Time to clean up your act

Around this neck of the woods where fine motor skills are in short supply, the management relies upon the use of liquid soap to keep hygiene at acceptable levels. Cleanliness for one of my boys, is a high priority, falling into the OCD category. My other chap is indifferent. I sometimes consider allowing the dirt to build up to the level where I can simply chip it off like a crust with a chisel, to save time.
Liquid soap of course is one of those new fangled extravagances of modern life, but I hadn’t realized quite how insidious such shopping preferences can become, especially for one such as myself, someone "allergic to shopping."

I decide to indulge my family. I ponder if I really want to squander this gift upon my unappreciative herd, but the thought of those beautiful bars of soap spending another year on the top shelf of my closet, makes me wince. It smacks of the ‘best china’ or ‘parlour,’ things that are only used on High days and Holidays, imposing an unnecessary paucity on daily life. I pull off the lid to be enveloped in wafts of lemon scent. It even smells clean, which is just how a cake of soap should be.
I am apprehensive in view of junior violent objection to cleaning solutions that involve fruit. I determine to choose my words carefully.

“What it is?”
“It is soap”
“Soap! Soap? It is not soap!”
“It is really. You use it to wash and get clean.”
“Er, no, I am finking dat you are making an accident, not a deliberately.”
“Why?”
“Because dah soap is er…..I dont know er……dis is not soap because it is being hard.” Oh of course, why didn’t I think of that?
“I see. Well this is an old fashioned cake of soap, this is what people used before liquid soap was invented.”
“Cake! Cake? I am never eating it, it is terrible for me!”
“Ah, no, you don’t eat it, you wash with it, just like liquid soap.”
“Not cake?”
“No that’s just the descriptive noun, like ‘pod’ of whales.”

I demonstrate usage of the strange item to my kinesthetic learner. He makes no comment upon the lemon fumes, merely wrinkles his nose. “Here, you have a try.” I realize immediately that it’s a large item to hold for small hands. I also realize seconds later, that it has a hitherto forgotten flaw as it shoots out of his grasp and skids into the other room, an erratic spinning top. He squeals with glee and chases after it. His delight alerts the others that something is afoot. I observe three children gamboling in my kitchen, as smears of soap begin to adorn every surface.

Junior has his own light bulb moment, stops abruptly and takes a marching step towards me. “You know, I fink dat it is fun to be playing wiv cake. We should be having dah chocolate soap because it is smelling nicer than lemon fruit stuff.”

Those moments of self generated problem serving reward us both - isn’t that killing two birds with one stone?

Count ‘down’ for meltdowns

At breakfast he screams at me in a rage of frustration. We have progressed to the stage of 'bowl and spoon acquisition,' a precusor to cereal consumption. The bowl is empty, the spoon close to hand. He yells at me again, “what about the milk?”
I give in and give, fetch the milk and pour it into his empty bowl, as I don’t have enough voice volume to compete after jaw surgery. This act provokes a full meltdown of even greater frustration and rage. Although he has a rule about cereal first then milk, he missed that step in the sequence.

Simultaneously, junior is having a horizontal meltdown on the kitchen floorboards, caused by an absence of his preferred bowl, without which, he is incapable of eating his breakfast. The combined level of screaming is impressive.

Why? To the casual observer these meltdowns seems unreasonable, because the underlying logic is hidden. As adults we have preferences. If the favourite blend of coffee, made in just the right manner is unavailable, we might be miffed, put out, it could ruin the start to the day, but we have learned coping mechanisms to deal with the frustration. For some autistic children, not only have they yet to acquire coping strategies, often they are not able to articulate the source of frustration in the first place. Even if they are verbal, their emotions are so volatile and overwhelming, that this may override the ability to communicate effectively.

The preferred bowl is the easier of the two to explain. Many children have a special something or other. The problem for the autistic child, or rather the parent of that child, is that the special something or other category, applies to just about everything.

As with typical children, generally, this development doesn’t happen all at once, but creeps up on you by stealth. First it’s just a couple of things of no great significance, all perfectly harmless, makes the child more content and everyone’s life more peaceful. Gradually, the list of special items applies to just about everything in that particular child’s life. If you align this principle to both children, before you know it, you have effectively trapped yourself and your children into a rigid cage. Rigidity or what I prefer to term ‘predictability,’ becomes the new ‘norm.’ Deviation from the norm invokes meltdowns.

Whilst there are often complicating factors, depending upon the make-up of your child, the theme is the same; safety, comfort and security are provided by the availability of these props, even if sometimes they serve no practical use, as with the many tiny or particular talismen that accompany every waking, and sometimes sleeping, moments. Preferences for colour, texture, smell, sound when touched, and so on, all can all play a part in the choice, due in part to the sensory make up of the individual.

I know that it is a mistake to slide into this situation in the first place, but it is hard to resist. Once you find that you have buried yourself in this pit, is it a long climb out again. The temptation is to maintain the status quo, to transform yourself into the most efficient air steward in existence, so that they are never ‘without’ whatever it is. [times two] This was the path that I initially chose, although I can’t say that I actively chose it. It was more the line of least resistance, because I was out numbered.

The child that ‘tantrums’ at two for the big yellow duck or die, brings an indulgent smile to the parents. The same behaviour, when the child is 5, 6 or older, is quite another matter. It would be handy for the parent, to cut these ties and free themselves from the yoke. It might also be of some relief to the child, if some of these rigidities could be softened, to relieve them of the agony that they experience each and every time that perfection cannot practically be achieved. It is likely, that as they get older, greater degrees of control will need to be relinquished, because whilst it may be possible to control your own home environment, the world at large has more variables.

18 months ago, junior had 6, level 10 major [translation = severe] meltdowns in the same 40 minute morning period. His older brother varied upon that average. Both could sometimes squeeze in a few more meltdowns into those time period.

Eighteen months prior to that, there were so many meltdowns from both of them, within the same time frame that there were too many to count.

Then and now, it’s a great ratio.

A note [possible solution for some children]
This is a ‘do as I say’ note, not a ‘do as I do,’ note.

The primary commodities required for success are patience and calm in the parent, which are also two attributes that are a bit thin on the ground around here. All children pick up on their parent’s frustration and agitation. Neither assists either individual.

First determine the cause of the frustration. This is the greatest difficulty with my children due to their emotional state causing an inability to communicate. To help find out what it is that’s causing the bother, PECS may help. Even those, or other clues won’t help, unless your child is calm enough to be willing to attempt communication. There are a great number of calming strategies available. For mine, breath control via example [doing it together] and massage, help considerably. Taking the one that is having the ‘problem’ away from the situation that is causing the ‘problem,’ also helps. [I think this is because the visual reminder of the ‘problem’ glaring at him, only makes matters worse, although this is tricky if there are other children around]

The super crush bear hug works for the other. It calms him and lets him know that it’s o.k. to feel this way.
Once you can tease out clues, you then have an opportunity to find a variety of different solutions. This may also be tortuous because many of my ‘adult’ solutions, don’t hit the mark. E.g. he wants a blue bowl, several are available, but none are the right shade of blue. This may be a long exercise to teach the concept of ‘compromise.’

These strategies help at the moment, now. They may not be effective next week, or tomorrow for that matter. Previously, other skills helped, but they don’t now. As your child grows, different things will work or fail, but fortunately this is positive proof of ‘change’ and development. Life would be so boring if it remained the same.

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.

The lowest common denominator [translation = use it or lose it]

[from a couple of weeks back]
Whilst I am allergic to exercise in any shape, form or description, if forced, I would come down on the side of the sprinter. Short bursts of energy and enthusiasm. If such a strategy doesn’t work, then give up. This is not a good parenting style for the autistic child, where consistency and persistence are required over long periods of time.

I emerge from my steaming pit [translation = bed] after surgery. I adopt a vertical position and stumble downstairs. I find my three youngest children draped across various pieces of furniture clutching electronic devices, semi naked. I attempt a verbal greeting but it’s not loud enough and has no impact. As they are content, I make do with bodily contact, a hug that is shrugged off as interference, a stroke of the hair which is flicked off like a wasp and a caress for the one with no nerve endings.


The home help has been hard at work. Almaz has ensured that the house is clean and tidy. Three lunch packs are stacked neatly on the counter. She is a gem, tireless, dedicated and hard working. She dresses them, cleans their teeth, picks up after them, feeds them with a spoon. They have no responsibilities, no chores and no input into their own lives. She is their slave - they adore her.

I consider the time of day. I suspect that my inert children have been engaged in this activity for hours. [translation = plural] I recall that it has also been peaceful enough for me to sleep, which confirms my worst fears.


The Gameboy, Gamecube and telly, are used specifically to elicit compliance. They are motivators, powerful ones. Over a long period of time, you can use these ‘bribes’ to achieve extraordinary things, such as toilet training, eating, or trying to eat a new food, wearing clothes, or maybe keeping your clothes on. As long as you pick something specific [we’ll do this homework sheet /homework question together and then….] the results can be miraculous. As with most matters, it is not a quick fix. You have to start with a small, discrete task that is within their capabilities, with the rigid application of the rules that you have determined to be equitable in advance. If you bend the rules once, the whole matter quickly unravels and you’re back to square one.

It is therefore with some alarm, that I realize that two and a half years worth [?] of painstaking progress has dissolved into a cats cradle. I would like to describe these tasks as ‘my winnings,’ but to be more accurate, they are ‘triumphs of achievement, the culmination of the acquisition of specific skills, and a demonstration of the remarkable accomplishments’ of my children. Or they were.
I can feel my fat lip quiver and my piggy eyes sunk in my swollen face, begin to leak at the thought of square one. I do not like square one, the square of several years ago, I much prefer square 7, where we were three weeks ago, prior to surgery.
I remind myself to ‘pull myself together’ for fear of betraying myself to my children.

Then I remember that I am invisible again, out on the periphery, that I have inadvertently renewed my membership to the irrelevant, relegated and forgotten. A selfish viewpoint. My children are tuned out, turned off and internalized. An even more selfish viewpoint.

I must quickly transform myself from invalid, to taskmaster. I have no option but to take up the reigns and become ‘the enemy’ again. It is not a role that I relish. I would much prefer to lounge around and just let them be. I would be happy to let them exist in their electronic wordless world. A life free from school, therapy, people and verbal communication. A world with French toilets, the ‘hole in the floor’ kind. A monastic silent nudist colony, in an video arcade, where junk food snacks are freely available for refueling purposes only.



The strains of Frankie Laine's 'Rawhide' whisper through my brain ad I start hunting for my dusty whip, ready to renew the marathon.

Visual cues – are you guilty?

He trips over laundry soaking in a bucket as he comes in from the garage.
“Sorry dear, I left it there to remind me to put it on to wash.” He shakes the water off his sock and steps into the kitchen where I’m standing at the sink. He leans on the counter and hastily removes his hand, “oh sorry dear, I’m just leaving their paintings to dry there so that I don’t forget to pin them up before we go to bed.” He stretches past me to reach the soap but tips over the upside down bottles, “don’t tell me, you’re just trying to get the last few drops out, right?” He knows me so well.

The floor is strewn with piles, socks to match, paperwork to be completed, junior’s collection of oral desensitizers to be sterilized, backpacks to be filled, library books to be returned, each an indication of my diminished brain capacity as the years advance. He taps the sack of slug pellets with the tip of his toe, “yet another job?”
“No, I did manage to get out into the garden but the sacks there to remind me to put it away somewhere safe.”
“Great, so of all these things that you want to do, productivity today has been limited to the annihilation of the gastropod population!”
“World peace would have been a better option.”

Learn by observation

Many autistic children are reluctant to make eye contact and mine are no exception. Additionally, they do not naturally orientate their bodies or faces to the person that they speak to. The average person, even when they leave mid conversation, is likely to talk over their shoulder as they depart. To have a conversation with someone who is in a constant state of movement is disconcerting. Generally speaking, it is my habit to attempt to reduce those movements, as it is supposed to help them concentrate on their speech, although I’m not entirely convinced. Occasionally, they manage it all by themselves.

I hang over the sink sputtering ineffectually as junior appears at my side. He lies his head on the counter for a better view, pillowed and protected from the cold surface by his long sleeved arm. “You are a spitter now? We can be doing the spitting togever? You are all better now?” I turn to face him, bespattered by toothpaste, grab a wash cloth and hold it close to my face.

“Do you get dirty when you spit dear?” He cogitates as white foam dribbles down my chin and drops onto the waiting cloth. He puts his index finger to his lips, an affectation that indicates that thought processing is in progress. His pupils sweep my face in assessment. His nose crinkles and eyes narrow.

“Er……you know I am finking dat you need to do the practicing more.”

A fate worse than death

I busy myself in the garden whilst spouse supervises inside. It may be only February but Spring has sprung. Tender shoots have shot. I pause to admire a ladybird. [translation = lady bug] Oh the delight of living in California! Then I step on a snail. Tender shoots and gastropods at the same time. I drop the secateurs and dash inside to execute plan B.

Spouse has plans for two children, so I am left with the short straw. I explain the situation to junior, but he is not impressed with his options; “not dah garden center,” he wails as he runs away at the speed of light. I do not punish merely torture him with this trip. It’s not deliberate but necessary, before the slugs and snails consume all green matter that emerges in the garden.

I make sure that he is appropriate attired for such an expedition; shoes not sandals, long trousers, long sleeved jacket, hat and gloves to ensure minimal skin exposure. I throw the umbrella in the car for good measure, as they have hoses in the garden centre and he mistakenly believes that an umbrella will ward off the evils of wetness.

We set off to the garden of Eden which holds more therapeutic power for me than any spa. Junior does not share this view. For him, there are so many things wrong with the garden center that it would be hard to list them all. The potential for becoming dirty or wet is high on the list objections. Because it is outside, there is also the chance that a breeze may ruffle his hair. Plants and soil [translation = dirt] can smell disagreeable. Flowers, not that there will be many at this time of year, may have perfume. Even if the fragrance is pleasant for most people, for him it is often too powerful. [I think?] The ground is uneven with channels to remove excess water, so that little rivers criss cross the pathways. The shelves drip. The hoses and taps drip. There can be beeping fork lift trucks moving palettes around. They move in unpredictable directions. They jerk and spout plumes of black sooty smoke.

I determine to make the exercise as swift and painless as possible.

I stand at the check out queue clutching a sack of slug pellets under one arm, my other hand securely grasps junior's as he jitters and skitters in a two foot radius. All of a sudden he stops. A gasp of true awe matches his eyes out on stalks. He cannot talk, but he does point. I look but I do not see. His hands cover his mouth as he tried to contain his excitement. I look again but I cannot see whatever it is that has transformed the torture trip into a treat. A little rain dance of joy starts in his tippy tapping toes and then convulses up his body. He’s off at a gallop. I drop the sack and run after him but he stops just as abruptly so that I nearly fall flat on my face. Before him is a big golden coloured ball, a garden decoration I believe.

He admires his warped reflection and grins from ear to ear, “it is dah golden one!” he whispers. I peek at the bottom to find the price and gasp myself. I am about to splutter about the value of a dollar to my six year old as I watch him squeeze his eyes shut, cover them with his hands and then explode in delight again. I put the ball under my arm and return with junior to the check out and the sack of slug pellets.

The ball is strapped into the spare toddler seat next to junior. He lays a palm on the smooth surface to keep it safe on the journey home. He spends the seven minute drive giggling and sighing with adoration. I spend the same seven minutes trying to work out how too explain how a bag of slug pellets could be so expensive to spouse?

I wonder if I could sell him on the idea of it being a lure to get junior to go outside, therapy, but not retail?

Do we have to?

If my mum had suggested that we play a board game when I was a child I think I would have died of joy on the spot. That’s not to say that we never played games, it more that the occasions when we did, were few and far between. Generally we played card games when we went on caravan holidays and other games during the Christmas holidays. Other than that, it would be a real red letter day for such a thing to occur. Perhaps it's something to do with being an older parent?

It is with this mind set that I approach my own children, "older" but not necessarily wiser.
My daughters are always eager, willing and enthusiastic. Not so the boys.

The suggestion of playing a game is always greeted similarly. It is a predictable as night follows day, which is why you need to be mentally prepared prior to commencement. You can pick a game, any game and make the suggestion. The suggestion is made verbally, with enthusiasm, the visual clue of the game box in your hand on bended knee. Assuming that the message penetrates in the first place the response is always ‘why?’ I know this is what they will say, and whilst I thank the speech gods that they are able to tell me this, at the same time, it reminds me that it is often the most simple concepts that are the most difficult to explain – because it will be fun, because we will enjoy ourselves, laugh together…………. Whatever the magic words are, I have yet to find them.

I know that I will have to herd and bribe the boys to come to the table – play this game with me and as a reward you can………… [fill in the current obsession]
Bizarre! The game should be the reward in my book, but that is of course because I have the wrong book and I’m definitely on the wrong page.

So saying, after all these years I have finally worn them down. They will play the game, sometimes perfunctorily and occasionally with a modicum of enjoyment, but I suspect that they’re doing it for me, rather than as a pleasurable form of entertainment for themselves. There again, such selflessness on their part, as well as this additional nugget of evidence to thwart the theory of mind, gives me considerable delight.

Now they will come to the table, muttering the kind of phrases that you get from teenagers when they finally capitulate and agree to do their chores; “Alright, I’m coming,” they sigh, dragging their little bodies over in slow motion, deflated and drained.

Hey, it’s compliance! No complaints from me, and I get to 'practice' teenagers a decade in advance.

If's, when's and maybe's?

"I'm just saying 'if' at the moment. We'll have to see."
"Oh but please, please, pleeeeeeeeez?"
"We've not decided yet, Daddy and I have some more, er, talking to do."
"O.k. so when we get the dog..."
"Not 'when,' 'if' dear..."
"O.k. so if we get a dog, what shall we call her? I like Shyler or Piri or Nelly or.. ooo there's so many to choose from. It's going to be so great, I'm gonna love her soooo much! I've wanted a dog like now foreverrrrr."
"What about you dear?"
"Er? He is a boy? He is a girl? What he is? Um, I dont know, we can call him 'dog' coz he is."
"Right. What about you dear?"
"I call it 'wolf!'"

Crazy Talk

I’m not sure if it’s because they’re autistic or whether it’s the speech delays or some random combination of the two, but now that they talk so much more than I ever imagined possible, far from improving our understanding of one another, it seems to make comprehension some kind of cerebral gymnastic exercise, one that I am not qualified to deal with.

For example, because examples usually clarify, I say to junior ‘go and put your shoes on now dear.’ Note the use of a statement not rather than a request, which would invoke an automatic negative response or meltdown. What kind of a response might a rational parent expect? I suspect that ‘I don’t have any shoes,’ would not be your first guess. If you had personal knowledge of our family, his aversion to texture and shoes, this might be on your radar, but that answer still wouldn’t be the words you’d expect. You might guess ‘I don’t want to wear shoes because I hate them,’ that would be o.k. and logical. The denial of the very existence of shoes, isn’t quite so high up on the expectations league, or at least not on mine.
I used to consider myself quite a linguist, agile in the word department but this doesn’t marry well with my everyday performance, or lack thereof. Time after time I am floored, defeated and dumbfounded, and that’s only within the average hour.
Whilst we skimmed over the issue of using statements rather than questions in the hope of eliciting a response, there is also the matter of giving choices, the A or B type of choice, mainly because for senior, choices are a hardship. So you say to him, ‘do you want a tangerine or grapes?’ Whilst neither are preferred, neither are they loathed, so it’s a choice between two indifferent items. Clever timing on my genius part, ensures that he is hungry before I ask the question, but food is still generally a refueling exercise rather than a social or pleasurable experience. So how will he answer? I can cope with the;

a] I don’t know
b] nuffink
c] no
those are all just fine, we’ve been having those for at least 18 months, it’s the ones that spring out of nowhere to hijack and confuse me. These can take a variety of forms such as the unexpected return question that is off topic;
“You like Pikachu or Absol bestest?” Whilst my knowledge of Pokemon and my sons’s preference for them, I did not anticipate that my question would provoke his question. Alternatively, his response might be a different question, one that refers to an incident 6 months or 6 years ago, that is not related to the current topic either;
“when I was 4 did I have an accident?’
There again we could have the relevant ‘on topic’ question, that still comes out of the clouds to zap the feeble minded brain of the adult;
“Citrus fruits are poisonous? I am gonna die!”

Am I complaining because my speech delayed non-verbal children are less so? Well yes of course I am, that’s what I’m best at afterall, but at the same time it’s such at monumental development that my brain is still lagging behind. The fact that I cannot anticipate their responses reflects my own very narrow field of expectations. It also reflects the fact that they do not have those same limitations, they literally do ‘think outside the box.’ Who wants to live in that kind of a cage anyway?

My synapses and neural pathways are strong, swift and travel over familiar well rehearsed territory. Their’s are relatively unformed, fluid and free flowing. I know where my typical conversations will end up. Conversations with my own boys are uncharted, without a script or map. But maybe it’s better for all of us to travel hopefully than to arrive?

Roll up, roll up, get your spit bowls here!

Handy hint [possibly] no.3

This is more of a mini book review. Many parents have problems with food and their children. This is by no means an exclusively ‘autistic’ matter. Other parents have difficulties with Pica. [translation = eating or mouthing non food items] If your child falls into the former category then this book may prove to be helpful, I hope. It’s called “Just take a bite,” by Lori Ernsperger, Ph.D and Tania Stegen-Hanson, OTR/L. The forward is by Temple Grandin! which is the seal of authenticity for me.

I may have read every book written on the subject, but has proved to be the most effective for my child.

















It explains all the pertinent factors in language that is easy to understand with lots of examples and hints. It provides a planned approach for the parent to implement which removes the pressure so that the whole exercise becomes stress free. but A change in approach for the parent, based upon a greater understanding of the interplay of numerous different factors, means that calm may be restored to your household, I hope.

It may not be a quick fix, but under the present circumstances, a very slow fix is probably about as good as it's going to get around here.

Perfect Pancakes

My children do not eat eggs, amongst many other things, even though only one of them is neophobic. They love the shape of eggs, holding eggs, playing with eggs, buying with eggs but not actually eating them. Whilst their diet is appalling it is just one of the many campaigns that we’re working on. Each child has a narrow diet and has very little overlap with the preferences of their siblings. Separate meals for each individual person with their own set of quibbles can be a challenge for the chef. So a couple of years back when junior entertained the possibility of eating pancakes for breakfast we considered this step to be a major breakthrough. At last we had found one meal where they would all eat the same thing as each other.

As usual, I was not content with this development and started tinkering with the ingredients. Changing the recipe of something that they already eat, is also a recipe for disaster but I forged ahead regardless. The goal? Egg consumption by stealth. Weeks of careful tinkering eventually produced two pancakes per child, one egg per pancake. Result each child ‘eats’ two eggs per week. Cost? One gallon of syrup per pancake consumed, not an idea ratio but another little something that we can tinker with. When I recall the delicate lacey crepes that my mother created I am tempted to hide in my own oven, but needs must where the devil drives.

Hence at their current ages of 9 seven and a half, and 6, after years of meticulous devotion my children consume pancakes with the consistency of India rubber. They’d double as Frisbees if one were so inclined. Not so much a culinary tour de force as reinforced tyre material.

As side issue, which is the one I wanted to discuss was the ‘perfection’ aspect of the pancake in question, not it’s consistency, but it’s shape. A perfect pancake in this household is round. Not only is it round, it is perfectly round. In fairness I only need to make one in three, is perfectly round and ensure that junior is the recipient of my efforts, if I wish him to participate in the eating extravaganza. It’s a very simple formula for success; if it is round he will eat it, if it is not round he won’t and no amount of syrup will persuade him otherwise. Even if you hold out and represent the irregular pancake at snack time, lunch time, next snack time and supper time, be assured that this is a battle that you, or rather ‘I’, am not going to win. I have no idea what perils of consumption worry him so inordinately on this matter, but he will not be budged.

However, during my temporary check out period following surgery, my domestic duties have been severely curtailed. Spouse, the original pancake make of some 15 years experience entered the fray and took up the griddle. Whilst I would like to say that they all cheered him on in his efforts, this would be less than truthful. I had the pleasure of witnessing the presentation of the first tear shaped pancake. The noise that cracked open from his lungs assured the neighbour that he had just been slain to the floor with a stake through his heart. Fortunately he was speechless with shock, so outraged at the concept of non roundness. Even when the screaming subsided he was only capable of half sentences:
“what? / it can’t be / no / never / not elipse / aghhh.” On reflection spouse and I concurred that a non round shape might have been an option if the pancake had been a recognizable and familiar shape. A preferred shape might even have brought additional rewards, but a trapezoid on a early Sunday morning didn’t enter our thought processes, well it doesn’t often, does it?

The other two chomp away oblivious to his angst and make unhelpful comments;
“Hey it looks like a tear and he’s crying!”
“Mine is like a , like a …er. …..it is shaped like a squidgey moon!”
“Actually, it looks like an egg too!” Everyone turns to look at junior’s plate. Everyone mutters in agreement, it does sort of look like a pointy egg. Junior allows his eyes to sweep over his own plate, whereupon he sputters in awe, “it is! It is like an egg! I love it, eggs are my favourite!”

No Compass

Now do feel free to stop me at any time when you’ve had enough, as I do have a tendency to go a little off track on occasions. I won’t be in the least bit offended as I’m well versed in social blunders of this kind. When I first meet someone new, I have a inclination not to mention children, mine or anyone else’s. Do I behave in this manner because I am ashamed? You’d be justified in that opinion, but you would be way off. Unlikely as it may seem, seeing as how I am a Brit, on the contrary, I like to think that I am being considerate to that person. Unless you, the listener, have unusually enhanced social skills, then if someone that you meet, such as me, tells you that they have a couple of autistic kids in tow, that might prove to be a little bit of a stumper. What is the appropriate etiquette when receiving such a piece of information?

I don’t know the answer to that, but I do know that whatever the person says, they at least, feel that it was wrong.

Now I am sympathetic to their plight and that is why I keep mum. [translation = don’t let on] As it turns out, after all this time, it doesn’t really matter what the reply is, as I’ve heard most of them, some of them many times and I can honestly say that I am not in the least bit offended any more. I feel sorry for you, the receiver of the information, because hearing this piece of information makes you feel uncomfortable.

It’s a tricky one though, if I leave it too long before I mention it to you then it can be even more of an unpleasant or disconcerting surprise.
I know that you’re just dying to know what the most common reply is? Well, sorry to disappoint, but generally the one that happens most often is an ‘oh!’ and a combination of a shifty eyes and a weak smile, followed by either a lengthy pause or a rapid change of subject.

But this isn’t really my area of expertise, seeing as how I hale from yonder small island, where ‘body language’ merely refers to rude hand gestures and there are no such things as social skills, merely rules, a hierarchy and a sense of decorum at all times. Now if my autistic children were hoping for a leg up [translation = advantage] in the realms of social interaction, then they basically drew the short straw. Since I’m out here, in Jolly Old California, rather than back there, at least I have the advantage of understanding the not so subtle messages that I exude. The tight face, stiff upper lip, brow frown and rigid shoulders, tell every one to keep their distance without me having to utter a single syllable. My diction may be first rate, my enunciation second to none, but that won’t get me very far with an autistic child because my facial expression doesn’t match my message. If you have a face like a poker, you are wasting your time trying to communicate with them. You need an animated face, a cheerleader’s movements, an Italian’s hand gestures and a tone of voice that is arresting. Without these tools you are wasting your time, you won’t even get their attention let alone permit a message to transmit.

Yes, when dealing with an autistic child, whilst it pains me more than you can ever know to admit it, two particularly loathsome American terms come to mind; ‘in your face’ and ‘on your case,’ because ‘would you mind awfully’ and ‘ when you have a mo’ just don’t cut it. Fortunately, learning to be a ‘citizen’ out here has conferred far more benefits upon me than the mere permission to work.

Early days 2

Whilst I fasted as a youngster at boarding school and I’m aware that there are people on the planet who choose to follow unusual diets, I didn’t really think it was possible to live for weeks on a liquid diet. This is probably because I’ve never had reason to consider such matters prior to my present predicament after jaw surgery. Although I have very particular food preferences myself, I had my doubts about what could be the minimum number of ‘foods’ that would sustain existence without terminal boredom setting in. In the Western world of abundance, it’s hard to think of existing on a diet of only rice or potatoes, but a considerable percentage of the world’s population are in exactly that position and not by choice.

For me it emphasizes that light bulb moment when you realize that something is severely amiss. This occurred when junior was approaching three and senior was in the process of being diagnosed. [translation = a diagnoses generally takes a considerable amount of time for all the evaluations, assessments and observations to be completed prior to the written report.]

We were making our weekly trip to a restaurant in the hope of civilizing and socializing our children. I had just managed to squeeze the little one into the tiny highchair and strap him in without breaking both his legs. [translation = commercial high chairs are designed for babies, not a taller than average three year old] I started feeding him single goldfish at intervals just far enough apart to make the bagful last until we had completed our order with the server. As soon as she left, I whipped out three baby jars of sweet potatoes to feed him. Once they had been consumed, I would move on to surreptitious raisins, his third ‘food.’ His last 'food,' milk, would tide us over before we paid the bill and ran away. The four ‘foods’ status was established.

I fed him with a spoon because he was incapable of feeding himself. I was busy shoveling into the permanently open mouth when a father and two young boys sat next at the next table and quietly ordered their own food. Both of his boys were sitting on chairs, they chatted animatedly although I couldn’t hear their conversation because of the din that my little crowd were making. As I saw the other three year old sink his teeth into a hot dog that he held between his own two little hands, it dawned on me that I was existing on a different planet to the rest of humanity.
I looked at spouse, harried and harangued. I looked at my daughter, sniveling because her brother kept collapsing on her like a deflated balloon. I looked at my oldest son, still incapable of holding any kind of utensils with a diet nearly as narrow as his little brother’s. I looked at junior, wearing a baby bib that barely did up at the back of his neck and knew that I needed my own head examined.

As I had completed all the paperwork for senior I couldn’t ignore that where he scored +10 on a question, his brother would score a -10. Each additional fact had piled up, not exact opposites but as near as made no odds. I looked at his arms and legs poking out from his clothes that were too small and label-less, worn smooth and threadbare since this was the third child. I saw his toes curling around the edge of his Spring sandals now that we were in December because they were the only pair that I could ‘force’ him to wear when footwear couldn’t be avoided. My eyes were drawn to his cupid bow mouth, soft with permanently parted lips, without a functioning muscle for support.

I was tempted to crawl under the table and weep then and there. Instead we went home. I phoned the expert and made an appointment to start the second assessment before the ink was dry on the first.

Handy hint [possibly] number 2

It may be that you have the kind of autistic child that objects strongly to ‘outside.’ If you don’t, just skip this and go and find something more relevant.

If you are truly unfortunate ‘outside’ also includes the garden. [translation = yard] If you find that attempting to take your child outside results in a serious case of the heebie jeebies, then you may also find that you and your child [ren] are trapped within the four walls of your home.

It is probably a good idea to try and find out what exactly is the true nature of their objection to ‘outside.’ This can be tricky if your child is also non-verbal. Some of it may be sensory in the realms of weather, temperature, the degree of light intensity and so on. This list is more or less endless, but again, difficult to pin down if language is not forthcoming. If you’re happy for your house to remain your prison, all well and good, but even the more reclusive parent will find that on occasion, it is necessary to leave the house, if only for a few basic essentials such as food.

With that in mind, it is probably best to tackle the issue before it festers and becomes ingrained, the only other alternative being, that you will eventually leave your house in a six foot wooden coffin.

Now it may be that you are out numbered, one parent versus two children determined to remain troglodytes. You may be able to fool a friend into assisting you with this task, but failing that option, it may only be possible to deal with one child at a time. This is especially difficult, as it probably means that one child will be inside unsupervised, whilst you ‘deal’ with the other one outside. If this is the case place the inside child near a glass window or door with whatever the current obsession is. Whilst it is painful to admit that you are allowing one child to perseverate [push the ladder up on the fire engine, push the ladder down on the fire engine] for 20 minutes, this has to be balanced against the benefit of acclimatizing the other child to the ‘outside.’ Try and ignore the fact that the inside child is oblivious to the screaming agony of the outside child, as this is just a distracter to the parent. But I digress.

What can you do outside that might make being outside less agonizing or possibly more attractive? This depends entirely upon what you have to work with, as each child’s unique make up will determine the outcome. For one of my children this meant lugging out Thomas the tank engine and his numerous cohorts into the garden and seleotaping them to the fence at sight level for a four and a half year old. Whilst I’d like to describe this as a treasure hunt with those pleasant connotations, the reality was more of a screaming rescue mission on his part. Clearly, this kind of ‘game’ requires setting up in advance and it’s essential that the trains should be easily removable for those with poor fine motor skills. Ear plugs may be beneficial for the parent also.

For the other one, I found that the alphabet, shapes and numbers painted on the fence, paths, plant pots and other bits and bobs was a much better fit.
If you can make this a daily ‘exercise’ eventually you may be rewarded by the ability to have both children rescuing their respective preferences at the same time, therefore reducing the parental stress of leaving a child unsupervised in the house.
With luck, much, much later, they may begin to enjoy the experience. Perhaps, much, much later, it might become ‘fun.’

I think most things have the potential to become ‘fun’ when they are no longer ‘new.’

Autism – who has it toughest?

I’ll give you one guess. That’s right! Parents. Does the autistic child bother that he or she is autistic? Of course not. He just ‘is.’
I suspect that different parents have different experiences of autism. There are a certain percentage of parents who receive a diagnoses for their child and embrace the news openly, after a period of adjustment. Such people are the fluffy granola head types of parent. Are they phased and devastated by the news? Does their life come to an end? No, not these troopers, they accept the diagnoses and work with it. They adapt and grow with their children.

Other groups of parents, have a different reaction entirely. These parents are more than severely miffed by the diagnoses. Such parents had a plan, a diagnoses of autism wasn’t in the plan. Most things that aren’t in the plan can be ameliorated, limited or disposed of, but autism doesn’t fit happily into any of those categories. That is the main stumbling block. The anal parents club, of which I am the primary member, hold up the ‘life plan’ and wave it at anyone they can, screaming complaints, ‘not fair! Don’t do this to me!’

My club’s main objection to autism is how it messes with my own life. Members generally have a narrow viewpoint, a small island that signifies their safety zone and an aversion to learning or doing anything new. If the member is also elderly, you can more or less guarantee that the limitations are cast in stone and ingrained. Whilst they give the impression that they lead a full life, in reality they are treading water pending death, whether that is a few years or a few decades away. This parent cannot see that their life is not dissimilar to that of a hamster on a wheel, cannot see past the bars on the cage.

Whilst they may be the epitome of selfishness, fortunately someone arrives with a key, and not a moment too soon!

Early days 1 – battle of the sexes

I had two girls. I knew I could do girls, but as a raging feminist, I was doubtful whether I could manage boys. After a few months of my pregnancy, I suspected that rather than being ‘with child’ I was ‘with boy.’ I found that my favourite staple food, bananas, had turned to poison. I started to seriously consider what I would do if the bump was born a boy?

I would teach him to cook and darn socks. I would ensure that he was in touch with his inner child and his feminine side. I would make him into the perfect mate. What were you supposed to do with boys? Everyone, just everyone always said how different boys were. I was worried.

When the first boy arrived I liked him a great deal. He was cuddly and quiet, a peaceful adorable baby, except if you put him down. He had been installed with a motion detector in his bottom. As long as he was vertical and attached, life was bliss. So the difference between boys and girls wasn’t that great, possibly even preferable. It looked as if I was going to be able to do boys after all!


By the time the next boy came along I discovered another difference between girls and boys. Boys did not like push chairs. [translation = strollers] That was o.k. too. I put the little guy in one of those modern contraptions that straps the baby to your chest and carried the bigger one, both vertical, both quiet.

Of course they talked late, but boys do, don’t they, everyone knows that. It was only much much later that I began to understand something called deep proprioceptive input. [translation – squishing a child helps them become more grounded. It is calming and reassuring which helps them feel safer too] It was later still that the connection between autism and sensory integration began to make sense.


In the meantime, whilst I may look like a stick insect, I have the upper body strength of a building contractor, but that’s what happens if you carry two small people until they reach 45 and 59 lbs respectively.

Mind over matter

I take him outside with me and leave spouse to clean up inside. He sits on the gravel in a pout. It’s not so much a punishment as merely keeping him out of the way whilst spouse labours and manges the other two. The gravel is entertainment for him whilst I continue to plant the flower bed. He is a sensitive little soul at the best of times but is quite content with the gravel. Whilst it would be entertaining for me to have him ‘help,’ to do an activity together, I know that dealing with soil [translation = dirt] is well out of his comfort zone.

My elderly neighbour ambles over for a chat. She’s a Texan who doesn’t mince her words.
“Gee hon, that’s looking gor gee us!”
“Thanks!” I mumble. She doesn’t press me for additional words, as she knows that the surgery has left me speech impaired, which gives her a distinct advantage.
“Oh god! Not that darned stuff agin! Remind me, let me see the packet. I know it works it just makes my flesh crawl. Bonemeal, that’s it!” she pulls a face of disgust being of a vegetarian persuasion. Junior pricks up his ears and leaps to our side, “Bone meal! Bone meal? It is lunch?”
“No yur mother puts it on the plants to make em grow.”
“But what it is dah bone meal?”
“Don ask hon. It’s bones that have bin all ground down into a powder!” I watch his eyes grow as large as saucers in his rigid body that leans backwards. His brain processes this information. A little electrical current courses through his body just before he vomits on the path.

He has a great gag reflex.

Other people’s irritating habits

I feel that Obsessional Compulisve Disorder gets a bad press. General opinion would have us believe that the behaviours that manifest themselves as a result of this condition, are immutable, whereas this appears to be very far from the truth.

With luck, it soon becomes apparent what these kinds of behaviours are for any one individual. Whilst they will play havoc on your daily life that’s not the end of it.

Having identified the issues and developed coping mechanisms, you may feel that all is well, that you have achieved ‘steady state,’ or equilibrium. Although they’ve not been eliminated, they’re under ‘loose’ control. This may lead the unwary parent into a false sense of security.

I hoover [translation = vacuum] with the thoroughness of an American dental hygienist, prior to the arrival of the new sofa. I am careful to wind the cable back neatly on completion, so that it is all ready for next time, especially when ‘next time’ may be only minutes away. Due to the inferior engineering standards in America, I threw caution to the wind, and purchased Superhero Hoover. Although I am mathematically challenged [translation = thick as a brick] even I managed to work out that the annual expenditure on a hoover to replace the broken hoover, was not a sound investment.

I find it interesting to note that for the past few years, I was prevented from using this domestic appliance when junior was in the vicinity. The noise would send him into apoplexy. Hoovering at night seemed like a solution. It wasn’t, which meant that this domestic job was limited to junior free hours only. Since he was the youngest, that was infrequently.

It just goes to show how far we have progressed, into a whole new era really. As long as I warn him first, get the eye contact, hunker down on bended knee before my six year old, he grants me permission to hoover. Now, having given him this warning, ‘mister clean’ has sufficient time to go and was his hands and then hide in his room. Curiously, he no longer hides from the noise. Instead he hides himself from the mental image of the contents of the hoover cylinder.

I knew it was a mistake to tell him that most of the dust was really skin cells, but that’s progress for you.

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.