Was I A Good Sister?

This short story entitled “Navigating the Joy and Guilt of Discovering My Brother’s Voice,” is written by guest author Julia Chiou Knutson.

The phone buzzed awake on the nightstand while I was getting ready for sleep. The room embered in the warm, dim light of my night lamp and now  the blue light of my phone. I grabbed it and wrestled onto my college-apartment bed. The text was from my mom to the family chat, and I checked it as a last errand of the day:

“Sam has started a new program called Spelling to Communicate! His teacher (DM) reads a lesson to him, asks questions, and he points to letters on boards to spell the answer. Guess what he spelled?!  (I’ll write Sam’s answer in all caps)

DM: Where is Plymouth Rock?

MASSACHUSETTS

Can you believe it?!?!”

The truth was I couldn't believe it, and I didn’t. Sure, Sam was doing so much better in the four years since I left for school. According to my mom, his self-injury was down to one or two short outbursts a week instead of happening every twenty minutes like when I was in high school, and while overcoming self-injury was incredibly significant and hope-fulfilling, it felt like we were moving out of the negatives rather than making any progress in the positive direction. He still had many service needs; we were changing his diapers, dressing him, feeding him, pushing him in the stroller, now just without the blood. Sam didn’t hold the side of his pants to pull them up, hold edges of socks to get them on this feet, hold a fork to spear a hot dog, hold a spoon to scoop some rice, drink from an open cup without spilling, hold a pencil to make a mark, or coordinate his index finger and thumb to execute a pincer grasp. With this in mind, I thought his physical capacity to spell was just not there, and at a time when I didn’t know to disconnect the idea of motor skills and language, I didn’t even consider that Sam had the mental capacity. 

Granted, by this time I had learned to disconnect physical actions and intention. In 2012, my mom read a book called Carly’s Voice, which was written by a girl with autism. She too was non-speaking and violent, but when she was 11, she reached for a computer and typed “H-U-R-T” then “H-E-L-P.” This shocked her family and her therapists as they had never taught her these words, and she had never spelled to communicate before. As her therapists worked with her on spelling, she revealed why she hit herself. She said, “Because if I don’t, it feels like my body is going to explode. It’s just like when you shake a can of coke. If I could stop it I would, but it’s not like turning a switch off. ” In a moment when we couldn’t hear Sam’s voice but so desperately needed to, Carly’s voice became a surrogate. After hearing her story, I had the sensitivity to see these sensations come over Sam’s body and the uncontrollable need to hit himself take over. So I understood that what we saw on the outside did not tell the whole story of the inside. I knew then that it wasn’t Sam’s choices that were fully in charge of all the damage he did to himself. From Carly’s story, we also understood the possibility that Sam was intellectually “in there” but his body could not find a way to communicate his words. Still, when I watched the video of ABC’s report on Carly’s story, I got the sense that she and Sam were not completely the same. I saw her walking without any imbalance unlike Sam, I saw her isolating her finger so that she could type on the computer, I saw her responding to verbal cues, and the video also mentioned that she could undress herself. To me, Sam and Carly were similar, but not the same, and I could accept that the explanation for her self-injury could also explain Sam’s, but I wasn’t ready to make the leap that he was also just as mentally cognizant. 

To add to my reluctance to accept my mom’s text declaration, she was also known for her boundless optimism, a jewel of a quality for a parent of a neurodiverse child, but which quality blurred her lines of reality in the eyes of the family and sometimes made it hard to believe her. But I decided to go ahead and click the link she had copied at the end of the text. 

YouTube launched on my phone and a video popped up showing half of Sam’s back on the left side of the screen and two feet to his right, half of a woman’s back, his teacher, DM, I assumed. In the video, Sam’s fifteen-year-old body is sitting down in his stroller-wheelchair with his front facing a desk that I recognize as in the front of our living room. DM is also facing the desk, paper in hand. I hear her reading a lesson about Plymouth Rock. “The Mayflower landed at Plymouth Rock in December 1620.” As she read, Sam fidgeted in his chair in the usual way. His head shook back and forth, pivoting on his neck in a figure eight, a quick jab to the left then a slow return to look up to the right with his always crossed eyes. His legs were crossed on his seat but not with each foot tucked under the opposite leg like they teach you in kindergarten. His right leg was bent, right foot wiggling up and down on top of his belt left leg, like the half-lotus pose in yoga meant to stretch your hips. Sam’s always been very flexible, I was told as a child that that was a symptom of his condition, that his muscles are too loose. I could tell even from behind that his arms were folded across his chest as they usually are, but as usual Sam wasn’t doing it in the way they would teach you in kindergarten. Instead of both hands being balled in fists and tucked under each arm, the right hand is tucked under the left bicep and the left arm is threaded under the right, the open and flat left hand coming up and placed delicately on top of the right bicep. It’s these subtle differences in Sam’s positioning--the open fist, the delicate, almost wilting, placement of his hands--that show me, have shown me for years, that he doesn’t have very good control of his hands. His chubby yet undermuscled hands, with small palms and short, flat fingers that have the triangular proportion of candy corns. Their skin is rough with eczema and much darker on top than on the palm, the pointer finger of the left hand is especially flat and wide with calluses on either side of the finger from all those times he would stick it in his mouth to bite and scream between punches to his cauliflower ears. He doesn’t have very good control of his hands. I love those chubby hands and when, during quiet moments of sitting together with no exchange of words, they delicately wilt into mine.

As the teacher read, she would stop to spell out certain words. “Plymouth rock is in Massachusetts. That’s M-A-S-S-A-C-H-U-S-E-T-T-S. Sam, where is Plymouth rock?” Sam’s hand needed prompting to unfurl from its hold, but when his hand was finally exposed, he suspended it in the air and I saw that it had been placed in what looked like a black sock with a hole in the top left corner so that his pointer finger could poke through. With Sam still shaking his head in his automatic way, DM held in front of him a white foam board, only slightly bigger than a piece of printer paper. Glued onto the board were nine big foam letters of different textures and colors. This board had I-J-K-L-M-N-O-P laid out in two rows. The teacher repeated the questions, “Where is Plymouth Rock, Sam?” He lifted a shaky hand and jabbed his isolated finger forward to scratch the letter M then pulled back. 

What. 

“Good job, Sam! Nice, right on it,” DM said. As if from muscle memory, she quickly placed the board down to pick up another, this one with letters A-B-C-D-E-F-G-H on it. Sam was still shaking his head. “Look at the board, Sam” she said. “Get it, get it, get it” she said, prompting Sam’s arm to move from its station in the air. Sam’s arm lunged again, this time hitting the white space between the A and the B, he lingered, scratching the board there, trying to inchworm his way to the A. “Pull back and get it,” DM said. She reset his arm by pulling it back to a neutral position, she then let it go and he sprung it like a catapult. He hit A then pulled back.

No.

She switched the boards again, this time presenting him with letters Q-R-S-T-U-V-W-X-Y-Z. A similar process ensued. He hit R, then overcorrected and swung over to T, finally pulling back with the help of DM and striking S then pulling back himself.

No way.

With each movement I saw with my own eyes Sam’s aim and his intention; he pulled his hand back after striking each correct letter, not before. It was night and the apartment was dim and still all around me but the dawn of illumination was coming over the horizon of my ignorance. Sam was like Carly in more ways than one. He could spell like her. He knew what he was doing like her. He understood verbal commands like her. He understood the world around him like her. With every additional letter he plucked, S-A-C-H-U-S-E-T-T-S, my world and everything I thought I knew about my brother from the past fourteen years was being stripped away. 

S - He is in there.

A - His body is different from his mind.

C - He will be able to communicate.

H - I will be able to hear his voice. 

U - He’ll be able to talk to us. 

S - He’ll be able to say what he likes and what he wants.

E - I’ll get to know my brother.

T - What horrors has he gone through by himself, being locked inside. 

T - What horrors has he gone through because we treated him like he wasn’t in there.

      Talked to him like he wasn’t in there. 

S - What will he say when he writes about me. 

As if I had approached the bar of God on the day of reckoning, my life--every interaction I ever had with Sam--flashed before my eyes. 

The memory that stood out the most was from six years previous, 2011, a year into the days of violent self-injury and a year before reading Carly’s Voice. I decided I was going to have a talk with Sam. I didn’t know if he would understand me, but I felt that the hitting was so bad that I had to do something. And I thought that I could do something by talking to Sam because without Carly’s voice to teach me, I made judgements about Sam’s actions only through what I could see, and Sam’s facial expressions, even when he wasn’t hitting, made me think he was an unhappy, angry kid, and that’s why he was hitting. So I marched into Sam’s room, he was lying there on the bed. I said, “Sam. The hitting has got to stop. This is really bad for you and really bad for our family. If you can do anything to stop this, please, please try your hardest to stop hitting.” It felt like a prayer. I was repeating that same message, the same plea, over and over again in different words because one body of words, one iteration of my intention was insufficient in capturing the sincerity of my fervor. “Sam. We all go through hard things. You have to stop. If you can try, please try and stop the hitting. This is really hard.” It felt like a prayer because I was pleading with a being who I did not know was listening and who could not answer me in words. Why did I pray to Sam then? I guess I had faith that he was listening. But I don’t think I truly internalized what that meant if I believed he was listening, because if I did, I wouldn’t have scolded him so. How could I say those words to him? Now that I knew he did hear me, that he didn’t have control over his body, and that he had an opinion of me, I was mortified at what I had said to him. I was mortified that I had talked to him as if he weren’t there under the moral guise of having faith that he was. 

As this moment played on the screen behind my eyes, I felt so much shame. Shame at my hypocrisy, my cruelty. As the movie kept playing, however, it showed that my relationship with Sam wasn’t a one-sided picture. When I lived at home, I sacrificed time with friends and on school work to go with my mom to countless therapy sessions, to practice motor skills with him myself, to feed him, to change his diapers, to wash him. Once I had my driver’s licence, I made sure to take Sam out as often as I could. I thought about how it must be for Sam to not be able to elect to go anywhere, so the places where I elected to go, I would take Sam with me. We went on drives together all the time. He would sit in the back of my CR-V and we would drive up and down the coastline for miles, windows down, listening to surf rock, me singing at the top of my lungs, pretending in my head that Sam and I were singing along together. I longed to hear his voice. All I could hope was that he liked the music I played. I knew he liked the music I played for him on guitar. The summer before my senior year of high school, I started learning guitar on my dad’s old acoustic ovation. I knew four chords and sang the same songs over and over again. Near the end of the summer, when Sam was starting to show improvement in his behavior--he wasn’t hitting as frequently and would smile sometimes--I would sit on the edge of his bed and play guitar. He was usually lying, stomach down on the bed and once he heard the first few strums, he would perk up his head, rotate and hop over on his stomach so that his face was right in front of the guitar strings, and listen while tapping his feet and trying to get ever closer to me and the strings. Those moments were precious to me. 

After that night of illumination and that moment of reckoning, I didn’t know how to answer the question of whether I had been a good sister to Samuel. There were memories that spoke for and against me but what I needed most was to hear Sam’s voice of forgiveness. The uncertainty about the answer to this question and the subsequent guilt lurked inside me as the months then years passed as Sam was working to become fluent on the letter boards. I was simultaneously exhilarated with joy and reminded of my shame everytime my mom texted phrases that Sam had spelled openly, like when asked what was something he was known for and he spelled, “Going rogue,” or when asked what his New Year’s resolution was, he spelled, “I am going to join the others on instagram,” or when he did his thing and went rogue in a spelling lesson to say, “Decide to major in the worst subject, Julia.” He then spelled that he was just being funny and said, “I only ask for good moments at grad school for you.” What a joy it was to have him make fun of me, to see him spell my name. He seemed to love me, but I was reluctant to believe it. I didn’t want to assume anything for him anymore, I was determined to let him speak for himself, but he wasn’t yet fluent on the boards so I couldn’t just ask him to forgive me and erase that image in my mind of my talk with him in his room all those years ago. When on Valentine’s day he spelled, “Love mom, Griffin, dad, Lisa,” I selfishly wondered why he didn’t spell my name, though he didn’t spell my sister’s name either, and both of us were living out of the house at the time. Another day it felt like I took a stab to the heart when he had a lesson about behavioral addiction. He was asked, “Have you ever tried to stop a behavior?,” “Yes,” he replied. “Were you successful?,” “No,” he said. “What was the behavior?,” “Hitting myself.” I wondered if I travelled back in time to my talk with Sam and instead said, “I’m so sorry that you’re going through this, Sam. We know that this is hard for you and we love you no matter what,” would he be expressing that he had tried to stop hitting and that he was unsuccessful? I heard his answer as a lack of self-esteem, as shame at himself for his hitting, and I wondered if I was responsible. 

Three years after I saw Sam spell Massachusetts, I found myself living back at home during the Coronavirus pandemic. This was the first time since he had started spelling that I was living under the same roof as him. I was awkward, not knowing how to treat or interact with Sam. He still wasn’t yet fully fluent on the boards nor was he currently seeing DM due to quarantine, so I  knew that there was much to know about Sam--what he liked, how he thought, his interests, what he preferred to do--but I didn’t know what those things were. I was still loath to assume since not knowing Sam’s voice, not knowing why he was hitting, and creating an explanation with my own judgements had been the primary crime from years ago about which I felt so guilty. The longer I lived there however, I realized I couldn’t just not interact with Sam. I had to move forward and though I didn’t know everything about him that there was to know, I had to do the best I could with what I had. For a moment I allowed myself to assume Sam’s voice, and again, when we had quiet moments of sitting together with no exchange of words, and his hand grabbed mine, I told myself that that was forgiveness. I felt some relief. 

This relief was short-lived, however. I couldn’t reckon with the fact that I still needed to assume Sam’s forgiveness in order to forgive myself. My crime was assuming Sam’s voice and to absolve myself of that crime, I had to commit the same offense. One day I was searching through my mom’s past Facebook photos in order to try and put together my childhood with Sam, looking for an answer to my current conundrum in the past. I was surprised to find an album from June 2011 entitled, “The Tantrum King.” In it was photos of a digital book that an autism professional who was working with Sam had written specifically for him. In it there were illustrations of Samuel as The Tantrum King who “thought everyone was there just to serve him.” The book painted Sam as a demanding, selfish child who screamed and banged his head for attention and food. The climax of the story is when the family wakes up and cries, “NO MORE! We are soooo over the tantrums, the crying, and the head-banging.” As the resolution, the Tantrum King realizes that he would rather be nice to his family and he stops hitting. I was appalled and relieved to find this book. The experience of my memory of having a talk with Sam was so similar to the one described in this book and I remembered that having that talk was what I was instructed to do by an autism professional. I was a kid trying to do what was right with all that I knew. When I found this book, I forgave myself, and it didn’t need to be in Sam’s voice, it came from my own. I realized that no, I didn’t recognize that Sam had language when he did, but how could I have been expected to? I did the best with what I had and even though I found out later that I was wrong, I could forgive myself for that. In situations where we don’t know everything but we know that there is more to be known, it’s not wrong to act and try to move forward on only what we currently have. And if we find out that we’re wrong in the process, the only thing we can be guilty of is not adapting to new knowledge as we continue to move forward. I joyfully accept Sam’s voice and cannot wait to hear all his likes and interests and preferences and good ideas and bad ideas and choices and opinions I think are great and opinions I think are dumb. In the meantime, I will do the best I can at loving him and continuing to learn to love him.