Read Sophie's Throughway Online
Authors: Jules Smith
Sophie's Throughway
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SOPHIE'S
   THROUGHWAY
JULES SMITH
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Copyright © 2015 Jules Smith
The moral right of the author has been asserted.
Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers.
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eISBN 9781 784625 849
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This book is dedicated to the people who live outside the box: the button pushers, the distinctive thinkers, and the pioneers of new directions. To those who refuse to be labelled as ânormal' and show those that live beside them how to stretch their imagination.
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Contents
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Chapter 1
“So you're saying I'm a retard?” Brendon challenged, his coat zipped right up to his bottom lip, arms folded and stinking of attitude.
“Brendon!” I scolded, “I've asked you repeatedly not to use that word. It's disparaging and inappropriate.” As usual I reddened, embarrassed at his misuse of language and feeling inadequate as a parent.
“It's just a word,” he replied, kicking a torn piece of paper on the floor in front of his muddy trainers, “everyone says it. Like they say someone's gay. Doesn't mean
they're gay
and gay is bad, it's just a word.”
“Well it's the wrong word to use for all the reasons I've explained!” I shook my head at the silent doctor in front of us to reaffirm my disapproval.
“It's OK Brendon,” said Kathy, the in house paediatrician. Actually, I didn't think it was OK but that wasn't what she was referring to. “Having Aspergers and PDA doesn't mean you have anything bad or seriously wrong with you. It doesn't mean you are stupid at all, you just see the world a little differently and may have trouble in social situations.” She spoke calmly and maintained a relaxed demeanour
unlike me; leant forward in my chair, arms crossed and pushing the balls of my feet into my shoes.
This was Brendon's first official diagnosis from a medical professional. For the last few years we had been through the inappropriate /unruly /rude /defiant and obnoxious personality descriptions from his teachers at school and pushed to do various tests from dyslexia to psychological profiling.
Although Brendon had been on a behavioural plan with the school Special Educational Needs team, they had called me in to say that he showed more than the
usual
ADHD traits and was definitely fitting the Aspergers profile. After thorough analysis it seemed they were right and here we were with a doctors diagnosis and a whole lot of bewilderment.
“Here's some information and some books to take home to help you understand autism better.” Kathy handed the books over to Brendon who gave them a teenage look of disdain.
“I'll look it up myself, thanks.” He stood to his feet and went to the door. “Come on,” he urged, glaring out under his black fringe.
“Thank you very much.” I smiled and took the books and leaflets from Kathy. That was it? A whole load of leaflets and a couple of books was all I was armed with?
Brendon didn't talk to me on the way back as I drove him to school. An uncomfortable silence filled the car.
How was he feeling about this?
It's one thing to know that your kid has social issues but to have an official label attached was
something different. This was my child, my perfect child.
“Are you OK?” my words sliced through the silence like an accusation.
“Yeahâ¦why wouldn't I be?” He remained looking forward, showing no physical emotion. But I was his Mum and I could feel it.
“We can go through this later, it's really nothing to be worrying about.” He remained silent. I didn't push it as I knew well enough when to stop. Although I had no real understanding of Aspergers or PDA, I had learnt over time how to read Brendon and when it was wise to let him be. He got out of the car without a goodbye and I watched as he sloped through the school gates, trying to hold back my tears at his obvious pain. I went home and spent the rest of the day reading every leaflet and as many online reports on the subject that I could find.
ASPERGERS:
People with Asperger syndrome can find it harder to read the signals that most of us take for granted. This means they find it more difficult to communicate and interact with others which can lead to high levels of anxiety and confusion.
Asperger syndrome is mostly a âhidden disability'. This means that you can't tell that someone has the condition from their outward appearance. People with the condition have difficulties in three main areas. They are: social communication, social interaction and social imagination. Whilst it falls under the âAutism' umbrella, people with Asperger syndrome have fewer problems with speaking and are often of above average intelligence. They do not usually have the accompanying learning
disabilities associated with autism, but they may have specific learning difficulties.
Yes that made a lot of sense and seemed to fit Brendon quite well. I then moved onto PDA, something I'd never even heard of before. Apparently, some doctors married the two together and some saw them as quite different.
PDA: Pathological Demand Avoidance:
People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can however be enigmatic and charming when they feel secure and in control. Many parents describe their PDA child as a âJekyll and Hyde'. It is important to recognise that these children have a hidden disability and often appear ânormal' to others.
Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.
And that description fit him even better. I leant back in my office chair and sighed. In one of the collection of leaflets I'd been given there was a form to be completed by the parents, giving their account or experience to help both medical staff and teachers deal with his behaviour and set out strategies that would help him at school and at home. I decided to fill it in there and then whilst I was still in an emotional state; tell it how it is from a Mother's point of view; what it
really
feels like to have a son whom you love to bits and yet cannot seem to control no matter what you try to do.
I took a pen lying on my desk and began to write.
Layman's terms from a Mothers experience:
Be prepared for strategic games at all times. If you can't play chess, learn it now as it will help. You have to be ten steps ahead and make them think that what you want them to do was their idea all along. This often doesn't work. Be prepared to be out manipulated and out smarted at every turn. Always be ready for inappropriate responses and behaviour; if your child thinks someone's got a big arse or he doesn't like them, he'll tell them. To others your child will seem like a cocky, obnoxious reprobate; sometimes you will think the same but you will also see the vulnerable person who can't cope with reality. Do not buy nice things for your house for they will only get trashed when he goes on a MELTDOWN. You will be shown an honest and somewhat refreshing individual who is full of wit and charm but you will also be taken swiftly from that euphoria and kicked into the detritus of despair. Know that you will be judged by those that are ignorant on the subject of autism and think you clearly have no concept of parenting. Have tools that enable you to cope in a crisis like: good red wine, comedies and excellent friends. And chocolate. Definitely chocolate.
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Chapter 2
At age fifteen and a half, Brendon was that wonderful mix of Aspergers and raging puberty that made you want to run away to a remote cottage in Cornwall or commit mass homicide. As only a Mother of an Aspie kid knows, the world just doesn't give you enough credit for the amount of hell you have to endure.
His sister Bryony was fourteen years old, going on twenty and though
also
teeming with hormones, was on the whole, a well behaved kid. Their Dad was Karl. Karl Rhodes. Sorry, I should say “Rhodes, Karl Rhodes,” because that's how he said it when anyone asked his name.
“Do you think you're James Bond or something?” I once asked as he delivered his moniker to a salesman.
“It helps people remember your name if you say it like that, Sophie.”
Karl was a very enigmatic man and a social chameleon. He could hold an audience with people from all walks of life and fit right in. Everybody loved him instantly. It seemed to be more important that everyone else thought he was marvellous than actually adopting the same princely behaviour at home, and though he professed
undying love and commitment, he did so like he was reading from a script.
Karl and I had children early on in our relationship, pretty soon after getting married. He
apparently
âloved kids' or so he professed and couldn't wait to start a family whereas I was more than a little hesitant. Turned out I was the one who found the all giving, life committing bond with our offspring and he found it all too much of a hassle and interference. Of course, Brendon's behaviour hadn't helped. Aspergers had a way of altering that idealistic, perfect family of four set up. Holidays were always fraught and more comparable to an endurance test rather than a relaxing getaway and life at home, was at most times, demanding and chaotic. It was difficult to stay a strong united front but even more so when you had opposing ideas and methods on dealing with Aspergic defiance and thuggery. Karl didn't buy into modern day labels and believed that harsh lessons and Dickensian methods always put people in check. The relationship between Karl and Brendon was always a slight groan off volcanic eruption and it didn't help that Brendon thought his Dad was a dick.
“What have you ever done for me?” Go on⦠name it⦠NAME IT!” Brendon shouted at his Father one Saturday afternoon. “Did you teach me to ride my bike? No, that was Mum. Did you ever stop to listen to how I felt? Noâ¦'cos you
think
you know everything⦠Did you ever spend time playing with me? No, not really. You've basically done
fuck all
as a parent!”
“Who do you think you are, you silly little boy,” Karl mocked, the Alpha male aggressor emerging, “I put food on the table, give you a house to live in and
you
are an abusive and cocky little shit!”
“Please don't say that,” I whispered harshly at Karl, “you're the adult remember, that won't help.” I'd read up on all the strategies of how to deal with defiance but seemed to be the only parent trying to put them in place.