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.


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Get out, Explore, and Have Fun, by Lisa Jo Rudy

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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Speak for yourself – I am not a conduit

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?”
“Can’t remember.”
“Can’t remember?”
“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.”
“Oh yeah.”
“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.’

Quite a long time ago, we used a lot of PEC’s. We still use them as scaffolding. You can buy them from lots of different place and make your own to be more carefully taylored to your own child’s specific needs, however, I can across a new place where you can buy them over here as part of the Autism Network – especially handy if you happen to be UK side.


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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.


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Medicine that won’t go down

It’s a common phenomenon for many of us with children on the spectrum – those pesky fine and gross motor skills, with a dash of scattered sequencing and a dollop of mis-matched motivation – a recipe for disaster if ever I heard one.

They come to the fore every mealtime to taunt and tangle with us. Although we persevere with cutlery my children insist that everything is finger food. Let’s be honest here, how many other parents, cooks and nutritionists also have to factor in ‘splash, spill and ping,’ distance into their calculations? But they keep getting bigger, so something must be reaching their intestines, one way or another. Just lately, it’s ‘another,’ because although they don’t conform to the conventional, they’re nothing if not inventive.

So if you find your dry Cheerios just refuse to co-operate with a fiddly spoon – this might prove to be a good alternative.

Sorry it’s been so quite around here lately but it’s a bit fraught with “Nonna.”


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Check mate – Fire breathing dragons?

I lean over him to help with the tricky zipper on his back pack, “so are you ready to play Draughts now that you’ve finished your homework and packed lunch?”
“Ugh!”
“What’s up?”
He shoves past me to dive to the sink, faucet on full flow, “jus a second coz I need water before I die from the smell.” He glugs several gallons before he’s ready to come up for air.
“What smell?” I ask as he wipes his mouth on his sleeve.
“Ugh! I can’t breathe!”
“Are you alright!”
“I fink I’m gonna faint.”
“Faint? Do you know what that word means?”
“Yes, it’s like dying but only temporary.”
“!”
“Aghhh!”
“Give me a minute, I need to close the seal on the snack bag before we start, don’t want it to go soft.”
“It is being your snack?”
“Yes.”
“What is it being? It’s being worse dan peanut butter poison.”
“The smell? Oh it’s Bombay mix, an Indian snack, I’ve not been able to eat it for…….years! I don’t think you’ll like it though as it’s pretty hot and spicy. ”
“You’re gonna be eatin with it ….again?”
“Yes, it’s my favorite treat now that my teeth are finally fixed.”
“O.k. but don draught on me.”
“Do you mean breathe?”
“Dat’s dah English?”
“Er…yes I suppose so.”
“Don’t Draught on me when we play Checkers.”
“!”


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An Experiment

It is a well documented phenomenon:-

a youthful individual has a mishap on the play-ground and the autistic child nearby laughs.

Remember that one?

We could of course go into lengthy explanations as to why this should be so, sometimes, with some children – how some emotions, or rather the expression of those emotions, can flip over to their exact opposite – a trip switch.

Frequently, these explanations don’t ring true.

This is usually for one of two reasons.

The first reason is when the speaker uses too much jargon, so the listener falls asleep from boredom, not that they were very interested in the first place.

The second, because the explanation is too simplistic, just not good enough to be convincing.

Anyone you know still need convincing?

Here’s my version of convincing.

A small autistic child is depressed – bear with me here, I know few people believe depression is possible in a child – a credibility gap – but it really is true.

So, where were we?

Ah yes, a small sad person comes to you; they’ve been encouraged to express their emotions, not bottle them all up. The small sad person has acquired words, lots of them. The delivery is often a bit dicky but it’s still a vast improvement. The listener must be patient as the child gains confidence, builds up to the moment. They cannot be hurried. Use prompts judiciously. There may be several false starts and sputters. There can be many ways of expressing hurt feelings, feelings of self-loathing and poor self esteem – many parents are familiar with these too. ‘Negative talk’ is another common phenomenon in autism. Because they are children, the terminology may differ from adult versions on the same subject. The listener must adjust to age appropriateness, calibrate carefully, tune in to any special areas of need. It’s a serious business for us, as we wallow in his ‘cat phase,’ of development, no jokes allows. We must step into their shoes, see the world from their perspective, their sensitivities. Under no circumstances should the child’s concerns be trivialized, dismissed or belittled, no matter what. Sincerity and an open mind are essential elements of being a coach to the sufferer in their time of need, so that when that sweet innocent appears before me, lifts his fragile chin and turns his pale liquid eyes towards mine, fear, pain and suffering etched into the tiny creases at the corners, beneath a curtain of silky dye cut hair and parts those soft cherubic lips to announce:-

“I’m …..I’m …bad….real bad…..really, really bad…I’m as bad…..as bad ……as bad as a pile of dog poo!”

Don’t you dare laugh.


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Contractions can be tricky

I nip upstairs to check progress, or lack there of.  He stands in the middle of the bedroom, without stitches, surrounded by every shirt he owns, piled up on the carpet in heaps the size of  earthworks, as well as his brother’s, a solid mass, indistinguishable, an impenetrable mountain range.  But that’s only in my mind, an exaggeration, really there’s only half a dozen.  It’s a metaphorical mountain and a distraction to the main event.  The main event is to have my son dressed and sequenced through his daily routine in time for the school bus.  However, this goal may be hijacked by other competing campaigns: self-care, personal responsibility, natural consequences for actions.  I dither.  I estimate that on a good day, without any other distractions or pressures, it would be possible to put one, maybe two shirts back on their hangers and into the closet, but that has to be balanced against the amount of time expended on a task that’s unlikely to be completed, could well result in major upsets and quite possibly destroy any possible of the first goal – ready of the bus.  Speech and communication has always been the priority, reduce frustration, enhance understanding, but they’re bigger now, in a different place, way further along the road, and someone keeps moving the goalposts. In the midst of my indecision, he speaks.

‘It ate my shirt.’

‘I beg your pardon?’

He holds a tan colored top in one hand, blinking at the design on the front.

‘It ate my shirt.’

‘What are you saying.’

He flaps it towards me, but I’m a bit slow on the uptake distracted by his feet trampling the other clean shirts strewn across the room.

‘It ate my shirt.’

‘Who……or what ate your shirt?’

It’s almost a dance now as he travels around the perimeter waving the shirt.

‘It ate my shirt.’

‘That’s what I thought you said.  Doesn’t look like it to me.  You’re saying that this shirt, ate your other shirt, or shirts, or what?’

He stops for a moment, still, static and startled, as something clicks into place.  He looks at the shirt and then at me.

‘Oh no, I meant…….it’s her shirt…..it ain’t my shirt.’

‘Fabulous.  That’s much better.’

So  stunned by the percolation of the missing ‘n,’ I leave stuffy shirts for another day.  [diction]


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Notable Quotes and a quickie

My daughter to her little brothers:

‘You guys are just impossible!
‘No! We’re not guys! He’s a cat and I’m an “Uglyworm.”

My son – after a long, tortuous and circular argument:

‘I am Mister Understood.’

At breakfast, before I am truly awake:

‘You may wish to get some more cereal from the garage, the choice is a bit lean.’ He doesn’t move but continues to stare at the cupboard. I watch him and try again, with far too many words, ‘I’m sure there’s some new packets out there, pretty thin pickings in here.’ He remains rooted to the spot as he slopes into a 65 degree angle with his cheeks sucked in, although its unlikely to make him any skinnier.


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The enemy of my enemy is my friend

We survive the drama of the ripped hang-nail and a micro bead of blood. His wounded hand hides in his pulled down sleeve for protection, as his other hand crushes the blood flow.
“Which are you be likin betterer?”
“What’s my choice?”
“Anna….annanem….ammanemoni!”
“Anemones, the flowers?”
“Dey are be lookin like flowers but they are being dah sea creatures.”
“Oh. Of course you’re right, Anemones are animals.”
“So?”
“Hmm?”
“Which are you likin betterer?”
“Anemones or what, what am I choosing between?”
“Nude….nude…. Nudibranchs.”
“Fancy you remembering Nudibranchs! The enemy of all free thinking Anemones.”
“They are predators.”
“So I’m choosing between Anemones and Nudibranchs?”
“Right.”
“I think I prefer Anemones to Nudibranchs.”
“Good.”
“Why?”
“Coz then you are on the right side.”
“The right side of what?”
“You’re one of the good guys.”
“I am?”
“Yes.”
“Why am I one of the good guys?”
“Coz Nudibranchs are dah enemy, predators.”
“Anemones are beautiful. Did you know they’re called the flowers of the sea? Such lovely colors. I can see why you like them. You’ve always had a fondness for flowers.”
“!”
“You still love flowers, right?”
“I love Daisy flowers but I like Anemones because they’re invertebrates and…..”
“Yes?”
His face glowers as he growls, Boris Karloff style, “ and they’ve vicious carnivores,”.
“!”
He releases the grip on his hand so that the fingers can wiggle free from the fabric. He examines the damage to the digit closely, without the use of a microscope,
“and if they lose a tentacle, they can grow a new one.”

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