On diagnosis, parents, teachers and clinicians

A couple of summer holidays ago I wrote a book. I enjoyed writing it a great deal, it was a strangely cathartic process, and it was published last May.

You can find details of it here, and buy it if you like.

Over the course of that summer I found myself asking a question – should I include the bit about specific labels, or would doing so blind readers (labels can be a bit dazzling), and get in the way of them finding out about the child?  Or, should I leave it in, as information about the sort of diagnoses that teachers are likely to come across is useful in that it demystifies them? I debated with a number of my teacher friends, and in the end I compromised. I left them in, along with a largeish section on the problem with labels, the different kinds of meaning they hold for different people (adult and child) and how a teacher needs to be aware of this and bear it all in mind when teaching.

The other thing I thought was important to put into the book, bearing in mind that being the expert in the classroom can give a person the impression that they are the expert in everything (or at least, that’s how it can be perceived from the outside – there is also a section on saying sorry and how to manage mistakes), was clear and unequivocal guidance on what a teacher is able to diagnose – or not.

Here is a quick taster:

Autism Spectrum Disorder : a teacher cannot diagnose

Attachment Disorder : a teacher cannot diagnose

ADHD/ADD : a teacher cannot diagnose

Down’s syndrome : a teacher cannot diagnose

I’m sure you get the picture. These things are diagnosable, not by teachers, but by clinicians, that is, medical doctors and psychologists (who may also be doctors).

You can find a reflection on a medical diagnosis and what it looks like in practice here.

What this means is that the problems a child is facing in the classroom are problems that they face everywhere – down the shops, in the swimming pool, in the home, all the time. Aside from Attachment Disorder – and even then, when a child is adopted, this is not the case – these diagnoses, or labels, have nothing to do with parenting, style or anything else.

But to get back to my list, next up:

Dyslexia – can be diagnosed by specialist teachers (the specialist bit is important –  you need to complete further, demanding qualifications in order to be a specialist dyslexia teacher with the ability to diagnose), parents/schools (does a school ever do this?) have to pay around £500 for a full assessment of dyslexia

And then we come to yesterday. Yesterday there was a report published (you can read it here), based on a survey commissioned by an assessment company, GL Assessment, that claimed (in a nutshell) that teachers think that labels of SEN are obtained by the pushiest of parents (and by default, the wealthiest and most middle class), and that this means that some children, who need and deserve support (presumably the children of the poor, or JAMs), aren’t getting it. Sounds like truth, doesn’t it? The squeaky wheel and all that. Except when you contrast it with the statements above, and the fact that we have (for now) a National Health Service.

Are we teachers really saying that we don’t believe in clinical diagnoses? (see press release here)

Now personally, I don’t think anything of the sort, but I do think, because I am a teacher and I know how difficult it is to balance a class and to understand the sort of SEN that doesn’t come with a diagnosis (the sort that is most common in classrooms), that questions about teacher perceptions of labels of SEND need to be very carefully framed. Firstly, because SEND does not mean some sort of group of children where each one is the same, facing the same kind of difficulties: homogeonised. And secondly, because, if you are not careful, what you actually get in answer to your question is something completely different.

If you look at the survey (link here) I think what you find are two things:

1. A lack of understanding of the reality of SEND by the questioner.
2. A neat exposition of teacher attitudes towards a certain set of parents (mothers, let’s face it) who are exhibiting anxiety about the educational progress (or not) of their child/children.

I’m not going to go into the reporting of the results of the survey (although the Guardian – what were you thinking??), I’ll  save that for another day, except for one thing – a press release is an important document.  Read an excellent exposition of the dangers here.  You can see two contrasting reports on it here, from TES and here, from the Guardian, and draw your own conclusions.

Needless to say, if I was writing it up, I’d have written it very differently, because guess which SEND assessments (among others) GL Assessment sell? Dyslexia.

Politicians and Conferences: A review

Yesterday I had a lovely day. I hurried around That London feeling very pleased with myself (apart from the bit when I was squashed into an underground train and there were too many people and my feet were hurting) and generally surprised that I was doing what I was doing and going where I was going and it was actually work.  My head has been full of it all day; fractured impressions I can’t quite order into jigsaw pieces. My thoughts are like broken glass, scattered, rather than collected.

It’s been a busy month. I’ve been to meetings, to conferences (well, ‘summits’ – Head Teacher’s Roundtable and WholeSchoolSend), I’ve observed not one, but two education ministers (if you don’t count December, where my young colleague took photos of Justine Greening from a distance and we lobbied Nicky Morgan up close, and I gave her a copy of my book), and that was work too. I’ve gone from the hallowed halls of Westminster, where the very buildings speak of the timeless solidity of an unchanged State, to the Crystal, a funky glass edifice, modern and futuristic, a building that transforms dereliction into…something else entirely.  It’s been a lot to process, a lot to make into some sort of meaning.

At first I felt despondent. There is so much talk around SEND (well, make that education generally), so much moaning and complaining (workload, marking, planning, Ofsted), so many arguments that circle around the same old same old (I’m not going to bother making a list; pick your own subject, I bet teachers, somewhere, have argued about it til the cows came home), and yet, despite the arguments, nothing ever changes. Or if it does, like the introduction of grammar schools, it doesn’t matter that the profession is, for once, united, it happens anyway.

It’s a topsy turvey strangely powerful yet powerless world.  One where every day we sense the change we bring about in the lives of the young people we teach and yet. Yesterday I met a headteacher who had struggled in her SENCO past with the difference between the pretty looking paperwork and the not so pretty reality it purported to describe. How many of us struggle with the overriding need to satisfy the hunger of the evidence beast, I wonder? We tick the boxes, check off the lists of Things we Must Do, too busy or too reluctant to stop and consider the second story, the one that is woven underneath, and what it means. We satisfy our powerlessness, an attempt to redress the balance, with blogs.

There were moments of disappointment. A minister who said the pretty things, reiterated the rhetoric of inclusion to a captive audience, a repetition of the same old, same old sweet nothings that do nothing, and change nothing. ‘SEND must be at the heart of education policy making,’ he said. I wondered whether he had ever met his colleague, the minister for schools, a man bent on unteachable tests so that more children can get the sort of top grades (despite an exam system that means they are norm referenced) that look good on international performance tables.

Moments of misunderstanding, where the gulf between the profession and those of us who parent children with special needs and disabilities seemed uncrossable, unbridgeable, and I wondered how many more times I would have to tell our story of diagnosis. Moments of passion and anger, when a young man declared in a strong voice that he was a man and a proud one at that, and a mild mannered ex-deputy head railed against a system that tried to pretend the disabled didn’t exist, a forgotten, disregarded kind of human.

Moments of enlightenment when a woman explained her intersectionality, how young people cannot be what they cannot see, and of hope, when a newly appointed headteacher declared her commitment because she believed it was important and the right thing to do.

But it was only when I got home, when I went out for a walk with my mum, in the cold spring air, when we told each other about our weeks (well, it was mostly me banging on; thankfully she is used to that) that the moment of joy returned, when I began to think that the shiny glass and stone didn’t merely cover up the past with an illusion of change. Because, when I watched the evidence session of the Select Committee for Education I realised something; I realised something had changed.

Despite the fact that the minster for schools clearly hasn’t a clue, the committee members have realised something quite fundamental. That ‘Children with SEND’, that homogenised group, the not-quite human children who somehow belong to Other People, are just like them. They are the children who cry at night because they can’t complete the test. They are the children, comforted by their grandmothers, because they think, at ten or eleven years old, that they have not only failed, but are failures. The sort of children who have bedtime stories and cuddly toys. The kind of children who are unconditionally loved. They could, by no small stretch of the imagination, be theirs.

The Bird

There is a bird that flies in my imagination.  In my mind, she flits between personalities, sometimes fierce, sometimes tired, always symbolic.

I like to think that in her younger days she was like a swallow.   A creature of the summer sky, she would swoop through the crystal air, taking her chance to dance, just because she could.  She would cover vast distances easily; nothing would ruffle her sleek plumage.  Any danger or shadowy sense of doom would be outstripped by her speed and agility.

But, when I think about that bird, I cannot see her younger self.  The swiftness of the swallow exists purely as a moment in an imagination intent upon exploring a metaphor.  Far more powerful, more strongly imprinted on my mind’s eye is the bird of prey. Not showy; camouflaged. Easy to miss if you didn’t know she was there.

This bird sits (she does not perch); she claws herself into slick rock, or digs into the narrow platform of her solitary vantage post, her feathers separate and spiked in grey rain.  She does not fly often, rather, she waits, waits for a moment that, perhaps, will not come.  What she waits for I do not know. Perhaps a break in the weather, perhaps prey. Her stillness is her defining factor, punctuated by the flicks of feathers against the dripping rain, the flickers of focus that betray her gaze.  Hers is a world-weary eye.

She is the contrast to the movement that surrounds her.  The falling rain, the branches of the trees, disturbed by the howling wind. Leaves tumble and flutter to the ground. Birds, large and small, the young chasing, the old leading, navigate the rolling clouds. Her power is contained, restrained; her wings may itch to fly, to join her kind, but they do not stretch, her moments must be well chosen, too precious to squander on a flight of fancy.

For this bird is not the sort that flies, free from care or from responsibility. This bird is not the sort that has reached this point unscathed. She carries her past with her; her pain ensures the precious nature of every flight.

I wonder what stories she would tell, if only she could. I wonder what wisdom she would impart, but she settles, a shiver, a shrug of her shoulders, a hunch against the elements. I wonder who she hides beneath her wings.

 

 

 

 

A Letter of Complaint

Heard

Believe it or not, I am not given to complaining. Not officially, anyway. I think it must have something to do with my Britishness; I don’t like to make a fuss. Either that or it’s because I’m inherently lazy. I don’t like to have to exert myself. Or maybe it’s because, like many disabled people who find that bits of the world they are negotiating are just not accessible, it’s easier to simply turn away and take my money elsewhere.

Or maybe it’s because there is always a little bit of me that wonders if it wasn’t, somehow, my fault. Getting the wrong end of the stick is entirely possible. I’ve always got half my mind occupied on something else; I live so much in the present moment that things like the start and end of school holidays or bills have a tendency to creep up on me. I’ve damaged my car in the past because keeping an eye on baby meant that I wasn’t keeping an eye on the gate post.

When you have a disabled child, a baby with Down’s syndrome, bearing the blame can get to be a bit of a habit. Your very existence is an insult to some people. The simple act of turning up and assuming you can take your place in the ordinary world, just like everyone else, is enough to get you into trouble. You get used to the difficulties that including you and your funny little family causes other people being your fault.

I find myself wondering if this continued experience of blame hasn’t got a major part to play in my reluctance to make a fuss.  Oh, I don’t like conflict, I’m the first to admit that. It makes me uncomfortable in whatever guise it takes. I’m usually the first to say sorry, the first to seek to make amends.  It gets tiring though.  To constantly live with the cognitive dissonance of knowing that you are actually in the right, that there are even laws that exist to protect you and your child and whose existence has firmly put you there, both feet on the ground, the right side of the line, and yet have people, especially those in positions of power telling you that you are, in fact, in the wrong.

You didn’t ask early enough.  You didn’t tell us in time that you would be coming along.  You asked in the wrong way; you demanded (rather than begging on bended knee).  You were rude. You were weird, strange.  And then there is him.  He was challenging.  He was naughty.  He was inappropriate, difficult, dangerous and wrong.  And by association, me: bad mother.

It’s funny when you think about it.  There is a whole industry out there, raising money, giving grants, running training courses, paying for helpers to make the world, and its activities, accessible for disabled people.  And at the same time, there is a whole load of other people, working away to make life as difficult as possible, to throw spanners in your way.

And you know what I reckon?  They don’t do it because they hate disabled people or their mothers or their families.  They do it because they can’t bear the fact that they got caught out making a mistake, getting something wrong, being the same as all the rest of us; human.

You know, when I make a mistake, given the chance, I’ll say sorry.  I’ll admit it and apologise.  I don’t feel the need to attack someone else in order to keep the world thinking that I’m perfect, that I never make mistakes.  Because, believe you me, one day, someone articulate, with good friends and good advice, despite their disability, will come along and show the rest of the world what you did, and they will all see that the pretense of perfection was exactly that.

The Fear of Food

I read a post the other day, a simple, factual piece about the reality of parenting a child with complex needs, and it struck me, again, how much less I would know if it weren’t for my Sam.

I can use a great deal of what I have learned over the last sixteen years together in my professional life. Reading behaviour, the tiny expressions that flit across the face of a child, gives me insight into how they feel without them having to utter a word. I have learned when to press and when to back off because someone has had enough, as well as honed my ability to see the small steps in learning and look for the next.

Some of the things I learned though, the things I wouldn’t have learned if he wasn’t there, are faded. They slip into the recesses of my busy mind, and I fall into my habitual state of believing that I don’t know very much about anything really; that I am unqualified.  Now that my family has slipped into the comfortable groove of routine, with only occasional trips into worry, it’s easy to forget the road we have travelled, which, to be honest, has been long and, certainly in the early days, arduous.

So, in order to avoid this post becoming a country mile (something it is already threatening to be), I am going to get to the point, and tell you some of things I learned about food and feeding that, you never know, might help someone, should I ever figure out how to publicise correctly.

It starts early.
After you have given birth to baby, the very next thing, once you have got over the relief of getting it out and surviving to tell the tale, is to feed it. There is immense pressure to get started. Now, a lot of the time, this goes swimmingly. If you have made up your mind before the day how you are going to feed your baby and, especially if you are breastfeeding, you get a baby who seems to know what to do, Bob is indeed your uncle.

If, however, as happens to many, you don’t, and you get one that refuses to stick to the plan, you have instantly introduced a level of anxiety that is hard to overcome. Not all babies breastfeed easily, special needs or none. If you are determined to do it you are going to have to dig down into more physical reserves than you thought you had – and you need the support of your partner.

It is entirely bound up with your emotions.
Feeding your baby, and keeping it alive while doing so is a kind of fundamental act, and the inability to feed them can and does impact on your sense of self. When you see someone else doing it differently, it can feel like an attack – even years down the line, when grandchildren come to call.

Breastfeeding a baby with Down’s syndrome is possible. Challenging, but possible. I know, because I did it.

Everyone has an opinion.
Everyone. Every single person in the entire universe has an opinion on it. It’s almost as if feeding your baby is a public, rather than private act.  When your child has a problem with eating – of whatever sort – and you sit at the table with them and a gathering, everyone seems to think that it helps for them to comment on it or attempt to get involved, uninvited. It doesn’t. It just magnifies it and makes them, and you, feel worse. Funnily enough, Sam made his first forays into feeding himself ‘proper’ food when we were out at a pub lunch, too busy chatting and watching the world go by to notice what he was doing. Once he got going, there was no stopping the boy.

They are ready for solid food at different times.
Is the advice still six months? Or is it four, or three? Or even two? It’s difficult, especially when it is your first baby, to know what to do. Advice and guidance is plentiful, and sometimes contradictory, and that’s before the family gets involved and start making suggestions you aren’t sure are jokes.

For what it’s worth, three babies down the line, each different in their needs, the only thing I feel confident in telling you is that by the time they are reaching out, grabbing your dinner off your plate and stuffing it in their tiny mouths you can pretty much rest assured that they are ready for solid food.

Not every baby finds solid food an easy thing.
Ok, so this is where the specialist knowledge and experience kicks in. Down’s syndrome comes along with low muscle tone (I think I am right in making that blanket observation – I expect there are some babies who do not, so if that’s you or yours, apologies), and this includes the muscles of the mouth. If your baby is bottle fed, they won’t necessarily have exercised those muscles enough to make manipulating solid food and attempting to chew it easy. And that’s before you get to the delayed appearance of teeth.

The smoothness of jarred food can be a great way to start, but the next stage ones can be tricky, as the lumps tend to come along in the shape of centimetre cubes. Typical babies find this tricky too. Getting food to the consistency that your baby can handle is a process of trial and error, and I can recommend a hand blender in support of this pursuit.

If your baby/toddler/young person is having difficulty with solid food, and chewing is a problem, look out for melt-in-the-mouth foods that they can put in and mush away to their little heart’s content, without having to worry. Skips are quite good, as are Quavers or banana.

Rescuing a choking baby is frightening.
It happens. It’s a good idea, when you are starting out with solid food, to find out what to do if you find yourself in this position. If you do, it is important that you act quickly.

Some babies and children have difficulty with liquids too.
Controlling the flow of very runny fluids can be difficult for some young children – despite what you might think, based on the idea that they start off on a liquid-only diet.  Drinking water from a cup/beaker is an entirely different experience and skill.

You can help them get the hang of it by slowing down the flow in a couple of ways. You can hit the shops and invest in every single beaker/sippy cup there is (this is a lot of fun and can also be extended to sandwich and snack boxes with slidy lids that encourage fine motor control) and/or (once you have your sippy cup of choice) you can thicken the fluid a bit.

There are a few ways you can do this; you can get thickeners from the doctor, you can use jelly or yoghurt or you can go the fruit smoothie way which also has the added benefit of keeping everyone nice and regular. Drinking straws are great fun and don’t get blocked by the inevitable chunks of fruit; I found some lids with a hole for the straw.  A brilliant investment that saved me a fortune in carpets.

It is important to keep going with fluids as constipation is very painful.

Even if your child is stuck on purées you can still offer finger food at meal times.
Sharing meal times and enjoying food together is kind of central, culturally speaking, to the family. Eating at a table, together, is the focus for so much learning that goes beyond food and feeding.

I have to admit that I do not especially enjoy messy play at home. It’s just too much…mess. So, food and feeding became a sensory cornucopia. I even have the odd photo hanging around somewhere of baby Sam covered from head to toe in some sort of foodstuff or other.  And then there is the art of conversation, of taking turns, of serving each other and using good manners. These things are learned at the table, as part of the meal, whether you are eating or not.

They feel as emotional about it as we do
Choking is frightening. Being unable to control a drink in your mouth is alarming. There are many early experiences that can mean that a child or young person develops a fear where food is concerned. Allaying that fear means that the adults in their lives need to control theirs. Whether this means going easy on the baby wipes the moment their fingers get a little bit sticky or reigning in on the desire to leap to their side the moment they put something that has caused a problem before anywhere near their lips, that is what you need to do. Being afraid of food can affect a million other aspects of the life of a child, including their ability to get on well at school.

As with so much to do with learning, putting our own feelings to one side in order to benefit their progress is the name of the game, so that everyone can get to where we want them to be.