A thought occurred to me while catching up on a bit of Autism reading, which I don’t really read much of anymore because 1; it’s depressing, 2; there isn’t much I haven’t already read years ago, and 3; none of it has worked with my kids. But I looked today because you never know, someone may have come up with another miracle diet
Anyways, I realised that most peoples idea of autism is vastly different to the autism we live with. For those just tuning in, we have four children on the spectrum. Thankfully two of them are mild, one moderate sometimes mild depending on the day he’s had, and then there’s Tom. Tom is severe, so severe I’ve only encountered one child with autism like him. He is so severe that they’ve looked for other afflictions, trying to find a reason he is so impaired.
The public face of autism is a beautiful one, often featuring wonderfully intelligent little people who need a hand coping with the outside world. This is great, cuteness gets people putting their hands in their pockets, getting awareness out there.
I don’t have the autism poster child living in my home, and I think that there is a lot of people around us that have no idea what the real face of autism is for us. It often easy not to see it. I’m not saying they choose not to, it’s just that you can form an idea about people by all that they let you see, and few get to see it all. It’s hardcore parenting around here, that means not many house guests.
Quite often I will meet someone who tells me that their autistic child put their clothes on backwards today, and would only eat noodles for dinner, and it drives them crazy. In my head I grab them and scream into their face “your child dressed and fed themselves, that is fucking awesome”. But I don’t act on he urge, because I appreciate that everyone has different levels of crap they can deal with, and no one knows how much they can cope with until it comes along. So I let them tell me, because I know they need to, they figure I get it and I do.
Always smile, listen and respond. You never know someones whole story, that small thing you do may a big thing to them. They don’t need to hear that it could be worse.
For me however it doesn’t work both ways. I rarely let on about what life is like having to change a nappy on a fourteen year old boy, or dealing with the onset of puberty and epilepsy in a boy who will never understand what’s going on with his body, and cannot tell you. Who do you know that would get it? Occasionally I might tell people about the latest thing Tom did that was startling, and I always get this face O_o
Yesterday he ate a pencil.
So if your chatting to me and I looked like I have zoned out, don’t worry about it I’m just smacking you on the nose with a rolled up newspaper in my head. Like I said we all have our own way of coping, this is mine. This doesn’t mean I don’t love you