[from the weekend]
I make him do it against his will. I make him hold the pencil, although I skip the pencil grip to correct the manner in which he grasps it.
I edge him towards my make shift chart, a soft shoe shuffle but in bare feet. He faces the chart but his chin drops down so that his eyes can avoid it.
“It’s going to be fine dear,” I coo. He raises his arm stiffly, like a lever and draws a wobbling line through ‘Saturday’. This is everyone’s visual cue that we are on the last day of the holiday. Sunday has a arrived. The last 24 hours before they return to school.
Luckily for me, I learned a long, long time ago that transitions, the passage and concept of time, were a challenge. A week’s holiday was fabulous but at the end, a monumental weeping, wailing and gnashing of teeth would ensue. People would make accusations that they might, or might not regret, based upon a faulty concept of time travel. Wild angry rebukes about theft of time, larceny of holidays, and kidnapping of leisure by some willful nere do well, would whirl around the house.
I attempt the usual platitudes, the joy of seeing ‘friends,’ a quick spiel about what constitutes a friend, the pleasure of being back in a familiar class, adding verbal clues to the visual ones in that room. He is not impressed and snuggles back into my dressing gown burying his face. He nuzzles and giggles the plumbing, holding excessive quantities of Ensure. Such affection. He mutters into the material, “but I stay home,’ he pleads. I lift his lovely face, smooth his troubled brow and utter more reassurances, that all will be well. His nose crinkles with annoyance, “no I wanna stay home and play Gameboy forever!”
Hmm. Definitely time to go back to school.
Thursday, April 19, 2007
[from the weekend]
For a faster loading version visit here:- Whitterer On Autism
A very good question. Go to the top of the class. I can offer you a dictionary definition – or the various definitions as proposed by the experts. They make for a good starting point. However, they reflect the ‘discipline’ of the expert. The cognitive expert’s version differs markedly from the behaviouralist’s version and so on.
How about -'Persistence of a verbal or other behavior beyond what is apparently intended, expected or needed.' from "Behavenet."
Or we could use "Wiki's" version - 'Uncontrollable repetition of a particular response.' We could try something more medical in it's terminology, but for current purposes, we have enough to work with, more than enough.
I have two versions to offer. They have a common element – repetition, otherwise they differ. Both of my boys, do this. They do it in different ways from each other. They each do it differently this month/year/ day, from how they did it last time around. It is essentially a moving target that often reflects the ‘stage,’ whatever that might be, at any pin prick in time.
Take the repetitive phrases, little ditties gleaned from the cosmos, that they repeat in a loop, sometimes for many hours; ‘to infinity and beyond,’ ‘Elliot…..idiot,’ ‘ I am not a number.’ Here, we have echolalic [translation – repeat as in an echo] tendencies, which complicate the picture.
What about the fixations or special interests? “ I am a train, not a boy, not a toy, not a girl, not a lamb,” with the elements of rhyme, meter and rhythm. Autistic children often fixate on a narrow subject that infiltrates any number of aspects, if not all, of their lives. Trying to dissect different elements may only confuse you further.
How about we try slipping in the tick or the stim? Stims and tics are terms used as shorthand to describe ‘self stimulatory behaviours.’ Many of us are familiar with hand flapping, flickering fingers and oh so many more variations on a theme. Many parents get in a great tizzy about these habits, in part because they are so noticeable to other people. The child with a hand down his diaper will only attract a moment’s attention. Not so the 7 year old, or older child. The child who whizzes around making train noises, repeating the phrases of the ‘Thomas the Tank engine’ books by the Rev. Aubrey, is a more subtle version. People may notice, but it’s ‘cute’ in a three year old. In an older child the same habit marks him or her in the public eye. But he’s word perfect, so it that echolalia instead?
There again, we have the OCD factor – ‘trains are busy, trains are fast, I am a train, no I can’t eat trains, eat nothing.’ The fear factor, the phobia, special interest or fixation can all play a role and confuse the picture, especially if you are not an expert. It’s hard to determine what you are witnessing, which makes it more difficult to decide what, if anything, to do about it?
Logical, very logical thinking, is a factor that plagues the ineffectual parent, frequently. A small incident of no particular significance can blow up into a major factor without warning.
Strangely, I have lots of photographs of my children having meltdowns. How could that possibly be? Why would I have a camera in my hand at such a time? Because the few seconds of delay in a digital camera, for an autistic child, can mean the difference between a photographic opportunity to capture a sweet memory and the moment of self destruction. The hair trigger, is aptly named. But I digress.
What about the child that tears his clothes, shreds and rips them? Would that be tactile defensiveness or sensory integration issues, or both? Probably, a millinery problem for the parent. What if he sucks his clothes, chews them, bites them? Is that oral defensiveness or the sensory complications? But what if he rakes his skin, pulls his hair, bangs his head, pinches himself to leave welts? Is this different or the same? For us, these have been passing phases, severe when they first manifested themselves, but less so, during the next visitation period. They come and go, which makes them closer to stims. Perhaps?
Does this help? Probably not. If it is of any use at all, it is merely to illustrate, as always, that autistic children [and adults] exist on a spectrum. There is no one size fits all.
So let us leave aside the definition of the indefinable. What do you, as a parent, do about it? Well if I knew the answer to that I would be doing a much better job than I am! All I can say, is that whatever you call it, however you define it, it exists and you need to deal with it. When these little flurries occur, you have several options depending upon whether it is of a destructive nature, be that physical self mutilation or mental self mutilation. If your child is hurting him or herself, for me, there is no other option than to intervene, distract, redirect or cuddle. If it is ‘mental’ [translation – “I am dah bad one, I am stoopid, I have a bad brain] the choices are the same.
However, sometimes [translation = often] they are calming, harmless, positive. If you have a non-verbal child and they repeat the same sentence for 40 minutes or more, it may be intensely annoying but it’s strengthening they jaw muscles. [translation – and they’re having fun] It is harmless, it is calming.
Depending upon what they are perseverating on, I find it helpful to think of the behaviour as a minor skin rash. You treat the condition according to it’s severity. If it itches you scratch it. Often it is an unconscious reaction. If it’s a warm day you scratch it more often. Maybe at night, it doesn’t itch at all, or when you’re swimming. Sometimes it’s really itchy and you have to franticly scratch away, you may even bleed a little, but it will form a scab. I don’t want the scab to turn into a scar, by doing this too often, but scratching an itch every so often, doesn’t seem quite so awful as many would have us believe.
Sometimes, it is not calming. Sometimes it is the eye of the storm, accelerating. This can be a fearful experience. [translation = for the parent] But it is meeting a need. One parent may take a child out to exercise, exhibit some sporting prowess to release the tension. Another parent must stand by and watch the eruption of the vortex, so that the child may experience peace, expended. Intervention isn’t always what it’s cracked up to be. [translation = good]
When you witness your naked child hurling himself against a glass door repeatedly, as well as all the other direct incidents I’ve mentioned already, I tell you truly, that it is difficult to think ‘deep proprioceptive input’ and ‘how can we achieve the same result is a less destructive manner?’ If one is slow, deliberate and determined, whilst the other is a fizzling firework let off in the house, I may be the one person on the planet who understands that you may just want to throw up your hands and weep in defeat. [translation = especially if they do it at the same time] But I think you’ll find, that there are far more people around with similar experiences than you might expect.
I wish that there were easy answers and that I could point you in the right direction, but unfortunately, direct experience does not necessarily result in accurate data.
But how am I so different, with my little quirks and foibles, the need to have things ‘just so.’ The temperature of my tea, made in just the right way. The song that seeps through every brain cell, that I cannot turn off, that drives me to distraction but I cannot stop, although I don’t ‘voice’ it.
What about you? Do you have your rituals? Is your nose out of joint [translation – bummed] if your commute is disrupted? Bummed [translation = annoyed] by the lack of ‘signal’ from your cell phone in a dead zone. The unreasonable manic driver who cuts you off, that you would gladly hang, draw and quarter, so long as you didn’t have to meet him face to face, or his family. When swear words [translation –cuss words] rile up like bile in your throat but you refrain from articulating them aloud.
Maybe you don’t throw a hissy fit, [translation – meltdown] because you’re an adult and have learned what is, and is not acceptable, but the gut reaction is the same.
They are all a variations on a theme, maybe a trapezoid peg in a quatrefoil hole. Or maybe, the other way around?
This is a useful site with lots of "practical suggestions."
Posted by Maddy at 8:04 AM