The Beginning: A rocky terrain but light at the end of the tunnel!
As parents of a child with special needs, it has been an uphill task, especially two decades back when it all started. Inclusiveness was more a shrunk thought in the society than what it is now, says Neena Wagh
How does the trajectory of usual parents look like? A healthy child, admission in a good school, earning enough money to afford higher education and eventually seeing the child settling into his or her life.
Well, we were given a very narrow entry into a complex maze to crisscross over, barely able to find one opening, when we were faced with yet another wall. Yes, that’s how our journey as parents began when our firstborn was diagnosed with autism some eighteen years back.
We may not aspire for a perfect life, but we definitely strive for a happy life ahead. Each one of us come with our fair share of trials and turbulence and learn along the way to deal with them.
Few of us manage to stay afloat, but few of us learn to make the most of the adversities and learn to shine through them and as parents, that’s exactly we did and are doing. Our son, the beacon of light through all the dark phases of life, helping us to find that inner reservoir of strength to keep moving.
A shift towards finding resolves
I won’t claim that we found any magic formula or have amassed great wealth to provide our special need child with lifelong care, as a matter of fact, we are far from it. But I can say this with confidence that we have definitely forged ahead and today we have a clear vision as to what all is to be done to strengthen and prepare him emotionally, physically and psychologically before our eyes get shut. Yes, making sure that he is not left unassisted.
Let go of being in the victim mode to get empowered. Few things that I learnt along the way was the choice of taking this as a “why me” or “ok what can I do next” the situation, I chose the latter. Having a positive approach opened up more doors of possibilities.
Breaking away from mind conditioning
If you don’t accept your child as a complete whole, no one in the outside world will, so toss the label out of the window and approach him as an individual. Do not let his or her ‘condition’ limit your understanding of your child. For our idea of perfection is marred by our own limited perception of life. My child often surprises me with his understanding of the surroundings and people, his intuition.
Taking baby steps helped me keep things in perspective. While it’s good to have a long-term vision in mind, it’s the short-term goals which will help you reach there, be it keeping a record of milestones, therapies, education, functional activities of daily living and so on. There is simply no limit to the growth of your child; keep working.
Keep your support system strong
Above all, create a support system for yourself, for as parents of a special need child, we tend to isolate ourselves socially for fear of not being understood. Having a good support system keeps you strong as well as motivated.
Parenting of a special need child is a long haul indeed, find support, if no one comes forward then, you come forward and hold the hand of a fellow parent and walk together.
At SUBURB we strongly support rights of people with special needs. Through a series of articles, events and talk shows, we initiate awareness among people and are focused on building brick by brick an inclusive society not just for children but also parents of children with special needs.
About the author: Neena Wagh, the author of the article, is the mother of a twenty-year-old young boy with autism. She is a writer and founder of ALAP Trust (Assisted Living for Autistic Persons).