Claire Hughes Ph.D. - Children with High-Functioning Autism: A Parents Guide

with

a parents guide

Claire E. Hughes-Lynch, Ph.D.

PRUFROCK PRESS INC.
WACO, TEXAS

Copyright 2010, Prufrock Press Inc.

Edited by Lacy Compton

Cover and Layout Design by Marjorie Parker

ISBN-13: 978-1-59363-530-5

ISBN-10: 1-59363-530-3

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To Annalia and Nicholas

I want to deeply thank my husband, James, who fed, cared for, and generally dealt with the mayhem while I was gone for 3 weeks at a time. I thank him for the years of working together and support for me, for us, and for our family since weve started down this road together. I love you, darling.

To my mother, Jami, who listened, read, bounced ideas, provided reiki and financial support at every step along the way, and who devised ways of dealing with an overactive, sleepless, anxious child without support, knowledge, or financial backing. She is the original mapmaker and someone I want to be just like when I grow up.

To our family, particularly Lia (Yiayia) who loved the sounds of her grandchildren, no matter how loud they yelled, and who prayed and played with the children; and to Papou Pete, Dampa, Maria, Haroula, Gran, and Grammy and their awareness of the power of love and genetics.

To my friends who listened, let me cry, and provided sustenanceboth physical and emotional: Darla, Laura, and Linda; the Boyce, Johnson, Barker/Bergmann, Crespin, Kendall, and Hall families; Wendy, Elissa, Donna, Lou, Nicki, Christy, Tara, Cari, and Michelleno matter where I am, there you are.

To the pets who provided therapy and unconditional love beyond what animals are supposed to do: Cody, Nellie, Chrissie, and even Bailey.

To the teachers who taught me about myself and my children, to look for strengths in the most challenging of behaviors and to think about other perspectives: Joyce, Elizabeth, Ginny, Lori, Kim, Amy, Nicki, Jane, Miss Gates, Mrs. Skaggs, and Mr. Kramer.

To our angels who loved and helped my children when I was too tired to keep going: Irene, Molly, Emmy, Amberly, Lori, and ZachI am so grateful.

To Jay and Maureen McGowan for the McGowan Prize, which sent me to Oxford to study autism; and to the wonderful faculties at the College of Coastal Georgia, Bellarmine University, Florida Gulf Coast University, University of South Florida, Indiana University of Pennsylvania, The College of William and Mary, University of North Carolina at Greensboro, and the University of New Mexico. You rock!

To Webkinz, for providing entertainment that kept me going. This book would not have been finished if I hadnt toggled back and forth between Tile Towers and my manuscript.

To the publisher, Joel, and my editors, Jenny and Lacy, for their original idea and wanting to hear from both sides of methe teacher of teachers and the parent.

To Rachel and Tina and the other mothers of children with autism whose stories, blogs, books, and support I depend on. Your work has led to many, many changes and so much awareness. I have such respect for you and your hard work blazing the trail.

And most importantly, to the biggest part of my heart, my children, whose stories I have shared and whose love I value every day. Mamas here. Mamas always here.

I f youre not sure where youre going, youre liable to end up someplace else. If you dont know where youre going, the best made maps wont help you get there.

Robert Mager, psychologist, writer, educator

Its important to know that no one chooses autismyou, your child, and your family were drafted. You need to remember this when teachers, other parents, and total strangers feel free to tell you that youre using autism as an excuse for ___________ (name your issue here: misbehavior, laundry piling up, financial failure, your lack of showering ...). Just like being drafted and being shipped off to another country, autism will change your whole lifeyour plans, your dreams, your family structure, and even your relationship with your local grocery store. Everything will be different than you expected, but not always in a bad way. Just ... different.

This book was inspired by the essay Welcome to Holland by Emily Perl Kingsley (see Figure 1). I love this essay and present it to my college students when teaching Introduction to Disabilities, but I never really appreciated its wisdom until I sat crying as I reread it one night. I also realized that there was a lot of information about Italy, or typical development, and Holland, or children who had disabilities, but very little about children who were, well, different. Children who exhibited some, but not all of the characteristics; children who had some really significant strengths that were both a result of and impacted by differences. There wasnt much information about children from Switzerland who arent quite typical, but dont have classic disabilitieschildren like my child, who has high-functioning autism. And so, the idea for this book was created.

Figure 1. Welcome to Holland essay.

1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disabilityto try to help people who have not shared that unique experience to understand it, to imagine how it would feel. Its like this ...

When youre going to have a baby, its like planning a fabulous vacation tripto Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, Welcome to Holland.

Holland?!? you say. What do you mean Holland?? I signed up for Italy! Im supposed to be in Italy. All my life Ive dreamed of going to Italy.

But theres been a change in the flight plan. Theyve landed in Holland and there you must stay.

The important thing is that they havent taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. Its just a different place.