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Tuesday, 15 October 2013

Aspergers, family life and compromises

I’m pondering, as I look out at our Autumnal garden - with the odd geranium trying desperately to hang onto life - to what extent I should try and force Ethan to fit into our family mould, and when I should just accept that he doesn’t.
My thoughts have been prompted by Saturday night. By sheer fluke, for the first time in months, I wasn’t working. By even more of a fluke, Ethan was off work all weekend too. And just to top off the flukes, there was actually something going on (beyond Strictly on the telly). There was a charity quiz night at the local church hall. Friends happened to be free that night and so we booked a table for four adults and six kids and I, for one, was looking forward to relaxing, having fun and spending time with friends and family.
As we arrived, I felt Ethan recoil. The big, echoing church hall was packed with people, noise, activity, a fuzzy PA system and fluorescent lights. Ethan did his best to make conversation but everything was against him: he was competing not only with background noise but also with questions being blasted out by the quiz master so that his uncertainty about when and how to start and end conversation became even more magnified. Anyway, with his subconscious mind tuning in to all the sounds around him, he found it impossible to even hear, let alone process, what any one person was saying to him. Add to the mix three hungry, over-tired kids and a quiz master jumping around from one thing to another and then back again, with people shouting out and breaking up the order all over the place, and Ethan was, in his words, ‘in hell’.
As Ethan always does, he did his best. He stuck it out for 2.5 hours uncomplaining, trying to communicate at least with the people we’d come with even if he didn’t move from his chair all night. As the night drew on, we agreed we’d go at the end of Bingo but, as Bingo finished the announcement came that the answers were about to be given to the children’s quiz. I, unthinkingly, said to Ethan that we’d just stay for that. But Ethan, having a firm and agreed point of departure marked in his head, could not shift from it. Nor could he take any more of the noise and chaos. He told me firmly ‘we need to go’. I, having had a few red wines and poised to mark Sam’s quiz with him, said that we’d go after the answers to the quiz. Ethan stood up, agitated, and said more frantically that he needed to go, and started putting Oliver’s coat on. I, still with the wine flowing through my veins, said he was making a scene and could he please sit down while we marked the quiz. He refused. People were looking I, despite the wine, began to feel embarrassed. Ethan took matters into his own hands, picked up Oliver, firmly grabbed Sam’s hand and started walking them to the door (with Sam in tears). We had an argument at the door of the church hall. I swore and told him he'd spoilt the night. He stomped off with Oliver, leaving me, a crying Sam and Ava goodness knows where. As I walked home with the kids, five minutes later, I felt a bit remorseful. The night was everything that Ethan finds difficult. Had Ethan been an Autistic child, I would never had subjected him to the noise, chaos and over-stimulation. The fact that Ethan stuck out so much of the evening with good grace and did his best for the sake of us, his family, should have been repaid with my understanding and grace when the time came when he could take no more. I wondered whether I was wrong to expect Ethan to even go to such events. But I don’t think so. We’re a family and we all, to a certain extent, need to do things we don’t want to do to benefit the whole. I don’t think that we should never be able to go to social events as a family because Ethan struggles with them: I think our bond as a family would suffer if we left Ethan at home with an episode of The Big Bang Theory every time we went somewhere like that. And I’d get resentful. 
But I do need to accept that, like a garden, our family is made up of different individuals who need different environments in order to thrive. If I confined the sunflowers to the shade, they wouldn’t flourish: whereas honeysuckle would be quite at home on our north-facing wall. Yet together, they create a beautiful garden. Perhaps the secret to our family blooming is to be a family – to do things together, but at the same time, to accept our differences: to build in time for us each to ‘live’ for a while in our own environments and to notice when one of us is wilting and needs to get out of the sun – and to allow that to happen. 

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