When you have a child who is different, you are always on high-alert: hyper-vigilant, swivel-headed. This is not just at the usual times when danger threatens - in driveways, on a wild West Coast beach - but at the other times, the supposedly safe times.
When other people see a benign weekend barbecue, you see a watering hole with treacherous predators circling, your body flooded with cortisol. Because for you, the danger is not so much sharp implements. When your child is different, the danger is other people.
This fear becomes something you learn to live with.
Example: all the other seven-year-old boys are playing a silly sort of informal rugby on a squinty-sunned Friday afternoon next to the tennis club; the mothers are sitting at a picnic table drinking wine, eating rice crackers; but you aren't. Your child is up a tree, he has wet his pants, won't come down. "Sorry, sorry!" you say. Or he has melted down because someone wanted to share his Lego Bionical.
Or yeah, he is hitting someone. "Sorry, sorry!".
You see the looks. Sometimes you say "He's on the spectrum". You use a hand-wavy gesture to convey submissiveness, because you don't want to be cast out. And always: "Sorry, sorry, sorry!"
Soon, you just don't go to those gatherings anymore. You get used to this process, fear, apologies, withdrawal. Birthday parties hold a unique horror. No, your child couldn't eat that, or that. Um, no he can't join in with sports. Yes, isn't it funny he still floaties at nine, because, well, we couldn't do swimming lessons. "The pool noise! It's so echoey and loud." Eventually they give up. "Sorry, sorry."
So if this is you, an oddball struggling on in the normative world, when someone offers a hand, the relief of someone understanding makes you weep with relief. It is not going too far, to say you actually feel love for this person. They might be an austere bureaucrat from the ministry, or a teacher aide (finally, some funding). They look a bit embarrassed and say they're just doing their job. Still, you have to stop yourself from hugging them.
And then, the hand is taken away.
Last week thousands of families with autistic children were told that the programme of support they relied on - Autism Spectrum Disorder courses run by Idea, part of IHC - was being stopped at the end of this month because IHC had just learnt the ministry would not increase its funding. It could not carry on running it at a $500,000 year loss.
The Ministry of Health contract had run since 2013, supporting 3000 families with more on the waiting list.
You might think Disability Issues Minister Nicky Wagner's response would be to say sorry to those families. No. She blamed IHC for being "totally irresponsible" in cutting the courses. Yeah, I don't get it either.
I've had it with saying sorry ... If IHC had a militant activist wing, I'd join it.
Oh, I know, there's never enough money for everything. But I feel obliged to point out this from a government that managed to find $11.5 million for some Saudi businessmen for a sheep farm. They managed to pay $13 million to the Clinton Foundation. They managed to give Peter Thiel a nice fat profit on his Xero shares and I think we can all agree, he really needed a hand up. Sheesh, the government even put out a press release boasting they were spending $1 million a year on an advertising campaign promoting electric cars. Those were essential expenditure I guess.
Anyway, I've had it with saying sorry. No more Baldrick-like apologising. If IHC had a militant activist wing, I'd join it. Because, this is for you, Nicky Wagner and the rest of the smug, middle-of-the-bell-curve folk, who don't realise how easy they have it being born neurotypical.
Because you are the ones who have it wrong.
When your child is different they are characterised by the dominant culture as having "special needs". They are talked about as if they are asking for something extra. "Needing extra support."
This is wrong. It only seems that way to you because you are working off an assumption (invisible to you) that because you are the majority, how you do things is privileged and right. Wanting anything different is demanding more than your share. I guess Rosa Parks was demanding something extra wanting to sit at the front of the bus, so was Kate Sheppard, wanting to vote.
Right now, our education system, our culture, our institutions are set up in a way that supports a certain sort of child and if your child is different you are expected to be oh so grateful, when some crumbs are thrown your way. Well, I'm not anymore. I say rise the hell up.
One day we will look back at this moment and see how unenlightened we were. We will understand that those children are not lesser because they didn't conform to the prevailing social norms, which after all are simply an arbitrary picked-from-thin-air set of judgments particular to this country, this moment in time. In the meantime, all of us need support, connection, care - to be able to be our own weird selves without fear. Just fund the bloody programme Nicky Wagner.