Tag Archives: Down’s Syndrome

100% Literate

All children reading by age 6.

Apart from those who haven’t got the hang of speech sounds properly.

Oh, and those with a literacy difficulty (as yet, undiagnosed, because they are only 6).

And those with a diagnosed SEN.

And disabled children.*

Obviously, we don’t mean those children. THOSE children will never be literate.

Or will they?

 

Maybe we could stick with the 100% and look again at what we mean by literacy.

 

*children with Down’s syndrome were deemed ‘educable’ in 1971. It is only since 1981 that they have been able to attend mainstream schools.

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Elastic

This week has been one of journeys, of visits, to the past, and glimpses of the future. Sam, at 16, is leaving the care of paediatricians, moving towards adult health services, and together, we are making our way between appointments, visiting the places and people of our shared past.

There are changes in us all. Instead of a rough collection of post-war prefabricated huts there is a brand, spanking new Children’s Centre, but, funnily enough, many of the faces are familiar; over the years, the medical staff have rescued one or other of my children from the jaws of whichever illness was threatening to pull them under more than once or twice. One of the reasons, after our housemove, we have opted to stay on at the same trust is the continuity. Many of the health professionals who see Sam for routine check-ups have known him, and me, since he was born.

This week, after the hearing aid debacle (I have checked everywhere, in and out of pockets and bags, the washing machine and the reception desk at college), it was the turn of the heart scan. It’s been on the horizon since the summer; twice now we have had to postpone, due to holiday or work commitments. The date has been on the calendar for at least a month, a final check, just to be sure.

Sam’s heart hasn’t had such close attention since he was three days old. That day, bleak, and grey, the tail end of January, was wet. Instead of sunshine, the crispness of a golden autumn, it was slick. Brown and dirty; the dampness in the air, the remains of tears, the shaky sweat brought on by the hospital and a darkened room cooling in the cold air. Then, he was a tiny baby, he hadn’t been home, hadn’t had his first bath; now he is on the cusp of manhood. This was the morning when together, we looked in the bathroom mirror as he shaved the beard that is slowly roughening his baby face.

It was supposed to be no big deal. Like I said, it’s been on the calendar for months. Over the years, we have got used to dividing our time, not exactly taking turns, but attending the appointments, of which there are many, separately. Most of them are mundane. Most of them require only the polite boredom of waiting your turn, the oft repeated recitation of a medical history, the everso slightly defensive spike, the sensitivity to unsaid, but assumed stereotypes. I was unprepared for the wash of emotion, the tidal return of a day long gone, when I feared, when I truly feared what our future might be.

There was no reason to fear. There was no sign of breathlessness, no dusky tinge to his skin. As he has grown, he has become a vision of good health. I knew that this scan was a formality, a chance for a doctor to see the baby grown, to shake his, and my hand and say goodbye. But still. There are moments when reason does not feel strong. There are times when the echo of the heart is an unstoppable force. It overwhelms, and it catches you out.

We left with a smile. A wry admission that we hope never to meet again was our goodbye. We move on. We may carry the echo of that dark January day, but today there is sunshine. Today, there is tomorrow.

via Daily Prompt: Elastic

Sunday Best

I had the oddest experience the other day. As you (probably don’t) know, I moved house recently and, as the nights are drawing in and I have reached the conclusion of my hemming and hawing, I thought it was about time I sorted out some sitting room (the hubs calls it the lounge, which I tease him by declaring that that name is horribly bourgeois) curtains. I found a nearby branch of a fabric place I have used before (I’m not what you might call skilled in the matter of sewing), and off I trotted, measurements in hand – and they refused to sell me any. Not in so many words, you understand, we ran out of time and I had to make a dash for it (slave to the school-and-college run that I am), but still. I got the distinct impression that something was…off.

I thought about it afterwards as I scratched my head and googled around to see if there was anywhere else I could get hold of something to keep the darkness at bay, and I came to a depressing conclusion. I think it was something to do with me. Not that I barged in to the shop and demanded to be served, not that sort of thing (people who do that never seem to have any trouble getting what they want, after all), but that I didn’t look like someone who could afford to spend the kind of money that the curtains are going to cost (don’t worry, I have saved up – I’ve bought curtains before, I know they are costly things). Seeing as I had been cleaning the house (the other treadmill of my life), and the fact that it was raining, I had not considered dressing up a necessity – rather, I was considerably dressed down. Outward appearances did not tell the truth of the matter.

I’ve come a cropper in this way before, you see. I went through a phase of dressing up for church, when the kids were little. In an unconscious echo of my teenage years, when I dressed up (or down, depending on which way you looked at it) for the evening service, it was my one opportunity of the week to wear something swish, after a week of anonymous dressing in the ubiquitous uniform of early motherhood.  I’d even do my hair (well, sometimes) and put on makeup. I knew I wasn’t presenting the right kind of image after I had one very difficult conversation with someone or other (I had done something wrong, spoken the wrong way or asked for the wrong thing – in the wrong way) and I had to point out that I, as the mother of a disabled child, was the very person that, perhaps, they were seeking to reach.

Sometimes I think it was the same when  Sam was at primary school too (although we never had the same full and frank exchange of views about it). I didn’t fit the mould of the person who might need a hand, every now and again. Some people get all the help in the world, the cups of tea, the signposting to official people who you can ask for help, some people get the sickly sweet patronage of the welfare state and others, those hampered by their membership of privilege, instead of helped, are pathologised. Demanding. Fussy. Pushy. Difficult. Asking in the wrong way and at the wrong time, not following the plan, or being the right kind of mother.

I don’t know, maybe I should just suck it up. Maybe I should dress up for shopping and dress down for church, just so people know I mean business. Maybe I should cry in school playgrounds, not save my tears for the washing up or when I’m cutting onions; maybe I should publicly broadcast a somehow acceptable disability story so that everyone can feel sorry for me, and good about themselves for helping. Maybe I should hide who I really am, don the cloak of hypocrisy so that they don’t get defensive and I get…I don’t know what I get, a relief from disappointment, perhaps.

I’ll go back and get my curtains. I’ll screw up my courage, flick my hair over my shoulder, put on my sunglasses (even if it’s raining) and remind myself that I don’t have to care what other people think, or appear to think of me, that it’s the results (in this case, curtains) that matter. One day, I’ll transfer the lesson and I’ll stop being phased by the criticism of wrongness and then we’ll see.

That September Feeling

Today was the first day I noticed the morning mist. It hangs, golden, over stubbled fields heavy with dew, slowly disappearing, soaked up by the still-warm, late-summer sunshine of September. We are entering the final third of the last act of summer, and I am surprised that it has taken this long. It’s usually the first week back, the shock of the first INSET morning after the long rest that has me noticing it, curled around the valley floor, but not this year.

This year, September has been, not the delicious irony of glorious settled Indian Summer, but wet. Muddy, wet and cold and an unaccustomed early start to the wearing of long trousers. Instead of sunglasses, I have shivered, donned a raincoat and sadly abandoned my summer shoes. They sit, with the t-shirt I wore only once, on the floor of my bedroom, ever hopeful that warmth will return before they must be put away, hibernating in a dusty box beneath the bed.

It’s used to be that I was invigorated by the September Snap; that first breath of chill as you step out of the front door on the way to school. After a long, boring summer, with nothing to do but read, or hang out with the young people who just happened to be there (as opposed to young people who were actually friends), or, even, reluctantly perform the homework tasks set by teachers who would no doubt forget they ever asked, I was ready for the change, the challenge of a new school year. Now, though, now I am not.

For six long weeks I have them. For six long weeks, my children are mine. Our lives, for a time relive, they ring with the echo of when they were first born, of the time before timetables and bells and detentions and punishments for lateness. For six long weeks (bar the times when I must work, the bills needs paying, after all) we please ourselves. 

You don’t realise the freedom, the release from other people’s expectations, other people’s agendas, until it ends, until the moment when the hamster wheel of packed lunches and school runs, checks for homework and the paying for trips and clubs and music lessons takes up its relentless motion. You thought you were in control – of your own life, of the way your children are brought up – until that moment, and you see again the grey hairs and the burgeoning lines upon your forehead; you feel the pinch of other people’s expectations, etched upon your skin.

Your fingers itch to reach the keyboard, to fill in the blank pages of the home-school diary, to tell the people who don’t know your children all the things, all of the things, to reassure yourself that they know the mountain you are climbing, that they will help, not hinder your progress.

That first breath of September, no longer the chill that rosed the cheeks and quickened the step, must now be held, until you learn to trust.

Afraid

I was chatting the other day,  with some mothers of children with Down’s syndrome; what was it about Down’s syndrome, we were asked, that everyone, the world and his wife, finds so scary?  It’s a question that knocked on the door of my consciousness long before it was posed.

You can find a post on the fear of disability, and Down’s syndrome here.

It doesn’t happen straight away, but once your child is no longer a baby, or a cute toddler, a little one in a too big school uniform, once your boy starts to turn into a man, people’s attitudes change.  The miasma of fear hangs around them.  A fear of male sexuality.  A discomfort with a feminised masculinity; a man who will always need to be helped.  A not-quite someone.

You can find a post about Down’s syndrome and manhood here.

And I have written about the judgement on women, on mothers who dare to have a disabled child. Framed as choice, the discourse has more than a whiff of judgement about it, there is a you made your bed now you lie in it stench.  I have read about, thought about and written about the blame that is hung around the neck of mothers of disabled children.  Too needy. Hysterical. In denial. Awkward. Liars, even.

You can read a post about the inherent sexism present in our schools here.

Mothers of disabled children are set about with rules. In a digital age, we are told we share too much. We place our children in danger; we share stories that are not ours to tell, as if the stories of women, of mothers, are somehow less important, less deserving of a hearing.  In an economic time of debt and austerity, we must both pay the bills and stay at home. We have no need of ambition; our fate is to lay ourselves down at the feet of our children, the price we must pay for bringing to birth a disabled baby.

Today, for work (although I’d have read it out of interest), I read a report into the mental health and wellbeing of children with SEND (that’s special educational needs and disabilities) in schools, and, to be honest, I wasn’t shocked.  Depressed and angered, yes. Shocked, no.  You can read it here.

You see, we know that SEND is intimately connected with poverty and economic and social disadvantage.

We know that having a disabled child puts a strain on adult relationships and many such children grow up with an absent father.

We know that teenage girls are deeply unhappy with the world around them and their place in it, and that this is especially pronounced in girls who don’t, or who feel they don’t fit in.

We know that disabled adults and children face greater levels of bullying than any other group – and disabled girls even more so.

The report paints a picture of a toxic cocktail of powerlessness centred on the experience of women and girls; of individuals caught in the feminised state of disability.  No doubt there will be calls for change, for interventions or plans, for government backed initiatives, citing the well known unhappiness of the UK’s children in justification.  We have a big problem, requiring a big solution.

Except we don’t, not really.  To be kind costs nothing.  To be alert to bullying and to help our children and put a stop to the behaviour that has blighted the lives of so many costs little; some thought, some understanding, maybe a bit of training and a heap of commitment.  Challenging workplaces and demanding societal support for families, so that caring is shared, not carried by one person, might take a bit more, but still.

Without that commitment to change, when you look at it, when you really look at it, who wouldn’t be afraid?