Tag Archive | children

Life, death, handicap and suffering.

There are those who have read about a little boy whose parents have sought desperately to keep him alive, those who have read of a little girl whose mum’s hope is that she may soon pass painlessly and with a dignity too easily denied.

Those of us who have lived with profoundly, heroically handicapped children have a tendency to keep quiet. There are things you don’t want to know. If, however, you are going to form an opinion, make a  comment, perhaps you should know. And after keeping pretty quiet for a quarter of a century, I’m setting out to try to deliver some truth.

Little Matters of Life and Death.

Think of the worst crime that you can imagine. Take some time about it – it needs to be a truly awful crime. Then think about what you would do to the perpetrator of that crime if you had the power.

How about this: you would lock them up, in solitary confinement, the only voices they would hear would be those of their guards and their guards would be chosen specifically because they did not speak the perpetrator’s language, so that whatever words our perpetrator heard would be completely unintelligible. He must also spend the rest of his life blindfold and have all his limbs pinioned so that he can do nothing whatever for himself.

Sometimes during his incarceration someone will come in, say something unintelligible to him and then either give him a hug, stroke his face or his hands, apply a hot iron, a sharp blade, a crushing weight or some other instrument of torture to some exposed part of his body. He is not to know why this is happening, or when, or for how long – once it begins – it will last. It is important that neither pleasure nor pain make any sense.

He must live in a world of total silence, save for those occasional meaningless voices, and must not be allowed to read, to listen to music or anything vaguely resembling music, nor to watch TV. Neither is our perpetrator allowed to taste food. A tube is inserted into his body so that the food is transmitted directly, without taste or texture.

The sentence, by the way, is for the rest of the perpetrator’s natural life. There is no escape until death.

Barbaric, is it not? For what crime would you punish someone in such a way? But there are people who ‘live’ like this. They are the profoundly, heroically handicapped, who have committed no crime at all.

Like our putative prisoner, they may smile, occasionally, if they come to associate a particular voice with a consequent pleasure, the little petting, the hug, but they do not know what these things mean.

They do not have language. They have no words for what they feel or for what they fear, for what they enjoy or for what they suffer. They have only incomprehension. They ‘live’. They breathe, they receive food, urinate, defecate, they have some sense of physical comfort, a frightening sense of physical discomfort – frightening because they do not understand where it comes from, what is happening, whether it will end or go on forever.

How do I know this? Because this was my daughter’s life for the four and a half years of her existence.

Is it possible to explain how deeply, or even why, I loved my little girl so much? Perhaps not.

There is, of course, something awesome in seeing a child born, in holding him or her in your arms, knowing she is yours. You know that she is and always will be a part of you (at least, this is true in most cases, but there are, of course, parents who are not loving parents, much as we would like to think otherwise).

There is no feeling in the world like holding your own child to your breast, seeing those preposterously tiny manifestations of his or her humanity – genitals, eyelashes, fingers and fingernails, toes – and carrying in part of your brain the story that is just beginning and which, in normal circumstances, will be part of your life forever.

That story is based on expectation and a rather casual faith that – for you – things will happen as they have happened for the vast majority; seeing first steps, hearing first vocalisation, first words, seeing first smiles, hearing first laughter, hearing a voice develop from that of the child to that of an adult, experiencing the everyday and ordinary with that child, taking them to nursery and to school, answering their persistent questions, helping them choose their educational and ethical/moral pathways, sharing birthdays and feast days, holidays, sharing jokes, choosing birthday and Christmas gifts and cards, collecting the photographs and memories that one day you will cherish as your child moves on to the life of their own with others of their own choosing. Prom. Graduation. Marriage. Occasional heartaches through which both of you grow.

But for some of us that story cannot be told.

Jenny would never take first steps. Indeed, Jenny would never have the capacity to so much as roll her body over or begin to crawl. She would never sit up, except when the specialists designed a padded, hinged steel frame that could hold her in that position. Nor did that sitting position mean anything to her. Almost nothing meant anything to her.

She did not – could not – reach out and/or grasp. Blind, she saw nothing, understood nothing, to grasp at. She comprehended neither the sound of toys or devices nor their textures, would flinch at the gentlest, most loving touch to her face.

She could never walk, would never walk, never talk, never run. She laughed once, in early days, but that lasted just the one occasion, and when tears came to her eyes or she vocalized they were rarely anything but the expression of uncomprehending pain.

There was this, and you should perhaps ask yourself what it means that this is among the best memories; the damage to her brain was such that immediately after an episode of pain came to an end – the very instant, that is, that it came to an end – she appeared to forget all about it. She showed no sign of living in dread.

Best memory of all? She knew when she was in her daddy’s arms and would giggle and chuckle often when he bounced her in them.

But that is a small memory made huge by its disparity from the norm. Sitting by her bed on any one of her many stays in hospital and seeing in her no sign of recognition that we were there? That is a bigger memory, and a painful one.

“It’s all going to be alright, my darling. Mummy and daddy love you and will do everything they can to make you happy.” When those words are meaningless to the one who is intended to receive them, when you cannot tell them that the pain they are experiencing will pass, that becomes a big memory and a painful one.

It is not going to be alright. Ever.

You cannot kiss this better. You cannot love this better. And the knowledge that this is so tears you up inside such that you will feel the pain within you even decades later.

In spite of everything you do as a parent, this child will suffer. That you will suffer is a given, but it does not – to most of us – matter. What does matter is the sentence that such a child is serving and the question as to whether, when that suffering is at its worst, it would be the most human and humane action to allow that suffering to end. Even to enable it to end.

Even as a I write this, my mind baulks at it. I cannot crush an invasive ant or swat a fly without some sense of remorse. I believe, however, that we have to think about it, to face with courage one of the most difficult concepts there is to face.

Nor is the ‘sentence’ I described earlier the whole of the picture. To paint that whole picture would probably require a book, because it would require me to detail the myriad ways in which we and our society fail handicapped and profoundly handicapped children and their families.

We humans are not as virtuous, not as highly-developed, as highly-evolved or as compassionate as we like to imagine ourselves to be. At some time, we will have to face up to that reality. It will hurt, but it seems to me unfair that we should seek to avoid that hurt when our doing so continues, ferociously, to hurt so many of our children and their carers.

Copyright

Richard M Thompson

25 July 2017

When will they ever learn?

A vox-pop interview in a Texas college seemed to indicate a quite deplorable lack of certain kinds of knowledge, such as; ‘Who won the American Civil War? Who is the current Vice President of the US, When (and from whom) did America gain its independence.

I was a tad shaky on Joe Biden and knew the date of Independence, though at the time I wasn’t entirely sure, but then I am British, am English, so some would argue I have more excuse.

I have only recently retired from education. ‘Withdrawn’ would be more accurate, since I gave up because I found myself in an environment I was finding it increasingly difficult to cope with.

I had been a Teaching Assistant in a primary school and became, about a decade ago, a Learning Support Assistant in a secondary (high) school, working particularly with children on the autistic spectrum. Lovely kids, some lovely adults, but a lot of things with which I was not at all happy.

History and English are perhaps my favourite subjects. It did not make me happy that, too often, I would support a child in a History or English lesson and find both the student and myself bored to tears.

There are a number of problems in education.

One major problem is parents. Often they either show too little interest in what their children are doing, or how they are getting on, and too often they show the wrong kind of interest, defending behaviours in their children which are all but indefensible. Discipline has become a serious problem for many teachers, whilst what was available was too often inappropriately or inadequately used. It was far too common to spend time in a classroom where the teacher made repeated threats of discipline only to fail to carry them through. And some of this has to be down to lack of sufficient support and encouragement from managers.

Another major problem is the attitude of many towards teachers, often including management and government. Few professions can have faced the undermining that has been faced by the teaching profession. A good teacher is arguably the most valuable resource in society, because without good teachers you do not have good education and without good education you do not have appropriately qualified nurses, doctors, teachers, law enforcement officers, parents, administrators, representatives… anything. We all need to learn and we all need to learn well. Without good teachers we have nothing. And one of the main reasons some teachers are ‘less good’ today is the continuous pressure to reach certain targets.

Targets, and much in education, are based on some very dubious suppositions. The first, and oldest, is that children can all access education and learn at the same age, and that they can be expected to progress at the same rate. It is not common practice to keep a child back in primary school because they are not yet ready to progress into secondary school, and it is not common practice to keep back children during the intervening years because, again, they have not reached the same levels of attainment as most of their peers.

Instead, it is common to set attainment tests of one form or another which are supposed to demonstrate that a child in one year is ready to progress to the next, but which in fact demonstrate only teachers’ ability to ‘teach to the test’ or the school’s ability to fudge the results. Nobody actually wins, but the tests – ‘taught to’ or fudged – provide statistics by which – say the powers that be – schools can be judged.

We should not assume that every five year old is equally able to progress simply because the calendar says ‘September’. Nor should we assume that every child at a given age is equally capable, equally attentive, equally understanding and is not in any way impaired in learning ability by factors such as illness, home-life or by one of the alphabet of conditions such as ASD, ADHD and the rest.

In the UK it is incumbent upon teachers to provide struggling students with ‘differentiated learning materials’, materials, that is, that are designed to help those who have a lower level of understanding or ability. In a decade or so I could count the number of differentiated materials seen on the fingers of one hand. Teachers, again, often have not time to produce or find them.

Progressing, then, we come to ‘new technology’. A senior idiot in UK education, whose name I have long forgotten, asserted not too long ago that ‘the value of computers in learning and teaching has not yet been proven.’ This is eyewash. Were computers somehow completely distinct from other technologies there might be arguments, but the computer encompasses a vast number of resources which have been part of education since before computers existed. My own primary and secondary school education, which ended half a century ago, was informed by the school piano, by slide-shows, reel to reel tape recordings and movies shown on Super 8. The equivalent, in terms of music, audio-visual presentation, film and more, is far more accessible via the computer.

The computer also enables interaction, allows the student to do something and obtain a result, can facilitate research and open an unbelievably wide world to young eyes. When it is used effectively.

One of the biggest surprises to me, apart from the relatively poor level of actual literacy among some teachers, was the poor level of computer literacy. Far, far too often the digital whiteboard had become merely an alternative chalkboard, with poorly-assembled PowerPoints the principal go-to as an alternative. Often the only significant difference between what was on the digital whiteboard and what was on the wipe-clean whiteboard alongside upon which teachers scribbled, was that the text in the PowerPoint was not hand-written.

Technological innovations seemed to exist, often, only in order to be disparaged. “Nah, that won’t work,” being almost a mantra. Yet I have seen technology used to make a dramatic difference. I have used it to make a difference.

Four rows of tables in a very large primary art classroom, each table draped in newspaper and a protective cloth, 25 to 30 children with boards and a piece of clay in front of them. First they sat to watch a short presentation, still images and video clips, explaining every step of the task – making any one of 3 different kinds of pot – that was before them. During the presentation the teacher explains the task and answers questions. After the presentation the kids get down to it, only there are now five screens around the room on which the presentation is cycling over and over. Now, although they can ask, they don’t need to. The presentation reminds and guides them. Now, although they can ask, they ask each other, collaborate with each other.

The results were everything we could have hoped for, from the thumb pots of the KS 1 children through to the slab pots of the KS 3, and the lesson one of the quietest and most productive I have known.

Oh yes, and at the end of each presentation the kids applauded.

To the last bit, for now. ‘Incidental learning’.

How is it that before I reached college age I knew more about the American Civil War than many US college-age kids appear to know today?

First, the world in which I lived almost half a century ago was very different from the present. In the UK we had – if I recall – just two television channels, and I never heard of anyone -at that time – who had more than one television set. One consequence of the latter is the fact that at times you would watch something just for the sake of watching it, for taking a break from whatever else you were doing, so you encountered things that were not necessarily of your first order of interest. Another consequence was that you would see and hear things which were of very little direct interest simply because someone else in your house was watching it. When my mother watched a soap, or watched Wimbledon fortnight on TV, and when she watched the news, most often I would at least half-watch it too.

I did not have the alternative, especially on an average rainy day, of going out or, more particularly, going to my own room to play on a computer, a games console or watch my own TV.

I believe I absorbed certain things as a result, without ever setting out to do so.

In that different world, too, things were changing, some coming to an end. The steam trains that were a commonality would give way to the new, less-exciting electric and diesel trains, the sounds would change, the pits, the textile mills and the steelworks which had been the nation’s industrial heritage would begin to fade into oblivion. The countryside would change, as farming changed and as towns and cities expanded greyly along the railroad track.

What was ‘now’ was becoming what was nostalgic. Out of that ‘now’ came movies, literature, ways of being and seeing that would change. If I watch a 1950s British movie today I see things with which I was once familiar. If you can persuade a modern teenager to watch the same – since he naturally eschews anything in black and white – he would see only things which were alien and irrelevant.

We can be exposed, always, to things which pre-date ourselves, as I was. There were some great British movies set in mills, factories and mines, and out of them grew literature that was still recent enough to be relevant. To this day I remember a poem called ‘Factory Windows Are Always Broken’ (by Vachel Lindsay) and the lyrics of “Don’t Go Down In the Mine, Dad” (seen as a series of picture post-cards in my granny’s collection). Mining disasters still happened, and none of us who were around will ever forget the disaster of Aberfan when a rain-soaked slag heap buried a school in Wales.

Now the coal mines, the steel mills and the factories are largely gone, yet it is not unusual for a student to be faced with the analysis of a poem which was a product of that age. Many will not be able to relate parts of that poem to anything in their experience, have not absorbed anything much that will be of help to their understanding.

Fifty years ago, too, I belonged to a nation to which war was still freshly remembered. Not a modern war, poorly explained and poorly understood, to which soldiers are sent and return without receiving, often, the blessing of their countrymen. My grandfathers both remembered the Great War (WW1) and my parents generation had survived WW2. One consequence was a broad swathe of material that was war related, from documentaries shown in the evening and at weekends to movies whose poor sound and visual effects we had not yet learned to notice, and to popular boys comics and illustrated magazines. We thought our country had done well and had done right and we found pride and meaning in it. That no doubt informed my attitudes toward the American Civil War, to which I was probably introduced by the movie, and subsequently the book, ‘The Red Badge of Courage’.

I would argue that children are not, now, subject to the same kind of incidental, passive learning that children of my generation experienced. In effect they have too much choice, and too much of that choice is deleterious to the right kind of development. If they don’t want to watch the news, don’t want to keep abreast of what is happening, they can go play on their console, watch any one of hundreds of channels on their own TVs or delve into the least useful of ‘interests’ on their computers. They watch nonentities achieve fame by doing nothing that any normal, balanced person would want to do, absorb values that are all to do with price and nothing to do with worth.

They are, as I have repeatedly said, like kids deposited in a huge supermarket and told to feed themselves. The confectionery, candy counter contains everything they like and want, not knowing what they need, and few will progress beyond it.

 

 

 

 

Simply Grieving

“I don’t know how you can cope.”

They stood by my daughter’s hospital cot and shook their heads. Parents/carers with their own children receiving attention, some for epilepsy, some for infections, some for bone breakages or burns.

She was massively handicapped, had a cocktail of problems that nothing, in the end, but death could cure, and our hearts were broken.

Down in the waiting room, the one place you could smoke then, I listened to a woman rant at her husband about the delay they were having, waiting for a medic to get back to them about her daughter’s broken arm.

A broken arm? Part of me thought. Jesus, what’s that?

And then it struck me. This was her child. There was no scale of bad-to-terrible for her, it just hurt, and hurt and hurt.

She wasn’t making an unnecessary fuss. She was simply grieving.