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.

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.