All children have special needs at some time but some children have special needs all the time. These needs or conditions deviate from what society considers typical or the norm. These children might have physical handicaps, learning disabilities, or learning abilities that surpass the norm. They may have an emotional disturbance, chronic illness, antisocial behavior, or a combination of these conditions. Physical impairments are usually identified at birth but psychological impairments may not be identified until the child is older. Damage can be caused by heredity or prenatally from environmental conditions such as drugs taken by the mother. Other children suffer damage later due to child abuse, severe neglect, or an accident. This discussion will focus on children's impairments rather than on special gifts.
Parenting any child is a difficult task but parenting a child with special problems is even more challenging. There are additional stresses on all family members. How they cope with these challenges depends to some extent on how healthy each of these family relationships was before the special needs child was diagnosed. Some reactions are detrimental to healthy development:
- attempting to compensate for the condition by overindulging the child;
- reacting at times with hostility or even rejection; and
- focusing on the disability.
Some actions of parents are helpful:
- finding out all you can about the disability, treatments, and resources available for the child;
- developing a support system;
- being kind to one another and not taking out your anger or frustration on loved ones; and
- viewing the whole child with his or her strengths and weaknesses. This child, like all children, needs to develop a positive self-image and achieve as much as realistically is possible.
Initial Adjustments
Parents' initial responses to a child's disability vary greatly (Meadow-Orlans, 1995). Most parents are shocked. Any dreams they had for their child seem shattered. For some, the initial response is denial, which may be followed by depression. There is anger, guilt, sorrow, and often helplessness, but never joy (Batshaw, 1998). According to Kubler-Ross's research, parents may go through the stages of anger, denial, bargaining (to make conditions right), depression, and final acceptance (1962). It is important for parents and siblings to understand and then accept the nature of the disability. Guilt, anger, and blame are counterproductive. Love, setting realistic goals, and seeking needed professional help is the best course.
Siblings need special help in their understanding of the situation. Young children need simple and clear explanations. For example, "Your sister cannot learn as quickly as other children or understand as much. We can help her." Young children usually ask more questions when they are ready for more information. On the other hand, older children need accurate and more complete information about the disability. Not knowing only intensifies their feelings. They may think, "Why won't you tell me?" "How bad is it?" or "You don't trust me to know" (Batshaw, 1998).
Siblings experience a range of emotions. They may be embarrassed, resentful, or feel guilty that they are so healthy. Young children may feel that they caused the problem because they had some negative thoughts about the baby. Siblings may feel resentful when much of their parents' energy, time, and money go to helping the special needs child. In addition, they may feel guilty for these negative feelings (Trout and Foley, 1989). They also have to cope with their peers' reactions to their sibling's condition.
Children with disabilities need to come to terms with their special or limited abilities. In addition, they must adjust to the reactions of other children and adults to their problem. Any child who deviates considerably from the norm has more difficulty in establishing a positive self-image.
Support Systems
Family members with special needs children have many demands placed on them that are stressful. Not only can personal health suffer but these families have a higher percentage of divorces (Batshaw, 1998). Support systems are crucial in maintaining a healthy family. These support systems put parents and family members in touch with scientific information and other parents with similar problems who share experiences and valuable resources. Support groups are usually formed around a particular disability. Seeking and accepting help from extended family members, their place of worship, and/ or the community provides additional relief. It is important for parents to have some free time.
Many parents find satisfaction in networking to provide help for their child or other children. Parents have been active in the legislative process to support children and families with disabilities. In the 1950s, parents helped establish the National Association of Parents and Friends of Mentally Retarded Children, now called the Association for Retarded Citizens. Parents also helped to establish other support groups such as the United Cerebral Palsy Association and the National Society for Autistic Children. See Chapters 8 and 9 for legislation affecting children with disabilities.
Acceptance
After months and sometimes years, most parents can replace the anger, guilt, and/or blame with a degree of acceptance. However, it is difficult when one parent comes to terms with a child's condition before his or her spouse. Occasionally the spouse may never get to this point, remaining in a state of denial or grief. This makes it more difficult for this person (and the family) to cope (Batshaw, 1998).
Certain periods in the child's life will reignite the sense of pain and loss. Batshaw (1998) suggests that these events often include starting school, placement in special education, the period when most children start dating, or late adolescence, when many children go to college, find a job, leave home, and/or marry. When both parents and siblings have reached the stage of acceptance, family life can begin to have a sense of "normalcy" and members are freer to experience the many joys in life. Life is put into a broader perspective.
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Excerpt from Supporting Children in Their Home, School, and Community, by D.H. Sailor, 2004 edition, p. 163-165.
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