On special needs for DECCAN CHRONICLE

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Monday, 16 May 2011 07:00

SERIES OF SHORT PIECES ABOUT PARENTING A SPECIAL NEEDS CHILD, WRITTEN FOR THE DECCAN CHRONICLE (2010) 1. AT FIRST ...  Finding out that one’s child has a mental disability must be the stuff of most people’s worst nightmares. For some it comes as a slow growing awareness, a frightened quickening of the pulses when misgivings creep in with ever increasing frequency. For others, it will be an abrupt and shocking revelation that overturns the euphoria of new parenthood into a suddenly terrifying prospect.   Who doesn’t start dreaming during pregnancy about the perfect child waiting to be born? The birthday parties and sports days, the strapping son coming home from college, the secrets that only mothers and daughters can share …   It is all that and more which is lost when a doctor first tells a set of new parents that such things will probably never be theirs to have. I know medical professionals exist who, painfully aware of the magnitude of this moment, deal with it sensitively, providing comfort and information and, crucially, knowledge that unexpected joys will materialize along the way. But there are, unfortunately, those who either don’t know how to deal with such grave responsibility, or don’t care.   I should know. When I was told that my daughter was mentally handicapped, and would probably never be able to speak, she was a plump eight-month bundle of joy, seemingly not that different to any other baby her age, all eager smiles and coos. Of course I had noticed that her milestones were delayed, and that she drooled something terrible. But friends and relatives, eager to soothe, offered various examples of this or that person who had been exactly the same as a baby and yet had gone on to achieve great things. Hope and wishful thinking are powerful comforting factors that cut right through all doubt.   However, the paediatrician my mother-in-law took me to robbed me of these important coping mechanisms in less than ten minutes of meeting her. ‘This child is mentally handicapped,’ she declared, having examined my daughter, sans eye-contact, or any other kind of contact for that matter. Even a maternal pat on the shoulder may have gone some way to help lessen the blow.  True, the doctor’s diagnosis was spot-on and she had spotted the key features that had (unwittingly or otherwise) escaped everyone else. Nevertheless, given that a young woman’s destiny was being dramatically re-directed with her words, it was beholden on that medical professional to deal with her albeit unpleasant task using a tiny bit of kindness and compassion. 2. COMING TO TERMS Last week in this column, I described the shock that parents feel when they first find out their child has special needs. However, on a more optimistic note, I must reassure people of the light which lies – invariably, indubitably – at the end of the tunnel. It is almost imperceptible at first and can take surprising forms. In those early years, it often emerged via some minor goal: my baby flipping over onto her stomach with a startled expression on her face, for instance, a seemingly small manouevre but one that would instantly cause the world to turn right-side-up again, accompanied by overwhelming relief that ‘normalcy’ lay just around the corner. More powerful surges of hope came on meeting medical professionals who offered a new diagnosis, especially one, like hypothyroidism, that was treatable. In those early months, we ran the whole gamut – as I now know many parents do – of going from pillar to post in search of a diagnosis, a syndrome, a label. Not that such things are entirely without their uses. For one, they help you come in contact with others who share your particular tag and often such synergies result in energizing and necessary support networks. Most of the special needs organizations I know of in India have, in fact, grown from groups of parents getting together and deciding to help themselves and their own children with the use of their own resources. In the end, however, that’s about all a label achieves. It does not in itself offer any magic solutions and, soon enough, I found myself giving up the search for one. I realized that, whatever my daughter’s chromosomal aberration, she was going to be in life-time need of care and assistance and the important thing was to get on with that crucial job without expending further time and energy on essentially futile matters. I hasten to say that that kind of pragmatism does not come overnight. There are many phases that a parent must go through first – grief, denial and anger being some – before that longed-for pin-prick of light will emerge through the dark. But it will not fail to come, in small ways and big. The trick is to learn to seize those joys that are particular to the world of special needs. They will almost never take the form of PhDs or high-flying jobs. But they will invariably come accompanied by dollops of love and laughter. 3. JOINING SCHOOL Everyone worries about finding the best school for their child but parents of children with special needs have to make a more basic choice first. And that is whether or not to send their child to a special school or make what may seem like a foolhardy attempt at sending them to the school one would have unthinkingly chosen had they not been born with a disability. When my daughter was small, ‘integration’ was the buzz word, the fashionable trend among special educators. Nevertheless, I baulked at both choices. My first glimpse into a special school in Kerala had revealed a chaotic place in which hulking teenagers with sat alongside tiny ones, everyone stuffed higgledy-piggledy into one large room because that was all they had. But regular school – with its rows of desks and smart uniforms – was a scary place too. How would my daughter fare amidst all those clever kids who could speak and make friends and would, doubtless, gang up on my speechless child? And what of the teachers! Would they have the necessary skills to deal with special needs? Surely they would resent the extra demand being placed on their time. The temptation to keep my child safe in the more protected environment was immense. But I owed it to her to swallow my fears for school was, I told myself, a kind of microcosm of the world itself. And so I did, re-living my fears anew every time I saw her into the classroom and walked away. In the end, the experiment failed. The school was not equipped to deal with special needs and my daughter’s first class teacher turned out to be lacking in imagination and empathy. I was asked to withdraw my child and, though overwhelmed with sorrow, it was with a sense of some relief that I later took her to the only halfway decent special school that was on offer. I have since met parents with more fight in them than I had at that stage. Who stood up to unsympathetic educational environments and pointed out that it was they who were at fault, not their child. How true that people with special needs are handicapped more by the world’s unwillingness to accommodate them than their own shortcomings.    4. TEENAGE TRAUMA Every stage comes with its own unique challenges when you are bringing up a child with special needs. But it’s the teenage years – not an easy ride for most parents – that causes particularly daunting anxieties. For girls, of course, it’s the start of the menstrual cycle and its attendant problems that are the most difficult aspects of adolescence to deal with. The problems lie not merely in coping with the physical discomfort and the ever more desperate need to learn crucial self-help skills. For a parent, puberty also comes as a heartbreaking reminder of the human body’s stubborn refusal to consider mental age or ability. Not that boys have it very much easier. It’s a bewildering time for anyone when skins erupt and voices break and sexual awakenings are far from the stuff of poetry. Throw into that mix a teenager with a physical or learning disability and associated behavioural problems and what you get is an explosive mix that can drive everyone involved to the very end of their tether. I know two families who came near breaking point when their children with special needs were going through puberty and only one of them eventually managed to rise above the challenges to stay together.    Problems – as is always the case in the world of special needs – also stem from external factors. While small children with learning difficulties can appear ‘cute’, teenagers are not that at all. And so it is that, at this stage, friends and relatives who were previously happy to help with baby-sitting duties often withdraw their support. Who can blame them? A child can be made to blend into someone else’s family unit in a manner that a gangly teenager never can. Additionally, how could one possibly ask a friend for assistance with personal hygiene when it is not a child one is talking about but a young person with body hair and budding breasts. Friends and family should not give up. By offering a few hours’ respite care to harried parents, they could be helping save a whole family from falling apart. Besides, the very offer of help can help assure the young person in question to understand that their bodily changes are only a passing phase and do not make them any less lovable.   5. RESPITE CARE Every so often newspapers report ghastly stories about special needs children who were kept chained or locked up by their parents while the latter were out at jobs or on pleasure trips. Of course, such stories are heartrending but the manner of reporting them is usually salacious and judgemental, rarely examining the experiences of that vast majority of well-meaning parents who struggle, for various different reasons, to either take their special needs children out with them or arrange for suitable child care if they are to be left at home.   The world is still not as receptive to people with special needs as one would hope or imagine. Even in England, there was a recent case of diners in a restaurant threatening to walk out when a group of people with special needs were escorted to a table next to theirs. Luckily, the restaurant manager was courageous enough to uphold the right of his special needs customers to enjoy their meal out, rightly overriding the prejudice of his other customers.     Child care presents another whole set of issues. Unless one is lucky enough to live in the same town as close supportive friends or family members, parents are at the mercy of domestic staff who are often unwilling to take on anything out of the ordinary. I've heard the occasional story of an angel-like ayah who dedicated her life to caring for a disabled charge but, more often than not, the experience of parents of children with special needs is to face opportunistic demands for higher pay or even downright refusal to carry out certain crucial tasks around hygiene or personal care.   Many of the parents I know find it easiest to merely give up their own social lives to ensure that their children are not left to the mercies of uncaring 'carers'. A sad decision, given how important it is to gain respite from often quite taxing parenting. And what of those parents who need two incomes to keep home fires burning?   Most western countries offer respite care schemes for parents of children with special needs, aware of how even a couple of hours away can help recharge the emotional and physical batteries required to carry out such an important task.   6. WHEN PARENTS ARE GONE Francis Bacon said ‘When a man hath wife and children he has given hostages to fortune’. How much bigger that dependence on luck and chance when children have special needs of some sort. It certainly comes up time and again in my conversations with parents of children with learning disabilities: ‘After us, what?’ What, indeed, in a society where long-term residential care remains a relatively unknown thing. In our recent move back to India, we considered giving up my daughter’s placement in a group home in England, a jolly place that she shared with six other young disabled people and their carers. Not that there are no such schemes in India. I know of a couple, and remember with special fondness a visit to a Camphill on the outskirts of Bangalore where we were given a warm welcome and pressed into staying overnight. But this is a drop in the ocean. I have spoken to many parents in Delhi, where I now live, to harness that most potent of powers – the desperate need of parents – so that we can get a similar scheme going in this city. Astronomical real estate prices and traffic clogged roads go against us but, otherwise, it’s a beautifully simple plan. All we need to do is jointly buy/rent a house, staff it with trained personnel, buy a bus to transport our children to their respective day services and take turns to be responsible for the smooth running of the place. One parent of young man with autism even suggested that all parents of children with special needs should be persuaded to will their properties for exactly such a purpose after their own lifetimes. There will still remain the bigger question of ‘After us, what?’ In particular, the likelihood of exploitation of our vulnerable children by unscrupulous and greedy relatives. We used a top London law firm to help us set up a trust fund using non-interested parties as trustees. This, and a belief in the essential goodness of human nature, are the only way forward. 7. THE JOYS Much is said about the difficulties of having children with special needs which makes it easy to overlook the fact that there are many joys to be had in this very special kind of parenting as well. Nevertheless, even well-meaning friends with ‘normal’ children sometimes look disbelieving if I say such a thing, and I understand that it must sound as if I’m desperate to seek a positive angle. However, the truth is that I sometimes listen to other parents’ complaints about their children with some relief that I have been spared the angst of ‘normal’ parenting: the stress of exams, the back-chat, the ‘attitude’ from teenagers, boyfriend/girlfriend trouble ... ‘six of one, half dozen of another,’ I tell myself. All parents learn soon enough the bittersweet joys of loving and giving in equal measure. We love our children endlessly and they certainly exhaust us of all our reserves sometimes: physically, emotionally, financially, you name it! Of course most of us do it willingly, without expectations of flowery tributes or gratitude. But, when faced with an ungrateful child, which of us can claim not to feel hurt? Only Shakespeare could put it so powerfully: ‘How sharper than a serpent’s tooth it is to have a thankless child’. A friend’s 16-year-old has recently been giving her grief, throwing down all those horribly familiar lines such as, ‘Why did you give birth to me?’ and, more simply, ‘I hate you!’ In tears, my friend remembered the angelic child her obstreperous teenager had once been as I attempted consoling her. I did not say it to her, of course, but therein lies one of the joys of parenting a child with special needs. Endless love is, generally speaking, returned with endless love. My daughter may not have the language to tell me what she’s thinking but, by the same measure, she will never hurt me with deliberately cruel words. She will not grow out of her childish preoccupations but I know she will always love me with the innocent adoration of a child.   8. LETTING GO This is is an important lesson that all parents must learn. From the time a toddler releases the parental hand to take his first stumbling steps across a room, parents put themselves through this anxious task many times over. First day in school, first pyjama party, first night away from home, first love, leaving for college, job, marriage … all these comprise the kind of letting go that comes easier to some parents than others. Some of these experiences apply to parents of special needs children too. But they have to grapple with issues specific to the world of disability too. As language is my daughter’s particular area of difficulty, the biggest struggle for me came in trusting her ability to make herself understood to people other than me. Additionally, I was also perhaps always more astonished and touched by the willingness of others to take on this challenge than I needed to be. One early occasion came when she was about three and was being left with a kindly aunt while I went to attend a formal no-kids event. ‘But she doesn’t have a word for toilet, Amayi,’ I said, filled with anxiety for the kind of mess that could ensue, given that my daughter had long outgrown diapers. I had learnt to read her facial expressions and body language to pick up on such needs but these would be difficult to explain to my aunt and the last thing I wanted was to repay her generosity with a messy toileting episode. But Amayi dismissed my concerns with a firm, ‘We will manage, you just go enjoy yourself.’ Well, ‘enjoy’ isn’t exactly what I would have done that first time but my aunt and my daughter certainly managed without the earth caving in. I have subsequently had to rely many times over on the kindness of others. There’s no shame in this, and letting go thus is as important in developing the child’s confidence as it is for the parent. 9. UNLIKELY LESSONS Learning from people who themselves have learning disabilities is not a likelihood many of us would take seriously. But there is much to be discovered, I have found. Qualities such as patience, tolerance and good humour in the face of sometimes immense adversity. There have been occasions when, unable to understand what my daughter is attempting to tell me, I see a look come over her face that indicates how stupid she thinks I am. Indeed, there must be days when she is convinced she is surrounded by people with learning disabilities! And yet she does not rant and rail as most of us would if we found ourselves immersed in a world full of individuals unable or unwilling to hear or understand. Pushed to a wall, my daughter will simply give up, take a deep breath and try a different tack. Our world is, by and large, not geared to deal with disability but this does not prevent the disabled from soldiering on regardless. There are large swathes of the world that are out-of-bounds for wheelchair users or the physically challenged but how often do you hear them complain or ask the world to change? From a restaurant across the road in London, I once watched a young man in a wheelchair wait patiently outside a pub that did not have a ramp and, soon enough, someone came along who helped lift the wheels of his chair over the door step. The man looked neither frustrated nor upset, nor even hugely grateful to his saviour. This was obviously a normal event in an ordinary day and he knew that someone would soon happen along whose thoughtfulness would make up for the pub owner’s lack of it.Â

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