I can imagine

When I am told by someone that they "can imagine" what it is like to have autistic children, the temptation to scream at them is one that I have learnt to quell.  It has taken time and practice, and a great deal of internal monologuing, but it has been achieved.  I have been completely unable to quell the sarcasm though, and really why would I? Often it is the only thing that gets me and many other parents in my position through the day.  Humour darker than the six month winter at the South Pole, dollops of coffee and citalopram are literally my only connecting threads to sanity.  Whilst I will generally reply "hmmm" whilst smiling, occassionally I will let rip. On such occassions, people will enquire if there is "something wrong", and I will tell them.  A condensed version, but I will tell them.  Next, I will start to cry as it feels treacherous to admit that actually, the fact that my kids have autism is the problem, if not every day, then on this day.  Then they back away very slowly, looking slightly concerned for their safety, as I burst into tears.

I suppose, to save my having to cry again, I would like to offer this.

If you see a parent struggling with a child, whether neurotypical, not neurotypical, able bodied or not obviously so, please do the parent a favour.  Shut up.  Say absolutely nothing.  Offer the parent a grin and a raise of the eyebrows, and that expression should convey "fuck me you're handling that well."  Then, piss off.  Leave them be.  If they want help, they'll ask.  If they want to include you, which basically we only do because we are embarrassed and for some bizarre reason want you to think that our kid's behaviour doesn't  reflect on us, respond.  You will be able to tell when we are doing this, and all that is required on your part is a wry smile and an acknowledgement,

When people enquire how I am, I don't say.  Mainly it is because I possibly am the definition of fucked up beyond all recognition, because I don't want to be seen as a victim, and I am fearful that everything will tumble out rather than today's issue, but also because you will say "I can imagine."  The fact is - you can't.

You have no concept of my story, just as I have no concept of yours.  I wouldn't dream of patronising you by saying "oh, I can imagine how hard it is to decide if you're going to buy an ipad."  I couldn't.  Even if I wanted one I couldn't fucking afford it, so why dither on it.  I can't imagine what it is like to have disposable cash to spend on myself, let alone that much disposable cash.  I know how it was when I did have disposable income, but it is so long ago I have forgotten. 

So, here is the thing.  When you ask me if I am ok, and I start to tell you, listen.  Please don't foist your unwelcome platitude of "I can imagine" on me.  It isn't welcome.  I don't want it.  Offer me a shit joke.  Give me a nice smile.  Mush my hair up like you would a kids'.    Buy me a beer.  If I don't want to tell you, be cool about it.

Understand that, when autism is the "problem", I have a very hard time saying that out loud as it feels like a betrayal, and that hurts me very much.  Understand that I will need to give you a long qualifying statement about how great the kids are, and in between if you listen, you will hear how my heart breaks at the wanky shit the kids have to go through; how each rejection of them physically hurts; how being punched in the face by the people you love the most makes you die a little inside; but that you always have to keep on going, through tiredness, past fear, over exhaustion.

When you send your child off to school, you entrust the most precious objet d'art to them.  You expect that you will receive said artefact back in a similar, if not improved, condition.  When you are instead handed back a piss sodden tent that some mental has embroidered the names of the poor unfortunates who have been Rohypnoled into knobbing them, you get a bit bewildered.  It doesn't make sense.  Then you go through the procedure of cleaning and restoring that art every night, every morning, every weekend and holiday, only for it to be destroyed every school day.  You hand them your beautifully made bed in the morning, with its Egyptian cotton matching bedsheets, and get a grotty sweat riddled, fag laden, vodka stained piece of vileness at the 3.15.

When people say to me "I can imagine", I sometimes can respond with "actually, you can't." 

What I want to say, what I want to scream is that, actually, when you are bringing up kids by yourself, it is hard.  When you do that with little or no support from your family (and you choose friends that can't or won't help), it is even harder.  Have ME, it just got a little bit more difficult.  Add in a dubious past for the parent, filled with various unpleasantness that they are fighting to overcome so their own kids don't go through it, you've not increased your chances of getting it right.  Pour in a good helping of needing to be good at what you do, but not being capable, the odds start to stack.  Give your kids a disability, and make it so that that is accompanied behavioural issues that provokes from them the sort of violence that you cannot get your head round, that makes you scared of your own children - whamo.  You can't imagine.  Neither could you try to.

So please - don't.  Just don't.