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I don’t remember ever learning what it was. I don’t remember ever being told the definition. I had just always known that my brother has autism. If you asked me today, I still could not define autism for you. My definition is based off my experience with it, which is extremely different than other people’s experiences. I could say it’s a personality disorder where one cannot speak, learn, or interact with other people easily, but that’s just based off what I see in my brother. There are thousands of cases of autism out there, and each one is unique.
My earliest memories have autism incorporated into them. I remember lying stretched out on the couch at 6am every morning. My brother always sat in the big arm chair across the room from me. Barney the Dinosaur would be blasting on the television and I would be holding the remote. About every five minutes or so Brennen would unexpectedly hop up out of his chair and sprint towards the television. He would then begin to smack the television over and over. This was my cue. I hit the stop button and sat waiting for him to sit down again. When he finally did, I could press play again. That was always my morning chore of the day and at three years old I knew it well. His teachers trained me with these tedious training techniques that would “help him get better.” They never actually worked.
As a child, from seven in the morning to nine at night we rarely had an empty house. There were always teachers, aids, and doctors filtering through and observing. I got to know them all pretty well, and I loved being a part of their experiments.
“Go tap him on the shoulder and see what he does Maggie,” they would request.
I always did so willingly but the results were always the same. He completely ignored me and kept doing whatever he was focused in on. He never payed the slightest attention to my existence.
I knew I was an important resource, though. Brennen was getting new teachers all the time (most people find the job pretty depressing and boring so don’t stick around). The teachers never knew Brennen well enough to know what he wanted, but I did. I knew that certain sounds he made meant certain emotions. He has his own little language, like baby talk, and he makes noises to himself all the time. I know if his noises have a lot of “m” sounds, then he’s usually mad. A lot of “e” sounds is happy. I know that if he pushes his hands outward, then he needs some space. If he points behind him, then he’s hungry. I know what will make him mad and tantrum for hours. I know what snack he eats with each particular movie he watches. His teachers depended on me to tell them what Brennen was trying to say. I was their interpreter.
I share a special bond with my brother, but that doesn’t mean we don’t fight like any other siblings. When I was five, I knew all his OCD habits. I knew I had to have my seatbelt buckled in the car or he went insane, but that day I didn’t want to be buckled in and I didn’t want to be controlled by him. When he started pointing at my seatbelt and began to cry, I felt powerful. I could make my big brother upset over nothing! But then he began to scream and suddenly he shot across my lap, trying to buckle me in. I wouldn’t let him get away with it that easily. I curled into a ball so he couldn’t reach over my lap. Next thing I knew, I felt excruciating pain in my back as his teeth sunk into my skin. I screamed and my dad slammed on the breaks. They were used to my brother screaming, but I never did. I sat up to see my shirt soaked with blood. Of course it healed over time, but I still have the scar today. The doctor said it looked like a dog bite. Nope, that’s just my brother.
My family has always tried to avoid bringing Brennen out in public because he is so unpredictable and impossible to control. Sometimes he has to go out, though, like when I was seven and he was ten and we moved to California. My brother, dad, and I flew together and had made it through the flight fine. We landed and all the passengers filed out. “Time to go Brennen!” we told him, but he stayed glued in his seat. Every time we suggested “Let’s go!” or “Get up Brennen!” he would let out a sharp scream. We didn’t know what to do. The stewardess came over and told us we had to get him off the plane because they were ready to board the next flight. My dad had no choice but to lift him up and carry him down the stairs and onto the runway. Brennen whipped his body in all directions and screamed bloody murder. I followed them off the plane but once onto the runway my dad couldn’t hold him anymore and Brennen fell to the ground. He gashed his elbows and knees open and as he saw the blood everywhere, peed himself. I stood far away now, knowing not to get mixed up in this mess. The stewardess held my hand and had tears in her eyes seeing this pathetic sight. The passengers waiting to board looked shocked that a kid ten year old would do something as crazy as this. No, he is not some spoiled kid throwing a tantrum over not getting what he wanted. He can’t tell you what the problem is, but in his mind he couldn’t get off that plane. I think we showed everyone a thing or two about autism that day.
So yes, in many ways Brennen has made my life more challenging. He has embarrassed me plenty of times and has made me cry too. He has a had a huge effect on my family. We can’t live where we would like because there are no services for him. We can’t go visit family because he can’t fly anywhere. I feel like I always have babysitting duty and can never go out with friends. My parents almost never let me have friends over either because they worry about people judging him or people being scared of him and his weird behaviors. When I was six and he was nine, Brennen entered a residential care home. It really helped my family because my sister and I received more attention and my family was able to go out together. Brennen comes home every weekend but at least it gives us some freedom. It was really hard at first though, not having my brother in my life. I remember crying for a couple days straight and every time we had to drop him back at his house Sunday night. I felt terrible ditching him at this house full of kids that self injured and were helpless. I did get used to it at some point though and now that’s just how life works, and I am able to appreciate him more when he’s home.
Even now my parents have to struggle to make ends meet because of my brother. It isn’t because my dad and mom don’t have good paying jobs, but because we have to save tons of money for when Brennen turns twenty-two and Shrewsbury stops paying for his care. Still, through the hardships he has brought my family, I am forever grateful to him. He has taught me so much that I could never repay him for.
As a kid I was always known to be mature far beyond my age. I had responsibilities in my brother’s care from age two and also learned a lot from his training. I had a lot more independence than most kids as most of my parent’s attention was required for Brennen.
He taught me a lot about overcoming obstacles as well. Brennen won the Special Olympics gold medal for swimming many times and I had never been more proud of anyone in my life. Just because he might not be good at the things most people consider essential, he still is special in his own ways. There is always something great about everyone, you just have to find it.
I have had problems with other kids with special needs. I babysit for kids with special needs and help their parents out because I can understand their behaviors and are comfortable with them. Often times I get upset or mad though when people tell me they know others with special needs, because when I meet them I see nothing wrong. Of course they have their problems: poor social skills, Aspergers, or maybe they just learn slower. I know they face plenty of challenges, but I guess I just get jealous when I find out that other people with autism can do things that I have always dreamed of for Brennen. Every year for my birthday, I blow out my candles and wish for a cure for autism or just a little help for him. Maybe one day that will happen.