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Showing posts with label phobia. Show all posts
Showing posts with label phobia. Show all posts

Saturday, July 07, 2007

Cultural Bias – message received and understood
















I grew up in a time and country that mocked Americans. Like many children, I didn’t question the status quo. I had my own views but didn’t voice them. I knew that adults were unable to appreciate the joys of a good Western and that American cartoons were infinitely superior, rather than ‘absolute rubbish.’ [translation = trash]

One of the clues that I gleaned about Americans was actually a mistake. It was my mistake. I disliked titles. I accepted Mr and Mrs. Salomon as a title but I wasn’t much taken with Lord and Lady MacIntyre. I wasn’t overly fussed with the ‘Lord’ bit, but ‘Lady’ stuck in my throat. [translation = craw] I felt similarly about Queen and Princess, as even at that age I was biased against stinky pinky.

I had learned that the colour blue, indicative of the male species, became associated with boys a long time ago. Blue, or the dye indigo, was expensive and rare. It was used to dye the robes that little boys wore. This meant that when there was a raid, the boys, the valuable creatures, could be scooped up and rescued speedily. The history books were silent as to the fate of the girls. Thus, when I became familiar with American terminology, I was delighted to accept the title ‘Sir.’ I liked the title ‘Sir’ for men but I liked the title ‘Siree’ for women even more. Yup, those American’s would yell it out too, ‘Yes, Siree!’ and it was so empowering. What can I say? As a little girl, the term spoke to me in an oh so personal way.


I carried that delusion around with me for many a long year. [translation = my own personal secret weapon] My confidence was boosted by the knowledge that somewhere in the world, women had the power to make things happen. [translation = kick arse] When the bubble finally burst, the ridicule was easy to brush off. What was not so easy to dismiss was the vague sense of disappointment. [translation = someone had stolen my magic wand]

A little thorn such as this, helps me when I come across mis-understandings in my own children, especially the speech delayed ones. Whilst I am the first to laugh at their mistakes, I try hard to thread my way back to the source, so that I can help them untangle it. The English language is such a tricky thing. It is full of pitfalls for the unwary. Today’s educational system is based on the system of phonics, how the words and letters sound. It your attention span is challenged and your auditory processing is dodgy this makes the task of understanding the spoken [or written] word so much more difficult. The issue is further fogged by the fact that for many autistic children, communicating by language would not be their natural first choice. For mine, gesture and mimicry would be their first choice. For many it is sign language, but their success can be compromised by poor fine and gross motor skills. But I digress.



We drive around in England on holiday on the wrong side of the road. For some strange reason, the road signs seem far more obvious than they are in America. Maybe it is because the car is smaller. Maybe it’s because the whole scale of things is smaller. We seem close to the road, closer to the edges of the road and somehow far more crowded. Maybe it is easier to pick up the road signs because they differ so greatly from their American versions. They are different colours with different icons, far more icons that I recall from America. More importantly, probably due to my own cultural bias, they are easier to understand. ‘X’ ing in America for railway crossing always causes me a double take in America, but the British equivalent does not.




We play ‘I Spy.’ I loved ‘I Spy’ as a child whenever I could bribe someone to play it with me. I thought that my children would also enjoy playing ‘I Spy.’ I was half wrong in this conclusion. The girls loved it, the boys loathed it. Approximately two years ago, playing ‘I Spy’ was a refined method of torture for the boys. When you think about it for more than a nano second, the reasons are obvious. Here are a couple of chaps who are generally overwhelmed by the busy messages that their bodies and brains receive. [translation = a jumble] Added to this, you the parent, are asking them to single out units of information when they are already buried.

Additionally, to add insult to injury, the child is then expected to not only process the incoming information, but also then verbalize their findings. The little one has a layer of hyper-vigilance. [translation = everything is out to attack and kill him.] the other lacks a gymbal [translation = stabilizer] which I suspect means that he is permanently at sea. [translation – sea sick]

As a result, ‘I Spy,’ is still, strictly speaking, a no go area. They permit us to play with their sister. [translation = increased tolerance] We explain the road system; brown signs for tourist attraction. We also translate ‘tourist.’ Green signs with their corresponding numbers are ‘A’ roads. [translation = big ones] Blue ones are motorways. [translation = bigger ones like freeways] White ones are ‘B’ roads. [translation = little ones] We do not attempt to translate ‘dual carriageway.’ [translation = psychological cul de sac]

Time passes amiably enough. [translation = with the prop of a time count down as to our estimated time of arrival, to assuage the ‘when will we get there?’ metronome] All of a sudden Junior writhes into a screaming vortex. He is out of his seat belt and scrabbling at the driver, grabbing and scrambling for control. We have no option but to pull over as he is wordless.


On the side of the road, the hedgerow presses against the window, close enough for us to examine the veins of the leaves, as Junior recovers his composure and his ability to breathe. I have my ‘stop hand’ up to each face that tries to intervene as we wait and minutes pass. All the adult passengers want an answer and explanation, but they are genuinely concerned for his welfare. Surely the child must be suffering from a fit or impaled himself on a deadly weapon to be creating such hysterical display? The rapid fire questions from all directions only serve to wind up the pressure again until he is once again overloaded, spluttering and a fire cracker of flailing nerve endings. To calm him down a second time, takes even longer.

When he is calm, he is also now exhausted. Few people appreciate the physical exertion of a level ten meltdown. Now the word bank is on closed. He turns in his chair and points back along the road, wordless. All heads in the car turn to follow. We examine the road hunting for clues. His sister, advocate and best pal, translates for us. “I know! It’s the sign! Back there away a bit. The sign that shows the car falling off the road! Thanks for saving us Leo, but we’re not really gonna fall off. You’re safe when Daddy’s driving.” He blinks at her for a few minutes, checks that all the bodies in the car with him are still alive and then promptly falls asleep.


I conclude from this one tiny incident, of many [to follow] that England is far too dangerous a place for us to live in. [translation = as if I needed any additional excuses] In essence, the old country suffers from far too much new.[translation = we are allergic to new]

Monday, May 28, 2007

The curse of sun kisses



I am blessed with freckles, so many that you can’t put a pin between them. Whilst I used to loathe them, I have gradually grown to accept the status quo. This occurred in part, due to gentle gentleman in France. He explained to me, that in Germany, people call freckles ‘sun kisses,’ which somehow sounded so much better.

Now that my skin is turning into rhino hide, my ancient wisdom is reflected in age spots instead. I don’t know the German for age spots but they don’t fuss me much either. The ones that really annoy me, are the badly placed marks. In this particular instance, it is not vanity, more the unexpected consequences of having a mark where a mark should not be.

The visual acuity of an autistic child [or adult] can often be quite extraordinary. This means that a cluster of random freckles that overlay one another, especially as the sun moves us into Summer, become the equivalent of constellation study. Groups of freckles can become shapes. [translation = or letters or numbers]

The boring collections of freckles sometimes pretend to be a nose leak or a blob of chocolate on the corner of your mouth. Sometimes, as Summer heats up and holidays are in full swing, they might be mistaken for dried blood, if you were so inclined to interpret it in that manner. Some autistic children deliberately choose to interpret collections of freckles as being dried blood, merely to drive the freckler to distraction.

Snot, blood and all other bodily fluids are a cause of great angst in the little one. [translation = OCD clean] Whilst we are working on this aspect of his autism, like so many other campaigns, it can be difficult to manage them all simultaneously. [translation = some take priority over others, such as the food campaign] Blood would definitely score most highly on the Richter scale. Thereafter would be a wide variety of foods. One can also throw in the variable of temperature such as cold ice-cream or warmer than strictly necessary oatmeal, as well as every variation on a theme. Snot would be a high ranker but it would be hard to place it accurately on the continuum.

By the Memorial Day weekend, I have spent sufficient hours playing in the garden, to ensure that my skin has been exposed to the suns rays long enough to make bursts of freckle compilations appear everywhere. [translation = well everywhere that the sun shone, in any case]

I hunker down to wipe chocolate pudding off his face. Whilst I wipe his face, he watches mine. His eyes scrutinize every wrinkle.

“Ah! You are blood. You are dead? You are ill? What you are? Ah! Ah! Ah! Don touch me or I be dead too, go away!” Verbal expressions are of course a joy. [translation = so much better that the screaming meltdown with no clue as to the cause] Few people could be expected to interpret a meltdown as being caused by melanin. Such worries and concerns can quickly spiral out of control, as demonstrated by my son’s premature exit from the room, a little vortex of over stimulated nerve endings. He takes himself to the furthest point in the house to maximize the distance between himself and the alleged dried blood.

I seek him out in the hope of translating the evidence in a more enlightened view. [translation = I know most of his hidey holes]

I know that he hears my footsteps approach from 500 yards away. [translation = supersonic hearing] If there were any doubt in my mind, that I might accidentally surprise him by my arrival, this worry is dismissed as I hear him crow. He crows like a rooster. He does this because the correct words to accurately describe his distress are unavailable to him. They are unavailable to him because he is experiencing distress.

It only takes about 10 minutes of breathing and massage to calm him down sufficiently for him to be able to attend to my words. The logic of my explanation is faultless. His index finger very bravely checks my veracity. Surprise! Indeed, I was telling the truth all the time, only coloured skin, no blood.

Big brother appears to peruse the scene. He stands with his legs astride his brother to assess the situation. He peers at my face as I explain the difficulty. He contemplates for a few moments. [translation = plays for time whilst he retrieves suitable words of comment] He offers his verbal support to bulk up my conclusions, “it’s o.k.! Listen up little buddy! It’s not dah blood, it’s dah snot!” Gotta love those scripts! Boys 2 : Mum nil. [again]

Saturday, March 31, 2007

The Little Red Hen – spatial awareness issues

There is frost on the rooftops but the temperatures are due to rise to the mid 70’s. The house creaks and groans, as wooden joists contract during the night and expand with the morning sunshine. House habits alter. The window that was a snug fit, [translation = stuck] now has a draught. The plugged gutter that overflowed like a waterfall, now has a nest. The door that scrapped, now rattles.

I am even more twitchy than usual. [translation = grumpy] It is rare for an old person, such as myself, to have new experiences. There is only so much daily paranoia that I can deal with. Now I have to endure the surprise of a tooth, occasionally touching a tooth. As enamel contacts enamel, I feel as if I have been struck by a cattle prod. How do people live like this? My nerves jangle with the anticipation of the next tweak, as the elastic bands on my braces twang. Suddenly the option of dentures seems infinitely more attractive. I never thought that any of my teeth would ever touch each other. Now that they are on the cusp of meeting, I wish to revoke the invitation.

I return to the task at hand. How exactly is one supposed to dress in such weather, or more importantly, how is a mother supposed to dress temperature sensitive children? Senior has decided that the solution to this particular problem is to wear his shorts in the middle of his legs. [translation = half mast] At his age and design, his arms and hands are just the right length to hold the waistband of his shorts, at the level of his groin. In this way, the top of the shorts meets the leg seam of his underwear and the bottom of the shorts nearly meet the top of his socks. Perfect!

He has yet to connect this choice with his inability to walk very far without falling over. I swear that if I hear, ‘clunk’ / “oopsie!” one more time this morning, I shall go completely batty. He will go around all day with his hands clasped to his crotch and his batman underpants exposed at the back!

Spouse rests a hand on my arm, “don’t worry, when the mercury rises, so will the shorts!” he beams. Clearly I have failed in the ‘neutral face’ department. My clenched teeth might be excused, but obviously the rest of my face has given me away. I blink because at 5:30 I read "Kevin's posting," on his site via "the autism hub," and the word ‘mercury’ blinds me temporarily.

Of course! It weather will warm up and he’ll pull his trousers up.

I am still guilt ridden from a bad decision at 5:45 a.m. Mother Nature hates me. Which to do? Give the obsessive compulsive perfectionist a sheet of pristine paper so that he can draw, or insist that he colour on the back of a used piece of paper, break down his resistance and get the regulation/modulation thing going?

I am also miffed about his school book, 'Love you forever.' He sat on my lap at 6 in the morning to read. What did my hyperlexic son glean from this tender tale of parental love? That the periods [translation = full stops] were diamond shaped not round, ergo, he will never read it again as it is too painful on the eyes.

I hear the ear splitting scream that indicates Junior has had a near death experience of the sensory kind. Spouse and I both move as one towards the sound of the rain dancer. As time has past we can both determine what sort of banshee wailing ails him.

He is outside the ‘hated’ bathroom at a safe distance, arms flailing, legs engaged in the fastest type of Irish dancing on the planet.
“Dah door! Dah door! Dah door!” he yells. His arm drops from the elbow, rigid like a train signal to help us understand that he means the ‘door,’ a helpful gesture that is not unappreciated. We adult people, his parents, both look at the door. This is a door that always swings back open, flush with the wall. It may be bad architecture, but it’s good for the children, as it prevents them from being accidentally imprisoned and ensures that an escape route is always available. The door is ajar, only slightly open. Otherwise, it appears perfectly normal. Spouse checks the other side because he is of a thorough disposition. He shakes his head towards me, silently, but his son doesn’t miss this non-verbal cue and utters another agonizing burst ‘Ahgggg!’

No-one is fully dressed. It is a school day. All is not well. More words percolate out of him as his body becomes less frantic; “dah world is upside down or I am dah stoopid one!” Well that’s a great start, something to work on. Spouse raises his eye brows, an indication that his engineering brain is on the matter, trying to connect this particular door with junior’s statement. I wait for him to snap out the answer: Spouse, the one armed bandit! Crank the lever and wait for the read out. He has two pertinent facts to connect. Junior’s rain-dance subsides. He waits. His waiting permit expires.
“I am a fay LEE Yur!” he wails, as his parents struggle to interpret his message and assist him.
“Oooo I wonder?” mutters the father of the child.
“What!” I snap through clenched teeth.
“I was just wondering if this has to do with what we were talking about?”
“What did you talk to him about?”
“Er…..well, we were sort of talking about magnetism……”
“Yes,” I prompt, in what I hope is an encouraging tone.
Junior interrupts, although he appears to be having a conversation with himself: “I will be stuck on dah ceiling!”
“I fear he may have extrapolated!”
“Give me the basic facts,” I demand, as I mentally snap the strap.
Junior interrupts, “I will be dah upside down one!”
“So we got onto the subject of the world, gravitation pull, the solar system……just general stuff……..the way you do……” I resist the urge to beat him over the head and scream ‘spit it out man!’
“And?”
Junior interrupts, “I am boink my head! I will be owie!”
“Well we only got through half of magnetic pole switching when we were interrupted, you know how the toilet vortex spirals in the opposite direction if you’re in Australia…..I think maybe I left him with a slight mis-understanding.”
“You do huh!”
Junior interrupts, “I don’t wanna be in dah Australia, I wanna be in San Jose, but not dah wrong way round!”
“Well something important came up and we didn’t really finish our conversation.”
Junior interrupts, “I want everyfink be dah same. No change gravity!”
“So, to summarize, correct me if I’m wrong, you covered those subjects partially, and now, because the door is swinging in the wrong direction, he has made the mental leap that this is due to magnetic pole switching, therefore he is in the equivalent of Australia and somehow or other, he believes that gravity should go in reverse and he’s about to hit his head on the ceiling, his very super sensitive head? Am I right so far?”
“In a nutshell, I think.”
“Right then! Take your son, any visual cues and props that you need and put him straight!” [translation = correct the science, fill in the gaps, eliminate potential phobia emergence and get him dressed, preferably within the next six and a half minutes]

Wednesday, February 07, 2007

Collateral Damage

I had been mentally preparing myself to deal with the fall out of the death of Jasper the cat with three small children. On-line research and half a dozen well chosen story books from the library were my talismen. This would be a learning opportunity, a chance to grasp at maturity and the meaning of life. I was dreading it. I didn’t know what to expect but I suspected something bad. It is daunting as a parent to know that whatever you are likely to anticipate is most likely to be wrong.

I have always been the sort of person who considers all possible eventualities from the most dire to the slightly off-puting. My options are ranked. I expect the worse, working on the theory that anything less than the ‘worst,’ will be a bonus. With the current generation of children, such mental preparations do not apply.
My daughter adopted the consumer capitalist approach to death; ‘that’s so sad! Can I choose the next one, can it be a white one?’

Junior, was not enamoured with the cat. He had never been closer than a three foot radial distance from Jasper and that incident was by mistake. Since Jasper belonged in the category of ‘wild beast with teeth and claws,’ he appeared slightly relieved that the ‘threat’ had disappeared and showed no interest in a replacement.
Senior son, or rather, ‘devoted pal, confident and cat adorer extraordinaire,’ was sad. Once again I had my neighbour to thank. A crusty, elderly man with a voice like a foghorn and an accent thicker than mud, he announced ‘Seurr hez in cat heaven huh!?’ His pronouncement was taken as an immutable fact, not queried or questioned but accepted. ‘Cat heaven’ was his new mantra. He volunteered this information to random humans that crossed his path and was probably the first phase of volunteering verbal information without a prompt, that we experienced.

A new status quo had emerged without any engineering on my part. There was no egg shell path to tip toe over, peace and tranquility had been restored. Because of this swift and bump free transition,I was not prepared for what followed.

We bumbled through our usual bedtime routine the second night after the accident in the park. [see previous post] 40 minutes passed peacefully and slumbering commenced. I busied myself with the usual night time preparations downstairs in the kitchen. Just before nine, a scream of the ‘axe murderer on the loose’ variety seared my brain. I flew to his bedroom where all the lights were on. My three year old was sitting on his brother’s chest and shaking him violently by the shoulders; ‘DEAD! DEAD! DEAD! HE IS DEAD!”

I checked. He wasn’t, he is merely the heaviest sleeper on the planet. His eye lids lifted to reveal floating unfocused eye balls, because he was deeply asleep. The hypervigilant one was hysterical, frantic and manic. His teeth were bared as he made animal noises and wrenched at fistfuls of his own hair, spittle spattering. He rocked back and forth on his brother’s chest as I tried to manhandle him into a better position.

We spent a troubled night.

The next day I started canvassing the experts, ‘what was to be done?’ He saw death, dying and danger everywhere. He was paralysed. To eat, meant to be poisoned and to die. To walk meant falling and sudden death. To sleep……..well, not so much Morpheus but Thanatos. He would lie down for nano seconds before springing bolt upright terrified and waiting. His hypervigilance was on a hair trigger. Night after night his brother would fall asleep. Night after night I would have a screaming banish hammering on the sleeping chest.

At that time, they were approximately three and four and a half. Neither had ever appeared to be particularly interested in the other. Neither child ‘played,’ and certainly not with each other. The non verbal did not speak, or course, to the non verbal.

Matters took a turn for the worse when sleep deprivation stepped up the pace. Senior started to doze off at random times of the day inducing panic in the little one.
No amount of reassurance, talk therapy, comfort or logic had any impact. The library shelf on the subject had nothing more to offer, as we had read each and every one of them. My own reading suggested that ‘cognitive psychology’ might hold the key, but I was unable to find any reference to patients who were under the age of about 7.
My pals reassured me; ‘it’s a phase / it will pass / give it time.’ I wanted to believe them, but I also knew my son. The word ‘dogged’ comes to mind, ‘will of iron’ comes a close second, but I knew that his mind worked along different pathways that I didn’t fully understand. Each additional day made the obsession become more deep seated, working it’s way into his neural pathways, becoming set it stone.
We tried massage before bed [and inbetween whiles], as well as the usual ‘brushing techniques,’ joint compression, deep pressure, visual imagining CDs, warm baths and distractions, stories for hours, warm milk in bed and to hell with dental hygiene, social stories, [Carol Gray] but all to no avail.

I listened to advice from experienced experts and amateurs. I carefully weighed their words, considered the pros and cons and then tried it anyway. Nothing worked.
After three weeks, desperation was setting in. I had two boys with haggard pale faces and dark ringed eyes. I had an edgy jumpy daughter and the parents weren’t doing much better either.

I thought back to being small and powerless. I thought about the things that had upset me as a child. Most of the incidents of my own childhood were minor and of no consequence in the great scheme of things, but fortunately if you have a trouble free childhood, the tiny ordinary matters are of a greater magnitude, it’s all a question of your starting point. My woes were of an ordinary garden variety that cause ‘stress’; you can’t do that because you’re a girl / stupid / too small. Nothing that dire. But my reaction, then as now, is ‘rat’s to that!’ I believe the modern psychobabble term for my reaction would be ‘empowerrment,’ I chose to act. With some people if you taunt them, they back down, but I preferred to prove them wrong.

The only thing I could think of in this situation was the reality – I believe someone is dying and I don’t want this to happen. Therefore the solution to my mind, was to prevent the death. The way to prevent the death was to learn CPR. I would point out that what know about medical stuff, could be written on the back of a postage stamp, but luckily the internet gave me the basics. One social story later and I was ready to do battle with the deamons. The step by step approach of checking the pulse and so on, meant action. We started by resuscitating cuddly toys [translation = plush toys]. Kinesthetic learners [translation = learn by making your body ‘go through the motions’] was where we began. He observed me and then branched out into trying it himself. We practiced on spouse and much later on his sister, after careful priming. By the end of that one day, we were on the road to ‘recovery.’

This is not a ‘how clever am I!’ posting, this is a ‘listen to your own instincts’ posting. That’s not to say that help from any quarter should be dismissed, only that as a parent, there is the chance that you might already have the ‘answer’ if you can make a match.

It is also a illustrative warning to me, that there are few people as desperate, vulnerable and exploitable, as the parent of an autistic child. If someone had suggested snake oil, I would probably have given it a go.

 
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