– Rapolu Ramakrishna Murthy, Director – Manasa Institute of Child Health & Disability Studies
The emotional and psycho-social aspects of parents of children with disabilities are well studied and documented. To any parent, conceiving a child with disability is an unexpected phenomenon that sets an unplanned journey of life.
It is a blow when a parent comes to know the reality for the first time that his or her child has a disability and often results in an intense emotional trauma. During the initial stages when the child is diagnosed of a particular disability, the anxiety and depression among these parents may even demand the psychological care and medical treatment. One of the first common reactions of the parent is denial when a doctor or a therapist communicates the child’s condition. As the parent starts digesting the fact, the denial is replaced by fear, guilt and grief. “Why has God done this to me?”, “why my child?”, the parents weep and question the God of their faith and themselves.
During the course of approaching the solution, the parent is submerged with the confusion knowing upon that there is no simple and quick remedy available for the child’s problem even in the time of ultra-modern technology. This results in severe frustration. Gradually powerlessness to change the reality and the difficulty of accepting the situation makes the parent more disappointed. Unbelievably at this stage parent starts rejecting the child. Often serious rejection results in the parent to wish ‘death of the child’. It becomes very troublesome to handle this alone as the parent is already overwhelmed with a lot of emotional stress.
At this juncture, the family members, friends and colleagues need to empathise with the parent and offer emotional support voluntarily. In addition to the clinical intervention, it is very important for the doctors and rehab professionals to counsel these parents by providing facts and information on the scope of improvement with as many examples as of people who became successful despite their disabilities. It is also imperative for the clinician to explain the concept and philosophy of ‘inclusion’ and barrier free environment including ‘attitudinal barriers’ to change the perspective of the parent and family members towards the child with disability.
Providing information to parents on rights of the persons with disabilities and government policies, schemes and provisions meant for the welfare and empathising with them may help the parent feel that he or she is not alone and helpless in the journey of parenting a child with disability.