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CHAPTER 1 A Shattered Family Two years ago, December 31st, 1999, my husband, Fred, and myself worked at Ameritech (now SBC) in the suburbs of Chicago. I oversaw three key computer applications for Ameritech’s business division. As I rang in the new millennium in the basement of our suburban home, working past midnight to ensure all my areas of responsibility at work were Y2K ok, I had no idea what awaited my family in the New Year…our own personal Y2K meltdown. That February, we would experience the complete shattering of our household and the sudden death of what we had known to be our family, and with that, all our hopes and dreams…gone! Both Fred and I held an M.A. in Finance and worked at Ameritech, the largest local telephone provider in the Midwest. Fred had been there seven years and I had been there for six. The company was undergoing massive reorganizations as it had recently been bought out by SBC. We now numbered over 200,000 employees. Impressive. We were both doing quite well in our positions, but, ever since my mother had died of ovarian cancer three years earlier, we had made the decision that we wanted out of corporate life. Each day, we realized more and more the need to spend more time as a family. By the turn of the millennium, we had two children, Anika, age seven, and Zachary, age two. Little did we know that the preparations we were making to leave corporate life would prove so valuable to our family. Fred worked as a product manager in Consumer Services and I worked as a manager overseeing three key computer applications in the business division of the company. Although, at first, I made more than Fred did, he moved up the corporate ladder rather quickly. He always joked about the fact that “as you get higher in corporate life, you get paid more for doing less grunt work”. My workload was horrible, often requiring long evening and weekend hours. I worked with a dozen programmers and/or consultants on a daily basis. The hours were long and the headaches numerous, but I actually enjoyed what I did, tremendously, and herein lies what would become my biggest source of guilt. I was the one who loved my job. I was so wrapped up in my work, I was missing what, in retrospect, should have been so obvious. Ameritech was a great company to work for. I cannot say anything against a company that was so good to my family and me. After all, it was because of people at Ameritech that I had been allowed to completely do my work from Canada for close to a month as I also cared for my dying mother. My work was such that I could do it at any time of the day or night, and from almost anywhere in the world, provided I had access to a phone line and a modem for my computer. I am eternally grateful to the people at Ameritech for having had the flexibility and compassion that allowed me to be there for my bed-ridden mother when she needed me most, until she took her last breath. Granted, I did not have a backup and my job impacted payroll for sales. But, still, as I say, though it is a sad reality, “Presidents get assassinated and life goes on”. Ameritech would have managed without me somehow. They were under no obligation to allow me to do my work from another country for a month. So, for what they allowed me to do, I thank them from the bottom of my heart. Ameritech was not the problem. It was corporate America, in general, and the fact that it can and will consume your life. By the time you were home, you were lucky to see your children for an hour or two before they went to bed. When I worked in downtown Chicago, I did not even see my children in the morning since I was on a train by 6:45 a.m., before they were even up. If the day went well, I was back at 6:20 p.m. At some time during my last year at Ameritech, Fred had been kind enough to once calculate for me that I spent six weeks of my life commuting, each year. My typical commute took close to three hours out of each and every workday. Fred’s computation solidified my commitment to a lifestyle change. It prompted me to convince my immediate supervisor and my General Manager to allow me to do the same job from an Ameritech facility where Fred also worked, just fifteen minutes from home. I also pushed for more work-at-home. In the last six months I worked for Ameritech, I probably worked at home two days a week. Fred also worked at home a couple of days a week. He had been lucky enough to do that for a few years and it really helped out with the children. When I also started to work at home, the extra computers and phone lines we purchased quickly paid for themselves. Between the two of us, we came to need very little help from our old babysitter, Jennifer, who lived just four doors down. We would go to the office for important meetings only, when we “had” to be there. The problem with more work-at-home and being “out of your supervisor’s view”, however, was that we felt an internal pressure to “prove” we were working and therefore, did even more to maintain our work-at-home privileges. So, although I often worked at home, now, I frequently started at 6:00 a.m. and went straight into the evening hours. In spite of it all, I felt I was “there” for my children, but, I was so exhausted…and so was Fred. Although work-at-home had seemed to be the answer to our prayers, in looking back, I can see that we only worked harder, became more tired, and spent less quality time with our children. We were in a whirlwind situation, constantly on the go. We had five phone lines on eight various jack combinations to allow for the most flexibility possible in our home office. I could be working up to three computers at once, reading email on one, testing applications on another and looking up data for sales or customers on yet a third... all while on a conference call... never taking a minute to look at what was staring us in the face. For the most part, while we worked, Zachary was the perfect two year old, playing quietly by himself. With no debts and enough saved up to hold us over for some time because we had saved every bonus and as much of our salaries as possible for six to seven years, Fred and I realized we were exhausted and had to pull the plug on corporate life to maintain our own sanity. We figured we could invest wisely and go from there. Little did we realize that the time was ripe for another member of our family as well. We both held an M.A. in Finance and I knew corporate America would always be around should things not work out and we had to go back. In our minds, however, there would be no going back. Fred and I were very similar in that when we made a decision, we went with it, and moved fast. That was one thing we had absolutely hated about corporate America. It took forever for people to make a decision. It got to be the very reason I decided to quit. I hated what I had to put programmers through. Often, they had to work sixteen-hour days, for day after day after day. They had it worse than I did, but I was one of the people who had to “beat up” on them to get things done. On January 27th, Fred and I made the decision to leave the company. It would be in the next month or two. We were not sure of the exact date, but we would start to prepare for it, looking into obtaining private health insurance, arranging for the transfer of our IRAs, etc. With Ameritech’s purchase by SBC, all business units were being reorganized. My group was already overworked, and still more was being poured on. I was in our basement when another “just do it” memo came through from my General Manager. As it was, I supported hundreds of salespeople, each of whom could come to me directly for answers to their questions, as well as several key groups within the company. I worked with Finance, Marketing, Sales and I/T on a daily basis. Fifty to one hundred incoming emails and thirty or so phone calls a day was not unusual for me. And, for most of these, I had some kind of “to do” or “investigate”. I had become an “efficiency expert”. I also had four people reporting to me directly and trained them constantly. One day, I had about ten minutes left before going home and I felt totally drained. I commented to my co-worker of four years that “these days were just too much”. We began talking about our positions and the fact that no sane person would ever want our jobs. For fun, I counted the number of emails I had personally sent out that day...eighty-eight...and that had not included the research I had to do, meetings I had attended, calls or the emails I had received. It was just too much! Two key persons who reported to me had been informed of my desire to leave the company about one month prior to my actual leaving. I wanted them to understand why it was so important they had a grasp of all areas of my responsibility as well as their own. In addition, I had advised my key programmers approximately one month prior to my departure that I was on my way out. When yet another “just do it” memo from my General Manager came in that morning, on Friday, March 17th, 2000, I had had enough. This particular task/request clearly belonged in another group. The VP needed the information in less than a week. I was an excellent worker and even I knew that to do this well, run the necessary reports, etc. would take closer to a month. This was a critical initiative with huge legal implications and I was no fool. In the past, I had been given tasks even my division President and VP were deathly afraid to see go wrong, the implications for the company being so huge. That was it! I had had enough of corporate life. I went straight upstairs and informed Fred that I was going in that very morning to submit my resignation. We had both prepared for a long time, cleaning up most of our issues at work, just in case, but now, it was time, at least for me, to pull the plug. I wanted a lifestyle change and I wanted it now. Knowing there was no going back, I finished cleaning up my affairs in the morning, and wrote my final memo at 12:15 p.m. My boss got it at the same time everyone else did. It simply stated that effective March 17th, 2000 (today), at 12:00 p.m., I was resigning from my position at Ameritech. I stated I would miss those I supported, but it was clearly time for me to move on. There would be no going back, no second thoughts, no persuasion to stay for more money or more help. I had sent that memo out to over one hundred people at the same time – my decision was final. “It was time for me to move on”...I had no idea how true those words would be even a week from then. Looking back, I had often told Fred that it was as though I was somehow being “pushed” by an invisible hand to quit, right then and there. After all, I had always been such a “good employee” and this was so “unlike me”. I had always planned on giving notice when I left and at times planned to give over one month, but, that particular morning, it was like there was an overwhelming force within me to quit that very day. I felt no guilt though. Those who most needed to prepare for my departure had had over a month to do so. I had cleaned up everything on my desk. It was not as if I had left the company with a mess on its hands. I had been much more responsible than most would ever be. The force within me that morning, I cannot explain, but I did it… I quit! Had I gone just one more week in that position, my life would have been very different. More than likely, I would have remained with Ameritech until “retirement”. But that was not to be, something inside told me to quit that day! Over the weekend, Fred and I discussed our life and where we wanted it to go. He went in that Monday and submitted his resignation. He had also prepared for well over a month, cleaning up all he could prior to leaving. I think both of our bosses must have had near coronaries. This was so “unexpected” from both of us. We had both been such “good employees”. We had jobs many would have envied. There was no going back for either of us. We were spending entirely too much of our lives working and our children were not getting the attention we believed we owed them. We worked long hours for “our children”, to give them the best of everything, but we were not giving them our time and that was what they truly needed. It was not Ameritech, but rather the slow stealing of one’s life by corporate America in general, that we could no longer take. Ameritech had actually been a fantastic company to work for and I was very thankful for everything that company had done for me, such as allowing me to work from Canada for three weeks while I also tended to my mother who was terminally ill with cancer. I will never forget that. Not many companies would have done the same. We knew all corporations today demanded more and more from their employees though. We wanted a life style change, one that involved more time with our children and with each other. We had always looked at corporate America as a stepping stone, and now, it was time to take that next step and leave it all behind. I remembered writing in a small journal I kept, March 17th, 2000, I quit, March 20th, 2000, Fred quits, March 21st, 2000, new life begins. Once again, I had no idea, how true those words would soon become. Just before quitting, in late February, Fred and I had taken a quick trip to Canada to visit family and friends. We knew we were getting close to pulling the plug on corporate America and needed some time to think. It was during that visit that my sister-in-law, Christine, took aside her brother and told him she thought our son, Zachary, showed some of the same signs her son, Andrew, had shown when he was young. Andrew had been diagnosed with Pervasive Developmental Disorder (PDD) after a long period of previous misdiagnoses. She had mentioned that Pervasive Developmental Disorder was on the same spectrum as autism. I did not know of this conversation until after we had returned home and quit our jobs. I do not know if Fred was “in denial”, did not want to change our plans or if he just did not want to alarm me, but it would be March 22nd before he revealed to me this conversation had taken place. That night, March 22nd, 2000, was a night I would never forget. The very thought that Fred saw something to what his sister was saying ignited within me a desire to prove to him and to myself that there was nothing wrong with our son. I rarely logged onto the Internet to research anything, but that night, I did. I typed the word “autism” and got numerous “hits”. I visited some of the web pages and researched the topic. I read from 8:00 p.m. until about 3:00 a.m. One site I found was that of the Defeat Autism Now (DAN) conference of 1999. I printed an article from the site, as I had done with so many others, and put it in the stack to be read later that evening. That particular article was the first one I read. As I went through the pages of this DAN article, Fred sat nearby. “Oh, my God!”, I said, “Fred, a lot of the behaviors Zachary has are classic signs of autism!” I began circling those behaviors I had seen in my son… behaviors that, in the past, had been so simple to explain away. There, in front of my eyes now slowly filling with huge tears, messaging in black and white to my brain which could no longer be incredulous, were words describing symptoms and behaviors I knew to be those of my son, words that made my heart bulge so that it felt as though it was about to burst within my chest. How could this be? How could I not have seen this sooner? We had for a year or so thought Zachary was not developing as quickly verbally as his sister had, however, we had been “reassured” by our pediatrician that boys were usually “just a little slower”. We had raised our concerns on several visits to the pediatrician. He finally agreed to have Zachary undergo a hearing test, a test he passed with flying colors on October 20th, 1999. A notation from the clinic indicated the child was in a bilingual home (I was French Canadian) and that he had had several ear infections in the past. I had brushed it off. Maybe they were right; maybe he was just a little slower. I spoke to my children only in French; my husband spoke to them in English. Maybe Zachary was a little more confused with that than Anika had been. She had had numerous ear infections also, and she had turned out ok. We just needed to give Zachary a little more time - that was all. Time would prove Zachary was ok. How easy it was to have brushed it all off! Perhaps it was a subconscious defense mechanism, that mechanism of denial that so readily lurks within all of us when there was that first hint of something wrong. But, the signs I so readily ignored, in retrospect, were clearly there. I just did not see them! I had not recognized them! Bits and pieces of the puzzle started to flow to my brain, and soon, the memories of all the signs I had discounted came together like a deluge, filling my brain and triggering now unstoppable neural activity from the constant flow of small memories I now recognized to be pieces of a larger puzzle. How could I have missed all this? How could I not have put all this together? Just in this quick reading of the DAN article, I had circled at least ten to twelve behaviors Zachary was exhibiting. Large tears flowed incessantly down my cheeks. I could barely breathe. My heart shattered into a thousand pieces. As I continued to read further, everything made sense now...the pieces of the puzzle were there. The constant spinning of wheels or other circular objects and the staring at ceiling fans I had so easily discounted to Zachary’s fascination with mechanics. The gazing at ceiling lights I had brushed off to human love of lights, which of course, went hand in hand with his constant waking, two or three times at night due to what I believed was his fear of the darkness and need to be hugged by his mother. His never-ending energy that manifested itself in constant running back and forth from one end of the house to the other, I had attributed to his being in the house most of the day. After all, our neighbors had pit bulls and rotweilers and I could not leave him outside without supervision, he was only two…. and I had to work during the day. As I continued to read, signs I would not have recognized as symptoms of autism now jumped out at me. I was overwhelmed with more emotions than I could handle - disbelief, fear, anger, distress, guilt, anxiety... hopelessness. It was now about 3:00 a.m. I had read all I could take for now. I went to bed, physically and emotionally drained and cried myself to sleep. When I awoke in the morning, Fred was not next to me. This did not alarm me nor did I find it unusual since his farm background had never left him and he was usually up by 5:00 a.m. anyway. As I lay there in bed, I asked myself: “Was this just one of these bad dreams that seem so real? Did I just dream that Zachary had autism?” As I continued to lay there for another fifteen seconds or so, the atrophying reality set in, I had not dreamed it…my son had autism! I could not move a single muscle. Only my shattered heart pounded within my chest. The function was there but its life had been sucked out of my body. I was but a shell... a body without life. All the hopes, the dreams, for my son, for my family, for myself…gone! The person I was yesterday died and this hopeless, joyless person had taken her place. The tears flowed, again. Anika entered the room and saw that I was crying. In her sweet voice, she asked me what was wrong. I told her that her brother was very ill. She looked at me, perplexed and said that she had just seen him upstairs, playing in his bed and that he must be ok now. I tried to explain to her that this was a sickness that was hard to see; after all, I myself had not seen it until just now. Fred and I took the following week or so to read all we could about autism, discuss what to do, and to grieve. I got dressed that first morning and went to the nearest pharmacy. One of the articles I had read the night before stated that cod liver oil was supposed to help autistic children because it contains natural vitamin A. The article stated that natural vitamin A helped reduce “side glances” so often exhibited by autistic children, a symptom Zachary exhibited, a sign I had failed to recognize for what it truly was. As I sat in my car, waiting for the pharmacy to open, I cried. Ten minutes later, I went in, got the cod liver oil and went back home. I lived only two blocks away but it was difficult for me to drive the short distance, my mind so obviously not on driving; I unintentionally cut off another driver, my eyes were so filled with tears that I had not seen him. Although I had died inside, I had to do what I could for my son, and I had to start right away. I painfully felt my internal death, my shattered heart and cried each and every day and night for the next ninety days. As much as I wanted to be strong in front of my daughter, it just was not within me. I could not hold back the tears. My daughter tried to console me. Fred cried in private. He wanted to appear strong not only for me, but for our daughter also. There were many, many times though, I saw he, too, had been crying. We told Anika that Zachary had something called autism. It was difficult for her to understand. To her, Zachary was the same he had always been. I began to explain that autism was something not easy to see, that it could take years before you realized someone had it. She asked whether or not you could “get rid of it”. I explained how a few children seemed to “get saved” but that it was very rare and that many children with autism were possibly “mentally retarded” as well, meaning that they had a very low intelligence or ability to learn. As soon as Anika learned that some children do “get saved” she told me that she would help me “save Zachary”. It was then and there that I decided this would be true for our Zachary. We would do all we could to “save him” from the clutches of this terrible monster. A week went by. We were waiting for our personal medical insurance application to be approved. We had been informed by the insurance provider that applications usually only took two weeks for approval. Fred had sent our request in quite a while ago, much longer than two weeks and we had yet to hear back from them. It was now March 30th, 2000. Still there had been no answer from the insurance company. I could not wait any longer. We were on COBRA, a temporary health insurance. I knew Zachary’s visit would be covered through that. I got up, called the pediatrician’s office and asked to schedule an appointment with a new pediatrician. I requested a visit with a new, young woman pediatrician, Dr. Johnson, since the pediatrician I had had in the past had recently moved to another clinic. I informed the nurse of my suspicions and stated that I did not want one of those five or ten-minute visits, but rather thirty to forty-five minutes to discuss my son’s situation. The visit was scheduled for April 3rd, 2000.
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