I have moved over to WhittereronAutism.com. Please follow the link to find me there. Hope to see you after the jump! :)
Showing posts with label spectrum. Show all posts
Showing posts with label spectrum. Show all posts

Sunday, March 07, 2010

Three Book Reviews



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.

Why?

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.


2.
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.

3.

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.

Aside -

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.

Too short.

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.

Monday, July 30, 2007

Word play














I have been known to complain about my boys. It's fair enough for them to have different personalities, characters and preferences, but I would much prefer it if their version of autism could be the same too. [translation = parental convenience] Because autism is a spectrum disorder, I often forget that whilst they have little in common, there are residual similarities that can flare up without warning.

My youngest son has an obsession with death, dying and the fragility of human life. As a result of this, we are careful to avoid the subject. It’s not that we are not happy to discuss the issue in general terms. [translation = and have done many times] It’s more when a word, or an association with that trigger word, slips into an otherwise ordinary conversation, that trouble soon follows. Whilst we have touched on this matter before, I do not expect mortality to attack me from other sources.

My older son as waited nearly 18 hours for his sister’s gift. In his mind’s eye, he has anticipated that she would buy him a ‘transformer,’ whatever that might be? He has been told, often, that it will not be a ‘transformer.’ Instead it will be something cheaper, probably something he will not like. We have told him this frequently, reminded him of his impending disappointment, since his sister’s financial base is modest.

Her delight in being cast as the ‘giver of gifts,’ has only served to heighten the excitement. [translation = for everyone under the age of ten] For her, a gift, any gift, is a gift. For the boys, any gift, that is not a specific gift, is not a gift at all. In fact, not only does it cease to be a gift, it changes into an object of hatred.

It is hard to dampen my daughter’s enthusiasm. [translation = I don’t really want to, but I must, so that she in turn, will be prepared to have her gift shunned, her feelings hurt and cope with the disappointment]

It all happened so quickly, during the daily debacle, more commonly known as dinner. The noise is deafening, but fortunately we are in the garden. [translation = polluting our neighbours’ peace] My anxious daughter needs reassurance too. We confirm that after dinner, we will take her to the shop to buy the treats for the last day of soccer camp. The boys will remain at home and go to bed. [translation = status and pulling rank as the eldest] Whilst it would have been preferable to reassure her out of earshot of the boys, sometimes you just have to take the heat.

The boys’ protests rise a decibel or two at the outrage of exclusion.
“Boys! BOYS! BOYS!” she bellows with her hands raised high to catch they’re attention. They stop. [translation = the magical powers of siblings] “Howsabout I get you a prize whilst I’m there? Wouldn’t that be great? Would you like that huh? I’ll buy em with my own money, so it’ll be kinda little……..but only ……if you go to bed nice.” Her face is spread with a cheesy grin. [translation = so is mine] She bounces out of her seat and hugs me where I sit. [translation = the girl done good!]

So how can I burst this bubble? [translation = cigarette burns on a kitten] I have to deflate her a little, to take the edge off when they burst.

I take several opportunities during those 18 hours, to remind the boys about how to behave when you are given a gift that you hate. Since 99% of the gifts they receive fall into this category, they have had a great deal of practice.

Finally, her moment arrived. She presents herself with a flourish, clutching her Target bag to her chest in her hot little hand. She is ecstatic with anticipation. She sinks her hand in to whip out two little sets of cars, the kind that children are often given in party favour bags. Junior snatches his and disappears, shouting ‘thank you’ in response to my prompt to his rapidly retreating back. My other son points to the words on the packet, wordless. His sister reads them for him, even though he knows what it says: ‘die cast cars.’

His scream could shatter every window in the house, as he grabs the packet and hurls it as far as he is able. My daughter is horror struck. My son collapses on the floor to beat it with his fists and kick the hardwood floors as he howls. I settle my daughter with Nonna and concentrate on my son. [translation = before he damages himself]

He remains incoherent for some minutes. Now he is eight, he is big. Now he is eight, he is strong, but his anger is usually internalized. [translation = self mutilation] I stay close because his injuries are swiftly inflicted. The minutes tick by as we wait. I did expect a negative reaction, but not of this magnitude. Slowly his body relaxes. The growls turn to sobs. When he lifts his face, I see fear not anger. I continue to massage his back as I await the return of words. Eventually, they come:
“She is not my friend?”
“Of course she’s your friend! She loves you!”
“She wants me die?”
“Pardon?”
“She give me a toy to make me die?” Oh no, not him too! Is it contagious, this OCD fixation on death.
“Die can mean lots of different things. It can mean colour.” His eyes follow my finger as I point out all the different fabrics in the room, all their different colours.

I help him to his feet and lead him to the kitchen. I pull out an ice tray. “You can mould ice in this tray. If I put metal in it and the mould was shaped like cars, I could mould cars. That kind of moulding is called ‘die’ cast.” He looks at me dubiously, as his little brother bounces in, the little letter lord. His arrival gives me an idea. [translation = treason. Please don’t deport me. I’ll claim insanity and win.]

“Do you know what?” Both snap back with ‘what?’ Hallelujah! “When something isn’t alive, that's ‘die.’ All these other kinds of ‘die,’ making toys, colouring fabrics, that’s a different kind of ‘die.’” I double check that I have everyone’s attention. Miraculously, I have everyone’s attention. “You call it ‘D,’ ‘Y,’ ‘E.’ Not the same thing at all. See?” I waggle the ice tray with one hand, and flap my skirt with the other. Both boys’ eyes travel from one to the other and back again.

I wait.

One shrugs his shoulders. The other offers, “I fink I am liking ‘dye.’”

Both scamper off without a backward glance.


I only wish my ‘OFF’ and ‘ON’ switch, was as efficient as theirs. [translation = bad gene pool]

If they had glanced back, they would have seen a haggard old woman, trembling against the kitchen counter. I suspect that I shall pay for this crime of corruption, later in the school curriculum.

Post Script - I offer my humble apologies for my somewhat erratic visits to all your blogs, but now we are on Summer routine. [translation = a contradiction in terms]
Just in case you missed it, your reward for waiting for this blog to load and if you would prefer a blog that "loads like a dream" I am now a duplicate over "here." [although I'd rather have a few real clones than a mere duplicate]

 
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