The Funnel

I was doing some sorting out the other day. We have been decorating the sitting room (NOT the lounge; lounges are for people who live in a constant state of 1970s and have things like dark green shag pile carpets and pine-orange furniture), and part of this process has been the temporary removal of the book case (Argos) to the garage and the serious reconsideration of every book that had been shoved onto it when we first moved in, over a year ago now, upon its return. Two sets appeared: those that made it back onto the shelf, and those that have been transported back into the garage, en route to the charity shop. It’s not been easy, I can tell you.

It’s not the books that you know you really didn’t like but are somehow worthy, or the ones you didn’t really like that are the problem, or the ones you know you will NEVER give away (dog-eared tomes, some without covers, testament to how much you have loved them) that cause the difficulty; it’s the ones I enjoyed, but that I know I will never read again. They are the ones I weigh in my hands, on the shelf and off, until I reluctantly make a decision.

Old work diaries fall into this category, bizarrely. I’m not sure why this is, they aren’t ever going to come in useful for something, after all. Not personal diaries, though. I have about four or five year’s worth of them, tucked away in the bottom drawer of my desk, religiously filled in until about the beginning of March, apart that is, from 1987. In 1986, I had discovered Yes Prime Minister, and that Christmas, along with a novelised volume of Sir Humphrey’s diaries, I got a Yes Prime Minister diary of my own. I enjoyed it hugely, and, true to form, attempted to keep it (up until March, and, when I was putting the books back on the shelf the other day, I found it and I read it.

I have to admit that up to the point of perusing my old diary, I had been indulging in a bit of parental guilt over the State of The Children and giving myself a good and proper hard time. In 1987, I was fifteen and in the Fifth Year, the same age, in fact, as A. The first year group to take the GCSE, I was supposed to be getting ready to take my exams. The record of my teenaged days (lie-ins, a lot of lie-ins, Eastenders and novels) was reassuring.  Like my children today, I hadn’t given The Future a second thought, and here I am, sitting on the sofa at the grand old age of forty-six and I seem to have turned out not so badly after all. It made me feel better.

I don’t know, though. I can’t help but worry. Part pf me guesses that this all-consuming, corrosive worry about your kids is part and parcel of parenting in England at the start of the 21^stCentury. The sands, somehow, seem to have shifted. It’s no longer acceptable to go along to the odd coffee morning while the kids jump on all the beds upstairs (and pull all the bedclothes off while they are at it) or send them out to play in the morning and only see them at meal times; today we must cart them round to baby gym and toddler singing, rugby/football/ballet tots, swim club, martial arts; the list goes on, it is never ending and gets worse as the children get older. The number of distractions, of things we must say ‘no’ to is exponentially increased. It doesn’t seem acceptable to muddle along, to be good enough; somehow life seems to be painted in extremes of success or failure.

But when I look back to MY education and MY mid-teens(even if I do it with the subjective distortion of memory) the pathway before me seemed much more open. If I got a good grade, it was up to me. If didn’t, I would get another go. If I made a mistake, it wasn’t the end of the world. I was the person those grades mattered to, the person who owned them. Not my parents, not my teachers; me. There were opportunities and choices for me, lots of them, or that’s what it felt like, anyway.

I guess that is my greatest fear. I look at my children, my learning disabled son and my typical younger ones, snapping at his heels and growing up fast. Their moment of opportunity and choice is fast approaching (before the straightjacket of adulting rears its ugly head). And yet. In an age of austerity, and what I seem to continually describe, to myself and others, as an ‘increasingly challenging policy backdrop’, what choice, if they don’t fit a certain kind of straight-line progress, standard-child mould, will they have?  Is the world really their oyster? Or have we, unwittingly, as a community of adults continually obsessed with our own performance, despite our constant prating on about social mobility and our love affair with the idea of meritocracy, created instead for them an educational funnel?

 

 

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Maternal Mental Health

Back in March, I came across an article that I thought was very sensible indeed. Seeing as I am more than a bit worried about global warming (I’ve moved on from nuclear disaster, although I lost a lot of sleep over it in my early teens, worrying, as my school was nine miles away from home, that the bomb would go up when I was there) and also about equal rights, and generally interested in matters of education, it made a lot of sense. Educate girls through to the end of the secondary years and all sorts of wonderful things happen that have a direct impact on, for instance, world health and population growth, and thus the preservation of the planet.

Apparently, my auntie Pauline, a very old and somewhat mythical lady by the time I came along, I have a vague memory of white hair drawn back into a neat bun, and dark, dusty corridors with the sort of carpets that didn’t meet the walls, used to say that if you educate a girl, you educate the family; that, while the effects on the individual are profound, the ripples of your positive actions are powerful and far-reaching. And, when I think about it, an education does more than give young (and older) women the knowledge that will enable them to understand, and control, their fertility, but is the means to the confidence to ask important questions of their sexual partners too. No longer do women of my generation have to go through what my great-great grandmother did, and bear thirteen children because she was unable to refuse a Friday night after a visit to the pub.

The thing is, though, that I think that it is more than education that matters in the lives of mothers. I remember, almost as if it were yesterday, a conversation I had with my mum when I was expecting S, my firstborn. I was OK with being pregnant (although I did cry the day I could no longer fit into my jeans, because I knew that, from that moment, nothing would ever be the same again), but every time I thought about giving birth it was if I was staring into a black hole of terror.

“You’ll be alright Nancy,” she said, in that practical way of women who have been through the whole messy business and come out the other side, “it’s not THAT bad.” It was strangely reassuring. If she could do it, so could I.

That said, the experience was, for me, traumatising; and I know I am not alone. When S was tiny, I joined the local library (I’d given up paid work for a while, so I didn’t have any money) and one of the books I read was an account of early motherhood that took on the difficulties, face first. The sleeplessness, the constant responsibility, post-partum pain and the trials and tribulations of feeding the baby, no matter how you do it. It’s a treadmill, all on top of the physical shock that is giving birth. Even when it goes well (and I’ve done that bit too), and everything is fine, there is nothing about the process that is easy. There is a sense of being ripped apart – and then having to get on with nursing a baby (and possibly one or two toddlers) before the ragged edges have even begun to knit together.

Put traumatic birth, and by that I mean anything from mass intervention to emotional shock and something wrong with the baby, from jaundice to chromosomes, defects requiring surgery or brain damage, in the same event and you have a recipe for disaster in terms of maternal mental health and wellbeing. And, like an education, when a mother is well supported, so is the rest of the family.

What annoys me is that we know this. We know that the mental health of mothers of disabled children is fragile. We know that when there is a disabled child, there is often a slow slide into personal isolation, marital breakdown and poverty. We know that the lives of mothers of disabled children can be dominated by conflict and struggle, with education, with health and social care – and yet what are we doing about it? The Children and Families’ Act?

There are real and concrete actions that maternity services could put into place in order to support new mothers, and thus the wider family. Greater support from midwives and health visitors, access to a counsellor – and not just one offer, but an open door, especially where health concerns over the baby mean that mama is a long way down the list of concerns. It shouldn’t get to crisis point before someone steps in. We need to stop pussyfooting round the edges with our educational solutions and go right back to the start.

I, it seems, was lucky.

And I hate writing that because I don’t believe in luck.

The two-way street

I have to admit to a secret weakness for those short videos that make their way round social media. I like the ones where you see how milk bottles are washed and refilled ( there is something equally mesmerising and taky back to the childhood yearsy about them), where kittens crawl over each other (amusing) and even the occasional feat of derring do (although I don’t like to see people hurting themselves). I’m always happy to share something along that has made me smile, and, occasionally, brought a tear to my eye.

Every so often, a video that I share turns out to be incredibly popular. Like this one, at 230 MILLION views, to date. https://www.youtube.com/watch?v=Biex1XR_mpo

Or this one, at nearly 10K. https://www.youtube.com/watch?v=wn8VBimrhOY

There is something about them that resonates, clearly.

Would I have shared them if they weren’t to do with Down’s syndrome? Maybe, maybe not, I don’t know. For me, these short videos hold an added resonance. I, too, have held my toddler and told him (and the world, or anyone else who happened to be there) that I loved him. I recognise the look in these mothers’ eyes, because my eyes have held the same. I have smiled through a tear, taken in a shaky breath at the sight of two brothers, one so tall, one smaller, older; and I have seen, in the corner of my eye, my own sons.

I know why they move me – but why do they move so many others? Why do they move people who have no close, family connection? I’ve thought about it a lot, on and off, and this is what I think.

I think it’s something to do with the challenge of the unexpected. There they are, big, brawny soldiers, being kind. Here are mothers of disabled children, enjoying their lives, having a giggle, being happy.

Because you see, the stats around Down’s are scary, not heartwarming. The vast majority of women in the UK who find out that they are carrying a baby with Trisomy 21 chose to terminate their pregnancy. The NHS is rolling out more and more accurate, earlier and earlier antenatal screening tests. The existence of these tests are welcomed. It’s scary and it’s sad, because these actions and reactions speak loudly about how Down’s syndrome is held in our society at large. A mistake. An aberration. A burden. Something we are better off without.

And I think that’s why these stories, because they are stories, work, it’s precisely why they are so moving. Because that love, that love that isn’t so much said as soaked through every action caught on screen, expressed between mother and child, adult brothers, and more, men who are, you know, Real Manly Men, is something that is, somehow, a surprise.

It is, I think, the biggest tragedy in all the discussion and thinking and acting around Down’s syndrome; that, somehow, you couldn’t love your disabled child or your disabled brother, that, somehow, the love that exists would be a one way street.

Capacity

When I was a little girl I got involved in stuff a lot. I wouldn’t say that I was a joiner-in particularly, but when I look back, and count up the activities I did as a young person, it comes to quite a lot, especially when you consider I grew up in a Devon valley ten miles away from anywhere. For a small village, there was a lot going on, from amateur dramatics (adults and children) to gymnastics. The only fly in the ointment (for me, anyway, other children had differently inclined parents) was that if it didn’t happen in the village, it wasn’t happening for me. Hence, any dreams I had of being an ballerina or ice dance champion were dashed.

I started gymnastics when I was six or seven. As it was not long after the end of my four month hospital stay and I was a bag of bones with a red-raw operation scar that went half way round my back (still does, but it’s not red-raw) my parents were, understandably, somewhat anxious about it. I was put in my sister’s group, and she took care of me (or, as I saw it, bossed me about and made me be her partner – she took her role seriously, I guess), and made sure I didn’t hurt myself or wear myself out. I kept going until I was about 12 or 13, my lack of strength preventing me from being much good, but not from enjoying myself thoroughly, even though I could never manage to land on my feet after a handspring and my walkovers went one way but not the other.

Am-drams were similarly long-standing. One of my earliest memories was a rehearsal in the back room of Mrs Hughes’ house (she had so many children, I was never quite sure who they were or how many). I had somehow found myself in the group that were somehow baddies. I burst into tears and had to be moved, even though they came good and won out in the end. Costumes always seemed to involve nylon tights (yuck) and backstage was a wonderful gloryhole of rooms stacked with trestle tables that must have been born before the war. My favourite role was ‘Punch’, where my friend Kay and I got to hit each other with pipe insulation. The worst was when I had to wear an itchy leotard that was supposed to be my friend Carla’s costume.

The clubs were always filled with the same people (we all had similar parents, apart from Sophie, who gave up gym for dancing). Amy came with me to gym and drama. Kay to drama and Sunday School. My mum used to run the Sunday school with Mrs Hughes (who ran the Junior Players) and Mrs Freshney (who ran the holiday club with Mrs Hughes andmy mum), which meant that I didn’t have much choice in going or not (my dad was the man who Washed the Car on Sunday mornings) (not that I minded, I hasten to point out, I was more than happy to go). She used to make the booklets by spreading the individual pages out all over the sitting room floor. Kay and I used to giggle together, and I remained fascinated by the Chinese-style wallpaper in the vicar’s toilet for years, that and the open cistern, for years.

Actually, now I come to think about it, the reason I got so involved was no doubt directly related to my parents. My dad was on the organising committee of the gym club AND the PTA (until he fell out with the headmaster over the spelling of ‘barbqueue’). Along with a go-getty set of parents who ran the sort of clubs they knew their children would enjoy, they provided for us a range of out of school activities that certainly kept us busy and enriched our lives at the same time. When it came to my turn, and my children started nursery and Sunday School and football and scouts, naturally, I thought that I would do the same.

Except, I didn’t. I volunteered for the committee of this, that and the other, and even went to a few meetings, took my turn with a few teas, but, somehow, I couldn’t keep it up. At first I thought it was the new baby thing. Having three young children saps the energy of the youngest and fittest of mothers, so I thought it might be that. Next, I thought it was the fundraising thing. I have mixed feelings about fund raising (and very firm views on cake sales), or meetings and endless circular discussions. But, somehow, other women with more children than me seemed to manage. Other women who were equally busy, or impatient with group decisions seemed to get along just fine. They ran the committee and baked and sewed, raising large amounts of money for a variety of projects as they went along, cheerfully giving of themselves to the community and I…couldn’t.

It took me a while to figure it out. It took me a while to discover things like ‘mental load’ and capacity and how this is different for everyone and how when there is disability in the family, everything is magnified.

So now, when I see something about inclusive church, or business start-ups for learning disabled people, or personal budgets or anything else that sounds like a great idea if only it happened near to where I live, I smile sadly to myself (or scowl, depending on which side of the smile you happen to be) and sigh and know that what the answer will be to any number of good ideas.

‘Here’s an email address.’

‘Here’s a website.’

‘You make it happen.’

And, like every other time before, I drift away, disappointed. Having a good idea is great and all, but unless you have other people around you who have the capacity to turn your idea into something real, unless you have someone around who can make it happen, that’s all it will ever be. Without capacity, it will only ever be a pipe dream.

Sharing the Load

One of the things I have been struggling with lately is the notion of myself as a carer. It’s very strange. I remember, when I was expecting my beloved first-born, the very idea of me being the parent, the mother to another person, was astonishing. When he first arrived, a tiny bundle with a home-made hat, safely contained within the hospital Tupperware, there was a suspended time when I looked at him (and to be fair, I repeated the experience a further two times) and wondered what he had to do with me, and what I was supposed to do – and supposed to feel.

At the time, it was one of the things that disturbed me; this idea that I should instantly ‘fall in love’ with my child, as if motherhood, and all it entails, was supposed to come easily, that it was somehow as natural as falling off a log. (‘Cos you know, there’s a lot of falling off logs that goes on in day-to-day life.)

When you think about it, there’s a whole lot of things that mothers are under societal pressure to somehow find a doddle, a pleasure even. Breast feeding. Home-made purees. Broken nights. The wiping of bottoms, noses and sick. Constant laundry. Tidying up after everyone else. The pressure is on to make you feel as if you should Enjoy Every Moment and if you don’t, then there must be something wrong with you. You’re not a Real Woman, or you’re a Bad Mother, you can’t cope or something.

And then, of course, there is the whole disability thing. If you dare to bring to birth a disabled child – and I don’t think that this is specific to Down’s syndrome, although, given the antenatal screening that takes place you really wouldn’t think so – then it’s as if the only acceptable response from you, as a mother, is to throw yourself down on the altar of motherhood, either as some sort of public advocate for disability rights or by negating any needs you might have of your own for a separate kind of life in deference to those of your child (remember the woman who was awarded her own degree, after attending so many lectures with her disabled son, in order to ensure that he actually got there, at her son’s graduation?).

The hardest thing for me, though, is not that we should enjoy this process but that, somehow, the expectation that we should do all of this on our own. We are already isolated, working hard, paying the ginormous mortgage, travelling to work, to and fro, in our little metal boxes. We have separated out work and home, spheres with edges that kiss, but only in the evenings. And it’s not just our personal lives. Apparently there is no “I” in team, but even the seemingly most collaborative, collegiate of professions (teaching, the one I know the most about it has to be said) are increasingly set in the ways of individual competition.

You know, this is where I think we have got it wrong. Bringing up a family, the next generation, no matter how we might construct it, or what our role in it, personal or professional, is not the sort of thing you can do on your own. You need your friends, your wider family, your colleagues, around you. You need the people who are supposed to be supporting you to join you, not to sit in judgement, or complain that you didn’t stick to the plan, or that you are somehow less or shamed because you actually admitted that you needed help.

We can’t do it on our own and that’s OK.