There is a stack of paper that grows, unbidden, on my worktop in the kitchen. Every time I take a picture of a cake, I have to shove it to one side, for fear that the audience to my culinary successes will judge me for my disorganisation in the admin department. Most of the papers that regularly flutter to the floor, be-spattered with tomato ketchup or other, unidentified splodges, come from school. Not mine, you understand; theirs. With three children at three different schools, and regular bills pertaining to them, the pile does nothing but increase.
I have come to operate what my husband tells me is the Push Down Stack System. As they come in, the letters, bills, permission slips and appointments, they join the stack, only to leave as their urgency demands. Anything still there at the end of term/end of the year is filed. Into the bin. It does mean that I am always a bit, what you might call, rushed, but, there you go. It works for me.
There are some letters, though, that sink, almost unbidden, to the bottom of the pile. Quietly, without protesting their presence, they slip, from urgent to almost forgotten, my reluctance to deal with them hastening their journey. Nine times out of ten these are letters about Sam.
The latest was a curious one. The school actually took to texting to remind me to send it back (ah, after two-and-a-half-years they know me so well), I had delayed so long. It made me uncomfortable, you see, more uncomfortable than I had thought it would, to sign so I put it off; giving other people permission to get involved with the life of my son.
When I first read about the replacements to statements, EHC plans, I thought ‘what a good idea’. Children like mine, with complex needs, more often than you might think, have medical needs too. Often, these needs have a bearing on education, on schools and the decisions they make. It makes sense for the trinity of education, health and social care to work together, because so often, children like mine have needs that span them all. But when it came down to it, when I held those forms in my hand, granting other people, other people who had nothing to do with me, my son or my family, who know nothing about what we believe, about what we hold to be true and right and decent, the right to get involved with decisions regarding my firstborn son, I paused.
There is this funny thing about having a child with disabilities, you see, that is distinctly different to having an ordinary baby, or an ordinary child, or an ordinary teenager (should such a thing exist). From the moment they arrive, squalling and bloody, placed into your jellied arms, it can feel as if they are not quite yours. There are tests that must be performed, observations that must be made, help and advice that must be sought; other people who must be involved. You may not have realised it, but from the moment you get that diagnosis, you are no longer on your own. Public, not private.
For a long time I held them off. I got on well with everyone, I felt that I was in control. But then came school. A while ago, in the course of looking back in order to write something or another, I came across the original paperwork for Sam’s statement application. In there were foreshadowings of the problem of overweening help he experienced, sentences that didn’t jump out at me back then, but leap out now, possessing a power to make me sad and angry at the same time, even after all these years. A whole team of people got together to make pronouncements on how he was going to get/was getting on in school. And that, I thought back then, was that.
Only now, though, since September 2014, it’s not. And while with my teacher hat on I might nod and agree and say what a good idea seeking the voice and the opinions of the child is, my parent heart quivers.
I think about how Sam’s mainstream education was dominated by the involvement of other people, of other people’s opinions, of him and how and what he should be learning. Every moment of every working day time tabled and activitied, supervised, 1-1 attention given. The day I mentioned him having the chance to stare out of the window, distracted from his Maths by the clouds or the birds or nothing in particular, the day I suggested that he, too, might pick his nose in a moment of introspection, I was met with horrified stares. The day they suggested taking him shopping for ‘life skills’, I was confused. Wasn’t that my job? He was only a primary school child, after all.
When we were making the decision about secondary school, the decision was ours and ours alone. Did we take his preferences into account? Yes. Judging by the way that he thought one school was all about computer play and the other was a proper school (boo), we did. (We went for the proper school, in case you’re wondering.) But when he hits sixteen, will this still be the case?
Thanks to the new SEN Code of Practice, I’m not so sure. Those other people will be there again. Those other people, with their opinions and their observations, their questions to my child will be there, ensuring that his voice is heard. I’m very much afraid that I am not going to take this invasion into our private life, our personal space, our decisions made with knowledge of our child, very well.
Team around the child? Perhaps we could all think a little about some space around the child too.