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Best of AofA: The Lever of Love: Why Families of Disabled Children Need a Legal Defense Fund

Posted Dec 01 2011 12:00am

Heart shaped bruise a gamondes We ran this post in November, it seemed relevant to bring it back as we invite you to send your restraint and seclusion stories to Senator Harkin in the post above.

By Adriana Gamondes

While a system of holding people in hostage is as old as the oldest war, a fresher note is introduced when a tyrannic state is at war with its own subjects and may hold any citizen in hostage with no law to restrain it. An even more recent improvement is the subtle use of what I shall term “the lever of love” (applied so successfully by the Soviets) of tying a rebel to his wretched country by his own twisted heart strings.  ~Vladimir Nabokov, Bend Sinister

In Bend Sinister, Nabokov’s protagonist, Professor Krug, refuses to deliver a speech approving the new dictatorship, which of course promotes the greater good.  Like in Heller’s Catch-22, all they want is for him to say he likes them—and to be used like a donkey thereafter. Krug won’t comply, though his colleagues have already fallen in line. The regime’s henchmen set about playing a diabolical game of chess to isolate and demoralize Krug and bring him to heel; but the regime plays badly. They’re idiots. According to Nabokov, who survived a few dictatorships, the purveyors of tyranny always are, but that’s really beside the point if they still manage to destroy everything you ever loved as they lurch towards self-annihilation.  First Krug’s wife dies mysteriously in a medical disaster, though Krug is too grief stricken to understand the message. Coercion is useless if the subject doesn’t suspect they’re being coerced. They imprison Krug’s friends one by one, but still he won’t be moved. Finally they figure out his compliance could have been forced from the start by taking his eight year old son. The kidnapping is bungled, the child is accidentally killed and Krug goes mad. 

From the moment our twins were diagnosed four and a half years ago, it’s as if we’ve been strapped to a set of train tracks with the train bearing down on us at a snail’s pace, not knowing how to get out of the way. Other times it feels like a board game from hell with no firm rules or reason—you’re just always in a panic that you’ve made a wrong move, said the wrong thing. Check.

One risk we knew came along with the diagnosis was institutional abuse. As soon as your child is labeled and you try to seek any form of help, you’re subjected to all kinds of officious do-gooders who would otherwise never have had access to your family. There are good souls in the helping professions, but it soon becomes clear the unfortunate types have more power than they should. My husband also survived a few dictatorships before we met: in unjust states, they mess with your kids. It’s part of the game and why some are drawn to it. When they have your children in the balance, integrity and standing up for principle can become liabilities, which has a delicious equalizing effect for worms. 

 “Awareness” isn’t a coat of armor.  You might understand risks and even nip a few in the bud if you’re clued in, but you may not be able to stop certain things from happening in the first place, not in the current system. Everyone tells themselves bad things won’t happen to their child; but except for those who can afford to homeschool—and even these families live under a certain gun— when a family sends a child to school anywhere in the US, particularly a child with any kind of disability, they are depositing their child on foreign soil, a place with abridged constitutional rights and a third world system of justice.  I don’t think it’s even the third world anymore—it’s the fourth world:  Disability land.

The marks my daughter came home from school with in the middle of September weren’t much—a small imprint on the inside of one arm, a bruise on her forearm and what looked like a rug burn near her elbow.  But according to the school, the marks don’t exist, and that’s what turned them into gaping wounds. The school’s version of events:

Additionally, Mrs. G reported that [child] has marks on both arms, which she attributed to [child’s] having been “scooped up off the ground” by lifting her under the armpits.  With verbal permission to Dr. X from Mrs. G, school nurse completed a brief examination.  Mrs. Y brought [child] to the school nurse’s office at the end of the day on X/XX/11.  With Mrs. Y present, the school nurse viewed [child’s] upper torso, upper back, entire upper extremities and axilla.  The school nurse office visit report noted no areas of discoloration, swelling, or redness.  [Child’s] skin was noted to be quite translucent around the areas of the veins.  A copy of the report has been placed in [child’s] medical file and a copy is attached to this report.

During the meeting, Mr. and Mrs. G questioned how [child] would have arrived at such a specific description (“scooped up off the ground”), so Ms. Y  asked if [child]  has witnessed anything of this sort in school.  The only thing that can be identified is a movement (very much like the action demonstrated by Mr. G) that occurs several times a day with one of [child’s] classmates who needs assistance to transfer from one position to another due to physical disability.  [Child] sees this on a daily basis.

I’m always amazed at how school apologists make excuses for school conduct when the schools are so skilled at doing it for themselves.  For the record, though we will celebrate the day she lies as a great milestone in recovery, our daughter doesn’t lie. She has eidetic memory and if an account clashes with her mental videotapes, she can’t let it go. She’s never fabricated or imagined an event in her life, won’t even frame her brother for stealing a cookie. She once had exaggerated fear of cars, but never actually hallucinated that a car jumped the curb and the fears turned back into reasonable caution when her fever broke. 

No one at the school was qualified to diagnose her with delusional mental illness on top of high functioning autism. Unless the child in a wheelchair in our daughter’s classroom is routinely dragged around the room and forcibly made to walk by being shoved, the only “model” for what our daughter reported was something that happened to her. The photograph above was taken about three hours before the unconsented strip search at the school, which found our daughter miraculously unblemished. We never gave permission—and never would—for her clothes to be removed. The school put it in writing that we reported marks on her arms. There was no reason to strip her. It was retaliation—part of the game. As for the marks? Optical illusions.

Aside from the ironic heart-shaped bruise, being forced to write an apology to the person who reportedly mistreated her was a nice touch.  It’s like kiddy rendition—abuse, forced confession, cover up, foreign soil.  She took a toy. That never happens in autism. Bring out the SWAT team.  

She was very reluctant to talk about the events, so her dad knelt on the ground and asked her to show him what had happened on the playground. “Do it to me,” he said, acting like it was a casual thing. Immediately she went behind him, hooked her arms under his, then tried to haul him up and backwards a few paces, then with her arms still hooked under his, she tried to maneuver him forwards, as if to force him to march.  She did it with a sort of brisk brutality, changing the expression on her face to an authoritarian adult’s. He asked her to repeat the gestures. With the same sureness, same expression, she repeated the same series of maneuvers.  He asked, “Who did this?” and she repeatedly said the name of her brother’s teacher.  We asked her if the teacher yelled at her. She said no.  We asked her if she was trying to leave the school grounds before all of this happened. She said, no, she was just “running around.”  Running away from the teacher in other words.  Noncompliance. 

We had an elaborate “no restraint” letter filed with this school since our children started, saying under no circumstances were our children to be restrained in any manner for noncompliance or punishment.  We learned from the school’s self-serving report that only one of our daughter’s four staff members were on the playground when the incident took place. Not that it mattered, since apparently another staff member—our son’s teacher as it happened—was instructed by an aide from our daughter’s class on how to “handle” our daughter. From this, we can only assume that what happened was policy.  We had to wonder how often this had happened to our less verbal son or how many times the kids might have seen their twin sibling mistreated.

There was no report from the school that my daughter had been a danger to herself or anyone else. There was no mention that she’d attempted to leave the playground, only that she bolted from a bench.  They later tried to spin it that she “could have been running towards an unfenced area” (forty yards away), but the claim is worthless and they were already caught in lies. Common sense and state law dictate that a child must be restrained if they pose an imminent threat to self or others. But common sense is on the side of never restraining our daughter:  she’s not a wanderer and she’s never once been seriously aggressive. And even if a child wanders or is aggressive, there are so many less destructive things which can be done before a situation escalates.  There was also no mention that the day was 92 degrees and that it’s in my daughter’s IEP that she not be taken outside on days like that if the heat makes her irritable. Despite every effort to address it, she still has a documented mitochondrial insufficiency and can’t tolerate extreme temperatures. In her IEP is a health crisis directive documenting her GI disorder and that she vomits when afraid, putting her at serious risk of aspiration asphyxia in a struggle.  

This is why Individual Education Plans were developed in the first place: children with disabilities were being harmed without them.  But what good are they if not enforced?

I got on the phone with a friend, an advocate who specializes in school abuse cases. She recognized the maneuver my daughter described as a textbook “transport restraint”.  Some of the techniques have diabolical names, like the “Sunday Stroll”.  Our daughter later reenacted the incident in the presence of five more adults outside the school, including a professional therapist, all of whom saw the bruises.   

We removed both twins from the private special school and attempted to enroll them in the district, which we thought would be happy not to have to pay the $120,000 yearly tuition for our twins’ placement. Instead the local school blocked our children’s enrollment.  They’re probably terrified at the other school’s depiction of our family.  We called for meetings; we cited IDEA, to no avail.  The kids developed worsening GI symptoms from the stress and we called for a thirty day medical leave. The school had plenty of time to make arrangements for admission, but it seems they want the kids elsewhere, probably involving a two hour bus ride with untrained bus aides to a segregated institution with more silent witnesses who can’t report what happens in the course of a day.  Enough—we want the children integrated,  a five minute drive away, around verbal kids who can snitch, maybe even a few (those that are left) who don’t have diagnoses that can be doubled back to discredit testimony, and that’s it.  We hired an attorney.

My husband is designing a modern house for clients which will probably end up in a magazine.  He worked for so many years to develop a project like this—not that he’s enjoyed a second of it while worrying about his kids. When that project is done, we’ll always think of it as “Casa Retainer”, because that’s where the money will have gone.  Not to treatment, not even for a college fund. See, that’s where we plan for the twins to be in 12 years—college, not living off taxpayers.  If it’s up to us and they continue on the recovery path they began four years ago, and if we can keep them from suffering posttraumatic stress from school abuse, there’s no reason this can’t happen.  Not unless outside forces make a reason. 

We’re lucky we can even think like this. It feels funny to say that. We weren’t lucky our children were cognitively injured to begin with, that they were once pegged low functioning, that insurance doesn’t cover the treatments which would actually help them, or that we haven’t slept in two months. But we’re lucky we could afford to treat our children out of pocket when they began regressing; lucky we can even pay a retainer—even if it means the adults in the house will eat the same cheap food for a year and we may not make it to the family Christmas gathering for a second year in a row.  We’re “lucky” the school didn’t double back charges, blame us for the bruises, make spurious reports to child services and take our children away.  Considering that things like that happen all the time, luck is relative here in the fourth world.

If I end up crying behind my sunglasses in the park on a beautiful day because the anxiety is wearing me down to a stump, at least the kids can be in the sunshine, safe with their family instead of on a ward or in foster care, where their statistical risk of being killed or sexually abused is respectively four to eight times higher than in the worst homes in America. At least, at least. But as the conflict continues, fears begin to gnaw.  As for local community support—that thing which institutions occasionally fear— there is none, save for a few neighbors and scarce pals who could hardly add up to a rally. We were new in town when the twins were born, though autism families who’ve remained in the same place all their lives can end up in social Siberia.  If it once took a village to raise a child, it now takes a village to protect one and it’s been made more than clear that we don’t have that where we live. We shouldn’t be surprised: looking around at the dismal health of even average kids in our area—asthma, peanut allergies, seizures, ADHD, tics, eczema, OCD, diabetes— and considering how little is being done or said about it, it doesn’t seem like anyone cares that much about kids in general.  Still, with each person who expresses, one way or another, that they’d let our children rot if push came to shove, it’s like a black hole begins to spin at our feet,  the earth slants and we feel as if we’re being gradually pulled towards the crush. We start to claw at the ground, we flail. It’s all so unbecoming.  We’re probably doing it for attention. A little adult ABA will fix that—just ignore us.  Or have a laugh. But count us lucky.

It could have been so much worse. Like our friend who was forced to leave the country with her children for six months after the school principal made a spurious report on the family to child protective services.  My friend’s son, a very high functioning 11 year old with an adult sense of humor, was being bullied in school and denied services. The family tried to address the situation through the IEP process. In short order, the school retaliated. One day the little boy went to school with faint marks on his face from scratching an eczema rash. Despite the fact the boy’s eczema was medically documented and he’d gone to school with much worse rashes, the school’s principal decided this was evidence of self-injury and parental neglect/abuse.  He brought police to the school and brutally interrogated the boy, who understandably began to disintegrate.  My friend found her driveway loaded with police and child protective service agents and was barely able to keep them from taking her son on the spot. There was no guarantee they wouldn’t return.  In light of how cavalierly the principal was able to break federal laws up to that point, my friend did not foresee justice prevailing in the immediate future. If the state of Florida got their hands on her son, it was statistically guaranteed he would be forcibly medicated and abused and she had reasonable fears he would not survive it. As another friend, an attorney, handled the bureaucratic nightmare, my friend got on a plane to Europe with her children to stay with her family. Her husband had to stay behind to work. The stress of what had happened to his family landed him in the hospital with heart failure.  Eventually my friend came back from Europe once the initial danger had been sorted, only to be charged with truancy. This school also called around in order to blacklist the family and ensure no other local school would open its doors to her son. 

Or we could have experienced what  Julian Wendrow and his family endured. After the family pushed for services, a school aide fabricated that Julian’s daughter reported sexual abuse.  The child was nonverbal and the aide was assisting in the use of facilitated communication. The family’s desire to try out the controversial communication technique was viewed by some as a “misstep” that made them vulnerable; but that’s hardly the moral of the story. Why couldn’t the family safely attempt every means of eliciting communication from their little girl without fear that a school employee would use this to manufacture the worst accusations in the world from thin air? From what we experienced, it seems any school staff can say that any child said or did anything; and anything contradicting the school party line can be attributed to “reconstructed memory”.  Julian spent more than 80 days in jail, his wife spent time in custody and their high functioning son was subjected to a graphic third degree at the hands of local police while the little girl was held by the state.  Eventually the family prevailed: all the fabricated charges were dropped and the school and police are now in the hot seat for grotesque abuse of civil rights. But no amount of justice will remove the family’s scars, which law and order did not protect them from soon enough to prevent. 

We could be like the local grandmother whose custody was threatened after her granddaughter was repeatedly restrained for noncompliance in a special school. Then the school pressured the family to put the child on drugs, claiming the girl’s worsening behavior was due to a brain chemical imbalance, not the fact that two staff were throwing the girl over their knees with her arms jacked up behind her back. They were deliberately knocking the wind out of her to force her to comply to various arbitrary things, like opening a book when told to or sitting in her seat.

Or we could be in the shoes of a friend whose wife could hear their son screaming through the door of the school’s occupational therapy office. School staff physically blocked his wife when she tried to go to her child. The boy emerged with bruises—the photos were horrific. The school told police the marks were self-inflicted and police wouldn’t investigate. The prosecutor said that, since the child wasn’t sufficiently verbal to testify, there was no case. They moved to another district where they heard the schools were better, but discovered the new school had a padded seclusion room only a few feet from their son’s desk. It was in constant use, so their child was always witness to screaming children being stuffed into the room. The school was so peeved that the family disallowed use of their special room that they began illicitly putting the five year old in a cinder block closet, in which someone had crammed a “therapy tent”. The little boy needed therapy after a few rounds in that “therapy tent”.  Staff marked the five year old “dangerous” after the boy pushed folders off a desk and called staff “fucking idiots”. The family could not understand how stating the obvious made their son a danger. Staff commented in front of the boy that he was the “worst” they’d ever seen. Now the little boy says, “Daddy me worst”. Now one parent spends all day, every day, parked in the school parking lot, at the ready to be called to intervene on any situation in order to give the school no excuse to cage their son.

We could have been subjected to what  Maryanne Godboldo and her daughter have been through when 13 year old Ariana fell into a kickback web of Detroit’s drug-company embedded child services after her mother refused to keep Ariana on Risperdal. Maryanne reported (as is common) that the drug made her daughter violent.  Ariana was finally returned to her mother—after being raped in custody

There are so many other stories. Abuse, restraint, children duct taped to chairs, children beaten or forced to drink chemicals, six year olds arrested on school grounds, children sprayed in the face with lemon juice, forced into face down prone restraint, secluded in cinderblock closets, bitten and slapped by staff,  dragged across classrooms with broken limbs or ribs, burned, struck on the head with water bottles, asphyxiated in their own vomit as adults three times their size sit on their backs, families threatened with loss of custody for reporting any of the above, for requesting services—  the list goes on.   Families Against Restraint and Seclusion documents as many  news reports as they can, but some of these things have happened to the children of parents I know personally. And I have to ask myself, how long can anyone pretend something is an anomaly and not status quo when they personally know dozens of people whose children have either been abused or whose custody has been threatened for reporting abuse or lack of services, or for their children’s special diets, or for the enzymes they request be given in school in place of major sedatives? 

For every case that happened to a friend or acquaintance, the source of tension with schools or institutions began over the issue of environmental cause of their child’s disability or the measures the families took to deal with those injuries. For us, special diet was one initial source of tension which would have died down, but the tension compounded when we asked the administration and staff to keep the children away from a new wing of the school. It was an inconvenience and we were gracious, but we had no choice.  Before spring came and the outgassing new construction could be aired out, it smelled like a Sharpie marker.  It was clearly making the kids sick and giving staff migraines, though others claimed to be unaffected and argued that the building materials were “sustainable”.

As an architect, my husband knows from green-washing. “Sustainable” and “low VOC” mean approximately nothing if you start vomiting and develop eye and respiratory infections after spending 14 hours in a new construction. Many architects avoid it, but children’s reactions aren’t taken seriously. Through this we were really able to see how industry defense front groups spread misfortune beyond simply contributing to the decline of human health: the defense spin fuels sulking denial; denial fuels the eye-rolls; the eye-rolls spread reduced empathy; reduced empathy leads to all sorts of mayhem. That’s what we perceived happening.  My friend experienced the same spread of resentment over her son’s special diet and her biomedical charity.  For the Wendrows, tension and school cynicism mounted over their daughter’s medical care before the aide launched the false accusations. For the local grandmother, special diet and noncompliance with drugs were a source of discord. Similar issues had begun to brew before our other friend’s five year old was assaulted. Maryanne Godboldo preferred taking Ariana to integrative medical specialists to treat a documented case of vaccine-induced encephalitis rather than keeping her daughter on antipsychotics. 

Abusers will always find an excuse to abuse; it may be simply that parents who take seriously their legal duty to advocate for their children are easier targets in a corrupt system. Recovery families may be more “trouble” to institutions in general, but it’s not as if laying down and giving up rights will protect kids either.  The way things work in the US at the moment is that schools and institutions have developed the perfect “checkmate” to ward off all complaints or lack of obedience: they can turn that lever of love and have your children taken away.  Maybe it isn’t strictly legal to do this; it’s certainly not legal to lie to police or fabricate reports to child services.  Maybe it isn’t legal for CPS to take children without properly signed court orders. But who will stop them? State Offices of Civil Rights are increasingly refusing to investigate school abuse cases. There got to be too many.  Maybe the court will eventually find for the family in many cases and children will be returned, but in what condition? Drugged? Raped? Dead?   Maybe for the moment it’s mostly happening to children of single parents, families from other countries and minorities.  But lies are hungry as we all know, and they get bolder every time they feed.  So once things started to go wrong for us, we found ourselves unable to pretend it couldn’t get worse.  Coming out of denial may be sort of a “global” effect—you emerge from one cloud, you emerge from others.

I’m too worn out to be very eloquent in making the following point: Things have gone too far.  I don’t want to just “get mine” in this situation— get our own kids safe, pull up the ladder behind us and leave it at that. That’s not safety. While some advocates take the long road of changing legislation, I also want to see the game changed on the ground a bit because when something happens to any family, anyone is “next” and the community begins to squirm under the axe like rats. The families who stand up for their kids may find themselves shunned by fellow parents who mistakenly believe groveling for amnesty will keep their own children safe. It’s not a fair test of character because it’s not simply our own adult welfare on the line but our children’s. Creating pragmatic safeguards makes standing up for rights more fashionable—people could even get used to it.  Homeschoolers have a legal aid fund they can pay into in the case they need to defend their educational choices. It’s one of the things which has protected the unschooled movement as a whole, at least to some degree.  I think all families of disabled children enrolled in schools, public or private, could use something similar.

I don’t pretend to understand the logistics of this, whether it’s possible, how it would work.  But I do know that no one with a disabled child can afford to rely on the kindness of strangers anymore, because that’s all we’re standing on if we’re lucky.  We’re not protected by enforcement of existing laws and we’re in danger of seeing existing protections eroded. Anyone doing their job and providing a safe education for our children is not doing it because they have to. No broad enforcement, no guarantees. We all know that, in the current economy, families worried about paying for food over the next month may still be ineligible for state legal aid.  A legal defense fund would allow parents to take matters into our own hands, because “strangers” mostly only step up for those who can pay for justice while schools and institutions fund their campaigns against families with taxpayer’s money, rely on legal loopholes, lack of enforcement and the emotionally and financially tapped-out status of families to get away with too much.

Again, no one would have as many friends as we do who’ve been through as bad as or worse than us in a system where injustice and brutality are the exception and only occur on the fringe.  When a system not only lies about how children ended up in special education to begin with but actually plays a role in it, no one should be surprised that this lie becomes a green light for more abuse and more lies. 

Adriana Gamondes is one of our Facebook page administrators and lives in Massachusetts with her husband and recovering twins.  

 

Posted by Age of Autism at December 28, 2011 at 5:43 AM in Nightmares Permalink

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