Power of love

There are seven stages of grief, the first being denial and the last being acceptance. How quickly one moves from the first to the last stage determines the person's will to fight and survive. Most get stuck at 'denial' - sad but true.

As part of a series on women with grit, I dedicate this piece to a lady who has not only come to terms with her personal challenge, but has gone a step beyond. She has opened a school for children with learning disabilities. With every step that she takes in this direction there are many like me who gain courage and inspiration. When most of us get dumbfounded by our personal demons, this lady goes ahead and brings hope to the life of others, similarly affected like her only son.

“If there is one thing I learned about friendship after my son was diagnosed as a special kid, it is that it can be very fragile. Being a friend during good times is easy. Yet it is during the difficult times that we learn who our real friends are. I am forever grateful to those friends and family members who supported our family after the diagnosis. They made a choice to accept my son for who he is and help us in any way they could. Making the choice to support a family affected by their child having a learning disorder is one of the greatest gifts you can give. It is also very likely that your act of kindness may turn out to be one of the greatest gifts you receive back as well,” says a mother of a 12 year old autistic child.

In your lifetime, you will probably know more people and families affected by some or the other disability. You can choose to be part of the solution by helping support a friend, family member or neighbour. Take the time to learn not just about the disability, but the individual child. Make the decision to accept children with disabilities and teach your children how they can help by being a friend too.

When a child is first diagnosed as not socially ‘normal’, parents often scramble to find appropriate services, doctors, schools and therapists. What we don't always anticipate is that relationships with friends, family and neighbours often change. Some will stand by our side, doing what they can to help and embrace our child no matter the diagnosis. However, some people will either sit quietly on the sidelines or abandon the relationship altogether.

So what happens when you find out that your friend, family member or neighbour has a child who has been diagnosed with a learning disability? How can you help your friend? How can you help their child?  There are many ways you can assist, from talking to offering a play date.

Be there; spare a few hours every week to reach out to families who are facing this challenge. It sounds easy enough, but parents of such children need someone to listen and ask how they are doing. As a friend, you may not understand all the jargon, but you can lend an ear and also learn in the process. Offering to come over for a cup of coffee or to get together just to talk can be one of the best ways to help your friend get out of his/her bubble and combat the isolation. If not a friend, you can also contribute your time to non-profit schools and organisations that are catering to these children. The schools need more than trained staff, they need people to paint their benches and mow the lawn. These schools are doing a great job and you can be a part of it by just being open to the idea.

Bring forth a smile, have a play date. Play dates with special children might not be like a typical play date. Even if the play date is a little out of the ordinary, it will offer the kids an opportunity to learn typical social behaviours/skills from other children. For the typical kids, the play date may provide a lesson in acceptance and tolerance of people who are different from them. Acceptance is a lesson that is learned best by doing, so your children will benefit as well. It can be of great experience for both families. As neighbours to affected families go a little beyond sharing a cup of sugar. Invite them over with their child and be open and accepting of the family and the related issues.

Offer respite, it is the best help you can give. Whether the child is a toddler, adolescent or adult, respite is often a complicated issue for parents. Many parents who have children with disabilities are overwhelmed with the day to day responsibilities. Some children on the spectrum do not sleep well during the night and that further adds to the exhaustion. However, when you have a child with special needs; it can be difficult to find someone you trust to watch your child. An offer to provide brief respite from a trusted friend or family member who knows how to appropriately interact with the child with special needs is a great gift. Whether it be one hour or a night, any offer would be a gift for a friend in need. It seems like a simple favour, but it can mean everything to an overwhelmed parent to have a few hours to go grocery shopping or to just spend some alone time with their spouse.

The gift of money is as important as the gift of time. Not all afflicted families can afford the best schools and the best teaching techniques. Does that mean that they have to forgo the latest tools available to help their child? No, they won’t have to, if you step in. As a non-profit organisation, many of the schools for children with special needs rely on the support of community volunteer to help accomplish their goals. If you get in touch with the schools near your community, you will be aware of the ways you can help fund a child or a tool, or even help in raising funds for the school. Donations need not always mean truckloads of money, your change that adds to the weight of your wallet can also go a long way in bringing simple joys to the children whose parents are finding it tough.  There are various opportunities to offer your aid, you just need to be aware and willing.

Joy is a simple thing. The quantity you spread is almost always proportional to the quantity you feel. Light up a smile today, extend your hand, embrace joy.

Mom's the word

At the age of 35, how many of you would like to start school all over again from kindergarten? Not many, I presume. There is so much to do at that age. There is a husband and a house to take care of, parties, night-outs, romantic holidays, shopping and of course the self-defining career. To start school again is not something that would feature on the list of priorities of a modern 35 year old woman.

But I know a lady who did this. As a mother of a five year old son, diagnosed with autism, she decided to join school again. No school was willing to admit the boy. "There are schools for children with special needs, please take him there," they said. The special schools were quite a dampener. They did nothing more than babysit the child. This was unacceptable to the mother, who was neither in denial of her situation, nor willing to give up on her son. One reputed school following the international curriculum accepted the kid on the condition that the mother was willing to take all the classes with him. And so she did. giving up on her career, her personal joys, her 'me-time' she started school again with her son.

Autism is viewed as a tragedy. As a disorder that robs children of their lives and parents of their children. It took a lot of courage and tenacity for her to grapple with her son's development, autistic diagnosis and finding the right help.School in the morning, followed by some recreational activity and then therapy in the evening. Life revolved around this routine. She must have missed movies, she must have had to forgo reading the latest bestseller, she would not have had time for beauty sessions and dress trials. The things that we take for granted had stopped for her. But she had the joy of being useful to her son, of being able to help create a future for him. To start him off on a path that would eventually make him self-reliant in her absence. I think she saw that as a better trade-off.

"A happy and expressive child, becomes visibly confused and uncomfortable, while therapists curiously look on and continue prodding him," she wrote in her diary, during the early years of therapy. I can only imagine the frustration and stress of wanting to help her child while protecting him and letting him be a kid. She continuously felt torn between listening to her maternal instincts of wanting a happy, relaxed childhood for her son and listening to the professionals who advocate for stringent treatments. She must have felt  helpless not knowing what her son needs and wants; never truly knowing what he is thinking. While he made great progress some days, other days, it would have felt like taking several steps back. The school was always encouraging, she said, the therapists rarely so.

When the focus of a woman shifts from the husband to the child, it takes effort from the husband to keep the marriage alive. In this case, the focus was centred on the little boy, everything else seemed hazy. The relationship between the couple suffered and grew distant. A lot of things had to be forgone, like moving to a new city for a better job, social interactions were not easy, couple-time was less as the mind was occupied and the body, tired. The result was a woman who did not want to see this gap and a man who delved deeper into his work. As parents, however, they continued to be the band on which the little boy could always hop and play.

She was jealous of the little worries that the other mothers at school had.  She, at times, resented other mothers who eased through decisions for their children and worried over whether the birthday gifts would be liked by the child, or whether it’s time to move out of the crib and into a big-boy bed. She did not have the luxury of such indulgences. When she was done with the day's study with her son, she worried about supplements and approaches to try and encourage him to eat food. She lay in bed and wondered how her son would ever be okay in the world, how she could help him love who he is and have his needs met. She could never be easy. She could never be still. Always, she was running, moving, searching, finding. Always, she was fighting against the unbearable default of failing her son.

Years passed, some were filled with angst, but mostly they were years of learning and being happy in small joys. Last year she graduated with her son from school. As they shared the stage with their degrees, a woman of 53 and a boy of 23, the entire crowd erupted in applause, and why not! This was a journey that tells the story of an exuberant boy, who loves art, reads music, sings “Bohemian Rhapsody” in its entirety, makes videos on his computer, hugs and cuddles his parents, and is much more than his diagnosis; and it is also the story of a mother who believed that she could help her son.

As we celebrate Durga Puja in all its fervour and gaiety, and especially today, Maha Shashti, which is a day that is dedicated to the well being of the children, I dedicate this post to the mothers of children with special needs. The power, the energy, the fighting spirit is not always found in myths and legends. They are, in fact, a depiction of mothers like these who never say never and strive continuously to make life better for their children. "There is no tragedy if you don't choose to see one..", she says, and I believe.

Faith holds

There was a rickety, wooden chair in my house. As a child I sat on it while my mother plaited my hair each day before school. It was a ritual. Unruly tangles giving in to the firm strokes. There was a wince now and then followed by a tap on the head with the back of the comb. The result was two neat plaits, ready just in time for school. I did not have a mental alarm those days, maybe my mother did. What I had was faith that I would be ready in time for the bus. I sat without a worry in my head on that chair each morning.

Many summers passed and I got married. Not to a boy I had known since high school, or a guy I met at a pub, Nor a colleague, neither a client. I married a stranger. No courtship apart from a few formally arranged dinners with older chaperones. Suitable age, suitable boy, a good education and a steady job were benchmarks on which I put my faith. To face the seasons together, come what may, was the faith and it is running it's course.

Kids came and so did worries and mental alarms. Faith might have faltered in the small battles, but we keep moving forward each day because we trust, because we have faith.

It is festival time again. The time to celebrate our faith with family and friends.  To spread cheer through new clothes, new shoes, chants and hymns, frankincense and sweets, good food and fresh garlands. To hold a promise, to keep faith that this year too shall bring us joy and hold us together like all the years that have gone by.

The idol, though beautiful, is but an excuse, a face, to all that is good in the human spirit. More than the idol, I put my faith in the potter's loving hand. Faith that generations will continue to create this beautiful symbol of goodness on earth.

If God creates man, some men do return the favour with love

Something fishy

Soumya and Max

For the past few days my son comes home with his uniform soiled. He stays silent on asking. Even when his sister jeers, "Did you piss your pants?", he stays quiet. Very unlike him, to stay quiet, that is. I crib about having to wash his uniform on a daily basis. He says, "Mom, give it to me, I will wash when I take my shower." Not that he never offers to help around the house, but this is a bit over the top, even for him.

My children commute to school in the school bus. The bus does not pick them up from the school gate though. The kids have to walk a distance and wait for the bus. It is not an uncommon practice, the roads here are fairly empty and the children are not tiny anymore, however, this is the first thing that creeps up my mind whenever I worry about them being late from school or for that matter, soiled uniforms.

"What does he do  after school? Does he not wait for the bus with you?", I asked my daughter. "No, he has his own group of friends and they are on their own.", she answers with a shrug. I tell her to keep an eye on him, she shrugs again. I go to his room and see that he is cleaning an old Horlicks jar. I ask,"What happens to your pants everyday? Do you play rough, there is so much mud on it, where does it come from?" He makes the face that is known to melt my heart, the face that my daughter hates and my husband perceives as 'trying to get his way around with mamma look'. He puts aside the jar, takes my hand and makes me sit on his bed.

"There is a wadi (wadi is the Arabic for a dry river bed that fills up during flash floods. This term is also commonly used for murky water ponds in low lying areas) near the place where we wait for the bus. One day when I and my friends were playing cricket there, the ball fell in it and while we were taking the ball out I noticed that it is full of fishes. Mamma the wadi has so many fish in it." His eyes dance with glee as he narrates this tale. I can imagine the dull, grey fishes that he would have seen there, but to a person without any knowledge of murky pond habitation, he could well be spinning a tale of rainbow hued fishes with golden spurs. "Have you been getting into that wadi to look at fish?", I asked. "Even better mom, I go everyday to that wadi to catch a fish. I am this close to catching one.", pointing at the jar drying on his window seat he adds, "I am going to prepare a home for the fish I catch, I have also decided on a name, I will call him Lucky."

There was no point in talking about the pitfalls of a wadi to him, that day. No point also in talking about the germs and the diseases he could catch from that place. He was in love with a fish in a pond and you cannot show logic to love. As a mother I could not stop myself from saying,"Watch your step and make sure you are not alone." He nods and I go out of his room, and his world of fishes and ponds.

The following day he is successful and as I open the door to the kids from school, I see him in his dirty uniform, holding a poly-bag filled with water in his hand. He raises it jubilantly on seeing me. Toshali just says "Eeeeow stay away from me," and runs inside. He chases her up the steps and both of them in turn are chased by Max. Lucky is the sole survivor of the three that he caught. Talks of setting him free are not taken well and the response usually is,"He likes me mom, that's why he swam to me, cant you see he is lucky and so am I. We found each other." I smile, Toshali says,"Ohh pleeease...." and S! He went out to the pet-shop and bought fish-food. The plan is to model a tiny fish tank and add a few more friends.

The three tiny fish that were caught and brought home a few days back

 

Balls and more...

The summer holidays are at their fag end. I am looking forward to the schools starting. It has been a long two months of sweltering heat, a rowdy boy, a passive-aggressive girl and almost no 'me-time'. 

I am sharing a scene that needed to be captured. Yesterday morning after breakfast, when the kids were being assigned their chores for the day and Max was waiting eagerly for his set of instructions, there broke out a fight between my kids. They do not need an excuse. A look from my son, can cause a wave of emotions in my daughter, all negative, mind you. The look is then retaliated by words, which are seen as blows and felt by my son with almost Tsunami like strength. There is now a motivation and a license to hit, he feels, and before I can say "S-T-O-P" a full blown battle is on. These battles have found a great cheerleader in Max now. Nothing out of the ordinary, what I so far described. But then it happened.. amidst the blows, Bond (now nine, to be ten this October) tells Toshali, "I will kick you where it hurts real bad!" ...

T: "And where do you think that is? Huh? Where?"
Bond: "Your balls, of course!"
T looks at him, looks at me and says: "You should talk to him, he doesn't know anything, he is so dumb, I just don't believe it!"
Me: "Mind your language when you talk to your sister. Also for your knowledge, girls don't have "balls" though that is not the correct word and should not be used."
Bond (incredulously): "What are you saying? Everybody has balls. Me, you, Baba, Didi, even Max. The most important part of the body is the balls, it is more important than the brain or the heart. Everybody has it."
T: "I am out of this place, and Ma dont laugh, it is not at all funny."

I don't know what came over me, but I could not stop myself from laughing, I knew that I had to explain to Bond the facts of life, and also tell him that saying the B-word out like that is not allowed. But for the moment all I could do was roll on the floor holding my tummy. Toshali was livid and Bond thought I was in some kind of pain, because he could not comprehend that what he had said in such earnest was remotely funny.

I gathered my wits and made him sit next to me.

Me (Starting again): "Girls dont have testicles, that is the word to be used, if you want to refer to balls."
Bond: "Of course they do, everybody has them, Max just has one, I even know what the Vet said. She said she will operate and bring out the other one."
Me: "Max is a male, so his organs are like yours. T is a female and her body parts are different."
Bond: " She has it Ma, just doesn't know where it is. She is dumb."
Me: "I am not dumb, if I had them, I would know exactly where they were in my body, but, just like I said before, females don't have them. We have something similar called ovaries and they are inside our bodies."
Bond: " You are just giving fancy names that I cannot pronounce. It is all the same. Didi's are inside? Ma, you know what, that is why she is so stupid, her balls are inside." Take her to a doctor, they need to bring it out."

I knew by then that Bond understood that he was wrong about the human anatomy, but he was enjoying irritating his sister and so continued. It might seem stretched out here, but all of this happened within a framework of 15 minutes or so. The fight continued and then lost steam and topics were changed and the day flowed on.

Maybe I should have taped this, to be used on a later date when either of them is being gutless about life issues. By then they would also know that 'Balls' has a literary meaning too. And in the literary sense women have as many balls as the men and yes, they are not covered up either.

T and Bond as in 2006

What is the purpose?

S is going to China for a week. It is the start of the Eid holidays here in Muscat. Everything will remain closed for the week. This is a personal trip. He is going alone. These are facts simply stated. Another detail, S is my husband.

It is independence day today. The country celebrates its 66th year of independence. We are no longer ruled by others, we are free to make our own choices and be responsible for the consequences that arise from them. But even today, within the society to which you and I belong, the minds are enslaved to years of cognitive behaviour. A fact, as the above, still does not gel with society. "Official trip?" people ask. "No, personal," says S. "With a group? College friends?", they continue. "No, alone," replies he. A crooked smile follows, looks get directed towards me, waiting for an opinion, even an explanation perhaps. I give none. "Let me know if you want massage parlour numbers." say some with a suggestive laugh. S smiles. I do too. Women ask me how I allowed this. "How could you? He should have chosen some other place if you were not interested in China? The kids have their holidays as well. What do you think is the purpose of this trip?" I have nothing to satisfy their query and anything I say will only further contaminate the narrow alleyways of their mind or so I feel. I choose to remain quiet.

His parents, who are staying with us for the time, ask me everyday if I am staying back because of them. I say no. They quiz me individually on the places that he is going to visit, if he has friends there, what is the current weather condition in China. Normal questions any parent would have and I reply to these as best as I can. Then comes a stinging shot out of the blue from my mother-in-law. "You sleep very early, I have noticed. Much before my son goes to bed. Hope you are not pushing him away. Maybe he does not get what he needs from you and so...," My reactions would have made a series of 'never-before-seen' emoticons had they been captured on lens, but unfortunately there was just the two of us in the kitchen then. How much can a mother care about her son, the extent in this case was unbelievable. I could not let this one pass, this was not an acquaintance asking me questions to feed the society gossip. This was my mother-in-law telling me in so many words that her son was going on a solo trip to China because I did not give him as much sex, as she presumed, he would like. No way could I let this one pass. "Let us be direct here, are you saying S is going to China for sex? And if, for the sake of discussion, I assume that you are correct, then what would you want me to do?" She retreats and mellows. Says in a pacifying tone, "I don't know what is the purpose of this trip?" "Ask him," I say to which she says she is more comfortable talking to me than to him and a whole lot of other crap which basically does not mean anything.

I conveyed this conversation to S. I was upset by the lack of privacy I have in my own house. I felt violated. He said, "Why doesn't she talk to me directly?" But this and many other such questions had sown the seeds of guilt. So far S had been factual about the trip. Conversations had been on a need-to-know basis. But suddenly he was making plans to take me to Jordan for the next Eid, which falls during October this year. He was mailing me ticket receipts and hotel bookings. He was planting seeds of suspicion in my head and I hated the feeling. The trip that he had looked forward to was slowly getting soiled. The idea of such a trip, the romance of it, the freedom that it embodied was getting murky in my head. I fought against it, tried not to change my perspective. It was still a trip to China that he was taking alone. It had a purpose for him, which validated the cost and that was a good enough reason for me. I fought to keep it simple. I fought with myself to accept his need to be away from us on a holiday.

And today as I wished my friends on the occasion of our Independence Day, I realised the irony. How are we free, if even today we get pressured by negativity? Why should we celebrate the country's freedom when we are not free from stereotypes? I will drop S off to the airport tonight. I hope he enjoys himself to the core. I will also hope that people realise that everything need not have a purpose that fits. The actual and most important purpose is to be free to make a choice and live with it. Let us be free!

S and I as taken in December 2011

Growing up is never easy....

"All my friends think you look very young and cute, not your age at all!" said Toshali, in her now famous grumpy look. It was a regular post-school-hour afternoon and I was folding clothes. I turned and smiled. She shrugged and said, "You don't, I dunno why they say that? You have wrinkles around your eyes and laugh lines and quite a few of your hair has turned grey." My grin turned from happy to amused as I turned back to folding clothes.

You all must have gathered that I am speaking of my daughter who is a teenager now and conscious of every detail that she was just a few months back oblivious to. Topping her chart of annoyance is 'Moi'. It used to be her brother but now I reign supreme. "You behave like a teen Maa and that is why you are so popular!!" She was not done yet, I realised. Usually I just let her speak till she has said it all and then I say my part, if there is scope to say anything in my defense. Today I was stumped.

I sat down on the bed and looked at her. "What is it that has put you off?" I asked. "I don't like the fact that people think we are sisters. You must look your age Maa. The other mums all look their age." I seriously did not like the way this conversation was going. I explained to her that most of the 'other mums' that she was referring to had older children and hence were years older than me. She refused to listen. Turning her head away resentfully she said, "When we walk into a room together people want to talk to you, not me." My fuse started to tick. A dull throbbing ache starts at the back of my head and spreads willfully towards a full blown out migraine. There is a sense of helplessness. I know what she is feeling, I can empathise on one level. Yet I feel ill-equipped to cope with her.

The words that want to spring out of my mouth are reactive. They hang on the tip of my tongue begging to be let loose. She wants a fight, I will give her one, my reflex churns choppy signals to my brain. It takes immense will to keep a reign on my words. The migraine will go away, but the words once uttered will not return unscathed. I suddenly wish there were more clothes to fold. But the pile is done. All sorted, nothing left for me to do apart from facing her, talking to her and dealing with my fuse.

I tell her then of my adolescence, "I grew up in the presence of a woman whose beauty is admired even today. I grew up hearing people say, 'You have nothing of your mum's looks.' It must have hurt then. I was your age, my face was full of acne, I was not slim, neither fair compared to the friends I had. I had to smile. I have never confronted my mother about this. I don't remember holding a grudge against her, maybe I did sub consciously, but those times were different and parents were 'parents', not 'friends' with whom you could pick a fight." Toshali gets restless and I know it is time to change my track as it must sound 'preachy' to her. So I change gears and start again, "To begin with I am happy that you are honest and vocal about your feelings. I think that is praiseworthy." She looks stumped now. But she says that I am digressing from the subject and I allow myself a hint of a smile that promises ultimately to alleviate my migraine. So I let the smile linger.

I tell her that what she perceives as young is actually agelessness. It is a period in a woman's life when she is sure of herself, knows her strengths and accepts her weaknesses. When she has travelled equally, inwards than outwards. Her experiences glints from her eyes and smile through her lips. "What you call beauty is actually maturity, a face that is calm in its understanding of the world and poised in its knowledge.", I tell her also, "The only way to reach this ageless quality is to live life. Enrich yourself with as many experiences as possible. Even this talk that we are having today will reflect from your face tomorrow and give it a desirable quality." A part of me tells me she is too young to understand all this, and the other part says,"Try her." I speak as she continues to listen.

"I have to wait it out, you mean?", she finally asks. My smile widens. She did get the jist of it. "You can say wait it out, I would say live it, feel the joy, the pain, the love and the bitterness and one day when you are on your own, your face will be transformed. What is a face, but a mirror of your experiences!! What is it that holds a gaze and makes people want to talk to you... it is nothing but your willingness to talk back. I do look my age, it is age alone that transforms a precocious girl to an ageless woman." She smiles, plucks a grey hair from my temple and laughs. "You are old.", she says and winks as she leaves the room. Well well... what can I say? I let her have the last laugh.

My migraine didn't bother me. That was good enough for the day.