A couple of weeks ago I recorded a talk for Radio 4. It was broadcast last week. It's the usual stuff I suppose I've become known for - funny stories with a heartwarming twist at the end. I didn't share it with you, and there's a reason for that. When I started all this, I didn't really want it to be all light and fluffy. I wanted the humour to be a way in to some of the struggles, not to mask them. In the Radio 4 recording I also talked about some of the reality - the darker stuff that never gets mentioned. Excessive restraints used against people with autism; treatment and assessment units where individuals are held, sometimes miles from their home, and where some, like poor Connor Sparrowhawk, unimaginably paid the ultimate price. That's the reality of services in the UK at the moment, and I wanted to give a brief insight into that.
An hour before the show was broadcast, I received an email from the producer to say that due to 'political bias' they had to edit out some of what I talked about. You can guess the section that found its way to the cutting room floor. I'm not really being critical of Radio 4 - it was the eve before the General Election, I could have worded things better, and maybe the reference to Guantanamo Bay was a bit strong. I'm saddened though that the abhorrent way we sometimes treat the more vulnerable members of our society is seen as a political message. It isn't. It's definitely a human one.
And I suppose really I'm angry with myself for sometimes painting a picture of our lives being joyous and uplifting when at the moment the truth is far, far from that. Yes there is light, but to counterbalance that, there is much that is dark. I have stated before that I can't really talk about our current situation with the education system until investigations are complete, well at the rate things are going The Boy will be in his fifties and I'll be long gone before that day ever occurs. But if there was ever a reason for starting all this, it was to make the world understand him and his peers better. And as a result, maybe treat them just a little bit better than they have historically. And by not talking about these things, I do a far greater injustice. So, I've decided to share some of what has been going on with you. It isn't all that has happened - far, far from it, but it gives a brief insight into life at the moment, and I hope it gives some balance to the light. I won't name the school concerned, at least not until investigations are finished, but suffice to say they describe themselves as 'pioneering leaders in autism education'.
Just as a bit of background, there were certainly brilliant people within the school. The Boy was doing well, named most improved student at prizegiving, his joy at being with Mr Teacher is well documented throughout this blog. Yet within four months of Mr Teacher moving to another class, The Boy found himself permanently excluded. And five months on with no education whatsoever we are no closer to finding another provision that will take him. There's much that went on during those last four months that are the basis for the investigation, but there's one bit I wanted to share with you. I've chosen it because it's pretty indicative of the problems faced by far too many at the moment. One of the 'pioneering' strategies that was implemented to deal with The Boy was a spithood.
If you're unsure as to what a 'spithood' is, here's an article from the Daily Telegraph showing one in use:
I could go on. And in fact, before I run under my duvet, I will. I don't doubt that challenging behaviour is incredibly difficult to deal with - I don't have all the answers (which is one of the reasons why I haven't been so bold as to tattoo 'pioneering leader in parenting' across my forehead). But how can anyone think this is the right way to treat any child, let alone a child with special needs? It happens more and more - even the language of special needs education has changed over the years to justify the unjustifiable. The term 'restraint' has become 'positive handling'. Seclusion rooms are 'Chill-Out Zones'. It's bloody wrong. By using airy fairy terms, we start to make people think their use is justifiable, even beneficial to the individual, whereas if we returned to the bleaker language of 'restraint' and 'isolation units', maybe people would think twice before using them, and ensure they really are the last minute, absolute emergency intervention they were always intended to be. I'd love to tell you the spit-hood was a one-off, but so conditioned have things like this become I even have a 'Spit Hood Policy' adorning my coffee table, no doubt created to both justify its existence, and to satisfy Mr Ofsted that all is well with the world. As long as we document it, its use must be legitimate, right?
We talk about the impact of violent video games on the behaviour of our children and young people, but what if their time in education has continuously been spent being restrained, manhandled and physically held? What is the impact of that on their behaviour and outlook? Could the system, and the private industry it has created around itself, be instilling the very behaviours its very existence claims it can remove?
The duvet is calling. The naming and shaming of people isn't my style. The school know they've made errors - the very fact they offered me an advisory role in an attempt to buy my silence is testament to that. All I asked for was an apology from them for using the spithood, and their reassurance that they would never use such a device on another child again. They wouldn't do that. Sorry, nowadays it seems, truly is the hardest word. Instead I received a letter apologising for their 'procedural shortcomings'. My brilliant son, and their treatment of him, reduced to an administrative error. Bloody shame on them.
So that's why I've been quiet. It's felt wrong coming here to pretend everything is lovely in our world when it isn't. But we're getting there. It hasn't been easy having The Boy at home constantly, for either of us, not least him. He misses his friends (oh yes, dear system - friendships), and Dad isn't a great teacher. There are days where it feels like we're swimming in treacle. But we're getting there. And this time I know we won't drown. Maybe that's the positive. We've been here before, and I know without doubt we'll reach the other side. And perhaps we'll even both be stronger as a result. But any progress will be despite the system that exists to support him, not because of it, and that's the saddest part of all.
If you want to help change the way people with learning disabilities are treated in this country, you could do a whole lot worse than pledge your support for the LB Bill. It's brought to you by the brilliant people behind the Justice for LB campaign.