John and his wife Assuntha, were overjoyed when they were blessed with a cute little 9-pound baby boy in 1996, after 6 years of marriage. They christened him Marian, and he became the center of their lives, being their first (and as time would reveal) their only child.
His milestones were delayed. But they did not think anything was amiss. But as time went by, they found it increasingly difficult to communicate with Marian. Also they started noticing odd/abnormal behavior which they found difficult to comprehend.
3 years later in 1999, their world was shattered when they came to know that Marian would always have special needs. He was a challenged child with brain damage. It was a very traumatic experience and the shock still echoes in their hearts and minds, though with time they have accepted Marian as God’s ” Special Gift ” to Them. They realized, it was God’s plan that Marian found them and they found Marian.
Their world began to change. It now revolved around Marian and his needs. At first, they found it difficult to understand him and they noticed that it was even more difficult for him to understand them, and their expectations of him, even in his requirements for daily living and personal hygiene.
Communication was stressful both ways – they realized that – and their patience and their sanity were stretched to its limits – and maybe his too. But they were so wrapped up in their own anguish, they failed to take this into account in their relationship with him. It was Almighty God that helped them cope. “He put them through it and He would pull them through it” was their only thought and indeed their saving grace.
In these kinds of situations, family life suffers tremendously, tensions arise between spouses, health takes a severe beating, focusing at work becomes extremely difficult and almost next to impossible and just living a normal life is a distant dream, forget about aspirations of moving on to the next level of professional and family life. And that’s exactly what happened with John and Assuntha and I know this first hand.
As time went by, John and Assuntha learned to cope with the challenges, and with God’s grace, they have learned to live their lives almost as normally as Marian. But he still needs their support. He always will and that is what gives them sleepless nights…
Marian, as things stand today, will certainly outlive them, and even if they provide for him financially and secure his future, who is going to help him manage it and support him, as he cannot manage himself independently? Who will take care of Marian after the Lord calls his parents to His home? Can his parents get any answers? They asked me. I had none. But they themselves had a lot of ideas on what needs to be done to make the world of mentally challenged children/adults and their parents a better, more secure, and loving place.
Having interacted with the world around me for more than a while now and having experienced its idiosyncrasies and attitudes vis-vis special/differently-abled/multiply challenged children/adults myself, I have added a few of my own to theirs and would like to share this amalgamation of thoughts with you.
I do hope the government and society do give them some consideration. I for one would love to assist in any which way, to bring them to fruition for the greater good of these children /adults and society in general.
THE GOVERNMENT
- Just as basic education is recognized today as a right of every Indian child, Special Education must be recognized as a right of every Indian Special Child. Our legislators need to address this issue seriously and on an urgent basis.
- There must be a concerted effort on the part of every regular school to integrate Special Children into the mainstream wherever possible and/or create a parallel system of special education in every school for such children. There are multiple advantages – Normal children will be sensitized to their differences at an early age; they will be able to understand their needs better and Integration into and acceptance by society will be that much easier.
- Either the above or the number and quality of Special Schools need to be greatly enhanced to make it a meaningful institution addressing all the issues of these Special Children from ” Womb to Tomb ” as the saying goes. This includes residential facilities and the like.
CORPORATES
- Job reservation quota needs to be extended beyond the physical handicap quota currently available in government services. There may be very little productivity, and perhaps this will be an additional capacity burden on the corporate, but it will go a long way in helping both the challenged adult and his parents deal with this undoubtedly unasked for challenge. The quota should realistically reflect the percentage of these individuals and extend to all corporates – both Public and Private. Alternatively, Corporates must be asked to support, such individuals, to some extent from their CSR Funds. The methodologies need to be worked out.
- Corporates can greatly enhance the productivity of employees with Special Children, by recognizing their special parenting needs and addressing the issue constructively including sponsoring therapies, education, and residential services for these children of their employees. This will be really helpful to so many parents struggling to make ends meet. Of course, this would be difficult in the unorganized sector – but that’s where the government can step in through its DBT schemes.
- Corporate-sponsored workshops for parents on means of coping with the stress, strain & tension of parenting Special Children is a strongly felt need. Such workshops could be designed to also benefit the general parent community. The Government health departments and organizations can handle these for the informal sector.
PROFESSIONAL AND MEDICAL
- Professional support in the form of qualified counseling is required for parents to learn how to manage the child’s needs in an appropriate way, relative to his challenges, and prepare for (secure) the child’s future. In cases where the Special Child is the Only-Child, the parents too could do with help to secure their own future. This would include financial, psychological, other advice, and hands-on guidance. There is no psycho-social support system currently available except in the cities – they are unregulated and their costs prohibitive. This needs introspection and remedial measures urgently. The Rehabilitation Council of India / the Government needs to play a major role in this regard.
- The medical field must focus on how best to prevent these occurrences through more medical research in this field. Can the recent advances in human gene research, ensure that a normal child is born every time a baby is conceived?
THE COMMUNITY
- Parent support groups, which are widely present abroad are non-existent in India. The sharing of experiences, knowledge, and help within these groups would go a long way in alleviating the problems faced by parents of Special Children. NGOs can take the lead here.
- An attitudinal change in the way society perceives Special Children is imperative. They need to be accepted as an integral part of our community and rather than be shown sympathy, they need to be respected for their rightful place in our society. This begins at home and in schools and the point made at the beginning of this list of suggestions is clearly relevant to this cause.
- Trained domestic maids and appropriately educated nurses could help the household coping with the added responsibilities and could provide much-needed support for the family. Their availability is limited and costs prohibitive. A focus on creating this stream of professional persons is the need of the hour. However we must understand that not everyone can take to this profession. Indeed it’s more of a calling than a profession. However, if one can earn a livelihood out of ones calling or passion, the world will be a much better place.
- Sensitizing the world towards this issue is a must, which will help in enhancing the confidence of and be a source of encouragement for the parents. This would involve the active participation of the media – no matter their core focus. After all its in public interest.
THE BURNING ISSUE
- A child with special needs will grow up to be an adult someday, and with time, his parents and siblings, if any, will pass away. Residential / Daycare homes where they can be taken care of holistically for one day or more, on a temporary (reasons could be parent’s ill health, travel compulsions, etc) and even permanently in cases where the kin are absolutely unable to take care of the child/adult, is the burning need of the hour.
- An Old Age Home for Adults with Special Needs – it’s a radical thought but absolutely necessary. It’s a community requirement, a governmental obligation to its people, and something that all Non-Governmental Organizations must think hard about.
In closing, I’d like to quote Shakespeare. “Never play with the feelings of others because you may win the game but you may risk losing the person for a lifetime”.
