Whitterer on Autism

Some of us will occasionally admit to a grain or two of OCD, but for some people, sometimes, it can be paralyzing.

On a lighter note, I noticed that parents such as myself, long for their non-verbal children to speak – when or if they eventually do, I still don’t understand them.

***

I find wads of sticky tape balled up and stuck to the wooden jam of the pocket door – nasty lethal finger choppers.

I seek out the culprit.

“Why is their sticky tape all over the door dear?”
“S’not sticky tape. It’s Scotch tape.”
“Right. So why is there Scotch tape all over the door?”
“S’not all over the door, s’jus a small ball.”
“Right…So…why is it there? Were you trying to lock the door?”
“Er…no.”
“It’s very important to tell the truth you know. The reason I don’t allow locked doors is…because of…er…um…earthquakes, right?”
“Right.”
“So why?”
“To stop my ears.”
“Stop your ears from what?”
“From the door jam bang.”

***

Although sometimes, I think he’s teasing me.

“Mom!”
“Yes dear?”
“All the peoples in dis program are ….calm…..mediums.”
“Are they? What is a calm medium?”
“Itsa…itsa…Ker…media.”
“Um…try again?”
“I know…they’re all Canadians!”
“Canadians? Are you sure?”
“Er…no… they’re all…?”
“Yes?”
“Comedians!”

Which “childhood expression” to “pick” I wonder?

So I thought I’d change the focus from my typical topic to an atypical one.

The first comes from my elder daughter, back in the days when I was a single parent when everything was overwhelming. [hindsight really is a gift!]

Back then she was growing up much too fast just like many children of divorced parents. We read a great deal together, from the board books, baby books, picture books, onwards and upwards to independence. I had never liked ‘baby talk’ and so I used the same words and style of language that I do with everyone else. She had a great vocabulary as is so often the case when children are surrounded by adults: my parents, my siblings, my friends.

The details are hazy, so many years later but I remember that feeling of cozy harmony, the intimacy between parent and child when a family consists of only two units. If a parent is solely responsible for a single child a devotion develops such that communication is instinctive, words are hardly necessary – a separate world of understanding.

Madonna and child – perfection.

Maybe it was bedtime, perhaps we were at the beach, or playing hang-man? Yes! Hangman, all those years ago…

“That can’t be right dear?”
“It is.”
“I think you’ve left the ‘h’ out by mistake.”
“It doesn’t have an ‘h’.”
“Weren’t you trying to spell Bahamas?”
“Bahamas? No, it’s bajamas.”
“What’s bajamas?”
“Bajamas… you know… you wear them when you go to bed at night.”

Now if we’d lived in America then, no such confusion would have arisen, that’s why we stick to PJ’s now.

A few decades prior to this exchange, I had my own mishap with my mother, along quite similar lines. Being the dunce of the family I progressed from comic books, to Enid Blyton, to Agatha Christie and I’ve been stuck in ‘whodunnit’ mode ever since. On one particularly balmy summer’s day, [in England!] I was lying on the grass at my mother’s feet, devotional dog that I was, as I read the latest blood curling thriller some 45 years after it was first written. My mother sat in a deck chair, knitting, as only mother’s can, as she fought with a particularly complicated lacy pattern, which involved a great deal of counting and under breath cursing. Yards of fine yarn were testament to the unraveling of mistakes.

“Mum?” [I was then English]
“Hmm?”
“Can you tell me what this word means? I see it on nearly every page.”
“What is it?”
“Determinded.”
“Determinded? I’ve never heard of it.”
“Oh.”
“Can’t you guess from the context?”
“No.”
“Read me a sentence.”
“Hermione Herringbone was determinded to defeat her tormentors.”
“Are you sure it isn’t…Spell it for me.”
“D.E.T.E.R.M.I.N.D.E.D.”
“Really? How odd. Here, pass it over, let me take a peek, hmm, lets see…’Daphne Dalrymple was …’ that’s not ‘determinded’ that’s ‘determined.’”

What can I say? It’s genetic.

I’m told it’s a fifth grade rite of passage, but I can think of many other descriptions. Last year I remember “reading” about it and thinking, never in a month of Sundays.. and now it’s nearly here.

Now it’s nearly here, although we’ve been preparing for over a month, the levels of anxiety are palpable.

To list the deficits would be demeaning and fail to encompass the magnitude of the challenge.

There are lots of parents with young autistic children who are struggling to learn basic skills: dressing, toileting, feeding, talking. They’re not thinking about Science Camp – why would they? I certainly never did. I was a miserable skeptic before they arrived – it’s genetic. Such things as science camp seemed completely unobtainable, barely struggling through the average 24 hour day. We had more social stories, step by step guides and numbered sequences than I can count, some tailor made, others from the school, all designed to address the dreadful deficits.

They cover the practical -

How to tie your shoes, [a vast improvement on 'where to hide your shoes.']

They tackle the subtle -

How to be a good friend.

We also have a vast number of fringe topics -

Words – why they work
Clothes – why we need them
Food – the ultimate life insurance
CPR for the under 5’s [to ward off fear of imminent death and empower]
International flights are not necessarily fatal
Big Ben – what to do about bullies
Field trips are in the category of ‘fun’
Traffic, a survival guide
Recess and other alternative forms of torture
Bubbles, what is this thing called personal space?

But children grow, quite often in spite of us, making leaps and bounds we never envisaged. Inexperienced parents, like me, toss the old social stories aside once mastered, only to have the same issue re-appear, sooner, much later, or in a whole new format.

The practicalities loom large but it’s important for me to remember that although some tasks are difficult to accomplish physically, there’s an awful lot else going on inside his mind. A certain degree of stress and anxiety can motivate – too much and it’s paralyzing.

So would a social story help with this situation? Yes and we have one, fully and comprehensively designed by his speech pathologist at school – quite brilliant – but is it enough? Sadly no.

So whether you have a non-verbal 2 year old [been there, done that] or a tantruming 5 year old [ ditto], or a OCD 7 year old [likewise] believe you me, Science Camp is coming, it’s compulsory, there’s no escape.

What to do?

Many parents have transformed themselves into cheerleaders of the ‘you can do it’ variety – no matter how ineptly. Over the last year in fifth grade, this attitude is mirrored by the school, of the ’step up to middle school’ variety. We’re all on the same book if not the same page – rise to the challenge, but fear and doubt lurk about. Our children are much more astute than they’re credited – they can almost smell it and I’m sure there’s something in my tone and body language that gives me away. I need something concrete as much for myself as for him and that’s when I remember.

I remember the ever growing hoard of social stories, a box load of abandoned hurdles and pitfalls, each of which has been overcome. If we need proof he can do it, what better body of ever growing evidence could we have? A veritable treasure trove.

Picture Exchange Cards, flash cards and social stories – I tend to use these terms interchangeably – the format isn’t important, it’s the underlying message, without the need for words which is key.

Time is an abstract concept for youngsters. It may take a while to master it completely. Meanwhile, the practical day to day, passage of time, may prove problematical. As adults, we often forget that time passes very, very, very slowly for children.

Hence, if you are designing a social story for your child to encompass a new event, outing or pursuit, it’s as well to prepare in advance and include quite a few ‘time’ PEC’s to help our children manage the unexpected.

The unexpected may come in many forms –

- waiting while everyone gets out of the car if you’re in a group
- any preparatory activity by the parent such as locking the car, gathering belongings, setting up a push chair, fumbling for change to pay the meter
- a ‘delay’ while you pay the entrance fee

It’s basically anything that isn’t the ‘on task’ activity which means there is/are delay[s] or waiting involved.

As with all ‘new’ campaigns, timing is critical. Explain how it works first, in advance, many times, then pick an occasion when you can guarantee success, when you’re absolutely certain they will wait for a very short time, no more than a few minutes so they can experience success and relief = times up, no more waiting. This means that short of an earthquake or other natural disaster, their waiting time will be minimal.

We experienced considerable success when we later paired ‘the waiting period’ with a stop watch, the kind you can hang around your neck. Minutes of waiting could be exchanged for extra minutes at a preferred activity, later.

But be careful how you adopt this with some children, those children who exhibit obsessive traits, as this approach can swiftly morph into a strait jacket for the parent – but that was just my mistake.

Before I knew it, a symbiotic relationship developed – a run of bad luck for the me: no cash for the cafe latte, the credit card that won’t swipe, an error in the pin number, ditto with the duplicate, scrabbling for coins amongst the dust bunnies under the seats, the coffee spill which gums up the automatic window function, the refusal to be transported in a car like a wind tunnel, lengthy minutes squandered, static, as I explained the need to get back on track, a waste of breath, words and energy……..time racks up pretty quickly.

Spelling is one skill that’s often overlooked, especially if a child can read and understand the meaning of the words that he reads. Spelling that word correctly is quite another matter and may be complicated by poor writing skills, memory retention and the ability to do more than one thing at a time e.g. remember the word, the order of the letters, aural processing and the many steps of writing.

Overall, spelling can be a painful trial, a weekly dreaded nightmare where doom and failure are guaranteed. However, if you happen to have a visual learner, quite often you can take the list of words and fiddle with it until it’s a better match to the child.

Sometimes simply adding color can help patterns pop that weren’t immediately obvious.

Or Linking letters so that they stay in the right place.

Early:-

Many children already know how to spell ‘ear’ and ‘hear’ so use it.

Ask your child what time is ‘early’? for them. Curiously, they each differ and make no reference to any event such as breakfast or bedtime. There seems to be no differentiation between night and day, but they’re adamant about their particular time being early – wonder if it will be the same for you?

Then just tailor the time to fit your child.

Instead:-

Many children can remember how to spell ‘tea’ without too many difficulty. If so, you can use this visual to tie it in with so many of the vagaries of the English language.

A few steps to help along the road to success.

1. Show them the picture.
2. Describe the different parts and note the colors [use your child's favorites]
Check you’re using the same language ‘ring/fence/oval/corral.’
3. Ask them to touch the different letters with a finger or point with a pencil if digit/ paper challenged.
4. Afterwards ask them to shut their eyes and describe the scene again and ask them to visualize each bit – they can peek to check.
5. Ask them to spell the word out loud – allow them to ‘cheat’ and peek if necessary.
6. Repeat as necessary.

Cannot – those double ‘n’s can be a right pain.

Isn’t – Is not

Don’t let those tricky contractions fool you, just visualize them shrinking into a tadpole.

One of the most commonly misspelled words is the word friend. How many of us have been assaulted by ‘fiends?’ How can we best remember how to spell it correctly, and not just for the test?

For us it’s easy [or soon will be - I hope]

Name for favorite food?

Yes, that’s right, chips, otherwise known as fried potatoes.

Are you familiar with different types of potatoes?

Of course.

How about the “Nadine.”

Take your favorite food and insert a potato, a Nadine Potato.

How can you tell if you’ve inserted your potato in the right spot?

The N of the Nadine should match the END of the word, right after the FRI.

Do not substitute a real Nadine for a potato.

Not everyone can be a Spelling Bee star, nor do they necessarily want to, but this way our children get to experience success in a tricky area, without too much pain.

This beautifully illustrated tale is timely for young and old alike.

Eggbert lives in the fridge where he entertains his fruit and veg pals with portraits and painting, expertly executed until one sad day, someone notices that Eggbert has a crack in his shell – he is punished with banishment.

Eggbert tries to disguise himself elsewhere as he camouflages himself with paint so that he can blend in with many different surroundings. Each disguise fails but he continues to try until one day he makes a remarkable discovery.

Seasonal greetings to all my imperfect pals.

Available “here” and at your local library.

It’s a recurring theme. I’m oblivious early in the morning, still dressed in my robe, as we are, just for a change, behind schedule.

Wednesday’s the half way mark of the week, and therefore attractive to some, because it’s also a half day. The weather forecast predicts coldness and some of us, even thin-blooded Californians, are more susceptible than many.

My son looks through the window to see movement of trees and quivers with wide eyes. His pale, exposed, little, shell-like ears seem to shrivel as his palms cup them for protection from the buffeting wind.

What a pity his new jacket lacks a hood.

As he leaves to go and curl up on the third stair I wonder how on earth we’ll be able to transport him from house to bus, a distance of fifteen yards with several metres of 40 kph blustering winds?

It’s not an easy calculation.

I remember the hat from England, a Plymouth Argyle Football Club supporters’ knit cap. It’s green – the wrong color, but it does sport an icon of a soccer ball and a cat in mid leap. Since felines of all descriptions find favor lately, I decide to give it a go.

I grab a Sharpie in the kitchen and write his name inside. Within seconds I’m through the kitchen, past the dining room, round the sitting room, the hall and two steps up to entice him. I can’t hear the bus engine through the closed window, yet, but it’s on the way, very shortly. I play teasing temptress as I lean over him before ramming it on his head, with my hands pressing the fabric against his ears, capturing the warmth.

“Wot is dat smell!” he asks – more of a statement than a question. I find it hard to recall my itinerary with any degree of exactitude. I examine the options over a period of more than two hours; vat of espresso, unwashed after a hot night, Dial dish wash soap, 409 – killer the germs – solution, new Clorox toilet block, trash bag contents and recycling today, hand soap, laundry soap, as it’s best to start early, mouth wash to neutralize coffee before kiss, is there some kind of preservative in the pristine new hat?

All in all, it’s a veritable nightmare of toxic waste – a cocktail of chemical smells – but which one would predominate……
“I think perhaps….its…?”
“I always love dah smell of Sharpies Mom!”
“!”

p.s. How to have a ‘hot night’ when you’re all on your own with your spouse many thousands of miles away, abroad?

Go upstairs, turn off the lights, get into bed and put head on the pillow, pass out, awaken intermittently to find a big, fat, furry, demented orange cat on your head. Bark at cat. Fall asleep again. Repeat.

I enjoy every second of my twelve-minute lie in and then dash downstairs at 6:12 a.m. – chaos.

Start calculations – need to arrive at 11 and it’s a 38-minute drive – allow an hour in case of stops, emergencies, getting lost time and Saturday traffic. 5 to 60 minutes for breakfast and clear up. 30 to 90 minutes for dressing to include, socks, shoes and teeth cleaning. 10 to 25 minutes toileting, jackets and entering car with seat belts buckled. Equals 3 hours and 55 minutes – loads of time and time to spare.

It was a definite possibility three months ago so I jumped at the chance – we prepared just in case. Horses are just like dogs, but bigger. Every time they sat on Thatcher, I’d trigger a meltdown, deliberately – ‘look at you! If you can ride a dog a horse will be easy!’

They’ve conquered ‘fear of dogs,’ and they’ll conquer ‘fear of horses.’

Both the boys have left their warm jackets at school for the weekend – normally this wouldn’t be a problem, seeing as how we rarely venture far from home, and when we do, it’s more likely to be around mid-day when the chill has burned off – today we head out to the wilds of Monterey where they have weather and mud.

Dig out second, old pair of shoes for them both, select favorite snacks as bribes, drinks, check first aid kit, and pack all possibly emergency supplies in the hope of successfully surviving as solo parent during an hour’s drive. Grab camera at the last minute – if there is one single moment of joy I shall capture it for the record.

Watch a woman outside on the road running for her life, otherwise known as jogging – if I could get someone to watch the children, I would do likewise.

We were offered two places at the therapeutic riding center a couple of years ago – the boys weren’t ready. We were offered places again last year – just before the budget cuts. So here we are, third time lucky, possibly.

In the car we try to listen to a CD of Horrid Henry – ‘The Hike’ – written by Francesca Simon and read by Miranda Richardson,* over the din of the boys who scream in the back. I allow my daughter a reprieve, up in the front passenger seat now that she’s only an inch shorter than me. I keep an eye on her – self wrapped, clamped tight and hunched, as she turns her face towards me, “Horrid Henry wouldn’t last five seconds in our household!” Although the boys give every impression of oblivion, they both manage to chime in perfectly, every time the story reader says ‘Stop it Henry! Don’t be horrid!’ My daughter rolls her eyes with exasperation.

“Whadif they won’t talk when we get there?”
“Lets just hope they have their ‘listening ears.’”
“Whadif they say something unfortunate?”
“I don’t suppose it will be anything they’ve not heard before, or a variation on a theme.”
She pushes herself back into the headrest and shuts her eyes.
“I don’t know whichis worse, when they scream or sing that darned song.”
“MANAMANA” is definitely trying, but at least they’re happy.”
“I jus can’t work out how they ever heard it?”
“Neither can I. It’s ancient. From the sixties, I remember my brother, your uncle, singing it.”
“Whu!”
“I can still see it. The singer was this dark character.”
“Dark?”
“Brown, and very hairy.”
“Mom!”
“He was a muppet.”
“Mom!”
“Not that kind of a muppet, a real Muppet.”
“What the heck is a muppet Mom?”
“I keep forgetting how young you are. Bit like Sesame Street puppets. I’ll show you later when we get home. Don’t suppose you’ve heard of Kermit the Frog either? Miss Piggy?”
“Whah?”
“Never mind.”
“Whadda we gonna do if they make a spectacle of themselves?”
“If they can’t make a spectacle of themselves at therapeutic riding stables for differently abled children, where can they?” I beam.
She giggles and flutters her eye-lids – wicked.

Arrive at the stables, late, with two screaming children – doesn’t give the best impression of our family. Vomit noises emanate from my youngest – farm fresh air doesn’t suit everyone, “dat is a worserer smell dan my bruvver!” He falls out of the car, wraps his arms around his skinny rib cage, and tippy toes off like a top, in the general direction of the office. His older brother staggers in the same direction, hunched like an ancient, as if every limb drags half a hundred-weight of potatoes. The pre-teen looks on, aghast, but is quickly distracted by more interesting eye candy – horses.

One whole hour of introductory, orientation.

We drive back home – the boys are out cold in the back, mentally, emotionally and physically exhausted.

“That was funny,” she giggles.
“Hmm?”
“When he said to the lady that the horses had x-ray vision and shot laser beams at him.”
“She didn’t bat an eye-lid though did she!”

I ponder.

I think of the many, many hours my daughter has endured in waiting rooms as her brothers were tortured by every conceivable variety of therapy known to mankind, while she would salivate at the window, hoping for the chance to share a few moments occupied with similar activities. She’s been short changed for far too long, just like all the other children in the Siblings book I read last week.

“So when we go next week they’ll be there for a whole four hours. Would you like to stay and watch, or shall we go and do something else, together?”
“You don’t have to stay with them?”
“Apparently not. In fact they’ll probably do better without me.”
“Four hours?”
“Well, probably 3 if we drive half an hour to somewhere and leave half an hour before to get back on time.”
“What’ll we do?”
“What would you like to do? Your treat.”
“Um…a whole three hours? I don’t know.”
“What do your friends usually do on a Saturday morning?”
“Shop.”
“Oh. Really? Sounds great. Lego Store?”
“Not without the boys – wouldn’t be fair – wouldn’t feel right.”

I drive a few more miles in silence as I watch her brain whir, from the corner of my eye. I try to think what I did, more than a decade ago? I have no recall whatsoever. Whatever it was, it’s clearly unremarkable.

“I don’t think there’s anything I wanna buy. Anyway, I owe you three weeks pocket money.”
“You do?”
“Yeah. Remember? I bought a pair of Heelies. You subbed me coz I didn’t have enough.”
“Oh. Right. What else would you like to do then?”
“The beach looked nice.”
“It did. Would you like to play on the beach?”
“Maybe. We could pack a blanket. Sit down and be quiet.”
“We could.”

It strikes me that if I sit down, static, I’m highly likely to pass out – I could win an award for sleeping if I ever had the opportunity.

“Could we take a picnic too..…with real food?”
“Absolutely.”
“No Goldfish crackers.”
“Oh go on! You like them really.”
“Spose…..I’ll take an alarm if you like?” she offers.
“An alarm?”
“In case we both fall asleep.”

p.s. I do not endorse this as being either beneficial or curative, be that cat, dog, tortoise, horse, fish or dolphin therapy, although this does appear to be an exceptionally progressive program. ‘Beneficial,’ is more than enough. Anything else is a bonus. There is the remote possibility of a little enjoyment if we’re lucky. Failing that, in any event, at the very least we shall have spent a quantity of time outside the house, otherwise referred to as the ‘cell,’ and expanded our horizons by an inch or centimetre.

* Highly recommended to improve aural processing, [and fun] but don’t blame me if your children acquire an English accent.

A bonus for the digital and tactile challenged person.

Never look a gift horse in the mouth!

This is a small, short book for children, with an important preface for the adults in their lives.

I have had this book in my possession for a considerable period of time. While it’s unwise to over analyze, I’ve been in two minds about the Liam series, for a number of different reasons. Jane Whelan Banks attacks the main stumbling blocks for many of our children – the mystifying world of social skills. In fact, I would describe this as a social story, a entertaining teaching tool.

I know a great many children, on and off the spectrum, who think and behave very similarly to Liam. Jane captures the dichotomy – Liam values his performance talents, which others do not, while other people value different skills, which Liam doesn’t value at all.

Some will interpret Liam’s behavior as acting up or showing off – he deserves to be ignored. Other people may see a child trying very hard to ‘engage’ with other children but who is rebuffed, repeatedly.

Jane concentrates upon demonstrating coping skills for Liam and children like him, as well as developing a logical explanation for the other childrens’ behavior.

A few points to ponder.

Some readers object vehemently to the illustrations, essentially stick figures with splashes of color. There are several sound reasons for this approach: any child can identify with Liam. A long time ago, my children had difficulty identifying with a character who looked very different from them. Additionally complex and elaborate illustrations can distract from the message – picture books proliferate, there are many to choose from. Some children cannot bear to look at faces or pictures of faces or photographs – anything more than a line drawing is unacceptable.

Some readers may suggest they can draw better illustrations and make better social stories themselves – in which case, good for you. However, some people cannot draw, even stick figures. Other people may find there own beautifully illustrated and poignant home-made social stories are ignored by their own children as they do not have the same legitimacy as a published book.

I look forward to future publications as Liam and his family grow.

A note to the publisher – on the next printing, please put the picture of Liam on page 23 in a ‘think bubble’ – otherwise readers may believe it’s o.k. to stick your tongue out at people.