Odd behavior is quite common and in many cases expected in my family. However there is far more to my sister Allison than odd behavior. Quite simply, something went wrong. Alli’s problems were slow to reveal themselves. They unfolded from her slowly over the years like the petals of some strange flower you cannot quite identify. She was the third of our mother’s pregnancies and by far the most difficult. My mother was anemic at the time and sick a lot. However all seemed right with the world when on September 5, 1970 a beautiful, fat baby girl was born and joined her two big sisters at home.
“The first thing we noticed was that she had trouble holding her head up”, my mother has said many times, followed by “We thought her muscle tone was slow developing that’s all. No mother wants to even consider things might not be quite right with their baby”.
Of course eventually Alli could hold her head up and she caught up just fine with the rest of the babies. Aside from being a little short for her age she seemed like a healthy little toddler. All of our family pictures would support that; they show extraordinarily cute little girl with wheat colored curls and sparkling navy blue eyes. She may have marched to her own drummer even then, for example in photos of her with our cousins of the same age, Alli is forever the one standing on her head for no reason or lifting her dress up, but hey, that’s just charisma, right? So she was slow holding her head up, well it was just bad muscle tone. Bad muscle tone: misdiagnosis number one.
Hyperactive! That was the word assigned to Alli Cooper around the age of four or five. Also rather defiant to hear tell of it, always doing the opposite of what she was told, into everything. My sister Renee once told me the first time she knew that something was off happened after the rehearsal dinner for my aunt’s wedding. Alli along with our cousin’s Kelly and Juliette who were all born in a three month span were to be the flower girls, there were four at the time. According to Renee my mom had come home in tears and said “there is something seriously wrong with this child!” Evidently she refused to cooperate and was just a hellion! When she was three she almost choked to death when she ate the wheat stalks out of a flower arrangement. When she was four she had to be taken to the emergency room because she stuck grapes up her nose. When she was five she drove the car into a ditch.
Shortly after starting school some of Alli’s more serious problems surfaced. Dyslexia and severe learning disabilities were the words given when she was seven and already on her third school. Now a days we would never accept a generic term like “learning disabilities” but in the late seventies that was all you had to work with. It was around this time that the impulsive outburst and temper tantrums kicked into high gear. Alli’s temper tantrums were destructive sometime violent events. She would kick, scream and wail; she even broke a window or two. Her bedroom was next to mine and on many occasions my shelves would fall off their brackets from the force of her hitting the wall. The tantrums would eventually run out of steam and she would drift of to sleep howling like a dog. The sound of that kind of wailing coming from a human being still sends shivers down my spine. I might have been very young but I vividly remember Alli’s big fits.
From the ages of six to thirteen Alli was moved from one school to the next each one failing to meet her needs and failing to provide any explanation as to why. I cannot imagine the hell my sister went through as a child. I know from experience how brutal children can be to one another, but Alli was tormented more than any one child should ever be. Her frustrations manifested themselves at home with huge temper tantrums and disruptive behavior. I would be hard pressed to name any holiday or special occasion that was not marred in some way by her behavior. She demanded attention! Even when the disruption was very small there was never any denying the fact that she had to make her presence known, like deciding to feed me mud pies when we were dressed in our Eater finery. She did whatever she could to get attention and her tantrums had become so severe that a lock was actually put on the outside of her bedroom door. These were my father’s worst and final hours at home; he was relentlessly hard on Alli. They are both stubborn mules, and my father who spent less and less time at home and more time with his drinking buddies had no ability to cope with his damaged child. To my mother it was here nightmare coming true. In her eyes he was turning in to her father and that was more than she would bear. I guess you could say that Alli was the final nail in the coffin of their marriage. I know that she has always felt somewhat responsible, but what child doesn’t. After I was born it was clear that we would have to move into a bigger house, or else the three girls would have had to share. According to my mother, when Renee and Pam found out that Alli might be moving up to their room they entered panic mode and started hiding all of their stuff so Alli wouldn’t get into it, break it or eat it. Needless to say we got a bigger house, which meant for my dad, bigger pressure. So I always felt somewhat responsible just because I was born and added a mouth to feed. I know that guilt is illogical, but it’s there just the same. One day he was gone and it was just these females and I. I hardly noticed. I was playing Barbies.
I am not sure when the word “retarded” first entered my vernacular. I remember getting into a spat with a girl in my class when I was in the fifth grade. I had gone to the same small catholic school with the same kids since kindergarten so everyone knew everyone else’s family at least a little bit. I do not remember what the argument was about, probably something very important like who had the most Garbage Pail Kids cards, or who wore the coolest Jams, however it resulted in her saying my sister was retarded. It was like having the wind knocked out of me. Of course I knew this was true but no one had ever used that word before. I immediately started crying and the girl, whose name I very well remember was tripping all over herself trying to apologize.
No matter what she was or is one thing is for sure. Alli was my best friend when I was a little boy. Let us not forget that I had a tendency to be a tad flamboyant as a tyke, other than my cousins, kids weren’t lining up to ask me over to play. Other kids were not as interested in trying on my Grandmother’s hairpieces and lip-syncing Have You Never Been Mellow as I. Alli was my playmate, my constant. She taught me how to roller-skate, how to ride a bike. We played house and school, and Barbies. We sat in our basement together for hours on end listening to storybooks & records, the ones that chimed when it was time to turn the page.
Alli loves me with a force that few people experience, a sometimes overwhelming force. Once when I was a baby my mom heard crying coming from my room. She went to check on me but I was in my crib cooing, happy as a lark. Alli was on the floor rubbing her chin “that damn thing hurted me” she said, pointing to the railing of my crib, “I was just trying to lookit dat boy”. She loves me so deeply. She always calls me Boy or Cub because we used to just role around on the floor like bears. When she looks at me with her sparkly blue eyes I see such adoration in them that I feel unworthy. In my family the four children were put into two categories “The Girls” meaning Renee and Pam, and “Alli and Jake” for Alli and myself. You had to say it really fast though “Alliandjake” like it was one word. “Alliandjake”, we were a unit, a team, at least for the first several years of my life. I was ten years old when I realized I was passing ahead of her.
When Alli hit puberty the shit hit the fan. Whatever had been wrong in her hard-wiring finally short circuited. She was diagnosed as manic-depressive, which was later changed to Bi-polar and Obsessive-Compulsive. All of this on top of what we already knew was wrong, the intellectual slowness and hyperactivity. The fighting and the fits and the out of control behavior culminated one Christmas morning when she went absolutely bonkers because she couldn’t play Atari. If you ever doubt that a simple game of Frogger can lead to one to being institutionalized I am here to tell you it can! Alli spent almost the next year of her life in a mental hospital, which she for some reason loved. That should tell you a little bit about her. She finally found a place to fit in. She was thirteen I was eight. I remember that spring when “The Wizard of Oz” came on TV for its annual viewing I realized she wasn’t there to watch it with me and I cried.
I’ve cried an ocean of tears for and because of my sister. There have been times were she found peace at a school or a program but none of them last and she’s right back to square one. “I fall in the cracks Boy”. Those are her words, and how can you respond to them? How can you convey the pain of someone who is so keenly aware of their differences and limitations? She has grown up watching our sisters and our cousins going to high school and to college. Getting married and having babies and she knows she’ll never have that. Once she said, “sometimes I want to take a hammer and bash my head in so I’d be a vegetable, then I’d have a place”. There is such a hideous duality in the way I feel about my sister. I love her fiercely and protectively and I have such empathy for her that it breaks my heart. Once, when I was forced against my will to go to church camp with her I hurled a brick at some kid’s head because he called her a fat retard. I would never have defended myself with such ferocity. At the same time I am so very resentful of all the attention she has demanded, all the time and energy she has sucked out of my mother with her unending needs and demands, and all of the pain she caused. I said in the beginning that it was possible to know something and to not know it at the same time. Well I am here to tell you, you can love someone and at times hate them too.
Every person’s life is full of unanswered questions. Our family however got at least a clue when Alli was in her 20's. A Doctor finally put together that she’d had a stroke, either at birth or in the uterus. No cause or reason was ever given but knowing that in some strange way comforted me. After a lifetime of trying to find the ways to explain or describe Alli I could finally say “this is what happened, this is the reason she’s 34 and has a Little Mermaid bedspread and is far too fond of Mary Kate and Ashley than she should be.” In the end though, I don’t really need a reason or an answer. My sister is who she is. There is no “what if?”, or “what would she have been like?” life happens. Sure things could have been done differently. My mother always did too much for Alli and in some ways created a monster but she did the best she could. She was pretty much doing it by herself and children born with special needs do not come with instruction books. In all of Alli’s various endeavors we have met so many children whose parents could not rise to the challenge and they were abandoned, left to be raised by a state that had few resources, or nightmarish foster homes that were not prepared for the challenges. Even now the fellow outcasts she befriends come from such horrific backgrounds they would curl your hair. My mother stepped up to the challenge and kept her family together. That is an amazing feat, so I certainly won’t judge her for doing what was easy though not always best. And sometimes it was easier just to do for Alli than to make her do for herself.
In spite of all the chaos in our house I was still a pretty happy kid. When I think back to those years I honestly recall our house was being full of love and laughter. Alli used to be obsessed with her tape recorder. She would record her favorite shows, family dinners, even me being potty trained. I am more than a little uncomfortable knowing that somewhere on the planet is a cassette tape of a two year old me saying “leave me ‘lone, I tryin’ to moop!’ She recorded every move we made and provide running commentary. “Allison turn it off,” my mother would say when the dinner table conversation would turn into something she felt was inappropriate, which it always did. I was notorious for spilling my milk which for some weird reason was the one thing that would make my mom’s head spin. She didn’t want her reaction caught on tape I guess. Or someone would belch and we’d giggle. Or someone would say something off color, or one of my sisters would say something about her period which seemed to me an everyday occurrence in our house instead of once a month. My exasperated mother would always say the same thing “What if I had a friend here”? To which one of us, after a few moments of stifled giggles would respond, “What if you had a friend?” then erupt into laughter. The years after my parents divorce were in some ways the best and the worst. Renee, Pam and I each had different ways of coping. I escaped into the world of make-believe, which I had so eloquently mastered. I was very young. Renee and Pam were in their teens and had their own ways of coping. They had their own issues and have their own stories that are not mine to tell. However, as an adult I’ve discovered that they had no idea of the way I saw them, as Goddesses!