Laws of Physics Kirby

Hosted by “Tracy” at “Mother May I,” but the photo-picture below will whizz you right there with one click.

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Today I have to spotlight my daughter, a tiny icon. You may remember that we had a “breakthrough” around here when my son decided that he both could and would draw, freely. It was pretty momentus for us.


His birthday was just around the corner and we take presents pretty seriously. We both favour the hand made kind of gift, the ones that take very little money but do require a great deal of thinking time and effort.

So this is a magical feat of artistry to me. He drew the pictures and his big sister transferred the images to the computer, coloured them in and then transferred them onto a t-shirt.

The gift was a hit. He was both mystified and delighted. that was the real gift, the gift to the giver. It may seem a little odd but it is all too familiar territory. We adults agonise over what to give, the right match, something that will give pleasure but 99% of the time, we fail.

It has been a long and tortuous path.

Initially if was basic. Either one of them would be absorbed in one of their favourite activities when a present intruded upon the scene. The present, whatever it was, would hold no interest, merely an unwelcome interruption. When whatever it was, when unwrapped, would still be of no interest, even if it fell into the category of their interests. The terms novelty and new, which are commonly attractive, were not so here.

In the beginning there were no words available which meant that we parents were quite at a loss to know what exactly had gone wrong. Over stimulated, over excited, wrong present? We guessed. We had no idea.

Later there were words, in-between the meltdowns, but they didn’t help much either. We learned that big present opening sessions were guaranteed to disappoint everyone. Far better to work on one gift at a time, over a long period of time. Opening presents became a finely orchestrated production. The key to peace was the ability to peek inside their skulls to see what it was that they saw and expected to receive. We lacked that ability. The disappointments and hurt feelings of all parties sapped energy. All we could do was to work upon their expectations, to accept less than perfect, lessen their investment in the unknowable outcome and sow many seeds in advance.

It’s not just the big occasions like birthdays, but the little casual occasions.

Americans are a generous race. There appears to be no occasion to small to exclude a gift for children; the dinner party, the visit, the play-date, they all include a little gem of ‘I picked this up, I thought you’d like it,’ words guaranteed to induce doom. Many a parent will pick up some candy on the way home from a trip or an errand. Something catches the eye. A reward for good behaviour whilst with a baby sitter, or merely the other parent. Guilt for time off, bribery or a swell of joy to share. It doesn’t matter what the motivation is, nor what the gift might be, they all result in misery.

People have a hard time understanding.

Children and presents seem a perfect match. A kid in a candy store or a toy shop. But not these children. If these children go to a toy store, assuming you can get them into the store in the first place, they may find one thing that they find attractive. It is probably something that they already have, something from their very narrow category of current interest[s]. It is far more common to find that there is no ‘one thing’ that they find attractive, unless you count the price stickers and the electric door.

No so long back, my eldest daughter had been away in Mozambique for a long time. On her return she brought gifts, tiny, local delightful, well chosen gifts, but it was crowded. She was out of practice but well intentioned. She took him aside for a special one on one session. She was so sure she had a match. She could cope, it would be fine, he would love it, they would connect after her absence. Joint attention, no pressure, in the zone. How could he resist? Every child would be at least intrigued. I watched her billowing confidence. Maybe this time? Don’t use the word present! Why not later when there are less people, less noise, less busyness. She was a cheerleader of presentation with simple language at his height, un-intimidating. He screamed as he hurled it across the room and lunged to the floor. The room went silent as everyone turned to take in the scene, the long lost sister and the spoilt little brother. Murmours of ‘jet lag’ whispered through the room as tears of abject disappointment spurted from both of them.

I could write on this one topic for hours, each little step, each moderated accommodation to bring the boys to where they are now, but I’ll leave it for now. I prefer to bask in the pleasure of witnessing my daughter’s first ever success, after a decade of trying she hit the right note, a harmonic tone that resonates between all of us.

So if you ever receive an invitation that includes the phrase ‘please, no gifts,’ try and be cruel to be kind.

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Superheroes

5 Minutes for Special Needs

Guess what we watched this weekend?

If you enjoy caption competitions and photographs, you may wish to nip along to“DJ Kirkby” over at “Chez Aspie” and test your brain power.

Meanwhile I’m still struggling with international postage rates as $45 to the UK is daylight robbery as far as I’m concerned. I may have to limit myself to the good ole US of A initially and expose myself as the tendentious, ethnocentric nincompoop that I really am!


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Autocue – spoonfeeding

Sometimes it seems as if we have been going to occupational therapy forever, certainly more than five years. Together, the boys had 13 hours of different therapies a week up until the time that I had jaw surgery.

At that time we dropped everything except for the two double therapy sessions on a Wednesday afternoon, double occupational therapy and double speech therapy because Wednesdays are a half day at school. Their “father” took them during my period of recouperation. It gave him a far deeper “understanding” and greater “involvement” such that when I had recovered and was ready to take up the reins again, he decided that he’d prefer to keep taking them himself.

These days I take them occasionally when his schedule doesn’t allow him to go, like when he is abroad on business. Hence when Wednesday looms, I am secretly dying to see how their session will pan out with their father away. I’m uncertain what kind of routine they have developed, independent of my input.

In the past it was a great struggle because it was a transition and because therapy was hard work for them. On arrival, they used to enter the waiting room and then I would prompt them to tell their therapists that they’d arrived using the intercom. This meant pressing the button and speaking clearly into the audio box simultaneously. They used to have to use the step to reach the box on the wall, but they are considerably taller now. Each step took a great deal of prompting. On completion I would prompt them to remove their shoes and socks and stack them on the shelf. This also took a great deal of prompting, times two.

These days, they have had many years of practice, many years of prompting. I am keen to see how they will fare.

On arrival at the waiting room, one runs to the window to take a peek into the studio and the other flops onto the sofa. I wait. I observe. There is no further movement from either of them, nor any words. I wait. I observe. I sit on my hands and then put my elbows on my knees with my hands over my mouth. I wait. I observe. It soon occurs to me that I will wait for ever and that there is nothing to see. No action is likely to be forthcoming. I feel suddenly quite saddened for no apparent reason. There are lots of reasons that could cause sadness, but none of them are present, but still, the inertia drags me down. Just like other children they dawdle and are easily distracted. Just like some other children we have the ever present hurdles of inertia, ideation, sequencing and a serious lack of executive function regardless of the label.

I feel a tiny tickle at the back of my brain, deep in the depths from my years of speed reading to track down useful clues and tips. I became a butterfly reader immediately following their diagnoses, hopping from topic to topic, the brief overview and the summaries, gleaning the finer points but missing the big picture in crisis management. There are many tomes just on this one topic:- introduce the new behaviour, positively reinforce the new behaviour and then ever so gradually fade the supportive reward system. It is the fading of both the reward and the prompt that engenders independence. Without that final step they become reliant upon the prompt.

There again, there’s always the possibility that it’s nothing to do with autism, merely tired kids.


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Wanton acts of violence

Slurping Life
Get the code:-
Cut and paste
from this little
boxy thing below

This is what I found first thing yesterday morning at 5:10 a.m.

I really wanted to be angry as they were new for Christmas and it’s a bit nippy around here in the mornings.

I was secretly pleased as it’s a rare thing for anyone to voluntarily pick up a pair of scissors and use them as a tool purposefully.

I decided I would attempt a minor correction to this behaviour so that it doesn’t become a trend.

When I approached him he was so excited and chatterful that it was hard to get a word in edgeways, let alone an admonition.

Eventually after a great deal of gamboling he was able to show me how he had copied the illustration from his game:- Pokemon Ranger Kellen.

They could almost be twins! I did wonder why he was voluntarily dressed so early in the morning. I did wonder about the shorts in the middle of winter, to say nothing of the sleeveless shirt.

I’ll stop now as I think my bias is showing.


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Finger Puppets – Try tackling this tuesday

Try This Tuesday

With the festive season over, you may find like me, that your home has been transformed into Santa’s Grotto, toys strewn over every available surface. If that is the case, then it might see a little odd to create yet more mayhem, but occasionally it is sometimes best to admit defeat and go with the flow.

You will need:-
Felt squares
Glue
Sharpie Permanent pens
A picture from your offspring
The temporary loan of your offspring’s finger

Examine the creature that your child has drawn to determine which, if any, are the most important features.

Match the colours as best you may.

Draw around your child’s finger tip splayed on a firm surface to ensure a good fit.

Allow space for 3-D and seam.

Once completed and the glue has dried your child now has a custom made introduction to the Thumb Wrestling Federation.

I kid you not.

This project was for one of my sons, that one who does not suffer from tactile defensiveness. Generally speaking, crafts of any kind do not interest either of them. In this particular instance, he was motivated by the “Thumb Wrestling Federation.” He came up with this idea all by himself. He was so motivated that after a few initial outburst of frustration he understood that his describing words were not up to the task, hence, oh wonder of wonders, he was persuaded to draw and colour the image rattling around in his head. This project required several gallons of patience because I knew that his drawing wasn’t an exact match to what he envisioned. Perfection is king around here and hence he was able to verbally correct my errors, bigger, smaller, longer and so on.

All in all, he was satisfied with the results.

On completion he was ready, willing and able to commence “thumb wrestling.” Whilst this might seem a little aggressive, for people with poor hand strength, weak finger isolation and poor motor control, I suspect we need not be overly worried. More importantly, this is a perfectly pleasant way of personal and intimate interaction. Who would have thought that he’d come up with his own social skills exercise. Yippee!


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Now that’s not normal but what is these days?

We all begin to adjust to our “new arrival” in our own individual ways. In the aftermath of the festive season there is a more than usual amount of messiness around. I warn everyone that things left about are likely to be chewed, or if they’re very unlucky, eaten. As usual, no-one pays any heed. I list a lengthy record of similar occurrences that they have each directly experienced with other people’s dogs in the recent and not so recent past. My list and the repeats of my list, sound like my own silent solo. A scratched record.

I prepare mentally for the first casualty. Which child victim? Which precious toy? I don’t need to wait long.

I gallop at the first scream of agony.

In the family room I find my son knelt on the floor before the dog with his hands under his muzzle, “dwop it “Fatcher!”
“Use a firm voice dear,” I encourage.
Dwop it Fatcher!
“Maybe he doesn’t recognise his name? You could try the ‘th‘ sound?”
“Dwop it f f th thatcher!”

Thatcher reluctantly drops the package of sharp plastic corners, part of a prized Christmas present. He slips the packet into the back of his pyjama bottoms, out of sight, so that both hands are free to pet and praise the dog for his amazing feat of obedience. Perfectly sequenced steps. Seamless ideation. We chorus good dog. My son chortles deliciously as Thatcher licks his ears and neck. He expresses no concern or anger at the ruined toy.

Lesson learned.

“He dun bin choke on dat bad fing!”

His sole concern is the welfare of the dog.

Several lessons learned.

Below is a picture of yet more advanced social skills. My son and Thatcher curl up for a cat nap, which may not be of any great significance. Only the real baby sleeps. However, if I also consider the fact that this is 15 minutes into the sacred ‘electronics’ time, half way through his precious half an hour, then this would seem infinitely preferable and maybe a teeny tiny bit admirable, but there, I’m letting my bias show.

As his little brother said:-

“Finally! Someone who likes fire hydrants as much as me.”

It’s probably a Garfield quote.

Don’t forget to nip along and say ‘hi de ho’ to “Michelle’s” family over at “Full Soul Ahead,” and see if you might be able to “help out” with her post called “A Service Dog For Riley.”


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The Basic principles of parenting

You only need to know one. The one principle that all parents need to know and apply is 'consistency.' It's better for the parent, it's perfect for the child. If the child happens to be autistic, then woe betide the parent that quibbles with the undoubted soundness of this GOLDEN rule. The parent of the autistic child must apply the same consistent rules to that child several thousands of times, preferably in the same manner to avoid confusion. [most probably of the parent] Should you, the parent, be tempted to deviate from this course, then you only have yourself to blame when the whole house of cards comes crashing down upon your head. I know more than a few parents have difficulty with this first and most basic of steps, but it behoves us all to heed these words well. There can be no back sliding, no namby pamby, weak willed spineless parenting styles.

I return home with renewed fortitude to conquer rather than tread water. I have envelops to push, campaigns to promote and the determination to follow through even if it kills me. Oh yes, there is nothing like a 7 minute emergency trip for milk at 7/11 [translation = almost the corner shop] to recharge a parent's batteries.

I step inside just in time to catch the youngest speech delayed one as he scampers out of the bathroom, naked. Yes, naked again due in part to “tactile defensiveness,” which in turn, is part of the “sensory integration” issue, because few things are simple or straight forward any more. This is a task, that we seem to have been working on forever. Apart from the speech delay, and the use of language, for current purposes it is a three part ‘problem’: “sequencing,” [going through the same steps in the right order] “ideation,” [being able to visualise the end result] and of course, my friend and yours, “task completion,” [getting to the end.]

I hold him gently by the forearms, turn his body towards mine, find my cheerleader voice, pause, to ensure that I have his attention and say the same words that I have already said too many times to mention today, “clothes on dear!” He sighs as his body slumps, chin to chest, so that he is better able to gird his bare loins and growl. Suddenly his body snaps to attention, the soles of his feet stomp on the floor as he says, with rigid arms and spiked fingers, “ya know, you need to use dah different words! Dowz words are soooooo boring.” His chest pops out towards my chin, just enough to tip me over backwards onto my bottom. In this position I am better able to watch him depart, squealing, “run, run, run as fast as you can, you can't catch me I'm the Gingerbread man!”

It’s a shame that we can’t use the American equivalent, but of course it doesn’t rhyme. Nevermind either version is probably a good quote for a neophobic.


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Sparks and spikes

First thing most mornings, senior son has his full repetoire of words and more importantly, he is willing to demonstrate their use. This child's speech delay has transformed him from non-verbal for semi verbal, although an expert has yet to confirm this. He can struggle to retrieve the word 'green,' [translation = expressive language, what he can actually say] and yet in the alternative, use the preferred world of 'chartreuse.' [translation = receptive language, the words that he understands as they come in.]

This is in part why it is so difficult to accurately assess language use. I would liken it to being unable to remember the name of a film, an actor, that woman who used to live at the house at the end of the road; it's on the tip of your tongue but you just can't hook it. The frustration this causes, often means that it preferable not to speak at all but it is debatable whether a meltdown in the alternative is better? I need him to practice using words. The meltdowns are a by-product of his effort.


Although breakfast and the morning routine is fraught with stumbling blocks for the unwary, his ability to talk coherently often leaves me breathless with amazement and unadulterated joy. In a home full of rigid narrow rules I gasp at his expertise. Breakfast cereal follows fruit consumption. The fruit is compulsory as this is when they are at their most hungry. The reward, is a choice of about half a dozen types of cereal, some more preferred than others. The choice is limited by cupboard space. Until one box of cereal is empty, when there is room for a replacement, they are denied additional choices.

He skips to the cupboard and clambers up on the counter for a better view as I start my verbal protest. He waves a hand in my general direction saying sotto voce, “now just calm down now, it's gonna be o.k.” He says it to [me], not to himself as he usually does. The cupboard is stuffed to overflowing, “now let me see,” he pauses, his eyes flicking between the cupboard and my face as he calculated. He jumps down with alacrity and heads off to the garage and additional cereal packets, but now before calling over his shoulder to advise me, “I be right back, you just wait there nicely.” Not only at the phrases appropriate and delivered in a fluid flow, but he turned his head towards me whilst running in the opposite direction. Although this increases his chances of an accident, the very act of turning his head to send his message is striking.

When he reappears with a new packet, leaps onto the counter and jams the box between the others, he announces in triumph, “you see! It fits! I was right, you were wrong, but that's o.k. I forgive you.”

He tumbles back onto the floor. He visually checks that I am in the correct position before he turns his body forward again, so that he can gently reverse into my body, so that we curve together like spoons. His hands reach back to hold my thighs before he does a little jig, a backwards cuddle. To you it is disconcerting with sexual undercurrents. To me it is the demonstrative child exhausted by his speech efforts, yet wanting to communicate affection.


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Fictional Police report filed Friday, January 12, 2007

Nobody eats fruit around here!

The Sheriff arrived at 5:15 p.m. minus horse but with very shiny, pointy star badge. Please not that any errors in transcription are due to the indeterminate country of origin of the police personnel.

Quote – I was called to the property in question, responding to an anonymous tipster regarding a noisy disturbance. On entering the premises, I noted three semi clad children leaping about the place in an uncontrollable manner. An adult female identified herself to me as their parent. Fortunately the old crow was not scantily clad, however her wild behaviour indicated that she was in fact the ring leader. Although virtually incoherent, I did manage to piece together a few irrelevant details, as to the cause of the disturbance.

Note evidence 1 – item = the peel of an orange
The parent appears to be irrationally fixated upon the different sub species of orange, insisting that the peel in question, was not that of an orange but indeed, that of a Satsuma. I had to endure a long treatise as the options available, which included, but was not limited to: Clementine's, tangerines and Minolas……….. Their significance or the importance of their distinctive characteristics was lost on me. I took this as an indication that the inhabitants are vegetarians, devoid of the karma afforded to us meat eaters.

It may well be that the parent’s real complaint was of a ‘littering’ nature, although I am given to understand, by the said parent, that citrus peel is ‘bio-degradable.’ I advised the parent that I was familiar the term ‘bio-degradable’ but failed to see it’s relevant in a domestic, interior context?

The parent declared that her eldest son had eaten a Satsuma of his own volition. I tried to determine whether the said food item had been tampered with, adulterated or interfered with in some other manner, such as to provoke fear and consternation throughout the family. Parent denied credibility of my ascertions.

Upon further questioning it became clear to me, that the family was not in fear of an incident of poisoning, as I had at first assumed. I soon determined that 'fear' was not the paramount emotion coursing through the family members, but rather 'elation.' I am still at a loss as to why it should be that a celebration had embraced the family following consumption of an orange by one member.

The member in question addressed me as follows “are you dah cop guy?” I confirmed that his powers of observation were correct.
“You see I dah one who does not eat dah fruit. I don eat the vegetables evver.” Whilst I fail to register the significance of such a statement, the child was obviously happy and I saw no need to detain them any longer. I gave a brief consideration as to whether to file a 'wasting police time' report, but though better of it.


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In, Out, Shake it all about

Autism or no autism, some things are beyond the pale. Bear in mind, that for me, musical appreciation would guide me to be more of a ballroom dancer type. A dignified glide, so as not to dislodge the tiara nor muss the corsage. I believe that young people today, do not favour [translation = favor] such pastimes, preferring more aerobic forms of dance. [translation = I am allergic to anything that might make me glow {sub translation = perspire}] But I digress.

Back to the 'shake it all about.' Hold that thought. No! Not that one, delete that naughty thought and go back to the children's perspective. [translation = the innocents] That's right, the Hokey Cokey thought. [translation = Hokey Pokey] Now we're on the same page! Think of this, as a 'not so scholarly critique' or explanation, of this children's dance, possibly from the viewpoint of one, or maybe two, autistic children. Acknowledge or deny as many as you deem appropriate.
For current purposes [translation = controlled clinical environment] we will ignore issues such as the volume of the music, be that self generated, by singing [translation = unlikely] or utilizing some form of modern technology e.g. hifi, stereo, radio, tapes, CD's, records[?] etc. [translation = that's about as modern as we get around here.]

We'll also ignore the following; company. [translation = who is with us] Where we are? [translation = home or somewhere public and scary = synonymous] Variables such as simply having a bad day, any current phobias or obsessions. [e.g. the need to have arms clamped tightly to the body and that legs be pinned together at all times. A bit like a soldier standing to attention but in this instance, for the purpose of self protection.] We want to keep this as simple as possible. With me so far?

So, we have the familiar annoying tune, [translation = temporarily mislaid inner child] with words, simple words. [translation = lets not get bogged down in the speech delays] Although the matter of prepositions can be a nightmare, we will dismiss those too. [translation = in, out, up, down, between and we'll ignore the issue of 'shaking' whilst we're about it] Whilst they know all of these words, then are not considered important enough to use appropriately. On the whole they are surplus to requirements, afterall most of them are pretty small words. Generally speaking they prefer bigger words, multiple syllable words such as 'voracious' or 'commercial.' They may not be able to pronounce them correctly, but they still prefer them. However, such terms are not much use, if you're trying to dance and sing at the same time. [translation = unless you know otherwise?]

Right, so now we've cleared the pathway of clutter, we can begin.
I lied. There are a couple more issues that we need dismiss. [translation = eliminate for the purposes of this discussion] Independence. An autistic child is often independent. By this, I mean that they are on their own programme with their own agenda, as many children are. However, in two particular cases, the cases of my particular sons, [maybe others] when they are doing whatever it is that they are doing, they object strongly to being asked to do something else. This phenomenon is known as a 'transitioning problem.' [Sorry! Challenge] It is an issue for many children, but autistic children are far more tenacious.

This is linked with a secondary [translation = probably far more important] issue of motivation. [translation = I left the best for last] It goes something like this:
Hunker down, gain eye contact, arrange facial features into animated expression, moderate tone of voice to sound excited, use hand gestures assuming that you are not guiding the child's body to orientate them towards you.
“Come on you lot! We are going to play the Hokey Cokey?” Always a statement, never an invitation, as the answer will always be 'no.' [translation = guaranteed.]
“It's not the Hokey Cokey Mom, it's the Hokey Pokey! They're never gonna play if you use the wrong name!” Valid criticism, as always. I put an arm around the shoulder of each boy in the hope of conducting a positive energy force into their little bodies.

“Nah, dat is boring.” Simultaneous hurdles; stop what you are doing [translation = transition] do something more fun [translation = motivation]
“Come on, it will be fun!”
“Nay, dat is not fun.” Child may be reflecting upon the challenge of co-ordinating body parts, following instructions, balance, and such like, all of which have negative connotations because of the perceived difficulty. [translation = which is a reality too] So, just assuming that you have battled your way to this point, you probably have insufficient energy reserves to sing and dance too. [translation = flat battery]

{Sub translation = who needs a tiara anyway?}

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