Marcia A. Cohen
Objective
The objective of this paper is to help students identify some of their own feelings toward disabled people and become aware of the effect a handicapped child may have on his family.
Introduction
The birth of a baby is usually anticipated with great excitement and expectations of a future filled with happiness and success. This exuberance may become muted with the birth of a disabled infant. It does not matter if the handicap is blindness, retardation or a physical abnormality. The family into which this child is born will change in some ways.
This paper will focus on the effect a handicapped child may have on his family. (Masculine pronouns will be used throughout the paper for continuity and because a slight majority of handicapped children are male.) A particular disability will not be addressed because parental reaction to almost any disability appears to follow certain stages. Research seems to indicate that the severity of the handicap and the degree of dependency by the child on his family is the most important factor in his acceptance, than whether he has cerebral palsy or spina bifida.
Having a handicapped child born into a family and grow into adulthood is one of the most stressful experiences a family can endure. Parental reactions to the realization that their child is exceptional usually include shock, depression, guilt, anger, sadness, and anxiety. Individuals handle each of these feelings differently and may stay in certain stages longer than others. Some parents perceive the handicapped infant as an extension of themselves and may feel shame, social rejection, ridicule or embarrassment. Parental reactions may be affected by economic status, personality traits and marital stability. In short, an initial parental response may be a form of emotional disintegration. This may evolve into a period of adjustment and later into reorganization of the family’s daily life. Some parents cannot cope beyond the emotional disintegration. They must then decide whether to give the child up for adoption or to place him in an institution. This decision is not easy and is stressful to the family. However, the concern here is with the family that chooses to raise their special youngster at home.
A number of practical problems may make living with a handicapped child especially demanding. For example, there may be financial strain to provide necessary medical expenses, special equipment, possibly special schools and care takers in the parent’s absence. The family may find it difficult to entertain friends at home or to visit others. Transportation may become difficult if special equipment must be transported with the child.
From our student’s perspective, the effect of a handicapped child on his siblings may be most relevant. Research will be presented for the teacher in this area. However, some evidence suggests that many children can adapt themselves to the presence of a disabled sibling but that they tend to adopt the attitudes of their parents towards the family situation.
My reasons for recommending this teaching unit in the Year of Disabled Persons (1982) are varied. Handicapping conditions occur in all ethnic groups and cross all economic strata. Most students know someone in a “special” class or of a disabled person in their neighborhood, if not in their immediate family. With handicapped students being mainstreamed into regular classes and with more barrier free environments, the disabled are becoming more visible. Perhaps a unit of this nature will sensitize students to the many problems that arise in the daily lives of some of these people and their families.
Background and Strategies
It seems advisable to present a unit on different kinds of handicapping conditions before presenting this unit. A bibliography for background information is offered to provide a foundation for discussion. The Mew Haven Public School System provides classes for Educable Mentally Retarded, Learning Disabled, Emotionally Disturbed, Hearing Impaired and Physically Handicapped students within regular school buildings. Students see and may know some of these youngsters. This recognition could be a basis for opening discussions. The physically handicapped classes have students with cerebral palsy, spina bifida, prader-willi syndrome, muscular dystrophy, epilepsy, and so on. The causes, characteristics and nature of these disorders could easily be incorporated into science, biology, health, or social studies classes.
In presenting this unit to a class it might be divided into two parts. Part one would encompass the affects of a disabled child on his parents; part two would emphasize the disabled child’s effects on his brothers and sisters.
Some of the effects a handicapped child might have on his parents were mentioned briefly in the introduction. A common initial reaction of parents is disappointment and grief—grief over the death of a dream. Usually this grieving time helps the parents face their problem and begin to regroup themselves for a change. Many parents ask, “Why me?” “How did this happen?” Some parents search for a specific cause, most find out it wasn’t their fault, and they could not have prevented it. Other parents may find out that a genetic basis is the cause and receive counseling regarding future children. In either case, some parents will seek whatever information they can find about their child’s disability and go in search of a cure. These parents may see dozens of professionals, try new diets, drugs and therapies, all in the hope their child will become “normal”. Eventually, most parents learn to accept their child, develop tolerance for his disabilities, appreciation for his uniqueness, and come to have pride in his assets.
The acceptance of a handicapped child into a family may be eased if parents have an opportunity to meet with other parents of children like their own. Within these parent groups, parents learn that their problems are not unique. They have a chance to share experiences, learn how others have coped, and work with others to find solutions to common problems. This can greatly reduce the guilt and stress many parents feel. Additionally, some of these parent organizations have become active lobbyists on behalf of their children. They have secured legislation to provide educational, recreational, and vocational services. Their task has been difficult and certainly they face many challenges in our current economic crisis. However, united they have power and hope. Much has been said about the adverse effects of a handicapped child on the relations of the normal family members, but there is little substantial research in this area.
Faber (1963) studied the effect of retarded children on their normal brothers and sisters. He found that the variable which seemed of greatest importance to the siblings was the degree of dependence of the retarded child, that is how much he was able to do for himself. The more dependent the child, the more adverse was his effect on his siblings. In other words, the more responsibility required by the normal siblings (particularly girls), the less likely the handicapped child would be welcomed into the fold by his brothers and sisters. Jealousy and resentment may also develop if the handicapped child requires most of his parents attention, leaving short tempers and impatience for the others.
Robinson and Robinson (1965) suggest that most children can adapt themselves to the presence of a retarded brother or sister and that they tend to adopt the attitudes of their parents. Only when they are pushed aside or expected to assume maturity and responsibility beyond their years are they likely to suffer serious consequences. Parents might be advised to acknowledge and be sensitive to their other children’s feelings regarding their handicapped sibling. It is important to not make the disabled child a burden to his brothers and sisters. Additionally in most case the handicapped child would probably be happier in activities in which he is not only welcome but an active participant.
While a handicapped child may provide additional stress on a family, Mahoney (1958) documented some positive effects. He found that the disabled child can have an integrative effect by focusing the family’s energy in a concerned, loving manner, thereby minimizing some of the other day to day problems. Some parents expressed a new appreciation for life and ordinary things they used to take for granted.
Parental Involvement in the Educational System
The focus of this paper has been on the reactions of families to their handicapped child. As teachers it is important to be aware of parental rights within the school system. With passage of Public Law 94-142 in 1975 all handicapped children between the ages of 2.8 years through 21 years are entitled to a free appropriate public education within the least restrictive environment. The least restrictive environment clause means that a student may spend all or any part of his day in a regular classroom. Therefore, teachers with little or no special education training may be responsible for the education of some of these children. However this need not be a threatening situation. Public Law 94-142 is a comprehensive law that is constantly being amended. Teachers can read about it in more detail in the Federal Register available through the Office of Education in the Department of Health, Education and Welfare. The sections specifically dealing with parental involvement are important for teachers to know about. All school age handicapped children must have an individualized education program (I.E.P.) prepared before they begin school. A meeting including the parents, teacher(s), administrator psychologist, social worker and any needed ancillary personnel such as speech therapist, physical therapist, occupational therapist, nurse and so on, must be held. At that time the educational goals and objectives are mutually decided upon for one year. At the end of every year a new meeting must be held and the annual goals reviewed and updated. It is at this very important meeting that teachers can provide input regarding the child’s present level of educational performance, his learning style and specific services that are needed to help this child learn to his maximum potential. Any problems encountered by the child in the regular classroom should be addressed at this time. Parents must be invited to this meeting and they must agree to all decisions made regarding their child. If not, they can appeal for a due process hearing. Usually however this is an important opportunity for parents and teachers to work together in a very precise and concrete manner. Parents and teachers can share their successes and frustrations and work together to reach their goals.
Conclusion
Why should I teach a unit about a handicapped child’s effect on a family? Handicapped children, especially in New Haven, are being integrated into regular classes in greater numbers. Some of these children have visible handicaps others do not. All however have special problems that need to be acknowledged. By introducing this unit to “normal” students it gives them an opportunity to personalize the experience of a disability to their own life. Students are provided with lessons that start them thinking about their own families and about families they may someday have. They then must address the issue of unexpected change—a handicapped child. Lessons also encourage students to discuss the problems and responsibilities having a handicapped brother or sister might entail. These lessons are an attempt to get students to empathize with families experiencing this situation.
As handicapped students are mainstreamed, perhaps students who have completed this unit will be more tolerant and understanding towards them. Maybe there will be less name calling in neighborhoods and more accepting neighbors.
