Social Compass:- how we fail our children

Sometimes my head hurts as I try to keep ahead of the wide variety of scenarios in every day situations. I believe that this is why autism is exhausting, not physically, but the mental gymnastics of holding together a wide collection of possibilities, weighing, comparing and analyzing the likelihood of any particular outcome.

One of the reasons that some parents are extremely inefficient is because they fail to adopt an adequate decision making matrix. To paraphrase “Quality Tools”:-
A decision matrix evaluates and prioritizes a list of options. The team first establishes a list of weighted criteria and then evaluates each option against those criteria. This is a variation of the L-shaped matrix.

This is a simple approach for parents to absorb, strategically and systematically. Once this “system” is in place apply logic:-
The a list of options must be narrowed to one choice.
The decision must be made on the basis of several criteria.
The list of options has been reduced to a manageable number by list reduction.

Just like that we regain control so as to more forward on a consistent platform. If only more parents would follow this logical path, then all sorts of social situations would become a breeze:-

We wait for my daughter to return from school after a field trip that runs late. My older son climbs the play structure with all the other waiting siblings. Mother’s huddle in groups chatting. I sit on the bench with my youngest son curled up horizontally in my lap, as he endures the torture of ‘wait.’

One of the siblings comes in the form of a small four year old or large three year old. He play punches my son as he climbs. It’s good humoured on both parts. My son gets the chance to play the cool, tolerant older kid. I concentrate on the child that meows, furled tightly on my thighs. I stroke and massage his shoulders to keep him calmer, if not really calm.

A mother approaches Mr. Punch as his enthusiasm grows, “hey, stop beatin up the big kids,” she calls playfully, because we all see the joke, huge nine year old and a little enthusiastic tot.

The children disperse into different groups and activities. The small boy follows my son, or possibly the other way around, as he always gravitates to little kids, given the opportunity. I watch as the play punches get harder and more frequent.
I wave an arm and call his name, but he blows me off, “it’s o.k. mom, I like it.” I know that he does, the attention, the physical contact and anyway, it’s fun. What would a typical nearly 10 year old do in this situation? I have no idea.

I dither as I watch at wait. He seems to be holding his own. Another little boy joins them. They both throw punches, encouraged by my son:- ‘bring it on.’ He laughs and jokes with them. Two against one isn’t fair, but it’s not two against one, it’s two eights against one, and they’re not really against. He play acts pain, an exaggerated cariacature with a huge grin on his face, which encourages more blows, if you can call them blows, which you probably can’t. The weight on my lap shifts as he turns his attention to his brother, “he is play wiv his friends?”
“Hmm, yes he is.”
“I play too!” he announces as he zips off to join the other three, stiff legged and armed, Mario style. I remain on the bench uncertain. I look at my two large boys who almost match each other in height after a brief growing spurt. They currently enjoy the number of enquiries, “are you guys twins?” the attention, the joke, the trick, no matter how often, as repeats are welcome.

The little boys’ focus remains on him, as my younger son stands on the periphery, the sidelines outside of an invisible field of shared attention, a exclusive boundary.

Now my focus changes. Not on my son, who is happy to bask in their attention, but to the possibilies from my other son. He has been known to defend his brother from what he perceives as attacks. Commendable mis-fires. There is the chance that he will join in and either punch his brother, or worse still, punch one of the little boys. It’s just the kind of thing that we hear about in the media:- ‘autistic child caught in unprovoked and mindless attack on innocent toddler.’ There’s never a back story. Sometimes the back story comes later, but it’s the headline that sticks in the mind of the public. It’s not dislodged, erased or superceded. As a result the public is left with a random collection of negative assumptions to apply to the autistic population, a general shorthand. Each additional headline loads another brick in the wall of segregation, isolation and mis-information.

My son would be copying and joining in. He would be adopting the apparent cultural norms. He would be unlikely to hit them hard but he is double their age and size. Alternatively, one of the little boys might hit him. If this should happen, he who cannot be touched by anyone, would be likely to scream the place down, which would be fine if a little disconcerting for some, but he might hit back, which would not be fine.

If I step in I am both a kill joy and over-protective. If I remain un-engaged I risk serious fall-out. If I step in, I need to decide how? If I don’t hurry up the decision may be taken away from me. I glance at the mums who chat with an eye on the road for the awaited bus. Until I saw her look, I had completely forgotten about the bus. And look, there is the bus! I blink back at my son who is on the ground doubled up. No sign of the tots as they scamper off to the bus. His brother crouches by his shoulder with his arms over his head, as he rocks in commiseration. “It was an accident!” he yells, “that lil guy didn’t mean it.”

I’m sure he’s right but my decision making matrix is wrong.

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Na, na, na, na, na

Slurping Life
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At bedtime my children exchange squawlks from their different rooms. My daughter prances back into their room dressed from head to foot in blue, for no apparent reason. Her youngest brother ignores everything as he reads his Garfield comic books, as the other two set to.
“Why you are blue now?”
“No reason. Night shortie.”
“Why you are call me shortie?”
“Coz you’re short, shorter than me.”
“Oright, night tallie.”
“You like tallie?”
“Sure. You’re gonna have to try a lot harder in the insult department shortie.”
“Oright. Night bluey.”
“You like bluey?”
“Sure. Why wouldn’t I?’
“Oright then. Night butt head!”
He, who has not been listening, erupts from his bed, casts Garfield aside and launches into siren mode, “alert, alert, alert, inappropriate speech pattern, inappropriate speech pattern, inappropriate speech pattern!”

No doubt, another restful and blissful night awaits.

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Perspective taking, anxiety and stress

I listen to a fascinating interview with “Robyn Stewart” on “Woman’s Hour” about the stresses and strains of living as an autistic adult in the UK. How the provision of services is dire. How small incidents of no apparent import can have a paralyzing effect on an autistic individual throughout adulthood.

The newly weds retire for the night. I prompt my children to say goodnight at 7:30 in the evening.
“Geez you are night night time already?”
My youngest daughter blushes as she hugs her big sister.
“Dat’s it.”
“What’s it.”
“Dat is dah baddest fing I have ever bin hearded.”
“Heard dear, heard.” I see the signs. Fast speech, tense body, wringing hands, angry tone as he begins to fizz.
“I’m never gonna be a married.”
“How come?”
“I don like dat rule.”
“Which rule?”
“Dah sleeping for marrieds at 7:30.”
“Ah……well that’s because…….he Brazilian, nothing to do with being married. Dad and I are married and we’re wide awake.” Once he has latched onto an idea it can be difficult to resolve, distract or deflect.
“Er… are American marrieds or English marrieds?”
“What time is English marrieds are sleeping?”
“What time is American marrieds are sleeping?”
“Oh American’s go to bed very early indeed. Most of them go at nine o’clock because they get up so early, just like you do come to think of it.” His hands clench the material on his trouser legs as he hones in.
“What time is Chinese marrieds are sleeping?”
“Well they’re 15 hours ahead of us in Beijing so it’s the middle of the afternoon for them.”
“What time is Australian marrieds are sleeping?” His increasing agitation continues to spiral.
“Well Australia is very big too, so it depends which bit of Australia you’re in.”
“Aghhhh! Where I am to be a married who is not ever be sleeping.”
“The land of the midnight sun dear. It would be perfect for you…..apart from the snow and ice of course.”
“Aghh dis is impossible.” It’s easy to identify the spark once he’s on fire. It is far more difficult to dampen down after ignition.
“Well you’re not likely to be getting married any time soon, so you don’t need to worry about it right now.”
“What about my childs?”
“What about your children? You don’t have any children yet either.”
“My childs will be like me?”
“Er……perhaps. You never can tell.”
“How are you not know any of deez fings?”
“Well………there are just so many mysteries…….we can’t know everything and we can’t predict the future.” Platitudes are rarely effective. I watch him begin to pogo on the spot with clenched fists and bared teeth because I lack logic, amongst other things.
“Tell you what though!”
“Wot!” he bellows on his last centimeter of string.
“When you marry you’ll be an adult and adults can follow any rules they like.” He exhales as he flops onto the floorboards in a heap, spent. Maybe, just maybe that’s enough. I wait as his eye lids flutter.
“Yes dear?”
“How long until I am an adult?”
“About ten years, give or take.”
“Ten years! Dat is unbelievable!”
We begin the next spiral.

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The difference between Sarcasm and Irony, a demonstration

“Geez Mom! I’m sure gonna be the most popular student on the bus if I wear that thing.”
“Oh I don’t know. It will keep you warm and dry through. It’s going to be a beastly day tomorrow.”
“Yeah you are gonna be my most popularist golden sunshine dresser.”
She gives him the pre-teen death glare, “I was being sarcastic!”
“You will be being……dah same sunshine golden colour as dah bus.”
“Exactly. Did you hear that Mom, even he gets it.”
“I am love dah golden sunshine dressing.”
“Well if you like it so much why don’t you wear it on your own field trip then, lil ole Sunny Jim.”
“I can be wearing your big girl jacket?”
“Actually it’s really unisex dear. It’s fine for girls or boys.”
“Dat is great for me coz I am being part girl cat and part boy dog.”
“Not the dog cat thing still. Listen to me, you’re a brother and a boy.”
“No…….on my field trip I’m gonna be a Chameleon.”
“Huh, what about the dog cat thing?”
“On my field trip I’m gonna be ……….invisible,” he adds with a voice of mystery and tantalizing fingers.
“Great! An invisible neon blob that can be seen from fifty miles away. You’ll be luminous not invisible. You couldn’t pay me enough to wear that thing in public.”
“I…….wear dah Chameleon coat so I am blend in wiv dah bus……..and……I am wear it for free.”

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Atlas – almost wordless

5 Minutes for Special Needs

I hang from the door jam after a long and wearisome day for a few moments, as I wait for the play date victim to be collected, late.

My son and his victim stumble past me, a very obvious obstacle. The passage on either side is obvious to most people but they both bumble into me nonetheless. This is not because they are clumsy, but both lack a certain degree of spatial awareness.

His friend pauses and turns back to observe me, from head to toe and then back up again.
My son gives him a little shove, “iz o.k. Mom’s jus holdin up the house a bit.” It’s the kind of intimate nudge between pals, a little over enthusiastic, but perfectly socially acceptable.

The xylophone snaps of spinal relief are very welcome.
“I fink………..yur mom is broke!”

Can I help it if I have monkey arms!

If you enjoy caption competitions and photographs, you may wish to nip along to“DJ Kirkby” over at “Chez Aspie” and test your brain power.

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Get organized

Tackle It Tuesday Meme

Try This Tuesday
Try This Tuesday

I don’t know about you, but around here we have far too many clothes between us. More importantly, we have many clothes that none of us ever wear. Hence this week’s tackle is to try and wither down the surplus.

The surplus is easily minimized with a critical eye.

Firstly huck out all the clothes with broken zips, lost buttons and snaps or items that are otherwise unwearable in their present condition. There’s no point in cluttering up the closet with those, so heap them up into a basket and then one day soon with there’s a full moon and an R in the month we can tackle the contents of the new mending basket. Hope it’s not a trunkful?

Next remove all items that are too small for your children because they have grown, hopefully. This is particularly tricky for us because all our clothes have had the irritating labels removed. This means that your negotiating skills are to become finely honed. Although you know that the T-shirt is really for a three year old, you may have a hard time convincing your 9 year old that it is far more than skin tight.

In your own closet it might be a good time to remove all suits if you are a stay at home parent. There’s no point in keeping them as when you do return to work I can assure you that you won’t be seen dead in 80’s shoulder pads. Smart working clothes in good condition can be donated to local groups that support women returning to work who are financially strapped.

Lastly, if you haven’t worn it in the last year then it’s time to donate it to charity where someone else might actually use it.

Another idea is to invite your pals around with their unused clothes and simply swap different items. Do I mean trade? Does it matter if no-one has anything that you’d like yourself in exchange? Not really, you’re still gaining closet space.

Watch this space as next week we’ll be tackling ‘how to make a label for your trunk full of mending?’ So much easier than actually tackling the mending itself.

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Please excuse my dear Aunt Sally

A variation to this mnemonic is when a child makes there own version which personally reinforces the order for tackling the order of operation. Mine came up with two versions but either way it’s certainly embedded my skill set which certainly should help with homework.

And just in case you need a reminder it’s:-

Hosted by “Tracy” at “Mother May I,” but the photo-picture below will whizz you right there with one click.

Just call me snap happy.

red BSM Button

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Community Service for autistic people

Warning :- spoiler.

Happenstance is always just waiting to happen. I am thunderstruck when my son tells me that he would like to share his new book, “Surprise,” with other children. Moreover, he is keen to draw a picture to put in the back of the book to share with another children. Any book that provokes that kind of response certainly has my vote 100%.

However, I’m at a loss as to how to make this happen in real life. The most obvious choice is to give a copy of the book to the school library but I’m also keen to support our local library. Although I believe I am single handedly funding the local library through my own copious fines, it would be good to do something extra.

I grit my teeth and high tail it off to the library in search of the head of children’s library services. I need to execute his ideation. I run a script through my head, a diplomat one. His need to present the book personally, to a human being. His frequent inability to express himself verbally, as he should like to do, especially in a large echoy building with lots of busyness and people. Our need for this to be a positive experience for him.

Of course the head librarian is unavailable, and unlikely to be available in the near future due to the imminent arrival of her first born.

Typical! I blink at my friendly informant as I dither.

So near and yet so far.

Yet another brilliant idea dies in the dust as I acted on impulse, failed to think through my plan of action and have no back-up plan.

I take her to one side to see if there is any chance that I can make myself understood in private. I start to explain. As soon as I start to explain I also begin to ramble, talk too fast and stare at her toes as I feel a fire of tears well up as my words dry to close with ‘because he’s autistic.’ How can you explain an occurrence of such a precious rarity? I look into her face because I am probably talking Swahili. Fortunately, it turns out that we speak the same local dialect, the mother tongue.

She tells me about a librarian at the nearby branch, who runs a reading programme for children. I’m encouraged to contact her, afterall she beams, “she has an autistic son too.” Not only am I dumbfounded, again, but also completely gobsmacked.

Appointments are made.

Arrangements are finalized.

I explain to him that his plan will take place. He squeals with delight which induces speedy back pedaling on my part. There is nothing like having high and very specific expectations to ensure doom.

Every night at bedtime after reading, I remind him of our impending visit and run through the many pitfalls of public.

When the great day arrives, we arrive early, all the better to acclimate. It puts me in mind of his earlier years when we tried and tried to attend those reading programmes. We tried and tried until I finally gave up torturing my son. My son could not sit still, or sit come to think of it. He was unable to tolerate people reading familiar texts in the wrong way. The other children were too close. The fluorescent lights were the kiss of death.

He takes up position at the back of the room, which I deem to be an admirable coping strategy on his part. However, I am delighted to learn that his purpose is to avoid being too closely associated with all the little kids because he recognizes himself as ‘older,’ which is even more remarkable to his dim witted mother.

Whilst all the little children attend to stories, sing songs, follow along with hand gestures, my son lolls on the back bench. Anyone observing him would assume that he is oblivious, however, this couldn’t be more wrong. He reads half a dozen books during the early part of the programme but as soon as the librarian announces his book, he lies on his back to stare at the ceiling and march, horizontally and quite quietly. On completion, the librarian asks the children to thank him for his gift, which they do so readily and with a surprising amount of enthusiasm. He whips himself up into a sitting position and speaks for the first time since we left the house, 55 minutes later, the monastic silence is “broken, and you can hear him here.”

I don’t know where that came from?

Please visit Karen Andrews over at her blog called “Miscellaneous Mum” and check out the book “Surprise,” over “here.”

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Joined at the hip

Slurping Life
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We bimble home from school with our pal, a mutual pal of both my boys. This is one of the great advantages of combined grades of some special education classes, the overlap of friendships and oodles of common ground amongst different age groups and abilities. They all grow older, better able to articulate their preferences, which run the gamut. A combination of sweet innocence and advanced sophistication.

My sons sit either side of their pal, three in a line. They both mimic their pal’s distinctive voice, intonation, emphasis and terminology, with perfection. The phrase ‘oh my god’ has recently slipped into his vocabulary, as it does with so many children. Whilst we also had this for a while too, careful actions by school and home alike, has caused extinction. I would prefer it not to return. They paw over the book and discuss favourites, their first favourite, their second favourite ad infinitum. Amused, delighted and engaged during the journey. My daughter points out the snow on the mountains. My daughter points out the child with a bunny ear head band. My daughter points out the skate boarder pulled by a dog. There is no end to the list of entertainment outside the car but the boys concentrate upon their indoor choice, as three pairs of feet kick to the same rhythm.
“Oh my god. That Coral snake bit off her finger.”
“Oh my goodness!” I squawk from the driver’s seat.
“Oh my god. That Asian cobra bit his arm.”
“Oh my goodness!” I repeat in the hope of penetration as my driving concentration dwindles. With each remark my boys howl with laughter.
“Look over there guys! D’ya see that kid has a heart balloon,” offers my daughter in a loud and enthusiastic tone.
No-one else looks. I give her a quick beam.
“Oh my god! That Fierce snake bit his finger.”
“Oh my goodness!” I need to think of another strategy. This is pointless but at least the car remains in the correct lane.
“Hey guys! Look over there! It’s an aeroplane with a message banner.” She’s relentless in her attempts to distract whilst I concentrate on the road.
“Maybe you could be a teacher or a therapist when you’re older dear?”
“No way mom! I’m gonna be a dog walker.”
“I spose we can’t make em stop kickin either,” she adds wanely.
“At least they’re all happy as clams.”
“Oh my god! That Reticulated Python bit his face.”
“Oh my goodness!”
“I can’t quite make it out…….it’s too far away…..can you drive a bit faster mom so I can try and read it?”
“Oh my god! That Massassauga snake bit his horse.”
“Oh my goodness! Too much traffic dear and I think it’s going the wrong way.”
“Oh my god! That Asian Pit viper bit her wrist.”
“Oh my goodness! You certainly know your body parts young man.”
“Hey guys. Look over there. That guy’s sellin roses. Hundred of em.”
“Oh my god. That Bushmaster bit that girl.”
“Oh my goodness! How can you tell it’s a girl?”
“Coz…………. of the sexy legs.”
My daughter and I lock eye balls before she splutters, “he sure told you!”

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Autocue – spoonfeeding

Sometimes it seems as if we have been going to occupational therapy forever, certainly more than five years. Together, the boys had 13 hours of different therapies a week up until the time that I had jaw surgery.

At that time we dropped everything except for the two double therapy sessions on a Wednesday afternoon, double occupational therapy and double speech therapy because Wednesdays are a half day at school. Their “father” took them during my period of recouperation. It gave him a far deeper “understanding” and greater “involvement” such that when I had recovered and was ready to take up the reins again, he decided that he’d prefer to keep taking them himself.

These days I take them occasionally when his schedule doesn’t allow him to go, like when he is abroad on business. Hence when Wednesday looms, I am secretly dying to see how their session will pan out with their father away. I’m uncertain what kind of routine they have developed, independent of my input.

In the past it was a great struggle because it was a transition and because therapy was hard work for them. On arrival, they used to enter the waiting room and then I would prompt them to tell their therapists that they’d arrived using the intercom. This meant pressing the button and speaking clearly into the audio box simultaneously. They used to have to use the step to reach the box on the wall, but they are considerably taller now. Each step took a great deal of prompting. On completion I would prompt them to remove their shoes and socks and stack them on the shelf. This also took a great deal of prompting, times two.

These days, they have had many years of practice, many years of prompting. I am keen to see how they will fare.

On arrival at the waiting room, one runs to the window to take a peek into the studio and the other flops onto the sofa. I wait. I observe. There is no further movement from either of them, nor any words. I wait. I observe. I sit on my hands and then put my elbows on my knees with my hands over my mouth. I wait. I observe. It soon occurs to me that I will wait for ever and that there is nothing to see. No action is likely to be forthcoming. I feel suddenly quite saddened for no apparent reason. There are lots of reasons that could cause sadness, but none of them are present, but still, the inertia drags me down. Just like other children they dawdle and are easily distracted. Just like some other children we have the ever present hurdles of inertia, ideation, sequencing and a serious lack of executive function regardless of the label.

I feel a tiny tickle at the back of my brain, deep in the depths from my years of speed reading to track down useful clues and tips. I became a butterfly reader immediately following their diagnoses, hopping from topic to topic, the brief overview and the summaries, gleaning the finer points but missing the big picture in crisis management. There are many tomes just on this one topic:- introduce the new behaviour, positively reinforce the new behaviour and then ever so gradually fade the supportive reward system. It is the fading of both the reward and the prompt that engenders independence. Without that final step they become reliant upon the prompt.

There again, there’s always the possibility that it’s nothing to do with autism, merely tired kids.

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