The skeleton in the closet

F

rom the end of the hallway came a very loud screeching scream, and a boy about 6 years old, came running into the drawing room waving his arms like a flamingo. He had not realized there would be so much noise and clatter in this room, he had probably only wanted to be free from his cooped up asylum of the dreary room they always put him whenever guests came, but too late, the noise was so unbearable and the number of people around so intimidating that he started crying helplessly, “Mama! Mama!” His older brother, embarrassed and perplexed, took him back to the room and decided to stay there himself with him for it was not possible for him to answer everybody’s questions for the rest of the dull evening. This is how the regular lives of most families with children with developmental disabilities and autistic tendencies are spent when it comes to social gatherings and events. It is their way of life from that defining moment when a special child becomes a part of their families. The child with special needs who is raised like a skeleton in the cupboard is deplorable and yet what other way is there for the confused families whose lives have been beset forever. The answer does not lie with any single source.

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.

When it comes to mental illnesses, it is easy to be unsettled, especially as a parent, the responsibility becomes complex and less rewarding in many cases. The fear of the unknown and lack of awareness even among the better educated creates misunderstandings and stigmas. The future of these children is unsure and insecure and parents in majority of cases due to financial and societal pressures are given to adopting mismanagement in raising the children whose special needs demand special care and rearing.. The society outcasts this population and there is no mercy or understanding when it comes to providing support to families of such children.

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. 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. Foremost, 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. Kiran B. Ahmed a working psychologist is of the view that: Psychotherapy can play an important role in educating the parents and families with mentally disabled children - and not just educating but also attuning them to the situation. A mentally disabled child has problems as regard intelligence but his / her emotional and physical capacities are unaffected. Such children need love and care as they are growing up and their security needs must be met with. Predominantly as they reach puberty and bodily

changes occur, families need to know how to deal with the circumstance effectively. To make the process easier, it is of utmost importance to find out the level of educability of the child and then synthesize it with that of the adults and others in the household. Cases of abuse have become rampant and neglect is common leading to a sad and unnecessary deterioration of what might have otherwise been a better scenario if dealt with properly and not left to fester in the hands of servants etc.

Nazia Bashir, a clinical psychologist working with slow learners and autistics at The Living Institute of Special Learners, says that the major problem she has come across with parents of special children is that of the acceptance of the child’s problem. Most of them according to her are less knowledgeable and remain in denial for a long time about the exact nature of the trouble. Reality sinks in later as parents keep focusing on the causes of their child’s handicap rather than on intervention. Genetic causes and familial patterns of a particular disease remain a point of apprehension and uneasiness.

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. There are online communities, like Autism Meetup, that connect families. Meetings and support groups are organized with the motto of healing a whole family instead of rehabilitating just the outcast child. In this regard, Aeny, a clinical psychologist working at an NGO for children with learning disabilities in Karachi, personally feels support groups like parental associations help a lot in understanding the child’s problem plus overcoming the frustrations and anxieties which the parents have in their minds by at least discussing out while seeking help through professionals as well. Not only for parents but sibling support groups also work out well because they are also facing emotional disturbances. Besides this Parental education regarding their child’s diagnosis, intervention and setting up realistic goals and concerns is equally important, so that they can understand their child well and work with him and provide better environment so that their child can function well.

The effects of a handicapped child on his siblings are very profound. 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. 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. When they are pushed aside or expected to assume maturity and responsibility beyond their years they are 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.Ayesha, sibling of an autistic girl believes that her sister’s presence is blessed for their family. She feels her sister is literally”the angel” in their house that brings them all closer and connected as a family. In conclusion we may say that although steps have been taken to improve the psychological well-being of a family that has to support a child who’s mentally handicapped, the efforts are nonetheless insufficient. There is a need for proper counseling of parents and families as a regular part of special school programs and individual intervention programs conducted by professionals. For the benefit of the child’s welfare it is necessary not only to involve the family in the intervention but to keep their spirits alive and their psychological health secure, for it is after all the whole body that needs healing and not just any of its parts!