The Crystal Hedgehog

I know the new SEN Code of Practice has a lot of problems waiting in store, and @jordyjax has written eloquently about the lost children her primary PRU (pupil referral unit) serves, who nobody seems to know what to do with and the perfect storm that is brewing there, and there are swathes of children who will no longer come under the code who, equally, no one seems to know what to do with, but there is one thing in it that I kind of like.  I like the way that it seeks to bring together the worlds of education, health and social care (whether this will actually work is anyone’s guess).

You see, there is this thing about learning disability that gets my goat big time, and if you’ll excuse me for a few hundred words, I’m going to use the lens of Down’s syndrome (because that’s what I know about) to explain.  Bear with me.

I fell into an interesting conversation via my favourite social media outlet with @lollardfish (David Perry, an academic currently working in the States who also has a child with Down’s) where we bemoaned the two dimensions that children (and subsequently adults) with Down’s syndrome often find themselves in.  Like the concept of femininity, the idea of Down’s syndrome, the way we work it out, describe it, in our attempt to explain it to ourselves, locks us and them in to an unreal state.

There’s the angel story, where children with Down’s exist in order to teach us to love, or to have patience, to slow down, to look at life in a different way.  Then there’s the saviour story, where the child who needs so much saves us from our selfish selves.  And there’s the baby.  Always the baby.  The acceptable image of Down’s syndrome.  Beautiful, fluffy, cute, clickbait.  I find it interesting on an academic level, almost as much as I find it infuriating on a personal one, how close these images relate to ideals of women over the ages; passive, redemptive, flat.  Other.

There is an element to Down’s syndrome, and the stereotype that people hold of it, that continues this narrative, almost without us realising.  ‘He’ll always be with you,’ one old lady told me as she admired my baby (and I thought, ‘oh, blimey, I hope not!’), unconsciously articulating the idea that, somehow, my boy would never grow up.  An infant forever.

But, contrary to public opinion, Sam’s development from a child into a young man, like all the children I have ever known, or taught, is happening and it’s not a linear thing. He likes to play with cars, and yet his voice has broken.  He is increasingly capable of staying up late and sleeping in, and yet at the same time is reading and understanding stories at the level of a much younger child.  He is interested in girls, in his emerging sexuality, and yet he can’t quite tell which ones have grown up and which ones haven’t.  He is a glorious mixed up mashup of a person; the very last thing he is is one dimensional.

But.

While I might see him as multifaceted as the hedgehog that sits on my mantel shelf (if was a gift, and a friendly reminder of my 80s childhood), I can so easily see that other people do not.  Other people, who make working with those with learning difficulties their business can so easily turn him, and people like him,  into a Flat Stanley.  As flat and stuck in a state of permanent childhood as the boy in the book.

My grandma had one of these.
My grandma had one of these.

I first came across the phenomenon when he first started school, and other people did things for him, things that I had spent time and care teaching him to do for himself.  Now that he is in special school I am revelling in blessed relief from outrage, but I know that it isn’t, and is rarely, far away.  I know that his school will only be able to have him until he is 16 (so we’ve got two-and-a-half years left), and then we will have to search again for somewhere else.  Another someplace special.

And I have developed quite a shopping list of the things I want when we find it.  I want to work in partnership with people who believe in my son, not have him in their class out of some sense of civic duty or pity.  I want people to work with my son who don’t sit him in the corner with some crayons or an iPad or a box of cars, who don’t take away his choices by prompting him too soon, or waving his arms about in an attempt to make him sign in assembly before he’s had a chance to react or process his situation, or fetch a ball for him and teach him an altogether different lesson about himself.

I want my son to work with people who understand the idea of agency, by that I mean the decision making we adults take for granted, and how those living with disability have so little of it. It is an accepted state for a child, although what with the continuing revelations of historical child sex abuse, one that we seem to be questioning, that of being excluded from decision making, to be the passive recipient instead, but it’s not for an adult.  I want people to work with him who won’t jump in to answer for him, to prompt him too soon before he’s had a chance to think, to give him the dignity of making decisions wherever possible, as they would any other young adult.  When I think of my son, and the difficulty people seem to have in seeing him for who he is, in looking beyond the stereotypes, I fear.

I want my child, my children, to be educated and grow in a system that is flexible enough to give him the education that he needs, not the one that is the ever bouncing political football, that gives children the time and space they need to grow into the people that they are, not forces them through some sort of standard-person sausage-making machine, or labels them with an inappropriate and limiting stereotype if they don’t fit.

I want to work with, and have my son work with people who see the totality of who he is, who pay as much attention to the development of meaningful friendships as they do to his phonics and spelling.  I want to work with a profession, I want to be part of a profession that isn’t too tired, or too busy, or under too much pressure, and isn’t surrounded by so many competing demands that they can’t see the wood for the trees.  I want to welcome people into his life who are keen to give him the skills he’s going to need as he makes his way into the adult world, be that information about sex or spots or using the bus or paying the bill at the till, because he won’t  be a child forever.

I want our schools, our system, to be human.

 

 

How are we going to make this happen?  Join the debate.

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10 thoughts on “The Crystal Hedgehog

  1. I so agree with you! In our PRU we have time to interact properly and develop the whole child! We tease out their strengths and give them strategies to manage the things they find difficult. We give them space to breathe and grow and often this impacts on families because they get their little people ‘back’. It is so disheartening to have a ‘problem child’….One who has to have a ‘minder’ …..who can never be trusted with responsibility…..who never gets considered even to play the lead in the Xmas play……where the phone call home is a cause of dread….Relationships often break down due to sheer exhaustion. Yes we are here for behaviour but we can heal too.

    I never see my job as one or two dimensional…we take a holistic approach looking to address the needs of mind body and spirit….I have become skilled in engaging all the relevant agencies in order to do that and so I too applaud that aspect of the new SEND.
    Time will tell if we can make it work together.

    1. Ah, Jax, that comment about getting your child back. That brings a tear to my eye and a lump in my throat. It’s what Sam’s school has done for us, and him.

  2. “I want to work in partnership with people who believe in my son, not have him in their class out of some sense of civic duty or pity”…me too! Professional love – that’s want I want for my children, it’s what they all deserve. I want them to be loved and respected for who they are, to be able to harness their strengths and celebrate their differences, to be supported in the areas they find more challenging and not punished or made to feel inadequate for failing to satisfy normative criteria and jump through meaningless hoops that take no account of different skill sets and alternative learning styles…just saying!

  3. Special school has been the most fantastic experience for my son after several difficult years in mainstream. However I am less concerned about the future than you as there is also great provision at two local FE colleges for when he has to leave school. I work at one of them and have seen first hand the personalised education they provide focussing on individual needs, life skills etc. Have you investigated this sort of option for Sam?

    1. I think that’s what we will be doing when the time comes-eithe that it the National Star College, which is close to where we live. For the moment I am doing a bit of treading water and enjoying the successes he now has 🙂

  4. “I first came across the phenomenon when he first started school, and other people did things for him, things that I had spent time and care teaching him to do for himself.”

    Same here, but differently. At nursery, we were a pain to gloss over and/or ignore as son’s disability is invisible. The little girls whose was very visible was collected up and cuddled by staff like a favourite china doll.

    Later, school came with one of those Velcro TAs. I remember one conversation so clearly, I was saying how son will happily wrap any available adult round his little finger. Oh no, not me, she stated, while packing his school books away in his bag for him…..

    **sigh**

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