It was the ancient Romans and Greeks, probably the English as well, who gave birth to the concept of the legal will, wherein, a human was able to decide how he disposes his remaining estates after his death. Seems legitimate enough for one to decide what happens to his inheritance and earnings after he/she passes away.
However, a certain question, arising from the same concept, but of higher stakes, still awaits its answer.
Psychiatry, often the neglected and stigmatized child of Mother Medicine, fosters another very special child of its own, “Child psychiatry”.
With a child, are born thousand dreams, which each parent bears for their little one. A new breath of air, a fresh chance at a story, a whole new life of possibilities.
Cut, to the child psychiatry OPD where parents/caregivers alike, flock in with distressed faces beholding hopeful eyes. Accompanying them, the children with special needs, some of the sweetest souls on this planet. Gods own messengers as children are known, these are children with messages of a different kind. Messages which humanity might not get for another eternity.
Assessment after assessment, too often an interview ends on the same mini-nihilistic note. A substantial proportion of those children, will not reach the so-called and defined ” normalcy”. The same must be duly conveyed to the so hopeful.
It’s easy as a professional to pose questions at parents as a part of the assessment. But when the queries come in, the breath is short, and words are very few to choose from, as hopes after hopes are dashed.
Intellectual disability (formerly mental retardation), autism spectrum disorders, childhood onset resistant psychosis, just to name a few. A myriad of illnesses culminating into deep anguish. Inability of self-care, inability to read-understand-recall basic syllabus, deficient communication skills, loss of touch with reality and much more. Most of these kids will be mired with one or more of such devastating disabilities.
“Mera bacha normal kab hoga?”
“MRI, CT karwa lete hai, pata chal jayega bimari kya hai”
“To kya yeh kabhi normal nahi hoga?”
“Aakhir bimari kya hai? Kyun hui yeh? Ilaaz kya hai iska? Theek kaise hoga/hogi? ”
This, and a lot more. Questions, asked with the highest of falling hopes.
The prospect of reaching within the standard deviation of normal, too bleak at the moment. Maybe, they were never meant for the same; maybe they were meant for something special, too early right now for humanity to comprehend.
One should not get mistaken at this point. Therapeutic nihilism shouldn’t take over. With regular multidisciplinary treatment, there can be substantial improvement in the quality of life of the patient and family and furthermore, some kids may go on to do better than expected as well.
All said and done, it’s another question that troubles the most. After all is discussed, accepted and digested, in that order, one fear demonizes each care giver, like no other.
“Docsaheb, abhi to hum hai, sambhal lete hai. Ab itna hi hai ki kisi tareh khud ka khayal rakhna seekh jaye yeh. Ek hi chinta rehti hai ab, humare baad iska khayal kaun rakhega? Humare baad kya hoga iska?” (“Doctor, what after us?) …is too often a moaning heard in that OPD clinic, often leaving the other searching for words, even speechless at times.
There are multiple provisions for such children, mentioned in various constitutional papers. But read that again, ” provisions” and “papers” don’t equal implementation. It’s this gap between provision and implementation, that breeds one of the worst kind of apprehension humanity can bear. Who after all, will take care of someone, who has been so ardently dependent on another for the most basic of needs for most of his/her life?
In an interdependent world, where even the fittest can’t do without help from another on a daily basis, the prospect of having no one left to care for your so-dependent dear one can only but lead to dreadful suffering.
Most patients and family members of this kind, belong to the economic strata where they barely manage to feed themselves. What plight it must be, to barely make ends meet and on the other hand have all dreams for self and child broken; to have nothing but just one hope in life of a secure future for the child. That hope, which breeds continuous despair.
I hope, there was a provision for such “prized assets” in the wills, which without discrimination provided for the basic rights each one deserves and most importantly, which could answer the question “Doctor, what after us?”