How I Went From Being Bad to Being an Extremist
“So the question is not whether we will be extremists, but what kind of extremists we will be. Will we be extremists for hate or for love? Will we be extremists for the preservation of injustice or for the extension of justice?”
Dr. Martin Luther King, Letter From Birmingham Jail
365 days ago, I laid awake most of the night worried about the reverberations of the day ahead. I pulled myself out of bed and awakened my 13 year old son Quentin who was peacefully sleeping between my husband and I. I turned on our local NPR station, WAMU. As I went about the mundanities of my morning, I listened for my own voice in the reporting. I felt terror of the exposure and what others would think of me once my son’s story was told. I didn’t realize at the time that experience would begin a journey of both awareness about my son’s autism, and also a level of self-awareness I’d never had.
A few weeks prior to this day, a friend called and asked if I had any documentation of my autistic, non-speaking son’s seclusions at school. This was the end of February, about five months after his last seclusion incident. It was a bit jarring; his seclusions were something I was trying hard to forget. Quentin started a new school in which he was no longer being secluded in October, and I’d ritualistically thrown away what felt like terrible ghosts by whom we never again wanted to be haunted. I know it’s not what parents are supposed to do, but that’s what I’d done.
Then, I remembered, that in one of our placement battles, we’d hired an attorney to get him into a private school where we thought he could be happy and thrive. She ordered all his documents to review for the case. We had so many terrible IEP meetings, so gut-wrenching. At times, walking out to my car, I felt as though someone drilled a hole into my skull and sucked my soul out. When the county moved my son a fourth time, that’s when we fought a placement they were trying to foist onto him that we knew would not be a happy place for him. After five years of suffering routinely in solitary confinment cells in two different schools, we felt he deserved better. The new school was over an hour each way from our house, but the closest school with no seclusion cells.
My friend revealed to me that an investigative reporter named Jenny Abamu had unearthed the fact that Fairfax County Schools had not reported their restraint and seclusion statistics to the Department of Education for several years. I always assumed my son was one of the only children being secluded. Afterall, he’d been moved on his fourth placement to an all day, daily ABA program for children with “extreme behaviors.” She asked me if she could pass on my information to the reporter, and said the journalist was interviewing many families and needed documentation that seclusion had in fact occurred during those years. I said I would.
I sat at my kitchen table thinking about the events of the last few years. I also thought about my own daily seclusions in the “naughty closet,” where I spent many miserable hours of my own childhood at school. I know when my friend called, it was still light, and by the time I got up to go to my storage room to locate the documents, something I dreaded doing, it was well after dark.
As I entered the storage room, I heard the freezer whirring, on which the box of horrors sat atop. All the memories of the pain of the prior five years flooded over me. If I summoned these spirits of seclusions past from the box, would they again grip our child and our family with that trauma? How could I possibly do this? Why does this journalist want to drudge all this up? Then my phone rang, and it was Ms. Abamu. She had a very kind voice in a moment where kindness felt like a soothing warm bath. She told me she’s spoken with numerous other families whose children endured the same pain my son had.
It hit me like a lightning bolt that my child was not the only one. That our family was not alone. I still wasn’t sure why coming forward was necessary, especially going on record, even though my son seemed completely unfazed by the prospect. I assured her I would gather what documents I have and speak with her in person. My feeling then was that coming forward might help other families going through this same living hell. But at the same time, would my son be retaliated against? What would people think of us and our parenting? What kind of people let their child be secluded? I left the storage room. I decided I wasn’t going to do it.
Then as I left, I started feeling nauseous, my head spinning. I had to do it. The reporter told me only one other person was going on record. I knew if I didn’t, being the only parent with documentation, the story might die and nothing would change. I stormed into the storage room, yanked the box off the top of the freezer, and all the papers fell from the box and cascaded down like a ticker-tape parade. Except rather than being a marvelous celebration, this was a parade of my child’s agony that settled onto the floor. I decided to sit down, extrapolate the seclusion documents from all the other papers. I’d pile the seclusions in a pile next to me, and the rest back into the box.
I read the first seclusion document I picked up, which said:
Quentin was crying, banging his head against the wall of the Quiet Room. He took off his clothes because he urinated. Staff told him he could have clean dry clothes if he calmed down. It took him about 20 minutes to finally calm down.
I wept.
I decided I would not read anymore as I sorted the papers. Any paper that had the “Emergency Seclusion” heading went into one pile outside the box, the rest went back into the box. As the seclusion pile grew, so did my horror at the pile amassing. When I finished, I picked up the pile of papers, three inches tall that represented hundreds of hours of our son’s pain. Seclusion wasn’t an “emergency,” or a last resort, it was a lifestyle for Quentin. His days and nights were haunted by the fear of it. He couldn’t sleep alone, couldn’t be in a room alone, couldn’t close the door of any room, even the bathroom. Even with seclusion long out of his life now, the remnants of the trauma still persist in his life.
I sat gripping the pile of documents enraged and my mind started racing.
How dare they not report these incidents! How dare they force Quentin to endure all his seclusions locked up alone in a room, but take no accountability for it! How dare they try to erase my child! How dare they try to erase all the children like Quentin! If there is nothing wrong with seclusion, why cover it up?
Another shocking realization came to me as I held the heavy stack alone in a dank storage room. My god, it was the seclusion that CAUSED his worst behaviors. He’d been in a school that didn’t seclude him for five months and he was happy. He wasn’t a new little boy, but the boy he was before he’d been harmed. The behaviors they were trying so hard to modify through behaviorism and seclusion weren’t autism; these were trauma responses.
For his sixth school in thirteen years, we wanted a placement that had no seclusion. We didn’t think the seclusion itself caused meltdowns at the time, but we’d been assured so many times seclusion will make his meltdowns subside eventually, and it never did. We never felt good about it, asked for it’s cessation in every IEP meeting, only to be told if not seclusion, then they’d have to involve law enforcement, and he’d end up in juvenile prison. Considering that, the padded room didn’t seem as terrible.
We were gas-lighted for years.
But my gas-lighting began at age five, the first time my teacher locked me in a closet for my ADHD behaviors. Over several years, seclusion was normalized for me. I didn’t hate my teachers for locking me up; in fact, I was grateful they never ratted me out to my parents. No, I deserved seclusion, because I was bad. Children don’t hate those who mistreat them. They hate themselves because they begin to believe they deserve to be treated with cruelty.
Now, I was not only a really bad kid, something I’d always thought of myself, but I was also a bad parent, and everyone was about to know it when I came forward.
What concerned me more than what others would think of me, was that people would misjudge my son. He could not speak. He communicated his frustration the only way he knew how. He’d suffered the punishment of unfair judgment heaped onto him far too much already. He was so happy at his school at that point and was healing. Should we risk ripping the scab off? We’d told nobody about seclusion, even family or our closest friends. It’s not something one brings up in small talk at a party. We always wanted people to know all Quentin was accomplishing and how awesome he is. We were never ashamed of him. We felt like we were failing to reach him and do right by him.
But come forward I did. I knew I couldn’t change the past. I knew Quentin would always feel that pain, but if I came forward with his story, at least his pain could have meaning. The truth rotting in a box on top of my freezer in a dark storage room did nobody any good. Maybe something good could come from something egregious was my thought process. Surely when exposed, the county would be forced to stop doing it.
I talked to him about it all. He told me he loves his new school and signed that seclusion hurt. I apolgized for letting it happen and he forgives us. He’s an extraordinary person, so full of joy and love.
March 13, 2019, I heard my voice talking about my son’s ordeal on the radio. It became major local news and by June was a national story. During that time, I’ve protested, spoken at and disrupted school board meetings, gone to the press several more times, testified in front of the Virginia Department of Education, attended local campaign events, handed out fliers at my local farm market, called state and federal legislators, walked the halls of power at the Virginia statehouse and the Hill, filed a federal lawsuit, and formed an alliance and an indelible bond with thoudsands of self-advocates, activists, parents, and disability civil rights groups nationwide. You see, this isn’t a new fight. I’m a newcomer to a struggle many have waged for decades now. As our movement grows, we remain determined. The courage of so many others who came before continues to inspire me.
But, at the same time, as I type this, thousands of children are being held in dangerous restaints that injure and kill, and thousands more are being traumatized in seclusion cells, not just nationwide, but worldwide.
This is a pervasive worldwide human rights crisis.
I was thinking the other day about the year since my son’s story aired as the anniversary approached. While the school district continues to double down on restraint and seclusion and they persist practicing both entirely unabated, they have not learned a thing and haven’t changed, but I have. I’ve thought about all I have learned from this past year, and wanted to share all of it, but that is probably a book, so I’ve edited it down considerably to the most important points.
Restraint and seclusion, while they are far from unusual, both are cruel. They damage relationships and cause trauma responses that exacerbate whatever issues they’re intended to fix. They also break souls, bodies, and can kill. Restraint and seclusion have no educational or therapeutic value. Because they create a toxic culture of trauma, where all engaged in it are in a perpetual fight or flight state. All in the culture; children, teachers, and staff, are in fact less safe.
Children aren’t broken and don’t need to be fixed. It is adults who need to adjust our lens. Adults must see all children as human beings to comfort when they are in distress. They’re not circus ponies to control and teach new tricks, then punish for our failure to reach or accommodate them.
It’s best to trust our own instincts as parents. Our initial instinct and continued objection to seclusion was correct. We allowed ourselves to be rolled over. We should have stood our ground.
“Experts” don’t know as much as self-advocates about autism. When I have an autism question, I ask autistic people now. Almost all of the behaviors I was told were symptoms of my son’s autism were trauma reactions. The distressed behaviors that were autism were all amplified by his trauma.
The same goes for my own neuro-divergence: ADHD and Dyslexia. I spent fifty years of my life being ashamed of my diagnoses. It’s something I told noone for many years. I hid in the dark shadows of my own internalized abelism. Then, witnessing the courage of so many autisitic self-advocates, I decided to publicly come out with it several months ago. I’m no longer ashamed of either. They do define me, and while both have caused struggles, they’ve formed me into the person I am. I like that person now. I’m neuro-divergent, which makes me disabled. It’s not my neuro-divergence that has caused me most of my struggles, but a world built entirely around neuro-typicals is disabling for neuro-divergents.
Lastly, we are not alone. We never were in fact. There is hope. We will end the use of dangerous restraints and seclusion of our most vulnerable children. We will end this toxic cycle so there will never be another generation for whom this is normalized.
I’m an activist and have long been an extremist for love and justice. Any true believer in love and justice believes that extends especially to our most vulnerable children. Seclusion changed me as a child. It’s changed me as an adult. Seclusion has made me an anti-seclusion extremist.
Today, in the school district where my son was secluded 745 times in five years, restraint and seclusion continue to be practiced, despite all that’s happened. Fairfax County isn’t an outlier though; in the United States, this is a norm. Children need to be liberated from seclusion. Dr. King once said, “justice delayed is justice denied.” Every day American children are denied their liberty from seclusion, they are denied justice to which they are entitled.
“Emancipate yourselves from mental slavery, None but ourselves can free can free our mind….Won’t you help me sing, these songs of freedom? ‘Cause all I ever had redemption songs.”
Bob Marley
Children have a right to be emancipated from seclusion. They have a right to be heard. They have a right to be respected. Children have a right to be loved and protected. They have a right to love themselves as much as we love them. Children have a right to redemption when they fall, and a right to freedom from cruelty. The pain must stop, and healing must begin.
Therefore, seclusion must end.
