I hate people. The only thing I hate more than people are pit bull owners (and MMA fans). But I feel like today was a good day.
I was on site at a client. I had both professional and social interactions with a number of people. I feel like all of them were rewarding on different levels and to varying degrees. I hope these interactions were also rewarding for those on the other end, but I’m not always sure about that.
The human race has kept secrets from me. And I hate it for that. Which is why the world is such a scary place.
I have a son who was diagnosed with a pervasive developmental disorder when he was about three. For those unfamiliar, Wikipedia or any number of sites on autism can provide more details, but the condensed version is, autism looks a little different in each person. Some “show it” more and some less. My son is what is informally referred to as high-functioning. High-functioning basically means parents have a lot of hope that if they do the right things (Applied Behavioral Analysis, gluten/cassein-free dietary regime, crystals, Santeria), the world won’t notice their child is different.
I’m not interested in comparing therapies and remedies. For my son, several years of behavioral intervention was hugely beneficial. For both him and us. Challenging behaviors are practically a thing of the past (we all had a lot to learn here). Receptive and expressive language improved immensely and language acquisition appears to be progressing more normally. He still has some motor issues and restricted interests will likely always be a challenge, but really, his biggest challenge, and the source of my greatest fear, is socialization.
I spend a lot of time trying to narrate my son’s experiences when we’re out and about in the world. I like to think I’m preparing him for a life where he’ll feel comfortable trying new experiences, setting and achieving goals, and most of all, having fun along the way. And yet, I have to wonder what kind of life he has ahead of him.
He is a beautiful boy. He is shy. He is intelligent (scary intelligent). People smile when they look at him. I don’t care to advertise his label, but I don’t hide it either. Sometimes, if occasion arises, I might drop a hint that he’s a bit different or even say outright that he has a label. And they’ll say, “well, he looks normal. I’m sure he’s fine.” And they forget he has a label. They probably even think I’m just some nutso parent who probably has the whole family take antibiotics for colds too. And that’s cool with me if it takes any negative attention off him. But then, some “challenging behavior” comes on. Some quirkiness. Or he’s no longer responding to questions, because he’s switching to off to take a break. And he’s not beautiful to them any more. How will those people deal with him when there isn’t someone around narrating the experience for everyone? When he’s applying for a job? Going to the hospital? … Sometimes, maybe it’s better to *not* look normal. In the civilized world, most people will recognize a person with Down’s syndrome and set their expectations accordingly (not always *appropriately*, but at least they’re trying). I have told my son that he is “different” and that our society has given him a label. It’s not a discussion he has actively engaged in, but I don’t doubt it’s in there. It’s a discussion I want to continue as he grows older and I hope it will help him in understanding himself and how people see him.
But aside from how the world perceives him, I worry about what he is learning from his role model. Can I show him what friendship looks like when I struggle to interact with people (unless I’m drinking)? Can I demonstrate for him what a loving relationship between “neurotypical” people looks like? Looking at his mother and me, I’d say not so much.
I’ve gone through much of my life not understanding the secret language and the hidden code of social conduct. This language, a combination of words, sounds, eyes, lips, hands, shoulders, who knows what else… This code, never spoken, but only broken by broken/defective people like me, like my son. How are we supposed to learn this fucking shit???