Robert Hughes - Walker Finds a Way: Running into the Adult World with Autism

Walker Finds a Way

by the same author

Running with Walker

A Memoir

Robert Hughes

ISBN 978 1 84310 755 2

eISBN 978 1 84642 406 9

Walker Finds a Way

Running Into the Adult World with Autism

R OBERT H UGHES

Jessica Kingsley Publishers
London and Philadelphia

First published in 2016

by Jessica Kingsley Publishers

73 Collier Street

London N1 9BE, UK

and

400 Market Street, Suite 400

Philadelphia, PA 19106, USA

www.jkp.com

Copyright Robert Hughes 2016

All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, Saffron House, 610 Kirby Street, London EC1N 8TS. Applications for the copyright owners written permission to reproduce any part of this publication should be addressed to the publisher.

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Library of Congress Cataloging in Publication Data

A CIP catalog record for this book is available from the Library of Congress

British Library Cataloguing in Publication Data

A CIP catalogue record for this book is available from the British Library

ISBN 978 1 78592 010 3

eISBN 978 1 78450 253 9

F OR MY MOTHER , R UTH H UGHES A TKINS

Contents

C HAPTER

ZooTrainWalk

December 2013

EVEN UNFLAPPABLE ABRAHAM LINCOLN seems to be feeling the chill today. With snow on his head and on his lapels, he looks as if hed rather hunker down under his big chair than yet again deliver the speech he perpetually does in this lovely setting.

Nowait. Thats me who would like to crawl under a chair. My son Walker has been pulling me along rapidly on this dark and late December afternoon before Christmas, and I am very tired and very uncomfortable. For years Ive projected my feelings onto this statue, Standing Lincoln, in Chicagos Lincoln Park. Ive passed him hundreds of times and in many moods: worry, happiness, occasional euphoria.

This day my bronze old friend catches me in a time of high anxiety. Walker has what is called low-functioning autism, a term that doesnt really help describe him much but does nail down a few key difficulties. At 28, hes a big guysix foot threeand terrifically good-looking. Monday through Friday he lives in a group home on the North Side and on weekends he stays at his family home with his mother Ellen, his brother Dave, and me.

This Saturday has been a typical one in some ways. I picked him up at the group home at 9 a.m. and we went for a long drive. At noon we hung out in the house, though hanging out doesnt capture the tricky, strenuous, tense arrangements we make to manage him. Walker is the most kinetic guy in the world: he never sits still and is always moving and demanding things. In the past it was usually food. These days he has very little appetite and has become worryingly thin but still hasnt slowed down a bit.

This afternoon the cry was, as it always is on Saturday, ZooTrainWalk! This is his telegraph-speak for Lets get out and take our long walk, Dad! His autism mainly manifests itself as a communication problem. He is verbal, but shrinks his few statements into the shortest form possible: Shoes and socks! for Lets get out of here; Gurnee Mills! for Lets get in the car and take the long drive to Gurnee; Fancy Free! for Lets watch the YouTube video of Fred Astaire singing and dancing to the Irving Berlin song Fancy Free.

Yes, autistically, he has trouble communicating. But, un-autistically, he wants to do all these things with someone, never alonenever off, in the phrase Ive learned to despise, in a world of his own.

On this cold, cold Saturday in the winter of what the weather sages on TV are calling the polar vortex, Walker is holding my hand and pulling me along faster than my shaky knees want to go. He stops and shouts Pen! This is Walker code for Lets write down another schedule! Every statement Walker ever makes must be followed by an exclamation point, inadequate as the punctuation mark is. Laptops dont have a key for Urgent. Im afraid the future will disappear if the words arent in front of me right now. Hurry!

Although he already has five Dad-printed schedules in his hand, I know better than to insist on reading one of these old, snow-soaked memos again. So we sit down on a bench near the statue and I take the occasion to breathe and think and let my knees throb in peace. I pull an index card out of my back pants pocket and a pen out of a coat pocket and begin naming the notable stops and road markers of the immediate trip ahead: BF for the statue of Benjamin Franklin; BW, ducks geese seagulls, and red-winged blackbird for the sights we see along the boardwalk over the lagoon, even though I know no self-respecting fauna will appear during our polar vortex.

The first list I printed was at the beginning of our expedition when we got off the subway a mile and a half back from this point. That was where I did my preliminary knee-checkAre my Walgreens knee braces firmly in place? Yes!and calculated that the old joints would probably hold out. At 64, Ive been buffeted a bit by the usual bodily breakdowns, but this knee thing has produced real concern. ZooTrainWalk! is basic to our fatherson relationship. Long hikes through the city practically define us as a team. If I could no longer hack them, a central pleasure of both his and my life would vanish.

Walking fast and far through the city is our big bonding moment. From the time he was a toddler in a stroller, he has delighted in street faces, clerks in stores, ambulances on the street, spectators at the Marathon, marchers in the Pride Parade, crowds at the Air Show, breast cancer walkers in pink, sunbathers on the beach. He has reveled in the change of seasons, the changes in the weather, the sea of humanity in the zoo on a warm day, the privacy of our zoo on frigid days when were the only visitors there. Throughout our walks, on normal days, his face is lit up with pleasure and his smile never goes away. He looks at the sky as if the parachutes with food rations have finally arrived. He looks at strangers as if they were old friends emerging through the arrivals gate at OHare.

And I have learned to see all this through his eyes and learned to appreciate our city pretty much as he does. Its not a subtle thing. Its just an unavoidable effect of being near someone with such deep appreciation of his world. Anyone who catches sight of Walker picks up on it. Speed-walking along, I see the faces of passersby light up with smiles when they spot him. Of course, some of the smiles are reactions to our traveling comedy routine: two tall men holding hands, the leader smiling and tugging behind him an old guy whos trying in vain to keep up.

Unfortunately, this snowy and dark Saturday afternoon is not a normal day. Walker is not grinning, and I am not happy. The staff at his group home say that hes become more and more unmanageable, even dangerous: hitting staff and other clients, becoming anti-social and ignoring the other residents, shouting Mommy Daddy! at them for no reason, and not eating. So for months now we have tried to minimize his time at the home by picking him up every day after his vocational training at 3 p.m. and bringing him back there only to sleep at night. The sole activity that really relaxes him, that really helps his spirit, is this walk, which I take with him rain, polar vortex, or shine. He rarely smiles now but races determinedly down the street as fast his dad can stand.