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Sunday, March 21, 2010

You can lead a horse to water

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.”
“I can still see it. The singer was this dark character.”
“Brown, and very hairy.”
“He was a muppet.”
“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?”
“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.
“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?”
“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?”
“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!

Liam Knows what to do when Kids Act Snitty, by Jane Whelen Banks

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.

Rex - A mother, her autistic child, and the music that transformed their lives

You may wish to watch this "15 minutes" video first - that way I won't 'spoil' the book for you.

Did you watch it to the end? If you did take a deep breath and try not to rant about the bit about autistic people having no emotions. Pity Cathleen wasn't able to edit that bit out, but I imagine that 'personal control' and the 'media' are contradictions in terms.

It is an astounding achievement for a first time writer to produce a readable and engaging account of extraordinary lives.

Cathleen is a woman of faith and determination - would that we all had such fortitude. Parents of special needs children will relate to her journey and the struggles they endure, all the more so when Cathleen copes as a single parent.

I read about and understood some of her frustrations, as I cheered her on in the wings, as she dragged herself up the learning curve into a whole new world, one that's always been there, but not many of us noticed, until we found ourselves in the same place, quite by chance.

I had selfish reasons for reading this book after I watched the video. I'm sure we all admire the talents of savants but I wanted to understand the disconnect between extraordinary abilities and profound disabilities, some insight or clue. Cathleen describes Rex's trials with the everyday minutiae of life - shoe laces, buttons, snaps - and yet his fingers are alive on the keyboard. My very ordinary children have similar difficulties, but now they're older, their fingers can manipulate a computer keyboard or any other electronic gaming device, slot together tiny pieces of Lego with determination and creativity. Not the same thing, but sufficiently similar to drive a parent bonkers.

The turning point for me, was towards the end of the book. Rex was struggling at school and unable to learn braille due to his extreme tactile defensiveness. After a particularly difficult encounter with the school, she called an emergency IEP meeting to address her concerns. The tension during that meeting flew off the page, the emotion palpable, but she held it together and advocated for her son in a calm, logical and persuasive manner.

Whatever the future holds for Rex and Cathleen, I'm sure it is far brighter than she ever imagined.

You can buy a copy from "Thomas Nelson Publishers" and "here" or at "Amazon."

And a quick note to the publisher:-

For those of us who are lucky enough to be able to see and have the ability to read, I thought I'd mention a little detail:-

Maybe you didn't notice, but those little blocks of italics, with an important quote from the main script are very distracting - the eye hones in on it not matter how hard we try not to.

Also, as the text flows around the little boxes, it makes the pages turn into letters - in this instance 'S' and 'C' - just in case you hadn't noticed.

Each book should come with a couple of free thumb covers.

Hope you don't mind me mentioning it.

Get Out, Explore, and Have Fun!

Lisa Jo Rudy is like Switzerland - neutral.

Unaligned with any faction and without an agenda - a real breath of fresh air.

Sometimes you read the title of a book and cringe inside - 'great concept but how exactly am I supposed to do that?' Lisa Jo fails to give me a glib reply - no, 'how to fix it quick' response, which is precisely why this book is readable, helpful and practical.

Lisa Jo gives us an in-depth and well considered approach to help us change how we think about some of the difficulties we face when it comes to 'getting out and about.' Her 'no nonsense' approach is refreshing and I particularly warmed to the underlying philosophy - yes all autistic children need education and some need therapy, but not to the exclusion of everything else that life has to offer.

So far so good, but how would this book help?

This is where trouble begins. Lisa Jo's son Tom, is one speck on the spectrum, my two sons are different specks, and I expect yours are too. How can book address all these different individuals? We're back to the same stumbling block - the spectrum.

Personally, I have a deep dislike of experts with a 'holier than thou' attitude who hand out edicts from on high for us mere mortals to execute - but don't worry, we are in safe hands.

How can I get my children 'out and about' at their present stage of development? Currently, we're still tackling the basics, eating, dressing, toileting, hand-washing. Although we have 'speech' more frequently, it often abandons us at times of stress. When are they stressed? Every time we go 'out and about.'

So rather than project and guess how it might help you, instead I'll tell you how it has helped me.

Firstly, because I've been busy and out of touch with the real world, Lisa Jo's book made me realize how much attitudes have changed towards children with disabilities How much more accommodating different institutions have become and how to 'exploit' this to benefit my own children.

I particularly liked her check lists, tips and pertinent questions to ask. I'm often tongue tied and or distracted by herding children, so a list of relevant questions that elicit accurate information will put me in a much better position to decide if our chosen activity is a good fit, and hopefully avoid some of the more obvious pitfalls.

Her book is a timely reminder of lots of things that I already knew, but had either forgotten or dismissed as irrelevant - what was irrelevant two years ago is now 'doable.'

Lisa Jo also gave me lots of ideas, but I won't spoil the experience for you of finding out for yourself, but by way of example - my child may be unable to catch a ball but he could easily keep score for a team and so be involved by a different route.

It reminded me to keep trying, no matter how long the list of 'failures.' Indeed, many of our 'failures' might well have been avoided if I'd taken a few tips from Lisa Jo in my initial research.

I liked her approach, her 'out of the box' thinking, encouragement to tailor the activity to the child, their interests and fixations, but also taking account of their individual limitations.

I was interested to read her interview with Donna Williams in her chapter about the visual and performing arts - helpful to parents and students alike.

I was delighted to learn about Autism on the Seas, in her chapter about summer camps and alternatives - sufficiently motivating to make me consider tackling my own seasickness.

This is an inspirational read for me. Anyone who has the ability organize and create their own camp, as Lisa Jo did, deserves my admiration. Her final chapter on 'inclusion' should fire me into action.

Lastly, I leave you with 'one' of my favorite quotes:-

'There's a strange myth out there that people with autism have no emotions.'

What more do you need to know? Hallelujah!

You can find details about the book "here" at "Lisa Jo Rudy", pre-order it from "Amazon" or straight from "JKP"

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