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 pristinely 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!”
Sunday, March 28, 2010
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.
Sunday, March 21, 2010
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?”
“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 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.”
“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.”
“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.”
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.
“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.
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.
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"
Sunday, March 14, 2010
I understand some of it.
Part of it is woolly terminology.
How can it be a bathroom if it only has a shower? Why is it called a sitting room when no-one sits there? Dining room is meaningless if ‘dining’ isn’t in your vocabulary. The situation is made worse by parents who do not use language consistently - where ‘corridor’ and ‘hall’ are used interchangeably, at random. How can it be a corri’door’ when there are no doors?
Then there’s the practical matter - we live in an open plan house, where a ‘room’ may have two and a bit walls, undefined, not delineated by any visual boundary, no doors bar entry.
Part of the problem is that the name of any room is unimportant anyway – off radar.
Why is the garage a garage, when it houses a car not a gar? What about the kitch, what is it? When you leave, does it become a kitchout? Isn’t every room a family room? If you share bunks why isn’t it a bedsroom? It can’t be a spare room or guest room, and a day bed is a contradiction in terms. Only the garden is easy – out-side, enclosed by a ten-foot fence, with locked gates.
When they were little they didn’t have the words to explain the confusion. Now they do, and I’m the one that’s confused. We need a map for our own home, but we keep plodding onwards and upwards.
I sit on the floor with my youngest son, a pair, while the respite worker, Ms. G, sits at the table in the dining room – she’s six, stride-lengths away. Conversation is encouraged by not obligatory. I start:-
“Why don’t you tell Ms. G what happened to your sister yesterday?”
“No. You tell er.”
“I think she’d rather it about it from you. It was only yesterday.”
“Yesterday is being a very long time ago for my type of peoples.”
“What about all that drama? Tell Ms. G. She’s listening.”
“Don’t know drama.”
“Yes you do – when I had to rush off to collect her from school and take her to the doctor and you stayed at home and were very good because you used your emergency crisis behavior.”
“So? Tell Ms. G what happened, how she hurt her finger?”
“I don’t know. I weren’t there.”
“But we told you all about it when we got home again. Ms. G wants to hear all about it, from you.”
I look at his dead pan face.
“SIGH..Basketball is a blood sport?”
“Not that bit, anyway, don’t tell me. Tell Ms. G. Remember what we talked about? Being polite. When someone’s in the same room, include them, address them directly.”
“But she ain’t in the same room.”
I look across expanse, from the open plan sitting room, to the open plan dining room where a silent Ms. G observes and grins at me.
Sometimes I’m tempted to run away and hide amongst the filing cabinets in dad’s home off’ence.’
Sunday, March 07, 2010
On Their Own, Creating and Independent Future for Your Adult Child with Learning Disabilities and ADHD by Anne Ford published by Newmarket Press
Siblings the autism spectrum through our eyes edited by Jane Johnson and Anne Van Rensselaer published by Jessica Kingsley Publishers.
Stand Up for Autism by Georgina J Derbyshire, published by Jessica Kingsley Publishers
1. On Their Own, Creating and Independent Future for Your Adult Child with Learning Disabilities and ADHD by Anne Ford published by Newmarket Press, also author of 'Laughing Allegra.'
Why would I read a book about young people with learning disabilities moving into adult independence when my children are autistic and young?
Because I want to get ahead of the curve and learn from people who have already been there and done it, and because I have a secret agenda; I want to know how they fixed things, skip to the end and learn how they lived happily ever after, but of course that's where I went wrong.
Usually I can tell early on if I'm going to enjoy a particular book. Something to do with the tone, writing style and general approach, invaluable information to let me know if we're on the same wavelength.
Anne shares an anecdote, that hits just the right chord. She was called to jury duty, along with eleven other people, where naturally enough, the conversation turned to the subject of learning disabilities - we all know someone etc. It's a beautiful description of the frustration and inability to communicate with public at large - not mental retardation, not autism, not ADD, not ADHD - it's like trying to nail down jello.
The same issues arise with learning disabilities as they do with other spectrum diagnoses, we have so much common ground.
This book helped me recalibrate and look forward in a practical manner, examine our options and keep a common sense approach to what might be manageable; a fine balance between optimism and realistic expectations.
I particularly enjoyed the chapter on the topic of motivation, especially when you mix in the raging hormones of teenagers, closely tied into the nightmare of self esteem. I can definitely see myself utilizing some of those strategies.
Ultimately this book is as deeply frustrating as it is satisfying.
Because everything we are currently doing with our children to prepare them for an independent life in the future, it what we must continue to do. It's the old adage, 'a marathon not a sprint.'
So, buy it, read it, and keep it on hand as a visual cue to represent the goalpost - let's hope our aim is good.
Siblings - the autism spectrum through our eyes, edited by Jane Johnson and Anne Van Rensselaer, published by Jessica Kingsley Publishers
It’s divided into sections. Part I is for younger children and parents, and Part II is for teenagers and parents.
I thoroughly enjoyed 90% of this book - any less than that and I wouldn't write a review. It's a slim volume of 94 pages - not too daunting for young people to read and share with their friends. It is filled with the startling insight of youngsters with siblings on the spectrum.
They share their experiences with undoubted candor and display a degree of wisdom and compassion way beyond their years. Each speaks in their own distinct voice with anecdotes, and remarkable humor.
Some have strategies for coping and the common themes of embarrassment, frustration and love. They reluctantly accept the status quo, that their autistic sibling has the lion's share of parental attention - sobering.
The 10% I didn't enjoy?
You'll find it for yourself when you read it.
Not all siblings cope as well as others. I imagine this was an editorial decision. In some ways it detracts from the honest and positive outlook of this book, but it also serves as a stark contrast - those who learn, mature, grow in strength and develop a positive attitude, and those who struggle with inner demons and conflicts. Which is why I'm in two minds about it. If I were a sibling of an autistic person and read a book where everyone had learned to cope, but I was still struggling, it could be too daunting - 'how come they're doing o.k. and I'm not, there must be something wrong with me?' All the children and young people featured had difficult issues to adjust to, it wasn't easy, and they express common difficulties that we all share.
Not everyone has access to support groups, people similarly situated, or even internet forums, so what better way to find like minded people than in a book, in the privacy and security of your own home.
Stand Up for Autism by Georgina J Derbyshire, published by Jessica Kingsley Publishers
So here's the deal. You must buy this book, BUT you must NOT read it.
First an aside and then an explanation.
Georgina writes about her son Bobby who, as brief short-hand, has Asperger's Syndrome. Just writing those last two words has made 80% of people switch off, people whose children are sloshing around on some other point[s] on the spectrum - and that's a problem for me, so I must declare my bias.
It's a problem for me because one of my dearest friends has such a child herself. I was there when he was diagnosed, not in the same room, but there in spirit, after-wards and forever after. She has a much tougher time than me because the disability is invisible. People see what they want to see - a mouthy, know it all kid, who doesn't have any problems that wouldn't be sorted out by a quick kick up the butt, or different, better parents - it's divisive, even in the autism community itself.
And yet, because it's a spectrum, no matter where you're located on the continuum, common factors are there to a greater or lesser degree as a child develops, skips over some milestones, regresses to pick up a milestone they 'should' have mastered several years ago, leaps ahead to stranglehold a goal they shouldn't reach for another decade, and so it goes on, fast forward and rewind over the same scattered hurdles.
And now for the explanation - why you can't read it, yet.
Wait until the mail carrier arrives, peek inside to check it's the right book, not some other book you also ordered at the same time. Once you're sure it's this one, re-seal the envelope or package and run to your bedroom. Pick up the stack of books that you are currently reading or about to read and stick the envelope at the bottom of the pile and forget all about it. Allow several inches of dust to accumulate - that's the easy part for me - and wait.
You may have to wait a week, a month or a year, but you will know when your designated reading time has arrived. That time will be when you've just experienced an exceptionally bad day, part of which may be attributable to some element of autism, probably an exacerbating factor, to an already dis-functional day. When the day comes you have my express permission to lock yourself into your bedroom - sadly that probably has to be at night time when [hopefully] everyone is asleep - and then you're allowed to read it. It will be one of those nights when you'd like to escape into your favorite genre but don't really have the stomach for it. You're tempted to read some more research to see if there is some hint somewhere that might improve your families situation, but you're too tired to concentrate and anyway, you've had quite enough of everything including autism for today. So, now you get the chance to read something which makes you feel less lonely, inadequate and pathetic, because there's someone out there, Georgina, who also has similar experiences. Do you really want to read another self serving memoir about the misery of autism - no thank you very much - so instead you can enjoy a brief snippet of someone else's life with the added benefit of a huge dollop of humor.
It's short, 140 pages.
But that's exactly why you have to save it and savor it.
I'd also like to know who did the art work as my copy doesn't say.
So I made a quick check - what are the top ten "New York Times Bestsellers" in non-fiction? See for yourself "here," - an interesting spread but I don't notice any humor.
Humor, for me at least, should be in everyone's top ten. Don't get me wrong, I love Jessica Kingsley Publishers, my life line to sanity for many a long year, but if I could get my hands on Georgina, I'd surely wring her neck. I'd certainly give her a piece of my mind. I'd tell her she'd wimped out. She should be on the New York Times Best Seller list. Basically my unsolicited and unwelcome advice, after the fact, would be that Georgina should have held out – found an agent, someone who could hoik the manuscript to a big publisher, steal a huge advance and then sit back and watch copies of her book fly off the little shelf next to the Tic Tacs, chewing gum, batteries and cheapy, tempting toys, opposite the checkout, in every chain of grocery store, worldwide, translated into every language on the planet.