I was supposed to go to the Social Security office today to do some business for brother, but due to circumstances out of my current control I have had to postpone my trip. I’m disappointed I won’t be able to cross it off of my list, but if you’ve ever had to sit in the Social Security office, you understand why I’m not broken hearted or anything.
That being said, I think it’s time I fully introduce you to my brother.
Aaron is my older brother by two years, one week and two days. He’s my only brother. Supposedly we have a half brother who is in his late forties by now, but he cut ties with my mother before she passed, and I have not been successful in tracking him down.
Aaron has what was known as high functioning autism when he was diagnosed at the age of four. Remember, I’m two years younger so I don’t recall any of the events that lead up to his diagnosis. What I do know was information told by mainly my mother. Our parents split up when I was four myself and Dad never talked about anything regarding Aaron’s diagnosis. I can’t say that his diagnosis would be the same today as it was thirty years ago, but high functioning autism is what he has.
Aaron had the “classic” signs of autism from what was told to me. He started out developing normally and regressed; he stopped speaking. I know he started talking again at the age of four and developed echolialia, but I don’t know if this was before or after the diagnosis. He struggled to make eye contact, and did repetitive things for comfort. And he was basically a robot in the emotion department.
I’ve done some research on autism to better understand a little better how my brothers mind works. But most of what I know is just through growing up and living with him.
Aaron hates change. He can’t sleep away from home, and if he does he doesn’t sleep well. My mom used to say that he would get physically ill if forced to sleep away from home – right down to a fever. We led a very structured life once we began living with dad. Every thing happened at the same time every day. Very rarely did we deviate from routine. I know now that this was to help my brother. Mom wasn’t very structured. That’s another story how Dad gained custody of us, but I believe whole heartedly that him getting custody was the best thing for my brother and me.
So. Back to the diagnosis. And this is very important. By the end of this story you will see why.
My parents were told three things. 1. Aaron would never graduate high school. 2. Aaron would never show emotion. 3. Aaron would always need to be under their direct care – living with one of them until they died. His fate was uncertain should they die at an early age. He could go into a care facility or be cared for by other family, but he would never live on his own.
I don’t remember ever being told that my brother was autistic. I’ve always just known.
We were close from an early age. My mother was an alcoholic and constantly partying. We were told to “just go play” a lot. Wherever he went I went and wherever I went he went. I remember not being able to be friends with some girl I met at school because she didn’t want Aaron at her house because he was ‘weird.’. “If he can’t go, you can’t go.” Even though I technically have an older brother, it was instilled in me at an early age that I was to keep an eye on him. And to this day people think I’m the older sibling. I accepted my role as the caregiver and never saw reason to really relinquish it.
We lived in a multi story apartment building to start. It caught on fire and burned down when I was about four and a half. The fire started in Aaron’s room, something electrical while he was at school. I remember mom saying that if Aaron had been home he would have likely died. I cried and cried at the thought.
I know that when Aaron gets fascinated by something, it becomes an obsession, and this started at an early age. First it was the toilet. He would just stand there and flush it and watch it go down, and then flush it again and again and again. As he got older the obsessions suited his age fairly well. He’s always been an artist of sorts. Anything he was fascinated with he would draw. There were keys, and lighters, and different video games, and of course girls when puberty hit. Some if his obsessions sparked trouble. During his fascination with keys, someone gave him a set of skeleton keys that he used to unlock a local insurance agencies door while they were closed. I was maybe five. I remember playing with their Christmas decorations. Because like I said, wherever he went, I went and where ever I went, he went. So if he got into some nonsense, so did I.
I remember sitting in a parked car at night listening to music with him. Later I was told that it was a neighbors car and we ran their battery down. They tried to sue our parents I guess. I remember playing with the hose in the middle of winter with him. I remember him trying to climb out on the roof of our first place and slamming the window on his feet because he wouldn’t listen to me. I remember painting our front porch fire engine red with him, and the ass beating I got when my mom woke up and saw what we had done. I was in charge, so only I got the ass beating. Anytime there was trouble. Facts are, while I was supposed to be ‘in charge’ of my older brother with special needs while my mom slept off her hangover or got drunk with her friends, I was only 4 or 5. And many times she would send him to a special needs daycare to get a break. Maybe those facts alone can explain to you why my father getting custody was for the best. Unfortunately that story is much more complicated.
One may think that all of this would make me bitter and resent my brother. Especially because now both of our parents are gone and he is in a sense my responsibility while I also juggle being a single parent and work full time and try to keep a semblance of a social life as well. But I’m not bitter and I certainly don’t resent him.
See, my brother is my hero. And he is a large part of why I am still living and breathing, and why I get up every day and make the best of it. He hasn’t ever literally saved my life. But if you count how many times he’s saved my life in the figurative sense, you’d lose track.
So we got through living with mom and went to live with dad. I was six, Aaron was eight. I remember getting to the new school and some asshole kids were making fun of Aaron’s stutter. I was very slightly built for a six year old. I’ve always been short and back then I was considered petite. But I had no problem walking up to those older kids and telling them to leave my brother alone or they’d be sorry. And I mean, mostly people believed my veiled threats. From that day forward I can count on one hand how many times I’ve had to confront a bully on Aaron’s behalf during our school years. It was a small town, meaning small schools, and word traveled fast. That little girl would have faced an army for her brother, and I think it was evident to anyone who dared cross me about him. No one tested my words. I haven’t had to stick up for him as much as an adult, but the few times I have had to resulted in the same fashion. I have never had to get into a physical fight. My words alone were enough to put people into their place and make them walk away. As we got older my friends became his friends, so my eyes were everywhere. No one fucked with my brother without me knowing about it. And a few times my friends took care of the idiot doing the bullying for me. Those people hold a special place in my heart, I will tell you that.
Dad took care of us more than mom was capable of, but he too was plagued with alcoholism and various other addictions, and so while my burden was less after we moved with dad, I still felt “in charge” of my brother. I felt guilty for going with friends without him, even though dad assured me it was okay. Aaron was a grade ahead of me in school and those transitions between elementary and middle and high school were rough on me.
And yes – Aaron went to regular school. He had a teacher’s aide and an IEP, but he went to regular school. And soon funding for the teachers aide was gone and he didn’t have that even. He was reliant on the patience of my father and his regular teachers to teach him. Aaron didn’t like school. A key thing that is important about autistic people is they are very bright – If there’s an interest in the subject. School held no interest for Aaron. With exception to art class and the few technology based classes our small town school offered, Aaron hated every minute of school. Meanwhile I excelled. I hope that Aaron never felt that I was smarter than him, because that wasn’t it at all. I could never draw a picture and building things is beyond me. We’re just smart in different ways. I have read a couple different articles where special needs siblings felt inferior to their quote unquote regular siblings. Never in life. If anything it’s the other way around.
Aaron and I grew up in the midst of disfunction, that much I have made clear. Somehow, despite dad’s addictions he managed to raise us well and meet Aaron’s needs and help him through school. We remained close always, and his every achievement was celebrated.
Aaron never got in trouble in school, and maintained a C average through high school, which is more than what some can say.
Let’s go ahead and just skip to the inspirational part, shall we?
The week before Aaron graduated high school, dad got a call from the school. He needed to come pick Aaron up. I got a heads up that Aaron wouldn’t be on the bus but that he was okay. Filled with curiosity through the rest if the school day and the entire torturous bus ride home, I rushed up our driveway and into the house. Dad sat in his usual spot on the couch, cigarette in hand, beer in front of him, watching the news.
“Where’s Aaron?” I immediately asked, not even greeting dad or giving him a chance to ask about my day.
“In his room.” Normally in warm weather Aaron was out in the shed, tinkering with this or that.
“Why. . .?”
Dad turned and smirked at me. “He got suspended for three days from school.”
Shocked, my mouth fell open in disbelief. “What?! Why?!” I felt like I had failed somewhere in my protective role, especially because I had no idea what had happened.
And then dad was grinning ear to ear. I just stared at him dumbfounded at his obvious happiness. And then he started laughing, so hard he couldn’t talk. I sat down in the recliner and tried to be patient while dad had his laugh. Finally I couldn’t take it anymore. “Well?! Are you gonna tell me or just laugh like a lunatic?!” Wiping tears of laughter from his eyes, dad finally regained his composure.
“For public display,” and he stopped to laugh again, “for public display of affection. He got caught kissing a girl in the hall.” And then dad was rolling again, and if I had known the phrase “what in the actual fuck” back then I probably would have said it. Instead I began to laugh too. “The week before he is supposed to graduate from high school, and the boy gets kicked out for kissing a girl in the hall. The kid who was never supposed to show emotion or graduate high school! I can’t even punish him. I’m not even mad. I just told him to go hang in his room for the night.”
So that’s how Aaron officially checked two of the three things off of the doctors “he’ll never” list.
Now, Aaron had long since proven the no emotion thing could be overcome. I’ll never forget a particular instance several years before that. We were sitting in my room. I had taken up crocheting, and my needles were on my bedside table. I was about 13, making him 15. Something made him think it a good idea to take a particularly fine pointed one and stick it underneath me as I sat down. It promptly went through my jeans and into my upper thigh, making an audible popping noise as it went through the material and into my flesh. I stood up and yelled, the golden colored needle sticking out of my leg. “GET IT OUT, GET IT OUT!!!” I screamed. Aaron gingerly pulled it out of my leg, the instrument covered in blood. I was crying but didn’t want to get Aaron in trouble because I knew he didn’t mean to stab me. I quietly went into the bathroom to clean the puncture wound how Dad had taught me, intent on not saying a word unless it became a problem to take care of.
I finished cleaning it, and went back into my room to let Aaron know that it wasn’t that bad and that I was okay. He wasn’t there. I went then to his room. Also not there. I wandered into the living room to find my six foot tall fifteen year old brother sobbing, being held by my dad. I instantly started to cry again, out of compassion for how horrible my brother must feel. I assured him I was okay and that I wasn’t mad.
My point is, my brothers autism was not a set in stone thing. The doctor made his diagnosis, and told my parents what to expect. But the doctor had no idea what an extraordinary being my brother was and is.
So my brother graduated high school. And I cried like a baby during his ceremony. I must have been the proudest sister in the world that day. Despite everything – the diagnosis, our rocky upbringing, everything – my big brother was graduating.
The third and final thing that the doctor said Aaron would never do is live on his own.
Let’s explore that a little.
Shortly after Aaron graduated, dad and I got into a huge fight, resulting in me deciding to move out. I went and stayed with my boyfriend – the one mentioned in You have to start somewhere. And as I thought about the decision I was making to leave Dads, I realized the hardest part was that I hated to leave my brother behind. I cried for hours over the decision. We had never spent any great length of time away from each other in the 18 years I had been alive. A night here or there, but that was it. So when I told him I was leaving, I cried. And my supposed to be emotionless brother teared up too, and hugged me and told me it was okay, he’d be okay, that I had to do what I had to do. Not only did he show emotion that day, he showed selflessness. That doctor couldn’t have been further off the mark than what he was.
As I was making my way into the world of adulthood, Aaron was never far from my mind. I made a point to take him to the movies occasionally, and after I had Matt and got on my feet, I would go and pick Aaron up to come hang out with me at my apartment in Toledo. It was Aaron with me when I had my first car accident, the first time I got stitches. . .
And it was Aaron who called to tell me when first our mom died, and then our dad.
Our mothers death didn’t effect him too much. Both of us had grown detached due to her never ending battle with alcoholism. She was in and out of the hospital with alcoholism related illnesses, and as the disease progressed, her mental state got worse and worse. I missed my mother long before alcoholism took her body from the earth. And I think Aaron felt the same. He once asked me if he was a bad person for not being sad about mom dying. We were on the phone, and he called me after dad had gone to bed so we could have a private conversation. I held back tears as I reassured him he indeed was not a bad person. I explained it was in part because of his autism, and in part because of how she was to be around in her last years. And I told him I was envious of his detachment. I wished I could feel nothing. My mother’s passing is one I will never find peace with. Another story, another time, folks.
Dad’s passing was much harder on both of us.
Dad actually kicked his habits, and aside from some prescription marijuana and cigarettes, he lived the last five years of his life clean. But the damage had been done, and he was a very sick man. I was here in Toledo raising my kids. Roughly once a year I took dad to the hospital to he admitted for pneumonia, and while he was there I made sure that bills were paid and Aaron was set. Aaron stayed at the house by himself, with me coming in to give him money to shop should he need it. As dad got more ill, we discussed what would happen with Aaron once he was gone. He asked me if I would take care of Aaron’s finances and help Aaron through life allowing him to live with me should it be necessary. Of course I said yes. He taught me how to handle social security, and taught me the ins and outs of the system.
In the meantime Aaron cared for dad’s physical needs. He took care of the house and yard, made sure dad’s oxygen machine stayed up and running, and helped dad on his bad days to the kitchen and bathroom. I wish I could have been more of a physical help, but I helped as much as I could from where I was, and making trips home when needed.
From the time my phone rang at 6am on March 3rd, 2015 until I crawled into bed well after 2am on March 4th, it is simultaneously a blur and in hyper focus. There are moments I don’t remember, and there are moments I wish I could forget. Someday I will write it. For now we’ll concentrate on Aaron’s side.
What I can tell you of Aaron’s perspective is it was Aaron who found him, Aaron who sat with his body waiting during an ice storm for authorities. Aaron. Who called 911 and took instructions from the operator to try and resesitate my dad. Aaron who called me begging me to tell him what to do.
And I honestly believe of it weren’t for knowing my brother was all alone in that house with my dad’s body, my poor brother having to bear that alone, I would have curled up and died myself, knowing my dad was no longer here to guide me. But the knowledge that my brother needed me drove me to get moving and get to him as fast as possible, to help take that burden from him. In an ice storm the process did not go fast enough for me, but with my cousins help I made it to him. And immediately my now six foot five brother had his arms around me and in a choked voice said “did I do the right things Amber? Did I do okay?” I wanted to scream at the top of my lungs how goddamn unfair it was that my brother had to go through this. Instead I hugged him tight and reassured him that dad woulda been proud of him, he’d done everything perfect.
So we faced life, orphans even though we were grown. That’s what it felt like for me, and I’m sure Aaron felt the same. As we stood first at the funeral, I felt my brothers big hand wrap around mine and squeeze. “We can do this,” he murmured to me quietly, and I squeezed back. Yes brother, we can I thought as I fought for control of my tears. The hardest moments of my life were when they handed my brother the folded flag in honor of my dad’s service in the military, and I saw tears stand unshed in his eyes. Even harder was the gun salute as we sat together in that cold cemetery, honoring my father but tearing into my soul as I felt my brother jump and resist the urge to cover his ears, as the shots fired off. I felt them tear into my heart and seemingly stop it’s beating as I gripped my brothers hand, not only for comfort to him, but to strengthen myself. And I damn near lost my sanity when my brother whispered goodbye to dad as we pulled out of the cemetery.
But soon we were faced with another problem: Aaron was being forced to move. I kept tabs on him for a month, seeing how he kept up the yard and the house, his groceries, etc. And we talked about what he wanted to do. He didn’t want to come to Toledo, and the only other option was to have him move with my grandparents. He also didn’t want to do that. So we decided to find somewhere that offered a short term lease, and have him try moving into his own place. Cleaning out and packing the trailer was insane, as my dad was a packrat. Nearly fifteen years of accumulation, nicotine and dust covered every surface, and we were trying to do the majority of it on our own. Aaron didn’t complain once. He continually asked me if I was doing okay as I paused over pictures and little notes in dad’s handwriting. We moved furniture and boxes, went through closets and drawers, divided up sentimental items and loaded up new boxed items into the truck. . . dad had been stocking up on new home items, presumably for this day. Dishes and cookware, linens. . . Dad sure made sure we were taken care of, even in his absence.
It’s been a little over two years since Aaron moved out on his own. And I have to say, other than a nasty toilet on occasion, he’s doing amazing. I handle his finances, and have been teaching him how to cook over the phone, and otherwise guiding him through adulting. I made a trip there to teach him how to use the machines at the laundromat, and help him clean now and again. He comes here too. Because see, Aaron didn’t just exceed the docs expectations, he blew them out of the fucking water. Aaron drives. He even has his forklift operator license. He can fix anything that has an engine. He cooks good meals for himself, and has held the same job since high school.
And he tells his little sister he loves her everytime we talk.
Fuck the expectations. That’s what my brothers life is a testament to. You can do whatever you set your mind to, no matter how the cards are stacked against you, no matter the odds.
Do you see why the man is my hero? I could only hope to be as amazing and extraordinary as he is. And I am honored, not burdened, to have been chosen to help guide him through life. And I couldn’t be prouder of him. There’s a saying that those who love someone with autism say often: “I wouldn’t change you for the world. But I would change the world for you.” The first time I read that, I rejoiced that someone else had put all of my feelings about my brother into words for me. Because nothing on earth would make me wish my brother didn’t have autism. I just wish the world had been a little easier on him is all.
My brother, my hero.