As difficult as it can be when illness or disability enters into a home, there needs to be equal focus on both the needs of the child and the needs of the person who is ill. Achieving a balance between each person’s needs allows the child to focus on age-appropriate issues such as school, interactions with peers and personal growth, without nurturing feelings of guilt over not “doing more” with respect to the ill or disabled person in the home. Verbalizing interest in the child’s life provides positive reinforcement for development of interests outside the home. This can also help to decrease mood changes associated with fear or loss of control, as they have the opportunity to succeed outside the home environment with the support and approval of those in the home.

Escape behaviors come into play when the child has to devote a large amount of time providing care for the ill or disabled person, or is having difficulty coping with the change in role. A means of coping, these avoidance behaviors serve to de-stimulate the child and insulate them from their feelings. By changing their role from “caregiver” to one of “member of the household,” there is no need for avoidance of what could be an intensely emotional situation. Though normal self-isolation behaviors may occur, they are less likely to be in response to feelings of stress related to the illness or disability.

Children are affected by illness in the household, just as it affects others in the home. When young people are put into the role of caregiver, there can develop a role-conflict and changing dynamic in the parent-child relationship that can manifest itself in both emotional and physical ways. Understanding the effects of this situation, the grief associated with the change in the home environment, and the stress response in the child can aid in making changes in the expectations of children in this setting, and help them cope and respond in a more positive and age-appropriate manner to this unique and challenging situation. Joel and Scott agree with this. How do I know? I am their mother; I have fibromyalgia and I had a stroke at the age of 37.