the child more easily be able to separate a parent’s behaviors due to the illness from negative feelings towards the child.
- Healthy Peer Relationships
It is helpful for children to have healthy friendships with their peers. This allows them to develop trusting bonds and negotiation skills that will help them to cope with difficult times in the future. Interacting with their friends can help children of HD parents develop a more encompassing view of the world than they would have if kept isolated.
- Foster Healthy Interests Outside of the Home
Often children of HD parents are not adequately socialized with peers and rarely have the opportunity to partake in sporting events or cultural activities on a regular basis due to lack of organization or chaos in family functioning. It is always important for children to develop their personal interests outside of the family in order to learn how to properly separate and develop a strong sense of identity and self. Children can also learn tools to cope with their daily environment and the stresses of living with a HD parent through the extracurricular activities.
In conclusion, as with any difficulty in life, having an HD parent is much easier to deal with once we have the tools to understand it and deal with it appropriately. With education and coping strategies, children with an HD parent can develop nurturing relationships with people in their lives.
Brown University Child & Adolescent Behavior Letter, 18(7), 1. Leschied, A. W., Chiodo, D., Whitehead, P. C., & Hurley, D. (2005).
The relationship between maternal depression and child outcomes in a child welfare sample: implications for treatment and policy. Child & Family Social Work, 10(4), 281-291. Orel, N. A., Groves, P. A. & Shannon L. (2003).
Positive Connections: a programme for children who have a parent with a mental illness. Child and Family Social Work, 8, 113-122.