
"The Other Side of the Wall"
By Katie Grant
From my bedroom, I hear him running up the two steps at the base of the staircase as I try to focus on the math worksheet in front of me. He hums as he hops up and down on the landing. I stare at the worksheet, willing myself to remember the formula I need to use as he talks to himself and practices the cheer, chanting—“Let’s go devils! Gooooo!” The boys state swim meet is tomorrow, which calls for countless run-throughs of cheers. After he chants, he runs back down the steps--thump thump--continuing to hum. He takes a lap around the family room and is back at the base of the stairs, shouting “Go! Go! Go!”
Five minutes later and I’ve only completed one problem. He continues to run up and down the steps. Please stop running. My thoughts do nothing to diminish his energy. That’s it. He doesn’t stop bouncing around until I tell him to sit down. Eddie, my fifteen-year-old-and-not-so-little-anymore-brother, never stops moving.
At the state swim meet the next day, I find Eddie pacing by my friend at the concessions stand. He is picking at his hands; one of his many stress habits. My friend tells me Eddie has lost his wallet. I ask Eddie where his wallet could have gone, throwing my hands up in exasperation. He stares at me with anxiety in his eyes and clasps his hands together while he shifts his weight back and forth on the balls of his feet. “Uhhhh” is the only response I get. As I’m about to question him more, my friend steps in. He tells me someone at the athletic office will help us find the wallet.
I thank him and march toward the athletic office with Eddie in tow. I find a staff member and tell him the situation, and we walk toward the gym. He asks Eddie about the last time he had the wallet and where he was sitting in the gym earlier that day, but these are questions Eddie cannot answer. After a few “ummms” and a “well, I’m not sure,” Eddie wanders away and paces around the gym, voicing his worries about missing the 100 butterfly race. The staff member looks at him with confusion in his eyes, and my protective instinct kicks in. He asks me if Eddie is okay. This is my cue. I explain that he has high-functioning autism, that he loses things regularly, that he can get very anxious—a rehearsed speech I have given more times than I can remember.
Eddie continues to pace, mumbling about missing the race—I brainstorm where the wallet could be. He doesn’t seem to care that he has lost forty dollars, but I know that if I don’t find it, I will be victim to him freaking out the entire ride home. It’s my job to help him.
A few minutes later, my friend texts me that they found the wallet. Relief washes over me as I tell the staff member and Eddie.
“Great! So I can go back to the meet now?” Eddie asks over his shoulder, heading back to the natatorium.
“Yes,” I sigh.
On the outside, Eddie looks like a typical teenage boy. About 5’8’’, skinny, big blue eyes, light brown hair, Irish skin. He is a replica of my dad—put their pictures from high school together and the resemblance is uncanny. Someone who doesn’t know Eddie wouldn’t know anything is different about him just from looking at a picture.
On the inside, Eddie is made up of frayed nerve endings that impair his social, cognitive, and motor skills. He sometimes has trouble articulating what he wants to say, has a hard time holding conversations, struggles with school, and is always moving. He was diagnosed with high-functioning autism when he was two years old.
Autism, by definition, is a group of complex disorders of brain development, characterized in varying degrees by social interaction, verbal and nonverbal communication, and repetitive behaviors. Because Eddie is high-functioning, he can be in regular gym class and not the Adaptive P.E. class. He can sit in a regular classroom. He can tie his shoes, take showers, make a hot dog in the microwave, and go on bike rides to Western Springs. He can handle being at a concert or Blackhawks game. He can go on long road trips to Florida and plane rides to London. He can do his homework, with assistance from my parents. He can talk fluently, have conversations, and express his feelings, though limitedly. He can swim on a club team and the high school team. He can be a part of the marching band.
Like a typical teenager, Eddie loves his iPhone and usually has his headphones in, listening to heavy rap music or watching a swim race. He spends a copious amount of time scrolling through social media and memorizing directions to various places. He is a bottomless pit when he eats. He embodies the teenage boy wardrobe—Under Armour, Adidas, Nike, Chicago teams, his favorite college teams. He is exceptionally gifted in music—Eddie plays the piano, drums, and will be in Wind Ensemble, the highest band at Central, next year playing percussion.
From an outsider’s perspective, Eddie seems very capable of living like a normal person would. However, his disorder still creeps into his everyday life. The biggest things Eddie struggles with are communicating his feelings and ideas, understanding abstract concepts, and forming relationships with people. These challenges make friendships and a social life very difficult, especially for people with autism who are aware they’re different from others, like Eddie.
Autism is a complex gray area that does not have black-and-white answers on how one with it can perform in school, the workplace, social situations, and everyday life. Autism leaves my family and me with too many question marks and not enough conclusions on helping and improving Eddie’s life. Autism throws curve balls that my family and I are not ready to hit, that leave us striking out at the plate as Eddie grows up. Autism is hard.
Over the years, my relationship with Eddie has grown. When we were younger, we played Lego Star Wars, Super Mario Brothers, Mario Kart, and other Wii games together. He didn’t have much interest in playing games like House or Pirate Ship—imagination is not his strong point. Since he started high school, our bond has strengthened. Perhaps it’s because we spend more time together being at the same school and swimming. We go to each other’s meets. He comes to my water polo games; I go to his band concerts. We talk on the car rides to and from school—he’ll ask me how my day was or how my practice was, and I will do the same. We’ll talk about some new social media trend, or he’ll tell me about a swimmer breaking a national record. I ask most of the questions, and he usually gives me answers in bits and pieces. Sometimes, we crank the volume and sing along to the radio; he loves that. I’m thankful for those drives with him where all I have to worry about is making sure we have a good song to sing along to.
I try to help Eddie by being there for him. When he performed a remarkable xylophone solo in eighth grade and when he dropped time in all of his events at the JV Invite swim meet his freshman and sophomore year, I was there clapping for him. When he needed someone to make a poster so he could ask a girl to Homecoming, I was there with markers. When he lost his wallet, I was there to find it. I try to do all I can for him because I can’t help him when he’s questioning why he has no one to hang out with on the weekends. I can’t help him when he’s annoyed that he has to be in the Special Education English class. I can’t help him when he gets looks from people because he flaps his hands and crosses his eyes in public. I can’t help him when he sees his classmates getting their licenses on their sixteenth birthdays but he won’t be able to because he had to wait and get evaluated to see if he would even be eligible to drive.
Most of all, I can’t help Eddie be the “normal” he desperately wants, and that breaks my heart. It kills me that I can’t give him the “normal” that I am, what he would give anything to be, what he was born without and will never have. I wish I could help him explain how he’s feeling or speak what’s on his mind. I want him to know how to express empathy and maintain a friendship. It’s unfair that he struggles with aspects of his life that many people take for granted. That I take for granted. Because he was one of two million where something went askew in his brain development, he can’t live a “normal” life. He will battle autism’s clutches for the rest of his life, and though they may loosen, they will never leave. And I can do nothing except watch.
In a documentary titled Autism in Love, the father of a daughter with autism said, “We all evidently come equipped with social antenna that we don’t even realize we have. We know instinctively when we’re getting too close to somebody, or pushing someone farther than they want to be pushed, or being too bossy and controlling. [People with autism] don’t have the antenna, and the absence is very challenging.”
People with autism don’t try to be rude, annoying, or “in your bubble.” They don’t mean to babble about something that isn’t related to what you’re talking about or stand or sit too close to you to make you feel uncomfortable. Autism creates a barrier between them and understanding the complexities of friendships and social norms—a wall they can’t break through. Some people with autism, like Eddie, are aware of this wall between them and “normal.” The barrier forever frustrates Eddie. He tries to get on the other side, perpetuating over the smallest of things in hopes he will become a part of the social scene he sees all around him, yet many times he is left stuck. I want to help Eddie build friendships, but I’m trapped on the other side of the wall, unable to reach him and give him the social life he craves.
This challenge can make weekends hard. For me, Fridays and Saturdays mean wandering around with friends, getting food, playing cards, hanging out—a time to unwind. But, for Eddie, weekends mean sitting around at home, seeing posts on social media of his classmates together while he has no plans, no invites anywhere. Sometimes, when I have plans to go out with friends on weekend nights, Eddie asks me what I’m doing or where I’m going. I always hesitate. I don’t want him to think he’s missing out on something. To ease his nerves, I downplay plans I have, with a “nothing too exciting” or a “just sitting around at someone’s house.”
He’ll usually reply, “Ah…um…hmmm…ummm…I don’t know my plans for tonight.” A lump forms in my throat when I see the anxiety in his eyes. He knows that “normal” kids go out to see their friends—they don’t sit at home by themselves, what Eddie does almost every weekend. My stomach twists in knots. This conversation between us has become typical.
Seconds later, my ride pulls into the driveway. Eddie trots away, his attention shifting to his phone. A pang of guilt hits me. As Eddie stays home for the umpteenth weekend, I go out with my friends. My parents tell me I shouldn’t feel bad for being with my friends, but how can I not feel guilty when the social life he wants so badly is something I take for granted?
Most nights when I’m trying to fall asleep, I’ll hear Eddie laughing at something on his phone. His head rests on his pillow directly behind me on the other side of the wall. Sometimes I think about how next year when I’m away at college, I won’t hear him giggling late at night. It’ll be quiet when I’m doing homework, free of cheers. There will be no piano playing throughout the day. These “Eddie things” that I have grown so used to will suddenly vanish, and I’m not ready for the absence.
I wonder how Eddie will adjust to me not being around next year. He’s already voiced concern about how I’m not going to be with him and my family for part of spring break—he is not a fan of change. And next year won’t just be five days; it’ll be months. Next year, he’s not going to have me to take him to the state swim meet and find his wallet when he loses it. He’s not going to have me to bring him to football and basketball games when no one else has invited him. He’s not going to have me to help him ask girls to dances and take him out for ice cream with my boyfriend when he has no other plans. And that terrifies me. It terrifies me because Eddie and I don’t know a life without the other being in it, a life where he can be independent from me.
Most nights when I’m trying to fall asleep, I hear Eddie humming from the other side of the wall, talking to himself about something that happened at school or practice or somewhere. He’ll laugh, replaying a scene in his mind from the day. I lay on the other side of the wall worried because I don’t know what he will do on Friday and Saturday nights in the future. I know he likes getting dinner with me or going to the HC vs. LT games with me, but he wants so much more than to occasionally hang out with his big sister on weekends. He craves places to be—people to see. But I can’t make friends for him. I can’t force people to make plans with him or include him. So what’s going to happen when I’m away next year and he doesn’t have at least me to be with? I’m scared of the reality.
What’s scarier is his future. One night, my parents were talking about Eddie’s life after high school, saying “maybe this” or “maybe that.” I said he would go to college for music. My parents weren’t so sure. They don’t know if he would be able to live on his own and take care of himself along with staying on top of schoolwork. He already has trouble with these things surrounded by people constantly helping and reminding him. They don’t know if there are programs that could accommodate Eddie’s specific needs. Yet, Eddie is sure he will go away to college, just like everybody else. I imagine my parents telling him that he can’t go away to college like his classmates, that he might have an alternative plan, and the confusion and sadness that would consume him brings me to tears.
Most nights when I’m trying to fall asleep, I hear Eddie bouncing up and down in his bed. The conversation with my parents is on my mind. I desperately hope that we find something that will make Eddie happy with his future, some opportunity for him to go to college in some form and pursue music. The uncertainty of this makes me uneasy because when it comes to helping him, I am even more powerless. I want to give Eddie everything he yearns for—friends, college, a “normal” future. But, reality is harsh, and instead, I lay on the other side of the wall without answers as he happily hums, aware yet so unaware.
Works Cited
Autism in Love. Dir. Matt Fuller. PBS, 2016. Film.
"Autism Spectrum Disorder Fact Sheet." National Institute of Neurological Disorders and Stroke. National Institutes of Health, n.d. Web. 24 Feb. 2016.
"Life as an Autism Sibling." Organization for Autism Research. Organization for Autism Research, n.d. Web. 15 Mar. 2016.
"What Is Autism?" Autism Speaks. Autism Speaks, n.d. Web. 28 Feb. 2016.
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with complex health conditions and developmental disabilities. All images are found on Google images and are solely used for educational purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
By Katie Grant
From my bedroom, I hear him running up the two steps at the base of the staircase as I try to focus on the math worksheet in front of me. He hums as he hops up and down on the landing. I stare at the worksheet, willing myself to remember the formula I need to use as he talks to himself and practices the cheer, chanting—“Let’s go devils! Gooooo!” The boys state swim meet is tomorrow, which calls for countless run-throughs of cheers. After he chants, he runs back down the steps--thump thump--continuing to hum. He takes a lap around the family room and is back at the base of the stairs, shouting “Go! Go! Go!”
Five minutes later and I’ve only completed one problem. He continues to run up and down the steps. Please stop running. My thoughts do nothing to diminish his energy. That’s it. He doesn’t stop bouncing around until I tell him to sit down. Eddie, my fifteen-year-old-and-not-so-little-anymore-brother, never stops moving.
At the state swim meet the next day, I find Eddie pacing by my friend at the concessions stand. He is picking at his hands; one of his many stress habits. My friend tells me Eddie has lost his wallet. I ask Eddie where his wallet could have gone, throwing my hands up in exasperation. He stares at me with anxiety in his eyes and clasps his hands together while he shifts his weight back and forth on the balls of his feet. “Uhhhh” is the only response I get. As I’m about to question him more, my friend steps in. He tells me someone at the athletic office will help us find the wallet.
I thank him and march toward the athletic office with Eddie in tow. I find a staff member and tell him the situation, and we walk toward the gym. He asks Eddie about the last time he had the wallet and where he was sitting in the gym earlier that day, but these are questions Eddie cannot answer. After a few “ummms” and a “well, I’m not sure,” Eddie wanders away and paces around the gym, voicing his worries about missing the 100 butterfly race. The staff member looks at him with confusion in his eyes, and my protective instinct kicks in. He asks me if Eddie is okay. This is my cue. I explain that he has high-functioning autism, that he loses things regularly, that he can get very anxious—a rehearsed speech I have given more times than I can remember.
Eddie continues to pace, mumbling about missing the race—I brainstorm where the wallet could be. He doesn’t seem to care that he has lost forty dollars, but I know that if I don’t find it, I will be victim to him freaking out the entire ride home. It’s my job to help him.
A few minutes later, my friend texts me that they found the wallet. Relief washes over me as I tell the staff member and Eddie.
“Great! So I can go back to the meet now?” Eddie asks over his shoulder, heading back to the natatorium.
“Yes,” I sigh.
On the outside, Eddie looks like a typical teenage boy. About 5’8’’, skinny, big blue eyes, light brown hair, Irish skin. He is a replica of my dad—put their pictures from high school together and the resemblance is uncanny. Someone who doesn’t know Eddie wouldn’t know anything is different about him just from looking at a picture.
On the inside, Eddie is made up of frayed nerve endings that impair his social, cognitive, and motor skills. He sometimes has trouble articulating what he wants to say, has a hard time holding conversations, struggles with school, and is always moving. He was diagnosed with high-functioning autism when he was two years old.
Autism, by definition, is a group of complex disorders of brain development, characterized in varying degrees by social interaction, verbal and nonverbal communication, and repetitive behaviors. Because Eddie is high-functioning, he can be in regular gym class and not the Adaptive P.E. class. He can sit in a regular classroom. He can tie his shoes, take showers, make a hot dog in the microwave, and go on bike rides to Western Springs. He can handle being at a concert or Blackhawks game. He can go on long road trips to Florida and plane rides to London. He can do his homework, with assistance from my parents. He can talk fluently, have conversations, and express his feelings, though limitedly. He can swim on a club team and the high school team. He can be a part of the marching band.
Like a typical teenager, Eddie loves his iPhone and usually has his headphones in, listening to heavy rap music or watching a swim race. He spends a copious amount of time scrolling through social media and memorizing directions to various places. He is a bottomless pit when he eats. He embodies the teenage boy wardrobe—Under Armour, Adidas, Nike, Chicago teams, his favorite college teams. He is exceptionally gifted in music—Eddie plays the piano, drums, and will be in Wind Ensemble, the highest band at Central, next year playing percussion.
From an outsider’s perspective, Eddie seems very capable of living like a normal person would. However, his disorder still creeps into his everyday life. The biggest things Eddie struggles with are communicating his feelings and ideas, understanding abstract concepts, and forming relationships with people. These challenges make friendships and a social life very difficult, especially for people with autism who are aware they’re different from others, like Eddie.
Autism is a complex gray area that does not have black-and-white answers on how one with it can perform in school, the workplace, social situations, and everyday life. Autism leaves my family and me with too many question marks and not enough conclusions on helping and improving Eddie’s life. Autism throws curve balls that my family and I are not ready to hit, that leave us striking out at the plate as Eddie grows up. Autism is hard.
Over the years, my relationship with Eddie has grown. When we were younger, we played Lego Star Wars, Super Mario Brothers, Mario Kart, and other Wii games together. He didn’t have much interest in playing games like House or Pirate Ship—imagination is not his strong point. Since he started high school, our bond has strengthened. Perhaps it’s because we spend more time together being at the same school and swimming. We go to each other’s meets. He comes to my water polo games; I go to his band concerts. We talk on the car rides to and from school—he’ll ask me how my day was or how my practice was, and I will do the same. We’ll talk about some new social media trend, or he’ll tell me about a swimmer breaking a national record. I ask most of the questions, and he usually gives me answers in bits and pieces. Sometimes, we crank the volume and sing along to the radio; he loves that. I’m thankful for those drives with him where all I have to worry about is making sure we have a good song to sing along to.
I try to help Eddie by being there for him. When he performed a remarkable xylophone solo in eighth grade and when he dropped time in all of his events at the JV Invite swim meet his freshman and sophomore year, I was there clapping for him. When he needed someone to make a poster so he could ask a girl to Homecoming, I was there with markers. When he lost his wallet, I was there to find it. I try to do all I can for him because I can’t help him when he’s questioning why he has no one to hang out with on the weekends. I can’t help him when he’s annoyed that he has to be in the Special Education English class. I can’t help him when he gets looks from people because he flaps his hands and crosses his eyes in public. I can’t help him when he sees his classmates getting their licenses on their sixteenth birthdays but he won’t be able to because he had to wait and get evaluated to see if he would even be eligible to drive.
Most of all, I can’t help Eddie be the “normal” he desperately wants, and that breaks my heart. It kills me that I can’t give him the “normal” that I am, what he would give anything to be, what he was born without and will never have. I wish I could help him explain how he’s feeling or speak what’s on his mind. I want him to know how to express empathy and maintain a friendship. It’s unfair that he struggles with aspects of his life that many people take for granted. That I take for granted. Because he was one of two million where something went askew in his brain development, he can’t live a “normal” life. He will battle autism’s clutches for the rest of his life, and though they may loosen, they will never leave. And I can do nothing except watch.
In a documentary titled Autism in Love, the father of a daughter with autism said, “We all evidently come equipped with social antenna that we don’t even realize we have. We know instinctively when we’re getting too close to somebody, or pushing someone farther than they want to be pushed, or being too bossy and controlling. [People with autism] don’t have the antenna, and the absence is very challenging.”
People with autism don’t try to be rude, annoying, or “in your bubble.” They don’t mean to babble about something that isn’t related to what you’re talking about or stand or sit too close to you to make you feel uncomfortable. Autism creates a barrier between them and understanding the complexities of friendships and social norms—a wall they can’t break through. Some people with autism, like Eddie, are aware of this wall between them and “normal.” The barrier forever frustrates Eddie. He tries to get on the other side, perpetuating over the smallest of things in hopes he will become a part of the social scene he sees all around him, yet many times he is left stuck. I want to help Eddie build friendships, but I’m trapped on the other side of the wall, unable to reach him and give him the social life he craves.
This challenge can make weekends hard. For me, Fridays and Saturdays mean wandering around with friends, getting food, playing cards, hanging out—a time to unwind. But, for Eddie, weekends mean sitting around at home, seeing posts on social media of his classmates together while he has no plans, no invites anywhere. Sometimes, when I have plans to go out with friends on weekend nights, Eddie asks me what I’m doing or where I’m going. I always hesitate. I don’t want him to think he’s missing out on something. To ease his nerves, I downplay plans I have, with a “nothing too exciting” or a “just sitting around at someone’s house.”
He’ll usually reply, “Ah…um…hmmm…ummm…I don’t know my plans for tonight.” A lump forms in my throat when I see the anxiety in his eyes. He knows that “normal” kids go out to see their friends—they don’t sit at home by themselves, what Eddie does almost every weekend. My stomach twists in knots. This conversation between us has become typical.
Seconds later, my ride pulls into the driveway. Eddie trots away, his attention shifting to his phone. A pang of guilt hits me. As Eddie stays home for the umpteenth weekend, I go out with my friends. My parents tell me I shouldn’t feel bad for being with my friends, but how can I not feel guilty when the social life he wants so badly is something I take for granted?
Most nights when I’m trying to fall asleep, I’ll hear Eddie laughing at something on his phone. His head rests on his pillow directly behind me on the other side of the wall. Sometimes I think about how next year when I’m away at college, I won’t hear him giggling late at night. It’ll be quiet when I’m doing homework, free of cheers. There will be no piano playing throughout the day. These “Eddie things” that I have grown so used to will suddenly vanish, and I’m not ready for the absence.
I wonder how Eddie will adjust to me not being around next year. He’s already voiced concern about how I’m not going to be with him and my family for part of spring break—he is not a fan of change. And next year won’t just be five days; it’ll be months. Next year, he’s not going to have me to take him to the state swim meet and find his wallet when he loses it. He’s not going to have me to bring him to football and basketball games when no one else has invited him. He’s not going to have me to help him ask girls to dances and take him out for ice cream with my boyfriend when he has no other plans. And that terrifies me. It terrifies me because Eddie and I don’t know a life without the other being in it, a life where he can be independent from me.
Most nights when I’m trying to fall asleep, I hear Eddie humming from the other side of the wall, talking to himself about something that happened at school or practice or somewhere. He’ll laugh, replaying a scene in his mind from the day. I lay on the other side of the wall worried because I don’t know what he will do on Friday and Saturday nights in the future. I know he likes getting dinner with me or going to the HC vs. LT games with me, but he wants so much more than to occasionally hang out with his big sister on weekends. He craves places to be—people to see. But I can’t make friends for him. I can’t force people to make plans with him or include him. So what’s going to happen when I’m away next year and he doesn’t have at least me to be with? I’m scared of the reality.
What’s scarier is his future. One night, my parents were talking about Eddie’s life after high school, saying “maybe this” or “maybe that.” I said he would go to college for music. My parents weren’t so sure. They don’t know if he would be able to live on his own and take care of himself along with staying on top of schoolwork. He already has trouble with these things surrounded by people constantly helping and reminding him. They don’t know if there are programs that could accommodate Eddie’s specific needs. Yet, Eddie is sure he will go away to college, just like everybody else. I imagine my parents telling him that he can’t go away to college like his classmates, that he might have an alternative plan, and the confusion and sadness that would consume him brings me to tears.
Most nights when I’m trying to fall asleep, I hear Eddie bouncing up and down in his bed. The conversation with my parents is on my mind. I desperately hope that we find something that will make Eddie happy with his future, some opportunity for him to go to college in some form and pursue music. The uncertainty of this makes me uneasy because when it comes to helping him, I am even more powerless. I want to give Eddie everything he yearns for—friends, college, a “normal” future. But, reality is harsh, and instead, I lay on the other side of the wall without answers as he happily hums, aware yet so unaware.
Works Cited
Autism in Love. Dir. Matt Fuller. PBS, 2016. Film.
"Autism Spectrum Disorder Fact Sheet." National Institute of Neurological Disorders and Stroke. National Institutes of Health, n.d. Web. 24 Feb. 2016.
"Life as an Autism Sibling." Organization for Autism Research. Organization for Autism Research, n.d. Web. 15 Mar. 2016.
"What Is Autism?" Autism Speaks. Autism Speaks, n.d. Web. 28 Feb. 2016.
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with complex health conditions and developmental disabilities. All images are found on Google images and are solely used for educational purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.