Tag Archives: Family

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.

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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.

 

The talking watch

My dad loves to give gifts. When he was a boy, family tradition says that one of his uncles (he had many uncles, but no cousins) used to have everyone over for Christmas dinner and enjoy himself, as host, by, every so often, appearing with another gift, much to everyone’s delight (in particular, my dad). Today, he likes to carry on the tradition, not at Christmas, but when he visits, and my children greet his appearance with great joy and anticipation, as they swarm around him like cats, winding their bodies around his legs (or at least they did when they were younger), waiting for the inevitable to appear out of one of his many pockets (my dad is a man of many pockets, which is or is not an advantage, depending on whether you are looking for your glasses or your keys or not).

Having a family of grandsons has clearly been a source of purchasing pleasure for him, the father of two daughters. In some ways he has revisited his youth, with candle steam boats that float in the bath, microscopes (complete with accidental sample of grandfatherly blood) and all manner of funny games and build-it kits heavy with meaning for him (and none at all for me, except that I just know he is itching to buy my daughter a lurid make-up set so that h he can declare in sonorous tones laced with laughter, ‘let their make-up be like clowns’ – I began experimenting with make-up around 1985; I’ll let you draw your own conclusions).

Recently though, his gift buying has hit new heights (or depths, depending on your perspective); last Christmas, he bought Sam a talking watch. Now, Sam has been hedged about by timepieces for some time. I bought him a digital watch one year, a great big chunky orange one which he wore with great pride until he lost it (it turned up again when I swapped handbags). There is a teaching clock on his bedroom wall, and for many years, day and night were marked by a light up bunny that slept at night and trotted off into the big, wide world, knapsack on its back to the tune of early morning birdsong and a cock-a-doodle-do as soon as it was day. For all his difficulties in learning, Sam is getting along well with telling the time.

He doesn’t have an obsession with punctuality. Unlike his father, his default setting is generally later, rather than early. If it were up to him, I’m sure he would be perfectly happy listening to his internal rhythms and following them, note by note. No, Sam’s familiarity with the mechanical underpinnings of the daily timetable spring from our efforts to effect change. Sam is, you see, an early riser and we are, as I am sure you understand, heartily sick of being woken up.

It’s pointless trying to change Sam. He wakes up with the sun and who can blame him? During the summer months (I never thought I’d be glad of the dark mornings), with an Easterly facing bedroom, the sun gets up – and so does he.

I’m not sure that the bunny clock ever really worked (despite my jabbing finger and hissed instruction to OBEY THE BUNNY). Asking him nicely to keep the noise down and let the rest of us sleep works up the point when he decides that he is bored, all on his lonesome, and it’s time he had some company, or some breakfast. Sam is, for his sins, a single-minded person with, understandably in the young, a personalised set of priorities.

But the talking watch. This has been a genius gift. After all those years, Sam knows that 7am is the time for getting up, even though he chooses to ignore it and either get up and crash about or stay in bed and crash about until the rest of us, red-eyed and gritty-tempered are forced up. You see, there is no arguing with the watch. It’s time is set remotely, radio controlled from Far Away, and it always tells the truth; it never changes its mind, or its tune. We finally, after all these years, have found the thing that has changed the game.

Because it’s true, you know, that you can’t change the person. Sam is not a mistake that needs to be fixed. He is not someone who can be forced to fit in, no matter how much we might want him to just do as he is told. Bawling at him might provide a temporary respite, but it never works long term. It’s never easy, figuring out what it is that needs to change – and even if you do, it might not be possible; after all, we live in a family and we have two other, younger children. Like teachers in a classroom, needs must be balanced, weighed up, and the best course measured.

Finding the thing that he understands, making subtle changes to the things that surround him, removing barriers, works.  Because it is then, and only then, that he is able to make the change, for himself.

Teaching: a socially mobile career?

Or: winding the web

I don’t know if you know, but I moved house about three months ago (I am trying not to go on about it too much). Due to the demands of a punishing commute on the part of the hubs, we have uprooted ourselves from the town that was our home for almost seventeen years and plonked ourselves thirty miles away and into the next county. It has not been easy.

As well as leaving behind family and friends, and going to a place where we know no-one (or I don’t, so that effectively adds up to the same thing), we have remortgaged and found ourselves in the unenviable position of living in a smaller, more expensive house. We have had to chuck out a whole load of stuff (one of the side effects of living in a big old lady of a house is that there is no need to throw anything away, ever), buy a whole load of new, smaller stuff, and committed ourselves to paying off such a large debt that we will never be able to help out our rapidly growing children, should they decide to do what we did and take up the offer of a higher education.

On the face of it, R and I could be the poster children of social mobility. Born out of the Second World War, our parents were all the first in their families to go to college. Most of them, from working class roots, made it up the ladder to teaching positions, home ownership and a different kind of life altogether to the one that their own parents experienced. My parents moved away too, adding a geographical distance to the mix.

As a good friend of mine explained to me, on her return from a three year stint in the States, they had the opportunity to reinvent themselves, to become persons unfettered by other people’s expectations of their backgrounds, wiping away accents and enjoying the opportunity to be a new self. If you don’t have roots, if there aren’t people around who remember the day you were born, your awkward teenage years and that terrible cough you had the Christmas you were the narrator of the school play, it’s easy.

But here’s the thing. Roots, community, family, friendship; these things are important. Without them, we are a little lost unit, making our way in an uncertain, lonely fashion. Without the patriarchal model, where one person goes out to work and the other stays at home to run the kids about to their various bits and pieces, to spend the time not only running the household, but weaving the social web, the one that stands in for you when your family cannot, it’s, truth be told, a struggle. Politicians and the like, who like to talk about social mobility do so only in economic terms, as if ‘lifting yourself out of poverty’ is the only thing that matters.

Maybe that’s why so many people from working class backgrounds, when they graduate, turn to teaching. You don’t have to rip your family apart in order to get on. If you’re lucky you can enjoy the long holidays and the artificial sense of gentility they bring, so long as you don’t rub it in the noses of your wider family (in which case, it probably is better to move away, in an absence making the heart grow fonder kind of sense). You can tell children that if they work hard and they pass all their exams then they too will reap the rewards, based on merit, because that’s what happened to them.

Until, that is, you move away, and you become a creature of suspicion, even in teaching circles; the person with no connections, starting all over again, proving yourself, all over again, winding the web, all over again.