Whitterer on Autism

Yesterday I had a bit of a flip out when I found I’d lost 11,000 words from my file.

But no longer…….new external hard drive!

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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And don’t forget to add your name to the “book giveaway.”

I don’t know about you but at this time of year I like to kick back a try a little escapism in my summer reading. So I’d like to challenge you to step into someone else’s shoes, just for a couple of hundred and sixty three pages. Generally speaking my first choice would be a whodunit, preferably one I can solve myself well before the end but not too soon after the first few chapters. That’s my kind of escapism from what I am apt to call ‘my miserable existence.’ Although I call it that, it’s because I love a good moan and I am so exceptionally good at it too. I could take up grumbling professionally, a second career and then rub my mucky hands on the glass ceiling when I bump my head on it. That said, every once in a while you come across a life changing story, like Vicki Forman’s ‘A Lovely Life, a memoir of premature motherhood.’ If you should happen to come across such a story it can be sobering to realize that it’s not a story, it’s true. If you read a true account of someone else’s life, even if you are an expert moaner, it may just be that you might gain a different perspective on your plight. I did. Will you?

If you would like the chance to win a free copy of Vicki’s book, signed by the author herself, all you have to do is read the “review” over “here” and leave a comment there, or here as the linky thing is bust. I’ll send them all along to her together with the winner’s name to be announced on Tuesday 1st September. You could invite your chum to join in too, you know the one, the misery guts who never has a good word to say about anything.

Wouldn’t that be subtle?

This might be a good one to stumble or tweet to help spread the word, should anyone feel so inclined?

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

A bit of a book recommendation for any budding artists that you might happen to have skulling around your home:-

Here’s where we are now.

It has a whole section on facial expressions which I highly recommend for obvious reasons.

If you have any advice or experience of “elder care,” “Nonna” and “I” would be most grateful for your input.

Firstly I must declare my bias. In recent years I have come to love the genre of the short story. “Kelly’s” delightful book is a series of vinettes. Perfect bite sized pieces of autism. Easily digestible in small doses for those of us who are short on time. My copy is the “revised” edition. I imagine that many of them could be read independently and out of sequence as each one stands in it’s own right. I’m guessing of course but I can see how these pieces could easily be read aloud. In ‘A will of his own’ the author’s melodic tones capture snapshots of her son from his early days and onwards as he grows and develops into a young man. It’s no accident that Kelly is a “musician” as her voice as a writer comes over as a warm and affectionate melody. To be frank I find it difficult to be dispassionate and impartial about the subject of autism because of my own personal experiences. However, I believe Kelly’s writing style clearly exposes a picture of her son that is accessible to everyone. I have a keen eye for jargon and technical language as it can be off-putting to those not in the know, but her words and use of language merely flowed to tell a story in context. It is a slim volume full of delicate, poignant insights but with the strength of powerfully honed reality.

It is available from “Jessica Kingsley Publishers” and “Amazon” just to name just a couple.

Spoiler:

This is not a book where everyone lives happily ever after.

If you write and publish a book about your personal life you automatically expose yourself to criticism. If you write an accurate and honest account of your personal life, warts and all, you expose yourself to even greater criticism. So I shall be the first to launch the attack.

But let’s back up a bit. Let’s be frank here. There are so many books on the subject of autism, a deluge, that it’s sometimes hard to spot the good ones. These days I positively avoid reading anything about autism as I am heartily sick to death of all the tales of woe and misery. I also dislike warped distortions of autism where everything is fun and games. I’m looking for balance and realism.

But I digress. Back to Laura and her book “A Regular Guy,” growing up with autism, a family’s story of love and acceptance.

It’s a promising start.

The book starts at the beginning and the story gradually develops chronologically but before too long, it becomes all too obvious:-

Laura is a big ol’ cry baby!

There!

It seems that every few pages she bursts into tears. She doesn’t know the meaning of ‘emotionally repressed,’ or if she does, she certainly doesn’t put it into practice. But that’s because Laura is a good sharer and a truth teller, a fairly heady combination. Bear in mind that every few pages represents a skip in time which considerably reduces her ‘year per weeping ratio,’ especially if you compare it to her ‘laughter per day ratio.’ She has cartloads of that too. More importantly, her ready wit, private asides and singular voice must surely touch even the most callous of readers, such as myself.

I suspect I know the reason why Laura is apt to blub so often. I’d posit an idea that doesn’t receive much air time. It goes like this:- you become a parent of a child and have great expectations. Sometime after that you become a parent with different expectations. Sometimes that transition merely warrants a one liner for some parents.

Good luck to them.

Others share their journey of a life time, in many chapters. As often as not, this is captured in the term ‘emotional rollercoaster.’ Thus far all is well and good, within our range of comprehension. The bit that’s left out, is the everything else. Everything else isn’t just family, friends and community, it is just that, the everything else. The autism experience does not exist in a vacuum, the roller coaster is in full swing, but the world keeps turning. There are jobs and careers, commitments, finance, paperwork, all the daily detritus of life either piling up or dealt with. Either way the pressure is on and doesn’t let up. The cliché of the human existence is that at the end of the day we dwell upon the things we did not do, or the things we could have done better or that we did badly, before it all begins again the next day. These days go on forever because we cannot escape life to focus on autism exclusively. Autism has to fit in with everything else and often it doesn’t.

It is the ability to live in these two worlds at the same time, to help them fit together better that takes determination, strength and stamina. This is what parental responsibility is all about, we have to be grown ups. As grown ups we juggle all these different things, we manage, and some people excel. In the midst of the permanent juggling act, something additional falls into the mix, something tiny, something huge, something unexpected and you have a choice, burst into tears or laugh your head off. The ability to do either or sometimes both, is the path to survival and Laura demonstrates this with perfection. It’s hard to encapsulate life with autism, but this may be as close a picture as possible.

Spoiler :-
This is a book were everyone continues to live their lives to the fullest.

Available from “Amazon” with more details “here.” Here’s a less biased “review.”

A memoir of premature motherhood

I have done my very best since day one to consistently complain and grumble about autism. Indeed I would go so far as to suggest that I have reached a certain degree of expertise on the subject, on moaning that is, rather than autism.

I remember quite clearly the moment that my world fell apart. It happened on quite an ordinarily autistic day in the park, when all of a sudden my son fell out of the play structure onto his head. As he vomited in the Emergency Room and they wheeled him away for an MRI the nurse told me to ‘brace myself.’ Instead of having an autistic child I was threatened with a replacement, a seriously physically and mentally ill child. Without question it was the most sobering moment of my life.

When the nurse returned, much, much later, she told me she had never seen anything like it, outstanding, remarkable. In all her twenty years as a nurse. He was back from the brink. I had aged a hundred years in those blank, bleak moments. I should never wish to experience anything remotely like it again, ever. After that shocking episode we went on to enjoy robust health and live happily ever after. I cannot conceive of enduring that amount of mental energy for years as Vicki Forman and her family did, when their twins Ellie and Evan were born prematurely. Not only did she experience this pain but she also wrote about it in her book “This Lovely Life.”

I found this a harrowing account of tumultuous chaos but thoroughly absorbing as a reader. It is a tribute to her outstanding and formidable writing style that her book, however ironically, is a true page turner. As a reader, we are safe in the knowledge that the experience of pain is vicarious, not real for us, surreal for her and yet we are drawn further and further in to catch a glimpse of suffering that no-one should ever have to live through. It would be tempting to describe this book as an unrelenting tale of misery but that would be both untrue and a distortion. Every time you think that things cannot get any worse, they do but that is very far from the whole picture. Somehow, by some mercurial quality, Vickie relates their triumphs with pin pricks of startling light that keep us ever hopeful.

My one criticism is a personal one. The book is sprinkled with extracts from the journal she kept during this period of her life. I do not understand why journal entries should be any more poignant than any other writings that create a book but to read those entries was somehow even more excruciating. Maybe it is because reading someone’s memoir appears to grant the reader the permission, provides justification however spurious, to be a fly on the wall, but to read lines from a diary confirms that the reader is an interloper, peeking at someone else’s privacy, a true voyeur.

That said, I should like everyone to read this book, everyone like me and everyone who is different from me, but how to make that happen?

I decided to canvas opinion, male opinion. I asked my husband, a non reader if ever there was one, what drew him to read his annual book? The last book he read was ‘Kon-Tiki: Across the Pacific in a Raft’ by Thor Heyerdahl. Six men on a small raft sail four thousand miles across the Pacific Ocean, from Peru to the Polynesian Islands. I’m inclined to ask ‘why?’ Why set sail in a raft, a small one at that? Why write a book about it? Why would anyone want to read about it? So I ask him my ‘why’s?’
“Because it was a real life and true challenge, because the story was enthralling, absorbing, thought provoking.”
“What if they hadn’t been successful? What if they’d failed? What if the raft had sunk or someone was lost at sea? If tragedy had befallen them, would you still have read and enjoyed the book?”
“Yes?”
“And I know why, because it’s the journey my friend, the journey and that journey will haunt me for a very long time.”

You may wish to read some more about this “book” which you may do so here at “Fully Caffeinated” where “Carrie” asks “Vicki” a few interesting, previously unasked questions. There is also another independent interview on “Hopeful Parents” by “Christina Shaver.”

p.s. There is also a brief interview of Vicki on “ABC.”

p.s. I’ve just added the ‘link box’ code today [Tuesday] but obviously the previous commenters are already included.

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Now this made me very happy after I’d stubbed my bare feet on heaps of abandoned bricks. But I couldn’t work out just why they were underneath the table in front of his seat.

Then I shifted gears:- Brake, clutch, accelerator.

“Nonna” and I are gaining “ground.”

And where would that be I wonder? And I wonder a lot. There’s a lot of wonder around because we are currently enjoying an abundant harvest of words and phrases. Complicated words and a lot of pithy phrases. As often as not, it’s quite enchanting. I consider myself to be a reasonable conversationalist, given ideal circumstances, but when the ideal circumstances evaporate I find I am on more tricky terrain. The trouble with conversation is that it is so interwoven with social skills. You can have all the right words but unless you’re good at sewing, the effect can be very patchy, though none the less charming.

So we are busy, early in the morning, when words often flow more freely. I gather the troops for breakfast where a heated discussion ensues regarding the inferior menu. I am in mid sentence when my son interjects, “so mom?” I pause for breath and look at him because his eyes and attention are upon me. Such a treat.
“Yes dear?”
“So…….since we’re on the subject of clay….”
Clay? But it’s such a perfect interruption, just the right tone, just the right bright inflection, flawless. “Meet Claydol!” he flourishes as he whips a Pokemon trading card into my field of vision. Sold to the mum with feet of clay in fluffy slippers.

I hold it up so that all 5 of the adults in the house have a clear view.
“See this?”
“Yup. What about it? What is it?”
“Guess?”
“It’s a hose…….vacuum hose.”
“Right.”
“So?”
“If you see it anywhere, anywhere at all, nab it. I need it.”
“?”
“I can’t keep the dog hair and car fur under control without it if the asthmatics are going to survive another 24 hours.”
“?”
“He keeps swiping it. Pulls the hoover out of the closet and takes off the hose.”
“Why? What on earth is he on now?”
“It’s his tail.”
“Tail?”
“He’s still ‘part cat.’”
“What has being ‘part cat’ got to do with taking the vacuum hose?”
“He’s morphed. No longer is he ‘part cat’ now he is ‘robocat. Teamwork! A united front! I need your help!”
“Hmmm…….. pity you can’t whip out his battery when he’s not looking!”

p.s. dear chums and pals, I have searched in vain for blogs where people’s lives are affected by “Alzheimer’s” or “Dementia,” admittedly briefly, and do you know what, I can’t find any. A long time ago I doubted that there were any blogs about autism, but of course there are loads. If you happen to come across any blogs on the former topic I should be most grateful if you could tip me off / give me a shove in the right direction as we all know that the support of an online community is a big boost to the morale.

I coax my son.

“Have a go. You may just like it.”
“Bleah!”
“I know you don’t like butter but this is different.”
“Bleah!”
“It can count as your new food for the day if you like?”
“Bleah!”
“That’s vinegar. Remember you like salt and vinegar crisps now?”
“Bleah!”
“You could have this instead of butter, every night.”
“Bleah!”
“It’s so much better for you.”
“Bleah!”
“And it will help fatten you up.”
“Bleah!”
“I thought you said you wanted to be fatter? Didn’t we agree?”
“Bleah!”
“Just dip the corner of your bread in. You don’t even have to get your fingers dirty.”
“Bleah!”
“I don’t understand? I thought you were willing to have a go?”
“I wuz.”
“Great! Off you go then.”
“Not now.”
“Why not now?”
“Because……it is different now.”
“What’s different now?”
“Dah oil and dah vinegar.”
“What’s different about them now than when they were in the bottle?”
“Dah shaping.”
“What shaping?”
“It’s bad.”
“What’s bad?”
“MOM!”
“Yes dear?”
“Don you get it?”
“Er…..no……no I don’t get it.”
“I cannot be eating of dah parallelogram.”
“!”

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.