Pretending to be Normal

by Liane Holliday Willey

  6

  Rocking My Babies

  Oh My God!

  A one act, one scene play hosed on a true story.

  The setting: The hospital ultrasound laboratory.

  The characters: an ultrasound technician, a nurse, an Asperger Mom-to-be and the nervous Father-to-be.

  The plot: Things are not progressing as they should be during what should have been a normal pregnancy and the primary care obstetrician is concerned for the baby’s safety. An ultrasound is ordered and is just beginning…

  The technician: Here we go. This might be a bit cold (pours lubricating jell on the Mom-to-be’s stomach and begins using the ultrasound wand). Alrighty, I can see what I need to now. Here’s one head… (takes a pause and a deep breath) and here’s the other head.

  The Mom-to-be: Two heads? You see two heads? The baby has two heads? (Mom-to-be gasps and with horror in her eyes, looks over at nervous husband who is beginning to slide to the floor).

  The technician: Dad? Dad are you all right? Looks like we lost another one. (Shouting to the outer office) I need help in here, we’ve got another dad on the floor.

  ENTER the nurse who begins to tend to the nervous husband, helping him to sit up, catch his breath, etc.

  The Mom-to-be: Oh my God! I can’t believe my baby has two heads.

  (She begins to shake uncontrollably.)

  The technician: Two heads? Heavens no. Didn’t you know you were having twins?

  The Mom-to-be: Twins? Oh my God!

  THE END

  They say truth is more unbelievable than fiction and if my life is any indication, I would have to say, I agree. It is true that when the short scene above played before me in real life, I truly did think my baby had two heads. While I am not certain this illustrates the literal mindedness that often grabs hold of my AS, I do know it sets a perfect stage for my life as an AS parent. For the past twelve years, I have felt as if I live in a topsy-turvy world of bemused consciousness, somewhere in between what should be and what is. In our home, for example, my children provide me with just about as much role modeling as I provide them. While I am able to set forth the more mature hierarchy of moral and ethical standards, the kids are able to show me how I should act and behave in public. In fact, they often lead me through public arenas knowing that without their help, I am likely to both literally and figuratively lose my way. The kids force me, by their very existence, into a realm of reality that before their arrival was hardly of any matter to me. Because I deeply care that they are well cared for — well educated, happily engaged, and in all other ways, satisfied young beings — I try as hard as I can to control and monitor my behaviors and thoughts consistently. I try to be Every Mom.

  While parenting brings out the most normal in me, it also showcases that about me which is the most unconventional and at times unacceptably challenging. As it is with most things, I find I cannot point to one or two of my challenges as an Asperger mom and shout — «Ahh, I am a failure!» No, it takes more than one fall to trip me up completely. It is in the sum total of my confused state of parenting awareness that gives me reason to quietly whisper — «Oops, I think I have made a mess of things, again!»

  It has been my experience that each stage of my daughters’ lives is not only new to me, but foreign as well. Just when I think I have mastered one set of demands and expectations, another surfaces and throws me off balance. I realize I am not alone in this thought. Every parent I have ever spoken to confesses to a shared set of common complaints, confusions and mistakes. What intrigues me is their identification with the situations and difficulties they discuss. The parents I know seem to have the same kinds of experiences to recount and the same kinds of problems to relate. My worries and blunders come from places they do not seem to know exist. My issues are as foreign to them as their issues are to me. This used to bother me tremendously. It used to make me feel I was incapable of being an acceptable mom. Now that I know more about AS, I am not so hard on myself. I am not so critical. Finally, I can talk to other parents about their thoughts on parenting and discover, if not many, then at least one similarity: we are all able to understand it is possible to adore our children without adoring everything that goes hand in hand with childhood.

  I was glad to hear other parents admit their tummies turned over and their ears hurt when their baby came home from the hospital. It made my problems with baby overload seem a little bit more normal. A little bit, not a lot. When I spoke to new parents it was obvious they were terribly bothered by the thing that challenged their sensory system, but only while it was in the middle of its challenge. They were able to tell stories of extra stinky days or extra loud middle of the nights, but none of their stories were filled with the kinds of strong emotional reactions mine were. They would tell me something like, «There is sure nothing worse than a had diaper» or «It really drove me nuts listening to my child scream all night». And that was that. When I asked them to elaborate, to tell me what it did to their system, they would tell me, «Oh it bothered me all right. Really made me nervous». I would sit and wait to hear more, to hear something that would have been more familiar to my own experiences, something that went way beyond words like bothered and nervous. I never did. It occurred to me that my experiences might be over the top for neurologically typical parents.

  Virtually everything about new parenting had the potential to knock my sensory system out of control. Even the most simple and refined events could prove to be an ambitious opponent fighting to win my calm. When my first child was born, I took a bit of interest in designing the perfect nursery; trouble was, the baby stores and I never agreed on what a nursery should look like. For example, why pastels? Why do colors that look like they are covered in a fine mist of chalk dust throw themselves over so many nursery accessories? I find pastels difficult to look at. I tried them once. I painted my entire home in light colors. Two weeks later, I repainted everything in clear, deep tones. Each time I walk into a room filled with washed-out hues, my mouth fills with saliva and my head hurts. They make me feel icky, queasy, uneven. I can take them in small doses, in crayon boxes or mixed in a fabric that is based in a darker color, but I do not like to feel immersed in them. They drown me.

  When I did manage to discover a section of true colored furnishings and bedding, my troubles were not ended. An array of different, but no less irksome, problems stood in my way. I brought my fixation on symmetry with me wherever I went, always relying on it to set the reliable standard. Baby things tended to be rotund and round, no doubt because sharp edges can hurt little hands and bodies. My logic understood and appreciated the reasoning behind the designs, but my sensibilities were unaffected by the vision behind the forms. My eyes wanted to see solid forms crafted from squares and triangles. They did not want to look upon a string of black and white abstract patterns, farm animals that looked like they had been flattened by a tractor, or clowns wearing pastel costumes. I could not imagine that my baby would want to lie beneath the belly of any of that either. The things were frightening, not comforting; distorted, not cute.

  It was just as bothersome trying to find nice bedding, curtains and wall hangings. Once again, I had to face the pastels and endure the convoluted patterns, but now, I had to deal with their textures, as well. All sorts of sensations apprehend me when I touch certain surfaces. I do not like to touch raw wood, though I like to smell it; but then again, I do not like wood that is finished too glassy. I like to touch wood furniture and floors when it feels like the very last sanding was left beneath the varnish. I am pleased with furnishings that could withstand a strong wind, not pieces that look like they will break when I sit in them. I like very finely woven cottons, very bumpy chenille and rough velvet. My fingers withdraw when I touch satin, polyester, nylon, unbleached linen, and hairy yarn. I will not lie under blankets advertised to be as light as air, nor under blankets too heavy to kick off. Mid-weight fabrics with a subtle nub, bring me comfort. Anything else, brings me goose bumps. I was not certain if my
babies would share my idiosyncracies with such matters, but I knew that if I was going to handle the materials they touched, I would have to surround them with necessities that appealed to me. When all was said and done, I did manage to decorate my daughters’ rooms in a fashion that was warm and welcoming. I never was able to find any bedding, though, and turned to my mother to make draperies and covers from white cotton. It was a relief to know I could go to the nursery with focused energy. It was not a relief to know the rest of my senses would not be so easy to tame.

  Motion is not my friend. My stomach tips and spills when I look at a merry-go-round, or drive my car over a hill or around a corner too quickly. When my first baby was born, I soon learned my troubles with vestibular motion went beyond amusement parks and car rides. I could not rock my girls. I could sway, though, and this I did even in my rocking chair. Leaning forward toward the edge or far back into the chair, I would move my body left and right while I patted the babies to quiet their tears. When that made me sick, I would stand and sway, only a few inches in either direction. If that proved to be too much, I walked the floors, bouncing my daughters up and down as I went. My attempts routinely fell short of perfect for my young ones who preferred the wild ride their father could provide them. Too bad that excuse did little to convince him he should take all the night shift duties from me.

  Each time I made any decision to do anything with my babies, I faced the possibility of sensory overload, especially if any smells were involved. Nothing, not colic that woke the neighbors, midnight trips to the store for diapers or all night feedings, could compete with baby spittle, soured formula, cradle cap crust and nasty diapers. The best parent has to hate those things, but I suspect I may have been more affected than most. I would pale, throw up and have to lay down when the odors were too rank.

  Surprisingly, I was pretty tolerant of my babies’ noises. I did not like the crying and toy clanging, but I could tolerate it. I wonder if this was because I was more focused on the reasons for the cries than I was on the sound of the cry itself. My father always tells me to try and find something to take my mind off my own thoughts and anxieties. He knows me well. The thought that my children were crying because they were seriously ill worked wonders to shove other thoughts, and all other concerns, quickly out of my mind.

  There were times when I ended my day worried I had let my children down because I walked out of their room when it was filled with noxious odors or called my husband to rock them for me, but there were never mornings when I did not wake up and tell myself I was doing my best to give my babies the best parts of me. I realized early on, way before I heard the words Asperger’s Syndrome, that I reacted to the world in unusual ways, but I never told myself this would mean I could not become a loving and good mother. I was not put together like other moms, but I was still my daughters’ mom and I was determined they would have the kind of care they needed from me. I soon learned to put the parenting books away when I came across passages that seemed to suggest there was only one mom, only one way to love a child.

  As the girls grew older, new horizons shed a bright light on virtually each of my Asperger traits. And while I could find ways to deal with, or at least mask, my sensory integration dysfunction problems, I could not shirk away from those traits that would follow me no matter what. If we were at home I could do quite a lot to contain my most obvious AS traits. I could control the environment, taking away those things that annoyed me or I could choose to ignore those problems I had not learned to control. At the very least, I could rely on my husband to bail me out if something was happening that would not go away or be ignored. But my husband was not always with me. If I was out on my own when I got too distracted by too many images and situations, I would run the risk of losing my edge over the AS. My language would become too pedantic, my facial expressions too exaggerated, my thinking too rigid, my temper too rude and my pragmatics too problematic.

  The situations that caused me the most stress and so the greatest risks, involved my children. I think of my family as a closed entity, one that can invite people to visit on our own terms, when and if we feel up to it. I am easily upset when people do not seem to understand I have a protective shield around my children and my husband. I never interfere with other people’s family dynamics, at least not to my knowledge, and I think it only right that I expect others to respect our privacy My expectations are rarely met and this bothers me. Before we had children, my husband and I were in complete control of our environment. If company came to visit when we were uninterested in entertaining, we would pretend not to be home. If we walked into a restaurant and found it to be too crowded, we would leave. If too many people wanted too much of our time, we quit answering our calls. If the outside world became too invasive, we turned it out and off. We never tried to be rude. We were trying to be honest.

  When we had children our privacy vanished. Our closed doors turned to open windows. Our quiet walks down the block became parades all the children in the neighborhood followed. Our phone rang until we picked it up. People knocked on our door and peered in our windows, waving us over to come greet them. I smiled a lot then. I did not know what else to do. I gabbed and laughed and poured lemonade and made cookies and planned elaborate parties for my children and their friends. I was learning the tricks of the trade by reading the neighborhood like a «how to» book. The only problem was, this book was incomplete. It did much to tell me what to do, but little to tell me what not to do. I could not figure out how not to have children over when the noise was too much for me; how not to speak to neighbors when I had nothing to say; how not to act cheery when I felt closed in on. My emotions were scrambling and my insights were fogged. I knew what I needed to be content but I did not know how to meet those needs without stepping on the needs of my family. I could go back to locking the doors but my children wanted their friends to come play. I could ignore people but this would embarrass my family. I could refuse friendships but this would leave my family lonely. I did not know how to make graceful exits or give subtle hints. I did not know how to make transitions. I did not know how to separate the girls’ needs from my own needs without tearing us apart.

  Children require a team of people to keep them healthy, educated, happy and socially accepted. This reality did not put me at ease, but it was clear to me and therefore something I told myself I needed to learn to live with. Some members of the team were easier to understand than others. Visits to the doctor’s office, for example, were no great mystery to me. The girls’ physical needs could be charted, measured, analyzed and fixed. Doctors did not chit chat, they got right to business then moved on to the next person in need. Other fundamentals were not as easy to address or tend to. School issues top the list of those which confound me. The most simple-sounding duties blew me away. For example, what exactly did it mean to plan a child’s class party? With no precise guidelines or definition of terms in tow, I had no answer but plenty of questions. Was any kind of entertainment acceptable or did I need to hire a dog and pony act? Could I provide any sort of snack or was I expected to bring in fully nutritious main course meals? Was I suppose to poll the parents and ask them for their thoughts? Was I supposed to invite them to attend? If I planned a craft, were there rules about which materials the kids could use? I did not know where to begin or worse, how to end. The experience was terrifying to me. I was filled with the fear that others would discover my awkward individuality and so I found it very, very difficult to ask others what they did for parties. Everyone else I observed seemed to naturally know what to do, even the new moms. I knew that if I confessed my ignorance or articulated my thoughts, I would run the risk of embarrassing my children. After all, who wanted to be the daughter of the know-nothing mom?

  I remember, in particular, one Halloween party when my oldest daughter was in elementary school. My husband and I showed up to watch the party, as did many other parents. We were the first to arrive and sat comfortably in the back of the room, happy to observe. I was content
and calm in the classroom; I always am. Young children and the elderly are easy for me to be around. They are gracious toward my differences and accepting, despite my pitfalls. Tom and I talked to the children as they came our way and smiled at the teacher to show we were enjoying ourselves. It was a great party, until the other parents arrived. When other moms and dads came in, it became crystal clear to me that I had missed another unspoken rule. They were all in costumes, we were not. How were they privy to knowledge we did not have? I imagined the worst. Did they have a private club whose members include only those who can recite a secret cookie recipe? Were our names going to be tossed around every Halloween as the couple who came in street clothes? I obsessed on this worry for days and days on end, until my husband finally convinced me I had made no grand faux pas. But I know I will never forget the feeling that overwhelmed me when my daughter ran to us and asked us why we were not wearing a costume like the other mommies and daddies.

  Life goes on for we parents with Asperger’s Syndrome traits no matter how many times we ask ourselves what just happened or what could we have done differently. There is no predictability parents can count on, no objectivity that can overshadow the subjectivity innate to children, and no amount of wishing and hoping that can forestall the inevitable… we will make mistakes. The challenge I set for myself is simple. I tell myself I will never know what to do or how to act unless I become a consciously savvy consumer of the parenting market. I have slowly found good friends whom I can ask for advice and guidance, friends who will take me under their wing and never laugh at me or misguide me.