Clueless

We sit at the table on the last spot of homework, a cross-word for the first grader. Rather than written clues, it has pictures. The last slot is blank. The icon depicts a bowl filled with some kind of liquid and a spoon. It begins with s and ends in p. It is a foodstuff that junior has never consumed. [nor likely to in the near future] I think that he is being awkward.

You would think after all this time, I would be more 'with it,' in the autism department. My learning curve in other areas of my life, is advancing, as evidenced by my ability to understand the humor in "my pal's posting." This is fun, this is progress. In theory it is evidence that despite my advancing years, you can teach an old dog new tricks. At the same time, when it comes to autism, I always feel that I am several step, if not leagues, behind.

His aversion to food ["neophobia"] often leads to difficulties. A long time back, when he was first evaluated, whenever a food item came up in the pictures, he refused to answer, would not say the word aloud. Due to his tactile defensiveness, he also refused to point to the correct answer because then his fingertip would come into contact with paper. It took a wee while to get over that particularly difficulty, until we rephrased the question from ‘which one of these do you eat?’ to ‘which one of these would your sister eat?’

I think we are experiencing the same issue with the homework.

For myself, following jaw surgery, I am so heartily sick of Cock-a-Leekie, Mullagatawny, split pea, puree etc., that I find my sense of humor is under strain.
“Lets think about it shall we? What did I have earlier today for a snack?”
“Er, you are having dah chocolate milk,” he drools in a breathy tone.
“Yes, but not that snack, that is a snack that you drink, this is a snack that you eat.”
“Oh.”
“Can you think of anything else perhaps? What did I have later, the thing that smelt bad?”
“Everyfink dat you eat is smelling bad except dah chocolate milk!” I seem to have mislaid my ‘thinking out of the box’ skills, and a small sigh escapes.
“How about I show you a tin of it?”
“You have some in a tin?”
“I do. I have lots of tins of it!” I nip out to the garage and return with an armful of tins to park in front of him on the table. “There you go. What are these?”
“Dey are cans. Cans is beginning wiv dah ‘c’ and is ending in dah ‘s’. Dat is bad. Dat is not dah right answer. I am a bad student. Mrs. Ko will be giving me dah bad grades because my brain is too tiny today!” He weeps and his head drops to his arms on the table. It’s frightening how quickly he can spiral down into despair. They are real tears.
“Not at all, you are very clever and a great student. Now how about we read the words on the can? Look!” He raises his heavy head and dewy eye lashes, "it is saying 'soup,' I already am knowing dat but it dah wrong answer.”
“No! It’s not, it’s the right answer, you knew it all the time, how clever you are.”
“What! What? What! ‘Soup’ is being dah right answer?”
“Yes dear! You’re right!”
He spits and stutters, bristles and sputters, “but, but, but ….you said it wuz for dah eating kind of food! You are dah idiot! Soup is dah liquid, so you are drinking it not eating!”

From Velcro to zipper

If I had known that bearing children would also mean investing in a truck load of Velcro, I would had bought shares in the company whilst they were still in vitro, but no-one warned me.

To be fair, not many people would have predicted this eventuality. Even now, one of my son's has a serious dose of tactile defensiveness and supersonic hearing. Those two qualities are firm indicators that would guarantee that Velcro, with it’s scratchy surfaces and noisy ripping sounds, would be banned.

However, as it turned out, it soon became the case that PECS with their Velcro backing, ruled the world, or our little corner of it. As long as I didn’t rip them off willy nilly, just kept them on the board, all would be well. Rearranging PECS, adding new ones, removing out moded ones, became a clandestine activity for me. During the wee small hours when everyone slumbered, I would lurk in the kitchen, setting up the PEC board for the next day.

Velcro exists in other areas too, such as shoe closures, an essential tool for any child who has yet to graduate to shoe laces. This is a common enough issue for most young people, but if your fine motor skills are a bit dodgy, it could be a number of years until you can master this feat. Since zips are also a bilateral nightmare boys often transition to them via a Vecro fly in their trousers.

I suspect that most parents feel that raising Frederick or Gemina, is more of a marathon than a sprint. They look forward to the distant time when their child becomes independent and no longer their responsibility. Some older parents and grandparents, also know that the ‘responsibility’ does not end until they themselves are pushing up the daisies, and probably not even then. Whilst I rant and rave about my children’s capabilities and shortcomings, not infrequently, I have cause to note that the ‘spectrum’ is just that, a range of [?]………..possibilites.


We attended the charity bash [translation = benefit] a uniquely American experience, for "Parents Helping Parents [PHP]" Since we are in California, people were dressed accordingly, casual, which includes shoes and shirt, as well as a considerable number of posh frocks. [ translation = fancy dresses] For the purpose of clarity, I should point out that no-one was in costume. [translation = fancy dress] The parents of special needs children enjoyed the company of like minded people, if they had baby sitters. Everyone looks "'normal'" but you can never really tell can you?

The bidding process started for some very worthy prize in the auction after dinner. I continued to chat to my pal in quiet tones. The wine had flowed and there was a great deal of hub bub. My hands operated in conjunction, to help me get my message across. A rogue alien hand, rested on my arm to warn me “careful! Someone will think that you’re bidding with all that waving around.” My hands dropped to my lap, as I wouldn’t wish to be mid-understood.

I nipped out to the loo at an opportune moment. Down the far end of the corridor [translation = hall] a middle aged man knelt on the carpet in front of a teenage boy. The men's restroom was close by. As I went closer, the hub bub of the banqueting hall subsided and his words become audible, “you’re doing a great job, almost there, you can do it. Pull it up a little bit more. If you hold it in your right hand it will be easier. Left hand holds the fabric. Yeah you’re almost there, just a little bit more. Here let me hold the top, that buckle is in the way huh?”

He stood up and hugged him. He talked to the boy’s shoulder as I brushed past, “you’re the greatest guy, do you know that?”

You see what you want to see.

p.s. "Parents Helping Parents [PHP]" is a fabulous organisation that was started by a couple of mums with special needs kids, at their kitchen table.

Tie yourself up in knots

We concentrate on homework, at least I concentrate on their homework, but they appear to be singularly distracted. Whislt children sit at the table not doing homework, two cats hurtle around the house chasing each other’s tails as well as their own. I drag his attention back to the number of horses in the math problem, or more particularly the number of legs that they collectively own. It is a poorly designed question leading us up blind alleys regarding animal welfare.
“Why they are gallop? Er no, er canter or maybe it is trot?” His fingers tap on the box of snack bars, a visual reminder of the reward to come.
“Why is who, er what dear?”
“Dey! Dey! Why dey are do dat?” His fingers tear at the corner of the box as this child is not averse to the texture of paper.
“Who is doing what dear?”
“Dah cats?” He continues to tap, twiddle and tear, whilst his legs swing and pump under the table.
“Oh! Why are they all crazy dashing about the place?”
“Yes, why dey are dash?”
“Spring fever I suspect.” Giggles and wriggles are contagious.
“No. Spring is on March 21. Today we are March 12.” I examine his face for a hint of humor or sarcasm. None. The fig bars fall out of the box and his hands are all over them.
“You’re right dear! But they certainly are very frisky for this time of the day.” They are all infected with fidgets.
“You’re right! Dat is because day are nocturnal.” I check again. His face is dead pan. Soon those fig bars will be crumbs.
“You’re right dear! They are generally nocturnal. Now, back to the question. How many legs to the horses have?”
“Horses, dey are not nocturnal.” His body is revving up, a pile of wriggling worms, something is on it’s way.
“You’re right dear. Now. Horses. Legs. How many?”
“My homework is finished?”
“Nope, not yet. Here, I’ll give you a clue, it’s an even number because each horse has four legs.”


“Hey! I know! Dis horse walked into a bar,” he explodes with uproarious laughter and tumbles off his chair, as do the other two. I peek under the table, lifting the cloth. Three children roll on the floor together beneath their unfinished homework. So much for neural pathways. "Autism Schmatism," I’m with Granny on this one.

Ursaphobia - whatever next!

[translation = Bear Phobia]
I stagger to the help desk lugging two over sized bags of library books, with the two that ‘won’t scan’ tucked under my arm. The librarian peers over the brim of her bifocals at me. I return the favour. I read the question that she has formulated in her mind but is too polite to voice; ‘she’s never gonna read those in a week! Whose is she tryin to kid?’

Each week I zip into the library and hurl a random selection of books into bags, check them out and zap back to the car with a seven day supply of bribes to remain at the dining room table, or distractions from the horror of what’s on the dining room table depending upon your viewpoint.[translation = food]

She’s right of course, I won't read them all. I will attempt to read them all, but there will be a significant percentage of the books that will fail to meet requirements with one or more persons. Obviously I avoid all books that have teddy bears on them as that is guaranteed, even now, after all these years to strain my son’s powers of tolerance. Whilst there is always the possibility that a teddy may lurk within the pages, at least it’s not there bare faced on the cover, to taunt and torture him.

Now I know what you’re thinking – ‘what has she been doing all this time? How old is that child now? 7? Seven and a half, and she’s still not managed to diminish the bear phobia?’ As usual you are absolutely right, but I’ve been trying to desensitize someone else to other things, not necessarily more important things but more encompassing things, like weather, food and temperatures. In the great scheme of things, the latter are more difficult to avoid, whereas teddy bears aren’t quite so all pervasive.


There again, perhaps you fall into the other camp and think – ‘oh please! Seven and a half and he’s afraid of bears! Get over yourself why don’t you!’ Yet again, I have rumblings like that myself, but it’s a question of degree. I know that his reaction to them is not proportional or rational. It would help if I had some inkling as to what he objects to so strongly, but I don’t. I have given due time and attention to the matter, but what with the speech delay, I’m no further forwarder.

As a result, I’ve just equated it to my own dislike of "clowns." If I have to admit to "Coulrophobia" a fear or rather an innate dislike of clowns, I'm not really in a position to cast aspersions at others. I can’t tell you quite why I don’t like them, but there it is. It’s not as if he doesn’t know a great deal about bears, real ones. Grizzlies, Black, Brown and Polar, as well as more obscure species such as the Spectacled bear, our particular favourite, he has no qualms about. Nope, it’s just the Teddy bear variety of bear that he finds so excruciating.

You would think that friendly little chaps like "Winnie the Pooh" would be exempt from this prejudice, but no.



Once home, I turn my attention to a few other trifles; facial expression being top on the list. Social interactions run a close second. Whilst the kiddie winkies are at school I start some serious in depth research on the outstanding matter. The fear of bears shouldn't really be a social impediment in suburban California, but where autism is concerned, anything goes. For now it whizzes it's way to the top of the list.

I have always been particularly partial to teddy bears myself. I recall a very special bear, a lemon yellow one with golden velvet ears and paws. It was sent from Hamley's by my grandmother to my baby brother, all the way to South Africa. My mother would religiously prop the bear up inside his cot. As soon as she left the room, he would fling it out unceremoniously. The bear became mine my default. Perhaps I should consult him? He might have some insight that I lack? There again, I felt so mortified at having acquired the bear by his failure to recognise that jewel of a bear, that when we returned home to England by sea, I spend my paultry savings on a singularly small and unattractive bear, to give to him by way of compensation. Jumbo Jet Tea Bags, as the bear became known, was cared for with great zeal, until he was threadbare and even less attractive than when he left the boutique.

"Watch out for dem bears!"
"See the bear."
But I'll start another campaign to address the issue of this "phobia" pretty soon. Afterall, if we're trying to 'fix' food, water and temperatures, what's one more phobia thrown into the mix?

Numb, from the neck up?

I park him the throne to do the business. I leave him there on the toilet unsupervised contemplating his knee caps and scabs to return to domestic chores back in the kitchen. The other two lie on the carpet surrounded by enough Pokemon to take over the world. I run my hands over my face, to check how many nerve endings I will enjoy today after jaw surgery? I appear to still be numb from below the bifocals, but my furrowed brow is fully functioning.

Some time later, amidst truck loads of laundry, I realize that I am still a child short. The ‘thought’ chimes with his appearance in the kitchen together with his excuse, “I didn’t pick it! It was an accident!” I look at him, his leg, drenched in blood and the trail of bloody footsteps in his wake. As I wipe him down I glare at his father, the idiot who chose the cream coloured carpet.

The flow of blood from the gaping hole in his knee, where the huge scab once was, is unstoppable. He didn’t cry or notice when he hurt himself in the first instance, nor does he now. It is merely a minor inconvenience in his day. The child is a walking disaster zone, immune to pain. Does he have any nerve endings at all? Rarely have I ever witnessed such a chaotic wiring system.

I hand over the responsibility of Band Aid application to his father and stomp off for carpet triage. All carpets should be sludge coloured, patterned, with texture to forestall the inevitable. I set to work, scrubbing arm all ready for a dose of tennis elbow, or maybe housemaid’s knee. I scrub rhythmically until I notice a tingling sensation in my forearm. I sit back on my heels to evaluate the damage. Difficult to tell at this stage, I will have to wait for it to dry.

“I’m going for a shower now!” I bellow to the chooser of carpets, a warning of impending thunder and a command to supervise small people; pre-empt leakage from anyone. Once the water starts to flow over me, I cheer up considerably. No-one hurt. No real harm done. Time for some mummy therapy. I grab the buff puff, for my version of ‘beauty’ maintenance. I blow out my cheeks like a puffer fish so that there is no risk of impaling myself on my braces and scrub away. I’m sure that exfoliation will reveal a youthful complexion underneath the Rhino hide. Two minutes with the tooth brush and I’m ready to emerge, cleansed, renewed and refreshed.

I bounce down the stairs pulling on a T-shirt. I bounce John Wayne style to avoid tripping over a couple of cats, determined to attach themselves to my ankles. My family are in the family room, parked in front of the telly for Saturday morning cartoons, mesmerized. I park myself in front of the screen to ask, “So what are we going to do today then?” Four people lift their hands to their faces, a rare incident of joint attention:
“What happened?”
“What you did?”
“Mooooooom!”
“Why, why, why you are er,………. what she said?”

The ‘chooser of carpets’ guides me to the loo, where there is a mirror,
“so is red still your favourite colour?
Looks like a serious case of road rash to me!”


Or maybe I’m just shamed face
with a little carpet burn.

Name, rank and number - A new love of speech delays

With homework completed we move onwards, but not necessarily upwards, to the review section. [translation = torture session] Every day we must practice his full name, his address, telephone, date of birth and birthday. We learned these facts a few years ago. We were given specific instructions to learn them forthwith. I am uncertain whether typically developing children have to be specifically taught these things, nor how much difficulty they experience to acquire them. For some reason, this is a common gap with autistic children.

Mine have no interest in their acquisition. Quite by chance I learned that they could absorb them and retain them, if we sang them. Problem solved. Or it was. Now it has recurred.

There are two problems with my solution. Firstly, if you cannot recall the tune, which is often the case when quizzed and under stress, then one cannot remember the pertinent information contained therein. Secondly, in most casual social situations, singing this information to the questioner, is less than satisfactory. Hence, we start again, from square one. I am sorely tempted to search out and hire the supermom referred to in my pal's "sidebar." The task ahead is more painful than pulling teeth, but we soldier on. We may be on it for 3 minutes or thirty minutes, depending upon the number of meltdowns, his, although I may feel susceptible to one myself.

We cover the same daily lengthy explanation as to why ‘singing’ is not allowed. I am uncertain who I am trying to convince.
“One last time. When is your birthday?”
“But I am already done it!”
“I know. You did it two times. Now we are going to do it for the third and last time. Third time lucky!”
"Fird? Lucky? Why is dah fird is being lucky? Dat is dah stoopid one."
"Er, it's just something you say, something that er.....some people think."
"Why dey fink dat?"
"I don't know really, now you come to mention it."
"You are finking dat dah free is lucky?"
"No. Actually I think that seven is lucky." Why did I say that? We're drifting.
"You are dah stoopid one to be finking dat. You are needing to be using your brain."
"You are right. I am wrong. Now come along, when is your birthday?"
“MY BUFFDAY IS DECEMBER FIRST AND I WILL BE 7.”
“Well done dear. It gets easier every day doesn’t it.”
“What size it is?”
“Er, what size is what? Your birthday? You’ll be seven remember dear, we just did that bit?”
“No! What size is your brain?”
“Currently about the size of a walnut I fear.”
“No, dat is not correct. The walnut size is belonging to dah mouse. You are dah human.” I resist the urge to squeak.
“Indeed, you’re probably quite right. What size is your brain?”
“I not sure. I fink it is between dah grapefruit and dah melon, but I am hating dah fruit. Can I fink of dah uvver fings?”
“Things that aren’t fruit?”
“Yes! You are correct.” Oh good, progress.
“How about the size of a football?”
“No! I do not have a pointy brain, that would be owie………. Ah you speak dah English? You are meaning dah soccer ball?”
“I am! What a clever chap you are!”
“Not really, because I only using one furteenf of dah brain capacity.”
“?”

I never seem to know where he picks up these things, but they certainly give me pause for "thought."

Game set and Match

A couple of years back, I came away from my son’s IEP meeting with a heavy heart. At that time he was progressing well, had come on leaps and bounds. However it was at about that same time that I learned a new fact. I’m uncertain how this fact had eluded me for so long, but it had. Obvious as it was, I had failed to recognize that no matter how well they did, no matter how much progress they made, when you compared their trajectory of development, it was still at a lower angle than their typically developing peers.

I’d like to blame this on my poor math skills, but that would be a feeble excuse, as even I, visual learner that I am, can see that one line has a steep incline and the one, beneath it, less so. Maybe I needed a pi chart or a superimposed Venn diagramme to make reality pop out for me, but whatever the case, one day, reality did just that, popped out and reminded me that not only was there a gap, but that as they got older, the gap would widen. It was quite sobering at the time.

One of the specific, neatly tailored IEP goals with his Occupational therapist was for her to bounce a ball towards him so that he could catch it, slightly to one side of his body and then the other side. This was designed so that his eyes had longer to track the ball as it came closer, and was off to one side, so that he would need to align his body in advance, amongst other things.

In the first measurement period, he would achieve this two or three times in every five. During the following period, they would hope that he could catch the ball four or five times in every trial and so on. I don’t know why I found this goal, of all the other goals quite so demoralizing. For him it was a tough goal, for every other child in the school it was a ‘no brainer.’ I was dubious about this goal. I had spent many a long hour, coaxing him to come out into the garden where we could ‘play ball.’ ‘Outside’ was loathsome to him, so I soon dropped that bit and we played ‘ball’ in the house. Of course ‘playing ball in the house’ is not what the average civilized parent encourages. Most parents would read their children the riot act if they were discovered occupied in this activity, but no us.

It is hard to describe the feeling that a parent experiences during this activity. You sit on the floor opposite your child, an animated face, cheerful tone and a lot of superfluous activity. You roll or throw the ball at your child. It hits his body or hopefully his hands, but there is no response. His eyes do not ‘track’ the ball, it’s hard to get him to even look at the ball. You keep your words simple, repeat them often, at appropriate intervals, because it takes time for him to process words. This might be o.k. the first couple of times, but sometimes you can do this for minute upon minute, before he simply lies down and rolls away from you with a wordless sigh. You haven’t even managed to ‘engage him.’ His face doesn’t register ‘pain’ as such, mere indifference, possibly boredom.

With most social interactions, there is just that, interaction. Anyone, parent or otherwise playing with a small child, gets the pay off of seeing pleasure in the child, it is self reinforcing. “Just one more time,” is so hard to resist from the gleeful toddler. When however, there is no reaction, it is much harder to sustain the illusion that anyone is playing.

Depending upon your skill set, I think this is where a skilled therapist is the answer. It is not only their unflagging enthusiasm, but their objectivity, that will serve your child well. It is both disheartening and soul destroying if you are the parent. I would like to offer something positive and helpful at this point, but I am at a loss to know what that might be? If the option of the professional is not available to you, I think perhaps you have to change your ‘mind set’ as we Americans say. I’m not sure what exactly that ‘mind set’ is nor what it is called, but it does exist and you can do this too.

There was such a long way to go.

I am in the kitchen at first light, [when am I anywhere else I wonder?] when the boys appear. They are naked from the waist down, clutching pyjama bottoms and pull-ups. Following our group hug when, two small craniums collide with a clunk, I go about calming the walking sqaulking wounded. Junior continues to wail, quite reasonably. I pay heed to the additional lumps forming under his hank of hair, and pay no heed to his older brother who is oblivious to pain. The corner of my eye detects movement. I turn to watch him as he chants, because chanting is easy first thing in the morning, when you have a full compliment of words available to you, if you’re a non-verbal type:

“I………HAVE……….A…………DRY………….PULL-…………UP!”

With each word, he throws the pull-up to the ceiling where it makes a puff sound and then catches it, as it falls back down into his two open palms.

Mother’s Intuition - Beam me up Scottie!

I hurtle around the kitchen preparing breakfast and starting laundry. I remind myself that we do not ‘start’ laundry, as laundry is always there, a feature of human existence, never finished. I spill a little Borax by accident, my newest, latest and bestest solution to laundry and hard water, but I’m not a ‘believer’ yet. The science of laundry is beyond me, as is the science of IQ tests. I am glad that IQ tests are unsatisfactory when it comes to autistic children. I swig down a mug of cold Green tea, which is supposed to be good for me, my ‘medicine,’ before the caffeine fix.

I pause as light creeps into the kitchen and nip to the window, open it a crack to let in chill air. The road is deserted, I am completely alone. I remember clever experts and acknowledge that many parents may not be objective about their childrens’ conditions. When they told me that ‘statistically, there is a higher incidence of suicide,’ and that medication is a must, it is hard to marry that perspective, with the image of those innocent, blemish free infants. I hear the words but want to cover my children’s ears, because parents have inadequate protection mechanisms.

I sip thick coffee and breathe in the heady scent of Jasmine and Hyacinths, because I am permitted to live in California. I ignore the showy Geraniums, because they were only planted for colour, they have no perfume. Crushing the leaves to release their vapour could become a part time therapy, for me, if not for them. I am glad that as non-verbal children become less so, they reveal unfamiliar neural pathways too me. I remember the expert advising me to check for mental retardation when they were older. Although I am usually careful to adhere to my demure demeanour, I’m still glad that the shock of the words stopped me from slapping him. It is hard to remain credible once you resort to fisticuffs.

Contemplation is cut short by the clumping and skittering of tippy toes at rapid speed. They arrive in a stampede without warning. Junior collapses on the floor retching, as I heave the window closed.

I hug the two vertical ones as she asks “what cha doin mom?”
“Oh just enjoying the garden dear, and waking up.”
“Is that the flowers?”
“Yes, isn’t it a lovely perfume? We’re so lucky to have such clement weather!”
“I like those ones best,” she points to the outrageous Geraniums.
“Oh they’re no good, they don’t have any perfume. That the whole purpose of a flower, to create a beautiful scent.” Junior manages an utterance in a choked tone,
“It is the stinky dat is killing my throat!”
“So they’re not just to look beautiful?” she adds casually.
“Well that too I suppose, but that’s their secondary purpose.”
“What dere tertiary purpose is?” splutters junior, clutching his neck. Ooo I should have anticipated that one. Why do I speak before my brain is awake?
“Er, well, their tertiary purpose is to, er, let me see……I think they’re probably here to make us all happy.” Please protect me from my own feebleness.
“Dey are not making me happy!” Well of course not. Wake up! Get with the programme woman!
“I thought they were to help remove carbon dioxide from the atmosphere?” She was paying attention! I knew that! I just wasn’t thinking ‘science’ at 5:15. “You’re absolutely right. Where would we be without plants!” I ask rhetorically.
“I would be on da planet wiv no smells. I go live on Pluto even doe dat is only a lickle star now.”

Clearly my ‘in’ and ‘tuition’ need re-calibration.

Early Days 4 - Autism and data collection [translation - ammunition]

I have a tendency to exaggerate. I think it's the Irish genes, or maybe just our version of the Irish genes. Everything is 'the most, the best, the superlative,' or it is 'the pits, most dire and worst,' with not a lot of grey in between. As a result of this trait, when we first sought out expert help, I could tell that my version of events was open to question. Because you're involved in the situation, it is difficult to be objective, especially since quite often, you are also that catalyst that sparks the meltdown in the first place.

I would sit in the experts office, with my two angelic boys on the floor, whilst I moaned [in code] about the meltdowns. They provided me with helpful strategies, all of which I had already tried and failed at abysmally. I could tell that my status as subjective, over protective and involved mum, was part of the problem. They just didn't really take me seriously, as evidenced and reinforced by my perfect, if disengaged children.

Any text book that you read on the subject of autism [especially ABA ones] advises that if you want to bring about 'improvements' then first of all you need a 'baseline' from which to measure change. With this in mind, I laboured long and hard to try and come up with a workable system. I went for the lowest common denominator. I would pick a random hour of the day, every day, and count the number of meltdowns that they had, as well as the intensity, duration and recovery time. One form, one pencil and a few to boxes to tick. [translation = check] How hard could it be?

Well, much harder than I thought, of course, but over the following six weeks, I accumulated 'data.' It may not have been 'hard' data and was subject to a mass of flaws, but it was good enough for my purposes. I was not exaggerating, ergo my sanity was still within my grasp.

With my slips of paper in my hot little hand, I was then able to tackle the ABA guru. His initial scepticism dispersed. He had more tactics, as I knew he would, some old ones that were worth trying again, as well as a couple of new ones that I hadn't come across before.

The meltdown crisis phase wasn't over, but I felt more in control knowing that 'things could only get better,' as well as being in possession of another couple of techniques. In times of trouble, we do tend to percolate back to this base point, when the words disappear and frustrations reach their zenith, but there are always new tactics coming along, they are always growing and I know that we're on the up.

Handy Hint number 3

A few years ago my boys did not 'play.' To the untutored eye, my own, it was easy to think that they were playing, but repetitive movements of toys in mechanical or unusual manners, didn't really make the mark.

They were also incapable of doing anything without prompting. An example of this would be when my older son was being tested, as part of his initial evaluation for autism. He was given a school worksheet to complete that was well within his capabilities, but no pencil with which to write. He sat in front of the table looking at the worksheet but did not ask for a pencil. I don't know if he could have asked specifically for a pencil back then. He experienced many a long hour with very few words, an element of the non-verbal. He might have asked for help or intimated his need by gesture, by neither occured. At that time, if anything, a missing pencil would have most likely have manifested itself in a meltdown.

Similarly, if he ever finished a task, he would not initiate the next step, what is sometimes referred to as inertia. He would not 'tell' me that he was finished, merely remain static, roll off his chair or wander off. There was no joint attention.

Had I been at home I would have prompted him, but the 'tester' had given me strict orders not to interfere. It made me realize, reluctantly, how I constantly intercepted, coached and tried to anticipate or forestall stumbling blocks. Instead of using those opportunities to seduce them into speech, I was making the situation worse. I had chosen the 'meltdown free' easy road. I stole their motivation to speak. Why should they bother when they could get what they wanted faster by other means?

In addition, choices, regardless of whether they were preferred or loathed, were a long standing obstacle.

Lastly, independence, even for a few minutes was well out of reach.

This combination of what the experts call 'deficits' left me in a dilemma, what to do and how?

So many of the recommended therapies, be that RDI,[Relationship Development Intervention] Floortime or ABA, [Applied Behaviour Analysis] had an built in flaw, namely, the one-on-one pre-requisit. One of me, two of them. I did try, but it was unsatisfactory because somebody was always left to 'float.' The nub of the difficulty was my inability to find anything constructive to occupy the other child whilst focusing one on one with a single child. Their abilities and disabilities were so different that I could see the sense in concentrating on the one-on-one principle.

If I spent 45 minutes with one, rolling a ball back and forth on the floor between us, engaged, with giggles, some words and prompts, I knew that somebody else was busy examining air particles in the family room.

I needed to find a way to keep one child occupied.

At that time we used PECS, [Picture Exchange Communication System,] small cards with icons. I made a lot of them myself because the standard ones often provoked meltdowns because they had some 'fault.' Faults included line drawings of faces and teddy bears. Both were certain triggers to cause meltdowns.

I decided that if I could teach each boy to spend some period of time working independently, this would allow me to concentrate on the other one.

I bought a binder for each of them and put half a dozen stiff pages in each. They found it difficult to turn 'thin' pages. I Velcroed two PECS to each page. They could choose between two toys or activities, such as lacing cards [tough on the fine motor skills and so less preferred] or magnet play. I made sure that they were on different 'tasks' from each other to avoid meltdowns, triggered by competition or uncomplimentary comparisons. Each page presented two choices, so I could engineer who was doing what, stagger the difficulty level and engineer that the less preferred tasks had a small chance to grab someone's attention.

Each page had a pocket at the bottom. When the task was completed or attempted they could remove it from the page and drop it in the pocket. Frequently this simple act helps reinforce the positive.

All the activities were arranged on the floor for easy access in the right sequence to help build independence. The PEC icon matched each toy to help them make the link between the page and the real thing.

The last page showed that it was snack time. Initially progress was very slow and we stumbled at each and every stage. The goal was to lead them to a point where they only needed spend a few minutes on each page, but in theory, they would be 'done' after 20 minutes to half an hour. A visual timer helped with this so they could see that it wouldn't be forever.

I can't remember now how many months it took before we were headed in the right direction, but gradually they managed to at least attempt the tasks. As they progressed, I added little 'conversation' bubbles to help prompt them to make comments, both to me - 'I'm done' and to each other, 'great job.' I know how artificial it sounds, but imposing a period structure on their chaotic world helped calm them considerably. It also gave them a sense of achievement, accomplishment and helped boost their fragile self esteem.

They knew that once they had done their 'work' they would be given time to revert to their preferred perseverances, a fair trade off.

It was a plan that eventually paid off, although I would add one word of warning for anyone as clueless as myself. If someone learns a new activity in the company his brother, it may well take any number of additional months to break the association, where the activity itself become intertwined with the link of your brother's presence.

I would mention in passing, that whilst I complain and moan about the frequent, explosive tantrums that they both have, it is only in the last couple of years that I've realized that I was the one who taught them to do this. My reaction to the meltdowns was to placate, offer solutions, fix it and fast. Every time I did this, many times an hour, I reinforced the behaviour that I was trying to eradicate. I didn't give them options to solve the problem for themselves, such as speaking. But back to where we were.

I would try to do this every day whilst my daughter was at school. She would sometimes join us if I drifted behind schedule later in the day. I imagine that if you have a typically developing child too, that this technique could be adapted to include them.

I know this won't be a good fit for many people, but for me and mine, it was great, especially for me, because I had peace of mind. I knew that we were all together doing something constructive at the same time, rather than paying the heavy, psychological price, of someone spinning their wheels elsewhere.

Skin so Soft – memories calling

I cuddle up to my younger daughter of the sofa and suggest that soon it will be time for a bath. The boys roll over on the carpet and start to groan at the prospect of forthcoming agonies.
I start preaching;
“You know, I just love baths.”
“Ya do? Why do ya like em so much?” she asks, nuzzling in closer.
“Well years and years ago when I was a little girl, about your age come to think of it, my mum used to take long baths in our tiny chilly bathroom. It was so cold that when she filled the bath with hot water the whole room filled with steam, it was like warm fog. She would wallow in the bath and I’d sit on the floor. We’d chitter chat about this and that. It was lovely.”
“But you weren’t even in that bath. Whatz so fun about that?” I have no adequate answer for her pertinent query, just a misty memory with a haunting fragrance.
“I’m not sure now you mention it.”
“You don’t take baths, you always have showers.” Would that it were ‘always.’
“Good point.”
“Why? Why don’t you have a bath if they’re so great? When DID you last have a bath?” I decide to lie because it is marginally more interesting.
“Well actually, I remember it distinctly. The last time I had a bath was when I was waiting to go to the hospital, when I was pregnant, what er..... [?] six years ago now. I lay in the bath and waited for Daddy to come home, so that we could go together.”
“Hospital!” someone squalks. Oh dear, I mentioned a trigger word. Choking noises splutter from the carpet, “we are dying in dah hospital if we are bath?”
“Not at all dear, that was all a long time ago…” the questions come thick and fast from every direction.
“Why didn’t you get dressed and wait? How could you go to the hospital if you were all wet?” Sometimes you wish you’d never started. I decide that distraction is the only course of action.
“You know Granny used to buy this very extravagant bath oil from Avon, it had a wonderful perfume.” They’ve probably changed the recipe after 40 years.
“Oil! Not bubbles?”
“Er, right. Oil.” Be careful, this isn't going the right way.
“But why?”
“To make you smell nice.”
“Smelly oil?”
“Y….e….s,” I answer cautiously, knowing that I am going down the wrong path. Junior’s talks to the carpet, “oil floats on dah water.”
“That’s right dear, so all the lovely oil slips over your skin and makes it all nice and soft.”
“Dat is dah stoopid fing! Your skin is dirty and den you are wiv oil too, yukky.”

Another little nugget quashed, but it wouldn't do to deny his indefatigable logic.

Early days 3

After the boys had been diagnosed with autism, together with their respective speech delays, I looked forward to the commencement of ‘therapy’ in it’s many and various forms. I went along armed with a notebook and pen, to sit in on the sessions so that I could learn what they were doing and how, so that I could reinforce everything at home. I was also secretly hoping that I would find all their magic tricks. I would learn what I was doing wrong. I would learn whatever it was that I should be doing and I would learn to do it better. I would do it better than anyone else, for longer than anyone else and I would make it work.

Although I had read everything I could lay my hands on but I had the distinct feeling that I was missing something, although I couldn’t quite put my finger on what it was.

From the time of their being diagnosed to the start of therapy I had coped well, or what I considered to be ‘well’ under the circumstances. I knew that the boys were autistic because I had done something wrong, although I wasn’t quite sure what that was either. I had determined, if not to ‘make amends,’ at least to adopt a positive stance to our change of circumstances. I had told the people who needed to be told. We ‘regrouped’ at home and intensified our learning. I put what I learned into practice in an amateur manner, confident that soon, experts would intervene to put us on the right track.

Therapy commenced, an intensive programme for both the boys, individually. I watched and waited. There are few things as frustrating for a parent as having to watch [and pay] for 50 minutes of speech therapy where your child refuses to utter a syllable. I waited to see what would happen, what was the magic key to force him to speak? Sometimes I could do it at home, sometimes I couldn’t but the difference between the two, were beyond me, a mystery. The experts would know. They would teach me, I would learn.

After a few of these sessions where the therapist debriefs the parent on conclusion, I asked what we should be doing at home. I was advised that homework would be very helpful. For that week we should perhaps go to the park. As he climbed up the ladder I should chant ‘up, up, up’ and ‘down, down, down’ on the other side. Additionally, a Nursery Rhyme [I forget which one now] would be of great benefit.

It was one of the few times that I burst into tears in front of a professional. The shock was profound, I was bereft. That was it? Did she think I had kept my son in a cardboard box under the stairs for the previous three and a half years? There were no magic tricks.

I turned away from my son so that he would not see me weep and attempted to compose myself, straighten my limp upper lip. If I’m honest, I don’t really know what I was expecting from the experts? I was so sure that I was missing something, that there was something else I should be doing or should stop doing, as if everybody else in the world ‘knew’ but that it was a secret that I was not party too.

I’d like to tell you that he ran to my arms for a hug, to wipe away my tears and said “I love you mum,” something uplifting, funny or tender but I can’t tell a blatant lie.

I only had to wait another four years for him to say those words.

Mix and Match - no co-ordination

Well they don't do they! Or at least mine don't. My autistic children keep everything separate, Pokemon in one box, trains in another, Dinosaurs in an old and forgotten one. Their 'play skills' improve with practice, prompting and encouragement, but the idea of giving a Pokemon a ride on a train, or permitting the trains house room in the Pokemon box, is basically a non starter. Even the idea of such a bold step would evoke mass hysteria and panic. Would it be possible to make a 'house' out of Lego for the Pokemon or maybe the trains? Of course not, such cross contamination would be unthinkable! Order must be maintained at all costs. It would constitute a severe blunder on my part to try and jinx the status quo.

I wouldn't mind so much if this was but a thinly disguised 'tidiness' gene. I could also tolerate a little more of the OCD tendencies in this respect, but that's not really the issue here.

In many situations they are incapable of differentiation. They seem 'blind' to the differences or unable to pin point something specific. A cupboard full of food, but they can't 'see' the cereal shelf, the nearest one. Or a barren empty room, with one obvious item of a contrasting colour in the middle of the carpet, but to them it is invisible. But when it comes to toy category contamination, they're as sharp as tacks.

Do I permit this happy state of affairs to continue? Of course not. I take every [many] opportunity to invade their space with a foreign object; a wind-up toy amongst the bricks, a kaleidoscope sneaks into the crayon box, a 'soft' Pokemon mingled in with the 'hard' ones. Do they tolerate the the introduction of such an anomoly? No, they treat it like a virus.

But if you persist, the steady drip, drip, drip, [translation = nag, nag, nag] may eventually take root. For mine I suspect that although part of it is smudging the boundaries of their rigid categories, it is also familiarity as they gradually learn to tolerate a less than perfect world - and we all need a bit of that.

Beauty tip of the day - biproduct of product

"Good shower?" he asks as I appear in the kitchen.
"Er yes, I think." I rub my head with a towel and watch junior roll around on the hard wood floor, one index finger inserted in each nostril.
"What's up?"
"Not sure, there's something wrong with my hair. But he's doing well! Can you see he how brave his fingers are being? Wouldn't have seen that a couple of years ago."
"Hmm, I suppose so." His hand brushes my arm, "how come you're so sticky?"
"Er, not sure."
"Is that some kind of new 'wet look' hair gel?" I pull a strand or two of limp hair out of my eyes, "just conditioner," I haver.
"Where are your glasses?"
"Can't find them. Is he o.k. he's making a very strange noise?"
"He was alright until you appeared."
"Really?" I hunker down to try and decrease the tempo of his rocking so that we can attempt communication. The retching noises are difficult to miss.
"What is it dear?" I rub the shoulder that offers easy access and wait. A couple of minutes later, he recovers enough to escape, commonly referred to as the 'fight or flight' response, but he's kind enough to clarify as he departs, "you are the stinkiest!" I look at my life partner hoping for further and better particulars;
"It does pong a bit,.......but I like it really!" I nip back upstairs to check, as I suddenly have an inkling. [translation = clue]

On the counter I find two identical tubes of gloop. One is hair gloop, the other is body gloop, neither is perfume free. Moral - wear your bifocals before selecting a product to avoid suffocation.

Parenting styles- does culture effect the incidence of autism?

I may have deviant children but their problems are exacerbated, indeed caused, by their parentage. Autistic children shouldn’t be cursed with British parents, they should be nurtured by American ones, or failing that, Italian would do. If I had different children, I would be a perfect parent, or at least a perfect British parent. My children would be silent and well behaved. They would be silent and well behaved or they would spend their lives in the coal cellar. If I had known in advance that California had no coal cellars,then I would certainly have chosen another State to live in. There again, when we arrived, we had no idea that breathing the air and drinking the water would result in fertility for an aged person.

As it has turned out, my children are extremely fortunate to have been born in this country, mainly because we parents have been forced to re-assess our parenting style and adopt an entirely new course. Now if they hadn’t of been autistic we could probably have got away with the old style, but that style, is a particularly bad match for an autistic child = ‘You want me to be quiet? Fine, no problem, I’m more than happy, if not happier, if I never have to communicate with you verbally ever, that suits me just fine and don’t worry about the coal cellar, it’s an ideal spot for me, nice and dark and quiet and I can bury myself under half a tonne of coal, couldn’t be much more perfect. You think this is punishment, well you’d dead wrong, I’m as happy as lark in here, now just shut the door, go about your business and leave me in peace, preferably alone, for as long as you possibly can.’

That’s not the kind of reaction I anticipated. I expected compliance. These days, I don’t expect compliance, in fact I have no expectations whatsoever, it’s much better that way, because every now and again, they’ll tease me with a choice morsel, a tantalizing little possibility that we can approximate what is considered to be ‘normal.’ Luckily, life is so confusing these days, that I have lost track of what ‘normal’ is. Indeed I doubt whether 'normal' is up to snuff. [translation = worth having in the first place]

But American parents do it so naturally, without effort, as if they’ve absorbed parenting skills from the cradle, which is very humbling for the rest of us. If an American person has an autistic child, then they have a head start on dealing with the situation. Not so the Brit. Take a simple request; “Nigel dear? Would you mind terribly taking the cutlery over to the sink for me, when you have a free moment, no rush, don’t put yourself out at all?” This to an autistic child? I don’t think so. You’re not going to get very far with that line, especially if the child is American, as they won’t know what ‘cutlery’ is for a start. [translation = flatware / silverware, though not necessarily made of silver]

Secondly, if there is a speech delay, there are just far too many words, irrelevant words, with a whole clutter of superfluous politenesses, that are lost on anyone not originating from the Mother country. If you couple this with a soft tone of voice, often barely audible, and zero eye contact, you can see that even the very best of children, autistic or otherwise, aren’t going to pay much heed. 'And jolly good thing too!' I hear you cry. None of that mealy mouthed rubbish [translation = trash] for us, we do it the right way, hunker down, gain attention and eye contact, speak clearly and directly, in simple sentences, in an authoritative or excessively cheerful tone, because whatever it is, it’s going to be exciting and fun and we all want to do it, right?

If you can throw in a few hand gestures and the right body language as well, then all power to you, but that’s probably only for Italians or those who have graduated to the advanced degree of parenting. With a typical child, you’re right on. With an autistic child, at the bare minimum, you have at least touched on the chance of success.

Brits are severely disadvantaged by the prevalence of stiff upper lips, which means that the mouth doesn’t move very much, which does not captivate an autistic audience. We’ll gloss over the teeth issue for now, as I see no point in complete destruction with one dental reference.

Suffice to say, that the ‘hands off’ icy approach of many Brits, exactly matches the 'apparent' attitude of many an autistic child. Many of them don’t want to be touched anyway, so you’re just playing into their hands, as it were, or in effect, permitting them to keep their hands, and indeed their whole beings, separate and unsullied by too much demonstrative affection. Other autistic child who may crave physical contact, are going to come up short too.

With the refrigerator mothers theory, a la "Bettelheim - [fascinating but grim]" rearing it's ugly head again, I am inclined to believe that his samples must have been Europeans. Autism may not be genetic but more cultural genealogy? But Europeans are such a mixed bag that it would be mistake to damn the Italians, Irish, Spanish, Portuguese and French in one fell swoop. Perhaps then, it is the more Germanic types that we need to condemn? But they are not known for their reticence. What other country's culture can we blame? Perhaps we need to plot cultural differences throughout the world to see where they proliferate?

Even if we could trace back the cultural differences to Europe and then track them across to the States for a longitudinal study, I think that they would be been watered down and transformed by experience, or is that just the old nature v. nurture controversy?

Fortunately for you, most Brits have no other option but to convert, otherwise what’s the point of being here? However, some people are more pig headed than others, they hold out for a decade, waiting for Americans to revert back to colonial days.

Now those are the people who really benefit from having autistic children, not to mention any names of course. Better late than never.

That darned cat - Is it any wonder!

I rip off the Marigolds and ditch them in the sink so that I don't risk 'wetting' my son. I march into the family room to determine the cause of the irritating skritchy scratchy sound that it driving me barmey.

"What is wrong with that cat!" I scurge.
"Nuffink! He is not 'wrong' he is a good cat!" squeaks the superhero, defender of deviant felines.

"Actually," she says peering over the top of her book, "don't you remember that he's the one with attachment disorder and bonding issues?" My mouth drops open ever so slightly, probably due to weak jaw muscles after surgery. Is she really only nine?
"That's as maybe, but what is he doing? Why is he making all that racket?"
"He not make 'racket' he make scratching noises wiv his paw. A 'paw' is dah foot of an animal." Well thank you for that unrequested clarification to further distract me from the task at hand!

"Yes, dear, but what is his paw trying to do in that drawer?"
"I know I am being mean to him. I will open dah drawer for him in a minute, coz he is too little to open it by himself."
"What does he want that's in there dear?"
"He wants dah little reptile."
"What little reptile?"
"Dah frog." I wonder how he knows this?
"Why does he want the frog dear?"
"Becoz he likes all doz little creatures dat come from the treasure box at therapy." How does he know this?
"Why does he like them?"
"Coz dey are squidgey." Fair enough, not that I'm any the wiser.
"How does he know that they're in there?"
"Becoz of dah smell."
"What smell?"
"Dah smell of the squidgey toys." Sometimes I wonder what planet I am supposed to be existing on?
"I can't smell anything, what do they smell of?"
"Dey smell of squidgey toys." Somebody save me!
"Can you smell them?"
"Of course I can smell dem."
"I can't!" say the eyes over the top of the book.
"I can," says the one who isn't listening and playing with Pokemon in the next room.

The Theory of mind and other minor irritations - don't cry for Pluto, who still has chums

I do not like the "Theory of Mind." A few years ago I'd never heard of it and didn't know what it was. With the arrival of a couple of autistics chaps in our family, I rapidly became aware of this pernicious irritation. For current purposes, we may simply say that it is an inability to put yourself in the shoes of another. [
I would respectfully guide you to a more scholarly account of the dratted theory at
"a bfh"
as I believe that I know [a few of] my limitations.]

It is a very popular theory with experts. I suspect, but have no evidence in support, that it is not quite so popular in other pockets of the population. The hot bed of loathing against this theory, resides right here, within the four walls of my home. I see the 'truth' of the theory often, daily. But I also see the opposite. "What exactly is the opposite of the 'theory of mind,'" you ask? Good question as always. Frankly I don't have the right answer. I don't know what you call it [offers gratefully received] but I know it when I see it, and I see it often, more often, and soon, perhaps more often that I see incidents of the Theory of mind. I am seriously considering adopting 'opposites day,' everyday, where instead of looking for 'symptoms' we will search for 'the opposite' to counter each and every one of them.

Round here, such issues are complicated by the speech delay factor. How can I know that my child is capable of viewing the world through someone else's eyes, if he is unable to tell me that this is what he is seeing? Well, if I pay attention, as I sometimes do, they do have other ways of telling me: body language, mimicry, action.

Now that the speech delays are less so than they once were, I only wish I had paid more attention, or had been better at interpreting what they were trying to communicate by other means.

That aside, I am appreciative of the small acts of kindness that the average child bestows upon the world, seemingly with little effort, to melt the heart of a parent.


It's true, I'm biased and not a scientist. I leave such cerebral exercises to the experts. I'm just a mum, so I'm allowed to make up my own rules. But I do not think that should detract from similar moments displayed by an autistic child. Indeed, lets be totally outrageous and posit that the theory, that autistic children, in many respects, outstrip the limitations of the Theory of Mind with their superior qualities of empathy.

Without digressing into the staggering powers of Temple Grandin in this respect, we can still find many incidents of this phenomenon, in our own autistic children. Not for them the scripted stagnant waters of 'I'm sorry you hurt your knee,' together with appropriate facial expression and body language. Oh no, we soar to un-recognised heights of concordance, where little Sally, Boa, Arcadio, Adarsh, Jerzy, Kona and Muhammed, together with their pals from across the globe, acknowledge that Pluto may be too small to be a planet in today's universe, but that the books that once held truth do not necessarily lie, just because somebody changed the rules.


p.s. Here is a picture of my daughter's plant grown from seed at school. A long tendril comes out to slip round my son's asthma inhaler chamber and then further forward to entwine my soap dispenser gizmo.

First of all, they both notice the tendril and where it's heading. Junior, who has excessive washing tendencies, remarks that 'maybe the plant needs more air.' My older son, with asthma, remarks that 'maybe the plant wants to wash.'

O.k. so I admit it, I've indoctrinated my children with respect to the environment, my lesson plan obviously needs a little tweaking, but who is in whose shoes now! Pass me my slippers before I confuse myself any further.

Visual accuity and 'Jimmy know alls'

It’s my fault, I shouldn’t have called him at just that moment and then he wouldn’t have become entangled in the chair. I wasn’t paying attention to him, so as he walked towards the kitchen, my calling his name like that put him a step or two off course. He is unpeturbed by yet another set of multiple bruises and would be the last to cast blame in my direction. My arms encircle him at the kitchen counter as I check for damage, “what you are wanting anyways?” he asks, brushing off my ministrations. I am impressed that he is following through. So often when you ask either of them a question it doesn’t penetrate the first time, or the second time for that matter. If you start a conversation [translation = exchange] you need to be persistent to extract an answer. Rarely if ever, can I recall him prompting me to finish what I started. I blink and try to remember why I called him over in the first place? Ah yes!

“Look I wanted to show you this!” He looks at the three little plant pots.
“Dey are light Chartreuse or maybe dey are pale lime.” Indeed they are. His interest in assigning the correct colour definition to all facets of his life is a challenge for me. [translation = limited palette]
“Yes, but can you see what is growing in them?” He peers, he thinks, he speaks.
“I know! It is dat time of year again!”
“What time would that be dear?”
“It is dah time of year to grow sticks.”
“Pardon?” I am distracted by a bevy of birds squabbling over the bird feeder, but try and remain focused.
“Last year you grow sticks when I was a little guy. Now I am a bigger guy and it is time to grow sticks again.” Fancy him remembering that!
“That’s right. Now look closely, what can you see?”
“Er I see free lickle smokey black sticks.”
“Good. Anything else?” He peers and squints and squirms trying to come up with an acceptable response.
“Maybe you are giving me a clue?” Great problem solving!
“Can you see a little green shoot perhaps?” He looks from me to the pot and then back to me again to tell me solemnly, “I can see dah little aubergine shoots wiv dah forest green bumpy little leaves.” [Tranlsation = eggplant or purple]
I resist the urge to grasp his skull to my bosom, “you are absolutely right, what great eyes you have.”
“Now I can go?”
“Er sure. Where are you off to?”
“I need my electronics, er dah cable for dah power.”
I open the cupboard door and peer at the jumble of cables searching for one particular adapter in a sea of entangled wires, “Sorry dear, it’s not in here.”
“It is, it is dere, look!” I look. I see a big messy mess, “nope, I think we must have left it in the other room.”
He sighs with one hand on his jaunty hip, shakes his head from side to side, amateur dramatics in action, “ okay, okay, okay, I do it by myself.” With that he clambours up on the counter and retrieves one cable of the many, deftly.

Unprofessional Umpires?

I zip up to the office at school:
“I was just wondering when they were going to start?” I ask the school secretary.
“I don’t know hun but I sure hope it’s soon for your sake.”

I pull a face, because at recess [translation = break time] my little guys are at sea. It has long been recognized that an autistic child often has the toughest time when the structure [translation = scaffolding] falls away and they are left to their own devices. When you observe an autistic child in a special ed classroom facility, you could be forgiven for wondering what on earth half of them are even doing there. However, one glance of the same children at recess, will confirm that any label attached to them is entirely accurate.

For my guys, recess used to mean cowering in a corner , head covered and bleating. For the other, the sensory overload manifested itself in aggression and violent outbursts. Neither child, nor their peers, fared well. Their behaviour also impacted the rest of the school. [translation = mainstream kids] Overall, this was not a happy situation for anyone.

To be fair, I’m not sure of their proper job title, but 'umpire,' [translation = referee] is a good enough approximation for me. It captures the essence of their job’s responsibilities; they have to ensure that everyone plays fairly. [translation = Marquis of Queensbury’s rules please] They don’t constitute a professional body of working people, [translation = no recognized paper qualifications] and are generally referred to as Yard Duty ladies. But at the same time, I can see that this title doesn’t really give full credit to their status in my eyes.

It’s like waiting for the return of the cavalry. These volunteers accept a minimum wage, to spend an hour on the play ground and teach social skills, amongst many other things. It’s also called ‘lunch duty’ here abouts, but it’s not about eating, it’s about children interacting with one another. There is a great deal of interaction between the children but a great deal of it is inappropriate. The children need the expert guidance of the facilitator, so that the children can learn to make better decisions, better choices, that a stick is not the best method of persuasion and that there are other more effective tools, such as words.

For those children that don’t have a great many words, or lack the confidence to attempt to use them, the volunteers are their with on the spot help and encouragement. They are their to reinforce those first tentative attempts, to praise and reinforce, their trials and tribulations. Those children would be the special ed kids, often autistic kids. These women, are in the front line, or the line of fire, depending upon your bias.

They’re there to mix them up, the typically developing children [translation = normal] and the special ed children [translation = those weirdo kids]. And there’s no danger money on offer here. Before the volunteers materilize to take charge, the special ed kids are struggling and the mainstream kids are avoiding. But once the umpires [translation = facilitators] arrive, they ensure that they negotiate. They explain and guide them, each day, every week, throughout the year, until by the time the summer arrives a whole host of new friendships have been developed with their help, and a buffer zone of tolerance protects all the children.

Unprofessional umpires they may be, but for me, they're more a group of unsung heros.

Attitude is everything

I am not much of a 'count your blessings' type of parent; far too wishy washy and sentimental for me. I leave such opinions and attitudes to be flaunted by my American fluffy bunny type of chums.

However, I do know that many persons adhere these kinds of flagrant flights of fancy, and it may just be, that some pals would care to indulge their tendencies. [translation = weaknesses] If this be the case, you may care to flutter over to "Saint Cloud" and get your fix for the day.

Warning - the management does not in any way endorse or positively promote woolly thinking or fanciful philosophies

Tell it how it is

My pal plans to visit me, the recouperating invalid. I glance out the window to see the road filling up with rain, a river. I hear the whiz on my neighbours sprinkler system as it spouts into action, because we are in California.

When she arrives I am busy scrubbing the toothpaste smears off the sofa. I drop a tea towel over the petrified banana that I found under it and wonder how much of a failure the current ‘fruit’ campaign is in reality? I resolve to turn myself into a fruit bat and seek out 6 weeks of fruit in all the usual and less usual places. I try not to be distracted by thoughts of junior and rain and meltdowns and cabin fever. [translation = he is allergic to rain.]

We sit at the table we I sip tepid coffee gingerly and attempt conversation as my elastic bands twang.
“I thought you had cleaners once a week?”
“I do, but that’s a top to bottom affair. I have deal with the day to day, or minute to minute deluge.” I remind myself that I probably don’t have to worry about the ‘whole’ fruits as they’ll just turn into raisins, it’s more the sliced and diced versions that will transform themselves into black, furry mould. I sniff discretely to see if I can detect fermentation? I pay attention.
“I thought you said most people lose weight? You look the same? Sort of.”
“I am the same, 6 to 8 bottles Ensures that. It’s just my face is swollen so I look bigger.” Junior has arrived at the table and waits patiently to tell me something. He is holding his nose, pinched between his index finger and thumb. I know that he wishes to register a verbal protest about the stench of the coffee, as the acrid fumes are offensive to him. I am so heartily impressed with his social skills, by not interrupting that a warm glow envelops me.

“Yes dear? What do you want to tell me lovey?”
“I am here to be telling you somefink else.” I disguise my confusion with a gentle smile. ”What is it dear?”
“I am not talking to you, I am talking to her,” he points at my pal with his other hand, his finger tip dangerously close to her eye. It is hard to tell who he is addressing because his body isn’t orientated to anyone or anything in particular.
“I am saying dat mummy is dah fat one like dah Puffer fish. Not dah Goldfish because dey are being thin in dah face, you see, like dis!” He sucks in his cheeks, concave and purses his lips. I ignore my pal and her giggles. My enthusiasm and warmth for him wanes.

Thanks for the clarification Matey.

Straws and Camels

In San Jose, an urban area, our contact with camels is a pretty rare occurrence, unless you are of a zoo frame of mind. Our exposure to straw is also limited. We generally only experience quantities of straw during October. This phenomenon is closely associated with the festive season of Halloween and Thanksgiving.[translation = Autumn] More often than not the straw is bundled into rectangles, baled. The only other time that we are deluged with straw, is during the non-secular period of Spring break, [translation = Easter] where bunnies, eggs and nests are the main attractions. The eggs evoke straw production of an artificial nature. It comes in a variety of colours and configurations. Other than that, we are pretty much straw free, which is just as well for those delicate creatures who have an aversion to prickly things. [translation = tactile defensiveness]

Two of my children are of a literal frame of mind. They have trouble with idioms, amongst other things. Hence, the phrase ‘the straw that broke the camel’s back,’ causes no end of trouble for us parents. The problem arises at random times of the year, quite often when we are in a non-straw season. It’s odd how often you hear it. It’s frequency of use was not on my radar screen. Now it is. I could probably do with a little advice from one of those literary types with a big brain, such as "Kristina." There's bound to be a Greek god that could make some kind of memory impact.

Every time that those words are uttered, we have to launch into a lengthy explanation, usually the same explanation. The word ‘straw,’ for my two is linked immediately to ‘drinking straws’ rather than the farm variety. It’s only one idiom of many that they have difficulty with.

I am in the midst of recovery from the latest explanation, when spouse arrives home unexpectedly for a supper designed for 2 and a fifth small people. I tinker and stretch the menu whilst we chat.

“How about we watch one of those thingies tonight since you’re back?”
“What thingies?”
“Er, you know! Oh, a CD.”
“DVD?”
“Isn’t that what I just said?”
“Which one?”
“Oh the funny one.”
“Which funny one?”
“You know, the period one.”
“Period?”
“Oh don’t be so obtuse! You know, the period drama, set in the thirties.”
“Er…….?”
“The English one.”
“Which English one?”
“Oh, what is it called again, the one with 'what’s his face' in it.”
“Er……who?”
“Oh……that man, the one you like, the comedian.”
“Jack Dee?”
“No! Rhymes with ‘pie.’”
“Er, Bill Nye the science guy?”
“He’s American you clot, and anyway he’s not funny.”
“Well actually……”
“Oh do come on! The one you bought me for Valentines Day.”
“Oh, Jeeves and Wooster! Why didn’t you say that in the first place?”
“?”

The Neverending Misery of autism

Or why I never answer the phone when they're home! Warning - lower volume on your computer or insert ear-plugs, as misery can be very noisy.

How much misery can you take?


That's it, I can't bear it any more! Did you notice they all had clothes on! Everybody DRESSED at the same time! They almost, sort of dressed with very little prompting. [but I couldn't show you that bit = censored]


They listened to verbal instructions! She has such a way with words. Can you hear me weeping, wailing and gnashing my teeth?
[O.k. maybe not the last bit.] Who needs speech when you can have giggles?

Hope that your day was as splendiferous as our.

Early Intervention is pivotal.

Actuarial skills – 57 varieties

If your home houses a picky eater, you may find yourself spending an unnatural amount of time with fictitious conjectures into the future. [translation = my own food fetish] If your picky eater is also autistic, then the problem magnifies itself into catastrophic proportions. In my son’s particular case, he is the worst kind, worse than a picky or fussy eater. He is a neophobe. That’s right, he’s afraid of neo’s. “What pray?” I hear you cry, “is a ‘neo?’” For current purposes, we’ll say that it is something ‘new,’ which means that he is phobic about eating new things.



A neophobe eats less than 20 different items of food. Currently, he eats 9 'foods,' a considerable improvement on he previous 3 foods, although it has taken us 3 years to reach this staggering pinnacle. Parents should note that it is cheating to count different varieties of Milano cookies. It is cheating to count different brands of cookies that are like Milano cookies, but hopefully cheaper. It is cheating to count Saltines or other crackers. Why does he have such expensive tastes? Who was the idiot who first gave him one of those biscuits? [translation = cookies]

Yes, life is very unfair for the parent desperate in the desire to re-catogorise the primary food groups of the world. If you can call ‘cookies’ a food ‘type,’ [please?] then, whatever configuration they might take on, they still only count as ONE.

For the sake of the mathematically challenged, such as myself, I feel it’s safer to round up, to be cautious. Certainly more optimistic than to round down. So lets say that he’s six years old, give or take a couple of months, so that’s not too much of a stretch. Hence if a six year old manages to consume one new ‘food’ during a three month campaign, this would mean that, all things being equal, during the course of a whole year, four additional foods would be added to his diet. Ergo, by the age of 18, projecting forward, we might reasonably expect that he will have achieved a diet of 48 foods. If we add those foods that he has already managed to acquire during the prior six years, and we must, ‘add’ that is, that would reach a grand total of 57 foods. Could that really be possible? Maybe I should ask "Mr. Big brain,", but since he is also a Brit, I think that automatically disqualifies him, as 'Beanz Meanz Heinz' ain't gonna cut it.

I glug another bottle of Ensure, strawberry flavour, to nourish the body, if not the soul. If I continue to consume my current 5 flavours of Ensure, I guarantee that I will die of terminal boredom. Why are there not 57 varieties of Ensure? Would be possible to survive on 57 flavours of Ensure for an additional 12 years?

However, such projections as to his future gastronomy, fail to take into account risk; risks of failure, unexpected hurdles that can’t be overcome, which wouldn’t be a very thorough job.

Keeping the food seasonal might help with both establishing realistic goals, as well as minimizing costs, as strawberries in February, even in California, are not to be encouraged. My experiments with spinach and brownies have been a culinary coup, but when eccoli invades the crop, the campaign disappeared down the drain very swiftly. There again, the chance of me getting him to eat a vegetable, let alone something green, is probably still several life times away. I wonder how many leap years there are in the next 12 years? Perhaps I should count in light years?