Tag Archives: Down’s Syndrome

The Bridge

I’ve been helping my daughter with her revision this week. Well, when I say helping, I mean that I have mostly been letting her get on with it, with occasional reminders to actually do some, rather than spending all her time reading and watching youtube or whatsapping her chums (with whom she is going shopping tomorrow). She has some more exams coming up next week and apparently she wants to do well (well enough not to throw herself under the bed in despair, anyway).

Today’s help mostly consisted of a chat over the dinner table about biology. She doesn’t like biology. I am not sure why. She says it’s not to do with the spelling; it seems more to do with her resentment over the study of the female reproductive system (why don’t we learn about boys bodies, why does it all have to be about girls and I don’t intend having children anyway ergh ergh) and the number of different hormones that have similar names but vastly dissimilar jobs. Funnily enough, she, and the nearly-19yo who hung around chatting after lunch, seemed to be quite interested in the whole reproductive thing – especially the bit about how although we are mammals and our bodies may be ready and wanting to reproduce, us humans do have some control over when and who with and we have done for considerable numbers of generations.

I mean, I guess there’s a limit to how honest you want to be with your own children about the reality of child-bearing and child-rearing. I mean, you don’t want them to feel guilty or anything, after all, their appearance in my life was a matter of choice for me, and, really, honestly, if those of us who have children told those who don’t the truth of the matter, I can’t see that anyone would have another baby ever again.  All that huffing and puffing and all those sleepless nights and you don’t even get a smile for the first six weeks; and that’s before we get to assisted conception, miscarriage, prematurity, things being not-quite-right with baby and a looooong way before we get to childhood illnesses and accidents and things that change the course of where you thought you were heading (not Italy). 

It’s a difficult balance to keep, is sharing this kind of knowledge. I was never one for reading the baby magazines; I had (still have actually, I don’t like moving books along) a Dorling Kindersley guide to having a baby (before and after) which I devoured in my late twenties in my quest to have all the knowledge. I’d bought a number of DK books to prop up my classroom, so I knew the brand, I liked the photos; I was obsessed with (scared of) the birth itself; anything else I glazed over. Sleepless nights, nappies, vomit, yes, yes, we all know about those, don’t we? I suppose it’s no surprise that when S turned up, extra chromosome in tow and I underwent a huge readjustment in everything, I felt a bit cheated. Why did nobody tell anyone about this stuff, I raged? Why was everything so glossy and clean and easy looking when motherhood and babies were anything but? Why was everyone bringing up the next formula 1 racing driver/olympic swimmer/champion or champions when we clearly weren’t? Why wasn’t anyone being honest? Was it all a big fat lie because otherwise none of us would ever take a reproductive chance?

Maybe it was, maybe it wasn’t, I don’t know. The leaflet I was given when S was born certainly pulled no punches. There was a whole array of things I was going to have to get used to – things I didn’t want to have to think about, things that frightened me. But here’s the thing. That was the day when I realised that these big, scary things like heart defects and language/communication problems, thyroids and funny teeth, they were all, in the end, things that didn’t matter (apart from the terrible haircuts and brown cardies – they will continue to matter because STANDARDS.) I remember the moment, as clear as if it was yesterday, the moment when I decided that I didn’t care. There he was, in his little Tupperware cot, hair fluffy and disappearing into his newborn Babygro (blue); whatever happened, whoever he turned out to be (so long as he wasn’t some sort of master criminal), I would still love him. Because this is the thing they DO tell you (and if they don’t tell you I will have Words). Eventually, you will love your child. Eventually, things will settle down, and all the things become bridges you will cross – or not – when – if – the time comes. And love, your love, will be the thing that carries you over. Don’t let anyone tell you anything different.

Happy Birthday Darling

The day I was 18 it was overcast. I’d like to say I remembered the day vividly, but I don’t. Snatches jump into my memory; cards and presents at the start of English, my tutor, Roger, smiling and rolling his eyes, a pizza lunch with my mum and my friend Liz. Alcohol was probably involved somewhere, but I really don’t recall. Right before my A levels, I was in a frenzy of excitement and anticipation. This week, my firstborn, my S, was 18 too. Equally frenzied, like me, he went out with friends, not interested in staying home.

I feel chuffed when I look at the young man he is become. When he was that tiny baby and we were so worried the fact that he would one day be 18 was inconceivable. Toddler, small boy, stroppy teen, stages he has passed through (OK, so he might still be in the stroppy teen phase), the inevitable passing of time, the fascinating transformation through the ages – none of them have prepared me for my amazement at this birthday. It feels strange to have an adult child.

It hasn’t been easy, getting him to this point, and neither do I think my job is over. (I am currently huffing and puffing at the idea that I will have to apply to the courts for permission to assist my own child, but that is a story for another day.) There is plenty to be getting on with, but in some ways I think I can cautiously congratulate myself on a job well done.

This is not to say that it has been easy. Much of parenting, and you can multiply this for any sort of disability parenting I reckon, is hard work, from the almost mindless drudgery of wiping noses and arses to the withstanding of tears at bedtime and the constant turning things off. The ‘no’ word can become the hardest word, and sometimes it feels as if you, the parent, the adult, must have nerves of steel and a heart of stone.

To be honest, the disability thing doesn’t help. As a little one, S was the supreme example of cuddliness. His low muscle tone and a winning personality made him irresistible to many. His eyelashes have never had a problem working, and neither has his smile. Small in stature, especially when he was young, it was easy to kid yourself that, somehow, he would defy time and stay a child forever.

Like motherhood, there is an aspect of disability that is played out in public and Other People, every one of them with a different understanding of your child and most of them with the best of intentions, get involved (lots of them professionally). If you’re not careful, before you know where you are, your hard work is undermined by an ugly combination of opinion and pity.

But here’s the thing. Heartstrings are all very well but in the end there is a job to be done. In the end there is a challenge to be laid down and lived up to. That tiny baby, that little boy, he didn’t stay that way. He grew and grew and I am grateful for all the adults who did not give in, for all the grown ups who gently but firmly said, ‘no’ and, ‘hands to yourself’ and, when he said, ‘I can’t’ replied, ‘you can.’

Count Your Blessings

I’ve made it. We’ve made it. We’ve made it to the End of Term, we’ve dragged ourselves out of bed and into work and school before the sun was properly awake and returned home, picked our way through the fairy-lit dark, long after it had gone to bed for what feels like weeks. Everything about us was increasingly reluctant the further we advanced into December and the closer we got to the End Date and finally it is here. The children, exhausted by the effort of an eight-week term, have taken themselves off to bed early.

In a short few weeks, I don’t suppose I should refer to them as children any more, here or anywhere else. Next month, S will be 18, technically a fully-fledged man. L will enter her teens.  I will be one year closer to fifty (as will everyone else under fifty, I guess) and I am considerably greyer now than I was this time last year. Time, that constantly stretching, elastic beast, for all the eternal sense of the first night of the holidays, is speeding up.

When people ask me about my children, they no longer comment that I must have my hands full. I guess it must be obvious after all these years, but now, they are far more likely to give the knowing chuckle reserved for Mother of Teens than the rueful smile of Tired with Toddlers.

But here’s the thing. My house isn’t like other houses. My tribe of teens is led by someone different. I’ve noticed it before, when other people’s children came to play, but now I see it strongly reflected in my own. Here, it’s OK to be seventeen and still, somehow, see Father Christmas as a statement of fact, not one of wishful fantasy. It’s fine to want a ‘boy band’ haircut and unselfconsciously take a trip down memory lane with Rosie and Jim. Here, the presence of a big brother with Down’s syndrome allows you to be young, to be who you are, a mixture of heartbreaking innocence and slow awakening, to take your time in growing up.

When I explain that my son has Down’s syndrome to strangers or to new friends, so often the response is, if not sadness, then sympathy. Too often, we are so busy counting the deficits that we neglect to count the blessings.

Happy Christmas.

The One Way System

I’ve been reflecting recently on our decision to send S to a special school. At the time, it was a no brainer. The moment we walked in and the headteacher said to us, “of course, you do understand that he won’t have his own 1-1 TA,” we knew we had come to the right place. S, of course, preferred the mainstream school next door, where the room he had explored had computers that came up out of the desks. He was, I am sure, convinced that every day there would be a day of games and play, while everyone around him smiled and told him how cute he was (he was, still is, if I may say so myself).

We had been thinking about which school he should attend for some time; when I say ‘breaking my heart over it’ I don’t think it would be an exaggeration. In the world of Down’s syndrome parenting, whether or not your child goes to a specialist school or a mainstream one is a major point of debate. After a diagnosis experience still common to many, I believe, one of sad, solemn faces, apologies and the vague, unspoken inference that the baby you hold in your arms doesn’t measure up, is some sort of alternative, inferior creature, the inclusion of disabled children in mainstream institutions such as schools goes a long way to healing this wound. What would sending our son to a special school say about how we saw him? Would it mean that we were giving up? That he, and we, were failures?

And, like all parents, we worried about who his friends would be. In a mainstream setting, my experience as a teacher rang warning bells. Would he spend his school days swilling around in bottom sets, with all that that entails? Or out in the corridor, present but isolated? Would he be able to spend time with the children he would learn the best habits from – or would he be forever out of their way, removed from them by either the presence of a permanent TA or the effects of setting? If he went down the special school route, what would he be learning from the other children there? Shouldn’t he be with typical kids and learning typical things from them? It was a spiral of indecision and I’m glad that one visit settled the matter. We walked in, had a look around and all our doubts and worries fell away. He would be OK, and that school would do a good job.

I guess the thing that I am stumbling towards is the thing that I, as the mother of a disabled child, forgot, and the thing that people who do not have disabled children often mention (and which I, up until recently, have dismissed out of hand as patronising); that spending time with disabled people, or in this case, disabled children, is good for us, that we learn things, all sorts of things, by doing so.

I had always seen this in terms of the typical population, and underneath my skin-deep agreement there was always the resentment; that my son isn’t here as an object lesson in learning to be patient (or something) for other people. That he isn’t an inspiration lesson and that he exists, just as himself, and that is exactly how it should be.

But.

I forgot something, and I forgot something important.

I forgot that, as much as he could learn from typical people, he could learn from disabled people too. He could learn to accept his own difference, by accepting it in others; he could learn to transcend that strange kind of narcissism that assails a person who has a lot of attention, all fixed on them, you know, the appointments, the meetings, the endless, endless questions about what he wants and how he likes to be helped. He could learn to be the one who helps, and be empowered by doing so. I forgot that all the benefits of being educated with disabled young people were true for him too – a disabled young person. I forgot that it wasn’t one way.

It’s a good thing education’s a long game, or I’d be jiggered, frankly.

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.