For Want of a Nail: School Abuse and the Debate Over Cameras to Protect the Disabled
In our district school, right down the hall from the cinder block scream room, there’s a ten foot statue of Lincoln with the usual engraved quote about liberty, equality and honesty. We think the school should take it down.
According to my mother’s family tree, Lincoln is some kind of distant cousin. But the irony that the school mistreated descendants of its own mascot isn’t the reason we think the school should remove the statue. Lincoln didn’t set much stake in perceptions of ancestry—sort of the point of his legacy. The replica is just misleading.
This is a school which chased out a brilliant special education director six years ago because she tried to get the school in compliance with the IDEA (Individuals with Disabilities Education Act) for wider inclusion of disabled students. Like many wealthy districts concerned with appearances, the school spends a fortune to ship children with less-than-high-functioning disabilities out of district and out of sight rather than using funds to build state of the art programs. Some families like their children’s outplacements in private programs that they might not otherwise be able to afford; some are coerced into accepting the placements and would prefer inclusion.
In our case, the private schools also tend to be a long haul away from the community and disabled children often spend more than fifteen hours a week riding buses, sometimes on icy, poorly plowed roads. Some kids stim on bus travel—ours don’t. And considering that our district fired a bus driver for protesting faulty brakes, we drove.
Even with the high level of outplacement, the visible rate of autism among seven and eight year olds in our district is the highest I’ve ever seen or heard of—Minnesota Somali high. Since the rate in Massachusetts is already estimated to be as high as 1 in 48, this town may have a lot to hide—a spike within a spike. It could make prospective business and home buyers wonder what’s in the water. It could hurt real estate.
Whatever the reason, it was clear from the start that the district didn’t want our children in the school. At first we didn’t either; but this was due to complex health issues, not degree of disability. We saw it as a temporary measure. The children had made such enormous progress from simple changes to diet that we were concerned about food infractions and losing ground in development. We thought a high staff ratio in a private school might be “safer” in this sense. But when the children were mistreated in the private school, and we decided we wanted our children in a less restrictive environment and close to home, we discovered that private placement can be a trap: the district could use past “restrictive” placements to prevent inclusion with typical peers in the future.
This is pretty much what happened— the district took the private school’s denial that abuse had occurred at face value, falsely framing the children as “aggressive” and us as spurious reporters by way of denying “LRE” or “least restrictive environment”—sped-speak for inclusion.
For the school, denying inclusion really wasn’t about degree of disability either but that we stank of advocacy. Coincidentally, the district and the private school received a letter explaining precisely why the kids were being officially withdrawn from the private school—from the physical assault to the strip search and lack of accountability—the very day the Occupy movement was launched in 2011 and we were seen as nothing more than troublemakers trying to “occupy” the district. Knowing that our issue with the private school had been mistreatment, the district principal threatened to build a seclusion room just for our kids in an openly recorded meeting. His feet did a little dance under the table as he issued the threat while simultaneously dangling admission over our heads. By that time, the children had been out of school for more than two months and it would be another two months before the district finally relented and agreed to provide them with a Free and Appropriate Education, but only on an irregular “trial” basis. Despite the coercions, we still objected to the use of seclusion in that meeting for the record: restraint and seclusion for noncompliance are illegal in this state unless parents agree to it for supposedly “therapeutic” purposes.
Never mind that there’s no evidence based support for restraint and solitary confinement according to Daniel Crimmins, director of the Center for Leadership in Disability at Georgia State said at a Senate committee hearing last week. Crimmens said, "The vast majority of professionals feel that these techniques are not effective means of changing student behavior, and have no therapeutic or educational value. In fact, seclusion and restraint can escalate children's arousal, deepen negative behavior patterns, and undermine children's trust and capacity for learning."
The district principal was attempting to create the impression that our children were such enormous behavior problems that the school would, for the first time, be forced to create a solitary confinement cell. What the principal didn’t mention is that the school had maintained a seclusion room for more than a decade. Former special education students remember being placed in a cinder block closet every day in grade school. At the time, their parents were told that the school was within its legal rights to do this; but due to current bad press on “scream rooms,” the school has become more “quiet” about its use of a “quiet room.” Staff won’t talk about it and even current parent volunteers have not been allowed to see the room. But it exists: our children’s description was the same as that of former students, down to the color of the paint.
My grandfather was born in this town but his father decided to move soon after, walking away from beachside property because you “can’t train horses on sand.” You can’t build appearances on it either.
You also can’t build sewers on sand—they keep sinking around here and releasing raw sewage into storm drains and out into the ocean. Fair analogy for what’s happening in this district: We can’t take these events personally any more than we would a septic disaster—we just had the bad luck of pulling the chain on a crumbling system at the wrong moment. A lot of people ended up covered in shit and some will never come clean, but nothing is ever black and white. To quote French Resistance fighter and novelist Romain Gary, “Black and white makes me sick. Gray—that’s the only thing that’s human.”
Yes, I’m sure there are a lot more than fifty shades of gray to human nature.
For example, some of the same staff in the district who engaged in abuse and retaliation pulled out the stops to organize support for a wonderful family that suffered a terrible tragedy in the community. Maybe it was a kind of compensatory gesture: playing hero with one hand to purchase entitlement to lash out with the other. I’m sure if the recipients of the charitable acts thought for a minute that the casseroles and flowers were a type of “fee” enabling staff to abuse other people’s kids, they would have sent the gifts back. But those who committed the two-faced acts surely wanted to believe that their true faces were the good ones. Dark gray but gray all the same.
And some were charitable from the heart. People have asked us why we didn’t homeschool all along and this is why; but the administration was very careful to keep our children away from warmer and more involved staff.
I’m also sure good teachers would be offended to have their commitment and good deeds poured like a sauce over the bad deeds of colleagues—or propped up like a statue of Lincoln— to hide the smell. People who refuse to acknowledge school abuse on the belief that a blanket defense of schools somehow “honors” good staff seem to miss the fact that good people are not motivated to do good to give latitude to bad and it’s grotesque to cash in that credence for the purpose. A profession is only as noble as the people in it; but a school is a system full of all kinds of people and some of those people mean well even if they can’t always bring themselves to act on it, particularly if they lack solid information.
In any case, when the twins suffered abuse in two separate schools, we found ourselves in a thumb trap that’s gotten tighter the more we struggled to stop it for lack of what the school’s closed and embedded system of legal recourse views as “sufficient evidence”—the solid information that would have helped the undecided make up their minds. Eventually we concluded that the worst parts of the disaster would never have happened if there had been cameras in schools and families had easy access to the tapes.
The existence of cameras wouldn’t stop abuse from ever occurring of course. Abusers may play the odds that some families aren’t involved enough with their children’s education to notice anything wrong, particularly if children are severely disabled and preverbal. But for families who do notice and heed the signs, being able to access the evidence could halt the snowball of institutional retaliation, which in our case would have spared our kids a lot of damage and may have snapped the community out of its torpor.
The situation reminded me of the nursery rhyme, For Want of a Nail.
For want of a nail, the shoe was lost;
For want of the shoe, the horse was lost;
For want of the horse, the rider was lost;
For want of the rider, the battle was lost;
For want of the battle, the kingdom was lost,
And all for the want of a horseshoe nail.
For want of evidence, a private school which abused our children engaged in a cover up which in turn generated bias in a district school which contributed to further abuse and cover up.
For want of evidence, bystanders to the abuse among school staff couldn’t blow the whistle without putting their jobs at risk and with no guarantee that other staff would back them up.
For want of evidence, passive or intimidated bystanders in the community could take the path of least resistance which was then taken as a green light to subject our kids to further mistreatment and discrimination.
For want of evidence, our kids were made ill and traumatized in ways we’re only beginning to take stock of.
And so forth.
There’s another converse “nail” analogy in there as well: “When all you have is a hammer, every problem is a nail.” Because the schools had seclusion rooms, they were going to use them. Because they know that eventually most children are going to object to being placed in a closet, this would automatically necessitate a willingness to use restraints against noncompliance. This in turn would necessitate the hiring of staff who would not object to participating in this or those less likely to blow the whistle. In the end, both schools clearly had the machinery in place to cover up staff abuse, so therefore some staff would abuse. It’s called “instrumentalism”—doing something because you have the tools or means to do it.
Had the systems been built around transparency, things might have been different: Different tools would have been chosen; a different kind of pragmatism would have taken over. The bad eggs—those who adapt too easily to abusive practices— might have been replaced by people who adapt more easily to transparency. In our district, the reverse has happened over the years: anyone trying to meaningfully improve the special education system has been repeatedly drummed out. But with transparency, the chain of events which set off the weakness in bystanders’ characters in our children’s situation might have been altered; maybe some would have adapted to fair play and this would have strengthened their better natures. Unfortunately, the way things happened, those with any scrap of conscience left will know what they’ve become or will be discouraged if they have a future opportunity to blow a whistle on abuse.
In for a penny, in for a pound. Not everyone started out completely corrupt in this situation. Some were clearly hired for their ability to capitulate, but we watched a few lose their souls in the process. They didn’t understand what they were participating in at first. Some believe that, because they aren’t necessarily motivated by rage in the moments when they systematically and by committee decision deny rights to disabled children, it isn’t abuse. But when a child is violated in order to preemptively avoid catalyzing adult irritation, fury or frustration, what’s the difference? Are discrimination and abuse somehow better if done with a smile?
The school’s final physical violation of our daughter demonstrated where schools may still feel most vulnerable—being exposed to the court of public opinion. Those responsible certainly didn’t fear Due Process—where abuse cases are almost always decided in favor of schools. The school didn’t fear the Office Civil Rights, since much of the abuse occurred after the district had been informed that an OCR complaint had been filed. Staff body searched our daughter on National Teacher’s Day, shortly after the Judge Rotenberg shock video was released and only a few days after a story broke in the national media about Stuart Chaifetz, the New Jersey father who wired his son to catch staff verbal abuse on tape. They frisked around in her pants. Then the school removed “no restraint” from both children’s Individualized Education Plans without our consent.
It was obvious the district was afraid of ending up on Youtube or the six o’clock news, otherwise why would they commit such a compromising act and then confess to it in writing? Because they knew worse things had happened to our children and might happen again. They wanted to prevent even the possibility that hard evidence could be gathered. Like a little kid standing on the corner of the carpet under which they’ve swept the broken picture frame, the school gave away the game. I believe transparency would have changed that game, though I’m aware it’s not a simple issue.
A year before our children even started school, I wrote a series about restraint and seclusion out of a sense of foreboding (Here. Here. Here). We’d known for a long time that our kids were at high risk: After years of treating underlying medical issues like metabolic, immune and gastrointestinal disorders, the twins recovered a sort of surface normalcy. As amazing as the progress has been, the close-but-no-cigar kind of improvement led some to place overly high expectations on the twins as if they were fully typical and fully healthy while others only see the labels. To us the children aren’t that difficult; but we know that approaches launched from both over- and underestimations fail. And failed approaches often lead to reduced empathy and mistreatment according to trauma researchers Evan Stark and Anne Flitcraft: subjects’ failure to get better under a particular therapeutic construct is doubled back on the subject as further evidence of either their inherently hopeless state or unwillingness to recover. We’d seen the potential for abuse, but I convinced myself that by writing about the issue—by being the type of person who cared when other people’s children were harmed— I might be able to ward it off.
Admittedly the logic is like that pop-adage of thinking the bull won’t gore you because you’re a vegetarian. Maybe awareness snapped us out of the paralysis a little sooner than if we’d been completely clueless; but when our children started coming home from the private disability school with unexplained bruises and they became physically defensive for the very first time, like most people we couldn’t believe it. It’s what my husband refers to as “the-hamster’s-not-dead-its-only-sleeping!” reflex. I had done the magic incantation of writing about it; we had filed “no restraint” letters with the school and “no restraint” was on the children’s IEPs, so it couldn’t be happening.
I’m just glad I never took a condescending attitude towards families who went through the same because I would have had to eat my own contempt. Speaking of which, one bystander helpfully informed me that because I had “feared” these things, I had therefore “manifested them” with negative thinking, in a sense “asked for it.”
I’ve never been able to figure out if that attitude is just a western Housewives of Beverly Hills version of Zen or a quasi-Calvinist “prosperity doctrine” that predestination and success are an indication of salvation or whatever. Cheap theology and pop philosophy are pretty interchangeable—all part of the gospel according to passive bystanders.
I prefer the spiritual and practical approaches of people who actually do something about disaster. When I was living in Los Angeles, I befriended the parent of a former Willowbrook resident and one of the early advocates who organized to expose conditions at the institution in the 1960’s, novelist Malachy McCourt.
As Malachy had grappled with his own “gray” human nature in much of his writing, he had the ability to call it out when he saw it, even when this set him against dangerous authority. In his memoir, Singing My Him Song, Malachy documented his and his wife Diana’s fight with the institution and details of the hideous conditions and physical and medical abuse—such as the Hepatitis vaccination experiments conducted on residents which were funded by the US military.
Malachy once shared with me his personal serenity prayer for dealing with the darker side:
Lower your palms to the ground to release all sorrow; lift your palms to the sky to accept the bounty of the universe; bring the tips of your fingers together to create a cycle of blessings. And then f*** ‘em.
I never thought I’d be in the same boat as Malachy. At least the company is swell. Someone suggested that this encounter was touched by fate but there’s another, more depressing explanation: autism has risen exponentially since the 1960’s and, in the same way that there’s no such thing as a genetic epidemic, there’s been no “epidemic” improvement in human nature since that time either. 2012 marks the 25th anniversary of the closing of Willowbrook, the New York state residential institution which has become a symbol for American bedlam and abuse towards the disabled that had existed for more than fifty years. In 1972, Geraldo Rivera investigated the facility, citing deplorable conditions. That was forty years ago. It still took another fifteen years and a parade of passive bystanders and capitulators until the institution was finally shut down— the very year the autism epidemic was launched and just a year after Bristol County Probate Court Judge Earnest Rotenberg defended the use of electric shock in a Massachusetts school which became his namesake.
In other words, Malachy could have thrown a rock at a Starbucks in 1994 and hit someone who would have ended up in the same boat as him in 2012.
So, many apologies to fatalists but I don’t believe we were “chosen.” I think there can be mitigating factors in all these disasters such as genetic susceptibility to an increasingly toxic environment; or the fact that abusers—or toxic industries— can’t resist violating a boundary, will retaliate against anyone who advocates for victims and can count on passive or corrupted bystanders to help them get away with almost anything.
1001 philosophies aside, I don’t know if our daughter will ever feel safe again. I’m not sure I will either. On the kiddy train ride at the zoo this week, she pirouetted her head each time the train went around the tracks so that she never once took her burning, worried eyes off me as I stood by the gate. Some autism parents struggle with chronic anxiety as part of the condition but to us it’s a sickening regression stemming from a series of unfortunate events.
In her short life and even shorter time in school, our daughter has been dragged around by the arms by school staff for refusing to eat lunch, kicked in the tailbone and injured by an afterschool program aide for going “boneless,” repeatedly shoved into her seat, assaulted for taking a toy, subjected to an unconsented strip search by private school staff engaging in a cover up, repeatedly placed in a cinder block closet for whimpering or crying and denied an education for more than 100 days by the district school. Then there was the second unconsented strip search performed the day the district learned that the Office of Civil Rights was not going to investigate the first.
The mistreatment has impacted our daughter’s health, sometimes in strange ways. The first day our daughter reported being placed in the seclusion room in the district school, she developed a rash on her face and hands which progressed to a chronic allergic eye infection which she’ll have for the rest of her life. Chronic moderate dehydration (4 to 12 ounces of fluid in a seven hour period rather than the recommended liter) during the school day led to reflux. Though staff were scared into correcting the hydration issue when our daughter began openly reporting nausea and constipation so painful that she was crying in the bathroom, it was too late. The cycle led to a spiraling gastrointestinal crisis that eventually landed her in the hospital.
There was also psychological abuse: Our daughter was forced to write a letter of apology to a private school teacher who assaulted her. She complained to us of being asked prying questions by staff. She reported being instructed “not to tell” mom and dad while district staff normalized unconsented body contact—while the school explained to us that hugging between students and staff is frowned upon. The same staff that performed the second body search attempted to manipulate our daughter into providing them with a rationale for the violation by repeatedly asking her if her clothing “itched.” Our daughter protested this to us: “But I told them my skirt wasn’t bothering me!” And staff attempted to psychologically “acclimatize” our daughter to being placed a scream room by stocking the windowless closet with castoff toys. Our daughter dubbed the beat up seclusion room Arthur doll, “Mr. I-Have-Broken-Glasses.”
And then there’s our son, also in psychotherapy because he couldn’t stop talking about death and disaster from witnessing the assault on his sister and after being assaulted himself. He was restrained and injured on World Autism Awareness Day by a school aide who complained that our son was “standing too close to other students.” Apparently she didn’t do it with a smile. Our son reported the event the same day: “She was so angry. She pushed me and she hurt me. And I cried. She was so, so angry.”
If anything, the aide might have suffered from preemptive imaginings of a breast-grabbing disabled male teenager terrorizing the halls at some vague point in the distant future. Essentially our son was corporally punished for something that hadn’t happened and so was our daughter. Our daughter was groped to protect “student privacy” and our son was assaulted to protect personal space. And to think we moved to this town to escape crime in the big city.
Aside from her overly zealous defense of physical space, the aide also allowed our son to become chronically dehydrated for more than a month. He took it even harder than his sister. The practice is actually typical in schools—if children drink less, they need fewer bathroom breaks which simplifies the schedule and reduces adult responsibilities. But the bar for dehydration is dangerously low for children with many types of metabolic disorder and damage can set in long before typical signs appear. As dehydration sets in, the more nauseated and confused a child might become and the less they want to drink. We had only a theoretical understanding of this because we’d never let things get to crisis level, but we repeatedly warned staff of the risks.
Unfortunately the warnings, emails and reminders were met with a certain amount of cynicism: after all, we’d been marked as spurious reporters of abuse, so our medical documentation may have been viewed as less than credible. Nothing changed even after our son began reporting pain on urination during school and we pointed this out as a warning sign. A day after the assault, our son ended up in ER with blood in his stool, then had a first seizure from what his neurologist now suspects was catabolic stress.
Because of the combination of bruising and bleeding, certain concerns arose among ER staff when our son reported having been abused by a school aide. And so our eight year old, who still has most of his baby teeth, was put through a rape exam. We didn’t think it was likely but it was a legally based procedure and we couldn’t protest it. I don’t know how our son will be able to process that moment when we still can’t.
And according to some views, we “asked” for all of it? Like a preschooler who believes bad thoughts can cause parents to divorce or a jetliner to fall out of the sky, some bystanders apparently believed our negative thinking caused perfectly upstanding people in perfectly wholesome institutions to commit abuse and neglect and to cover it all up. Had we known the power we possessed, we could have tried our hands at the stock market or bending spoons on Pay-Per-View.
The Office of Civil Rights investigation has gone the way the Department of Education’s internal administrative processes usually do—like 1000 years of German humor. Our vast negative mental powers seem to have magically rendered this once perfectly democratic and effective arm of educational justice into a paper tiger. But OCR and state board complaints are usually the only affordable avenues open to parents seeking redress for abuse. Police and child services often claim no jurisdiction in schools and rarely investigate. In our town, the district principal throws a yearly pancake breakfast for the local police department.
Then because the US Department of Education has carved out elaborate legal protections for schools, families in most states must “exhaust” the internal kangaroo court system of Due Process— which can easily mount up to fifty thousand dollars in rarely reimbursed legal and court costs— and furthermore win before being allowed to take their case to civil mediation to weigh the case’s merits. Fewer still will make it to a jury trial, but only if they have rock solid evidence.
It didn’t seem to matter to anyone that our children are able recount exactly what had happened to them. Those were actually the only tapes we had as far as evidence—video of our kids demonstrating and describing the abuse directly after the events. Regarding the trial of Jerry Sandusky, recently convicted of 25 felonies and 20 misdemeanors for sexual assaults committed on boys under the care of his foundation, Pennsylvania Attorney General Linda Kelly said, "One of the recurring themes of the victims' testimony was, ‘Who would believe a kid?’ And the answer is, ‘We here in Bellefonte, Pennsylvania, will believe a kid’…A jury of 12 people in Bellefonte, Pennsylvania, most definitely would and did believe a kid."
But rock solid evidence, in the eyes of most courts, does not include the testimony of a disabled child, even if the child is verbal. And then they’d better be a Roman orator. An Assistant District Attorney told one family we know that they could not press charges for staff assault because the child in question wasn’t sufficiently verbal to testify, though his bruises certainly spoke volumes.
So all told, for many families it’s Due Process or nothing. Schools have been known to drag out Due Process or come after families for legal reimbursement in order to bankrupt them; and hearing officers, again, rarely find for families in cases of physical abuse. In the case you take the fight too far, it doesn’t matter how much money you have if you live in a district which matches your means because the school has more— courtesy of taxpayers.
Again, OCR almost invariably claims “insufficient evidence” of civil rights violations with only internal oversight to appeal decisions. In our case, OCR outright rejected the portion of our complaint for which there was the most solid evidence— the first letter from the private school essentially confessing to strip searching our daughter without consent. OCR claimed that the school had a “right” to wield its “mandatory reporter” status in performing the violation following reports of abuse by its own staff. OCR also stated that strip searches of children were “unlikely to deter a reasonable individual from continued advocacy” and did not result in “lasting harm”—even if the purpose of the strip search was exposed as a cover up when staff denied the existence of visible injuries that had been documented only an hour before by an independent mandatory reporter.
Is that what’s fashionable in education these days? I’m not sure most families are aware that schools are claiming this kind of territory. OCR essentially concluded that most people would accept having their child groped, yet the public has been in an uproar over children being body searched in airports and the Supreme Court ruled in 2009 that school strip search was unconstitutional.
The first strip search was in 2011. Our daughter was frisked again in May, 2012. OCR’s acceptance of the earlier incident was apparently taken as a green light by the district to repeat the violation.
Since the school attorney worked for OCR less than two years earlier, many hearing the story muttered, “BRD” (back room deal). We don’t know if this is the case; all we know is that our daughter was harmed. A popular modern concept is that young children only know an event was traumatic or degrading because of adult advocates’ responses, but I think this is mostly a garbage rationale from questionable sources. Our daughter knew the whole thing was horribly wrong before anyone asked her for details.
After the second physical search, our daughter crashed. At first she wouldn’t tell us about the chronic reflux that followed nausea during the school day, which led to staff feeding her potato chips in place of the lunch we sent with her—all for want of enough to drink. We had no idea why she kept sneaking off to brush her teeth six times a day, so we assumed the nagging cough and sore throat were viral; but her decline in health did get her out on medical leave. As it was, she became fixated on her increasingly distended belly—the place where staff were groping around in an effort to find the “wire” they thought explained how we knew so much about the abuse that had already occurred. Our daughter will now suck in her belly or stare at her stomach in the mirror with a sad face. It’s possible that staff had said something critical while groping her, though it’s probably more likely the violation itself made her dislike the part of her body that was violated. A layer of shame has been added to illness and distress.
The reflux progressed to an all-out motility crisis with recurrent high fevers and persistent vomiting. She ended up in ER and on an IV after she stopped eating for a week. Her skin became so translucent and mottled you could see every blood vessel on her body like an Anne Rice vampire and we put her on seizure watch like we had her brother. At around three AM one night she sat bolt upright, sighed and said, “Oh, I didn’t die yet.”
Our daughter had been taken out of school in the nick of time: had she been physically restrained, she could have easily aspirated vomit and it could have been lethal.
As futile as the process can be, the OCR investigation may have been all that was standing between us and the classic next step in the school retaliation dance: spurious and retaliatory charges of truancy for removing children from school following abuse reports. No, we weren’t at the bottom of the barrel of monkeys yet. From the Special Education Law Blog:
Retaliation can be defined as “using official resources to ‘punish’ parents,” and it can take a wide range of forms from refusing to respond to emails or return phone calls, not allowing parents to view records, or continually canceling school meetings and conferences. But sometimes the retaliation can be more sinister. Anecdotally the internet is filled with stories of parents who claim their school districts have reported them to child protective services, filed truancy charges against them, or had restraining orders imposed on them, all as the result of their advocacy on behalf of their children.
Almost no one has immunity to these particular forms of retaliation and it’s happened to so many people we know—some of them lawyers, scientists, members of the military. We were afraid to pull our kids from school until they were sick enough that we had no choice. It all goes too far too fast.
In our hearts we knew that community support would go a long way to altering the system and protecting our children; but from experience we also knew that the deck is stacked in that sense. The school ultimately has everyone’s kid hostage. For one, typical families might not even be sure they want their children educated with the disabled after hearing so many news stories of rampaging mentally disturbed teens. The rise in children—especially those with disabilities— being prescribed drugs with black box warnings for violence and suicide feeds these fears; but most people remain unaware of the connection between the drugs and school shootings, stabbings and mayhem as they pop Prozac themselves at a rate of 1 in 10 to tamp down that unsettling sense that all is not well. And it really isn’t.
Then disability families are often forced to grovel for amnesty within their communities as they do the dangerous dance of lobbying for services, supports or especially inclusion while still being “likeable” within a commonly biased school culture which comes up with nicknames for involved parents like “helicopter mom” or “blanket parent,” etc. Some forge an uneasy peace but as a result might be loath to put that slim margin of “protection” and “likeability” at risk. Even recognizing that a system is a protection racket or that some individual administrators and staff are criminal could jeopardize that fragile niche of safety. If you think something you might say it and if you say it you will lose community support. Then you’ll be like us and no one wants that. It’s better not to think the unacceptable as Edith Wharton wrote in The Age of Innocence:
In reality they all lived in a kind of hieroglyphic world, where the real thing was never said or done or even thought, but only represented by a set of arbitrary signs…
Furthermore, in Due Process proceedings, hearing officers from their ivory tower are reportedly inclined to view parents’ grass roots organizational efforts as further evidence that the school is righteous and right and parents are all nuts. It’s much safer in the end for bystanders, especially vulnerable bystanders, to make up reasons why any family who has inconveniently gotten into trouble doesn’t deserve support.
…the way people who dreaded scandal more than disease, who placed decency above courage, and who considered that nothing was more ill-bred than "scenes" except the behavior of those who gave rise to them.
Though it might be harder to justify abandoning the cause of an abused child, that pang of conscience can easily be ditched by claiming parents fabricated the abuse to begin with. Character assassination is part of the whole school abuse program, like a set of psychobabble prix fixe menu options. If a teacher restrains your child, you are deluded. If your child is injured, you are Munchausen-by-proxy. If you protest the retaliation, discrimination and lack of social support, you are deluded, Munchausen, suffering from paranoid personality disorder, generally annoying and a danger to public order, etc.
I knew all this when I started halfheartedly eyeing the parent pick-up for signs of integrity. I know how lucky we are that something “positive” about our lives led us to expect to find the good in people. Still, I had a sinking feeling and I’m sure I reeked of futility. A little more Wharton:
He shivered a little, remembering some of the new ideas in his scientific books, and the much-cited instance of the Kentucky cave-fish, which had ceased to develop eyes because they had no use for them. What if, when he had bidden May Welland to open hers, they could only look out blankly at blankness?
For one, we were new to town when we had kids, soon went into crisis over their health and hadn’t really spent enough time paying the social piper in our town— though of course membership to the tribe requires adhering to certain rules of conduct which we could never quite manage. Sample meet-and-greet after the children began regressing:
Me: Hi, it’s great to meet you too... Oh, pardon me while I pry open my speech delayed toddler’s mouth to scrape out that piece of donut you just gave him while he screams like he’s being killed…
And when we ignored the eye-rolling and did what we had to do? Or worse, tried to explain? Every autism parent is already under suspicion of “having some of the traits”—e.g., “mind-blindness” and “impaired ability to read nonverbal social cues.” It’s really fascinating how, in the Age of Autism, anyone irritating the status quo risks being labeled. But here’s the thing: Yeah, we understand the nonverbal social cues. No, we can’t heed when it requires us to sacrifice our kids in exchange for social decorum.
Though we’ve had some very important support from friends, family, doctors, therapists and advocates outside the immediate community where we live, without local support, we were cooked in the immediate crisis. Except for one local parent who decided she didn’t want her children traumatized by having to witness peers being dragged off to scream rooms and all that this would entail, no one was willing to confront the school and the “nonverbal social cues” I encountered were mostly glassy looks, averted eyes and no questions. Were there injuries? Are there medical reports? Can the kids say what happened?
But those who didn’t want information they might have to act on didn’t ask for it.
It’s been really hard to take. My husband was blindsided by some song on the car stereo about a neglected child and kept bursting into tears for six hours. It went on for so long that he started laughing at himself for falling apart over radio flashbacks but still couldn’t stop. No, he doesn’t drink and he’s not imbalanced: the situation was that bad.
His family escaped the military dictatorship in Argentina in the 1970s and he’d seen it all before. Though Argentina went from an open to a closed society in rapid order, many human beings adapt to fear very quickly. People just like all of us. Many will rationalize until they’re stepping over corpses—or letting their children step over corpses.
So the dark things we were seeing in small town USA—abuse, corruption, lies, intimidation, cover-up, apathy— weren’t really all that shocking in the larger scheme. It can and has gotten so much worse, though that’s not reassuring. Experience in that sense is both helpful and unhelpful in dealing with disaster—like being awake but paralyzed on the operating table while a surgical team is in the process of botching an operation. If you’re powerless in the moment, what’s the good of having perspective?
Then again, nothing really prepares you for certain things and we were still shocked, maybe especially by the apathy. But there was an explanation for it. The day after asking at the school about the seclusion room, the one parent who spoke up found her house being slowly cruised by a procession of police cars. She laughed it off, saying it was just a few buddies paying into the pancake fund and refused to back down. If blank looks weren’t discouraging enough, the idea that the radius of harm could widen and impact other people’s children was the ultimate dissuasion. We stopped reaching out.
But what was interesting was how this one ray of sunshine in the community—a family who made inquiries about a seclusion room out of concern their children could end up traumatized witnesses—caused such a storm: the school suddenly announced at an IEP meeting that “We are not a seclusion school.”
Since when? The same windowless cinder block room has been in use for at least fifteen years. Sadly the sudden shift showed that bystanders did have the power to change things after all.
It’s admittedly a big switch for the district to go from using seclusion as an open threat to distancing the school from that identity. But does the fact that roaches scatter when you flip the light switch mean the kitchen is now roach-free? Meanwhile the assaults against our children remained unacknowledged and the retaliation snowballed until both children were ill.
Maybe this new stated “no seclusion” policy, if it isn’t merely for show, might help some children in the long run but it would not help our children who’ve been marked as targets, have lost ground in their physical recovery and almost an entire year of public education. No “get better” cards were sent from our children’s classes. No one apologized; and the staff who committed the abuse and violations, organized the cover up and retaliation and jeopardized our children’s health kept their jobs.
We knew there were staff who had no idea what happened or didn’t approve. Some sought our eyes and smiled agonized smiles, as if to say, “There was nothing I could do!”
I suppose some could have done a kamikaze protest, blown the whistle and quit but what whistle would they have blown? The staff who directly committed or witnessed the abuse were denying it and the administration would back them up. We knew there were innocent people in the community who would have been outraged had they understood what went on but perceptions were being “apathy-engineered” through a certain buzz which reached us via various channels. The gist of it was basically, “No, no, that family has a history of causing trouble, it didn’t really happen, don’t get involved…”
I am like a train
rushing for many years now
between the city of Yes
and the city of No.
My nerves are strained
between the city of No
and the city of Yes.
Everything is deadly,
everyone frightened, in the city of No.
…You’ll get lots of good advice in it — like hell you will!—
not a bunch of flowers, or even a greeting.
Typewriters are chattering a carbon copy answer:
~Yevgeny Yevtushenko, The City of Yes and the City of No
Another bit of cheap theology that people like to spout in the face of your disaster (or their own success) is “Everything happens for a reason.” It’s just a way to say, “No.” No one ever qualifies this kind of banality because it’s a new age euphemism for “It’s God’s will.” But the bald form sounds unfashionably puritanical— the kind of simplistic messianic/divine wrath binary that get laughed out the first week of divinity school and has a perfect parallel in “it’s genetic.” It’s a way not to give a damn.
Perhaps there were “reasons” these things happened to our children in particular but none were good reasons or ethical reasons. The only lesson we could draw from the experience is what my father told me just before he died, “If anything happens to your children, you find out what kind of society you live in because you become a hostage to it.”
And what kind of society do we live in? We could always turn the cameras on, demand access to the footage and find out. We could find out why, at minimum, three individuals with special needs are dying in schools and institutions every week from restraint and seclusion in the US. Or we could wait thirty or forty years until today’s students run our country to discover what they’re learning now as they unleash those lessons on the population.
As Lincoln put it, “The philosophy of the classroom today will be the philosophy of government tomorrow.” It’s easy to guess what that future philosophy will be if children are now learning that their inconvenient peers can be stuffed in closets, shuffled off to institutional schools and out of sight, injured or even killed while adult authorities lie and rationalize and communities turn a blind eye. For want of evidence that no one wants because it would show something we don’t want to know about ourselves and our culture.
Cameras are not the only solution in special education since not every problem is one of transparency. But in states like ours, where laws are already on the books to protect students from abusive practices, transparency in service to enforcement is the crux.
Are cameras in schools the “nail” in this analogy? No, cameras are the hammer. The nail is the truth. I wish to God it didn’t need a hammer to be driven in.
Adriana Gamondes is a contributing editor to Age of Autism and one of our Facebook administrators. She lives in Massachusetts with her husband and recovering twins.
Victoria- your account moves and chills me to the bone. How many parents in small towns across the country who once made the "mistake" of thinking they could fight for their kids who now live with their heads down and drapes shut tight?? I'm sure there is a whole population of families living in fear of institutions and thinking they're alone. But the thing about a problem this pervasive is that the isolation is an illusion-- there really are so many of us and we'll eventually each other.
Posted by: Adriana | September 08, 2012 at 11:59 AM
There just aren't any words as eloquent as yours. I did not fight them on their turf, I keep my head down because my kids have suffered too much already. We homeschool quietly and hope no one notices us. I just had to explain to my daughter the other day about how to answer those nosy questions when we are forced to go out during the day. "Is school out today? (with the raised eyebrows) I am dually ashamed and proud that she understood me well and the last time a prying question came along she just smiled and shrugged -instead of the dreaded "I'm homeschooled!" announcement that makes me want to hide in the house with the drapes shut tight. The problem is that either way I still hide in the house with the drapes shut tight. I thank you from the bottom of my heart for your advocacy. As a disabled single-mom, and a home-schooler in a small backwoods town - I am unable to help more than to share your story on Facebook. I will do that.
Posted by: Victoria Meyers | September 07, 2012 at 09:46 AM
Thank you for commenting-- it's horrifying and the nicest kids are the ones who get the brunt. A quote from Oscar Wilde about school masters: "Men among boys and boys among men." The individuals who psychologically and physically abused your son, and the teacher who cried over her hat are sick overgrown infants. I wonder if extracurriculars should actually be civic, not held hostage through the school system.
Posted by: Adriana | July 28, 2012 at 12:17 PM
@Adriana - I hate to share this, but it is not just spectrum kids who are put in danger by our schools. During my son's eighth grade year he was dragged into a closed-door meeting with all of the 8th grade teachers and no representative for himself to be intimidated for something that was a misunderstanding (he hurt a teacher's feelings commenting on a hat she was wearing that she had worn previously for silly hat day, saying "I see you wore your silly hat today"). At a football game when he missed a block and the student that was tackled was injured, a coach suggested that maybe he wouldn't miss blocks anymore if he knew what it felt like to get a concussion. Two boys took the coach up on it and slammed my son head-first into a bus window, giving him a concussion.
Feedback about my son at any time from school officials, teachers, administrators is always positive about who he is - friendly, helpful, kind. He tends to be flaky, avoid doing school work, etc., but also is very bright according to most teachers. Yet these same teachers still bullied him (a group of adults against a 13-year-old is completely uncalled for) and suggested his bullying. If my son didn't love playing football so much, he would be being home-schooled at this point. I no longer believe that I can trust adults who choose education as a career to behave responsibly and keep the students' best interests a priority.
Posted by: Momma J | July 27, 2012 at 04:08 PM
Adriana- Thank you for sharing your story, horrifying though it may be. The apathy from other parents (I think apathy is not a strong enough word because it's more active than that) that you describe was the most shocking part for me to deal with when the sh** hit the fan with our school district and my son. I have had people to my face (or on my facebook wall...lol) tell me that I was the problem because I was so "negative" in my words/actions and the SD was amazing. I felt this was worse than all the games the SD had thrown at me. We are moving- we've lived here for 10 years, I have a tween, my husband is potentially damaging his career- we just really couldn't take it anymore.
Posted by: Kristine | July 20, 2012 at 10:51 PM
Areed. I read this and just felt sick. Parents in MA actually believe that seclusion (the centers love to call it "time out" to make it sound less offensive) is a good thing. Don't they question WHY this isn't right and how this is abusive and doesn't look at the lack of communication of the child which drives behaviors? This mother is supposedly an advocate in Massachusetts that parents look up to. God help the kids in that state is all I can say!
"Here is another thing that helped, and you must read this without judging the Swami. Nat’s school had an idea which was to use a time-out room for 1 minute to help him decompress when he became aggressive. This way they could avoid restraining him. It was a small room with a small window. I cried when I signed the consent, but I felt that we should try it and see how he responded.The time-outs were fine for him; he could be alone and away from whatever/whoever had set him off. It served as a cool gust of air in a hot room (I think).
Time-out rooms are not legal these days, but I think that Nat benefited from the quiet separate space for those brief intervals. They were not used as punishments; they were used as a distancing device. I think that’s okay. I think it did him good to experience that he could be calm rather than aggressive. Would I do it this way, knowing what I do now? Probably not. Now that I know how much he wants to communicate (but on his terms), I would have worked harder trying to teach him words and typing emails."
Posted by: Lea | July 20, 2012 at 05:40 PM
Adriana-this is not uncommon in the state of Massachusetts at both public schools and private centers. It is one of the worst states for educating autistic children. Violations are everywhere and the DOE could care less. It is an utterly disgusting state when it comes to the treatment of kids on the spectrum. Seclusion and restraint are regularly accepted in the private ABA centers and parents are brainwashed into thinking this is just fine. Scary.
Posted by: Mass is the worst | July 20, 2012 at 04:24 PM
See Shocking Brutally Violent U.S. Public School Spanking/Corporal Punishment (Sexual Abuse) Injuries to students Kindergarten through Twelfth Grade at YouTube Video Trailer for Documentary "The Board of Education" by Jared Abrams http://youtu.be/0vt4v7KsFi8
Many students hit in schools have disabilities like Autism http://www.hrw.org/news/2009/08/11/stop-beating-students-disabilities-schools.
US Lawmkers Turn Blind Eye to Immunity for Blatant Abuse of Students K-12 by Mandatory Child Abuse Reporters Public School Teachers Coaches and Administrators 2008 Report "A Violent Education" by Human Rights Watch and ACLU http://fb.me/VJqjF0kQ
When school employees paddle and injure students under the guise of discipline they are immune from criminal/civil action.
LISTEN: Children Speak Out on SCHOOL Corporal Punishment/Paddling to inflict Pain Punishment http://www.aclu.org/human-rights/podcast-children-speak-out-corporal-punishment
19 US states allow taxpayer funded school teachers, coaches and administrators entrusted with the care and education of children to hit them with no safety standards : AL, AZ, AR, CO, FL, GA, ID, IN, KS, KY, LA, MS, MO, NC, OK, SC, TN, TX, WY, Some state laws do Not require parental consent or notification for children to be hit in school!
Spanking can be sexual abuse http://nospank.net/101.htm.
Study: Physical Punishment Linked to Mental Disorders http://usat.ly/LYriNS#.T_MRoz1Zo6A.twitter
Cost to Abolish School Corporal Punishment $0.
Federal Bill to End School Corporal Punishment at http://www.change.org/petitions/support-h-r-3027-to-end-corporal-punishment-in-us-public-schools.
Posted by: Julie Worley | July 20, 2012 at 01:04 AM
Thank you everyone for the thoughtful responses. I've lost count of how many families we know who've gone through this or much worse. Just learned of a child put in a closet in a neighboring school who went into diabetic crisis-- it never hit the papers. There's a life-is-cheap monster that's getting fed more than ever in the US that has to be stopped.
Posted by: Adriana | July 19, 2012 at 08:11 PM
I read the article. It gave me a lot to think about and was very interesting to say the least. I was wondering though if we have any source or agency documenting the abuse and death with our special needs population in schools and institutions? The one you listed was from 1998
Posted by: Evelyn Delgado | July 19, 2012 at 03:21 PM
Thank you for writing this. As our legislators continue to not address restraint and seclusion as a priority more children are being harmed daily. They are then victimized twice, not only by those who are suppose to teach them, but those that are suppose to obtain them justice.
As parents we too are then subjected to retaliation and humilation for only what any parent should do....protect their children.
We as a community can make a difference and share this story and ask why. If we see a child being subjected to any type of abuse it needs to be reported. If you know a "scream room" exists, report it because most won't pass local fire marshall standards.
We also need to come together as a community and support those that have experienced what Adriana's family has. We need to attend school board meetings, file state complaints and OCRs and shed light further on the abuse that is taking place.
It is shameful that more is spent on ensuring professional baseball players don't use steroids than addressing the abuse of our children in their schools. Shameful.
Please share Adriana's story and the stories of others and get involved. We cannot let this continue and we cannot let parents, who are only trying to ensure their child's safety, be subjected to the backlash.
In closing I feel we have to realize that is allowed to happen to our children, it will be worse when they have less protections as adults, and after we are gone. We can change that. Adriana has by writing this piece. Let's support her by sharing it and vowing to become involved in this effort to protect all of our children.
Posted by: Carolyn | July 19, 2012 at 02:21 PM
I wish I had solutions for you. I wish every talking head would read this. I wish your babies mistreatment would be the last for any child anywhere ever. I wish...I wish...I wish.
This writing will make a difference for some child somewhere, I know it. Pass it on everyone.
Posted by: KFuller | July 19, 2012 at 01:25 PM
I'm horrified and sorry that your children were subjected to so many painful, dehumanizing and traumatic acts. The location and shape of the bruises speak volumes. What business do these school workers have getting paid to handle children like bags of chicken feed?
It's profoundly unfair that now you are educational refugees with a paper trail that favors the perpetrators. And it's infuriating that so few viable options are available for victims of abuse at school.
You hit the nail on the head regarding compensatory gestures. Seems like that explains public health policymakers' casual attitude toward vaccine injuries. So many lives saved, so they're entitled to lose a few. Like the Minnesota Department of Health workers who at an autism meeting complained that local Somali families should feel grateful rather than upset.
School surveillance cameras -- bring them on! In this instance a little Big Brother treatment is a good thing.
Posted by: nhokkanen | July 19, 2012 at 01:24 AM
It's hard enough dealing with the many medical issues, the physical challenges, the particular food allergies, and the many other things that our kids need to cope with BUT then harm at school -- it's horrible!
I am so sorry for your beautiful twins and your family. Being a teacher at a good school, I am sickened by this. There are good people at schools but there are also bad schools that hide bad employees and that must end.
Thank you for writing about this as it must be exposed as the punishment, sadism and harm that it really is.
Posted by: Teresa Conrick | July 18, 2012 at 11:02 PM
You have a lot of courage and whoever they people are that are in charge and that work in your childrens school district are sweating today after reading this, if they are not they should be!
Posted by: Lisa B | July 18, 2012 at 07:58 PM
Aside from fear, they count on us being overwhelmed and isolated. I'm not afraid of them - but I am overwhelmed and isolated. I don't really pray, but I have a list of folks that I ask the universe to pay attention to. You guys are on it. I feel like that is all I have right now, I am drained too. But I will never avert your gaze b/c of them. I am thankful you wrote that R&S series - it likely saved the twins lives. wow. It manifested saved lives not misery to you.
BTW - the fluoride readings in this town are sky high b/c of the naturally occurring fluoride in the granite and the helpful fluoridation.
Posted by: Cathy R | July 18, 2012 at 06:31 PM
very thought provoking..and your absolutely right about the nail, I to am a outspoken advocate for my son and others on spectrum..there is much unjust ..i find taking back my ,our power, from these helping agencys i say that with sarcasm, ive stopped letting them anywhere near my child, it was the 1st relief I have felt in ages, I am sorry for the abuse your family has had to endure..you are a eloquent writer and one can tell its from the heart. your story will save others! blessings candace
Posted by: candace | July 18, 2012 at 05:31 PM
It is forever necessary to talk about the derelictions and abuses of power - if we stop then we have really had it, although who knows what retribution might come. 'Speak truth and shame the devil.' I have done my best but I have never stood up like this. Adriana gives me faith in humanity.
Posted by: John Stone | July 18, 2012 at 04:04 PM
Thank you for the kind words, everyone. I write about it in the hopes others will only have to read about it.
Don't worry about cliches; scripts exist for when something is unspeakable. It's the blame and apathy all our kids can do without on top of everything else they struggle with. Peace.
Posted by: Adriana | July 18, 2012 at 02:59 PM
Donna-- Keep that last shred. I do because of people like you. ~Adriana
Posted by: Adriana | July 18, 2012 at 02:49 PM
Adriana, even writing about such a painfull personal experience, your skill as an eloquent thought-provoking writer comes through.
I don't know how such a broken system can be fixed. But a wall of shame seems in order.
Posted by: samaxtics | July 18, 2012 at 01:52 PM
What Amy said.
I have no words. Just grief and sorrow and outrage over what your family - and all of our children - have had to endure. I've just lost what little shred of faith I had in humanity.
Posted by: Donna L. | July 18, 2012 at 01:38 PM
My son was recently bullied by an ABA therapist in my own home.
We do not approve of the lack of help in our local public school. We home-school. I would never let my nonverbal child go to a public school , and not be able to tell me that someone hit him.
Autism is extremely frustrating, and for those that do understand- it can get hairy at home. For those that dont have to deal with it everyday- they can become aggravated, and lash out- and thats why we dont send my son to public school. he is thriving at home.
Posted by: taramcmillan | July 18, 2012 at 01:24 PM
The courage to write this is awesome - the term has become debased but I mean it in its pre-debased form (something way beyond a good job).
Posted by: John Stone | July 18, 2012 at 01:16 PM
Wow. I'm not sure I could say anything that doesn't come off as just cliche. I am horrified about how your family and your children have been treated. My heart and my prayers are with you.
Posted by: AmyinIdaho | July 18, 2012 at 11:25 AM