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Autism

Henry : The Special Visitor

Henry is nine year’s old. Like most children his age, he loves to play. But he prefers to play by himself on the bars in the school playground. He flips on them, hangs upside down and catches the sunshine. He likes to walk and wander around the school. He stops in front of every classroom and intently watches the art display on the windows. He smiles a lot but does not like talking as much.

It was my day of volunteering in the third grade classroom. I had crossed paths with Henry while picking supplies from the office and making trips to drop them in the classroom. Amidst the cacophony of a school recess, I had noticed him pay attention to everything that other’s were not paying attention to.

Continue reading “Henry : The Special Visitor”

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A Special Boy


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. 

When Ignorance Is Not A Bliss

I am part of a Facebook group where I first heard about Chatoveracuppa. I have been very interested in some of the stories. One day someone posted a link for Light It Up Blue and asked if anyone had a story to share about Autism. I wanted to share my sister’s story because I do not want others to go through what we went through. I do not know how to write well so please excuse me. But I am sure my story will touch you.
We are two sisters. I am very close to my elder sister. She is married and has a four year old child. She is a very beautiful child.  When she was born everyone was very happy in the family. But my sister felt something was wrong. Everyone told her she was thinking that way because she had become a mom for the first time. When my niece was two months old, she did not smile and look at any one. My sister got worried. But everyone again said the same thing to her. By the time my niece was 1 year old she was not doing many things like other babies. My sister was worried about the milestones. The doctors said everything was fine. Everyone in the family kept saying everything was fine.
But they were lying to my sister. They spoke when she was not around that the baby had something wrong. A lot of pujas(worship) were done. Priest came to bless the child. They said no black in the house and everything was thrown out. My sister started fasting for 3 days a week. She walked barefoot with her husband to a shani (Hindu God)temple every Saturday. This kept on going for 6 months but no change happened in the child. At that time I was in a far away hostel so I came to know about all this over the phone only. Then I got a job in my home town. When I returned my sister cried a lot and told me everything. I felt very angry because if there is a problem we need to see specialist and not priest. In India whenever there is a problem with a child we start thinking the child is cursed, handicapped, some say mental problem. Everyone talks about future and what will happen. But for future, we need to do something today.
I convinced my sister and her husband to leave all fear and worry about people and get medical help. After lot of tests, therapies my niece was diagnosed with autism at the age of 2 year, 3 month age. Autism has a very wide range /spectrum. She has autism that affects her speech, social skills and some of her motor skills. I thought my sister will be very sad with the diagnosis. But she thanked me and said now she did not have to listen to anybody and follow anything superstitious. For last two years, my sister and her husband have concentrated on my niece’s therapies, exercises, diet and her treatment. My niece is 4 year old now and can eat on her own and do many small things, talks words that we understand, loves to play in the park and with blocks and water. She does not like strangers or crowd or lot of people, loud noises and bright light. She is very affectionate to people in the family who love her.
Our family has still not accepted her. They keep pressurizing my sister to have another “normal” child. My sister says she has a normal child. Some blame her for my niece. But autism is not genetic. No doctors could tell us the exact reason of what causes it. There is not one cure. You have to try many medications, many therapies but if you love the child and work hard with your child, the child will be able to do anything.
I am writing today so that people stop all superstitions, stop blaming the mother always and learn more about autism. It is not a mental problem; no one should call it that. There are very small, beautiful cute little kids who have autism. You cannot even tell by looking at them. It is not a curse. You can help the child with medical help, therapies and accepting the child.
I hope my story will help some other mother like my sister to ignore everyone and do the right thing for their child. Don’t be shy. There is nothing wrong if your child has autism. If all of us start thinking openly, it will be easy for the kids with autism and their parents.


Earlier this month we had  posted “Light It Up Blue“. We also sent requests on forums for parents dealing with autism in children to share their stories with us. Stories that would help another parent open up and talk about autism, their struggles and inspirations. We did not hear any until this morning, when this story landed in our Inbox. Please take a minute to read it. There is still so much of ignorance and alienation in the society that it will surprise you. A lot needs to be done to break out of it. 1 in 68 is just a number. Acceptance is a gesture not a number. 

As per the request of the storyteller, we will respect her privacy and publish this anonymous. Only if there was more support in the family and within the society, she may have written this under her real name. That itself tells you how much more needs to be done.

Light It Up Blue

Parenting is not just a joyride.  Though we enjoy it and though it’s worth every bit, it is a journey where you can never give up. You have to keep trying for your children, you have to help them keep trying and neither one of you can ever give up.There are times when exhaustion takes over, the mind seems to draw a blank at everything and right then when we are about to collapse there will be a new parenting challenge. But the rewards are priceless and that is the only reason why we all fall for it, all so willingly. Isn’t that true ?

They say it takes a village to raise a child. It is an engaging and responsible task for a parent. No wonder whenever and wherever you see parents meeting over coffee or dinner, you will find them talking about their kids. Talking about challenges and joys of parenting almost in the same breath. Kids need attention, love, affection, time and patience from a parent. They need some of that and many other important things outside of home. School, friends, fun, play, chat, hugs, giggles, laughter are part of the social acceptance of their existence.

All kids have these needs. Some kids are special. So they just have a bit more of needs right ? How does it change things ?  Should it change things ?

It makes parenting more challenging for sure. Only a parent with a special needs child will know what that statement really means. But a parent never compromises with his/her responsibilities or love. Only we as a society do. 
Yes, we have our biases, taboos and notions. All of them are inexplicable. Of all the challenges, I believe the most difficult ones that a special needs parent deals with are societal acceptance and ignorance. We spoke a bit about this in our post, “Thank You”.

We talk about it today again. We can choose to live in a bubble and keep thinking, “This has not happened to me. This cannot happen to me.” Or we could decide to be a bit more real, compassionate and responsible. Talk within the family, within your friend circle, at work, at your kid’s school. Talk to a parent with a special needs child. Help someone you know come out of the closet and talk about it.  Educate yourself and show your compassion, show your understanding.

The more we openly talk, the more will be the awareness and the better will be the acceptance. Just one small step will make a humongous difference. The burden this little gesture will take off the shoulders of a special needs parent is beyond words. These parents are heroes. They put up a brave fight for their kids every day. They have the audacity to rise up and challenge life and the circumstances it presents.

You celebrate heroes. You recognize their victories. You do not hush them up.

April 2 is World Autism Awareness Day. Statistics say 1in 68 children could be on the autism spectrum. An all time high and an alarming number. Science has done little to help the diagnosis and cure so far. As human beings and fellow parent’s let us do our little bit.

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