Tag Archives: Down’s Syndrome

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?’

 

 

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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.

 

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 things you don’t say

I’ve been a very busy girl lately (no change there, then, I hear you cry), much to the detriment of this blog and, no doubt, my family life, as much of my activity has been to do with work (a girl has to live, after all) rather than running around after the kids (something I fully intend to do this weekend, starting tomorrow). I’ve been busy, not at the computer, but out and about, in schools, training events and, yesterday, at the Academies Show at the Birmingham NEC.

I’ve been speaking about inclusion, and what it means on a personal and societal level, for children and the adults they will become. What I’ve said has, in the main, been well received.

You wouldn’t think it, after all, I am used to presenting things and talking before an audience, but, seeing as I tell my personal story, I’ve found it a nerve wracking experience, and yesterday was no exception. The last time I was in the NEC it was for a birthday visit to the Gadget Show; I felt disoriented and anxious and worried that I would take up too much time from the person following me. So I rushed.

Sometimes when I speak I don’t bother with many notes. I’ve thought about and internalised my stories so often that a picture prompt is all I need to get me going. Yesterday, though, was different. Mindful that not only was I representing myself, but Sam, and my employer, I prepared carefully. I planned my talk and wrote it down. I even timed it. A fact which I promptly forgot when faced with a real, live audience.

So I did what I have often done in the classroom; I chopped and changed, moved things around to suit the circumstance (or at least the situation as I perceived it) and, when I stepped from the stage, and looked down at my notes, I realised that, as in so much of my life, there was vast chunks of stuff that I didn’t say, and that I wished, as I drove home and cautiously negotiated the traffic in the darkening gloom, I had.

I wished that, when I talked about friendship, and the importance of making friends with the young people with whom you go to school, I’d told them that although the same set of children came to all of his parties, he didn’t go to theirs. 

I wish that I’d reminded them that the point of a mainstream education for a disabled boy like mine was not that he could be best friends with a woman older than his mum. 

I wish that I’d followed up with my assertion that those of us with disabled children have just as much right to be happy as anyone else – and that this meant living without the conflict with professionals that you are forced into when the state takes an interest in your family life. 

I wish I’d told them how hard it is to ask for help – and the difficulty of having to ask again, and again, and again, because someone’s policy is to save money and keeping quiet about what you are obliged to pay for is one of the ways you do that.

I wish I’d told them about the fear. Of the future. Of change. Of not knowing what is happening or what is going on. Of the difficulty in trusting someone else with your precious child because experience tells you that not everyone sees the world in the same way as you do, and how that makes you appear from the outside.

I wish I’d told them that I don’t care about the process, or even about the policy. That I just want to work to find a way forward for someone I love, and that I am sick to the back teeth of being told I am wrong, that I am doing all the things the wrong way or asking for the wrong things. That somehow, everything is actually my fault.

But these are all things I didn’t say. There are always things you don’t say.

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.