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Archive for the ‘Special needs’ Category

I wrote this way back on the 9th of June 2017 while Anand was recovering at home from his surgery, but forgot to post it. A good meory to end the year with…

‘Every so often I feel like writing a blog titled ‘Boring is nice”! Specially on days when the kind of events associated with having a special needs person in my life tend to overwhelm me. Undoubtedly, this past month has been extra tough but as is almost always the case, something happens to warm my heart and give me just the push I need to go on.

Because Anand’s got something. And oodles of it – that even most brilliant people lack. And that something is sensitivity and a keen awareness of what is going on around him. Granted that his limitations don’t always allow for accurate interpretations or responses that are helpful but at other times he comes in with flying colours. And it makes me so proud of him. Over and over again, through the years he has demonstrated this sensitivity and appreciation in everyday situations. Spontaneously saying “what a lovely meal!” (Just daal and rice really), to complimenting his ‘Ajji’ on how beautiful she looked in her pale yellow saree with the blue border, to his anxious “what happened” when he realises I am sad, to rushing to get the phone for his ‘Ajoba’…. Just small, everyday actions that oil the wheels of the daily grind.

Last week, I added something to these warm memories.

I was watching Anand lying in painkiller induced slumber on his hospital bed. With his successful operation behind us, my mind turned to an incident of the week before. We had been waiting our turn in a crowded medicine OPD to get Anand’s fitness certificate clearing him for surgery. A seat became vacant and I was relieved to have him sitting down given his pain. I stood leaning against one of the walls from where I could see him. A little later, an old lady in a nine yard saree, quite likely from a nearby village, emerged from one of the consulting rooms. A pronounced limp underlined her distress. As quickly as I registered that, so did Anand. And he was up… offering her his seat. Many able-bodied seated folks in the room – but they did not respond. Anand limped over to where I was standing and leaned against me and the wall for support. Thankfully, a young lady saw him limping over to me and then sheepishly offered him her seat, but that came later.

recuperating

His quick response despite his own condition made me proud. There is much that he can’t do. But it is moments like this that remind me of what he can…. And does….

That’s my boy!

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I have felt the need for inclusion very acutely at both personal and professional levels. As a young mother my heart would bleed when my beloved son was not included in the play of other children. Though the cuteness of toddlerhood and the early childhood years masked many of the oddities even children recognised that there was ‘something different’. As he grew older and entered primary school the differences began to show up prominently. The early remedial intervention could take him only so far and no further. His experiences at our lab preschool at Nirmala Niketan (where I taught in those days) had provided a cushion and ‘Raji teacher’ and ‘Neelam teacher’ had done their bit in enabling him to believe in himself.

But main stream schools were another story. And we retreated, not into a shell, but most certainly away from many social interactions. Given my non-assertive nature I found it hard to ‘fight the world’. So, though I didn’t miss the opportunity to engage in conversation about his disabilities if there was a direct interaction, I began to keep us away from social engagements, extended family celebrations, community festivities et cetera. I limited us to being only with close family and friends. With all the other battles in my life, I didn’t have the energy to fight the battle for inclusion on a daily basis. But I made it a point to take him with me everywhere I was invited as a professional. Funny (not!) how people took me seriously when I spoke at a professional gathering with Anand in tow but not when I tried to make impassioned pleas as a parent.

Yet my belief in the concept continued to grow and it came through in my discussions with many students at Nirmala Niketan, SNDT, and even University of Pune in the decades from the 1980’s to 2010. I accepted assignments with several organizations (e.g. SRTT and Inclusion International) with alacrity because they provided me the opportunity to work with people and organisations and find a way to take the idea of inclusion forward. As a group of parents of children with varied special needs we pursued the idea of a facilitated family living centre but there were no takers. One of the key beliefs of this was to create an inclusive housing community that would also address the need for purposeful, productive activity.

The situation grew bleaker at a personal level , and finally when my son was in his mid twenties I had to acknowledge the need for ongoing professional care. As a single parent, I needed to work to provide for his life long care. (And I enjoyed my work especially with young children!) So there wasn’t as much time or energy to take care of him myself. Work and travel conspired such that, that apart from bringing him home on weekends or special days, I participated only minimally in the activities at his centre. Yet I had always emphasized that parent, family, community involvement is so essential to the real success of such initiatives and centres.

Retirement has finally brought along this benefit as well. I am now able to spend more time at, and for, his centre. As I said earlier, over the decades, and despite my belief in the concept of inclusion, I had retreated (and taken Anand with me) from social interactions. It felt too much of a battle to face the loudly whispered remarks, the unenlightened advice, and even the lack of acknowledgement of his presence in most social situations.

Along with the few friends who also have children with special needs, we had developed a fairly comprehensive facilitated family living concept. The essence of it was inclusion. And we started at home. Hard as it was to have our children accepted and included in mainstream society it was also just as hard to bring together ‘differently abled people with different needs’. And our proposal continued to languish in a folder on our computers.

Years and circumstances intervened as did our own aging process and I took the hard decision to have Anand in special professional care. But now, having retired, I am able to participate as a parent volunteer at many more activities at his centre.

Despite the fact that I typically do not engage in any rituals (religious or otherwise), the enthusiastic involvement in festivals of everyone at his centre (staff AND residents) makes so much sense. Living in a stressful, restricted environment 24 x 7, month after month, year after year takes its toll. Often, it is these celebrations associated with festivals that provide the much needed safety valve and a chance to feel special. Often neglected by society and sometimes even by families, the residents need a way to make their lives seem ‘normal’. And for the staff that lives with them, taking care of them even when not ‘on duty’; it is a chance to express themselves and their many other talents. Specially when there is a festival.

arti time

What makes all of this even more meaningful to me is the inclusion. The inclusion of young and old, of a large range of special needs,  from many different mental illnesses to intellectual disabilities, to degenerative physical conditions, and even a combination of all of these. It is a daunting task.

all together

Yet, is exactly this that was in evidence a couple of months ago when the Ganeshotsav celebrations were in full spate at CMHCC. The pictures say it all.

staff dance           staff dance 2

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It’s a fact. I don’t like it. But there it is… the likelihood of Anand having to live in a centre for many years as I get older and am unable to care for him at home… and certainly when I am ‘permanently gone’ … is a given.

This is something that has bothered me for a long time, and continues to occupy my waking [and sleeping!] thoughts. and I try to make life as pleasant for him as I can while I am around.

But the thought for this blog arose when I overheard my father say to someone one day, not too long ago, in a rather woeful tone …”What do I have to get up for in the mornings?”. This from a man, who, in his mid 80’s has a routine that would put many an office goer to shame. His day starts at 7:15 am or so with being read to for an hour or more by my brother all the way from the USA, followed by his favourite music, breakfast, followed by having an assistant take dictation, read to him for about 3 hours, followed by lunch and favourite TV programs, a short nap and tea, followed by another 2 hours of being read to by our in-house companion and help, followed by yet other favourite TV programs…etc etc. And there are days when there are special visitors, meetings etc, regular telephonic interactions with other folks… etc. etc…You get my drift…. 🙂

But it set me thinking… if he thinks he has nothing to get up for…. what does Anand have to get up for? No specific job to go [other than errands often deliberately created to occupy him], no wife/girlfriend, children to give him a purpose in life, nothing per se to look forward to… And, I must admit there are days when I feel the same way… “What do I have to get up for?” given that I spend most of  my time on guard and attempting unobtrusively to ensure that the basic needs of these 2 men are met.

But to get back to Anand. When I think of the likely number of years he has ahead of him, the question troubles me even more… How is he going to get through those years? And I realize that just as I use some of my fondest memories of my life to get me through some really hard days, I could try to get Anand to do the same.

And this means creating those memories. Organizing activities, ‘events’, trips, special dinners or evening snacks, moments of quiet companionship just watching inane/mundane TV programs or bits of his favourite movies with a bowl of popcorn [or chips and a dip between us], having him help mix the batter for his chocolate cake or other cooking tasks that engage him, coloring together in his drawing book, reading him a story, letting him sleep in my room when he’s upset and scared, taking him out on little outings [despite my fraught nerves because of the way he now hassles the auto rickshaw drivers  every time he gets into one, or the stares we get when he goes into one of his retching fits in the middle of the road or in a store], giving him a head massage, sharing specific links or photos for him on his Facebook page, having his favourite people come by and visit whenever possible.   And so on….

There may be several [or more of you out there] who wonder why at least these things wouldn’t be available to him later on… But that’s the reality of life in an ‘institution’ at this point in time. Something that a group of us are trying to change…but no guarantees that the changes will come in time to be of benefit to our children…

Life is hard enough for Anand….his anxiety, his off and on depression, his limited competencies in many areas, his aggression; conspire to make some days unbearable. The other ‘good’ days have to make up for those….. and all the days ahead….

I hope it will help… at least a little… and he will remember that no matter what the ‘downs’…. he was loved.

PS. Just a few hours after I posted this blog, the situation with Anand took a sudden downturn… and he had to go back to the centre after a continuous 10 months at home…It will be a while before he can come back…but we will try… for tomorrow is another day…

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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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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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