With or Without You

I’m sat writing this on the platform of Downham Market station. SP and I are stuck here for the next hour. Downham Market station isn’t the sort of place you want to be stuck at for an hour, but neither is a train carriage full of people when SP is in the middle of a tantrum. So, to save the eardrums of our fellow passengers and to teach SP that there are repercussions for behaving like a brat, here we are.

  
And he was being a brat. There’s a difference between meltdown and tantrum, although both are an outcome of his autism and are both are ear-splittingly loud and unpleasant to be around. Today’s outburst was the result of a trip on the train. We’d done and we’re heading for home, but SP decided he wanted to go the other direction to London (just as he’d done with his grandad the time before). Teatime is no time to be heading away from home on an hour-long journey with another hour and 40 minutes back. I put my foot down and said no. He conceded, got on the train…and erupted as it headed in the direction of home.

And thus we are sat on a desolate station, strong breeze whipping off the Fens, waiting for the hourly service to finish the last 14 miles of our journey home. An hourly service that’s just announced a 20- minute delay! We could have been home by now.

Luckily I have cookie dough bites (thanks M&S – your service to autism knows no bounds!) and SP has a bag of snacks to bide the time. It’s sunny. To be fair, I’ve sat here in a lot worse circumstances (thanks to a rail obsession in the midst of winter).

But it’s proof of the difficulties dealing with the summer holidays. I want the holidays to be nice, full of fresh air and experiences. Thus far SP has enjoyed the grounds of a stately home, the thrills of a theme park, splashing in the sea and flying through the air at a trampoline park.

  
And SP has truly enjoyed himself doing those things. Away from his iPad he’s been chatty and smiley and happy. He’s run, walked, jumped and played.

But no day has been without incident. At the theme park he screamed as we had to leave as it was closing. At the seaside he didn’t want to leave the arcades, even though we’d stood and watched the PacMan demo for two hours and spent a tenner repeatedly playing air hockey. Also he wanted to paddle out to the horizon.he didn’t like being told the sea was too deep. At the stately home he’d taken instant umbrage at the hall itself (something disagreed with his sensory processing) and we ended up in a pool of tears and screaming outside as a stern middle-class woman jabbed at SP, shrilly absconding “Discipline him! Discipline him!” 

  
At the trampoline park the tantrum was Amy’s – the safety video had put her off and she refused to join in. SP meanwhile bounced without care. Go figure!

Husband thinks that I’m being a perfectionist. “You have this idea of a perfect day out,” he said of the stately home trip, as though my expectations were written by Enid Blyton. “You should do things that you know he likes.” But how do you know what SP likes if we don’t try different things? We’d be sat on rural train station platforms all of the time! Hardly fair on Amy whose holidays are already dictated by SP to an extent that is greater than it should be. Fixing on what SP knows he likes would reduce our world further and further. Besides, how do you a judge the success of an outing: by the 90% enjoyment of the 10% abject hell of a meltdown? Although in the midst of the meltdown, it’s hard to be glad you stepped across the threshold of home and you vow never to go out again.

Furthermore, Husband is in no position to judge as he doesn’t join us for our trips and his days spent in charge when I’m at work result in iPad-dependent pyjama days…and then he moans that the kids are too fixated to their technology. It’s undoubtedly easier to stay within the confines of home, but it surely isn’t better?

Sometimes though, it’s not. Sometimes it’s wisest to tag team SP, with either myself or Husband staying at home with him and the other going out with Amy alone. It feels wrong, but also for the best. With SP a day at the Science Museum was a day chasing him around the exhibits, unable to pause to enjoy anything. Without him, Amy and I got to enjoy the V&A and more during a day in London. Sometimes for sanity’s sake it has to be done.

But I’ll keep trying. I’ll keep trying to figure out where might work for us. I’ll always ensure we’ve got supplies to sustain everyone when our plans go wrong. I’ll try to develop a thick skin for those meltdowns, because I’m never going to premeditate them all. Not until I can change the clocks or make the tide shallow enough to paddle out to the horizon.

And I’m going to keep trying to focus on the 90% rather than the meltdown 10%, because then I’ll have the energy to keep going and not let our world grown claustrophobically small. 

Even if it means spending an hour and twenty minutes at Downham Market station.

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