A child’s family and parents are the most powerful influence in a child’s life. Before he or she significantly interacts with others in the world, a child does so with his family members. Parental interaction is most important to the child. This is especially so in instances where a child is born with a disability.
When a child is born with or it is discovered he/she is disabled, the parents, in general, will first experience a period of emotional crisis characterized by shock, denial, and disbelief. This initial reaction is proceeded by periods of anger, guilt, depression, shame, lowered self-esteem, rejection of the child, blaming each other, rejection of God and overprotectiveness. It is at this stage that one of the parents will seek a divorce and/or the abuse of the disabled child or a sibling will occur. If family members and parents come together, the third stage in which they accept the child will generally arrive. Researchers who have studied families with disabled children in them report that having a member of the family with a disability will experience, often life-long periods of confronting, adjusting and adapting to the child through their developmental stage progressions to adulthood and beyond.
In 1993, Florene Steward Poyadue, a Registered Nurse and the parent of a Down’s Syndrome child, conducted research and suggested a stage beyond acceptance and adapting to a disabled child. She proposed the notion of appreciation for and positive aspects the presence of the disabled child bring into the family in many instances. She reported among the positive responses was that parents/caregivers had given her were: 1) couples coming closer together creating a stronger bond among family members; 2) being more responsible parents; 3) having unexplainable and unexpected pleasures while working with their disabled daughter or son. Researchers following the Poyadue studies arrived at similar conclusions.
Though positive experiences can offer a great deal of hope for families with a disabled child, taking care of a child with a disability is a demanding task. Children with disabilities, especially those child with chronic illnesses, can entail tremendous amounts of time, strain on family resources, medical costs as well as cause added stress to parents and other family members. In some cases, a child with a disability can result in mental and physical stress on family members and on the parents. Much of this is due to a lack of income. One parent, if it is a two parent family, must work while the other family member must remain at home caring for the child. One parent families are unable to work at all depending entirely on public assistance and other means of support. Respite care can reduce a great deal of these stressors. Church and community oriented programs for these families in the way of time off, volunteers to run errands, as well as parenting information have been found highly useful for these families.