Rounding Home: A Memoir of Love, Betrayal, Heartbreak, and Hope with an Intimate Look into Raising a Child with Severe Autism

by Sarah Swindell

  Another angel in our lives at that time was Greg’s older sister, Chrystie. Shortly after Dawson’s diagnosis, she selflessly left her life in Texas and moved to Arizona to live with us. Chrystie was the kind of girl that you instantly wanted in your life. Like Greg, she was very quiet and was more of an observer than a talker. She had a warmth about her that was instantly calming, and she always had words of encouragement after a rough day. She loved our kids as if they were her own and was on a mission to help Dawson any way she could.

  Chrystie even took classes on ABA and learned strategies and techniques so she could work with Dawson when the therapist wasn’t there. We were literally bombarding Dawson with therapy to try and reverse the damage that had been done to his brain. Chrystie gave us emotional support as well. She would often sit and cry with us on days we felt defeated, or be a shining light with her infectious laugh when Dawson would make a tiny breakthrough. We also still had Maria helping us out and could never have made it without her love, kindness and heartfelt support. Dawson was like Maria’s own son. She had been there since the day he was born. I knew she worried just as much as we did.

  My parents would fly in for a few days here and there so I could meet up with Greg on the road for a little respite, or just for moral support when things got really tough at home. I wanted to do my very best to keep things as normal as possible and make sure my marriage was taken care of just as much as my children were. Those little trips helped so much. Dawson’s support team saved me in so many ways, I can’t imagine how I would have gotten through those early years without them by my side.

  The girls rallied around him, doing all they could to help their beloved, lost baby brother. Brenna, especially, would follow Dawson around the house, trying to engage with him any way she could. Even though she was only eight years old at the time, it was like she knew we had to get him back into our world. Brenna would quietly sit and observe the therapy sessions as if she was trying to learn the techniques herself. We would catch her later trying to work with Dawson on her own. We all had no idea what we were doing, but we always had a nagging feeling that time was of the essence.

  When you have a baby, it’s like you’re setting out on the ultimate road trip with no map or GPS to guide you. When we started Dawson’s road trip, we got a nail in the tire before we even left our neighborhood. Our journey continued to be unpredictable and scary at times, and I was constantly looking for new ideas about what to try next. I attended an autism conference that year, where I met Dr. Andrew Wakefield. He was a British gastroenterologist, forced to leave his practice in England after he published a case series in The Lancet about the possible correlation between the MMR vaccine and autism in 1998.

  I realize this is a very touchy and controversial subject, but I refuse to be silenced by fear of what people may say or think about what we believed happened, what I believed happened to our son. There is no denying that Dawson quickly regressed within days, if not the day he received his routine vaccines. Prior to receiving his last round of shots, Dawson had several words in his vocabulary, he was engaged with his surroundings, and had imitation skills. He smiled, laughed and had perfect eye contact. In less than one week, all of it simply vanished. When I look back at all of his records, I see a pattern. After each shot he got sicker and sicker with ear infections and loose stools, but his personality was still there. I was just doing what the doctors were telling me do, just like I had done with all three girls. But the feeling that I was the one who pulled the trigger that ended Dawson’s life, so to speak, has never gone away. He was never the same again after that last round of shots. His life was forever changed.

  I believe with all my heart that all the antibiotics he was on were destroying his gut and his immune system. When live viruses are injected into a compromised immune system, there is no way that can be good. I am not a doctor or a scientist by any means, but I have spent the last seventeen years of my life researching what may have happened to Dawson. Let me be clear, I am not against childhood vaccines and am a believer in the good that Western medicine can provide to very sick people; my son included. However, I do believe a safer protocol should be used, as this is not a one-size-fits-all situation. The bottom line is, if it is just as easy for the “experts” to suggest that pesticides, among other environmental issues, may cause autism, why can’t a syringe filled with live viruses and other toxic ingredients be a possibility as well? It is no different than thinking stress can cause cancer.

  My twenty-nine-year-old daughter received nine shots before the age of two. Now babies are required to receive over thirty-five different vaccines before the same age. Who did the research on the long-term safety of so many shots in that little time? I realize not all babies will react to routine vaccines, just as not every smoker will get lung cancer, but the possibility for lung cancer goes up the more you smoke. I’m a very reasonable person and have always been open to any other ideas as to what happened to my son. I was going to do anything in my power, as any mother would, to turn over every stone out there in order to help him. His obvious adverse reaction to that round of vaccines has haunted me every day for years. It’s the only thing that ever made any sense, and I believed it more than ever after I attended one particular conference and met Dr. Andrew Wakefield.

  As I sat and listened to Dr. Wakefield’s presentation for the first time, tears rolled down my face as he described his research and findings. He spoke about some of the mothers’ stories and what happened to their children. To my horror, their stories were almost identical to mine. Most of them started with numerous ear infections and prolonged antibiotic use, followed by regression and bowel issues shortly after a routine vaccination. I immediately thought about that day in the driveway as my neighbor talked about delaying her son’s vaccines because she was concerned about the autism connection. Why didn’t I listen? I could have saved Dawson, but instead I felt like I had murdered him.

  I fought so hard to control the flood of emotions and tears as I continued to listen to Dr. Wakefield. I lost that battle. I looked around the room at the hundreds of other parents, mostly mothers, and noticed they looked just like me—scared, heartbroken and with tears in their eyes. I started to look at all those women as if they would be my new family, a club I wanted nothing to do with, but would join whether I liked it or not. I had a sudden urge to spring up out of my seat and hug each and every one of them. I wanted to tell them how sorry I was about what they were going through, because I understood and felt the very same way they did. A sudden feeling of extreme closeness to this group of complete strangers was followed by a new sense of calm. I was not alone in this fight.

  It never really hit me until that day at the conference, that this is what might have happened to Dawson. Every word Dr. Wakefield spoke felt as if he was describing my own personal story. Everything he said made sense to me, and for the first time that year, I felt like we finally had something to navigate by. If we could figure out the cause, maybe there would be a specific treatment plan that would actually work! Maybe Dawson was in so much physical pain from the inflammation in his belly that his brain was just not working properly. Cure the pain, cure the brain, I thought.

  During this time, Dawson was having bowel movements at least ten times a day. I wouldn’t even call them bowel movements, they were more like a frothy, foamy mess of easily recognizable undigested food. While no poop is pretty, his was a whole other kind of animal with a smell that had no proper descriptive word to go with it. Whatever it was, it wasn’t right, and we had to find a way to get some much-needed relief for him. I had no doubt in my mind that the doctor standing at that podium was the answer.

  After Dr. Wakefield finished speaking, I, along with every other distraught mother in the room, fought my way up to him with the hope of talking to him personally. It felt like it was Black Friday and we were all clawing our way to the front of the store, about to claim our deal of a lifetime. Only in this case, the deal was saving our child. I finally reached h
im, and with pleading, desperate eyes, begged him for help. I used the “I’m married to a professional baseball player” card. I would do anything I could to grab his attention. By this point in the game, I would have done just about anything to help Dawson. I got his contact information and felt like I had just won the lottery. This was the first glimmer of anything even close to resembling hope.

  A few months later, the Diamondbacks released Greg. Baseball had finally come to an end after seventeen unforgettable years. He could have kept going in the minor leagues with the hopes of being called up again, but between his bad hip and the stress of autism, he decided it was finally a good time to retire. This may sound like a great thing to most people, because who wouldn’t want to retire at thirty-eight years old with plenty of money in the bank? Ask any baseball player, retired or not, how much they love what they do, and they will tell you they would never retire if that was an option. Any professional athlete, no matter what the sport, would probably say the same thing.

  Losing the one thing that made Greg who he was for so long felt like another death. He lost a big part of his identity, his purpose, and the special friendships with the teammates he saw every day for eight months in a row for seventeen years. He went from being a celebrity to being just a regular guy with nothing to do anymore, and no one really seemed to care. I know that still doesn’t seem too terrible, but it was for him. I believe the combination of being let go by the team he loved, combined with the constant stress of what was happening to his son, was too much for him. He was a guy who didn’t express feelings about stuff like that; he held it all in. On the other hand, I was personally thrilled to have another set of hands to help with all that was going on at home, and I was glad the traveling days were over. Not only did I miss Greg so much when he was gone, now I didn’t have to do it alone anymore.

  Dawson continued to struggle through all of his therapies. We were all getting beat down by Dawson’s lack of progress and the constant revolving door of people in our home. Greg seemed lost to me, not really knowing what to do with himself, now that he wasn’t heading to the ballpark anymore. I was plenty busy managing the kids and Dawson’s rigorous schedule with caregivers while trying to keep the constant tantrums at bay. Greg was very helpful and would do anything I needed, but he just was not himself, not at all. Maybe we all were not ourselves.

  A few months into his retirement, I started to feel a subtle shift in our marriage. I knew the stats on all the failed marriages surrounding autism, along with the stats on being married to a retired professional athlete. I was never going to let that happen to us. I truly believed our marriage was stronger than most. I know many couples go through an adjustment period after a spouse retires, from any profession, but this seemed different. Something was happening between us that I just couldn’t quite put my finger on. I felt like something bad was simmering, just waiting to boil over.

  CHAPTER 11

  WE MOVED HOUSES AT LEAST three times from 2003 to 2004. One would think that moving with four children, not to mention one with very special needs, would not be considered a fun thing or a good idea. The kids didn’t seem to mind much because they never had to change schools, as each house we moved to was in the same school district. Greg didn’t mind as long as he didn’t have to help with the process, and my mom enjoyed it, so I had no problem with it. Since we always moved close to the last house, it would take about a week to shuttle our small items over to the new house. So by the time the furniture was set to be moved, everything was already there, without any boxes to unpack. I had developed a systematic method to my madness.

  Clearly, it was not always a good financial decision, after broker fees, moving expenses, etc. But I didn’t care, I loved it, and I loved the physical labor it required. It was a huge rush for me, and I had a tremendous amount of satisfaction when it was over. Most of all, it took my mind off everything bad that was going on.

  Early in 2004, we decided to move to Austin, Texas. Greg was offered the volunteer coach position for the Texas State baseball team where his best friend was the head coach. Greg didn’t finish college at The University of Texas at Austin because he was drafted as a first-round pick his junior year. The plan was for him to try and finish college so he could eventually become a paid coach. Not long after coaching at Texas State, he became the volunteer coach for the Texas Longhorns. He was thrilled to be back with the team that changed the path of his life. Unfortunately, we were entering full-blown marriage crisis by this point, and Dawson was at his very worst, which did not help the situation.

  Greg and I never really fought, but there was an undeniable tension between us. I would get easily annoyed if Greg sat around watching TV all day, and I felt I was doing everything, from taking care of the kids to managing the house. Even though I did all those same things when Greg was playing ball, now we had a child with special needs, and home life was very different than it used to be.

  He would do anything if I asked, but I didn’t want to ask. Like most women, I wanted him to read my mind and just DO it without me asking. Obviously not a reasonable thing to expect from anyone. There came a point when we stopped having fun together and rarely talked about anything other than the kids. We even stopped talking about what we needed to do next for Dawson. Most of the time, I felt like I was the only one doing the talking and making decisions, while he quietly listened without much feedback.

  At first I thought the change of scenery from Arizona to Texas would be good for both of us, that it would give Greg a chance to get back to the baseball world he missed so much. But all it really did was make me feel like I was raising our children by myself all over again.

  Dawson was still hardly sleeping, and along with being in constant pain, this led to consistent tantrums. He was covered in bruises from beating his own body against anything he could find to ease his pain. Thankfully, I had stayed in touch with Dr. Wakefield and was beyond thrilled to learn that he and his family were moving to Austin to open an autism resource center. Hope was finally on the way.

  One afternoon Greg came into the kitchen and asked, “What do you think about me coming out of retirement and giving it another shot?”

  The way his face lit up just talking about it was proof enough of how much he wanted to do it. I immediately told him I was on board. He quickly got on the phone with his agent and was soon invited to Kansas City’s spring training camp. He was thirty-nine years old, but felt confident he had what it took to make the team. To make it even more exciting, we found out our favorite country singer, Garth Brooks, was going to be there for the entire spring training. It was a dream of Garth’s to play along with a major league team, and a dream of Greg’s to hang out with his idol.

  On Valentine’s Day 2004, Greg left for spring training like he always had, with a sweet card and a long, tearful goodbye. I was hopeful that this would bring a little zip back in our marriage and would return Greg back to his old self again. There was no way I could have joined him for spring training, the kids were in school, and I was not about to travel with Dawson. I was still traumatized by the last time I flew with him. That two-hour flight was filled with endless tantrums, and by the time we touched down, I was literally covered in poop from his diaper that had leaked. Nope, never again. It was going to be a long six weeks, but I had a sense that this was going to be the best thing for us, and most of all for Greg.

  It was one of the best spring trainings Greg ever had. Even more incredible, Greg and Garth became buddies. We were later invited to spend a weekend in Oklahoma with Garth and Trisha Yearwood, on their houseboat, on their private lake, on their property. Having Garth Brooks pick us up from the airport and Trisha Yearwood cook us breakfast is definitely on our Top 5 List of best moments ever.

  We were confident that Greg would make the final roster that spring, and we both felt a renewed sense of excitement after a very difficult two years. We desperately needed a bright spot, and I desperately wanted my happy husband back, doing what he loved and had misse
d so much.

  “I was cut, babe,” Greg told me on the phone.

  On the last day of spring training Greg was told he didn’t make the team. He was devastated; we both were in shock. He could not have proved himself any more than he did during that spring, but it just wasn’t enough. He would once again have to endure the emotions of losing his career. We were all too soon back to the reality. Now we needed to stay focused on our girls, on Dawson, AND on us.

  One night about a month later, Dawson was thrashing around so badly we were afraid he might really hurt himself. He had lost a great deal of weight and looked nothing like a healthy three-year-old should look. No doctor could explain his uncontrollable bowel issues, they would just say it was probably the stress of the autism. By this point, I was convinced, more than ever, that it was all vaccine-related. I researched everything I could get my hands on, and Dr. Wakefield’s theory was the only thing that continued to make any sense to me.

  On this particular night, we had had enough of watching Dawson’s miserable and painful life continue with no answers. It was late when I frantically called Dr. Wakefield to see if he was willing to come over to see what was going on. Thankfully, he arrived at our house a short time later, and we walked him upstairs to Dawson’s room. He watched with a concerned look as Dawson twisted and contorted on the floor, screaming as if he was being ravaged by a pack of lions.