Our Disabled Memoirs

A 12 Year Foreword and Re-edit

Foreword

I didn’t think this would EVER be something I shared, particularly with the faceless and infinite internet (also, a pretty cruel one). So far, though, I’m so happy I shared everything else with you, and I can’t imagine that ever changing. This story is really the birth of what I hope to be my vulnerable and ever-growing soul, that my friends know today, that I am always trying to know better for tomorrow.

This was an assignment for my first creative writing class my freshman year, when we were asked to write about a moment that changed our lives- a memoir.

I had never reflected on my life like that before; I actually had a very difficult time in general just thinking of what my life had been like up until 14 years old. It was a purposeful and accidental blur, all at once. Except for Johnny.

I remember I had started the story with, “My mom always had high expectations of all of us.” That was later cut in the editing for the literary magazine, because I’m sure it had felt pretty irrelevant to the story- even my creative writing teacher might’ve made a note about it wondering if that tidbit had a place. In a subconscious way, for me it certainly did. My mom orchestrated our lives and parts we had no control over, like when the decision was made for Johnny to live in the Philippines. I had also grown to realize how much her own shame over the situation affected me, and my sister, and of course her- how life was a tragedy years before and after he left. Or if I was honest, it was more like he was given away.

Up until maybe three years ago, I couldn’t get through the song “Maybe” from Annie, because I would burst into what I now know to be just this ugly, ungodly, full fledged panic attack.

So I wrote this story for a grade, because there was no other way I would know how to wrestle this out of me. Pouring it onto the page was so- disconnected. It took me no time at all. I was emotionless getting through it. I wasn’t even present, really, at the computer when I wrote it. Now I know why, but back then I didn’t even know how to ask myself the question of, “Why didn’t I feel anything?”
Of course though, the moments I wrote about were so clear. They changed me. Watching Johnny being brought home by cops, finding him in someone’s car in the middle of the night. My moms tears hitting the couch when she gave us our passports. Completely vivid, and they hurt. Hearing “Maybe” hurt. I was so done with hurting.
Ms. Deferrari told me she wanted to nominate this memoir for the literary magazine. And I just was caught in this chaotic wave of,
“I’m going to get into so much trouble. Mom’s going to kill me. Everyone’s going to think I’m making this up. For attention. I am such a dramatic bitch for exploiting my brother. Am I exploiting my brother? Holy SHIT i might just be the worst person alive”
I tried to reason with her to keep it anonymous.
But I was swayed. Her biggest reason that she gave me was because of college, but I think even then I realize I probably wasn’t going to use this to impress colleges (mainly because I didn’t think I was going to go.)
It was a sheepish yes, under the guise of “well, college.” But, I think I really did want people to know. At the time I didn’t know why, but now I look back at that girl, and she was so alone. She was begging for someone to understand her and hear her.

The story was published in the school’s magazine, and towards the end of the semester, I read it for the class. We could’ve read any of our works, but I really was embarrassed by the rest of them. I rarely gravitated to romantic or fiction styles of writing because I felt I was always so, cheesy. And it just wasn’t real. I don’t even read much romance anymore, and barely any fiction. I thought I would be okay to read this since I was already so distanced when I began writing it.
I was so wrong.
I read the piece for my best friend, Ashley, in the living room. I was crying. I was hyperventilating. I couldn’t breathe. I couldn’t stop crying. And I thought to myself, how am I going to go up there.

My chest was exploding that day, and then when I was called to go up I went numb for a bit. I went numb up until I said he went silent. I collected myself after choking, and then cried again when I read he was diagnosed. From that point on, it was constant tears.
It ended with the lyrics of Annie, which I couldn’t even begin to read. I cried those ten whole pages and had I tried to read those lyrics, I wouldn’t have been able to breathe. I was so appreciative of my class, and my teacher for listening. I was even more appreciative of the poem “Midnight Snack” that came right after me so that we were picked right back up.
That was the first time I bared myself like that. Instead of having to hide in shame, being made fun of, for wearing the same clothes- for my social awkwardness, hygiene, daydreaming, and just overall, teenage angst weirdness. I think people finally reasoned why. And I was grateful. I started to learn that love is love- meaning that the love can’t be measured, no love is better than another if it’s real love. I felt for the longest time that the love I had for my brother wasn’t enough. And I was able to slowly, through telling these stories, reconnect in some way to him again.

The next time we saw our brother was 11 years later, in 2018. So much had changed. I wish I could elegantly and honestly explain what my heart felt like all of these years building up to seeing him again- it was the most terrifying thing I ever had to face. The moments I imagine passing into death will be, when we look at ourselves for who we really are- it was that. An inevitable tragedy. I came to terms with the weight of our family’s decisions, and who I was as an older sister.
Erica cried after seeing him, and my body froze. I felt like I left my body seeing him, this full adult. Who didn’t know me. All the reason to, I was a stranger.
I sat in his favorite seat, and he exploded on me. So much anger- the biting of his hand. I felt horrible. Ashamed. I understood why he would hate me.
I kept in my lane, and carried a photo album of his life back in the states. At that point I debated what to do- do I give it to him? Is it just a slap in the face? My heart was flipping and wrestling with what was right and wrong.
But he grabbed it out of my hand, completely wrapped in it. And he never put it back down.

I didn’t know what that meant for my future relationship with him, but I know he remembered those days fondly.

It still is painful to talk about him. I wish it wasn’t. I wish it wasn’t painful thinking that we have no relationship, and that I’ll have to make the impossible happening my rebuilding that one day.

That is the next step.

Our Disabled Memoirs

Johnny smiled like everyone else. He use to play and laugh with all of us when we were so much younger. After watching repeats of movies like “Annie,” he would pick up tunes and sing them much more than we considered necessary, and we expected him to turn into a musical prodigy. He was only two years old when he embraced musicals and could memorize any song he wanted to.
Later, Johnny expanded his musical repertoire to Singing in the Rain, Helmot Lotti, Shirley Temple, and he began to show interest in the piano. In every song he sang, with every beat he tapped to, there was a mood portrayed, whether it was this immense burst of joy, sadness, anger, or just a feeling of even being lost.
But one day when I was in the first grade, he remained silent. His regression was explained away, and then, it wasn’t something we could ignore. There didn’t seem to be a reason for it, puzzling everyone. Questioned emerged, with action taken shortly after.
Six panelists later, he came home with a diagnosis for Autism- level 3 ASD, the most severe- and there were no more songs. Johnny never sang that same way, almost as if he were becoming an infant again.
My younger sister Erica and I adapted to Johnny having autism. We grew accustomed to his screams before he tried to fall asleep every night and how he would wake up a few hours later. The friends I had in first grade normally didn’t come over. Not many people ever did. People just couldn’t get used to the way he held his hands over his ears so often, why he wouldn’t talk, and he was mocked and stared at, everywhere we went. He would just cover his ears and scream to block it all out, and he hid in the house.
At about the time company would leave our house, Johnny would open the door from the back bedroom, carefully making sure no one was there. As I saw him come out I rushed on over to his side, talking to him, pretending that he understood every word I said. Once, he grabbed my hand and pushed me over to the bench of the piano. It was clear he wanted me to play.
The melody and soft tones of the piano calmed him down, and he urged me to play on. Music, it seemed, was Johnny’s only escape from the situations that bothered him the most. Although he couldn’t speak, he was able to communicate to the world using the expression of sounds and songs. It was his only way to communicate. His only outlet.
My grandma and mom had attempted to take him out into public multiple times, but he would try to run away at every opportunity. The police had to come and search for him four distinct times that I can remember, but it was much more than that. Sometimes Johnny would escape by climbing the fences in the backyard or by dashing out the front door when no one was looking. Regardless, he would be gone for hours on end into the night, making it harder for anyone to find him.
Erica and I were never allowed to go look for him with the police and my family. I remember looking out the window frequently, trying to explain to my sister why mom had left with the police, all while my grandma was in and out, both looking for Johnny, and trying to keep us calm.
They usually found Johnny in the driver’s seat of a random car, crying hysterically and trying as hard as he could to turn on the engine. He clung to the wheel and the officers tried to bring him back home.
Regrettably, I became angry with the fact he was autistic. If it wasn’t for that, I would have been able to go out, my house wouldn’t always be a mess- I wouldn’t always be a mess. My mom wouldn’t have always been too busy. She wouldn’t have needed to take so much care of him or work overtime just to pay for more help for him.
I wouldn’t have needed to take care of Johnny, or clean up after him, or restraining him from running away. I felt as though no one would ever understand how difficult dealing with an autistic brother could be. I grew tired of everyone looking at us all as inhuman, abnormal.
Everything in life could’ve been so different, I thought. He would’ve been a normal child, brother, son; if it weren’t for autism.
It wasn’t that I hated my brother- I hated what autism had done to him. But I didn’t realize that all of my actions made it seem as if I were blaming Johnny for what I was deprived of growing up. Looking at everyone else and seeing what they were able to do- or what they didn’t have to do- made it feel as though I was the disabled one when really, he was.
Time has certainly changed that.
After so many incidents growing up, I was becoming too ashamed to bring up that I had a brother. I wanted him out of the picture whenever I was with a friend. I knew what they would say, as if I didn’t already know, that his behavior wasn’t normal. People pointed out the obvious about him: he yells and screams, he bites his hand, he hurts himself. He cant control the motions and mannerisms of his body, he’s not toilet trained. He claps his hands, stomps, bursts out into hysteria. Combative to others and himself. Did they just think I was completely unaware of that?
Even harder was telling people about who he really was, reminding people he was human. Like the fact that he can sing, that he can listen to a song once and completely know it. He was a Mozart, but no one would know. I didn’t even bother telling people about Johnny at all.

When I was in fourth grade, my mom struggled to make enough money to support us all, so she worked every time at every opportunity. The only one who was able to watch Johnny at the time was my grandma, so he lived with her. But she began losing the strength as he got older to chase him, and she couldn’t run the risk of letting him have free range in the house. Whenever we visited he was confined in one room.
It didn’t bother me at the time.

I turned 12 on June 12, 2007. As school came to a close, the summer pushed its way in with the fresh breeze gently tossed around by the newly blossomed trees. The skies were consistently a rich tone of blue that month, and not once did I remember it raining. For my mom, things were far from pleasant.
For her it was always raining, and not once did she pay attention to how nice the weather was. Those months rolling into June, she was going through something tumultuous that I didn’t realize until it was sprung on me.
My mom called Erica and me into the living room. Something felt uneasy even though the day was at its most beautiful. Beside my mom were dark colored tote bags, and within the tote bags were our passports. Pulling them out, there was one for me, one for Erica, one for my mom, and one for Johnny.
“I can’t take care of him anymore,” my mom told us. “No one can. The government won’t help him, and your grandma is getting too old to watch him the way she has been. He’s been to Ryerson, Wanaque, Haskell, Paramus schools…Johnny is taller than I am- he’s stronger, and he knows how to escape past the locks and the alarms we set up. Your dad’s not here anymore, and even if he did care at all for Johnny he just wouldn’t be able to. There’s only you girls and me now. That’s not enough.”
I sat there blankly, attempting to understand. Erica was just as baffled as I was. “So who will take care of Johnny?”
I glanced at the passports a second time. I made the connection.
Although I couldn’t say it, I knew what our choice seemed to be. Johnny has no one else to turn it.
“Your family, in the Philippines.”
In the Philippines. The only help we had was halfway around the world and totally distanced from New Jersey in so many other ways. It wasn’t a town that someone could easily drive to, It wasn’t reachable by boat or car or train. A different country- a different continent. A different world.
At that moment, I realized the days my brother and I would spend in this house would be our last together.
My moms face turned red within seconds and it swelled up from tears she tried to hide. “He’s my only son. I love him. But what can I do? How can a single mother take care of anyone? All of our struggles can’t make your brother happy. For the past eight years, he wakes up in the middle of the night, crying and screaming at all of us, especially at me because there’s nothing I can do for him anymore!” She grasped at the passports desperately and gave them to my sister and me. The tears ran down her face, falling on the couch before she turned away. As she left, I stared at the drops she left behind, overwhelmed and lost all at once.
Was this really the only choice we had?

Mom planned to leave in early July, and until the day we left we were all uneasy at home. Johnny’s room was emptied and papers were being signed to give custody of him to my family in the Philippines.
I spent most of my last days playing the piano for Johnny, completely disconnected. He liked watching the keys move, trying to sing the pitch of every note. While I tried making him happy, Mom was in the dining room stressing over the bills needed to be paid and the legal papers that needed to be dealt with.
Every time I saw Johnny, he smiled at me, laughing to himself, then stared into space. Moments like this reminded me so well that autism didn’t mean stupid– it was quite the opposite my whole life.
One day, Johnny ran into the room after seeing a tote bag full of his clothes being dragged towards the door. His mouth dropped and his eyes became heavy and full of rage, he stomped his feet and jumped hard against the hardwood floor and began biting his hands as hard as he could- he began biting them, running towards us. Showing us he was hurting, that he was hurting himself. He began to cry, pushing my mom back, throwing the clothes from the bag back into the drawers.
He stood up to my mom, angry. He began to sing:

It’s the hard-knock life, for us! It’s the hard-knock life, for us! Instead of treated, we get tricked! Instead of kisses, we get kicked! It’s a hard knock life!”

“Audrey,” Mom called out, “calm him down and move him away from the bags.”

I locked my grip on both of his arms, pulling him away from my mom. As tears rolled down from under his eyelids, he began to hurt himself deeper, punching his jaw as hard as he could, and latching onto his hand with his teeth. Years of mutilating his hand finally came to a peak when scars and indents began seeping blood and puss, raw and exposed injuries to himself becoming something I couldn’t fix. Johnny desperately tried to escape my grasp, and I knew it was only seconds before I didn’t have the strength to stop him from running back over to his bag.
I tried so hard fighting him. He found a way to roll his wrists and loosen my grip. “No, Johnny! No-” but he escaped and went back to his room.
There was no denying how strong and clever he was. He could crack all the alarm systems. He could run away and avoid the police for hours. He was able to climb and jump fences, getting himself into places that could kill him.
I looked at him sitting on the bed, crying harder than I have ever seen him cry. It felt like no matter how much I cared, how much anyone did, he wasn’t safe here like this.
Mom was outside, bringing the bags to the car.
I muttered to myself, hopelessly, lost. “We don’t know what to do,” I said softly, shaking. I couldn’t speak any loud without bursting into tears. “You’re too strong. You don’t like it here. You don’t like being kept in a cage. I can tell, because you do whatever you can to run away.” Johnny made eye contact, and went quiet. But his eyes were filled with the torment he had faced all of his life, finally connecting with mine. “You don’t have to escape anymore. In the Philippines, you’ll have so much family. You won’t need to be locked up like you are now. You can run around in the streets, knowing that you’ll always be safe because you’ll always have someone to be with. And you’ll have more toys, more company, and-”
I paused as I thought of my next words. “And no one will hate you, or treat you any different. They’ll show you more love than I ever knew how.” He stared at me, confused and alone. “I’m sorry. I’m sorry it took me so long to say it.” I felt as if I failed as a sister.

People with Autism feel, deeply, deeper than anyone else with a heart. And they need love, like everyone else. That was all it took for me to understand how wrong I was all of these years to him.

It was August 27th, 2007, in Angono, Rizal. With just one month of Johnny being there, he had already developed more skills than he had in America. He learned to brush his hair, take a shower, use the toilet (that was a very big deal). He didn’t need to be restrained anymore- everyone in the Philippines was family and everyone was so willing to help everywhere. The entire community knew who Johnny was, and they were all thrilled to have him walk their streets, as family.
I learned so much more about him- he hated things out of order, but I didn’t realize just how smart he was at putting everything back exactly how it should be. No matter how complicated the puzzle, he always managed to put it together. He loved DVDs, fans, running water and technology, and his knowledge for music seemed to be expanding limitlessly. He knew the precise rhythms, the keys, and pitches. This was not a surprise to my mom who always believed he would achieve great things. She still seems to expect even more from him, which I don’t understand at all, being what he’s done so far is incredible. Nevertheless, my mom has faith that Johnny will be one of the best musicians in the world, someday. My dad does, too.
Faith grew in all of us, and my mom to this day believes he won’t have autism for much longer. One day, Johnny will live a normal life, playing with all the other children, and moving back to live with my sister, Mom and me, if he chose to. For the time being, he still sung when he was angry, upset, happy, or lost.
We prepared to leave him at the end of August, but stayed until October. I remember it so clearly- I sang him Singing in the Rain, before he fell asleep. We went to the airport at three in the morning without letting him know we were leaving. It felt cruel. But he was heavily asleep. Not once since he was in the Philippines had he woken up screaming.

A week later my mom, sister and I had already gone back to our routine, still trying to fill the vacated closets with our clothes, trying to go on. One evening, my mom received a call from my aunt in the Philippines.

Her tone was urgent over the speakerphone, “He woke up and went out searching for all of you. I’ve never seen him cry before! He looked in the closet where your clothes were supposed to be, and when he couldn’t find them he grabbed his hands and started biting them!”
What we thought was a pause was instead Johnny in the distance, who began singing, loudly enough for us to hear one last time:

“Maybe far away, or maybe real nearby,
He may be pouring her coffee, she may be straightening his tie.
Maybe in a house, all hidden by a hill,
She’s sitting playing pianah, he sitting paying a bill.

Betcha they’re young, betcha they’re smart,
Bet they collect things, like ashtrays and art.
Betcha they’re good, why shouldn’t they be?
Their one mistake, was giving up me.

So maybe now it’s time, and maybe when I wake,
They’ll be there calling me ‘Baby,’ Maybe.

So maybe now this prayers, the last one of its kind,
Won’t you please come get your baby? Maybe?”

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