Tag Archives: Family

Selection and Choice

One of the things you get used to, when one of your children has Down’s syndrome, is being asked a lot of questions.  They can be anything from the sort that come from officials and questionnaires about his ‘needs’ (like, how am I supposed to know when it is a new situation and I’m not there?) to the most common of all, accompanied by the sympathetic head-tilt and sing-song intonation of, ‘did you know?’

The did you know question became so ubiquitous when Sam was younger, a soundbite comment on the public nature of motherhood, that I became sorely tempted, in the faintly hectic way of the sleep deprived, to answer through dramatically bared teeth, ‘No, I ordered him from the baby shop especially because I fancied a more complicated and difficult life, thanks for asking.’  I never did, but my friend Meg and I used to laugh about it.  We’d decided that laughing at the world and its judgements and opinions was a better option than the alternative, which was to drown in a sea of self-blame and fear for the future. So laugh we did, imagining all the shocked faces at our reply.

The thing that always gets to me though, the poisoned dart hidden deep within that question, is the underlying assumption of choice.  We like to think, in our 21st Century Western way, that we have a lot of choice, as if we could indeed go into a shop and point at the baby we wanted, the one that satisfied our list of demands, as easily as that.  But, of course, there is no such shop, and no such easy choice. The best we can do is offer some sort of selected screening.  We set the criteria, genetic trisomies, duplications, serious diseases and disablements, and we screen; a blood test, quick and easy, but hardly painless.

Again and again I find myself questioned, this time upon my position (because, it seems to question why a woman might choose to act as she does, to make a smothered request for the kind of surrounding circumstances that enable women to make an informed choice, is not the sort of question I should be asking) and I think it comes down to one idea, one fundamental notion; to serve.

Which brings me to my point about selection.  In edu-land this year there has been a lot of handwringing and wailing (these are technical terms, you know) about the possibility of a re-introduction of grammar schools.  ‘We are giving parents more choice!’ declared the politicians.  ‘You can’t choose a school that works on the basis of selection!’ replied the critics.  The argument went back and forth for the best part of the last year, and, when it turned out that after the General Election the government would not be able to carry out its plans, there was a collective sigh of relief.

However, and here is the thing, selection, whether we like it or not, is already present in our education system (and I’m not talking about those areas of the country where we have grammar schools surviving).  It’s not necessarily an explicit thing, not by any means, but it is there.  You only have to step through the school door with your disabled child and you run slap-bang into it. ‘You have to think about what They take away from the others’, ‘They do special needs much better than we do’, ‘We can’t meet his needs because of *insert safeguarding/stairs/toilets/staff/whatever reason here’; the comments fall on your ears and enter your heart thick and fast.  Putting it simply, when schools set conditions on the kind of children – or the kind of parents, even – they welcome, formally or informally, selection is in action, just as when you set criteria on what kind of baby is an acceptable one to join your family.

Some schools are better at hiding it than others.  Some schools are honest and up front.  Whatever it is, it means that while we might say that on the surface that we have an inclusive education system, in practice I am not so sure.To me, there is an aspect of taking life as it comes versus the desire to control.  Our humanity ensures that life is not some sort of perfect set of events; there are frailty, mistakes, unhappiness and joy along the way.

There are great schools around the country whose head teachers subscribe to the premise that the local school serves the local community, who take life as it comes (we sent our children to such a school), but I am tired of the pretense that this somehow means that everyone works to the same high standards.  I am tired of the educational rejection, formal or informal, through the setting of selection criteria dressed up in the language of choice, of disabled kids with imperfect parents and fallible families. I am tired of the way that great inclusive schools act as magnets in their area, because families know that at least there, they will be welcomed; of the way that it is not acceptable for bakers shops or hotels to choose their customers, but somehow OK  for schools.

It makes me wonder, when all is said and done, just who we are serving.


Alien Nation

It has got to that time of year when I start becoming aware that there are an awful lot of references to the summer on the telly. Every time there is a commercial break there is some sort of temptation to book a sun-sea-and-sand-all-expenses-paid extravaganza. Families jump in and out of swimming pools/turquoise oceans/treehouses, celebrities get marooned on desert islands (with a camera crew).  Robson Green was the latest recruit, I saw.

I have to admit I am very fond of RG as a documentary presenter. There is something about his self-deprecating enthusiasm that makes me smile and emit the odd surprised snort of laughter, whether he is catching a fish that was THIS BIG (I have no interest in fishing) or finding himself inelegantly stuck half way up a palm tree in search of a coconut. He has the ability to make the odd comment that I find myself filing away for the future (‘my dad used to say, “failure’s an event, lad, not a person” ‘ is the latest). It’s almost enough for me to put his brief foray into World of Pop to one side. Almost.

We, as a family, are, however, surprisingly immune to the lure of sun-sea-and-sand telly.  Until the kids and I went to school and entered the timetabled bond of terms we took our breaks decidedly out of season. There’s nothing quite like being on holiday in the wind and rain, determinedly being in the Outside with the hood of your cagoule tied firmly under your chin after all, and I, awash with sentimentality, of chlorine-fragranced memory, am decidedly fond of a spot of swimming through ice-pin prick raindrops.

Theres something about returning to the same place again and again, interspersed with the passing of years which brings them on, those memories. When you arrive, when you turn an unexpected corner, when your senses are assailed with sounds and scents that seem unchanged, you catch a glimpse of an earlier version of yourself, your child; your memories march, or flit, unbidden, into consciousness.

There’s the time I realised he listened to me after all; that he understood the stories and the songs as he, tiny in his all-in-one-against-the-ever-present-rain ‘woo wooed’ his way around the park, a trip around the perimeter in a carriage pulled by a Land Rover enough to make an outing.  And the time, my moment of disaster, when I stood at the bottom of my metaphorical mountain and realised that I could not go alone – but that to ask for help was not sign of failure, but of community.

There were times when watching squirrels and baby deer was enough, and when we, as new-ish parents found that what we needed was time to play together, to be the people we were before, together, and that we could make those moments happen for ourselves; the time I waited, new baby tucked inside, in the cold and the rain, telling stories at the train-stop, an ever growing crowd of little ones, sidling closer, the teacher gone, but not forgotten, awaiting her return.

And now, this weekend, a new set of memories to add to the store. An adventurous young man, whizzing down water slides too fast for his mother, and almost too fasts for his rather surprised papa. Reading the menu – and sending it back when the dish arrived and wasn’t as expected.  A presumption, and not, for a change, of difference and disability, but of competence. A girl, unbidden, checking that a float was finished with. A high five, testament to a shared nervous moment with a fellow ‘twister’ traveller.

It’s not easy letting go.  It’s not easy standing by and allowing him freedom – to make mistakes or hurt himself, as well as experience success. It’s not easy watching him take his first steps away. But it seems to me that unless we do, unless we allow, and encourage, this growing up, if we disallow his alienation from the ordinary things of life, and refuse to give in to the fear, the greater the chance for him that he won’t be seen as as some sort of strange, unknown creature from an alien nation.

Surviving Christmas

I seem to have found myself with a couple of spare moments and a handy computer to hand (or rather, that is what I am telling myself, I am resolutely ignoring the unmade beds waiting for me upstairs, they are airing; that is my story and I am sticking to it), so I thought I would (as you do if you are me) put my fingers to the keyboard and share a little of what we have learned about surviving Christmas.

  1. Look after your health.  We have been in the unfortunate position of being hospitalised thanks to various forms of chest infection several times over Christmas.  It’s no fun.  Sometimes, you have to accept that looking after your, and your children’s health has top priority.  This is especially important when you have a young family, you aren’t getting enough sleep because of said young family, and there are members of the family who have reduced immune systems.  Which leads me to:
  2. Think about reducing the number of communal events you attend. This is really difficult once you or your children hit the school system, but really, sitting in a cold church with a flushed and coughing child isn’t the way to get everyone into the festive spirit. You won’t get better, your child won’t recover and you will spread the germs about to someone else’s family.  Be sensible.  Christmas only comes once a year, it’s true, but it happens at the same time every year, so you know you’ll get another chance, all being well.
  3. Set your own expectations. It’s a bit like holidays with the children, really.  If they are happy, everyone can be happy.  There is an element to Christmas that is a bit like weddings; everyone has an opinion and everyone has a vested interest, but really, and especially if you don’t get much time off at Christmas, there is no reason why you shouldn’t have the day off that you want, or that your family needs.
  4. Make plans early. If having a Christmas day that works for you and your family means changing family traditions that have been set in stone since forever, start the conversation early, in, say, August.
  5. Adjust your expectations. Christmas can be a challenging time for everyone, and that’s before you add in special needs.  Some things may well have to be left.  Like family expectations, the trick (for me, anyway) is to think about the things that are really important to you and either keep them, or work towards them if your family members don’t feel the same way, and ditch the rest.  Understanding that the ‘perfect Christmas’ – whatever that is – is mostly fake helps to keep everything in proportion.
  6. Keep calm. I know it sounds trite, but Christmas can be overwhelming for ordinary children; and even more so for those with a little something extra. Along with your expectations, keeping a lid on theirs can go some way to helping them get through the day without too many tears and tantrums.
  7. Go easy on the gluttony. Every year, at about half past eleven on Christmas Eve, I look at my sitting room floor and I feel a bit sick.  I bought what I thought was a reasonable amount of presents – and so did everyone else.  My boys taught me a lesson (that I continually fail to learn every year) when they were small and I placed a little tin of chocolates as a surprise for them on the end of their beds before they woke up.  They were amazed and would have been perfectly happy with that and nothing else.  There have been years, when they were small, when the whole gift giving thing was a bit much.  Children learn what we teach them.  It doesn’t have to be that way.  I know it’s lovely to bless them with gifts, but you know, if they would rather everything was a little less exciting, why complain?  The same goes for the food.  You don’t have to eat – and neither do your kids – food that you and they don’t like, at a time that doesn’t suit you, just because it is the 25th December.

I can’t promise that what has worked for me will work for you.  Things like keeping it simple, letting people who have disabilities, or those who just feel like having a quiet time, celebrate the return of the light in the way they like, and finding a bit of room for my own needs works for me – and I am partly advantaged by my own preferences for quiet and calm.  Your family, and your needs, will be different.


I do wonder sometimes, if the long summer break, the One Big Perk, isn’t one of the reasons why people give teachers stick when they meet them at social occasions (that, and the way they suddenly remember all the teachers who ever told them off or made them feel silly over something or other).  They always mention it, that and the 9 til 3 thing.  No matter how hard we try we just can’t seem to persuade the general public that actually, teachers work really long hours.

The contrast between term time and holiday time is also one of the reasons, I am quietly convinced, that many people give up on the job after about five years.  It’s a bit like the way I once heard airline piloting described: hours and hours of sitting around doing very little punctuated by minutes of intense activity and stress – only the other way round.  It’s all very well if you are partnered up with a teacher and you can go off for the entire summer, live at the beach or a month and pretend that you are one of the gentry, so rich that you don’t need to work, but it doesn’t exactly promote a balanced work/life balance.  The constant see-saw between pressure and nothing is stressful in itself.

I’m not saying that children should be in school for any longer (if you don’t count my idea to make the school day longer, but with longer breaks contained within) – they are only children after all, and there is only so much learning and sitting at school desks, staring out of the window and longing to be as free as the birds that a child can reasonably be expected to do – but really, when you think about it, do we have to structure the school year this way?

Children can struggle with the long summer break – and especially those, like Sam, who have special needs, or who live in chaotic or unhappy homes – six weeks is a long time, and long enough to do some prodigious forgetting.  And while I’m at it, does it have to be in August?  I’m sitting here, watching the rain come down and thinking of July, when it was sunny, and too hot to teach, and everyone was grumpy because they had to be in school when really all they wanted to do was loll around doing nothing very much and that was just the grownups.

And we all struggle with the Autumn term.  I know the summer one goes a bit bonkers, what with sports days and end of year shows and assemblies and reports and exams, but that is nothing compared to the darkening marathon towards Christmas.  We start in September, all mellow and gentle mornings, and we end up, carols coughed out in the semi-gloom of the winter solstice, with about three days, taking away all the enforced visiting and merrymaking we have to do, just to spread the germs around a little bit more, to recover ourselves and get on with the next bit.

The thing is, though, that we can’t have schools trying it out, just as an experiment, like.  Schools are made up of families, and coordinating INSET days, from a parental perspective, is bad enough.  In my house, if you include my erstwhile school, we have four institutions to placate (including one parent who can’t just take a day off when she needs to).  If we’re going to make a change, we all have to do it together.


(Actually, if it were me, I would have July off, two weeks in October and three – at least – at Christmas.  Give us all a bit of time to decompress, get a bit of balance and restore good health.)


Sometimes I crave chocolate.  I long for the sweet melting, the instant hit.  I don’t drink coffee.  I don’t drink tea.  I never craved for coal, or cabbages.  But sometimes: chocolate.

More often, I crave sleep. Long, unbroken stretches of peaceful  slumber, the sort that carry on into the later hours of the morning.  The sort where I can lie, comfortable, without having to go to the loo, or put anyone back to bed, check anyone’s temperature, mop up sick or change wet beds, the way I used to when I was young.

When I was young there was no need for craving. The life free from responsibility, from care, where sleep comes when you wish, when sugary snacks are yours, no consequences asked. No eyebrows twitched with anxiety because everything was open to opportunity and everyone was invincible.

Now that I am older I distrust those who forge into the future with certainty, throwing caution to the wind.  I crave a time when the well of anxiety runs dry, when the weight you carry for one child means that the concern you have for another doesn’t drown you, helpless, in its depths. I quietly long for the days I remember, when vulnerability was a faraway concept.