Families of the mentally retarded – challenges and concerns
Hrithik, 12, is the youngest of three children in his family. For many years now, Hrithik has not been going to school because he is unable to cope with the academic demands made there. While other children begin to talk around the age of 1, Hrithik did not begin using words till he was about 4 yrs old. Even now, he uses a limited number of words to make very short sentences. He communicates more through signs and gestures. He is unable to button his shirts and requires help to bathe and eat. His parents worry about him constantly. They cannot understand why Hrithik is like this when his two siblings are perfectly normal. They have gone to many temples and conducted countless rites and rituals and pray to God every single day to make him well. They wonder if God has cursed them in some way to make them suffer so. On the advice of a friend, they finally go to a psychiatrist seeking some answers. He tells them their child is mentally retarded and that there is no cure for this condition. They refuse to believe him. They get second and third opinions, try homeopathy and ayurveda and nothing works. They feel helpless and despairing and do not know who to go to for help.
What is Mental Retardation?
The World Health Organization defines it as a condition of arrested or incomplete development of the mind which is characterized by impairment in motor and social skills and language ability. The degree of impairment varies from one child to another and also depends on the degree of mental retardation. Many children with mental retardation might also have coexisting conditions like autism, Down’s syndrome, cerebral palsy, Attention Deficit Hyperactivity Disorder(ADHD) and epilepsy (fits) which need further attention and care. The more severe the mental retardation, the more help the child needs to look after himself/herself. Usually, when a child is mentally retarded, the family’s complete focus is on the child and how to help him/her to the best possible extent. However, as caregivers to this child, the family members(the parents, siblings, grandparents or other relatives) go through a significant amount of stress and anguish themselves in the process of raising such a child. Hrithik’s parents are a typical example of such a family.
Challenges the Families face:
1. Acceptance – When a doctor gives the parents the news that their child is mentally retarded and will never be completely normal, it is too painful for most parents to face. Many parents, like in Hrithik’s case, spend years in denial, trying to find some solution or cure to this problem. They might go from one hospital to another, try alternative forms of medicine or look to religion for a miracle. But mental retardation is not a disease and there are no medicines to cure it. It is a syndrome which is caused by genetic factors (chromosomal abnormalities like in Down’s Syndrome), hereditary causes(due to marriage between close relatives, previous incidences of mental retardation in the family) or due to brain damage of some sort. As hard as it is to accept, once parents realize that their child is mentally retarded and will always remain so, their expectations of the child will readjust accordingly. They can move on to taking the necessary steps to help the child make the most of his potential by going addressing his special needs through special education, vocational training etc.
2. Self-blame – The parents wonder if they did something wrong, during the course of the pregnancy or after birth, while taking care of the child. They wonder if God is punishing them for their sins.
3. Stigma – Many parents might feel that a mentally retarded child is something to be ashamed of and cannot be allowed out of the house. Neighbours, relatives or others might make cruel remarks about the child and parents might feel isolated and without support.
4. Helplessness – Many parents don’t know how to get help for their child once he/she has been diagnosed with mental retardation. The sense of helplessness comes both from a lack of understanding about mental retardation and a lack of information about the resources available for mentally retarded individuals. It might also arise from insensitive handling of the case by the mental health professional, who might not have enough time to talk to each family at length about their experience.
5. Behavior problems – Many parents find it difficult to handle behavior problems like screaming, crying, inability to concentrate, aggressiveness, stubbornness etc that a child with mental retardation might have. For parents, especially mothers, who have to take care of household tasks and work apart from taking care of the child, patience can wear thin. Getting angry with the child or hitting him/her also does not help very much. Often, the child might not understand how disruptive his/her behavior is to others and why they get angry.
6. Unrealistic expectations – Many times, parents of mentally retarded children are dissatisfied with the slow progress their child is making in learning new things. They push harder to force the child to learn quicker and try to be on par with other children. However, the child can only learn to the best of his/her ability and no more. If he/she has the mental age of a 8 yr old, he/she cannot be expected to undertake a normal vocation which requires complicated mental processes. When parents have unrealistic expectations of what their child can achieve, it leads to disappointment not only for them but also in the child who does not understand what he/she is doing wrong.
7. Worry about the future – One of the main concerns of parents with mentally retarded children is about how their children will be taken care of when they die. They feel that no one else can take care of their child with same love and care that they have and they are scared about how their child will manage to survive in the world.
8. Marital/family problems – Having a child who is mentally retarded places greater strain on a family than otherwise. Due to the extra tasks that have to be done to take care of the child, parents feel overworked, stressed out and unhappy. The marital relationship can become strained if the parents have different approaches in dealing with the child or if one parent has to take care of the child all the time. Sometimes, mothers might feel they are not getting enough support from their husband in taking care of the child. Fathers might feel that the mothers are unnecessarily worried and overprotective of the child. Other family members can complicate matters depending on how they react to the child.
All these reactions that a family experiences are completely normal. It takes time, support and accurate information to understand and accept what their child is. Even after coming to terms with the fact that mental retardation is incurable, it is very difficult to give up hope that someday something will make their child normal. This hope is what might keep most parents going. As long as this hope does not lead to demanding too much of the child, it is perfectly ok. There are professionals like psychiatrists, clinical psychologists, occupational therapists and counsellors who can help you if you are going through a similar experience. For more information on special education schools and vocational training centre, you can contact the National Institute of Mental Handicap, Secunderabad or visit their website. For further information or counselling for the families of mentally retarded individuals, contact us at talkitover.in
1. Association for the Mentally Challenged, Bangalore, www.amcin.org