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, …… 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.'

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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.

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Perseveration – what it is?

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.”

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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.”

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“Do they breed?”
“I'm sorry?”
“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.
“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.”

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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.

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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.'

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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.”

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Perseveration with a sprinkling of OCD [on the side]

“I don't think he cares one way or another, as long as they serve chips. [translation = French Fries]
“True, but so many restaurants don't have any cruet.”
“I know, but there again, if they have anything, they usually have the salt.”
“Unless we go to an Italian, then you have two foot of pepper mill being lobbed around by some minor, but not a salt cellar in sight!”
“Odd combination really. There again, if we go Italian, there probably won't be any chips either.”
“It's so strange.”
“Strange. A very strange country.”
“Mind you, if he carries on the way he is, we could probably do with avoiding that particular perversion.”
“True, I don't think people understand.”
“Well it's so unhygienic, regardless of the other health risks.”
“Still, nobody noticed last time.”
“That was over three months ago now, and they did, notice, that is to say.”
“The last time we went to a restaurant?”
“Yes. So he's not really had the opportunity in the meantime.”
“Do you still have the salt cellar locked up?”
“Oh yes. Stuffed at the back of the cupboard, the one full of cereal.” [translation = disguised by the horror of the equivalent of barbed wire, that is breakfast cereal.]
“Oooo! I’ve just thought! Do you think we could count it as a ‘new food’?”
“Food? More like a chemical or an additive.”
“I like that. We count the additive.”
“Well, I don’t know, might be considered cheating.”
“Well if salt is a chemical, then so is water, H2O and all that.”
“Gosh. I just had a thought too! He drinks water. Water isn’t part of his 13 foods.”
“You’re a genius! That means we’ve hit 14 foods without even trying.”
“How come we never thought of that before?”
“At this rate of progress, he won’t be a neo any more.” [translation = neophobic, a person who eats less than 20 foods]
“She didn't look very happy at the time.”
“The server.”
“Which server?”
“At the restaurant.”
“Right! When she lifted the tablecloth to see a six year old chugging down on a salt shaker.”
“Hmm, I think it was the other three empty ones that he'd stolen from the other tables that freaked her out.”
“Just think, he'll live for ever, like a little pickled er………”
'No, er……?”
“Pickled egg? Roll mop herring, pepper, walnut……?”
“Hardly! And none of those are American.”
“What then?”
“Oh I know, Gherkin!”
“Ah! Dill pickle! Actually, they're all in vinegar. H must be more like an anchovy!”
“Hmm, he's certainly swimming against the tide.”

Health Warning – each salt cellar only a few grains in them
Healthy Note – many children and some autistic ones, enjoy lining things up
Caution – don't try this at home. [translation = or in a restaurant]

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Just typical – social skills and the autistic child

[Fast forward to real time for my annual gloat]

Of course the disappointment stems from faulty expectations on the part of the parent, but it stings none the less for that. I think most parents find that the pin pricks of their children feel like personal stabs. It's part and parcel of being the adult. If you are the adult, then it should be you who is the rational being and dismisses these petty hurts.

When you see the real glee in the typical child's eyes on arrival for a play date, your chest swells with vicarious pleasure. When you explain that 'electronics' are not permitted until 5, you also recognize disappointment in the visitor. The declaration of universal boredom, coupled with discrete enquiries as when mom will be collecting, tells you really all you need to know.

But it is delightful to clock the social skills of your own children, as they attempt entertainment, joke telling, alternative toys and different options. Each accommodation is offered verbally, in a reasonable tone of voice, evoked from genuine concern. They also cope with the repeated rejection, that nothing is acceptable. But when the sulks come on, I have to acknowledge that they have reached their current limit, as they have exhausted their stock of social skills. Their bank of social skills, is larger than I had appreciated. They look at me for a cue or possibly a clue. The guest hides under the stairs, but he is young. I guide my boys away to let him cool off.

Admittedly this is a best case scenario, when my boys are on their own home territory. They may not be able to repeat the ‘exercise’ elsewhere. [translation = inability to generalize skills] As a pair, they were able to help each other fill in the gaps and probably would not have done as well on their own. Nevertheless, in my mind it is a coup.

When the coast is clear, I see him run upstairs to join and play with the other typicals. I know that he will re-appear at the stroke of the hour, like magic, ready to turn on the charm again, as well as the 'electronics.'

All children have 'off' days, [translation = bad ones] but it wasn't my children who sulked. They’re so few and far between, those opportunities to crow, so I hope a small gloat, once every 12 month, doesn’t count as a mortal sin!

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