Tag Archives: Inclusion (education)

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.

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SEND and the law

A very dear and very old friend of mine (as in, we have known each other since we were girls, not that we are Of Ancient Times, despite what I may be told by my middle child) is a lawyer. While I was teacher training, she was ordering up a wig and gown and hurrying around London carrying large boxes. It’s a very different life. At one time, I too was going to be a barrister; I was rather taken with the idea of wearing said wig (and gown) and arguing the case and saying ‘me lud’. A little bit of work experience, however, soon put paid to that idea. Then, as now, I find that I am unsuited to the law.

My friend A is not the only lawyer of my acquaintance, you see. These days I know several, in both a personal and a professional capacity, and they are almost as different to me as it is possible to be – all perfectly nice and lovely, but very, very different.

For a start, there is their commitment to details. They just love them. They love ferreting them out meticulously. (I’m more of a big picture, grand statement, splodge and mess making kind of person; my teachers used to sigh, as I grandly made pronouncements, and failed to back them up with evidence.) Off they go, burrowing into this, that or the other Act of Parliament, surrounding themselves with stacks of books of case law, with a sense of joyful purpose, finding out.

Then there is the letter writing. OK, so I can do a good letter, but I don’t do lawyer letters. There’s something about them that is spoiling for a fight and they just love it. Me, on the other hand, is more often to be found quaking like a jelly and wringing my hands over appearances and getting along. Lawyers, they just don’t care. Confrontation is their stock in trade. They thrive on it, that and their sense of justice.

Advocating is something they do so well, and so comfortably. Me, I do it all the time, but without the anonymising wig and gown, the creation of an official persona, backed up by years of history, I find myself standing on shifting sands, rather than the solid stage of the courtroom. Where lawyers win their cases through the full force of the law (when my sister and I were children, we were fond of playing the game that involved us banging on closed doors, declaring ‘open up, in the name of the law’ in loud voices), I find myself arguing for the spirit, rather than the letter. I’d much rather people just did the right thing.

The thing is, though, that they don’t. Last November I went to a conference on design for disability, and the point was made, again and again, that the laws exist to protect disabled people, and yet again and again they remain broken. Again and again, in all sorts of fields, from websites to coffee shops, we, as a society, fail to treat disabled people properly. And by that I don’t only mean people in wheelchairs, I mean people with learning differences too.

And, as I watch the debates that swirl in education, the ones that touch special educational needs and disability, about the way that we, as a community of adults, treat children, and disabled children at that, I think that we aren’t any better than the businesses who don’t provide disabled toilets, despite our claims to the moral high ground conferred by public service. Current narratives that speak of giving disadvantaged children opportunities brought through education fail to notice that they speak of disabled children too – the ones who seem so quickly excluded, thrown out, and written off as disruptive influences.

The plain fact is that those disadvantaged children we purport to save are the very same as those protected by Acts of Parliament, such as the Equality Act (2010) and the Children and Families Act (2014), not to mention the Teacher Standards and international agreements such as the UNCRC.

And I can’t help wondering just how much longer they will go on being ignored.

 

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.

Blood, Sweat and Tears

I sent out a tweet the other day.  It was a little, innocuous retweet of a picture of a little girl, trying on her school uniform for the first time.  In it, she is clapping her hands, as pleased as punch to be wearing a blue checked dress, her hair in a ponytail, shiny black shoes as neat as a pin.  Clearly, her parents were pleased as punch too because they sent it out to some big hitters in the Down’s syndrome tweeterverse.  I saw it and I was glad to share it with the many teachers with whom I am connected in a virtual sense.

It had a surprisingly large effect.  To date, it has had 32 retweets (which is a lot for me), 90 people have saved it with little love-heart likes, there have been 8,672 impressions and 148 total engagements (whatever they are).  I’m pleased, because I thought at the time, and I still think it this morning, that it is an important little tweet for people to see – and to notice the three, innocent sounding hashtags that follow. #inclusion #acceptance #school

You see, I too have been in the place of this mother.  When my son was standing there, all togged up in his little school uniform, ready to take his first big steps away from my side (I don’t count the little ones at nursery, it was only two and a half hours anyway, hardly enough time to get there and back again and make a cup of tea in between) (if I was the sort to drink tea), I, too, was filled up with a sense of importance of what his entrance into mainstream school would mean.

You see, what I don’t think that many people understand, and why should they after all, is quite what it is like to be told that your child, the baby you hold in your arms, the one you have waited for, anticipated with such joy, is somehow less; a cause for concern.  It’s a shock, I can tell you, and not a pleasant one, either.  People who have not had this experience don’t know how it knocks you sideways, how long it takes to recover, to rebuild the life you thought you had lost.

And, again, what I think many people, many teachers, don’t understand is what an important role they play in regaining, reclaiming that stolen joy, in denying the less than and turning it on its head; the way that they can turn the role of the state from destroyer of dreams to healer and hope.  They don’t understand, and there is no reason that they should, the importance of their symbolic role in the life of another.

But, and here’s the thing; what will happen when inclusion turns out to be less warm and fuzzy and more blood, sweat and tears?  Will we blame the parents, for not telling the truth about their children, for carrying on in an irresponsible manner? Will we blame the children, for being too disabled, too needy, too naughty, dangerous, even?  Will we, instead of examining a system that fails to put in place proper and adequate support, for teachers, for families, for children, blame everyone but ourselves and throw inclusion out of the window?

I do not wish to peddle a kind of warm and fuzzy inspiration that has little effect and no lasting value, for, while the smiling faces of cute little children with Down’s syndrome and tales of inclusion might make us feel good in the moment, will they help when the going gets tough?  It might be enough for me, because I am driven by more than a moral imperative, but will it be enough for you?

 

Conquering the Mountain

Today, I have very tired legs. I am convinced that this is a genetic flaw on my part, and not because I have been avoiding most forms of exercise for the winter, but my family remains unconvinced. They, unlike me, are tired, but able to tackle the stairs without wincing. And the reason we are tired? Earlier this week, we decided to walk up and down Snowdon.

I’ve written about this plan before. For some strange reason, it has subconsciously been one of those things that R and I felt was something our kids ought to do. I’m not sure why. I never did when I was a child. I never went anywhere near the place. And, when it’s all said and done, we aren’t really a heavily into walking kind of family.  Nothing like it, in fact. But, we had a week off and nothing on the calendar apart from ‘week off’ in it and, as going on an adventure of the far flung variety proved to be a little more expensive than we had anticipated, Snowdon it was.

I don’t know about you, but there is something tantalising about good ideas when they are far, far away.  Everything about them seems positive. Nothing troubling can possibly get in their way. Except, that is, until you are faced with the reality of your endeavour.  There we were, new boots and posh socks for the children bought, accommodation (very nice) booked, and there I was, wide awake in the darkest hours of the night, unable to sleep for worrying.

In a way, it’s a bit like giving birth. After the first time, you sort of forget what it was like. The experience is coloured, airbrushed by the aftermath, whatever form that took. The second baby seems like such a good idea, and it is only when you are stopped in your tracks by the strength of your first real contraction that you think, oh, yes, that was what it was like, and why am I doing this again? After that, it has a tendency not to fade, and, third time round you know exactly what you are doing and you develop a sort of grim-faced determination, gallows humour about coughing in public daytime, and will making in the silent privacy of the night.  Once I was faced with the reality of getting my three kids up and down a mountain, with online guide rating ‘hard’, the euphoria of success faded and the memories flooded back.

So we came up with a plan. R would walk the Little Two (not so little these days) up, Sam and I would meet them at the top, having been transported by train, and we would all walk down together. A plan which rapidly transformed itself into Sam and I would travel as far up as we could on the train (always check train timetables before booking)and then meet the others (at the bit where all the tracks join together, just before the summit), walk the rest of the way up and then back down together, hastily followed by we would all go up on the train and all walk up a bit and down a lot together (the operative word being together). The thought of me on my own with Sam, on a mountainside, and the pair of us getting an attack of the collywobbles was enough to settle the matter. (And that’s before Train Boy stuck his oar in.)

When you’re at the top, it can feel terribly lonely – and the way down terribly terrible.

The thing about plans, though, is that it is always a good idea to have a contingency one. Because, when you get up to the (nearly) top of the mountain, things change. The weather, so kind and gentle when you set out, is cold and chilling; the wind is fierce, and the clouds, so far away when you are sitting, comfortable, on the bus, transform the landscape from majesty to terror in an instant.

We didn’t do it. We didn’t make it to the top. We got to within spitting distance (if the gale that greeted us as we came onto the ridge hadn’t threatened to carry our spit over the cliff and us with it) of the summit and we changed our plan, and our minds.  We took in the frightened faces of our travelling companions, looked through the entrance to the Pyg track, obscured by wisps of cloud whipping past and turned right back round the way we had come. And, I think, for perhaps the first time, I feel no sense of disappointment, or of failure, that things did not go as we had thought.

The weather did not look like this.

You see, and this is something I have found myself thinking Justine Greening could probably do with reading as I have watched her on the news today, you don’t need to terrify everyone or force the issue and put yourselves, and your children, in danger in order to prove a point.  When I wrote my book (details on how to buy it here), at the end I put in a section on what to do if it all goes wrong. Because sometimes you find yourself at the mercy of circumstances which you cannot control, sometimes you find yourself in the wrong and you have to apologise – and there is no shame in that.

This week, we set ourselves a task, and we failed. But, and here’s the thing: we made it back down in one piece (and that in itself is a success). We went the long way round (and even that had its hair-raising moments), we chatted to the people we found ourselves journeying with and shared encouragement along the way. We might even have done a little bit of Down’s syndrome advocacy while we were at it.

We are still here, today, and the mountain, that great big grim-faced mountain we couldn’t even see, will still be there, waiting for us should we decide to play again, tomorrow.

‘I hate mountains.’