Tag Archives: Down’s Syndrome

The growth chart

There are three little red books sitting in a row in a cubby hole in my desk.  At one point they took up far more of my attention than was probably healthy, and now they sit, gathering dust, rarely seen and rarely remembered.  Inside, they contain all sorts of useful information pertaining to the health of infants, including records of health visitor visits, immunisations and growth charts.  When you are at home with baby you can pore over them and obsess to your heart’s content.

They aren’t all the same, though, and I freely admit that I had a problem with it at the time, and to a certain extent, I still do. Inside Sam’s book there is a plastic packet containing the growth charts for Down’s syndrome.  At the time, I wasn’t ready to accept that he should be measured by a different yardstick.  At the time, as now, I couldn’t accept that different yardstick as symboliaing a different standard, of expectation or of care.

And, after going on seventeen years of tangling with doctors and nurses of his behalf, I know that I am right to be cautious.  Too many people seem to accept a lower standard of health and a higher threshold for pain for him for me to be entirely trusting of the protocols.  When a young person (or an old person, come to that) cannot advocate for themselves, be that because they are too young, or because they have some form of learning disability or difficulties in communication, you, as their parent or carer, have to learn to step in and make sure that things happen – sadly things like food and drink and getting the right medicine at the right time (and I’m not talking about the NHS in recent years, either).

But, and here’s the thing, he is different.  His physiology is expressed in a different way to the typical population, and, along with that, comes an understanding that in all sorts of ways he needs something different.  At first I understood it in the acceptance that, as his mother, I was allowed – and I was – to be more anxious than the average parent.  As he has grown, I see that he needs different, earlier, bed times at home, different, adapted texts at school.

In many ways, that growth chart represents both the blessing and the curse that is a diagnosis of Down’s syndrome.  While perhaps not so obvious to the untrained eye when he was tiny, it is there, now, for all to see.  Unless you are asking for help from someone official, like a government or local authority department or something, people can see, they can hear that he is different, and that adjustments will need to be made for him wherever he goes.  If only it didn’t mean that, at the same time, people who had less of an understanding, if not of Down’s syndrome, but of him as an individual, that expectations would be simultaneously lowered.  The application of a medical diagnosis to a social context isn’t always helpful.

I’ve never taught anyone with Down’s syndrome (if you don’t count Sam).  The children who have been through my classes have been the kinds with an invisible disability, like Autism, ADHD or dyslexia – and the vast majority of them haven’t had a diagnosis at all.  And, as their teacher, I have made all sorts of adjustments in order to make my classroom the kind of place where they can learn, from special places to sit to requiring the rest of the class (and myself) to change our behaviour or printing out the words in a larger format.

Which is why I am confused by the assertion that it is only those children who have a legally protected characteristic who I must make adjustments for.  If you want learning to happen in your room (or your corridor) then adjust you will, in a hundred million little ways, from creating a calm and purposeful atmosphere of mutual respect (and no, children don’t mind when they are asked to stop teasing/winding up certain individuals, in fact, quite the opposite, and no, they don’t mind when some children need more stickers than they do, again, quite the opposite, unless we bang on about it not being fair and make out that it is the stickers or the ‘special treatment’ that is the important thing, rather than the learning) to adapting materials and resources so that they can be universally accessed, or finding a different way for a child to show me what it is they really know rather than tying themselves in knots over spelling in a science lesson.  To suggest otherwise is to perpetuate the myth that teaching is (or should be) easy, and that special educational needs isn’t complicated.

And no, I don’t see that as a lowering of standards.  What it is, is an understanding that an education is a process and that you will never, especially in a child, be presented with the finished article. Because, in the end, learning is fundamentally unlike that one dimensional, linear, medical growth chart.

 

See also:

https://notsoordinarydiary.wordpress.com/2016/10/30/the-teacher-and-the-doctor/

https://notsoordinarydiary.wordpress.com/2016/05/01/clickbait/

https://notsoordinarydiary.wordpress.com/2016/01/01/removing-the-rose-tinted-spectacles/

https://notsoordinarydiary.wordpress.com/2015/05/23/the-secret-teacher/

https://notsoordinarydiary.wordpress.com/2015/07/14/reality-check/

I’m trying desperately to keep on saying the same thing, but in a different way so you don’t get bored.

 

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.’

Learning Through Play

It is one of my abiding sadnesses that Sam, through no fault of his own, does not go out to play with friends. At the moment he is, like I was at a similar age, listening to terrible music far too loudly and not feeling the lack. At the beginning of the holidays he is likely to be happy in his own company, mooching around the house, generally doing what he feels like; it is next week that I will find a young person telling me that he is bored, seeking something else to do and the company of his friends.

I don’t know if it’s something specific to Down’s syndrome, but I am wary of letting him out to play on his own. I recently had a conversation with the person who is handling his Personal Independence Payments (PIP) – now that he is 16, he is entering into another era of state involvement – and we talked about how, if he was out and about on his own, how easily it could happen that he might get lost, his limited understanding of danger, both in the environment and in terms of the trust he places in other people. Maybe other parents of disabled children feel the same way, I don’t know.

I can’t help but feel that he is missing out. When he and his younger siblings were little we used to do that thing that stay-at-home mums do in order to keep themselves from going round the twist, and meet up, as a big group, all together.  It was fascinating to watch the children playing. First, they would play side by side, and then slowly, they became more aware of each other, probably because they both wanted to play with the same car/train/dolly/teddy/other object of desire, until before we knew where we were they were playing with each other, chattering away and well on the way to becoming friends.

Now, partly because he attends a special school and therefore none of his friends live around the corner, partly because of the advent of the mobile phone (he doesn’t have one and I have no idea how to find out someone’s number unless they give it to you themselves), and partly down to my own sense of caution, I find myself at a bit of a loss as to how to help him gain the invaluable learning experience of unsupervised play with his peers.

Because, you know, it would be foolish to assume that there is no value to children’s play; that they should be always organised, never left to get on with it, in their own way and at their own pace. Oh, I’m not saying that it should take place in classrooms – although this doesn’t mean that the classroom should not be a playful place, one full of fun, and the joy of learning interesting things (and yes, I do accept that not every child will find the same thing interesting, although, if I am their teacher, I will do my best to persuade them of the wisdom of my way of thinking) –  but that children’s play, especially the unstructured sort where they learn to regulate their own behaviour, to manage their relationships, is an essential, an unmissable, part of growing up.

Maybe we are all afraid. Maybe it’s not just me. Maybe the world we live in is full of danger. Of cars. Of strangers. There is the ever present threat of failure, or of falling behind, and it affects us all. Maybe I’ve got a better reason than most to be fearful, but it strikes me, as I watch my children negotiate with each other, as I watch their kindness to the boy next door, as my role as arbiter and sorter out of fights is steadily lessened, that, if we are not careful, our fear will make us into fools.

 

First Class

I went to That London yesterday. Now that I am no longer working in school, but as a consultant teacher, I get to go there once a week, on the train. This would not usually be a thing I would remark upon, after all, thousands of people go to London on the train every day of the week; except that yesterday, it was a little bit different.  For some reason, the coach in which my seat was booked was a first class one.  I double checked my ticket, I checked that it matched the one sticking out of the top of the chair, and yes, indeed, there I was, entitled to share the rarified atmosphere of the Preserve of the Posh People.

I wasn’t alone in my surprise. Opposite me was an equally excited traveller.  We chatted all the way, expressing first our astonishment at our good fortune, and then discovering a shared interest in things educational, him having lived and worked in Singapore for five years, and me being an SEN parent/teacher years further down the line (he took notes on what to write about in the parental statement part of the EHCP).  It was really rather nice.

First class seats are so much more comfortable. They cushion your frame as you whizz through the countryside; there is room to stretch your legs, should you so desire. If the sun comes out (it did) and makes you squint (it did), there is a little curtain you can pull across the window to shade your eyes. If your computing devices need a charge – or anything needs a USB, there is a plug AND a USB socket (with a handy blue light to show you where they are). The table is big enough to fit your things on. If you are tired and need a little rest, the carriage is quiet in a superior kind of way. It is, I am convinced, an excellent way to travel.

I arrived at Paddington feeling refreshed (which is remarkable in itself, since I had been awake since 4 – you know, that strange sense of alert wakefulness that attacks you in the small hours when you know you have enough time to get back to sleep, but you are convinced your alarm is going to go off any moment now), and strode off to start a very productive day thinking how nice it would be to get a First Class ticket for every journey.

There must be people around who never go any other way, and sometimes, I can’t help wondering if those who make public policy aren’t those who, in a sense, travel First Class everywhere.

They are wealthy, so they never know what it is like to count every penny to make sure you can pay the mortgage, or budget for the next pair of shoes, crossing your fingers that they won’t grow out of them til the end of the month.  Their children are always super-bright, like they are, so they never have to worry about what happens to them if they fail the test, or if they can’t get into Top Set because they used up their compliance quota just sitting quietly and they haven’t any energy left for any learning. They don’t worry about the impact on their children of being told by trusted teachers that they never quite measure up, of always finding themselves always in second class; it never occurs to them, because, well, it just doesn’t happen and if it does they are wealthy enough to buy them a place in a private institution that will repair their self-esteem with a good dollop of privilege.

But if you never went there, you would never know what it was like in Second Class; that there isn’t anywhere to sit, and that choice is never going to be an option because you can’t afford the ticket, or you have competing monetary priorities. You would never understand the way your body aches, from being forced to squash itself into the same position, for fear of standing on someone else’s toe, or brushing your leg against their knee.  You could very easily assume that, because you also travelled on a train, that your journey took the same amount of time and your ticket was checked by the same person, that you understood.  But you don’t. You have no idea.

I know I’m a better PE teacher because I didn’t like Games. I know I’m a better teacher because I have spent time outside, in the corridor, with the neediest of little ones. Am I a better parent because of Down’s syndrome? Maybe, maybe not. But I know I’m a more realistic one.