Thursday, 26 March 2015

World Autism Awareness Day is coming around again. Why are you still not listening?

When I sat down to write this year's blog for World Autism Awareness Day, the first thing I did was read last year's, which was about asking the teaching community for better understanding and support.

I could write the same bloody article again today, word for word, so little has changed in the past year.

I won't do that, because I want people to keep reading this year's post.

But from now on I'm not going to be diplomatic any more.

I've spent years trying to understand the point of view of people who refuse to consider mine. I've listened many times to the lecture on how these things take time. And I've discussed at great length and on multiple occasions my own personal responsibilities, and the efforts that my daughter needs to make in order to fit in.

But really, now, I've had enough.

I have had ENOUGH.

Enough of talking to people who aren't listening (even though some of them fake it extremely well.)

Enough of asking for the same things, over and over again.

Enough of being told it's my fault, or her fault, or anyone's fault but theirs.

Talking to these people about Grace and other people with autism, and the support we would really like to have, please, is like speaking into a vacuum and watching my words disappear with a silent 'pop' in an airless, unfriendly atmosphere. It's like yelling for hours into a long dark well without ever hearing the responding echo bounce back to me from the bottom of it.

It's driving me crazy. I don't want to do it any more.

So please, you lot, will you just, please LISTEN.

If I was asking for special consideration I might be able to keep my temper a little better. If I, and all those other parents engaged in these eye-wateringly tedious negotiations, were in fact asking for something to which we knew we had no right, we could maybe just about cope with the daily duel.

But we're not, you see. Our children have the same right to an education as everyone else's.

Our children have the right to be included in your lessons and to be supported and taught, just as every other child does. Our children have the right to expect flexibility and kindness and empathy (even while being constantly criticised by rigid, blinkered "professionals" for being incapable of expressing these attributes themselves.)

Why do our children have this right? Because, um, it's the law.

But if that's not reason enough for you, try this:

Our children are ASSETS ( - are you listening yet?) Our society advances when we embrace the non-conformists and the free thinkers and the eccentrics. Our children have a lot to give. They can learn. Help them to find a way to do this that does not insist they first squeeze themselves to fit a template of 'normal' that you've drawn up to your own specifications and which can only result in their failure.

Stop punishing our children if they become too anxious to cope with your demands. Giving an autistic child detention is not going to magically make them understand how important it is to do what you say. It's only going to make them even more anxious, and likely to get it wrong, again.

Stop telling us our children are 'a handful' or 'difficult' or 'playing up'.

Stop telling us we need parenting classes, when you've not had any autism training or failed to understand the training you undertook. (It's not hard to find autism training, by the way. Here's some, right here, from the National Autistic Society which by the way has pages and pages of the stuff.)

And - especially for the attendance officers this one - stop sending us letters about our children's school attendance. Do you seriously think this is news to us? Don't you think we're killing ourselves every day already to get them there? If you want to know what's going on, talk to your colleagues  - yes those ones on the other side of the staff room, say perhaps the SENCo, or the head of year, or the form teacher, or the teaching assistant - before you send us a postal missive demanding that we explain ourselves to you. We've already done that, to every other bloody member of staff.

I know none of this is terribly polite. I know that I'll get told off for being unhelpful. So fine, tell me off. I'm used to it, and so is my daughter. It makes us feel crappy, but we're used to that too.

But this time, when you've finished telling us off, try thinking about what we're asking for. And consider this too: wouldn't you rather just be getting on with your job instead of arguing with us? We know you're all overworked and underpaid. We know you don't want to spend all this extra time and effort on paperwork and phone calls and this-that-and-the-other. We know you resent playing social worker when you're actually trained to be a teacher.

So fine, teach. It's what you're good at, right?

We'll stick to what we're really, really good at, which is parenting our autistic children.

Then you can stick to what you're good at, which is teaching ALL of the children in front of you.

A tip: our job involves tearing up the rule book and adapting our job to best fit the needs of the children we have. It's an approach you might like to consider in yours.

World Autism Awareness Week starts on Friday, November 27 and runs till Thursday, April 2, which is World Autism Awareness Day, 2015. For more information on ways you can participate, click here.

I will be running the New York Marathon in November 2015 in support of my daughter and Britain's National Autistic Society, which provides information, support and pioneering services for people with autism, and campaigns for a better world for them. If you would like to cheer me on, please click here.

Monday, 16 March 2015

Can you swim a marathon?

I used to be able to complete a mile in 9 and a bit minutes on a good day.

For the last year it has taken me about 40 minutes, and 70 lengths of my local swimming pool.

Most of that time, I've felt as though I was competing in the wrong event. Managing to get along, sure, and even do it quite well a lot of the time. But nonetheless I've always still felt as though I was not really doing the right thing.

Sometimes I watch my daughter and I wonder if she feels the same way. She's a fabulous teenager these days. While many things are much better than they were when I used to write on here about her primary school years, some other things are not better at all. Grace has some wonderful days but she still has very tough ones, when her experience of the world seems to be light years away from everyone else's, and the gap between her understanding and everyone else's causes her pain.

On those days I feel that whatever I'm doing for her is not enough. On those days I ask myself how else I can help. It doesn't seem fair that she goes out to a daily challenge and I don't. It doesn't seem fair.

Lately, I have wondered whether the injury that has been kept me in the pool and away from marathon training and fundraising for so long might need to be tested again.

As I have ploughed up and down the blue-lined box of the swimming pool, constrained by the bobbing orange ropes and the other swimmers in front of me and behind me, I have chafed more and more at the feeling of being hemmed in and thought back to the glorious ten- and fifteen-milers of last spring before my knee popped and I limped over the London Marathon finish line an hour later than I wanted to, and all the running had to stop for a while.

When I hug my daughter and kiss her upset away, I sometimes smell the chlorine on myself and it makes me think again: I am not doing enough. I need to get out of the pool and back into the real world of tough training. Grace's days are hard. Mine, though sometimes I find them so, are really not.

So I've taken the plunge. To get out of the pool, that is.

In November this year I'm going to take part in the New York Marathon for Britain's National Autistic Society (NAS), to raise awareness of autism and support my daughter and many more thousands of people like her, and, I hope, to attract many generous donations so that the NAS can continue to provide information and support and pioneering services. So that together we can campaign for a better world for people with autism.

I'm a bit nervous about this, I confess. I don't know if my injury is healed or just keeping quiet until I really test it. But what's the worst that can happen? Living with autism must, I think, feel a bit like trying to swim a marathon.  Or maybe cycle a swim-athon. Or run a bike challenge.

All I have to do is complete 26.1 miles with a slightly busted knee. It's really not much, by comparison.

If you would like to support Grace and me please click here. I'll be posting more regularly on this blog as I get back into training. Thank you for reading, and for helping us both to keep putting one foot in front of the other.