It has taken a trip abroad, to Disneyland Paris, to make some of the realities of life with an autistic son more apparent. Once we had left the sanctuary of home (our ‘bunker’) he seemed to become more autistic than usual.
B’s world is fairly structured and familiar. Nursery, home, the local shopping centre, a few favourite indoor play areas and a handful of relative’s homes are the places he spends his time. These are familiar and predictable, as is B’s behaviour. There are places he doesn’t like (the supermarket- I’m with you on that one, kid) that are necessary visits but can be prepared for. I wouldn’t say he dislikes going to new places at all, it’s more that he responds differently to them and we struggle to ‘get it right’ with him.
Disneyland was like this. I should point out that, overall, the experience was very positive. Both boys loved the place and had many fantastic experiences. Once again, the disability fast-pass was a god-send, not only for jumping queues but for getting better access to parades. B has a great enthusiasm for rides and of course the whole place is pretty magical if you’re three, autistic or not.
So what was the problem? Perhaps it was the fact that we were spending every waking hour with the children- no ‘golden hour’ at the end of the day this week. Perhaps it was the claustrophobia of a tiny hotel room with nowhere to hide? This makes it sound like I don’t like my children! I really do like them! In fact, I’d say we went into the experience with our eyes wide open and fully prepared. As tired, hot and bothered as we often were, I don’t think the difficulties stemmed from us as parents.
I think that, outside the comfort zone of our home, B’s quirks, traits and challenging behaviours were amplified. There was a great deal of stimming, lots of contradictory, argumentative talk, lots of running off. Basic behavioural issues. But actually, the problems run a little deeper than these issues.
Something I found deeply upsetting was B’s response to some of the situations he was in. Clearly he spent a lot of his time having great fun, but equally there were many times when he seemed oblivious to what was going on around him. He didn’t ‘get’ it. For example, on the last evening we had a meal with various Disney characters. B’s brother was utterly spellbound by the experience- I have never seen him smile so much as when Mickey danced with him or Captain Hook pinched his nose. And B? There was some smiling going on, but mostly he seemed utterly oblivious to it all. How many times have I heard the phrase ‘in his own little world’? This was so true of his reaction, and difficult to watch. He was as happy dancing with himself as he was with any of the characters. The same is true of the parades. Who knows what was going through his mind, but he did not engage with the experience in any real way. He just seemed to watch it, rather dispassionately.
Being away from home, particularly somewhere like Disneyland, means lots of eating in public places. Breakfast in the hotel each day was an ordeal that is best forgotten. B simply did not cope with the demands of sitting in one place. Being noisy is one thing- I don’t let people staring bother me- but running around in such places is dangerous. Furthermore he ate virtually nothing. It was a similar situation when we had to eat in restaurants on the evenings. He just can’t do it.
Using the ‘fast pass’ meant that we were constantly running into the same people (“it’s a small world after all”), including one mother and her autistic son who looked about fifteen years old. It was hard not to think, ‘is this us in twelve years time?’ Clearly the boy was hugely dependent on his mom. I am afraid of this. And yet, like so many ASD parents I have encountered, she seemed utterly at ease and completely able to cope with the situation. I’m not there yet, but all you people out there who cope so well are an inspiration and give me hope for the future.
Of course, standing next to someone in a queue in no way qualifies you to be able to figure them out. A friend commented recently on my strength and ability to deal with the situation. But she’s wrong. I don’t feel strong and I struggle to cope. I guess I must not appear that way. Who knows what the woman stood next to me and her son have been through to reach where they are now.
When we got home, and the kids were finally in bed, my wife collapsed into tears and poured her heart out about how she feels. It is not my place to disclose things personal to her here, but she did not say anything I have not thought myself at one stage or another. I could find nothing to say to her. I could have offered a platitude like ‘It’ll be alright’ but I would not have meant it. I’d like to put it all down to exhaustion- we were on our knees- but I don’t have to be tired to be thinking the sort of things my wife cried about.
We’re ‘back to normal’ now. Back in the bunker and the safe routines. I’m glad we went to Disneyland; it was mostly great. It’s a trip we can learn from and, for all the horrible bits, it taught us something about being B’s parents.
Tonight, at bedtime, I told B a bedtime story about visiting Disneyland. As I recounted things we’d done, I saw his eyes light up and a smile spread across his face. That is why we went to Disneyland.