Fuck Politeness

One of the things I wanted to mention is that I’m the single mum of a special needs child. I’ve been thinking a bit about the ways in which parents of children with special needs write/talk about their children. It’s like if we want to discuss it being difficult we need to preface it with a long spiel about how precious our child is to us, how much we love them, as if that is in some kind of doubt, as if raising our frustrations puts our status as loving parent in doubt.

Trying to write without doing the same kind of prefacing feels a bit wierd. (And let me be clear that I am not having a go at parents for doing it – I get it, I think it is the same kind of instinct that makes me get apologetic when explaining Autism, because so often people don’t ‘believe’ you) But I guess I’m wondering what would be so wrong with a parent/caregiver talking straight out about how difficult it is in a really direct, matter of fact way. 

I was thinking about it when a friend was telling me about her take on the Steiner view of Autism – they feel that Autistic children are angels in human form. I laughed and said “Well sometimes the ‘angel’ is Lucifer” – but seriously, beyond a quip I do wanna make some points about this. It’s pretty condescending, to the parents and to the child.

I do wanna know if anyone who says this has ever had to contend with a child screaming bloodcurdling screams of rage and frustration for two hours because you insist they go to the bathroom before bed.

I wonder if they’ve looked at their child, and seen the ‘snap’ that seems to happen, the moment at which you know there is nothing you can do to get your child ‘back’ in the conversation, that they have gone to a totally ‘other’ place? I wonder how many of them have experienced a child being unable to cope with physical affection? With flies? Unable to sleep til midnight on a regular basis?

I wonder how many of them are judged on the behaviour of a ten year old in their care who cannot wield cutlery properly?

To step away from my experience (and I will be going back) – try telling some kid with Autism they are an Angel in human form when every day contains so much confusion, so many hurdles and difficulties, when often the cannot understand the words and behaviours of other people or make themselves understood?

I just don’t know how many times carers get to tell their stories without it being turned into a straight to tv midday screened fucking telemovie – I can see it now, I’d be cast as some kinda matyr – an Erin Brokovitch…the scenes with my child would be set to oh-so-soft, heartwrenching background music. And what would happen? Everyone would go “Oh, how brave”.

Of course I would be played by some impossibly beautiful woman with a colt-like figure, a beautiful sadness in her eyes, but obviously not the bags that are there in real life, obviously not the look I *do* get on my face when I have migraines or muscle cramps. That’s not pretty. My son would be pictured drawing, little heroic battler, played by some child with longish hair and big eyes, prone to silent staring (my son is not, and god love him I sometimes wish he would be cos I could do with a few minutes of silence). Of course, as in Ms Brokovitch’s case, I’d be a smart-arse to the bikie with a heart of gold who lived next door, who would fall for me in five minutes, make himself the carer in my place, love my child as much as I did and sacrifice his lifestyle for mine so that I could pursue a glamorous career ending ultimately in the perfect work/life balance where we’d all live together happily ever after. Ask yourself how realistic a scenario this is when there are times *I* don’t even want to be around my son’s behaviours.

Now, no doubt – children with special needs and parents and carers who care for them should be acknowledged for the massive challenges they face and handle. But romanticising in the telemovie way turns it into some kind of hero narrative, which seems to me to take the focus off the issues at hand, of struggle and lack of support, of exhaustion and loneliness.

I don’t know why I feel like this needs to be said, but I do think personal narratives that lay it out there are valuable. I didn’t sleep properly for about seven years. I got continual headaches, back aches, muscle cramps etc for most of that time. I developed anxiety issues after years of lack of sleep and played chicken and egg trying to figure out if they were the result of my life circumstances, or if they were latent issues. The lack of sleep and the frustration of hitting a point where I felt like I was snapping at my child all the time, combined with the pressure of balancing time with him, working to earn money and pay bills and trying to finish my studies pushed me to a point where one night I again couldn’t sleep and I had the fleeting flash of thought “If I killed myself this would stop”. This isn’t a personalised plea for help. You don’t need to call the Department of Community Services. I took that pretty seriously and two years later haven’t had the same thought. The ‘drama’ of that moment isn’t the point.

The point is that special needs kids and their carers do not get the support that they need institutionally or financially, and strong, capable, loving parents are being ground down ever day. The point is also that when we are expected to keep our stories ‘nice’ and ‘cuddly’, when we are expected to sanitise the narrative or run the risk of being branded a ‘bad parent’, a ‘concern’, or being accused of not adequately loving our child, part of the pain, frustration and exhaustion is missed out on. I don’t want to be feted as Erin Brokovitch, but I do want people to understand what it is really like, what it is like to look at a child you have loved with ferocity since before they were born, to look at a child you decided to raise in a positive, loving way and just want so much for their behaviour to stop for two seconds so you could hear yourself think that your blood pressure is through the roof, you are shouting, you lose your temper completely, you know you’re making it worse but you just keep going because the snowball effect of living with never ending frustration and agitation have to have an outlet sometime. I want them to know that the most reasonable, loving, positive parents in the world, parents who delighted in parenting every day, can get ground so far down that they have flashes where they have a sudden urge to slap their child to shock them enough to stop, and have to fight hard not to give into it, or that they get so desperate from lack of sleep that a person who loves life, abhors the idea of suicide suddenly has a flash through their brain of “If I killed myself this would stop” scaring the bejeezus out of them. And my son’s issues are mild on the Autistic spectrum.

I don’t have the solution – I don’t have to, I’m busy coping and working hard at building a succesful life for myself and my son. I’m just telling you what it’s like and that I believe that sharing these sorts of stories has value in clarifying for others what it’s like, and for people who go through it to relate to. I don’t think we should have to sanitise it in order to feel like we are capable, amazing parents. I wrote half this post a week or so ago. I wrote the rest because on a day where I have come home from work sick with exhaustion and feeling fragile, planning my son’s favourite meal which takes forever, he’s lost the plot because he can’t make a rubber band ball, and after forty minutes of continual whinging which was tipping me over the edge I asked him again, firmly to please go into his room as I needed some headspace. So he’s spent a few minutes angrily throwing a ball against a wall in the hallway for five minutes, and now that I’ve asked him to stop, he’s slammed the door to his room and is probably trashing it. Dinner is still on the stove, I won’t get the headspace I needed, and there is no white knight/happily ever after scenario by which a magic wand is waved and all my problems are solved.

Tags: autism, carers, children, Erin Brokovitch, hero narratives, parents, special needs, telemovies