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autism

26

Sep
2014

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In autism

By petrostudio

Parenting autism

On 26, Sep 2014 | No Comments | In autism | By petrostudio

Facebook is great for some things – keeping up with family, friends and colleagues, seeing families and lives of people you otherwise would not, ignoring “friends” instead of de-friending because their political/food/OMGFML posts are too annoying for words, that kind of thing.

What it is not so great for is seeing how much other parents have different lives than you do.

Louis CK is my favorite comedian, by far. He is funny, sure, but at the core of him is a good man who, inevitably, screws up. He admits it, revels in it, and doesn’t shy away from who he is. He talks openly and directly about being a man and a dad, and isn’t afraid to be heartfelt, gross or just mean.

He’s me, with a lot more money and talent and pluck. Or, at least, he’s the best me I’m going to ever get to be.

Louis has a bit from his 2010 special, Hilarious, that I remember and think of whenever I’m having one of “those” parenting days, “Being a parent means you have your back up against the wall all the time, because it’s the only job you can’t quit.”

This is why, once you become a parent, you immediately have no sympathy for stories about pets, when a “night” of drinking ends at 9, and the volume in this bar or that place is just way too loud. (Incidentally, when you have multiple children, you immediately add “stories from parents with 1 less child than yours” to that list, too.) But parents are parents, so you at least have those stories to share with each other. If you can make friends with other parents, that is (a rant for another day, I guess).

Your back is already against the wall as a parent. You do your best for your kids, and revel in everything that they accomplish, every little silly thing they do that, assuredly, no other children have ever done, ever. And you have to share it with the world!

So Facebook – I see families doing things, and kids being kids. Vacations, school days, playing with other kids. Activities and museum visits and clubs and classes. I see all these things, read about the advances kids make and the great things they are doing. And then I realize all the ways my kids challenge that.

Sure, there are similarities. Autism doesn’t make them not children – there’s a lot that’s just 6 or 4 year-old kid – the stubbornness, the zaniness, the need to watch 50 episodes back-to-back of TMNT. But there are a bunch of ways, little differences, that other parents don’t necessarily experience. Those “cute” posts I put on Facebook of my son asking me questions and not listening to my answer? That’s not once in a while – that’s constant. Your kid may not listen because they are being stubborn or just didn’t hear you – but mine? The first two calls just went right through them, didn’t even register in the ear, or the rest of the ambient noise in the room might seem so loud to them that your voice is drowned out. Or, your voice may just mean nothing to them.

I’m lucky. My children laugh, and smile, and hug, kiss, joke, goof, run and play. They love things, many things, and want to socialize with those around them. We have it far better than many other parents of autistic children. But normal kids? Your kids? They often want little to do with mine, because it’s “abnormal” for us to actually just walk up and talk to a stranger.

Ever had a grownup walk up to you and just say, “Hello, I’m Jerry”. It’s weird, right? You nod and smile uncomfortably, and then move away. Well, Jerry wants to be friends, and just doesn’t know that, in our society, making friends is an exhaustive, ridiculous process by which we refuse to speak or often make eye contact with each other, and then reluctantly get to know each other through social circles brought on by school or church, eventually forming a tense but changeable bond with this other person we call our “friend”. Wow, that works out well for us.

But my kids? And Jerry? They just walk right up and say hello. How much of a miserable turd do you have to be to ignore a cute little boy in the checkout line that says hello to you? It happens. And it happens with other kids. And it happens with adults as well. But conversely, you know what? They couldn’t give a shit. And they don’t care if their toy is blue or pink, or if that’s a “girl’s” bike or activity. They just don’t care.

In the end, it’s exhausting to have special needs kids, and we have it so, so easy by many standards. We feel lucky. And I, for one, just try to remember that their brains don’t work the same, and that maybe there’s something to be learned from them, and how they act and interact. This is a job I can’t quit. I can’t even take a vacation from it. And I don’t really want to.

But I would love to not care if my car was pink.

Photo by Paul Garland

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