The Echo Chamber

One of the nicest things, for me, of having my own blog and interacting with people over social media is that, for the first time in a long, long time I haven’t felt so alone.  It’s partly to do with being the parent of a child with a disability, in my case, Down’s syndrome, and something to do with being a part-time, non-classroom-based teacher.  Put the two together, and there you have it.  An isolated creature indeed.

It’s something I never expected, when I started this blog, that I would find myself in a community.  First of all there is the Down’s syndrome parenting community.  There is something about knowing that there are other people who have shared your journey – and who continue to share it – that is tremendously affirming.  We are a an eclectic bunch, and you can find details to some of the bloggers with whom I am in contact here.

Then there is the SEND parenting community in general.  A passionate group of people who advocate powerfully for their children and whose expertise is often collected around the giant of SEND blogging that is Special Needs Jungle.  I am immensely flattered to have been asked to blog for the website – and I appreciate the connection to the wider community.  We all have so much experience to share and so much support to give each other, from our different perspectives.  Together we truly are stronger.

And then, there is the online teaching community.  One of the things I most missed when I went on my extended maternity leave was the company of my colleagues.  I missed the particular way that they talk about things, the way they chat about the massed children we teach, and the individuals that stick in our minds (for a multitude of reasons, including eating paperclips and being sent to the local hospital for x-rays).  I missed the sense of humour, the banter and the puns (no one else seems to pun like teachers, or tweet each other jokes about punctuation marks); the shared purpose and values.

And within that the teacher writers.  People like Sue Cowley, and Hey Miss Smith, Sarah Ledger and others whose blogs I adore for the quality of their writing, the way they make me feel.  The way that there are people out there who not only understand the joy of working with young people, but also of playing with words; how a story just seems to plop out onto the page, fully formed, almost as if the writer had nothing to do with it.

And, like the skin of an onion, once you get going, you can keep on peeling the layers back and finding more and more treasures.  The Primary Rocks crew.  The SEND leaders. Teachers and researchers, writers and tweeters who make me feel part of something really rather special, and really rather important.  From my little sitting room, in front of the fire, I feel as if I am part of something; the disconnects I feel in my flesh-and-blood life are lessened.  It’s like the first time I really talked to my friend K.  We talked about creativity and art and it was like coming home.

The thing is, though, that it has become terribly easy for me to persuade myself that I am in less of a minority than I really am.  I didn’t feel it particularly much when I went to Primary Rocks Live.  The atmosphere at the Wellington Festival of Education was so thick with the shock of the EU Referendum result that none of us were capable of noticing anything else much.  But I was intensely aware of it on Saturday morning at TLT16 in Southampton.

I forget, you see, that the things I know, about special educational needs, about the Code of Practice and about the perils of labelling, the social model of disability and how you actually remove barriers to learning in the classroom so that you can get on teach and they can get on and learn, aren’t actually as common knowledge as I would like them to be.

So I suppose I’ve got a job to do.  I suppose I need to carry on making connections, telling stories and getting SEND out of the silo and into the mainstream.  It’s really nice to have people around me who understand, and with whom I share a great deal, but for me, it’s in danger of becoming an echo chamber; and if that happens I will forget that, actually, carrying on banging on about the same old things still needs to be done.


A message from Heidi

As you know, one if the things that is important to me is to listen to and amplify the voices of the unheard.  So, with that in mind, I am proud to host this blog from Heidi, who has Down’s syndrome and doesn’t have her own blog (yet!).

Hi I am Heidi and I am 21 and I have down’s syndrome which is an extra chromosome and I find that some people are very negative towards people with Down’s syndrome because they don’t understand it and think that we are not equal. 
The things people are saying are making me cry because people don’t value us like they should.
Some people are saying that people with down’s syndrome can’t have relationships but they can have friendships and relationships just like anyone else. I have lots of friends who care for me in everything. I have a better social life than my mum and am always going out with my friends.
Another misconception is that they can’t have a job.

Well that’s rubbish I have a job which I love, I work in a kids hair salon in Leamington and I am loving it! Lots of people with Down’s syndrome have jobs.
People say mean things but I do not lose heart, I also believe that all life is precious and that everyone is fearfully and wonderfully made no matter who they are and no matter what disability. 
Some people are saying that people with down’s syndrome will never be able to live independently, this one especially makes me cry because I live on my own. I have been living on my own for 9 months now and I am loving it and would never go back to my parents home in a million years (well, apart from for my Sunday roasts!).
Another thing people are saying is that people with down’s syndrome can’t learn I went to 2 mainstream schools and gained GCSES in English, french and religious studies, Asdan maths and BTECS in home cooking skills and applied science. Then I did courses in hairdressing and customer service.
Even some nurses are saying negative things about people with down’s syndrome to the mums in the ward they say they will never walk , they will never talk . Most children with DS will learn to walk and talk, they might just take a little longer.  
I started walking at 2 and a half and If you know me you know that I never stop talking till I am asleep, it’s the only time my support staff get any peace and quiet!
I think people should value everyone, we should value people for who they are not for what they achieve.
I don’t know why people are saying these horrible things but together let’s keep spreading the preciousness of life and together let’s change people’s hearts and thoughts and fight for Justice for everyone.
Thanks for listening 

Shared with permission. 

Grown Ups

Today has been a day of new experiences.  Usually (well, for the last four years, anyway), I spend Monday afternoons with Year 5, rattling between classrooms and disturbing lessons and attempting to persuade reluctant children that what they actually, really truly want to do is come out of their nice, warm classroom where they are learning something interesting, and come and sit with me, in a draughty old corridor that smells quite a lot of wee and do the thing (reading, usually) that they really hate because they find it hard.  Today, though, was different.  Today, via the Wonder of the Internet, I watched speeches at the Conservative Party Conference.  The Minister for Education, to be precise.

Now usually, you wouldn’t catch me sitting through speeches at a political conference (I’m not very good at listening to speeches anyway, even if I agree with them; I keep feeling the need to either contribute or wriggle), but, seeing as this was about education (and I am watching the car crash that is the grammar school question unfold before my fascinated gaze) and I am no longer employed to be the spoiler of children’s Monday afternoons, AND seeing as keeping up-to-date with edupolitics is part of my new job, I indulged.

One of the most interesting things, to me, anyway, when I watch Justine Greening, is what she skims over.  She couldn’t get away with making no reference to grammar schools, even though she dressed it up in terms of ‘good school places’ (I mean, who wouldn’t want one of those for their children?), but there was no dwelling.  To my ears, it’s a case of, ‘yes, yes, moving swiftly on, people, nothing to see here’.

And the other interesting thing, to me, anyway, is what she dwells on.  I noticed it the first time I watched her, answering questions before the Commons Select Committee on Education.  She does that thing that people do when they are enthusiastic about something, when there is something that they are really interested in, something that they care about.  She sits up, and she lights up like a candle and she goes all fizzy.

When she talks about FE and apprenticeships, and giving children opportunities to find out about the world of work, and doors upon which opportunity may knock, she loses the pained expression of a woman stuck defending something she can’t quite convince me she believes in; when she speaks about opportunities and learning about careers or jobs that children might not have known existed, she gets that enthusiastic little glint in her eye.  I reckon that’s the reason that straight after her speech she sat down and interviewed a lady from the CBI.

I reckon that’s why, when she talked about a country where anyone can succeed, she asked about the basic skills that young people need in order to participate in the workplace, like the ability to communicate, work with other people, to understand that when a job needs doing, that someone needs to do it and do it without being babysat through the process.  It seemed to me that what they were talking about, two women in positions of power, were the ways in which we help our children to be adults.

And that’s when I start feeling sad, and frustrated.  Because this week, with my facebook and twitter feeds flooded with discussion about Down’s syndrome, I can’t seem to separate the two.  Helping children to be adults is a mighty thing indeed – and they are right, involving employers is a good start (although I would caution against a purely utilitarian view of education – it’s that kind of thinking that makes people start asking how viable a life with an extra chromosome is because of the cost) – but why does it seem to be only some sort of jobs that are worth having?  That only some sorts of careers, like those in STEM, are worth educating for?

Work brings dignity.  It confers adulthood.  But where is the job for my son?  And who will help him get it?




The Body Politic

If it weren’t for the pressure I feel under to be thin, I could almost believe that my body was my own.  I sit, every morning, eyeing my breakfast and telling myself I ought to eat less, be less; every morsel that passes my lips laced with an added helping of guilt.

I never used to worry about being thin.  I never even used to think about it.  All those women, publicly plastered over the pages of magazines, paraded on the telly and in films, naked in newspapers; they had nothing to do with me.  I was young, and strong(ish).  My body was a sign of my power.  It was mine, and I wasn’t reducing it for anyone.

I remember the moment when I understood that it didn’t really belong to me at all.  I was sitting in a blandly lightish-beige office, chatting to a doctor, an obstetrician.  She was older than me, but not by much, and she was dandling Sam upon her knee.  I’d been asked to go in to talk about…something, I’m not quite sure what.  I thought it was probably to do with the mechanics of giving birth, but it wasn’t.  It was about Sam.  There she sat, cuddling my baby, who sat, in turn, clutching at his toes in the way that babies do, and she looked at me straight and this is what she said.

“If I found out that I was carrying a baby with Down’s, I’d have a termination.”

And like that, I knew.

I should have known it before, really.  I should have twigged the moment someone took a machine and looked inside me (and told me to go away and get rid of HALF of the pint of water I had dutifully consumed – HALF!) to see what was going on with my baby.  I should have realised when I stuck the picture, grainy and black and white, to the classroom door.

It didn’t occur to me the first time that someone patted my pregnant bump (I didn’t have to explain back then that it was a food baby), or held shop doors open as I waddled along, or gave up their seat for me on the bus.  It should have struck me more forcibly when I sat with friends and we regaled each other with tales from the delivery room; we cried with laughter over the pop-eyed question as to whether anyone else would care to take a look, or even better, have a root around in there, but it didn’t.  Maybe it was the slight hysteria brought on by a lack of sleep.

Whatever it was, I didn’t realise that my body was no longer a private thing, and that what I did with it was a matter for public debate until that moment.  If I was a responsible person, I would get myself checked, I would allow not only scans, but needles, to enter; a physical consequence of a not-so-hidden judgement.

But this thing, this thing about Down’s syndrome I take particularly hard, because it’s not about clothes or hair or breast or bottle or even whether you are having a baby at all.  It isn’t about buggy choice and what-that-says-about-you, or where you let your baby sleep or who sets the routine – or not.  It’s not even something that affects only older mothers, the geriatric ones, because, you know, risk.

It’s about the way that women’s bodies are continuously policed, and that what is dressed up as choice is really about control.


There’s a TV programme coming up next week, and I have written this post as a way of working out my thoughts before it airs.  I appreciate it is a difficult subject – and one that affects us all.

Spaghetti bolognese and a glass of milk, please

It’s funny how, three weeks into September, the summer seems like an age away.  It is just getting light when I wake up in the morning, chilly when L and I walk up the road, hand in hand, to school.  I look at my legs, now that I have pretty much made the transition to long trousers, and wonder if all that fake-tanning is worth it.  The freedom we had to set our own timetable is gone, and now we are slaves to the school bell and the alarm clock.

This summer has been one of new experiences.  We have tried out new things, visited new places, and Sam (and the others) has taken it in his stride.  It’s strange how Sam, my creature of routine, my dresser-in-uniform-on Boxing-Day, has thrown himself into the unknown with gusto – and with remarkably little recourse to teenaged moaning.

Sometimes, you think, when you have a baby with a disability, that you will never be able to do anything ever again.  It is your life that is over, given up and sacrificed on the altar of care.  There will be no more dreaming of the future, making plans and especially no more holidays.  Travel, far from it broadening the mind, becomes something so far out of reach that it may as well be a mirage.  The far away only lives on the television, or the internet.

Mind you, that said, we haven’t travelled much mostly because of the cost.  Once we had three children, camping became the thing-we-did for a good few years (until the backs-of-the-parents became too fragile to bear it with good grace any longer).  Hotels don’t really cater for families of five, we have to book two rooms, add in the cost of travel and the whole thing starts looking like you need to get out a mortgage to go fifty miles down the road.

This year, however, Things Changed.  For one reason or another, we found ourselves in possession of the means-to-buy-tickets and some time, and, what had been something that I had vaguely wondered about in a wouldn’t-it-be-nice-to-do-that-one-day sort of way became a plan.  And then it became something that, miracle of miracles, actually happened.

We went, all five of us, to Amsterdam.  We left the car at home and we went all the way there on the train, had a look round the city, and flew back again.  Nobody got lost, nobody was sick or hurt themselves, there were no dramas and only slight boredom was evident by the begging of them all to let them leave the Rejksmuseum.  Nobody sat down on the floor, demanding to go home.  It was all rather successful, and I am still pinching myself that we did it (and secretly planning another adventure – I thought Venice?) and my confidence both in myself as a capable adult and my family as people who know how to behave in a new situation and are interested in the world around them has risen as a result.

You might think, given that we were travelling with a young man with a disability, that we would go into an awful lot of forward planning.  You might think that we had charts and pictures and took time to explain what was going to happen with a symbolled up social story, route maps and timetables, but we did none of those things.  I didn’t even buy a guide book and show it to them before we went.

What we did do was chat about it at the tea table.  We talked about which train stations we were going to go to and what the money would be like.  We laughed at R’s Dutch lessons via smart phone, and wondered aloud what the food was going to be.  Nothing formal; nothing other than family chit chat over a friendly meal.

Sometimes, when he is quietly eating, and the other two are dominating the conversation with fast flowing chatter over the finer points of playtime or Pokemon, you could be forgiven for thinking that whatever it is we are talking about has flown over Sam’s head.  It’s so easy, when someone is quiet, or quiet because it is part of their disability, to talk about them as if they aren’t there.  To imagine that he isn’t listening, because he isn’t looking at me, or joining in the conversation that he isn’t taking part.

It’s so easy for waiting staff to ask us what he wants for his dinner – and such a pleasure when he reads the menu and they find, despite the fact he speaks no Dutch, that he read it, and he knew what it meant and that, actually, he would like the spaghetti bolognese and a glass of milk, please.