When we first were told that Oscar had autism, I wanted to know what it meant. I had heard of autism, and read about it. In fact, I even studied a module at University about autism, as I found the subject intriguing. I never thought it would ever be relevant to me on a personal level though. You know, these things happens to other people. Not me. Not my child.
So here we are. Nearly two years ago since we were told that our little 2 year old boy wasn’t just speech delayed, that his lack of language had nothing to do with being bilingual or any other reason you rather think of. He was in fact autistic.
And two years on, I still don’t really know what it means. Being on the autistic spectrum is such a vague thing, it could mean that you will be a super intelligent scientist but it could also mean that you never learn to talk, look after yourself, or live independently. We don’t know how Oscar’s life will be in 2, 5 or 10 years time. I hope he will be happy. And content. And supported, if he needs support. I hope he will be able to talk to me. I am not so worried about all the things I used to worry about, the grief I used to feel on a daily basis is becoming less and less, I have reached some sort of acceptance that this is my life now. It’s not what I thought it would be, but it’s ok. Things could be a lot worse.
So what does Oscar’s autism means, to us, to him, to the people around him?
To us it means that we can’t expect him to answer any questions,, if we ask him what he wants for breakfast we need to be in the kitchen, and he needs to see the options available. He can choose between toast and cereals for example. If he doesn’t want any of those options he says nothing at all.
We can’t expect him to get excited about things like birthdays, Christmas or Halloween. Either he doesn’t understand the abstract concept of them, or he just doesn’t care. Tricky to know what is what, when he can’t tell us.
If we take him somewhere new we know that he will be stressed and cope with it by running away to look at locks. And it’s very hard to stop him, because when he gets stressed he doesn’t listen.
Playdates, socialising, interacting is very hard. Oscar can tolerate other kids as long as they aren’t too loud (screaming or crying is the worst!) but he very rarely plays with other kids. He can enjoy things like ‘chase’ but he doesn’t do pretend play at all. It breaks my heart a little bit every time another child tries to talk to Oscar and he just ignores them. Or like if we are invited to a playdate and the other child says “Oscar isn’t playing’.
It means that if Oscar has a really bad meltdown he can physically attack me by scratching my arms, face and neck. It means that there has been times when I can’t keep the boys together in our double buggy as Oscar can, if he gets very angry, attack his brother.
It means endless amount of paperwork, conversations with nursery staff, school meetings…
It also means that all the tiny little things that other parents takes for granted are massive. Yesterday Oscar tried to make me give him another biscuit by saying ‘Please, please, PLEASE’. He nagged me so much, and it didn’t annoy me one bit. I was just so thankful that he was communicating with me.
It also means that he is cuddly, loving and extremely affectionate. Oscar feels everything, a lot. And he shows it. He looks at me, closely, ans says ‘mummy’ and almost shakes with excitement and love.
Being Oscar’s mum makes me humble to life, to other people’s struggles, to how incredibly hard it all can be. But also how beautiful the precious moments are.