A child is often viewed as the inextricable glue that binds two parents in a lifelong relationship. The birth of a child embodies the joint hopes, dreams and aspirations of a couple. While children bring immense joy and immeasurable amounts of undiluted pleasure, parenting is also fraught with anguish and frustration as most parents realise within the first few weeks of a child's birth. The challenges of parenting take on new contours as a child progresses through various developmental stages. While parents of typically developing children undergo stress and strain in the process of rearing their child, the trials and tribulations are exponentially multiplied when a couple has to raise a special child.
How a couple copes with the fact their child has a developmental issue often determines the ‘potential' trajectory of their ward. The complicated tussle between the Norwegian authorities, the Indian government and the Bhattacharyas has taken an ugly turn with the parents separating recently and the father conceding that their son had a serious problem. While the outcome of this case is still uncertain, it raises substantive issues not only regarding cultural differences in parenting but also the exceptional demands that parenting a special child involves.
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Denial is the first defence mechanism of the human mind when confronted with an unpleasant truth. To be told that your child is deviant or abnormal is a severe blow for parents.
First, each parent has to come to terms with his or her own emotions regarding the child and all the hopes they harboured. An affective cocktail of grief, heartache and anger may surge through a parent initially. But nursing and holding on to these negative emotions prevents parents from taking proactive steps to help their child.
After coming to terms with the realisation that their child may not “fit in” in the conventional sense, parents may indulge in a blame game as they grapple with the unfair deck of cards dealt to them. Disagreements between spouses are common as each parent holds the other under scrutiny. Comments like, “Your side of the family has a depressive gene” or “Your lax parenting style is the reason our son is so aggressive” only fuel family tensions to inflammable levels. Further, when raising a special child, parents have to make umpteen decisions, especially when professional diagnoses and opinions can often be confusing, conflicting and even contradictory. If a child requires multiple services like speech, occupational and physiotherapy, how do parents juggle the various needs of the child? Should the child be mainstreamed or attend a special school? How do parents share the load so neither is taxed beyond repair?
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Counselling helps
At this point, when parents face multiple pulls and tugs — physically, cognitively and emotionally — it may be prudent to seek counselling for themselves. In India, many people are inhibited about talking to an outsider. The twin beliefs that problems should stay within the family and families can solve their own problems are misguided primarily because the family is also emotionally invested in the child and may not have an objective view of the child's best interests. Often, a special child's sibling also feels neglected, as all parental angst and attention is directed towards the former. When the family dynamic is thus thrown out of kilter, a compassionate counsellor may help ease the process of adjusting to altered dreams and aspirations.
As early intervention is key to treating most developmental disabilities, it is essential that parents do not deprive the child of the window of opportunity that age provides. While the human brain remains plastic lifelong, the younger brain is undeniably more plastic and receptive to stimulation. The earlier a child receives physiotherapy, speech or occupational therapy, the better his/her prognosis. Unfortunately, this fact is often lost on parents who prefer to deny a disorder either by changing a child's school or shopping for professional opinions that give a child a clean chit. Often, parents deny a diagnosis due to the stigma in our society. Besides having to face intrusive insensitive questions, parents have to tolerate unsolicited advice on how to parent their child.
Social sensitivity
As a society, we need to cultivate greater sensitivity to disability and view it as another form of difference. While we are a generally pluralistic society in terms of language, religion and culture, we need to broaden our spectrum of acceptance to embrace those with different needs. Special children need parents as much or more than typical children. Given a supportive and stable environment, the right treatments and warm acceptance, these children can flower and flourish in truly unique and astounding ways. Comparing parents to bows and children to “living arrows', the Lebanese poet Kahlil Gibran writes, “For even as He loves the arrow that flies, so He loves also the bow that is stable.”
E-mail: arunasankara@gmail.com