Overcoming the Uninvited Disability Experience

Blog by Dr. Samuel N Mathew
Executive Director, National Institute of Speech & Hearing (NISH), Trivandrum
Director, Regional Institute of Physical Medicine & Rehabilitation (RIPMR), Irinjalakuda

I come across a lot of parents of children with disabilities. They come to meet me as their children may be students at NISH either in the early intervention programs, students in degree classes, customers who come to the clinics or it could be people who come for advice.

I am aware that all of them certainly have gone through a severe trauma as they found their child has a disability. They never expected this to happen to them. It takes time to accept the unexpected, unwelcome fact while they were waiting eagerly for a perfectly healthy, beautiful child. The internal turmoil comes out and affects the daily family life, workplace performance and social life. A period of depression is natural but in some cases it could also be anger – at self, spouse, God or others around them. While the depression may force one to go into a vortex of self-pity and guilt, additionally it may affect the care for other children and family. Spiraling anger could destroy family and social relationships, or it could cost the person his or her income generating job or it may lead into violence. So it is obviously important to somehow get out of the dangerous vortex to go on with life.

Acceptance of the reality and moving on is the best path to get back into a normal life. However It is easier said than done. Supportive family and friends can be good catalysts to nudge the parents into acceptance. The journey from trauma to acceptance can be a bumpy ride. The period can be a few months to years. Each parent is different. Even the husband and wife who are sharing the experience with the same child may have different periods of recovery. In worst cases one may not recover too. The bottomless pit of despair and negativity should be avoided at all costs. It is true that in such situations the loving support of a close relative or friend can make all the difference to turn around and look to the future with hope. Professional counseling is certainly good, but I have felt that love and encouragement from family or close friends is a sure shot and anytime a lot better than professional, uninvolved counseling. I know others may differ here, and that is understandable.

Acceptance of the child’s condition can have several positive effects. The parents could become supportive of each other and encourage each other when one of them periodically feels depressed or overwhelmed. And believe me, this is a possibility. None of us are immune from the off-the-cuff comments of a relative or neighbor or even a casual on-looker in a supermarket. They may not have meant anything much, but a comment can bring back long lost thoughts or open up mental wounds that are yet to heal. A touch or a hug from the spouse may get you back on track. A shared intimate moment or consolation from the partner could be a balm. Through this experience the couple can develop a strong bond of love and commitment. Also this will enable the parents seek help from others. They could turn their energy to help others who are entering similar experience and give guidance during this turbulent period. They could plan for early intervention and thus prepare their child for future. So getting to the stage where the parents are reconciled to the situation is important to make life more or less as enjoyable as the pre-trauma period.

This is about the parents of a child with a congenital disability. The child itself is oblivious of the situation as it grows. But it is a totally different scenario when an adult acquires a disability. Somebody who had a regular active life can acquire disability in hearing, speech, vision, mobility through accident, or disease. The trauma of acquired disability is an altogether different matter. I will write on that later…..