Danger lurks around every corner

I take my youngest autistic son to the supermarket with me. [translation = grocery store] To say that such an errand was akin to punishment, would be an understatement, but I am out of options today. Like most children, shopping is one of his least favourite activities, [translation = me too!] but malnutrition is but one missing meal away.

I have carefully chosen an alternative store. This alternative store, has one overwhelming advantage over it’s competitors, one that the store owners are probably blissfully unaware of. The shop has electric doors, which are the bane of many a parent’s life. [translation = they’re open, they’re closed, hop in, hop out, get in the way off all customers who arrive or leave, as they are invisible, chortle merrily throughout]

However, in this particular sanctuary, the electric doors have foolishly been located in close proximity to the produce section. [translation = fruit and veg] Few things are as obnoxious as fruit and veg, to my son. The stench of produce is more than sufficient to curtail his door activities, or at least that is what I am hoping.

The produce department has long been an area of fear and dread because periodically, water sprays down upon the lush vegetation, a mist of glistening droplets. Whilst for most people this adds to the enticement, for others it is a deterrent. [translation = sensory] Should you see a small child scream and run for cover amongst the boxes of green bananas under the tressel table, clearly he is a hooligan on a quest to trample fruit. Or even a larger child for that matter.

I have only three or four items on my shopping list. I encourage his help but he will have none of it, nor will he touch the list. He won’t touch the small piece of favourite yellow coloured paper, because it is paper. [translation = tactile defensiveness, but we’re working on it] Additionally, my list is hand written and fails to meet his standards of cursive letter formation. [translation = I imagine that he would find fault with the copperplate of monks too]

I nearly trip over a basket that some idiot has abandoned in the middle of the aisle. Why do people do that? The inconsiderate nature of the general public never ceases to amaze me! My son chortles, “Elliot is idiot, Elliot is idiot, Elliot is idiot.” His scripting is right on target, which is excessively irritating. [translation = many speech delayed children use clumps of words that they collect from here and there. More often than not, the spirit of the phrase is accurate, like a dart.]

To distract himself from the pain of shopping, he reads every label aloud, loudly. This innocent pastime engages him as he bolts around with his arms folded across his chest in a protective gesture. He startles and jumps at things that I am unable to identify. [translation = hyper-vigilance] In the dairy aisle he fondles eggs and cooes gently at them. Strangely, eggs, any eggs, are always soothing to both the boys. It is as they have magical powers, even though neither of the boys eat them. This is the calmest 7 seconds that we experience.

He queries labels and harangues me with questions with every step. For every step that I take, he takes ten, rushing around in the style of a skateboarder. I choose my last item. [translation = grab something that looks vaguely like what I want and hurl it in the basket] “We are done?” he sparks.
“We are.” He accelerates off in a tail spin to the bakery department to choose his treat. [translation = task completion and reward time, for holding it together for 12 minutes]

He skids to a premature halt aghast at the view. I look at the cakes and notice that each set has a hand written label. [translation = it would appear that the bakery does not employ monks] He covers his mouth with his hands and bounces on the spot. [translation = a dilemma of the tallest order, how to look at the cakes and yet screen out the offensive labels?] He agonizes for a few more moments before a bolt of spare bravery comes to his rescue. He takes one long single step, very slowly, to bring his body close to the glass. He stands rigid with his arms close to his sides and his eyes closed. He breathes slowly and deliberately. When he’s ready, his eyes snap open and absorb the cakes.

“What is it?”
“What is what dear?”
“Petit?” Oh dear, a new word, a foreign word. Do I want my son to learn foreign words at this juncture? Other than “Brioche?”
“It means ‘little’ dear.”
“Why it is four? Why it not three?” [translation = his current favourite number]
“It’s the name of a cake dear, “petit four,” means little cake. It’s French, a different language.” [translation = actually it means ‘little oven,’ but I didn’t know that at the time] He mouth starts to move, he puffs and blows like a steam engine pulling away from the station.

“Dat is dah most stoopidest…….”

Oh dear. A level 8 meltdown ensues to the horror of all the surrounding shoppers. At six and a half, he is too large to be rolling around on the tiled floor screaming. There are too many feet and too many table legs for this to be safe. I have no option but to scoop him up and retire to edge of the wall.

Seven minutes later he has still not regained the power of speech, but he is able to lift an arm to point. I follow where his index finger indicates. The sign on the cakes reads ‘Large Petit Four.’ For him, to have ‘little’ and ‘large’ in the same description, on the same label, is too much of a contradiction for him to be able to fathom or tolerate.

I decide to give it best. [translation = admit defeat] I leave my basket of four items un-purchased. I carry my son, limp, exhausted and ever so slightly damp. [translation = ignore the rule about ‘no carrying under any circumstances’ = another campaign failure] Surely there must be something edible in the freezer at home that I can unearth? I sneak one of the cookie samples for him as compensation. [translation = and pray to the basket collector to forgive me my idiocy]

Recently, someone, probably ‘anonymous,’ implied that I might indeed be losing my grip on my rather tenuous sanity. Should you care to share your own opinions on this vexing matter, please comment upon whether I really do have a “screw loose.”


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Oral Defensiveness

Some days after the truffle debacle, [see previous posting] I learn something scientific. When the weather is cold, ganache, when mixed with toasted hazelnuts and spittle, reformulates it's molecules into cement. Conversely, when the central heating is on, wafts of chocolate permeate the air, goblets liquefy and form steady rivulets down the furniture and walls.

I am also reminded of a rule that I have known about for approximately 5 years. Although a flavour may be preferred, when it competes with texture, texture always wins. It is hard to describe the emotions that run through a mother's heart and brain as one observes the conflict. Good mothers exhibit horror and concern at the agony inflicted on the child. Lesser beings endeavour to suppress giggles. I must admit to taking no ameliorative action, merely let the experience run it's course. It's is hard to reason, contain or communicate with someone who emits sparks whilst dancing on red hot coals.

Mastication is not one of Junior's strong suits. His jaw muscles are on the feeble side, and his lip closure is non existent, except on high days and holidays. Aversive textures when introduced into the oral cavity, have the effect of provoking him into a spectacular 'rain dance.' If there is any doubt in my mind that this aversion is likely to be resolved in the near future, I only have to watch this battle with my own eyes.

His nose and mouth register the delightful flavour of chocolate. So finely honed are these senses that he is able to detect whether or not the chocolate is Swiss or Belgium. Both varieties are acceptable. Anything else is not, although we are making strenuous strides in the Ghiradelli department. So the taste buds are cooperating, but the receptors that register texture are rebelling. Hazelnuts, toasted or otherwise, have texture, a 'bitty,' granular texture, that is difficult to ignore. He is able to differentiate between the two but not separate them. If the ratio of ganache to hazelnuts is approximately 60:40, the average mouth would be hard pressed to separate one from the other. A substandard mouth, is overwhelmed with competing messages; 'Texture! Spit it out! Yummy chocolate! Swallow now!' Not an easy one to resolve for the best of us.

How does this conflict manifest itself? Well obviously we have to have a great deal of screams, as word formation is lower on the hierarchy. He needs to ensure that the volume of screaming, approximates the agony that he is suffering, namely loud.

When something is attacking you, the best ploy is to run away. Whilst this may be the lowest common denominator, it is also a sound theory. Not a very effective one in this particular instance, but that aside, running all over the house screaming trying to escape from your mouth, smacks of a basic internal logic.

Admittedly his fingertips are very sensitive, but they can on occasions, if pressured, also be very brave. Hence it is a good idea for him to use his fingers to help empty his mouth. Although he practices spitting regularly, he's still not very good at it. If your spitting powers are inadequate, you end up with whatever you have expelled from your mouth, all over your chin and front. Making raspberry noises to assist with elimination, is a great variation on a theme, but ultimately ineffective.

Fortunately we are in a modern house with faucets, so cleansing his mouth under the running water is a great proactive gesture. The drowning, screaming, gurgling noises take a little getting used to, but it's all moving in the right direction. Once the wet chocolate covered clothes have been removed he is in a more vulnerable situation. At this stage he resorts to electric chicken noises, an indication that he is about to reach the peak of his endurance. I hand him a wash cloth soaked in tepid water. He stuffs it in his mouth and collapses on the kitchen floor. His rib cage rises and falls, but the rest of him is a rag doll. When his breathing returns to something that approximates normal, he unplugs his mouth to say,

“you know, I am too tired to do dah deal.”
“What deal?”
“Dah dealing of dah cleaning dah spit truffle.”
would like to follow through. I should follow through. I should make him clean it up, or at least try to clean it up. He rolls over on the hardwood floor into a foetal position. He is asleep in seconds.

It's an exhausting life, this food business.

Post script – should anyone find that they are sniggering, please leave your details, as I may need to call upon your indulgence, as a character witness for my next interview with the Child Protection League.


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Keep it simple Stupid!

Over the years I have learned a great deal by trial and error, predominantly error. Mistakes are great because those are the lessons that you learn best and never forget. Two immediately come to mind. If you fail to pierce Chestnuts when you bake them , they will explode and make the oven impossible to clean. It also traumatizes the feline population. In a similar vein, there is no point in trying to pierce the yolk of an egg, if you want to cook it in the microwave. It doesn't matter whether you remember this step of not; if the egg explodes it is inedible, if it stays in tact it is also inedible.

In my new life I have learned to simplify my life, lessons and language, to basically use less words. Although I have a tendency to overlook this fundamental.

Junior appears at my side, as I am knee deep in chocolate, making truffles. He sniffs with melodrama and sighs winsomely,
“Ah I can smell it I fink.”
“Good.”
“What you do?”
“I'm making chocolate truffles.”
“I am loving dem. What is dah 'truffles'?”
“Candy.”
“I love dah candy truffles.”
“No you don't, they have nuts in them.” He gasps in horror and simultaneously clamps his hands over his mouth.
“I fink I might be liking them anyways.”
“Nope, peanuts are poison remember.” I am cruel to remind him of his screaming mantra.
“Dey are peanut candy truffles?”
'No. Actually they're toasted hazelnut ones, but you hate 'toast' remember. 'Toast' is 'burning fire' if I recall correctly.” Too many words! He gasps and clamps again, enveloped in wafts of ganache.
“Peanuts are poison, hazelnuts are…..they are……not da peanuts.”
“They'll still be 'bitty.' Can't have 'bitty' can you, you might melt, or whatever it is you do.”
“I am not melting with dah bits, I am spitting with the bits.”
“Fair enough, I stand corrected.”
“You are not standing you are, what you are? Oh yes, you are slouching.” Deportment is everything!
“Well that's as maybe, but if you think I'm going to be cleaning up chocolate nutty spit for the next half an hour you've go another thing coming my boy!”
“How about dah compromise?”
“Pardon?”
“If I am dah brave one wiv dah bitty hazelnuts, den I will be cleaning up my own spit if dey are poison?”

He is offering to
a] try new food and
b] sterilize the aftermath!

Sounds like a deal to me. High five.


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Holiday Survival

OED Online Word of the Day
survival SECOND EDITION 1989
1. a. The continuing to live after some event (spec. of the soul after death); remaining alive, living on.

I am told that goldfish, the golden orange pet kind, have short memories. One circuit of the bowl and the 'seascape' is all new again.
One thing about holidays if you have autistic children, is that it is no holiday for the parents. If the parents permit the days to become holidays, either for their own benefit or that of their children, you can pretty quickly find that they regress a few months.

It is during dinner of spaghetti, meat balls, Marina sauce with a sprinkling of Parmesan that I remember, that in theory Junior 'eats' pasta. I look at him troughing down a bowlful of Goldfish. How could I have forgotten that he mastered grains of rice and blobs of pasta some months back? How can they have already slipped out of his repetoire when they were only there a few weeks ago? Seven months to acquire two new foods and a blink of an eye to lose them again.

The following day I determine to reintroduce pasta. At lunch I present him with three pasta shapes, tiny goldfish shapes at room temperature. Spouse follows the screamer as he hurtles upstairs at full volume, “no, no, no, no new food, it is dah holidays, no new food.” I can hear spouse trying to mollify him, remind him that 'pasta' is not a new food but an old one, but he'll have none of it.
We go back to first principals. [Ref 1] Firstly, he has to look at the item of food. This means that his eyes have to be open, not screwed up. The ceiling doesn't count, nor two inches to the left of the bowl that holds the food. Once your eyes at least glance at the food, you have to describe it in detail. 'Yucky' is not sufficiently descriptive, even if you have a speech delay.

The new food, is presented five times a day, at three meal times and two snacks. It doesn't have to be eaten, it just has to stay on the plate. [translation = exposure] Hurling it, with or without the plate, across the room, doesn't count.
We move swiftly on to stage two – sniff the food. Blowing your nose in the food's general direction doesn't count.


Next we touch the food, with a less preferred [translation = less sensitive finger tip] finger. Elbows are banned as they generally have insufficient nerve endings to have any impact on the sensory system. It is o.k. to wipe the contaminated finger tip on as many paper napkins and serviettes as may prove necessary. Washing your entire body, is off limits. As a precautionary measure, clothes are compulsory.
Next we attempt licking. This is usually a louder stage of the treatment. Ear plugs may be worn. Wash cloths for the cleansing of the tongue, should have been prepared in advance. So far, so good. We move into the final phase. The new food must go into the mouth whilst an adult counts to five. [slowly] In an ideal world the 'eater' should attempt to move the food item around in the mouth, although masticating is optional. An open mouth with a protruding tongue doesn't count. On the count of five, the spit bowl is ready for expulsion.

Fortunately this 27 minute operation only need be repeated two further times. Luckily, junior prefers his food at room temperature.
Moral – use your foods or you'll lose them.
[ref 1] Just Take a Bite – apologies to Lori Emsberger Ph.D the writer


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Little Jack Horner wasn't neophobic

In America if you do something twice it automatically qualifies for 'tradition' status. In other countries 100 years, would be a more common measure. [translation = and don't skip a year or you have to start again from one] For current purposes, I suspect that we may have formed a teeny tiny American tradition of our own. Every year on Thanksgiving, we troll around to my American pals' house. We go at the end of our day, [translation = early evening, supper time as opposed to dinner time] to join them for pudding. [translation = dessert]

This is a household of pies. [translation = a regular old American kind of a home] They have pies of every kind, each one more foul than it's fellow; pecan [gets stuck in the braces] apple [too sweet] and horror of horrors, the truly revolting pumpkin pie. [translation = take violently orange coloured root vegetable and hide it in pastry {sub translation = which is where it should remain in my opinion, hidden, that is to say}] I should point out that I am in the minority of one in my own household.

Yes, my pal is very bright. [translation = smart {sub translation = NB 'smart' = well dressed}] She deliberately sought out to corrupt my children at the earliest opportunity. [translation = convert them to the American way] Now I have five pie eaters to contend with. There again, one day in every 365 devoted to pie shouldn't be too much to ask?

We sit around their American table [translation = large enough to slaughter a bull on] and chat. I spoon mouthfuls of pie into the one that can't / won't hold a spoon, encourage spoon holding in the one that can hold a spoon but won't, and squirt cream on the other two slices for the mainstream participants.[translation = senior daughter has abandoned us. {translation = visits a real American family in Maine]

“What can we get you?” enquires my host.
“Oh I'm fine, I'm still full of turkey thanks.”
“You have to have something?”
“You're right. I need to have something to absorb the wine. I don't suppose you have any left over sprouts?”
“Sprouts?” asks my hostess. Her eye brows rise so that I am better able to observe her blink.
“Yes, any Brussels left over from lunch?” [translation = food eaten at 4 in the afternoon?]
“You want Brussel sprouts?”
“Just a thought! Or have you already composted them?”
“You want left over Brussel sprouts?”
“Yes. You don't have to warm them up or anything, they'll be just fine cold.”
“You'd be wanting salt with that wouldn't you?” Do I detect a hint of sarcasm? How grossly unfair, Americans aren’t supposed to be able to do that, genetic I think.
“Only if it's not too much trouble?”
“Cold brussel sprouts and a salt cellar, huh!”
“Just a thought.”
My hostess leans across the table to establish eye contact “the day a Brussel sprout enters this house, is the day I jump in the compost heap, if we had one!” The engineer, student, professional, lawyer and spouse lean back in their chairs and stare at me with their arms folder. [translation = consensus of opinion {sub translation = none of them are doctors}]
Is it too late to assert that I adopted them? [translation = gene pool]
“I don't suppose there's any point in asking if you have any mint sauce? No? No matter [translation = worries] I'll bring my own supply next year. There will be a next year won't there?”

They're always welcome here. You can drive em.” [translation = chauffeur with picnic]


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Translation and interpretation of available Data

[translation = guessing {sub translation = an uneducated guess to boot}]

I fight with the Brussel sprouts as my younger autistic son drapes himself on me.
“But why?” No speech delay today then!
“Why what dear?” I am not ready for any further discussions about vegetables.
“Why naked?” Please, just let me get these finished!
“They're not naked dear, I'm just taking the outer leaves off so that they'll be all perky underneath.”
“What perk?” Help!
“Um, fresher, greener, more appetizing.” He sidles around and melts over the kitchen counter, rests his head on his forearm and honours me with a glimpse of his huge eyes.

“What you talk? What you say? What are you talking about?” I don't know, now that you mention it? Perhaps I'm on the wrong tack entirely.
“What are you talking about? Are you asking me about the Brussel sprouts?”
“No I ask about da naked?”
“Who or what is naked dear?”
“Daddy.”
“No he's not, he's just got dressed.”
“I know dat! But before. When he is in da bed he is naked.” Ah. I glance around for support. [translation = physical presence of additional parent {sub translation = the culprit}]

“Oh here he is! Look Daddy's here now, why don't you ask him yourself about being naked in bed?” Spouse stops dead in the kitchen and blinks. [translation = several times, whilst his word retrieval system kicks in.]
He exhales and rubs the stubble on his chin to aid word production.
“Well, I don't like pyjamas, never have, never will.”
“Why you don like em?”
“I don't know really, you just get all tied up and tangled in them.”
“Me too! Why I have to be wearing da pyjamas den if you are not wearing da pyjamas also?” [translation = get out of that one matey? {sub translation = check mate}]
“Um?…..well when you are a man then you can decide for yourself.” Good counter!
“What if I grown up to be da woman?”
“You won't.”
“No, no, no. I am meaning……er…….Mummy is not wearing da pyjamas either?” [translation = sunk]
“Women don't wear pyjamas they wear, er……they wear nighties don't they? What do women wear in bed love?”
“Don't ask me, I want nothing to do with this conversation. But don't indoctrinate the child with such sexist propaganda!” [translation = why don't you both just run along and play somewhere else?]

“Y'know. I am finking dat dis is…..er……well…….jus a minit………is it dat da English people are naked in bed and not da American people?” Horray! A let out clause.
“Yes, you're absolutely right! English people are naked in bed at night, not American people, they were pyjamas and nighties at night.” Now there's a stroke of luck! Spouse and I grin at each other, another triumph of logic.
“You know?” he says, “you need to remind me about that tactile whatever it is, or is that sensory whatever it was?”
“You think that’s what it might be?” Our son disrobes in the kitchen between us. Spouse is first, “what are you doing? Don't take your clothes off!”
“But I am an American and it is day time.” [translation = a double dose from the gene pool]

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