The Aftermath of a Death!

I have restrained my comments on such topics, as I do feel that such circumstances are very complex in nature and may be trivialized by common banter. Today, I am taking the time to voice myself in the hope that varied thoughts can come forward. I do believe that complex problems like these need more solutions and here are my two bits.

I believe very strongly as a professional that my job is to provide solutions and unless I can do that I must not speak. It has taken me some time to read and process the many comments on social media and also reflect and try and grapple within myself about this difficult piece of news.

I am not a mother but I have a mother who has fought some very difficult circumstances to bring us up. I have seen her make sacrifices that many women even in today’s day and age with all the resources at their disposal would shy away from. I do believe that we as kids also have not done enough and probably can never do, because that is a heart that is too huge and too giving and when someone says that – a mother has killed her own, it is something that shakes me in the very core. And I know that it is not something that can be wrapped and presented in simple words like insanity, selfishness, hysteria or lunacy. And also, maybe times, values and morals have changed today and are nothing like what my mother believes and practices. So, that was another time for sure.

I, of course, believe that for a mother to kill her own child, would probably be the same as killing herself. And, also I am no one to judge whether it was a sane or insane act. I am here to offer possible solutions and ways that may help us move ahead and ensure that such circumstances are avoided for many in the future.

I am a professional who has and is still working very actively in the area of Autism. I work with teens and adults and it is nowhere near easy. Unlike, many professionals that I know of, I do not necessarily work just with the child. Because I understand that the difficulty touches all through the layers, i.e. – the inner circle of caregivers which then also ripples into the extended circle – my target area is spread quiet far. This also means that at some point or another I do stretch myself too far and thin too and one of the reasons that really pushes me back into my shell is a logistical one – time & lack of expertise to counsel care-givers.

Having said the above, I have also spent a good time working in Scotland where things are different and I have taken my time trying to work things in my mind to understand where the gaps are and it is those I would like to share –

1. The first gap is with ACCEPTANCE. Children with special needs do need special attention and that can’t be provided in our mainstream schools. It is not the fault of those schools that can’t work with them or do not do justice for the time that the student was there or even those that want them out due to their behaviors – as the school’s mandate is different and they also state that effectively. The communication is not being accepted by us and more so, not being probably understood correctly. Such an environment has it’s limitations and a parent must understand these limitations and take the responsibility of it’s repercussions, if they do plan to go that path. Most times, the parent and the system together take a call that is not the best for the development of the child.

I believe, that it is the social stigma that drives parents to insist on pushing their children into such systems which then fails and instead of looking at it realistically, we then get into the blame-game situation which serves no one really. Many schools abroad even though within mainstream still have a separate deck for children with autism and do not merge a child with autism in a class of NT’s as they understand the needs of the child and addressing that is priority. Inclusion does not need to be done at the cost of development, it needs to aid development.

If we do not put the priority as the child then frustrations will set in and the parent will directly have to face the consequences of the frustrations of the child too. So, please let go of the old ways and try and think innovatively – regular schools are not the solution, neither are the special schools who are not strengthened with the knowledge and resources to run the programs effectively. We need different processes and they need to be designed differently and for this one will need to think ‘out of the box‘, esp if we want to make a definite dent at Autism in India.

We need better curriculum plans, more effective teaching methods, and definitely an exclusive system for these children. If parents are willing to afford and encourage exclusive international schools where there are 12-15 students in a classroom facilitated by technology, creative arts, practical labs, re-negotiated curriculums with better designed textbooks and inspiring teachers, don’t you think kids with a different brain and many sensory problems with delays need better than that too?

2. The second gap is with TOGETHERNESS. This is a strong word and yes when a family is faced with difficulties, the chances that they will break are much higher. It is human nature. No one can thrive in misery and desperate situations.

But, when faced with adversity, it is possible to derive strength only from within and from igniting feelings of love, sacrifice, togetherness so on and so forth. I am aware that these words are very loosely thrown around these days but I really wish we spent more time experiencing them as opposed to staging them. Again, easier said than done and I do not mean to be judgemental.

The reality is that it is most essential for the two people (parents) to come together and find the strength with, of and for each other and make the effort to have faith in each other’s perceptions and allow for each to be ascertained and important in the eyes of the child and the world which will only make for easier battles. Battles will still have to be fought, but the guarantee is that they will be fought with ease and in the process will also make the two of you stronger and clearer.

3. The third gap is a lack of an ECO-SYSTEM. My workings in India have taught me that there is no effective ecosystem here. It is mandatory that all experts be used effectively for what they are good at. I do not see a parent or a professional support structure here. We need a circle for each child, and trust me – you will need a village to raise this child if you want to do it right.

Teachers, counsellors, psychiatrists, speech therapists, doctors, extended families and so on and so forth. This circle will only grow as the child grows. You will need more people and more friends and family around you. The nuclear system is the killer in such scenarios.

While in India, our culture promotes the big family ideas, it also means that those families may not necessarily be supportive which then defeats the purpose. So, we need a balance – a balance of a big village which understands that supporting means keeping oneself aside and always looking to the benefit of the community and ensuring that the children in future will be independent and live with dignity in as small or big a way.And this cannot be achieved by an individual, it is a burden that only a community can bear.

4. The fourth gap is UNCERTAINTY. The big tussle between the love that a parent senses for a child as opposed to the love that a guru has for a student. While, the aim of the guru is to free the individual and make him or her survive alone and in the process of it, one will go any lengths; the tussle that a parent who has the same aims but is trying techniques that may be counter-productive has always been another area of concern.

I see it very much a problem of the eco-system again, the parent is driven in many different ways and it can be confusing. This is a tough one because I always wonder how this can be solved. This is a situation that needs human beings to come together and work together selflessly along with maintaining a strong sense of respect for each other’s place.

Also, the connection needs to exist independent of one’s own emotions and or egos and takes either or to deconstruct, blend, dissipate or even collaborate when at loggerheads. It is a strenuous process and definitely an evolving experience. I share this bond with very few of my parents and it can be a very trying one for all involved.

As a professional I also believe that there is a strong need for us to review and reflect on our practices. It is mandatory that we never take it lightly or take it easy as we are dealing with human beings. Accountability and the ability to be true to one’s profession and it’s needs is key. I was taught in Scotland – Saam, Dhaan, Dandh, Bedh – all must be used in the process of reviving misery to magic. But remember it is magic that we must weave and that can never be done alone, the village needs to stand by you. And for that to happen, I guess bringing more clarity and transparency is the way.

5. The fifth gap is ACCOUNTABILITY & SENSITIVITY. Now this is for the larger community. But then I do not know how to start or finish here. Education is a business and has no accountability either. Until the larger communities do not understand the difficulties & disparities that exist there will never be complete solutions.

From the milkman, to the principals, and or the CEOs there needs to be sensitivity and acceptance for difference. This kind of acceptance was needed yesterday as today we are in a time where we have 1 in 66 children diagnosed with Autism. It will not be anyone else’s problem anymore, it will soon be our problem. So, if we do not devise better systems and facilities and solutions for it, we will only keep fighting a lost war.

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