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Archive for October, 2011

This is for all those who go through their lives not realizing the special contribution of special needs persons.

And this comes despite my daily struggle to work around the many challenges that a sometimes, not always overt disability poses! [There are even folks who think I take him along to work with me because he is my assistant.] But to be fair to Anand, when he is at his best [and sometimes even when he isn’t ] there are always a few moments/times during even bad days when he comes through for me in so many different ways. Of course there are days that none of this will happen, and one learns to let the day pass…

A tribute to my dearly beloved son… Call it another way of counting my blessings…

  • Running odd errands to pay bills, get bread and milk etc
  • Filling up the water bottles
  • Persistently dialling and redialling [and saving me lots of time] numbers that are difficult to connect to
  • Folding up the blankets
  • Setting the dinner table [don’t count the reminders to ensure that glasses, bowls, spoons etc ALL reach the table] 🙂
  • Making sure the front doors are locked at night
  • Making the occasional cup of tea [using electric kettle, tea bags, and milk powder]
  • Warming up food in the microwave [even when I am not at home – a quick call to find out how much time a particular dish will need to get hot is usually adequate support]
  • Standing in line to pay the utilities bills or getting bank pass books filled up
  • Watching a programme on television without interrupting my work with umpteen comments
  • Keeping up a prattle about ‘inconsequential’ things but ensuring that awkward silences are smoothed over
  • Hovering over me with a concerned ‘kay jhala?’ when he notices I’m upset
  • Flashing sunny smiles, giving me spontaneous hugs and going into giggling fits for the tiniest reasons that remind me that progress, achievement and even development are not the only important things in life
  • Oh, and did I mention… entertaining us with his enthusiastic playing of various percussion instruments… 🙂

It balances out the moments of stress and tension when he hits out at himself and anything that’s close by because of his frustration, moments of realization over and over again that he isn’t going to be able to earn his own living, moments of anxiety and panic at what will happen to him when I am ‘permanently gone’ [that’s how he has been able to understand the concept of death], moments of despair about who will love and accept him the way I do, moments filled with a sense of unfairness because he is “no one’s priority”, moments of fear when he is in an unpredictable and volatile mood, moments of sadness when I see him go all anxious, quiet and withdrawn in response to medication, moments of loneliness because each day the energy to take care of him alone is further depleted.

But, he’s holding up his end…. I have to do my bit.

 

 

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It used to mean lights and a full house of guests, of rushing around getting gifts for loved ones, of preparing the sweets and savouries traditionally associated with the festival, of numerous phone calls and gatherings spent in animated, pleasurable chats, of spending times with those cared about… What’s changed?

Over the years its come to mean:

  • Having Anand at home and getting past the festive season with no major incidents requiring emergency solutions
  • Garnering adequate emotional energy to go through the motions of special dishes and decorating the house, and working with him on his project [this year it was ‘book marks’] so that Anand doesn’t miss out in totality
  • Having requests aceeded to that make it just that little bit easier to function
  • Being able to sleep in, read a story book, not explain our lives to anyone, and not worry about running the household
  • Being grateful to have a few extra days to work on pending reports because everyone else is on leave
  • Special moments when a loved one responds to a need without having to be told that I could do with some ‘being taken care of’….

Granted that not all wishes ever come true..and so it is the same this year. We had our lights, even the floating candles, made our book marks, bought our ladoos, had a few visitors, brought home a parcel of Anand’s favourite food. That’s got to count for something!

Thanks ‘Dorabjee restaurant’ for making a special ‘child’ feel really special. And thanks ‘Aputai’ for ensuring that Anand had his ‘bhaubeej’ yet again…

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A couple of days at the Grips ‘festival’ to celebrate 25 years of Grips in India. This time I have only been there as a member of the audience [and have had major guilt pangs on account of not having been able to help].

Since I had to go with Anand [it’s just too much of a nightmare if he’s out alone for any extended time these days], I  used the occasion to remind myself about another unique Grips feature. One that would help in developing media literacy…

Those of you who are familiar with Grips know that there is no ‘raising’ or ‘dropping’ of the curtain. The sets are changed in front of the audience. I think this has several advantages. One of these is that it very naturally informs the young [and old] audience about all the tasks needed to make that performance successful.. It’s not only powerful acting! Those who arrive early can even see lights and cables being put in place, sound system being adjusted, the actors milling around as they get ready for the performance…

Today, for the 2nd day in a row… it looked like the arrangements would have to be shifted at the last minute, from the lovely arena setting planned to one that was a covered space. The unseasonal rains threatened to throw off the performance. Fortunately that didn’t happen today… though it did drizzle enough to make the performance area quite wet. It petered out and a mop up did the job to some level. Yet the actors steps had to be a little more cautious than usual as they performed on the wet surface and through another small drizzle.

But the discussion to ‘move or not move’ took right there in front of the audience…

Yet again… it provided an opportunity to youngsters to become familiar with the many different challenges in putting on a performance, how the changes in props [simple, quick, yet very evocative] could bring about a complete change in the setting and take the audience to a different environment.

For children to be able to see this is important. It not just adds to the participative experience, but to provide  a dose of realism to a group that feeds on the unreal soaps and cartoons for the most part…

How I  wish we could have more of Grips, and similar initiatives ….

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Despair

I wrote this almost exactly 10 years ago… and 5 years had passed relating to the events that were the ‘inspiration’ for the story below. Not much has changed in this decade and a half….. The possibility of self-injury always looms overhead…

29th September, ’01

DESPAIR

The sounds of the kids calling his name drew her to the window. “Harsha, don’t.” they yelled. “Your mother will scream”. She could see them now, hovering around him, but keeping a safe distance as he flung his chappals and his ball over the wall, his face set and stormy. He kicked at his bike and twisted its fender. “Where does he get this strength from?” she wondered. His puny frame did not suggest such might.

What was it this time? She ran through all the possibilities. They hadn’t changed much over the years. He would have told a tall tale and they would have made fun of him. He would not understand what they said, but guess that he was being ridiculed. And he would lash out. Lash out at what was dearest to him. She knew she would have bruises to show for it tomorrow. Her heart was heavy as she raced down the stairs, wanting to gather him to her. Wanting to kiss him and make the hurt go away. It had been so easy when he was a little baby. Every one thought he was so cute, and tiny with that ever ready grin on his face. He was so easy to love then. Nobody expected him to do anything then. It was enough that he WAS.

But that was then. Now he was just a messed up, funny looking man-child, as short as other 12 year olds, but with a half-grown beard. People were uncomfortable around him. Most kids didn’t want to play with him and when they did it was because he brought the bat and the ball or shared his bike or brought them home to play with his LEGO. She hated them then, for using her dear child. Yet she never drove them away, because she was not enough for him. He needed them – they were his playmates.

She’d reached ground level now and was still running. She had to get to him before he did himself any harm. She worried about that. “ Maushi, see what Harsha’s done to his bike”. He’s even thrown away his chappals, and is ripping off the basket”. That basket meant a lot to him. He’d had Geetutai help him get it and had proudly brought home the groceries. Okay so it was just bread and milk, but it was one errand taken care of. He pushed her away as she reached him. The little monsters were still complaining about all his misdeeds. She knew they expected her to let him have it. Well, that was one satisfaction she wasn’t going to give them. Trying to shield herself from the blows that were now directed at her, she pulled him towards herself and headed back to the stairs. He was weeping bitterly now, some of the anger spent.

She wept too.

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Here are some critical things I’ve learned over the years as a single parent of a ‘child’ with special needs compounded by bipolar….  [I just had a rather disastrous reminder about almost all of these at one shot today – Dasara 2011] hence the post….]

1. Don’t make too many plans, or commitments. Your situation will always be unpredictable.

2. Balance between letting the mess be and cleaning it up. A pleasant / aesthetic home reduces stress.

3. Don’t worry about proving you can do everything alone. No one is entirely independent anyway…

4. Enjoy your work, but don’t  get caught up in career ambitions and occupying positions

5. Don’t flog yourself because you couldn’t participate in every meaningful [socially constructive] activity / philosophical discussion] activity going on around you.

6. Accept that you can’t satisfy everyone and try to focus on the priority of the moment.

7. Use a support system whenever it is available and offered.

8. Do a few things to suit your convenience, meeting your needs. People may not pay attention to your specific requests,  so be proactive…

9. Indulge in a hobby whenever you get a chance [reading , listening to music, gardening… whatever… something that lets you be with yourself and at peace]

10. Take a nap, get some rest… when you can, no matter what time of day or night it is. (And ignore pontificating about how inappropriate it is to sleep at ‘teeni sanza’ etc!)

11. Indulge yourself every once in a while… More often than not, you have to provide your own TLC.

12. Dress up special, specially on hard days. [When you get a look at yourself in the mirror, it’ll be easier to smile]. A lovely sari, a pretty flower won’t change your situation, but will make the day lighter.

13. Ignore stares from people on the road [or elsewhere] or look at you disapprovingly as you firmly [though gently] restrain your distraught  ‘child’ from danger, or stepping on people’s toes [literally and figuratively].

14. Recognize that some ‘isolation’ is inevitable. Those who really care will come back [and those who don’t..perhaps weren’t meant to be around forever…]

15. Soak in every moment of pleasure that comes your way… there’s no guarantee of when the next special one will come..

16. Don’t let other people tell you how you should feel…It’s not the end of the world if you need a good cry. It’s okay if you feel the need to be taken care of… but don’t expect it to happen.

I am acutely aware that there are many people in a much worse situation than I am in… not that it makes it easier… but it does make me feel grateful that I can do at least some of the above for myself. I’ve come across many a tip that’s helped me through a bad day in the most unexpected places, so sharing my strategies is my way of reaching out and hoping that I can return the favour… I am still on this journey… and there’s a long way till the end.

Depending on your specific situation, some of this will be possible, some won’t… you’ll probably have other pet coping strategies…. so do what you can to take care of yourself and then….

Get on with it!

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