I most certainly am. Or usually I am, quite a chatterbox, but lately I’ve had my "jaws" strung together with elastic. 3 months now, and believe me, it’s no laughing matter, even if I could open my mouth to do so. Dis abled? What a politically charged term. But I have the medical charts to prove it. Has my quality of life been impaired? You bettya! Liquid diet and no bits, is about as boring as you can possibly get.
My condition is a temporary one. Furthermore, I only have myself to blame, as the jaw surgery was a choice, self induced. Maybe I should have had brain surgery first to forestall such foolishness? For others, their circumstances did not involve an element of choice nor is it temporary. I could give you a list of my chums over the years who are categorized into this or that little box in a wide variety of manners, from Thalidomide [that dates us] to hearing impaired, but I’ll stick to the spectrum that is closer to home.
Before surgery, when I chatted to my American pal, we would yabber away as I slipped into what I believe to be, a Mid Atlantic accent. We understood each other completely, apart from the odd word hither and thither. When my Irish chum joined us, after introductions, we chattered away, easing into different accents, faster and faster. We left my American pal on the side lines bewildered, as the accents thickened, to cut her off. Speech is one thing, but to make yourself understood is quite another.
For the moment my speech is virtually incomprehensible, without great efforts in the field of enunciation. Still, it gives the stiff upper lip a good work out and ensures that at least part of my stony facial expression has a little animation. My ego benefits tremendously, as there's nothing like a dose of social embarrassment to whip your pretensions into place. Currently, when I attempt speech I generally only achieve 'spit.' This is made all the better if the person you spit on, is a perfect and innocent stranger. It is more or less guaranteed to make you a social outcast. But in the great scheme of things, it is a mere passing trifle, barely a wrinkle. [translation = doesn't even reach one grey hair status]
The spectrum that I have some experience of, is autism. It’s not direct personal experience, because last time I checked, I was considered perfectly ‘normal.’ [translation = by some] I only have vicarious experience of autism through my two sons. My second hand view is a warped one, with a limited perspective due to my own ignorance. [translation = old dogs, new tricks and lots of grey hairs]
Some autistic people also have language difficulties. Some do not speak in words. Others have a limited vocabulary, or have the words but an inability to find them or speak them. There are also a group with verbal skills that are so enhanced that they deceive the listener. The complexity and variety of this one element of what can be comorbid with autism, defies description. It is often the most key element that the world at large becomes aware of, because communication is considered a fundamental factor of human existence.
My sons' autism is also the non-verbal kind, or at least it was when they were first diagnosed. Now don't get me wrong, it is a truly wonderful development for any child, the development of language that is to say. If you happen to be non-verbal, some people might be forgiven for describing it as miraculous when those first words emerge. Speech, if it happens, comes naturally to many. For others, speech has been carefully developed, encouraged and teased from a child by a speech pathologist, an expert in the field and a dollop of chemistry between the two. Sometimes, this may take many years. Silence is broken by a syllable here and there. Sometimes it fades away and dwindles, for no apparent reason. At other times, it comes in little gushes. The ebb and flow of the verbal tide would best be described by just such an expert.
For right now, the speech that my boys have at their disposal is of an entirely different magnitude than I ever hoped or anticipated. What does it sound like? You probably don't want to know? To begin with, it is very loud. They learn to modulate their volume but for now there is no 'off' switch. A significant percentage of their words are now formed into little sentences. They are repetitive in nature and usually come in sets of three. They usually rhyme or have a definite pattern or rhythm. The majority of verbalizations that fill the intervening periods are sounds,sucking and blowing noises, single syllables in an endless slew of 'noise.' But it's all good practice, exercising the muscles, snapping the synapses. Their sister calls this kind of constant sound 'motor mouth mode.'
Many people find it difficult to listen to them. Their audience tunes them out as the 'noise' is considered jibberish when they're in 'motor mouth mode.' It is difficult to understand what they say. Usually it is only adult who have the patience to listen. There is a smidge of perseveration in there and a tad of OCD on occasions. I could go on but I'm sure that you get the general idea. If I mention that whilst one is in motor mouth mode, the other repeats every word sotto voce [translation = echolalia] you will understand the stereo system that we enjoy.
This very morning, the boys caught me cuddling a cat, Rascal, one of the two. I was admonished for showing favouritism, stroking one but ignoring the other, Unis. I remedied the situation and spat in Unis's direction, "guess what? I can fix that. Come on then, you big fur ball, come over here and have a cuddle!"
Innocent enough? The sort of thing anyone might say at 5:20 in the morning. The boys! They spent the next forty minutes repeating “Yur a big fur ball! Guess what? Yur a big fur ball! Guess What? Yur a big fur ball! Guess what?” interspersed with guffaws of laughter. [translation = that echoed]
It is not speech that's the issue. It is the ability to communicate in whatever manner is available, that makes the difference. The heart of the matter, is the ability to tune in to whatever that manner might happen to be.
If you are in need of further comfort "this," if you missed it may give us pause. What long way "we" have come. Best wishes and cheers!
Sunday, April 29, 2007
“Tell you what!”
Horray! Months of speech therapy just to elicit this particular typical response.
“You pick the book and I’ll read it to you for a change.”
“I am not being dah reader?”
“Just a thought.”
“Which book I am reading?”
“Doesn’t matter. Anything you like.”
“You are not er….doing dah choosing?”
“Wot I choose?”
“You tell me?”
“Anyfink but dah diamond book?”
“Which ‘diamond’ book?”
“Dah one wiv all dah diamonds.”
“Which one is that?”
“Agh! I not say it.”
“Why won’t you say it?”
“Coz den you will be remembering it and you will be making me be reading it again.”
“I don’t make you read books!”
“Liar! Liar! Liar!”
I try and work out which nerve I’ve touched? But he relents and takes pity on me. “It’s o.k. Your old lickle brain is not working good, but I have a brain of good remembering, because it is big.”
“You’re right! Clever big brain. So what book do I make you read?”
“Agh! You are dah stoopid one! You are making me read dah books dat are coming home from school.”
“Oh. Yes, you’re quite right, you do have to read those ones, but I don’t remember one about diamonds?”
“I fink it shrink!”
“What is shrinking?”
“Your stoopid brain.”
Fell right into that one! He’s probably right there too. In case you wonder why I don't correct him, guide him to more appropriate responses, this is merely due to the fact that I am too happy wallowing in the 'joy' of experiencing 'conversation.' [translation = reciprocal exchange]
“O.k. I give up. Which one was the diamond one?”
“’I’ll love you forever’! It had dah diamond periods! Remember!” he bellows, angry breath blasts my face.
Of course! How could I have forgotten? His book of the week from school, "I'll love you forever," had diamond shaped periods [translation = full stops] instead of the ordinary round black dots. How could I possibly expect the poor child to read such a nightmare of a book again. Publishers should take far more care with their punctuation, or more importantly, the shape of their punctuation, unless they wish to alienate a whole generation of potential readers.
And humble apologies to all those who favour different punctuation,spelling, font and colour schemes, all of which are beyond my technical control. [Translation = especially those annoying little cross bone tool icons in the side bar - enough to drive you.....
to an irritating place!]