Wednesday, December 28, 2011

The Disordered 9/27/04

The Infamous J has been writing so beautifully about "being different" and her experiences special parenting her severely autistic child, CT, in her blog, http://alittlepeaceofme.blog-city.com/ (trackback provided) that, with a tip of the hat and a hearty thanks to J, I am inspired to tackle some of my own "special" relationship issues. J's words continue to ring in my head: "Oddly it never occured to me to pray that she be neurologically organized." When I was a young woman in my twenties I didn't really have a full comprehension of the meaning of mental illness, personality disorders or learning disabilities. In retrospect, my naiveté was remarkable, especially considering the fact that I had taken college level psychology courses. I honestly believed that anyone, except the obviously severely disabled, could do anything they set their minds to doing, and was quite certain that *I* could accomplish anything, with perseverance. I was wrong. I knew that my fiancé was different. He was very intelligent, highly creative and unusual, and I was attracted to him partially because of how different he was from anyone I'd known before, but it never occurred to me that he might be hopelessly mentally ill. I knew him well for five years prior to our six-month engagement and although, looking back, there were two or three little signs I might have picked up on, he must have worked very hard to be what he knew I needed him to be, until the wedding. From the moment of the wedding, he changed, and I haven't seen the man I knew before, in the twenty-three years since. I spent our two-week honeymoon in a panicked shock, wondering what I had done and what I could possibly do next, but it was when we returned to live in my house that the real gravity of my situation became evident. The morning after our return to the US, I reported to work at our local airport, scheduled to fly a three-day trip as a flight attendant for the major airline for which I'd been working for the previous six and a half years. After three days of constant vomiting on take off and landing, it was pretty clear to me that I was pregnant. When I arrived home from my trip, I found my groom there, with his clothes (all he possessed in the world) still in his car. However, all of our wedding presents, which I'd arranged to have neatly stacked for cataloging by family and friends after our big wedding, were all put away and separated from their gift cards. He seemed pleased with his work, proudly displaying the stack of gift cards in his hands, and was deeply disappointed (in fact, angry) that there was no glowing approval from me, rather I was apoplectic, knowing that I no longer had any way of determining who gave us what, for purposes of writing thank you notes. It's been downhill ever since, and I now know that, in a process of intense denial that continues until this day, he had kept secret from me his mental illness, an almost untreatable personality disorder, which was diagnosed long before, in seminary. So, nine months and thirteen days after my wedding, at the age of twenty-eight, I gave birth to our first son and learned what it really, really means to fall completely out of my mind in love. Even though I had never been a mother before, I knew something was different about this baby from the beginning. He could hold his head up at birth, but could not control the movement of his eyes, which darted around independently of each other. He could turn himself over from front to back at three days old when we got home from the hospital. He slept very little, was highly irritable and difficult to comfort, but when he was energetically entertained he was gleeful and unusually animated. He was alert and advanced in his physical development, sitting at two months, crawling at four months and running and climbing as his main means of transportation before he was nine months old. People would gasp and exclaim, "He's a genius!" and all I could do was sigh, knowing that more likely the truth was that he was seriously hyperactive. It was 1982. The airline industry was recovering from the air traffic controllers' strike that had occurred when we were out of the country on our honeymoon. I could only hold three-day trips when I was called back and denied extended leave when our baby was nine months old. Unable to keep a sitter (they would take care of him one time and then never come again), or depend on my husband for any kind of support, I realized that I couldn't leave the special needs baby home alone with the special needs husband for three days and expect to come back and find everyone safe. I loved my job and had always believed that I would work for this airline until my retirement, but there was only one decision to make. I quit the job to take care of the child, and steeled myself in my determination to support my husband's entrepreneurial endeavors and make the family work, somehow. As time passed, I got used to not being able to take our oldest out in public for any length of time or leave him with anyone, although we did eventually find one wonderful young woman, the oldest child of the mutual friends who had introduced us, who was fabulous with him and a true Angel to me. At three, his hyperactivity was obvious and we were known to all the staff at our local emergency room, so I found a Montessori school for him, where he excelled at math but couldn't seem to learn to read. I knew he wouldn't survive at the Catholic school where we'd intended to send our children, the same school my husband attended as a child, a short walk from our house. I also strongly suspected that in our local public, he would have quickly been placed in a Behavior Disorder class, and stigmatized for the rest of his academic life, so we scraped together every penny and enrolled him at the Episcopal elementary across the street from our home. By the end of the first grade, he could do math and spell, but still couldn't read, and after extensive testing he was diagnosed with severe ADHD (Attention Deficit Hyperactivity Disorder) and additional Learning Disabilities. All I can say is that mothering this child has been like riding a bucking pony since the day of his birth. He was always in trouble, and even in the early grades he was always the first child in detention for demerits in the Episcopal school, but they loved him and they helped me and he stayed there, with the help of LD qualified tutors, until it was clear that he wanted out, to be at the local public high school with his older, naughtier friends, in the fall of his 8th grade year. We withdrew him from the Episcopal school, amidst support and tears from everyone. I will never forget the mother of one of his friends asking me, "Aren't you worried that he might fall in with the bad crowd at the Big Public?" I laughed out loud. "No," I lamented, "I'm quite certain that he will define the bad crowd!" There is often a light side and a dark side to mental illness, personality disorders and learning disorders, a gift on the other side of the curse, as J has suggested. The hard stuff makes us what we are. My husband is one of the most genuinely creative people I've ever known, and although I'm frustrated that he cannot think inside the box, ever, his outside the box thinking has led to innovations that may very well be genuinely important and hopefully, will provide something of lasting value for us to pass on to our children, somehow making it all worth it. On the other hand, our wonderful oldest son, after tearing a demonic swath through high school that led us to ultimately remove him from the Big Public and place him in the Tiny Alternative private school in the spring of his sophomore year, is the strongest personality I've ever had the privilege of knowing and can light up and "work" a room like no one else I've ever seen. I remember his high school years as angry and estranged, but he's been different since he went away to another state for college in the fall of 2001, and realized how close he had come to missing that experience. It hasn't been easy, and in the course of parenting him, I've come to terms with the fact that I am also ADHD, and have been treated for it over many years, which has greatly helped me, not just to be a better mother to him, but also to understand all of our special needs, gifts and deficiencies. He's a twenty-two year old junior in college, majoring in Communications Studies, a golden-tongued charmer who writes like an angel but cannot do math (a reversal of the earlier manifestation), and a great comfort to me, even from a distance (perhaps better from a distance?). He "handles" his father considerably better than I do, and I hope they make fine business partners one day, for both their sakes. I take great comfort in knowing that if something happened to us, he would know what to do with the patents. At the end of his first grade year, armed with the results of the barrage of psychological tests, I met with his Episcopal School Headmaster to discuss his future, or lack thereof, and will never forget that man's words to me: "They don't want these kids at Catholic High (Dad's alma mater) and these kids don't go to college." He might have been half right, but in my heart at that moment I knew he was wrong. _________________________________________________________________________ Note: Although I have attemped to add a link to the Infamous J's blog in my first paragraph, it doesn't seem to be showing as a link. Additionally, although I have entered the URL of her recent entry which inspired me, it's not showing under trackback. Apologies. :-\

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