What I Learned at School

One of the things I’ve been struggling with lately is forming my thoughts into something coherent. I’ve been caught up in a vortex of fear and work; it’s not pleasant, I can tell you. Sometimes, everything feels OK and we all carry on much as we do every summer (it has helped that the weather has been so lovely), with the added advantage of having daddy around. Other times, like last week and this morning, I, and the kids, feel like we’ve hit a wall. We want back the things we enjoyed. A takeaway. A hug. A chat and a giggle that just happens and doesn’t have to be organised and filtered through a screen. Movement. Someone different to the same five faces.

Most of the time I can almost persuade myself nothing much has changed. Over the years I have become used to periods of isolation. I’ve lived most of my life away from my parents and sister (funnily enough I am seeing more of them now than I have in a while). Chicken pox, nits, fevers and the, shall we say, digestive nature of many childhood illnesses have been good training for weeks of being housebound. I gave up going to church at Christmas some years ago – and my health at that time of the year has improved dramatically as a result. So far, so same old, same old.

This strange time has highlighted some of the sadnesses that are easy to ignore when you are all busy, beetling about, doing all the things. My younger children are hanging on in there with the support of friends on Whatsapp and Discord, but S…he has a phone but noone has helped him put a friend’s number on it, and I can’t because I’m not there where his friends are. Like many disabled children and young people, he is doubly lonely, the barriers to friendship amplified by this lockdown, a sinister foreshadowing of his future if we aren’t careful.

And mortality. I mean, I’m not saying that I forgot I was mortal, but I kind of did. Giving birth to S was the last time I had a proper brush with death, and that was nearly twenty years ago. It’s easy to pretend we will go on forever and fail to plan for the fact that we won’t. My biggest fear is that the hubs and I will be carried off and A will be left with the responsibility for both his older brother AND his younger sister. It isn’t to be borne, it really isn’t.

I do wonder what the medicine of fear will do to us all. In the short term it is keeping us safe, but there are side effects. Will we be able to function in the workplace when we feel breathless with anxiety about being there? How will I reassure everyone else who leans on me if I can’t reassure myself? And the children. Mine are older, but they are still young. How will this caution we have drummed into them – and I know we have because S doesn’t know what to do when he sees a stranger – affect their friendships? Will they judge friends who took a different approach to theirs? Social media has been great – but the FOMO is still strong and maybe even stronger now. Will they be afraid?

I’m not one for wishes and I don’t believe in luck, but I wish it was the summer holidays. I wish I didn’t have to cut myself in two, ignore my precious loved ones, in order to work from home. I wish that we were already at that natural break. I wish the economy that we have created, the giant hamster wheel we all seem to be trapped on, hadn’t taken advantage of the second wave of feminism and ensured that a household of expense needed to be serviced by at least two people working – and pretending that their familial commitments were managed by someone else.

I don’t know how we are going to get back to school, to some sort of run of the mill, humdrum, ordinary existence (I’m avoiding the word normal), but what I do know is that we need a plan. And more, it needs to be simple, clear and created together. I learned that at (specialist) school.

Things must change

Sometimes I think this must be what it is like to have a comfortable retirement. Every day, I go out into the garden, potter, pull up a weed here or there, think about which plants are in the wrong place and can I move them; I gain pleasure out of discovering which survived a move last spring and are putting out their first, tentative shoots. Most days, I go for a walk with my daughter. Not too far and nothing too strenuous, just around the block or down the lane and across the field (we saw a deer the other day); we soak up the early spring sunshine and delight (well, I do, anyway) in the faint fuzz of green that is beginning to decorate the hedgerows, the freshness of the ploughed fields.  There is, despite my anxiety about the news, always the news, a positive to be found in my relative privilege; a home on the outskirts of town, a small garden, a daughter and two sons who don’t need me to supervise their every move.

If you care to look, there are plenty of good things. There is more time with distant family, my parents and my sister; it’s easy to be consumed by working life, to put off the phone calls and wait for news second hand. This crisis has prompted us to create family group chats, video calls and, when we at home have become tired of constant requests for bingo, they have stepped into the breach to help us out. And all those thousands of volunteers. Deliveries for the vulnerable, stepping up and into roles they wouldn’t usually do. Countless people making useful things, from re-purposed pillowslips, a drawstring conversion so frontline key workers don’t have to shake the laundry out, to masks and scrubs and 3D printed visors. Communities are reaching out, beyond the 2m distance. It seems that government is surprised that the people have acted to protect their loved ones. It gives you a lift when the anxiety fades.

It is always there, though, just under the surface. While I’m in the garden I can pretend, if I choose not to notice the clarity of the air, the silence punctuated by birdsong and the occasional wail of an emergency siren, that nothing much has changed. It’s the Easter holidays after all, and we’d be hanging out at home, not doing very much regardless of what was happening in the world. But everything is different. Check out ladies are putting their lives on the line every time they go to work. I feel like giving the bin men a round of applause. There is a strangeness about it all; the burgeoning spring, birds nesting and trees bursting into blossom, the results of two weeks of sunshine following an interminably wet winter are a strong contrast to the constant reports, the rising numbers of disease and death. We, the privileged inhabitants of 21st Century Western Europe are getting a taste of the knife-edge lives of our ancestors. It hasn’t taken long. The cracks in our communities have been sharply focused. It makes you think.

The other day I posted a Thread of Things. You can read it and the comments/additions here. It’s a brief list of ideas that I think would make our lives better, once the danger of this plague has passed and we can all breathe freely again. I was pleased with it and I told my dad (he doesn’t approve of video calls, so we had to make to with the phone – the house phone, no less). After we’d discussed the relative improvement of our respective gardens and considered whether it all might be getting a bit competitive, we talked about how many of my ideas are not so much a description of how things might be as of how things were.

 

After I’d written this, it occurred to me that this desire to go back to an era when people felt more ‘heard’ and more at the centre of policy-making that there might be something of Brexit about it, so I am re-publishing my thread here, with ideas in more of a logical order (as opposed to as they happened to pop out of my head) and I’d be interested in your thoughts.

  • Housing standards. Regulation on the size, occupancy and outdoor/green space for dwellings
  • Cost of living, in particular mortgage size. People shouldn’t have to have two people working flat out to pay the rent/mortgage.
  • Price of food. We have become gluttons. We can choose anything and have it any time. We have lost the specialness of foodstuffs and that needs to change. Supermarkets as the mode of distribution – we should probably think about that a bit more
  • Abattoirs. I know it’s not the most lovely of things, but there needs to be more, smaller ones so that animals are not transported so far.
  • A continuation of working from home for at least part of the week where firms can. This would have all sorts of improvements for everyone.
  • Working practices and contracts. Self employment should not have to happen because it’s cheaper for firms to have people be self-employed rather than employ people properly (see: builders and gym workers – I suspect there are more) – the same goes for zero hours contracts.
  • There needs to be a greater recognition of the responsibilities of private life in public work. We need greater capacity in our workplaces to ensure that people can have time away from work if they need it. We could start with public service jobs.
  • More bank holidays. I’d have at least one between September and December, and possibly increase half term to ten days in October on health grounds.
  • Local authorities. a. We need them and they are massively understaffed, particularly in the area of social care. We need people doing face to face things like meals on wheels and being home helps  b. Disability social care – for adults and for children. We cannot carry on like this.
  • Regulation of water and water supply. This needs to be done by a person not remotely – and we shouldn’t be relying on a single reservoir to serve whole portions of the country.
  • The role of competition in public service. Competition is not what brings about better public services. Public services are not businesses. Good supervision and accountability is what makes improvement.
  • I don’t really need to say anything about ownership of public utilities do I?
  • Education – to start with, a focus on wellbeing rather than exam success (although the two are not mutually exclusive). Wouldn’t it be great if we took the opportunity to look again at how we could make our system properly inclusive
  • I do think that capacity (lack of) is a major contributor to strain in education, health and social care work. We need more people doing the work and more admin staff to support.school term length (thanks to daughter for this one) 8 weeks is too long.
  • Terms should be no longer than 7 weeks max.
  • Do I need to say anything about change for the accountability system in education? Anyone want to say what they think it should look like?
  • Education – funding for higher education (you know what I think about that, right?) I’d wipe out remaining debt for students who had to pay, too.
  • A set of regulations about car use/emissions in towns and cities. Quality of air would help us all to live better lives
  • Air travel. We don’t need to be zipping around the globe like demented bees. One flight (there and back) should surely be enough. Any more and it comes with a serious price tag
  • A review of the role of charities, in particular where they are performing the functions of the state. We cannot rely on ‘good will’ for essentials.
  • The constitution. I’m not convinced on the need for a written constitution, but I do think we could have some constitutional reforms for better clarity and greater checks and balances. E.g. a redesign of the upper house with room for proportional representation.

 

Screech

OK. I’ve done my screeching. I’ve squawked at the telly, the children (the husband ran away to the garage), the colleagues, the twitter. The only person I haven’t screeched at is my mum (she has taken care not to ring me tonight). I’m all screeched out.

I’m confused. I’m fearful. I’m worried for myself, my husband, my kids and my wiser family. I’m worried about my team, my class, my school. I’m worried and I’m sad. Sad that we may be out of school for so long that I won’t be able to say goodbye to Y11 leavers, to help the new little ones find their feet with their first few visits. I’m worried about what will happen if we/they stay away. I fear what will happen if we stay together.

So that’s that. I’m worried about a whole load of variables that I can’t control, that we have people in charge of Things who inspire me with negative amounts of confidence.

Yesterday, I talked a bit with my team and I told them a story. I explained to them that I was no longer able to be in school. That my health, and that of my family was forcing my decision. That I was afraid – but that I was used to fear.

I told them about when Sam was born. I told them that at that time, the future looked bleak and frightening, full of heavy responsibilities that I didn’t want and was scared to take on. And then I told them that I had a choice, and that I made a choice.

I guess that’s what I am doing now. Making a choice.

Fear is a powerful foe. It dominated your thoughts and sends you in a spin, it makes you behave in ways that, well, I guess all those people who scrapped over toilet rolls are wondering why they did it (or they will one day anyway). It poisons today, even though the sun shone and the daffodils grew, the birds started making their nests in the trees, oblivious to the storm raging in the hearts of the human population.

There are still good things. There is love and laughter, friendship and community. There is bravery and resolution, team work and ingenuity. There is care in our community.

There will be rage, yes. I will no doubt find my fingers making way to this page to tell you all how cross I am, but tonight I am telling myself my story. Don’t let my fear of tomorrow poison my today.

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.