I was 8 years old when my sister was born. The length of my mother's pregnancy she would repeat how she was carrying her differently than she had carried me and that she was certain that it was going to be a boy. Different friends and family members would remark on the shape and location of my mother's belly, declaring the same. At 8 years old, when someone tells you something with the certainty that an adult can do, you tend to believe it. I geared myself up for having a brother. I drew pictures dedicated to my future brother, "Alex." I was as excited as an impending big sister can be.





I distinctly remember sitting in the corridor of the hospital with my grandfather, the sound of his keys jingling in his fidgeting hand, when my dad approached our bench with a huge smile on his face.





"Congratulations, Zara!" he beamed. "You have a brand new baby sister!"





My face was blank for a few beats before I replied. "But... where's my brother?"





As life went on, the surprises didn't stop there. Adjusting to having a new baby in the home when you've been the only child isn't easy for anyone. I went from being the center of attention, doted on by both of my parents to being that weird little kid that people barely acknowledged before cooing over the infant in the stroller. My dad began to work more, one of those side effects rarely spoken of about men who become fathers to multiple children. "Provider Anxiety Syndrome," I like to call it.





I did not deal with the situation well. When my sister would cry in the car, I would bop my hand over her wailing mouth, delighting in the Indian battle cry that it would produce. Listening to my mom and dad yell at me about my antics would just propel me to want to do more. I would hide her favorite toys and claim ignorance to their disappearance. Her beloved "blankie" would often find itself crammed into the back corner of the linen closet, unable to heed her cries. I started spending more time in my room, reading books, writing stories of heroines in peril, ignored and abused by uncaring family.





I don't really recall the exact time when my sister started to change. She was a smiling baby, chubby cheeks wrinkling up whenever she'd greet playmates with a gummy smile. My mother recalls thinking that she was just a "different" child than I was, but the suspicions of anything deeper than that were not investigated. Around home, she was as normal as any other weird member of our family. Her large motor skills were slightly behind for her age, but not to such a significant degree that anyone caught on or paid it any notice.





My mom got pregnant again around the time that she turned 2. After losing so much of the attention that I had previously grown to depend upon, it was like hearing a dull thud in my ears the evening that I was delivered the news. My sister gurgled away in her high chair, throwing food on the floor as my mom served me a plate of Kraft Macaroni and Cheese. I knew something was up when my health conscious mother was allowing me to eat processed food. I slid the tube shaped noodles onto the tines of my fork and grunted a response as a way of acknowledging that I'd heard her.





By the time that my second baby sister was born, I'd grown as used to not being the apple of my parents' eye as a kid could get. I was 11 by then, firmly three quarters of the way through puberty, my worries now firmly centered on myself and only myself, as is normal for preteens. It was easier dealing with my baby sister. She was bubbly and thankfully "normal." As a form of retaliation towards my first sister, I spent more time doting on my baby sister. I was a kid at the time, not quite aware of what my actions meant. Looking back, I understand them now. At the time it was just a subtle way of continuing my mean streak toward the little person that my young mind perceived as having ruined my easy ride.





When my sister entered kindergarten, my mom started to get the calls. The teacher began to report that she was "different" than the other kids. My mother didn't understand why they were making such a big deal over what she thought were just personality tics. At home my sister was as she had always been. It wasn't until my mom observed her in the classroom that she began to wonder if the teachers were right.





First grade was hellish for my sister. Out of all of the teachers that she's had over the years, it is the teacher from first grade that she recalls as being the worst. Forcing her to do things as the other kids in the class were supposed to do them, with very little understanding or recognition of the fact that she might be different, the teacher made my sister feel ostracized from the rest of her classmates. Around this time was when my sister first became a target for the school bully as well. Stalked around the playground and taunted with comments about her weight, the tormenting went on for a couple of years and has stuck with her ever since.





When second grade came around, my sister was blessed with a more understanding teacher. The woman had previously been a Special Education teacher and after spending time with my sister was able to recognize some of the habits that are associated with autism. My sister remembers her fondly as being soft-spoken, kind and understanding. She helped to walk my mother through an uncertain time, getting the school psychologist to sit down with my family and discuss a possible diagnosis.





It was at that time determined that my sister was either schizophrenic or autistic. Her large motor skills were still behind and she was enrolled in physical therapy to help her catch up. The two sides of her body were not in sync and when she would jump her feet would lift off the floor and return to it at two different times. She remained in therapy for a couple of years until her body had progressed to meet the level of other children her age.





I was in high school by the time that this was happening, more concerned with boyfriends and school functions than what my weird little sister was going through. I despised needing to wait on my mom to take her to appointments when I wanted a ride to the mall to hang out with my friends. I quickly picked up on dating guys that were older than me, the ones who had licenses and drove cars. While my mother didn't admit it at the time, I feel she was more permissive of this because it lightened her load and she was able to avoid my bratty outbursts as long as there was someone else to chauffer me around.





Being a teenager is the time of being self-absorbed. I never really understood what was going on at the time with my sister, nor did I fully appreciate what my parents were going through. As a parent now myself, I have a great deal of respect for my mother for holding her shit together with me as well as she did. As I asked her questions recently about what that time in her life was like, it became apparent to me the sacrifices that we make as mothers and fathers. The whispered voices that quiet when you walk into a room. The social interaction that you lose.





My mother is an eighth grade English teacher. By the time that my sister was in school, enrolled in the same district that my mother taught in, her name and reputation as a teacher was established. Looking back on the time when my sister was first being diagnosed, she recalls the invasive questions that the school asked. The feeling of being put through the third degree, that the doctors and the teachers were looking for something, anything to pin the autism on. With a hint of anger she recalls the feeling that they were insinuating that if only she was a better parent, a better teacher, a better person, this wouldn't be happening with her child.





Those feelings carried over into her professional life. She describes that there became this shadow of doubt cast over her in the school system. Talking done behind closed doors and behind her back that she must not be as good of a teacher if she couldn't control her own child. She speaks of feeling like people purposefully distanced themselves from her, like people tend to act around cancer patients. "It's as if people feel that it's 'catching,'" she said to me. "Or that they'll have to deal with a person being emotional. That they might have to see you cry or become upset and just don't want to have to deal with that." There is a slight hint of bitterness in her voice as she tells me this, explaining how she feels that she lost intimacy with former friendships during this time.





Because of the large gap in our ages, I had graduated from high school before my sister had even exited grade school. After spending a year in college, I went into the workplace on a more full time basis, scheduling the Thursdays that my sisters had half-days at school to be off so that I could help my mother in picking them up. At that time it was still easier to relate to my baby sister. Not realizing at the time that I was still heavily favoring her, I planned outings with her, taking her to lunch, the movies, the mall. It was easier to not put much thought into my sister, my weird sister. I guess I still felt like she received extra attention from my parents, so why bother giving her more from me.





Around the time that she was in the third grade, she'd been prescribed medication to help keep her symptoms on track. One of the biggest ones was the most common in autism patients. She would fixate on a certain thing, becoming overwhelmingly preoccupied with it. Throughout grade school that thing was dinosaurs. Everything she touched throughout her day had to be dinosaur associated. Dinosaur plates and cups, dinosaur bed sheets and blankets, dinosaur toothbrushes, toys and books. As long as she stayed on her routine, took her meds and no one screwed with her things, she could function fine.





When she entered junior high school, my sister's doctor suggested slowly taking her off her medication. (She'd taken Haldol and Cylert among others.) Seeing that she was doing fine without it, she was taken off drugs at that time completely. She hasn't been on any prescriptions since then.





It was also around that time that she started to feel like she was being repressed in school. The special education programs, while designed well to handle children with developmental disabilities and the repetitive habits and strange natures, isn't geared toward a great deal of intellectual advancement. My sister wanted to branch out more into regular classes, especially in high school where she began to excel at art. This was her area of expertise, where her disability was more of a benefit than a restriction. However, because she was never fully prepared in the special education courses to handle anything on a higher learning level, many of the other regular classes that she attempted were difficult for her, even despite her strong desire to want to succeed in them.





It was toward the end of her junior high school career that the doctors finally properly diagnosed her disability as well. It was determined that she had Asperger's Disorder, a high-functioning version of autism contained under the Autism Spectrum Disorder (sometimes referred to as Pervasive Developmental Disorder or PDD). With a better understanding of what she was dealing with, my mother was able to do more research and start to fully comprehend what was "wrong" with her child.





Some of the benchmarks of Asperger's include severe impairment of social interaction skills. People with the disorder have impaired non-verbal behaviors such as being unable to make eye contact when talking to another person, having a lack of proper facial expressions (their faces look impassive or on the opposite end of the spectrum they might always smile, even when angry or sad), strange body movements or positions of their limbs and using wild or unusual gestures to communicate.





We learned that her obsession with dinosaurs was also completely the norm for an Asperger's patient. Other individuals with Asperger's would display similar behaviors, including sharing her inflexibility when it came to changing routine. Repetitive motions like finger tapping, a rocking of the body, or in my sister's case, slowing pulling out hairs on her forearms were also considered normal for her condition.





The upside to finding out that it was Asperger's and not the general form of autism was that she wasn't going to suffer from language impediments, delays in cognitive reasoning or social adaption skills. She was going to have a better chance of learning habits of other NTs ("Neuro-typicals," or what Asperger's patients tend to refer to us "normal" people as) out in the world.





In simpler terms, all hope was not lost.





I was 21 when I first moved out of my parent's home. Living on my own was the shocking experience that it is for most young people. Figuring out how to balance expenses, learning to be responsible for laundry, cooking and cleaning, all of those luxuries that we take for granted when our moms and dads are assisting us with. It was in that time of learning to adapt and survive on my own that I began to miss my family, weird little sister and all. In those years I attempted to understand more, and I tried reaching out and doing that bonding that I'd previously avoided.





One summer I signed my sister and I up to be volunteers at the local Humane Society. It involved picking her up from my parent's home one afternoon a week, driving into the neighboring city of Ojai, located a 20 minute leisurely drive away. In that time, she blossomed in front of me. With each progressive week she opened up more, eventually getting to a point where she dominated our conversations. I listened in amazement, surprised at how she'd grown, wondering how long I'd missed out on being a more interactive part of her life. If there's ever been a moment in my life where I came close to feeling regret, it was during those drives.





That feeling soon turned to a feeling of gratitude. While I worried about what I'd missed, one evening my mom called me and gave me the most beautiful bit of information that I think I've ever received. She told me of how my sister jabbered excitedly one evening at dinner after one of our afternoons. "I like Zara so much better now that she doesn't live with us," she told my mom. There has never been a more backhanded compliment that has meant as much to me as that one.





There was a desire to beat myself up over all the times I pushed her out of my room and out of my life when I was an ornery teenager. A feeling that I needed to be sorry that I couldn't have been more understanding for my age. But without all of those moments, all of those completely understandable developmental stages in my adolescent development, I would have missed the bonding that we did in the later years. Without all of the bullshit, there wouldn't have been a recognition of the beauty that our relationship eventually grew into.





As an adult my sister has become an advocate for understanding. With the proliferation of internet users these days, information at the fingertips of even the most uneducated, there are a lot of ideas floating around to be absorbed by the easily lead. Sometimes it's not just that people are stupid, ignorant or easily lead as I might refer to them as being. Sometimes they're just frustrated parents, much like my mother was back in the days that my sister was initially being diagnosed. When everyone is trying to pin the blame on you, I can see how they would go looking for someone else to pass that along to.





My mother's hairdresser has a 14 year old son who suffers from the more classic variation of autism. She is among the group of parents who believe that vaccinations are to blame for her son's disability. Seeing a child that was on a normal developmental track up until the age of 2 when he was given the standard battery of shots that are administered by pediatricians, she genuinely believes that he was negatively affected by them. While I can empathize with her frustration, I also know that autism can still be undiagnosed up until the age of three, and in my sister's case even later.





It all comes around to that lack of understanding that we have for the parents of children with disabilities. The age-old argument of "until you've been there, you don't really know what I'm going through." That is true enough, but with 1 in 150 children now being diagnosed with some form of autism, the time is going to need to come when we can stop judging this disability as being something preventable. This is not Fetal Alcohol Syndrome, a disability put onto children by a mother's excessive alcoholism. This is a bio-neurological disorder which knows not race, nor religion, nor region, nor socio-economic status.





In a phrase: IT IS NO ONE'S "FAULT."





As I set out to tell the tale of my sister, I did the internet route. I googled the term "Asperger's Autism." I found several websites devoted to "curing" and/or "ending" autism. They are visible, they are funded, they are supported. There are organizations like Athletes Against Autism, founded by three NHL players and fathers of autistic children. There is information on how to "prevent" symptoms from occurring and statements meant to foster hope, like explaining that Asperger's has a "more positive outcome" than standard high-functioning autism.





I even discovered that President Bush recently signed a bill entitled the "Combating Autism Act of 2006 (s.843)" in which almost $1 billion will be dedicated over the next five years to research, screening and early detection of autism and autism spectrum disorders like Asperger's. The bill is supported by Republicans and Democrats alike, from Congressmen to Senators.





I found much of the information overwhelmingly negative, for all of the positive spin that they tried to put on it. Using such terms as "curing," "combating," and even "against," made me cringe. Have we really become a nation where rather than learn to adapt to changes within our environment we have to attack them and eradicate them in order to feel safe at night? Are people like my sister really all that scary of a concept for the world at large to try and deal with?





I took a walk with my sister this afternoon, listening to her drone on about video games (one of her more recent obsessions) and thought to myself how much I like her as a person. I love my sister with all of my heart because she is my sister, but it is a major distinction to be able to say that I like her as another human being. She is passionate, caring, loving and understanding. All of this might be hard to read at times, especially if you don't know her on a personal level, but she has this strength within her that very few people possess.





Much of that I have been privy to as I became a mother and in turn made her an aunt. When Midget was a baby, my sister wanted nothing to do with her. One afternoon while my family was babysitting her as a favor to me while I was at work, she was handed an infant Midget and told to hold her while my mom fetched something. Midget began to fuss and my sister panicked and decided she would put her down on the blanket stretched across the carpet. Only she didn't lower her down enough, so the dull thud as she dropped the last couple of inches to the floor caused her to begin to wail.





When I returned to retrieve her in the evening, I was told of this incident and greeted with my sister's profuse explanations. "I thought she was low enough," "they shouldn't have given her to me," and "you know how I hate babies!!" were all on the slate that night. I wasn't angry and there was no harm done. I had to calm my sister down more than Midget had needed calming at the time that she was dropped. "Do you think she'll remember?" my sister added on at the end. I reassured her that she wouldn't, but over the next year she made a point of avoiding any possible baby responsibilities.





One afternoon, around the time that Midget was a year and a half old, she wandered into my sister's bedroom where she was blaring music out of her stereo and reading while reclined on her bed. Entranced by the beat, a toddler Midget began to bounce up and down and clap her hands. I didn't realize it then, but at that moment the tide was forever turned. Looking at her young niece, my sister later related to me that she was "kinda cool.... for a baby."





Since that day, my sister has gone above and beyond as an aunt. Far more patient than other individuals her age, she will spend hours teaching my daughter how to draw animals, demonstrating techniques that she's learned in art class. She offers to watch movies with her, go on walks with her and generally is the person that my daughter refers to as being her "favorite aunt." For all of the claims about people with autism being closed off from interpersonal affection, my sister has found a way to express her love for Midget. While there are few hugs, there are always generous birthday and Xmas presents, time spent teaching and lessons learned in understanding.





Even the obsessive nature that is seen as a detriment in the symptoms of autism is a winning feature in the eyes of child. (And subsequently in the eyes of that child's mother.) My sister's insane love of Halloween has brought us years of complementary costumes, from Little Red Riding Hood and the Big Bad Wolf to Daphne and Scooby Doo. How anyone could attribute that preoccupation (one week after Halloween '06 was over, my sister was ready to plan the next set of costumes) as something negative is beyond comprehension to me.





I've often tried to explain my sister and my relationship with her to other people, often times greeted with a polite but unknowing smile. There is almost a hush over the autistic community, what with all of the information readily available trying to train you that the symptoms of autism can be stifled, overcome, "cured." In an attempt to protect themselves, many of the online communities that share stories of what life is like living with Asperger's keep certain entries private, visible to only the community's members and not the internet readers at large.





I discussed with my sister whether or not I could share her name or her picture and even she cringed when trying to decide whether or not she was OK with that. It is a rough thing to deal with, knowing that there will be a strong backlash against her, one of those who feels as if there is nothing to "cure."





She tried to describe her emotions to me about this, explaining that she often feels "paranoid" when she hears people speak in different languages or hushed tones around her. She assumes that they are talking about her and that makes her very "emotional. And I can't control my emotions very well. I'll start crying and I can't stop and people get weirded out by that." She started to tear up while explaining this to me, dabbing away at her eyes with the neck of her t-shirt. "My tears betray my emotions," she continued. "It's very frustrating."





I joked with her that it was frustrating to live with her at times as well. There are moments when in a conversation with her where you can tell that she just turned the tape on in her head. That obsessive nature again at work, the words spilling out of her mouth are a set of pre-recorded bits of information that she's logged away, ready to share. You can interrupt her when she's in the middle of it and watch her expression. She stops talking because that is the socially acceptable thing to do, but looking into her eyes you know that all she's really done is put that tape on pause. As soon as you are done adding your piece, the tape player kicks back in, right at the place she left off.





It's a feature of hers that I've learned to live with and even grown a certain degree of awe over. It is the easiest way for me to explain that she just is who she is, Asperger's being just a feature of that, much like a "normal" person might be described as being "outgoing," "talkative," or even outright "obnoxious." It is what makes her who she is, that being my sister, my daughter's favorite aunt and my friend.





When I asked her to tell me what the hardest part about being autistic was, I was greeted with a response that I was prepared to get.





"Ummm...." she began to droll while I waited patiently. Finally she looked over at me and threw her hands up. "I'm not good with those things, you know?" she finished with a short chortle.





Yeah, I know.







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