Tag Archives: Down syndrome

Speak Truth to Power part two

So, having declared that I don’t really do details, here’s part two.  I seem to have come up with a few.  If you have anything to add, please so so in the comments.


These people need to be on SLT in a school.  That needs to be added to the Code.  I am also concerned that the people responsible for co-ordinating SEND in post-16 colleges do not need to be teachers.  It isn’t a purely administrative post.


It seems to me that there ought to be some rules, based on agreed good practise, around about how the funding for SEND can be spent, and some sort of scrutiny from someone that it is having the desired effect.  It seems clear that just spending the money on a 1-1 TA isn’t the answer, and neither is putting the money into one big melting pot.  There is too much misunderstanding of what it is that children and young people actually need and how to go about it.  Or too much half understanding, and too much writing things down on digital paper so that you can be seen to be doing the right thing even if reality says different.


This needs to be looked at wholesale.  We have an inclusive system.  Whatever we think about that we have got to the stage where we know that just putting vulnerable kids in mainstream settings isn’t exactly the end of the story, and we need to make sure that all of our teachers – and indeed all of the people who work in schools, from the secretary to the caretaker – have the knowledge to help them do their jobs in the school community.

For a start we need there to be more than a passing nod to SEND when trainee teachers are learning how to do the job.  Teaching children with SEND is the most difficult and challenging part of our job (in my view), it’s worth spending time going over the main areas at the very least.  I would suggest spending some time at a special school local to them, as well as really good training on reading and ‘what to do when things go wrong’.  I would also strongly suggest that there is specific training on working with parents as well as how to work with TAs and other professionals.

Teachers need to be aware of their legal responsibilities as far as SEND is concerned, as, at present, I’m not sure that all of them do.  I might be tempted to insist that a part of any INSET programme is devoted to SEND and what teachers can do at classroom level.


Where to start here?  Some unified standards and proper training and qualifications would be nice.  Oh.

School organisation

I have learned that there are some children who do not fare very well in mainstream education.  They are just too vulnerable, and their needs are too great.  I know this because one of them lives in my house.  He is my son.  However, while he is incredibly fortunate that he lives in a town where there is a special alternative that suits his needs, I know that this is not the case for many vulnerable children.  This needs looking at.

All our young people need and deserve an education, so we need to look at how this can be achieved.  Not all special schools are the same, and just because there is a special school nearby it does not automatically mean that a child with a specific need will fit in there.


Until I became a parent and my children started at school I didn’t really understand how spectacularly bad schools are at communicating with parents.  And now that I’m thinking about the national picture I can see that this lack of communication is system wide.  Teachers get stuck in next door classrooms.  Schools in the same town have little clue about what is going on in their neighbourhood, or the head teachers might, but not the teachers.  And special needs provision is much the same.  Do mainstream schools know what their special counterparts are up to and vice versa?  Are there mechanisms for sharing good and bad news?

I think it would be really useful to research who are the gatekeepers for information about SEND in our schools.  Who gets the emails?  Who gets the circulars?  How does information sharing – or not sharing – work?  If we know this, then we can have a look at how to make it better and make changes.

Research needs to be much more widely disseminated – we need to look at how to do that effectively too.


Oh, where to start with this one?  We need school leaders who are committed to SEND and making schools a great place for all.  Where they lead, other people will follow.  But to be honest, I’m not sure that it is very wise to wait until those leaders appear out of the ether.  Training for school leaders needs to include SEND, and we need to give people time to talk around the issues.  SEND is an emotional minefield, and people need this reflection time on a subject that touches us all deeply.

All teachers are leaders – in fact anyone who works in a school is –  and they need training not just in how to work with children and young people, but adults too.  I hadn’t the first clue, when I started teaching at age 22, about how to work with a TA, and over twenty years later there is a positively astronomical number of them in our schools.  Training for teachers in their responsibilities towards TAs and what they are and aren’t expected to do would be very useful.

If schools are being badly led as far as SEND is concerned, what do we do to highlight it?  In fact, if this is the case generally, where do teachers turn?   Help us do better.

Thanks for reading.

Hope for the Future

I was asked recently what my hopes for Sam’s future are.  I don’t usually think about them; I have become accustomed, as he is, to living in the moment, responding to the every day. The future, which once seemed so frightening, a black hole into which my fear fell, amplified by scary sounding medical terms, is no longer so distant.  Sam will be leaving school in just two short years.  OK, so I know he’ll be off to college of one sort or another, but there you are.  He won’t be my small boy any more.

So at the future I was forced to look.  And the idea of hopes and dreams, which I so long ago abandoned, returned, changed immeasurably by Down’s syndrome, and yet, funnily enough, not so very much at all.

We want the same things for Sam that we want for our other children, namely, that he grows up with the self confidence to take on whatever life throws at him.  We hope he will find someone to love, and who loves him in return.  We hope that he knows what a loving relationship is, and accepts nothing less.  We hope that he treats other people with kindness.  We hope that, as he grows into adulthood, that he has choices and opportunities to fulfil his own dreams and desires, and that there are people around him who give him the opportunity to do this, rather than imposing their own expectations upon him.  We hope that when he wants to do something that, to us, may seem difficult, there are people around him who can help it come to pass, and that he lives his life with the respect of others and dignity for himself.

Our greatest hope is that Sam’s future remains an open book.


Money and Power

Where does the path go?  Where does it lead?
Where does the path go? Where does it lead?

I am plagued with questions.  Not in the same way that my insatiably curious middle child wants to know everything about everything (especially if it’s about trains or bridges), but there are aspects of Life which trouble me, and make me wonder.

I mean, why is it that my beans are looking so yellow and unloved, when Mr Neighbour’s are romping up his rather expert looking framework thing?  Why does the husband only water his own plants?  Does he have something against my beans?  Is he afraid of the beans?  And, while I’m thinking about it, why is it that I can only ever smell next door’s dinner cooking when it’s fish?  Do they only eat sandwiches for all other meals?

There are many inside domestic matters about which I am confused too.  For instance, and this has been puzzling me greatly for the last couple of weeks or so: where have all the single sheets gone?  There used to be millions of them.  Back in the day, when the boys were little, if it wasn’t a wet bed it was a sicked-on bed; the washing was continuous and I had multiple sets of bedding, but now?  Gone.

Strangely, every single sheet in the airing cupboard appears to be a double one.  All of the duvet covers and pillow cases are there, and all the cot bedding too (it’s bound to come in useful – it’s a teacher thing, OK?), I know this because I have emptied and reorganised my airing cupboard several times in my quest to solve the conundrum.

Have they grown?  Is there a mouse palace, somewhere under the floorboards, carpeted and wallpapered with single sheets?  Are they getting up to no good with the towels and somehow mutating?  Is there something going on in my airing cupboard that I should know about?  Things disappear in my house, usually to turn up, usually somewhere in the sofa, but not these.   It is very troublesome.

A lot of the time I can find an answer to my questions.  Why is Sam awake so early in the morning?  Ah, we appear to have forgotten to pull down the blackout blind.  Why are the children fighting?  Ah, they appear to be hungry.  Why is there pandemonium breaking out at the back of the class?  Ah, there appears to be a bee.  Usually, I can cobble together some sort of an answer.

Sometimes, though, I need to do some work to find out the answer.  Like, go and read some books or something, talk to someone more experienced than me.  Get my phone out and press the google app (that one is especially useful for finding out the names and dates of things that are sitting in my brain, but, somehow, just out of reach).  The more pressing the question, the more quickly I turn to sources of expertise.

Most of the time, the answers to my questions are readily available.  The internet is stuffed with information, some of it useful, some of it not so much; libraries around the world are filled to the rafters with the peer reviewed (hopefully) efforts at answering Hard Questions from  Those With Enormous Brains.

Sometimes they find out something so astonishingly groundbreaking, so counterintuitively shocking that no-one really wants to take notice, because doing so would mean taking a good long, honest, look at ourselves.  Sometimes, the answer involves making some sort of costly change – or any kind of change, for that matter, and nobody really wants to do that.   Sometimes, Those of Enormous Brain find out something so blindingly obvious to everyone else that we all tut, raise our eyes to heaven and dismisses everything else the Brainy Ones ever say ever again, while wondering to ourselves how anyone could get paid to answer a ridiculous question like that when a quick ask around would have done the trick just as well.

And sometimes, what is found out, instead of being shouted from the rooftops, like the latest Down’s syndrome test story, because it is couched in inaccessible academic language, or the answer is so hedged about with caveats that everyone wonders what it was that was being said at all or thinks it’s entirely irrelevant and nothing to do with them (see above), or someone finds something out that it is in someone else’s vested interests to quash, to hide, to gently shelve to gather dust somewhere nice and quiet, that the story doesn’t get told.  It remains secret, hidden in an ivory tower.

But mostly I reckon it’s money.  And power.


Sticking plaster

My daughter loves a plaster.  There is nothing quite like that sticky bit of fabric (it doesn’t matter what colour, what design, waterproof or not) for making everything better.  I’m not quite sure what it is about them that she loves, but they have been an enormous source of comfort since an early age.

It could be visual.  The fact that she can no longer see the cause of her distress in all its gory glory could be the thing.  That plaster looks all clean and everything seems under control.  And of course, the wonderful, magical thing about plasters is that when she takes one off (eventually), blackened by grubbing about doing whatever it is the nine year old girl does in dens these days (I think it’s mostly digging), the wound has gone, or, at the very least, the bit that caused all the tears and couldn’t be kissed better is shrunk, soft new skin instead of scratchy scabs.

For L, the bigger the plaster, the better.  She is particularly fond of those enormous square ones, the ones that cover an entire knee, or an entire elbow with room to spare, no matter how tiny the splinter; I think it’s the drama queen in her that enjoys the attention as she moans and groans her way around the house, limping between destinations, her downturned little mouth begging your sympathy.

Now don’t get me wrong.  I’d hate you to get the wrong impression of my daughter; she is no more an attention seeker than any other nine year old, but I do understand how it works, the ‘special-ness’ that injury confers.  When I was six, you see, I bore the biggest plaster ever stuck to human child.  It covered a scar that ran around my rib cage and along my shoulder blade and I well remember the pain of its removal; my gentle mother, gingerly picking it loose, shoved aside by an efficient nurse who was a fan of the ‘get it over with’ approach.

I never got to show anyone my plaster, though.  Not any of my peers, anyway.  I was far too wrapped up by hospitals for that.  No, rather than developing a fondness for plasters, for me, it was scars.  That scar that zipped me up was my tattoo, the mark that marked me out.  It took years before I tired of explaining, before it faded to a shadow that barely raises comment.  Not that I hide it, it’s impossible in the swimming pool after all, it just doesn’t define me any more; that specialness, that difference.

I got to wondering, the other night, while I was supposed to be sleeping, whether those plasters that my daughter loves so much aren’t a bit like the labels we apply to children.  Like the sticky strips my daughter insists on, these labels, like SEN and PP and FSM and ASD and ADHD are invested with far more than their properties of coverage.  Like those plasters, especially the big ones, or the ones with OUCH written on them in loud colours, the labels are a sign post.  They are a signal that something is wrong, that the person who bears them, or the person who parents the person who bears them, needs special treatment.  Adjustments.  Protocols.

The thing is, though, the thing that occurred to me in those long moments of sleeplessness, is that, unlike the plasters, under which the magical process of healing happens, the removal of which reveals, if not perfect skin then at least a work in progress, the labels we apply to children change nothing.

A child living in reduced circumstances still lives there even if they have PP or FSM after their names.  An application of ADHD doesn’t make a child’s behaviour any less zippy or impulsive.  The parents of dyspraxic children already know their child struggles to organise themselves and their bodies.  Sam had that extra chromosome from the moment he was conceived.  The label, the naming of the condition didn’t actually make a blind bit of difference to the situation.

For all that I know about Down’s syndrome, for everything that label has told me about low muscle tone, or auditory processing or the development of speech and language, it has never, not for one moment, made anything better.  It hasn’t made it easier to put him to bed, or do as he’s told, wash his hair, put his toys away.  It hasn’t made it easier for him to get to school, or me to get him to school.  It hasn’t made it any easier to learn to read.

Of course, I don’t know what it’s like to live in a state of perpetual confusion.  I don’t know what it is to live under the shadow of the unknown.  Neither me, thanks to my scar, or Sam, thanks to all manner of physical tell-tales have ever had to suffer the funny looks or questioning glances courtesy of an invisible disability.

But as much as L loves her plasters, Sam can’t abide them.  For him, the plaster itself, not the wound, is the cause of considerable distress.   If he comes home from school bearing one he isn’t happy until he’s torn it off.  It is only when it is removed that he is all better, no kisses required.

Sometimes, he’s quite profound, my boy.

The Double Edged Sword

I can never really get my head round the need people have to label their children.  OK, so I understand the immediate labels of ‘male’ and ‘female’; after all, gender is one of the first ways in which we categorise the world, but really, those labels, when you think about them are enormously troublesome.  Take ‘girl’, for instance.  It’s an insidious little label.  You wouldn’t think it would make so much difference, but before you know where you are you have fallen into a sea of pink frills and even more pink plastic, of hair bobbles and sit up nicelies and don’t get that dress dirties.  ‘Boy’ is just as bad.  Man Up.  Little Monster.  Beige and navy blue.

The big one for me, of course, is Down’s syndrome.  Even without the banner ‘red hair’ or ‘boy’, Sam has a stereotype to contend with every day; one that tries its hardest to lock him into loving everyone and music, regardless.  I lay the blame firmly at the feet of my mother.  Like generations of teachers before her, concerned for the wellbeing of a child (me), she was at pains to point out that we were in the business of proving everyone wrong, and I maybe took it a bit far.

The thing about these labels, though, is that we need them.  In a medical context, the diagnosis of Down’s syndrome meant that we, baby Sam and I, entered a protocol that checked him out for all sorts of things, his heart, his guts, his thyroid, and, as he grows, his eyes and ears and feet; anything, in fact, that might cause him trouble, or hold him back, or make life more difficult for him than it needs to be is under scrutiny.  I might find the number of appointments a drag, a hassle and a cause for fear, but they are there to ensure his health is as good as possible.

In my professional world, in education, the labels hold the key to all manner of things.    Understanding of why things aren’t progressing the way they ought.  Adjustments, special resources to make mainstream life a little easier, more copable.  Extra help.  These labels, the ones that unlock the treasure trove of additional funding are highly sought after.  Everyone, after all, wants the best for their children, and particularly those with Special Educational Needs.  There’s a tension, a balancing act to be had, a delicate wielding of a double edged sword.

There is always an undercurrent, though, always a story that hardly dare speak its name; a nameless, spectral guest at the feast, or elephant in the room if you prefer, whenever that label is applied, and its name is Blame.

It’s not very nice, is Blame.  He, or she, I can never quite decide, is a nasty piece of work.  S/he stalks about the place pointing the long, bony finger of accusation at whoever is the latest victim of displeasure and heaven help you if it’s you.  If you’re carrying a child and you happen to find out that they have the added benefit of an extra chromosome, BANG.  There you are.  Pointy pointy.  And there is no Get Out of Jail Free Card if the diagnosis is made post birth, either.  Then, instead of the subtle pressure of talk about risk, there is genetic counselling and further tests, but it all comes down to the same thing; just who is responsible, just who is to blame?

The strange thing is, though, that outside the world of the medical diagnosis, out there where most of us go about our business, the Blame Game works in a different way.  That finger, that nasty, long, bony accusatory finger needs no label to attract its notice there.  All it needs is a quirk, or a difference, or those moments when you tear your hair out in frustration that the child just won’t do as it’s told and it starts to wag.

Can’t cope.


Bad Mother.

And before we know where we are, we are fingering the labels again.  Poor child.  FSM.  Pupil Premuim.  ADHD.  Austism.  Naughty.  Even with all the negative stereotypes, the excuses, the lowering of expectations, the effect of over intervention, the censure of the behaviour and not of the child, we riffle our fingers through the pack, to find the one that will stick, to find the one that will let us off the hook.






I wonder what would happen if everyone stopped pointing the finger; if we stopped blaming each other and started working together?

Image taken from Elephant and the Bad Baby by Elfrida Vipont, illustrated by Raymond Briggs.
Image taken from Elephant and the Bad Baby by Elfrida Vipont, illustrated by Raymond Briggs.