Lauren Ballantyne
22 March 2005
They sat at the kitchen table - mother and stepfather on one side, 13-year-old daughter on the other. Silence suffocated the room as the girl wondered what she had done to prompt so stern a look on her parents’ faces. Her mother sat, her soft hands together resting on the table as she watched her daughter carefully. Her stepfather leaned back in his chair with his arms hanging casually at his sides. She watched them and waited, waited for something, anything to be said.
“Laurell, honey, we’re going to have a baby,” the mother said. Her serious look melted into one of joy. It must have been nervousness the girl had misread on her mother’s face, not anger. She now saw her mother’s eyes bright with excitement. She watched her leaned forward in her chair. “You’re finally going to be a big sister.”
The girl said nothing. She couldn’t absorb the idea. A big sister. A big sister? How do you become a big sister after thirteen years of being alone? After thirteen years of being an only child? She would have to learn.
“The due date is in May. A couple weeks after your birthday.” Her mother paused. “What do you think?”
The girl thought for a moment. What did she think? What would it be like to have a sibling? This might actually be interesting. Did she want a little brother or a little sister? A brother. Definitely. She warmed to the idea and excitement began to churn in the pit of her belly. She smiled and laid down two “rules” for her parents: it had to be a boy and it couldn’t be born on her birthday. Although she knew they had no control over it, she felt that after thirteen years of sharing nothing she didn’t want to share her birthday.
Her parents laughed: “Right. We’ll see what we can do.”
* * * *
Two days after her fourteenth birthday, her little brother was born. On the 7 th of April, at 7:37am the little boy came into the world weighing in at 7 pounds and 1 ounce. He was her lucky little brother.
She was in the delivery room the entire time. She hated watching her mother as she went through the contractions, as she heard her cry and even scream. Her stepfather calmly held his wife’s clenched hand and stroked the sweat off her forehead. The sister tried not to watch, tried to keep looking at the pink floral patterns covering the wall in front of her. She kept her Spice Girls’ CD playing as loud as it would go in her silver portable CD player. Every time the song “Mama” came on she would skip the track. She didn’t want to think of her mother and the pain that she was in. It was terrifying.
Her brother was born as she held her mother’s left hand, her stepfather held the right. The boy screamed immediately and there was a sigh of relief throughout the room at the sound. The girl craned her neck to catch of glimpse of her brother as the doctors cleaned him off. He was very small and very red. His face was squished with anger as he squalled loudly, filling the entire room with his voice. How could such a little thing make so much noise?
The doctors gave her brother a quick examination and cleaned him off on a small table they had wheeled into the room; they wrapped him in a soft blue receiving blanket and covered his small, bald head with a little blue beanie to help keep him warm. The nurse brought him to her parents and they each held him, kissed him, and loved him. The sister stood close to the bed and looked down at her brother. He looked so fragile with his tiny fingers and even smaller fingernails that she thought he might break if she touched him. His face was slightly squished looking but she thought he was beautiful. Later her family would joke that he had big lips that made him look like a monkey. She secretly thought they were amazing. His eyes were squeezed shut – they told her that he would open them in a day or two. When she first saw his eyes she was amazed at the deep blue that they were and hoped that they would stay so beautiful.
The first time she held him was that day in the hospital room. She was terrified at first and refused to hold her brother. She would rather admire his miniature body from a safe distance but her mother insisted. Safely seated on black swivel chair next to her mother’s bed she took her brother from her stepfather, carefully cradling his head and neck. She looked down into the face of her brother as she held him in her arms for the first time and she cried.
This is my brother. My brother. This is my Stevie.
She talked to him softly as she held him. Her voice was low and soothing, barely above a whisper, as she introduced herself to him, “Hi, Stevie. I’m your big sister; my name is Laurell.” She stroked his warm cheeks with the back of her fingers. “I’m going to take care of you, you know. Because that’s what a sister does; it’s my job. I’m gonna teach you everything you need to know, little man. We’re gonna have fun, you and I.”
* * * *
“Mom, do you need help? He sounds fussy today.”
It had only been a few months since her mother and brother had come home from the hospital. Her mother had not yet returned to work and her brother was not quite sleeping through the night yet. The sister took it as her own personal duty to help out her mother whenever possible.
Upon hearing the sister’s voice, her mother looked up from the large bed where she lay next to her brother. Her brother was lying on his back with his arms and feet happily waving in the air, large blue eyes wide open. Apparently he wasn’t quite ready to sleep yet, even though it was over an hour past his normal bedtime. Her mother had been trying to put her brother to sleep since eight o’clock but nothing she had tried seemed to soothe him. She had tried the rocking chair, walking him back and forth across the room, slow dancing with him, singing to him, laying him down on the bed – but nothing would calm him. As, she got up from her place on the bed, she wondered to herself how would her daughter do it. If she were unable, at least she would be allowed a moment of peace while big sister had a go.
In ten minutes, her brother was asleep, enfolded in the arms of the big sister.
Her mother stood outside the door, relieved to get a moment to herself, relieved that the boy had finally closed his eyes to sleep.
* * * *
A few months have passed. Her brother is crawling now and getting into everything. Keep everything you care about out of his reach. He’s already ripped up the sister’s February issue of Teen Magazine that she left on the living room coffee table and the fur of her favorite brown teddy bear has been matted with baby drool. He puts everything he can get his hands on in his mouth and up his nose. The sister has learned to shut her door and to keep everything she cares about up high and out of reach. There are too many things that she can’t risk loosing at the grabbing hands of her brother.
You can’t loose sight of him for even a moment. He’s already been onto the second shelf of the entertainment center before her mother caught him and pulled him off. The sister laughed as her mother told the story to the entire family at dinner. Who knows what he was trying to reach and how high he would have gotten if left on his own for even a moment more. He loves to climb on anything and everything possible (the backs of the striped couches in the living room, the tiled counter tops in the kitchen, the overfilled bookshelves in all of the bedrooms). His sister swears that he must be part monkey.
Keep doors closed, stairways guarded, eyes open. Watch out, he’s on the move.
* * * *
Her brother is constantly smiling, happy, and full of laughter. His favorite game is to play peak-a-boo while he is in red swing in the back yard. Back and forth he goes. As he swings toward her she uncovers her face and shouts, “Peak-a-boo! Stevie, I see you!” She pushes him higher and covers her face again. His smile is contagious. He laughs and she laughs even harder.
He has even learned to smile for pictures now. Only he smiles, not necessarily at a camera, but at its flash – or any other flash of light. If a light switch is flicked on and off, if a flashlight is turned on in a dark room. It’s funny how little babies pick things up.
One Sunday night, her mother, brother, and the sister go to the grocery store. As they are in the minivan in the parking lot about to go in, the car parked in front of them turns on its headlights as it begins to back out of its parking space. As her mother and her start to step out onto the dark pavement, the headlights fill the interior of the car. Laughing, they both turn and watch her brother as his face instantly ignites with a brilliant smile. He thinks the light is the flash from a camera.
* * * *
One evening, the sister lay in bed whispering quietly to her mother as the two of them wait for the 12 month old boy to go to sleep. They quietly discuss the sister’s school schedule. She is now a freshman in High School and needs to start thinking about her school schedule for the following quarter. Should she take Spanish or an elective? Her mother was pushing for the language, daughter was hoping for photo.
Her mother was just explaining the importance of learning another language when all of a sudden her brother pushed himself up on his hands and looked at each one of them, one and then the other, directly in the eye. He grunted as if to tell them both to shut the hell up. I’m trying to sleep here. He gave them each one last look and flopped back down on his spot in the bed between his mother and sister. The two of them tried to stifle their laughter at the boy’s wordless reprimand but neither could believe what had just happened. The sister kissed her mother and brother each on the cheek, said her good-byes and went to bed laughing.
* * * *
Months later, her brother went into the doctor's office with an insignificant cold. Today was the day he had to get his shots. He was getting the routine four that day: HIB, DPT, MMR, and Polio. No one in the family was worried because this was routine and he was in the doctor’s hands. Doctor’s know what they are doing; therefore, he would be completely safe.
Unfortunately, something went wrong. As he came home from the doctor's office with a Winnie the Pooh bandage covering the wound, he was crying louder than expected and was unusually unhappy. His sister tried to comfort him, tried to play peak-a-boo on the swing but he wouldn’t cheer up for anyone. The entire family assumed that this was simply because he had a cold and was just pricked with a needle. This sort of attitude was to be expected from a 15-month-old baby after such a trying day. But what was to follow definitely was not as expected.
* * * *
Over the next three months, the boy stopped smiling at flashing lights or at cameras, he stopped waving hello and goodbye, he lost all eye contact, and stopped playing simple games with his family. He finally stopped eating many foods he had once loved - eggs, bananas, rice, crackers, and juice – limiting himself to only five or six certain items like peanut butter and jelly sandwiches, chicken fingers, milk, and French fries. He no longer spoke the few words he already knew or even babbled at all; “dada,” “mama,” and “lala” were no longer heard in the house. He seemingly forgot how to point and say “milk” or “coo-ie,” which he had been asking for whenever the thought prompted him. Peak-a-boo with his sister no longer prompted his laughter.
One evening her mother and stepfather even noticed a red, scaly rash on his belly and both of his arms as they took off his clothes to give him his evening bath. As the nights went by, he began to wake up every few hours and finally wouldn’t sleep more than two hours at a time, no matter how exhausted he was. He no longer would sleep in his own bed so her parents brought a mattress into the room and placed it on the floor next their own king sized bed. Each of her parents would switch off on who would sleep on the floor that night – it was the only way one of them could actually get some sleep because her brother took up the majority of the bed as he tossed and turned. The sister eventually had to rely on a noisemaker to keep his cries out of her room as he woke up throughout the night.
* * * *
Her brother sits in the middle of the living room, staring up at the TV resting on the large wooden entertainment center. As he watches the Lion King on VHS, he absentmindedly fingers the bright red tag on the new TY Stuffed Bear his mother had bought for him at Toys R Us that day. The sister walks into the room and sits down on the floor next to him.
“How’s the movie, Stevie?” She asks. No response. He doesn’t even look at her. His eyes remain fixed as he watches Simba sing, “I just can’t wait to be KING!” The bright colors from the screen – the pinks, yellows, and greens – reflect and dance in his blue unblinking eyes.
“Stevie, is that the bear Mommy got you today?” Still no answer, no glance. “Stevie, look at me.” Nothing. He doesn’t even flinch.
His sister gets up and stands in front of the TV, looking down at her brother. He finally moves. A foot to the right to peer around the body of his sister.
She turns around and shuts off the TV. Immediately her brother screams as if she had stabbed him in the gut. He throws the bear down at the ground and screams.
“Stevie! Stop! Stevie! Look at me!”
The boy screams and screams, looking nowhere but at the black TV screen.
The TV comes back on and his sister leaves the room, defeated.
* * * *
During the summer just after his second birthday, the entire family takes a trip to Lake Tahoe to visit the grandparents and stay in their beautiful home on the lake for a week. What is supposed to be a relaxing summer vacation is filled with constant temper tantrums and screams.
Midst the crying, the sister hears her Grandma and Grandpa begin to criticize her mother and stepfather for not disciplining her brother: “Discipline is the problem here, Anne. He cries and screams like that because you two let him. He knows what he can get away with; he knows how to get what he wants. You can’t let him do this.” The sister closes the door to the guest room, not wanting to hear more.
Later in the day she is left alone in her room, attempting to read her faded and yellowed copy of CS Lewis’s The Last Battle while she hears her parents dealing with her screaming brother in the next room. It sounds as if he is being beaten, as if something is terribly wrong. It’s the sound of a child in pain. There is no cause for that scream and there is nothing that can be done to make it stop. Tears roll down his sister’s cheeks as she tries to block out that horrible scream. It hurts her to hear him cry like that. Finally, when her concentration has failed and reading is no longer an option because of the disturbing cries, she leaves the house entirely and walks through the park alone - anything to get away from the screaming for just a little while.
* * * *
Her brother is sick again. Her parents think he has another sore throat because he keeps rubbing his neck and crying but they cannot tell for sure. Her parents have given him the cough syrup the doctor prescribed but it doesn’t seem to be helping. They all sit in the front room, her mother holding her sick brother and the stepfather sitting silently on the opposing couch. The sister sits next to him staring at the floor, looking down at the white carpet that is slowly turning a light shade of gray as it is being overcome by the dirt brought in from the backyard.
“Stephen, what’s wrong? Tell Mommy what hurts.” Her mother holds the relentlessly screaming brother in her tired arms, helpless and unable to make his crying stop, to make his pain stop. “I don’t know how to help you. I don’t know what you need.”
Tears of frustration run down the big sister’s face as she watches her brother cry, as she watches him looking at her mother for help when no help can come. How can you help someone when you don’t know what kind of help is needed?
There are still no words heard coming from the 2-year-old’s lips, only cries and screams.
* * * *
The boy stands on the very tips of his toes gesturing with both hands, but not pointing, to a shelf in the pantry. His sister looks down at him, then back up at the shelf, trying to make out what it is that he wants. She picks up the yellow box of Multigrain Cheerios on the second shelf down.
“Do you want this, Stevie?” She puts the box back on its place on the shelf when he continues to fuss.
She picks up the pink and purple bag of Mother’s Animal Cookies and shows it to her brother. He stamps his foot and continues to cry.
“Honey, I don’t know what you want.” I wish you could tell me or point, she thinks, anything to let me know!
She tries to pick up her brother so he may grab what he wants off the shelf but he hits her shoulder as she gets too close to him, missing her face as she backs away quickly.
“No, Stevie! I’m trying to help you!” She backs further away as he looks angrily towards her, still not meeting her eyes. The frustration of not being able to communicate turns quickly to anger and he again tries to hit the sister. “Fine, if you don’t want my help then you won’t have it.” She slams the door to the pantry shut and walks passed her brother and into the next room, collapsing on the blue couch in the family room.
“Mom!” She calls into the other room. “You deal with Stephen. I need a break!” She leans forward, rests her elbows on her knees and puts her tired head in her hands and cries. In the back of her mind she hears her mother enter the kitchen and begin trying to deal with her brother. He continues to scream.
Her parents take her brother to the doctor for tests while the sister is at school or at home doing homework. Hearing tests, speech and neurological evaluations. Each day is filled with some other doctor’s waiting room and each day brings the same answers over and over again:
Your son’s hearing is fine. Neurologically he is fine. He’s just a late bloomer. Some boys just talk later than girls. Don’t worry about it. Be patient and he will come around.
They come home and report the results each day. The entire family knows something is wrong. Why won’t somebody tell us what it is?
* * * *
In September of 1999, her brother is now 2 1⁄2 years old. Her parents take her brother to the family doctor because he has yet another ear infection but their normal doctor, Doctor Chang, is out sick. Her colleague, Doctor King, watches quietly as the little boy is spinning in circles and laughing to himself in the corner of the room. He never seems too dizzy, no matter how long he spins, but he changes course and plops his butt on the floor to play with the dinosaur toys left in the room along with other fun toys for the patients’ amusement. He begins to line them up by height. First comes the long necked Brontosaurus, then the ferocious T-Rex.
Anne, Jeremy, I think you may want to take Stephen to a specialist. I think there is something more to this behavior than simply him being a late bloomer. Unfortunately, I’m not qualified to give you a diagnosis and I don’t want to suggest anything to you in case I am not entirely correct. But what I can do is refer you to a neurologist at UCI Medical that is qualified give you a diagnosis. Here is his business card; I suggest you call him right away to set up an appointment.
* * * *
Diagnosis: Autism.
Your son has Autism. It is a neuro-biological disorder that affects physical, social, and language skills. Autism ultimately has no cure and no treatment – no real future for the child. You may call this hotline for more information, they will tell you what they can. You should consider placement options for your son and get on with your life. On your way out please speak with the receptionist to schedule a follow up visit in six months. I’m sorry.
“But what do we do?” Her parents ask.
There is no treatment for this disorder. There is nothing you can do.
“But there must be something that can be done, doctor.”
Move on with your lives. The sooner you learn to deal with his condition the better off your family will be - I promise you that.
* * * *
Silence chokes the walls of the house. The dinner table remains silent as mother, stepfather, and daughter sit eating. Her brother is in the other room watching TV as he eats a peanut butter and jelly sandwich, his favorite for the moment. She looks from one parent to the other, waiting for someone to talk, but no sound fills the air except from the TV in the living room as both parents stare silently at their plates.
The sister excuses herself after finishing her dinner, takes her dishes into the kitchen, does a half-hearted job of washing them, and puts in them in the dishwasher. As she turns to head into the living room to see how her brother is doing she hears a heated, whispered discussion between her parents. Not wanting to eavesdrop, she quickly leaves the room, attempting to ignore the terse words.
* * * *
Lacy, the sister’s best friend since kindergarten sits on her unmade bed in the center of her bedroom. The white wall next to her bed is covered with pictures of actors, actresses, and famous places, which were cut from magazines or printed from her computer, as well as her favorite family photos. Posters line the other walls – Braveheart, Titanic, Shakespeare in Love – all her favorite movies or the band of the moment. The sister sits at her desk cluttered with schoolwork and miscellaneous drawings. She sits in her chair, quietly staring out the window at the trees in her backyard.
“What do you mean your brother has Autism? What is that exactly?” Lacy asks.
The sister sighs. “I’m not so sure really. I don’t know if I understand it right. My mom and step-dad have been talking to lots of doctor’s to figure out what to do. All they’ve really told me is that Stevie has something wrong with his brain – something about the synapses, that they aren’t quite corrected right – or something like that. They said that the doctor’s say he can never get better and that there is nothing we can do. There’s no way to treat it.” Silence.
The sister continues, “My parents told me that most of the kids that get this will never talk, that they will grow up very different from how you and I did. They have to be in special-ed classrooms away from neuro-typical kids. The doctor said that kids with Autism will probably never live on their own, never attend regular school, never have a girlfriend, and most will someday have to go to special homes and institutions.”
She can’t help it, tears flow freely down her cheeks now. “I guess it means I will never be able to hear my little brother tell me that he loves me. That he’ll never be able to get a real job or get married someday.” Pictures of the special-ed kids at her school dance in her head; she thinks the way that they get picked on by the older kids, the way that they are bullied and made fun of for their disabilities. Will that really happen to her brother?
The sister cries unembarrassed that her friend watches her fall apart from across the room, knowing that Lacy offers support in her silence. She is unable to stop her tears as she thinks of all the dreams that she had for her brother that were taken away with the awful diagnosis. Before he was born she would lie in bed with her mother, her hand on the bulging belly waiting for her brother or sister to kick, picturing what it would be like to have someone to share her thoughts with, to play with, to take places. She would picture what Christmas’s would be like years down the road, what it would be like actually open presents with someone. She would picture what it would be like to teach him how to treat girls or to teach her how to deal with boys, or to talk about what it would be like when he or she fell in love one day. But now the sister cries for those dreams have disappeared. She thinks about the baseball games that she will miss, the school pageants that will never happen, school dances that he won’t be able to attend, the wedding that is impossible. She cries for the words that her family will never hear, for the future that was taken away.
* * * *
Applied Behavioral Analysis Therapy (ABA), Occupational Therapy, Speech Pathology Therapy, Tomatis Listening Therapy, Gluten-Free Casein-Free Diet, and biological treatments follow. Her brother is in therapy roughly forty hours a week and while other children are out playing games and having fun, he is inside learning. He works harder than she does even though she is finishing her last and toughest years of high school.
“Stevie, this is apple,” Valerie, one of the boy’s several ABA therapists, holds up a flash card displaying a picture of a large red apple. She puts the flash card on the table in front of the 3 ½ year old little boy and holds out her hand to him. “Give me apple.”
The sister watches from the corner of the room, trying to remain motionless to keep from distracting her brother. Her brother looks up at Valerie from his side of the table, then at her outstretched hand, and finally at the card in front of him. He reaches out, takes the card, and puts it in her hand. His sister does a mental cheer as she waits for Valerie to praise him.
“Great job, Stevie!” She claps and gives him high five. The sister follows suit and begins to clap from her side of the room, telling her brother how smart he is. The boy smiles and happily flaps his hands, looking from Valerie to his sister. He loves to please and nothing makes him happier than to be congratulated on a job well done.
“That was awesome! This is apple. Ap-ple. Lets try that again.” Silence resumes, his sister watches the procedure begin again. The card is put back on the table in its place. “Stevie, give me apple.” Once her brother masters the concept of apple alone, other flash cards will be placed on the table in order to make him pick an apple out of multiple choices. The drills will progressively get harder and harder.
Despite his age and that all his peers have advanced well past him, her brother still doesn't talk. In therapy sessions, each family member takes turns to watch as he re-learns many things like how to wave hello and good-bye, how to point, and what things around him are called. He smiles when he sees those that he loves. He can look directly into their eyes, but he still can't communicate with them. He can't tell his father what he wants, he can't tell his mother when he's hurt, and he can't tell his sister that he loves her.
* * * *
It is her brother’s fourth birthday party, which he shares with his big sister (it is her eighteenth birthday party). Bright balloons of every color paint the walls, “Happy Birthday” banners are everywhere you turn, and Blue’s Clues plates, cups, napkins, hats, and gift bags line the dining room table. The entire family has gathered to celebrate both of their birthdays.
It seems to be a normal day and is, except for a few minor details. Her brother has to have his own special cake and frosting while his family and friends have another. He is on a strict Gluten-Free Casein-Free Diet, which means no wheat and no dairy products. He can never eat the things normal four year olds eat. No chocolate, no wheat, no milk, no bread, no caramel, no cookies, no cake, no ice cream, no Burger King, and no McDonald’s. Everything that touches his lips is homemade and carefully kept free of anything that can make him sick.
Every once in a while the sister catches him as he looks over at as her as she is eating pepperoni pizza with her friends. He then looks down at her plate longingly. She can tell that he knows what he can and cannot have in the way that he looks at her greasy pizza but does not reach out for it. She guesses that other foods must look good to him, much better than what he has on his own plate. Who doesn’t like a big greasy piece of Round Table’s Pepperoni pizza every once in a while?
Sometimes he does have a bad day and tries to steal a bite anyway. The sister and the rest of the family have to keep a careful eye to make sure that he does not steal a bite of anything that could harm him. Its difficult for him at times but most often he seems content with having his own homemade peanut butter cookies, chicken fingers and squash muffins.
* * * *
Thanksgiving, November of 2000. The boy is 4 1⁄2 years old now. The entire family is over at the house for a big turkey dinner, complete with stuffing, two types of mashed potatoes, green bean casserole, and other miscellaneous family favorites. Her nine cousins run through the house chasing each other, playing hide-and-go-seek and tag. Finally, they settle down to play with her brother’s toys in the living room. Her brother sits on the floor in front of the TV watching the Charlie Brown Thanksgiving Special on cable; he ignores everybody in the room.
“Hey, Stevie. Come play with us,” his cousin, Christopher, asks as his other cousins surround him. Christopher is two years older than him. He ignores Christopher and continues to watch the cartoon. From the couch across the room, his sister watches as Christopher looses interest and goes back to playing with the other children.
Her mother calls her into the kitchen to help set the tables for dinner. She sets out the plates, knives, forks, and napkins on the two dining room tables that are brightly decorated with red and yellow colored leaves and little stuffed turkeys, one of which is holding a little sign proclaiming “Save a Turkey. Eat Chicken.” Next comes the smaller “kids’ table” where her younger cousins will be eating. She sets out the disposable plates that are covered with little turkeys and the plastic silverware that her mother bought especially for the kids. Once she finishes her duties she returns to check on her brother and the rest of the kids.
As she enters the room she sees that Stevie is no longer in his usual spot in front of the TV. Instead she sees Christopher standing facing the opposite corner of the room throwing colored plastic balls from her brother’s miniature ball pit at the wall. She approaches, checking out what exactly this new game is, and realizes that it is not the wall that he is throwing the balls at but her brother.
The sister rushes forward, pushes Christopher aside making him fall hard on the ground and drop the remaining stash of colored balls. She picks up her brother who was huddled in the corner with his hands covering his head, emitting a high-pitched squealing sound from his clenched mouth. The sound is too high, higher than she thought anyone could make. She clutches her brother’s head to her body with her hand, supporting his weight with her other arm and tells him that its okay, that he’s okay. His eyes are stilled closed and the high squealing sound continues. The sister rushes out of the room clutching her brother’s body tightly to hers and leaves Christopher crying on the ground.
* * * *
One weekday evening, her family noticed that her brother was being abnormally unfocused and his stimulatory behavior had extremely increased. The sister noticed him spinning in circles in the corner of the living room as he used to right around the time of his diagnosis. Since the beginning of his diet and therapy, most of his “stims” had been lost or had at least significantly decreased. No one in the family had seen him spin like this in over a year, and even then it had only been for a few moments. As the sister called her brother’s name and asked him to stop, he continued to spin and spin in the corner. She ran over to him and grabbed his shoulder, stopping him in mid spin. He didn’t look up at her.
“Stevie, look at me.” She kept her hand on his shoulder. “Stevie.”
He looked up at her face but didn’t meet her eyes. She tried a few more times and finally their eyes met. She let him go and went to find her parents. Over the next three days her brother had a bad case of diarrhea, developed a red rash that lasted a month, and continued to stim until physically stopped by a family member. Her parents worried that something was going terribly wrong, none of these things had happened since they began his many treatments. Finally, her parents called the family physician that had been treating her brother’s autism.
“Jeremy, is it possible that Stevie could have gotten his hands on something not in his diet?” The doctor asked.
Her stepfather thought for a moment. “Not that I am aware of. His mother and I are very careful about what we give him and Laurell knows better.” He paused. “I’ll ask the therapists. Sometimes they give him snacks during ABA for reinforcers. In the meantime is there anything that we can do?”
“No, this happens sometimes. I’ll call in a prescription for the rash. Put it on twice a day until it subsides. Should only take about a week as long as he doesn’t get anything else outside of the diet. As for the diarrhea, keep him well hydrated….”
The following day, her parents asked all the therapists what they had given her brother to eat the past few days. Each therapist pointed out what foods they had taken from the pantry, but finally Marissa, the newest therapist on staff, pointed out some new crackers that were bought from Trader Joe’s that week. They had wheat in them.
From that day forward her mother took a large black sharpie and marked in bold black letters on each bag, box, and container what her brother could and could not eat. Each article of food read, “For Stevie” or “NOT for Stevie.”
* * * *
“Hey Mom, I really need a new pair of jeans. Two of my old pairs are starting to rip, so do you think we could go by the mall this weekend?”
Her mother is in the kitchen baking another batch of her brother’s GFCF pear muffins. She stands at the kitchen counter in jeans and a faded pink t-shirt, her short brown hair pulled into a ponytail to keep her fly-aways out of her face, as she is stirring the rice flour into the concoction. “I don’t know, honey, we’ve got a lot to do this weekend. Can you have Lacy go with you? I’ll give you some money. How much do you think you’ll need?”
“But I want you to go with me. Lacy has an essay to write and a midterm to study for,” she quickly lies. “Come on mom, it will only take a couple hours. Besides, we haven’t had a date for just the two of us in over a month.” Her voice reaches that high squeaky tone that she gets when she really wants something that probably isn’t going to happen.
“What am I supposed to do with your brother?” Her mother ignores the tone in her voice, still not looking up from the bowl of muffin mix.
“Have Jeremy watch him. You know, father and son can have some time together to play at the house, while mother and daughter go shopping. See? I have the perfect plan,” she says hopefully.
“I don’t know, hon. You know how I hate leaving your brother.”
Silence. “Mom. You know, you do have two children.” Her mother finally looks up at her. Shock dances across her face. “Stevie isn’t the only one who needs you around.”
The sister leaves the room before her mother has the chance to say anything, walks up the stairs to her bedroom and shuts her door. Alone, again.
* * * *
The sister watches as her brother starts to make progress, as all the hard work starts to pay off. The illnesses begin to fade, the tantrums become less and less frequent. People stop staring in the grocery stores, at toy stores, and at the mall. She watches as her family begins to fade into the background of buzzing everyday life.
One day, as she comes home from her apartment to do laundry, the sister sees an envelope on the kitchen counter with her name on it. It’s in her mother’s handwriting. Her mother smiles as the sister looks at her from across the room with questions dancing in her eyes. She tears the envelope and inside is a homemade Valentine’s Day card from her brother. It was big, red, and covered in child-like scribbles. But amidst the colored markings she made out his name. S-t-e-p-h-e-n. The letters were lopsided and the ‘n’ looked more like an ‘h’ but it was definitely his name. She looks back up at her mother in surprise.
“Did he write this?”
“Yes.” Her mother’s faced shined.
She looked back down at the page. Then back up at her mother. “Without help?”
Her mother nodded.
“That’s amazing!” She turns and gives her little brother a hug, whispering into his ear how much she loves him, and how well he’s doing.
* * * *
Her brother slowly learns how to talk after hours and hours of speech therapy. He first learns to make sounds with his mouth, how to shape his lips and form his tongue to make different vowel sounds. He then learns to blow: blow bubbles in the air, blow out birthday candles. Then finally come the words. At first he sounds as if he is deaf. Those around him can make out what he is saying but the words are still ill formed, as he doesn’t have complete control over his mouth and oral motor skills.
He learns how to say his name, how to say the names of his family, and how to say simple words. Next come simple phrases: “I am Stephen.” “I am five years old.” “I am hungry.” Then comes conversational speech: “How old are you?” is now followed by “I am five years old. How old are you?” (This prompts a few giggles from the older ladies at the supermarkets who stop to talk with an irresistibly cute blonde boy.)
Finally come the words that his entire family thought they would never hear, the words that they were told to never hope for. His sister hugs him and tells him how much she loves him. The little boy doesn’t miss a beat: “I love you too, Laurell.”
Valerie comes back to the house after taking her brother to the park as reward for a job well done in therapy that afternoon. She approaches mother and sister who are in the kitchen discussing dinner options for that evening. Valerie has pained look on her face as she excuses herself for interrupting the conversation.
“Something strange happened while we were at the park just now. I thought I should tell you about this right away.”
The sister and her mother wait for Valerie to continue, expecting something awful. Did he injure himself, did he injure another child….?
“As Stevie was playing on the jungle gym he shouted ‘We’re all gonna die!’” at the top of his lungs - completely unprompted. This really worries me….
Mother and sister stop for a moment, then burst out laughing. Valerie’s looks wounded and her eyes widen even further.
“Its from one of his computer games, Disney’s Atlantis. One of the character’s says, “We’re all gonna die” if you fail a mission,” her mother explains as they continue to laugh. “He plays the game constantly. He purposefully messes up missions over and over because he thinks it’s hilarious.”
Valerie’s body relaxes. “Oh my God, for a second I actually thought he had some weird premonition all of a sudden. Like the world was going to blow up or something.” She shakes her head and laughs at her mistake.
* * * *
Her brother is now seven years old. This morning he puts on the red and gold striped Harry Potter shirt (he was Harry two years in a row for Halloween and watches the movies constantly – he can even recite half of the lines from memory. He routinely shouts “alohomora” at doors that are locked and fully expects them to open.) and new pair blue jeans that his mother left on his bed and straps on his white light up sneakers.
“Stevie, come downstairs please!” Her mother calls from the kitchen. “It’s time for breakfast!”
Answering his mother’s call, he races down the stairs, jumping off the last two with a thud. He runs into the kitchen and sits at the kitchen table where she has left out his glass of rice milk, banana, and Gluten-Free Casein-Free squash muffin. Immediately, he begins to stuff his face as he watches the morning cartoons. Sponge Bob Square Pants is a morning favorite.
“Are you excited for your first day of school?” The sister asks when she walks in the room. Her mother stands at the other end of the table, putting his crayons, his notebooks, and lunch into his blue backpack that looks too large for his body.
The boy nods, not wanting to stop eating to answer, not wanting to take his eyes away from the TV. His sister laughs and, not wanting to disturb him further, quits asking him questions.
“Valerie is going to be there today. She is so excited that she gets to see his first day of school,” her mother says quietly to the sister. “After all these years the hard work is paying off.” While her brother is going to a neuro-typical first grade classroom he still needs an aid full time to help him.
As her mother finishes packing his things, her brother finishes his breakfast and takes his plate and glass to the sink to be washed later.
“You ready to go?” She hands him his backpack and he swings it over his shoulder.
The boy nods again, and the three of them walk out the front door to head to the boy’s first day school.
Notes from the author :
A special thanks to all those in Jeffrey’s life. You make a difference. Your kindness, understanding, and patience touch our hearts in such a way that we will never forget. Your love gives us hope.
A special thanks to all those families of other children with autism out there. You are angels. You fight a most difficult battle every day, a battle that many could never handle. I commend you and your strength. My heart and my prayers go out to you.
And a most special thanks to our heavenly father who has been with us every step of the way and will be there the all days to come.
About the author:
Lauren is Jeff’s big sister. There is a 14-year age difference between Jeff and Lauren. Lauren has been an instrumental person in Jeff’s life providing much love and support. THIS ESSAY is a follow up essay she wrote from a sisters point of view on Autism and the family.
Lauren wrote her first essay about Jeff, “Jeff’s Story Part I” originally as a high school junior and “Jeffs Story Part II” in late 2003. She liked the original Part I essay so much she used it as part of her college entrance paperwork. University of California of Irvine accepted Lauren starting in September 2001. She wrote her follow up essay “Jeff’s Story Part II” and will continue to follow up with new essays as Jeff continues to improve every day.
As a parent I am so proud of Lauren and her accomplishments but most of all I am so proud of her as a person. She has a big heart, is very intelligent, funny and caring that she is an honor to have in our family. Parents are supposed to raise and teach there children, but to my surprise Lauren has been one of the best teachers to me in my life. I love you Lauren!
