changemakersaathi parentsaathi

My Journey So far..

Getting your first born diagnosed with Autism- a lifelong condition which would require support of various degrees to deal with the day-to-day life is a daunting news for the first time parents to say the least.

Like thousands of fellow mothers, I too went through a haze in the initial years, with flurries of doctors, therapists, this test, that test, running from pillar to post, trying to make sense of life, and this mystery called Autism, trying to find ways and means to “get through” to my son Ammogh.

Yes, that is the name of my son- Ammogh which means Lord Ganesha or “the precise way of doing a thing”. Both the synonyms sounded like irony to me for neither hearing the ominous news of having your child labelled with a strange disorder felt “shubh” neither were we- as parents, able to figure where to begin in the first place, forget doing the precise thing!

Twenty odd years have passed ever since we got that diagnosis, and a lifetime of learnings which has enriched us as parents. In these years I realized that there is no end to the human potential, irrespective of any label- special need or otherwise.

For a person who could not sit still, eat on his own or hold a pencil, today my son has not only crossed all those milestones but is also learning to live independently with minimum support. As mother, I too have learned to be far more patient and compassionate to fellow human beings. I guess to do things precisely one needs to be persistent first:))

So, lets take a 360-degree view of our situation as parents of special need children.

What does a single mother of a special need child want? – Support.

What does an individual with special need want? – A peer group, opportunities and equal rights.

What does a family with a special need child wants from society? – Understanding, empathy and inclusion.

As a society there are gnawing gaps in what we as parent’s community expect for our children and what is offered to us, we are living on the margins and not at all happy about it. General ignorance, taboos, lack of good policies, governmental apathy, commercialization of education system which does not care in investing time on our children are few of the issues which can be rattled off at any given time. Stress is compounded by the lack of social, financial and emotional support.

But enough of that! For the list of woes is endless, so let us begin afresh!

I was always week in math but one equation taught in the school is still relevant to me which is – minus plus minus equals Plus!! I know that the challenges faced by our community are humungous and one can easily get overwhelmed by it! Creating support system for each other can bring a lot of relief . “दुख बांटने से कम होता है और सुख बांटने से बढ़ता है

I realized very early in my life that in order to carry on this arduous journey I will have to build support system for myself as well as my child, so I started working towards it -one step at a time. By talking to a random stranger staring at my son, sensitizing the neighbors in the immediate vicinity, by writing on various forums, joining forces with fellow parents, forming groups, association, becoming part of the larger parent’s organizations, making my voice heard, by becoming voice for the voiceless. For I believe in one thing- if you do not get support then become support for someone and the universe will send someone for you.

Four years back with my husband’s steadfast support I founded a Trust called ALAP: Assisted Living for Autistic Persons with the purpose to look after persons with Autism who would require lifelong support in some way or other. Today we provide short/long term respite to the families in a residential setting, teach independent living skills to the residents, providing them with all kinds of opportunities for their individual growth. They have their peer group, an inclusive space set amidst the mainstream where they get to interact and engage with people from all walks of lives, they are very much “visible” and are contributing a great deal in sensitizing the world about themselves.

The ALAP mothers get together, go for lunches, let their hair down, are lot more confident as they too are equally involved in capacity building, of their children as well as each other’s. For inclusion we must reach out to each other within our own community before we expect anything from the society at large.

So, to build a community here are the baby steps that can be taken:

Look around and see if there are few parents in similar situations, form a group;

Meet regularly, share information, experience, resource, and knowledge;

Become support for each other, if need be, baby sit each other’s child, give respite to fellow parents;

Travel together, go for outings together as you will get the comfort of having each other’s support and understanding in a hostile or not so understanding environment, be ears and eyes for each other’s child. As they say -safety in numbers;

Invest in good support staff and nurture them equally well, for you will always need them more than your relatives;    

Seek guidance from senior parents, for they have covered more miles than you and their wisdom and guidance can make you understand your child much better;

The truth of the matter is that we cannot gulp life in one go, we must savor it sip by sip, assimilating, digesting it slowly. Yes, it gets overwhelming, I learned to take a break from the daily humdrum time to time, away from the daily stress and found my “me time.” In that process I discovered my own inherent strengths and rebuilt my life with new fervor.

I do hope my journey and my learnings resonate with you all in some way or other and you too discover your own super powers, for only a happy and empowered parent can build a steady future for his or her special need child.

More power to us all!!

Neena Wagh

Founder- ALAP: Assisted Living for Autistic Persons

Writer, Playwright, Poet, Filmmaker, Translator