Blink of an eye – Tuesday supplemental

Not so long back, they started Pre-school and such like. Their exposure was staggered. 30 minutes for the first day. Internment with constant screaming. The time was gradually increased until a whole morning of three and a half hours was achieved.

Now as they start 4th, 3rd and 2nd grade, I rather think that this would be a good approach again. It seems grossly unfair that they should be expected to spend a whole day in school, 6 hours and 25 minutes. Draconian. They should be allowed to gently ease into the new school year by small increments, after weeks of idleness. It's not that I won't enjoy my child free hours, it's more a question of sharing. Recently, my eldest son has been talking prodigiously, for a whole 4 days in fact. This means that for the many other days in the long summer holiday, he wasn't. I need to rewind the summer holidays to the beginning, so I can have the benefit of all those missed talking days. Why should the school get them instead? Maybe I could rewind to when he was two and a half, a re-run? Then it was that all the lovely little baby words started to fade and fizzled out like a damp squib.

I have no evidence in support, but after 8 years, I know that the school squanders his word bank during the day and then returns my son to me, silent. I am not a good sharer. I content myself with the knowledge that the first fortnight consists of two four day weeks.

I focus on the label of the liquid multivitamins, give up and take a glug to wash down a couple of Ibrupofen.

I pick up the abandoned play things, the toilet brush, screw driver, curtain pull and magic wand. I look across at the bank of idle timers on the table that have no-one to sequence, coax and calm. I need a complete rest. Six hours and 25 minutes.

Instead I commit myself to hard labour in the garden because my cherry tomatoes have a personality disorder. They've invaded the Honeysuckle . I need to prune their ambitions as they dangle over the 10 foot fence. Maybe? I dither. I decide to conduct a scientifically, controlled experiment. How long does it take to turn your body into a pickled walnut? Bath or shower? I pick up the timer, the egg one. I set it for two hours and 15 minutes. I don't want to forget that appointment at the manicurist. I turn the timer on and my brain off.


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Drones – message received and understood

A chum of mine, [translation = British] refers to her daily life with her autistic child as 'Groundhog days.' This refers to the film where the actor repeats the same day of his life, again and again without apparent end. Parents of young children often repeat the same life lessons until they are acquired, but for autistic children the process may take longer.

Last summer one of my boys had a chance encounter with a bee. The bee and my son were outside the house, in the garden at the time. [ translation = a rare event, now sadly, all the more rare as a consequence] The bee did not attack him. As my son floated in the pool so did the bee. The bee was in it's last death throes when they happened to come in contact and it stung him. My usually silent son, made known his condition. Fortunately he removed himself from the pool prior to his quite reasonable meltdown. [translation = otherwise he and the bee might have come to the same untimely end]

He survived, the bee did not.

Thereafter, again quite reasonably, all insect life became untrustworthy. [translation = a source of fear] Although he has endured many hours of vision therapy, his ability to accurately determine what something 'is' varies. [translation = if in doubt, stay well away] Our daily meltdown count was still quite high a year ago. This additional trigger, began to make life unbearable. [translation = Summer produces a higher incidence of fast and slow moving creepy crawlies and flying insects]

Something had to be done.

Sometimes, logic doesn't work. Fortunately for me, one of my sons is keen on rules. [translation = reflects the need to place order and form on chaos] In such situations, the best thing to do is lie. I highly recommend it, especially if you have already used up ALL the usual arguments in your favour.

……….. …… …. .. .

“BEE!!! BEE!!!BEE!!!”
“Yes, it is. Tiny bee, big you. Who is most scared?”
“ME! Bee! Bee! Bee!”
“Do you know that there is a rule about bees?”
“Rule?” Aha! The magic word. Now what is the rule? Think of a rule! A helpful rule. The right rule. A rule that will work and not backfire and make the situation worse!
“Yes. The rule is……..you know how a bee dies after it's stung you?”
“Yes.”
“That's one rule. But the other rule is….. that……every person in the world is only allowed to be stung once per lifetime.”
“That is rule?”
“Indeed it is. Everyone knows that rule. I have been stung, Daddy has been stung and now you have been stung, so you will never be stung again. Otherwise it wouldn't be fair. Would it?”
“Stung is dah same as sting?”
“Correct! Good thinking!”
He looks at his sister and brother, “they are sting, er stung…er…stunged?”
“No.”
“It their turn sting?”
Oh dear! I dither, hoping that other small people are out of earshot.

Overall, he is dubious, but placated. Bee phobia diminishes considerably. [translation = over time and with the changing seasons]

We move forward a year to a day when a wholesome looking young lad and his crew come to deliver my replacement sofa. Spring has sprung and the Spearmint bush in the front garden is a glorious mound of white spiked blooms. If you look more closely or open your ears, it is easy to note that there may be as many as a hundred bees labouring away. Mr. Wholesome is engaged with the removal of several miles of plastic wrap from the furniture.

My son observes him from the front door, half in and half out. [translation = keen to make a new friend, fearful of an old enemy] Mr. Wholesome's attention is drawn to the buzzing noise. His eyes are of additional assistance and track across to pin point the location of the sound. At the moment that his brain registers the bees, his body ignites as he stumbles back to pin himself to the white picket fence. [translation = the effect of a burning bush] My son reacts also and flees, for a second. [translation = a perfect reflex to perceived danger] This is the same child who walked into walls that he didn't notice, would not reconise me if I took my glasses off or wore anything other than blue jeans and a white t-shirt, and has a high pain threshold.

His better nature catches up with him. He gallops over to Mr. Six Foot Two, cowering but not impaled near the fence. “It's o.k., it's o.k., it's o.k., don't be worrying, they are not be harming you!” As he says these words he approaches Mr. Wholesome on soft feet. [translation = the same way come close to an injured animal] “It's alright now, I'm here, I'm here, I'm here,” says Master Four Foot One. Mr. Wholesome's gaze flicks between the bush and the boy as he wraps his arms around himself. His biceps pump and flinch, whilst his knees quake. “You can be dah brave one now. Look at you. Tiny bee, big you!” [translation = with appropriate hand gestures to assist a potential visual learner]


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The lowest common denominator [translation = use it or lose it]

[from a couple of weeks back]
Whilst I am allergic to exercise in any shape, form or description, if forced, I would come down on the side of the sprinter. Short bursts of energy and enthusiasm. If such a strategy doesn't work, then give up. This is not a good parenting style for the autistic child, where consistency and persistence are required over long periods of time.

I emerge from my steaming pit [translation = bed] after surgery. I adopt a vertical position and stumble downstairs. I find my three youngest children draped across various pieces of furniture clutching electronic devices, semi naked. I attempt a verbal greeting but it's not loud enough and has no impact. As they are content, I make do with bodily contact, a hug that is shrugged off as interference, a stroke of the hair which is flicked off like a wasp and a caress for the one with no nerve endings.

The home help has been hard at work. Almaz has ensured that the house is clean and tidy. Three lunch packs are stacked neatly on the counter. She is a gem, tireless, dedicated and hard working. She dresses them, cleans their teeth, picks up after them, feeds them with a spoon. They have no responsibilities, no chores and no input into their own lives. She is their slave – they adore her.

I consider the time of day. I suspect that my inert children have been engaged in this activity for hours. [translation = plural] I recall that it has also been peaceful enough for me to sleep, which confirms my worst fears.


The Gameboy, Gamecube and telly, are used specifically to elicit compliance. They are motivators, powerful ones. Over a long period of time, you can use these 'bribes' to achieve extraordinary things, such as toilet training, eating, or trying to eat a new food, wearing clothes, or maybe keeping your clothes on. As long as you pick something specific [we'll do this homework sheet /homework question together and then….] the results can be miraculous. As with most matters, it is not a quick fix. You have to start with a small, discrete task that is within their capabilities, with the rigid application of the rules that you have determined to be equitable in advance. If you bend the rules once, the whole matter quickly unravels and you're back to square one.

It is therefore with some alarm, that I realize that two and a half years worth [?] of painstaking progress has dissolved into a cats cradle. I would like to describe these tasks as 'my winnings,' but to be more accurate, they are 'triumphs of achievement, the culmination of the acquisition of specific skills, and a demonstration of the remarkable accomplishments' of my children. Or they were.
I can feel my fat lip quiver and my piggy eyes sunk in my swollen face, begin to leak at the thought of square one. I do not like square one, the square of several years ago, I much prefer square 7, where we were three weeks ago, prior to surgery.
I remind myself to 'pull myself together' for fear of betraying myself to my children.

Then I remember that I am invisible again, out on the periphery, that I have inadvertently renewed my membership to the irrelevant, relegated and forgotten. A selfish viewpoint. My children are tuned out, turned off and internalized. An even more selfish viewpoint.

I must quickly transform myself from invalid, to taskmaster. I have no option but to take up the reigns and become 'the enemy' again. It is not a role that I relish. I would much prefer to lounge around and just let them be. I would be happy to let them exist in their electronic wordless world. A life free from school, therapy, people and verbal communication. A world with French toilets, the 'hole in the floor' kind. A monastic silent nudist colony, in an video arcade, where junk food snacks are freely available for refueling purposes only.


The strains of Frankie Laine’s ‘Rawhide’ whisper through my brain ad I start hunting for my dusty whip, ready to renew the marathon.


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Pneumonia – the end and the beginning

I stagger back from the doctor's office where spouse is holding the fort. “So do you think we should explain to them why you're malfunctioning?”
“Malfunctioning! I'm just ill, that's all. I'll be as right as rain once the anti-biotics kick in.”
“That wouldn't be a very helpful explanation to them though, would it? You'd get yourself in no end of trouble explaining it like that, you'll need to re-phrase it.”
“Yes, you're right. Keep it simple. Any ideas?”
“You're always better at explaining than I am.”
“Oh, I don't know.”
Spouse gathers the troops so that I can preserve oxygen. I explain with a big smile on my face. I await questions, hoping that there won't be any………………….

“Why it is new? Why it not old?” sparks the literal one.
“Not 'new' dear, it's pneu – here let me write it down for you.”
“Pneu! That is the stoopid one. Silent 'n's are in 'gnat' and 'gnaw' and oh! That's right! You are not the bad one afterall. 'Pneu' is in 'pneumatic' too. You are not the big fat lying one! I am forgiving your stoopids.”
In confirmation he darts behind me, lifts my shirt to plant a kiss of compensation in the small of my back.

“You are ill? You are dead?” queries the anxious one.
“No, I'm not dead dear, just ill.”
“Not dead?”
“No. Not dead.”
“When you are dead den?”
His sister intervenes as I become short of breath,
“Remember, nobody dies until they're at least 90 and that's ages away.” What can I say? Ninety seemed like a good compromise at the time.
“19! 19? 19! iz not a big number. 19 is a small number. I hate it, it's bad, I don won you to be deaded.”
“Not 19, 90 you stewpid head, why don't you ever listen properly,” she bellows because this conversation seems to be upsetting for everyone.
I put one arm around her and pull her in close even though I should probably correct her.

“Now listen! Do you remember the blue tape?” I point the kitchen cabinet where handy reference photographs accumulate. It depicts the conclusion to this same debate six months ago when we experienced difficulties with ‘time and death.’
Since it is a recurring theme, I thought it best to keep handy.
It shows blue masking tape running from the kitchen to the stairs,
marked with numerals from 0 to 99.
It is a magic visual cure for this particular anxiety,
or at least it is for now.

Sometimes you just wish you'd never
started in the first place.
Maybe I should have avoided this whole
quagmire and stuck with 'malfunctioning.’

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