One of my chaps suffers from tactile defensiveness. [translation = doesn’t like the way things feel for current purposes] Because of this, his Birthday Suit is his favorite. [translation = prefers to live life without the trouble of laundry] He is a very lucky boy, because several people have worn his clothes before he does. This means that they are soft. He is also lucky that he lives in California, where signs on restaurants and other public establishments, give advice to similarly minded people: ‘shirt and shoes required.’
It is unfortunate [for us] that he is also hyperlexic. [translation = he can read and understand, more than is common for one of such tender years, for current purposes] Since he is also literally minded, it is difficult to argue with him; “but it dun say nuffink abowt twousers!” This kind of behavior makes a parent hypervigilant too. Turn you back for a moment and all you are left with is a pile of clothes. In the alternative, if luck is on your side, you can play Hansel and Gretel in the Mall, following the trail of clothes, because the hypervigilant, are also speed demons. But I digress.
We bow and leave Karate without the white garb, as this is our first week. [translation = newbies] The bow is his cue, he knows it’s all over. As he stands, he arches back, throws his head up to the ceiling and starts screaming his mantra, ‘no nuniform! denEYEbee NAY ked,’ at fifty decibels. I scoop him up and smile at the other participants. ‘Please let the Karate uniforms appear next time’ I plead to the great uniform dispenser in the sky. Tears course down his face and I’m grateful that as he wipes his nose on my shoulder, his cries become more muffled. Autism for him, means a certain lack of tolerance, amongst other things. His emotions are off or on, and flit between each extreme without warning. I’m fortunate that his speech delay makes him incomprehensible to the rest of the class.
His sister comes to my side, taking pity on his plight, ‘don’t worry, they’ll be here next week, I’m sure,” she says with more optimism that she probably feels.
A kindly man drifts across to us, as I herd my brood towards the door. “He sure loves class.” I smile non-committally and cup junior’s head in closer for the next ‘no nuniform! denEYEbee NAY ked,’’ I slip my hand over my sons, as he grips the neck of his T-shirt to rip it off. His bottom wriggles, trying to slough off his shorts, a superfluous shedding of snakeskin. “It can be tough for them to transition when they’re little,” he adds gently. Fortunately, I am familiar with this kind of American lingo, “yes, he’ll be just fine, as soon as I get him out to the car.”
"No nuniform! denEYEbee NAY ked,’ continues to come in angry staccato bursts, as he struggles to get his arms out of his threadbare T-shirt. I debate whether it is physically possible to remove all your clothing whilst you’re being carried, but I have no personal life experiences to draw upon?
“Yup, he sure is a determined little guy,” he says in the conversational tone of one ‘knowing’ parent to another, as we step in unison. Senior brings up the rear, but has no words, for which I am grateful. His sister joins in, addresses her little brother in a jovial voice, at just the right pitch to travel well, “you know the rule, you gotta keep em on, nobody here wants to see ya butt naked, that would be inappropriate cos we’re not at home.” I swallow hard, feeling my grip tighten on junior’s thrashing 52 lbs. The man’s face sags, his lips part, I avoid his eyes.
Tuesday, November 07, 2006
Generally speaking, and I love generalizations, autistic children are described as being ‘more.’ I never thought about this label until a friend of mine asked me what it meant?
“They don’t’ seem ‘more’ to me, they seem so much less?” she blurted, but that’s because I know her well and I have Rhino hide. I didn’t need to ask for specifics but there’s no harm in checking that I have hold of the right end of the stick? “How do you mean?”
“Well, they’re speech is crap, [translation = delayed, two and a half years for one of them and 18 months for the other one, which means that fortunately for me, they both speak as if they’re about 4, even though chronologically they’re 6 and seven and a half, so it’s more like having twins.] She continues, “they don’t do any sport, can’t even catch a ball, klutz!” [Translation = all American children are judged harshly upon their ability to amuse themselves and others, with a ball, although I am uncertain as to why this should be so important.]
“They look funny, you know, how they walk and all.” [Translation = one of them appears clumsy. The other doesn’t walk, he sort of sparks, as if he’s stuck his fingers in a power outlet.]
“How come he can read and the other one can’t?” [Translation = he’s hyperlexic which means he can read anything, way above his chronological age. The other one could read when he was three, but he sort of lost that ability when the autism really kicked in.]
“Why don’t they eat proper, like, you know, all kids love pizza?” [translation = pizza is poison, well that’s the opinion of one of them, but it’s not surprising because he’s neophobic, which means he’s afraid of food, which means he’s doing a wonderful job of staying alive at all.]
“How come he’s so picky clean and the other one’s such a grub?” [translation = autism is rarely straightforward, one is obsessively compulsively clean and the other is oblivious. It’s sort of hyper-vigilance for one, something, anything, everything, is going to attack him, but the other one could be buried in a pile of manure and not really notice.]
“Why is his face still all pudgy, like a baby’s? It’s just too weird to have a six year old with a baby face.” [translation = he has very little facial or jaw muscle tone because he doesn’t chew anything because he doesn’t eat anything. That’s why it’s so difficult to understand what he says because he sounds as if he’s talking with a mouthful of marbles. I just wish they were grapes instead of marbles, myself.]
“You can’t see his face anyway under all that hair!” [translation = this is a child with tactile defensiveness, like an invisible bubble covering his head to his shoulders and nothing must penetrate that bubble or he’ll bite you, though not literally. Taking a pair of scissors to that mop would be cruel and unusual punishment, and I don’t want to be had up by the authorities because I’m an immigrant and don’t want to give them any more ammunition towards my extradition papers.]
“It’s weird how they never look at you in the eye, that would drive me crazy!” [translation = me too, but eye contact is tough for autistic children, even orientating their bodies towards the speaker can take years of training. Most of the time, if they speak at all, they might as well be talking to the ether. I don’t see it as an insurmountable problem, I can think of hundreds of careers that involve no eye contact. The tech industry will be beating a path to their doorway in a few years time.]
“He’s always clutching something, he’s like a baby with a transitional object, shouldn’t he have grown out of that by now?” [translation = it’s not always the same thing, in fact it changes every couple of weeks, but without it, he’s paralyzed, he has to have it with him like a talisman. It’s a small inconvenience to pay to have a child feel safe, although I’d wish he’d choose bigger things that aren’t so easy to lose, or less of them so that his trouser pockets are permanently bulging, as it only adds to the John Wayne effect.]
“I mean, they’re brothers! Why aren’t they the same?” Ah, because that would be too easy and far too boring.
post script - this was not a 'real' conversation but a compendium of daily comments and queries from the curious.