Managing Editor's Note: Click to enlarge and read the photo, an ad from our sponsor NAA. This is a thoughtful, two part post by Adriana Gamondes. Last week we read of a young man with autism who had bleach thrown in his eyes for a toileting accident. As the numbers of student with autism grows (1 in 38 boys?) and the adult population soars, what can we expect for our loved ones? The post follows the poem. Grab a coffee, spend some time with this one and share it with friends, family and educators, won't you?
Special Ed—Part 1
By Adriana Gamondes
The Angel in the Engine
It starts with just a little tap
A little jolt
A little rap
They swore the thing was stripped for scrap
But wound in weeds it lay in wait
The angel in the engine
Is whispering your name
And warns you of forgotten freight
It starts with just a little cry
It barely breathes
Gears grind with such a distant grief
Then bear down at the speed of crime
The angel in the engine
Is whispering your name
And tells you it will run on time
It starts with just a little mark
Just for the charts
If memory serves (they like it, see)
But memory fails (then so do we)
It’s only rust on every rail
And loving hands to help them sleep
The angel in the engine
Is whispering your name
And tells you how they spit their teeth
It ends with just a little strike
A little flame
A little spark
They all fall softly in the switching yard
That’s how in hell they learn
The angel in the engine
Is whispering their names
And asks you what this match will burn
I wrote the above at 2 in the morning after watching the Government Accountability Office hearings on restraint, seclusion and death in special education (HERE.)
Shortly after seeing the GAO coverage last May, I met with our local school nurse in order to start the process of registering my vaccine-injured twins for kindergarten after two years of homeschooling. First I had to ask about food handling and management of allergies, then I asked about the “quiet room”, adding that my husband and I weren’t going to sign off on its use. The nurse was taken aback and began to defend the room—kids like the quiet time, there would always be someone in there with them, it would never be locked, there were windows and it would never be used for punishment. I told her that as much as I knew in my heart that the staff at this school would never deliberately endanger my children, all the reassurances she was offering were the same as those used by schools where children had died. I said that if all attempts to stick to the Individual Education Plan failed on certain days, they should simply call me and I would be at the school in an instant, but we wouldn’t agree to anyone laying hands on our children. Her face fell and she said impatiently, “Well, I think we’ve been over all the potential disasters”. Yes, of course, parents who over-focus on disasters…her remark evoked a hash of recent studies equating autism with parental mental illness—never mind whether those disasters are actually happening every day.
If the nurse was trying to assure me that the room would never be used as punishment, the fact that the school suddenly dropped all plans to register the children for a summer program after this conversation was not reassuring. I could be wrong, but it seemed we were being punished for attempting to take away a counted-on tool for managing children with learning disabilities. My husband and I decided that we’d continue to homeschool if we couldn’t get placement in a private program which could be confirmed not to use restraint, seclusion or other aversive practices.
A year before the GAO hearings, I learned about the “mechanics” of restraint and seclusion—now commonly referred to as “R&S”—the easy way: someone told me about it.“Cassandra”, as I’ll call her because her clients could suffer if her identity was revealed, is a close friend who works pro bono as an attorney-advocate for families of disabled students. A fellow warrior and “biomed” mother with a vaccine-injured son the same age as my twins, Cassandra was just becoming active on a national level against abuse of disabled students a year ago and was suffering under the weight of what she was learning.
She described how autistic children seemed to be the particular targets of abusive practices in many public and private schools and how, despite attempts to blame the Individuals with Disabilities Education Act (IDEA) for the abuses because of the legislation’s preference for inclusion (integrating typical and disabled students), the abuse mostly happens in self-contained (disability-only) classrooms among frequently nonverbal witnesses.
Cassandra explained how budgetary problems with providing research-based therapeutic safe-guards against disruptive behavior such as Applied Behavior Analysis (ABA) were just part of the problem, since the per-child funding schools receive is often channeled to a general education fund and Individual Education Plans were not consistently honored. She said she’d found some schools behave as if they were doing a favor to parents to even teach their autistic children and did not feel accountable for how the children were treated under their auspices.
She told me how the Department of Education had responded to IDEA by gradually carving out virtual legal immunity for certain practices which even government agencies like SAHMSA have worked to ban in other federally funded facilities. Cassandra discussed how many of the restraint/seclusion practices used in schools would be illegal anywhere else, effectively making public and some private schools like “foreign soil” where constitutional rights are abridged, particularly for select students.
She told of countless reports of paperwork being altered after incidents of abuse, how documentation and taped evidence disappeared, how parents who complained were silenced with “slap” lawsuits by the schools, how staff witnesses refused to testify truthfully or were suspended before they could. She explained how police often wouldn’t take reports of abuse, how child protection agencies have no jurisdiction in schools and how schools’ “Due Process” is too frequently grossly biased.
She told me how school staff— even in cases which resulted in the deaths of children—simply went on to work in the same or another school district. She sent me articles, Youtube segments, files of family testimonies filled with descriptions of horror and injustice.
Children asphyxiated on their own vomit, lying on a hard floor with several adults leaning on their ribs. Children shuddering their final breath in pain and terror, the last words they might hear on earth a mocking, “Quit faking”. Children strapped to Rifton-type chairs, forcibly choked on food, hit and slapped, stripped naked in public, sent to cinder block closets to sit in their own blood and excrement. Children having pills forced down their throats, burned with hot pans and chemicals, handcuffed and duct taped, dragged through classrooms with broken bones. Children deliberately induced into seizures as a joke, called names, laughed at, traumatized. All at the hands of those charged with their safety and education.
Like most of the people I’ve encountered who are involved in the effort to bring R&S to public attention, Cassandra protests that she hasn’t “done that much” and then immediately lists the people she feels have done more. If evil were a machine, then these would be the reverse engineers. One person Cassandra talks about a lot is Phyllis Musumeci, the founder of Families Against Restraint and Seclusion (HERE), whom Cassandra credits with playing a considerable role in getting information to the GAO , resulting in Congressional hearings.
Phyllis, as it turns out, is similarly modest and tends to credit everyone else’s work and sacrifice in bringing the R&S issue to the fore. Phyllis and Cassandra both speak about Lori McIlwain’s phenomenal recent anti-R&S campaign for the National Autism Organization (HERE) and Curtis Decker’s key work for the National Disability Rights Network (HERE), among other participants.
They both mention Isabelle Zehnder’s Coalition Against Institutionalized Child Abuse (HERE) in amassing a “death list”, albeit for residential treatment centers, not schools. Zehnder’s list, as vastly incomplete as it is, remains the most comprehensive in existence because, as the GAO reported this year (HERE), “…There is no comprehensive reporting system to track such injuries and deaths or the rates of restraint and seclusion use by facility. Because reporting is so fragmentary, we believe many more deaths related to restraint or seclusion may occur.”
Phyllis Musumeci is the mother of Christian Musumeci, a teenage boy with autism coupled with Cornelia de Lange syndrome. Phyllis and her husband Gianni live in Florida.
By the time Christian was in seventh grade, Phyllis discovered that the school had been restraining and secluding her son for over fourteen months. Before she understood what was happening, Phyllis noticed Christian’s darkening mood and emotional withdrawal. Then Christian began coming home with bruises, but he would only say that he “fell down”.
What Christian left out was who had held and pushed him to make him “fall” in the first place.
As too often happens, after more than a year of abuse, Christian became violent at home for the first time and Phyllis and her husband were baffled by the dramatic changes in their son. The only explanation for this was the “experts’” usual alibi for all things autistic—“puberty”. But the school’s restraint logs offered another explanation: Christian, like other autistic students, was being forced into the face-down prone restraint position and put into isolation almost daily for the least infraction and for behaviors having to do with autism—such as being unable to tolerate the blare from music class. If puberty had anything to do with staff conduct in Christian’s situation, it was merely the static perception of what dangers might be presented by adolescence in autism; a tragically self-fulfilling prophesy in many cases.
Medical authorities are in agreement that children with Christian’s particular co-morbid condition tend to suffer from pain from various known physical ailments that come in tow with the disorder, particularly GI disorders—the very mitigating conditions that medical authorities deny in relation to children with idiopathic or “regressive” autism. Not that this known cause of physical pain seemed to inspire empathy among the staff of Christian’s school, though. Staff also appeared uninterested in the fact that Christian’s condition might make him that much easier to kill: the primary cause of death during restraint is traumatic asphyxiation, often caused by aspirating vomit. When at last Phyllis was able to pry the story out of her son, Christian described his experience with restraint in this way: “Mom, they hurt me. They held me down on the floor”.
Phyllis went to the school for an explanation and found that the year’s worth of restraint logs on her son had “gone missing”. Later, during her family’s lawsuit against the school, school officials would falsely claim that they had demonstrated “professional crisis management” techniques (physical holds) for her from the beginning—a verbal report which was taken seriously by the Florida Department of Education despite the school’s inability to provide documentation verifying any such thing.
In the mean time, the school’s aggression had taken hold in Christian—they had taught him well. The Musumecis reluctantly placed their previously gentle son in residential care where he remains. That’s when something in Phyllis nearly broke and she embarked on a single-minded data-gathering mission which should be familiar to any parent of a vaccine injured child. Phyllis logged thousands of hours on the computer over the next three years, staying up past midnight on most nights, putting out hundreds of Google alerts for stories in the news on restraint, seclusion and abuse in schools in every area of the country. She located the few organizations which were active in the issue and found that these were sometimes at an impasse because coercive practices on the part of schools had effectively shut down some parents’ willingness to report the crimes against their children.
But Phyllis, as the “horse’s mouth”, began trying to contact families from news stories and started a listserv to collect parents’ stories. After a time, hundreds of emails began pouring in from across the country from betrayed families of disabled students. Phyllis began emailing the stories she was amassing to any disability organization with an active email account. She contacted state and federal officials, news stations, local representatives—anyone who could or should be remotely interested in the information she was gathering.
At last, instead of Phyllis having to break, the story did. A few local Florida news outlets picked up on reports of abuse in schools. Some families who’d at first only offered their stories in an anonymous capacity— and only because the person asking was just another parent, not an official-seeming reporting system— stepped forward into the new light being shed on the issue. Other families were intimidated by the real threat of school retaliation and withdrew, but there was now a sufficient database for larger organizations to work with and to begin the difficult process of verification—the way that “anecdotes” are turned into “testimony”.
That is, if anyone would listen. And if they listen, what will they do about what they’ve heard? It’s important to remember that the GAO made the same observation in 1998 as it did in 2009—that no government body was keeping track of the numbers of deaths of children due to restraint and seclusion. This was back when the still rising tide of autism hadn’t yet hit the public school systems with its current force. Nothing has changed, except, one must imagine, the number of children dying yearly.
But, again, no one’s keeping track. Why? Phyllis describes an endless legislative circle game— a tradition which Arne Duncan, the new Secretary of Education is continuing— in which the DOE and federal authorities continue to place the power to restrict or allow abusive restraint and seclusion practices within state control, and then many states pass the buck to district control. The schools have no interest in reporting themselves and fear loss of funding—the irony being that they have lost funding anyway. She believes that one set of iron-clad federal laws should be in place to restrict deadly and abusive practices and to independently enforce mandatory reporting in all facilities. She won’t rest until this comes to pass.
Phyllis tells of having been raised in a profoundly patriotic family with a strong sense of community. Phyllis once volunteered as a school crossing guard. These days, she describes what’s left of her feelings towards her country as more along the lines of “tough love” after what she’s seen being done to children. During our one phone conversation to discuss school abuse and legislation, Phyllis wondered aloud about what kind of country we’re really living in. I wondered to myself what century we’re living in.
How Easy it is to Be Dead
I was having trouble wrapping my mind around the things that I was learning through Cassandra and others about abuse in schools. Whenever I’d try to think about it, it’s as if the facts surrounding the issue would slip in and out of focus like a vapor, making me groggy. The sensation brought back a distinct memory of the moment when a nurse flashed a vaccine consent form in front of my eyes and then snatched it away on the day my twins received their fateful flu shots. I’ve since come to associate that “Oh-I’m-so-sleepy-lying-here-in-the-snow-think-I’ll-close-my-eyes-for-a-sec” feeling with extreme and present danger and, when I get that signal now, I wake myself the hell up.
To paraphrase Doris Lessing, There are two kinds of people; those who know how easy it is to be dead and those who don’t. After watching my father die from flu shots and seeing my children almost killed by theirs, I feel like I now fall within the first sample group.
Though my children are recovering and outbursts are less frequent, I had real fear for how someone—someone who didn’t live and die for their welfare— might respond to the mitigating physical conditions so well known to the vaccine-injury community such as “transient demonic gluten possession”, “fleeting pesticide-brain-swelling”, “dysbiotic-constipation-rage”. Especially anyone with disdain for our children’s leaking guts, disbelieving of the physical nature of their illnesses and their capacity for recovery (and their ability to one day bear witness)—in other words, too many of the know-it-all mercenaries who work with autism that I’d already encountered.
I could see how easy it would be to justify a take-down on my daughter, one that could easily go very, very wrong in an instant. She vomits when she’s afraid. Because she’s so almost-recovered but unevenly recovered, she doesn’t emanate enough “autism” anymore to hopefully buy her a little amnesty by reminding people to ascribe some of her behavior to the diagnosis. Not that this, again, seems to inspire much sympathy in some places.
I was afraid for my children, afraid there was no safe place for them within (or even beyond) our means, afraid of being reported to child services by some clueless bystander, afraid, afraid, afraid and tired of being afraid. It occurred to me that I might be abusing my psyche, “manifesting” my own fears by looking too deeply into nasty realities and whipping myself into unnecessary paranoia over “disasters”, but I threw out the notion as soon as I thought it. Anyone who’s been a statistic has a reason to doubt their luck when further dangers loom.
Yes, what I was learning was causing head-films of the terrible things that could happen to my children and I need a break from it now and again. But how many of us would have vaccinated on the recommended schedule had we had previews of what actually did happen to our children? And these realities are just there to be seen; I couldn’t make them happen any more than any other victim’s family had “made” them happen. We aren’t witches with the power to render evil in others by asking the wrong questions, thinking the wrong thoughts— even if autism families are under the gun of a kind of nonscientific, psychiatric-genetic witch hunt. We may be assigned the magic ability to “immaculately” (as Mark Blaxill puts it) morph the DNA of our offspring and taint them with our illusive bad gene juju, but we still don’t have the power to turn good teachers into abusers. Too many families believe that if they’re “nice” with the school and don’t bring up unpleasant issues, these things won’t happen— but what does that say about those who were already victimized? That they weren’t nice people?
I asked my friend “Cassandra” why she thought these abuses might be happening. “It’s because they don’t think of our kids as human” she tells me over the phone. “Ever read the DSM-derived descriptions of autism?—‘treats people like furniture’, ‘lacks compassion’, ‘doesn’t feel pain’. So they think the child deserves the same. And it extends to parents” Cassandra says. “You should hear how some people in the schools talk about autism parents. We’re all defective by association so no one has to listen to us”. And why was that? “Because if autism isn’t genetic, it could happen to them. And never forget the role the schools play in the epidemic by requiring the shots”. That gave me a flashback to my Behaviorism 101 course in college: people are able to generate real hate against a target only after they’ve done something crappy to them.
And the abuse is spreading to children with other disabilities. It’s as if the gravitational pull of that need to quarantine the fault for the autism epidemic to family of origin is so vast and powerful that it manages to suck all other cognitive conditions—whether heritable or not, and always undeserving of mistreatment regardless—into a black hole of bureaucratic, rationalized contempt. And does the lie that an up-to-15,000% rise in the disorder is due to “genetics” (when this is logistically impossible) have anything to do with it?
I think anyone can sense, even unconsciously, that there’s something deeply fishy about the rise in rates. I also think that abusive personalities have a radar for designated targets and that all authority has to do to designate a particular targeted group is to lie about them. The lies can be bad or indifferent, but the lie is the aegis, the get out-out-jail card for anything one wants to do—and then lie about doing— to the target. For this, there’s a definite historical parallel breaking through the surface.
Adriana Gamondes, a former theater director, lives in Massachusetts with her husband and recovering twins.