All parents hope to have normal and happy children. Children they can be proud of. It is natural that parents are greatly distressed when they learn that their child is in some way handicapped.
The Initial Trauma
Shock, anger, guilt, and self-pity are among the first feelings that parents of a handicapped child experience. All these feelings are valid.
Indian mothers of handicapped children reflect on the irony of the situation where thousands of women in rural areas and homeless on footpaths, without having access to the basic healthcare, are able to deliver normal babies. Why ME? they ask. Along with anger comes the fear and guilt that an unknown karma is at work. Perhaps my fate is bad, they wonder. I am not meant to be happy in this life.
Self pity follows. Parcelling of blame all around happens: on god, on their parents for persuading them into marriage or on other members of the family.
However, it becomes counter productive if parents continue to luxuriate in these feelings without tackling the issue on hand: care of the disabled child.
The Problem of Acceptance
Without doubt it is difficult to accept the fact that a child is handicapped for life. This implies many things.
That the mother may have to sacrifice fully or partially, her ambitions for a career.
The father, whatever the nature of his profession and opportunities available, may have to stay tied to a city or town where help is available for the child.
Physically, more efforts have to be put in to cope with the child. Lifestyles may require drastic changes to accommodate the child's needs.
Success may come slowly and in small measures, seemingly incommensurate with the efforts parents take.
Financially, it may take more to raise a handicapped child. And there is no guarantee that the child will some day earn his or her living.
Whew! Just thinking about it is draining. You have to be the parent of a spastic child to know the depth of the feeling. A sense of insecurity persists. One lady who had worked along with her handicapped daughter to the level of making her completely self reliant, put it movingly. During the day we are too busy to worry about anything. But at night when I lie back in bed, fears creep in.
A Mothers Position
The mother of a spastic child is in an unenviable position; more so in the patriarchal Indian society.
Often, tacitly or openly, the mother is blamed for the handicap of the child.
The care of the child is often left to the mother. The male relatives are too busy to spend time with the child. It is not uncommon for a mother to tend to the daily routine (washing, shaving, bathing) of her handicapped son who is in his thirties, because the male relatives choose not to be involved with these.
The child grows to be excessively dependent on the mother and the relationship can get obsessive. It can get to be exhausting for the mother.
On the flip side, the mother is likely to be the most reassuring figure in the childs life and her commitment can go a long way towards helping the child.
Your Attitude is the Key
Accept the child: You have to mentally prepare yourself to love and care for the child quickly. The spastic infant needs hugging and holding as much as other infants do. Get help from a special school and learn how best to handle your child.
Both parents must be involved: Shame and disappointment make some fathers try to get away from the problem. In the long run the situation will only get worse. When both parents share the responsibility, there is a greater chance of making the child adapt to his disability. There is less stress in the household.
Dont isolate yourself: When there is a spastic child in the house it stirs many kinds of reactions in the social circle: curiosity, pity, a patronising attitude, and genuine concern. These might not be pleasant. But you have to learn to tackle these. Dont avoid people, especially those you feel mean no harm. When asked about the handicap, explain to them in a simple and straight manner. Dont lie about it.
Accept Help: While you should not to try to exploit anyone who is willing to help, do not get to the other extreme and feel that no one can care better for your child than yourself.
Be committed but not shackled: A spastic child needs your help more than normal children do. But that does not mean that you have to spend every waking minute at the childs service. In India, where there are many disadvantages, there is one blessing. Members of the extended family can give support. Help can be hired. Parents should take time off for themselves each day so that caring for a spastic child does not mean complete bondage for them.
Train for social acceptance: One of the reasons for offering any child education and cultural training, is social acceptance. A CP child must be encouraged to mix with people, pick up social skills (picking up things in a super market, making a phone call, giving directions to get home
). More than pushing the child to do better in the classroom, parents must involve the child in acquiring social skills.
What You Can Expect from a CP Child
In a child with Cerebral Palsy developmental milestones will be delayed. Once it is confirmed that a child is a victim of CP the child needs the services of a communicative teacher and a special school rather than a doctor. At the special school the following groups work together:
- Special Educators
- Social Workers
- Speech Therapists, &
- The Family
Given the right integrated input the child may be able to achieve
- Independence in activities of daily living
- Academic achievement
- Economic independence in a sheltered workshop
- Gross & fine motor skills
- Social skills
Therefore do not lose hope. A spastic child can achieve a lot if given training and encouragement early.