Autism Awareness Month - What are you looking at?

Every so often you have the opportunity to step outside yourself and view yourself as others do. This kind of insight usually occurs when you least expect it. One of the [many] times this has happened to me, was on a fairly ordinary day. When I say ‘ordinary,’ I mean this in the way that ‘ordinary’ had become for us.

As I am the proud owner, [translation = temporary tenuous custody, at the best of times] of two autistic boys.

At that time, they were still on the smallish side, 39 and 45 lbs respectively, which meant that they were portable. Portable was convenient for me, because their legs only functioned on random occasions. [translation = incipient jelly legs] Added to which, they had a strong preference for being both high up and squished. [translation = the latter referrers to deep proprioceptive input, the former has yet to be formally diagnosed]

Thus if you lie on the floor screaming for long enough, preferably in stereo, you soon learn that your poor benighted mother will carry you. It is a good idea to reward your mother at this point by ceasing to cry, as this will ensure positive reinforcement and ensure that she is quicker next time. In you continue in this vein for long enough, before you know it you’ll only need to squeak a bit and just like Pavlov’s dog, she’ll scoop you up. Easy.

If we then fast forward a couple of years after this kind of exposure, we can now clearly see the woman walking out of the occupational therapist’s office towards us. As you watch, two slightly larger children, who have aged a couple of years since we began, scurry on all fours towards the woman, presumably the mother and scurry up her legs like monkeys until they are securely nestled in the waist area, one either side. You, the observer, note that they don’t appear to be twins. On closer inspection you are fairly confident that one of them is larger, probably older, but neither has much to say for themselves and at least that dreadful screaming has ceased. You find it quite odd to see three heads aligned in such a manner that has not been posed by a photographer. You cast your mind back to consider when last it was, that you saw three such heads on the same plane?

One child sucks his thumb, or hand, now that you look a little more closely. The other one has his hands planted firmly over each ear. The woman wears dark glasses, as well she might, shame on her! Now where have you seen those three heads before? That’s right! Of course! Those three little monkeys, see no evil, hear no evil…..

now don’t you say another word!

Parent nil, "monkeys" win again. "This" could be me!

Leisure time

For the Spring break we are at home, with time, lashings of it. 72 days on a "purely liquid" diet, and counting. I whiz up a quick protein shake for myself after a loudish verbal warning to those who object strongly to the sound of all electrical domestic appliances. On completion my daughter requests a banana milkshake. What luck! I avoid adding the spotty bananas to the compost heap. I invite her to join me, a quick lesson. Everyone is in a good humor as we are without a timetable. [translation = schedule] With the routine temporarily shelved, everything is peaceful, apart from the whirring of the liquidizer. [translation = blender] I am careful to instruct her upon the importance of always putting the lid on prior to turning the power on. We giggle at the prospect of a banana spattered kitchen, how bananas quickly oxidize to resemble black slime. What a hoot! I do a quick head count to see who is watching and who might be listening, but we are alone. The boys clean their teeth, or rather eat toothpaste in the bathroom, because the best time to do what you want, is when your mum is otherwise engaged.

By lunchtime, I am peckish. I prepare an adequate [preferred] repast for the smalls and then turn my attention to the nauseating protein shake. Once the ingredients are ready, I plug it in. It is only then, that I notice that I have mislaid the lid. I check all obvious locations. Nothing. My stomach growls rather than gurgles. Perhaps I could put cling film over the top, [translation = Saran wrap] with a tiny hole to allow for air expulsion? A plate? The palm of my hand isn’t big enough. I pause as a naked child jack knife’s from his chair, as a crumb has touched his skin. The other two cover their ears for protection, an instinctive reflect during every meal. He is in full meltdown for a couple of minutes. We are all grateful that it is only a couple.

I re-dress him and advise upon the many benefits of clothing – think of it as armour! Mollified, but not convinced, he complies and returns to his chair for a second attempt, hunkered down if not entrenched.

By mid afternoon, I am more than a little peckish. I sneak away to the kitchen for the protein drink, contemplating when I might find the time to clean the braces. The milk is now less than attractive, room temperature. [translation = warm in California] I decide to have it anyway, as punishment for being so lax. I check the dishwasher for the lid, and the sink, and the cupboard. Where have I put it? A crash from next door sends me scurrying, even though it is not accompanied by death shrieks. Three lizards have ‘escaped’ from their aquarium. Three children attempt capture and containment of same, with less than adequate equipment, namely, their hands. The day progresses.

By the time it comes to tuck them all in to bed, I am sorely tempted just to climb in with them. It hasn’t been that busy a day, quite a pleasant one all told. I can’t imagine why I am quite so exhausted? I go downstairs to start clean up and see the liquidizer harbouring it’s nutrients. I debate. Nearly 12 hours in mid 70’s heat. If I eat it now, will I die of food poisoning or merely have an upset stomach? I am miffed. I should have just mixed it up with a hand whisk or shaken it in a jam jar. I am an idiot. Where on earth did I put the lid? I run a quick inventory around the house as my brain is accustomed to registering things that are in the wrong place – the toilet brush upended in the bathroom to tempt spiders, the plunger upended in the bath to provide a soft landing for the spider, the towels heaped in the centre of the bed to provide a nest for the spider. No. I cannot recall having seen the top to the blender at any time during the course of the day.

I tip it down the sink and finish off. Upstairs again, I deflate into my own bed, wondering when spouse might reappear after another long day’s work. I wonder if he took the lid of the blender to work? By accident? I wonder if by the time dawn breaks I will be a skeleton?

I slumber, restless until he returns. I drift in and out of sleep, with a rumbling tummy.

In the peaceful black of the night we lie together, wordless. I sigh. He's home. A gurgle that would do justice to the sinking of the Titanic erupts from my stomach. “Blimey! What have you been eating?” he accuses.
“Nothing actually.”
He props himself up on one elbow and rakes his hair with his fingers. I explain the finer dénouements of the day.
“You didn’t take it with you by any chance?”

“Of course not! But wait a minute! I seem to remember……..”
He leaps out of bed. I am hot on his heels as he takes the stairs two at a time. He unlocks the front door and nips out barefoot onto the gravel. I hobble behind. He picks up a pink piece of paper in a plastic sleeve with a pebble, a freebie advertisement. It reads 'Weight Watchers - special introductory price.'
I hope the that "neighbours" aren't on watch?
“There you go!” he exclaims, “not exactly disguised but enough to blend in!” Clearly our own "visual acuity" needs recalibration.

We retire to the kitchen, where he rinses it for me and assembles ingredients, as if I have returned to ‘invalid’ status.
“He’s such a little monkey,” he beams. “He must have had to unlock the door and everything…….”
Our eyes meet. Did we both fail to notice that Houdini did a runner? [translation = escaped without our knowledge] What if he hadn’t come back?

“Of course he came back! He’d made his environment safe, sound proofed as it were!” he gestures open handed. [translation = "auditory sensitivity"]

I have a premonition of my future life spent in an unending search for domestic appliances in the garden.

Pets don’t eat pets!

It’s more of a wish than a reality. These words are on the current linguistic loop, the latest "mantra." All of them say it frequently, but two of them say it in continuous periods of up to an hour, that would be stereo of course. Why are they saying it? Because at 5:10 a.m I was not at my best. If you find a cat hanging over the edge of the new, no expenses spared, aquarium, housing two, ‘free from the garden,’ lizards, a woman needs to protect that kind of financial investment. As that frantic furry paw worried the livestock, I have to admit that I tapped him, purely for attention seeking purposes, not to physically punish him. Although we have several water spray bottles around for the purpose of cat education, there’s never one handy when you need one. Corporal punishment has no place in our home, so my actions were duly noticed by the members of the cat protection league hereabouts.

“Why you dun dat to him!” says the first outraged junior member.
“He is our family pet, we love him always,” says the older, more severely speech impaired member, with perfect diction and piercing eye contact. [Link to cat search]
“Er, well, you’re right, but he was getting the lizards!”
“He was playing wiv DJ and Gecky?”
“Not playing! He was trying to eat them! Pets don’t eat pets! Right?” Horror registers on two small faces, even though only one of them is a vegetarian.
To be fair, as the day progresses, I notice that they build on this initial statement adding pertinent phrases designed to re-educate the cats, appeal to their better natures and send them on a guilt trip.
“Pets don’t eat pets! Pets are our friends, not food! How would you like it if we ate you? It’s o.k. we wouldn’t do that to you, I’m jus sayin. If you’re hungry we can feed you other food.” He witters on and on, paragraph after paragraph, a torrent of words, enough for a speech, key note speaker! I think I’m “eating crow,” or should that be “lizard?”

Snappin!

[translation = failure to express oneself adequately and model appropriate behaviour]

I attempt a verbal warning, but end up drooling instead, which severely reduces the impact of my message. But that's what happens when you "fail to research" a matter thoroughly enough prior to going under the knife.

Lately I have had considerably more empathy with my youngest son and his inadequate lip closure. From his earliest days his drool production was supreme, surpassing any dog that I have ever had contact with. [translation = hypersalivation] Then I thought that plastic backed bibs were the solution. A great number of them were utilized throughout the average day, each one discarded as it reached maximum capacity. We were a household of several dozen such items with laundry bills to match. As usual, due to inadequate parental attention, when his neck grew too thick to accommodate the length of strings on the bibs we switched to double T-shirting him, a rare and unrecognised art. Always the glistening chin, the damp T-shirt and the soft open mouth. 'Perhaps he drools because he's concentrating so hard!' was the general conclusion. Strangely, that was in part, the truth. "Oral motor" issues were investigated.

I would hasten to point out that dribbling is not a symptom of autism but it MAY, in some instances, be an indication of poor or low muscle tone. If this is coupled with speech that sounds as if your child has a mouthful of marbles, it would be worthy of further investigation.

Even a sigh also means spittle. My usual state of grumpy has escalated to volatile as I wait for the painkillers to kick in. It has taken me nearly a precious hour to remove all the elastic and replace with newer twangier elastic on my braces, challenging my crocheting skills to say nothing of my patience. I take a deep breath and then seek out the child that I so unjustly admonished.

I take my non verbal autistic child to one side so that I am better able to bury him in a lengthy explanation as to the cause of the higher levels of grumpiness. This is a child that listens best when his body is in motion. This means that whilst technically we are sitting on the sofa together, his body rolls, stretches and squirms, in the way that a cat does when trying to settle. Whilst a cat eventually finds the right spot to nestle done, my son does not.

I explain the ratio of pain to grumpiness in a parent, and possibly other people too. For some reason I feel the need to further justify my parental error and give a scientific version of the same events. Removal of elastic on the braces also removed pressure on the jaw, mouth flies open and floats. When the new elastics are fitted, blood rushes to every nerve ending and screams. I remember to late, that what I know about science can be written on the back of a postage stamp. Why didn’t I think this through before I started? I give up on the scientific explanation and try another tack. It’s as if a nest of money spiders have just exploded in your mouth and are swarming over every surface inside your mouth and over your face and nose.

We clarify the term ‘money spiders,’ together with a visual aid. He points out my error. The spider I have in mind is a red spider mite, not a money spider. He tries hard to hide his scorn at my inferior intellect and poor categorization skills. 46 years on the planet and I appear to be woefully behind in the arachnid department. He takes pity on me and doesn’t dwell upon my error. Mercifully, we move on.

As I close the computer and I check his comprehension. Is this an analogy that works for him or have I just added to his "phobia quotient?" He turns his body in my general direction whilst he jigs his Irish dance, hands clasped in the small of his back, “ you know mum……..for me……for my mouth….it is dah same…….all dah time.”

Can I use that as a definition of "oral defensiveness?"

It would seem that he's not the only one who has difficulty controlling his "body."

Time wasting

My good chum "moritherapy," who does all the psychobabble stuff, gives me a link to an article about how "autistic children read faces and interpret other people's emotional state." It is just the kind of thing I might have benefited from. [translation - at least three years ago]

Some autistic children are "notorious" for their inappropriate responses. Some poor luckless child scrapes their knee at playtime and the heartless autistic child with no soul nor empathy for the human condition, cackles with laughter. Some people are aware that the contrary is true, that in general autistic people have far more sensitivity to others, a greater degree of compassion, it is merely a bad wiring job in the "response department." Faulty cataloging and a dodgy retrieval system means that response 35a comes out instead of 53z.

The "paper" basically tells us that the autistic child is just dandy at reading a person's emotional state from their facial expression, although the paper far more detailed and interesting than that.

This information forces me to count the number of outrageously expensive books I have on this very topic. 'Picture' books with adult text, so that the parent can assist the child in learning this skill. When I think of the tortuous minutes I have wrestled with child and book on the sofa, in a vain attempt to persuade his eyes to look in the general direction of the very expensive book, it makes me want to sigh.

Whilst sighing is all very well and good for some, I prefer action. The most appropriate action for the current situation would be to hit myself on the head, with the very expensive book. More fool me for not realising, that if it is true, that this is a skill that he already had, then is it any wonder that he tried to escape? Diagnoses = terminal boredom.

Future Career in the diplomatic corps

Stop Press! Felines taken captive!

“NO! He has to come down stairs with me. Think of your asthma!”
“But I am lovin him.” [Translation – crushing the life breath out of the poor creature.]
“Come on. Let go of him now.”
“But he is havin Unis! Why I am not having Rascal? You are dah meany!”
“Hey! Hand over that cat. I want Unis and Rascal downstairs pronto!”
“Why you are speak di Italian?”
“It’s American. Let go. Let go now!”
“No you are letting go! His tail will be coming off. I don wunn dah Manx cat.”
“Where did you learn about Manx cats?”
“I don know.”
“What is a Manx cat?” I check because the speech delays strain my powers of auditory processing.
“You are such a dumb ass! It is being dah cat wivout dah tail.” When they attempt to swear with an American accent, my rib cage expands. When they attempt to translate it into English, I squirm – dum arse!
“Both of you now! That’s enough. You cannot sleep with cats!”
“But we are dah lonely ones!”
“What do you mean?”
“We are never havin dah sleep overs.”
“You want to go and sleep in somebody else’s house?”
“No! We are wantin dah uvver friends to be comin to be sleepin in our houses, er, house.”
“So you’re telling me that if we have sleepovers, you’ll let the cats go free?” I need them to remain alive due to their "therapeutic value," as speech therapists.
“Yes.”
“Deal!”
Sorta! How did that happen? Career possibilities open up. Negotiator? Or maybe.....not extortionist!

At least only when exploiting certain lesser beings in the food chain.

Yours,
the amoeba.

In my Grandmother’s Chest

One of my favourite childhood ‘in the car games,’ for long journeys from my own childhood of course, not my own children’s. As I stand at the check out at Target, I stock up on essential supplies for the forthcoming holiday. I have a smug and self satisfied expression at my collection of purchases.

I have enough Play dough for several days because now I am the proud ‘owner’ of a seven and a half year old and a six year old who no longer consider playdough to be the substance from hell. They can touch it, they can squish it, tolerate the stench of it’s perfume, permit their bodies and clothing to be contaminated by it. Ah yes, life is good.

A very smart woman behind me, [translation = nattily attired] surveys the conveyor belt and smiles at me in a friendly manner. The huge carton of pull-ups, 65 – 125 lbs catches her eye. Bit of a give away.

I have enough mouth wash to kill every bacterium from here to San Francisco and back again. Enough ‘Ensure’ to ensure that I will be able to refuel at high speed.

Otherwise I have three of everything. It is always a mistake to try and match gifts to the personality and preferences of an individual child. The net result is always the same, everyone likes one particular item and no-one likes the other two. If you wish to commence warring factions in the confines of your own home then this is the best place to start. Having said that, although each item is identical to it’s fellow, due to the joys of mass production, someone will determine an identifying feature, flaw or anomaly, that will ensure that each is distinguishable, preferred or disowned.

I now have enough cleaning materials to make sure that the house remains sterile. This in turn will enable me to continue the on-going food campaign. In most households, food that falls to the floor is discarded as unsanitary and contaminated. In this household, that rule is reversed, because small intelligent people learn fast. Their solution to any food campaign is to deposit my nutritional choices on the ground. Parents need to acquire nerves of steel, so as to be able to endure the sight of their children licking the floorboards. This is not a job for the faint hearted.

My eye drifts over the contents of the trolly behind me. [translation = cart] I am a dry, old stick of a woman. I refuse to permit myself to make any disparaging assumptions, cast any aspersions or otherwise make judgments about her catering pack of multicoloured, flavoured conhttp://www2.blogger.com/img/gl.link.gifdoms. I have it on good authority that they serve a wide variety of purposes. I determine to remain "open minded," it would be dreadful if my

Jaw Surgery – appearances can be deceptive

"Meanwhile, "I repair myself to the school for pick up time.

Outside on the playground, mothers collect and chat. I update my pals as to my current abilities of speech when an unfamiliar face appears. My pals explain my condition, thus saving me a few syllables. I note the blink of a furrow across her brow. Disapproval. There are a thousand unspoken criticisms adrift, all directly linked to a question of priorities – children are a parent’s first responsibility, everything is secondary, but how much more so for the parent of a special needs child? She phrases her question with care, subtly, with diplomacy. It translates to, ‘what’s an old baggage like you having plastic surgery for, you vain old bat, must have more money than sense?’

I blink and think. Her eyes check out my lanky form, not the slim of elegant physique, but the skinny that turns scrawny with age. I have a light bulb moment. I gird my enunciation to offer, “actually, the procedure is covered by my medical insurance, it’s not cosmetic.”
“Not cosmetic?”
“No.”
“I don’t understand. If it’s not cosmetic why didn’t you have it done when you were a kid?”
“I don’t really know? I did wear braces, but no-one suggested surgery until I came over here.”
“Well, we do have the best in the world. So how is it different now?”
“They join, I can [or could or will be able to ] eat.”
“What did you do before?”
“Eat with a knife and fork, swallow a lot of chunks, have a great deal of indigestion.”
“Has it always been like that?”
“Er, as long as I can remember.”
“No wonder you’re so……..er slim,” she adds, softened. Which confirms that we should "never judge a book by it's cover," even if it is a bit tatty and decrepid like mine.

My chum leans over to offer, “don’t worry, a few weeks without all that string and she’ll be as fat as everyone else.”

What a jolly thought.

Oral Defensiveness – once bitten, twice shy

This is one feature of my youngest son. On the whole, he refuses all ‘new’ foods. A few of years back, my older son, who is also autistic, had a play date with his chum, a typically developing twin. This fully verbal child had energy, enough to spark my child into action. There were few words between them as they spent the majority of their time wrestling. [translation = roughhousing.] These two five year olds ‘played,’ until snack time, when all four came to the table. At this time junior only "ate three things," but we seem to have been working on this forever.

Very occasionally, approximately once or twice a year, he would snatch food from someone else’s plate, stuff it in his mouth and then promptly spit it out again, with accompanying screams.

The friend immediately noticed that junior had a bowl of Goldfish, but not the fruit and chocolate chip cookie that everyone else had.
“How come he doesn’t get any?” he asked immediately.
“He dun like it,” offered his brother, as both boys have speech delays. His friend was not convinced, so I backed him up, “that’s right, he doesn’t like cookies, but he really hates chocolate chip ones.” His eyes narrowed in the knowledge that he had caught an adult in a lie.

The snack continued. The friend decided that there was a conspiracy afoot and so asked him directly, “do you want one?” Junior rarely responded to questions verbally or otherwise. On this occasion, his response was to shade his eyes like a visor and lower his head, so that the vision of the cookies would be obliterated. The friend asked again, louder this time. My son squashed his nose onto the table cloth so as to close his nostrils from the stench of the cookies. The friend glanced in my direction, a quick check to see if the coast was clear. I decided to let nature take it’s course.

“Here, just give it a try. Everyone likes cookies. These are the best. You’ll like them.” Junior squirmed in his chair, became more compact, smaller. “Come on. You’ll love em,” he persisted. Junior curled himself into a nut, the smallest hamster in the world, invisible. “Hey! What’s wrong with you? Eat it!” he commanded waving a cookie at junior’s posterior. He tried a new tactic. “I know, if you eat this cookie then I’ll give you a………” He faultered, perplexed. “Eat this cookie and then you can go and play.” It was a nice try, but was the wrong lure, indeed I was a little short on lures myself. I waited, fascinated. “Eat it now or you’ll go straight to bed without any……” I suppressed all nerve endings to ensure that my face remained neutral. Those tired old phrases each came out, one after another, all of them. They’re the words that parents have been saying since children were invented.

Junior unfurled just enough to allow his tentacle of a arm to reach up to the table for another handful of goldfish. The friend wrenched the bowl away, lay on the table and dangled his own arm like a fishing line, in front of junior’s nose. The cookie waved back and forth, “come on, you can do it, I know you can, just a little bit…..” junior snapped at the cookie and bit off a chunk. It was so fast that the fisherman flinched, sprang back and retracted his arm at the same second that junior exploded like a jumping jack, caterwauling at 50 decibels, hands frantically scraping cookie crumbs out his mouth before running to the faucet to wash the inside of his mouth. The friend watched mesmerized, as junior drowned and gurgled under the flow of water, ripped off all his clothes and hurtled away to hide.

The friend was a statue, eyes like saucers, his body rigid, at attention. He relaxed, lost his stupefied look to add, “he really doesn’t like cookies does he?”

I assumed it was rhetorical.

Lines of communication

I can admit it now. It was one of my more stupid brilliant ideas, but what’s the point in having children unless you can exploit them occasionally? I mean to say, what useful purpose do children have on this planet anyway? Bring back the days of chimney sweeps I say. It’s not as if I was asking that much, in the great scheme of things.

Simple enough, I thought. Here we are, in Jolly old San Jose as the temperatures start to soar into the 80’s, ready to bake my garden to a crisp. In America, many homeowners have the benefits of a sprinkler system, as a precautionary measure. We do too, but it doesn’t work. It has not worked for approximately 3 years.

I determine that a fact finding commission should commence. Where exactly is the system broken? The control panel is in the farthest back corner of the back garden. The sprinkler system, and I use the term guardedly, theoretically extends to the front garden. Having spent several hours flicking the switch on the control panel and then legging it to the front garden to check where the eruptions fountain 40 feet in the air, only to run back to the control panel to flick the switch again off, I am worn out, wet and none the wiser.

I devise a cunning plan, one of many over the years. I will utilize the small people. They will form a line, spread over the distance from the back garden, to the front. Each child will positioned at 'shouting/hearing' distance from the other, whereupon all shall become clear. We will attempt "communication."

I outline the plan together with appropriate visual aides to assist comprehension. The first stumbling block is the ‘outside’ factor. A weeping, wailing and gnashing of teeth ensues, followed shortly thereafter by a stampede to the furthest hidden recesses of the house.

I retrieve a sack of M&M’s kept for the sole purpose of bribery in the face of adversity, if not aversions. I commence the exercise of rounding them up, once again appreciative of my natural sheepdog instincts. Forget Bo Peep, it was the dog who did the work.

I operate in the mode of Hansel and Gretel, verbalizing dire warnings of imminent melting of chocolate. Thusly, they are all extracted from the confines of the house, out into the great wilds of the outdoors. Whilst I’m tempted to lock the door behind me, I resist, which is just as well as I have to return for additional supplies of baseball hats, sun glasses, galoshes and a few talismen, to ward off the evils of sunshine, texture and heat.

I dither as to which child should be positioned where? I need to keep one as far away from the possibility of water droplets as possible. It’s probably best to put the typically developing one, with full powers of speech and minimal phobias nearest the water, further away from me. I’ll keep the most non-verbal nearest me. It sounds like it ought to work. What have I missed?

I flinch for a moment and then dive behind the wall to the control box to flick on the switch. I wait. I listen. I can hear water, lots of water. No words are winging their way towards me from any direction.

I run at the speed of light to the front garden where the fountains erupt in every direction, flooding the garden and the street. There are no children anywhere. I force open the gate which is always sticking, which is good as an extra security measure. I look up and down the road. Nothing. At least there isn’t any traffic either. Where are they? There is "no fence high enough" nor enough "locks and bolts" to keep them in, to keep them safe and now I've just permitted everyone to escape! I check my neighbours in case they’ve sought diplomatic immunity. No-one is home. It is the middle of the afternoon. I notice that the line of M & M’s and the bag are gone. Someone has stolen my children, all of them! I remind myself that junior would never permit anyone to lay a hand on him. Someone must have lured him with the M & M’s! I rush to the back garden in case they’re hiding under a gooseberry bush, even though we don’t have any, gooseberry bushes that is to say. I remind myself that only one of them is capable of hiding. The silence is erie, I am not used to silence, silence is definitely bad news. Is it time to phone the police? I skid into the house which is also silent apart from the thwat, thwat, thwat sound of my soggy socks on the floorboards.

As I lift the phone and wait for the dialing tone I hear a little…….rustle…….a giggle. Phone in hand, I am hot in pursuit. Silence. I stand poised, ears pricked, cloths drip. I adopt "prowl mode," my favourite because I’m so good at it and have lots of practice. I remove the socks to reduce squelching. My eldest daughter’s bedroom door in shut. I open it without a tremour. A double duvet is heaped in the middle of the room. Movement. Life. I hold the edge and whip it off magician style to reveal three squealing chocolate covered children.

Would that we were all so lucky and could avoid "faults on the line."

What is normal anyway?

‘He didn’t have any shorts on today [underpants]’ says the note inside his backpack. I look at my son, blissfully unaware. Although I am not male, I can imagine that clothes without underwear would be,……….uncomfortable, or would be for someone who had the usual number of nerve endings, or failing that, the correct brain wiring to be able to detect that it should be uncomfortable. I muss his hair and concentrate. More occupational therapy? Something to help him connect the dots. He’s always better after "‘brushing’ and ‘joint compression,’" less discombobulated.

When we’re in the car on the return journey home, his legs grind into the back of my seat, extend, relax, extend relax, not rhythmical, but regular. He’ll wear his knee caps out doing that. What am I going to do with him? In the rear view mirror, I catch a glimpse of my daughter, a snapshot, one that mirrors her big sister, the blue eyed one.

Those blue eyes remind me of school pick up two decades ago and a visit to the Headmistress’s office for ‘a quiet word.’ I was advised that underwear was compulsory not optional at school, for all pupils, no exceptions. It transpired that this was not a one off incident. She often arrived in class "without her knickers," with all the underlying implications of such an offense. A left the office mystified.

It wasn’t until the following day, en route to school, that I watched her in the rear view mirror. She removed her knickers with stealth and stuffed them down the seam in the seat. On arrival, I checked the back of the seat, maybe twenty pairs, all colours. I nabbed the culprit for a shake down. Why?
“Why? I only like the pink ones mummy!”


Of course! It doesn’t always have to be autism, it can just be youth and colour prejudice.

Not senile yet! Thank goodness I am old.

Petco aftermath

“Ooo ooo ooo, dont we jus luv him, he is so cutesy wootsy, he is jus so adorable, so pwitty and all, we luv him so, the little big guy.”
“Are you ready for your snack?”
“Woodji, woodji, woo, we luv you!”
“Hey! Food time! Chocolate pudding!”
“Isn’t he just the best?” Rhetorical no doubt.
“Aren’t you jus the smartest kitty katty in the whole wide world?”
O.k.! I get it. Speech therapy has taught you how to compliment.Horray!
“Actually , he a pretty ordinary kind of mongrel cat. Make that feral, Well, nearly feral. Rejected in any case. A second class citizen, er cat.” Now it's time to stop. You are wasting your words. There are only so many per day. Shut up and save them for when you really need them!
“We love you dah best. You are just awesome.”
“Aren’t you hungry? Come on now, you’ve been plaguing me for 35 and a half minutes for a snack. Here it is! Snack time. Lovely snacky wacky time!”
“Gorgeous, gorgeous, gorgeous one, how can any one resist you in your adorable new collar. You are such a little doll guy.”
“Ok. Starve. Like I care.”


“He is dah pridiest cat ever, he is needing an award!” Would you care to generalize, or is that too much to ask?
“Where is the flea medication we bought anyway?”
Spouse appears and offers advice:
“Leave him be! Climb back into your kennel woman!”
So much for non-verbal!
It’s a dog’s life.

Not so foolish

The lengths we go to lure them into the garden.

Maybe not for hours.......

but a few minutes of increased tolerance.






"Happiness" is!

Come in number 2, your time is up - More Painful than pulling teeth

Well most of them are, aren’t they? All those discrete tasks and skills that you need to teach your autistic child, depending upon how low your ‘patience battery’ runs. Mine is always on ‘recharge now to avoid losing all data.’ To be fair, we are on far more advanced skills than we once were, but seeing the dots and connecting them, would appear to be two separate tasks. ‘Your mission, should you care to take it….’ is to connect the dots.

Let’s face it, teaching "social skills" to autistic children is not easy. I’m not talking about P’s and Q’s, nor which knife to use in which order. If only it were that simple. I’d happily teach a course in the art of using finger bowls or sugar tongs, over my present workload. No, we’re talking about the often intangible reciprocal exchanges that are effortless if you are neurotypical but hard to grasp if you have a different skill set.


Now that my children are aware that they have siblings and additionally, sometimes wish to spend time in each other’s company, we find that all too frequently, the other sibling is not in visual contact. Fortunately, we have overcome the ‘missing from visual contact’ equates to ‘invisible, magical, or death.’ So you can see how far we have come.

So how do you go about finding your missing sibling? That’s right, we look for them. We have also mastered this huge step. We do not have to endure a meltdown because we do not have ‘finding’ skills. Yes, we have found our ‘finding skills.’ I no longer have to remind them to use their eyes to look! What a triumph. Now I am witness to various children wandering around the house, using their eyes, looking for a lost sibling. It is too fabulous to describe. However, it’s time consuming.

If for any reason, [many] the searcher fails to find the searchee, that is when the meltdown occurs, much further along the time line. Hooray!

Thus we need to finely hone our searching skills. What else might assist, failing a GPS tracker attached to the forehead? That’s right. Go to the top of the class! We can use our words! How could we have forgotten that one? Which words could we use? Yes! The name of the person that we are looking for, which helps distinguish between different family members and may pre-empt a stampede of responses. It is better to travel hopefully than to arrive.

What else? We could say that ever useful phrase, ‘where are you?’ Everyone knows that one surely? Can we put these two together? Can we verbalize them?..........
Yes we can! Horray.

So the final piece, is to assist the searchee – when you hear someone say ‘where are you?’ then it’s your turn to say ‘here I am!’ You need to respond, you need to use your words………… we’re working on it.

Actually, we probably need to add another last final step. We need to be able to slip effortlessly from searcher to searchee role, and then back again as necessary. Anything else? There’s always something else that I’ve forgotten until I trip over it.

Maybe sometime soon, I will become a deaf mother, as everyone runs around the house screaming each other’s names. I hope.

I think it’s only fair to warn everyone in advance, that if we don’t experience ‘growth’ in this area soon, I will have no other option that to attach retractable washing lines to each one of them, or failing that, elastic.

Secretarial skills

The first secretaries were men because to be a secretary required a unique skill set best suited to the male of the species – detail orientated, thorough and a stiffly starched collar.

It is therefore with some trepidation that I attempt to assist the child that insists upon a writing style that he considers to be an accurate copy of how a robot would write, namely that each letter is formed on a underlying and invisible cube.

His industry in the morning is unfathomable to a bleary eyed parent. My only purpose is to pre-empt a meltdown of frustration that would wake the rest of the sleeping household.
“How you are spell ‘like’?” Instead of saying the letters verbally, I write them on my trusty wipe board.
“How you are spell ‘sumpfing?’” We continue in this mode, until he has a small paragraph. The brave fingers of the tactile defensive child, attempt to fold the paper. He whips his index finger away on completion to blow frantically on the tip, scorched. He turns it to me, to touch my numb lips so that I can gesture a kiss better.

“Where we are live?” I sing him our address to it’s familiar but irritating tune, softly because we are not supposed to "sing our vital statistics" any more. [link] By now his wrist and hand are beginning to tremour with the effort and strain involved. He fumbles with tape, careful to avoid the serrated edge. He exhales, a sigh of exhaustion, the satisfaction of ‘done.’ He spins off the chair and scampers upstairs on his tippy toes, to his bedroom. I follow.

I watch him insert his missive into the mailbox that he has made for his sister, close to the one that he has made for his brother.

I’d like to say that his timing is off. Now that he is less non-verbal, this would seem like overkill. This style of communication would have been infinitely more helpful a couple of years ago when words were a bit thin on the ground. In the future, he may be able to generalize such skills, but I doubt if his social skills will be up to the challenge of "office politics."

There again , maybe that’s part of the “corkscrew” effect, when skills become embedded, connect to each other and manifest themselves in triumphs of progress?

A rose by any other name…beware of train spotters

I run in from the garden covered with muck and compost, undermined by a "caffeine" shortfall. I operate at half speed, due to an "unusually slow" start to the day. I’m careful to hide the secateurs now that tools and cutting tools are no longer categorized as instruments of torture and death. I make a quick head count as the supervisor is otherwise occupied with the computer. My daughter lounges on the sofa with a how to draw book from the library, but she’s careful to note the page count on the school calendar so that she’ll be eligible for a prize in her class. It would appear that the ‘electronics’ cupboard has been pillaged. Both boys are ‘wired’ to their Gameboy and Ninendo games. I go to remonstrate with the supervisor, “how come you’re working at the weekend dear?”
“I’m not.” I wait for further details as his hands hover over the computer keyboard and his eyes are glued to the screen. Nothing is forthcoming. I prompt, “looks like work to me?” A pause.
“Oh! No I’m just er well…..” This is code for ‘you wouldn’t understand.’
“I’m listening. Explain it to me?”
“Well I’m reprogramming the train.”
“The train set in the garden?”
“Yes.” I wait as the screen lures his eyes back as he watches a programme download, the seconds ticking away.

“How is it going?”
“O.k. Still have a few faults to iron out.”
“How will the reprogramming affect it?”
“Oh, it will do lots of cool things!”
“Cool?” Such a dreadful meaningless word.
“Yes.”
“Such as?”
“Well it will go forwards and then backwards and then forwards a little bit…….” he trails off, as do I.
“I think I’ll go and water the garden then in that case.”
He calls after me, “all your tulips standing to attention then, nice and straight!” I do refuse to acknowledge this statement.

Ursaphobia- Whatever next? Addendum

Here are a few more, in case we don't have enough to worry about already?

clipped from psychology.about.com Achluophobia - Fear of darkness. Aphenphosmphobia - Fear of being touched. Bathmophobia - Fear of stairs or steep slopes. Catagelophobia - Fear of being ridiculed. Dystychiphobia - Fear of accidents. Ephebiphobia - Fear of teenagers. Gynophobia - Fear of women. Iatrophobia - Fear of doctors. Mageirocophobia - Fear of cooking. Pteromerhanophobia - Fear of flying. Scolionophobia - Fear of school. Venustraphobia - Fear of beautiful women. clipped from psychology.about.com 10 Common Phobias The fear of spiders. The fear of snakes. The fear of heights. The fear of situations in which escape is difficult. The fear of dogs. The fear of thunder and lightening. The fear of injections. The fear of social situations. The fear of flying. The fear of germs or dirt.

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]

Love you forever – book review by autistic person

Surely it is a harmless enough title for a 6 year old to read? He brought it home from school, although he did not actively choose it. He sits on my lap at 6 in the morning, before anyone else is up. The contents, the story, is a tender one. He reads the refrain in his robot voice, no doubt, just to gladden a mother’s heart…..

‘I’ll love you forever,
I’ll like you for always,
As long as I’m living,
My baby you’ll be.’

It’s on nearly every page. The child grows up, bigger and bigger, but the mother still rocks him in her arms and whispers the lullaby. As he reads the rest of the book, his appropriate expression and emphasis, indicates comprehension, although he omits all the ‘he, she’s and its’ as they are superfluous, not because he is incapable. He squalks at the illustrations, irritated by the sketch lines.

In the final pages the parent and child role is reversed, as the mother is elderly and sits on her now adult son’s lap. That is too much for junior to accept, the sheer lunacy of the thing makes him hurl the book, scowling.

He pauses, jumps up and retrieves the book for further study and review. His eyes flick up to mine to ask, “he is autistic?” This is a word he has never said.
“How do you mean?”
“Dah man is growed up autistic?” This is the devilment of a speech delay for an inadequate parent.
“Why do you think the man is autistic?”
“Coz when he is lickle dere are cuddles, now he is dah big one,... dah man, his mum is squishing him.” [translation = deep proprioceptive input]

The Problem of Pica

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Many of us are familiar with the phenomenon of pregnant women attempting to eat coal, but more commonly, parents first experience a variation on this theme, when their baby becomes mobile. The small person, appears to be an eating machine, whizzing about with their new found freedom only to stuff their mouths with all kinds of inappropriate items. Their infectious delight at this pastime is matched by their parent's trauma. Suddenly, the true meaning of something commonly referred to as 'a choking hazard,' makes perfect sense.

So, what is pica? Here are a couple of options;

pica /pi·ca/ (pi´kah) [L.] compulsive eating of nonnutritive substances, such as ice, dirt, flaking paint, clay, hair, or laundry starch.
Dorland's Medical Dictionary for Health Consumers. © 2007 by Saunders, an imprint of Elsevier, Inc. All rights reserved.
OR
pi·ca (pk)
n.
An abnormal craving or appetite for nonfood substances, such as dirt, paint, or clay.

The American Heritage® Stedman's Medical Dictionary, 2nd Edition Copyright © 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.

I can't say that I find either particularly compelling.

Percentages. How many people have a problem with PICA? It depends upon who you ‘count’ and whether it is a ‘problem’ for them, or the people they keep company with.
Maybe as many as "30% of autistic children."

There are reports of people attempting to eat metal, string and hair, amongst many other things. The last two stand out in particular, not because of the boys, but because of my girls. Earlier research, whilst I was in my usual state of panic, determined that a tiny minority of the population are hair twiddlers. An even tinier sub group are hair nibblers. Why should one worry about hair nibbling, apart from the pica implications? Because hair, unlikely as it may seem, is abrasive to teeth. It’s a bit like gnawing on a Rhino horn, which for current purposes of course, is composed of compressed hair. Nibble your hair and have a big dental bill! There’s even a name for it! "Trichophagia." How many more OCD and orally defensive people can one family encompass?


I have a sudden flash of my sister, mid nibble, 'rabbiting' as my father referred to the habit. I think of all the nail biters in my family, not this generation but the last one, or the one before that come to think of it! One huge fat nibbling gene, no wonder we all have such bad teeth! Dentures for everyone, that's the answer, along with buzz cuts.

Do my children have some of these issues or something closely related? Well that’s what I thought, that’s why I started to check it out all over again, brush up on my research, determine the pertinent facts, because of what I saw. It was only later, the next day that I do the right thing. The right thing? And what might that be? I ask him, of course.


I ask him as he cavorts on the wretched cat scratcher.
“Why are you eating the catnip dear?” He continues to cavort, wordless, with little green flecks around his mouth and stuck to his hair. I wait and count to 15, as he’s about 15 at the moment. I picked this moment because he is happy and when he is happy he is often more willing to communicate with words. He and the cat continue to play.
“Do you like the taste?” I count again as the two of them chase his imaginary tail. The cat is frantic. So is the boy. I am distracted by the plants, the house plants which have been systematically chewed by two cats. If it wasn’t for the cats, I wouldn’t be in this position in the first place. It's all their fault really. If they would just control their house plant abuse tendencies, then I wouldn't have had to smother the cat scratcher with catnip, then I would never have known that my son likes to eat catnip.

I remind myself that catnip [translation = cat mint] is really just a herb, almost a culinary herb perhaps?

I remind myself of a couple of other things. Firstly, they when he talks to the cats or any other animals his "speech delay falls away." Secondly, that when he is 'being' a cat, he will not speak, because cats don't. Very occasionally, I can persuade him, [or is it just luck?] to talk for the cat, be the cat's translator. I am so glad that the school psychologist is not around to witness my chat with the cat.


"Hey Unis! What are you doing?" I ask as I stroke his furry back until he meows.
"What's that? I wish I understood cat." He sparks, my son does that is, to tell me, "Unis! He is very happy today." Let's not get bogged down the the spelling thing, or the sex thing, just accept that Unis is a wrongly spelled version of Unice, which of course is a girl's name.
"Why are you happy Unis?"
"BEcause he loves catnip. It makes him all......crazy."
"SO you two are just enjoying a snack together, like pals?"
"Yes, we're just foolin around wiv each other."
"Does he like the taste of catnip?"
"Kinda, but not really, at least, I don't like to eat it, I'm just playin along wiv him coz we're friends."

Moral = to ensure maximum productivity, make sure you are worrying about the right things.

"Pica resources"