7 Tips - Coping mechanisms for parents of children who have just been diagnosed with autism

1. Make sure that you are alone. Scream as loudly as your lungs permit, for as long as you are able. Cry until you are incoherent. Ensure that you have an adequate supply of tissues. [translation = several catering sized boxes of Kleenex]

2. Take a damp cloth and wipe your face until your breathing returns to approximately normal. [translation = your regular breathing rate]



3. Visit or phone a true pal [translation = friend] and/ or relative [translation = family member] and talk. Advise them that you are likely to blub [translation = weep] and that they do not need to respond merely listen.

4. Start reading the paperwork that the professional who diagnosed your child gave you. N.B. If the pile of paper is too heavy to carry skip to the ‘recommendations’ page. N.B,B. make sure that you have a medical dictionary with a large font size at your elbow for reference.




5. If you find that your brain has shriveled to the size of a pea and that you are incapable of taking in technical information, push the paper work to one side and go and do your favourite thing instead. If you discover that your favourite thing is not working, do not worry, normal service will be resumed in the future.









6. I tell you truly that things will improve and that you CAN do this.






7. Seek out aforementioned child/[ren], the same child/[ren] who now owns a new label. Hug and kiss that same child/[ren] with or without labels.

And then there was light

I pick up the last few bits and bobs so that I don’t trip over them in the morning. An assortment of tiny things that are of great importance for junior. At 1 a.m. I fall into unconsiousness to recharge the batteries.

A small figure appears in the gloom to yell “where it is? Da ‘glow bit’?” I peer at the LED, one inch from my nose, two inch numbers, which tells me that it is 5:40 in the morning. Horray! They’re beginning to adjust to Day Light Saving after nearly two weeks. Instead of waking at their usual 6:00, they changed their allegiance to 5:00 a.m. without so much as a by your leave. [translation = permission]
I run the question through my lexicon: ‘glow bit’? What could he possibly mean? I blink but he is a blur without the bifocals. I am unable to glean any periferal information to assist me. I notice that he is po- going at a rapid rate. [translation = jumping up and down in the same spot jolly fast] This piece of information adds to the ‘blur’ affect but also tells me that he is hanging on by a thread [ translation = near a meltdown due to frustration, barely holding it together]

I need a clue, I need my brain to wake up and fast. I remind myself that this is better than 2 years ago when he was just a silent apparition. It is better than last year where he would appear and promptly explode all over the carpet. Now we have his physical presence, fully equipped with words, which he is willing to share with us, but lack the intelligence to interpret them accurately.

It’s definitely a new one, one I haven’t heard before. Why can’t he keep the utterance of new vocabulary to a more reasonable timetable? [translation = schedule] We could introduce a new campaign! Half an hour a day when he can bludgeon us with his new words, preferably when we’re awake. Thirty minutes for introductions to specific new words where he could appraise us of his progress. But no, we have to contend with these dictatorship assaults, and before daylight to boot. [translation = as well]

I trawl through the previous days events for clues, even though I know from experience that the ‘new word’ may have entered his being at any time during the last 6 months, and only now surfaced to be verbalized. Play with siblings, [translation = brother and sister] [horray he plays!] basket for of library books, visit to supermarket, [translation = grocery store] thirty minutes telly, [translation= reward for task completion {sub translation = doing chores}] Nothing stands out as ‘new’?
Not for the first time, I wish I had a twin, or a clone, someone who could be with him every second of the day so that I can keep up, because every moment I miss, leads to additional incidents of failure, where I am stumped. [translation = lost]

I debate whether or not to ask for more information? [translation = further an better particulars] But I can’t find my cheer leaders voice. Luckily it’s too dark to need my cheerleader face. If I ask a question in just the right way, he might co-operate and answer. But if I don’t understand the answer we’ll be no further forward. [translation = probably make things much worse and provoke a meltdown anyway] I determine to be brave and risk the fall out. “Can you use your ‘good describing words’ for me?”
“Yes, it is pink and it is light.” Come on now, two further pieces of information! Use them!
“Er do you mean it’s not heavy, small?”
“Yes, dat is right! You are da good one mummy!” Horray! Reciprocal exchange. [translation = a dialogue where both parties exchange information] I play for time.
“Stinky pinky huh!” I tease. [translation = a not so private joke, that makes him giggle and eases the tension.] “Let me see, what can I think of that’s pink and small?” I say out loud using my ‘thinking’ voice.’ [translation = lets him know that I’m functioning at half speed but trying]
“No, it is the small and it is the light also.”
“Er…..light? Like a torch? [translation = flashlight]”
“Yes! Good one mummy. You are da great rememberer! I am looking for the new little pink flashy torch thingy that you were buying me yesterday, so that if I was a dog and you were taking me for a walk, then I wouldn’t be squished by da cars because da driver, he would be seeing my pink blinky light, but only in da night time when it is being dark.” Couldn’t have put it better myself.

Only 2, the cat chewed the other one over night. I hope he didn’t swallow it? Well we'll find out when it gets dark.

When is a door not a door?

When it’s ajar! It wasn’t part of the original plan. The original plan was to spend my nearly two hours free of children, doing something therapeutic but pointless, such as throwing a bowl on the pottery wheel. Instead I’m doing something constructive, cleaning the refrigerator. A little unexpected admittedly but it’s always better to be productive than leisurely. I pull out the shelf tray from the fridge to wash it, the jars and bottles all glued to the Perspex.

I remember a boy coming to ask for some whipped cream for the strawberries that I was serving at a party. He asked politely, but I was surprised that someone so youthful would be brave enough to ask the hostess for such a thing, afterall there was a jug of cream available on the table. But Americans are bold like that, they teach their children to speak up for themselves. I liked it. I stopped catering for 50 plus people and grabbed a bowl and a whisk to make some whipped cream for him. The child stood watching patiently which also impressed me considerably. I remember that his large eyes grew bigger as he watched but I didn’t know why? I chucked the whisk in the sink, scooped the whipped cream into a clean bowl and passed it and a spoon to the boy. His mother arrived at that moment where she took in the scene.
“Oh you shouldn’t have gone to all that trouble, he’d have been ok. with just old regular Reddi Whip.” Not for the first time I knew that everyone around me was talking a foreign language. I ran Reddi Whip through my brain; Reddibrek, a hot breakfast cereal? Red letter? Ready for beddy already teddy? Red herring? I had no terms of reference, it was mystifying.
“You know, in a can!” she said. Can? I remembered that ‘can’ meant ‘tin,’ but that didn’t help. Did she mean evaporated or condensed milk? How foul! I was none the wiser. I accepted it, didn’t question it because I was learning a great deal about peculiar American ways, like the cake thing. Take a perfectly delectable slice of moist room temperature cake and then slap a rock of ice-cream on it. The ice-cream melts quickly and makes a soggy mess. Why would anyone do that? So what if they label it ‘a la mode,’ they’re not fooling anyone.

It’s my own fault of course, I should never have let a canister of spray cream have house room, as it such a revolting concoction of chemicals. But of course you do, don’t you, as time goes by, you learn to go with the flow and adapt. It was a mistake asking him to put the can back in the fridge, or rather on the shelf in the fridge door. I watch him hovering in front of the open fridge looking for a space tall enough, which is great because it means that he has noted the discrepancy between the two. “In the door dear,” I repeat with a tone of exasperation creeping into my voice.
“Door? Door? What door?” he bleats.
“The door, the door, in the door dear!” I get cross because I cannot think of another word for ‘door,’ something to convey dooriness that isn’t the word door. Never repeat, never repeat repeatedly. I skid over to him so that he can watch me and my arms. My arms sweep wide into a rectangle to indicate the fridge and again to mimic the door.
“Oh door!” he says with surprise, as if it has suddenly materialized before him, but there again, perhaps it just has? As he squeezes it in, it accidentally squirts a shot of foamy cream at high velocity. The others come over to investigate what made the noise and then admire the resulting splat. A set of tentative little finger tips test it out, because it might be the shaving cream variety of foam, rather than the edible kind of cream. I make a mental note to store shaving cream in the fridge for a few months so that we don’t have to repeat this exercise too often. Filthy creatures.

Three minutes later an immense amount of happiness has infected them all, but the contagious fun is over too quickly, the can has to be recycled. It’s impressive that they’ve learned how to dispense the cream themselves by depressing the button. It’s great that they find the picture of two foot of splattered cream a source of amusement, spread all over the inside of the door and it’s contents of the fridge. An educational experience for us all.
He lifted his hand, stuck out his index finger and traced ‘door,’ this from a child who can barely write his own name and considers pencils to be instruments of torture. He also shared his grin with me, as well as his eyes, as he purposefully licked his finger.
I must remember to look up that word in the thesaurus.
Door
1. a movable barrier used to open and close the entrance to a building, room, closet, or vehicle.
2. the gap that forms the entrance to a building or room
3. a building or room considered in relation to those on either side


Encarta® World English Dictionary © 1999 Microsoft Corporation. All rights reserved. Developed for Microsoft by Bloomsbury Publishing Plc.

Big help that was! “The barrier is ajar. Don’t forget to shut the gap on your way out?” Love m

Just for Jerry

To breed or not to breed?

When I first arrived in the States, my spouse was on an H1 visa. I was unemployed. Whilst we awaited the arrival of the Green Cards, I would troll along to the blood bank to donate a litre, [translation = not approximately a pint] every 57 days. One day they told me that I was no longer eligible to donate. My blood had been contaminated by eating food in the UK. I was a little miffed at the time, [translation = put out] mainly because I had another day in every 57 days with nothing constructive to do. I was also worried that the accident that I was undoubtedly about to have, would leave me wrung out, bloodless and probably dead, with no claim to a transfusion. [translation = credit denied.] Whilst America is generally a friendly place, that was my first experience of being marginalized.

These days we enjoy a different kind of exclusivity, the club for parents with autistic children. It makes decrepid old Brits struggle up unexpected learning curves and research niche areas. We are disadvantaged in many ways, as it's all very well to live in the heart of Silicon Valley but it doesn't necessarily mean that you're qualified to participate in technological advances. [e.g. blogging]

However, research and practice helps you bump into unexpected facts, such as
the research by Professor Mary Croughan on Autism in California. She found a link between infertility, being old and producing an autistic child. It should be a warning to us all, well, anyone planning a family in any case. It would have been handy if that research had been available earlier, eight years earlier, then we might have made different choices, though I doubt it.

You may feel that it's not that common to have an autistic child? But that depends upon how you define common? 1 in every 150 children doesn’t seem that common, but if you have two of them, autistic children that is, then that’s a switch of fortune, a double win. As it is, although we have four children, the two boys are autistic, but that’s probably related to the fact that it’s a condition that affects boys in far greater numbers, perhaps a 3:1 ratio, but lets not get bogged down in statistics.

Professor Croughan’s research suggests that infertility is a linking factor and that may well be so, but not for us. We arrived in this land with one perfectly ordinary female child but after a couple of years of drinking the water and breathing the air, we ended up with three more children. Careless on our part I’m sure. Were we poisoned, contaminated, had our gene pool corrupted? Perhaps. Was it mercury was it the MMR vaccinations? Perhaps it was the dodgey British gene pool? We probably won’t know that for sure for a couple of decades. I’m not that bothered myself. For me and mine it’s a ‘done deal’ as we Americans say, but for everyone else, everyone else who may be contemplating a family, it is a cautionary tale to add to the list of factors that potential parents need to consider seriously, before embarking on the real family planning.

Infertility is a blight on people’s lives, whole families are affected by the lack of productivity in that department, by a particular generation. A number of people of theoretically breeding age are discovering that Plan A of career, success, financial security and then a family, is not panning out. [translation = working] Someone has put a spanner in the works of the great plan and options are narrowing as time runs out.

Things could be a whole lot worse, as her research identifies a higher risk of a choice of five conditions, four that are not autism; mental retardation, cerebral palsy, seizures and cancer, although autism comes up as the overall winner since the risk was four times higher amongst the population studied.

This is linked with a debate about whether or not Britain should ‘consider paying women thousands of pounds to donate their eggs.’ It’s curious that US clinics sometimes pay a small fortune for such procedures whereas British women only gain 250 pounds sterling, and it’s capped. [translation = no pun intended] Now if I were looking for a career change, that might be a nice little earner. Fortunately for you that’s not likely to happen any time soon, as I think the screening process would eliminate my gene pool as a potential candidate. In any event, I'm more than a little busy with my current generation.

No Way Jose!

This phrase is beginning to annoy me. It’s o.k., on it’s own, it’s familiar, I don’t need it translated but I’ve been forced to hear it more often than the average person does in their whole life time. I don’t know when exactly this phrase was popular or hip, but the fact that I know it all, means that it probably hailed from the 70’s.



That of course is probably an exaggeration, as I have no idea how often the average person hears that phrase, indeed I don’t even know who the average person is anymore? I digress, as usual.

I still have the feeling that I am being victimized, singled out for this particular form of aural torture. It’s not the first time it’s happened, although different phrases have been used over the years, as they have gradually emerged from the non-verbal world.

I used to exist in the non-verbal world where they wouldn’t talk, but of course now that they are talking, I wish they’d all just shut up again. [translation = refrain from using repetative speech patterns] It wouldn’t be so bad if there was a little variety, but if the response to every question you ask is ‘no way Jose!’ regardless of the subject matter of the question, it does begin to wear away on the nerves after a while. [translation = grate]

I should be grateful really. At least when they yell it out across the playground it has at least the semblance of ‘normal.’ [translation = blending in] Not so with the phrase of the month before, which was ‘to infinity and beyond!’ Come to think of it, that was probably o.k. on the playground. [translation = school yard]

Not so good in the supermarket;
“Did y’have a great day in school huh?”
“To infinity and beyond!”

Or in the restaurant:
“D’you want fries with that?”
“To infinity and beyond!”

Or in Karate class:
“Stand up straight, d’you hear me?”
“To infinity and beyond.”

So do I correct them? I should probably correct them shouldn’t I? Put them right, model a better example? You’re right of course, but at this stage, I’m just celebrating that they’re talking at all. For right now, it’s more important that they voluntarily choose to communicate. I don’t want to be too hasty in the correction department, because then they might give up; ‘too difficult, I won’t bother then, I’ll just not speak at all. If what I say isn’t good enough for you mum, then rats to you, I’m back to silence.’ [translation = mime, gestures and mimicking.]

That wouldn’t be considered progress. So for the time being I just encourage them to use their words. They may be the wrong words, socially inappropriate and irrelevant words, but words are so much better than silence, so much better than a meltdown or a physical explosion of rage and frustration. It’s all relative.

Of course I’m aware that whilst I choose to categorize these phrases as attempts at communication, someone more knowledgable, would point out that more often than not, they aren’t actually talking to a person, just the ether. They’re using words but unless they’re directed towards someone, anyone, can we really call it communication? I feel you’re being a bit picky, but of course you’re absolutely right again.

Sometimes it’s merely fortuitous timing, someone asks them a question and they happen to blurt out their phrase of the week in the next few seconds, so it appears to be a response. Other times, although I am a little biased, their words do seem directed towards the questioner. They’re still the wrong words, there’s still no eye contact, but if you look carefully their bodies are orientated towards the person, because looking at someone’s eyes can been painful, especially if you’re speaking at the same time.

Not experienced that feeling? No, neither have I, but I know that it’s more common that we think. You must have met someone like that, someone who wouldn’t meet you in the eye? They seemed a bit shifty but you couldn’t really put your finger on why that was, unless they were a Brit of course.

Now the knowledgeable person would say, ‘they’re not communicating, they’re perseverating.” They’re what? Perwhaticating? Perseverating. What might that be when it’s at home? Well, in this instance, it’s when they get stuck on a little phrase, doesn’t really matter what it is, and then they repeat it, again and again.

Why would anyone do that? It’s comforting, soothing, like stroking a cat. Once you start it’s difficult to stop. Sounds a little obsessive compulsive? You’re right, it can be, but they can also be mutually exclusive.

Now hang on a second, I hear you cry; I know a child who does that, I used to do that myself when I was little, usually something off the TV that was cool and hip and demonstrated to your peers that you were with the programme. [translation = program] Nothing odd about that, all perfectly normal! Yes, you’re right again, and you probably did drive your mum batty saying it so often, but you didn’t say it to everyone, you didn’t use it all the time, you didn’t say it again and again for an hour and a half in the exact same tone, and then repeat the whole exercise with a different phrase a couple of weeks later and so on, year after year.

Now I know that you’re beginning to get a little uncomfortable with this, sounds a little too much like insanity and we don’t want to be messing about with mental diseases. But that aside, it’s not as weird as it first sounds. We all have little coping mechanisms to deal with stress, anxiety and boredom. Little things like picking your nails, twiddling your hair or removing microscopic pieces of fluff from your clothing. There’s no harm in those? Of course not, but there are other’s too, biting your nails, chewing the inside of your cheek, twiddling your fingers, tapping out rhythms on the edge of the table, little tiny things that are all much of a muchness. [translation = of no great consequence]

There are other addictions that we all know about, condemn and criticize, but it’s the smaller ones, that no-one pays much heed to, that intrigue me more. The people who can’t go anywhere without particular possessions, things that they claim they need, little props of support for the chaotic world that we exist in, like an i-pod or a cell phone, little talismen of security.

Do you feel frustrated if you can’t fit in your morning jog, ticked off if someone switches your special chair at the office, can’t start the day unless you have that particular cup of coffee made just the right way?

Don’t worry, your secret’s safe with me.

Literally

One of the many stumpers with autistic children, can be their tendency to take whatever is said or written, literally. It’s only when you have a couple of autistic children in tow that you begin to realize just how many idioms we use in every day life. For me, this has only recently presented itself as a problem [translation = challenge] due to their speech delays. Before, I was lucky to have any response to anything spoken, now I am paralyzed into unraveling any number of common phrases instantaneously.

“I’ve been on my feet all day,” becomes a bone of contention – oops there’s another one.
• “On your feet? You are on your feet? You can do hand stands instead?” Always so helpful!

• “Why don’t you just put your feet up and rest for a while?”
“Up? Up? Put feet up where? The ceiling it is too high! I am da little guy.”

• “I’ll be with you in just a minute.” O.k. there’s no point in going into the time travel aspects of children’s lives as they all suffer from that one.

• “No it’s not a back pack because I wear it on my front.” That way it doesn’t bump you and it’s easier to get access to the contents, especially if zips are a challenge.

• “Just scrub your fingernails with a brush before dinner.”
“Why it finger ‘nail?’ Why nail? It is not a nail, it is soft and thin. Why brush? Brush is for hair, brush is for teef.” It makes you try to double check everything you say before you say it, but even then, more often than not you still get it wrong.

• “How many times do I have to tell you!”
“Tell me three times. Three is my favourite number.”

• “I’m not sick and tired of his singing because I’m not, not sick, but I am tired of his singing but not sick.”

• “I going to keep my eye on you.”
“Agh! I don’t want it, keep it in your head, don’t touch me wiv it.”

• “Of course you don’t have to, just bare it in mind.”
“Bear! Bear? There is a bear in my head?”

The simplest of statements becomes a mine field; “not twelve eggs, half a dozen will do.”
“Which box is da doz? Why we no have da Baker's dozen. Baker's are my uvver favourite because 13 is having a 3 also!”

Am I complaining? Why would I complain? Three years ago I had two children who were diagnosed as non-verbal, amongst other things, now I have a couple of brain teasers to keep me on my toes. [translation = or should that be ‘to keep me guessing?]



From a long time ago

The Campaign Trail

Spouse appears, “budge up you lot.”
“Budge? Budge! What is it duh ‘budge?’”
“He means scoot up dear,” I explain.
“Why he say ‘budge’ if he is meaning ‘scoot’?”

This is the trouble with autistic kids. [translation = youthful goats?] They latch onto some irrelevancy and beat you over the head with it for the next 24 hours. [translation = indefinite period of time.]
“I don’t know, perhaps you could ask your Dad yourself?” I prompt, trying not to vaporise his father with my glare. [Do I have to translate for him too?] He doesn’t get the chance to ask, as his Dad separates them out to nestle himself onto the sofa.
“Thanksgiving soon,” he announces to an audience glued to the telly, “I wonder if they’ll eat any of it this year? How about it? Shall we practice our ‘good eating’ again? We could make an early start, say this Sunday? Tomorrow?”
The thought of ruining a perfectly good Sunday with food therapy, is not an attractive one, “well they did eat roast potatoes last year, not for Thanksgiving mind, but they did by Christmas,” [translation = the holidays] I add weakly.
“They’ll have forgotten that by now,” he comments gloomily, “it’ll be ‘new’ food again, as far as they’re concerned.”
“What? What it is? What is da ‘roast’?”
“Big chips.” [translation = fries]
“Big fries! I think I am liking dem a humungeous lot.” [translation = a great deal] The speech delay makes him difficult to understand at the best of times.
“No you don’t, you hate them,” he sister remarks unhelpfully.
“Don’t put him off already,” Spouse snips, but she’s ready with a rebound, “well if you didn’t talk foreign all the time, then we wouldn’t have all this ‘what it is?’ business, all the time,” she complains in an imperious tone. We exchange glances, foreigners and aliens in our own home.
“Perhaps it’s about time that we had a concerted campaign to switch them around again. All this ‘what it is,’ it is immensely irritating when they both do it and so often,” I sigh.
“What? What it is? What?” They’re both off in chorus.
“Can’t you shut them up they’re driving me crazy,” she squeaks, jumping off the sofa, escaping their stereo system with her hands over her ears.
“Don’t you think we’d be over doing it a bit?” he asks feebly.
“How so?”
“That would be two new campaigns at the same time! I don’t know that I’m up to it.”
“What it is? What it is? What da ‘campaign’ is meaning?” His sister stamps her foot and shouts “campaign is meaning 'fixing,' fixing you lot. Oh man! I’m doing it now too!”
“I think roast potatoes are a little optimistic. There’s not enough opportunities to reinforce them. [translation = anything that is dubbed 'new' has to be offered many, many times before it has the chance of taking hold] I think we should convert to the American way and have mashed potatoes instead. [translation = creamed] That would be so much easier as I could chuck them in the freezer, but roasties are foul if you freeze them.”
“Oh we can’t!”
“What have you got against mashed potatoes?”
“Nothing I love them, but I love roasties more.”
“Well you’ll just have to make this tiny sacrifice for the benefit of your loved ones then won’t you.” I try to moderate my tone. [translation = unsucessfully]
“But we can’t!”
“Yes we can. You’re a diabetic and there’s the cholesterol thing. [translation = most Brits are challenged in the department of 'medical terminiology] This is a much better choice for any number of different reasons.” He backs down in the face of deprivation, but rallies with, “such as?”

“Well, it’s a question of priorities. Which is more important, that they learn to eat roast potatoes that don’t exist in this country, which I have to cook twice a year, or that they learn to ask ‘what is it?’ rather than ‘what it is?’ which is driving us all completely bonkers every 2 minutes?”
“What it is? What it is da ‘bonkers?’” We ignore him, grabbing the only opportunity that we have had to converse for nearly a week.
“Ah! so it’s just that you don’t like cooking them then?”
“What it is? What it is ‘bonkers?’” We persevere.
“No, I’m just saying, that it’s not a very useful skill to acquire?”
“WHAT IT IS? WHAT IT IS DA ‘BONKERS?’” he yells at fifty decibels. Everyone ignores him as his sister takes her turn, “the campaign we really need is for you two to stop talking foreign and then they won’t have any questions any more.”

Spouse ruffles his stubble, “or we could just stop talking full stop. [translation = period] Lets just stick with the roast potato campaign. Can’t the speech therapist fix the ‘what it is’ bit?”
“They can have a go but it won’t work unless we do it at home and at school too.” [translation = generalization; what they learn to do in one setting doesn’t necessarily transfer to different locations.]
“That’s it then, just the roast potato campaign. At least that will have a fixed duration! We’d only have to do it until Boxing Day [translation = the 26th December] whereas the other might take a life time.”
“WHAT IT IS? WHAT IT IS DA ‘BONKERS?’”

Any offers?

Perfection is nothing

Autism comes in many forms. We experience two forms. This is one tiny fragment, of one relatively small, autistic child. His teacher reports of multiple meltdowns during the day. The source of his frustration? The inability to execute the perfect ‘q.’ I am in part to blame for this error, as he has been taught to write a ‘q’ with a sharp tail rather than a soft, loose monkey tail. [translation = continental error or calligraphic error?] Horror and consternation have ensued due to this mis-direction on my part. Once home we start his last outstanding piece of home work, to write out his full name, which fortunately is ‘Q’ free.
“Why der no Q? It sounds like dah Q?” It does. [translation = mac Q wen phonetically] Two hours later after negotiating with the screamer, I would willingly swap [translation = trade] the ‘q’ sound in our family name for the real thing. The paper is worn thin from his furious rubbings with the eraser. [translation = rubber, sorry about that but it’s true.] He has growled at the paper, spat on it, screwed it up in a ball, torn it to fragments and generally violently abused it. None of the letters that he has formed have reached the required standard, which means that they are punished by obliteration. I wait for a call from the Child Protective services as everyone else in a 50 mile radius, is also aurally abused, as he howls in protest.
I suspect that he must have a permanent bruise on the back of his skull from hurling himself backwards in the chair, same spot every time, about 15 times in as many minutes.

Now this is a leap of faith I know, but believe me when I tell you that I haven’t inflicted 20 'time outs' on him, honestly I haven’t. [translation = curious American term referring to the practice of isolating child for as many minutes as they have years] Instead I have taken a flailing 5 year old to his room to lie on his bed, where he can calm down and consider the lump on the back of his head, compare the pain he experienced, by comparison to the agony of a wiggly down-stroke on one letter. Thus far, the message has not penetrated, he has not connected the dots, or if you prefer, has failed to accept ‘less than perfect.’ For him ‘less than perfect’ equates to failure. Since failure is unacceptable, we have reached an impasse.

I have genuinely praised his efforts, real sincerity. It is a lovely capital Q. [translation = upper case] Rarely have I seen finer. The lower case ‘q’ is also delightful. I am not concerned with it’s tail, it is more than good enough for someone of his fragile years, but will he accept that? I think of the library book that I have read to him daily so that now it is overdue and we’ll have a whopping great fine. [ref 1]

I push my sketch to one side on the table but it catches his eye.
“What it is?”
“Oh it’s just a rough design for the bowl I’m making.”
“I can see it?”
“Oh course.” [translation = sure]
“Dat is dah most beautiful one I am ever seeing! You are de artist!”
“No, it’s just a rough sketch, so I know where to put what.” I watch his eyes as his index finger traces the lines on the paper, eyes like saucers, as any youngster is, when faced with evidence of older children’s work. I grab it from under his arm, scream at it, rip it from the book, screw it up in a ball and hurl it across the room, “I hate it, it’s stupid, it’s no good!” He looks at me open mouthed.
Well it was just too good an opportunity to miss really, and cheap at the price. Thank you SJPL.org.
[Ref 1] Ish by Peter H Reynolds – for all the little perfectionists out there.

You Choose [translation = decisions, decisions, the whole time decisions]

One of the many oddities of sharing your life with a couple of autistic children is that they force you re-evaluate. One of my boys has always experienced an inability to make a decision or a choice. It doesn’t matter what he’s supposed to be choosing between, that is of no importance, it’s just the choosing bit. A good example would be two things that are identical and two things that he likes, such as a commercially produced cookie. [translation = shop bought biscuit] What is the dilemma, what is the problem in choosing one over another? I have no idea. You would think the problem would be easier if one choice was less preferred, say a cookie and a broccoli floret, but it isn’t any easier, he is still paralysed by indecision.
These days I am shameless. I quiz experts, harangue my pals, [translation = friends] strike up conversations with complete strangers. [translation = American] I trawl for answers. Everyone is helpful, but none of them, the answers, that is to say quite fit the niche. [translation = seem right]

Which would you prefer, go to the toy shop [translation = store] or a trip to the theme park? Especially difficult for me, since I am "allergic to shopping." No, still impossible to choose. This shirt that you like, or this shirt that you refuse to wear? No, still can’t choose. I can see that you doubt my veracity and even if you believe me, what difference does it make, why does it matter? [translation = why am I getting my knickers in a twist about it] Well, it wouldn’t be so bad if there weren’t so many choices quite so often, but if, every time you are faced with a choice your response is to collapse to the floor in a screaming meltdown, then perhaps you might be a little more sympathetic? Or maybe not. Ignore sympathy, consider the passage of seconds and minutes, contemplate efficiency or time management? Oh please! Stop whinging woman! [translation = moaning] But they are interfering with my proficiency statistics as I have to factor in anywhere between 20 minutes to an hour, for every question, to permit many meltdowns. It’s just not good enough. I’m too busy for all this autism stuff, my organized life is transformed into chaos due to a dilemma over socks. I can’t be doing with it! [translation = intolerant, anal parent] I wouldn't mind quite so much if it were not for the fact that, apart from anything else, "shopping is my number one bug bear."

He has been making progress though, in tiny, miniscule, almost imperceptible steps. The speech delay only complicates the issue. It is because of this that I watch him in the process of choosing, watching quietly and unobtrusively, because I don’t want to jinx his chances;
“I need to sort dis out! [recognizes there is a problem] What I do? [seeks solution to problem] O.k. Right! I know. Eenie, Meanie, Minie moe, catch a tigger by it’s toe, if he hollers let him go, eenie, meanie, minie moe. My muvver says…..wait a second!” As he says the words, his finger doesn’t keep in time with the syllable count, but it doesn’t matter because he doesn’t like the outcome in any case. I have always found this peculiarly fascinating. I could intervene, help him hand over hand, because that definitely helps, the kinesthetic practice, [translation = body doing it means that’s the body is learning it by going through the motions] but I don’t. He counts but the finger doesn’t keep up, although it keeps moving. One blink later the finger is ahead of the count, it randomly speeds up, then lags behind. No-one can count accurately like this, it is not helpful. [translation = a vindictive metranome] His speech is fluid. If his speech was incoherent his finger would be in time and he would have an accurate count. This is why he can’t catch a ball, or more accurately, can’t catch a ball and speak at the same time. It is such a bizarre thing to observe, so tiny yet completely disabling at the same time.

It occurs to me that the majority of the population, especially young people in the general population, clearly have as many difficulties choosing between competing options, just as he does. I watch him re-examine the choice board, as his index finger floats from the juice icon to the cookie icon, which are both in the category of ‘treats’ and therefore he can only have one of them. I think of the other childhood counting game that I used to utilize such as ‘one potato, two potato,’ there is the equivalent in every country. [translation = universal.] I try and remember the feeling whilst I was playing them? Depending upon whether I was one of the group being chosen from, or whether I was trying to make a choice myself, what were the thought processes? It was basically surrendering yourself to fate, giving responsibility to something else. It was only when you neared the close, and the light dawned about the outcome, that you could choose to accept the inevitable or cheat. If you choose to cheat this means you know that you do in fact, have a preference after all, it suddenly becomes clear, even if, just until that moment you weren’t aware of it. Whilst his difficulties in choosing have always been catastrophic in the past, this might just have been an extreme form of what everyone else is experiencing too.

I watch him cheat. Horray!

5 a day [translation = a breather]

Occupational therapy is a profession for professionals. Mere amateurs should steer well clear. [translation = not dabble] I leave my daughter in the car in the garage and herd the boys inside. She remains for a few minutes, unhindered and free, so that she can regroup and recalibrate her hearing system after a twenty minute drive, with continuous screaming down the freeway. [translation = stereo] [Note to self – contact architect re sound proofing the garage] I hope that the Child Protective Services don’t honour us with an unexpected visit.

Whilst she has a little breather, I debate whether to commence homework straight away, before they become engrossed, [translation = locked into a preferred activity] or whether to let them cool off too? Why are these kinds of children not fitted with a meter, like a thermometer so that you can accurately read them? I glance at my untouched list of ‘things to do.’


I park one on the trampolene and ask him if he can beat his record, whilst I snap the timer on in front of his eyes. [translation = bad choice as this reinforces his ‘I am the winner’ mentality] The other one is deposited on the wedge, a six foot square affair that he can burrow into. [translation = a bit like having a massage]
I remember hearing on the radio that most children are over-scheduled [translation = busy] which makes them over tired and stressed, amongst other things. The same is true for us but not everyone is equipped to acknowledge or deal with the situation in the same manner. In that way we are fortunate. We have the gear [translation = equipment] and we make the time, because having these kind of children means that you don’t have a choice in the matter. You give them what their bodies need or prepare to take cover. [translation = duck]


One of the brackets on my braces snaps to punish me for eating raw almonds. I can feel the tooth beginning to take flight, released. It is quite disconcerting, especially when it makes me realize that this probably means I am closet bondage freak.
“Can you deliver me to the bathroom please?” he asks puffily, but with perfect fluidity, as he has reached his goal of 101 bounces in under a minute. I lead him by the hand to the less preferred bathroom, the one with the quarry tiles that offend his feet, such that he needs moral support to attempt such a feat. I lean against the sink awaiting his performance, as he looks around the room for visual entertainment. I say nothing.
“You know what?” he squeaks.
“What dear?”
“I fink dat maybe I am not needing infinity bounces today.”
“Really! What made you think you needed infinity bounces?”
“Well, cos my body woz all, woz all……I don know.” He peters out, frustrated. I try and think of a suitable word that describes the frenetic energy trapped inside him. Something to help him verbalise and acknowledge what it is?
“Do you mean,…..’wriggles’ or ‘itchy,’ perhaps?” Not one of my better attempts admittedly, but I’m tired too, and my nerves are still jangling from the journey. I should have stolen a few bounces myself.
“So the main thing is, that you don’t need infinity now, you feel better?”
“Yes.”
“I can see that you look like a lovely green 1.” "[translation = Incredible 5 point scale]"
His betterness is demonstrated as he finishes up, sequences through the steps to restore clinical hygiene standards and replaces the hand towel. [translation = stuffs it into the ring. Don’t criticize this is ‘task completion.’] As the toilet flushes, he pounds his forehead into my stomach covering his ears against the rush of water and adds, “I fink you are right, I fink it is the wriggleitch.”
Oh dear, that’s not good. Why couldn’t I have thought of something a little more appropriate? Another piece of terminology that will require translation.

Disgusted of Tumbridge Wells [translation = pissed in San Jose]

Oh dear me no! Well this is frightfully irritating. I don’t like this one at all. I’ll swap this for the old one. [translation = trade] This is not an obsession that I’m happy with at all, as it’s so impractical, not to say intolerable. [translation = for both of us] Can’t he have a practical obsession for a change? Who needs to wash their mouth before they eat or drink? [translation = the inside of it, the oral cavity itself] It’s not as if we don’t already have enough problems with eating and drinking. [translation = challenges] What’s this all about then? Where did this one spring from? Why didn’t I nip it in the bud? [translation = anticipate and ward off] Why isn’t water of just the right temperature more freely available? [translation = tepid] Why isn’t there a water fountain at just the right height at 50 yard intervals in America? [translation = not metres in this instance] What a dreadful country? [Note to self = contact City Planning department with helpful suggestion. N.B. remember to be polite not obsequious]



Why aren’t their taps in every room of the house? [translation = faucets] What idiot architect do I need to track down and pummel? [translation = berate] Why don’t I have sufficient supplies of flannels [translation – wash cloths] for this exercise? Why are so many of them faulty? [translation = sub standard with little strings and threadbare bits] Why is the laundry maid so negligent? [Note to self = research American term for ‘Water Board’?] Why isn’t the sink the right height for him to reach in an emergency washing session? The poor child will have knees like aubergines at this rate. [translation = eggplants] Why can’t I see this supposed ‘fur’ in his mouth? Why don’t I have x-ray vision instead of bifocals? Why am I so badly designed?

There again, although the meltdowns are all level 10 in volume, he’s not static. [translation = horizontal] He is proactive. [translation = trying to fix the problem himself] The flannels have a handy way of muffling the noise a bit. At least I have over 50 flannels already, which I should be able to recycle, if I get my act together. [translation = fire the laundry maid] The flannel and water, help to desensitize his mouth, which makes eating easier for him, when he eventually gets around to that evolution. [translation = starvation is imminent] It’s a positive step in the direction of oral hygiene, which is especially beneficial for someone with a smattering of British genes.

He has to use his hands. He has to use both of his hands. His hands have to co-operate with each other. They have to get wet. Dribbles sometimes run down his arms, almost reaching his body. I wouldn’t go as far as to say he’s tolerating it, but he’s getting there, and at current rates of speed and frequency, he’s going to get there jolly fast. [translation = quickly]


His hands have to use the taps, manipulate them to get the water in advance of receiving the reward. [translation = relief] That’s a challenge for someone with poor fine motor skills and planning. [translation = dodgy fingers and difficulty with seeing ahead] That involves waiting, [translation = delayed gratification] a condition that many struggle with.



Note close proximity of delicate digits to averse texture!
Thank goodness for gravity.

I suspect another bravery award is in the offing? [translation = appropriate]

ABA

[From a couple of years back]
My incoherent speech delayed youngest son howls at me. His words, if they are words, are so distorted that I can’t make out their meaning? He’s at full volume, [translation = level 10, where level 1 would constitute a whisper] due to inferior milk temperatures. I make a mental note to summarily dismiss the cook. ABA save me! [translation = not the American Bar Association, Bankers, Basketball, Booksellers nor Birding.]

I hear the dulcet Irish tones of ABA guru [translation = Applied Behavioral Analysis chappie ] float over me; “and what is the functionality of the particular behavior exhibited?” Haven’t the foggiest notion [translation = clue] right now, unless it’s to drive me completely batty, in which case, he is exceeding expectations. “We need to figure out the function of the behavior. Is it for attention or a tangible outcome, is he avoiding or escaping something, has this become a ritual (self stim behavior)?” This kind of language to the parent of the newly diagnosed!

Probably, all of the above at this stage, but who knows? Certainly not me, especially when the noise level is high enough to make the few brain cells I have left fuse together. What is the cure for autism? All I can think of is ear plugs or protectors, but I think his need is as great as mine. When he was born in the hospital, the nurse said he was the loudest she’d ever heard. I thought she was joking. They should never have let me leave the maternity ward without ear muffs at the very least. Expelled and ejected from the hospital in a wheel chair, swaddled baby, ear muffs and 96 degree heat.



“I am having a bad day!” he manages to bellow. Horray! Coherent speech. You and me both, matey. [translation = guy] It is at moments like this i.e. frequently, that I want a time machine to whiz me back a couple of decades so that I can change careers to something more useful. There again, I’ve already been fired from my post as cook.
I reach over for his 5 point scale, [see Ref 1] and rub his back with my other hand until I can persuade him to glance at me. He obliges me with a quick flit of the pupils to see it in my hand. I point to the five, the red square which indicates to him that I know that he’s in the middle of an explosion. This is to help him recognize that what he is currently experiencing, is a five, that this is what it feels like to be exploding. [translation = bio feedback something or other – see Ref 1 Psychobabble]

I use no words, and neither does he. This is more effective. Speech can be a dreadful impediment to effective communication. After a few more minutes, the noise dissipates as I rub his back. I point to the four, orange, as he gradually comes down the scale. As he sits up from the floor the noise actually stops. He points to the three, yellow. I encourage him to take deep tummy breaths which he co-operates with. [translation = stomach breathing for alternative types] I flip my finger between two and three, as I’m not sure where he is? He helps me by pointing to the 2, blue. I tell him that we’re going to clean him up now, and fetch a tepid wet flannel, [translation = wash cloth] to wipe his face. We avoid the tricky areas of nose blowing, as well as eye dabbing, to ensure that we don’t inadvertently provoke an additional meltdown. I have learned that anything that might loosely be described as a ‘cavity’ on this child, is a ‘no go’ area. But that’s because Brits are ‘medically challenged.’

We spend an additional seven minutes tinkering with the milk temperature, if not calmly, at least without the screams. Eventually, I get it right. He sucks his hot [translation = 1 minute and 7 seconds in the microwave] chocolate milk through a straw. His delicate little mouth shuns the texture of the lip of a cup. It also has the fringe benefit of free therapy, by practicing his lip closure. His fingers avoid contact with the cup and the straw. Hands free beverage consumption. Now there’s a skill I didn’t know existed? One tentative and brave digit, reaches out to brush the 1, green. Hallelujah!



Ref 1 I am unsure if it’s acceptable to mention the ‘Incredible Five Point Scale’ or whether that constitutes ‘flagrant advertising’ resulting in carnage to the blogging system? [translation = please advise?]
Ref 2 Psychobabble – phrases and terminology used effortlessly and accurately by all American persons from birth onwards, but the rest of the world finds
A] incomprehensible
B] laughable
C] tunes out
D] any / all / none of the above

I apologise for any stray 'u's that I may have missed. Ignore the zeds.

Speak English why dontcha!

I check my google alerts again. Nothing. Nothing since midnight. Now it is 5:05 a.m. It appears that no-one is autistic today but maybe someone is a little obsessive compulsive? [translation = hamster in wheel] I review the previous evenings errors, so that I may learn from my mistakes and continue up the learning curve. [translation – very steep ladder with rickety rungs and far too many splinters]

I had the brilliant idea of lecturing them whilst they were held captive in the car. Dark, not too many distractions. No choice but to concentrate on my message. I had carefully planned my message, so as to ensure that there were no unexpected pitfalls. Pitfalls are many and various, but there are a few key words that should be avoided, as they provoke angst and meltdowns; death / dying / old / a broad category of food items / the wasteland of references to time. I avoid these traps and am wary of other potential hazards that will derail the message.

To make the message more palatable, [translation = user friendly] I had the brilliant idea of faking an American accent. They are surrounded by American accents. Maybe they are more familiar and easy on the ear? I incorporate common colloquial terms that their contemporaries and peer groups utilize. Words like cool, hey, gotten .i.e. foreign words.

Brilliance is my word of the day. I am so supremely fortunate to be bedazzled with brilliant ideas. I ban doubts, doubts raised by Senior daughter; ‘just don’t mum! You’re absolutely cronic at American accents.’ [translation = inferior] I am surrounded by critics. I’ve been here 11 years now, I blend in like a chameleon. I am indistinguishable from my own peer group, depending upon which peer group you select. Which peer group should I choose? Would anyone let me join? [see Ref]


“So! I was thinkin!” I start in my best cheerleader mode, whilst whizzing up the motorway. [translation = freeway]
“Howsabout we have a new rule?” Never ask a question, always use statements. I glance into the rear view mirror. The occupants have covered their ears with their hands, all of them, six ears each covered by one hand, their own ones. I move to full volume because their ears are not hermetically sealed and I will reach their Eustachian tubes at all costs.

“Why are you talking funny?” she asks, unofficial representative of the audience. I ignore the undemocratically appointed questioner.
“We have three new words that are banned. No more ‘twerp,’ ‘twit,’ or ‘turnip head.’” I notice my American accent has slipped, only applied to alternate words. I should have practiced this aloud, not just in my head.
"Dey are da nu English words. We cant talk English no more?"
"Correct. No English, just American."
"But you are still speaking da English, but...da funny weird English now."
“Whadaya say, is it a deal!” No questions! Only statements! How many times do I need to remind me of this? Silence. I wait. The message is delivered, but received unfavorably by the audience. They take in turn to comment;
“You can’t expect us to listen if you use that voice, you sound like a right twit.”
“She’s right. You are da twerp voice.”
“No, she not twerp, she is a turnip head.” The car rocks with violent laughter, joint. I look in the rear view mirror to confirm ‘jointness.’ I am an outcast in my own home. [translation = vehicle]

Ref - "I sent the club a wire stating, PLEASE ACCEPT MY RESIGNATION. I DON'T WANT TO BELONG TO ANY CLUB THAT WILL ACCEPT ME AS A MEMBER."

* Groucho and Me (his 1959 book), cited by Groucho many times

Faulty cataloging

Sunday night I commence the bathing of the smaller members of the family. I take senior son first because even though he is clean, he is also cold. We spend 25 minutes deep in reciprocal conversation, [translation = two people exchange comments] as his whole body bounces rhythmically from top end to tap end, rigid as a torpedo but coherent. [translation = faucet] All his new phrases come tumbling out with perfect intonation, which means that I’ve judged the temperature just right, “Ah that hits the spot, I’m in the zone now, I can handle it, dis is heaven,” he croons.
His sister is next requiring serious amounts of hair taming. His bath, now tepid, does not meet her basic requirements. Lashings of hot water bring the temperature up to acceptable levels. As I pick up discarded clothes and soggy towels, she empties the bottle of conditioner into the water, as if it has magical properties.
Lastly we have junior, filthy and smelly. He examines the milky water with an expression of doubt and trepidation. “I cook, I cook!” he remarks noting the steam. A toe advances, “I am burning!” he squeaks as he beats a hasty retreat, skidding through the puddles. I allow him to control the flow of cold water, whilst I churn up the contents until he feels he is able to tolerate his first foot in water up to the ankle. It takes a while to ease him into the state of wetness, but once there, he is happy to splosh around in the water up to his neck.

The last drop of his baby shampoo has vanished. I debate. He is nearly six, there is no reason why he shouldn’t be able to tolerate his siblings ‘whatever is on offer at the supermarket’ choice of shampoo. I spend ten minutes attempting to wet his hair without him noticing. Every ‘ouch I am melting’ tells me that I have not succeeded. I cannot fathom why he should worry about melting when he is already wet from chin to toe? I hear the garage door open as spouse departs to refill the car with petrol [translation = gas] before the Monday morning run to school. I need to speed up, to get back to the two unsupervised ones.

I wait until he is absorbed with emptying the bath by a wave making extravaganza and then smear his head with shampoo. I grip his slithery screaming form, but he’s to distracted by the competing need to keep the waves at the same height and in the same circuit of velocity. One cupful spurts out of one corner onto the floor, one bucketful off the deep end, at twenty second intervals.
“Ahg! I smell dying! I smell sick! My nose it is dying from the sick smell.”
“It’s not sick dear. I know! Lets read the label.” I hold out the bottle in front of him as the waves subside.
“’A burst of Juicy Grape.’ Grape! Grape? You put fruit on my head, oh no, now I am really dying, don’t eat me.” He scrambles to escape from the bath, but he is easy to corral, unable to gain a purchase on anything in his slithery state.
“Why you put fruit on me? You wanna eat my hair?”
“No, don’t be so silly, it just smells of fruit, that’s all.”
“But you like it. You like hairy fruit.”
“No I….”
“Liar! Liar! You are loving the hairy fruit. Hairy fruit is your favourite!”
“Well….anyway grapes aren’t hairy.”
“Why it fruit? Fruit is for eating not hairing, er, washing, er shampooing.”
“But you don’t eat fruit anyway! So what does it matter what you do with it?” He pauses to reflect these words of wisdom and I pause for breath, hoping my chain of deceit can be repaired by careful calculations.
“But mummy, you are forgetting, I do eat fruit now, and I am eating my grapes too.”
“O.k. howabouts I only put the fruit that you don’t yet eat, on your hair?” He doesn’t answer but sits quietly contemplating his options, whilst I rinse him. I’m merely grateful for the lack of movement. I carry him back to the family room rigid as a board, his damp head rests on my shoulder. Both hands clamped to his hair line, his eyes ever way. They never leave my mouth, just in case I’m tempted by a quick nibble. Spouse has returned and is busy brushing the bird’s nest on his daughter’s head. He sees me park junior back onto his feet in a vertical position, elbows out, hands still in protective mode, “I thought you weren’t supposed to be carrying him any more?” I retaliate, “did you wash that brush first dear?” I ask, provocative but truthful.
“Brush. Brush? Hair brush? Why would I want to wash a hair brush?” he queries between squeaks and yelps from his daughter.
“Because if their hair is clean, then it needs a clean brush.”
“Oh. Well never mind this once. By the way, I filled up the car with gas [translation = petrol] whilst you were bathing them all.”
“Great, thanks. I hate driving around with a thimbleful.”
“There was one of those bloody great tanks on the forecourt too. Dread to think what his bill was!” [translation = expenditure]
“They’re ridiculous those cars, shouldn’t really even call them cars at all. What kind of show-off prances around in a Hummel? Pretentious git!” [translation = unflattering comment]
“It’s ‘Hummer.’”
“Pardon?”
“The car. The big tank! It’s not a ‘Hummel’ but a ‘Hummer.’ You need to practice distinguishing between large macho lumps of metal and small kitsch German figurines.”

Incident of Parental Error

I commune with one of my speech delayed sons. He is nearly seven and a half, the big one. His autism complicates his speech delay. He is motivated to speak to me because, like most children, he wants something from me. I already know that he wants to find the case for his computer disc, to keep it safe, to stop it from being damaged. He has learned that ‘damage’ equates to ‘no more play.’ Currently he applies this care to his own belongings, but in time he will apply it to other people’s property, [translation = generalize] which is good for you too.

“What does it look like dear?” I wait for him to process my words and debate whether it’s really worth his effort. I wait, because if I repeat it too soon, the new words will bump into the old words and produce a jumble. I wait. If I rephrase, mistakenly thinking that he’s misunderstood, then the two phrases will tangle around each other, slot together in a knot to hide their meaning. I wait. Why should he speak when he can get want he wants by mimicking, gestures and mime?

I know what he wants. He knows that I know. Why don’t I just give it to him? That’s what a kindly parent should do. Because when I’m in my coffin, I want him to be able to communicate with other people, preferably using words. I wait as he processes and debates simultaneously, because although he may not appear to be multi tasking, he is. I tip the balance in my favour, and prompt him at what I hope is the right time, because I steal information from speech pathologists. “Use your good describing words.” I wait. Our eyes meet, he knows I mean business. I wait. I wait a bit more. I prompt, “is it big or little?”
“It is like dis,” he holds up his hands to illustrate the shape and size of the sought after item.
“Fat or thin?” A choice of options makes it easier for him. His vocabulary is good, [translation = age appropriate] he just has difficulty finding the words, as he has a faulty filing system.
“Fin. It is fin, fin, fin.” How we love categories.
“What colour is it?”
“Er it has no colour, no colour, no colour.” Always in threes, a little echoing loop.
“Is it see through?”
“See fru? What it is, ‘see fru?’” That's not a new word, where can it be hiding in his lexicon?
“Um, I can’t think of another word for transparent!”
“Oh! Why din you say dat den, I know transparent! Indeed, why didn’t I?
“No, no, no, it not ‘trans pah rnt’ it is really ‘trans PAR ENT!” His discriminatory auditory power, enunciation and diction flaw me. I predict a future career as an elocution teacher.
“No English speaking! Try, try, try again! We are in da America you know!”
As if I’m allowed to forget.

One Man's Work

One of the kittens is nose to nose with me, trying to catch the cloth as I scrub in a circular motion the length of the hall. [translation = corridor] He wants to play. I am not feeling playful. The burden of cat litter is akin to nappies. [translation = diapers] It is the kind of task that cannot be postponed. I am feeling hot and bothered. It’s not that I’m jealous of course, it’s just that he talks more to the cat that he does to me. He speaks long, fluid, mellifluous sentences, with perfect intonation and emotion to that superfluous, work generating fur ball. I have accepted my relegation with grace.

Meanwhile, we have been spending an inordinate amount of time on the latest campaign, trying to get Senior son to lighten up. [translation = not take things too seriously] Many autistic children have no sense of humour [translation = humor] or if they do, it is so obscure or literal, that it fails to have any impact on their audience, assuming they have an identifiable audience. Sometimes it may take a while to determine who that audience is? In our household, more often than not, it is the cats, two of them, who are the audience. The ‘lighten up campaign,’ is not a voluntary but one provoked by junior’s current craze of telling jokes. This is how most of our campaigns begin.

We swim along contentedly in the flotsam until we hurtle into some debris that someone has dredged up. Suddenly we are faced with a meltdown provoking obstacle that needs swift action. In this instance, ‘the joker’ has come to our household with menaces. The unfunny ones are fair enough, he’s not six yet afterall, but he also ventures into the realm of ‘funny’ taunts, such as ‘you are a girl!’ Whilst such behaviour should be discouraged, it is also another one of those burdensome learning opportunities which parents of special needs children need to exploit; ‘don’t take it so seriously, he’s only kidding.’ [translation = winding you up.] ‘He’s only having you on.’ [translation = pulling your leg] The message we’re trying to convey, is that a meltdown is not an appropriate response, or at least, it is too much of a response. A more moderate and smaller response, if any, will suffice. Of course the use of such terms, from either continent, only serves to provoke further angst; “Why you pull my leg off?”

Meanwhile, I am removing 30 feet of kitty litter [translation = grey cement] paw prints from the length of my house. Tedious, tiring and boring. I contemplate as I scrub. I am impressed that he gets the gist of it. When his little brother says ‘you are a door!’ to the universal tune of ‘na na na na na,’ he knows that it isn’t a compliment. But last time I checked, being compared to a door, doesn’t really rate in the great archives of personal insults. He should be able to brush it off or ignore it, but as yet, he is unable. If you exercise your freedom of speech, as every good American should, especially if you are considered non-verbal, and your attempts are rewarded with a spectacular meltdown by your older brother, this must be a most rewarding experience. A rewarding experience is self reinforcing, which means that you will do it more.

I glower at the floorboards. Every revolution of the cloth on the floor provokes an attack from my furry friend with the uncontrollable feet. I’m tempted to squirt him with hard wood floor cleaner, not that I habour any ill-will. My son appears by my side, an angelic avenger of felines, defender and superhero. He hovers as I scrub the last three foot of floor, so that I can get back to my original cleaning plan, as opposed to this additional diversion.

“Whattaya doin?” I sit back so that I can check whether he’s talking to me or the cat, because I’ve been caught out far too often with that one. In one hand I have a floor cloth, in the other hand I have a bottle of floor cleaner. Until just now I was on all fours scrubbing. My brow glistens in the 80 degree heat, my glasses have slithered down my nose due to the fact that I have been in a horizontal position for the last 20 minutes. How many more visual clues does this child need?

“You’re havin fun huh?” he questions. Fun! Fun? Has his sarcastic gene finally surfaced? His expression is doleful and dejected. I open my mouth to say something in reply, but I’m having trouble retrieving anything coherent as a prompt. His eyes flick between me and the floor cloth and the cat to ask “can I play too?”

Touche

You may care to read 'phobias' prior to this article.


My daughter is engaged in the bathroom [translation = sitting on the throne] with one foot operating the lever on the pedal bin as she chants “bin, trash, garbage, rubbish,” in time to the clanking of the lid as it crashes against the pedestal. I sit at the table with the boys. Junior son’s current breakfast consists of 3 grapes, each color, a raspberry, a strawberry, a blackberry, a serious challenge, a few blue berries, the blandest and most innocuous fruit ever to grace the planet, a cube of pineapple and half a banana. This means that breakfast is generally a very LOUD affair. This is of course perfect timing, now that we're reaching the end of the soft fruit season. He'll have forgotten all about them, that he has nearly conquered them. By next year they'll be 'new food' again. Ah well. The fruit is a precursor, nay an aperitif, to more preferred food, 44 minutes of fruit, one minute of cereal. 44 minutes to eat a quarter cup of fruit, one minute to eat a cup of cereal, but life’s a trade off. Her chant continues in the bathroom, “bin [clank], trash [clank], garbage [clank], rubbish [clank].” I consider removing the label from the bin, marked with the same words to assist those who have difficulty identifying everyday household objects without such clues.

I run a quick inventory of the odd things in my house that are labeled, just a few of them, like the 4 foot toy chest that has a little yellow label on it saying ‘trunk’ or the 6 foot fridge labeled ‘fridge’ or more confusingly, the door labeled ‘sink,’ which is at eye line height, so that when he walks into the door in the morning, he’ll be reminded that he’s really heading for the sink. It’s like some deep surreal mystery, where I inhabit the same planet where I am the alien.

We reach the hurdle of the latest new fruits. He screams as is his wont and tries to escape from the cage of his carver chair.
“It’s hairy!” he yeowls.
“What is?”
“The fruit!”
I examine his platter looking for a rogue bloom of mould that I may have missed in haste. Nothing. Pristine fruit, the peak of freshness, a delicious, juicy, tempting array of the best the supermarket has to offer.
“It’s not dear, it’s perfect.” His sister appears by my side to comment, “he’s never gonna eat it ya know.” I am uncertain whether she has mislaid her American positive attitude or whether this is my reality check?
“Rubbish, of course he will, he’s eaten one every day for ten days now.”
“What cha mean ‘rubbish,’” she enquires, head to one side. I blink, checking continents.
“Oh, ‘rubbish’ can mean ‘nonsense’ or ‘don’t be so silly,’ sort of thing, too.”
“Hairy, hairy, hairy! ‘Hairy’ cannot be food,” he screams in case I didn’t manage to hear him properly the first time.
“He’s not gonna eat it,” comes the voice of doom. I look again in case the hygiene consultant shed a follicle inadvertently during food preparation, as such mistakes do occur in non commercial kitchens such as mine. Nothing.
“It’s fine dear, no hairs.” The other one starts up, breaking his monastic silence, “I, I, I, um, I don like fruit, it is yucky for me, but I’m gonna try, I’m gonna try and eat it anyways,” he says stuffing a blueberry into tight lips.
“You need to open your mouth first dear.”
“I can’t eat hairy! It is bad to eat hairy.”
“There is no hair dear,” I say firmly with my eyes very close to his eyes. He growls with exasperation at my stupidity.

I concede the point that some fruit is in fact hairy, a whole category of hairy fruit such as kiwi, or peaches, if you’re being really picky, but his breakfast is devoid of the hairy varieties. He gestures with his index finger towards the offender. I follow as he identifies the raspberry, stabbing the nearby air space with teeth bared and a crumpled nose, as the stench of raspberry is clearly overpowering. Our faces move in closer to examine the culprit. “See!” he accuses, but I don’t. He hurls himself back in the chair and clunks his skull of the wood, ‘mothers! Who’d have them!’

“Your eyes are bad, your eyes are stupid, why you have stupid bad eyes that don’t work proper?” A well reasoned argument, one that I haven’t recently considered but always subject to review. I try harder. I pick up the raspberry to line it up with the bifocals at 6:52 in the morning, and do you know what, he’s right, there are tiny little hairs on a raspberry, minute ones. This is a valuable new piece of information for a middle aged person to acquire. I wonder why it is, that whilst for most people, advancing years result in greater wisdom but that other less fortunate persons, are forced to face chasms of ignorance? I also wonder how best to proceed, now that I have been proved wrong both categorically and category wise? His face is set, arms folded across his chest in a gesture of defiance. I replace the fork on the side of the platter as a droplet of juice forms on the pierced raspberry. I debate how to manage my defeat, which apparently is discernible from my facial expression, as he reaches a gentle hand across to my shoulder, “I am sorry your eyes are old rubbish.”

Prevaricate

I used to consider myself an honest person, don’t we all? I’m not averse to telling the odd white lie here and there, but definitely avoid the big whoppers. [translation = mortal, not burgers]

With my first generation of children a couple of decades ago, I found that my primary position on ‘truth’ was compromised. I adopted a new position; ‘sitting on the fence.’ Then, a youthful and ignorant parent, I worked on the sound theory, that if I offered two opposing options, that my child would have to work it out their own way. Of course I stacked the odds in my favor on each and every occasion; ‘some people think it’s o.k. to eat animals and earn their living that way, other people prefer to think of animals as friends, now would you like Whiskers fried or roasted for Sunday lunch?’ Now that’s what I call value free parenting.

These days, when the audience is more literal and is beginning to acquire a sense of humor, I find that my fence is getting a bit rickety, but that happens with age. With this generation’s black and white world, my fence is being shaken. I am in peril of a tumble.

“I am special?” he asks before the sun has risen. I blink behind my bifocals. I am not a morning person. When he first wakes up, he has more words available to him than later in the day, as he uses them all up. He seems to be operating on a quota system.
“Of course, every child is special. Indeed every person is special now I come to think of it.” I need my brain to wake up and connect with my mouth.
“No, no, no. Me. Me. Me. Am I the special one?” Oh dear! Who has being saying what to him? Don’t mess it up! Encourage and positively reinforce every utterance. If only I could get him to start at the beginning, to fill me in on all the prior thoughts leading up to this question.
“Who told you that you were special dear?”
“No, no, no. Not ‘deer,’ ‘boy!’ Am I a special boy?” Oh dear! I fell right into that one. Wake up! Starting firing on all cylinders! Have my neurons abandoned me?
“Who told you that you were a special boy?” Why am I a night owl? [translation = barmy old bat]
“I don know. I mean, I mean, I mean, I cant remember who is saying dat.” I think. Hurry, hurry, before he loses interest. I need to metamorphose into an early bird. [translation = leopards and spots] I think hard. Why didn’t I train to be a speech pathologist when I was 18? Can I swap [translation = trade] my paper qualifications in ‘uselessness’ for a practical skill set?

I have no back-ground information, no pointers or clues. I don’t want to provoke a meltdown by trying to extract chapter and verse from him, when he just wants an answer. I think of an answer. Not an answer to him, but an answer for him to use.
“The next time someone says that to you, can you try and do your ‘good answering’ for me?”
“Er, maybe.” Perfect! Never agree to anything initially, without due consideration of any and all consequences. A sound response that will stand him in good stead, both now and in the future.
“Can you try and look at the person, their face, shoulder perhaps, and use your kind voice to say, “And you’re special too!”

Well it’s not a lie. [translation = ain’t that the truth]


prevaricate
verb [I] FORMAL
to avoid telling the truth or saying exactly what you think.

Helpful Interpreter sabotages credibility

One of my chaps suffers from tactile defensiveness. [translation = doesn’t like the way things feel for current purposes] Because of this, his Birthday Suit is his favorite. [translation = prefers to live life without the trouble of laundry] He is a very lucky boy, because several people have worn his clothes before he does. This means that they are soft. He is also lucky that he lives in California, where signs on restaurants and other public establishments, give advice to similarly minded people: ‘shirt and shoes required.’

It is unfortunate [for us] that he is also hyperlexic. [translation = he can read and understand, more than is common for one of such tender years, for current purposes] Since he is also literally minded, it is difficult to argue with him; “but it dun say nuffink abowt twousers!” This kind of behavior makes a parent hypervigilant too. Turn you back for a moment and all you are left with is a pile of clothes. In the alternative, if luck is on your side, you can play Hansel and Gretel in the Mall, following the trail of clothes, because the hypervigilant, are also speed demons. But I digress.

We bow and leave Karate without the white garb, as this is our first week. [translation = newbies] The bow is his cue, he knows it’s all over. As he stands, he arches back, throws his head up to the ceiling and starts screaming his mantra, ‘no nuniform! denEYEbee NAY ked,’ at fifty decibels. I scoop him up and smile at the other participants. ‘Please let the Karate uniforms appear next time’ I plead to the great uniform dispenser in the sky. Tears course down his face and I’m grateful that as he wipes his nose on my shoulder, his cries become more muffled. Autism for him, means a certain lack of tolerance, amongst other things. His emotions are off or on, and flit between each extreme without warning. I’m fortunate that his speech delay makes him incomprehensible to the rest of the class.

His sister comes to my side, taking pity on his plight, ‘don’t worry, they’ll be here next week, I’m sure,” she says with more optimism that she probably feels.
A kindly man drifts across to us, as I herd my brood towards the door. “He sure loves class.” I smile non-committally and cup junior’s head in closer for the next ‘no nuniform! denEYEbee NAY ked,’’ I slip my hand over my sons, as he grips the neck of his T-shirt to rip it off. His bottom wriggles, trying to slough off his shorts, a superfluous shedding of snakeskin. “It can be tough for them to transition when they’re little,” he adds gently. Fortunately, I am familiar with this kind of American lingo, “yes, he’ll be just fine, as soon as I get him out to the car.”

"No nuniform! denEYEbee NAY ked,’ continues to come in angry staccato bursts, as he struggles to get his arms out of his threadbare T-shirt. I debate whether it is physically possible to remove all your clothing whilst you’re being carried, but I have no personal life experiences to draw upon?

“Yup, he sure is a determined little guy,” he says in the conversational tone of one ‘knowing’ parent to another, as we step in unison. Senior brings up the rear, but has no words, for which I am grateful. His sister joins in, addresses her little brother in a jovial voice, at just the right pitch to travel well, “you know the rule, you gotta keep em on, nobody here wants to see ya butt naked, that would be inappropriate cos we’re not at home.” I swallow hard, feeling my grip tighten on junior’s thrashing 52 lbs. The man’s face sags, his lips part, I avoid his eyes.

MORE

Generally speaking, and I love generalizations, autistic children are described as being ‘more.’ I never thought about this label until a friend of mine asked me what it meant?
“They don’t’ seem ‘more’ to me, they seem so much less?” she blurted, but that’s because I know her well and I have Rhino hide. I didn’t need to ask for specifics but there’s no harm in checking that I have hold of the right end of the stick? “How do you mean?”
“Well, they’re speech is crap, [translation = delayed, two and a half years for one of them and 18 months for the other one, which means that fortunately for me, they both speak as if they’re about 4, even though chronologically they’re 6 and seven and a half, so it’s more like having twins.] She continues, “they don’t do any sport, can’t even catch a ball, klutz!” [Translation = all American children are judged harshly upon their ability to amuse themselves and others, with a ball, although I am uncertain as to why this should be so important.]
“They look funny, you know, how they walk and all.” [Translation = one of them appears clumsy. The other doesn’t walk, he sort of sparks, as if he’s stuck his fingers in a power outlet.]
“How come he can read and the other one can’t?” [Translation = he’s hyperlexic which means he can read anything, way above his chronological age. The other one could read when he was three, but he sort of lost that ability when the autism really kicked in.]
“Why don’t they eat proper, like, you know, all kids love pizza?” [translation = pizza is poison, well that’s the opinion of one of them, but it’s not surprising because he’s neophobic, which means he’s afraid of food, which means he’s doing a wonderful job of staying alive at all.]
“How come he’s so picky clean and the other one’s such a grub?” [translation = autism is rarely straightforward, one is obsessively compulsively clean and the other is oblivious. It’s sort of hyper-vigilance for one, something, anything, everything, is going to attack him, but the other one could be buried in a pile of manure and not really notice.]
“Why is his face still all pudgy, like a baby’s? It’s just too weird to have a six year old with a baby face.” [translation = he has very little facial or jaw muscle tone because he doesn’t chew anything because he doesn’t eat anything. That’s why it’s so difficult to understand what he says because he sounds as if he’s talking with a mouthful of marbles. I just wish they were grapes instead of marbles, myself.]
“You can’t see his face anyway under all that hair!” [translation = this is a child with tactile defensiveness, like an invisible bubble covering his head to his shoulders and nothing must penetrate that bubble or he’ll bite you, though not literally. Taking a pair of scissors to that mop would be cruel and unusual punishment, and I don’t want to be had up by the authorities because I’m an immigrant and don’t want to give them any more ammunition towards my extradition papers.]
“It’s weird how they never look at you in the eye, that would drive me crazy!” [translation = me too, but eye contact is tough for autistic children, even orientating their bodies towards the speaker can take years of training. Most of the time, if they speak at all, they might as well be talking to the ether. I don’t see it as an insurmountable problem, I can think of hundreds of careers that involve no eye contact. The tech industry will be beating a path to their doorway in a few years time.]

“He’s always clutching something, he’s like a baby with a transitional object, shouldn’t he have grown out of that by now?” [translation = it’s not always the same thing, in fact it changes every couple of weeks, but without it, he’s paralyzed, he has to have it with him like a talisman. It’s a small inconvenience to pay to have a child feel safe, although I’d wish he’d choose bigger things that aren’t so easy to lose, or less of them so that his trouser pockets are permanently bulging, as it only adds to the John Wayne effect.]

“I mean, they’re brothers! Why aren’t they the same?” Ah, because that would be too easy and far too boring.

post script - this was not a 'real' conversation but a compendium of daily comments and queries from the curious.