Is life fair when your brother is autistic?
Sometimes it’s the trivial things that cause you to think about these things. This happened to me today at the park. ”Push me on the swings, Dad!” pleaded my seven-year old son. “I can’t, I need to keep an eye on your brother.” I replied, before racing off to stop my five-year old autistic son from leaping from the top of a climbing frame. My eldest son dejectedly settled for swinging himself, again. Dad was busy. Dad is always busy, looking after his brother.
This scenario is not uncommon, particularly this summer during the days I have looked after the boys on my own. It’s the unwritten rule of ‘Daddy Days’, as we call them. B’s needs come first. I’m there for both of them, but I’m especially there for my autistic son. Is this fair? Is my seven-year old getting a fair deal?
A recent comment on Twitter stated, “Siblings can be the silent casualty in a family’s fight against autism.” A couple of angry responses took issue with the choice of words such as “casualty” and “fight”, prompting apologetic explanations from the Tweeter. Language choices aside, I think that the comment was valid, insightful and thought-provoking. It’s certainly got me thinking.
My eldest embraced the fact that his brother was autistic better than the rest of us. To him, he was still just his brother. It was no big deal. But he was younger then, and knew no better. As time has marched on, I think the implications have started to become a bit more apparent, his understanding clearer and, sadly, his feelings about it more mixed.
We expect such a lot of our eldest son. Too much really. We expect him to understand autism, when I’m not sure I understand it myself. We expect him to have endless patience and understanding, when I all too often find myself running out of it. We expect him to set an example to his brother that no child could live up to. We expect a maturity beyond his years. He’s the first to get bollocked when they are fighting and the last to get his way when they disagree.
It must be utterly frustrating, when you’re watching TV, to be forced to change channel because your brother has decided the current one upsets him. Or to find that your brother has erased the save data on your favourite video game. How are you supposed to know, at the age of seven, not to mention certain words within earshot of your brother due to the repercussions?
Does my son even realise how much of his life is compromised by his brother? How the places we go, the things we do and the people we see all revolve around meeting his kid brothers needs? I’m not sure ho does, but what worries me is that one day, he will. I do not want him to resent his brother and the impact he has. Already he is showing signs of growing tired of this whole autism thing. I’ve heard him groan at the mention of the word, such as when we’ve explained, “Your brother doesn’t understand, he’s…” “I know, I know,” he interrupts, “he’s autistic.” We cannot let autism become a synonym for pain in the arse. We can’t let it come between our two boys.
Last week’s holiday to Devon opened my oldest son’s eyes to the possibilities of a non-autistic sibling. Also on holiday with us was cousin J. Cousin J is the same age as my autistic son, but of course is much closer in understanding and abilities to our seven-year old. All three of them played well together, but in particular my oldest son and cousin J bonded. Rather heartbreakingly, he has since asked, “Will B ever be like cousin J”, and even worse, “Can I swap my brother with cousin J?” As heartless as that sounds, it’s a pretty reasonable request. Why shouldn’t he want a playmate with whom he can engage on the same level? How do you explain things like this to a seven-year old?
After the playground, I spent time thinking about the shitty deal my eldest gets sometimes. He doesn’t know it- he’s as happy as can be- but I short-change him as a dad. The hours we should spend together and the time we share are curtailed, because of the imbalance of my time I’m able to give him. As a result, my son is yet to master riding a bike without stabilisers. I know it sounds really flippant, but things like learning to ride a bike are a really important rite of passage when you’re that age. And who is going to help him learn, if not me?
And don’t even mention football. When I should have been teaching him to kick a ball, I’ve been running round after his brother. As a result he’s rubbish at football. At a play centre this week he joined in with a game of football. My heart sank. It took the other boys about two minutes to realise he was better off in goal (we all know what that means). As I watched it unfold, I texted my wife:
Don’t laugh. I count these things as failures on my part.
Again, this probably sounds really flippant to some readers, but as a dad, its important. I used to kid myself it didn’t matter. My son is really bright and a total book-worm, which, as an English teacher, delights me. But who am I kidding? Nobody teases you in the playground for being unable to use an apostrophe. But if you can’t kick a ball without falling over…
When my boy should have been playing football, he’s been playing second fiddle to his autistic brother. The silent casualty of our situation.
I know a fair few children in this same situation. I look at these other children and the lives they have, and it worries me a little. Two girls in particular stand out as having a significant part of their lives defined by their autistic younger siblings. They are the second pair of hands that their mother needs to run around after their brother or sister, they spend time not with their friends, but with autism groups and clubs. They get roped into keeping an eye on some of the other kids with additional needs too. My wife asked another boy we know if he’d been on the beach lots on his recent holiday. “Er, not really, we didn’t get out much”, was his reply. It transpired that his autistic brother would not leave their holiday cottage, so that is where most of their holiday was spent. These children are young carers. And I’m not sure that’s what I want for my son.
But in fact, these children give me hope. Without exception, they are delightful, kind, compassionate young people, of whom any parent would be understandably proud. And rather than having their childhood’s stolen, they are learning to grow up to be remarkable individuals. Just like all the carers we know, really. Perhaps rather than coming to resent his brother, it will be the making of him. Perhaps he will grow up more patient, selfless and more accepting of difference. Despite his recent objections, he really is a fantastic big brother. In fact, he’s an all round superstar, if you ask me.
I spend a lot of time thinking and writing about my autistic son, whilst his brother rarely gets a look in or a mention. Perhaps he is the silent casualty of autism. Or perhaps he is the silent hero of the story. I’ll bet that many of you out there have silent heroes- the siblings who, though they have a lot to put up with, deal with it admirably. These children are not fighting autism, they are living with it and embracing it as best they can and learning from it. And helping us to learn from it too.