Category Archives: motherhood

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.

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Posts for World Down’s Syndrome Day 2018 #WDSD18

With the hashtag #wouldntchangeathing (see,  I can spell it right in a blog post) taking the internet by storm, I thought I’d put together a post for you with my favourite posts about life, and love, with Down’s syndrome in it. Sometimes I have managed to write something for the 21st March, sometimes not. They might not be the posts with the most hits, but they represent, for me, what I’ve been trying to articulate about life, love, education and Down’s syndrome. Some of them are old, some of them are newer. A fair few of them have an educational slant. Quite a few of them have nothing to do with having a baby, for the simple reason that I become very tired of the link between Down’s syndrome and termination. Life goes on; and it is good.

Enjoy – and I’d love to know which ones are your favourites.

In no particular order (and certainly not a top ten, because I couldn’t decide on just ten) they are:

I never thought it would be me

A cause for love

Down’s syndrome Awareness

Downer

Out of the Ordinary

Olympians 

The unknown mother

Hope for the Future

Giving up

The Down’s syndrome memo

In my own words : Sam tells us about the things that are important to him.

What not to say

And for TES : Children with Down’s syndrome are entitled to a mainstream edication – just like everyone else

Girls Just Wanna Have Fun

When I was about 19, I went out for a night of karaoke with friends at a local nightclub. Although I’ve done a lot of singing in public in my time, karaoke was new to me, but, ever the performer (I hesitate to write ‘show off’ – I really do try not to get too up myself), I chose a song from the catalogue and signed up to the list without a second thought (I’ve always been a bit overconfident on the singing side of things, comes from my early childhood experiences when I was constantly being called upon to Do The Singing bit in school shows, church and amateur dramatics). For my turn, I chose Cyndi Lauper’s ‘Girls Just Wanna Have Fun’ and, I remember, I sang it to much applause (afterwards, when I went to the loo, I was accosted by another young lady who, rather aggressively I thought, asked me if I was the one who had been singing earlier; when I rather nervously admitted it was me, she told me I had been fookin’ ace – I’m taking that as rapturous). I remembered the experience when I was out in the car earlier today and it came on the radio (an expedition into the cold and rain in search of Forgotten Items From the Supermarket). It made me smile.

My friends and I, when we were at College (we were 17 and we thought we were the bees knees) used to request this song regularly when we went out to discos (a regular occurrence); we’d jump on to the dance floor in our Doctor Martens and bellow the words to each other, bouncing with the joy of being young and brave and having the world at our feet. We’d sing the lines ‘Some guys take a beautiful girl/and hide her away from the rest of the world/ I wanna be the one to walk in the sun/ cos girls just wanna have fun’ and vow that we would never put up with the sort of nonsense from our chosen partners that would have us stuck in the house being subservient. We were feisty, and determined.

As I drove along the slick streets, brown with the slightly thickened ending to raindrops, I turned the volume up and sang along, happy to be diverted down memory lane for as long as it lasted (I had taken the precaution of writing myself an actual list before I set off from the house, I thought I would be safe), remembering the days when I was younger and thinner and much, much fuller of energy. The younger me isn’t so different to the older me I thought; I’m still determined never to be shut away, an adjunct or an add on to someone else. It’s just that back then, I thought it was personal. I thought it came down to the person you chose as your life partner.

Now, though, I know different. I can see that this shutting away, this turning of a woman into some sort of silent trophy, or idealised image of supportive womanhood, or motherhood, or whatever else it is that women are supposed to represent or do, is not so much, not in my life anyway, personal and private, as systemic.

R thought I was going on a bit, but when he found that he was the one who had to curtail his working day in order to meet the kids from school and damage his career prospects (and I don’t mean extras, school events such as assemblies or school shows or sports days or anything like that).  Not that schools are in any way the same as places of child care, but dropping everything at half-past two in order to make it to the school gates for three does kind of cut in to your day. And, when you add in the magnifying effect of caring for a disabled young person – right at the point when you’d think things would be getting easier in the school run department you find out that it is actually worse, what with the even shorter educating day at college and the difficulties in finding the sort of care support you actually need; not for S the wander round the shops with friends that I used to do, while I was waiting for the bus. Holding down a part-time job, or even working at all, becomes increasingly challenging the longer I am in this game, and I haven’t even begun to write about health or social care. I’m lucky to be able to work the way that I do; I don’t for one minute think that my working arrangements are the norm. Employers pay you to do a job, and if you aren’t there, because you have to share the caring load, they will look for someone else who can. Part-time leaders? I’ll believe it when I see it.

I don’t know about you, but today, as I consider the opportunities I might have had, the chances I’ve missed to make a wider contribution, to effect a bigger, direct change in my chosen field of education, Cyndi Lauper, and her bouncy, buoyant, rebellious song doesn’t really do it for me any more. Yes, the personal is political, but now, it’s more. It’s bigger than me and my choices. Now, today, I might have a reminiscent singalong in the car, and smile at my youthful innocence, but tonight, when I do the washing up, next week, when I sit on the train, hurtling though the early morning chill to London, now, when I sit here, editing this post and considering what it is I am trying, so clumsily, to say, I will be, I am, choosing a different song. In so many ways, I’ll be singing, ‘what about us?’

 

 

An Unreasonable Lack of Unbelief

I don’t know if you are familiar with the unwritten rule that there is Always One. There is always one child who is looking out of the window when they should be paying attention. There is always someone talking when there should be quiet. And there is always, always a vest, and you can guarantee that it will be a new one, left over from the first PE lesson of the year, and it will stay, in lonely state, unclaimed at the front of the class, even after parents’ evening has come and gone, until July when you finally consign it to Lost Property.

I have noticed that this rule operates amongst the adult population too. For instance, there is always one midwife who tells you, right at the wrong moment, to Buck Up (or words to that effect). And, and I don’t know if this is a Down’s syndrome thing or not, but there is always someone, in the early days it seemed to constantly be a speech therapist, now, it seems more likely to be someone on the internet, who seems to feel the need to disabuse you of your self-deception. Things are nowhere near as rosy as you keep on insisting on painting it, Nancy.

I do wonder if it has something to do with the ‘not getting your hopes up’ mentality. You know the one I mean; that if you don’t expect too much you won’t ever be disappointed. I get it, I really do. Most people mean to be kind, and they don’t want to see you struggling with the aftermath of a proper crushing in the hopes and dreams department (why they think it’s better for them to do the crushing, I have no idea, now I come to think about it). You can see it, every time someone justifies the termination of a pregnancy discovered to be carrying a little extra in the chromosome department. Cruel to be kind. Yeah, right.

You see, what these people, these prickers of the parental bubble, don’t understand is the very fine balancing act that happens, when you have a child like mine. What they don’t understand is that the grief you feel is not so much for the mythical child you didn’t have, but for the future expectations you thought you had.

Suddenly, instead of being on a journey of discovery, you are presented with a fait accompli, and more, one described in medical terms of risk and disaster. Terrifying, rather than exciting. A journey of fear and loss, not one of joy and discovery. It’s one of the things I resented most; the idea that my child’s future was written in stone, that because of his genetics, I was somehow not allowed to dream of his future. My child’s book was closed, not open.

Well, I don’t know about you, but I’m not very good at paying attention to such people. Tell me I can’t? I instantly want to prove you wrong. So, the odds may be stacked against an offer for an undergraduate place at Oxford? I don’t care. He may never speak? We’ll see about that.

That’s what it is, you know, to be a mother like me. It’s a wilful act of ignoring the things that don’t help, but instead trap, shut down and dispel hope. Like I used to say when debating nature or nurture and boys and girls, the truth of the matter doesn’t matter in the end, because the most important thing you need to hold on to is the faith, not in what is but what might be, if only we can catch, and hold, that unreasonable lack of unbelief.

 

An Attitude of Gratitude

When I was a young, wet behind the ears, first time mum, I dashed to the book shop, upon realising that my beloved first born was going to need a bit more sustenance than breast milk, and bought an infant-to-pre-school cook book. Filled with gorgeous photographs of little children happily tucking in to carrot sticks and hummus, wholemeal muffins and interesting looking purees, I there and then decided that my children would follow suit. Organic, wholemeal and home-made. Water, not juice. Sweeties? Never. I was determined.

I have a dear friend (who I haven’t seen for a while) with whom I used to cackle over these sort of decisions, years down the line, when we had realised that the best laid plans are great…until the children show you that they have developed a mind of their own and refuse to cooperate. These days, we are more knowledgeable in our food based decision making; it is fairly predictable, what they will or won’t eat (and it won’t be wholemeal and it won’t be hummus and it will have little to do with my will). Milk is preferred to water (and water only under extreme duress). One of us will not eat breakfast cereal. Another, nothing with visible onion or anything green. Yet another turns their nose up at pizza. Meal planning can be a complicated affair, if you don’t want to be cooking individual meals, that is.

I have discovered the ‘outside food’ factors that limit the menu. You can pretty well guarantee that they won’t eat whatever it is you have lovingly prepared for them if you’ve left it too long and they are too tired (this is especially pronounced in young children, I found). They go past the point of hunger and all they are capable of being is bad tempered and screechy, no matter how hungry they are, good for nothing except a bath and a bedtime story. Unexpected (and exciting) visitor turns up at tea time? Appetite gone. Birthday party? Same.

I have found that the amount that they will refuse to eat is directly inversely proportional to the amount of time and effort you have gone to in the cooking process too. I gave up cooking fish pie for them years ago. Curry, similar.

I also gave up feeling aggrieved at this ungrateful behaviour at around the same time I made this discovery. I want them to eat, after all, and they being young, had no idea how much effort I had gone to in putting their tea at the table. The hubs, however, not having gone through the fire of early motherhood, and escaping the vast majority of screaming tea-times through the virtue of being at work, feels differently. He feels that he should be thanked, not by a letter or a card, a round of applause (although he would probably like one, and one for doing the bins, too) and definitely not with a hug (especially if the end of the hugging arm is adorned with a fork), but by clean plates and a willing attitude towards the washing up. I remind him, when the heat of the moment has past that they are children, after all, they are still, despite their size, young, and they have no idea that the all-powerful adults might have had to make an effort rather than wave a magic wand (especially if they are not involved in the process). The provision of a meal at a regular time, for them, is something to be expected, their right, if you like.

Of course, I remind them, as we sit down at the table, that someone did work hard to put the food there, as I perform a kind of grace, involving thanks for the cook, which, as they grow, they join, with smiles and verbal good wishes (although not always with that thing that we really want – the eating with gusto and the smacking of lips, but, you know, it’s a journey). I take no offence at the lack because I know that they will pay it forward when their turn comes.

Christmas is coming and I, along with many (not all), parents will be ensuring that my children send a letter of thanks to relatives who live far away and who have gone to the trouble of sending them a gift, of thinking about it, buying it, wrapping it and standing in a post office queue to get it to us in time for the Big Day – none of which they were required or contractually obliged to do. But, when I think about it, it is not the letters that matter, although I know that recipients enjoy receiving them. An attitude of gratitude is about more than good manners because they, however nice on the surface, can hide an insincere heart. It is, instead, that understanding of something beyond the self, the growing realisation of someone else that I am looking for.

The giving of a gift and the sending and receiving of formal thanks at this time of year may seem a social obligation, but it’s not. With any luck both are freely given, no conditions attached.  They are acts, if you like, of love.