I can’t talk truthfully about caring – but not doing so is a problem

I have an autistic child. We’ve lived a sort of stable life, where many friends weren’t aware that I cared for a disabled child. I still get involved in things – much less than I used to, but I do some regular events, I go out for coffee with people, I can try to pitch for work and so some small projects. I’ve written a book (no plug here, it wasn’t very good, but I tried.) It seems so nice and quiet.

It is impossible to write about what I do to keep it like this, because I just do. I don’t want anyone’s pity or admiration. Things at home are usually harmonious, we can have a laugh, that’s good enough for me.

Right now, post  Brexit, there is change in the air. My status as EU citizen suddenly doesn’t mean I can live and work here. If we can’t stay here, the logical conclusion is to move back to Germany, or elsewhere in the EU. This is fine. Who would want to live somewhere where they are second-class citizen, or a bargaining chip? I came here because I felt equal. I don’t any more.

My child doesn’t do change. My child doesn’t even manage small changes right now. Brexit was a huge shock. Everything that is happening in the world this year is a huge shock. Trump, Orlando, bathroom bills and subsequent bathroom bombings (in case you thought violence against trans people was just online.)

Yesterday I was careless and started discussing how healthcare would work in Germany.

My child had the first not-quite violent reaction to me in years. My child then went into a depression spiral, stayed in the room, slept for a while, came out and stood in the living room, repeating ‘I want to die. I want to die. I can’t handle a move. Everything is getting worse all the time. I already wanted to die 5 years ago and now everything is worse. I want to die.’

I calmed things down, we ordered fish and chips and J went back to watching videos about Thorium-based nuclear power. While we were watching our first Deliveroo order being cooked and delivered, J showed me notes taken while watching the talks and told me about Liquid fluoride thorium reactors, why they are better at producing energy than the technology now used as standard for the simple reason that it was better at also being weaponised. It was really interesting, at one point J googled the periodic table to prove a point, and was so animated that it hit me how typically autistic this particular behaviour is. I cried a little.

I then – and this is the main reason for this post, because it was rare – wrote a post on Facebook about what had just happened. I avoid Twitter because in general there is nothing worse for my child than to see me talk about them, and Twitter is totally open. (I know, this is a dichotomy, because I’m just doing exactly that. But hear me out, there’s a point to all this. I think.)

Screenshot from 2016-07-10 07-04-50

SUCH an outpouring of love and empathy. (One German still managed to say ‘your child was probably just hungry.’) You can’t say ‘you literally have no idea what you are talking about’ when people think they are helping, can you?)

I then wrote to a friend who had messaged me.

The funny (?) thing is that my life is always like this, has been since I moved here, but I only rarely bother to put it into words that people can get. Just enough hardship but not too much. If I wrote the logical conclusion – that if I pushed through any change, even the smallest, even if it wasn’t my decision, my child would be not just non-verbal but also violent – that would be too much and people would lose the good, warm feelings of empathy and instead wonder why I do it to myself. That’s why I never usually post stuff like this, not because it isn’t happening.

 

So we’re finally getting to where I’m talking about why I can’t talk about what it’s really like and why it’s strange to see people who do. There was another one of those in the Guardian yesterday which comes very close to the edge. How do you write something like that and then pitch it to a national newspaper? Why, what’s the motivation? ‘Here, take my horrible suffering and publish it.’ I don’t get it. But then I’m not a journalist, I guess.

For me, social media is great. But I still don’t use it to share what it’s like when I’ve just prevented, or dealt with, another crisis. I need to recover. I shut down, I don’t communicate. It’s too close to the bone and I don’t want to sound like life is terrible all the time. I want people to still think of me as an individual, not just a mum and carer. I still want to work and have an independent existence. Maybe that’s selfish.

I don’t think I need immediate rescue, but I still am unable to talk about the heavy lifting I am doing to keep our lives stable most days – and some days I’m unable to talk to people full stop. It doesn’t help friendships, people just think you don’t care if you don’t show up. Even when I feel alright, there is a constant need to balance the things I want and need to do – the lack of networking is killing me on the work side, I can tell you that – with the knowledge that things are better at home if I’m here. I err on the side of staying home. I can’t keep explaining – What’s wrong with my child? Would this help, would that? Not really but thank you – so friendships and relationships break. Hence all the knitting.

Anyways. In the meantime, I keep trying to manage. I’ve cancelled my annual week of holiday from my 24 hour caring job (my friends are in Zadar right now, I can recommend it, it’s nice) because things aren’t stable enough and we have a new health scare too.

I will stop talking about moving, and keep looking after myself as well as I can. But who knows, with all the changes in the last two weeks, who’s to say outside developments won’t have a massive influence over what I can and can’t do.

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One response to “I can’t talk truthfully about caring – but not doing so is a problem

  1. I actually think you can and SHOULD say “you literally have no idea what you are talking about” when appropriate. You can soften it a bit – “I know you’re trying to help, but” – but surely someone being so very unhelpful needs to learn. They need to be reminded that social media provides only the illusion of knowing what’s going on in someone’s life, certainly not enough to dish out advice or comment. (Like, you know, what I’m doing right now. Oops?)

    Btw as for the Guardian piece – I just think different people have different ways of dealing with suffering. I absolutely get yours. But some of us veer more towards needing to talk and talk and talk about whatever it is, wanting to make people UNDERSTAND as much as to express the pain, so going public can reasonably be seen as both cathartic, and a public service? Maybe? I haven’t read the piece yet. And my life and woes are pretty pedestrian. I can’t say how I’d deal with real hardship. I think I can understand both instincts, though – going public, or keeping it private. Just different ways of coping.

    Thank goodness for knitting. I don’t know how you’re supposed to cope either. I hope you do.

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