Autism then and now

  It was October 1996 and my son Nicholas was three years old and attending the public preschool program at a local elementary school. After I dropped him off one morning and was about to leave, his speech teacher stopped me in the hall, took me to the side and began to explain, “Everybody (on Nicks team) have been talking and are afraid to approach you about such a sensitive subject, not knowing what your reaction will be.” I was a little taken aback and couldn’t imagine what she was going to say. She went on to tell me that they all agreed I might be exhausting to much energy trying to get Nick more assistance and not enough energy accepting that he was not going to speak. She said, very self-righteously, “If you can gain some acceptance it will help him and you in the long run.” Astonishingly, I remained calm and explained to her that I would never accept what she was suggesting. I politely told her that I thought she was wrong and so was everybody else who agreed with her, and that Nick would speak and I would prove him or her all wrong. She said condescendingly that she hoped I was right. It was obvious that she did not mean it.

    I cannot believe Nicholas is turning fourteen this year. When Nicholas arrived, I had already been a mother for five years. My first son, Billy, a strong willed, inquisitive little boy had taught me many things, such as; how to survive on very little sleep, how to put toys back together after they had been meticulously taken apart, and the best ways to avoid embarrassment when your talkative little toddler offeres up his “knowledge” to anyone anywhere. He had grown happy and healthy and that was enough for me. I did not think about the future of things or large-scale problems, that is, until Nicholas was born.

    Growing up and even after I had already become a mother for the first time, I had never considered myself a very strong willed person. I lacked confidence and was always second-guessing myself. Perhaps that explains my apprehension when I began to notice “strange” things about my new baby. I tried to push them out of my mind but eventually it began to consume my very being, swallowing me up whole.

    It was January and Nicholas was about three months old when I first began to get this eerie feeling in my gut that just would not go away. I couldn’t put my finger on it yet but I knew there was something not quite right. The feeling in my gut grew rapidly and by his first birthday, I had begun to doubt myself in a serious way. I would ask his doctor at every visit if he noticed anything wrong but time after time, he would say there was nothing to be concerned about. From the outside, everything looked normal. The doctor suggested that maybe I was just comparing him to his brother too much. I’d leave the office feeling guilty as if I was unfairly judging and comparing my own baby. Could I not just find joy in him? Why did I constantly compare him to every other child and why could I not shake that lingering feeling of doom? I learned that comparing babies is just something that we, as mothers, do and even more so when your baby is developmentally behind.

    It was his second birthday and our closest family members and friends were gathered at our house. Nicholas sat in his high chair, feet dangling, his thin red hair parted to the side with his beautiful blue eyes gazing solemnly. His mouth unsmiling, he seemed so overwhelmed by the excitement. His younger cousin, more enthused than he, let out a gleeful scream and Nicholas looked like he had just been assaulted and proceeded to let out a blood-curdling scream. “Maybe the seatbelt in his chair is pinching him,” his great grandmother suggested. “That’s just his personality,” said his grandpa. “I think he’s just lazy.” “Maybe he just doesn’t like birthday parties,” someone else suggested. He did quit crying eventually but he was apathetic for the rest of the day. Everyone seemed to have his or her own opinions but nobody suggested what they were all thinking, which was, that something else more serious was going on. No, that would be entirely too painful.

    The renunciation on my family’s part and on the doctors’ part only fed my self-doubts. I soon became obsessed (an emotion that would eventually inhabit the rest of my life in some way or another.) I could not comfortably accept that my toddler preferred to stare at a clock or a fan to playing with any toy ever made or that he was afraid of his toothbrush. I could not wrap my mind around the concept of actually FEARING a toothbrush or running water. Why would he be afraid of a blue bathrobe? I couldn’t understand why he would look past his grandmother when we would visit her to find her sweeper or why it was SO important to him that it be located in the exact same place. Then he would just push it back and forth repeatedly. What was this? There was a difference between him and his brother that I couldn’t put into words but I knew deep down in my soul that something was horribly off. I worried myself so much that I became physically ill.

    My relationship with my older son began suffering and he was beginning to have trouble in school. My marriage was not even occupying a burner, it had been removed from the stove all together. I knew I had to do something but I had become so insecure that the thought of confronting these issues literally scared the hell out of me.

    My mom, who had also been secretly feeling uneasy about things, decided to confront me while we were folding laundry one day. Coming right out with it, she just blurted out, “Honey, I think something might be wrong with Nicholas and I think you feel it too.” She was right but hearing her say that sentence on that day gave me a feeling I will never forget as long as I live. It’s still hard even after twelve years to think about that day and the many years that were going to follow.

    By February, when Nicholas was a little over two, I picked up the phone and called the pediatrician, opting to do it that way rather than face to face. My thinking was that I could be braver over the phone if he tried to dismiss my concerns again. When he came to the phone I nervously explained the situation and stated my concerns while trying to let him know that I wasn’t trying to second guess him (boy, did I have a lot to learn, I was still operating under a false sense of doctors know everything and are never wrong.) He told me to take Nicholas to Children’ Hospital, to the Center for Developmental Disorders. I called them immediately and was told we’d have to wait until August. It was going to be a very long summer that year.

    Our appointments were spread out over two weeks and then we would have to wait for them to call us with the results. We saw a developmental pediatrician, speech pathologist, nutritionist, special educator and a psychologist, just to name a few. Many visits would be on a higher floor and since Nicholas was petrified of the elevator and the closed-in corridor of the steps, we would have to walk outside and around the entire building to get through an entrance that was on the actual floor that we needed to be on. With each visit Nicholas grew more fearful. We were all on an emotional roller coaster for weeks. After each person had seen him, we had to wait for them to call us back and then they would consult with us as a team to discuss the findings.

      We finally got the call to come back for the consultation. A part of me was glad that the waiting was finally over and we would soon know what we were dealing with, and the other part of me was scared to death of what they were going to tell us. The day of the meeting, I remember waking up early and feeling sick to my stomach. The car ride to the center was unusually quiet. My husband and I speculated about what we thought they might tell us, but then the car would fall silent again. We both tried to be brave and seem confident for each other, afraid that if we sensed each other’s fears it would be admitting somehow that there was something wrong. Sadly, neither of us was prepared to accept that idea.

    When we arrived, we held hands all the way to the meeting room but we didn’t speak a single word. The room that we were meeting in was extremely small, with pale green walls. It was raining that day and the sound of the rain hitting the window made the room seen even gloomier than it already was. There was a table and five chairs and sitting on one side was the developmental pediatrician, who would later became the director of the Kelly O'Leary Center for Pervasive Developmental Disorders, a psychologist, and the head of the team, Dr. Rubinstein.

    Dr. Rubinstein was an intimidating man. He was older and had a presence that could be felt. His wisdom and reputation seemed to envelop him. He would later have a library at that hospital named after him and shortly after that; he discovered a disease (Rubinstein-Taybi Syndrome) that would also be named after him. We walked in and sat down at the table and immediately I felt my mouth go dry and my hands began to sweat. The pediatrician spoke first saying, “We want you to know that no matter what we tell you today, Nicholas will still be the same person he was before you came here today.”

    Instant panic ran through my body. Nothing could have prepared me for what they were about to say next. “We think that Nicholas might be autistic.” Autism? Autistic? Autism!………. It was at that very moment that my life and who I was to become took a sharp detour. Life was divided in two that day because there was before I had heard autism and then after I had heard it. I have never seen anything the same since that day. The room began to spin and it was as if my mind had left my body, time had stopped, and I was trying so hard to wrap my brain around what they were saying. The only things I remember hearing were, “neurological brain disorder,” “lifelong,” “no cure,” and “good luck.” That was it. I felt like I was having a really bad dream, and now we were on our own. I thought I was either going to throw up or pass out. I looked over at my husband and he had turned a shade somewhere between white and green. We walked back to the car, silently, both of us numb.

    We drove home that day and we were permanently changed. The doctor had been right when she said that Nicholas would not be any different, but my husband and I would never be the same.

      Autism. I must have said that word a million times in the weeks to follow. At first I cried non-stop, drowning in the sea of self-pity. How had I caused this? Had I been a bad mother? I questioned my faith and wondered why God would do this to us. It took a couple of years before we could appreciate and understand the blessing before us. I did not know the first thing about autism and I simply wasn’t strong enough to tackle a disability. I was insecure and had no professional training at all. WHAT THE HELL WAS I GOING TO DO? How was I going to give what I didn’t have? (If you can believe, all things are possible to him who believeth. Mark 9:23)

    Self blame; pity, anger, resentment, sadness, shock and grief were among the many things I was feeling. I denied, cried, raged, read and finally began to take action. I read everything I could get my hands on. I began educating myself about the unseen foe that had seemingly captured my child and was holding him hostage. I learned how to assert myself and how to draw from all the resources around me. I quickly learned that the therapists, both at school and privately, were not familiar with teaching people with autism and they would need to be taught themselves.

    I kept hearing there was a small window to teach him in and if there was ever going to be success I would have to utilize this window in the most efficient way possible. I started to realize therapy sessions (privately) only lasted a few hours each week and what he was (or wasn’t) getting at school was not going to be enough. One of the books I bought was called, “The Me Book.” According to the “Me book,” the child had to have at least forty hours of therapy each week. The suggestion to accomplish this was to hire people to come into your home and provide the therapy. We could barely pay our bills, it would impossible to pay for that. I believed however (without a single doubt) that Nicholas could be saved if I could afford the intense therapy.

      After obsessing about it for a couple days, I knew what I was going to have to do. I quickly went into super-mom mode and devised a plan. I would just do the therapy myself! I was going to make do with what I had and I would cure him from this disorder. I read everything I could get my hands on and sat in on every therapy session (privately and at school) taking notes. I began organizing our day so that he would be learning something at all times (driving, bathing, eating, shopping, etc.) I pushed him when I thought he needed pushing and I pulled back when I thought that’s what he needed. I taped a picture/word card on every single thing in our house and drilled him constantly. I started babysitting two children his age and turned our house into a learning center. I utilized the time with the two children for socializing and I was being paid to do it! I signed up for free meeting groups and seminars and training sessions. I read every book and tried a combination of many therapies.

    Before long, Nicholas started making progress and he did learn to speak. Not only could he speak but he was speaking well. We moved from that county after that year and I was able to prove before we left that I hadn’t wasted my time or energy in the wrong place.

    Public school systems and special education (IDEA) is a book length discussion in itself and I tackled that as aggressively as I did when I taught Nick to speak. I memorized the Ky. Administrative Regulations and slowly learned how to be an effective advocate. (At least I thought I knew them well but I found out many years and mistakes later that I didn’t know the first thing about the “system”) The Public school system is so twisted and deceitful in the special education department that I think many people would be shocked if they knew what was going on behind those closed doors.

    I was retaliated against for advocating on behalf of my boys and in the midst of that, I lost a job, a house, and a ton of money in legal fees. In my mission to save my son, I neglected my marriage and fell short with my oldest child. I am now divorced and sorrowfully watching my oldest son try to balance being a young father himself while dealing with legal consequences and an insatiable addiction. I can’t help but wonder sometimes what I could have done differently and could I have saved us all? I try not to dwell on that and try to keep my focus on the future. I can not change the past but only take what I’ve learned and try to make it better going forward.

    Today my youngest son Nicholas, who towers over me at six foot tall, looked me straight in the eye and with a very pure yet serious look, asked me if I thought people get mad at times because he has autism. I quickly explained that I don’t think most people even know he has autism because he does so well and what he is experiencing is mostly regular teenage boy issues. Seizing the moment, however, to remind him that he should be so proud of himself because he has accomplished so many things, he was quick to express how he saw things.  "MOTHER, didnt you teach me to talk? Then you should be proud too.” Before I could even wrap my brain around what he had just said to me, he immediately changed the subject and jumped up to get on the computer. I suddenly remembered that all I had ever hoped for was to hear him tell me he loved me without a prompt.

      What he has given me is something so divine that there are no words to even describe it. (If you can believe, all things are possible to him who believeth. Mark 9:23)

    We have hurdled so many obstacles and there are still many more before us but I do not worry. The future is unknown and God willing, I will be there rejoicing in his every accomplishment. I am so lucky that I was chosen to be his mother and we were blessed again a little over five years ago with a daughter who has an uncanny ability to understand and accept Nicholas for the special person that he is.

      When I am lucky enough to ease drop on their conversations, I get a feeling inside that could never be put into words. I look at my mysterious young man and wonder the road he is on and where it will lead but I put all my faith in God to lead the way.