There's a ditch where I grew up that was made by human hands. I say hands, literally, because the ditch is prehistoric. So no wheels or fancy implements. Just dug out. It's an unbelievable ten kilometres long. A staggering monument to human perseverence and determination, the Dorset Cursus runs across the English countryside like a sword blade. I'm thinking about it right now, because my son wants to do more study of landscapes. He wants to compare England and New Zealand. This should be easy. When I came to New Zealand, I found the Maori fortifications on Auckland volcanoes looked very familiar: to anyone who grew up in the area of Stonehenge, terraces and earthworks, the digging up of the landscape on a grand scale seems natural, an intrinsic part of the land, not a destruction or alteration.
Hard work, though. In the case of the European monuments, we know little about the diggers. We can only guess what the earthworks meant to them, and why they persevered through illness, hunger, the ongoing struggle for survival. They must have meant more to them than life itself: perhaps the survival of the tribe, or the family.
Parenting children with additional needs, whether by illness, disability or developmental delay, can feel like digging out a ten-kilometre ditch by hand. Yet, rather like the diggers of prehistoric Europe, the work is largely overlooked, invisible: the families who live that complicated life do not feature in many glamorous lifestyle magazines. "And in this artful corner, the family have carefully placed the most gorgeous little commode...over here, you have to admire the artistic sensibility with which this wallpaper was ripped, and those adorable little head-banging marks on the door." Like those ditch-diggers, who perhaps occasionally dared to wonder whether this work was really as sensible and logical as it seemed, the task of parenting kids with additional needs can feel a bit, you know, onerous and ridiculous. Why put ourselves through such unrewarding labour? The answer, of course, is that no one else is there to do it, and the child seems to need our help: just as the land must have seemed to need digging, or the stars demanded that the ditch be begun, or something. Something deep and primitive and unspeakable, but also urgent and necessary. Child-rearing, the mother instinct. As strong and as determined and indefatigable as that strange early human need to dig up large chunks of the English land.
Because that instinct has such strength, and drives those of us mothers who parent SN children to what must seem like crazy lengths, excessive commitment, ridiculous zeal, so there is the popular and I think unhelpful iconography of the SN parent (particularly mother) as saint, or superhuman. You know, the "I don't know how you do it, you must be so amazing." "Special children are given to special people." Of course it is nonsense, any more than the men and women who lived through the London Blitz were special or amazing: they had to bear difficult circumstances because they were there, having bombs chucked at them, not because they were somehow different from their compatriots in the countryside or overseas. I'm quite prepared to admit to a parental talent for eating chocolate. Other than that I think I'm good in some ways, lousy in others. But I try not to be irritated, because I know these people mean well, and it's a way of trying to encourage a fellow human along a difficult road. And God knows, I could use some encouragement at times.
When professionals start on that line of argument, though, I grow suspicious. It's generally a tactic: build you up because we are about to tell you we have no funding so you will have to do the therapy yourself, or not offer you the family support you have requested. It's blarney, designed to soften you up. But at least it's not harmful.
What I find far more challenging - and what I have encountered far more often since my eldest became so sore - is the smug professional assumption of the overqualified and undereducated-in-life health professional. Which is that somehow you are to blame for your son's failure to thrive, to learn to speak, to play appropriately with his friends, to recover from pain. This smug nonsense crosses all bands of developmental and physical difficulty, and I have many friends who have recounted it to me. "When my son was attacking me at home for years, they told me I had to learn better parenting strategies. When he started attacking his teachers, they were the victims and they immediately sent in an army of professionals to support him in the classroom." I remember saying to a social worker in the UK that I needed to be taught how to restrain my children safely, because if they were out of control then one of us were going to get hurt. No one would train me, though, because parents were not allowed to be shown how to restrain their children. The assumption is that it is you that are at fault for your child's violence, rather than your child's violence is biological and that you need help to manage it safely. It is given unquestioningly to professionals working with these children, so why not to parents?
With the onset of my son's chronic pain, I discovered a whole new torment. The assumption of approximately fifty per cent of all the health professionals I had to deal with was that I was in some way "enabling" or "encouraging" my son's pain.
Don't comfort him.
Don't ask about the pain.
Don't go to him when he falls over.
If he says he is in pain, tell him you are feeling fine, so that everything must be OK.
Don't give him pain relief.
Don't use the wheelchair. Make him walk. He won't need it if you don't let him have it.
Don't install a ramp, or a lift, or any other vital equipment, because that will make him think of himself as disabled.
Don't let him play with the other wheelchair-using kid at school, because that will make him think that he wants to be in a wheelchair for life too.
Don't let him have fun racing in his wheelchair, ditto.
He must be in school. Home will make him worse not better. Home education is the worst idea of all.
If you can't physically get him to school, or school calls and says he needs to come home, then make sure you don't spend any time talking to or interacting with him during school hours.
He's just getting what he wants by being still. You need to take away the toys and games that amuse him in order that he has an incentive to move around.
I wish I had invented this list. It seems like a satire to me. When I read them back I am horrified anew by the cruelty implicit in the idea that the best way to deal with a child's pain is to pretend it isn't happening, treat it as a behaviour issue. Trying to deal with this nonsense is like digging a 10 kilometre ditch whilst someone comes alongside you filling it in, then blames you for the fact that it isn't finished yet. So I don't argue, or engage, any more. I simply refuse to deal with that professional any further. It is quite liberating, really, I wish I'd thought of this strategy months ago.
Of course, some parents doubtless do make their child's pain worse by fussing about it. Just like some special needs parents truly are amazing. But the point is that whether you are being praised to the skies or trod into the dust, the parenting appraisal is based on prejudice, generalisation and stereotype. I am not causing or prolonging my child's pain by my maternal instinct to take care of him when he is sore, any more than when my middle child was failing to learn to speak it was a sign that I was a superb special parent. I just am, the same as other SN parents are, we muddle along doing the best we can, sometimes that is excellent and sometimes that is dire. We are digging a very big ditch, and it is taking a very long time. And we anticipate that if we are very lucky, and we do complete this project as planned - if our child does manage to grow up healthy, happy and loving us - then the hard work we put in will largely be invisible. Just like the great Dorset Cursus ran across England unnoticed for thousands of years. People just thought it was the landscape, the way the countryside was. Or the product of another, magical era. (I was told as a child that the local legend was of a Giant having scraped it out with a spoon) Only with aerial photography and modern archeology was it identified as a colossal monument to blood, sweat and toil.
My hope is that as medicine advances and therapy develops, we will have fewer children like mine, who are wound up like springs by their own behaviour or who lie in a crumpled heap, begging for pain relief with the effort of getting out of bed. Hopefully the efforts that I go to will seem to later generations as archaic as doing the washing by hand, or following the horse with a hand-held plough. And to my children, I hope that their recovery and development is so total that all this is only vaguely remembered, like the legend of the spoon-wielding giant.
But if I want that to happen, if I want my work to become invisible, then I need to ignore the siren calls to make my son's life worse by scoffing at, ignoring or otherwise denigrating his experience of pain. For a start, it is ridiculous to pretend it isn't there, like staring at the Cerne Abbot Giant and trying not to comment on the fact that it has an enormous willy. I'm sure the Victorians tried, but I don't go to the Victorians for suggestions on healthy childrearing. And therein lies the other problem. You can repress your child, you can demand that they shut up about their experiences. You can teach them to suffer silently, if you are so minded. (I went to boarding school, I know a lot about that). But the one thing that troubles me about the majestic scope of the Dorset Cursus is that - just like the Egyptian pyramids - I very much doubt that it could have been built without forced, or slave labour. They probably discouraged their slaves from complaining of pain or tiredness too. And I very much doubt the slaves forgot their pain as a result.
I don't want the same scars to wreck the relationship with myself and my son. So I probably err at times on the side of kindness. Today we got halfway up our (preposterously steep) drive, and told me he was sore. We carried on to the top, where he started to worry that he was too sore to take the walking bus to school. I could have forced him, pushed my luck. He would probably have obeyed me. But I don't want to be a slave-driver. I don't want that to be an ugly scar in his psyche, to add to the pain and hardship of that time. We walked down the drive together. Another day of home education, then. Yes, it is hard at points. But I'd rather that than pushing him out to dig his own ditch in pain.
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