Tag Archives: SEND

The things you don’t say

I’ve been a very busy girl lately (no change there, then, I hear you cry), much to the detriment of this blog and, no doubt, my family life, as much of my activity has been to do with work (a girl has to live, after all) rather than running around after the kids (something I fully intend to do this weekend, starting tomorrow). I’ve been busy, not at the computer, but out and about, in schools, training events and, yesterday, at the Academies Show at the Birmingham NEC.

I’ve been speaking about inclusion, and what it means on a personal and societal level, for children and the adults they will become. What I’ve said has, in the main, been well received.

You wouldn’t think it, after all, I am used to presenting things and talking before an audience, but, seeing as I tell my personal story, I’ve found it a nerve wracking experience, and yesterday was no exception. The last time I was in the NEC it was for a birthday visit to the Gadget Show; I felt disoriented and anxious and worried that I would take up too much time from the person following me. So I rushed.

Sometimes when I speak I don’t bother with many notes. I’ve thought about and internalised my stories so often that a picture prompt is all I need to get me going. Yesterday, though, was different. Mindful that not only was I representing myself, but Sam, and my employer, I prepared carefully. I planned my talk and wrote it down. I even timed it. A fact which I promptly forgot when faced with a real, live audience.

So I did what I have often done in the classroom; I chopped and changed, moved things around to suit the circumstance (or at least the situation as I perceived it) and, when I stepped from the stage, and looked down at my notes, I realised that, as in so much of my life, there was vast chunks of stuff that I didn’t say, and that I wished, as I drove home and cautiously negotiated the traffic in the darkening gloom, I had.

I wished that, when I talked about friendship, and the importance of making friends with the young people with whom you go to school, I’d told them that although the same set of children came to all of his parties, he didn’t go to theirs. 

I wish that I’d reminded them that the point of a mainstream education for a disabled boy like mine was not that he could be best friends with a woman older than his mum. 

I wish that I’d followed up with my assertion that those of us with disabled children have just as much right to be happy as anyone else – and that this meant living without the conflict with professionals that you are forced into when the state takes an interest in your family life. 

I wish I’d told them how hard it is to ask for help – and the difficulty of having to ask again, and again, and again, because someone’s policy is to save money and keeping quiet about what you are obliged to pay for is one of the ways you do that.

I wish I’d told them about the fear. Of the future. Of change. Of not knowing what is happening or what is going on. Of the difficulty in trusting someone else with your precious child because experience tells you that not everyone sees the world in the same way as you do, and how that makes you appear from the outside.

I wish I’d told them that I don’t care about the process, or even about the policy. That I just want to work to find a way forward for someone I love, and that I am sick to the back teeth of being told I am wrong, that I am doing all the things the wrong way or asking for the wrong things. That somehow, everything is actually my fault.

But these are all things I didn’t say. There are always things you don’t say.

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The talking watch

My dad loves to give gifts. When he was a boy, family tradition says that one of his uncles (he had many uncles, but no cousins) used to have everyone over for Christmas dinner and enjoy himself, as host, by, every so often, appearing with another gift, much to everyone’s delight (in particular, my dad). Today, he likes to carry on the tradition, not at Christmas, but when he visits, and my children greet his appearance with great joy and anticipation, as they swarm around him like cats, winding their bodies around his legs (or at least they did when they were younger), waiting for the inevitable to appear out of one of his many pockets (my dad is a man of many pockets, which is or is not an advantage, depending on whether you are looking for your glasses or your keys or not).

Having a family of grandsons has clearly been a source of purchasing pleasure for him, the father of two daughters. In some ways he has revisited his youth, with candle steam boats that float in the bath, microscopes (complete with accidental sample of grandfatherly blood) and all manner of funny games and build-it kits heavy with meaning for him (and none at all for me, except that I just know he is itching to buy my daughter a lurid make-up set so that h he can declare in sonorous tones laced with laughter, ‘let their make-up be like clowns’ – I began experimenting with make-up around 1985; I’ll let you draw your own conclusions).

Recently though, his gift buying has hit new heights (or depths, depending on your perspective); last Christmas, he bought Sam a talking watch. Now, Sam has been hedged about by timepieces for some time. I bought him a digital watch one year, a great big chunky orange one which he wore with great pride until he lost it (it turned up again when I swapped handbags). There is a teaching clock on his bedroom wall, and for many years, day and night were marked by a light up bunny that slept at night and trotted off into the big, wide world, knapsack on its back to the tune of early morning birdsong and a cock-a-doodle-do as soon as it was day. For all his difficulties in learning, Sam is getting along well with telling the time.

He doesn’t have an obsession with punctuality. Unlike his father, his default setting is generally later, rather than early. If it were up to him, I’m sure he would be perfectly happy listening to his internal rhythms and following them, note by note. No, Sam’s familiarity with the mechanical underpinnings of the daily timetable spring from our efforts to effect change. Sam is, you see, an early riser and we are, as I am sure you understand, heartily sick of being woken up.

It’s pointless trying to change Sam. He wakes up with the sun and who can blame him? During the summer months (I never thought I’d be glad of the dark mornings), with an Easterly facing bedroom, the sun gets up – and so does he.

I’m not sure that the bunny clock ever really worked (despite my jabbing finger and hissed instruction to OBEY THE BUNNY). Asking him nicely to keep the noise down and let the rest of us sleep works up the point when he decides that he is bored, all on his lonesome, and it’s time he had some company, or some breakfast. Sam is, for his sins, a single-minded person with, understandably in the young, a personalised set of priorities.

But the talking watch. This has been a genius gift. After all those years, Sam knows that 7am is the time for getting up, even though he chooses to ignore it and either get up and crash about or stay in bed and crash about until the rest of us, red-eyed and gritty-tempered are forced up. You see, there is no arguing with the watch. It’s time is set remotely, radio controlled from Far Away, and it always tells the truth; it never changes its mind, or its tune. We finally, after all these years, have found the thing that has changed the game.

Because it’s true, you know, that you can’t change the person. Sam is not a mistake that needs to be fixed. He is not someone who can be forced to fit in, no matter how much we might want him to just do as he is told. Bawling at him might provide a temporary respite, but it never works long term. It’s never easy, figuring out what it is that needs to change – and even if you do, it might not be possible; after all, we live in a family and we have two other, younger children. Like teachers in a classroom, needs must be balanced, weighed up, and the best course measured.

Finding the thing that he understands, making subtle changes to the things that surround him, removing barriers, works.  Because it is then, and only then, that he is able to make the change, for himself.

SEND and the law

A very dear and very old friend of mine (as in, we have known each other since we were girls, not that we are Of Ancient Times, despite what I may be told by my middle child) is a lawyer. While I was teacher training, she was ordering up a wig and gown and hurrying around London carrying large boxes. It’s a very different life. At one time, I too was going to be a barrister; I was rather taken with the idea of wearing said wig (and gown) and arguing the case and saying ‘me lud’. A little bit of work experience, however, soon put paid to that idea. Then, as now, I find that I am unsuited to the law.

My friend A is not the only lawyer of my acquaintance, you see. These days I know several, in both a personal and a professional capacity, and they are almost as different to me as it is possible to be – all perfectly nice and lovely, but very, very different.

For a start, there is their commitment to details. They just love them. They love ferreting them out meticulously. (I’m more of a big picture, grand statement, splodge and mess making kind of person; my teachers used to sigh, as I grandly made pronouncements, and failed to back them up with evidence.) Off they go, burrowing into this, that or the other Act of Parliament, surrounding themselves with stacks of books of case law, with a sense of joyful purpose, finding out.

Then there is the letter writing. OK, so I can do a good letter, but I don’t do lawyer letters. There’s something about them that is spoiling for a fight and they just love it. Me, on the other hand, is more often to be found quaking like a jelly and wringing my hands over appearances and getting along. Lawyers, they just don’t care. Confrontation is their stock in trade. They thrive on it, that and their sense of justice.

Advocating is something they do so well, and so comfortably. Me, I do it all the time, but without the anonymising wig and gown, the creation of an official persona, backed up by years of history, I find myself standing on shifting sands, rather than the solid stage of the courtroom. Where lawyers win their cases through the full force of the law (when my sister and I were children, we were fond of playing the game that involved us banging on closed doors, declaring ‘open up, in the name of the law’ in loud voices), I find myself arguing for the spirit, rather than the letter. I’d much rather people just did the right thing.

The thing is, though, that they don’t. Last November I went to a conference on design for disability, and the point was made, again and again, that the laws exist to protect disabled people, and yet again and again they remain broken. Again and again, in all sorts of fields, from websites to coffee shops, we, as a society, fail to treat disabled people properly. And by that I don’t only mean people in wheelchairs, I mean people with learning differences too.

And, as I watch the debates that swirl in education, the ones that touch special educational needs and disability, about the way that we, as a community of adults, treat children, and disabled children at that, I think that we aren’t any better than the businesses who don’t provide disabled toilets, despite our claims to the moral high ground conferred by public service. Current narratives that speak of giving disadvantaged children opportunities brought through education fail to notice that they speak of disabled children too – the ones who seem so quickly excluded, thrown out, and written off as disruptive influences.

The plain fact is that those disadvantaged children we purport to save are the very same as those protected by Acts of Parliament, such as the Equality Act (2010) and the Children and Families Act (2014), not to mention the Teacher Standards and international agreements such as the UNCRC.

And I can’t help wondering just how much longer they will go on being ignored.

 

Afraid

I was chatting the other day,  with some mothers of children with Down’s syndrome; what was it about Down’s syndrome, we were asked, that everyone, the world and his wife, finds so scary?  It’s a question that knocked on the door of my consciousness long before it was posed.

You can find a post on the fear of disability, and Down’s syndrome here.

It doesn’t happen straight away, but once your child is no longer a baby, or a cute toddler, a little one in a too big school uniform, once your boy starts to turn into a man, people’s attitudes change.  The miasma of fear hangs around them.  A fear of male sexuality.  A discomfort with a feminised masculinity; a man who will always need to be helped.  A not-quite someone.

You can find a post about Down’s syndrome and manhood here.

And I have written about the judgement on women, on mothers who dare to have a disabled child. Framed as choice, the discourse has more than a whiff of judgement about it, there is a you made your bed now you lie in it stench.  I have read about, thought about and written about the blame that is hung around the neck of mothers of disabled children.  Too needy. Hysterical. In denial. Awkward. Liars, even.

You can read a post about the inherent sexism present in our schools here.

Mothers of disabled children are set about with rules. In a digital age, we are told we share too much. We place our children in danger; we share stories that are not ours to tell, as if the stories of women, of mothers, are somehow less important, less deserving of a hearing.  In an economic time of debt and austerity, we must both pay the bills and stay at home. We have no need of ambition; our fate is to lay ourselves down at the feet of our children, the price we must pay for bringing to birth a disabled baby.

Today, for work (although I’d have read it out of interest), I read a report into the mental health and wellbeing of children with SEND (that’s special educational needs and disabilities) in schools, and, to be honest, I wasn’t shocked.  Depressed and angered, yes. Shocked, no.  You can read it here.

You see, we know that SEND is intimately connected with poverty and economic and social disadvantage.

We know that having a disabled child puts a strain on adult relationships and many such children grow up with an absent father.

We know that teenage girls are deeply unhappy with the world around them and their place in it, and that this is especially pronounced in girls who don’t, or who feel they don’t fit in.

We know that disabled adults and children face greater levels of bullying than any other group – and disabled girls even more so.

The report paints a picture of a toxic cocktail of powerlessness centred on the experience of women and girls; of individuals caught in the feminised state of disability.  No doubt there will be calls for change, for interventions or plans, for government backed initiatives, citing the well known unhappiness of the UK’s children in justification.  We have a big problem, requiring a big solution.

Except we don’t, not really.  To be kind costs nothing.  To be alert to bullying and to help our children and put a stop to the behaviour that has blighted the lives of so many costs little; some thought, some understanding, maybe a bit of training and a heap of commitment.  Challenging workplaces and demanding societal support for families, so that caring is shared, not carried by one person, might take a bit more, but still.

Without that commitment to change, when you look at it, when you really look at it, who wouldn’t be afraid?

 

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?