Pretending to be Normal Read online

  One of my parenting problems is grounded in my inability to generalize information to specific situations. I am only a good problem solver under two circumstances: if there is no real right or wrong answer, for instance when I am writing a creative fiction story; and if there are very clear cut answers, for example the kind that can be found when I design and conduct research studies. When flexible variables affect the situation, things like human emotions, social mores, hidden agendas, and personal biases, I am left without a clue. Most things that involve children seem to include variables I cannot readily identify. Unfortunately, this means I am not a very consistent-minded parent. I approach each new obstacle we come to as if I have never met anything like it before. I end up spending too much time analyzing and rethinking what kinds of reactions I should have to my children’s behaviors. I have my rules, but it seems my daughters always find new ways to bend them. Each bend requires me to go back to square one in search of a solution to the problem. I am positive this leaves my children uneasy and, on occasion, undisciplined. They know full well when I will be upset with their behavior; that is never the issue. What they cannot predict, is what I might do about it.

  From my long litany of awkward moments in history, one stands out as particularly bizarre, even to my friends who accept my Asperger traits. One afternoon time slipped away from me, leaving me terribly late in picking up my twins from their preschool. I immediately rushed from where I was and what I was doing, and drove myself as fast as I could without breaking the law, to their school. When I got to their building, I ran toward their classroom, right past all the stares and puzzled looks coming my way. I knew it was inappropriate for me to be running down a school hall but I was past the point of worrying about that. I had let my daughters down and I needed to make everything right again. I finally found my twins and was much relieved to see they were calmly talking to their teachers. I gave up my running and slowed my pace to a walk giving the girls time to finish their conversation. The teachers stopped talking the moment they saw me. Their mouths opened, their eyes grew wide and they began to laugh. The girls turned around to see what the laughter was about, but when they saw me they did not even smile. Their little faces looked at me as if they had never seen me before. I could not understand the faces I saw. I did not know why the teachers were laughing and why the girls were stunned. Confused, I asked one of the girls’ teachers what was wrong. She broke into loud laughter and said, «Only you could come here like THAT». Puzzled, I looked at one of my twins as she shouted «Mommy what is wrong with you?» And then at the other twin who could think of nothing to say. I knew then that I had made another error in judgement. When I flew from the beautician’s chair I knew full well I was in the middle of having my hair highlighted and I knew I did not look my best, but I never thought for an instant that anyone would be so shocked to see me like this. I did not think I looked that horrible. I was so surprised to see the reactions around me. To me, my being late had one solution: get the girls as quickly as I could. It did not matter to me if I was covered in red dye or not. It did matter to my daughters. One twin cried all the way home and the other kept finding new ways to tell me how angry she was at me. I did the only thing I can do during times like this. I made an apology and told the girls I hoped they knew I had not meant to upset them.

  I worry a lot about the influence I have on my daughters’ self-esteem and their happiness. I do not want to fill their lives with anxiety or shame. My concern for them pulls me toward the mainstream even if I bruise along the way. I feel badly I do not encourage them to have many friends over, that I cannot help them with their math homework, that I have to cheat to help them with their spelling. I regret that small talk with the parents of my daughters’ friends is not easy for me. I am shamed when I do not know how to act. I do not like myself very much when I hear myself say, «Be quiet! Stop. Slow down. I can’t keep up. Please don’t talk to me all at once,» when my girls are only happily excited to share their day with me. And I hate it each time I realize my daughters have been my teacher more often that I have been theirs.

  I know life with an Aspie mom can be very difficult on children. In my case, I can be extremely invasive and obsessive and blunt and loud. I routinely assault my children’s quiet and their reflections. I say the wrong thing at the worst time, tell too many stories with too many metaphors too loudly and too fast. I make the most unusual requests and remarks, take things too literally, obsess on the words and actions of others and typically, I am the one who never quite gets the point. I try to reinvent myself, but of course, this is taking time. I find I must settle for the apologies and then something more. I am learning to find ways that explain to them who I am in words they can understand.

  Luckily, honesty and forthrightness come with the price of admission for Aspie people. We cannot help but tell people what we think the moment we think it. While this can cause great moments of awkwardness for those we speak to, it really can be a great blessing. I never, for instance, leave my children to wonder what I am thinking. I routinely vocalize my thought process, often to their dismay. Still — ours is a relationship always in the making, always changing and always growing.

  I used to hope that I would be able to give my children my best side at all times. I wanted them to look to me as a role model they could rely on, as a mom who showed them which steps to avoid and which way to march. It was never my intention to rely on them as much as I do. Things are often skewed in our family, turned so that the mom ends up relying on the children for their judgement and guidance. I look to them as confidants and best friends. I ask them to help me find my way out of malls, to help me steer my way through a busy crowd, to hold my hand when my anxiety mounts, to tell me if I am saying things no one wants to hear. Amazingly, they never let me down. They take my requests in stride, no differently than if I had asked them to pick up their shoes or do the dishes.

  I think the girls must consider me to be a work in progress. I am happy with that because there is so much to be learned from that perspective. If I can show them it is okay to make mistakes and that perfection is not a key to happiness, I will have given them self-acceptance. If I can teach them tenacity and courage in the face of confusion and doubt, I will have given them the will to achieve. If I can show them individuality and freedom of expression are prizes worth fighting for, I will have given them the chance to find themselves. And if, after growing up with me by their side, they learn the importance of acceptance and compassion, then I will have taught them tolerance. If all these things are to be part of who they are, then I will have been a good role model after all. I will have helped them to find goodness in all people and peace in themselves.

  These days my family and I are on a well worn path that takes us toward mutual respect and sincere support. Sure we argue and fuss and say things we wish we had not, but then, there is nothing unusual about that. Our relationship with Asperger’s Syndrome has not made things between us any more difficult than they might otherwise have been. We allow AS to define us to an extent, but no more than our other genes do. We take it as a given that four of the five of us need glasses and all but one of us has dark hair. We take it as a given that Mom still has struggles with pieces of AS. We know there are many, many things we have yet to discover about each other, and many more things we will learn from each other. Along the way, we are learning not to make excuses about who we are, and we are learning not to wish we were, what we are not. We are learning how to be a tremendously supportive family and sometimes, that is all we need to know.

  7

  Settling In, But Never Down

  On any given day, I can be just like everyone else seems to be. Until I remember I do not have to be. The me that I am has finally made friends with the differences I no longer try to hide. With effervescence in my heart I now find it easy, natural, right to harvest what I will and what I need from the places I visit and the people I meet. And with joy in my soul I am content to hope I have left something worthwhile, so
mething safe and sound, behind me.

  Before she was born, I knew my second twin was going to be a special child. She moved too much, she fussed too much, she never seemed to find calm or quiet like both her sisters had. Sure enough, her birth proved to be difficult. Try as I might, I could not deliver her. Her twin had been born effortlessly, but this baby would not budge. An ultrasound explained why — her birthing position was caught upside down and backwards. The doctors immediately set about the task of moving and manipulating my daughter this way and that, until after nearly twenty minutes, her position was changed to normal and I was able to deliver her without having to have a Cesarean section. I could not wait to see this baby, this child who had fought so hard not to be born. The doctor held her up for me to see, but only for a minuscule moment. «It’s a girl», was all I heard. A limp and lifeless baby was all I saw. Within seconds, the nurses took her away to a room I could not see. Everyone left tried to console my fears and abate my questions by showing me the healthy twin, the pink baby who was wailing and fidgeting and sucking her tiny, perfect fist. As happy and overjoyed as I was to see my little first born twin so healthy and strong, as wonderful as she felt in my arms, I could not swallow my fears. I kept asking what was wrong with the other baby, the one I had not met yet. The nurses assured me she just needed a little jump start, a little oxygen and tender loving care. The longest minutes in my life crawled by me until sometime later, how much later I have no recollection of, she was brought to me. Her coloring was not nearly as bright as her twin’s. Her movement was slow, her voice quiet. Though they were both nearly identical in their birth weights, this twin looked smaller, more frail, than her sister. My special child was beginning her life in a very special way and all I could do was hold her tight and tell her I loved her.

  The doctors never alluded to the notion that she might have suffered any neurological problems, that her development might be delayed, that anything at all would drift from the norm. They never mentioned autistic spectrum disorder. They told us she would be fine. And so it was with much optimism that my husband and I began to raise this child just as we were her twin, just as we had their big sister. Yet there remained a voice in my heart that kept whispering something was different about this child, something… something. Six years later, the whisper became a shout and our world changed forever.

  In comparing the twins, it was never obvious to anyone but me that there was any developmental difference between them. But it was tremendously obvious the two had very distinct personalities. Our oldest twin held our hearts with her quiet and cuddling and sweet shyness. Our youngest twin stole our hearts with her energy and her intense desires and her incorrigible tenacity. Life continued for us at a hectic pace as we struggled to enjoy every waking moment with each of our children, maintain two careers, a household, as much of a routine as we could muster, and as much peace and quiet as we could hope for. For the most part, the twins continued to baffle us as all children baffle their parents, and we tried to take every milestone and every missed beat in stride. It was not until the twins began preschool that I would begin to tell those who would listen, something was different about my youngest daughter.

  At first, I tried to convince myself my daughter had residual hearing loss as a result of the many ear infections she experienced when she was an infant and toddler. Sharon, our local parent educator, agreed with me, even though everyone else told me I was simply raising a daughter who had her own ideas about what to do and when to listen. They told me my daughter was simply stubborn just like her daddy, or hard-headed just like her mommy. These well meaning opinions never caught my reality. Sharon and I continued to suspect something more and finally, on her recommendation, my husband and I took our daughter to a speech and hearing clinic. As we had suspected, she did have a few measurable developmental delays. Her tests showed she had mild hearing loss and auditory discrimination deficiencies which, coupled together, made it difficult for her to separate one incoming sound from another. Those in the know assured me that though this was not the worst news we could have received, it was news we needed to respond to. We were advised to enroll our child in speech articulation classes and told to have her hearing re-evaluated in a year. And so began the adventure that would take us from insecurity and worry to understanding and hope.

  In fast course, I began openly to share my concerns about my daughter’s struggles. I stood alone. People continued to dismiss my concerns as nothing more than paranoia and pessimism. Two years of schooling came and went with only me sensing and seeing the subtle differences, the invisible issues that clouded my daughter’s thinking. I continued to insist that no matter how normal she appeared, no matter how fine her academic abilities, no matter how on-track much of her development was, my daughter had differences that would sooner, and not later, need attention. I innately and logically knew she was holding on to every ounce of strength she had to keep herself from crossing the line that would take her to total chaos. And yet I had no idea how to help her avoid that deep hollow. It never dawned on me to give her what my father had been able to give me — the kinds of intervention therapies that educators suggest, but that came to him naturally and without a therapist’s counsel. To my dismay, I knew I lacked the focus and organization skills of my father, as well as his patience and self-discipline. I knew it would have been impossible for me to do for my little girl, what he had done for me… it would have been impossible for me to help her find her normal without someone else’s help. Trouble was, I had no idea where to find her that assistance. Luckily, a friend did.

  One evening after a very trying day with my daughter, I found myself talking to a great listener, a friend of mine named Sarah. Forever and ever, I rambled on about the problems my daughter was experiencing, the frustrations I was having at not being able to help her, the confusion I felt from not being able to really identify what my child needed. I explained to Sarah my daughter was often easily upset, that she found it very difficult to calm herself down, that she did not seem to be able to control herself in certain areas like a crowded store or a busy school room or a loud cafeteria. I told how she never seemed to understand my directions, how she refused to wear certain clothes or wash her hair or brush her teeth. I complained that she seemed to be so smart, yet so unable to follow logic or reasoning. I expressed concern over the reality that she had few friends, that she was woefully lacking so many social skills. Sarah listened, nodded and never interrupted me. I knew there was really nothing she could do to help my daughter, but it was a great relief simply to express all of my worries to someone who was willing to listen and not dismiss my words as misplaced ramble. When I had said all I could say, Sarah asked me a question I had never been asked. She asked me if I had ever heard of Asperger’s Syndrome.

  In no time at all, I gobbled up every speck of information I could find on AS as if it were the very oxygen I needed to breathe. The storm lifted and the answers that explained who my daughter and I were swirled around us like precious gemstones safely washed in with the tide. At last, I had reasons and explanations so rich and real I could almost touch them. Little by little the search I had begun for my daughter’s well being exposed my own pattern and structure. Slowly, I let bits and pieces of who I was escape my lips. For the first time I had the confidence to discuss openly how difficult it was to figure out what other people were communicating, how sounds seemed to glue themselves to one another so that it was grueling to pick them apart, how sensory cues seemed bound and determined to overwhelm and, most telling of all, how aggressive our tempers could become and how hard it was to restrain impulsive thoughts and actions. Still, I found most people told me I was just under too much stress or that I had fallen prey to the latest psychological trend, almost saying to me that AS was nothing more than the flavor of the month… a silly fad that would fade as quickly as it had appeared. I was told to relax, to find a real problem to complain about, to accept the fact that my daughter and I were just like everyone else.

  I
reacted strongly to these kinds of comments, because they implied that my daughter and I were looking for attention and making excuses for our behaviors and our struggles. In not so many words, I was being made to feel that our struggles were like lint we could pick away and toss off, if only we would make the effort to do so. Why, I wondered, did everyone refuse to accept my words as fact and not fiction? Why was I getting so much opposition? Why were my observations being discounted as so unimportant and unreliable? Why?

  With Sarah’s help, I found the Kansas University Child Development Unit and the answer to my prayers. In a dream come true, I met experts in the field of Asperger’s Syndrome who took my comments and concerns seriously. Arrangements were made for my daughter to take a series of tests that would tell us if she was in fact neurologically atypical or «just like everyone else». What a relief to know we would have answers, at last.

  Time stopped until the two-day evaluation period arrived, though it flew once we began. As I watched my daughter taking her tests, my heart pounded like a race horse running for the finish line. Each of her answers stood like a fine brush dipped in bright colors, eager to paint me a watercolor of who both my daughter and I were. My husband cried as each one of her difficulties became illuminated in her incorrect assumptions and incomplete answers. His heart broke for his daughter, the little one who puzzled him so. Tears streaked my face too, but my heart was not breaking, it was filling up with self-acceptance, it was filling up with possibilities. I knew then, that even though this was not a picture everyone would find beautiful or even acceptable, it was our picture and it was perfect to us. All the insecurities and frustrations I had carried for so many years were beginning to slip away. I had. not imagined a thing. I was different. So was my little girl. Different, challenged even, but not bad or unable or incorrect. I understood my husband’s tears and his fear for our daughter’s future, but I did not relate to them. I knew my innate understanding of what the world of AS is like would help my daughter make her way through life. Together, we would find every answer either of us ever needed.