|Photo Credit : Soumi Haldar
My beautiful three and half-year old nephew is a ‘child with autism’. A phrase not unfamiliar or uncommon. One I did not expect to use for a loved one. The unknown, awfully scary world of Autism Spectrum Disorder (ASD) has hit closer to home.
Yes, little K is on the ‘spectrum’. Supposedly on the moderate side. His parents (my brother and sis in-law) knew all along something was amiss but they hoped for the best while preparing for the worst. The worst now has become their reality.
A painful reality to say the least. A reality in which they are struggling to find solutions, answers to improve or better their son’s life. Every day is a mystery. Some days are uneventful, while others give them a peek into a future that is seemingly dark and terrifying.
He doesn’t call me papa, my brother tells me on the phone. A refrain I hear often. I hear the quiver in his voice. I feel the agony in it. That of a parent, a father longing for that special connection with his son. A connection, a simple gift we often take for granted. A gift, my brother has been deprived of thus far.
I am told K’s sleep schedule is off. That he has speech and socialization issues. That he is a picky eater. That he is happy in his own little world. One that no one has been able to access. He is smart. Used to have a vocabulary of 500 plus words at a very young age of two. But words he keeps to himself. Words that have to be pried out of him by the speech therapist. He is happiest when he is alone, away from the outside world. One that is alien, unnerving to him.
I speak about him regularly with my kids. I want them to know how special their younger cousin is. And no matter what the future holds for him, that it is important to show our love for him. To protect him from the evils of this world. They nod understandingly. They are trying to make sense of it all in their own way, adding their own interpretations to this unexpected, unknown situation. I know they understand the gravity of it. Mama, aren’t you glad we are not childs (excuse the grammar) of autism? asked A, my 6-year-old just this afternoon as we chatted about their sweet cousin.
I cannot stress how fortunate and blessed hubby and I are. To have not one but two healthy, flourishing kids. A sniffle here, a cough there, a few days of a stomach bug are all we got to bear with. Yet, we grumble, complain, become so irritable, impatient having to be in that predicament. A temporary predicament, if we put things in perspective.
We got lucky. We got temporary. My brother and sister-in-law. They are not. They are in for the long haul. One riddled with uncertainties, some unfathomable, terrifyingly scary.
They say God gives you only what you can handle. Seriously?
To me, this phrase we use so often to rationalize, to allay our fears is nothing but C.R.A.P.
We are all tested. And let’s face it. We need to be from time to time to enable us to acquire the much-needed perspective on things. But this test, my family members are going through doesn’t really make any sense. One of life’s unexplainable tests. Along with them , there are many who are fighting this tough battle. I cannot speak for any.
I cannot help any, including my loved ones. And I feel frustrated, angry at times. I see beautiful K and my heart breaks into countless pieces. I feel helpless. However my helplessness, my inability to do anything pale in comparison to his parents. But they have accepted their reality graciously, practically. Everyday is nuanced for them . They have their good days. They have their bad days. This is their life now.
He arrives in two weeks for a visit. We are excited to see him-it’s been several months. The kids are thinking about ways to make him comfortable, safe. He loves yogurt, we will take him to the yogurt place, chipped in D, my son. I am asking my brother to send me a list of items I need to have in place and in stock for him.
We are getting ready. We don’t know what to expect. But we will manage. We will sit back and follow little K’s cues. We will enjoy him. Do our best to make him comfortable, loved.
Stock the fridge with nothing but yogurt if need be. It’s the little things that matter.
After we published yesterday’s story, Sukanya Bora, an avid blogger herself, left us a heartfelt comment and a link to a story on her blog. It was about a very special boy, her nephew, who is also a child with autism. While most have been hesitant to share their story (and we can understand why), Sukanya was very forthcoming.In her own words “Autism needs awareness…and we should do our bit.”
Her story reflects on the struggles of a parent of a child with autism but also delves into how graciously they have accepted this fact about life, with the adequate amount of pragmatism that it warrants. We hope it inspires many more such parents.