Testimonials for Rounding Home
“Rounding Home is a raw and honest view of the struggles and challenges of a family learning to deal with the life-changing realities of having a child diagnosed with special needs. Those stresses profoundly affect all those who care for and love that child, as well as the child him- or herself. This story of the Swindell family is a poignant demonstration of how each family member responded and was changed, for better or worse, as they struggled to come to terms with how their lives had been altered. And although there was damage along the way, they ultimately triumph by rekindling the love that created their family unit in the first place.”
—DR. BRYAN JEPSON, AUTHOR, PHYSICIAN, AND FATHER OF TWO SONS WITH AUTISM
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“As a professional, friend and mother of an adult son with profound autism, I am honored to know Sarah, the strong woman behind the voice that wrote this thoroughly interesting, poignant and eloquent account of her life. She gives voice to not only her experience(s) with her son with Autism, but how that had, and still has, profound effects on the entire family system, and all webbed in relationship with them. She skillfully weaves in her ‘wise adult’ insights, which adds richness and feeling to the reader’s experience.”
—DR. DOROTHY BYRNE, PHD, LPC-S, CHT, RDN, LD, AUTISM MOM
******
“In Rounding Home, Sarah writes with gritty honesty, a deeply moving account of life with her autistic son. However, this is more than another autism book. It is the gripping story of the Swindell family over the course of many very tumultuous years. Sarah shares vulnerability, passion, and true love for her family. This testament to the resilience of the human spirit will touch your heart and soul.”
—GAYLE NOBEL, LIFE COACH, AUTISM MOM, AND AUTHOR OF THREE BOOKS ON LIVING WITH AUTISM
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“Rounding Home is a gorgeously transparent and inspiring chronicle of The Swindell Family. This astonishing memoir speaks to anyone who yearns for deeper, truer relationships and a more abundant, authentic life.”
—KELLY TAYLOR-SIMMONS, AUTISM MOM TO 14-YEAR-OLD, PIERCE
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“Rounding Home is not at all what you’d expect. Instead, Sarah grabs and takes you through her roller coaster of life as a mother of four (one with special needs), baseball wife, infidelity, several marriages and divorces, heartache, loneliness, laughter and brings us back to what started this roller coaster journey—that one true love! Sarah shares it all with us, with honesty and grace.”
—JOANIE FRIEDEN, AUSTIN BUSINESS OWNER
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“Rounding Home is a riveting, page-turning masterpiece chronicling the sometimes heartbreaking, and always resilient Sarah, and how she and her family overcame adversity. The sheer vulnerability and grit demonstrated by Sarah is inspirational and unforgettable.”
—ERICA MANTEI, FORMER BASEBALL WIFE
******
“Rounding Home takes you on a riveting journey through the eyes of an exceptional woman who embraced struggle, love, success and the unimaginable, Autism. You weave through Sarah’s brave journey to home base through her strength, unconditional love, profound forgiveness, and perseverance. Get ready to laugh, cry and flutter with romance, it’s one hell of a love story!”
—GENA LEE NOLIN, ACTRESS, AUTHOR, ADVOCATE—“THYROID SEXY,” WIFE & MOTHER
Rounding
Home
A Memoir of Love, Betrayal, Heartbreak, and Hope with an Intimate Look into Raising a Child with Severe Autism
S A R A H S W I N D E L L
Copyrighted Material
Rounding Home
Copyright © 2019 by Sarah Swindell. All Rights Reserved.
No part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means—electronic, mechanical, photocopying, recording or otherwise—without prior written permission from the publisher, except for the inclusion of brief quotations in a review.
For information about this title or to order other books and/or electronic media, contact the publisher:
Sarah Swindell
[email protected]
ISBN: 978-17330277-0-0 (Softcover)
978-1-7330277-2-4 (Hardcover)
978-17330277-1-7 (eBook)
Printed in the United States of America
Cover and Interior design: 1106 Design
Cover photo: Nicolai McCrary Photography
Author photo: Brenna Wommack
For Zeke and our beautiful children, the OG.
Randee, Denise, Cynthia and Sue, my forever friends.
Most of all, for those affected by autism, and the families and caregivers who love them.
Disclaimers
This book is a memoir. It reflects the author’s present recollections of experiences over time. I have tried to recreate events, locales, and conversations from my memories of them and to the best of my ability. Some names and characteristics have been changed, some events have been compressed, and some dialogue has been recreated for storytelling purposes. Some dates and events may not be in the exact order that they occurred. My opinions in this book are not meant to replace professional medical advice from a pediatrician and/or primary care physician. The author shall not be liable or responsible for any loss or damage allegedly arising from any information or suggestions in this book.
Hotlines in the U.S.
All hotlines listed below are free and confidential.
National Suicide Prevention Lifeline
800-273-TALK (8255)
The National Suicide Prevention Lifeline is open 24 hours a day, every day.
Services are also available for veterans and for Spanish speakers.
The Trevor Project
866-488-7386 – a hotline for LGBT youth
Autism Society of America
www.autism.org
1-800-328-8467
Foreword
THIS STORY IS FOR ALL the women out there who have ever felt lost, broken, scared, betrayed, or felt as if they could not go on one more day in the life they were living. Being a parent is hard, being a wife is hard, and watching your child suffer is the hardest of all. We have all had, or will have, traumatic experiences and painful moments, no matter how hard we try to avoid them. It’s the choices we make during those moments that can change everything.
My hope in telling my own story is that you find comfort. That you understand that you are not alone and that you may learn from the mistakes I made. Never forget that love, in various ways, is right in front of you, waiting to give you comfort. You have to dig deep and find the courage to go toward it, embrace it and forgive yourself and others when you stumble along the way.
I stumbled too many times to count over the years. Trust me, I have questioned my own sanity many times while writing this story. Some may not get it at all, and some may breathe a huge sigh of relief knowing they are not alone in their struggles. I realize that while some events were out of my control, I also realize I made situations even worse by my own accord. Because of that, I also have learned the valuable lesson of forgiveness and grace for myself and for others.
I have done my best to keep the timeline of events as accurate as possible, but I may be off in places by a few months and quite possibly even a year or two. I have changed a few names, physical characteristics, locations, and selectively left out events that might cause harm to o
thers, most of all to my husband and children. While some of the events I talk about might be difficult to read or cause pain for some involved, my thoughts and feelings about those events are important in painting the whole picture. If this is the case, I am truly sorry, and it was not my intention.
This story is about my own journey through a challenging period in my life. I did my best to keep it authentic as to what I was feeling, while still being truthful, in as much detail as I felt necessary and to the best of my recollection. While this book has been professionally edited, I have asked them to keep it as close to my voice as possible. I am far from a writer, but have always felt I have a story to tell. Some of the conversations in the book have been created to give the reader an idea of my characters’ personalities and a general idea of real conversations that took place.
Acknowledgments
TO MY ONE TRUE LOVE. Zeke, I thank you for the text you sent me when I was making tater-tot casserole. You literally had me at hello from the moment I opened that door in 1992. You are the one I want to sit in a recliner holding hands with as we drink boxed wine for the rest of my life. This is our beautiful and messy love story, and I thank you for allowing me to share it, even the very difficult parts. You are my everything and I love you “fo real doe.”
To my beautiful daughters, Hayley, Brenna, and Sophia. Your support and encouragement to share this story gives me more strength than you will ever know. Thank you for always standing by me, even when I sometimes didn’t deserve it. Most of all, thank you for being the most amazing sisters to your little brother; he hit the jackpot with you three! I am so incredibly blessed to be your mom and proud of you in too many ways to count. You fill my soul, and I love you all with all my heart.
To my sweet boy, Dawson. You have changed me for the better, and you are my reason for everything good in my life, even when I wasn’t always aware of it. Without saying a single word, you have shown me the true meaning of love, and your strength in all that you have endured is nothing short of heroic. There is not one person that has met you and NOT fallen in love. I love you more than you love french fries!
My amazing parents, you have always been on my side and truly gave me the best life I could have wished for. Most of all, thank you for being a real example of what a marriage should look like. Your love for each other is a gift you have given to all of your children, grandchildren, and grandchildren to come; it is still beautiful to watch. You both embody what loving and devoted parents should be. I wish you would write a guidebook for the world to follow. I love you, Mom and Dad!
To my brothers who make me laugh harder than anyone else in the world and who continued to love me through all of my bad choices, thank you. Mel, you are like as sister to me and I love you, even during our “tough love” talks, because that’s what sisters do. Beth, my real sister, you are the strongest woman I know, and Justine was so lucky to have you as her mommy. I know she would have LOVED to read this book and would have been my biggest cheerleader. I love you both!
For the entire Swindell family, I can’t thank you enough for welcoming me in your lives, both times, and for loving me, no matter how messy things got. To Greg’s mom Tonii, you are an amazing mother and now great-great-grandmother; we are so blessed to have you in our lives! Chrystie Swindell, you are an angel in every way possible.
To the many teachers, therapists, nurses and doctors who have helped Dawson throughout his life. Without you, we would have been lost. The love and concern you have shown not only to him but to me and my family will never be forgotten.
A very special thank you to these people who have made a tremendous impact on my life in various and beautiful ways; the Bravo Family, Southwest Autism Research and Resource Center, Reach Unlimited, Justine Varga, Karie Dozer, Jennifer Thompson, Beverly Owen, Aaron Blocher-Rubin, Gayle Nobel, Jennifer Wright, Lexie Mader, Angie Balmer, Dorothy Byrne, Julie Pierce, Kacie Hall, Christy May, Kelly Taylor-Simmons, Dr. Andrew Wakefield, Dr. Arthur Krigsman, Dell Children’s Hospital, Texas Children’s Hospital, the Blue Bird Clinic in Houston, TX, Dr. Jay Shapiro and his nursing staff, all the beautiful baseball wives that were family for so many years, and Major League Baseball for allowing my husband to live his dream and for giving me and my children the chance to watch it all happen. It all still feels like a dream!
For my Austin girlfriends, you know who you all are, and I am truly blessed to have you in my life. You all are the strongest and most beautiful women I know. Laughing (and sometimes crying) with you is you is my favorite past time!
To my incredibly patient editors, Sue Gallup, Cecily Sailer, and especially to my dear friend Sue White. Boy, did you all have your work cut out! Your encouragement, suggestions, and ability to not laugh at all my errors is pretty amazing. Each of you understood my desire to keep this story in my real voice, even though it probably didn’t sound correct all the time. There is no way I could have done this without you, and I know it wasn’t easy. Thank you from the bottom of my heart.
And last but not least, this is for all the children and adults affected by autism or any other disability. To the parents, siblings, and caregivers who get up each and every day to a world that is sometimes frightening to face, but do it anyway with hope and pure love in their hearts. It’s not easy and never will be. You all are heroes in a million different ways and inspiration in millions more.
Contents
Testimonials for Rounding Home
Disclaimers
Foreword
Acknowledgments
Prologue
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
Chapter 29
Chapter 30
Chapter 31
Epilogue
About the Author
Prologue
Austin, Texas – Winter 2011
I HAVE EXPERIENCED SADNESS before, but it was nothing compared to the incredible hopelessness, exhaustion and fear I felt in those early morning hours. I wondered, was the exhaustion from lack of sleep, or was I simply tired of this life? My mind was as foggy as the weather outside, and the depression I felt was as heavy as a cloak I just could not seem to take off, no matter how hard I tried.
There is nothing easy about having a severely autistic child. At ten years old, Dawson was in one of the most difficult phases in his young life. At the same time, I was undoubtedly in the most difficult phase of my own life, and that certainly didn’t make our situation any better. Dawson hardly ever slept, and it seemed that for the last ten years, I was constantly in the “new mommy” phase, continually sleep deprived. I always felt like I just needed to lie down for a minute and shut my eyes.
Dawson makes these loud vocal noises; in the autism world they are called verbal stims. Verbal stims are essentially a coping mechanism autistic children form to help ease the stress they are experiencing, or to drown out things around them that are intolerable. It wasn’t too bad during the day, but in the middle of the night, those sounds became almost unbearable and certainly impossible to sleep through.
Sometimes he would cry in the night as if he was in immense pain, but because Dawson is nonverbal, he was never able to tell me what was wrong or show me where it hurt. It was a constant guessing game for me to understand how to help ease his pain and what to do next. Despite all of the intensive therapy we were doing
, he just wasn’t making the progress I had desperately hoped for so many years ago. My heart ached for my son, he had to live such a confusing and too-often painful life. To love a child as much as I love Dawson, and to have no idea how to help him, is impossible to describe. At times, I was literally paralyzed with fear just thinking about his future; and now, on top of all of that, I was scared for my own.
It was the third time that week I had to get Dawson out of the house in the middle of the night so my teenage daughters could get the rest they needed for school. Those destinationless drives would take me all around Austin as the rest of the city slept. I was so exhausted, tears started to pool in my tired, burning eyes as I strapped Dawson into the back seat and grabbed my coffee off the hood of the car. He started to fuss a little, so I gave him his bowl of Chex to snack on and his beloved silk ribbon that in a way was his security blanket and usually would keep him occupied for a while. I didn’t bother to put on my shoes or a bra, as I slipped into the driver’s seat looking more than a bit disheveled.
I backed out of the driveway and pushed my Dixie Chicks CD in. I knew that I was only torturing myself by listening to it when I was already so upset, but I did it anyway. This was our music, Greg’s and mine.
As the Dixie Chicks sang, my mind raced back to all that had happened in the last year and a half. Tears started to pour down my face as a profound sadness filled my entire body. Even though Greg’s affair with my best friend had happened over a year ago, the heartbreaking images of them together were etched in my brain. It played over and over and over like a horror movie that I was being forced to sit and watch. I was still filled with so many questions and no real answers.
I missed Greg so much it hurt, while at the same time I hated him for what he had done to me and to our family. But I hated her more; she plotted, planned and pretended to be my best friend as she intentionally stole my husband and shattered my family into a million pieces.
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