All posts by nancy

About nancy

mother, teacher, writer, ranter Writes for TES, Teach Primary, Bloomsbury.

We don’t need to be afraid

You know that thing where you wish you had a skill that you patently do not possess? I don’t often wish this – not that I am super skilled at everything, you understand, more that I am happy being me – but once in a while, I really wish that I knew how to make a film. I quite like making little movies of family life (I have a gorgeous one of baby A laughing), but the snippets I have collected over the years are only really meaningful to me. They don’t form part of any particular narrative and none of them are stitched together. They are simple snatches of time when I had a camera to hand, unusual in itself, especially when they were little. In the time it would take to find the camera and get it going, the moment would, nine times out of ten, be gone.

What I’d really like to do, I think, is make a film about our lives that people understand. Not that there isn’t any number of those kinds of films going round; I quite often write about them, after all. There’s the 50 mums, the young man whose brother is a soldier, the girl next door. These films are powerful and they tell parts of a universal story of love and life which we all recognise and yet they are subtly disruptive, which is, I guess, why I like them.

When I started this blog, I had originally intended it to go along in a linear fashion. To tell our story from the moment of his birth to now as a sort of autobiography. That is, until I got distracted by education and my plans went out of the window. Or, maybe, if I’m more honest and less covering my real feelings with a joke, as soon as I realised that revisiting painful experiences, parts of my life when I was really worried or didn’t know what to do, when I was overwhelmed by fear, I guess, was too hard to do. The process of writing a memory involves an immersion in that experience and that wasn’t helpful to me. Keeping everything on an even keel is quite hard work, after all.

The thing that I have managed, I hope, to keep hold of in terms of my original intentions though, is that I wanted it to be truthful. The more I’ve written about disability, the more I’ve read around and thought and looked at representations, particularly of Down’s syndrome, the more I see it. Two stories. The ‘high functioning’ (awful term), cheerful, loving angel and the other one. The scary one. The one that nobody seems to want to accept. Non-verbal. Mysterious. A living echo of a bygone age of institutions, an age we are supposed to have left behind. And the more I’ve thought and written about our lives, the more and more clear it is to me (and I hope to you, dear reader) is that the last thing our lives are, that he is, is a one dimensional caricature, one thing or the other.

One of the things I never thought I’d get to say in a professional context, and which I used to regularly say in the early days was that there was no such thing as a crystal ball. I can’t see the future, and neither can anyone else. It’s a good riposte to those who would prick my bubble of self-defence, you know, the one I continuously blow so that fear of the future doesn’t dominate my life. If I could have seen, taken hold of a spyglass and peered into 2020 back when he was born in 2001, the life we have now when I was a young mother with a fragile baby in her arms, would, I am sure, have been frightening.

But that doesn’t mean our story shouldn’t be told. It doesn’t mean I, or anyone else, should sugar coat the truth, that there isn’t dignity and love in the messy realness of disability, no matter what form it takes.  Life isn’t easy. But we need to tell the truth and keep on telling it, so that what was mysterious becomes part of the day to day. We don’t need to be afraid.

Please take the time to watch this beautiful exploration of the complexities of family life through a discussion by Alex Widdowson with his parents of his brother, who has Down’s syndrome.

 

 

Just About Coping

There’s a meme that pops up on social media every so often, entitled ‘just about coping’. It’s a lovely space where (most often) parents of children with Down’s syndrome get to advertise the joy that an extra chromosome 21 brings to their lives, how their families aren’t so different from typical ones in the face of overwhelming pity and the tacit societal understanding that life with a disability/disabled child must be rubbish. If you want a smile, search for the hashtag. I promise you will be uplifted.

This post, however, has nothing to do with that. This post is actually about the reality that is just about coping. With work, with life, with money, without money, with parenting, with disability parenting, with getting older and your kids growing up and everyone having different expectations of you and you finding that, instead of somehow being apart from the patriarchy because you disapproved of it, you are just as trapped within it as everyone else.  Life in 2020 doesn’t look like it’s going to get any easier any time soon (sorry), so if, like me, you have a demanding work life and an equally (if not more so) demanding home life and you haven’t got any time for wellbeing because you are, in fact, just about coping, this post is for you.

I haven’t written a wellbeing post since this one; and this one isn’t so much about physical (wash your hands when you get home, EVERY TIME) as mental health. Not that I am an expert, but if you feel like this and you are weighed down with a heavy mental load in both your personal and your working life, then these are the things that (sort of) work for me.

  1. Ditch everything you can. I have successfully ditched the making of the packed lunches and the doing of the weekly menu and internet food shop. It does mean that I have to eat stale bread sandwiches with fillings that don’t go to the edge, but as far as I am concerned, this is a small price to pay. The way to achieve this is to just not do it. That way, someone (else) has to step into the breach or there isn’t any food. It has NOT been a successful strategy as far as the disability paperwork and meetings are concerned, nor does it work with personal care or ironing, but I refer you back to the first sentence of this point. Ditch the things you can.
  2. Related to the above is to identify the things that drag you down and stop doing them (if you can). I hate cleaning with a passion. I hate it and it drags me down. I resent spending my spare time doing something that I dislike so much. I’ll do it if I have to, but it’s not something that brings me joy. I’ve got a really good cleaner now, to whom I am pathetically grateful, and it helps. My house is, as she tells me, getting better, and that makes my life more pleasant in general. If you’re in a job where people treat you badly, keep your eyes out for a different job. It can take a while.
  3. You don’t have to agree to everything. There are things you can say ‘no’ to. You can say no to things in your personal life and at work. It’s OK. You don’t even have to have a reason. You don’t have to be extraordinary to live a good life, to be loved and to love in return. You can just be you.

You may have noticed that there is a theme to my reflections; that of taking away rather than adding, of simplifying rather than increasing the complexity of an already complicated life. There are things you can’t avoid (here’s looking at you, bills) and things that you can’t avoid that lay you low (here’s looking at you social care and I can see you trying to get out of the way, Mr Mortgage); there are always unpleasant things in life that you can’t get away from that have to be got on with. Sometimes taking your brain out and giving it a rest is an excellent option. Sometimes carving some time and space out for yourself is an impossible task.  Sometimes all you can do is grit your teeth. Cope, just about.

Christmas is A-coming

There is a lot about Christmas-time that I don’t like. I don’t like the being ill. It’s a rare year when one of us hasn’t got some sort of hideous virus; before I gave up carol services, it was a tradition that, having learned all the parts, I wasn’t able to sing them. And the dark, dark mornings. I actually hate those. I hate having to drag my still sleeping body out of the warm cocoon of my bed, force feed it some breakfast and then drive to work. It’s torture.  And I don’t like doing it to my kids, either. The everything on top of everything else you usually do. That said, there are many things about Christmas that I do like, not enough to make it my favourite time of the year, but certainly enough to have it up in the top ten. The lights, the decorations, the ultimate in thumbing your nose at the darkness as we gather together and make our own light. The topsy-turveyness of the whole thing. I like that.

There is an inevitability about Christmas that I have come to respect. I don’t really have time to write this (I should be wrapping the final presents, ensuring that the number of gifts is equal for each child, I should be delivering parcels to beloved family members, washing my hair), even though I have taken some steps this year in an attempt to avoid overwhelm. Last year I limped my way to the Big Day, chucking out anything that wasn’t essential (gingerbread houses – gone! Red cabbage a la Nigella – nowhere to be seen! Cards? What are they?); this year, by doing some things ridiculously early (the lady in the Post office actually rolled her eyes at me during half term) and refusing to do some others, I have managed to carve myself some time to think and – strangely – today, I have given myself permission to write them (some of them down).

So, without stopping to think too much (if I do that, I won’t write anything because of Fear of Repercussions), here goes:

  • Working full time with three kids, one of whom is disabled, is very, very hard, and there is an extent to which I wouldn’t do it if I weren’t caught in an economic trap along with the rest of the world. There isn’t much time for anything else and every day feels like a treadmill and every weekend is not long enough. It impacts on my ability to maintain ANY social connection beyond working relationships, which, in turn, means that every day feels like a knife edge with no backup plan. Thank goodness no-one has been properly ill (yet).
  • When an acquaintance of mine who works in school improvement for a local authority told me one hot afternoon the summer before last that it would take two years before I saw change in my workplace after taking on the role of leader, and that those two years would be not unlike climbing an excessively high mountain the most difficult way imaginable, she wasn’t wrong.
  • When a wise woman said, ‘don’t try to change anything!’, she wasn’t wrong either. It takes a while for trust to build. People have to see you work, and work well. You have to learn your job. This takes time. Turning up every day can be enough.
  • Leadership is lonely. Disability parenting is isolating. There’s a reason so many people use social media.
  • There’s a difference between being a leader and being a manager. You can be a leader without being a manager; you can get people thinking and change their minds from behind the protection of a computer screen, but doing it up close and personal while checking that everyone has logged their sick leave correctly is entirely different.
  • You cannot allow work to take over your life. There has to be something else other than work. Yes, it’s good for my kids to see that I work too, that I do not exist to service their needs – but I do need to be there for them at the end of the day. It is I who should dry their tears, not they mine.

And so I am back to the inevitability of Christmas, the forced stop and do something else, something that isn’t work, that isn’t dreaming about work, thinking about it, writing about it. This year I am grateful for it.

Happy Christmas.

An Apology

Apologies for the silence. I’ve been a bit busy. I’ve been busy working, stretching myself thinly and growing fat on oven chips and posh pizza (we don’t like cheap pizza with its fake cheese topping and cardboard bottoms). It’s alright when it goes alright, a logistical Heath Robinson Affair, ready to topple as soon as someone runs out of leave. At least I haven’t got any marking to do, even if I have the report writing, the phone calls and the emails, so many emails on a continuous running stream throughout my working day.

And then there’s the appointments. Squeezed in between the school run and the supermarket delivery, I have to log in and use a password and it’s not even for me. I have to explain (again), cajole and question; is that blood test really necessary? Will it make any difference? Is there really no-one to coordinate it all? No paediatrician for a grown up boy? It’s me? Are you certain, are you sure?

And the meetings. The number of strangers touching our lives is growing daily and yet we can’t find anyone to spend the personal budget on. Economic migrants, we haven’t got a social network; we haven’t got time to form one. Even if we had, there’s no reason why anyone we knew would want the job. No-one wants an itty bitty job that pays peanuts, and I don’t know about you, but I can’t shift that sneaking feeling that there’s an element of motherblame that still hangs around us, whispering, poisoning.

Slowly, so slowly, ‘inclusive’, ‘inclusion’ has shifted its meaning. Slowly, so slowly, we depart, softly wrapped up and separated into a lonely little isolated world and I can’t help but wonder, as I sit in front of the fire in a haze of relief and slight bogglement that the weekend is finally here and tomorrow I can sleep beyond the alarm, who should be apologising to who.

Disabled Children are People

Oh dear, oh dear, oh dear, I’ve done it again. I’ve read something in the newspapers and it’s made me cross. No, it’s not the latest from the Brexit Express (although that is a close contender) and neither is it the latest skeleton to come tumbling out of Boris Johnson’s closet. Nope, you’ve guessed it. It’s the one thing that is pretty much guaranteed to have my fingers stomping all over the keyboard; the treatment of SEND in the press.

This time it’s the Times. Not a newspaper I frequent more than occasionally (my in-laws get it for the crossword – apparently – and I tend to give it a glance through when I’m there), today’s article is another good reason not to make a special effort to either get myself a subscription or go to the newsagent with my actual money.

Apparently, you see, pupils are losing out on £400 million of school funding because it’s being ‘diverted’, ‘siphoned off’, no less, to special needs. Parents are getting ‘golden tickets’ in the form of Education, Health and Care Pans and councils have had to ‘raid’ their mainstream schools budgets (to the tune of that £400 million) in order to pay for the ‘surge’ of pupils categorised as having special needs.

So let’s get a few things straight and see if we can’t redress the balance, just a little.

1. Disabled children are people.

Actually, I think that’s the only thing that needs to be said. I could go on at length about the contributions to school communities and society in general, of disabled young people or I could remind you of the world of statements that ended at 16 and how that was the time when many fell off a metaphorical cliff edge. 

I could rant about the rights of all children to an education and I could add several thousand words on the subject of segregation, hate crime and danger if that education doesn’t happen. I could take a trip down the school corridor and point out that the door mat isn’t a learning island for anyone and that disability can be seen on the outside or appear only on the inside. 

I could veer into policy and weigh up the pros and cons of ring fencing the SEND budget in the same way as the Pupil Premium (or whatever it is called now) and describe the damaging effects of the school accountability system, the inaccessible nature of exams and tests, the overblown curriculum, but I won’t.

I could point out the lower life expectancy of disabled people, and in particular learning disabled people, that has nothing to do with disability and everything to do with treating people as commodities, as if they are, somehow, a character in a book, less than human so I’ll say it again:

disabled children are people.

I expect I’ll have to keep on repeating that.