Parents and their children sat all around us. They all looked like they were trying not to think about the news that might be handed to them about their precious child. I imagine Greg and I had the very same look of fear on our faces.
“What do you think she is going to have him do?” I asked Greg, trying to break up our nervous silence.
“I have no idea. It’s not like she can ask him questions or anything,” he said with a shrug.
Dawson was sitting on the floor, staring intently at a speck of paper, as if it were a treasure. He would not take his eyes off it. Both of us knew what we would probably hear, but just below the surface, we were intently praying to be wrong. We prayed for a magic pill that would take him back to the Dawson he was just a few months earlier; we would wake up and it would just be a bad dream. I was desperately holding on to hope with every inch of my being, hope that we would walk out of that awful place smiling, relieved at how wrong we were.
I told myself that Dawson would look back at old videos and say, “WOW, what the heck was wrong with me back then?” We all would sit around and joke about how silly we were to be so scared that anything was ever wrong.
I was swiftly yanked from my hopeful thoughts as I heard his name called by the stone-faced nurse standing in the doorway. Dawson didn’t even look up from his beloved tiny piece of paper—not responding to his name anymore was now the new normal. We scooped him up and followed the nurse to the child psychologist’s office. It was a tiny playroom with deceptively vibrant, colorful blocks and brightly colored toys. Greg and I sat down on an uncomfortably small sofa, across from the small desk where the doctor sat. She looked over the notes that I assumed our pediatrician had sent over, as well as the paperwork I’d filled out in the waiting room. She asked us a few questions that I don’t even remember answering. I just wanted the whole ordeal to be over as soon as possible.
What I do remember about the endless hour while Dawson was being tested, is that I could barely keep it together. His whole future hung on what that one doctor would say. I remember every task she tried to get Dawson to do, and each felt like a strike against him, over and over again. It broke my heart to see him struggle with the simplest requests. It broke my heart even more that he was being put through such scrutiny, it was an unnatural kind of observation.
I choked back tears as I silently cheered Dawson on to do the very best he could. I willed him to fool her into thinking nothing was seriously wrong and we didn’t need her stupid opinion after all. When the test was over, she sat at her desk with her arms folded and started to speak. At that moment everything faded to black. My ears were ringing and I felt my throat swell as I tried to push back the sobs that were forming deep within my soul.
I remember thinking, So this is what an out-of-body experience is. I wanted to grab Dawson off the floor and run out of that office as fast as I could, but Greg had beat me to it. He picked up our son without saying a word and quickly walked out the door. I just sat there, my ears still ringing and silent tears streaming down my face, realizing that she had actually said what we so desperately did not want to hear, but already knew.
The doctor across the table spoke. “Your son has autism, and I believe it is a severe form. There are places for kids like him as he gets older,” and “He will most likely never speak or go to a regular school and will probably need lifelong care.” How the hell did she know all this about our eighteen-month-old son after only one hour with him? To hear someone say that Dawson had autism, to say it out loud and then continue on to tell me how severe it was, was a blow I was not prepared to receive. She handed me a single sheet of paper with all the therapies he needed and a bundle of pamphlets with information for newly diagnosed families.
Was this real? It felt like my son had just died, but there would be no funeral or memorial service to mourn the life we dreamed he would have. That dream was now, in a matter of one hour, gone forever. The doctor gently patted my back, told me she was sorry, wished me luck and said to call with any questions. Seriously? Any questions?
As I slowly walked through the parking lot to the car where Greg and Dawson were waiting, a movie of Dawson’s short little life played on fast-forward in my head. I climbed into the passenger seat of our SUV, while the sobs I had stuffed down for over an hour suddenly came pouring out of me like dark, heavy rain.
CHAPTER 9
THE DRIVE HOME FROM THAT dreaded appointment seemed almost unreal. I silently watched the cars next to me, looking at the people inside. Those people looked so happy and content in their lives, smiling and laughing with the others in the car. Didn’t they know my life and my son’s life had just ended? How dare they continue to have a happy, normal life while ours was coming apart at the seams. I was suddenly jealous of them and knew that I would never be happy or smile, ever again.
My thoughts were racing. Greg was silent next to me with the most sullen look on his face that I had ever seen. We said nothing as we pulled into the McDonald’s drive-thru to get Dawson his beloved french fries.
I immediately thought of Karie, my dear friend who I’d become extremely close to, whose husband worked for the Diamondbacks front offices. Her daughter, who was just a little older than Dawson, was blind with cerebral palsy, and Karie was dealing with her own devastating situation. I had confided in her about my fears that something was wrong in the few months leading up to Dawson’s diagnosis, and we often leaned on each other when it came to our precious, imperfect babies. I felt comfort that I was not alone whenever we had our long talks, and I needed to hear her voice immediately.
My hands shook uncontrollably as I dug my cell phone out of my purse and called. When Kari answered, I could not even get the words out of my mouth as my throat swelled up, trying again not to cry. She knew about the appointment and understood exactly what I was trying to say. As a good friend would, she listened quietly. Once I could start talking she just kept saying “I’m sorry,” which is all I wanted to hear. I didn’t want a pep talk, or to be told all will be okay. I wanted someone to feel sorry for me, not try to pretend it wasn’t as bad as it really was, and she knew that.
I told Greg to pull over at a Barnes & Noble on our way home. I needed more information about autism immediately and wanted to buy every single book I could get my hands on. I walked into the store with swollen eyes and had no idea where to start. Was it where the medical books were? The Psychology section, or the section on Child Development? I had no idea, and my head felt like a lead weight from all that had happened in the last two hours. I walked to the information desk in the middle of the store.
I barely got one word out before the tears started falling again. I am sure the girl at the counter must have thought something was seriously wrong with me, and she was right. I was a mom who felt as if her son had just died, and I needed information fast on how to deal with it.
Then I heard an angelic voice behind me: “I can help you find books on autism. My son is autistic.” I literally fell into this poor innocent lady’s arms.
“I don’t know you at all, but I do know exactly how you feel,” she said. Her name was Gayle. I don’t remember everything she said, but I knew that God had placed this very lady, in this very store, at this very moment to help me. Her son Kyle was nineteen and profoundly autistic.
“Kyle has changed me for the better in countless ways,” she continued, “and the pain you are feeling now will not be forever, but it won’t always be easy.”
Gayle gave me her number that day, and we spoke several times in the weeks that followed. Dawson is now the same age as Kyle was when I met Gayle, and she was 100 percent right about everything we talked about during our long conversations. Her soft, kind voice helped me work through so many hard questions. She was always honest, but also very careful to not scare me with each and every difficult detail. Sometimes she would talk, but mostly she simply listened, which was exactly what I needed during those dark early days. I left the bookstore that day not only with a pile of books, but
with a welcome sense of calmness, thanks to Gayle. She was the first of many autism angels who would come into my life.
For the entire week that followed, Greg and I both had horrible nightmares. Sometimes we would cry and sometimes would just silently hold each other without saying a word. Trying to keep it together in front of our girls was almost impossible. Hayley was old enough to understand how serious the diagnosis was for Dawson, and she was busy doing her own research on autism. For Brenna and Sophia, they may not have entirely understood what autism was, but they knew they had lost their baby brother in a way, and that life was going to be very different.
The girls sensed that Mom and Dad needed some time to regroup and mourn what had happened to Dawson. They were extra patient and on their best behavior around the house, instinctively giving us space. As young as they were, I think they knew their lives as Dawson’s sisters had changed and were likely a little scared.
As much as I tried to keep it together, I cried a lot, and I mean a lot. My eyes were constantly swollen, and I would burst into tears for no reason—just giving him a bath, changing his diaper, or putting him to bed. Everything in our lives was now so incredibly different, like we were sucked out of our old life and dropped head first into a new one, landing with a giant thud.
I remember how quiet Greg was. He has always been a man of few words, but he was absolutely struggling in his own silence. It worried me how much he wasn’t talking about it. Not only was his world at home falling apart, he was struggling professionally on the mound. For something that used to be so important to me, baseball was now the last thing I cared about. I now had more important work to tend to at home with only one thing on my mind—CURE DAWSON.
After a few weeks of crying and sleepless nights, it was time to dust ourselves off, wipe away the tears and get to work. “Applied Behavior Analysis,” also known as ABA if you’re into acronyms, quickly became front and center in our world. It was one of the things written on that piece of paper the doctor gave me, and it was the first one I researched. To me, it sounded like a sterile set of words. I imagined kids in little cages with doctors wearing white lab coats holding clipboards jotting down observations of that child and how they were behaving. I wasn’t that far off in my guess.
I have a love/hate relationship with ABA. The protocol in 2002 was that the newly diagnosed child would need forty hours of therapy a week to have a fighting chance at a possible recovery, and the word “cure” was thrown around a lot. At eighteen months old, Dawson was considered extremely young to be diagnosed and a prime candidate for ABA to work its apparent magic. I wanted to cure Dawson more than anything else in the world.
It was, and still is, no easy task navigating the autism world. There was so much information available, but no clear-cut way to treat it, or one way to go about it. It felt like walking blindly into a long, dark hallway with hundreds of doors; only one had the answer to curing autism, and we had to find the right one blindfolded.
Before we started the intense process of ABA, Dawson’s pediatrician thought it would be a good idea to rule out anything and everything else that could possibly mimic autism or cause symptoms that sometimes appear in autistic children. I had never even considered that maybe it wasn’t autism, or that it could be something else, something fixable! Maybe that lady was wrong, and I would be able to march back into her office in a few months to tell her just how terribly wrong she was.
It took about a month and numerous appointments with every kind of doctor there was. We held out hope that maybe he had become deaf from all the ear infections, or maybe allergic to certain foods. We started a gluten-free, dairy-free diet because we read about how just eliminating those two things could cure autism.
How easy would that be! I thought. We checked for seizures, had MRIs and CT scans. I even prayed they would find a brain tumor. At least with a tumor, it could be removed, and then we’d have a treatment plan to work with. I would have accepted just about anything in place of a lifelong neurobiological disorder with no cure and no treatment plan to follow.
As crazy as it sounds, Greg and I started doing a shot of any type of alcohol we had at home before we left the house for each doctor appointment. Even as I write this, it sounds a little strange, but it seemed to calm our nerves quite nicely. We left each appointment with either more bad news, a shoulder shrug, or a head scratch from the doctor who had no clue what to say about what to do next. That tiny shot got us through each disappointing appointment and the utter frustration that doctors did not know anything about his mysterious disorder.
Dawson wasn’t deaf, he did not have a brain tumor, and the new diet wasn’t curing anything. It was autism, and there was no way around it. It was time to accept it and hit the ground running with this ABA thing that I now was convinced was going to save him. We would be that success story. I knew that in a short time we would be sharing our amazing journey to a successful recovery with the world. We would be on every talk show and news channel in the country, talking about how Applied Behavioral Analysis saved our child and how it could save yours too. That is exactly what my overly excited brain was thinking.
We hired our first ABA therapist, Allen, just as Dawson turned nineteen months old. We turned one of the rooms in our house into a full-fledged therapy classroom, exactly as we were told to do. It was complete with a small table, two chairs, specific toys, and positive reinforcements to keep his tantrums under control. Allen was a kind and gentle young man who had a younger autistic brother and extensive training in ABA. He was eager to start working with Dawson and was confident that because Dawson was so young, he had a good chance of getting better. Dawson was the youngest child Allen had ever worked with, and I wasn’t sure if that was good or bad. I still had the word “cured” tucked neatly in my head, but tried to not get ahead of myself and take each day one at a time with as much patience as I could muster.
Greg and I were not anywhere near prepared for what this type of therapy would be like for our son. The screaming and crying we heard from behind the closed doors was almost more than we could bear. Dawson was only nineteen months old, and it sounded like he was being tortured by a total stranger in our own home. We were allowing it to happen, we were actually paying someone to torture our son.
Greg and I would hold each other, and I would remind myself that it was the right thing.
“This is fucking bullshit,” Greg would angrily say as we sat nearby. “There is no way this can be good for him.”
But we were told over and over by Allen to please be patient, that in the end it would be worth all the suffering. But more than once, the screams and sheer terror we listened to on the other side of that door made us question what we were doing. It made me question what kind of mother would allow this to happen to her own child. Was I actually helping him, or hurting him?
It would go on for two or three hours at a time, at least six days a week, and sometimes two different sessions of three hours in one day. It took everything we had not to burst into that room and demand it all stop. Greg actually did that a few times when he just couldn’t take it anymore, and I didn’t stop him. There is no question Allen cared deeply for Dawson and did his very best to help him. It was unexplored territory for all of us, and we all had the same goal for him, which was to reverse the autism, no matter what it took.
During this time, I was so focused on Dawson I did not see how much Greg was struggling in his own mind. I was no longer the wife he once had who was filled with smiles and laughter; the wife who was his biggest cheerleader at the ballpark and a loving, involved mother at home. I had changed. Autism had changed me. Autism had stolen my son and was now in the process of stealing my marriage.
CHAPTER 10
THE FIRST YEAR OF DAWSON’S diagnosis, during 2002 and 2003, was a blur. I honestly do not remember much about it, other than being consumed by the pressure to get in forty hours a week of therapy for him, doctor visits, and going to every autism conference I could get to. Sadly, I don�
��t remember much about what my daughters were up to in their personal lives. I do remember attending dance recitals, managing playdates and birthday parties for them, but never feeling that I was totally in the moment with any of it.
I knew Hayley was starting to get very interested in boys, and I was trying to keep an eye on that situation the best I could. I think I pretended to be interested in everything going on around me, but if it wasn’t about autism, I sincerely wasn’t. All I cared about was figuring out what happened to my little boy. I was obsessed, to say the least. Extremely tired and obsessed were the only words to describe myself during that time.
On top of all the moving parts going on in our house, Greg was still struggling with the Diamondbacks and just wasn’t looking like his old self on the field. The team made it to the first round of the playoffs in 2002, but was quickly eliminated from advancing any further; it seemed that the magic had run its course. Greg’s hip was really starting to bother him from years of wear and tear, and his numbers were starting to show it. At only thirty-seven years old, he had been playing for almost seventeen years, and we silently knew the end had to be coming soon but never really discussed it. I didn’t want to bring up anything that might hurt his already-suffering ego and just tried to stay as positive as possible.
I don’t know if Dawson’s situation played a direct role in the last year of Greg’s baseball career, but it certainly didn’t help his game. Greg was not always good about sharing his personal thoughts and feelings, but I do know that his only son’s future being as fragile as it was, was terribly painful for him to accept. He was heartbroken, and I knew that. I also knew he constantly worried about me and how I was handling everything while he was on road trips. Even with all the help I had, it was incredibly emotionally and physically draining at times. I was continuously sleep deprived because Dawson was up so much at night, screaming like he was in some sort of pain. I can’t imagine that it did not directly impact Greg’s ability to focus on the game, when I could hardly focus on anything other than keeping my head above water.
Rounding Home: A Memoir of Love, Betrayal, Heartbreak, and Hope with an Intimate Look into Raising a Child with Severe Autism Page 8