I read one of those open letters yesterday… you know the ones where someone writes to another person – or persons – anonymously, to enable them to get something off their chest? This one was to everyone, everyone that surrounded a couple and their son, who had autism… who was different… who invited stares.
I read it thinking I’d probably cry, but read it anyway. And cried. Because emotions, they resonate. We are taught, from a very young age, how we are supposed – expected – to behave in all situations: at home, in a restaurant, at school… and as our children grow up we, as parents, nudge them – not unlike the flippers in a pinball game – to mould and shape them into acceptable members of society. Who won’t be excluded. Who won’t be laughed at. Who won’t become embarrassed by their own behaviour. But when it comes to Alex, or this other boy… the gloves are off.
We can’t reason with them. Not in the same way.
They show ‘inappropriate behaviour’.
What are his parents thinking?
Alex’s squeaks of delight are loud and can drown what you are saying.
The way Alex flaps his arms and legs to show excitement can knock cans off shelves, food from conveyor belts…
And when he wants something, he really wants something NOW – by whatever means necessary – and it’s all I can do to peel it from his hands.
Sometimes I don’t think people realise, and really why should they, how much effort it can take to get Alex out of the door. I think of – and laughed out loud at – Michael McIntyre’s sketch about getting his children to leave the house but with Alex… it’s magnified. Because unless he is provided for – for every possible need – we can’t relax.
Where is his coat/ shoes/ scarf? Alex doesn’t know and 3 different people in the house may have put them somewhere ‘sensible’.
Which wheels should we take? Buggy, wheelchair or the off-roader? No, we can’t take more than one, there isn’t room
Do we need changing bag/ spare set of clothes/ assisted seat if we’re being brave enough to eat out?
Why has no-one got Alex dressed yet?
We went away to visit family last weekend and it was lovely, and I’m so glad we went, but the military planning hurts my head sometimes. You are constantly planning for every eventuality and you need all the solutions with you as, the older he gets, mainstream solutions don’t always work.
Nappies to fit Alex aren’t sold in supermarkets as he’s past size 7 so you have to take them with you. They are bulky.
Alex can’t sleep in a normal bed as he likes to move about and has no sense of danger so the travel bed has to come with us. It takes half an hour to put up. And half an hour to put down. And Parent 2 has to watch Alex whilst Parent 1 puts it together. I love it, but really, you have to *really* want to go away.
We have to be in the right mood to go out to eat with the children because (after navigating the wheelchair through the narrow door, past people’s chairs, to a table not in the middle of the room) Alex – see earlier point – loves to grab everything in his reach. And whilst I’m delighted he has this skill, it does mean that menus, salt and pepper pots, other people’s drinks… they aren’t safe and need moving swiftly. And so when I’m presented with a small table to eat around… my heart sinks a little.
I’m aware, as I’m writing this, that lots of you will recognise these situations with your own neuro-typical babies and children. And there I think is the crux of it. They will grow and change and mature and these situations will become easier. I have no guarantee that ours will in quite the same way. With the best will in the world I think Alex’s behaviour will always be a little challenging for every day situations and he will grow taller, and his arms and legs longer. Less easy to fit into society than before.
And all of this I wanted to share with you because – and I think you get this – the fact that we have got outside the house at all is nothing short of a miracle some days. The planning that goes into it and the potential for upsets along the way… means we have to really want to do something. So please don’t stare at our little boy as he shrieks, kicks and grabs his way through the day.
We are out as a family.
Doing something ‘normal’.
We are having fun.
And Alex is expressing himself – to the world. And if you don’t get that… don’t be afraid to ask questions. To understand this boy we love. But leave the double take stare at home.
This is the beautifully written letter I mentioned at the outset. George has an amazing dad: