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For parents having a child born with a disability is a life-long adjustment. The siblings and other family members are also affected. Families must learn to tolerate, accept and hopefully celebrate children who are not what they originally had in mind. Communities also play a part by accepting and providing opportunities for the child to lead as normal as practically possible life.
Expectant parents usually dream that their new baby will have some of their features and grow up to share their values and interests. But what happens when the baby is very different from them because of a disability? Disabilities may result from a number of factors. How do the parents cope with raising this child, develop a bond of love and appreciate the child with their own individual characteristics? Any new baby will change the family dynamics, but when the child has a disability, the siblings and the parents share the grief and often the responsibilities for care of the child. It’s important to know how the child with the disability feels about their restricted life.
The birth of such a child usually follows five stages:
- depression and
Parents usually react with psychological stress, a feeling of loss and low self-esteem. The child is “disappointing” and a “social obstacle” which often leads to shame and embarrassment. Parents may direct their anger toward others, their partner, the doctors, or other families who do not have this stress. Some parents bargain with their higher power e.g. “If you heal my child of the disability, I’ll quit drinking” or they may feel guilt, that the child is a punishment for a past sin. They may overly protect this child who is a symbol of their failure.
The frustrations of finding specialised support, managing added costs of care, maintaining social communications may mean that the parents aren’t able to communicate with each other. It is usually the mother who assumes more responsibility, so that the father often feels neglected by his wife who is busy with the child and so the problem manifests.
In a recent study in the US, it found that the divorce rate was ten times larger in families with a disabled child than in the general population. Whether the child is placed in an institution or kept at home, the grief of the loss of an expected normal child is a life-long chronic sorrow. Parents need to talk with a competent professional about their reactions and strategies for coping.
Managing the other siblings
Siblings often report that they are ashamed or embarrassed by their sibling with a disability and don’t have the words to explain to their friends why their sibling is different. They often report that they feel neglected because their parents are overburdened with care for their sibling. However those children who have open communication with their parents are better at establishing relationships with friends. Later in life the sibling often feels that they have gained something special because of the responsibility placed on them and they feel they understand that people are different and that they have learned how to manage difficult situations – clearly a much better outcome.
Many children are born with a disability because of genetic, environmental or unexplained reasons. Families who have a child with a disability will no doubt incur emotional and economic hardships. The parents and siblings need to express their disappointment, anger and frustrations and to learn to accept and respect the child for his own character. There’s an African saying: “It takes a community to raise a child.” Communities can help to provide access to transportation, jobs and social activities and learn to know the child by his character, personality and skills. Our professional staff are able to offer support and relief to the children and families with a disabled person which enables them to keep the person at home and have as close to normality in their family with minimal stress.