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.

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.”

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.

‘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]

‘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.

My son, the birthday boy and host is busy, occupied, as we order our drinks in the restaurant. His friend makes two strenuous attempts to request a beverage from the server. His voice is as clear as a bell and quite as piercing, but the message has failed to penetrate. I intervene:- “yes he’d like half Pepsi and half Sprite please?”
The server is perplexed and distracted as he mines for information. From a distance we look like any other party of 12. Close up, it’s different. It takes a different format in each child. Collectively it can be disconcerting. It’s as if we each have three heads, fluent in Swahili.
“Er?”
“Can you do that? Mix Pepsi and Sprite in the same glass please?”
“Er….well…..um?” Throughout our exchange, our young friend repeats his request in a loop of ever increasing frustration, since my translation appears equally as useless.
“Do you think that would be ok.?” I ask as I try to arrest the server’s attention.
“Is he er…..does he…….is he…….does he have…..special needs?”
“Yes Sprite and Pepsi, mixed in the same glass please, special order.”
“Right.” He disappears without a murmur, to return shortly afterwards. We go round the table for the food order, until we reach our same young friend, “chicken nuggets please and no fries.”
“Would you like fries with that?”
“No fries.”
“It comes with fries. Would you like fries or one of these other choices, see at the bottom of the page?” Persists the server.
“No fries.”
“Would you like something else?”
“No, no fries.”
“You don’t want fries?”
Our young friend turns to me for full on eye contact, the faulty conduit, gives up on the server, to explain what should not need any further explanation. With an electrically charged tone of voice that carries over 10 tables in the noisy restaurant, “don’t give me fries, don’t give me anything with potato products or I’ll vomit.”
The server flinches, stabs himself in nose with his pen – a gasp and a laugh of relief as he skuttles off to the kitchen with mirth. My daughter watches him leave without initial comment, until she is quite certain he is out of ear-shot, “I never thought you need good listening skills to be a server.”
“It a much more highly skilled job than most people realize, at least if you want to do it well.”
“I wouldna believed it if I hadna heard it for myself.”

I looked.

There were my toys, quite a lot of them. My little brother’s toys were scattered without any noticeable order – very messy. There was my teenage sister’s paraphernalia; boring stuff with very little entertainment value. My Dad’s papers, books, stamps, albums and equipment were neatly arranged on a small collapsible table, poised in front of his winged backed chair. Next to it was my mother’s winged backed chair, because they were a pair. On and around her chair were masses of bags and boxes, with a side table at arm’s reach. Every surface was piled high with knitting, embroidery, darning, mending, many books on a wide variety of topics, all open, not even stacked – a veritable mountain of mess.
“Shall I tidy it?”
“Yes you will!”
I stood alone in the room for a moment, pondering my mother’s lair. What, if anything, could be squished into something else? It was just as I was jamming the knitting into the basket that my mother returned and squeaked, “mind!” but I was ahead of her, I had no intention of impaling myself on the needles. “What do you think you are doing?”
“Tidying.”
She shooed me away as you would a chicken, flighty creatures renowned for their small brains. “For the last time!”
Last time?
“Will you pick up your toys?”
My toys?
Well why didn’t you just say so in the first place and I might have acquiesced to your unreasonable demand, I’m nothing if not helpful.

It’s my turn now because I’m the mum. I often misjudge – forget. Sometimes it takes me a couple of attempts. It’s usually just when I’m about to blow my stack with exasperation that I remember.

There’s a lot to be said for specificity and logic.

Without pausing for breath he’s off on another tangent.

“Ooo dats bad.”
“What’s bad dear?”
“Dat white stuff in yur hairs.”
“Ah, yes it exploded – I was lucky not to get burned.”
“Yuck it smells even badderer.”
“Yes, acrid charring is never pleasant.”
“Ooo dere is being dandruff all over your body.”
“I think I may as well give up and change, maybe shower.”
“Dere is being snow all over the kitchens – it is being like a winter wonderland!”
“You would never think that three exploding Chestnuts could do quite so much damage really.”
“Armageddon……..but smellier.”
“!”
I step to one side to retrieve the dust buster as my daughter skitters into the kitchen to whisper to her little brother, although not quietly enough:-

“Cun you remember what Mom said she’s cookin tonight for dinner?”
“Yes.”
“Well? What’s she cookin then?”
“Bad.”
“No. What’s it’s name? Chest Nut what? If I ask again she’ll have my guts for garters.”
“No. Not guts. I seened it wiv my eyes.”
“So what is it then?”
“Smashed to smithereens………….dah brains of small dead creatures.”