Don’t let appearances fool you.
Just because Boo will go to a mate’s house, just because he’ll even have a sleepover very occasionally with his best mate or with his cousins, just because he used to be ok when we had regular live-in childcare, just because he has managed to do cub camps, even a school residential, doesn’t mean we can “just get a sitter” if we want to go out. ASD doesn’t work that way.
The last time we tried to go out, Kiwi Dad and I, was around a year ago, leaving the kiddos with Granny was a success. 2 hours. Very local. No expectations on Boo to actually go to bed. However, wonderful that this was, it was preceded with several days of angst, and the poignant phrase “last time you went out was 17th January 2013”… he remembered to the day. That gives some indication of just how Big-a-Deal this is to Boo. Even though he had the maturity to say he wanted us to go out (that empathy thing again, that apparently those with Autism don’t have…), it still came at a huge cost to him.
You see, him going out, that’s ok with the strategies and framework put in place. So he can cope with these situations, such as camps and residentials, with a bit of planning, an acceptance he won’t sleep, even to the level of the next ‘bad sleeper’, frequently a very supportive teacher, friend, or carer, and the reality of some fall out for the next week or two when he comes home when stims, routines, and meltdowns will feature. They take their toll on all of us (so certainly don’t really resemble a break), they come at a price, but they are do-able and often worth it for his self-development.
However, us going out, leaving him at home, that is a lot harder. He expects normality and a fair amount of rigidity of routine and expectation. He can’t cope with a day at school for example if he has any hint that I might be doing something other than returning to home and working there. If I chose to go shopping, or to meet a friend, and he knew, he’d be anxious. Our evenings at home follow a known formula (including us never getting uninterrupted adult time…). It’s a pinch point for ASD.
So to bring a third party in to that, even someone who knows Boo, and he knows, it is rarely worth the stress. We’d love to ‘just get a sitter’, to go out, have some time the two of us, nurture friendships, and just unwind, but the framework that needs to be put in place is hard, before you even factor in the fact we have no local family. It has to be worth the preceding and post-event angst. It has to be worth knowing that for the few days before we’ll get repeated incessant questions on the whys and hows peppered with even worse evening settling (but we have to warn him, thanks again to the ASD). It has to be worth the following days of increased stimming, treading of even more eggshells, and potential meltdowns. In short, it has to be worth us taking on more challenge to our already exhausted selves.
So trust a parent of a child with Autism – it’s not just as simple as “get a sitter”. They desperately want to go out, probably more than many, but it comes at a price. And just because you’ve seen evidence of the child being ok elsewhere, or being seemingly ok on the surface when they put their ‘world front’ on, there’s a huge amount of angst behind the scenes. We want a break, we need it, but it just doesn’t work that way.
And it’d be really great if you could take our word for it, not doubt it, and maybe understand how tough it can be.