Monthly Archives: January 2016

Antenatal Testing for Down’s syndrome

There is a new test for Down’s syndrome in the news again today. You can read about it here. It is non-invasive, so it will reduce the numbers of miscarriages following a screening test for Down’s syndrome. That’s a good thing, right?

We tell ourselves that screening is all about information. It’s about preparing ourselves for the future, going into it with our eyes open. I would normally go all around the houses to make a pinprick point, but not today.

Today there is no room for that. Today is a day for the truth.

We lie.

It’s not about preparation at all. If it was, the numbers of babies screened away would be lower. Wouldn’t it? Expectant mothers carrying a baby with an extra chromosome wouldn’t be offered a termination after 30 weeks’ pregnancy, would they? Doctors wouldn’t come to visit you with faces of tragedy when they give you a diagnosis, and they wouldn’t tell you what they would do under the same circumstances. Midwives wouldn’t hurry to your home, clutching results and talking about decisions.

Children and young people who die young wouldn’t have Down’s syndrome written down as the unquestioned cause of their death.

It isn’t, you know. It’s part of life.

 

Making friends wherever we go.
Making friends wherever we go.

Scales of Judgement

I have been roaming around the internet in search of some advice. It has been a long and fruitless search, I can tell you. When I started this blog there was loads of it, all at my fingertips. I was overwhelmed (almost) with it all. Do this, do that, do the other. In the end I ignored most of it and went along my own merry way. All except one piece, that is. And, of course, that is the one I can’t find. It’s always the way.

The advice I am looking for was about children. Oh, not the parenting sort, there’s plenty of that. The writing sort – and I don’t mean how to get them to write their thank you letters (although that is worth a blog post, I must say; Joe Kirby wrote a very thought provoking post on the subject, and I fully intended to fire off my own thoughts upon the subject, but I got derailed, I will catch up with myself Joe, I promise – sort of). I mean the way that we write about children.

As someone who writes primarily about her own child, I took this advice very much on board. Every time I write about Sam I consider how he appears to the wider world. He has no say in what I write about him – these are my thoughts, not his – so I owe him a great deal of responsibility in the stories I choose to tell. I must bear in mind his dignity, his personhood; I must write nothing that would damage him, or put him in danger.

This would be a heavy responsibility were he a typically developing child. As it is, he is not. He finds himself growing up in within the statistical bounds of the vulnerable. I posted some stats yesterday that illustrate his position – I’m sure there are more, should I care to hunt them down. As a vulnerable child, one with SEND, with Down’s syndrome, I must bear those statistics in mind when I write. I must consider the sad fact that many, if not most people are afraid, and if not afraid then discomfited, by disability – and that it is in part this fear that contributes to the bleak outlook on his future, and the future for many children and young people like him.

As a teacher, I am bound by similar restrictions when I put my thoughts onto this page. Professionally I must write nothing that would bring my school into disrepute; but more than that, I am bound by bonds of care for the children I teach. They are part of my wider family, if you will. What I write here, should I choose to write about them, will have an impact.

I weigh my words carefully. Do you?

Removing the Rose-tinted Spectacles

I was reminded today of this post. I wrote it, one day in May, in my pyjamas, sat at my kitchen table. I don’t write much of this blog in the kitchen, it has to be said, most of it is written from this sofa, in front of this fire, my family crowded around me (well, the first drafts, anyway). I like to think of myself, in my I’m-a-novelist-fantasy moments as a bit of a Jane Austen, but without the cap. For one thing, the kitchen is far too cold, even in May. But that Saturday morning I had a bee in my bonnet, and I had something to say that would not wait. Tonight, despite the fact that I have eaten too much chocolate log (it was on special offer), I feel the same way.

The original Secret Teacher, and the accompanying debate around inclusion and how difficult it is, is doing the rounds again. It’s too hard, these children are too difficult. They make life miserable for the mainstream and should be separated off so that they can make friends with their own kind, it seems.

Funnily enough, I have a lot of sympathy with much of that view.  It is hard to work with children and young people with SEND. Children with complex difficulties (and even those without), my own son included, can be disruptive influences. He deserves the chance for a meaningful peer group as much as anyone else. When it goes wrong, when relationships crumble (and that’s just the adults), when the support that classroom teachers need to do their jobs properly isn’t there, when knowledge is weak, the whole thing can rapidly descend into a nightmare. If you’re going to do inclusion, it needs to be done properly.

The thing is, though, that much of the debate centres itself around what is good for adults, namely teachers, and the needs of the mainstream population to live their lives untroubled by the needs and difficulties of children with difficulties – and that’s where my problem lies.

Oh, I’d love for life to be easy. I’d love it to have turned out differently, and I’d have the kind of children who went to bed and cleaned their teeth without supervision, who did their homework with no complaining, who never got ill and aced all the tests. It would be great if I didn’t lose sleep every August, waking in a cold sweat, worrying about the term to come. The stresses and strains of the teaching life, even though I am the part-timer; if I had a magic wand I’d reduce those a bit.

But I do not deceive myself. I do not pretend that it would all be better if only those troublesome kids weren’t in my class, in my school or in my home. I make no claim, even though my son goes to an exclusive school, that the use of an educational sorting hat is somehow an answer. Because I know it’s not.

I don’t look at these stats very often. My son has complex and profound learning difficulties, Down’s syndrome, and, in order to live every day, to make my home a happy one, one that is not dominated by fear and anxiety for the future, I indulge in a little selective looking. But because I think this is important, because I think looking beyond the school gate and the school years is a necessity for those of us who work in education, I’m going to break a rule and I’m going to lay it on the line.

Children and young people with SEND – and that’s all of them, not just boys and girls like mine – are twice as likely to be bullied at primary school as you were.

They will be six times more likely to receive a fixed-term exclusion from school than you.

They will be eight times more likely to receive a permanent exclusion from school than you.

Once they’ve left school they will be seven times less likely to work than you.

If they are lucky enough to work, it will probably be part-time. It will probably be poorly paid.

They are one and a half times more likely to live in poverty than you.

They are over four times more likely to have mental health problems as a child than you.

They are more likely to have children with their own learning difficulties than you.

They are at least three times more likely to end up in prison than you.

Children and young people like my son will die at least 15 years younger than you will. And before you try to comfort me with talk of heart defects and early onset Alzheimer’s (thanks for that) let me tell you about the story of the uninvestigated, unexpected deaths of many people with learning disability in one NHS trust. Let me tell you about the little boy with Down’s syndrome who went into a hospital one morning with sickness and diarrhoea and ended up dead by the end of the day.

We might like to tell ourselves that a little bit of segregating will make life better for everyone and everything in the garden will be rosy – but that’s what we already have and it’s not rosy, not by a long chalk. Issues around inclusion need debating – there is no doubt about that. Labelling and its effects, the use of TAs, data that shows so many children on SEN registers because they were born in the summer, accountability measures and financial cuts that make it difficult to make children’s education the most important thing in schools; all these things are worthy of debate without recourse to fear of who we might offend.

But let’s not kid ourselves that out of sight and out of mind is the answer; someone else’s problem. Let’s not pretend, play the demonising game with a little bit of them and us, let’s not kid ourselves that we don’t have a part to play, that we haven’t got the wherewithal to make a necessary change. We have. And we must. Lives depend on it.

 

With grateful thanks to Jarlath O’Brien for the stats.  Like I say, I don’t tend to look.