Addict in part time supervisory capacity

I pop more pills because my body ceased to be a temple with the surgeon's first incision. All the staff express concern for my well being and tell tales of other patients suffering drastic weight loss. I try and pay attention to the dentist's instructions, but I have childrens' timetables to attend to in my mind. I hear the world 'unstable' drift onto my radar screen. Unstable? How does he know that? I tune back in. Oh good, it's only my jaw that is unstable but the sack full of elastic bands should hold everything in place. I have thoughts of it falling off, that I might lose it in my hurry to be off. He scribbles notes on my chart and I'm off before the ink has dried.

I drive home deep in thought of weight maintenance, debating whether it would be possible to drink a bottle of olive oil like the chappy in the
At home, all is well. I speak to my children, loudly, kneeling. They all look at me.
“It's off! Cool!” She gives me a hug and kisses my forehead. The boys step closer, cautious.
“Let me see?” he asks, screwing up his face in anticipation, squeamish but braced for bravery. “Oh yes, it gone!”
Junior shuffles forward, covers his own mouth for protection and commands “open it up!” I oblige. “Why you have dah string dere now?”


“It's not string, it's elastic dear.” He ponders, a finger to his mouth in the classic 'thinking' pose. “Dat's good. Den it won fall off.”
‘Great’ minds think alike.


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Leaking

I sit at the dining room table with my children as they eat their snacks. My prompts are limited as my words are indistinct after jaw surgery. I try to glug my next bottle of Ensure, the most vile liquid substance on the planet. The crunch of munching crackers makes me slightly jealous, the salt crystals glitter in the weak Californian sunshine. Only five more bottles to go before bedtime. Three pairs of eyes long to share the sickly sweet drink.

“Eeow Mom, yur dribblin!” she squeals. Junior scrambles from the table and rushes into the kitchen. He slams a few kitchen drawers before returning with a floor cloth. He hesitates, falters, recovers and dabs ineffectually at my chin, “dehr you go mom, all better now!”

Rats to the theory of mind.


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School report

Communication with the school about daily events is a pivotal point of contact between both parties on the front line. Junior’s school report is not a happy one. It is a recurring theme, spitting at school. Bad habit or perseverating? He spits at home too but we are here to deal with these incidents. When he is at school we are virtually powerless. It is sad to note, that of all the many skills that we would love him to generalize, [translation = be able to repeat in different geographical locations and times] spitting isn’t one of them. We have used a variety of tactics to curb this habit, thus far they have all failed.

There is a veritable panoply of tools available to the parent of the autistic child and whatever current crisis that you are currently experiencing.

We started with the most obvious first step, namely the basic threat – ‘stop spitting or we’ll whip your gizzard out.’ [note to self – research location and function of ‘gizzard’] We moved swiftly onto step two –’it’s duct tape for you matey!’ [translation = an option limited to fellow Americans] We then trolled through our usual options, the social stories, [translation = “Carol Gray’s site”] the sticker motivational option, the negative count. [translation = count the number of times that you didn’t do it, when you wanted to do it, and compare with the number of times that you couldn’t resist, then gradually tip the balance in favour of the later] This method is useful for the child that loves to count. I suspect that they enjoy it purely for the counting exercise, but that is immaterial if it brings positive results. Then the logical ‘germ’ talk, which often works well with the OCD kind of a kid, but to be used with cautious due to backlash of temporarily tamped down neurosis. The superclean child who is learning to be less so, is likely to react negatively to such a suggestion. This may result in all the reduced OCD habits re-emerging like a plague. It is a brave parent indeed, who will risk fiddling around with the status quo of the OCD.


We occasionally try out more conventional measures such as the ‘big boy’ appeal or ‘make me proud’ guilt trip, just in case something might have changed and we failed to notice the development. On the whole the last two are a waste of breath since no-one has any desire to grow older, nor be regarded as older, and ‘maturity’ is not rated as a strength. This is to say nothing at all about the unlikely or remote desire, to engender pride in anyone or anything. It always amazes me that these two most powerful tools in the average parents’ arsenal of tools, are actually the most worthless ones for the parent of an autistic child. But we haven’t forgotten their existence and we throw them into the mix every so often just to check the status quo. I fear, that should someone ever unexpectedly respond to either of these two appeals in the future, that I might suffer an attack of the vapours if not properly mentally prepared in advance.

In summary, the ‘spitting’ issue is a recurring one that we have yet to deal with successfully by any of the above means, as well as a whole host of others that I haven’t mentioned, due to time and space constraints, as well as the boredom factor. In the meantime, I think.

I prepare myself mentally and take him to one side so that we may both ‘clean our teeth.’ It’s a slow business for me, as access to my mouth is minimal after jaw surgery. I use a lot of face cloths to clean myself up before we retire to my bed, where my wipe board waits. I write, he reads.
“I SAW YOUR SCHOOL REPORT.”
“I had a bad day today.”
“I WISH I COULD SPIT LIKE YOU.”
“You cant spit.”

“NO.”
“Why you cant spit?”
“AFTER THE SURGERY MY MOUTH DOESN’T WORK PROPERLY.”
I pull an exaggerated sad face. His finger tips brush my lips.
“I can see? Open dah mowf please?”
I oblige revealing braces, lumps of plastic and enough elastic bands to play cats cradle to professional Olympic standards.
“I HAVE A DEAL!”
“What deal?”
“HOWABOUT YOU CAN SPIT AGAIN WHEN MY MOUTH IS BETTER AND I CAN SPIT AGAIN TOO? CAN YOU WAIT UNTIL WE CAN SPIT TOGETHER?”
“You want to spit with me?”
“SURE I’D LOVE TO SPIT WITH YOU.”
“You are the sad one?”
“I AM A LITTLE BIT SAD BECAUSE MY MOUTH IS ALL WONKY.”
“I fink maybe I can wait a bit. You are better tomorrow?”
‘I GET BETTER EVERY DAY BUT IT MIGHT BE A LONG TIME UNTIL I CAN SPIT LIKE YOU DO.”
“How long is dah long time?”
“I DON’T KNOW. TELL YOU WHAT, WHEN MY MOUTH IS BETTER WE CAN SUCK UP CHOCOLATE PUDDING WITH STRAWS TOGETHER AND THEN BLOW IT OUT.” [translation = an exercise recommended to help with lip closure and breath control!]
“You cant blow evver.”
“I KNOW. CAN YOU WAIT UNTIL WE CAN DO IT TOGETHER.”
“May be……….but I will not be blowing dah chocolate pudding out because I am liking to be eating it. You can blow it out though, coz I know that you are hating dah chocolate pudding.”

The ‘Theory of mind’ dies again. Horray!


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Request in a letter, needs expert translator

At various opportune intervals during the day, I nab him to park him at the table. Once in position, I mention that it might be a good idea to add to his list for Father Christmas. [translation = Santa Claus]. He sighs with a mixture of weary patience and defeat, “O.k. what we are putting now!” he queries with exasperation. Autism's rigidity seems impenetrable. [Ref 1]
I detail the five items that I have managed to extract from him thus far: [translation = auto suggestion] chocolate, Belgium only, a book, non-specific, a game, general but probably of the 'board' variety, something to cuddle and 'a present.' It is a woefully short list for any 6 year old to have produced. Generally children of this age either have a list several yards in length, or a shorter version with very specific items, make serial number and price, just so that there can be no mix ups.
“Can't you think of anything else you'd like him to bring you for being such a good boy all year?” I weedle.


“Ah mummy, I is not a good boy anyways and I don want nuffink any roads up.” I seek out the blue eyes to see if I have timed this badly? I point to my beautifully configured numbers in the hope of encouraging him to add another. I don't want to induce cardiac arrest in Santa when he finds a list with only five items on it.
“Can't you think of anything that would make you feel very happy, that would make you feel a happy green?”
“Well, maybe I am wanting something.”
“Really? What?”
“I am having to want three eggs actually.”
“Great! Number 6, three eggs, that's a great one! Can you think of another one?”
“Er, well, maybe I fink I am wanting a great gold star.” Saints preserve us, we're on a roll! “Wonderful! That would make a superb gift. Anything else?” Is there a chance we might reach double digits?
“Hmm, let me see now, I think my last fing would be some green toofpaste so that my teef can be happy too.” Why didn't I anticipate this? Does anyone manufacture green toothpaste? Do I have enough time to go to Walgreens? Will they let me open half a dozen tubes so that I can squeeze out a squirt and check colours? “Superb, happy teeth must be the best thing in the world, anything else?”
“ Umm, may be I need some bendy pens, I mean soft pens that won't be hurting my hands and fingers.”
I know that his ‘list’ looks strange to a casual observer. I could explain each items significance but that’s not really the point. The point is that he has no compunction to explain what these things are. The theory of mind, or lack thereof, tells us that he assumes that I understand, that I think as he does, therefore there is no need for him to expound. Even if I were a complete stranger he would still not explain, even if prompted, there would be no point. His perspective is that everyone knows their significance. It is easy to see why this tendency is seen as pivotal, in an autism diagnoses if not merely narcissistic.

“Fantabulous, those are the best pens on the planet! I hope he has some?” I wonder where they can be bought? “Any other offers? Anything else? You're up to 8 now!”
“My last thing will be a sharing thingy.”
“What kind of a sharing thingy?”
“A game that my bruvver is liking very much, so that we can be taking turns together. I like the game cube game because is it yellow, er because is it nearly golden colour, which is my favourite colour, but he is liking it because it is a Pokemon game and it will be making him happy, it is called a “Topaz Pokemon Version.”

So much for the Theory of Mind.

Ref 1 = 
adamantine \ad-uh-MAN-teen\ adjective
1 : made of or having the quality of adamant 
*2 : rigidly firm : unyielding 
3 : resembling the diamond in hardness or luster


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Early onset

[translation = here sooner than anticipated {sub translation = senility, that is to say}]

Oooo enough of this 'hidden disease' malarkey. Far too tiresome, and certainly anything but hidden. It's all to obvious around here I'm afraid. There might be many reasonable and logical explanations for what you might observe in the confines of this, our home, but the most obvious cause is autism.

How do I mean? Well, lets start with a small example and we can compare notes. Sounds like a plan? Good.

Here are the basic ingredients. [translation = add or subtract as you deem fit. {sub translation = minus}] Take one child or the smallish variety, ideally male. [translation = lower incidence 'female.'] Sprinkle the following substances over the said child and observe reaction. [translation = for some subjects it is best to avoid the 'head and shoulders' area with there is a higher incidence of receptors]

Take and eye dropper. [translation = haven't the foggiest, please supply at your earliest convenience] Fill with blood temperature water. Drop one droplet on subject. [translation = insert earplugs prior to commencement]


Take talculm powder and drift one siftlet over the child at a height of approximately 5 feet above head. [translation = a step ladder may prove useful for this portion of the programme.]

Thirdly, expose child to the sound of the fire alarm sensor. [translation = the soft beeping noise that the contraption emits when the batteries are low] Ensure that the device is the greatest distance possible from the said child. Do not be alarmed that you are unable to really hear the same noise yourself, until you are standing 3 feet beneath the dratted machine.

Fourthly, take your favourite foodstuff. [translation = any one will do, just as long as it is universally agreed by mankind, that it is delicious] Ask subject to a] look at food. B] smell food. C] touch food [translation = not necessarily with finger, due to tactile defensiveness] D] lick food. E] taste or eat food. Let me know if you get past A].

Lastly, try and cuddle subject when he's not expecting it. [translation = bandages are in the bathroom]

Advanced programme. [translation = program {N.B. not for the faint hearted.}] Repeat as above, but this time use yourself as the subject. Observe the enhanced agony of your child, as you expose yourself to the same elements. [translation = cannot put oneself in another's shoes {sub translation – rats to the theory of mind}] [See Ref 1] If the observer of the subject reacts as follows:

“No, no, no. Doe not do dat! Agh! Agh! Agh! You will be hurted! No! No! No! I will hep you!” then you may gain some small reassurance that the theory [as set out below] is not always the case. [translation = in all situations] It is sad, as always, to observe the callous attitude of the mother. [translation = prima gravida]

Have I convinced you?

Oh! You think it's more 'sensory integration issues and a bit of speech delay' huh! Or maybe you adhere to the theory that he’s a wimpy little nerd who needs to ‘shape up?’ A valid observation as always on your part. Luckily we're all entitled to our biased opinion. [translation = especially me]

A child with too many nerve endings? [translation = maybe just a bad wiring job]

{sub translation = whoop de doo!
/jolly good show Mr. Eye Contact}

[Ref 1] The Theory of mind from Wikepedia [thank you] According to Simon Baron-Cohen et al,[7] [ translation = I love him and all his pals really] many autistic children appear to lack a “theory of mind,” which is the ability to see things from another person’s perspective. This is a behavior cited as being exclusive to human beings above the age of five and possibly, to a lesser degree, to other higher primates such as adult gorillas, chimpanzees and bonobos.[citation needed] Typical 5-year-olds can usually develop insights into other people’s knowledge, feelings, and intentions based on social cues (e.g., gestures and facial expressions). An autistic individual may lack these interpretation skills, leaving them unable to predict or understand other people’s actions or intentions. [translation = a load of old codswallop {Sub translation = rhubarb}]


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Contextual referencing

“What it is?”
“What is what dear?”
“Er,…it is saying 'nun a dee abuv?”
“Say it again?”
“Nun a dee abuv.”

They both have a tendency to do this, blurt out a question that is connected to something that happened yesterday, last week or last year. They don't reference their questions, that is to say, put them in contex, so it can be the devil's own job, trying to detect where, when or what the question stemmed from? [translation = very difficult]

Why don't I just ask for the context? You’re right I could, perhaps I should, but at this stage of their verbal development we want to encourage them to talk, reinforce their efforts in a positive manner. [translation = frightfully American] If you respond to each question with a barrage of additional questions, you'll just put them off, they'll stop trying and we'll go back to our world of silence. [translation = the old parenting style]

I stand in the middle of the kitchen with my x-ray eyes, willing inspiration to zap me. I lean on the kitchen counter to take a deep breath, so that he'll think it is a natural pause in our [potential] conversation. My finger tips touch the edge of the fifty page questionnaire. [translation = exaggeration, but still yards to long {sub translation = yards}]

I glance at the open pages:
‘no. 56. Does the child
a] always resist physical contact
b] never resist physical contact
c] not applicable
d] none of the above.’

Shouldn't have left it out! Should have tidied it away. How could I have forgotten that he can read anything if he is so disposed. [translation = hyperlexic] He lifts a delicate finger tip to his lip, tentative, cautious.

“ 'd' is not da good one?”
“'d' is a great one. I love 'd'. You are absolutely right!”

His medicine ball head clunks into my hip bone. How can you contain a 'spectrum' disorder in a questionnaire that doesn't wrap round the world 3 times?

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