Worn Like a Badge: One Family's Heartfelt, Humorous, and Sometimes Harsh Account of Life with Twin Daughters with Autism

By J. L. Verita

Worn Like a Badge is the best way to describe my ownership of my daughters' diagnosis with autism. It illustrates my desperate need to embrace and accept this truth, which hopefully would prepare me for the battle ahead. Keeping this a secret, pretending this was not as bad as it was, was not an option for the girls or for me. There was no time for fear or shame. I needed to be free from the weight of this disease in order to attack it with all my will. I wish I had this book when the girls were diagnosed. It may have hastened my transformation from victim to victor. It is a must read for anyone who has or is caring for a child with a disability. I hope that it proves as helpful to the reader as it has been to the writer.

• Language: English
• Publisher: Page Publishing, Inc.
• Release date: Feb 21, 2019
• ISBN: 9781644240144

Book preview

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Worn Like a Badge

One Family's Heartfelt, Humorous, and Sometimes Harsh Account of Life with Twin Daughters with Autism

J. L. Verita

Copyright © 2018 J. L. Verita

All rights reserved

First Edition

PAGE PUBLISHING, INC.

New York, NY

First originally published by Page Publishing, Inc. 2018

ISBN 978-1-64424-013-7 (Paperback)

ISBN 978-1-64424-014-4 (Digital)

Printed in the United States of America

Table of Contents

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter 17

Chapter 18

Chapter 19

Chapter 20

Chapter 21

Chapter 22

Chapter 23

Chapter 24

Chapter 25

Chapter 26

Chapter 27

Chapter 28

Foreword

It has been an honor to know J. L. Verita and her twin daughters for the last eight years. As a speech-language pathologist working for twenty-two years with children on the spectrum, I have never witnessed this level of dedication to family and strength of human spirit in a parent. I feel that this book could provide emotional support to families affected by autism as they will feel the power and the courage of J. L.’s authentic experience. There are life lessons for all of us to take away after reading this book. For those families not yet affected, I believe it is a guide for them as human beings on how to accept and offer kindness to those that are struggling with this devastating disorder. I say yet as it is likely in our lifetime we will all experience autism in some form. It was heartwarming to learn how a brother’s love for his sister shone a light as they forged a path forward for these girls with love, humor, and acceptance.

Jacqueline A. Fisher, MS, CCC-SLP

Occupational therapy, according to the World Federation of Occupational Therapists (WFOT), is defined as a client-centered therapy that aims to enable people to participate in the activities of everyday life through enhancing their ability or by making modifications to the occupation or the environment.

It was in 2008 when I began working with the twins and their family. It has been a long road where every accomplishment included setbacks and the uncovering of new behavioral issues or skills that needed to be addressed. What began as sensory-based occupational therapy progressed into the need to learn and adapt self-care tasks to instill some independence for the girls. A simple task that the everyday person performs on autopilot is made up of a multitude of subtasks that, for some, must be broken down and learned through rigorous repetition.

Throughout the ten-plus years, it was evident that there was something different about this family. It is the love and dedication they encompass that holds them together and gives them strength to carry on. Only a strong person can provide the level of care that the girls need while carrying out the homework and suggestions that are provided by each therapist and teacher. Beyond strength, it is even more challenging to embrace the obstacles that they are faced with instead of surrendering or looking for sympathy.

This book highlights a family’s journey through autism and the trials and tribulations that helped them continue and persevere each day. It is with confidence that I say I have learned equally as much from them as they have from me. I am truly honored to be included in this book since they are now part of my family.

Kerri Palumbo, MS, OTR/L

Occupational Therapist

Every expectant parent’s dream is to have a healthy baby (or two, in this case). I met this family over ten years ago when the girls were eight years old. I remember going to their house and being greeted by a mother that looked like she had it all under control. She introduced me to Uncle Johnny and her two beautiful girls, with eyes so bright that they lit up the room.

I introduced myself to the girls, and they totally ignored me. I’m used to being ignored by the people I care the most about in the world: my students with autism.

Jessica was having a difficult time that day. Mom was nervous but pleased that I was there to experience Jessica’s episode. She wanted to see my reaction. At the end of my visit, Mom asked, Aren’t you afraid? My kids can be very scary. I understand if you don’t want the job. I immediately said, No, I’m used to working with children with severe problem behaviors. I can handle it.

You see, I have solid talents in connecting with students under the spectrum. Training them in academics and life skills as well as working with them to help them achieve and maintain a successful life. My passion in my field of Applied Behavior Analysis (ABA) and my commitment to my students has helped me become the person I am today.

There is nothing I would rather do.

Twelve years later, I can say that Mom is one of the most amazingly dedicated mothers I have ever had the pleasure to work with. This book is just a fraction of the struggles she has endured. Mom and the girls have been victims of the harsh reminder of the intolerance and misunderstanding society has to offer. I witnessed it many times, and it broke my heart to see her suffer through it. Just like she says it in this book—I saw her becoming a spectator rather than a participant in many occasions. Caring for the girls and providing a safe and happy environment is Mom’s most important task in life. I’m honored to have been able to walk this path with her through the victories and challenges.

Mom has many amazing qualities. In spite of all the struggles and misfortunes she has had to face over the years, she continues to be a wonderful mother. She is a loving, caring fighter, and most of all, she NEVER lost her sense of humor.

This book clearly illustrates her personality. This is a heartfelt, emotionally powerful, funny, and cruelly realistic story. Worn Like a Badge is the story of a mother and her battles raising her beautiful twin daughters who have autism How society continues to judge and discriminate those individuals with disabilities and how the educational system is not always on the side of those who need it the most is evident. This is a book that should be read by every parent with a disabled child and by the professionals in the field.

Victoria Camacho, MA.edu

I am so tired—seems like that was all I ever say lately.

It was Friday night, not that that mattered. Every night was mostly the same—getting night bottles ready and preparing to be up multiple times with Jennifer and Jessica. I really did not mind; the girls were miracles, at least I thought so. I could not imagine life without them now, but for the first ten years of my marriage, it seemed we might not have kids.

But I never gave up—a quality that could be good or bad, depending on whom you ask. In this case, it had to be good; looking at the girls in the living room to my left, it had to be a good quality. Even though they were tough and