Beware the TA

OK, before you start rushing to the defence of TAs (that’s Teaching Assistants to those uninitiated to the workings of the British school system), let me first say that I have worked with a number of really, really good ones, and that my life as a teacher would be hugely more difficult if they weren’t there. Let me also say that my children have benefited greatly from their presence and that I, and they, wouldn’t be without them for the world.

From a teaching point of view, I know how impossible it is to deal with a random, needy child with huge special needs when there is only one of you and thirty of them. I know that there are children who won’t do anything of much value, indeed, who will positively cause havoc in a classroom without an adult giving them 1-1 support. Sam would never have made it through a mainstream primary education without a TA. He would never have survived in the playground, or the squash of the cloakroom, especially in the early days, without the protection of an adult whose job it was to look out for him, to make sure he wasn’t becoming a target either for those little girls who would have picked him up and carried him round like a doll all day or those for whom difference brought out a much more negative response. He would never have made what progress he did in his lessons without one.

But.

And this is a big but. When your child has the kind of learning difficulty, like Down’s Syndrome, that necessitates a personal TA for every moment of every day there are dangers. Dangers that I had no idea might even exist before my son started on his journey through primary education in the local mainstream school.

Take getting dressed in the morning, for instance. The times I have cried tears of frustration that my ever growing eldest child wouldn’t put his trousers on, or his shoes, or clean his teeth, or do up his coat, or walk up the road or any of a multitude of things you expect the older one to do while you wrestle the baby into the snowsuit (more difficult than you would expect) or the toddler into the pushchair (gets easier the more experience you have) are way more than could be counted on the fingers of both hands and all of my toes. Why would Sam learn independence when he had his very own PA? Why would he do anything on his own when all of his experience in school, the larger part of every day, involved an adult sitting next to him, encouraging him every step of the way? Why should they care what effect this care had on my mental well-being?

I had in mind the sort of support that, over the years, faded more and more into the background, finding itself other jobs to do while keeping a watching brief on the child in question. I didn’t realise that other adults might feel the need to engage in a bit of justifying their own jobs by standing too close, or holding a metaphorical hand a little too tightly for a little too long. I had in mind the kind of TA who gave the teacher the limelight when it came to teaching; who encouraged my son to listen to what was being said at the front, to build a relationship with that important person, so that both could benefit from the knowledge of each other. To let that person be the expert. I didn’t know that she would be the person I saw most of all, not the teacher.

I knew that Sam would need this person, but I didn’t expect the relationship to be quite so, well, close. I was taken aback by how much I resented them in the early days; that person who worked with my boy so closely, but who seemed to have a slightly different vision to mine. I had nothing to do with any of the appointments to TA/PA to my son, so I swallowed that resentment, as hard and as big as an ostrich’s egg, in the hope that they would soon come to see what I did; the little boy beyond the label.

And what about his little heart? When he left primary school my own ached for the boy who was setting off into a new school all on his own. One of the reasons we chose a special school for Sam’s secondary education, class sizes aside, was that there would be no personal TA. Right at that moment when what you hope for your children is that they will grow in independence it was a no-brainer that he should go to a school where he would be allowed to succeed or fail by his own efforts, where he would be positively encouraged to stand on his own two feet. He wouldn’t need escorting between classrooms because he would lose his way in a big school, or be bashed about by large teenagers who hadn’t worked out where their bodies began and ended yet. He wouldn’t need to get to know two different adults for each lesson. He wouldn’t have to have a minder at lunchtime because he didn’t understand the money in the cafeteria.

But when he merrily said ‘goodbye’ on the last day of term, he didn’t know that it was ‘Goodbye’. He didn’t know that when he left primary school, so would the TA, because with him went the job. His distress when he couldn’t find her on that first afternoon we had to pop in to retrieve something left behind by the other two was palpable. He has struggled to cope without the undivided attention he certainly doesn’t get at home because there are two other, younger children, but upon which he had come to rely.

So what can I say? It takes a very special person indeed to be the TA for an included child like mine. To my mind it’s not the sort of job that fits into the category of ‘nice little job that fits in with the kids, preferably at their school’. She has to find her way through a complex set of needs and relationships: an anxious mother, an unsure teacher, a needy child. And ultimately she needs to work towards not only doing herself out of a job but also the breakage of her own heart.

TAs, beware.

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Inside Out and Back to Front

I hate the school run. I hate it with a passion. I hate the way that it rules my day, the way it starts it with a whirlwind when I am hardly ready to be awake, let alone charging up and down the stairs looking for lost shoes and swimming costumes. I hate the way it makes me shout at my kids first thing in the morning. It breaks my heart when I have to wake them up and drag them out of their warm cocoons of sleep, into the harsh, cold day.

I might not feel so passionately about it if my children were a little more biddable. After all, we haven’t far to go to get to school. Since we moved house there is no car to wrestle two awkward boys and a baby into, and the walk is only minutes up the road, but still. Some mornings I feel as if I have climbed a mountain and it isn’t even nine o’clock.

Most of the time I am far more aware of the similarities of my family’s to everyone else’s experience and this keeps me on an even keel, but I had one of those conversations a while ago with a friend of mine, where I realised that my life isn’t quite as normal as I usually persuade myself. We were having one of those moans you do about the school run that probably included the difficulty of the violins, and the dinner money, and the homework, and the packed lunches on particular days but not on others, and the scooters, and the bikes, and I happened to mention that I wished my daughter would get herself dressed. My friend looked at me in complete amazement at this state of affairs. After all, she is 7, and well able to do it herself; it’s just that we sort of fell into this pattern on a school morning, and it got me thinking.

OK. I put my hands up. She is my youngest, and I know that I am guilty of a certain amount of babying. She gets away with far more than she probably ought for the simple reason that she catches me out by growing up just before I have prepared myself for it. But in our family, it’s a little more complicated. There is an added dimension. My younger children don’t exactly have the best example in their big brother.

It’s a difficult thing, to try and put into words the nature of the maturity of my eldest son. In many ways he is just like any other almost teenager. He loves football, he’s becoming more aware of girls, he’s having a go at swearing (he might not get the words right, but from the intonation I have no qualms in telling him to stop or I’ll wash his mouth out). He goes to a secondary school, albeit a special one, and he’s certainly experimenting with the Strop and the Playing of Loud Music. It’s just that the music he plays is ‘musical timestables’, or ‘Welcome to Lazy Town’, and he’s more than happy to watch CBeebies rather than CBBC, Barney rather than The Simpsons.

My middle son finds it the most difficult to handle, this mix of older and younger brother. On the one hand, they know their position in the family. Sam knows that he is the eldest (if not the tallest at the moment), and expects this to be respected, and yet A is streets ahead of him in terms of understanding and ability. In many ways my dear, worried, anxious little boy needs an older brother who can pave the way for him, show him the next few steps. But instead he has a big brother he is heartbreakingly protective of, and who he looks after in his stressy little angry way.

Some things are made easier by the special-ness of my eldest son. Bed-times, for instance. Sam is a lark and no mistake, and there are many times when I have wholeheartedly wished that he would not get up so early, but it does mean that he is more than ready to go to bed at a more than reasonable hour. We don’t have to deal with my daughter asking to go to bed later and later, because the older ones do. The adults still get a nice long evening with complete control over the remote and the best seats on the sofa.

I have a good friend who tells me that her children love coming to my house because when they are here they are allowed to be young. We sit at the kitchen table bemoaning the State of the World Today, while her enormous children ride up and down the hallway on trikes we haven’t yet found a new home for and play musical statues while bouncing on the beds. Thanks to Sam there’s no pressure here to be anything other than who you are. There’s no hurry. We like what we like and we are who we are because wouldn’t life be boring if we were all the same?

It’s nice for the little ones that they don’t have a big brother who is pushing them to grow up before they are ready, but just sometimes, I feel like I could do with a bit of help. Because when Sam can’t dress himself without putting on a football kit when it should be school uniform, or shorts when it’s snowing, or at the very least getting them inside out and back to front, why should they?

Filling in Forms

One of the unexpected side effects of having a baby with Down Syndrome was that I spent the first eight or so years insulated from the kind of playground competition that is the bane of many parent’s lives. I don’t know if it was that Sam was particularly cute (he was), whether I am blessed with especially wonderful friends and family (I am) or whether I give off the kind of vibes that stop people from boasting about the achievements of their progeny in case I either burst into tears or punch them in the face (possible), but whatever it is, there is a tacit acceptance around him and me that making comparisons with his ordinary peers doesn’t work.

I really enjoyed being in this protected space, partly because it made such a refreshing change to the world I inhabit as a teacher. Education operates within what we call a ‘deficit model’, you see. We teachers have in mind a set of skills we want to teach our charges, a destination towards which we are journeying, and, in order to get there, we constantly assess what the children can’t do yet. When we mark their work, we always point out the things that they got wrong, or could change to make their work even better; very little unalloyed pleasure and celebration in their achievements is allowed.

When I had a baby who needed me to teach him almost everything, I found that, all of a sudden, I wasn’t working to this model any more. Anyone who has ever held a little baby in their arms, regardless of disability, knows instantly that they are an empty book, an unwritten page – there is not a lot of point in listing what they don’t know, because they don’t know anything yet. When I learned that my baby had a serious learning difficulty, correcting mistakes wasn’t part of the equation; celebrating the small steps along the journey of child development was.

I think that’s one of the reasons why I quite like the ‘levels’ we use as teachers, in order to describe the stage at which our charges have reached in their educational journey, even though Sam has spent most of his educational life on P-scales (they are a set of descriptors used by teachers to assess the learning of a child who hasn’t made it onto National Curriculum levels yet). In the day-to-day work of a classroom teacher, we can get very bound in tracking the progress that children make in their learning, but when it comes down to it, when the children we have nurtured throughout their primary years leave us, we give them a number, something that indicates to them, their parents and their next teachers, in broad terms, what they can do.

It’s all set to change, though, along with the new national curriculum in September 2014. Instead of levels, we will be working with ‘below’, ‘at’ and ‘exceeding’ ‘age-related expectations’. In a way, I can see what the Department for Education (or whatever it is called these days) is trying to get at. Most parents want to know that exact thing that my friends so sensitively refrain from discussing with me – how are their children doing in relation to their peers. This is all very well when your children are at the top of the class (who doesn’t like basking in a bit of reflected glory?), but my heart aches for those who are bumping along at the bottom.

As a teacher, I have always known that kids with SEN know very well where they sit in the class pecking order, and that the very last thing they needed was to have it shoved down their throats all over again that they were well below where they should be. It’s one of the reasons I detest those beautiful little wall charts that many teachers spend so long creating that aim to show the progress the children are making, as they shoot up into the stars, or over the rainbow; because there are always the same little faces who never reach the crock of gold, there, for all to see. Sometimes they don’t even make it off ground zero.
So when I hear that the new way to measure the progress our kids make in school is to put them into some sort of public ranking order, I feel disturbed.

One of the first things I discovered, when I started on my journey towards being a fully-fledged teacher, was the power of self-belief, of motivation. I vividly remember the little girl, who, according to her reading level, shouldn’t have been able to tackle the book of bible stories she determinedly read to me, because someone had forgotten to tell her that she was working at well below the expectations for her age. I took this lesson with me (along with a lot of other ones, I freely admit – maybe one day I’ll write about those too) when Sam was born. If he believes he can, if he really, truly wants to, then he can, as far as I’m concerned. (I would put whatever it is here, but I am wary of making such a broad statement. He might want a tattoo.)

Many people will accuse me of living in a state of perpetual denial, I’m sure. But when the future is a scary place I find it a much safer thing to live in the present, and take each day as it comes. Which is why filling in forms like the application for DLA (Disability Living Allowance) is such a difficult thing to do. In it, I have to put down in black and white all the things that my son can’t do, all the times I have to help him with something his peers can do, all the ways in which our lives are made more difficult by that tiny little extra chromosome. Instead of joyfully celebrating the fact that he can read the instructions on the Wii, or the Sky+ menu, I must engage fully with that deficit model. I must broadcast to all and sundry that my son, my beloved boy, is far exceeding his peers in his lack of progress towards, well, everything.

So that’s my big problem with the new way of assessing children, of assessment without levels. To hell with the fact that we teachers will have to invent a new language with which we can speak to each other, another layer of obfuscating jargon so that we can understand what we mean when we pass a child along to the next in the line. To hell with the parents who insist on engaging in a pissing contest in the playground over which colour label book their child is on, or which spellings they are doing, or which classroom they go to for Maths. At the heart of my disquiet lies the child who will be told that they are not good enough, that they are below the norm; the child for whom below expectations is a self-fulfilling prophecy.

Because, as I once said to the late John Peel, there is no such thing as a normal child.

The Random Nature of Rain

Sam is a random person. I don’t mean that he doesn’t do things that aren’t entirely predictable; I would not, for instance, when he was four and visiting a local fire station, have left him, unattended, in sole charge of the hose, while I pointed out the target he was to aim at. That sort of trusting behaviour is, frankly, asking for trouble. Neither would I, at around the same age, have left him with open cups full of any sort of liquid (particularly milk). (It wasn’t that I didn’t try to get him to drink out of a cup-without-a-lid for some years, but the trying was in usually short-lived bursts.) I also have to admit to a certain smug sense of glee that I was not the one locked out of the house when I had popped out to fetch some logs for the fire. In the rain. Neither was I responsible for the Engine Oil Incident.

It’s just that, on the odd occasion that you think that all is trotting along nicely, everybody and everything doing what you think they should, something happens, usually Sam related, which surprises you. Like when I returned home late for some long forgotten reason or another to find the boy tucking in to my tea. The tea which had appeared on the table only seconds before. His own portion of which the boy had already consumed. In Sam’s defence, he is not the only one of my darlings who has caught me out sitting on my laurels. A had a good go at raising my blood pressure the day he cleaned the toilet with my make up brushes, and L has perfected a line in injuring herself at inopportune moments.

There is a rather depressing inevitability, though, about the sleep patterns in our house. At first, I couldn’t figure out why Sam was constantly getting out of bed at all hours of the night when he started school. Shouldn’t he be tired, we asked ourselves in exasperation? When this happened after every single start of term for three or more years, I started to cotton on. It had, I suspect, something to do with being overly stimulated, coupled with a certain sense of anxiety on his part that if he didn’t get up he might be in danger of missing something.

These days, though, the problems with sleep occur not at the start of term (after eight years of schooling he has pretty much got used to it), but with the start of the summer. That moment when darkness lifts and the morning chorus starts at an ever earlier hour sets my heart sinking. This is because, even though he is pushing thirteen years old, we still cannot quite persuade him that it is night time when it is light. Sam must be convinced that we are all a bunch of complete lazy bones.

In the interests of sanity, we have tried many, many methods in order to keep the boy in his bed, with varying degrees of success. Clocks with sleeping and waking bunnies (do not disobey the bunny!), charts (with and without footballs), with siblings, without siblings, heavy duvets, no duvets, black out blinds covering every single window, a plethora of techniques, none of which have really worked, come the summer months. We can go for weeks without any trouble, and then something random will kick off a run of broken nights. Something that we have little, if any, chance of discovering. Nights like these have a tendency to slide into one long blur, but there is one in particular that remains in my memory with almost startling clarity.

Sam had been visiting our room in typical nocturnal fashion (dancing about by the door – no response, standing by the bed, huffing – no response, poking in the eye – grunting response), and we had reached the point of lying in bed, refusing to get up to the latest request to sort out the funny duvet or the funny pyjamas, issuing the stern command,’ GO BACK TO BED,’ in no uncertain terms.

The conversation went a bit like this:
Sam: It’s raining.
Us: We know. Go back to bed.
(Stumbles back to bed.)
(Returns after a few minutes.)
Sam: It’s raining.
Us: We know. It was raining when you went to bed. GO BACK TO BED.
(Stumbles back to bed.)
(Returns after fewer minutes.)
Sam: It’s raining.
Us: We know! It was raining when we went to bed. It rained all day. GO. BACK. TO. BED.
Sam: (Returns almost instantly.) It’s raining in the ceiling.
Us: Right! That’s it! (Adopts stance of marching of child in no-nonsense fashion back to bedroom.) ARGH! IT IS! IT IS RAINING FROM THE CEILING!

It’s amazing how much midnight blundering two small children can sleep through, when you come to think about it. Not even the discovery of a burst pipe, much swearing, the finding of buckets (protracted – why can you never find one when you need one?), climbing in the loft (crashing and carrying about of ladders), and propping up of umbrellas to protect said sleeping babes from the gentle pattering of an interior monsoon could rouse them from their slumbers.

Which just goes to show that keeping on your guard where your children are concerned is not necessarily a bad thing. You never know when you might need alerting to the random nature of rain.

What’s in a Name?

I’m not the biggest fan of labels. Not that sort that tell me how many calories there are in that chocolate bar, or the one that tells me when to throw out the yoghurt that’s been lurking at the back of the fridge, or the type that tell me what kind of place I have arrived in when I am on my travels. I’m talking about the labels we give to children, the labels that lock them in to low expectations and underachievement. I was very interested to read this , because so much of it chimed with what I have discovered on my little adventure with Sam.

Obviously, without the label, ‘Down’s Syndrome’, many essential services would have passed us by. No-one would be checking as a matter of protocol that his eyesight is doing what it ought. No-one would be keeping tabs on his hearing. There wouldn’t be anyone, other than me, regularly measuring his height and weight, no blood tests screening potential problems with his thyroid. I wouldn’t have been introduced to a whole community of professionals who made such a profound difference to his early life. Without it, we may well have had to fight for the support that Sam needed if he was going to be able to cope in a mainstream school.

As a new mum, I dutifully went along to therapeutic playgroups where I met physiotherapists, who taught me how to teach him to sit, roll over, crawl and eventually walk. I met play specialists who taught me new songs to sing, and reminded me of old ones, who showed me toys designed to stimulate the skills I was trying to teach. And I met a wonderful lady called a Portage Worker, who helped me to bring therapy into everything that Sam and I did at home, to make ‘learning how to take his first steps towards independent living’ a way of life.

One of the most important things that these ladies did for me was to support me in my view that my son was more than a label, that he was an individual, someone who was journeying into the unknown future just as much as anyone else. When someone made a remark, no matter how well intentioned, like ‘all Down’s children have speech difficulties’, they took my umbrage for me, and helped me to rephrase the comment into something that went along the lines of ‘many people with Down’s syndrome have difficulty in acquiring spoken language, so it’s a good idea to make a start with Makaton signing. They laughed with me over comments like ‘Down’s kids don’t get nits’. They felt the same outrage I did when to have an extra chromosome was referred to as akin to a ‘breed’. It became normal for me to look beyond the label, to see the little boy for the individual he is, and I, perhaps naively, assumed that everyone else who ever worked with Sam would feel the same.

By the time he was ready to start school, I was pretty confident that I had done my best to make Sam as ready as he could be for his entry into mainstream education. He knew his colours, could count to ten, knew which way round a book went and how to turn pages, make purposeful marks on a piece of paper, all that sort of thing. Yes, I knew that his development was significantly delayed, and yes, I still had yet to hear him call me ‘mummy’ but, I felt, we were well on the way. The foundations were laid.

We had, we felt, chosen a lovely school with care. The head teacher had impressed me with his calm acknowledgement that the school was there to serve the local community – whatever their needs, and Sam was, finally, entering a world I thought knew well. I wasn’t baffled by the jargon, or intimidated by busy professionals. I knew these people. These educators. I knew that the needs of the child was at the heart of everything that they do. I was one of them.

What I failed to appreciate was that the professionals to whom I was handing over my precious cargo were just as susceptible to labels as anyone else. In fact, in the five years I had been at home with baby, years which encompassed the introduction of a new SEN Code of Practice (that’s the way that Special Educational Needs are dealt with in schools, for the un-initiated), there was a veritable explosion of labelling children, many of which carry negative, and to my mind, often barrier-forming connotations.

The first inkling I had that all was not as I thought was when I watched the TA (that’s the teaching assistant) who worked with him playing ball in the playground. I watched, confused, as she played with him, and him only, fetching and carrying a ball I knew Sam was only too capable of fetching himself, having spent what felt like hours in our garden, gently throwing balls into his eagerly welcoming arms. When I heard that he had fallen asleep on her lap one story time I wondered why he wasn’t sitting on the floor listening with everyone else.

After almost a year in Reception class I began to wonder why Sam wasn’t bringing a reading book home, like all the others. I had spent the best part of two years travelling to Bristol to weekly speech therapy sessions with the Down’s Education Trust. He and I had learned the first lot of sounds; we knew the pictures, we knew the letters, we knew the actions. I wondered, in the later years, if the struggle I had to get him to dress himself in the mornings, to put on his own shoes, hang up a coat or carry his own bag was hampered, in part, by his having a personal assistant on hand at all times of the school day.

It occurred to me that the negative connotations of ‘Down’s Syndrome’ may be holding him back. Because, despite my not knowing anyone else with the condition, it turns out that there are an awful lot of people out there who do, and sometimes, just because we know one person with a particular label, we jump to the conclusion that therefore we know lots and lots about everyone else who appears, by their label, to be the same. We don’t.

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