I have moved over to WhittereronAutism.com. Please follow the link to find me there. Hope to see you after the jump! :)

Sunday, April 29, 2007

Motor Mouth - who knew a speech delay could be so noisy?

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!


marmiteboy said...

I gave a wry smile whilst reading your post. Sybil is a great one for picking up on things you say (not unlike any non-autistic child). Lily told me yesterday that Sybil had asked her if she could do a 'deal' with her over the cutting up of her books.

I hold my hands up as I did a deal with her last week about having a Jaffa Cake if she watched 5 minutes of tv with the sound up, which is something she won't usually contemplate.

Anonymous said...

I sometimes wonder why I ever taught the eldest to talk :)

The problem's he has (he's 7), is now that he sounds "normal" (not bad for a fully non-verbal child at his 3rd b-day) .. when he goes in loops (anxiety) people get confused looks on their faces and a reminder that just b/c he speaks, clearly, full sentences, follows conversation (mostly)... doesn't mean the autism has disappeared.


Kathryn said...

Great post. You've got it so right at the end especially when you talk about the importance of tuning into whatever communication is offered. Dead right and well said. My Ellie is non-verbal but quite the motor mouth as well. And she makes herself very clear to those with eyes to see, ears to hear, etc.

Your boys are lucky to have you. What an amazing story/life you are living. Thanks for commenting on my blog. It's great to have discovered you.

Anonymous said...

My aspie boy is abusively verbal. None of it is communicative in the true sense, but the sheer volume of what comes out of his mouth (some of it in untranslatable jargon) is staggering. My autie seldom speaks unless spoken to, unless of course, he's repeating something verbatim under his breath. But he's become very verbal, really: he can and does talk, he asks for things he wants, he asks open ended questions (!!). But we still have that eternal noise in the background: the humming, chirping, repeating over and over, grunts and barking and assorted other animal noises.

It is tiring! But oddly, the autie is often much, much more communicative than the extremely talkative aspie. Language disorders are an interesting thing.

The Jedi Family of Blogs said...

This post reminded me of the guilt I sometimes feel when I find myself overwhelmed by Brendan in "motor-mouth" mode- hey, at least he's talking! When he gets going though, I literally can't think sometimes & driving can get very dangerous (however, he's learned to accomodate my limitations by toning it down in the car when I request it). It's so good to be reminded that a good laugh can diffuse the guilt, & that adding the aforementioned guilt to my baggage is just plain silly! :)

Karen Putz said...

You wrote: "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."

Love this!

Imperfect Christian said...

I have two severely speech delayed children...and yet my home is nosier than you could ever imagine! The sweet sound of NOISE, even if it isn't WORDS!

mjsuperfan said...

Thank you for the link to your "7 Tips..." post. You have a way of hitting the nail on the head!

Special Needs Mama Prof said...

Oh lovely. I often think to myself, "when Evan does start talking, I'll probably want him to shut up."

mysamiam said...

When our little ones make noise, sing, yell, whatever, I am just thankful and blessed. Always blessed. Blessed be your noisy days. Thanks for the great post today!!!

Laura Echevarria said...

Thanks for the visits to my blog. It's good to know that we are not alone in trying navigate the strange world of autism.

Thida said...

Yes the ability to communicate is a wonderful thing. It's amazing the variations in speech.

erdonoh2 said...

I just wanted to leave you that website info that you had asked for on my blog. It is http://www.animatedspeech.com/

The program is so-so. I think that results would vary child to child. :)

kristina said...

When Charlie says some word or phrase what feels like 13 million times over and over and over I remind myself, once this boy could not talk at all.....

(btw, once upon a time I was a very shy one myself)

yerdoingitwrong said...

That is the sweetest picture on earth!

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