It’s funny how, three weeks into September, the summer seems like an age away. It is just getting light when I wake up in the morning, chilly when L and I walk up the road, hand in hand, to school. I look at my legs, now that I have pretty much made the transition to long trousers, and wonder if all that fake-tanning is worth it. The freedom we had to set our own timetable is gone, and now we are slaves to the school bell and the alarm clock.
This summer has been one of new experiences. We have tried out new things, visited new places, and Sam (and the others) has taken it in his stride. It’s strange how Sam, my creature of routine, my dresser-in-uniform-on Boxing-Day, has thrown himself into the unknown with gusto – and with remarkably little recourse to teenaged moaning.
Sometimes, you think, when you have a baby with a disability, that you will never be able to do anything ever again. It is your life that is over, given up and sacrificed on the altar of care. There will be no more dreaming of the future, making plans and especially no more holidays. Travel, far from it broadening the mind, becomes something so far out of reach that it may as well be a mirage. The far away only lives on the television, or the internet.
Mind you, that said, we haven’t travelled much mostly because of the cost. Once we had three children, camping became the thing-we-did for a good few years (until the backs-of-the-parents became too fragile to bear it with good grace any longer). Hotels don’t really cater for families of five, we have to book two rooms, add in the cost of travel and the whole thing starts looking like you need to get out a mortgage to go fifty miles down the road.
This year, however, Things Changed. For one reason or another, we found ourselves in possession of the means-to-buy-tickets and some time, and, what had been something that I had vaguely wondered about in a wouldn’t-it-be-nice-to-do-that-one-day sort of way became a plan. And then it became something that, miracle of miracles, actually happened.
We went, all five of us, to Amsterdam. We left the car at home and we went all the way there on the train, had a look round the city, and flew back again. Nobody got lost, nobody was sick or hurt themselves, there were no dramas and only slight boredom was evident by the begging of them all to let them leave the Rejksmuseum. Nobody sat down on the floor, demanding to go home. It was all rather successful, and I am still pinching myself that we did it (and secretly planning another adventure – I thought Venice?) and my confidence both in myself as a capable adult and my family as people who know how to behave in a new situation and are interested in the world around them has risen as a result.
You might think, given that we were travelling with a young man with a disability, that we would go into an awful lot of forward planning. You might think that we had charts and pictures and took time to explain what was going to happen with a symbolled up social story, route maps and timetables, but we did none of those things. I didn’t even buy a guide book and show it to them before we went.
What we did do was chat about it at the tea table. We talked about which train stations we were going to go to and what the money would be like. We laughed at R’s Dutch lessons via smart phone, and wondered aloud what the food was going to be. Nothing formal; nothing other than family chit chat over a friendly meal.
Sometimes, when he is quietly eating, and the other two are dominating the conversation with fast flowing chatter over the finer points of playtime or Pokemon, you could be forgiven for thinking that whatever it is we are talking about has flown over Sam’s head. It’s so easy, when someone is quiet, or quiet because it is part of their disability, to talk about them as if they aren’t there. To imagine that he isn’t listening, because he isn’t looking at me, or joining in the conversation that he isn’t taking part.
It’s so easy for waiting staff to ask us what he wants for his dinner – and such a pleasure when he reads the menu and they find, despite the fact he speaks no Dutch, that he read it, and he knew what it meant and that, actually, he would like the spaghetti bolognese and a glass of milk, please.