Pretending to be Normal Read online

  I had finally reached the end of my race to be normal. And that was exactly what I needed. A finish — an end to the pretending that had kept me running in circles for most of my life. With a heightened sense of assurance, I discovered both my daughter and I needed to answer our own call as best as we could, exactly as we should. I accepted my need to design my own model, one that was built on my strengths and protected, as much as possible, from my weaknesses. It was perfectly okay to be a unique wife, friend and daughter. I could be a quirky mom. All I needed to do was find my way to make things work for the best.

  These days, I try to remind myself that though each of my children are very different little beings, I am me and only so capable of flexibility. Within that framework, I then try to give each child what she needs, knowing those needs will often be more than I alone can provide for. In other words, I have learned to accept the fact that I will make mistakes at nearly every turn, but that those mistakes can be softened if I am honest about who I am to my girls. In many ways, it is easier for me to parent my AS child. I know how to relate to her, I know how to show her where to go. I try to teach her to do the kinds of things that help me navigate my way through the regular world. I try to get her to wear earplugs in public or sunglasses in bright light. I try to teach her to very literally bite her lip when she feels she might be about to say something the least bit rude or offensive. Not surprisingly, I have found I am able to rely on a more sophisticated set of learned behaviors than she is able to comprehend at this point in her young seven-year-old life. For instance, I have no difficulty plugging my ears in public or wearing sunglasses indoors and in the evening. I no longer feel odd when I realize my language is yielding to pedantic speech. I openly enjoy talking to myself and never hesitate to do so, even though I now know this is not a particularly acceptable behavior. I will often assert my annoyance in public places, ranting about everything from the loud lights to the sharp sounds to the obtrusive smells and obnoxious behaviors of others. And I have long since given up trying to memorize or understand anything that, by its nature, cannot have a concrete picture attached to its meaning. I no longer apologize when I miss a joke or misplace someone else’s convoluted logic. I have gotten used to me. But I am in middle age. What I need to learn to hope for is the thought that I can help my daughter develop the individualized coping skills she will need to find her own comfort zone.

  I know now that her answers will be different from mine in large part because she is far more self-aware than I was at her age. I ran about rather carefree in my own world. But then, I had no siblings to compare myself to and no real framework to present myself in front of. I had free rein in how I acted, dressed and behaved. It took me years to care that I was different and only then did I feel the way my young daughter feels now. She is often ashamed and bewildered by the wonder that is her. She is embarrassed the moment she senses she looks or acts differently. Yet though she has the ability oftentimes to sense her differences by comparing herself to others, she is typically unable to suppress her actions or her words and certainly never her thoughts. I walk a fine line when I begin to try to teach my daughter how to act in public, how to understand abstract language, how not to be so outspoken and brash. In one respect, it is very difficult for me because I want her to feel the freedom I did, but without paying the price I did before I came to figure me all out. I never want her to feel ashamed of the qualities that give her the gift of complete honesty. I want her to hold her head up high with an authority that shouts to all who care to listen, «I don’t have to be you!! I don’t have to smile when you’ve done something inane. I don’t have to pretend to go along with the flow if it is drowning me. I can choose to turn around and leave this situation the moment it upsets me, and you should respect my decision to do so!» But then, there is a part of me who knows if she is ever going to find peace with herself completely and if she is ever going to be given the opportunity to succeed in a society as reluctant to accept any deviation from the norm as ours is, I must teach her all I know… and then some.

  Life with my Asperger’s daughter, challenging as it might be, is something very familiar to me. At any rate, I feel I am parenting the daughter who shares my insights as best I can. The connection we share has bound us together hand in hand. I know far ahead of time if she is going to find a particular environment too overstimulating, a person’s style and demeanor annoying, or a comment confusing. As soon as I sense my daughter’s thoughts, I look to her and am never surprised to see her looking back at me with a You see what I see, don’t you mom? expression in her eyes. I feel badly sometimes that she only seems to find that connection with me and not her father or her sisters. They try very hard to understand her uniqueness, but I fully believe there is not much they can do to really «get» her. To do so, would be impossible for three such normally-placed people. My husband, in particular, struggles to stay one step ahead of her, for that is usually the only way to circumvent her from making a social or problem-solving blunder and more important, a sensory fall. For the most part, we can help her through her misunderstandings of context and her social problems, provided we are there to witness her behavior. We can warn her ahead of time not to say anything about anyone in a voice they can hear. We can prepare her for the place we are taking her to, letting her rehearse in her mind what she will be seeing, touching, smelling, hearing, tasting and doing. So, too, can we encourage her to come to her sisters, one of us, or one of the safe adults we have helped her to identify, should she find herself in a state of confusion or frustration that is too big for her to handle alone. We can ask her to wear her ear plugs or to close her eyes if she is overwhelmed by the patterns she will no doubt find everywhere her eyes wander. We can hand her a flexible ball to squeeze in case she needs to release some nervous energy. We can even tell her some safe topics to talk about and teach her some pat phrases and a few jokes to rely on for conversation. As important as all these skills are, none are as important as the one we cannot really help her with — the skill that will enable her to find her own style and self-identity. She will have to reach that goal on her own. In time, I believe she will.

  Little by little, I notice my daughter is trying to find new ways of coping. And what a joy that is to behold. Each time she tries something new, a new technique as it were, to calm herself or to make a friend, it is as if she has won a prize we can all be proud of. Just the other day, for example, while we were shopping at a very sensory intensive store, I smiled with pride as she asked me to put her in a shopping cart and cover her up with everything we were buying. I did so, interested in the outcome, but nonplussed by the request itself. Even her father and sisters, following my lead to allow her this flexibility, continued their shopping without missing a beat. All went well and indeed, she was able to keep her senses from totally dysfunctioning, until we met the check-out employee. The instant she saw my daughter under the fully filled cart, she said in a very aggressive tone, «She needs to get out of there. NOW!» My daughter quickly separated herself from the company she had been keeping with the bag of apples, the cartons of milk, the clothing items, the cereal boxes, and dog food and who knows what else. Knowing without even looking at her what was racing through her mind, I turned to the employee ready to speak my thoughts which were quickly coming to a frenzied pitch of anger. Luckily for her, my husband and his quiet demeanor found words before I did, and just as I opened my mouth to scream a stream of indignities at the woman, he told the girls and I to leave the store. His eyes and his hand on my shoulder and his quiet, almost whispered tone, told me he would take care of the situation without causing a scene and further embarrassment for our daughter. Had he not been with us, I am certain I would have let loose one of my biggest Asperger obstacles — my raging temper. We left the store, but I knew some damage had already been done. My AS daughter was devastated. She looked at me with tears in her eyes and hugged me tightly. Her sisters looked on and stood by her as if they too, would join me in any battle to protect her. I
stood with my girls knowing we were a team, and for that I was immeasurably proud and glad. But, as I looked down at my frightened and confused child, I knew that without the proper reassurance she would likely never again try to help herself on her terms. I bent down until I was face to face with her, and holding her shoulders as tightly as I could — giving her both deep pressure relief and my total support — I said, «I am proud of you for finding a way to keep yourself from overloading. You did nothing wrong. You can never be ashamed of trying to help yourself from going overboard. You can cover yourself up with stuff anytime you want».

  As I asked her if she understood me, it became clear that not only had she taken my words to heart, but that she was also prepared to hand the employee a piece of yet another Asperger’s quality she shares with me — her very strong temper. Given a choice, I would rather my daughter stand up and proclaim herself in charge, than I would have her find a corner to disappear in, even if it means having to see her angry — short of violence, of course. Her anger, at least, proves she has not given up on herself and that is no small task. Too often those with AS get lost in a world of discouragement and damaged self-esteem, and in that world there are few avenues for happiness. I try, at every opportunity I am given, to show both my daughter and myself that so long as we are soundly willing, we can find a way to create good things for ourselves — no matter what.

  Toward that goal, I routinely tell my daughter she must tell herself it is okay to assess and meet her own needs. I want her to know if she feels the need to lay suspended upside down, or stomp her feet when she walks to feel connected, or squeeze balloons filled with flour, or run to me with whispers of how weird someone appears to her, or seek the company of her dog rather than her friends, of punch a punching bag, even if she feels she needs to shout to keep from disappearing into the abyss so many with autistic spectrum disorders find, then my husband and I let her do so. Our only request as parents who care deeply for her, is that she do nothing to hurt herself or others. Anything within the boundaries of safety, both mental and physical, are boundaries we let her explore, knowing that each is bound to be unique and particularly adaptable to any number of situations.

  I know firsthand that my daughter’s struggles will not be few, but frequent. But I am very optimistic that she will find her way, just as I have. Beyond the basics, beyond the day-to-day routines, I know the real me, the one that truly matters, was nurtured and shaped by the lessons my mother and father taught me. The heart and soul of their parenting was simply that I take pride in my individuality, idiosyncracies and all. I hold that counsel to be sacred, for what flows from its simple premise is a wellspring of self-confidence, self-assurance, and a dogged commitment to do one’s best. These realistic ideals are important to every child’s well-being and good health, but perhaps even more so to the child who is growing up while learning to live in a home touched by AS. They are the very lessons I must teach my own children, if I expect them to survive and thrive in an environment shared with me. Why? Because Asperger’s Syndrome can mystify those who know nothing about it, particularly in my case when its manifestation has become so subtle. My children cannot point to an obvious physical disability and silently ask others to give their mother a break. Consequently, they cannot expect others to understand me as they do. My girls must learn how to deflect public opinion of their mom, just as they have to look harder to find reasons to be proud of me. I think they have. Within the walls of positive self-esteem, individual fulfillment and goal-setting, I think my girls have learned to accept the public me without too much pain or embarrassment. Sure, they remind me not to talk to myself in public, not to use a loud voice around others, not to bring up the subject of my dogs to every living soul, not to ramble on in my conversations, not to cover my ears at the park and yell «Who in their right mind can stand all this noise?» and not to cover my nose and scream «My God that stinks!» But that is just fine with me, for all along the way, they never, ever forget to tell me that despite all of my quirks and batty nuances, they love me no matter what.

  To be certain my family’s love and graciousness toward me never wanes, I tell them as often as I remember that it is perfectly all right and acceptable for them to discover moments when they are unhappy with my behavior, embarrassed by my reactions or even horrified by my conversations. Thankfully, I believe they listen to me when I tell them this, for the last thing I want to do is give them cause to feel badly about themselves should they ever entertain the wish that their mom was more like other moms. I explain to them that every child would like the ability to re-design their parents and I lead them to the understanding that it is perfectly normal to want the fairytale mom. Who wouldn’t?

  But, along the way, I also try to instill in them a higher moral code, one that is far more vulnerable to decency and goodness. I want my girls to find reasons to enjoy all the people in their lives, even if it means they have to tap into every creative well in their soul, to do so. I want them to truly, way down deep in their hearts, know that all people, and not just their mom, are worthy, viable and exceptional beings who have much to give and even more to share. So long as my family knows who I am, I am rather content. As to others, well, their opinions tend to matter less and less to me. Nonetheless, I do try to help those who need to know me well, see that I simply move to my own music. How I do this, depends on who the person is and on how receptive they are to accepting and acknowledging my differences. If, for example, I am faced with someone who continues to dismiss AS as a passing fad or someone who refuses to believe me when I explain what I really think and feel under certain situations, I separate myself from them as best I can. I have taught myself to believe that if they were my friend, they would not dismiss nor disbelieve me; they would want to know all about me so they could meet me half way. On the other hand, when I sense AS is important to someone, I grow as animated and excited as a returning traveler sharing her fondest memories of a trip well enjoyed. I open my heart and my mind and let everything I know about autistic spectrum disorders fill the silence with both the good and the bad, the challenging and the exciting. I rely on honesty and personal experience and the research of others to guide my talk, never stopping to ask if I am making myself clear, only trying to reveal doors of knowledge that whomever I am speaking to can open when they are ready.

  As I look at where I was thirty, twenty, ten, even five years ago, I note how much I have changed, how much I have progressed toward the standard definition of normal. There are times when I approach this fact with a certain amount of excitement and optimism, for I think my history illustrates the myriad of possibilities that can come when the efforts of loyal support systems and friends are combined with a series of proper and early intervention techniques. But I also know that in essence, my AS traits never had a chance to take over my bid for a more mainstreamed life. My IQ is too high, my creativity too productive, my family and friends too supportive for any other option to have emerged.

  In some ways I cannot help but be happy I have found a mostly comfortable place to rest. A point in life that sits balanced between neurologically typical and Asperger’s Syndrome. In other ways, I meet who I am with a certain amount of sadness, for I often wonder what parts of me I had to leave behind before I came to this place in my life. Would I have been a better writer if I had allowed my skewed take on the world to find its way to paper? Was there a wonderfully quirky and surreal book hidden beneath my idiosyncracies that will now never be found because I can bridle so many of my old habits and thinking patterns? If I had not been taught and encouraged to be as social as I now am, would I have found a different but somehow more satisfying kind of individualized lifestyle? Would I have avoided my irritable bowel syndrome and my panic attacks, if I had not tried so hard to pretend to be normal?

  Of course, I will never know. But still I do not want to lose sight of these reflections, because they help me to remember that everyone has the right to figure out their own normal, even as they have the right to k
now, see and touch how things might be if they work hard to control their differences, if they work hard to modulate, if they work hard to follow the commonplace sense of being. And when all the figuring out and reflecting is finished, the point will remain, that everyone should be afforded a great deal of freedom and respect as they choose who and what we will become.

  It can be cozy and warm and right living within the walls of autistic spectrum disorders, particularly those that are as pliable as the AS walls, for there is nothing inherently wrong or undesirable about the need to live alone, to embrace eccentricities and quirks and even blunt speech. There is nothing terrible in having a disdain for certain senses and a craving for others. And there is not one reason why the term normal should not be an exceptionally relative idiom. I look at those who wear their AS more obviously than I do with a bit of envy. I admire them their ability to share their brilliant differences. I applaud them for their self-acceptance. I thank them for their realism. And I hope that as we continue to explore the nature of autistic spectrum disorders and the lives that are touched by it, we are able to find much richness and goodness in our common bond. Perhaps then, society will not come to the consensus that those who keep their AS traits intact, either as a conscious choice or because they were never quite able to combine their abilities and exceptionalities any differently, are people who are less than acceptable, less than honorable.