Janice Janzen - Autism Handbook for Parents: Facts and Strategies for Parenting Success

A U T I S M

H A N D B O O K

F O R P A R E N T S

A U T I S M

H A N D B O O K

F O R P A R E N T S

F a c t s a n d S t r a t e g i e s
f o r P a r e n t i n g S u c c e s s

JANICE E. JANZEN

PRUFROCK PRESS INC.
WACO, TEXAS

Library of Congress Cataloging-in-Publication Data

Janzen, Janice E.

Autism handbook for parents : facts and strategies for parenting success / Janice E. Janzen.
p. cm.

Previously published as: Autism--facts and strategies for parents. c1999.

Includes bibliographical references.

1. Autism in children--Handbooks, manuals, etc. 2. Parents of autistic children--Handbooks, manuals, etc. I. Title.

RJ506.A9J36 2009

618.9285882--dc22

2008055474

2009 Prufrock Press Inc.

This work and the contents herein are published under a license with Hammill Institute on Disabilities and is also currently published by Hammill Institute on Disabilities under the title Autism Facts and Strategies 2006 by Hammill Institute on Disabilities. 8700 Shoal Creek Boulevard, Austin, Texas, 78757-6897, Tel. (512) 451-3521, Fax. (512) 451-3728, http://www.hammill-institute.org.

Edited by Jennifer Robins

Cover and Layout Design by Marjorie Parker

ISBN-13: 978-1-59363-471-1

No part of this book may be reproduced, translated, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission from the publisher.

Printed in the United States of America.

At the time of this books publication, all facts and figures cited are the most current available. All telephone numbers, addresses, and Web site URLs are accurate and active. All publications, organizations, Web sites, and other resources exist as described in the book, and all have been verified. The authors and Prufrock Press Inc., make no warranty or guarantee concerning the information and materials given out by organizations or content found at Web sites, and we are not responsible for any changes that occur after this books publication. If you find an error, please contact Prufrock Press Inc.

Prufrock Press Inc. P.O. Box 8813 Waco, TX 76714-8813 Phone: (800) 998-2208 Fax: (800) 240-0333 http://www.prufrock.com

CONTENTS

FOREWORD

W

hen my child was diagnosed with autism, it was as if I had found myself at the base of a mountain. Looming before me was a challenge not chosen, but thrust on me by fate. Yet, in order to help my child, there was only one thing to dostart climbing.

Early in my search for help, an autism specialist handed me a batch of papers that explained how best to facilitate learning for children with autism. This writing was so clear and succinct that I sent copies to everyone involved in my sons life. As it turned out, Jan Janzen was the author.

Sometimes I find it hard to believe that there are people who would choose to climb the mountain in order to help others find their way. Jan Janzen is one of those rare people. She sees autism from the vantage of more than 25 years of teaching experience. We can learn much from her perspective.

The Autism Handbook for Parents: Facts and Strategies for Parenting Success is filled with useful information, from the answer to your first questionWhat is autism?to discussion of the more complicated issues such as choosing treatments and educational programs. It is a resource you will refer to again and again.

This book is not only a carefully drawn map for you, the parent of a child diagnosed with autism, it also is a hand stretched out to steady you and to give you a boost along the way.

Elizabeth King Gerlach

Author, Autism Treatment Guide

ACKNOWLEDGMENTS

O

ver the years, many people have contributed to my knowledge of autism and the contents of this book. Although much of what I have learned came from my numerous colleagues in the field of autism, my most direct teachers were the children themselves and their parents. The parents have shared their concerns, their insights, and their hopes that services will be appropriate and adequate to help their children develop to the greatest of their abilities. To those parents, I wish to say thank you, and I hope that my work has made a difference. My appreciation to all for helping me grow.

I want to acknowledge the help of several parents who have had a direct influence on the contents of this book. Specifically, three parents contributed their time and experience to ensure that the contents were both accurate and useful. Elizabeth King Gerlach, author of Autism Treatment Guide and owner of Four Leaf Press in Eugene, OR, read most of the book twice and provided valuable feedback. She also allowed us to include her sons poem, I Hear the Beat (see pp. 189190). Wayne Jasper, the director of Parents Helping Parents, a parent advocacy center in Santa Clara, CA, reviewed some of the material for accuracy and provided some important insights. Valerie Rynne, a parent advocate who lives in Menlo Park, CA, read the first draft of the book and parts of the final draft. It was Valeries useful comments that made this book longer, more accurate, and I believe more useful.

I also want to thank the parents who shared stories and thoughts about their childs autism and gave permission to include the artwork and poetry in the final chapter. Bill Seaton, a father from McMinneville, OR, shared his very personal feelings about his relationship with his adult son, Burleigh. Bill allowed me to include the haiku (see p. 185) that expresses his insights so clearly.

Eileen and John Miller of Roseburg, OR, gave me permission to include the drawings on pages 187188, produced by their daughter, Kim. Not only did they share stories about Kims life, but Eileen provided the story of their struggles to protect Kims safety (see pp. 123125). Another mother, Karen Williams of Washington, PA, shared her daughters drawings (see p. 186). Karen provided stories to illustrate how Rosemaries drawings contributed to her development.

I want to thank Margaret Eastham of Ottawa, Ontario, Canada, for giving me permission to include her son Davids poetry in both of my books. Over the years, Davids wonderfully insightful poetry has given me a deeper understanding of the nature of autism. I believe it will affect you in the same way (see p. 191).

My thanks and appreciation also go to Ricky Bourque, the editor of both of my books, who seems to have become part of my family.

Finally, thanks to Marvin, my husband and most trusted supporter, who read it all many times and put up with my work as we traveled from coast to coast in our RV. Without his enthusiastic support and that of our four children, I would never have had a career.

INTRODUCTION

T

his book is written especially for you, the parent who has just discovered that your child has autism. You probably feel that you are groping around in a world gone a bit crazynothing is quite the same as it was before. Although it is a relief to know there is a name for your childs problems and there are people out there who understand how to help, you probably have many questions and concerns, and dont quite know how to proceed.

I have worked closely with many families in your position. I know how confusing it is to work with professionals who seem to talk in another language, and to find that many books and articles about autism are either reports of research or stories about individuals with autism who have little in common with your child. It also is unsettling to find out that there are many contradictory ideas about autism and what should be done.