It was Paddy's Day, which I don't much care about any more to be honest, but the steam train in Downpatrick would be running for the first time this year, so we jumped in the car and drove down.
Since there was a parade in the town, we parked at the small station on the outskirts, and rode the train from there into town. We were just in time to board, paid our £20 return fare, (pretty steep for a pair of 6 minute journeys but it contributes to the upkeep and restoration of the museum) and took our seats for the journey. Duncan and Thomas stood by the open window all the way, blinking at the smoke a few times, and starting at the loud whistle.
In town, the parade was just about to start. Gordon stood with Thomas and Lady to watch, and I walked up and down the pavement behind the crowds with Duncan, stopping off to buy some sweets as soon as the packed shop cleared of customers. For part of the time, he rode on my back because I'd not been wise enough to take his buggy. He wasn't much interested in the parade, and was probably a bit stressed out by the loud speakers and crowds. After a while we retreated to a low stone wall set well back from the main throng, and there we happily waited for the others, while enjoying the now not-too-loud music and glimpses of parade components.
Then we made our error. The parade ended and like many, many others, we gathered on the small platform in the town railway station to take the train back to the country station where we had parked. We waited at one end of the platform where it was slightly less busy, but when the train pulled in, we were standing in front of a guards carriage that we couldn't board. Duncan was obviously panicked that we wouldn't get on the train and was desperately trying to push his way past the crowds waiting to get on the 3 small carriages, while I was just as desperately trying to hold him back and settle him down. Eventually we got on an already packed carriage. There was one seat and knowing Duncan wouldn't settle in an aisle seat anyway, I asked Gordon to sit there and take Thomas on his lap. A family of 4 was taking up a couple of seats (that would easily have sat 2 more people if they'd bunched up a bit) and I asked if they minded letting Duncan stand at the window between them to look out. Duncan was distressed by what had happened, and was shouting more than usual. On the way back, I was so very relieved that they journey was short. It was unpleasant. I tried my best to distract Duncan, stop him from shouting, and I had to prevent him getting past me to try to run up and down the aisle where a few other people were standing.
But what affected me more, was that which I can usually ignore; the censure of strangers. Always when we are out, I am aware that my almost 8 year old child is not performing to the accepted norms of a child his age. He often shouts and wails, gets upset when he doesn't get what he wants, or reacts in unexpected ways to situations. Just at the periphery of my senses, I am aware that some people are disapproving, via their looks and posture, but I refuse to acknowledge them. I do not look directly at them and deny them the opportunity to condemn us explicitly. I do not care what they think of my family, of my child.
Yesterday, as I was stopping Duncan from pushing past people on the platform and as he was shouting in the confined space of the train, it was harder to ignore, and a few times I let them catch my eye and show me what they think. I tried and mostly succeeded to maintain my usual composure, the stance that says, this might look bad to you, but we're just fine really, and anyway, screw you.
But I blamed Duncan. I was angry with him when he were walking to the car and I held his hand just too tight and told him off for having been a bad boy on the train. He said he was sorry, said "Don't call the police, Mummy is not angry, Mummy likes Duncan!"
I reassured him, at least a bit, and got in the car feeling thoroughly wrung out. As we drove home, I briefly cried quietly at the whole mixed up situation. I felt responsible for having put him in too difficult a situation, and I failed to handle it well enough.
The censure crossed the boundary on Friday too. We went with friends to W5, and were having a marvellous day. In the afternoon, Duncan was standing in front of his favourite bit, the camera with the blue screen where you can record yourself giving weather reports. I took my eye off him for about 2 minutes to talk with my friend's son about another exhibit just 2-3 metres from where Duncan stood. I was roused by a woman saying crossly, 'excuse me, is this your child' to see Duncan holding the arm of another slightly younger boy, in front of the camera. Duncan was trying to make him play with him, in what he intended as a rough and tumble way, but which had, not surprisingly been interpreted as fighting. The mum was angry, as I would if I though another child was trying to hurt my child. I immediately apologised and said 'he has autism, he was trying to play with him, I'm sorry, are you hurt?' (spoken to the boy). He said no, but that Duncan wanted to fight him. I assured them that he thought he could play with him like he does with his brother. The mum said, 'well OK, I thought he had something' the unspoken end of which was clearly, something wrong with him.
I wish I had prevented that whole thing. I talked to Duncan about it afterwards, trying to explain that he mustn't grab children; it can hurt them and make them sad. I must in future watch him more carefully when he's using that particular device, because he has watched the other children and they always bash into each other and jump about there, so he thinks that's what you're supposed to do.
I wish I hadn't immediately offered up the excuse, 'he has autism' but it was out before I'd stared to think properly.
I sometimes think that we have a little light around us, and outside that is the fog of people who don't know and don't care. Sometimes I suppose my light isn't bright enough and the fog spreads inside our protective bubble. What should I be more worried about, trying to change Duncan to make him more acceptable, or trying to give more people lights to hold with us? By that, I do not mean pity!!!
I do want Duncan to be the best he can. I would love to see him better able to control his impulses and the shouting. But a few more lights in the fog would be nice too.
Sorry you all had a difficult time :(. We went on the steam train at LLangollen a couple of weeks back and Tom got very upset when we had to go out of the pub/restaurant we'd gone into to have something to eat and drink. When we got back to the station (we'd bought our tickets and had an hour to spare) he howled the place down, thinking we were missing the "something a eat a something a drink" bit out. It's the disruption to what's expected that he finds hard to handle. If I tell him straightaway "no" to something he is fine. If I tell him "yes" but then plans change he gets very distraught.
Oh, no! You're not perfect!
Well, in reality, none of us is. All any of us can do is try the best we can each day, and resolve to do better the next time.
And yes, a few more lights would be nice.
What people need to know, and this includes me, is that children like Duncan cannot be expected to behave like typically developing children.
Bullet, I wish Duncan took 'no' a bit better! It still is a bad word to him!
Yeah Joe, shock horror!
I agree with your attitude, say sorry and mean it when you mess up and resolve to try again.
Actually we were out again today and had a lovely day.
Glad today was better :).
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