Sleep

All too often one hears adults bemoaning their experiences as children, how they were scarred and psychologically traumatized by their parents’ behaviour or words. Now that I am both a parent and an adult, I find that my ears prick up in the hope of acquiring handy hints, things to avoid. The list of my own parental errors grows as each day passes. If you were of a kindly disposition you might categorize these incidents as mere “eccentricities” but it’s hard to dismiss the weight of evidence to the ”contrary.”
It was a simple enough question afterall, but at 4:20 in the morning, in the dark, I am not in full command of my faculties.
“It is a reptile?”
“What is a reptile dear?”
“A turtle?”
“Do you mean a ‘turtle’ as in American, or a ‘tortoise’ as in English? Oh, actually never mind that, they’re both reptiles anyway, let’s start again. What do you want to know?”
He says nothing just looks at me, with his eyes. I’m not sure if it’s exasperation, bewilderment or despair? Possibly all three?

It’s been one of those nights when we had visitors, unexpected ones. The first one didn’t creep in on us, more of an electric explosion of wild nerve endings. Since no words were forthcoming we concentrated on calming. Now he is calm and asleep but his older brother has also joined us. We are rapidly running short of available "lying down" space. Like all siblings they appear to be connected by invisible lines that conduct energy, one to another.

He has been crouching at the end of the bed, in silence, in the gloom, hovering. [translation = must be genetic] I’m not sure if he’s pretending he’s not here or whether we’re pretending he’s not there. Neither side seems willing to clarify. No-one has the cognitive abilities to communicate effectively.

Spouse and I try to determine why the little one is asleep in his current particular position, the one where your knees are drawn up beneath you, face in the pillow. Mine too, would often be found in this "position." It seems protective, enclosed to repel all boarders. It also looks like THE most uncomfortable position, from the viewpoint of a side sleeper. [translation = someone with a strong aversion to secret suffocation during the night] Sleeping "face down."



“It’s only to be expected when you’re like him I suppose,” spouse sighs in a non-committal burbling kind of fashion of the truly sleep deprived. I agree, “yes, hyper-vigilance does mean that you need to be on your guard at all times.”
“Not very Fung shui though.”
“I thought that was for furniture alignment, not bodies?”
“Er, everything I think.”
“He should be on his back, watching the door, claws at the ready.”
“You think?”
“Not really.” [translation = don’t care, too sleepy]

It is at this point, that he asked his question, the original one, the “it is a reptile,” just following the parental exchange, and doesn’t seem to fit at all, which is a sign that he hasn’t been listening, maybe? Which means that something else has provoked this question, but what?
“What is a reptile? Is that what you want to know? Cold blooded, lays eggs that kind of a thing?” I yawn dredging up brain fluff.
“No. Is he a reptile?”
“Who? Who is a reptile? The lizards for starters, all three of them. Gecky, Stumpy and DJ are all lizards and all reptiles.”
“No. I mean is HE a reptile coz I was thinking he was a mammal.” He shoots a finger at his brother in the gloom.

“Why do you think he’s reptile? You know he’s human, a mammal, just like you, and me too for that matter, now I come to think of it.”
“But, but, but…….you said, you said, you said that he was lying like a turtle.”

This would be a prime example of why, after more than a decade's hard work of trying to learn the lingo, acquire appropriate American language and use words like ‘turtle’ instead of tortoise, I wish I hadn’t bothered!

Feed the birds - tuppence be damned

My Mother-in-Law is Italian, but lives in England for her sins. She came to visit one Summer for a few weeks. Of course all grandmothers are biased, but her delight in 'my' children, was balm upon my worried soul. [translation = pre-diagnoses] I'm sure that Italians have their own set of cultural norms and expectations, but they differ greatly from the British version. My children could be swinging from the chandeliers and Nonna would be there cheering them on.

Few people had the patience to try and engage my son but Nonna was relentless. The bond between them shone. I could explain this phenomenon with reference to her animated face, arresting hand gestures, non-American accent, or her demonstrative nature, but such a clinical approach fails to capture the magic.

One day, we went to the beach at Santa Cruz. I had carefully assembled a large pic-nic in advance, to cater to everyone's foibles. At that time my son had a reasonable vocabulary but rarely spoke. When he did speak his only topic was Thomas the Tank Engine. He was also hyperlexic, but was in the process of losing that skill.

Nonna has many skills. One of her more annoying ones, is her affinity with wild life. From insects [translation = bugs] to elephants and everything in-between, Nonna is their champion. They are drawn to her by some invisible thread. Dr. Doolittle is as nought beside this woman.

Hence, when everyone had abandoned the pic-nic fare, since it is impossible to nail children down in sand, Nonna began to throw the left overs into the sky for the seagulls benefit. Within seconds we were a scene from Hitchcock. Spouse sighed and clucked, as he tried to chase the birds away. I turned my attentions to the criminal modeling inappropriate behaviour to my children, "now listen! Nonna is very naughty to feed the birds." [translation = "flying vermin"] Nonna pulled a face, as well she might, in league with her grandchildren in a common conspiracy. She pulled him close for a snuggle, but he wriggled free to protest..........

"No! Nonna is not naughty. Nonna is good and kind!"
We all turned to look at him. It was the longest voluntary sentence he had ever uttered.

This son - defender of the gene pool and super hero to all other 'lesser' "beings."

Not just any child - play is children's work

Maybe you are new to the concept of autism? We're pretty new too. A couple of decades ago, my knowledge was limited to the film "Rainman," which I enjoyed at the time as a piece of light entertainment on a Thursday evening. I had the odd deep thought at the time, mainly limited to the exploitation of people less fortunate than myself, but that was about it. It wasn't that I had any more or less prejudice than the rest of the audience, it was merely that it was a subject off my radar as it had no direct impact on my life.

Things are different now. Two average girls and two autistic boys and a weekend. We are a couple of old crocks incapable of taking care of ourselves, let alone three active small children in need of entertainment, supervision and guidance. It is a helpful reminder that old people like us shouldn’t breed, at least not unless each child comes with an emergency battery pack for the parent.

Perhaps you still have your inner child? I’m hunting mine down as we speak, but it’s hard work. When I was a child, I just played, nobody taught me how to do it; I was a child therefore I played, that was the reason I was there, to play and grow up, not much else.

If you take the play part away from the equation, you are left with just the growing up bit. Whilst they do grow and get bigger they are merely getting larger not expanding their skill set and not getting any closer to being in the category of ‘normal’ or what might pass for ‘normal’ if you’re not looking too closely. Afterall my expectations are realistic, we’re aiming at blending in, that’s all with a hefty dollop or two more of the happy quotient.

However, you can’t blend in, if you can’t play and have no sense or humour, or alternatively, a sense of humour that is unique and not enjoyed by anyone else. Your own jokes may make you happy, but if they don’t match with anyone else on the planet, then there is not going to enjoy a resounding echo of laughter, and we’d like that reciprocation part of the puzzle, if we have the choice.

So lets take an everyday holiday kind of an example, a Labour Day kind of example. We will go out and play, not labour. A picnic in the wilds should be a doddle. [translation = easy] It would be easier on the beach, or by a river, any kind of water, but we’re taking a more challenging example here.

So you arrive in the great out of doors. [translation = we skip over the hideous "transition" in the car] The boot of the car [translation = trunk] is over flowing with entertain as well as a whole slew of oddities to accommodation several small people's special needs. The nail clippers are no dead weight, as long as I don't forget to pack them, but the assorted tasilmen and plethora of clothing gives the appearance of a camping expedition.

What are you going to do? Well I’m going to sit back and read my book, whilst my children play before they come gamboling back for a picnic lunch. Or at least this would be my plan in my own personal ideal world. That's what my mum did, that's what all mums did in those days. Their job was to provide the treat, the opportunity to drive out into the countryside on a jaunt. Our job was to play. Unfortunately I am in a different world, a predominantly autistic one, so reading, either for myself or for them, isn’t an option.

So what can we do? Well we could play tag. We could, but no-one wants to.
‘Why?” is the universal response. The answer, because it is ‘fun’ doesn’t translate either. O.k. so we dig for the inner child, put on our best happy face and start to play tag, but nobody runs anywhere, which makes it too easy to catch everybody, which doesn’t model the reinforcing positive outcome of ‘fun.’

Never mind, how about we climb a tree instead, sort of naughty but nice, and to hell with the environment. Again we reach the question ‘why?” Indeed, why would one climb a tree? Because it’s ‘fun,’ has the same doomed conclusion as before. We model tree climbing but no-one even observes our efforts. Making monkey noises from half way up the tree, merely draws the attention of strangers, who wonder why we are damaging a perfectly harmless tree and neglecting our children. Never mind, more fun to be had.

How about we roll down the hill and see who gets there first? “Why?” I’m so glad you asked me that, because it is ‘fun.’ We don’t even have to race and avoid that whole nightmare of winning and losing, we'll just do it for the proprioceptive input, go mad, why not? Apart from the obvious problem of having your body in close and personal contact with something as scratchy as the grass, there is a definite lack of enthusiasm from all quarters, apart from the adult population.


Never mind, there’s a nice breeze, howabout we fly that kite, one of spouse’s favourite occupations. “Why?” well yes we’ve done that bit and we’ve come to expect failure but we carry on regardless, even though jaws are beginning to ache from all the effort of this ‘having fun’ malarkey. Nevermind! Lets take the sedate option, afterall I’m beginning to flag a bit.

Lets throw caution to the wind, ignore Mother Nature and make daisy chains, no you don’t have to make them yourself with your fine motor challenges, instead you can just pick the daisies and bring them to me. No? O.k. you can just sit and watch, whilst I make one before your eyes, it's almost like magic. Yes I know that they’re not daisies, I know that they're California poppies, which is a bonus because orange is your favourite colour. Yes I already know that despite the speech delay you are able to pronounce ‘protected species’ but you’re banned from saying it. You’re bored to tears? This isn’t doing it for you?

O.k. tell you what howabout we take reeds and blow through them to make whistling noises? No? O.k how about farting noises, you can make some great farting noises. All children think that farting noises are hilarious. Not you? Why? No? O.k. what else can we do?

Lets hunt for ants in the grass. Not ants? O.k howabout we look for any small insect life, any kind? How about you pretend to be interested just to make me happy? Sorry that one just slipped out. So, where are we?

Lets lie back, kick off our shoes, watch the clouds and see if there are any pictures in them? Of course, yes I was forgetting that you need your shoes to stay on. Can’t see anything in the clouds? What about the train? Not into trains any more, sorry I was forgetting.

It begins to get to you after a while, you begin to doubt your sanity. Why do we do these particularly pointless things? Where exactly is the pleasure in doing them?

A huge chunk of them, is the enjoyment of sharing with someone else, the joint attention, not the actual activity itself, and that is why it is so futile and painful.

What about some of those mind boggling boring finger games, like round and round the garden, that you grew out of, at four perhaps five. Then you’d find that you’d go round to visit your grandparents, when you were much older and sophisticated. Your grandparents start to play finger games with you. You knew you were too old for such childish things, but you’d play along, just to see your grandparents smile and be happy, because you loved them, even if they were completely out touch with the reality of a nine year old. You’d be magnanimous, enjoy the physical contact, pretend to be a kid for a while.


It reminds me of a particularly shameful moment of my life when I was forced against my will and despite my better judgment, to buy a book which would tell me how to amuse children in small confined spaces, which at that time seemed to be largely waiting rooms. I was confident that if I could learn a hundred more games that I would be able to entertain them during the seemingly endless age, between first doubt and a diagnoses. Thereafter I would have no need to entertain copious numbers of children in small places. As it turned out, the book was a complete rip off, as I had already suspected. I already knew the majority of the ‘games.’ It was all a big con designed to pray on the vulnerable, the incompetent parent, oh shame on the publishing industry!


The real trouble was that I had bought the wrong book or the wrong category of book. I didn’t need a book about what to play, what I needed, was a book to give me a key to access my children, something to help me break through. I could have all the games in the world but if I couldn’t connect, they were useless. I needed a connection book. I didn’t find a connection book until much later, but I acquired the principal tools needed, only one of which was perseverance.

I look across at spouse who has flagged, or more accurately, given up. He flies his kite, on his own personal hillock, alone. The Batman kites flutters way up high in the sky on a long, long, long piece of tatty string. Pity I didn't pack the scissors? There again, there's always those nail clippers!

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!

Book Choice - reciprocal exchange we love you

“Tell you what!”
“Wot?”
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?”
“Right.”
“Wot I choose?”
“You tell me?”
“ANyfink?”
“Anything.”
“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!]

Pick your poison

“You drink potty water! You drink potty water! You drink potty water!” he giggles. I am uncertain what developmental stage this signifies? I do know that the difference between his chronological age and developmental age is narrowing. I should be celebrating this breakthrough, I think?

Everyone is at home as it is the weekend. The child lacking volume control skips and spins around the room working himself up into a frenzy. I down a bottle of ensure as I don’t have the time to create a more interesting liquid. I dither, what should I be doing with whom? He is happy and vaguely foul mouthed. He does have some wiggles to wear off. Which is more important? I tune him out, whilst I listen to the exchange between the other two.

I have no idea how many hundreds of beastly little Pokemons there are in existence, but I know that there are far too many, a bit like dinosaurs, or Thomas and is ever burgeoning army of ‘friends.’ Pokemons are vile little creatures, most of them sexless. They start life as one thing, say’Pidgey,’ and then ‘evolve’ into a Pidgeotto,’ to finally reach the pinnacle of developmental prowess, in the form of ‘Pidgeot.’ It’s enough to drive a mother well away from the nest towards the supermarket to buy more ear plugs.

His sister holds the contraption, the Gameboy. She manipulates it such that each character makes it signature tune. Each Popkemon has their own annoying little ditty. They all sound more or less the same, that would be to say, very annoying, not to over stress the point. They are electronic sound bites, less than a second. She hides the screen from him, “guess it?” she commands.
“Slowking!”
“Right. You’ll know this one too!” I listen.
“Marshstomp!” he snaps back.
“Hey! You won’t know this one!” We listen.
“Moltres!”

They trot through the sounds and matching names for a good 17 minutes. Ordinarily, this would be an example of terminal boredom, perseveration and heaven knows what else.

But of course there is also a flip side, the good stuff, the reciprocal exchange and that truly astonishing auditory memory and processing, from a child that cannot remember the name of the colour ‘green.’ When he does remember and retrieves the word ‘green,’ he alters it to a more accurate shade, such as Chartreuse. The fact that he knows them all, can read and pronounce them, has learned their ‘qualities and abilites,’ with staggering exactitude, leaves me quite breathless.

I won’t rush to stock up on ear plugs then.

Burn Your bra

When I had been in the States a couple of years, I more or less had them tapped, Americans that is to say, and their funny little ways. They have lots of funny little ways, a source of great hilarity to foreigners such as myself. I noticed that quite often, they would have a box of matches in the loo. [translation = rest room] Being the knowledgable person that I am, I knew that this was sound evidence of closet smoking. Sneaky little Americans shut themselves in the loo, together with the obligatory extractor fan for a quick fag. [translation = nicotine hit] Possibly they were also members of the mile high club, but on land, despite puritan evidence to the contrary. I deduced, that Americans locked themselves in the loo to have sex and then a post coital. What other conclusion would any sane member of the human race conclude?

Oh yes, what I didn’t know about Americans wasn’t worth knowing.

It was therefore with some surprise, that I learned later, much later, that matches in the loo, served an entirely different purpose. The purpose? You really want to know? They all have them you know, matches in the loo, that is to say. What do they have them for? Alright, I’ll tell you, put you out of your misery, you’ve forced it out of me. But you’ll have to suspend reality for a moment, as you’ll never believe me. You'll never guess in a month of Sundays. They light a match to eliminate unpleasant odours that are commonplace in the room of rest. Isn’t that the most hilarious thing you’ve ever heard? I nearly died of laughter when my pal [American] translated this for me. As the Muse handed me a tissue, [translation = Klennex] I couldn’t help but point to the extractor fan, mainly because I was incapable of coherent speech at the time. That one feature, has yet to be satisfactorily explained. Maybe it’s something to do with a belt and braces approach? [translation = overkill]

Meanwhile, early in the morning, the radio tells tales of the 1960’s, whilst I make oatmeal and other loathsome concoctions for the nutritional benefit of my children.

“What was so special then, back in the old days,” she asks innocently.
“Apart from the fact that that was the unmemorable year of my birth, it was also a time of political enlightenment.”
“Enlightenment?”
“Um…..breaking out of the social norms of the time.”
“How did they break out?”
“Well women did wild things like burn their bras in public.” I wonder if anyone did it in private?
“Why did they do that?”
“It was symbolic, escaping from male oppression, and so on.”
“What is male oppression?”
“Er….well, things were different in those days, women weren’t allowed to do lots of things that they shouldn’t have been prevented from doing.”
“Such as?”
“More of less everything,” I say popping her cereal in front of her. I notice that one of my sons is frozen to the spot. “What is it dear?”
“You are dah burning?”
“Warm, busy, but not burning dear.”
“What it is dah ‘bra?’”
“Underwear for women’s chests dear.”
“I am having dah underwear for dah chest.”
“No. Remember, I said ‘female,’ you are male.”

Although his pyjama bottoms seem to be adrift somewhere, he lifts his top and peers beneath, searching. “I am not wearing dah bra?”
“Correct. Nor are you wearing the bottoms either!” I admonish.
“Why you are burning dah underwear?” I pause, wipe oatmeal from a reluctant mouth and seek guidance.
“What your mother means, is that burning your clothes or the flag or more or less anything else, is a way of telling everyone that you object, protest, break down rules that you don’t like.”

We exchange adult glances. It was better than I could have managed, but still has a few fatal flaws. We both know that the trigger world ‘rule’ was in there somewhere. The clock strikes the hour of 7 a.m. Maybe now we will be more awake with more brain cells available to us. Maybe we can rewind and start again?

“We have dah matches?”
“No! We have no matches.”
"But I am needing dem!"
"You do not need matches my love, hear open wide, just another spoonful.."
“We have dah matches for dah burning food.”
“?”
“Oh, they’re special matches, only for the barbeque.” [translation = Brits do not excel at the barbeque department, more of a wake or a cremation]
“But I am needing dem badly for my rules.”
“You may use matches when you are 18, er….21 the age of majority in California.”
“But I am only dah 6!”
“Indeed. Only 15 years to wait.”
“How many?”
“How many what dear?”
“How many are dah minutes in 15 years?”
“?”
Americans! What can you do with them?

Adam and Eve - knowledge begets bounce

I put down my book by Ruth Rendell to think. ["Adam and Eve" and Pinch Me] I contemplate the many ways I have unwittingly tortured my children since babyhood.

All those supposedly innocent little ditties, nursery rhymes and games. We all know them, "round and round the garden," "pinch punch, 1st of the month," "the incy winsy" spider,’…….an endless list. Each and every one of them, has it’s own unique twist of a flick knife, but I didn’t know that at the time. Anyone with more than one brain cell would have cottoned on [translation = realized] that although I tried to engage my children, what I was really doing was beating them with a very large, noisy, prickly stick.

I decided that the ‘oldies’ might not be ‘goldies.’ I even went as far as to purchase a new book on 101 ways to entertain your baby, in the hope that I could improve my skill set and become a little more up to date. As with most things I tried in those days, it was another unmitigated failure. It seemed that there was nothing I could do to induce a smile. Their happiness quotient was independent of my input. Indeed it would be more accurate to say that most of their misery was caused directly by me, no matter how innocently. [translation = ignorantly] It seemed impossible to teach a "primigravidae" [translation = old first time mum] new tricks. [note 1 below]

But of course, that was a long time ago now. I re-evaluate the ditty – Adam and Eve and Pinch Me, went down to the river to bathe. Adam and Eve were drowned. Who do you think was saved? And the response is……altogether now….. ‘pinch me!’ Then you pinch them and everybody laughs, or most people do, especially little people.

As with most things, what was true a week or two ago, [translation = or month, or year] is not necessarily true now. I wonder if it’s worth having another go? What is the likelihood of meltdowns? How many people will have meltdowns? Will they be really, really bad meltdowns, simultaneous ones? Maybe I’ll be really lucky and they’ll just ignore me, or not get it, or be indifferent? I strategize timing factors, variables such as their current mood, their absorption in their activities, as I don’t want my ‘intervention’ to become an interruption or present itself as a transition. [translation = stop one thing and start another]

I dither a wee while until the moment presents itself. They are at the table for dinner. I have read several picture books to entertain them and distract them from the hideousness that is dinner. They are mellow. [ish] I tentatively suggest a change of tactic, a minor diversion from story telling, a little joke, a tiny one, just for their delectation. There is a fluttering of apprehension, dissent, minor protestations followed by resignations. I capture three pairs of eyes and sputter my way through the lines. I smile. I wait a response. I count. I include 'ands.' Brains in small craniums process words, retrieve others, connect the dots. I can hear them whir, the brains that is to say ....…….

“PERwinch me!” spews junior spraying us all with half masticated wieners as he guffaws.
“Ah!” bellows senior, throwing himself back on his chair to collide with the dresser, hurling sweetcorn kernels in a shower of amusement.
“Huh?!” frowns my daughter……

I pinch her, gently, just because I can.

[note 1] Although I already had a daughter, as far as the medical profession was concerned it was so long ago that my body believed it was the first time I was pregnant. Like a virgin all over again!]

Dijon? Mais oui! [translation = therapy for free]

Now I am no gourmand, nor some sort of food snob, but when it comes to mustard, well.....…lets just say that I have certain standards that need to be maintained. It’s not that I shun Coleman’s [translation = lurid yellow English mustard that blows your socks off after just one whiff] it’s just that there are other flavours and textures, such as the wholegrain mustards, that are all together superior.

There would, it appears, be other gloops, that call themselves mustard. In America these substances are known as mustard, but are in fact, merely neon yellow slime, masquerading as mustard. It only took me a few short weeks in the States to discover this deception foisted upon my fellows. Once I gained this knowledge was careful to ensure that the dreaded concoction should never pass over the threshold of this house.


But of course that was a few years ago now.

Out of nowhere, my son declares that he is a lover of mustard, to delight my fluttering heart. At last! Is there the remote possibility that we are edging closer to what might be described as 'normal,' or what might pass for normals if you don't pay too much attention?

Spouse interjects himself. He explains that my eldest son recently had cause to come in close bodily contact with the substance, he witnessed the exposure first hand. Furthermore he adds, that some buddy at school, a peer, a preferred peer, also favours mustard. I harbour evil thoughts, but suppress them. I duly write ‘yellow stuff’ on the food shopping list.

In the supermarket, I find the aisle that sells slime in it’s many and various American manifestations. I am not defeated, merely sanguine. I study the offerings with the dedication of a scholar, to find just the right one. The right one is difficult to determine. I decide to narrow my choice down to two options. My criteria? Flavour, brand, price, size, recyclable container or otherwise? Nope.

I buy both. One to challenge his fine motor ‘twisting’ skills, one to encourage his ‘flip up the top’ skills and both fulfill the goal of ‘both hands work together to squeeze’ skills.

Oh yes, this mustard business is hot stuff.

Now don't tell my Mother as she'll have my guts for garters! [translation = be seriously displeased]

Early days 6

I beetle about late at night and then check the computer for some 'down' time. I come across a "posting"
that transports me back in time, back to the good old days when I had them all securely strapped into the double push chair. [translation = buggy]

Yes, the day that I could no long pry their huge bodies into that contraption was the last day that I ever visited the post office with them. The whole exercise was just much to dangerous. [translation = to my own sanity]

There's something about queuing [translation = lining?] that drives them all too distraction. I would go armed with no end of entertainments, snacks and other bribes to attempt 'containment' during the oh so long minutes within the confines of that den of torture.

Why bother? I hear you cry. Well we foreigners are discriminated against. We are not permitted to merely hurl a parcel into the bin. Oh no, perish the thought! Instead we are forced to complete pointless paperwork, declaring on pain of death [translation = deportation] that we're not sending anything nasty through the mail.

It was while pondering those heady days of confinement, that I find there is a big ruckus back home about "disabled parking permits." A couple of years ago I would have sold my soul for a such a permit. I went as far as printing off an application even though I could hear the expert advise me 'if we give one to you, then we'll have to give one to everyone who is autistic.' I completed the first box, name and address and then abandoned the project.

How I longed for one of those tickets! To extract both my boys from the car into the 'space' of the parking lot, [translation = car park,] trying to get both of them, and my other daughter, safely onto the side walk, [translation = path] was a Herculean task that I dreaded. One would run off if I failed to have him physically within my grasp, the other would collapse in a heap around my ankles, hobbled. It is a miracle we are still alive to tell the tale.

How much difference would a permit make? Now, or back then? Lets go to 'back then.' On a good day, there are only a few car trips. Bear in mind that in America, nowhere is 'walking distance,' assuming that anyone around here 'walked' in the tradition meaning of that verb. Alternatively, take a bad day. A bad day, by definition, has many transitions, car transitions, which are the worst kind; to and from school, to first, out of the car, back in again and then second therapy, and then home. If I could have parked the car in the disabled spot, which is usually the closest to the entrance of where you want to go, this would have minimized the physical distance that I would have had to carry them, say 10 to 25 feet. Anywhere else, where often you have to cross a traffic steam as well, increases the distance and the time. It's a mathematical question, so I'll skip it. Instead I'll count the grey hairs, worry lines and shoe leather.

I should take this opportunity to apologise to all the casual passer-byers, who over the years, have had to witness the sight of a crazed mother octopus careening around a public place with weak sheep dog skills.

As a matter of public safety policy, I should have to wear a bag around my neck, with a little neon sign saying 'please help yourself to a pair of complimentary ear plugs.' I doubt if anyone is brave enough to get that close!

Please give us the parking permits!

Teddy Bears' picnic - boycotted

One of my sons suffers from "Ursaphobia", an irrational fear of bears, or more specifically, teddy bears. To be really picky, I should point out that it's only their "faces" that he objects to so vehemently, the claws and other accoutrement don't seem to both him one jot.

His little brother, although he was also non-verbal in a technical sense, but different sense, fixates upon words and phrases, which he repeats for as long as he is permitted to.


On the whole, I do not describe the interaction between the boys, because as with most siblings, their own personal foibles are not known. I can describe one set or a different set, but to do both at the same time is often simply too confusing. The truth of the matter is that during the average day they ‘set each other off.’

All children have soft spots, weaknesses and strength, but with mine the sheer depth and pinnacles in infinite combination can be catastrophic. They ignite like tinder and the sparks spread like wild fire. These situations challenge my parenting skills and expose my true colours, namely yellow [cowardly] or green [naïve / slightly nauseated] I need to make instant decisions based upon faulty and partial information. If I’m lucky, I can untangle the mess and calm everyone down. If I mis-read the situation we, quickly turn to lava.

Towit-


“If you go out in the woods today If you go out in the woods today
You're sure of a big surprise,” he sings utilizing his robotic voice, whilst his brother adopts a turtle position but covers his ears. Junior heard the song and has adopted it as his signature piece. It is an unfortunate alliance since his brother loathes teddy bears.
“If you go out in the woods today
You'd better go in disguise,” he continues, slipping into Pokemon voice. His brother rolls over on his back, still clutching his ears, his face screwed up like a crumpled paper bag.

“For every bear that ever there was
Will gather there for certain, because
Today's the day the teddy bears have their picnic,” he concludes with a flourish in full cherubic mode. He is word perfect with the crisp diction of the echolalic. His brother keels over on his side in a foetal position, moaning quietly whilst he hunts for some words in response. Little voices shout in my head 'do something! do something! do something!' but my brain is frozen into inaction, whilst my body crouches ready to launch, a rugby style tackle. [translation = not a notion]

I hover close by since it is highly likely that his words will not come. It is much more likely, statistically speaking, that any moment now, he will erupt in a full blown meltdown that may or may not, result in him being able to pounce on his little brother and crush the life breath out of him. [translation = terminate his singing career prematurely]

“Picnic time for teddy bears,
The little teddy bears are having a lovely time today.
Watch them, catch them unawares,
And see them picnic on their holiday,” he croons, his pronunciation meticulous, with an English accent to challenge the Queen herself. I hear growling noises bubbling up in his brother as he flops from one side to the other, the slow slapping sound of a landed salmon, apart from the cracking of knee caps.
“ See them gaily dance about.
They love to play and shout.
And never have any cares,” he adds whilst skipping on tippy toes, each hand clutching a Pokemon that dance in time. The pressure builds steadily in his brother. Please don’t let him kill him this time?
“At six o'clock their mommies and daddies
Will take them home to bed
Because they're tired little teddy bears,” …………..the bubbles effervesce but it’s the key word that lifts him to his feet, ten feet tall on tippy toes, rigid in every fibre except his mouth, “I am tired of dat song!” he says loudly, directly to his brother’s face.

We shall enjoy an awards ceremony for all parties later, as it seems that it's true that 'One man’s meat, it another man’s peanut butter!' [translation = poison]

Humble apologies to everyone who now has to suffer this tune rolling around your cranium for the next 24 hours.

Stone soup

I go to school to collect them. I have stopped sniveling with "self pity" and am fully prepared to deal with the onslaught of recriminations that I am about to batter me.

“Hi!” I blurt to the first one. He looks at me, head on one side.
“Hey! You are still talkin dah funny. Open!” he commands. I obey. “You are not been fixed? No fries? No "fries" at dah restaurant?” His last few syllables head for the skies as he throws himself backwards in a rage against the unfairness of it all. This is timed perfectly to collide with the arrival of his brother. Although I have said nothing to this one, his brother’s reaction is the only information he needs. The braces and elastics are still in place, which to them means, that we will not be going to a restaurant to celebrate my release from my "mouth corset."

My daughter arrives to survey the scene. She glances at me, my tight lips and raised eye brows. “Oh no! It’s not fair! You promised, you promised, you promised!” Everyone is wailing much too loudly for me to be able to make myself heard, let alone understood. I go into mime mode which affords me a little credence. Marcel Marco has nothing on me. I cheat and pull out a large piece of paper, and unroll it slowly. The "icons" and words map the solution.

I feel like Cinderella’s Godfairy – ye shall go to the restaurant, where I shall slurp soup and be happy to have fulfilled my troth.

Suffer little children

I snatch it away from her without ceremony, her latest prize from school. A neon yellow squishy ball. For some unaccountable reason, war has broken out between them for ownership, resulting in a mass outbreak of jelly legs. No-one appears capable of walking. [translation = positioning oneself in a vertical position to place one foot in front of the other in a regular sequencing pattern.] My children flap about the ground [translation = dirt] like so many landed salmon, but much noisier. I stuff it up my jumper, [translation = sweater / shirt] the squishy ball that is to say, so that I have both hands empty and available. I guide small people in the general direction of the car. I stand tall and attempting marching with my one new perfect breast in the centre of my chest, matched either side by my own pimples.

I hold two hands firmly as we attempt the sidewalk, but junior is distracted by the cars parked alongside, or more accurately their tyres and wheels, his latest ‘interest.’ I try to explain about how people do not like it if their cars are touched by strangers, but I have yet to hit the right note in my attempts.

Progress is slow. Many parents and children swirl around us, the obstruction. I notice the odd raised eye brow, but assume that everyone is jealous of my new and improved feminine physique.

I also notice that quite a few children say goodbye to him, not strangers, familiar enough little faces, but none that I can put a name to. Several children make friendly remarks to him, all of which he ignores. [translation = due to a shortage of "interpersonal skills," amongst other things] Older brothers and sisters of these same children, also make comments. I hear a mother or two ask “is he your new friend?” or the equivalent thereof.

I dig in his back pack. The daily report is there. I read it whilst he talks to a pirelli, a tyre that is to say. My other son take a rest and lolls against me, with the weariness of a long distance runner. I am a lamp post. My daughter stands nearby, a hip thrust out with the petulant attitude of the near tween, as we move, imperceptibly, slowly, from one wheel to the next.

The cars are stacked up and the drivers face towards us. Each occupant knows that their car is next for scrutiny. “Look at him, he is dah dirty one,” he guffaws as the owner leans over and lifts her sun glasses for a better view.

From the note, I gather that junior attended the mainstream first grade class for seven minutes, where he aced the spelling test. More importantly, although his letters were not formed to his satisfaction, that even though his "robot writing" had the odd curve, he managed to contain his fury and limited himself to motor mouth self talking, much to the confusion of his temporary new class mates. He managed to remain on his chair.

I hunker down to sit on the curb, [translation = the gutter, with one foot on the storm drain,] whilst he examines a hub cap, a shiny one, where he examines his reflection and pulls faces of delight. I fold my arms over my breast, then unfold them, then refold them under it. The "tip of his index finger" bravely skims the surface of the hub cap.

The special ed teachers and mainstream teachers, have a close working relationship and years of experience. They colaberate to find a ‘best fit.’ I suspect that the mainstream children are given the equivalent of a pep talk. I believe, that in some senses, it is merely a nudge in the right direction. This is due in part to children's natural affinity for one another’s best interests. It is also because the school has an ethos of inclusion that permeates "all personnel" and pupils. It is reinforced with a rigorous ‘anti bullying’ policy, the like of which I have not witnessed elsewhere. The trick here is to utilize the pupils to police their fellows. They see what adults may miss, the subtleties that are lost on addled brains. The youngsters weed out the tormentors, teasers and nere do wells, because they know what they’re looking for and can see through the veil that is raised to deceive world weary, jaded and forgetful adult.

“How was Mrs. B’s spelling class?”
“Boring, boring, boring.”
“Who did you sit next to?”
“I dun know. I dun know. I dun know.”
“Were there any girls in the class.”
“Dunno. Dunno. Dunno. ”

Clearly, a perfectly ordinary exchange that all parents experience on occasion. Maybe I am able to jam my foot in the door of the ‘all parents club' afterall, I wonder to myself? Junior tugs at my trousers, to point, sputtering with excitement, “did you be knowing dat wheels,er..... hub caps, dey are having dah best robot writing on dem!”

Well, a big toe perhaps?

The threat of evisceration

At 7:05 in the morning I place fruit on the table, the empty table before school. I check the time. I beam with self satisfaction. Never in the history of this household have we made it to anywhere near seven in the morning without a houseful of screaming banshees. I tip toe upstairs to gently waken my sweet bairns from their slumbers. Each bed has a mound and sound. I lift the covers to a sudden flurry of activity, to discover that each is playing an electronic device, “we’ve only been playing a few hours!” she pleads in her defense, white faced and dark eyed from sleep deprivation. Each child now sits on an electronic device with their hands behind their backs, a picture of innocence but for the little muffled tunes emanating from their bottoms. I pout and purse my lips, searching for the correct verbal response. I remain silent for safety purposes and mime them to ‘go downstairs.’

I debate the best method of reaching the goal of ‘school on time,’ now that I have three thoroughly exhausted little individuals to speed through a contracted morning "routine?" Every minute counts and we’re already 5 behind.

Spouse appears after a disturbed and brief, night’s sleep.

“I’m warning you now,” he announces to three sets of eyes. Spouse is taking command and I watch in awe, because he has skills that I do not. In his open palms, he manages to contain a wide collection of ‘electronics.’ [translation = the tools of bribery, "reinforcement" and possibly, most importantly, motivation]
He continues, “I’m going to take them all to work with me, every last one of them!” A collective gasp of warm horror steams into the cold room, where goose bumps cover each naked body. “I will not tolerate this kind of theft!” It would appear that my own ‘hiding’ skills are not up to par. {translation = they are getting much better at finding.]

My daughter just covers her mouth with her hands, holding it all in.

No so her brothers. Junior is the first to explode, “ I be angry wiv you. Dat is not fair. I not tolerate, coz you are at dah workin forever!” A valid point, that demonstrates his increasing grasp of the concept of time and delayed gratification. In this instance, a huge delay, due to the long hours that spouse spends toiling away at work.

His brother has already managed to use up his bank of words during the early twilight hours of the day, in bed, with the Gameboy. Wordless, he keels over like an axed tree, rigid. Spouse continues, “I going to take them to work and take out their tunes! If you’re very good, you MAY have them back, ……..at some juncture.”

“I wan my juncture now!” screams the sparking jumping jack.

Spouse and I exchange glances as he marches off the scene to find something to put them all in. I consider my incredibly long ‘to do’ list of jobs, chores, errands and things to mend. Whilst a few are of an "electronic" nature, most are far more dull. Disemboweling ‘electronics’ failed to reach ‘list status’ at all.

As he passes, I notice the corner of a crooked smile on his face. He will have such fun dismembering, disconnecting and then re-assembling those three little devices, whilst he is ‘at work.’

The long goodbye

[from the weekend]

I make him do it against his will. I make him hold the pencil, although I skip the pencil grip to correct the manner in which he grasps it.

I edge him towards my make shift chart, a soft shoe shuffle but in bare feet. He faces the chart but his chin drops down so that his eyes can avoid it.

“It’s going to be fine dear,” I coo. He raises his arm stiffly, like a lever and draws a wobbling line through ‘Saturday’. This is everyone’s visual cue that we are on the last day of the holiday. Sunday has a arrived. The last 24 hours before they return to school.

Luckily for me, I learned a long, long time ago that transitions, the passage and concept of time, were a challenge. A week’s holiday was fabulous but at the end, a monumental weeping, wailing and gnashing of teeth would ensue. People would make accusations that they might, or might not regret, based upon a faulty concept of time travel. Wild angry rebukes about theft of time, larceny of holidays, and kidnapping of leisure by some willful nere do well, would whirl around the house.

I attempt the usual platitudes, the joy of seeing ‘friends,’ a quick spiel about what constitutes a friend, the pleasure of being back in a familiar class, adding verbal clues to the visual ones in that room. He is not impressed and snuggles back into my dressing gown burying his face. He nuzzles and giggles the plumbing, holding excessive quantities of Ensure. Such affection. He mutters into the material, “but I stay home,’ he pleads. I lift his lovely face, smooth his troubled brow and utter more reassurances, that all will be well. His nose crinkles with annoyance, “no I wanna stay home and play Gameboy forever!”

Hmm. Definitely time to go back to school.

Perseveration - what it is?

For a faster loading version visit here:- Whitterer On Autism

A very good question. Go to the top of the class. I can offer you a dictionary definition – or the various definitions as proposed by the experts. They make for a good starting point. However, they reflect the ‘discipline’ of the expert. The cognitive expert’s version differs markedly from the behaviouralist’s version and so on.

How about -'Persistence of a verbal or other behavior beyond what is apparently intended, expected or needed.' from "Behavenet."

Or we could use "Wiki's" version - 'Uncontrollable repetition of a particular response.' We could try something more medical in it's terminology, but for current purposes, we have enough to work with, more than enough.

I have two versions to offer. They have a common element – repetition, otherwise they differ. Both of my boys, do this. They do it in different ways from each other. They each do it differently this month/year/ day, from how they did it last time around. It is essentially a moving target that often reflects the ‘stage,’ whatever that might be, at any pin prick in time.

Take the repetitive phrases, little ditties gleaned from the cosmos, that they repeat in a loop, sometimes for many hours; ‘to infinity and beyond,’ ‘Elliot…..idiot,’ ‘ I am not a number.’ Here, we have echolalic [translation – repeat as in an echo] tendencies, which complicate the picture.

What about the fixations or special interests? “ I am a train, not a boy, not a toy, not a girl, not a lamb,” with the elements of rhyme, meter and rhythm. Autistic children often fixate on a narrow subject that infiltrates any number of aspects, if not all, of their lives. Trying to dissect different elements may only confuse you further.

How about we try slipping in the tick or the stim? Stims and tics are terms used as shorthand to describe ‘self stimulatory behaviours.’ Many of us are familiar with hand flapping, flickering fingers and oh so many more variations on a theme. Many parents get in a great tizzy about these habits, in part because they are so noticeable to other people. The child with a hand down his diaper will only attract a moment’s attention. Not so the 7 year old, or older child. The child who whizzes around making train noises, repeating the phrases of the ‘Thomas the Tank engine’ books by the Rev. Aubrey, is a more subtle version. People may notice, but it’s ‘cute’ in a three year old. In an older child the same habit marks him or her in the public eye. But he’s word perfect, so it that echolalia instead?

There again, we have the OCD factor – ‘trains are busy, trains are fast, I am a train, no I can’t eat trains, eat nothing.’ The fear factor, the phobia, special interest or fixation can all play a role and confuse the picture, especially if you are not an expert. It’s hard to determine what you are witnessing, which makes it more difficult to decide what, if anything, to do about it?

Logical, very logical thinking, is a factor that plagues the ineffectual parent, frequently. A small incident of no particular significance can blow up into a major factor without warning.

Strangely, I have lots of photographs of my children having meltdowns. How could that possibly be? Why would I have a camera in my hand at such a time? Because the few seconds of delay in a digital camera, for an autistic child, can mean the difference between a photographic opportunity to capture a sweet memory and the moment of self destruction. The hair trigger, is aptly named. But I digress.

What about the child that tears his clothes, shreds and rips them? Would that be tactile defensiveness or sensory integration issues, or both? Probably, a millinery problem for the parent. What if he sucks his clothes, chews them, bites them? Is that oral defensiveness or the sensory complications? But what if he rakes his skin, pulls his hair, bangs his head, pinches himself to leave welts? Is this different or the same? For us, these have been passing phases, severe when they first manifested themselves, but less so, during the next visitation period. They come and go, which makes them closer to stims. Perhaps?


Does this help? Probably not. If it is of any use at all, it is merely to illustrate, as always, that autistic children [and adults] exist on a spectrum. There is no one size fits all.

So let us leave aside the definition of the indefinable. What do you, as a parent, do about it? Well if I knew the answer to that I would be doing a much better job than I am! All I can say, is that whatever you call it, however you define it, it exists and you need to deal with it. When these little flurries occur, you have several options depending upon whether it is of a destructive nature, be that physical self mutilation or mental self mutilation. If your child is hurting him or herself, for me, there is no other option than to intervene, distract, redirect or cuddle. If it is ‘mental’ [translation – “I am dah bad one, I am stoopid, I have a bad brain] the choices are the same.

However, sometimes [translation = often] they are calming, harmless, positive. If you have a non-verbal child and they repeat the same sentence for 40 minutes or more, it may be intensely annoying but it’s strengthening they jaw muscles. [translation – and they’re having fun] It is harmless, it is calming.

Depending upon what they are perseverating on, I find it helpful to think of the behaviour as a minor skin rash. You treat the condition according to it’s severity. If it itches you scratch it. Often it is an unconscious reaction. If it’s a warm day you scratch it more often. Maybe at night, it doesn’t itch at all, or when you’re swimming. Sometimes it’s really itchy and you have to franticly scratch away, you may even bleed a little, but it will form a scab. I don’t want the scab to turn into a scar, by doing this too often, but scratching an itch every so often, doesn’t seem quite so awful as many would have us believe.

Sometimes, it is not calming. Sometimes it is the eye of the storm, accelerating. This can be a fearful experience. [translation = for the parent] But it is meeting a need. One parent may take a child out to exercise, exhibit some sporting prowess to release the tension. Another parent must stand by and watch the eruption of the vortex, so that the child may experience peace, expended. Intervention isn’t always what it’s cracked up to be. [translation = good]

When you witness your naked child hurling himself against a glass door repeatedly, as well as all the other direct incidents I’ve mentioned already, I tell you truly, that it is difficult to think ‘deep proprioceptive input’ and ‘how can we achieve the same result is a less destructive manner?’ If one is slow, deliberate and determined, whilst the other is a fizzling firework let off in the house, I may be the one person on the planet who understands that you may just want to throw up your hands and weep in defeat. [translation = especially if they do it at the same time] But I think you’ll find, that there are far more people around with similar experiences than you might expect.


I wish that there were easy answers and that I could point you in the right direction, but unfortunately, direct experience does not necessarily result in accurate data.

But how am I so different, with my little quirks and foibles, the need to have things ‘just so.’ The temperature of my tea, made in just the right way. The song that seeps through every brain cell, that I cannot turn off, that drives me to distraction but I cannot stop, although I don’t ‘voice’ it.

What about you? Do you have your rituals? Is your nose out of joint [translation – bummed] if your commute is disrupted? Bummed [translation = annoyed] by the lack of ‘signal’ from your cell phone in a dead zone. The unreasonable manic driver who cuts you off, that you would gladly hang, draw and quarter, so long as you didn’t have to meet him face to face, or his family. When swear words [translation –cuss words] rile up like bile in your throat but you refrain from articulating them aloud.

Maybe you don’t throw a hissy fit, [translation – meltdown] because you’re an adult and have learned what is, and is not acceptable, but the gut reaction is the same.

They are all a variations on a theme, maybe a trapezoid peg in a quatrefoil hole. Or maybe, the other way around?

This is a useful site with lots of "practical suggestions."

Transfer of skills - cross contamination

I wish it were otherwise, but frankly, most of the time, I find the whole autism thing completely mystifying. It's like a plot to trip me into senility early, well, a little bit early.

Take the simplest task, anything, go on, nothing too taxing. How about coaxing a grammatically correct question? A campaign to change 'what it is' to 'what is it?' Sounds like it ought to be feasible? After twenty minutes of sputtering I determine that I will fare much better if I refuel.

I stop into the kitchen with exasperation and decide that if I don't eat soon, I will probably expire on the carpet.

I think of a quick fix, big calories, small quantity, for speedy consumption and immediate energy boost. I grab the uncut loaf, cut a thick slice and match it with a dollop of Cambazola, even though it is chilled.

I hear someone commanding my attention, turn towards the dictator, but I can't wait another second for his words to formulate as I stuff the bread towards my mouth.

The smooshed, bread and cheese disintegrates on impact with lips that only part half a centimeter after jaw surgery. How could I have forgotten that I have not eaten anything 'solid' for nearly three months? I knit my brows at the small one, as he gathers himself to announce his announcement; "I was gonna be telling you dat! You cannot be eating it."

Multiplication

“Do they breed?”
“I’m sorry?”
“Breed?”
“Who”
“Lizards. I mean, not do they breed but how do they breed?”
I'm not convinced that his emphasis clarifies his question? I look into the bleary eyes of my husband. [translation = significant other] Is it morning or night, if you return home from work at 3 and it’s still dark?
“Well don’t quote me, but I have my suspicions.”
“Do you think we should check on-line what sex they are?”
“I’ll add it to me ‘to do’ list if you like. Put your mind at rest.”
“Don’t you think that one is looking a bit pudgey?” We peer into the aquarium.
“What it is?” pounces Junior.
“What is what dear?”
“Dah ‘pudgey’?” he blurts.
“Fat.”
“He is not dah fat! He is dah cute.” Never insult a lizard regardless of the time of day.
"Maybe he's about to have a growing spurt?" I offer.
"Maybe, perhaps grow a bit longer."
"Dey don't shed, it is dah "snakes dat are shed," not lizards."
“That’s as well as may be,” spouse adds, raking his hair. "Let's not get bogged down in "that" again."
“What it is?”
“What is what, dear?”
“Dah ‘may be’? It is dah same as dah ‘maybe’?”
Spouse leans on the edge of the table, fingertips tented and breathes deeply. He swallows a yawn at five minutes past six in the morning, before continuing, “well he may also be pregnant.”
I look at my husband. He looks at me. His eyes widen, slightly. We both know, that it didn’t come out quite right. We look at junior and wait for the question.

It doesn’t come. Instead he asks “how many?”
“How many what dear?”
“How many dah babies he is having? Er…….eggs dat are havin dah babies inside of dah shell?”
Oh great. Just great.
“I’ll leave you to explain that one dear, I have toast to burn.”

Breakthrough - carnivores gnash their teeth

A year onwards from where we were last year. Chipping away at "neophobia."
[translation = a diet containing less than 20 foods]

We have been going great guns. Junior is now consuming oatmeal, pasta, rice, and applesauce. That constitutes four new foods! Feel free to congratulate us and send us your heart felt best wishes.

I know the campaign has been hard, months actually, added to every meal of the day, but it is beginning to pay dividends at last. Maybe he’s not really eating it as such, but those items do enter the oral cavity. He’s still at the 'spitting them out afterwards' stage, [after we’ve counted to four,] but it constitutes movement in the right direction. We count more slowly now too, which makes it more agonizing for him and for us, come to think of it. We try and persuade him to close his mouth, lip touching lip during the count, which is a great advance as you it is difficult to scream if your mouth is shut. [translation = more of a muffled drowning sound] Every time the mouth opens and the screams leap out, we advise him to close them again and begin the counting again, from one. Otherwise it doesn’t count. [translation = would be cheating of course]

Personally I think his therapist is getting a bit above herself. There’s ‘positive’ and ‘enthusiastic’ but there’s also ‘are you completely mad!” I think I managed to cover my surprise quite successfully at the time, when she suggested that we should put the pressure on and make him try meat. Yes! Meat! Has the woman taken leave of her senses? Is she completely insane or merely certifiable? My eyes are wide but I keep my lips firmly clamped together as I process this suggestion. Turkey? Perhaps a little beef? Now I know she’s lost it, but I smile cautiously giving the illusion of agreement and consensus. It’s not as if he’s a vegetarian by choice as such. In fact,if you consider his fish consumption this is clearly untrue, although categorizing ‘goldfish’ in that manner might be a bit of a stretch.

We leave occupational therapy with our four little tubs of tester food; oatmeal, pasta, rice and applesauce. I strap the children into the car, deep in contemplation.

Meat? Turkey, chicken, lamb, beef? What is the blandest, most textureless, flavourless meat on the planet?

Of course! Hot dogs!

I worship the ground that their little American feet walk on.

Change of Name Deed

I wait patiently, lurking in the shadows, as my boys hang over the edge of the aquarium, bidding a fond farewell to their reptiles.
“We love you ickle wickle ones. Be good boys why we are away!”
“Dey are not boys, idiot!” admonishes one non verbal child, to the older but more severely speech delayed child. The soothing tones with which they coo, are reserved for the animal kingdom. Mankind, does not fair so well in the humane department.
“Do dey have food?”
“Yes, idiot. Look dey have dah healfee foodz!” blurts the neophobic one. He may not eat any of it himself, but he is more than capable of appreciating what a healthy diet might consist of.
“Look at iz lickle claws! Day are so cute. Ain’t you jus dah little gorgeous one!”
“He dah beautiful. He is dah stripey. We love him cutsie wootsie one.”

Oh please! Get on with it won’t you boys. How many compliments can a few small cold blooded creatures take? Don’t you think you’re going a bit over the top? The ‘compliments’ lesson with the speech pathologist, was weeks ago now. How come this skill has to percolate through to the surface right now, just as they’re about to go out. Couldn’t they have delayed the arrival of this skill until they arrived at the restaurant? Couldn’t the average over worked, underpaid server, benefit so much more greatly from the odd kindness? Why waste all these words on reptiles?

Spouse yells at them from the garage, ‘now or never,’ to lure them to the car, to take them to the restaurant, just the four of them, whilst I wait at home, the non eating member of the party. They scamper past me in a blur. I scamper after them just in time to see the garage door close. Hey! What about me! Don’t I get so much as a non verbal hand wave?

Talk about immature, attention seeking behaviour!

I’m seriously thinking of changing my name to ‘lizard.’

Back in a Jiffy

I nip out to Target to buy a gift token for the birthday party tomorrow. As I drive in the rain, I reflect over the holiday week that we have just enjoyed. Back to back play dates and small people everywhere.

This is the first 30 minutes that I have had truly alone in 8 days straight.

Poor spouse has been working throughout that time, including Easter Sunday, rarely returning before 1 in the morning and yet still managing to be on time for work at 8 every day. Poor spouse has averaged 3 to four hours sleep a night, as the children, all of them, are on erratic sleep patterns, which involve frequent visits to our bed. Poor spouse.

During these intervals we have discussed the ‘project at work’ in great detail, although our cognitive skills are challenged in the wee small hours. Poor spouse.

I have enforced the ‘no electronics until 5, IF you are good,’ daily. Apart from the odd trip to the supermarket, I have been bereft of adult company. I have had to content myself with spitting words at a wide variety of people under the age of 9, as well as fielding cogent questions about teeth, braces, elastic bands and international dental care. [translation – my children’s typically developing children with full powers of speech and enquiring minds] I may only be a ‘one man band,’ but the tune has been fairly melodious. The discordant cries of ‘where Daddy is?’ denoted divided loyalties.

I return home 25 minutes later, anxious that poor spouse should not be over burdened with child care responsibilities in his weakened and weary state. As the garage door rattles closed I hear other noises in the interior of the house. In the interior of the house, I see small people wired in to their various electronic devices at 2 in the afternoon. I also hear those little independent electronic devices wittering out their individual annoying tunes. It is a scene that looks so "deceptive."

Bear in mind, that these are children would remain wired in and tuned out, from now until the next Ice-Age, if I ceased to be on the scene. [translation = not the movie, and ignore global warming for this purpose only]

I see poor spouse with his face reflected in the computer monitor. I step closer. Even on this rain filled day, there is enough light for my shadow to darken his view. He lifts his face to mine in vacant acknowledgement of my presence. His children do likewise.

My vision turns crimson. I contemplate murder suicide, shortly followed by murder and blissfully merry widowhood. I think of blue calming things, such as an ice pick. I practice controlling my airflow, but breathe fire. I step back into the kitchen to regroup.

I consider my options carefully, as I do not wish to ruin a potentially ‘good’ weekend by having a paddy. [translation = throwing a hissy fit]

Stage one – determine whether or not spouse’s computer is perseverating upon work issues or play issues?

I march towards spouse and peer over his shoulder to read the screen = play! Ha!

I adopt a jolly sergeant major tone and speak in a voice loud enough to be heard by each member of the family. [translation= family member] “And what do you suppose you are doing?” I ask him rhetorically. The children recognize the tone and turn towards us. Spouse blinks and parts his lips. I ensure that my eyes are opened to their maximum capacity before continuing, “you know the rules, no electronics until 5!” I pull the power cord from the socket with a flourish. Three children erupt with glee, cast their electronic devices aside and roar guffaws at their father. Mass hysteria ensues, to the non-verbal, yet audible chorus of “if yur gud!”

I suspect that "Kal" doesn't have these issues, even though she has double trouble too, with twins no less. But there again she's won an "award."