Sophie Walker - Grace, Under Pressure: A Girl with Aspergers and Her Marathon Mom

Praise for Grace, Under Pressure

Lets be honest. This isnt the first first-person account of being a mother of someone with autism. It joins a veritable parade of such accounts, published in recent years. It is, however, one of the best.

The book details all the recognizable parental experiences along the way the confusion as a much-loved baby reveals herself to be different from her peers, the struggle to get a diagnosis, and the disappointing feeling that the diagnosis in itself perhaps doesnt solve much. The sibling challenges, the playground bullying, and the lack of understanding from well-meaning friends and family are all here.

Communication, official magazine of the
National Autistic Society (UK), www.autism.org.uk

Incredibly moving and inspiring. A mother always wants whats best for her daughter, but this mum has to really fight and run to get it.

Ruth Field, bestselling author of
Run Fat Bitch Run and Get Off Your Ass and Run!

A powerful account of how exercise can restore you physically and mentally.

Top Sant Health and Beauty

GRACE, UNDER PRESSURE

Copyright 2012 by Sophie Walker

All rights reserved. This book may not be reproduced in whole or in part, stored in a retrieval system, or transmitted in any form or by any means electronic, mechanical, or other without written permission from the publisher, except by a reviewer, who may quote brief passages in a review.

First published in Great Britain in 2012 by Piatkus, an imprint of Little, Brown Book Group, 100 Victoria Embankment, London EC4Y 0DY

A Hachette UK Company www.hachette.co.uk www.piatkus.co.uk

Some names have been changed to preserve anonymity.

Text design by Tona Pearce Myers

Library of Congress Cataloging-in-Publication Data

Walker, Sophie.

Grace, under pressure : a girl with Aspergers and her marathon mom / Sophie Walker.

pages cm

Includes bibliographical references.

ISBN 978-1-60868-225-6 (pbk. : alk. paper) ISBN 978-1-60868-226-3 (ebook)

1. Children with disabilitiesFamily relationships. 2. Parents of children with disabilitiesAttitudes. 3. Child rearingPsychological aspects. I. Title.

HV888.W35 2013

362.3092dc23

[B] 2013014706

First New World Library edition, September 2013

ISBN 978-1-60868-225-6

Printed in the USA on 100% postconsumer-waste recycled paper

New World Library is proud to be a Gold Certified Environmentally Responsible Publisher. Publisher certification awarded by Green Press Initiative. www.greenpressinitiative.org

10 9 8 7 6 5 4 3 2 1

For my big girl, the grace of my heart,
and my little girl, who brightens my days.
And for my husband, who always said I could.

CONTENTS

Imagine that you have a child whom you love very much. Now imagine that you go to collect this child after work every day. Now imagine that every day when you pick your child up her first words to you are: Do I have to clean my teeth tonight? Regardless of what you say to your child yes, yes of course, yes, just like last night, yes, because otherwise youll get sore teeth, yes, you know you do, yes, everyone else does, yes, weve been through this, yes, come on now, dont be silly your affirmative response will prompt anything from twenty minutes to two hours of negotiating, arguing, shouting, tears, temper tantrums, or hysterical meltdowns. By the time your child has brushed her teeth, you are both exhausted and swear to each other that it wont be like this anymore. The teeth will get brushed, you wont shout, youll both be friends. You hug and kiss, worn out.

The next day you go to pick up your child and the first thing she asks you is: Do I have to clean my teeth tonight?

This is what evenings with Grace are like, except that her question is: Do I have to do my homework tonight?

To be clear: Graces teacher does not give her masses of homework. What she does give her amounts to about half an hour on four nights a week. I am glad the school gives her homework. I think its necessary for her to learn, its a good discipline, and much of it is enjoyable.

But the daily task of getting her to accept that shes got to do it is driving me mad. That sentence doesnt do justice to how it feels. Its not just mad like: arggh, this again. Its mad like proper, ancient, deep-in-the-brain lunacy. Its mad like the dark places where poets and criminals and people in scary films go. Its mad like Sylvia Plaths wild, bald moon and the Jokers rictus grin.

Sometimes I feel like running out of the house even as Im thinking how much I missed her while I was at work.

Today, to calm myself as Grace raged, I counted up the number of days left on which I have to do this. Its two weeks till the end of term. There wont be any homework next week and most of this weeks is done. So really Ive probably only got one more night of this. I calculated that so far this school year we have had homework negotiations on 196 nights. No take off Fridays thats 156 nights, or 156 hours, if I average out the length of time we reason or row; 6.5 days. So nearly a week of madness.

Put in that context, Ive had another fifty-one weeks that are better.

So what am I complaining about?

The conversation about homework is really nothing compared to the process of doing it. Or getting Grace to do it while I supervise, simultaneously wrangling two-year-old Betty and cooking the dinner and clearing up, which is usually how it goes.

This is no fun, but its a lot less no fun for me than it is for Grace.

Grace hates homework with more than your average nine-year-olds passion. She hates it because she knows shell either understand it with a glance and do it in under five minutes (this applies to story-writing, grammar or spelling exercises, and any kind of drawing) or she will not understand it (math, reading comprehension, any instructions that the teacher hasnt calmly explained several times before Grace brought the worksheets home) and so spend the next hour in a panicky fog of incomprehension.

Tonight it was mainly grammar exercises so we managed, but a set of previously unseen instructions did tip the balance briefly. Grace held her head and rocked back and forth while rolling her eyes, urging herself to understand what she was supposed to be doing. Sometimes when that happens I have to calm her down, or she will start to hit herself. Sometimes I ignore her. And sometimes I tell her off for being silly. Tonight I did all three, and then I shouted. Immediately her level of distress mounted and consequently it took us another ten minutes to calm down, and another five before we could start again.

Sometimes I find myself thinking that Grace will grow out of this. Sometimes I tell myself shell learn not to do it. Most of the time, I dont know what to think, so I just try to deal with the situation at hand and move on.

One of the hardest things about being a good mother to Grace is knowing when the level of homework distress is related to her having Aspergers syndrome and when shes just being a moody preteen.

Grace was formally diagnosed with Aspergers syndrome only last year, after five years of waiting lists, inconclusive assessments, repeated questioning, and a lot of shoulder shrugging. By then, Graces dad and I had years of rationalizing that we suddenly needed to re-examine and recalibrate: from how we reacted to the little idiosyncrasies to how we dealt with odder behavior, to coping with the bigger things we really worried about. Even now, were only at the start of figuring out whats AS and whats not (and we dont always agree).