He was my little brother, and my whole life was centered around protecting him. We lived in a rural area in the backwoods, and awareness and acceptance was far behind. Elementary school was the worst, because whatever teacher you had– you had them and only them until the year was over.
I was in seventh grade, and my brother was in third. He’d been held back a year, and so this was the second year with this same horrid teacher.
I hated her with the fire of all the stars in the universe because the disdain she felt for my brother was palpable. You could almost see it teeming up out of her like an acrid sulfuric smoke… but what could I do about it?
My brother was a gentle soul, quiet, humble, utterly and completely selfless. He was so quiet, in fact, that he rarely talked. When he did, his voice was surprising– several octaves higher than you’d expect, almost like an infant speaking a sentence. It was a reflection of the innocent wonder he felt about the world.
Mostly, all you heard from him were the tics from Tourette Syndrome and his repetition from the word, “Sorry” over and over. That was the OCD. He had to say it thirty-two times, at least. If he didn’t feel purged of whatever he was apologizing for at thirty-two, he started over.
If you touched his right side, he had to touch his left. Kids picked up on this and would start hitting him in one arm. They’d do it and count with random numbers, trying to distress him and throw off his count, “3, 18, 44, 7, 99, 2, 63, 87…” and just keep hitting one arm. He would need to count how many times they hit him and then hit himself in the other arm an equal amount of times.
On top of Tourette’s and OCD, there was also dyslexia, ADHD, autism, and epilepsy. His writing, when he could steady his hand, looked like a blindfolded two-year-old had scrawled it. He didn’t have the fine motor control to do better. That frenetic script could no more stay within the lines than he could, half the letters were backwards, and the spelling was a loose approximation of phonics.
To keep him from my parents’ frustration, I sat with him– all night, every night– trying to finish that evil teachers’ homework with him. It wasn’t appropriate for him, wasn’t beneficial for learning, and just caused him so much distress that he couldn’t hold still or stop his tics from even preventing him to putting the pencil to paper.
He had to be reminded multiple times per sentence–sometimes per word– to press forward, stay on task. He wasn’t learning. He was suffering. When I could get away with it, I would wink at him, grip the pencil in the fist of my left hand, and slop something down for him. I’d wink and nod, and he’d smile, a silent thank you in his eyes.
All he wanted to do was go to the garage and disassemble our father’s tools and gadgets to rebuild them into something amazing– a pulley system to move things around his imaginary treehouse, a dispenser for the cat’s food, a buffer to make the lawnmower seat bouncier…
The best education was the one he silently gave himself, immersed in the richness of the 56 immaculately-maintained and hardily fleshed-out imaginary worlds he accessed from that garage.
Every day at lunch, I’d walk to his end of the school. It was recess for his class, a time he needed so desperately to spend all the energy he had and to zone out from the work he tried so hard but couldn’t focus or control his body enough to finish. And every day, there he sat, shut in the classroom, alone, lights out. Alone.
I’d watch through long, slender window in the door. There he sat, his head bobbing and jerking to the right, his eyebrows and ears moving uncontrollably, grunting and hoo-ing over and over with the tics that got worse and worse the more he was stressed. He was writing. Always writing.
I’d dig my nails into my arms so hard with rage and abject sorrow that I’d draw blood. And then we were both bleeding.
My brother would reach up and wipe the corners of his mouth, trying to prevent the blood from getting on his paper. One of his tics was opening his mouth so wide that these sores started forming in the corners of his mouth– and for months on top of months, they never stopped bleeding.
Over night, they’d scab over, then in the rush of trying to get him ready for school, our mother yelling in frustration trying to get herself and three children fed, dressed, and out the door, he’d start again. The sores grew over time, too, these big, sad punctuation marks on this mouth that would open so wide you could hear his jaw grind.
The thing that was the most sad was that he never complained. Ever.
And every day, there he sat in that room, alone. I’d begged my parents to do something about it. They seemed to oscillate between sympathy for him, sharing my indignation, and believing he just needed more discipline. My undiagnosed autism was less obvious, my dyslexia mostly self-accommodated by that age.
But I understood him. I knew how he felt, and they couldn’t. Maybe if they had more information, or access to the neurodiversity movement– but they didn’t.
So one day, standing in the hallway, digging my nails into my skin again hoping that the pain would keep me more angry than destroyed so that I didn’t start crying, I couldn’t help myself anymore. I went into his classroom to talk to him.
He was writing sentences. “I wil bo my work.” But the “r” was backwards, too. He never did anything wrong, never swung back at his bullies, never talked back to his teachers, never said no. This was learned helplessness. I told him that he didn’t have to finish the sentences. He looked at me like, “Are you sure?”
“Yes, I’m sure,” I told him. “You can just get up and play in the room.”
I left him there and walked out of the building, my feet kicking up a trail of dry dust behind me as I marched with purpose to the playground around the backside of the school.
All eight swings were going, kids waited in line at the monkey bars. Two little girls in pig tails and matching dresses were spinning on the new merry-go-round. And there, in the shade, his teacher leaned against the brick, grinning warmly and watching her kids. That was not the face she wore when she looked at my brother.
She saw me coming and smiled at me, then her smile melted into a concerned grimace. My approach was not a friendly one. My adrenaline and rage was consummate. I believe I could’ve turned over a vehicle with the energy of the raw electric sense of justice coursing through me.
“You are the devil,” I told her, “And I will send you back to hell if my brother spends one more recess in the dark, alone.” The teacher didn’t tell my parents everything, maybe because it didn’t seem plausible, and maybe because she didn’t want them to realize just how cruel she’d been for how long.
I paid dearly for that stunt. I knew I would pay dearly. I was the honor’s student with the rigid rule-following and perfectionism, and so any infraction was a big deal. This was the biggest– but it was worth it.
My brother spent no more days in seclusion after that.
- ICARS: The Time to End Restraint and Seclusion is Now - February 12, 2021
- My experience of restraint in a psychiatric hospital: This is not a love story - March 18, 2020
- Trending in the US: Calling the Police on Disabled Kids in Kindergarten - March 1, 2020