“Never a day goes by that I don’t try,
Seldom a moment comes by for me to cry
Neither a day nor a moment comes by to defy
The cry, which I try to defy until the day I die.”
I am a father to a special child on the autism spectrum. While I know how hard it is for me, I can’t help but wonder how much harder it is for my son. I always ask myself, “How do I find my son in me? To understand and build a bond tighter than a knot?”
April is Autism Awareness Month and I would like to share my journey with my son, Haans, who turns five this year.
Building an invisible bridge over a virtual fence
As I watch him grow at lightning speed, his littlest achievements are celebrated with the greatest joy. I try not to say, “don’t do this” or “stop doing that.” I have tried various methods of exuding my authority over him, but that just creates more boundaries with him. Does he surround himself with an invisible fence? In addition to various challenges, the fact that he is non-verbal is something that keeps me up at night. Communicating effectively is always a challenge. It just breaks my heart to recall how I used to raise my voice at him before he was diagnosed.
The learning process is not limited to learning about him, as he has become my teacher as I learn to communicate with him. I’m now sitting on his side of the fence, trying to look for answers. Simple daily activities are challenging. I find myself gobbling down my meals when we go out due to his restlessness. However, with patience and persistence, our outings these days are much better. He knows how to wait for me to finish my meal. One of the biggest achievements yet.
The Language of Love Through Expressions
We both share one true passion – long drives to nowhere. He loves it, to an extent of course. I’m still trying to figure out why certain routes trigger a small meltdown. What does he see or feel? I have no clue yet, but I have faith that things will improve sooner or later. There is an indefinite time frame set for children on the spectrum. I have heard of stories where they just wake up one day and stop what they did yesterday. As the phrase from the movie goes, “Life is like a box of chocolates, you never know what you’re going to get.” My favourite kind of chocolates are those with raisins, and I’m still waiting to be surprised with that.
Haans has taught me that I need to change my tone and my facial expressions as he looks at my face to see if I’m still upset while he cries in defiance. It hurts me so much to see him look upset. It’s like looking into a mirror. So, what does that tell me? He is trying to say that this is the only way he knows how to communicate. Oh, my Haans! How much you love me, how much you teach me, how much I hate myself for not being able to have understood you earlier.
The rough rollercoaster life I had growing up doesn’t even come close to what my son is going through. He may want to say so much to me, but he doesn’t know how to. Hence the body language and expressions become lesson number one.
Dark Clouds Lurk at the Back of my Mind
I am a mere mortal like everyone else, with an invisible expiry date. Will my son ever make it out to lead an almost normal life? Will he be able to fend for himself? Will he ever raise a family of his own? Can he handle a relationship? Can he handle rejection, disappointment, falling in and out of love, will he be bullied or looked at differently all his life?
There are so many fears that go through my mind constantly with no end in sight. I pray for my fears to remain just that, fears that don’t turn into reality. Will we be able to see him through before our time is up, to see him lead a fulfilled happy life? All of my fears remain question marks as I cling on to the hope that there is a rainbow behind every dark cloud.
A Sparkling Rainbow Awaits
My hopes for him are endless, just like any father out there. Every day without fail, I pray that he continues to develop. I hope he improves his ability to understand the world around him and to master living skills so he may be independent. I hope he will be able to differentiate between right from wrong, evaluate the good from the bad and communicate verbally.
My son has undergone three surgical procedures to date, and he is not even five yet! A tongue tie release operation, a scope to remove a coin he swallowed, and the third – a most harrowing experience to remove adenoids and fix his glue ear. This procedures has improved his breathing and hearing dramatically! Every day we hope that his speech develops too.
His cheekiness is just adorable – from pretending to sleep, to suddenly climbing up on me while I’m taking a nap; or when peeking from the shower to see if anyone is watching, and then flooding the shower area at the same time! What I have come to learn is that I must stop creating boundaries and try my level best to be in a good mood the entire day. Yes, even if I have a bad day at work or have had challenges coping with my health as a cancer warrior.
My son has made me venture beyond my comfort zone, to see myself through his eyes. I will continue to build an invisible bridge across his virtual fence. It may be a long journey, but I will never stop trying.
By Narajeevan Ramaswamy
Nara is a cancer warrior and father to a boy with autism. While the last 3-years were filled with cancer treatments and procedures, he continues to run his businesses. He also advocates strongly for cancer patients and counsels fellow warriors like himself.
Nara is husband to our regular contributor, Desiree Kaur.