“My son is autistic”
The comments that follow. The comments that always try to make it better, always try to make what you just told them as comfortable as possible. And that is okay, it’s fine. I get it.
“Oh, but..like…high functioning right?”
“What’s his special interest, you know – the thing he is really good at? My neighbour’s daughter has autism but she is a genius. Really good at music”
“He is in a mainstream school, right?”
We so hoped Oscar would be high functioning at age 2.5 years old. But he isn’t. You see, when Oscar was first diagnosed he was so little it was hard to know how his ASD would impact his development. Oscar has progressed, he has, but he is not what you would describe as high functioning. At all. He needs constant supervision. He has very limited understanding and awareness of people around him, of boundaries, of personal space. He has no concept of things we take for granted, like – we don’t go through other peoples’ belongings. We don’t just go and sit on a stranger’s lap. All those things make Oscar a bigger challenge to parent than a neurotypical child or his brother – who still, unfortunately, gets neglected if I am alone with both of them.
I see families with children of the same age who it is getting easier for. Kids who can attend classes by themselves, go to birthday parties without a parent, pop over to the neighbours to play. We have none of that. I still hold a tight grip of Oscar’s hand every time we leave the house as his impulsivity and lack of danger awareness could, in fact, kill him!
I can’t deny that I feel jealous. Jealous of how easy it looks, and of course it isn’t, I know that. We all have different realities, worries and perspectives. Nonetheless, I do get jealous…of family outings where you are all on bicycles. Skiing holidays (not that we could afford them…!), birthday parties….sleepovers. These are things I am not sure Oscar will ever be able to do. Or even want to do? The can and the want is something that can be hard to differentiate at times!
Hey but last weekend, he answered an open-ended question for the first time.
“What would you like to do tomorrow, Oscar?”
First time ever. In 5.5 years he answered a question that had to do with something that was going to happen in the future and we did not even give him choices! That joy beats all the skiing holidays in the world.