Monthly Archives: July 2017

The Year of Leaving Dangerously

OK, so I have maybe stretched a point with the title of this blog, but I couldn’t just end it with ‘leaving’, could I?

The end of the summer term is here.  The hubs is in the kitchen cooking curry, A and L are sprawled upon the sofa, still in uniform, slowly discussing the events of the day in little dribs and drabs.  Sam is upstairs, music is cascading in a torrent from his open door, and I, sitting at a little table, am steadily ignoring the domestic chaos and tippy tapping the computer keyboard instead.

Just like all the other years, I have made it to the end of July by the skin of my teeth.  Like every other year, the last three weeks have been dominated by sports days, school reports, the mad dash to buy gifts and cards of thanks, school plays and the emotion of final assemblies, albeit this year from the parental edge rather than the staff centre.  This year, my heart strings have been twanged by just three children, rather than thirty-odd of them.

This year has been significant in its leave taking.  L has reached the end of Year 6.  She has just this moment stepped over the threshold of her primary education, and I find myself wondering whether she will join the ranks of girls who insist on wearing thick black tights, whatever the weather, or whether she will carry on with socks and cool comfort.  And Sam, he has made the biggest change of all; today he left his special school, ready to take up a place at the local mainstream college.

To his credit (and possibly his teachers have had something to do with it too), he is far more prepared for the move than I.  He left with a cheery wave and a ‘see ya!’, while I was required to hurry up and tag along, wiping away the unbidden tear.  He is satisfied that College will mean exciting times and growing up (and, to be fair, I went to a college, and I had an awesome couple of years of growing up and having fun), and I, ever anxious, am worried that his timetable doesn’t seem to have much maths and English in it.  We are entering a new era indeed.

It has been a slow process, this leaving, a bit like when you finally release yourself from the clutches of a sticking plaster, pick by pick.  A house move, new schools for A and L;  it has been a long time coming. When I look back, I can trace its roots, its beginnings, to over a year ago, to the moment when I realised that I could no longer stay on at my school, that the time had come for me to go.

I haven’t really written about it, not in an open way (I wrote this with a friend – and then all my best sentences got cut!)  I haven’t known what to say.  There is a mixed-up feeling of loss and relief, and it’s hard to untangle.  Instead of trying to tease it out, to make meaning through writing, I’ve left it; an undisturbed scab.  I haven’t been in a school, except in a parental capacity in almost a year and I’ve been glad.

So now, like my children, instead of focusing on the pain of what is left behind, I’m turning my face towards the future.  It’s a new college and school for them – and me.

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Afraid

I was chatting the other day,  with some mothers of children with Down’s syndrome; what was it about Down’s syndrome, we were asked, that everyone, the world and his wife, finds so scary?  It’s a question that knocked on the door of my consciousness long before it was posed.

You can find a post on the fear of disability, and Down’s syndrome here.

It doesn’t happen straight away, but once your child is no longer a baby, or a cute toddler, a little one in a too big school uniform, once your boy starts to turn into a man, people’s attitudes change.  The miasma of fear hangs around them.  A fear of male sexuality.  A discomfort with a feminised masculinity; a man who will always need to be helped.  A not-quite someone.

You can find a post about Down’s syndrome and manhood here.

And I have written about the judgement on women, on mothers who dare to have a disabled child. Framed as choice, the discourse has more than a whiff of judgement about it, there is a you made your bed now you lie in it stench.  I have read about, thought about and written about the blame that is hung around the neck of mothers of disabled children.  Too needy. Hysterical. In denial. Awkward. Liars, even.

You can read a post about the inherent sexism present in our schools here.

Mothers of disabled children are set about with rules. In a digital age, we are told we share too much. We place our children in danger; we share stories that are not ours to tell, as if the stories of women, of mothers, are somehow less important, less deserving of a hearing.  In an economic time of debt and austerity, we must both pay the bills and stay at home. We have no need of ambition; our fate is to lay ourselves down at the feet of our children, the price we must pay for bringing to birth a disabled baby.

Today, for work (although I’d have read it out of interest), I read a report into the mental health and wellbeing of children with SEND (that’s special educational needs and disabilities) in schools, and, to be honest, I wasn’t shocked.  Depressed and angered, yes. Shocked, no.  You can read it here.

You see, we know that SEND is intimately connected with poverty and economic and social disadvantage.

We know that having a disabled child puts a strain on adult relationships and many such children grow up with an absent father.

We know that teenage girls are deeply unhappy with the world around them and their place in it, and that this is especially pronounced in girls who don’t, or who feel they don’t fit in.

We know that disabled adults and children face greater levels of bullying than any other group – and disabled girls even more so.

The report paints a picture of a toxic cocktail of powerlessness centred on the experience of women and girls; of individuals caught in the feminised state of disability.  No doubt there will be calls for change, for interventions or plans, for government backed initiatives, citing the well known unhappiness of the UK’s children in justification.  We have a big problem, requiring a big solution.

Except we don’t, not really.  To be kind costs nothing.  To be alert to bullying and to help our children and put a stop to the behaviour that has blighted the lives of so many costs little; some thought, some understanding, maybe a bit of training and a heap of commitment.  Challenging workplaces and demanding societal support for families, so that caring is shared, not carried by one person, might take a bit more, but still.

Without that commitment to change, when you look at it, when you really look at it, who wouldn’t be afraid?

 

Selection and Choice

One of the things you get used to, when one of your children has Down’s syndrome, is being asked a lot of questions.  They can be anything from the sort that come from officials and questionnaires about his ‘needs’ (like, how am I supposed to know when it is a new situation and I’m not there?) to the most common of all, accompanied by the sympathetic head-tilt and sing-song intonation of, ‘did you know?’

The did you know question became so ubiquitous when Sam was younger, a soundbite comment on the public nature of motherhood, that I became sorely tempted, in the faintly hectic way of the sleep deprived, to answer through dramatically bared teeth, ‘No, I ordered him from the baby shop especially because I fancied a more complicated and difficult life, thanks for asking.’  I never did, but my friend Meg and I used to laugh about it.  We’d decided that laughing at the world and its judgements and opinions was a better option than the alternative, which was to drown in a sea of self-blame and fear for the future. So laugh we did, imagining all the shocked faces at our reply.

The thing that always gets to me though, the poisoned dart hidden deep within that question, is the underlying assumption of choice.  We like to think, in our 21st Century Western way, that we have a lot of choice, as if we could indeed go into a shop and point at the baby we wanted, the one that satisfied our list of demands, as easily as that.  But, of course, there is no such shop, and no such easy choice. The best we can do is offer some sort of selected screening.  We set the criteria, genetic trisomies, duplications, serious diseases and disablements, and we screen; a blood test, quick and easy, but hardly painless.

Again and again I find myself questioned, this time upon my position (because, it seems to question why a woman might choose to act as she does, to make a smothered request for the kind of surrounding circumstances that enable women to make an informed choice, is not the sort of question I should be asking) and I think it comes down to one idea, one fundamental notion; to serve.

Which brings me to my point about selection.  In edu-land this year there has been a lot of handwringing and wailing (these are technical terms, you know) about the possibility of a re-introduction of grammar schools.  ‘We are giving parents more choice!’ declared the politicians.  ‘You can’t choose a school that works on the basis of selection!’ replied the critics.  The argument went back and forth for the best part of the last year, and, when it turned out that after the General Election the government would not be able to carry out its plans, there was a collective sigh of relief.

However, and here is the thing, selection, whether we like it or not, is already present in our education system (and I’m not talking about those areas of the country where we have grammar schools surviving).  It’s not necessarily an explicit thing, not by any means, but it is there.  You only have to step through the school door with your disabled child and you run slap-bang into it. ‘You have to think about what They take away from the others’, ‘They do special needs much better than we do’, ‘We can’t meet his needs because of *insert safeguarding/stairs/toilets/staff/whatever reason here’; the comments fall on your ears and enter your heart thick and fast.  Putting it simply, when schools set conditions on the kind of children – or the kind of parents, even – they welcome, formally or informally, selection is in action, just as when you set criteria on what kind of baby is an acceptable one to join your family.

Some schools are better at hiding it than others.  Some schools are honest and up front.  Whatever it is, it means that while we might say that on the surface that we have an inclusive education system, in practice I am not so sure.To me, there is an aspect of taking life as it comes versus the desire to control.  Our humanity ensures that life is not some sort of perfect set of events; there are frailty, mistakes, unhappiness and joy along the way.

There are great schools around the country whose head teachers subscribe to the premise that the local school serves the local community, who take life as it comes (we sent our children to such a school), but I am tired of the pretense that this somehow means that everyone works to the same high standards.  I am tired of the educational rejection, formal or informal, through the setting of selection criteria dressed up in the language of choice, of disabled kids with imperfect parents and fallible families. I am tired of the way that great inclusive schools act as magnets in their area, because families know that at least there, they will be welcomed; of the way that it is not acceptable for bakers shops or hotels to choose their customers, but somehow OK  for schools.

It makes me wonder, when all is said and done, just who we are serving.